Urban Community Based Rehabilitation Project India FINAL REPORT_____
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Urban Community Based Rehabilitation Project
India
FINAL REPORT_____ - extracted text
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Urban Community Based Rehabilitation Project
India
FINAL REPORT____________
• 'changes from National Workshop document indicated by underlining
• I have not changed the page numbers in the index
• ** asterisks denote the start of changes and are search flags. They will all be
removed automatically at the end.
inputs and discussion needed:
1. statement about lack of data on low income communities - eg for housing, % coverage of
primary education, 5 employment in slums etc. There is no data available that puts it in
percentages - the only stuff we have found is for whole cities and is in absolute numbers with
no indication of the numbers not.
2. Define learning difficulty (and compare with MR and learning disability for the audience)
3. age distribution
* •'
4. efficiency of NGOs
Child In Need Institute (ClNl) Calcutta, South Bank University,
and the Institute of Child Health, London.
Project for the Government of India,
supported by the Department for International Development, UK
managed by British Council
MAY 1998
UCBR Project
final report
CONTENTS
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6
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i.
ii.
iii.
Executive summary
Acknowledgements
Glossary
SECTION 1
INTRODUCTION
7
1.1
1.2
1.3
1.4
1.4.1
1.4.1.1
1.4.1.2
1.4.1.3
1.4.2
1.4.2.1
1.4.2.2
1.4.2.3
1.4.3
Background
Brief literature review
Aims
Methods
Methods for the three community studies
Questionnaire study
Focus group discussions (FGDs)
Presentation of data in report
Methods for evaluation of the service approaches
Quantitative method
Qualitative methods
Tracer method
Presentation and discussion of key findings and draft policy
recommendations
Description of community study sample
Difficulty groups
Gender
Age
Socio-economic status
SUMMARY OF COMMUNITY STUDIES:
Needs and experiences of persons with disabilities in low
income urban communities
Summary of needs
Needs and experiences of work and income
what are persons with disabilities’ experiences of work?
what are the barriers to work?
is begging a common means of earning money?
what are experiences of training for work?
what are experiences of the Vocational Rehabilitation Centres
for Handicapped (VRC)?
what are persons with disabilities’ experiences of government
welfare provision?
what are the barriers to government welfare services?
Needs and experiences of education and learning
what are the experiences of persons with disabilities in
education?
Integrated Child Development Services (ICDS)’s anganwadi
centres
Primary education
what are the barriers to mainstream schools?
what are the barriers to special schools?
Needs and experiences of medical rehabilitation
what do medical services offer persons with disabilities?
what are persons with disabilities ’ experiences of medical
rehabilitation?
do medical services meet expressed needs?
7
7
10
10
10
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15
1.5.1
1.5.2
1.5.3
1.5.4
SECTION 2
2.1
2.2
2.2.1
2.2.2
2.2.3
2.2.4
2.2.*
2.2.5
2.2.6
2.3
2.3.1
a)
b)
2.3.2
2.3.3
2.4
2.4.1
2.4.2
2.4.3
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13
13
13
14
14
14
15
15
15
16
16
16
18
19
20
21
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23
23
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Appendices
1.
2.
3.
4.
5.
6.
Community study questionnaire (English version)
Community study focus group discussion protocol
Types of training experienced by persons with disabilities in 3
community studies
Evaluation questionnaire (English version)
Evaluation focus group discussion protocols
Tracer method summary
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i. EXECUTIVE SUMMARY
1. Background
With rapid urbanisation and the growth of urban poor communities, the Indian Ministry of Welfare
is seeking an appropriate model of service provision for persons with disabilities in urban areas.
Any model should take into consideration both the special characteristics of poor urban
communities, and the experience and performance of urban services. The Urban Community
Based Rehabilitation (UCBR) Project was set up to do this.
2. Aims
1) to conduct community studies in low income communities in Bangalore, Calcutta and
Visakhapatnam to explore: i) the expressed needs and experiences of persons with disabilities and
their families in low income communities and ii) experiences of existing services in relation to these
needs.
2) to evaluate eight approaches to service provision in the three cities in relation to these needs.
3. Methods
587 persons with disabilities and their families from randomly selected slums in three cities,
Visakhapatnam, Bangalore and Calcutta, were interviewed by questionnaire covering socio
economic, socio-cultural information, community life, service use, plus qualitative discussion of
needs. 22 focus group discussions (FGDs) covering 144 persons with disabilities and family
members were held to discuss experiences and needs. Eight service approaches, including
government and NGO, centre and community based were studied. A questionnaire was used
with a random sample of 492 service users covering socio-economic, socio-cultural information
and service use. 40 FGDs explored with 240 people, socio-economic, socio-cultural information,
and experiences of service. Individual and group interviews were held with staff members about
staff attitudes, and service costs. For a range of 6 impairment groups, the service use of a total of
60 persons with disabilities was both observed and followed up afterwards, in order to measure
the quality of medical rehabilitation.
4. Results and draft recommendations
4.1 Disability and poverty must be addressed together
Whatever the situation, the additional costs of disability make families poorer. The needs of
persons with disabilities should be included in mainstream urban poverty eradication programmes.
The principle of inclusion means that persons with disabilities and non-disabled people have equal
opportunities to share in mainstream activities. The barriers that prevent such inclusion, which
include economic, structural, environmental and attitudinal, should be identified, analysed, and
removed.
4.2 Representation of poor persons with disabilities must be a foundation of their
inclusion in mainstream development.
This study found that the priority needs expressed by urban poor persons with disabilities and
their families are for income and education, priorities in common with poor non-disabled people.
59% of men and 79% of women with disabilities were unemployed. Policy and practice should
enable persons with disabilities and their families from low income areas to express their own
needs in the development process.
The study found that women with disabilities were significantly less likely to attend school or do
paid work than men, and were perceived to be exposed to greater risks. Women and girls took on
considerable additional work in caring for persons with disabilities, in isolation, and without
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support. Policy must ensure the equal representation of poor urban women with disabilities and
their female care givers to express their specific needs through a community based approach.
This study found that a barrier to persons with disabilities ’ inclusion in structures is the excluding
attitude of staff in government departments, community development, public transport, hospitals,
schools, NGOs, urban development, and donors. Awareness and action training on disability and
poverty, centred around the social model of disability and barriers approach, and lead by persons
with disabilities, should be compulsory for all central and state government staff, municipalities,
NGOs, and donors. Persons with disabilities should be included into the network of community
development services, from the relevant Ministries’ actions to community level structures.
Most importantly, all urban local bodies such as municipalities, corporations, and community
development societies should ensure adequate resource allocation for the implementation of
inclusion of persons with disabilities in all their programmes, including support for the informal
sector, such as self employment schemes and allocation of space for small and medium sized
enterprises. Inclusion can be enforced through budget allocation, much as all development
budgets and activities must include the needs of women. Government and donors should adopt
inclusion as a pre-requisite to resource allocation.
4.3
Support the family and community
The study found the greatest support for persons with disabilities came from their own families,
and their immediate communities, and not from government or NGOs. The greatest needs
expressed by persons with disabilities and their families were economic. Support, including
money, should be given to family and community based income generation groups complemented
by group managed day care, and emotional and social support. Provision of loans for persons
with disabilities already exist in India, but in the three community studies only one of 587 persons
with disabilities interviewed had secured a loan. Policy and practice should treat persons with
disabilities as a priority group in micro- finance schemes. Loans should be available to care
givers when persons with disabilities cannot work themselves on account of their disability.
The study found that five times as many children with disabilities were served by local mainstream
schools as by special schools. Mainstream schools should be supported to include the needs of
all children, including children with disabilities, within their catchment area by changing national
and state teacher training curricula, the physical environment of schools, learning materials, and
providing disability awareness training for all staff, non-disabled children and their families.
4.4
Centre based services do not meet the needs of urban poor persons with
disabilities
This study found that centre based services which focused primarily on medical rehabilitation and
segregated education do not include or meet the needs of poor urban persons with disabilities. In
one city in which 38% of the community study sample lived in kutcha (poor) houses, only 4% of
users of centres came from this socio-economic group. Thus centre based service provision
reinforces inequity. Poor people are unable to access centre-based services because of barriers
related to the cost and time of travel. These become increasingly important when non-mobile
children get older and heavier.
Centre based services focus on medical needs which are not the priorities of poor people.
Medical rehabilitation has a limited role in meeting the needs of the urban poor. It is inappropriate
for centre based medical services to manage community based services.
Accepting that all services are inadequate, financial and skill resources should be directed
towards community based structures that demonstrate that they effectively reach poor people. No
additional resources should be put into centre-based referral services unless they meet the
criteria of equity (priority coverage of those most in need) and quality, and support community
based approaches. No additional resources should be put into any other centre based services.
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4.5
NGO and government roles
This study did not find evidence to support that NGOs are more successful than government at
reaching poor people at community level. The study found that the most important determinant in
reaching the urban poor was a community-based approach as part of general community
development. This was true for both government and NGO services. Allocation of resources for
persons with disabilities should continue through the community development structures of both
government and NGO sectors.
4.6
Monitoring and evaluation
This study found that coverage of urban poor persons with disabilities by service organisations is
extremely limited. Less than 5% of persons with disabilities interviewed in the community studies
had used NGO rehabilitation services. 88% had used government medical rehabilitation services,
but the services were of poor quality and expressed medical needs were not met. Government
and donors should make effectiveness in meeting the real needs of urban poor persons with
disabilities a prerequisite of resource allocation.
The study found that government benefits have extremely limited coverage and are not equitably
distributed. Significant barriers to access exist in government structures. Government should
monitor the coverage of welfare provisions such as disability certificates and loans, and address
institutional and attitudinal barriers to their distribution.
4.7
Towards a model of urban community based rehabilitation
It was anticipated that one of the approaches or a combination of the elements from different
approaches, would emerge as a model for urban community based rehabilitation. This was not
the case.
However, the study found compelling evidence that suggests that certain
characteristics would be appropriate in such a model. These are presented in the report and will
be discussed at the national workshop.
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ii.
ACKNOWLEDGEMENTS
The UCBR Project wishes to thank the following for their assistance:
•
The eight project partners, the persons with disabilities and their families who use their
services, and their staff for their patience and help throughout the project. The late Michael
Mathias was a driving force and we particularly remember his invaluable contributions.
•
Past and present joint secretaries of the Ministry of Welfare
•
and the following individuals for their advice and support during the project’s life:
• Mr Lal Advani
• Mrs Pramilia Balasanduram
• MsTulikaDas
• Dr Rick Davis
• Ms Sheila Eden
• Dr Vic Finkelstein
• Dr Paul Garner
• Ms Rachel Hirst
• Ms Wendy Jacobs
•
•
•
•
•
•
•
•
•
Mr Chapal Khasnobis
Dr Helen McConachie
Ms Anuradha Mohit
Professor Mike Oliver
Mr R.S. Pandey
Ms Ravi Phull
Dr Naomi Richman
Professor B.Swarajyalakshmi
DrUmaTuli
Above all, we thank the persons with disabilities and their families in low income communities of
Calcutta, Bangalore, and Visakhapatnam who were involved in the UCBR study. They shared
their views and experiences on the understanding that policy and practice will better meet their
needs.
iii. GLOSSARY
CBR
DRC
FGD
ICDS
ICIDH
ILO
NRS
OPD
PIED
SIP
UBSP
UCBR
UNESCO
VRC
WHO
Community Based Rehabilitation
District Rehabilitation Centres
Focus Group Discussion
Integrated Child Development Centres
International Classification of Impairments, Disabilities, and Handicaps
International Labour Organisation
Nil Ratan Sarkar
Out Patients Department
Project Integrated Education for the Disabled
Slum Improvement Project
Urban Basic Services Programme
Urban Community Based Rehabilitation
United Nations Education Cultural and Scientific Organisation
Vocational Rehabilitation Training Centres
World Health Organisation
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SECTION 1
INTRODUCTION
1.1
BACKGROUND
The Indian Ministry of Welfare (MOW) has developed a model for community based rehabilitation
(CBR) in rural areas. With rapid urbanisation and the growth of urban poor communities, the
MOW wished to investigate an appropriate model for urban areas, which takes into consideration
both the special characteristics of poor urban communities, and the experience and performance
of urban services. The MOW approached the then Overseas Development Administration (now
the Department for International Development - DFID UK) for technical assistance. The
collaborative project undertaken uses the complementary experiences and skills and of service
providers in three cities; Calcutta, Bangalore and Visakhapatnam, together with an Indian Co
ordinating Agency (Child-in-Need Institute - CINI, Calcutta) and the UK’s Institute of Child Health
and South Bank University. The project involved an evaluation examining the activities, coverage,
quality, cost, and ability to meet the expressed needs of persons with disabilities. These needs
were investigated through community studies in the three cities. This document, including draft
recommendations for urban policy, is the product of this process.
To our knowledge, this is the first study to measure needs and experiences from the perspective
of persons with disabilities and their families in low income urban communities in India. Of the
UCBR Project’s findings, the joint Secretary, Ministry of Welfare, commented:
“For the first time we have the perception of the poor disabled user”.
Ms Gouri Chatterjee, Joint Secretary,
Ministry of Welfare, Government of India.
New Delhi ,7th April 1998
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1.2
BRIEF LITERATURE REVIEW
1.2.1
Prevalence
Prevalence studies in the field of disability are fraught with problems of definition, exclusions,
inaccuracies, disillusionment of those surveyed, and are also expensive. Hence, the World Health
Organisation (WHO) stated that every dollar spent on disability surveys and not on service was a
dollar wasted (1984). Data already exists from national surveys of prevalence of persons with
disabilities in India, carried out in 1981 and 1991. The 1981 survey (Ministry of Welfare, GOI,
1982) came up with an overall figure of 1.84% and the 1991 figure was 1.99% (Pandey and
Advani, 1995). However, this figure is low since only three categories of disability were
recognised; motor disorders, visual and communication difficulties. Mental illness, behaviour
problems, intellectual difficulty (mental retardation), leprosy and epilepsy were not included. There
was a higher prevalence of disability in rural compared with urban areas (20/1 000 to 16/1000),
more males were identified than females and there was a higher prevalence in the over 60’s. The
definitions used in the WHO International Classification of Impairment, Disability and Handicap
were not used but this classification is in process of revision into categories of impairment,
activities and participation.
* definition of disability
Most local studies find higher prevalence rates. For example a study of ten Anganwadi centres in
an ICDS urban project found a prevalence rate of 7.6/1000 (Mathur et al 1995). The prevalence
rate of neurological disorders alone in a small study in urban Bangalore was 32.8/1,000 with a rate
for epilepsy of 7,8/1,000 (Gourie-Devi et al, 1996).
1.2.2 Poverty
A higher prevalence of disability amongst poorer people is consistently found in international
studies. For example, a Canadian study examines the close bond that fuses disability, low
participation in employment, and poverty (Rioux and Crawford, 1990). In the UK, young, mainly
physically disabled people perceived that poverty, disability and ethnic background isolated them
from the wider community (Doyle et al, 1994).
In South Africa disabled black miners’
compensation payments were lower than poverty datum levels and were further eroded by
inflation (Leger and Arkles, 1989). A study from the Republic of Ireland found a clear gradient in
relation to socio-economic status in the overall prevalence of cerebral palsy, hemiplegia and
diplegia associated with low birthweight (Dowding and Barry, 1990). Since the incidence of low
birthweight is higher in poorer communities, it is probable that this differential would be the same
or more marked in India. Studies based on USA census data show that highest rates of work
disability occur in rural, female, elderly, less educated, African-American and below poverty level
populations (Holzer et al, 1996). But it was also found that poor inner city African-Americans do
not have adequate access to remedial programmes (Miller et al, 1996).
More inclusive
workplaces and an income system that is more rational and equitable is proposed to combat
some of the inequalities of poverty (Rioux and Crawford, 1990).
There are a few important studies on socio-economic differences in urban areas in India in
relation to disability. A study from Calcutta of 35,266 people showed that the prevalence rate was
three times higher in the lowest income group than in the highest income group (Ghosh et al
1984). An
important and careful study of the prevalence of serious disability in two
neighbourhoods in a Southern India city showed that all types of disability were consistently more
prevalent in the "lowest" socio-economic group. The prevalence of disability in the lowest socio
economic group was 17.2% compared with 8.4% with the "next-to lowest" socio-economic group.
The study did not include "higher" socio-economic groups (Natale et al 1992).
1.2.3 Costs to the family
A detailed study in the UK showed that the costs of caring for mentally handicapped children were
significant and diverse, potentially affecting the quality of life of all members of the family (Baldwin
and Gerard, 1990). This study found not only that working mothers and fathers earned less than
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those in a control group, but also that the life span earning curve for all classes of families who
had a disabled child was ‘flat’ whereas there was an upward curve for the control group. Although
we have found no such detailed studies from India it is inconceivable that the effect would be less
in India where social services cannot cushion such economic effects. In fact, a study from
Chandigarh showed that families with children with disabilities perceived greater financial and
other stresses when compared with the families of control children (Singhi et al, 1990).
1.2.4 Services for persons with disabilities
Few participatory evaluations of existing services investigate the demography of the population
covered by those services in relation to the population most in need. Thus the essential question
of the equitable distribution of services is not addressed. The obvious implications for health care
reform are that there should be greater access to services for populations of greater need.
Historically and in many current contexts, the opposite is true, thus exacerbating the observed
differentials.
Where resources are limited it is acknowledged that people with disabilities in rural areas and in
poor urban areas do not get adequate services. India has produced many descriptions of service
approaches for persons with disabilities, including government hospitals, national institutes,
NGOs, special schools, community programmes, and camps. However, very little is known about
whether these services include the urban poor or meet their expressed needs. Despite a paucity
of evidence of their effectiveness, these approaches continue. For example, Pandey and Advani
(1995) report the limitations of the camp approach, concluding that "although this approach has
been found to be handy in a situation where infrastructure is scarce, good quality and
comprehensive services are not possible through this approach". Nevertheless this approach is
still supported by government, NGOs and donors alike.
The Indian rural CBR scheme based on the rural District Rehabilitation Centres (DRCs) was
evaluated in 1989. The scheme had considerable impact, although it is important to note that
Pandey and Advani state that the programme was community located but not community based,
and that urban areas were not included. The "level of satisfaction was low as the DRC scheme
failed to fulfil the high expectations of providing comprehensive rehabilitation including economic
rehabilitation which it had given rise to in the community" (Pandey and Advani 1995; p.129).
Recognising the poverty of whole communities, the concept of CBR developed so that a Joint
Position paper (1994) of the International Labour Organisation (ILO), United Nations Education
Cultural and Scientific Organisation (UNESCO) and the World Health Organisation (WHO) defined
CBR as follows:
CBR is a strategy within community development for the rehabilitation, equalisation of
opportunities and social integration of all people with disabilities. CBR is implemented
through the combined efforts of disabled people themselves, their families and
communities and the appropriate health, education, vocational and social services.
References
Baldwin S and Gerard K. (1990) Caring at home for children with mental handicaps. In: Baldwin
S, Godfrey C and Propper C. Quality of Life: perspectives and policies. Routledge. London and
New York. pp131-148
Dowding VM and Barry C. (1990) Cerebral Palsy: social class differences in prevalence in relation
to birth weight and severity of disability. Journal of Epidemiology and Community Health 44(3):
191-5
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Doyle Y, Moffatt P and Corlett S. (1994) Coping with disabilities: the perspectives of young adults
from different ethnic backgrounds in inner London. Social Science and Medicine 38(11): 14911498
Ghosh BN, Das KK and Halder AK (1984) Disability prevalence in an urban community in relation
to socio-economic conditions. Indian Journal of Medical Research 80: 347-354
Gourie-Devi M., Gururaj G., Satshchandra P and Subbakrishna DK. (1996) Neuro-epidemiological
pilot survey of an urban population in a developing country. A study from Bangalore, South India.
Neuroepidemiology 15(6): 313-20
Holzer CE, Thanh Nguyen, Goldsmith HF and Thompson WW. (1996) The demographics of
disability in the south. Community Mental Health Journal 32(5): 431-443
ILO, UNESCO and WHO (1994) Community-based rehabilitation for and with people with
disabilities. Joint Position Paper. Geneva
Leger JP and Arkles RS. (1989) Permanent disability in black mine workers. A critical analysis.
South African Medical Journal 76(10): 557-561
Mathur GP, Mathur S, Singh YD, Kushwaha KP and Lele SN. (1995) Detection and prevention,
Indian Pediatrics 32: 773-7
Miller DK, Carter ME, Miller JP, Fornoff JE, Bentley JA, Boyd SD, Rogers JH , Cox MN, Morley
JE, Lui L-YL and Coe RM. (1996) Inner-city blacks have high levels of functional disability.
Journal of the American Geriatric Society 44(10) 1166-1173
Ministry of Social Welfare, Government of India, (1982) A summary of the report on survey of
disabled persons
Natale JE, Joseph JG, Bergen R, Thulasiraj RD and Rahmathullah L. (1992) Prevalences of
childhood disability in a southern Indian city: Independent effect of small differences in social
status. International Journal of Epidemiology 21 (2): 367-372
Pandey RS and Advani L. (1995) Perspectives in disability and rehabilitation. Vikas Publishing
House. New Delhi.
Rioux MH and Crawford C. Poverty and disability: towards a new framework for community
mental health. Canadian Journal of Mental Health 92(2): 97-109
Singhi PD, Goyal L, Pershad P, Singhi S and Walia BNS (1990) Psychosocial problems in
families of disabled children. British Journal of Medical Psychology 63; 173-182.
WHO (1984 ) ‘Drop that census !' World Health, Magazine of the World Health Organisation (May
Issue: Rehabilitation for All) p.4
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1.3
AIMS
1.
To conduct community studies in low income communities in Bangalore, Calcutta and
Visakhapatnam to explore:
• the expressed needs and experiences of persons with disabilities and their
families in low income communities.
• their experience of existing services in relation to these needs.
2.
To evaluate representative approaches to service provision in the three cities in relation to
these needs.
In discussing the aims of the UCBR Project, it is worth clarifying the nature of development of some
of the key features of the project; some aspects of what the project did not aim to do; and the
meaning of some of the terms used.
•_ The UCBR Project was concerned specifically with persons with disabilities and their families
from low income urban communities.
•
This study treats persons with disabilities as a social group rather than as a medically defined
complex set of conditions. It therefore does not disaggregate all data by impairmen groups.
•_ The three cities were selected by the Ministry of Welfare, Government of India so to represent
three major size categories of city in modern India. Calcutta, with its population of some 12
million, to represent the metropolitan cities. Bangalore, with an estimated population of 6 million,
as one of the second tier cities, and also one with what is described as having the most rapid
urban growth in India. Visakhapatnam, with a population of about 1.2 million, represented the
third tier of cities., and also had an ODA-funded Slum Imrovement Project with a Disability
component
•
The 8 approaches evaluated were selected after an exhaustive process of organisation visits and
discussion by members of the evaluation team. For example, in Bangalore, 50 organisations
attended a workshop in 1990 to discuss the UCBR project and their possible inclusion as
partners. The 8 were selected with the sanction of the Ministry of Welfare to represent a variety
of approaches to the delivery of services for and with persons with disabilities in urban areas.
Two of the partners (3 and 8 in the table below) are organisations started by persons with
disabilities. Two (1 and 7) were started by parents of persons with disabilities. Two (1 and 2)
employ approaches based on a professional rehabilitation workers. Two are government, and
six are non-government organisations. All except one (6) were included as partners in the
UCBR Project because they claimed to be involved with the urban poor. All except one have
proven sustainability, having been in operation for over 15 years (and in several cases
significantly longer than this).
Table 1:_______ Summary of 8 service approaches selected for evaluation_______________________
Organi
-sation
a. Centre based: out patients department (OPP); special
school; vocational training
b. Outreach____________________________________
a. Centre based: OPP; special school; vocational training
b. Outreach____________________________________
a. Centre based: special school; vocational training
b. Community based approach
4^
5^
6^
coverage group
Approaches to service provision
Home based approach, with medical referral________
Home based approach, with embryonic integrated
approach, with medical referral___________________
Orientation for integrated education, teacher training
cerebral
palsy,
difficulties
and
multiple
multiple
cerebral
palsy
and
difficulties_____
a. mainly moving difficulties
b. mainly
moving
difficulties
expanding to all difficulty groups
all difficulty groups_____________
all difficulty groups
seeing
difficulties,
multiple
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8.
special education teacher training, adult day centre, and
insurance____________________________________
Welfare approach
difficulties______
learning difficulties
all difficulty groups
•_ This study does not specifically examine or evaluate the work of other institutions and services
for persons with disabilities in urban areas. However, it approached the work of such
organisations where relevant through the perspective of persons with disabilities and their
families in low income communities. Thus, this report reflects on other services if they were
experienced and commented on by the persons with disabilities randomly sampled in low
income communities in the three cities, or by those participating in Focus Group Discussions
(FGDs). For example, this study reports on the experiences of the persons with disabilities
sampled in the three cities which are relevant to Integrated Child Development Service
(ICDS)’s anganwadis, as well as various government medical services in the three cities.
•
in this report, the term ‘community’ is primarily used as a geographical and administrative
description. The three community studies depended for their random sample on lists of ‘low
income communities ’ in each of the three cities compiled by municipal corporations and allied
bodies. For further discussion of the concept of community see section 2.6.5.
•
This report presents the needs and experiences of persons with disabilities living in low
income communities. Further categorisation within low income communities is used to further
explore the coverage of socio-economic groups by the various services evaluated. Thus,
within low income communities, there are persons with disabilities that live in pukka1 houses
and those that live in kutcha houses (and the latter are considered to be on average of lower
socio-economic status) and there are persons with disabilities living in households headed by
a government employee and those headed by a daily labourer, and within this system of
classification, the latter are considered to be on average of lower socio-economic status.
1.4
METHODS
The two aims of the evaluation, and the varied nature of the evaluation’s stakeholders
(government ministries, municipal bodies, disabled people’s organisations, and NGOs) demanded
that a combination of qualitative and quantitative methods be used. The methods are listed in the
following table:
Table 2: Methods______________
a) Questionnaires______________
b) Case studies - 'tracer method’
c) Service checklists____________
d) Document analysis___________
e) Focus group discussions (FGDs)
f) In-depth interviews___________
g) Institutional analysis__________
h) Observation________________
i) Mapping of service users
The methods were applied in two parts reflecting the division of the project into community studies
and service evaluation. The main research instruments are appended. As shown in the literature
review, case finding surveys are not useful or relevant and this study was not intended to produce
data on prevalence of disability
1 refernce for pukka kutcha
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Throughout community studies and organisation evaluations, persons with disabilities were
classified according to their difficulties, as described by WHO (1994)2.
