Basic Needs India's Community Based Mental Health and Development Program - an evolution over one and a half decades
Item
- Title
- Basic Needs India's Community Based Mental Health and Development Program - an evolution over one and a half decades
- Creator
- Mani Kalliath
- Date
- 2015
- extracted text
-
Basic Needs India's Community Based Mental Health and Development Program - an
evolution over one and a half decades
A background paper of MFC annual meet Feb.2015, Pune.
‘Mani Kalliath, Vandana Bedi, Guru Raghavendra
I
The Background
In the late 90s the only care provisioned for the poor mentally ill persons in the rural areas of
the country were either through 'District Hospital psychiatry' or through District Mental Health
Program (DMHP) where such program was available. Both these programs were not delivering
effectively with large numbers of districts not having government psychiatrist post filled or the
DMHP supposedly expanded to 25% of districts by then, mostly in paper. Even in those districts
psychiatrists were available, they were confined to the district head quarters (which could be a
travel of over 100 kms for many rural mentally ill persons). The poor persons with mental illness
(PWMI) and their family carers, faced the reality of only care option
being informal and
traditional care associated with certain religious centres. The voluntary sector development
agencies (NGOs) who were involved in Community Based Rehabilitation (CBR) of disabled
persons or in Community Health did not enter into mental illness issues (though it was
confronting them in the field situation). This was considered a complicated medical problem
requiring specialized psychiatric intervention and hence beyond their purview.
The Disability Act 1995 defined severe and chronic mental illness as one of the 8 Disabilities. The
pioneers involved in promoting CBR were faced with the challenge that, community based
rehabilitation interventions were conspicuous by the absence of mental illness rehabilitation.
Around the same period there developed an enhanced focus of interest worldwide in Mental
Illness when WHO chose this theme for its World Health Report 2001 (and subsequently
launched Global Action Program on Mental health). Sensing the potential opportunity for
promoting CBR in mental illness, a farsighted social entrepreneur in the rehabilitation sector
Mr. Chris Underhill, mobilized resources for a 'start up program' in India. Late Mr. D.M. Naidu a
pioneer in CBR, teamed up with his long time associate to initiate a non institutional approach
to mental illness rehabilitation. He spent a year visiting and studying the then existing
community extension efforts towards mental illness in the country, as also interacting with the
various stakeholders of this issue. The work started in the year 2000 and 'Basic Needs India
Trust' was registered in the year 2001 in order to systematize and structure this effort (in the
subsequent sections of this note, instead of 'Basic needs India Trust' the words 'promoter
organisation' will be used). Several pioneers in the CBR and Development sector were involved
as Trustees in this initiative and subsequently 'Basic Needs U.K Trust' was set up.
1 Mani Kalliath Executive Director BNI, is the lead author, followed by co-authors - Ms. Vandana Bedi
Trustee BNI and Mr. Guru Raghavendra Senior Staff Member BNI.
At7<:
Consultations with relevant stakeholders from the local community (such as affected persons,
their primary carers, local supporters as well as interested local community based organisations
'CBOs') brought to light and articulation the'felt needs'. These consultations contributed to
the development of a conceptual frame for a community based approach. The large list of
needs identified, were subsequently strategized into intervention modules2. The initial
conceptual frame was also influenced by the learnings in CBR sector, particularly regarding the
importance of realizing productivity by the affected individual. Economic productivity (earning
money) or at the least contributing to the family chores, was recognized as an important
contributor to'self respect and self image'of the affected individual.
II
The evolution of the intervention modules of Community Based Mental Health and
Development (CMHD)
The excitement of the early stages of the development of this community based approach, is
captured in the early writings of the key promoter which is extracted in this section3
'A series of fascinating consultations took place in the field with mentally ill people, their caregivers and
staff of CBOs. Animation is the key word in consultation and it is drawing from people and echoing their
voices. The participants were divided into three groups i.e. people with mental illness, carers and staff of
CBO and were asked to discuss and depict the world of people with mental illness. Carers expressed their
apprehensions about mentally ill people discussing about themselves. When it came for presentations, the
presentation of mentally ill people was nothing but truth and other presentations were colored by their
own misconceptions and intentions. This was a revelation This exercise was followed by ’needs' and 'what
next’ The ’voices’ of the participants were the potential seeds initiating the programme. It dispelled the
myths and laid a solid foundation for inclusion of people with mental illness into the development process.4
The need for both mentally ill and carers to meet often on a common flat form was conspicuous and they
all wanted access to treatment, enhanced family incomes, social integration, training and other capacity
building. All the stakeholders sitting in a circle expressed their determination to take the cause further.