1.4.1
Methods for the three community studies
The three community studies employed complementary quantitative and qualitative methods in
low income communities in each city.
1.4.1.1 Questionnaire study
The questionnaire (appendix 1) obtained a representative picture of the socio-cultural and socio
economic situation of persons with disabilities living in a random sample of low income
communities and their use of services in relation to their difficulties. Socio-economic status was
measured by quality of housing (roof and wall matrials) and occupation of head of household.
These proxy measures are widely used internationally and in India (for example by the Ministry of
Urban Development). Needs of persons with disabilities were measured by qualitative methods,
as a quantitative interview could create expectations which could not be met by the UCBR Project.
The sample size for the community studies was calculated using Epiinfo’s ‘statcalc’ statistical
calculator. Using estimated slum populations, sample sizes were calculated using the largest
expected frequency of any factor under study of 50% and a worst acceptable result of 40%. The
former maximises the sample size. The latter, representing a 10% acceptable difference between
expected and observed frequency was necessary given the expected diversity of the population in
low income communities and the resources available for the community study.
In each city, a cluster sample method was used. Each cluster was a low income community and
clusters were drawn from the best available lists of low income communities in each city. Where
necessary, lists were combined to give the most up to date estimate of the number of
communities and their relative sizes.
Clusters were sampled by starting at a random point and moving through a list and selecting each
nth community, where n equals the sample interval:
n =
total population
number of clusters
Once the sample was drawn up, the most reliable and cost effective means of locating persons
with disabilities was through key informants. Fieldworkers visited each community and described
the aims of the community study, and the type of people who the study aimed to interview, and
asked key informants to help find respondents. This process was time consuming. Also, certain
categories of the population were difficult to identify. Each fieldworker could locate and interview
a maximum of 4 people per day so qualitative data was collected at the same time. Where
possible the questionnaire was delivered in the first language of each interviewee. The schedule
was translated and printed in Bengali, Telegu, Tamil, Kannada, and English, and delivered by
fieldworkers with appropriate language skills. In total, 587 persons with disabilities and their
families were interviewed across the three cities: 200 in Bangalore, 198 in Calcutta and 189 in
Visakhapatnam. In each city, approximately 5% of respondents were re-interviewed by a different
fieldworker to check the validity of the interview method. Data was analysed using SPSS
software.
*Examination of the distribution of difficulty groups in the sample indicates that the key informant
method under-identified some difficulty groups, notably those with seeing difficulties (which also
included those identified by key informants as ‘having seeing difficulties’ but who were partially
sighted with one eye affected), and those who were both disabled and aged, but in general it does
2World Health Organisation (1994). “Community based rehabilitation and the health care referral
services. A guide for programme managers”. WHO/RHB/94.1; p.32
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not appear that key informants biased the sample towards less severe impairments. This appears
to be indicated by the relatively large proportion of those with multiple difficulties included in the
sample. For further discussion of the sample population see section *.*.
*The sampling method was not designed to fit existing expected proportions of each difficulty
group within the population at large. Setting a quota for each difficulty group would have
compromised the cluster sampling method used. For example, when fieldworkers visited a
community of 300 people, they could expect to find a few persons with disabilities living there
based on the expected prevalence of disability of approximately 2% (see section 1.*.* above).
However, if they went with the instruction of finding and interviewing, for example, one person with
epilepsy and one person with seeing difficulty in that community in order to fit their quota for each
difficulty, the chance of satisfying this instruction would be small. Mixing two contrasting sampling
strategies (cluster and quota ) is methodologically not advisable.
*The community study questionnaires and evaluation questionnaires were the main tools by which
the coverage of services was assessed. Socio-economic, socio-cultural, gender and age data
were collected from a random sample of the urban service users from each organisation, and
compared with similar data from a random sample of persons with disabilities and their families in
low income communities in the UCBR community study in the same city. Given the UCBR
Project’s aim of advising the Ministry of Welfare on service delivery for the urban poor persons
with disabilities, socio-economic coverage was of particular importance.
Socio-economic status can be measured in several ways. The most obvious measure is income.
It is reported that income is used as a measure of socio-economic status by the Planning
Commission, Government of India, State Government, Public Works Department, and Department
of Food. It has also been used in research, and data on income is maintained by some of the
partner organisations specifically for the distribution of progressive concessions. However,
income was not used to measure socio-economic status in the UCBR project for several important
reasons.
Estimating household income is problematic when contributions to a common
household budget are made by multiple household members, and where working patterns, and
income, are variable and/or seasonal, which are particularly common in low income households.
Estimates of income by households may also be unreliable if benefits are given in relation to this
estimate; people will tend to underestimate their income in the hope of securing more benefits.
During the evaluation period, this problem was acknowledged by several of the partners and by
some service users. Household income is not a good indicator of socio-economic status if the
number of people sharing that household income is not considered. In the UCBR project, income
was also particularly unsuitable given the length of the fieldwork period. The community studies
and evaluations took place over a two year period. With an annual inflation rate of around 10%,
data collected in an evaluation at the start of the fieldwork period would not be easily comparable
with that collected in a community study at the end of the following year.
Given the difficulties of using income as a measure of socio-economic status, an alternative is the
use of household expenditure. However, this method is also problematic. Recall of expenditure is
acknowledged to be often inaccurate, in India and elsewhere. The alternative approach, which
uses prospective expenditure diaries, has been found to be unsuitable if respondents are non
literate. Thus, in the UCBR community studies, which focused exclusively on low income
communities, the use of expenditure as measure of socio-economic status was not considered
appropriate.
An alternative to the use of income and expenditure to measure socio-economic status is the use
of proxy indicators. Proxies should have a high correlation with income. Two of the most
common types of proxy indicators of socio-economic status are household environment and
occupation type. Aspects of household environment which have been used as proxy socio
economic indicators include number of rooms, access to water supply, access to sanitation, and
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reporting factual, rather than perceptual information. Perceptions and feelings were explored
through qualitative methods. Qualitative data are presented in the form of direct quotations from
persons with disabilities and their families. For brevity, only one example has been included to
describe issues raised, but each is representative of common statements made across the three
cities. The findings of the community studies are organised in a question-and-answer structure,
and with reference to barriers to service use. The symbol ‘®‘ has been used to indicate
discussion of different barriers.
1.4.2
Methods for evaluation of the service approaches
The aim of the UCBR project’s evaluation of eight service organisation was to evaluate services in
relation to the experiences and needs of persons with disabilities from low income communities
which were measured in the relevant community study. The measures used in the evaluations
with partner organisations are summarised in the following table:
TabIe 4: Evaluation measures
Measure________
Objectives
1.
4.
Status
Model
Coverage
5.
Cost
6.
Staff structure
7.
Community attitudes
8.
Staff attitudes
9.
10.
Range of services__________
Quality - medical rehabilitation
11.
12.
Quality - education____________
Quality - employment and training
13.
14.
15.
Quality of life
Audit______
Convergence
16.
17.
Participation
Sustainability
18.
Differences between organisations
staffed by persons with disabilities with
those staffed by non-disabled people.
The awareness of staff of disability as a
socio-political issue.________________
The role of advocacy and self advocacy
in the organisation.
2.
3.
19.
20.
Explanatory Notes:_______________________
organisation’s objectives - against which each is
evaluated_______________________________
funding sources, relationships with donors_____
model of service provision__________________
coverage of services - spatial, socio-economic,
gender, and socio-cultural.__________________
i) cost of service provision,
ii) costs to user___________________________
management structure, representation and
participation of persons with disabilities and staff
at different levels_________________________
attitudes of the community toward persons with
disabilities, from persons with disabilities
perspectives_____________________________
attitudes of organisation staff toward persons
with disabilities and disability as an issue______
types of services provided
including a functional
perspective,
and
technical, interpersonal and management
quality
including formal and informal approaches_____
including orientation of vocational training, work
opportunities and outcomes_________________
from the perspective of persons with disabilities
review of user records and financial records
relationship with other services used, or
available____________________________
as a value, for service users and all staff
including finances, support in the community,
and within the organisation_________________
is there any difference in services, attitudes, of
staff who are persons with disabilities and those
who are non-disabled people
including awareness of the relationships
between poverty and disability
Ranging from persons with disabilities as
passive
consumers
of
services,
to
empowerment to assert rights as citizens and
gain access themselves
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1.4.2.1 Quantitative method
A questionnaire (appendix 3) was administered to a random sample of the persons with
disabilities and their carers using four of the eight rehabilitation approaches evaluated. The
sample was limited to those coming from urban areas. The other four did not have service users
of types amenable to a questionnaire based on service use sessions, or numbers were too small
to suit a random sample survey. Instead, in-depth interviews were used.
For each organisation in which the questionnaire was applied, the sample size was based upon
the estimated number of users attending all services provided by that organisation. This was
devised from available records. As in the community study, the sample for each organisation was
calculated using Epiinfo Statcalc. The number of persons with disabilities sampled within each
service was proportional to the total number of users of that service. Where possible, samples
were drawn at regular intervals from available lists of users, starting at a random point Where it
was impossible to know who would attend on a particular day, samples were drawn by
interviewing all those attending from urban communities until the sample proportional to the total
number of users for each service was reached. This assumed that the people attending in that
period were representative of users throughout the year. *ln total, the questionnaire interviews
took place with a random sample of 492 service users.
1.4.2.2 Qualitative methods:
Separate focus group discussions (see appendix 4) were held with persons with disabilities using
each organisation, their family members (in separate FGDs), and with the staff of the service
organisations divided by gender, and age. *ln total, 40 FGDs, including 240 people, explored:
expressed needs; socio-economic and socio-cultural information: experiences and perceptions of
the particular service under evaluation: and experiences of other services.
Description of participants in evaluation FGDs
Table 5:
23. School students #1
1. Special school senior academic girls
24. School students #2
2. Special school senior academic boys
25. Vocational training students
Vocational training female trainees
3.
26. Vocational training parents
4.
Vocational training male trainees
Education service mothers of children with 27. Carers of persons with disabilities,
5.
outreach service
disabilities
28. Outreach staff #1
6. Special school mothers
29. Outreach staff #2
7. Special school fathers
30. Physio aides
8. Adult service parents
31. Senior Therapists
9. Parents group mothers #1
32. Outreach parents of children with
10. Parents group mothers #2
disabilities, centre #2
11. Parents group fathers
33.
boys with disabilities
12. Female Vocational training trainees
34.
girls
with disabilities
13. Male Vocational training trainees
35.
young
women with disabilities
14. Mothers of Disabled Children, outreach #1
36.
mothers
of children with disabilities
15. Fathers of Disabled children, outreach #2
37.
mothers
of children with disabilities
16. Outreach girls with disability
38.
fathers
of
children with disabilities
17. Persons with disabilities on staff
39.
CBR
workers
before evaluation period
18. School boys
40.
CBR
workers
at end of evaluation
19. Schoolgirls
period
20. Outreach social workers #1
21. Outreach social workers #2
22. Youth Group of persons with disabilities
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FGDs were complemented with ongoing interviews with service users and staff, both formal and
informal in nature; case studies; and observation throughout the evaluation period.
1.4.2.3 Tracer method:
The quality of medical rehabilitation inputs was assessed using a tracer method. This multi
faceted method was applied to service delivery sessions, for a small sample of persons with
disabilities, all from low income households. It addressed the degree to which needs were met,
interpersonal, and technical quality. See appendix 5 for more details.
1.4.3 Presentation and discussion of key findings and draft policy recommendations
Analysis of data and preparation of reports was followed by a cycle of presentations and
discussion at workshops held in each of the three cities. Key findings and draft policy
recommendations were presented and the discussion incorporated in the draft recommendations
presented at the next workshop in the cycle. This process culminated in the presentation of draft
recommendations at a National Workshop in New Delhi under the Ministry of Welfare. Key
aspects of the discussions at the four workshops have been incorporate in this final report.
*1.5
Description of community study sample
1.5.1
Difficulty groups
The representation of different difficulty groups in the sample is described in Table 6. These
frequencies of difficulty groups are not intended to represent their relative prevalence in low
income communities. Rather, they are listed here to describe the group of persons with
disabilities and their families interviewed in the community study survey.
Table 6: distribution of difficulty groups in the community studies
freq
______________ Difficulty Group________________________
%
152
26%
moving difficulty - polio____________________________
2^ moving difficulty - other______________________________ 120
20%
3^ learning difficulty___________________________________ 42
7%
epilepsy________________________________________
17
3%
14%
5. speech and/or hearing difficulties______________________ S4
6^ multiple difficulties__________________________________ 124
21%
7^ seeing difficulty____________________________________ 41
7%
other (e.g. leprosy)_
__________________________________
1%
Z
587
99
TOTAL
All respondents were asked if they knew the history and diagnosis of their difficulty. From the
qualitative notes taken, some of those described as having learning difficulties actually had mental
illness.
The use of classification by difficulty in this study (see justification on page *) makes direct
comparison of the sample data with existing data on the relative proportions of different
‘disabilities’, such as the National Sample Survey (NSS) of 1991, impossible. The NSS estimates
the number of persons with disabilities and the relative proportions of different disabilities, but
leaves out learning difficulty (or ‘Mental Retardation’) and epilepsy and does not account for
people with multiple disabilities within the data. The NSS’s general definition of disability (‘any
restriction or lack of abilities to perform an activity in the manner or within the range considered
normal for human being’) is not comparable with the definition of ‘difficulty’ used in this study, and
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UCBR Project
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the definitions of different 'disabilities’ are more specific than used in this study. Three of the five
categories used in the NSS describe various communication difficulties. Table * presents the
relative proportions of different groups in the NSS, with an estimate for ‘Mental Retardation’ based
on expected frequencies reported by Baquer and Sharma 1997; p.39~:
Table *: National Sample Survey (1991) - estimated numbers of disabled perso_ns_____
~%
n (millions)
Type of Disability
4.005
13.9
Visual_____________________________________
11.3
3.242
Hearing___________________________________
1.966
6^
Speech____________________________________
4.482
15.6
Hearing and/or speech_______________________
31.2
8.939
Locomotor_________________________________
20.9
________ 6.00
‘Mental Retardation’ (moderate, severe, or profound)
28.634
100
____________________Total__________________
It should be noted that in the UCBR Project sample'multiple difficulties’ (see table 6 abve) includes
people with combinations of moving and learning difficulties, moving and communication
difficulties, etc. This accounts for some of the difference between the two tables. In general, the
key informant method over-represents those with moving difficulties, probably as these are the
most visible group in the community.
Other available data collected shows markedly different relative prevalence when compared with
the NSS, depending on the means of collection. For example, a review of annual assessment
camps in the state of West Bengal gives the following data: ‘orthopaedic’ (45%); visual (20%);
speech (10%); hearing (15%) ‘mental retardation’ (5%) cerebral palsy (2%) and leprosy cured
(3%)6.
1.5.2
Gender
Table 7; Gender distribution of community study samples_______
male
female
105 (52%)
95 (48%)
Bangalore______
73 (37%)
Calcutta________
125 (63%)
102 (54%)
Visakhapatnam
87 (46%)
332 (57%)
255 (43%)
Total
The fieldworkers were instructed to interview male and female persons with disabilities: key
informants directed them to more males. This may reflect the population of persons with
disabilities at large, or may reflect the greater visibility of males with disabilities in the urban
community. There was no relation between gender and the types of difficulty represented in the
sample.
1.5.3 Age
The sample included a wide range of age groups, including older people
Table 8: Age distribution of all persons with disabilities interviewed in community studies
5 Baquer. A and Sharma, A (1997) Disability: Challenges Vs Responses. Concerned Action Now
(CAN): New Delhi
6 De, A (1997) Early childhood impairments - role of anganwadi workers in ICDS. Presentation by
Ex-Director of Social Welfare, Government of West Bengal (***check GC) to the ******.
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UCBR Project
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total freq
Age groups
1 -5 years______
6-10 years_____
11-15 years
16-25 years
26-55 years
>56 years______
%
IQ
58
117
118
146
128
20
587
Totals
20
20
25
22
3
w
The sampling method, with its reliance on key informants, did not successfully represent those
who are disabled and aged, particularly people with later-onset seeing difficulties. For some older
people, such impairments may be taken for granted, both by themselves and by other community
members (including key informants). In the community studies, on at least three occasions,
people with difficulties who were over the age of 65 were observed to be ignored by the key
informants. In discussion they themselves did not regard that they fell within the group of ‘persons
with disabilities’ as they differentiated between late onset impairments associated with old age and
persons with disabilities in general.
*** age distribution in cities
1.5.4 Socio-economic status
As described in section *, socio-economic status was assessed using two proxy socio-economic
indicators; housing material and occupation of household head.
Table 9: Socio-economic classification using housing materials as a proxy indicator
Visakhapatnam
Bangalore
Calcutta
Housing
classification
freq
freq
freq
%___
A___
A__
30
18
__ 1£
____35 ___
pukka________
____2Q
11
7
38
75
5
13
semi pukka
10
40
10
98
50
19
Z6
semi kutcha
38
__ 41
28
____ Z6
kutcha
55
____U
0
0
1
1
no shelter
0
0 I
_____
Z
___
1
missing data
____
Q_
_____
Q_
____
Q
_____ Q____
Total
198
100.0
200
100
189
100
The second proxy was household head’s occupation, and was classified into the groups
described in table *.
Table 10: Socio-economic classification using occupation of household head as a proxy indicator
Visakhapatnam
Bangalore
Calcutta
Work classification of
household head
unskilled labour
skilled labour/craft
petty business
machinery operator
freq
freq
69
59
32
15
35
30
16
8
97
36
26
6
%.
(valid
49 (54)
18 (20)
13 (14)
3/32
freq
82
40
17
11
%
43.4
21.2
£0
5J
7 -As data is missing for 20 of the respondents due to fieldworker error, the percentage excluding
the missing data has been included in brackets.
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UCBR Project
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clerical____________________
government employee_______
business__________________
pension___________________
Other requiring higher education
_________ missing data_______
Totals
3
a
1
4
Q
A
£
1
1
5
6
198
2
6
1
4
2
20
~200
1 (1)
3 (3)
1 (1)
2 (2)
1 (1)
10.0
22
9
Q
1
5
2
189
11.6
4^8
_a
£
Z6
1.1
As described in section *.* above, there is a correlation between these two proxy socio-economic
indicators. Tabulating occupation of household head (manual versus non-manual) and housing
materials (the pukka: kutcha system) gives a significant relationship in the three cities: Calcutta
(Chi2=11: df=1: p=0.00090): Visakhapatnam (Chi- =25.29143: df=4: p=0.00004): and Bangalore
(Chi2=10.38: df=3; p=0.015).
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SECTION 2
SUMMARY OF COMMUNITY STUDIES: NEEDS AND EXPERIENCES OF
PERSONS WITH DISABILITIES IN LOW INCOME URBAN COMMUNITIES
2.1
SUMMARY OF NEEDS
The specific needs of persons with disabilities and their families in low income urban communities
in order of priority are for:
1.
2.
3.
4.
5.
Work and income
Education
Appropriate medical rehabilitation
Inclusion in urban community development
Acceptance in the community
Many of the needs expressed can be related to improved socio-economic status, which is
common to many households in low income communities.
*The Disability Act 1995 divides the various issues related to the lives of persons with disabilities
into five broad categories, namely:
a)_ Education
bl Medical attention and health (physical rehabilitation)
cl Social security
dl Barriers to access - physical and social
el Economic rehabilitation.
These are presented without any priority. However, it is notable that several of the needs
expressed by persons with disabilities in the UCBR project fall into the categories in the Disability
Act. With regard to barriers to access, these form a major part of the frame for the discussion of
the findings of this report. To physical and social barriers (described below as ‘environmental’ and
'attitudinal' are added ‘economic’ and ‘structural’ barriers.
There are few if any similar studies of the needs of persons with disabilities and their families in
urban low income communities in India with which to compare this study. One study of needs is
described in Peshawaria et al (1995; p.79)g, who explored the needs expressed by families
(parents and siblings separately) of those with learning difficulties, using individual interviews in
which respondents ranked listed needs during individual interviews. The study found that the
needs which were most ‘endorsed’ by parents were for the following (with the ‘percentage
endorsement’ listed);
1. Government benefits and legislation (93.6%);
2. Vocational planning (89.0%);
3. Information [about the] condition (86.9%)
4. Future planning (84.4%)
5. Services (83.6%)
However, it is difficult to relate this data to the present study as the sample was quite different. As
well as being specific to “Mental Retardation”, Peshawaria et alg describe a sample of 218 parents
(from 120 families) of which 49.1% have education to degree level or above, and the sample
mean family income is over Rs.3000 per month. They also describe that 79 of the 120 families
were living in urban areas, and 41 of the 120 (34%) “were living in rural and slum areas”. Finally,
the sampled families were sampled through the services that they were already using. However,
it is of interest to note that Peshawari et al found that “as the education level of the parents
increases the reported parental needs decreased. Least educated parents (primary and below)
8 Peshawaria R, Menon, DK, Ganguly,R, Roy,S, Pillay,R, and Gupta,A. (1995) Understanding
Indian Families Having Persons with Mental Retardation. National Institute for the Mentally
Handicapped, Ministry of Welfare, Gol. GA Graphics: Hyderabad.
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UCBR Project
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were found to report significantly higher needs in areas such as ‘Information1, ‘Hostel’, ‘Financial’
and ‘Marriage’” (Peshawaria et al 1995; p.89).
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UCBR Project
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2.2
NEEDS AND EXPERIENCES OF WORK AND INCOME
"Money is everything. If we have that, then we will automatically get respect”.
Woman, 42, with moving difficulty following stroke. FGD1.9 Bangalore
i) Employment: The need for employment was clear. People in all three cities asked if the
fieldworker would help them to get a job, particularly as the fieldworkers introduced the project as
being on behalf of the Ministry of Welfare. There was however, little insistence in this demand as
unemployment was common for disabled and non-disabled people alike. Adults with moving
difficulties, particularly from polio, described how they were job seeking, and expressed the need
to find employment suited to their abilities; typically a job where they could sit down, in assembly
work for those with little education, or office work for those who had passed higher standards.
Office jobs were favoured by most unemployed people; non-disabled family members also wanted
to find a job in an office, even if they already did manual work. This competition reinforces the
need for education if persons with disabilities are to find employment.
ii) Job skills training: adults with disabilities interviewed expressed a need to learn job skills as
well as academic education to improve chances of employment. Some persons with disabilities
interviewed were still unemployed despite undergoing several types of training and they stressed
that the success of training should be measured in terms of finding economically productive work.
lii) Loans for self employment: In the absence of work, people sought access to loans to
provide start-up capital for small businesses. This included both for persons with disabilities, or
for family members, particularly of those with severe and multiple impairments.
In the latter
group, families described a need for income so to be able to support their disabled family member.
Some people, typically mothers, were supporting their disabled family member full time and as a
result were unable to go out and work. Some had considered starting a small home-based
business so that they could be available to support their disabled family member and also earn
some money. The major barrier to doing this was a lack of access to start-up capital. They were
unable to raise the money needed within their circle of contacts, and did not want to borrow from
local money lenders.
iv) Pensions: Some parents expressed direct financial needs, to help support the person with
disability and the rest of their family:
“Please give me some money or I’ll put her in a home. I earn less than Rs.500 per month,
and her father has never given me anything to help bring up his daughter”.
grandmother of woman, 25, with severe moving difficulty.
Some of those interviewed were aware of government pensions for persons with disabilities, and
requested assistance in applying for them as they did not know where to go, or expected that the
application would be difficult for them to complete.
Question 2.2.1: what are persons with disabilities’ experiences of work?
Of the 294 persons with disabilities over the age of 15 interviewed in the community studies, 34%
were doing paid work. None was working in segregated jobs or segregated environments
reserved for persons with disabilities: all were working in mainstream activities in the economic life
of low income households, such as keeping petty shops, home-based piece work, and rag
picking. The distribution of paid work by difficulty groups is summarised in the following table:
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UCBR Project
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Table 11: Number of persons over the age of 15 with disabilities doing paid work in three cities
Total
Not in paid
In paid work
difficulty group
work
64
31
33
moving difficulties - polio
82
51
31
moving difficulties - other
14
13
1
learning difficulty______
10
6
4
epilepsy_____________
35
23
12
speech and/or hearing
54
51
3
multiple difficulties_____
7
4
3
other difficulty_________
28
_________ 15
_____ 13
seeing difficulty_______
294
194 (66%)
100 (34%)
Column totals
Those with moving difficulties appear most likely to be in work. Persons with multiple difficulties
(severe and multiple impairments) were particularly unlikely to be in paid work.
In Calcutta and Visakhapatnam, men with disabilities were significantly more likely to be doing
paid work than women. Earning money was expressed as a need for men and women. During
qualitative interviews, many women with disabilities reported that they do household work, even if
they have difficulty in moving around the house or other difficulties.
answer: 34% of adults with disabilities were doing paid work, all in mainstream
occupations. In two cities, men were significantly more likely than women to be
working.
Question 2.2.2: what are the barriers to work?
Of those who were working, most described the experiences common in mainstream, though low
paid jobs. Some expressed that they were unable to do labouring jobs, and described that
employers had refused them a job because they were disabled. Problems at work related to
peoples’ disabilities were rare, partly because most were either ‘self employed’ or employed in
small businesses close to home and so well acquainted with their fellow workers, who were
family, friends, or neighbours. A handful of adults across the three cities described having been
paid less for their work than non-disabled workers. A few of those with learning difficulties were
described as having inadequate skills for work that they had tried.________________________
answer: barriers related to difficulties in labouring jobs, or lack of appropriate skills,
few described barriers related to the attitudes of employers or other workers.
Question 2.2.3: is begging a common means of earning money?
Of the 587 persons with disabilities interviewed in the three cities, four described that they begged
to earn money. All four stated that it is difficult to beg enough money to live on. None begged
through choice; it was their only means of earning money. Two had tried other means of earning
money but because of barriers to other work had been forced to beg.
“I studied in a mainstream school in Bihar until I was 8, but then had the accident. Since
then I go to beg on the roads and earn Rs. 10 or 20 per day., this is the only source of
income for the family. I don’t go out to beg everyday, it depends on my mood”.
boy, 15, with moving difficulty. Calcutta 085
In this study, there is no evidence whatsoever to suggest that impairments had been caused
deliberately in order to provide persons with disabilities for organised begging operations, or that
persons with existing impairments had been recruited into such operations.