This exercise has been followed with all the partners. At the end of the day debriefing sessions contributed
to the depths of understandings.
'After the initial field consultations ..consultations were held with the NGO project heads and staff to give
meaning to bottom up approach... The exercise was guided by the field consultations' 'needs' and 'what
next’. The needs list was classified broadly into - appropriate treatment at local level and follow-up,
economic independence and social integration. Training and skill development was (expressed) from the
staff. To make these happen heads of the organisation expressed (need for) strong administration and
management support. BasicNeeds said that when such an important work for the most needy peoplef is
2 Process documents from exploratory meetings conducted by BasicNeeds with People with Mental Health Problems,
their carers, and supporting Community Based Organisations By Sonykuty George, Oct 2000
3 Extract from the document of 3rd year of start up work titled 'Baseline Document March 2003, Naidu
D.M'. The various older internal documents referred to, are from the period 2000 to 2003 March.
a Process documents of Mitra Jyothi, SACRED and Narendra Foundation
being undertaken), the whole process and the learning need to be recorded in the required fashion. Thus
the model emerged and each of the above become the modules
The work under each module was
discussed and agreed upon. Further discussions defined the roles and responsibilities of the participants to
implement the model. This model has been considered good and has been implemented by all other
partners who joined later. To implement effectively this model a MoU has been signed with each partner
incorporating the expected outcomes under each module.'
The implementation structure developed for the partnership were as follows:
At the promoter organization level a Program Manager responsible for certain number
of partner organisations located in particular states.
Each of the partner NGO had a staff person designated for the mental health work the
Mental Health Coordinator
Reporting to the Mental Health Coordinator there were field staff who were looking into
the cross disability program of the NGO, which now included the mental illness
rehabilitation
BNI approach/model - at a glance
The model consists of five modules based on the needs and expectations expressed by different
Community Mental Health: Brings easy to access and cost effective treatment to people
especially from the government system
. ...-------------------
Capacity Building: Sensitizes and develops the ability of health personnel, communities, family
members and persons with mental illness themselves, to deliver comprehensive support to the
lives of persons with mental illness.
Sustainable Livelihood: Enables persons with mental illness and their family members to get
involved in economically viable activities, including returning to their earlier occupation.
Research, policy and advocacy: Involves generating data and evidences from programmes for
influencing change in policies and procedures and for advocacy work.
Administration & Management: Develops systems in the organization to ensure the quality of
programmes and optimum use of resources.
These components aim to strengthen persons with mental illness and their families to be self
reliant, free of stigma and to facilitate access to public provisioning systems, namely health care
and social security entitlements.
The Community Mental Health and Development (CMHD) Model in detail
At the beginning of commencement of the program in each partner location the process of
community consultation earlier mentioned is repeated. Out of this activity begins the work plan
with each of the PWMIs and their family carers. The ongoing consultation process ensures that
the primary stakeholders participation is strengthened and the roles of the different groups are
made mutually clear (this set the tone for the long term relationships and guards against
dependency relationship setting in). The following section is paraphrased from or draws upon
heavily from 'Baseline Document March 2003, Naidu D.M'
i)
Community mental health
The coordinators and field staff of the partner NGOs have been trained in identifying, screening,
referring to treatment and very importantly following up regular treatment and addressing side
effects. These barefoot workers have been the turning point in giving meaning to the
community mental health module.
The diagnosis and treatment varies from place to place. The approaches include (camps
organized by Government agencies), camps organized by partners, people going to district
hospitals, mental health institutes, and private psychiatrists? Some access alternative
treatments like homeopathy and ayurveda. Majority of those who are regular get stabilized.
Very few relapses are noticed. People with Severe Mental Illness are highly symptomatic and
their behavior is seen as major problem and family members give up hopes. When they see
changes for the better in fairly short time, they find it dramatic and magical. Concerns about
dropouts, drug regime and other physical ailments associated with mental illness are discussed
with family carers.
ii)
Sustainable livelihoods
5
Partners reports (CMH module)
H
'One of the main reasons that people find it hard to accept mentally ill people as equal members
of their communities is that they do not see them as capable of contributing to the household or
the community. In poor rural communities the 'value' attached to an ability to earn income is
great and often is the defining factor for a person's standing within the family'.6
The above factor ensured that after stabilisation, consultations take place both with the
affected group and the family members regarding some gainful occupation. After taking all
illness related issues into consideration, the first preference would be given to 'going back to the
previous work'. Necessary preparation and training is given to all concerned i.e. mentally ill
person, caregiver and field wc rker. In some case where previous work does not suit in further
stabilization, a new enterprise is developed. Assessing the skills, market, financial viability and
coping abilities are necessary components of this venture.
In this module family is considered as one unit and there fore the entire family’s needs and their
current income patterns help planning the income generation project. Another important
feature of this module is people joining the self-help groups, micro credit groups and accessing
loans as members. People also access money from government schemes and financial
institutions.
Lakshmana, a person with mental illness from SACRED project area, said that he was denied
opportunities to learn his family trade of weaving and openly confronted his mother in the very
first consultation meeting. He emotionally told that 'no body eats gold; all eat salted food' when
an issue of loss surfaced.78The same Lakshmana today is weaving, earning around Rs.2,000s a
month and is married. This story tells the process of interventions and completing the circle i.e.
treatment, income, social integration and the same status like that of his brothers in the family.
This one story is self-explanatory.
iii)
Capacity building
Capacity building has clear focus on the different levels, i.e. person with mental illness, family
members, community, organization involved and others.
The techniques used are animation and facilitation either in a meeting or in workshop. It has
always been drawing from people and not preachy. Therefore, the building of capabilities at all
levels takes place in a planned way, meaning through home visits, group meetings, staff
meetings, workshops for caregivers, staff, local communities, review meetings, plans and
budgets, etc. Awareness building on existing laws, government schemes and entitlements and
preparing them to lobby for their rights and networking among partners is an important aspect
of capacity building. Partners are involved in annual reviews and preparation of plans and
budgets.
6 Anil K Patil & Nicholas Colloff - sustainable livelihoods paper
7 Process document
8 The figure represents the earning in the year 2003
Contents of the various Capacity Building interventions
Partner staff
PWMI and families
DPO's & Community
Sensitizing local
Government personnel
-What is mental health
-What is mental health
-What is mental health
- Needs of PWMI
-Stress in daily life and
mgmt
-Stress in daily life and
mgmt
-Stress in daily life and
mgmt
- Gaps in health care
services
- illness, treatment,
managing relapse, and
side effects
- illness, treatment,
managing relapse, and
side effects
- illness, treatment,
managing relapse, and
side effects
- Community based
rehabilitation
-Basic counseling skills
- Facilitating community
consultation
-support groups,
- support groups,
-Government programs
and entiltements
-Government programs
and entitlements
- assessing needs of
PWMI and families,
- Messages for
awareness programs
- Role of DPO's and
community in
supporting PWMI,
- Essential
documentation
-networking and
advocacy
- Building carer groups
and DPOs
- Government programs
and entiltements
- Networking and
advocacy
- PWMI in productive
activities, vocational
training and self
employment programs
- PWMI in productive
activities, vocational
training and self
employment programs
Evaluators from Big Lottery Fund recorded, 'During the visit to - we were able to see a street
theatre performance raising awareness on major mental health issues. The performance largely
engaged the community, and it was encouraging to see members of the audience approaching
staff with questions as a result of the play. However, some sections appeared to 'preach' to the
audience and lost their attention. This was noted by BNI staff and was taken up with the project
manager as a result. This emphasises the importance of BNI staff observing project staff
undertaking activities during visits on a regular basis. - The need to take a critical look at
awareness materials and cultural programmes was noted as a key issue at the end of the year
partner review meeting.' Taken from Basic Needs India - report final by Big Lottery Fund 2005
1
iv)
Research, Policy Advocacy
Training is imparted to field staff to gather data and to record the same in a manner that helps
the worker, organization and to disseminate such information for the good of the users of
service. The outcome of the training was the format for individual files.9 Jointly with partners a
format has been devised for sending quarterly reports. It is a very comprehensive format that
gives qualitative and quantitative information regularly. The partners feel the advantage of this
module to track changes in each individual case.