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answer: begging is not a common means of persons with disabilities earning money
Question 2.2.4: what are experiences of training for work?
In the three cities, 46 of the 294 persons with disabilities over 15 interviewed had received training
for work. 38 of these had been trained in the mainstream workplace in which they worked. The
number of people who had been trained in vocational training for persons with disabilities was far
less than the number of mainstream trainees: just 8 of the 46 had received segregated training.
Like work opportunities, routes into training were also those of the mainstream such as through
relatives, and friends. Of the four that had received training in vocational training centres in
Visakhapatnam and Bangalore, none had found work after training. For a full breakdown of the
places in which the persons with disabilities had trained refer to appendix *).
answer: 15% of adults interviewed had undertaken training for work, mostly in mainstream
workplaces.
^Question 2.2.*: what are experiences of the Vocational Rehabilitation Training Centres (VRCs)?
Vocational Rehabilitation Training Centres
The Ministry of Labour, Government of India, is concerned with the economic rehabilitation of
persons with disabilities through the network of Vocational Rehabilitation Training Centres
(VRCs), The Ministry reports that the capabilities of persons with disabilities are assessed,
vocational training suggested or imparted, and persons with disabilities rehabilitated either in
regular jobs, self-employment, or any other gainful employment. VRCs also organise special
camps to look into aspects of the labour market, rehabilitation needs, assessment of individual
persons with disabilities and involvement of NGOs. VRCs also undertake experiments in
community based vocational training and rehabilitation. In 1997 there were 17 VRCs in India. 2 of
which were for women only. VRCs are located mostly in state capitals and “act as models for the
State Governments to set up more centres depending on their needs-’. At 7 of these centres, skill
training facilities have also been provided as an extension of rehabilitation services. The Sixth
Plan period covered the rural population and 11 Rural Rehabilitation Extension Centres were
provided at the Block Headquarters level, attached to 5 selected District Rehabilitation Centres
(DRCs). Each year the 17 VRCs are reportedly able to rehabilitate 7,000 persons with disabilities,
an average of some 412 per centre.
An example of a VRC is that in Calcutta. It is situated near Salt Lake on the Eastern edge of the
urban area. It offers centre based training. There are no hostel facilities and training requires
daily attendance. An allowance of *Rs.125 (check current) is available for trainees. The VRC
undertakes a vocational assessment of persons with disabilities, and helps them to choose a
trade, and is reported to assist them in finding placement on completion of training (*** more
details to come).
The UCBR Project did not specifically examine training under the VRCs; rather, it approached
training from a community based perspective by randomly sampling persons with disabilities in
low income urban communities in three cities and recording their experiences of training, if any.
In the three community studies, 46 (16%) of the 294 persons with disabilities over the age of 15
years who were interviewed had received training for work of some sort. However, none of these
had undergone training at VRCs.
9 Baquer, A and Sharma, A (1997) Disability: Challenges Vs Responses. Concerned Action Now
(CAN): New Delhi
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answer: None of the 294 adults with disabilities sampled had undergone training at the
Ministry of Labour’s Vocational Rehabilitation Centres for Handicapped (VRCsh
what are persons with disabilities’ experiences of government welfare
provision?______________________ _
The community studies indicate that the coverage of government welfare benefits is small and
varies in quantity and quality between cities:
Question 2.2.5:
Bangalore: 16% of persons with disabilities had obtained welfare benefits. Seven children had
government scholarships; 25 people had pensions; and 1 had a place in a government remand
hostel. One person reported that they had a bus pass.
Calcutta: 29% had obtained welfare benefits. 1 government disability scholarship; 3 government
pensions; 23 handicapped cards; 8 disability certificate (but no card); and 8 bus passes.
Visakhapatnam: 32% had obtained welfare benefits,
government pension.
58 had a bus pass.
None had a
Gender and socio-economic status have no apparent effect on access to these welfare services.
In theory, medical certificates and handicapped cards are the instruments with which to access
other benefits but in many cases they are ends in themselves, as no material benefits are gained.
answer: 25% of persons with disabilities have accessed government welfare benefit.
Access varies between cities.
Question 2.2.6: what are the barriers to government welfare services?
Many of those interviewed did not know of the existence of benefits, or described a lack of
information about how to access them. After this come the barriers experienced during
application. These were non-availability of services such as bank loans; the negative and
obstructive attitudes of some government employees; and unofficial costs of availing a service,
including bribes. Other people were aware of the limited services available with a certificate and
card and did not think it worthwhile to try and get a medical certificate.
The government welfare provisions which are theoretically available to persons with disabilities
are: bus and train passes; disability pensions; school scholarships; bank loans for small business;
and registration at special employment exchanges for government jobs reserved for persons with
disabilities. Application for these demands a medical assessment at a government hospital. If the
degree of disability is assessed as being of 40% or over, the individual can apply for a
handicapped card issued by the Department of Social Welfare.
In Calcutta 12% of respondents had a handicapped card. 8 others had a disability certificate but
had not got a card. Application is shaped somewhat by age (for example, babies, travelling free
on busses, are not usually regarded as needing to apply for a bus pass) and degree of difficulty
(those assessed as under 40% disability do not get a card) but this coverage is still surprisingly
low.
Respondents described numerous barriers to accessing government services in general. The
example of medical certificates indicates the barriers to all government welfare services. Barriers
can be classified into economic; environmental; structural; and attitudinal.
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i) Economic Barriers:
® bribes demanded by government employees: persons with disabilities in all three cities
described being asked for bribes during application. For example, one man made the following
allegation:
“I got a Handicapped Certificate from Barrackpore Hospital, but had to pay Rs.500 for
this. The money was shared by the tout and by the doctor. I request that you take action
against such government servants and arrange for me to get the money back. In the
handicapped office the staff don’t want to listen to us. How can we rely on government if
we are handicapped? None of the staff are concerned about us and they treat us like
dogs”.
man, 25, with moving difficulty. 145
® payment of touts: Paying a local tout to access government services was a means of
overcoming the barriers described below.
® cost and time taken for multiple visits to government offices
ii) Environmental barriers:
® difficult physical access to government offices.
iii) Structural barriers:
® absence of other supporting documents such as ration cards.
® no information about where to apply.
® medical assessment of less than 40%.
iv) Attitudinal barriers:
® negative attitudes of government employees
“I have very little sight in my eyes. I use glasses, and with their help I can see up to 5 feet
away but only shapes. I once went to a government office to apply for a pension and I
had the medical certificate showing over 40%, but they chased me out, saying that they
didn’t believe that I am blind”.
man, 20, with seeing difficulty. Bangalore 139
Thus, application for a disability certificate and handicapped card is difficult. These barriers are
multiplied by the fact that cards have to be renewed every few years, thus the same barriers are
met again. Experiences specific to other welfare services are described below:
Bus passes: Many of those who had got bus passes reported that they are not allowed to use
them on government buses. They were unsure of their rights and so rarely argued when a bus
conductor ignored their pass and demanded money. Some parents had obtained bus passes for
their disabled children, but had never used them as their child had to be carried and had become
too difficult to lift onto the bus.
Loans for self employment: Of the 587 persons with disabilities interviewed in the three cities, 3
had secured a loan for income generation. All three were exceptional cases; they were educated
men with considerable family resources. Others persons with disabilities had considered the idea
of a loan but did to know where to apply. Officially, bank loans are available to persons with
disabilities. Loans for family members of persons with disabilities are unavailable.
Government pensions: Pensions are officially available for those over the age of 18, and those
under 18 who are not in education. Qualification demands a disability certificate showing the
appropriate percentage of disability as assessed by a government doctor (usually 40%). Overall,
of the 237 adults interviewed, 28 (10.5%) had obtained a pension. In Calcutta, 4 of 107 adults
had a pension; in Bangalore, 25 of 51 had a pension; in Visakhapatnam, none of the 79 adults
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interviewed had a pension. In Calcutta two of the four with pensions had accessed other
government facilities, and were doing paid work. This, and the account of how they got pensions,
suggests that pensions are not always distributed equitably:
“I earn Rs.200 to Rs.300 per month. Rs.200 comes from tuition which I do for local school
children and Rs.100 from my government pension as a handicapped person... In the
evening I go to a computer class for training... I didn’t face any problem in getting the
handicapped pension. I got my first pension 6 months after applying and have been
receiving the pension since the last one year. I have a contact in the Writers’ building and
so I have got it very easily. The staff in the pension office said to me: ‘You are very lucky
to get it so easily - you have got it ahead of the 500 applicants waiting to receive the
pension’”.
man, 24, with moving difficulty. Calcutta 133
A further barrier in Bangalore was the demand for payment by postal workers in return for
delivering the pension. People paid this as they feared they would lose the pension if they did not.
Registration at Special Employment exchanges: In Bangalore and Visakhapatnam none of
the persons with disabilities interviewed had registered at the special employment exchange. In
Calcutta, of 9 of the 113 adults interviewed, had registered.
However, none of the adults
interviewed in the three cities had gained employment through this provision. There were reports
of bribes being demanded for applications within the government disability quota:
“Somebody came and told me that there was a job under the disabled quota in the Indian
Railways, and they told me to apply. The people wanted a lot of money for the job and
since I didn’t have that much money I couldn’t avail the chance. I spend most of the time
at home just sitting”.
man, 32, with moving difficulty from leg amputation. 159
answer: the coverage of government welfare provision is limited and it does not reach
those most in need. Welfare provision is characterised by barriers to access. There is
a general lack of information about benefits, and for those that do apply, the poor
attitudes of government employees, and the bribes that they demand, are the greatest
barriers.
2.3
NEEDS AND EXPERIENCES OF EDUCATION AND LEARNING
In discussion in the three cities, education was explicitly linked to increasing employment
opportunities and socio-economic independence. Some considered the need for education to be
greatest for children with disabilities as they would be less able to find manual jobs than their non
disabled peers:
“He sometimes helps in sweeping, cooking and washing utensils. I am interested to
educate him, as only if he is self dependent economically can we think about his
marriage”.
mother of boy, 15, with moving and hearing difficulty. Calcutta 185
A few persons with disabilities stated the need for financial assistance in education, but few knew
of, or mentioned government scholarships. The parents of many of the children with moving
difficulties want their children to do well at school. Families of children with severe and multiple
impairments expressed needs relating to more fundamental learning, such as self management
skills, including toiletting, washing, and feeding, and basic education skills, to enable the person
with disability to increase their control over their own life. A few family members said that this
would improve their loved ones’ quality of life in the home, but more hoped that something could
be done to reduce their dependence on the time and effort of other family members. This would
allow family members to do other things, particularly go out to work. Other families described
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needs for help in addressing children’s unacceptable behaviour. Two major concerns were
described. Firstly, violent behaviour, in which someone else might get hurt but equally resulted in
the person with disability being beaten by others. Secondly, the safety of young girls and to a
lesser extent boys who roamed about the community. In all three cities, some families resorted to
tying the person with disability up to stop them “getting into trouble”.
Question 2.3.1: what are the experiences of persons with disabilities in education?
a) integrated Child Development Services (ICDSl’s anganwadi centres
In 1997, the ICDS network was reported to consist of 3097 project covering nearly 70% of India’s
community development blocks and 260 urban slum pockets. Baquer and Sharma (1997) report
that:
Integrated Child Development Services
“In spite the conviction of policy and planners, children with disabilities remain marginalised in
the ICDS programme and its activities. A sizeable number of children often remain undetected
and there is little co-ordination between health and ICDS functionaries leading to sporadic efforts
in immunisation, health check-ups and educational activities.
There is no integration in the anganwadis and children with disabilities grow up in an
environment indifferent to their real needs. The anganwadi worker has limited understanding,
skill and knowledge in arranging pre-school activities and her limited sensitivity is unable to
integrate the children with disabilities in the pre-school activities. Due to its reliance on voluntary
efforts, ICDS has been able to keep down its implementational costs but the low honorarium paid
to the anganwadi workers is a major impediment to sustaining motivation.
They feel
overburdened with responsibilities and tend to concentrate on services that are more closely
monitored, such as supplementary nutrition distribution, immunisation etc. A recent study by the
National Institute of Nutrition indicated that 40-50% of anganwadi workers in Andhra Pradesh
could not distinguish backward children from normal with respect to their psychological
development
in three months training of anganwadi workers, only two days are allotted to orientation on
symptoms of disability, suitable play activities, availability of aids and appliances for them.
However, the present arrangements of training remains localised to the areas which are services
by the 11 institutes that handle their training. Disability has been introduced into the second
phase of the three phase sandwich programme.”
______________________________________________ Baquer and Sharma (1997; p. 114-115)
Available descriptions of the role and practice of anganwadi workers with regard to children with
disabilities, including training material for anganwadi workers, focus on prevention, identification
and referral. Indeed, accounts stress the limitations of the anganwadi worker in the rehabilitation
process:
"[the anganwadi worker] has her own limitation. Unless she gets the support services for
referral, she will not be successful. Further,
cannot should not be expected to
provide rehabilitative service for the management of the mentally retarded,
hearing/speech impaired. She can detect, prevent, educate and refer but can never treat
and rehabilitate”
(De 1997—)
This study did not specifically address the coverage of children with disabilities by anganwadi
centres under the ICDS scheme. The sampling method used in the community studies included
persons with disabilities of all ages, therefore was not particularly suited to address questions
specifically addressing the service use of pre-school children as the sub-sample falling in the
— De, A (1997) Early childhood impairments - role of anganwadi workers in ICDS. Presentation
by Ex-Director of Social Welfare, Government of West Bengal (***check GC) to the ******.
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under 6 age group was just 9% of the total sample. However, some children between the ages of
2 and 5 years inclusive, which includes the core group served by anganwadi centres, were
included in the random sample and thus some data is available.
*****lf available comparison of list of community sample communities and coverage of the
anganwadi centres in the cities *****
In Bangalore, of 33 children with disabilities between the age of 2 and 5 inclusive, 24 had received
no educational input. Of the 9 who were attending some sort of education service: 3 were
attending anganwadi, (1 child with moving difficulty and epilepsy: 1 with polio related moving
difficulty: 1 with epilepsy) 4 were attending private nurseries: 1 was attending mainstream school
(standard 1) and 1 was attending a special school.
Of the 15 children with disabilities in the Calcutta sample who are aged between 2 and 5 years
inclusive, 2 had some attended some form of education (one 5 year old girl with moving difficulty
following burn injuries was in standard one of a mainstream school: one 5 year old boy with
moving difficulty following polio attended an informal class in a local Congress club). 13 of the 15
had never attended any form of education . This group included 12 children aged between 3 and
5 years - the core IDS age group.
In Visakhapatnam, none of the 7 children sampled in the 2 to 5 age group had ever attended any
form of education service. This group includes 2 with polio, 1 with learning difficulties, and 4 with
multiple difficulties.
In summary, of 55 children in the age group of 2 to 5 years inclusive which is the expected
coverage age group of ICDS, 44 (80%) had never used any educational service. 4 children (all in
Bangalore) had attended anganwadi.
b) Primary education:
Primary education officially extends from over 5 to 10. However, children often register later and
finish later than 10, or drop out at any age. Therefore, examination of coverage of education for
persons with disabilities focuses on those over the age of 5, and on a current school age
population aged between 5 and 15 years. All persons with disabilities over 5 years old were
asked “have you ever been to school?”. 309 (57%) of the 540 people had been to school at some
time. 43% had never been to school. Comparable data for urban children in general is scarce.
Percentage data for those living in low income urban communities is unavailable. The average
figure for all children in the 5 to 14 age group in urban West Bengal, Karnataka and Andhra
Pradesh combined can be crudely estimated for 1987-88 as 72%11. Thus, it appears that children
with disabilities are less likely to have been to school than the population in general.
With regard to the learning needs of those with multiple and severe impairments, the three
community studies found that pursuit of rehabilitation is typically medically oriented and involves
considerable effort and cost, but rarely meets their real needs, particularly as age increases. This
disparity between need and service delivery is most apparent with regard to self management
skills. Few respondents had received inputs for these needs: rather, their experiences of medical
rehabilitation focused on diagnosis, mobility (where appropriate), and prevention of further
deformities. Positioning for improved function was described by some, but this was limited to
sitting and not associated with activities. Learning needs relating to unacceptable behaviour were
unaddressed.
11 Calculated from data of National Sample Survey Organisation, Government of India (1992). In
Report of the Education Commission, Government of West Bengal. August 1992.
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® cost: costs may be incurred for purchase of uniform, books, and private tuition.
ii) Environmental barriers:
® poor physical access: a few people described transport and mobility as a barrier. Some with
moving difficulties described difficulties in physical access while at school.
lii) Attitudinal barriers:
® lack of motivation to complete education: Other persons with disabilities from poor families
leave school when they lose interest and there is little motivation from teachers or parents to
encourage them to continue with studies.
® parents’ perceptions of disability as a barrier to school attendance: some persons with
disabilities had never been to school as their parents had not thought education possible for
children with disabilities. When asked about education, they expressed surprise that anyone
would ask, as their child was "too disabled” for school.
® negative experiences at school: Others had left school because of negative experiences.
These included abuse by other students and dissatisfaction with the quality of education.
“I faced psychological harassment when I used to study in school. My classmates teased
me, they would to say, 'You are not going to get married because of your deformity’. They
also make fun of my difficulty, so I became very irregular in attending classes. My mother
complained about it to the school principal who punished those children but with no
positive result. In fact the teasing increased after the complaint”.
woman 28, with moving difficulty from cerebral palsy. 018
® exclusion from school because of difficulties: A few people in each city had been excluded
from school because of their difficulties:
“He can’t say a word but can explain with the help of signs. Though he can’t hear, when
an aeroplane flies over he looks up to the sky. He has even worked in a garage for last 2
months. He goes to his workplace alone. He carefully crosses the road, also goes to
local shops. He leaves for work at 7am and comes back home at 5pm. He wants to study
but teachers don’t want to take him in the local school”.
father of boy, 8, with speech and hearing difficulty. 146
iv) Structural barriers:
® children in mainstream school without any appropriate support: Some persons with
speech and hearing difficulties were in mainstream school without any additional support. Their
experiences varied; some appeared to be managing fairly well, others were not:
“the teacher complains to me about my speaking problem. She hits me everyday”.
boy, 16, with speech difficulty. FGD2.1
® unacceptable behaviour: A few children with learning difficulties had apparently discontinued
because of their unacceptable behaviour. Mainstream schools did not have any means of
addressing behavioural difficulties and thus teachers, or parents in response to teachers’
complaints, had excluded the children from school. Inputs for modifying unacceptable behaviour
were unavailable at home, and so caused problems there and in the community.
Question 2.3.3: what are the barriers to special schools?
The largest barrier to special school attendance is the small availability of special school places.
Beyond this, some barriers to mainstream schools also apply to special schools. For example,
some children in special school dropped out for no obvious reason other than a lack of motivation
on the part of parents, teachers, and the child.
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i) Structural ii) economic and iii) environmental barriers:
® distance and cost: The nature of special schools’ catchment means that most children have
to travel some distance from home. This puts additional stresses on school attendance,
particularly for children who are less able to walk long distances, use public transport, or travel
unaccompanied. The cost in time and money of such travel is also a barrier to attendance,
particularly for poor people.
® cost: In all three cities, some parents reported that they had sought admission to special
schools for their child but had been put off by the fees charged.
ii) Attitudinal barriers:
® unhappiness with quality and type of education offered:
“She used to go to a local special school, but they didn’t take proper care of her, so she
has discontinued”.
mother of woman, 18, with learning and speaking difficulty. 054
Several parents of people with communication difficulties reported that they had tried special
school but had not been satisfied with the education offered. They thought that their child was
‘less disabled’ than others there. A couple of parents of children with learning difficulties had
removed their children as they felt that they were learning unacceptable behaviour from other
children, or losing their self help skills.
® children excluded because of behavioural difficulties.
® negative social impact of segregation: some parents expressed concern that special school
would make their child segregated from the mainstream of life:
“She is a ‘slow learner’. I feel very bad that my child who was in a normal atmosphere
has now come to a special school... they should have extended help to her in such a way
that she could have got back into the mainstream.... this place caters more for the child
with severe problems...my daughter is borderline, but it has made her into a special child
instead of a normal child”.
mother of woman with learning difficulty, 21, Bangalore
answer: The most important barriers to special school attendance relate to their limited
coverage, and the distance from home of such centre-based institutions.
2.4
NEEDS AND EXPERIENCES OF MEDICAL REHABILITATION
Medical rehabilitation was not the first priority need expressed by persons with disabilities and
their families in low income communities. However, because of the absence of other services to
address priority needs for income and education, for many people, their only experience of service
use in relation to their difficulty was in the medical domain. Most of the persons with disabilities
and their families had, at some time in their lives, felt a need for medical rehabilitation, although
needs typically changed with age:
• The parents of young children with disabilities often focused on a possible cure.
• This was followed by an expressed need for practical information about their child’s
impairment, and what their expectations should be in terms of ability and therapy.
• Then parents wanted inputs which would increase their child’s functional abilities, to
participate more in mainstream life.
These needs were generally expressed by parents during their child’s first 10 years of life. After
this, expressed needs for medical services declined. Some older people and their families
expressed ongoing needs, such as for inputs for mobility, and for medical management of
epilepsy, but these were rarely prioritised in discussion. They had generally reached a point
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where they had given up hoping for a cure, and had also reached an understanding of what types
of medical rehabilitation are available to people from low income urban communities. After this
point in life, most expressed non-medical needs.
Many persons with multiple disabilities and carers had spent their entire time in each other’s
company, with little external interaction. It was unsurprising that both need additional sympathetic
social interaction. For some mothers who looked after people with multiple difficulties, the study
fieldworker was the only person whom they had spoken to about their needs for a long time. Even
those with other family members did not necessarily get any support from them. In fact, the
presence of a person with disability might cause additional family problems. There was an
obvious need for emotional support and counselling for some persons with disabilities who felt that
they were a burden on their family, as well as carers who were depressed or lonely. The mother
of a young woman with moving and learning difficulties broke down in tears when she described
her circumstances:
“She sits down in the room the whole day. She is totally dependant upon me, she uses
the bed pan and I have to help her to move about. I bathe her in the kitchen by carrying
her, she is too heavy and difficult for me to carry outside. The other tenants avoid mixing
with us because they don’t want to see her. I can’t leave the house because of her. I get
very lonely. I have four daughters and two sons. My sons live in the same house as us
but don’t have good relations with me”.
mother of woman, 23, with moving difficulty and learning difficulty. 024
answer: needs for medical rehabilitation can be summarised as i) appropriate
information, ii) improved function, and iii) emotional and social support.
Question 2.4.1: what do medical services offer persons with disabilities?
At first contact with medical services, they were usually offered assessment and diagnosis.
Beyond this, what medical services offer is dependent on difficulty group.
moving difficulties: services address people’s impairments through exercises to prevent
further deformity; surgery; and the provision of aids and appliances to improve mobility. In the
past, other therapies such as electric currents to stimulate affected limbs has been part of
service provision in government hospitals.
speech and hearing difficulties: assessment and possible referral for a hearing aid.
epilepsy: investigation and prescription of anti-convulsants.
seeing difficulties: assessment, surgery if appropriate.
learning difficulties: diagnosis.
Question 2.4.2: what are persons with disabilities’ experiences of medical
______________ rehabilitation?__________________________________________________
Persons with disabilities were asked what services they had used in relation to their difficulty.
This question was specific to services for persons with disabilities; thus, mainstream schools are
not included here. The coverage of rehabilitation services was as follows:
Table 14: Proportions of persons with disabilities using different types of rehabilitation services
_____ % of sampled person with disabilities using service type_____
welfare
special
special
medical
city
services
employment
education
rehabilitation
29
7
6
92
Calcutta
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Bangalore
Visakhapatnam
86
87
8
18
1
2
16
31
Overall, 88% of persons with disabilities interviewed had used medical rehabilitation services in
relation their difficulty. Medical services used for other reasons (i.e. not related to an individual’s
difficulty) are not included here. It has been suggested that much of this service use, such as
attending government hospital OPDs and private doctors, was not of ‘rehabilitation services’:
rather it was 'medical intervention’, and thus does not belong in this examination of medical
rehabilitation services. However, for the purposes of this study of the service use of persons with
disabilities from low income communities, all services which persons with disabilities and families
described as being used ‘in relation their difficulty’ are included. It has also been suggested that
‘rehabilitation’ only begins after such medical intervention. However, in this study, such ‘medical
intervention’ was, for many persons with disabilities, their only contact with services used in
relation to their difficulty. In rehabilitation terms, any such service use is at least a potential
opportunity for communication of appropriate information.
Of the difficulty groups, the largest group of people not consulting a medical rehabilitation service
was that of speech and hearing difficulty. Most of the persons with disabilities interviewed had
sought service in government hospitals. Many people had only ever used medical services, and
hospitals were the only place known in which to seek services. This is in spite of the fact that the
priority needs described are not medical. Of all the persons with disabilities encountered, less
than 5% had used NGO organisations providing services for disabled people (note that this refers
to the 587 persons with disabilities in the community studies’ use of all NGO services in their
home city, and does not refer only to use of the NGO services evaluated in the UCBR Project).
Experiences of medical rehabilitation vary according to the type and degree of difficulty, but there
are common themes. The pattern of contact with medical rehabilitation over the life span of a
person with disability was generally an intensive pursuit of a cure, followed by increasing
frustration while trying to use available rehabilitation services, before ending service seeking
altogether. This was usually because of lost faith in service options, rather than the logical end
point of a time-limited rehabilitation process.___________________________________________
answer: medical rehabilitation services had been used by 88% of those interviewed. Most
service use took place at government hospitals, typically early in a person’s life. Less than
5% had used NGO medical rehabilitation services.