Life story writing is an intense process by which mentally ill people begin to narrate their
experiences, situation in their own 'Voice'.10 Life stories have been followed up regularly. Life
stories have been edited and used for advocacy.
'During meetings with panchayat members and community leaders it was clear that mental
health issues were being discussed at panchayat and Gram Sabha meetings. The individuals that
we met were clearly engaged in the work of the project, and had a number of ideas about how
to undertake further awareness raising and improve service delivery in the community. Project
staff recognise that they need to engage more with these influential members of the community,
utilising them more strategically in advocacy work1 Taken from Basic Needs India - report final
by Big Lottery Fund 2005
The analysed data are being used by the partners in advocacy with the district administration for
better provisioning of services and policy changes where possible. A powerful example is the
achievement of a partner with the support of a disability advocacy resource in AP. Through
their efforts the policy for participation of disabled persons including PWMIs in the MNREGA
program was expanded to accommodate their disability. This opened the gates for stabilized
PWMI to gain regular wage income, upto 150 days a year.
v)
Management & Administration
The project managers (team of the promoter organization ) closely work with the partners right
from the preparation of plans and budgets through the mental health coordinator. The
management responsibilities include arranging required training for all the modules, monitoring
the progress, getting quarterly reports and financial statements and analysing them. Conducting
annual reviews and evaluations and taking mid course corrections, supervising and ensuring
proper implementation of research module, disseminating all the necessary information,
arranging visits with prior intimation, getting audited financial statement of annual accounts
form the important elements of management.
Ill
Rapid expansion of the CMHD approach through partnerships (the second phase
work)
Report on training
10 Shoba - Wide canvas
During the 'start up period ' of the initial 2-3 years, the promoter group was intensively engaged
with the affected groups and the 'primary NGO partners' and in the development and the
evolution of the CMHD model. This was facilitated by several positive factors : - Flexibility
offered by start up funding - relative geographic access to the initial 'primary partners' i.e.
within 4-5 hours by road - intense interest and involvement of the promoter team and trustees.
The outcomes were rewarding and affirming the relevance and usefulness of this
comprehensive approach.
This phase lead to the second phase, of rapid expansion of the CMHD approach, both through
expansion of locations of the existing partners and expansion of the numbers of partners. Two
types of partnership came into being - one termed 'primary partners' with whom the first phase
was launched, who were small organisations working in CBR - The other 'secondary partners'
with whom partnership developed in the 2nd phase were 'nodal NGOs' i.e. large NGOs who
were supporting several partner NGOs themselves. As a result the CMHD work got initiated in
pockets of 38 districts in 6 states (22 in the southern states and 16 in the states of Bihar and
Jharkhand).
A four year funding was successfully negotiated for the program to be implemented in 6 states.
The targets were identified and listed for the numbers of PWMIs (persons with mental illness) to
be identified and supported through the five modules. In keeping with the ‘sustainability
principle', the project had reducing funding for the year 3 and year 4 (50% funding for year 3
and 25% funding for the year 4). Along with the change in partnership profile, the role of the
promoter organization also changed. The engagement with the affected people, the immediate
responses made and the strategic directions taken were decided at the partner locations. The
promoter's role was supportive - routing timely resources, supporting in monitoring and
meeting of agreed targets, consolidating data for reporting as well as well as for analyzing trends
and technical support as needed.
The partnership programs' overall outputs and outcomes during this phase were large. The four
excerpts below which brings this out, are from the annual reports year 2004, year 2006, year
2005 external mid-term review report and year 2008 end term evaluation report of this phase:
The impact seen/experienced/voiced (annual report year 2004)
•
•
•
•
•
•
•
•
Early identification and access to treatment locally
Reunion offamilies where the couples got separated due to mental illness
Partner organizations have been invited by district authorities to be the NGO representative for
various committees
Association of care givers was formed in the project area, they are meeting regularly to discuss
mental health programme.
Marked increase in identification of women with mental illness
Women with mental illness an'ively participated in all the events organised on behalf of world
women's day and represent federations as executive members
Increase in self-esteem among people with mental illness.
People with mental illness are having confidence that they can raise their economic status.
An observation made {by International Grants Officer Big Lottery Fund during the mid term
review annual report 2005)
"The most impressive aspect of the project is its success in mainstreaming the issue of mental illness into
existing development organisations. This has enabled mental illness to be dealt with holistically,
addressing the three areas of concern identified by people with mental illness; treatment and stabilization
of their condition, income generation, and social integration
A number of partners have already met their targets for identification and treatment of people with
mental illness, even before the half way stage of the project. The project has been very successful in raising
awareness of mental illness in the community, and reducing stigma experienced by people with mental
illness. Community involvement in raising awareness and promoting the project has been strong. The
project has excellent links with government at all levels, and in some states has had great success in
lobbying for changes in policy and practice"
The outcomes include (annual report Year 2006):
•
Treatment and medicines available in 23 of the 38 districts
•
Medicines made available at block level hospitals in Karnataka
•
Partner organizations succeeded in activating the DMHP in Kanyakumari district in the South.
There was collaboration and activation in Dumka and Goddo districts in Jharkhand
General Practioners got trained in mental health issues in Karnataka and Andhra Pradesh
Prisoners with mental illness accessed treatment regularly in Hazaribogh Central Jail
Persons with mental illness and families got 90% concession in train and bus fares to attend
mental health comps in Jharkhand
Housing schemes were accessed by the homeless
75 people got work under the National Rural Employment Guarantee schemes
2680 people with mental illness have been integrated into self-help groups
1158 people were given loans by financial institutions, government schemes and BNI for their
livelihood
A few eligible people got identity cards
Understanding and support from the police and the judiciary
•
•
•
•
•
•
•
•
•
Extract from Executive Summary (Evaluation of Basic Needs India Community Mental Health
and Development Programme, March 2008, Maya Thomas* D.M. Naidu**)
'The most significant outcome of the BasicNeeds India programme is the establishment of the community
mental health programme for poor people from rural areas, who otherwise would not have been able to
access the needed treatment. The programme has been very successful in activating and building capacity
of the government health system and other local government institutions to respond to the needs.
Generating awareness in the rural communities that mental illness is treatable has significantly reduced
th" stigma and superstitions associated with this illness, leading to there is increased voluntary reporting,
identification and referrals by the community.
The second major outcome is the participation and inclusion of people with mental illness in their families
and communities. People with mental illness have had their self worth restored, are involved in productive
activities, and their human rights are protected. Alongside, their care givers' capacity and awareness is
raised.
The third significant outcome is the capacity of community level groups such as self help groups and
federations of people with disabilities to deal with the issue of mental health in the community, using a
rights based approach.
Another outcome is the internalisation of mental health and development policies and practice by the
NGOS and CBOs who are BosicNeeds partners, and their capacity to deal with this issue, which has led to
improved public profiles for these organisations'.
The community mental health programme promoted by BasicNeeds India through 6 partners in
southern India had covered 6448 people affected by mental illness till December 2007. The
attached table (in annexure 2) gives details of the coverage and outcomes11.