Question 2.4.3: Do medical services meet expressed needs?
i) Meeting the need for appropriate information: Parents’ expressed need for a cure for their
child’s impairment cannot be addressed by medical rehabilitation services. However, parents’
disappointment on realising this was exacerbated by the fact that the information about their
child’s impairment given to them by medical service providers was unsatisfactory. Parents
reported that they had been confused about their child’s impairment and difficulty, and particularly
what they could expect in the future. Medical practitioners had given conflicting advice, and
confusing inputs. A common example was that doctors had said that ‘nothing can be done’, and
then prescribed medicines, typically tonics and vitamins. In the short term, frustrated parents
were likely to seek alternative medical opinions. In the long term, many abandoned their attempts
to seek rehabilitation inputs, medical or otherwise. Parents’ frustration was vivid:
“We hear that government hospitals provide wheelchairs but we don’t get them. We have
visited NRS Hospital several times but they have only asked us to do exercises and
haven’t given us any medicines. At one instance I was about to smack a doctor but I
stopped myself, thinking that they may take me to court. I swore and shouted ‘If you
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know that you can’t do anything, tell us, don’t just suggest exercises. Then we can go
somewhere else for treatment’”, mother of girl, 8, with moving difficulty. FGD.2 Calcutta
In some cases, information was so limited that parents considered that diagnosis was the end of
the medical rehabilitation process. A lack of information was also experienced by some of the
seven people with epilepsy interviewed. Although they had been prescribed anti-convulsants, at
least two had stopped taking them and had increasingly frequent fits. They had not received
adequate information about fit management; their families had not had information about what to
do during a fit. In summary, there is very little evidence to suggest that medical rehabilitation
practitioners give appropriate information to poor people.
ii) Meeting the need for improving functional ability: Improving function, such as mobility and
hearing, is the key aim of much of the medical rehabilitation. This is apparent from the importance
placed on interventions such as physical management exercises, surgery and provision of aids
and appliances. It is impossible in the current study to state categorically what the impact of these
interventions is on mobility and avoidance of further impairment.
a) Physical management exercises: Physical management exercises had been advised for
virtually all of those with polio who had sought medical rehabilitation services and for some with
other moving difficulties such as cerebral palsy. Usually, parents had been told to bring their child
regularly to a centre to have physical management exercises performed by a therapist.
Descriptions of exercises indicate that most are passive movements and exercises were not
related to every day activities. A few people had been shown exercises to perform at home; few
reported that they had continued doing these for any sustained period and the majority had never
done exercises at home. The lack of adherence to physical management exercises suggests that
their current provision by medical rehabilitation services does not meet the needs of persons with
disabilities and parents.
b) Surgical Interventions, many of those with moving difficulties from polio reported that they
had had corrective surgery, particularly in Visakhapatnam. Again, it is not possible to comment on
the effectiveness of surgery with the small number of respondents. Some had obviously benefited
from surgery, but the majority of those with moving difficulties who had had surgery recounted that
they had undergone surgery with no positive impact on mobility. Others had been advised to
have surgery but had refused to comply, fearing that the operation would go wrong, or had
received insufficient information about the aims and extent of surgery:
“We went to the hospital. They said an operation is necessary and also gave electric
shock treatment and massage, but I got scared hearing about the operation because I
thought that they will amputate his leg, so we stopped going there”.
mother of boy, 4, with moving difficulty from polio. 143
c) Provision of aids and appliances: The supply of aids and appliances constitutes a large part
of existing rehabilitation service provision. Callipers, crutches, and wheelchairs had been
supplied to many of those with moving difficulties in the three cities. These came from a variety of
sources, but the majority had been supplied through hospitals. During the three community
studies, it was striking that very few of the persons with disabilities were using them at the time of
interview. The aids most commonly seen in use were crutches. Callipers were almost never
seen in use. Most of the people who had got aids were now managing their mobility without them,
by anything from crawling to hand-to-knee walking, although many reported in qualitative
interviews that they had been issued with callipers, and wheelchairs. Across the community
study, negative accounts of aids and appliances outweighed positive. In all three cities, some of
the aids supplied had never been used as they had never been appropriate to the individual’s
needs. Others had been used briefly, but had become inappropriate:
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“I got a wheel chair from a club in 1992... now the wheelchair is of no use; look [points] we
dry clothes on it now. I can’t control the back of the wheel chair because I have hardly
any strength in my hand, so I don’t use it”.
man, 20, with progressive moving difficulty. 022
“I was given an artificial limb 7 or 8 years back from Medical College, but I cannot use it
because I cannot strap it to my leg since I don’t have enough strength in my hands - when
I was 7 years old, I fell into a drain and broke my elbow - we didn’t plaster it 2% years
back my right wrist was fractured and was not plastered. When I ask my son to help me
to put on the artificial leg, he doesn’t do so and tells me that it is my headache”.
woman, 50, with moving difficulty. 120
Other aids were rejected as they broke, or were not properly adjusted and uncomfortable:
“From National Institute for the Orthopaedically Handicapped I received a free calliper but
I couldn’t use it for more than 1% month because of pain in my leg... I also received a
wheel chair and crutch from Congress Party, but I don’t use it because I want to be self
sufficient... I don’t really need them anyway. But I lend the crutch and wheel chair to
people who need it”.
man, 24, with moving difficulty. Calcutta 133
Qualitative information indicates that most aids are not regarded as useful enough for people to be
motivated to try and get them replaced.
For persons with severe and multiple impairments, appropriate aids such as seating aids had
rarely been discussed or supplied. Most advice regarding such aids was stereotyped and given
with little thought to the circumstances of poor household.
“...they said do physiotherapy and even asked us to make her stand in a water tank filled
with sand... from where are we going to get a water tank? We hardly have enough space
in this room anyway... they asked us to make special shoes as well... what is the use of
these things?... she crawls around, and either sits or sleeps for the whole day. She
spends most of the time with me and she cannot say when she wants to shit, and does so
in her panties... what can we do about that?”.
grandmother of girl, 4, with moving difficulties. Calcutta 147
The experience of hearing aids is similar. Beyond treatment for ear infection, the only service
offered to this group is assessment and a hearing aid. Hearing aids are unsuitable for those who
have total hearing loss, yet some of this group had been advised to get an aid. Some aids issued
did not work. Obviously, in both cases, a person with disability’s need for functional improvement
is not met. Others, whose hearing could be functionally improved by a hearing aid, were not
having their needs maximally met by the aid as no appropriate educational support was available.
Such support is only available in some special schools, and the coverage of these is small. Thus
even if all people had the type of impairment which a hearing aid could help, their need for
improved communication is unlikely to be maximally fulfilled as the coverage of educational
support is so limited. Moreover, medical rehabilitation services do not integrate with educational
services.
If aids and appliances are supplied free by government hospitals but remain unused, they
constitute an expenditure that is neither functional or cost effective.
This inappropriate
expenditure was shared by some low income households which had paid for their unused aids
and appliances. Cost is also a barrier to the use of hearing aids. Although they are available free,
several of those interviewed had been assessed and advised to buy a hearing aid, sometimes as
government supplies were unavailable. Considerable costs are also associated with maintaining
an aid:
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“About 7 years ago I had a buzzing sound in the ears and visited NRS hospital... the
doctors sent me to the Directorate of Social Welfare for hearing aids, who gave us the
address of a shop and they supplied a free aid, although I had to wait for about 6 months
or 1 year. Previously I used to work in a household as a maid and earned Rs. 125. Now I
have left the job as I can’t follow what people are saying. The hearing aid was free at the
start, even though it took a long time to come, but over the time it has cost me lots of
money. I have to change the wire of the hearing aid every 3 to 6 months which costs
Rs.50... and the battery every 2 months depending upon its use, this costs Rs.4.75 per
battery. Presently the volume control switch is not working properly... to repair it one of
the shopkeepers said that the parts required will cost Rs.350 which I can’t presently
afford. I am having problems... even with it on a person has to speak loudly so that I can
hear, and I can’t hear at all without it. These days, I sit quietly and go to bed very early. I
prefer not to talk to people in the neighbourhood or have them visit me now because if
someone say something to me I may not follow and say something which doesn’t have
any relevance... people also try to avoid me. In fact some people make fun of me because
I give them irrelevant answers”.
woman, 65, with hearing difficulty. 038
There were also people who had never wanted aids and appliances. Some were rejected as they
or their families did not like them. Callipers were described by some respondents as ugly, and as
bringing more attention to that person’s difficulty. Similarly, some children did not use their hearing
aids as they were teased by other children.
Overall, the effectiveness of the provision of aids and appliances to address needs for
improvement of functional abilities is in doubt. Aids and appliances constitute a major part of the
medical rehabilitation services in the three cities, and yet it appears that many of the aids supplied
have little functional impact. This implies that their supply is not effective, which is a concern
given their central place in rehabilitation policy and the fact that they constitute a considerable
cost to the Ministry of Welfare, to rehabilitation organisations, and to persons with disabilities
themselves. Finally, the priority needs of persons with disabilities after the age of 10 years were
largely centred on education and work. Medical services, which are the most commonly used
services for persons with disabilities in the three cities, do not address these, and rarely integrate
with service providers that do.
answer: qualitative data indicates that persons with disabilities experiences of medical
rehabilitation are characterised by a failure to meet their needs for appropriate
information, or for improved functional ability. In each of the cities, a need for
monitoring and evaluation of intervention outcomes was apparent.
Question 2.4.4: What are persons with severe and multiple impairments’ experiences of
_____________ medical rehabilitation?______________________________________________
Common themes in the experiences of medical rehabilitation of people with severe and multiple
impairments and their families are summarised below. They evolve and change as the child gets
older:
• Parents notice baby’s difficulties at an early stage and seek medical help.
• Doctor tells them “wait and your child would improve” or “nothing can be done":
• Parents pursue cure from several places.
• Different doctors prescribe ‘medicines’ but there is no improvement.
• Mother continues service seeking, and is advised to bring her child regularly to central
service for exercises to be performed, which she initially tries to do.
• Mother finds travelling to centre-based service too difficult as child gets heavier and she is
less able to carry him. Also she may have other children to look after.
• Mother becomes disenchanted with service seeking as there is no appropriate help for
skills training, no emotional support, and she can see no improvement from her efforts.
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•
Child gets older and needs change: there is an increasing need for self management
skills, but mother has lost faith in centre-based services and so gives up seeking medical
rehabilitation. There is no help in skills training or educational support available in their
own community.
• Neighbours suggest that she put her child in a hostel but mother does not want this; she
wants to do the best for her child at home, by helping her to become more independent.
She wants her child and the whole family to have a secure future together.
Most of the families of persons with multiple difficulties had undergone some of these experiences
as their child got older. Despite pursuit of medical rehabilitation, most real needs remained
unaddressed. Some had stopped service seeking at a stage when their child was still young
enough to make the delays in development of self management skills of little concern. They were
looked after as if babies and parents reported that they had managed their child’s needs relatively
easily. Difficulties developed when the person was still dependent on their mother when fully
grown.
answer: persons with severe and multiple impairments’ experiences of medical
interventions are similar in type, but more extreme than other persons with disabilities.
Needs for appropriate information and functional improvement are not met, particularly as
age increases. For most, all support comes from their own families.
Question 2.4.5: What are the barriers to medical rehabilitation services?
The study found that not only do medical rehabilitation services meet few of the real needs of
persons with disabilities, services are also characterised by barriers to their use, particularly for
urban poor people. The most common barriers relate to the fact that all of the services described
were organised on a centre-based model, thus are inevitably a considerable distance away from
most low income communities. The barriers to medical services are described in detail below.
This is not to over play the importance of medical rehabilitation, but to indicate the range of
barriers associated with all centre based services.
i) Structural barriers, and ii) associated economic barriers:
® time and the indirect costs of frequent service use: People with moving difficulties were
advised to attend hospitals regularly for physical management exercises. To many parents,
frequent visits were impossible. One-off service use for curative purposes was regarded as
significantly different from regular service attendance. Hospital service hours are during the
working day; parents had to work or do household work during this time. Taking regular time off
was not possible; the self employed could not afford to miss work, and few employers of poor
people allow such regular time off. Interrupting household work had effects on the rest of the
family. In all three cities, mothers described having to leave home early in the morning to attend
hospital services, particularly to allow for delays in public transport (late buses, and not being able
to board crowded buses with their child with disability). This meant that they did not cook for their
other children who, without food, would not go to school. The cost and practical difficulties
associated with transport were also significant barriers:
“Then I took her to hospital where they gave her powdered milk and showed exercises;
she continued attending there until she was 5 or 6 years old. We went to a Spastics
Society 2 or 3 times, but we stopped as the distance was too great, and the transport was
difficult. It was too expensive, and my daughter had grown heavy by then”.
mother of girl, 13, with severe moving difficulties
For many poor people, their first service use was also their last, irrespective of service providers’
advice to attend regularly.
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Time was also a barrier to the effectiveness of the few services which passed on skills for physical
management in the home. Shortage of time combined with a lack of understanding of why the
exercises were to be performed, and a dissatisfaction, or boredom, with exercises which did not
lead to any obvious improvement. Time, particularly related to serial interventions, was also a
barrier to compliance with advice for surgical procedures. Some people with moving difficulties
described having undergone serial operations. Surgery, whether beneficial or not, can be a time
consuming and traumatic procedure.
® direct costs of service use: In each of the three cities, a number of persons with disabilities
had consulted a private doctor about their difficulties, which indicates that direct expenses are
incurred in service seeking. Surgical intervention was also costly to the families of children with
disabilities. Even if the operation in a public hospital is free, the costs of admission and lying in
constitute a considerable burden to families. Where public services are not available, use of
private medical facilities exacerbate costs. Anticipated costs of interventions are a barrier to
service use for low income households. When surgery cannot be avoided, these costs indicate a
clear link between disability and increasing poverty:
“The doctor again asked to bring him to PG hospital for plaster once again. We went to a
private hospital instead, we couldn’t bear to do it to him again, but the doctor asked for
Rs. 10,000 for the operation which we can’t afford, so we dropped the idea. He crawls
around in the house”.
grandmother of boy, 11, with moving difficulty. Calcutta 193
“In 1993 I fell down from a tree. The next day I was brought to the city by train and taken
to the Marwari Hospital - there was no bed there so we went to a private hospital where
they wanted Rs. 2,200 for admission. We didn’t have the required amount and so we
went to Medical College where there was house staff strike. Then they took me to a
nursing home and they admitted me for 1 day after which time my father borrowed the
necessary money and took me back to the private hospital where they operated on my
spine. There I was admitted for 90 days, the cost of which was about Rs.28,000. A
harrington rod was fitted in the spine and the doctor told me to come and get it removed
after about VZ year. This would entail me getting admitted again for 1 month and would
cost about Rs. 15,000. We could not afford this amount and so could not get readmitted
for the removal of the rod, so it is still there in my back. I now have lost the use of both
legs and have no rectum and bladder control and also no strength in the hip”.
man, 37, moving difficulty as result of spinal injury. 164
The direct costs of medical services were also a barrier to investigations and control of epilepsy.
Question 2.4.6: is the use of medical rehabilitation services sustained?
answer: Few of the persons with disabilities had reached the end point of logical, time
limited medical rehabilitation. Rather, they had abandoned medical rehabilitation inputs as
the services did not address their changing needs, and because the barriers to service use
were too great.
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2.5
NEED FOR INCLUSION IN URBAN COMMUNITY DEVELOPMENT
The need for work, and education were expressed as needs in relation to participation in
community life. This was the issue behind other needs; inclusion and access to all urban
development, and more acceptance and respect in the community at large.
2.5.* Inclusion of persons with disabilities in municipal services
The study did not specifically examine the use of municipal services in the community studies.
The study did quantify the participation of persons with disabilities in schools in the cities (section
*). Mainstream and special schools were distinguished but the various types of mainstream
school were not. Therefore, data for mainstream education can be assumed to include Municipal,
Government, and some private schools. Experiences of other municipal services, such as public
health infrastructure, arose in qualitative data such as in-depth interviews and FGDs (see section
*
One of the organisations included in the evaluation of a range of eight existing services for
persons with disabilities was an attempt to integrate persons with disabilities into general
metropolitan/municipal services (organisation * in Table 1, page *). This organisation started
specific activities for the inclusion of persons with disabilities in one health administration unit
(HAU) of a Metropolitan/Municipal structure. This involved 72 people in a population of 35,000
(approximately 0.02%) so did not include all persons with disabilities, and was not a random
sample of all persons with disabilities, and included a wide range of difficulty and age groups. The
persons with disabilities were identified by community health workers amongst their beneficiary
population. The 72 persons with disabilities identified represent about one tenth of the number
that there might be expected to be in this population. This suggests that municipal health workers
were limited in their ability to identify persons with disabilities.
As in the community study, the main specific needs expressed by persons with disabilities and
their families were for income and education. Most had already sought services from medical
institutions, mostly government hospitals but also local rehabilitation NGOs. Some expressed
further medical needs.
In education there had been limited informal inclusion in corporation schools, mainly forthose with
moving difficulties, but there was no support for specific needs of children with other difficulties. A
few children had dropped out of school or been requested to leave because of their lack of
progress. One 15 year old with partial seeing difficulties had been excluded from a corporation
school. He was placed in a local non-formal school run by a local club, but this stopped when this
non-formal school closed. One young woman also expressed a need for education, and as a
consequence of the support of the fieldworkers in liaising with her family and teaching staff, she
was included in a corporation non-formal school. However, she had difficulty maintaining regular
attendance because of lack of backup and ill-health.
There was an expressed need for vocational training for young unemployed adults with
disabilities. A ‘camp’ for persons with disabilities to meet local community development staff was
arranged, and five persons with disabilities were identified for inclusion in existing mainstream
vocational training. Of the five who were selected, three were irregular or dropped out of training.
Two dropped out because of a lack of adequate back up services such as transport to the
training, and one because she had found job as a household maid. Of the two that completed
training (in television repair), one stated that in order to start to earn money he would need to get
a higher level of training and also access to capital with which to start a business. One young
woman had already completed 3 different vocational training courses but was yet to find work.
This is a common problem in all vocational training and not specific to persons with disabilities.
Finally,most of the 72 had already consulted medical services, mainly in government hospitals,
and a few NGO medical rehabilitation services. The municipal/metropolitan structure referred
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them to further medical rehabilitation services. Without this specific support from the Municipal
structure (such as making of group appointments for assessment and provision of transport for
such visits) persons with disabilities reported that they had experienced the same difficulties as
reported in the three community studies.
Question 2.5.1: is access to urban infrastructure difficult for persons with disabilities?
As well as barriers to work and education, persons with disabilities described their exclusion from
other things such as sanitation, water supply, public buildings, and public transport. They rarely
voiced the perception that these things should be changed or planned to make them more
accessible. This could indicate that such access is less prioritised than other needs. However, it
may indicate that poor people are not empowered to voice opinions about the form which urban
infrastructure takes. Thus, persons with disabilities are excluded from services as their specific
needs are not addressed.__________________________________________________________
answer: access to urban infrastructure is difficult for persons with disabilities, but this was
less expressed as a priority need than income and education.
Question 2.5.2: what are the barriers to access?
Persons with disabilities described barriers to their use of various facilities. For example, pumps
are too far or high, roads too rough with nowhere to cross, and public buildings have steps. Some
of these barriers are experienced by other urban residents who do not have impairments. The
example of access to toilets is salient to illustrate the marginalisation of the needs of persons with
disabilities in urban infrastructure development.
The public health function of sanitation services demands safe toilets for all. If persons with
disabilities are excluded from safe sanitation they may contribute to the transmission of disease in
the household and community. Section 2.4.4 described difficulties in safe toiletting for those
without toiletting skills who depend on family members to assist them in toiletting and washing
afterwards. Other persons with disabilities described difficulties in using the sanitation facilities
available in their community. Another link between sanitation and impairment was defecation in
dangerous surroundings. Several persons with disabilities interviewed had been involved in
accidents while defecating; one had been hit by a train; another had fallen into a drain into which
she was defecating. Both had resulted in permanent impairment.
® difficult physical access to toilet: Defecation in the open is common for small children, some
of whom are told not to use community toilets in case they fall in. It is not socially acceptable or
safe for adults in densely populated areas. Some persons with moving difficulties described being
unable to use common toilet facilities, both those built by householders and by municipal
authorities. Toilets were inadequate for the community at large and even less suited for use by
persons with disabilities:
“There is one toilet shared by the five families nearby, but to reach it you have to go
through an area where everyone dumps their garbage and children in the neighbourhood
defecate all over that area, and she can only shuffle on her bottom through it...therefore
she goes to toilet on the veranda where she sits and her sister wipes the floor with a piece
of paper and throws it in the dumping area near the pond”.
mother of woman, 20, with moving difficulty, 111
“She roams about the area on four limbs and sometimes uses her chappals on her hands.
This toilet is shared by 25 families. She can’t use it as it is very slippery in there and she
may fall. Moreover it is difficult for her to lift herself onto the toilet seat, so she prefers to
go on the canal side. In the rainy season, she goes there all alone since I may fall sick if I
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am helping her and get drenched in the rains, and if I get sick all the younger children
may fall sick”.
mother of girl, 7, with moving difficulties. 118
® no water source close to toilet: Those who could not move to the toilet and carry water with
them were dependent on someone to help them carry the water. When this was not possible they
often chose to go to toilet close to a water source instead, such as on the bank of a nullah.
answer: barriers include toilets which cannot be accessed by those with difficulty moving,
and a lack of water near toilets.
2.6
NEED FOR ACCEPTANCE IN THE COMMUNITY
Question 2.6.1: what are persons with disabilities’ experiences of family and community
______________ attitudes?______
Persons with disabilities who were participating in mainstream life, such as attending school or
working were reportedly treated as any other family and community member. It appeared that
active participation in the mainstream of life had the greatest impact in creating positive
community attitudes.
Some of those with greater difficulties, and less immersed in the life of the community, were more
likely to be treated negatively by their family and the community at large.
“Our mother says ‘you just sit and eat and don’t help in the family income’. He doesn’t
want to sell fruits with his father and brothers or sort plastic with me. He hates himself.
He roams around... he is totally useless... our parents thought that being the eldest
brother he will take responsibility for the family. But instead he demands good food like
meat”.
sister of man, 16 with moving difficulty and indistinct speech. FGD2.2
However, such feelings about young men who do not do their share of work are not restricted to
persons with disabilities. Some extended families all treated their disabled family member with
love, respect, and shared responsibility for providing support when necessary. In other families,
care for a person with disability was the responsibility of one member, typically the mother. Some
families used names for the disabled person that were defined by their difficulty. The abuse
intended in such names varied, but persons with disabilities generally resented such names. This
did not always deter others:
Fieldworker'.
Boy, 15, with moving difficulty.
Boy’s sister.
Calcutta FGD2.2
We have heard your sister call you ‘khora’ [cripple]. How
do you feel about it?
I don’t like it but what can I do?
Children and even adults tease him and pull his trousers, and
spit on him. But as khora doesn’t have any strength in his
leg he falls down after a few steps so can’t chase them.
An important bridge between family and community life is attendance at social functions such as
marriage parties. Most persons with moving difficulties resulting from polio reported that they
attend all functions with their families. A few young adults chose not to go as they felt self
conscious. Many older persons with severe and multiple impairments were excluded from
functions by their families. For some this was because they would have to be carried; others were
excluded because they did not have toilet skills, but those with multiple difficulties, and people with
strange behaviour were widely excluded because “people did not want to look at them”.
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As with family attitudes, respondents described a continuum of experiences in the community,
from descriptions of special efforts made by neighbours to help them; persons with disabilities
who are treated like any other citizen; to persons with disabilities exposed to extreme verbal and
physical abuse. This mixture is illustrated by the following description:
“The neighbours tease me, I become very angry. Sometimes in anger I try to hit the
person who teases me but I can’t do it because I don’t have control over my movements.
I have a few very good and close friends who carry me to the cinema. I don’t have a good
relation with my siblings. The members of the family and the neighbours call me ‘Khora’".
boy, 15 with moving difficulty. 152
Negative attitudes vary. Some persons with disabilities were physically attacked:
“Due to his odd behaviour he also gets beaten by people and so we have to try and
protect him., to prevent him loitering about we have to tie him up with rope”.
father of man, 23, with learning difficulty, epilepsy and strange behaviour. 150
More were subject to name calling or questioned insensitively about their impairment. A common
theme reported by children with disabilities and their families was that neighbours were generally
supportive and positive, but would resort to abuse about the person’s difficulty in times of conflict
Strangers were generally more abusive.
A number of persons with disabilities described the great support that they had got from their
community. This was of two types. Friends might be supportive on an ongoing basis, like family
carers. This was more common for people who had become disabled by accidents and so had
friends from before this occurred:
“At one time I found a lady whom I intended to marry but due to my financial instability I
couldn’t do so. Seeing this, my friends came forward and helped me to open a shop near
my house. I sell soaps, hair oils, cosmetics, and cigarettes. I am quite popular in the
locality and have 100% co-operation from people here. Everybody loves me. After that I
got married to that lady and now we have a 21/4 year old son”.
man, 38, with moving difficulty, 021
Community organisations, such as youth clubs, and political parties, tended to act with one-off
efforts. Several people throughout the communities sampled had received aids and appliances
from local community clubs, and also Lions and Rotary clubs further afield. One young man was
given financial help to pay off loans taken for medical treatment by a local youth club which raised
contributions from local businesses.
answer: experiences of family and community life and attitudes vary. Many positive
examples and many negative experiences were discussed in each of the three cities.
Virtually all persons with disabilities interviewed received support from their families.
Question 2.6.2: do persons with disabilities get married?
Discussions of marriage virtually all referred to arranged marriage. Some persons with disabilities
were married; some families planned that they would get married; other were not expected to get
married. In Visakhapatnam and Bangalore, it was relatively common for young women with
disabilities to marry their maternal uncle. Indeed, in one FGD in Bangalore, 6 of 10 women
present had married their mother’s brother.
answer: yes, some persons with disabilities do get married.
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Question 2.6.3: what barriers are there to persons with disabilities getting married?
The key determinants of whether marriage would be possible for persons with disabilities appear
to be the following:
® the nature of an individual’s difficulties Those with less severe moving difficulties were
regarded as the most suitable for marriage, and those with learning difficulties and multiple
difficulties the least. Many parents of persons with multiple difficulties had never considered that
their child would marry. Other parents were trying to find a match but found that their daughters’
impairment was a barrier to finding a willing man.
® a man’s inability to earn money and support himself and his wife
® a woman’s inability to earn money, or to do household work.
‘Who will marry a lame girl like me? I won’t be able to do any of the work”’.
woman, 20, with moving difficulty, 111
Marriage was also perceived as a transfer of domestic labour by the parents of men with
disabilities. The possibility of a person with disability marrying another person with disability had
been discussed in some households. Earning capability, household work, caring, and the
marriage of other siblings ‘in turn’ were key issues.
answer: barriers relate to an individual’s difficulty, and then to abilities to earn money, and
for women, household work.
Question 2.6.4: what is marriage like for persons with disabilities?
A small number of the respondents were, or had been, married. All had married non-disabled
people. Arranged marriages were the norm. From the limited number of examples, it seemed
that the success of a marriage depended on personality, and hard work in earning money and
keeping the household.
answer: as for any community, persons with disabilities’ experiences of marriage include
both good and bad.
*2.6.5
What is ‘community’?
This study has reported the limitations of available services in terms of meeting the expressed
needs of persons with disabilities and their families in low income communities. It has also
described negative attitudes to persons with disabilities within their own households and own
communities. Despite this, it has stated that, for many persons with disabilities, virtually the only
support for their needs comes from their own ‘community’. This begs the question: what is
community?
In section * above, it was described that ‘community’ in the UCBR study means a geographical
area in which a person with disability lives, as this was the unit of sampling used for the
community studies.
Generalisation is difficult, but beyond this, the ‘community’ support for the needs of persons with
disabilities apparent in the community studies means first and foremost family members,
particularly mothers and female relatives who provide care and support for persons with
disabilities. This ranges from emotional support for those with less severe difficulties, such as
moving difficulties following polio; through to all-embracing physical support for those with severe
and multiple impairments - everything from the purchase of food, to feeding.
This is followed by the extended family and household; and in some instances by neighbours in
the immediate area with whom persons with disabilities have the most history of social contact
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In the wider community, support means opportunities for education for some persons with
disabilities in local schools; and opportunities for skill learning and income generation in local
community workshops and petty business.
The extent of such ‘community’ support varies from individual to individual. Support for persons
with disabilities and their families appeared to most available when they were children, or when
impairments were acquired later in life and thus individuals already had their own social networks
to draw support from. Community attitudes, and related support, were most positive for persons
with disabilities who were already participating most in the mainstream of community life, and for
families who .
Support, understanding and the availability of community resources were least for adults with
difficulties such as unacceptable behaviour, and a lack of daily living skills which distanced them
from the mainstream of and as a result fuelled negative attitudes and limited support.
2.7
AGE AND DISABILITY
There are age dependent changes in needs and service use. Of all service provision, medical
rehabilitation services are the most frequently used, but this typically took place during a child’s
first few years, when parents sought curative services and information. Some ended their service
use at this time. Others persisted with medical rehabilitation, such as physical management and
getting aids and appliances. With age, barriers relating to physical access to centre-based
services also increased for those with moving difficulties.
Generally with age, needs evolved away from the medical and towards education and work. There
is less provision of rehabilitation services to support these needs. Thus, persons with disabilities
who could not use mainstream schools or secure mainstream work have no services support after
their early contact with medical services.
The key informant process used to locate persons with disabilities virtually ignored those who
were disabled and old. This short-fall makes conclusive statements about this group impossible.
answer: increasing age is accompanied by changing needs, and rapidly diminishing
service provision.
2.8 GENDER AND DISABILITY
Possible differences in needs and experiences between female and male persons with disabilities
were discussed in in-depth interviews and FGDs both in the community study and in the eight
service evaluations, and analysed in the quantitative data. A number of patterns emerge, but with
regard to qualitative data, a generalisable understanding of the relationship between gender and
disability was unclear. For example, some parents stated that it was ‘not worth’ educating girls
with disability, while other parents stressed that for girls with disability, education was their “only
chance to gain independence”. The relationship between gender and marriage for persons with
disabilities are described in section *.* above.
Gender specific experiences of persons with disabilities largely reflect the gender specific
experiences of the population at large. In Calcutta and Visakhapatnam, the proportion of males
attending school is significantly higher than the proportion of females (Calcutta; 54% males, 39%
female; Chi2=4.088; df=1; p=0.04319. In Visakhapatnam 66% of males and 48% of females Chi2=
6.98781; df=1; p=0.0082). In Bangalore 66% of men and 58% of women had attended school but
this difference was not statistically significant This gender difference also occurs in the urban
population in general (the average figure for all children in the 5 to 14 age group in urban West
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Bengal, Karnataka and Andhra Pradesh combined can be estimated for 1987-88 as 74.8% and
69.6% for boys and girls respectively).
In Visakhapatnam and Calcutta women with disabilities were significantly less likely to be in paid
work (Calcutta 43% males; 9% females. Chi2=15.4623; df=1; p=0.00008: Visakhapatnam 56%
males; 27% females: Chi2=8.51 df=1 p=0.0035). Although some women were doing household
work, they are even more economically reliant on other people, and have less control over their
own lives. This difference is also reflected in training. Of those over 15 years old, 24% of men
and just 9% of women had done any sort of training for work. Again, this is significant (Chi2=3.92;
df=l; p=0.047). As training mostly occurs in the workplace, this is unsurprising, but in terms of
work skills for future employability, women with disabilities are significantly worse off.
There is no apparent difference in the relative use of medical rehabilitation services. Male and
female respondents had used similar numbers and types of services.
Parents expressed a greater concern for the safety of disabled women and girls than men and
boys. The added risks of assault and abuse were raised particularly for those with learning
difficulties.
answer: females are less likely to attend school or do paid work than males. Risks in
community life are perceived as greater for women and girls.
2.9
POVERTY AND DISABILITY
The literature review (section 1.2) referred to evidence that prevalence of impairments is higher in
low socio-economic groups. The community study also described links between poverty and
disability.
Firstly, families suggested that poverty can be a cause of an impairment. Qualitative data from
the more marginal communities (such as squatted, canalside slums) indicated that provision of
basic public health infrastructure and health information was less available there than in
recognised slums. In such conditions, transmission of disease is known to be more intense.
Infectious disease is a known cause of impairments, leading to disability. Although no prevalence
figures are available for impairments, some respondents linked the lack of information about polio
vaccination to the fact that their child had got polio. Other persons with disabilities linked their
impairment with their inability to afford appropriate intervention.
Secondly, many barriers to rehabilitation services are poverty-specific. Whether barriers are a
direct fee to a private doctor, a bus fare to a hospital, the wage lost while using a service, or a
bribe to a service provider, cost is a bigger service barrier to poor people. Poor people stopped
using services. Incurring the costs of rehabilitation services is an extra cost that other households
in low income communities do not have. The limited data available suggests that persons with
disabilities are less likely to go to school and are less likely to do paid work than the urban
population in general. Carers of some persons with severe and multiple disabilities also reported
that they are unable to do paid work. Therefore it appears that urban households in which there is
a person with disability have additional costs to pay, and less opportunities to earn income than
other urban households.
answer: it is known that prevalence of impairments is greater in low income groups.
This study found that disability also contributes to poverty.
2.10
CONCLUSION OF THE COMMUNITY STUDIES
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The priority needs of persons with disabilities expressed in the three community studies were for
income, and education.
For the majority, and with increasing age, medical needs were less
prioritised.
Of the 294 persons with disabilities over the age of 15 interviewed in the community studies, 34%
were doing paid work. These work opportunities had virtually all been found in their own
community and had been accessed through local social contacts such as family, neighbours, and
friends. Similarly, the majority of skills training for persons with disabilities was informal and had
occurred in the workplace. Experience of vocational training was extremely limited, as was the
experience of government support such as pensions, employment opportunities and loans. Of the
237 adults with disabilities interviewed, 28 (10.5%) had obtained a pension. One had secured a
loan. One had a job through the government quota. Barriers to access include the poor attitudes
of government employees and their demands for bribes to sanction application Support for
income generation by family members of persons with disabilities is not available.
43% of the persons with disabilities interviewed had never been to school. The percentage of all
children in the 5 to 14 age group not going to school in urban West Bengal, Karnataka and Andhra
Pradesh combined can be crudely estimated for 1987-88 as 28%. Persons with disabilities who
had been to school had mainly attended mainstream schools. Barriers to mainstream schools
included the negative attitudes of teachers, and in all three cities some children with learning
difficulties and communication difficulties were in school without any appropriate support.
However, across the three cities, the number of persons with disabilities who had been to
mainstream schools out-numbered that for special schools by nearly five to one. The use of
special schools was limited, and they were located far from most people’s homes, so transport
and other costs particularly excluded poor people.
Despite the prioritised need for income and education, virtually the only rehabilitation services
experienced by persons with disabilities from low income communities are medical. 88% of those
interviewed had used a medical service in relation to their difficulty, mostly government hospitals.
Less than 5% had used NGO medical rehabilitation services. The study found that medical
rehabilitation services did not meet even the medical rehabilitation needs of most persons with
disabilities. For example, interventions for those with moving difficulties had a questionable
impact on mobility. Many aids supplied were not used, and people were managing their own
mobility without them. This prompts concern about the appropriateness of interventions and the
cost effectiveness of services provided. A need for monitoring and evaluation of effectiveness is
indicated.
Services for those with severe and multiple impairments were arranged for diagnosis, mobility,
and prevention of further impairments. They did not address the day-to-day needs of persons
with disabilities, particularly as they change across the life span. Services did not support learning
of functional skills, which would help persons with disabilities gain more control over their lives,
and allow family members to do other things. The only support available for most of those with
severe and multiple impairments was from their own families.
To compound dissatisfaction with medical rehabilitation services, their means of delivery acted as
a barrier to the urban poor. All of the medical rehabilitation services used were based in single
centre institutions. Like special schools, this meant that they are a considerable distance from
most communities. Distance contributed barriers relating to cost, time, and practical difficulties of
transport (experienced by all groups of persons with disabilities), particularly when frequent
service use was advised. Other significant barriers to centre based services were the cost of
missed opportunities for paid work by persons with disabilities and family members. Beyond
barriers related to the centre-based approach, additional barriers included the purchase costs of
aids, payment for investigation, and the cost of hospital admittance. These costs either prevented
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service use or exacerbated the poverty of persons with disabilities in low income communities.
Finally, descriptions of the treatment of persons with disabilities and families by medical
rehabilitation institutions indicated that service delivery was unsympathetic and lacking in respect
for poor people.
In conclusion, the real needs of persons with disabilities were largely unmet by rehabilitation
services. The greatest support for their needs was found within their own families and in their
home communities. Much of this support operated regardless of rehabilitation service provision
which, in contrast, did not address real needs, was not located in low income urban communities,
and was not organised to be accessible to poor people.
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SECTION 3: SUMMARY OF EVALUATIONS OF SERVICE APPROACHES
The eight project partners offer a variety of approaches. Most combine several approaches within
one service organisation. In the evaluation, the varied approaches within any one organisation
were examined separately.
Organ
isation^
1.
Approaches to service provision
a. Centre based: out patients department (OPD); special school; vocational
training
b. Outreach
2.
a. Centre based: OPD; special school; vocational training
b. Outreach
3.
a. Centre based: special school; vocational training
b. Community based approach
4.
Home based approach, with medical referral
5.
Home based approach, with embryonic integrated approach, with medical
referral
6.
Orientation for integrated education, teacher training
Special education teacher training, adult day centre, and insurance
8.
Welfare approach
Two of the partners (3 and 8 above) are organisations started by persons with disabilities. Two (1
and 7) originated as parents’ organisations. Two (1 and 2) employ approaches based on a
professional model of rehabilitation workers. Two of them were government and six were non
government organisations. All except one (6) were included as partners in the UCBR Project
because they claimed to be involved with the urban poor. In this review of the eight evaluations,
each approach will be discussed against a frame of key issues.
These are coverage,
effectiveness, staff issues, participation, advocacy and cost.
3.1
COVERAGE
3.1.1
Coverage of the urban poor
All of the partner organisations describe themselves as being open to all persons with disabilities
in the appropriate age or difficulty group, regardless of socio-economic status.
The socio
economic coverage of each organisation was examined by comparing the distribution of socio
economic status of a random sample of service users with the distribution of socio-economic
status of persons with disabilities in the related community study. Proxy indicators were used,
Firstly, housing materials: a concrete roof indicates a pukka house, and mud walls a kutcha
house. Secondly, the type of work done by the head of the household.
3.1.1.1 Centre based approaches: The centre based services evaluated were set up because
there were no services at all for persons with disabilities in those cities. One was started by
persons with disabilities themselves, the other by parents of children with disabilities, particularly
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those with severe and multiple impairments.
These services have been pioneering in
rehabilitation service development and been duplicated in other cities.
The coverage of two centre based services was heavily oriented towards upper socio-economic
groups. For example, in one, 77% of the service users live in a pukka house, compared with less
than 5% of the community study sample for the same city. The difference was also apparent
using employment as an indicator. For the same organisation, 46% of service users came from
households headed by a manual worker. The proportion in the relevant community study was
88%.
Similar socio-economic coverage was experienced by another centre based service
approach in a different city. 68% of service users live in pukka houses, compared with 15% of
persons with disabilities in the community study. The difference is also striking if relative
proportions of kutcha housing are compared. 4% of users live in kutcha households, compared
with 38% of the community study. It is clear that centre based services serve a population with a
distribution skewed towards upper income groups.
The community studies found that all centre-based services have barriers to their use which are
greatest for poor people: particularly distance, access, time taken to use a distant service, cost of
transport, cost of work time lost, and practical difficulties with transport. The extent of this barrier
can be illustrated by the calculating the mean transport cost for OPD users per year. In one
centre, the mean transport cost paid by OPD users was Rs.26.8 per visit. The mean number of
visits per month was 1.7, and, per year, 20.4. The crude mean cost of transport per year can be
calculated for each service user interviewed.
The mean is Rs.579. Such barriers tend to
increase as the age of persons with disabilities increases. The barriers particularly prevent poor
people using centre based services, mean that poor people use services less frequently, and lead
to poor people dropping out of service use.
The main mechanism by which centre based services address poverty-related barriers is to give
progressive subsidies for service costs according to the socio-economic status of service users.
Thus, many of those from low income households qualify for free services. However, poor people
described the indirect costs barriers of centre based approaches as being more important than
service fees. In short, waiving user fees does not do enough to enable poor people to use centre
based services.
3.1.1.2 Centres with multiple approaches: Two of the organisations offer different service
approaches, such as special school and OPD, in the same centre. These are organised on
different frequencies of attendance: special school attendance is daily for six hours, whilst OPD
attendance is a mean of 1.7 visits per month. In such a scenario, the daily school services include
significantly fewer poor people than OPD services.
For example, in one centre based
organisation, the proportions of users living in pukka housing are 90% and 69% for school and
OPD respectively (Chi2= 8.55862, df=2, p=0.01). More poor people use centre based services
which are arranged on less frequent attendance than those requiring daily attendance. This
means that poor people get less service contact time. In one centre based organisation, over all
service users, people coming from pukka households have a mean service contact of over 35
hours per month. In the same organisation, those coming from non-pukka households have an
average contact time of under 7 hours per month. This difference between means is significant
(f=8.6; df=1.0; p=0.01).
A condition of securing a place in special schools is a child’s ability to attend every day. The
barriers to centre based services mean that many poor people are effectively excluded from daily
services. Thus, a situation emerges where there is one service which includes higher income
groups and another includes lower income groups. Regardless of the comparative quality of
inputs, the contact time for upper socio-economic groups is significantly greater. The inequity of
this situation is further indicated when one considers;
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• The annual cost per capita of special school service provision is more than 10 times the
annual cost of OPD service provision (see section 3.6 below).
• The tendency for organisations to support special school users with their own bus
service but offer no assistance to overcoming transport barriers by users of other
services.
• The tendency to support the applications for government welfare services by special
school users but not users of services such as OPD.
• The greater emotional support for children with disabilities and their families in special
schools than OPD.
• The greater opportunities for participation by the families of children in special schools
than other service users, in which to meet other service users and express needs.
3.1.1.3 Model centre based services, replication and coverage: The three centre based
services describe themselves as "models” for replication elsewhere in India. They contend that
such replication will increase the number of persons with disabilities included in rehabilitation
services in India as a whole. They had developed training capacities through which to train
people who want to start similar services elsewhere. However, those that come for training are
mostly from higher socio-economic groups, and serve higher socio-economic groups. The
evaluation found that it is extremely rare for people from low income communities to
spontaneously come for training in order to start a service for the poor. Therefore, replication of
such “models” will not increase service coverage for the urban poor.
Other approaches favoured higher socio-economic groups because they had specifically evolved
to serve the interests of these groups. Both of the partners which had developed from parents’
groups were made up of middle class parents. They understandably focused on the needs of
persons with disabilities in their own income group and grew by attracting additional persons with
disabilities and their families from this group. An example is the development of an insurance
policy for persons with disabilities which provides for the cost of care needs when their family
members have died. This idea has grown throughout India. However, the scheme is not
advertised through media used by the urban poor, premium levels are not suitable for poor people
and, indeed, neither is life insurance in general. Persons with disabilities and their parents of high
socio-economic status do not automatically represent all persons with disabilities and their
families.
3.1.1.4 Service approaches away from the centre: Barriers related to distance are lessened if
services are located in the poorer communities and coverage of lower socio-economic groups
increase. However, care must still be taken that service structures do not exclude poor people.
The outreach approach takes professional services to local centres. This should transfer the cost
barrier of transport to the service provider. However, this assumes that outreach centres are
placed within or close to low income communities. In total, 10 outreach centres in two cities were
evaluated. Only one was found to be based within a low income community, and in community
space. The other outreach centres were either in higher income areas, or associated with
institutions and included few users from low income households. Indeed, these outreach centres
had become mini centre-based institutions in their own right, with all of the associated barriers,
particularly for poor people.
High expected frequency of service attendance was also a barrier to poor peoples’ use of
outreach centres. Parents were unable to stay with their child as initially demanded by the centre
staff. Instead, parents tended to use the centre as day care as this allowed them to drop off their
child and then do paid work. This proved to be one of the greatest strengths of the outreach
approach and was a positive factor in the general socio-economic development of the
households. However, others were unable to bring their child every day and dropped out.
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Community-based and home-based approaches include a greater proportion of poor people. The
relative socio-economic coverage of a centre and a community based approach is indicated in the
following table:
Table 15: comparative coverage of socio-economic groups in a selected city
Proportion living in kutcha
Proportion living in pukka
housing
housing
Sample
_____ (mud walls)______
(concrete walls and roof)
38%
15%
1. Community study________
4%
68%
2. Centre based approach
17%
23%
3. Community based approach
However, note that the proportion of the community based approach living in kutcha housing is
less than half that found in the in the community studies. Obviously, the socio-economic coverage
of community based approaches depends on the type of communities chosen for activities.
Although this particular organisation served urban slums, these were by no means the poorest
slums in the city. This was also the case for the municipally organised home based service
approaches. For example, in municipal service, 27% of service users lived in mud walled kutcha
housing, versus 41% of persons with disabilities in the community study. Again, the slums
selected for municipal service delivery are older and more established than some of the slums
randomly sampled in the community study. Municipal services work in recognised communities,
and largely ignore persons with disabilities in the most marginal and impoverished areas, which
were included in the community study samples.
The importance of distance and transport related barriers to poor people’s use of centre based
approaches was discussed above.
A merit of both home-based and community-based
approaches is that such barriers are avoided, either because service providers are local people,
or because the transport costs are borne by the service. However, in both of the municipal home
based approaches evaluated, the city government structures had difficulties in paying workers’
transport costs, despite being included in service budgets. This may seem to be a small obstacle,
but combined with low payment it was a major barrier recognised by community workers to their
own ability to maximise service quality and coverage.
Summary: do service approaches cover the urban poor?
Service approaches which are located in or close to low income communities are
the best at covering persons with disabilities amongst the urban poor.
• Centre based services produce the same barriers as the government hospitals
described in the community study. These barriers exclude poor people and are a
greater deterrent to service use than direct service costs.
• When centre-based approaches offer a range of services to persons with
disabilities, service use tends to divide on socio-economic status rather than on
service need. This further propagates inequity by giving high cost, high intensity
service to more affluent persons with disabilities, and lower cost, low intensity
services to the urban poor.
•
3.1.2 Coverage of different difficulty groups
Most of the partner organisations had started with single-impairment orientations but are gradually
expanding to include other difficulty groups. The barriers associated with centre based services
made their use particularly difficult for those with mobility problems. These included people with
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moving difficulties, seeing difficulties, multiple and learning difficulties, who could not use public
transport alone. In general, mobility related barriers increase as persons with disabilities got older
and physically bigger.
Outreach centres which were not in the community had similar barriers. In the community, those
with severe and multiple impairments might be excluded from outreach centres if they did not
have toilet skills, or unacceptable behaviour.
In home based services, most workers were best able to meet the needs of those with less severe
impairments, while doing little to address the needs of those with severe and multiple
impairments. Community based services were similarly less good at including the needs of those
with more severe impairments. The community-based approach evaluated was developed for
children with moving difficulties. It is now trying to expand to serve all persons with disabilities but
the intensity of need differs, and changes are required in the kind of service offered, training
inputs for workers, and technical support.
3.1.3 Coverage of different age groups
The coverage of all of the organisations evaluated is oriented to lower age groups. For most, the
extent of coverage of adults reflects the length of each organisation’s life span. Most started
working with young children, and some twenty years later these children, still service users, are
now adults. One of the centre based services reported that it tries to ‘wean’ people away from the
service and get the family to take charge. This was particularly the case for people with severe
and multiple impairments and was related to increasing mobility difficulties and transport
problems, but in some cases the result was an end to social, and other stimulation outside the
household.
Only the embryonic integrated approach aims to include the needs of people who are both old and
disabled.
3.1.4 Coverage and gender
There were more males than females in all community study samples and in the samples of users
of all organisations evaluated. This difference is found in the Indian urban population in general
and in surveys of persons with disabilities.
In counselling activities, and where service providers perform physical management exercises on
persons with disabilities, some concerns were raised about the interaction of male workers and
women with disabilities. In most of the organisations, this was avoided as there were sufficient
female workers. When this is not the case, appropriate recruitment and worker management can
avoid problems. For physical management, creative approaches which maximise the active
participation of persons with disabilities and their families should limit such culturally sensitive
contact and improve the effectiveness of intervention.
Some of the vocational training available had a very high ratio of males to females. This was
because of the trades offered in relation to work opportunities of men and women, and because in
one case application was explicitly for young men. All of the community studies found that men
and women need paid work, so vocational training should be arranged to meet the needs of both.
3.2
EFFECTIVENESS OF APPROACHES IN MEETING EXPRESSED NEEDS
The specific needs of persons with disabilities and their families in low income urban communities
expressed in the three community studies, and in order of priority, are for:
1. Work and income
2. Education
3. Appropriate medical rehabilitation
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4.
5.
Inclusion in urban development
Acceptance in the community
3.2.1
Meeting the need for work and income
One segregated centre-based vocational training evaluated was located in an urban area but had
a mainly rural user group. Urban youths with disabilities described that the trades offered were
old fashioned and not oriented to the skills needed for urban employment. They said that better
training was available in mainstream vocational government training centres, and even in small
businesses, which would offer skills more appropriate to local urban market opportunities, and
would be of better quality. One young man commented that “education and training are
important, but there are children who get jobs at the age of 12 and learn to do soldering straight
away - and some of us go to school and then Industrial Training Institute and still don’t do it as
well!”. This centre was also organised to support mainly male trainees by firstly offering trades
favoured by men and secondly advertising for applicants from ‘boys’. It also largely limited itself to
those with polio-related moving difficulties, although people with speech and hearing difficulties
and mild learning difficulties were beginning to be accommodated, though in informal trades which
did not receive a government-recognised certificate. It is reported that job placement following
this training is successful, although records were insufficient to follow this up.
The other two centre based vocational training services included more people with other moving
difficulties and learning difficulties, although one of them screened trainees in favour of those with
least difficulties.
In one centre there was a feeling amongst some parents of trainees that the vocational training
was actually a form of therapy or an adult day centre. The ex-trainees interviewed had had mixed
success in earning money in the mainstream. By the organisation’s own estimate, only 3 of 49
current trainees came from ‘lower class’ households.
The other centre is more actively oriented towards paid work. Some trainees are placed in local
businesses, although the major single employer is the organisation itself. Some of the placements
followed up were not financially viable for the individual placed. For those with severe and
multiple impairments who had fewer opportunities for mainstream employment, training outcomes
were oriented towards establishing income generation using family resources. Some of these
units were actually supported almost entirely by the work of other family members, but persons
with disabilities were to some degree present during working hours. The income benefited the
whole family, and such a need for household-based production was identified in the community
study. However, from the partners evaluated, success appeared to depend on considerable
existing financial resources of the family. These included considerable start up capital, and space
in which to set up work, which virtually excluded the urban poor.
There was one example of a community-based approach to vocational training. This organisation
included persons with disabilities and their family members, mainly mothers, in its own community
based vocational training centres, and in centres run by other organisations. This was part of
general community development. After training, people reported that they were able to take up
better work in the local garment manufacturing industry. In fact, the community workers
complained that once trained these slum dwellers earned more than they did. In general, any
vocational training was only as good as the quality of the skills offered and the availability of local
market opportunities in which to employ them.
The community study indicated that most opportunities for paid work for persons with disabilities
arise in their own communities, although these are mainly those with moving difficulties. Such
opportunities for paid work develop from family resources and local social contacts such as
friends and neighbours. Therefore, removing persons with disabilities from the community
environment, whether for school or vocational training, would appear to reduce such mainstream
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job finding opportunities. If placement follows vocational training, there is also a need to orient
other workers to a person with disability. Discussion with persons with disabilities and their
families also indicated that segregated training reinforces expectations for special services such
as government reservations and pensions, which are almost completely unavailable.
3.2.2.1 Access to welfare: The centre based schools appeared adept at securing government
scholarships, and disability certificates for children with disabilities. These were often applied for
en masse and a greater proportion of these school children had benefits than the proportion of
children in the community study. However, such facilitation of access to benefits was not
apparent for children using occasional services such as OPDs. Given the tendency for those
using daily services to be from more affluent households than those using less frequent services,
this differential support is inequitable.
One of the partner organisations, managed by a person with disability, had the explicit aim of
helping all groups of disabled adults to gain access to state and national government services for
disabled people. However, reports by persons with disabilities who had contact with the
organisation raised doubts about the success of this process.
They reported that the
organisation’s director demanded payment for this service, did not always secure benefits for
them, and even that he had applied for plots of land under the state government’s disability quota,
and housing loans on their behalf, and sold the plots to other people and kept their loans.
Persons with disabilities are not necessarily more sensitive to the needs of other persons with
disabilities.
3.2.2 Meeting the need for education
The community study described the importance of education in mainstream schools for those
children with disabilities who do go to school, and the far greater numbers of children with
disabilities in mainstream schools than in special schools. However, many children from low
income communities do not go to school at all, and this is not limited to children with disabilities.
Home based, community based, and centre based approaches support some children who are in
mainstream school. Given the different difficulty groups served by each, it is difficult to make
comparisons of the relative success in supporting mainstream placement. For example the
community based approach has placed mainly those with moving difficulties resulting from polio,
so it is not reasonable to compare this with centre based services’ more modest levels of
placement of those with cerebral palsy. In general, mainstream placement was restricted to
children with moving difficulties.
Although the centre-based services have some users who do go to mainstream schools, this
support is fairly passive: children in such schools come to the rehabilitation service for additional
support, rather than the service actively putting children into the mainstream. The experience of
such children was that they had to miss school, or wait for holidays, in order to visit rehabilitation
workers. This was the case whether needs were for medical rehabilitation, emotional support, or
to address other problems at mainstream school. Centre based OPD staff were generally unable
to make visits to school or home on behalf of children with disabilities using the OPD.
In home based and community based approaches, mainstreaming is supported by generalist
municipal community workers, and an NGO’s community social workers.
Overall support for
children who can enter mainstream schools is best delivered by such community based workers
working closely with local schools’ teachers. This enables sustained and flexible interaction in
home and school visits, which is needed, particularly when placement is new to a child or new to a
school. This is true for all types of education, from pre-school and informal education to primary,
secondary and further education.
The evaluation suggests that the best approach to
mainstreaming is by community workers supporting children with disabilities and orienting local
education structures to integrating persons with disabilities. The evaluation indicates an ideal
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where community workers and education workers should be part of the same integrated structure
which addresses the needs of all children, whether excluded because of disability or because of
poverty.
The success of the approach to mainstreaming children with seeing difficulties by providing
integration training for children and training teachers to support children with disabilities in
mainstream schools is uncertain. An absence of records meant that very few children who had
been through this process were traced, and none came from urban low income communities.
What is more, a proportion of the teachers trained went on to work in special schools.
3.2.2.1 Effectiveness of special schools: The evaluation aimed to evaluate the effectiveness
of the special school approach in meeting the needs of children with disabilities from low income
communities, and not to make a detailed educational assessment of the quality of special schools.
The community study found that the number of children with disabilities attending special schools
(56) was about five times smaller that the number attending mainstream schools (253). This
limited coverage was also apparent within the partner organisations, where the number of children
with disabilities attending special school services was a small part of total coverage. This was in
spite of the wider age group attending special schools (such as 5 years to 20 years) when
compared with related OPD services (1 year to 8 or 10). What is more, many of those attending
OPDs had no regular educational inputs other than a half hour session with a special educator
twice a month at the OPD.
Two of the three special schools include mainly those with severe and multiple impairments
However, each of the three include some children who could be in mainstream education with
appropriate support. Some parents of children voiced concern about the impact of segregation on
their children.
The three special schools included in the evaluation were already operating at maximum capacity
and were unable to increase their intake. In relation to coverage, two of them were described by
service providers as ‘model schools’ to be replicated by other organisations in other places in
order to include more children with disabilities in education. However, the cost of special schools
(see section 3.6) makes replication very difficult. There is insufficient money available in the
public sector, and the partners were all long established and adept at raising their own funds. The
likelihood of funds being available for replication is slim.
3.2.2.2 Learning for people with severe and multiple impairments: The community study
indicated that there is a significant need for more basic learning for people with multiple and
severe impairments which was unmet by government services. Centre based special schools and
OPD offer inputs for learning daily living skills. In the centre based approaches evaluated this
learning is supported by a professionally trained special educator and therapists. The most
intensive support available for learning daily living skills is at special schools, but there are
barriers to successful learning of skills. Firstly, special schools are not available to many persons
with multiple and severe impairments from low income communities. Secondly, other family
members are usually not present during school sessions which limits the role of the parent in
continuing the teaching at home. Centre based OPDs have a greater coverage of low income
groups and present an opportunity for persons with disabilities and family members to share skilloriented programmes and practice them at home. Demerits are that the frequency of inputs in an
OPD model is less, particularly for low income users. However, the major problem associated
with learning skills in all centre based services relates to the need for such learning to take place
in as normal and constant an environment as possible. A strange place and strange people
make learning more difficult for persons with disabilities and their family members. The centre
based services address skill learning in an environment inconsistent with the physical, social, and
cultural environment in which such skills will be applied.
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Firstly, the OPDs evaluated took place in large spacious buildings with decoration, furniture, and
aids not found in the homes of the urban poor. Programmes for toiletting could not be practised
with the therapist present as the toilets in the service centre were very different from toiletting
opportunities in slums. The same is true for feeding: practical training is not possible if food is
unavailable in centre based sessions, or if sessions are not held at appropriate meal times.
Secondly, in each organisation evaluated, rehabilitation professionals come from higher socio
economic groups than the urban poor. They communicate differently, both in terms of language
(e.g. English instead of local languages) and qualitative differences in idiom and dialect. Some
therapists were unable to explain activities in appropriate terms. In some cases, advice given by
professional therapy staff displayed a lack of understanding of life in low income communities,
particularly in relation to a material environment that did not exist. Whereas the special school
services evaluated have opportunities for therapy staff to make home visits, this was not the case
for ORD.
Outreach approaches in low income communities place skill learning closer to the physical,
material, and cultural conditions of persons with disabilities ’ homes. However, outreach centres
can still have the same barriers to appropriate skill learning as service centres. For example,
although outreach centres have a day care function which allows family carers time for other
activities such as work, some joint contact is necessary if skill learning is to be practised at home.
In the only outreach centre in a low income community evaluated, the building had no toilet.
Children were taken to a nearby house, but young adults who did not have bowel control were
excluded. Sessions were arranged either side of lunch time, so feeding was not practised. There
appears to be a need for outreach sessions to at least be combined with home visits. Although
this was part of the outreach programme, in practice home visits were not pursued and learning
did not take place in the home. The community based approach did combine activities in this
way.
Although the best learning environment is in the home, the evaluation found that workers must
have the appropriate skills and support to maximise the use of this environment. The generalist
rehabilitation workers were not addressing needs for daily living skills. They ignored these needs,
or offered stereotyped verbal advice rather than holding goal oriented practical activities for
learning. The classic example is the advice for toilet training that a persons with disability “be
taken to the same place at the same time every day" but with no follow up or practical assistance.
This appeared to be because the workers were generally de-motivated by their low honoraria,
insecurity, and absence of technical support in the community. Also, their recent training inputs
had been classroom based and given by centre based professional therapists, and covered
theory (such as anatomy) but was not followed up by practice. The same problem was true for
physical management.
3.2.3 Meeting the need for medical rehabilitation
Research tools used in the tracer study are included in the appendices, The tracer study
assessed 5 dimensions of quality;
A. Management by use of goals
B. Interpersonal quality
C. Daily living skills
D. Appropriate education or work plan
E. Technical quality
The tracer method was applied to service use by low income persons with disabilities. This
caused some difficulties as the number of low income users of some service approaches during
the evaluation period was very low. Similarly, the numbers of assessments made for each
difficulty group was low because of the small numbers of people available. However, the tracer
method does not aim to be a quantitative method. The tracer study was applied to four service
approaches in which medical rehabilitation sessions were delivered by the following types of staff:
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1.
2.
3.
4.
Home based_______
Community based
Centre-and-outreach
Centre based
generalist rehabilitation workers__________________
physio aides and special education aides
mixed physio aides and professional therapists
professional physiotherapists and special educators
A.
Management by use of goals:
Assessment of the management of an individual’s medical rehabilitation was made on the
assumption that good practice involved the setting of functional goals with which to structure
physical management and other inputs. All of the persons with disabilities assessed had goals
recorded in their records. Good practice would be indicated by the following relationships. Goals
should be recorded and used as a reference by service providers in each session. This was
assessed by comparing the goals given verbally by the service provider immediately after a
session with goals recorded in a child’s records. Good practice was determined by convergence
between these goals. Goals should be agreed in consultation between carers and service
providers. This was assessed by asking carers to list their goals and comparing these with those
listed verbally by service providers. Good practice was determined by convergence between
these goals. In the table below, convergence is presented in the form x/y where x represents the
number of assessments in which convergence took place, and y represents the total number of
assessments made. Therefore, 8/12 indicates that there were 8 examples of convergence in 12
assessments.
To generate comparative scores, these fractions have been calculated as
decimals.
Table 16: Management by use of goals
service approach
1. Centre
2. Centre-andoutreach
3. Community
based_____
4. Home based
staff type
professional
and
physiotherapists
special educator
mixed physio aides and
professional therapists
physio aides
generalist
workers
rehabilitation
Convergence between
goals of
service provider and
user’s record
12/15=0.8
Convergence between
goals of service
provider and service
user
9/15=0.6
8/12 =0.6
9/12 =0.8
10/13 =0.8
10/13=0.8
0/20 =0.0
9/20 =0.5
The use of goals in centre based, outreach, and community appears quite common with
convergence in between 0.6 and 0.8 of cases in both tests.
It should be noted that these
approaches involved i) professional physiotherapists and special educator ii) mixed physio aides
and professional therapists and iii) physio aides alone, with all proving adept at management by
goals. In the home based approach delivered by generalist rehabilitation workers, practical goals
had not been discussed and there were no recorded goals.
B.
Interpersonal quality
Quality of interpersonal processes was approached across a range of observational measures
and questions to persons with disabilities and their family members. A score for interpersonal
quality was calculated by dividing the number of measures passed by the number of measures
applied. The score for each service approach were: centre 0.9; centre-and-outreach 0.8;
community based 0.9; and home and referral 0.6. Quality was impressive in centre based,
outreach and community based service approaches. The interpersonal quality was least good in
the home based approach using generalist workers. This was because service visits were of
short duration, often perfunctory, and workers failed to offer any skills for home use. Instead they
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For all service approaches, performance against the impairment specific minimum technical
standards were poor. The type of worker delivering the medical rehabilitation had no overall
influence on technical quality. For example, none of the approaches, including the centre based
professional service met the minimum technical standards for cerebral palsy. In each impairment
group, there common reasons for the services failing to attain minimum standards:
1. Cerebral palsy: there were no records maintained of people’s contractures, even when
contractures are apparent and physical management applied to prevent development of
contractures. This deficiency was important in the zero score for the centre based approach ignoring failure to record contractures, the pass rate was 14 out of 15 and for the centre and
outreach approach which had an amended pass rate for cerebral palsy of 5 passes in 9
assessments.
2. Polio: some aids, appliances, and surgery were provided with no impact on functional ability.
This was particularly the case in the home based approach in which referral was the major
service offered. Service for those with less serious moving difficulties passed the assessment;
those for serious moving difficulties failed.
3. Communication: in failing assessments, service providers insisted on speech, and ignored
total communication
4. Epilepsy: none of the assessments for people with epilepsy passed minimum standards.
Responsibility for managing fits is passed to medical institutions. However, neither these
referral institutions or the partners address needs for access to appropriate information about i)
the background to the condition, ii) managing fits and iii) what to do when someone has a fit.
5. Learning difficulty: service provider does not address all needs for daily living skills.
Appropriate inputs for daily living skills were particularly absent in the home based approach
when workers largely ignored functional needs such as toiletting skills.
Summary of tracer study assessments:
The relative quality of the different models indicated by the tracer study:
Quality measure
1. Technical quality
2. Management by goals
3. Interpersonal quality
4. Daily living skills
€-HIGH QUALITY.
LOW QUALITY+
Centre based
Centre-and-outreach
Community based
Centre based______
Centre based
Home based
Home based
Home based
Home based
3.2.3.1 Other quality issues
Aids, appliances and surgery: the community studies found that many people that had been
supplies with aids and appliances were not using them. Observation indicates that compliance
with use of aids and appliances is greater in centre based services, although use of a calliper in
school did not mean that it was used at home. Indeed, for children with disabilities from low
income households, wheelchairs used in special school are often left at school as they are
unsuitable for home use. Others reported that they did not use aids and appliances during the
school holidays, even if there was contact with service workers during that time.
At least one community study raised concern about the functional impact of corrective surgery in
that city and indicated a need for a dedicated evaluation of surgical referral. One of the home
based services made referral for aids and surgery a priority activity without any follow up to
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assess the effectiveness of interventions. There is a need to recognise the functional limits of
aids, appliances and surgery and to monitor the effectiveness before more persons with
disabilities are referred. In this home based approach with medical referral, qualitative evidence
suggests that the high level of referral for corrective surgery is driven more by the presence of a
centre famous for the quantity of such surgery particularly for poor people, than by persons with
disabilities’ needs for corrective intervention or by the success of past intervention.
Physical management: in all organisations, persons with disabilities and their families do not
frequently practice physical management exercises, particularly if passive movements are
advised. Practice is time consuming and boring. Physical management based on positioning and
daily activities appears to be better sustained.
Physical management delivered in centre based services is, like other aspects of the service,
divorced from the reality of poor urban households. Some service deliverers are adept at making
physical management active, interesting and relevant, with an emphasis on activity rather than
exercise, but this is by no means the norm. With a high turnover of therapists (see section 3.3)
the quality of the most experienced therapist does not always influence the practice of short term
staff, some of whom suggested exercises which would be impossible in the small space and poor
material environment of a slum house.
The evaluation suggests that the best location for home management is in the community or
home environment. However, all home and community based home management was passive
and thus rarely sustained by persons with disabilities and their families. There was little flexibility
or creativity to make it more relevant to the every day life of poor urban families. All workers
demonstrated a need for regular technical support and ongoing training inputs.
Emotional support and counselling: The centre-based services have polarised extremes of
counselling. Children in the three special schools evaluated have regular group counselling
sessions from social workers, who also respond to individual needs, offer group sessions for
parents, and make home visits. This intensity of counselling provision is in contrast to that
available to users of OPD services. During OPD sessions with therapists and special educators,
there is little time for counselling despite the presence of social workers, whose major role is
assessing socio-economic status for calculating subsidies and keeping user records. In at least
one OPD and also the outreach approach in the same organisation, the role of social workers was
undervalued and was largely unplanned. Therapy workers questioned what social workers were
for, and yet offered little when service users described problems related to social factors. Indeed,
it was observed that when poor people did raise problems associated with poverty, centre staff
said “that is not our field” and focused on medical needs alone. Social workers should ideally
have a clearly defined role and help other staff to be aware of wider needs. The OPD
environment, and indeed all centre based facilities are far from ideal for counselling for families
from low income communities who expressed feelings of unease when visiting the centres.
Parents felt less able to ask questions and, of course, had to overcome barriers of distance to do
so. Unlike special schools, additional opportunities for parent: staff contact are rare. Home visits
are the exception rather than the rule. In centre based services, this difference between school
and OPD is also experienced in ‘peer counselling’ and emotional support from parents’ groups.
Such groups are based around special schools which include few parents from low income
communities.
Emotional support was a strength of the community based model. In this approach, each social
worker covered just one community, and spent most of their time making home visits and
supporting community activities. They had support from therapy aides and so were less likely to
focus on medical rehabilitation needs only. The comprehensive nature of activities, taking in
community health, socio-economic development, and credit groups mean that they were able to
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counsel and offer practical help for a wide spectrum of poverty issues not directly related to a
child’s impairment.
In the home based approaches, workers come from the same socio-economic stratum as people
in low income communities so have a good understanding of needs. The quality of counselling
and emotional support depended largely on the personality of the individual workers as training in
counselling skills was negligible, as was on-going support. Some workers, particularly women,
were diligent and sensitive while others were not, particularly as their own morale declined. For
even the most sensitive and able workers, good work was impossible when their rehabilitation
service was rejected by families when it was unable to address their prioritised needs.
From the evaluation of the disabled peoples’ and parent originated organisations, it was clear that
staff who are persons with disabilities or parents can offer considerable insight and appropriate
emotional support. Parents have found support from each other to be of considerable value.
However, this is by no means always the case. A need for understanding of disability must be
complemented with understanding of poverty if persons with disabilities and their families from low
income urban communities are to be supported. Services provided by persons with disabilities do
not necessarily address the needs of persons with disabilities if a gap in socio-economic status
separates the two.
3.3
STRUCTURAL ISSUES AND SUSTAINABILITY
The eight rehabilitation organisations have different staff structures, variously using professional
rehabilitation staff; para-therapy workers; generalist rehabilitation workers; and combinations of
these to deliver services. All but one of the partners had been in existence for between 10 and
40 years, therefore were sustainable in themselves.
The centre based professional approaches have all suffered from a shortage of available
therapists and a high turn over of these staff. Staff leave because salaries offered by these
rehabilitation NGOs are lower than in government sector and work hours are higher, leaving little
time for private practice. In at least one of the centres, the quality of OPD service was adversely
affected by a shortage of professional therapists on an on going basis. However, despite this
shortage and the fact that it trained non-professional therapy workers for other organisations, this
organisation eschewed the use of workers who were not professionally qualified in its own service
provision. Given the shortage and salary costs of professional therapy workers, others train and
employ non-formally trained staff. One of the centre based services for children with severe and
multiple impairments was training mothers from low income households to become rehabilitation
workers. One explicit reason for this was that such mothers of children with disabilities were less
likely to leave the organisation. They did not receive formally recognised training so they were
less likely to leave to take up better paid jobs elsewhere. However, they were asked to attend the
organisation as volunteers for up to two years before training or payment. This was regarded as
necessary to test their commitment, but was financially impossible for most mothers and is
perhaps a contributing factor to the fact that only three were trained in a two year period.
If workers live in the same communities as low income persons with disabilities, they are more
likely to be culturally, linguistically, and socio-economically attuned to their experiences and
needs, and able to address them within a familiar environment. However, this appropriateness
does not guarantee quality. It means little if training and support of workers is heavily oriented
towards activities outside the community such as medical referral, if training inputs are of poor
quality and do not empower workers to utilise their community knowledge, and if workers’ morale
is low.
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In the two municipal home based approaches the ‘workers’ are volunteers paid a monthly
honorarium. Worker morale was a key determinant of service effectiveness and sustainability.
The major issues affecting morale were:
i) Insecurity and lack of tenure: People had joined the work with the expectation that their
voluntary status would be regularised and they would become permanent employees.
However, this has not occurred and what is more, regularisation has now been stopped and in
both cities the future of voluntary workers’ contracts, entire rehabilitation activities, and the
wider development activities were in doubt.
ii) Low payment: Volunteers’ honoraria have not kept pace with the rising cost of living. In both
cities, the main reason for low quantity and quality of rehabilitation work was their inability to
survive on the honorarium paid. Most volunteers had been forced to take other paid work
which affected their work with persons with disabilities. In the two cities, the failure of
municipal authorities to sanction allowances for transport and training also caused financial
distress, and had a negative impact on community work.
iii) Lack of recognition for work: In both cities, rehabilitation workers were expected to do more
work and work longer hours than their peers in general community health and development,
despite getting paid the same honorarium.
iv) Secondment for other duties: Rehabilitation volunteers were frequently detailed for other
activities which interrupt their work with and for persons with disabilities and their families.
These are of varying legitimacy, ranging from health monitoring and anti-malaria drives to
attending functions for visiting donors and election duty.
There is considerable evidence to suggest that unless these issues are addressed, the use of low
paid volunteers by the Indian government to work with persons with disabilities and their families
will not be effective or sustainable.
The NGO non-professional workers in the community approach also complained of similar
problems related to low pay, but it appears that they are able to be motivated to continue quality
work. In their case, low wages were attributed by the NGOs employing them to restrictions placed
on wages by the international donors which support the activities.
3.4
PARTICIPATION
3.4.1
Staff participation
It appears to be the nature of rehabilitation NGOs that in the early development they depend
heavily on the personality and vision of a single person. Such dynamism is important, but can
have various negative effects. Firstly, when decision making falls to one individual, goals and
vision may not be shared, or even known, by the other workers. Thus, while the chief functionary
may see activities based on empowering persons with disabilities and their families, those at the
interface between organisation and persons with disabilities may deliver services using the
welfare model.
Secondly, with executive power in the hands of one individual, service
sustainability beyond their working life can be threatened. A more participatory and sustainable
approach was present in another centre-based service in which executive responsibility was
shared collectively by senior staff.
3.4.2 Participation of persons with disabilities and their families
In any organisation, any persons with disabilities’ groups and parents’ groups, will, in composition
and interest, reflect the socio-economic constituency of service users. In the centre-based parent
groups observed, discussion centred on issues such as tax relief for parents of children with
disabilities, and special allowances for government officers to avoid transfer away from the city of
their child’s rehabilitation service. Such concerns are exclusive to higher income groups. It is
important to realise that rights organisations do not represent all persons with disabilities and their
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families if participation of, and the needs of, the poor are not included. Centre based special
schools do not include the urban poor and parents’ groups do not address the needs of the urban
poor. Opportunities for the participation of people using OPD services are virtually nil. They don’t
come frequently enough to build networks and service use is equated with hospital visits; the
concept and opportunities for involvement beyond passive receipt of therapy are absent.
Participation of persons with disabilities and their parents in the outreach centre covering a low
income user group was gradually developing, and was being encouraged. However, it was clear
from interaction with parents and local staff that they were in awe of the visiting professional
support staff and thus had not increased the horizons of their participation very far. Regardless of
the statements made by the professional staff about processes of community involvement and
hand-over, the parents and staff were largely unaware of these and perceived the centre based
service as the source of key decisions and resources.
In home based services, participation of persons with disabilities and their families is limited if
active and empowering participation is not an objective of the municipal structure of which the
activities are part. The experience of both partners was that although participation of slum
dwellers was explicitly part of the development process and was supported by participatory
training for staff, it had no obvious effect in facilitating the participation of persons with disabilities
or their families. In fact, in one, the priority needs expressed by persons with disabilities and their
families which were for income and education, were ignored by middle level municipal
functionaries, who steered activities toward medical referral.
The most advanced participation of persons with disabilities and their parents from low income
communities was experienced in the community based model. A long term presence in the
community, an evolution towards community control, and a comprehensive approach to
development for and with persons with disabilities which included medical rehabilitation,
education, income generation, credit groups, community health, cultural activities and sports for
them and their family members, had facilitated considerable participation which had grown well
beyond the limits if service use. An indication of the level of this participation was the fact that
persons with disabilities were empowered to express their complaints about the service provider
during evaluation meetings.
3.5
ADVOCACY, AND SELF ADVOCACY
Throughout the evaluations, ‘rights’ generally focused on disability issues such as reservation,
and not on the rights of persons with disabilities to enjoy equal opportunities as other citizens.
Persons with disabilities, parents and staff had little to say about wider rights issues, and rights
were not used as a frame for activities.
To a degree, centre based approaches advocated the rights of persons with disabilities to
government benefits, but this was virtually limited to users of daily services, of whom very few
were poor. OPD sessions have little time for discussion of rights. Additional workshops have
been organised, but these demand an additional journey to the centre. One centre now has a
person with disability trained in advocacy issues to lead workshops with service users and staff.
However, the degree to which this will address the issues of disability and poverty, and the rights
of persons with disabilities in slums, is not assured. Sensitivity to disability does not guarantee
sensitivity to the lives and needs of poor people.
In home based and community approaches, awareness of rights was mixed.
Where
empowerment and participation of staff and service users was developing, the concept of rights as
a frame for development for persons with disabilities was growing. Where staff at the interface
with the community had little power and persons with disabilities were viewed as passive
recipients, rights had little practicality.
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3.6
THE COST OF APPROACHES TO SERVICE PROVISION
The calculation of comparative service costs is difficult given the nature and variety of the
rehabilitation services evaluated. Calculating the costs with a view to comparison between
approaches is even harder. The different approaches serve a variety of user groups defined by
impairment and age. Urban persons with disabilities and their families have an endlessly varying
situation of experiences and needs, depending on impairment, available support, early
intervention, previous rehabilitation activities and crucially, socio-economic status. There can be
no measure of effectiveness with which to set against cost, and even attributing a crude cost to
each service user is difficult given the varying frequency and duration of service sessions.
However, calculation of the annual cost of each service per capita has been attempted. This is
based on the annual budgetary data available from each partner. It does not include the capital
cost of setting up centre based services. It uses estimates of the number of users of each
service; this too was problematic as these might include those who use services daily, and those
who have contact once a year.
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Table 18: Crude annual costs of service use per person with disability served
crude cost per
Total cost of
estimated
user per year
service
per
year
number of
Service approach and user group
(Rs.)
service
(Rs.)
served
users
Centre with outreach
cerebral palsy, and multiple difficulties
64
1. Special School12
49
2. Vocational Training Centre______
233
3. Out Patients Department_______
4. Outreach centres1J:
9
/. parent group____________
14
_____ /7. slum school_____________
12
_____ Hi. slum school_____________
12
_____ iv. special unit_____________
12
_____ v. peri-urban______________
15
_____ vi. welfare campus__________
16
5. Outreach centre in low income
community___________________
90
_______ mean outreach cost_______
Centre based
cerebral palsy, plus multiple difficulties
418
1. Out Patients Department_______
40
2. vocational training centre_______
200
3. Special school________________
Centre based
mainly moving difficulties____________
60
1. vocational training centre_______
200
2. Special School_______________
537
Community based
mainly moving difficulties expanding to
all difficulty groups________________
250
Home based with medical referral
all difficulty groups
10,275
12,026
1,932
6,57,631
5,89,298
4,50,179
1,76,397
2,61,314
1,72,615
1,22,715
98,715
1,21,195
87,354
19,599
18,665
14,385
10,226
8,226
8,079
5,460
10,40,305
11,559
4,71,008
4,64,240
2,456,800
1,127
11,606
12,284
6,55,152
10,56,986
14,18,667
10,919
5,285
2,669
4,20,816
1,683
It must be noted that the centre based costs presented above do not include the costs borne by
the service users. For example, the mean transport expenses for OPD users in the first
organisation in the table were Rs.29.9 per visit and the mean number of visits per month was 2.6.
Assuming constant service use over a year, a crude mean cost of transport per year for OPD
users can be calculated as Rs.727. Thus the cost of service provision of Rs. 1,932 per service
user per year increases to Rs.2,659 if transport costs are included. The crude transport costs per
year for the second OPD can also be calculated: the mean number of contacts per month is 1.7;
the mean cost of transport is Rs.26.8; and the crude mean cost of transport per year is Rs.579.
This makes a combined cost of service provision and transport of Rs. 1,706 per year. These
figures would increase further if other costs such as food and work time lost were included. When
comparing the cost of OPD with community based services it should also be noted that the mean
frequency of service contact in the OPD described is 1.7 times per month. The mean for the
community based service was 10.4.
12 costs do not include any building costs.
13 the costs of seven centres were estimated. Only one was in a low income community and not
part of a larger institution.
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SECTION 4
TOWARDS A MODEL OF URBAN COMMUNITY BASED REHABILITATION
The project has explored the needs and experiences of persons with disabilities and their families
in low income communities and evaluated current models of delivery of disability services to the
urban poor. It was anticipated that one of the approaches or a combination of the elements from
different approaches, would emerge as a model for urban community based rehabilitation. There
were unfortunate administrative delays in the implementation of the integrated model (see
organisation 5 in table 1, page *) proposed as early as 1990, and this was not the case. However,
the study found compelling evidence that suggests that certain characteristics would be
appropriate in such a model, and a theoretical model emerges from this study evidence.
A model is a conceptual guideline or ideal which can be practically adapted to meet a specified
objectives and outcomes. This ideal should be understood by all those involved.
The objective of this model is inclusion of persons with disabilities in all mainstream activities
through equalisation of opportunities.
•
•
•
•
•
•
It is a strategy integrated into all development activities in urban areas
It will integrate with existing structures, rather than duplicating them
It is not a centre based or outreach model
It starts from the planning commission and works throughout all ministries through to local
bodies and their activities.
It is not a scheme only of the Ministry of Welfare.
Persons with disabilities and families participation is a prerequisite for this model.
Government should cover the aspects which it can do, such as infrastructure development,
education, and transport. NGOs should do the things that they are good at, such as mobilising
communities.
All action should be channelled though urban bodies and community development structures, and
should not be medicalised.
At the local level the appropriate body for implementation is the municipal authority and not the
metropolitan development authority. The GOI proposed urban community development societies,
which will play a key role in converging a variety of sectoral inputs at the community level, will also
play a key role in this model.
The front line workers are suitably paid urban community development workers of the local body
who should be equipped to include persons with disabilities in their activities. They will be
supported by full time community development specialists trained in social aspects of disability
such as inclusion, the social model, the barriers approach, and technical aspects of impairment
and disability.
There is a precedent of the Ministry of Rural Development’s CAPART (Council for the
Advancement of People’s Participation in Rural Technology) initiatives in rural areas of promoting
a scheme to encourage persons with disabilities to organise themselves.
In a similar manner,
community facilitators (animators) will be needed to organise groups of urban persons with
disabilities and families to formulate their needs and express them to service providers. The
services should not be pre-determined, but should develop with service providers in a flexible
way. The community facilitators will work for two to three years with a given group of persons with
disabilities and will move on to other localities. It is expected that during this time, groups of
persons with disabilities would have developed sufficient leadership to be self sufficient and
support other groups. They should be full time as they will work with many communities and
should be adequately paid.
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Government (Ministry of Urban Development and Ministry of Welfare) should fund mainstream
NGOs to employ the facilitators to do this work. Training of facilitators should be by NGOs which
do general development training, with additional inputs on disability, and not by disability
organisations.
Medical rehabilitation referral will be from community workers to existing government and NGO
centres but should be limited to interventions that can only be done in centres. The study found
that poor people cannot come to centres therefore the centres should share skills with families
and community workers who can apply them in the community.
Disability NGOs’ role is limited to skill sharing and referral where these cannot take place in the
urban community. The role of disability NGOs experienced in community work is to inform
mainstream development NGOs on how to include persons with disabilities in all of their work..
All service providers’ capacity to respond to the needs of persons with disabilities and families will
be developed through awareness workshops and appropriate technical orientation. The inclusion
of persons with disabilities should be seen in a similar way to gender work and financed
accordingly.
The outcome of the model should be the inclusion of persons with disabilities in urban
development, inclusive education, work and training, and all mainstream activities.
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SECTION 5
CONCLUSIONS AND POLICY RECOMMENDATIONS
Introduction:
This study approached the needs and provision of services from the perspective of poor urban
persons with disabilities. It is was known that services for persons with disabilities in both NGO
and Government sectors exist in urban areas. This study aimed to examine if they reach poor
urban persons with disabilities, and if they meet real needs. The study did not specifically.
examine all available service structures individually.
The policy recommendations described below are output of the study, and from discussions at the
three city workshops and national workshop. They have been developed to the extent possible
following this process. Identifying opportunities for further developing links between the needs of
persons with disabilities in the community and the existing structures at state, central and NGO
sectors, requires further dissemination of the findings of this study within those structures an
examination of opportunities with those structures.
Some structures are already present such as the Project Integrated Education for the Disabled
(PIED), and VRC, but in practice the coverage is limited. For example, in the case of PIED, by
1995 it had been implemented in 10 demonstration sites in 8 states. However, these did not
include the three cities included in the UCBR Project. In the case of VRCs, although VRCs have
been set up in Calcutta and Bangalore (*check), none of the adults with disabilities sampled in the
three cities had used VRC services. It appears that some developments have not had a
significant impact on the urban poor as sampled in Visakhapatnam, Calcutta and Bangalore.
What the study has shown is that some integration of persons with disabilities is taking place.
Some children with disabilities are attending mainstream schools. Some persons with disabilities
are attending mainstream vocational training. Some persons with disabilities are working and
earning in the mainstream of their community. Policy and practice should encourage this to grow.
1.
Disability and poverty must be addressed together.
This study found that, whatever the situation of poor families, there were additional costs related
to disability, and reduced opportunities for paid work, for persons with disabilities and their
families. Poor urban persons with disabilities and their families should receive priority in
mainstream urban development, not just through legislation but in practice.
1.1
The needs of persons with disabilities should be included in all mainstream development,
including urban poverty eradication programmes.
1.2 The barriers that prevent this are economic, structural, environmental and attitudinal. These
should be identified, analysed, and removed.
The principle of inclusion means that persons with disabilities and non-disabled people have equal
opportunities to share in mainstream activities. It does not mean an additional, separate,
provision under the same development structure.
For example, in inclusive community
development, persons with disabilities take part in mainstream skills training with non-disabled
people: they are not offered a segregated version under the same budget.
2.
Representation of poor persons with disabilities must be a foundation of their
inclusion in mainstream development.
This study found that the priority needs expressed by urban poor persons with disabilities and
their families are for income and education, priorities in common with poor non-disabled people.
This study found one example of an organisation started by persons with disabilities which had
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enabled poor persons with disabilities and their families to give voice to their needs. Importantly,
this organisation addressed the needs through a community development approach.
2.1
Policy and practice should enable persons with disabilities and their families from low income
areas to organise themselves to express their own needs in the development process.
This study found that women with disabilities were significantly less likely to attend school or do
paid work than men, and were perceived to be exposed to greater risks relating to community
prejudice, lack of respect, and sexual violence. In addition to the usual burden of a woman’s role
in family life, women and girls took on considerable additional work in caring for persons with
disabilities, often in isolation, and without additional support, or appreciation for this effort.
2.2 Policy must ensure the equal representation of poor urban women with disabilities and their
female care givers to express their specific needs through a community based approach.
This study found that a barrier to persons with disabilities’ inclusion in structures is the excluding
attitude of staff in government departments, community development, public transport, hospitals,
schools, NGOs, urban development, and donors. Attitudinal barriers reinforce economic,
structural, and environmental barriers, and promote an atmosphere in which these other barriers
are unlikely to be addressed.
2.3 Awareness and action training on disability and poverty, centred around the social model of
disability and barriers approach, and lead by persons with disabilities, should be compulsory
for all central and state government staff, municipalities, NGOs, donors, politicians, and
elected representatives of the people.
Specific examples of opportunities for integrating persons with disabilities into a network of
community development services, from the relevant Ministries’ actions to community level
structures, arose from the study findings from the city workshops, and from the National
Workshop. These are included in detail in section 7 below. The most important examples are:
2.4 Planning Commission at the centre and state planning bodies: advisory committees should
include persons with disabilities, and those with direct experience of working with persons
with disabilities in poor communities using a community development approach. They
should ensure the implementation of these recommendations in all planning processes.
2.5 All urban local bodies such as municipalities, corporations, and community development
societies should ensure adequate resource allocation in their plans for the implementation of
inclusion of persons with disabilities in all their programmes. This should include support for
the informal sector, such as self employment schemes and allocation of space for small and
medium sized enterprises.
2.15 All concerned state departments and undertakings should also develop and implement
policies for the inclusion of persons with disabilities in their programmes.
2.6 Ministry of Welfare: in addition to expediting the appointment of the Commissioner and the
implementation of the Disability Act, the Ministry of Welfare should co-ordinate and promote
the inclusion of persons with disabilities into other ministries’ policy and practice. It should
also monitor the effectiveness of its own activities such as surgery, and supply of aids and
appliances. The Ministry of Welfare with the Ministry of Health should review the current
system of eligibility criteria as described above.
The study found that persons with disabilities were not being included in government, NGO ad
donor funded activities. Recognising persons with disabilities ’ rights as citizens under India’s
constitution, their inclusion should be compulsory in government, NGO, and donor urban
development activities. Inclusion can be enforced through budget allocation, much as all
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development budgets and activities must include the needs of women. Government and donors
should adopt this as a pre-requisite to resource allocation.
2.17 Financial resources for urban development in government and NGO sectors should be
allocated only when the inclusion of persons with disabilities is explicitly addressed in their
planning and implementation.
3.
Support the family and community
The study found the greatest support for persons with disabilities came from their own families,
and their immediate communities, and not from government or NGOs. The greatest needs
expressed by persons with disabilities and their families were economic. Those persons with
disabilities who were working were doing so in family based and self employed petty businesses
near their homes. Others, particularly those with severe and multiple impairments and their care
givers, also needed emotional and social support. Mothers expressed the opinion that their
support for their disabled family members would be easier if their family poverty was addressed.
3.1
Support, including money, should be given to family and community based income
generation groups complemented by group managed day care, and emotional and social
support.
Persons with disabilities and their families also wanted:
i. mainstream work.
ii. grants or loans for starting income generation.
iii. skills training.
Provision of loans for persons with disabilities already exist in India, but in the three community
studies only one of 587 persons with disabilities interviewed had secured a loan.
3.2
The Disability Act, in relation to work in the organised sector, should be enforced.
3.3
Policy and practice should treat persons with disabilities as a priority group in micro- finance
schemes.
3.4
Loans should be available to care givers when persons with disabilities cannot work
themselves on account of their disability.
3.5
Both mainstream and poverty-focused skills training should be accessed by and adapted for
persons with disabilities, and include basic numeracy and literacy skills.
This study found that government pensions for persons with disabilities are limited in number,
inaccessible, and inequitably distributed.
3.6
Pensions should be allocated to persons with disabilities where the state is unable to
provide, whether directly or indirectly, access to work, and priority should be given to those
who require full time care.
The study found that more children with disabilities were served by local mainstream schools than
by special schools.
3.7
Mainstream schools should be supported to include the needs of all children, including
children with disabilities, within their catchment area by changing national and state teacher
training curricula, the physical environment of schools, learning materials, and providing
disability awareness training for all staff, non-disabled children and their families. Local
resource centres to provide support for those with more complex educational needs should
be promoted.
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4.
Centre based services do not meet the needs of urban poor persons with
disabilities
This study found that centre based services which focused primarily on medical rehabilitation and
segregated education do not include or meet the expressed needs of poor urban persons with
disabilities. This study found that centre based services lead to unequal distribution of resources.
Centre based services focus on medical needs which are not the priorities of poor people.
Medical rehabilitation has a limited role in meeting the needs of the urban poor. It is inappropriate
for centre based medical services to manage community based services.
4.1
Medical services should demonstrate that they have practical contributions to make in
relation to the needs of poor families and the strengthening of community workers. They
should also demonstrate their coverage and effectiveness.
4.2 There should be education within community services about the limitations of medical
rehabilitation so that excessively high expectations are not raised.
Poor people are unable to access centre-based services because of barriers related to the cost
and time of travel. These become increasingly important when non-mobile children get older and
heavier.
When persons with disabilities express needs for medical rehabilitation, the centre based medical
and rehabilitation professionals tend to deliver services in a way that is socially, culturally,
linguistically, environmentally and socio-economically divorced from the reality of the poor urban
home. This study found that adaptation of centre based services to the needs of the poor, such
as waiving user fees, and allowing infrequent attendance, does not ensure that poor people are
included.
4.3 Granted that all services are inadequate, financial and skill resources should be directed
towards community based structures that demonstrate that they effectively reach poor
people. No additional resources should be put into centre based services unless they meet
the criteria of equity (priority coverage of those most in need) and quality, and support
community based approaches appropriate for poor urban communities. Resources for other
centre based services should not be increased.
4.4 The existing resources and technical skills of centres should be used as a tool to support
community approaches within a strategy of community development. Recognising the
creativity and existing resources amongst poor families and communities, training needs
(course content, methodology and materials) should be jointly and flexibly developed by
persons with disabilities and their families, community workers and their organisations,
together with professionals. This implies the reorientation of professionals to recognise the
relationship between poverty and disability.
This gradual shift of resources from centres to community should determine the policy and
practice of government, NGOs, and donors. For example, in the tenth five year plan, resources
for community based approaches should exceed those for centre based services.
5.
NGO and government roles
There is often an assumption that NGOs are more successful than government at reaching poor
people at community level. This study did not find evidence to support this assumption at least for
services for persons with disabilities in urban areas. In the three community studies, less than 5%
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of persons with disabilities sampled had used NGO medical rehabilitation services. The number
of persons with disabilities accessing government services in relation to their difficulties far
exceded the number accessing NGO medical rehabilitation services. The study found that the
most important determinant in reaching the urban poor was a community-based approach as part
of general community development, rather than a centre-based service. This was true for both
government and NGO services. As well as better coverage of poor people, community based
services are delivered in a way more appropriate to the lives of the poor urban family. The NGO
community based service evaluated was of better overall quality than the government community
based services evaluated.
5.1 Allocation of resources for persons with disabilities should continue through the community
development structures of both government and NGO sectors.
6.
Monitoring and evaluation
This study found that coverage of urban poor persons with disabilities by service organisations is
extremely limited, despite the fact that service providers thought it to be good. This indicates a
need for improved monitoring and evaluation which measures both coverage and quality. For
example, it is not acceptable to increase the coverage of poor people by running services which,
in practice, differentiate the poor from the privileged. This study found that 88% of persons with
disabilities had used medical rehabilitation services, mostly government hospitals, but the services
received were of poor quality and expressed medical needs were not met.
6.1 Government, Municipal, and NGO service providers should monitor their coverage of the
urban poor. They can do this by maintaining simple socio-economic information about their
service users and compare this with socio-economic information from their city, for example
from census and urban data bases.
6.2 Specialist medical, rehabilitation, special education, and community based services should
be subject to appropriate evaluation of effectiveness and cost.
Monitoring effectiveness is also necessary to ensure that development meets the needs of poor
persons with disabilities and their families.
6.3 Government and donors should make effectiveness in meeting the real needs of urban poor
persons with disabilities a prerequisite of resource allocation.
This study found that government benefits have extremely limited coverage and are not equitably
distributed. Significant barriers to access exist in government structures.
6.4 Government should monitor the coverage of welfare provisions such as disability certificates
and loans, and address institutional and attitudinal barriers to their distribution.
7.
Specific examples of opportunities for integrating persons with disabilities into
community development services
Specific opportunities for integrating persons with disabilities into a network of community
development services, from the relevant Ministries’ actions to community level structures, arose
from the study findings, and from the city workshops and National Workshop.
Important
examples are listed below.
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The study found that access to water supply and in particular to sanitation caused difficulties for
many people in poor urban communities but access was particularly difficult for persons with
disabilities.
7.1
Ministry of Urban Affairs:, for ensure that all infrastructure, particularly water supply and
sanitation, is accessible to all persons with different types of disabilities. All urban
community development should include persons with disabilities in all activities, especially
poverty eradication, for example Swarna Jayanti Sarkari Rojgar Yojana (SJSRY)’s thrift and
credit programmes. Slum Improvement Projects, and the National Slum Development
Programme, and the local bodies referred to in section 2.5 above. Women with disabilities
should be prioritised in all urban development.
7.2 Ministry of Labour: ensure equal opportunities in employment and training for persons with
disabilities by enforcing current legislation on disability, and enhance provisions for training
and employment, such as integrating persons with disabilities into mainstream Industrial
Training Institutes and Polytechnics, and extending legislation to include training and
employment for those with learning difficulties.
7.3 Ministry of Education: develop and implement a policy of inclusive education whilst
recognising the efforts that teachers have already made in integrating children with
disabilities in many schools, and allocate resources to promote inclusive education. This
includes changing national and state teacher training curricula, the physical environment of
schools, learning materials, and providing disability awareness training for all staff, non
disabled children and their families. The Ministry should allocate resources such that
persons with disabilities have equal opportunity to benefit from the Universalisation of
Primary Education, mainstreaming them into the education system through condensed and
bridge courses and open schools. Clusters of mainstream schools should be supported by
resource centres to facilitate the inclusion of all children, including children with disabilities,
within their catchment area.
7.4 Ministry of Women and Children’s Welfare: ICDS and all other programmes under the
Ministry, should include all women and children with disabilities in all policy and practice.
7.5 Ministry of Health and Family Welfare: channel resources to support persons with disabilities
away from centre based medical services and into community based services. Community
health workers should be taught about the realistic expectations of the role of medical
services in relation to disabilities. The Ministry of Health and Family Welfare and State
Departments should monitor the effectiveness of surgery, aids, appliances and other medical
intervention for persons with disabilities. The Ministry of Health and Family Welfare, together
with the Ministry of Welfare should review the current system of eligibility criteria for
government benefits, and delegate responsibility for the issue of disability certificates to local
health facilities.
7.6 Ministry of Finance: ensure that a quota is reserved for persons with disabilities in all
schemes for financial assistance for self employment, and specific action to improve access
to this quota is taken.
The Calcutta city workshop and National Workshop discussed the importance of the lack of
information about available disability services and benefits at the community level as a barrier to
access.
7.7 Ministry of Information and Broadcasting: promote programmes of successful inclusion of
poor persons with disabilities in community based development programmes and positive
images of poor persons with disabilities.
7.8 The various Ministries and Departments concerned with transport: actively address the issue
of accessibility of all transport to persons with disabilities especially buses and trains.
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APPENDIX 1:
COMMUNITY STUDY INTERVIEW SCHEDULE (ENGLISH VERSION)
INTRODUCTION
READ: My name is
. I am a member of a team collecting information about the use of services for
persons with disabilities. I would like to ask you some questions about your experiences, to help plan services in
the future. This will take about twenty minutes. Anything that you say will be confidential.
FIELDWORKER CODE I I
I
ELIGIBILITY CRITERIA
NOTE:
persons with disabilities are eligible if they are not a user of any of the eight organisations NOW.
1a) Have you ever benefited from or
used any organisation related to your disability?
if yes -
b) What organisations have you
used or benefited from? (list)
|yes|
(if yes follow filter b below;
if no - go to next question)
|no |
1
2
3
4
if any of 8 study organisations are mentioned go to c; otherwise go to Section A
c) Do you consider yourself a user of
(name relevant organisations) now?:
IF ‘YES’ - TERMINATE THE INTERVIEW AND EXCLUDE THE DATA
|yes|
|no |
circle |excluded|
if no -> d) Why don’t you use (name
organisation(s) now?
CONTENTS
Section A - IDENTIFICATION
Section B - USE OF SERVICES
Section C - EDUCATION
Section D - TRAINING AND EMPLOYMENT
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Section A -IDENTIFICATION SECTION
Ensure that you are recording details of the correct respondent
NB/
I I I—I
11) Identification number
I2) Means of identification/location:
A1) Person with disability’s name:
A2) Gender:
(do not ask)
|m|
I l-_1
A3) age
Aim to get real
age. If impossible,
classify in age
categories
|
|
|
|
|
116-20
\21-25
|26-30
\31-35
|36-40
| \41-45
I \46 +
|no|
A4) Is the person accompanied (in the interview)?
|yes|
A5) Who is the respondent:
\person with disability\
if ‘other" - b) Are you the usual carer?
A6) Religion
A7) Caste
A8) Household’s first language
|yes|
(if ‘other’ follow filter b)
|no |
|Christian|
|Muslim|
|Hindu|
lofherj
|Other|
I now want to ask a few questions about where you live and your home:
A9 What is your address?:
a) house details.
b) area
A10)Who is the main bread winner in your household (name):
|m|
A11 a) Gender of main bread winner: (do not ask)
(ml
|f|
b) Occupation of main bread winner (details):.
A12) Does this house belong to your
household, or is it rented?:
| \Owned
| \rented\ \free occupation
A13) OBSERVE - DO NOT ASK :
a) What are the walls of the house made of?
|wood| |plastic| |mud|
|brick|
[concrete)
|other|
|asb. sheets)
| con crete |
b) What is the roof of the house made of?
|plastic| |thatch| |metal|
|tile|
|dk|
|NR|
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Section B- USE OF SERVICES
B1) What is youri(name)'s difficulty?_____________
note in full and probe - full description, onset, cause,
B2a) Do you know the medical diagnosis of this difficulty?:
if yes b) What is the diagnosis?
|yes|
\no |
(if yes follow filter b)
READ: I now want to ask you (name individual) some details about any services and organisations that you /
(person with disability’s name) have used in relation to your difficulty in (give appropriate functional description).
Read the question for each of the four categories in turn and follow questions a, b. Write notes with as
much detail as possible.
Do not probe with examples - just use “anything else?” until exhausted. The only explanation given
should be of terms such as ‘welfare’.
B3a)
B4a)
B3a)
Have you used any
MEDICAL rehabilitation
|yes| |no |
services/organisations to help
with this difficulty?
B4b) What?: (write)
B4a)
B5b) What?: (write)
Have you used any
EDUCATION related
|yes| |no |
services / organisations
to help with this difficulty?
B5a)
B5a)
Have you used any
EMPLOYMENT related
B6b) What?: (write)
|yes| |no |
services/ organisations to
help with this difficulty?
B6a)
B6a)
Have you used any
WELFARE related services/
B7b) What?: (write)
|yes| |no |
organisations to help
with this difficulty?
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Section C - EDUCATION
NB/ SECTIONS E AND F FOCUS ON THE SAMPLED INDIVIDUAL
C1a) Have you ever attended school?:
|yes|
|no|
-+if yes b) Do you attend school now?
|yes|
|no |
(if yes follow filter b;
if no go to QC2)
|A/A|
c) What is the highest grade class that you reached? (circle one only):
|1 I
I2|
I3|
I4|
I5|
I6|
I7|
I8|
|9| |10| |higher|
|NA|
appropriate):
d) What type of school do/did you attend? (tick for primary and/or secondary as
tick one only for
for primary and
one only for secondary
as appropriate
PRIMARY SCHOOL
SECONDARY SCHOOL
| | special school
| | mainstream school
| |of/7er (what?)
\NA\
| | special school
| | mainstream school
| jof/jer (what?)
\NA\
|no|
\NA\
|yes|
|no|
(if yes follow filter b',
if no go to QD2)
c) Is this work only for disabled people?:
|yes|
|no|
|A/A|
d) Is this workplace only for disabled people?:
|yes|
|no|
|A/A|
C2) Have you ever had any help with literacy?
|yes|
Section D1 - EMPLOYMENT
D1a) Do you work to earn money?:
if yes b) What work do you do?:
e) How did you get this work?:
Section D2 - TRAINING
D2a) Do/have you ever received training to do work?: |yes|
|no|
(if yes follow filter b;
if no go to Q.D3)
|yes|
|no|
|A/A|
->/Tyesb) Are you training to do work now?
c) What work are/were you training to do?
d) Where do/did you do this training?:
e) Is/was this training only for disabled people?:
|yes|
|no |
|A/A|
f) Is/was the training at a place only for disabled people?:
|yes|
|no |
\NA\
g) How did you get this training?
FOR ALL D3) What work would you like to do?:
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APPENDIX 2: COMMUNITY STUDY FOCUS GROUP DISCUSSION PROTOCOL
PERSONS WITH DISABILITIES IN THE COMMUNITY
•
•
•
Introduce participants
Start the discussion guided by these headings
Develop discussion using the non-leading probes developed in training and method notes from previous
discussions
A. EXPERIENCE OF BEING A DISABLED PERSON IN THE COMMUNITY
A1. Ask each participant to briefly describe their history/their child’s life
A2. What does it mean to be a person with disability in your community today?
A3. What are the needs of disabled people in your community? (List them on paper)
B. LIFE EXPECTATIONS:
B1. What are the expectations of disabled people in the community?
C. THE COMMUNITY AND COMMUNITY ATTITUDES:
C1. What effect do the community have on the lives and experiences of disabled people?
C2. What support for disabled people is there in the community
C3. What would change to make life better?
D. SERVICE USE AND NON-USE
D1. Which organisations and services have they used/visited/had contact with in relation to
disability (i.e. medical, rehabilitation, aids and appliances, welfare?)
their
D2. Have they heard of the partner organisations in this city?
D3. Have they used them (describe)
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Appendix 3:
Types of training experienced by persons with disabilities in 3 community studies
Place of training
1. ITI (mainstream)___________________________
2. Training Institute (mainstream government)_____
3. Training Institute (segregated, Ministry of Welfare)
4. ‘Vocational training for Physically Handicapped’
5. Indian Council of Rehabilitation (NGO)_________
6. Vocational Training Centre for the Blind (NGO)
7. Sranuk Vidya Peeth (NGO?)_________________
8. Nehru Yuva Kendra (Govt, run through NGOs)
9. Segregated vocational training (NGO)__________
10. Special school vocational training class________
11. Private business___________________________
12. Private training centre______________________
13. Vocational training at school_________________
14. Taught informally by local person_____________
15. Local factory training_______________________
16. Family trade
TOTAL
Bangalore
Calcutta
Visakha
patnam
1
1
1
Total
3
1
1
"T
1
2
2
1
1
3
1
7
8
3
1
1
6
2
25
"a
1
5
15
1
3
2
1
1
1
"14
4
2
1
6
7
47
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APPENDIX 4:
EVALUATION QUESTIONNAIRE (ENGLISH VERSION)
USER INTERVIEW SCHEDULE
INTRODUCTION AND IDENTIFICATION SECTION
READ: My name is
. I am a member of a team carrying out an independent evaluation of the
services provided by (name organisation). Our work aims to help plan future services for persons with disabilities,
and we are interested in the experience of those using the service now. I would like to ask you some questions about
your use of the service today. Anything that you say will be confidential. The things that you say will not be
disclosed to anyone in (name organisation) in connection with your name.
FIELDWORKER CODE J|]
Ensure that you are recording details of the correct respondent
NB/
Illi
(for office use only)
II) Identification number
12) Location of Interview:
tick one only
| | in home
| centre in community
| | main organisation centre
| | other (what?):
Section A - USER DETAILS
Al)User’s name:
A2) Gender:
(do not ask)
A3) User’s age
|m|
|fl
UU
|
I
|
|
|
|
I
Aim to get real
age. If impossible,
classify in age
categories
A4) Is the user accompanied?
|no |
|yes|
A5) Who is the respondent:
if 'other ’ - b) Are you the usual carer?
|Hindu|
A6) User’s religion
A7) User’s caste
A8) Household’s first language
116-20
\21-25
\26-30
\31-35
\36-40
\41-45
\46 +
| user)
| other]
lyes]
|no|
(if ‘other' follow filter b)
[Christian]
(Other]
|bc| |st| |sc| |fc| |N/A|
(mother tongue)
|Muslim|
READ: I now want to ask a few questions about where you live and your home:
A9) What is your address?: a) house details
b) area
A10) Who is the main bread winner in your household (name):
what is the occupation of bread winner?
All) Gender of main bread winner: (do not ask)
|m|
A12) Is it your own house or is it rented?:
| |Owned
A 13a) What are the walls of your house made of?
[wood] (plastic] |mud|
[brick]
b) What is the roof of your house made of?
|tile|
Iplastic] (thatch] |metal]
If]
| |free occupation
| (rented
[concrete]
|dk|
|NR|
|asb. sheets] [concrete]
|dk|
|NR|
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Section B - USE OF THE SERVICE
READ: I now want to ask about your use of the service provided by (name organisation) today.
B1) What was the main purpose of yo\id(user’s) use of (name organisation) today?
note in full
B2) What is your/(z7<7/ne/s difficulty?____________
note in full and probe - full description, onset, cause,
B3a) Do you know the medical diagnosis of this difficulty?:
—ifyes b) What is the diagnosis?
|no |
|yes|
(ifyes follow filter b)
)
(Diagnosis from records - office use only
TIME
READ:
I now want to ask about the time that you have taken using this service today.
NOTE: USE EITHER B4 AND B5 (IN HOME) OR B6 AND B7(IN CENTRE)
IF IN USER’S HOME
B4)
How long was the session today?:
(probe - estimate, ask start time and finish time)
B5a)
Did you wait in especially for the session today?:
ifyes -
hours
|yes|
|no |
mins
|dk|
|NA|
(ifyes follow filter b)
b) How long did you spend
waiting for the session today?:
OR
IF SESSION NOT IN USER’S HOME (IE IN CENTRE ETC)
B6a)
How long was the session today?:
(probe - estimate, ask start time and finish time)
hours
mins |dk|
|NA|
b) What time did you leave home today (approx)
c) What time will you expect to get home today?
TOTAL TIME SPENT
hours
USER COSTS
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READ: Our study is interested in how much the services provided by (name organisation) cost to those using them.
I would like to ask about your experience TODAY.
B7 to BIO)
When using (name organisation ) TODAY, did you spend
any money on the following things?
b) How much?
a) Spend money?
circle one only
B7) Consultation
|yes|
|no |
|dk|
R
B8) Medicines (inc.
purchased prescriptions)
|yes|
|no|
|dk|
R
B9) Equipment
|yes|
|no|
|dk|
R
B10)0ther
|yes|
|no|
|dk|
R
READ:
I now want to ask about other costs related to your experience today.
TRANSPORT COSTS:
Bl 1)
IF THE USER HAS TRAVELLED TO THE SESSION
How did you/the user travel here today?:
Tick one. For mixture tick
one covering largest
part ofjourney. Record
all expenditure on transport
below.
Bl 2a)
Bl 3a)
c) If over R.X ask
“what for? ”
| | private car
| | taxi/rickshaw
| | public bus —> did he/she use bus pass? |
| | school bus
| | bicycle
| | walk
| | other (what?)
| | NOT APPLICABLE
(COST FOR USER) Did you spend
any money on transport (for the user?):
|yes|
b) How much on the way here?
R
c) How much on way home (estimate)?
R.
(COST FOR ACCOMPANIER) Did
you spend any money on transport for the
accompanying person (if applicable)?'.
|yes|
b) How much on the way here?
R
c) How much on way home?
R.
|no |
(ifyes follow filter b)
|no|
(ifyes follow filter b)
|no|
\dk\ (ifyes follow filter b)
|
COST OF WORK MISSED - FOR ALL;
TO THE USER:
Bl 4a)
If you hadn’t had this session now, would you
normally have worked and earned money?
|yes|
b) How much money would you have
earned in the time spent using this service?
R.
TO ACCOMPANYING PERSON/PEOPLE (IF APPLICABLE):
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B15)
If you hadn’t had this session today,
what would you have been doing?
Bl 6a)
Would you have earned money?
|yes|
b) How much money would you
have earned in the time spent
using the service?
R.
|no|
|dk|
(ifyes follow filter b)
|yes|
|no |
|dk|
(ifyes follow filter b)
|yes|
|no|
|dk|
(ifno follow filter b)
|yes|
|no|
|dk|
TOTAL EARNINGS LOST
R.
GRAND TOTAL
R
Section C - STAFF ATTITUDES
Cl)
C2)
C3a)
Who/which worker(s) did you see today? (nameY
What did (name
worker) do today?:
Did the worker explain what
he/she was doing in the session?:
—>b) What did he/she tell you?
C4a)
write:
write.
'Nere. you able to say all
thatyow wanted to say today?:
ifno^r
b) Why was this?:
C5)
Did you feel that the worker
listened toyow today?:
write:
Section D -RANGE OF SERVICES USED
DI)
How long have you been using
this (name organisation)?:
J[ years |
D2)
How many times have you had
|_| once
contact with the (name organisation) tick one only
| | 4 or less
in the last month (including this time)?:
|_| more than 4 times
D3)
Where did these [name number]
contacts take place?
(use probes)
I
I months
a) home
b) at centre in community
c) at (name organisation's centre
d) other (where?)
| L
TOTAL |
D4a)
Has (name organisation) been of use to you?:
|yes|
|no|
|dk|
L
(ifyes followfilter b)
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What are the two most important ways in which
(name organisation) has been of use to you? (NOTE):
b)
NOTE: do not offer
suggestions as probes
bi)
bii)
D5)
READ : If you think of your experience before you had contact with (name organisation), how does the
quality of your / (name userfs life NOW compare with THEN:
now as it was then
Is the quality of your life:
a) THE SAME
now than it was then
b) WORSE
now than it was then
c) BETTER
READ ALL:
d) (don’t know]
Section E - EDUCATION OF SERVICE USER
NB/SECTIONS E AND F FOCUS ON THE USER ONL Y
Ela)
Have you/name user ever attended school?:
|yes|
|no|
b) Do you/name user attend school now?
|yes|
|no|
(ifyes follow filter b;
if no go to Q.E.2 below)
|NA|
c) What is the highest grade class \ha\.you/user reached? (circle one only)-.
HI
I2|
I3I
I4|
I5|
I6|
|7|
I8|
|9|
|10| |higher|
|NA|
—>
d) What type of school do/did you/user attend? (tick for primary and/or secondary as
appropriate):
PRIMARY SCHOOL
SECONDARY SCHOOL
tick one only for
for primary and
one only for secondary
as appropriate
| | special school
| | mainstream school
| \other (what?)
|NA|
| special school
| | mainstream school
| \other (what?)
|NA|
e) Has (name organisation) helped
you/user in any way with schooling?:
E2a) Haveyou/user ever had any help with literacy?
b) Has (name organisation) helped
you/user in any way with literacy?:
|yes|
|no|
|NA|
|yes|
[no |
|NA|
|yes|
|no|
|NA|
|yes|
|no|
(ifyes follow filter b; ifno
go to Q.F2)
|yes|
|no|
|NA|
|no|
1^1
(yes follo-w filter b)
Section F - TRAINING AND EMPLOYMENT
Fl) EMPLOYMENT OF SERVICE USER
Fla)
you/user work to earn money?:
b) What work
you/user do?:
c) Is this work only for disabled people?:
d) Is this workplace only for disabled people?:
e) How
|yes|
you/user get this work?:
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f) Did (name organisation) assist you/user
in any way in getting this work?:
|yes|
|no|
1^1
Do/have you/user ever received training to do work?:
|yes|
|no|
b) Are you/user training to do work now?
|yes|
|no|
(ifyes follow filter b;
if no go to Q.F3 below)
\NA\
|yes|
|no|
I NA |
f) Is/was the training at a place only for disabled people?: |yes|
|no|
1^1
g) Did (name organisation) assist you
in any way in getting this training?:
|no|
1^1
F2) TRAINING OF SERVICE USER
F2a)
c) What work are/were you/user training to do?
d) Where do/did you/user do this training?:
e) Is/was this training only for disabled people?:
|yes|
FOR ALL F3) What work would you/user like to do?:
Section G - CONVERGENCE
READ: I now want to ask you (name individual) about any other services and organisations that you/(user's name)
have used in relation to your difficulty in (give appropriate functional
description).
(nb/ read the question for each of
IF YES the four categories in turn and
c) Did (name organisation)
follow questions a, b, c, and d.)
assist you in using this?;
a) y/n
b) What?:
Circle one only
(write)
|yes| |no|
|yes|
|yes|
|yes|
|no|
|no|
|no|
Have you used any other
EDUCATION related
services/organisations to help
with this difficulty?
|yes| |no|
|yes|
|yes|
|no|
|no|
G3) Have you used any other
EMPLOYMENT related
services/organisations to help
with this difficulty?
|yes| |no|
|yes|
|yes|
|no|
|no|
G1) Have you used any other
MEDICAL rehabilitation
services/organisations
to help with this difficulty?
G2)
G4) Have you used any other
|yes| |no |
WELFARE related services/
organisations to help with this difficulty?
|no|
|no|
Section H - PARTICIPATION
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NOTE Ask all questions in this section about the service user and the accompanying person in turn, when
appropriate:
Hl)
SERVICE USER:
Apart from using the services provided by
(name organisation), are you involved in
any other way with the organisation?
|yes|
|no|
(ifyes follow filter below)
|yes|
|no|
(ifyes follow filter below)
-+b) How?
H2)
ACCOMPANIER (IF APPLICABLE)
Apart from using the services provided by
(name organisation), are you involved in
any other way with the organisation?
-^b) How?
H3)
SERVICE USER:
a) Are you a member of any groups within the organisation?:
(ifyes follow filter b)
|yes| |no |
-+ifyes b) Whatgroup?:
->//no - c) Do you know of any such groups?:
[yes |
|wo |
| AC41 (ifyes follow filter d)
->ifyes - d) Why don’t you belong to this/these group(s):
d)
H4)
ACCOMPANIER (IFAPPLICABLE)
a) Are you a member of any groups within the organisation?:
[yes] \no |
(ifyes follow filter b)
[yes |
|7W1| (ifyes follow filter d)
-+ifyes - b) What group?:
-^if no - c) Do you know of any such groups?:
|no |
-+ifyes - d) Why don’t you belong to this/these group(s):
d)
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APPENDIX 5:
EVALUATION FOCUS GROUP DISCUSSION PROTOCOLS
FGD protocol for persons with disabilities and family members (service users)
This protocol was adapted according to whether it was used with groups of persons with disabilities, or with
family members. The core issues remained the same.
' )
4a)
1)
SERVICES AND SERVICE USE
a)
Overview of the service
What services and activities do you use?
How long have you been connected with the organisation?
What other things are available at the organisation that you don’t use (list all)
What does the organisation do best? What does it do least well?
Where do the services that you use take place?
What is good about this/bad about this?
Where would services best be provided?
Do you think that you will always belong to/ use the organisation? Probe why?/not?
What are the staff like in the organisation?
What is the role of staff?
How do they treat you? How do they make you feel?
What are the best things? What are the least good things?
What kind of people make the best staff in an organisation like this?
What kind of people make less good staff?
What are the important features of both?
Is there a difference in the way that services are provided between staff who are persons with
disabilities, the relatives of persons with disabilities, and those who have no such link?
How do the organisation, staff, and the services make you feel?
b)
Daily service use
Participants to describe experience of using the organisation’s service on a normal day
What are the major features, and activities through the day other activities, child care for other
children, getting ready, transport, waiting, activities etc, transport home
What are the costs of using services and activities organised by the organisation?
money costs (direct costs), other costs (offer probes of: time, effort, what else would you have
been doing)
c)
Coverage and convergence
What kind of people use the organisation? What kind of people do not?
Do you know people who could/should but don’t use the organisation?
Discuss the reasons for use and non-use (think of barriers to use - why do some people not use
the organisation
What other services for medical rehabilitation, welfare, education, training and employment do/have the
participants used or visited.
Why did they use others? Do they still use this? What do they get? How are they different to the
organisation? How do these services compare with the organisation? Why do some people
choose to use other services instead?
How does the organisation compare with other services?
Do any others do anything better than the organisation?
e)
Participation
Apart from service use, in what other ways do service users and their families take part in the organisation?
Do the users of the organisation have a role in the way that the organisation runs? What is this
role?
Do persons with disabilities and their families have any responsibility for the running of activities by
the organisation?
Who has the most say: persons with disabilities or their parents?
Who does decide the policy and objectives of the organisation?
Should the users of such an organisation have a role in this?
Are there any groups for users and their families to join?
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List groups and enter on cards.
Who has any experience of these? What is the motivation? Who does not join? Why? etc etc.
Who generally does this/ who does not do this? Why?
Are there different roles for different users/user’s families? What is the difference? Who
does/should do what?
Where do the organisation get the money from which pays for the services?
f)
Advocacy, self advocacy and disability as a socio-political issue
What does ‘rights for persons with disabilities’ mean?
Rights for what?
Have Rights changed in recent times? How have they changed? How could they change in the
future? How might this happen? What can the organisation do about this? Are there factors which
unify persons with disabilities. Are there factors which divide them?
What does the organisation mean for persons with disabilities in terms of their rights?
Does the organisation encourage or help persons with disabilities them to attain rights? How? Do
persons with disabilities come together at the organisation? is this important, does organisation do
anything about this, are groups encouraged, what is missing in groups. Do you know about the
Disability Bill? What do you know? Are there any groups of persons with disabilities in the
organisation? Do they discuss rights etc?
2)
LIFE IN THE COMMUNITY
What is life like for persons with disabilities in your community?
What are the expectations in life of persons with disabilities in your community?
What are the most important factors in the quality of life of persons with disabilities?
What are the important factors in the quality of life of non-persons with disabilities? Are there any
similarities? What are the differences?
What are the barriers to improved quality of life for persons with disabilities in your community?
What might make life better for persons with disabilities (apart from money)
Are there differences in the quality of life in urban communities with those in rural communities?
How do they differ? What causes these differences?
What effects do the rest of the urban community have on persons with disabilities?
How do they treat persons with disabilities? How do you feel about this? Does the way people
treat persons with disabilities vary? How does it vary? What support is available within the
community?
What could be changed in the community to make life easier
What is the most important thing?
3)
QUALITY OF LIFE, AND THE ORGANISATION
What the organisation has meant for you/your child; you (parent); the rest of the family (as applicable)
What has the organisation meant for the life of your family? Give areas - social, physical,
economic,
Life before and after contact with the organisation, quality of life, how you feel about yourself,
confidence, self perception, life expectations
What were your/their expectations in life before contact with the organisation? ...and now? And
what are your/their future aspirations?
What has the organisation meant for the quality of life of the persons with disabilities who use its services?
Has the organisation meant anything for the quality of life of persons with disabilities in your
community?
Do non-persons with disabilities in you community know of the existence of the organisation?
Do they know anything about the work of the organisation?
What kind of actions/messages do the people receive?
What does this do? Does the contact change them in any way?
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4b)
FGD protocol staff of partner organisations
1)
SERVICE PROVISION AND SERVICE DELIVERY
What are the aims of the organisation?
What is the organisation’s role in lives of disabled people?
What is the underlying motivation behind the organisation and the services that it offers? (probe empowerment, development, rights)
What are the best aspects of the organisation? What does it do best?
What are the least good aspects of the organisation? What does it do least well
What did the organisation do at the beginning? What does the organisation do now? What will it
do in the future? What does this depend on?
Are there things that the organisation should not get into?
Are there things that the organisation should stop doing at any point?
What aspects of the lives of disabled people in this city requires the most urgent attention?
a)
Coverage
Does the organisation offer a service to everyone in [the city] who needs it?
Who is served? Who is not served?
List those who are/ are not. What are the differences? List determinants of each. Could the
coverage (the numbers of people served) be increased? How could this be achieved? Should the
coverage be increased? Where is the limit?
Is the organisation used by people living in the urban slums?
If not why not? Do you think that the organisation should provide services for those in urban
slums? Discuss. Is there any future commitment for extending the organisation’s services to
serve more low income disabled people?
b)
Service approach
What is the relationship between the organisation and the Government of India?
What is the role of the Government in the organisation? Does the Government have a
responsibility in the services provided by the organisation?
Where is the best place to deliver the services that the organisation provides?
What are the advantages of home and centre based work? Which works best?
What do you think about he move from centre to community services that some are
embracing? What are the ideas behind it?
c)
Staff attitudes, participation, advocacy
What drew you to this work in the first place?
Are staff who are disabled people different in their approach to those who are non-disabled?
Are staff with disabled relatives different to staff without?
What is the role of disabled people in the organisation?
How did the disabled people in the staff come to work at the organisation
What were they doing before they came to the organisation? What do they do at the organisation?
What has the organisation done for them?
What does participation mean? ... what does it mean at the organisation?
...participation in the decision making process? Any future developments?
Who makes the policy decisions at the organisation? What is the role of staff in decision making
and policy formulation? Have you had any say in policy?
Where does the organisation get the funds to pay for its services?
How much is the annual budget? Will these funds always be available?
What are the barriers to greater participation of disabled people?
What does ‘Rights for disabled people’ mean? (rights to what?)
Who should work for the rights of disabled people?
What does ‘advocacy mean?
What does the organisation do about this? What should it do?
Does the organisation encourage the persons with disabilities who use the service to meet together?
And without the presence of members of staff or their parents?
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APPENDIX 6:
TRACER STUDY METHOD
The method developed for the evaluation of medical rehabilitation in the UCBR project is a based on the
tracer approach and was developed by an interdisciplinary team from India and the UK with expertise in
CBR and social research.
1.1.
Selecting people and the ‘tracer conditions’ for study
The functional difficulties used as indicators are listed in table A1. ‘Moving difficulty’ was divided into two
diagnostic categories since ‘rehabilitation’ in the two conditions is not comparable.
The selected tracer conditions.
Table_______
A1:
1. Moving difficulty - cerebral palsy
2. Moving difficulty - polio
3. Seeing difficulty
4. Learning difficulty
5. Communication difficulty
6. Epilepsy
In each organisation, four persons with disabilities with each selected tracer condition using the service
were selected to assess medical rehabilitation quality where possible. These ideally included a man; a
woman; a boy; and a girl (both under 14 years). Thus, the maximum number of persons with disabilities
selected was 24, assuming that all six tracer conditions were represented by the users of the organisation.
All of those selected came from low income households. They were identified from user records, from data
from a questionnaire of organisation users, and from information from organisation staff. At the point of
service use they were asked if they would permit their service session to be observed by the fieldworker,
and would respond to subsequent questions.
1.2
The tracer methods
Methods were developed with which to assess different aspects of medical rehabilitation;
A. Management of rehabilitation using goals and concordance of goals
B. Quality of interpersonal process
C. Daily living skills were being addressed where needed
D. Appropriate education or workplan
E. Impairment specific minimum technical standards of service provision.
The methods directly addressing service quality focused on the observation of a service use ‘session’ that
took place on a single day. This information was complemented with available data from records and from
interviewing the disabled person.
Table A2:______ The methods used to make up the ‘Tracer File’ for each individual.
A Management And Goals (‘Structure’)____________________
single method for all users
Questions to service provider relating to management goals.
Examination of records for existence and assessment of single method for all users
management goals.___________________________________
Summary and comparison of i) service provider’s and service single method for all users
user’s goals, and ii) service provider’s and recorded goals.
B Interpersonal Process
Observation of service session based on explicit standards.
single method for all users
£ Daily living skills____________________________________ single method for all users
D Education or workplan________________________________ single method for all users
Minimum Technical standards
E
Based on minimum standards for each condition, and the most specific standards for each
appropriate approach for each (observation, questions to tracer condition
service provider; to user; to carer)._______________________
Additional Information
Exit interview with user - including service use, socio-economic single method for all users
details, daily living skills, users’ own goals.
In-Depth interview with user - qualitative information on quality single method for all users
of life, life experience, social integration, experience of service
over time etc.
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Forms outlining each method and recording data were collected together in a ‘tracer file’ and completed
with people representing the tracer conditions. Each complete file gives a detailed and in-depth description
of the disabled person and the quality of his/her service use. The method was piloted with persons with
disabilities who use a community disability service in West Bengal. A tracer file was completed for
individuals from all of the tracer groups. In the evaluation proper, the fieldworker applied the methods
alone. The organisations under evaluation were not given access to the contents of the tracer files before
evaluation to avoid the risk of the organisations moulding service delivery sessions around these minimum
standards.
A
Management - rehabilitation goals
With reference to the use of goals for management of rehabilitation, quality was defined in three
dimensions:
1. Goals should be functional.
2. Goals should be set through consultation between the service provider and the disabled person, and
when appropriate the parents or other carer.
3. Goals and the intended time scale should be recorded for future reference.
For each tracer file, the fieldworker recorded three types of goal (if they were available).
A. Service provider’s goals: After the observation of the service interaction ‘session’, the service provider
was asked to describe any goals that she/he had for that service user.
B. Recorded goals: Secondly, if user records were available, they were examined and any written goals
recorded.
C. User’s goals: In the exit interview, the disabled person or their carer was asked if they had any
rehabilitation goals for the next six months. They were also asked if they knew of any goals that the
service organisation had for their development. These were also recorded.
In each category, up to three goals were recorded. The service provider’s stated and recorded goals were
examined by a CBR consultant to assess whether they were functional in light of the rest of the information.
In a service in which rehabilitation is framed around functional goals, and these are a) planned through
consultation between the disabled person and the service provider and b) recorded for future reference,
goals from these three sources would be expected to converge. Convergence should be expected if goals
are to be of any use in the appropriate management of rehabilitation. For each tracer file, the UCBR team
compared goals A with goals B; and goals A with goals C and, after discussion, decided if there was any
convergence. As with the technical minimum standards, a pass or fail approach was taken. Any
convergence was an indicator of good practice. This method is developed from Sebeh (1996)14.
B
Interpersonal quality
A list of ‘good practices’ was developed on which the quality of interpersonal processes between service
providers and service users in community based disability services could be assessed. The list was broken
down into four parts; i) management; ii) respect; iii) communication and listening; and iv) transfer of skills.
All four involved assessments made by the fieldworker while observing the session. For the latter three,
observations were supplemented with data drawn from an exit interview giving the user’s perspective of the
interpersonal aspects of the session.
Unlike the pass: fail assessment of technical standards, the assessment of interpersonal quality was scored
on a continuum, with one mark given for each ‘good practice’ recorded, and these added together. The
outcome score for this section was derived by dividing this score by the total possible score. Items that
were deemed ‘not applicable’ for that interaction did not negatively affect the outcome score. Again, the
fieldworker was advised to use the ‘not applicable’ option judiciously.
C
Daily Living skills
Service providers were asked if they were addressing any needs for daily living skills. Their responses were
recorded and checked with responses to a similar question on needs and activities to the persons with
disabilities and their families (see exit interview below).
14 Sebeh A.G. (1996) Evaluation of CBR for Disabled Children in urban slums in Egypt. Unpublished PhD
thesis, University of London.
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D
Appropriate Education or work plan
Service providers, persons with disabilities and their families were asked whether any plan for appropriate
plan for learning or earning money was in place.
E Assessing technical quality by minimum standards
The methods for assessment of technical quality is based around the minimum technical standards. For
each tracer condition, a list of common rehabilitation inputs was drawn up. The importance of each one in
terms of functional rehabilitation, and in the context of low income urban communities in India, was
considered. Those that were not functional, or were presently inappropriate in low income communities in
India were discarded. For example, referral to a specialist neurologist on diagnosis of epilepsy is the norm
in the UK, but in India this is unrealisable for poor people. After discussion, and with independent inputs
from persons with disabilities and experts on rehabilitation for specific impairments, a list of minimum
technical standards was drawn up for each condition. Some of those chosen may not be recognised by a
general audience as strictly ‘medical’ rehabilitation issues, but it was felt that these should be included as
essential minimum standards in holistic, functional, and appropriate rehabilitation in urban India. For
example, the minimum standards for people with learning difficulties relate to daily living skills. Different
minimum standards were drawn up for children and adults.
A means of assessing each of the minimum standards was developed. This usually involved observation of
a service interaction, and questions to user and provider, but where this was not appropriate, other methods
including examination of records and material resources were used. For each tracer condition, a printed
form outlined the minimum standards and the methods by which to assess them. For each standard, the
fieldworker indicated whether or not it had been passed, and made detailed notes to support this
assessment.
Evaluation using the minimum technical standards is scored on an ‘all or nothing’ basis. Service sessions
either satisfy all of the appropriate minimum standards and pass on the basis of technical quality, or fail
(whether one, or all of the minimum standards are not met). If any standard is deemed not to be applicable
for that individual, it is not applied and has no bearing on outcome. For example, a mobile individual with
cerebral palsy might not require advice on sitting to enhance function. This standard would be left out.
This was left up to the judgement of the fieldworker, but notes were taken to explain the decision. The
fieldworker discussed each disabled person’s file with the UCBR team and the session assessed as having
achieved or failed the minimum technical standards. For an organisation, the outcomes can be presented
in terms of ‘achieved minimum standards for 12 users, but failed for 8’, or ‘achieved minimum standards for
all users with moving difficulties, but failed for seeing difficulty’.
The only adaptation to the method made after application has been the presentation of the results of
technical quality of services for cerebral palsy, where the recording of contractures was found to be
unpracticed throughout the organisations evaluated. This resulted in an artificially low score for those
services focusing on the needs of this group. Therefore scores have been presented with and without this
minimum standard included.
A
1.3
Additional information
Exit interview: The quality assessment tools applied during the service session were followed by an exit
interview with the service user. This schedule addressed the user’s inputs in the evaluation of quality. The
schedule recorded:
1. The user’s rehabilitation needs for four daily living skills (feeding, washing, dressing and toiletting - if
applicable).
2. The user’s educational and/or workplan
3. The user’s rehabilitation goals
4. The user’s perception of the quality of the interpersonal process
This data was added to the quality assessment data where appropriate. The schedule also collected
background socio-economic data about the disabled person and his/her household.
In-Depth interview: At a later date, an in-depth interview was conducted by the same fieldworker with the
disabled person (and accompanier where necessary). It collected detailed qualitative information on the
user’s service use, wider perceptions of the service organisation, and the user’s quality of life.
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