An Urban intervention
During this period an urban CMHD initiative was started in the Bangalore city through
partnership, which eventually covered a population of 2 lakhs slum dwellers. About 1,000
PWMIs and families were enrolled into this program, majority of whom made significant
improvements and recovery. Two ‘work therapy' units were initiated in the slum areas which
were helpful for very chronic PWMIs. Earning a small income for the first time (in their recent
memory) did much to improve their self image and also families perception of them. A
counseling / therapy centre was initiated and the 'more difficult families' were referred
(supported by City Corporation, a CSR group, and a Counseling resource group). Remarkable
changes were noticed in those limited PWMIs and carers, who attended a minimum of 3
sessions. An important change observed related to 'insight development' by several chronic
PWMIs and hence they made lasting improvements in their relationship skills. Though an
important intervention, this could not be sustained as the intensive resource input required for
optimum outcomes could not be managed.
In the latter part of this program a federation of 'Carers, stabilized persons and supporters' was
formed. With the strong support of the state level cross disability federation KARO, they
succeeded in advocating and realizing access to medical care. Their sustained advocacy
resulted in the appointments of psychiatrists in the three district level hospitals in the city and
availability of psychiatric medications in these centres.. This program gave the opportunity for
the newer team members (of the promoter organization) to engage directly with the affected
groups as also to explore innovative interventions 12.
IV
Some Learnings from critical reflections of the experiences
11 See Annexure 2 for Table 1 coverage of the project upto December 2007.
12 Refer BNI publication 'Voices Uniting for Change', Sept. 2011
•
During the second (expansion) phase the data from the field showed two sets of
contradictory trends.
One was the continued attribution to medicines for the gains made, by the affected groups.
This was in contradiction to the fact that only one of the 5 CMHD intervention modules relates
to treatment. A field based research study was initiated on the 'roles of caregivers' in mental
illness rehabilitation1314
. The study brought out that family caregivers played multiple roles in
the total rehabilitation load and at great personal cost and sacrifice to themselves. However
they themselves as well as other stakeholders were undervaluing their contributions. There is
need to acknowledge this invaluable contribution institutionally by the program and at the
public policy level.
A second contradiction that emerged from the data sets related to the gender imbalance of the
program in the project areas of northern states as compared to the southern states (the ratio
of men and women in the project area varied from 90: 10 to 52:48). Another field based
research study was undertaken, while simultaneously steps for gender sensitization were
undertaken. The gender sensitization efforts were addressed at the partnership teams at all
levels as also in some refinements in the intervention strategies. The study brought out that the
factors of gender discrimination existing in the general society, were responsible for the gender
imbalance observed in the CMHD program”. The proactive steps undertaken, gradually helped
to change this situation especially in the northern states, where the situation was acute.
•
Effectively implemented CMHD has potential to educate the affected groups and their
community on the needs and rights for Ml as well as scope for Ml rehabilitation
approaches. This could help to raise community's demand for mental health services
and entitlements (these presently fall under the purview of Ministry of Health as well as
the Ministry of Social Justice and Empowerment). The DMHP Program in its present
form only achieves decentralization of psychiatric services (though a necessary step).
The DMHP program which is to be universalized to all the districts during the 12,h Plan period,
would be effectively complimented by this multi-sectoral and empowerment oriented approach
of CMHD.
•
In the southern states the partnership field programs have been followed up by the
promoter periodically after the end of the 2'1d phase (though there were no funding
relationship). Though several of the NGOs managed to integrate the Ml concerns into
their priority of focus, there were severe constraints for funds experienced by several
partners leading to re-allocation of the CMHD staff to their other programs and
decreased intensity of focus on this program. At the end of 3 years of 'non -funded
13 BNI publication 'Caregivers in Community Mental health - A Research Study', Sept 2008
14 Gender Perceptions of Families and Communities, in Community Mental health and Development
Programs, a report -BNI, NBJK, 2012
activity' a consolidation study was carried out in 2011 to understand the ground
situation in the southern states. The data collected brought out some impressive
achievements especially from the point of view of sustainability15. In general it was
observed that majority of the gains of the active period were sustained and that
community level stakeholders were actively involved in sustaining these gains. See
annexure 1 for a summary of the outcomes observed during the consolidation study
'Community Mental Health and Development Program in South India 2008-2011'
•
An ongoing hurdle to promoting sustained community based rehabilitation in mental
health, is the dependency on external funding for the implementation costs. There are
limited foundations interested in funding community mental health. The funder
perspectives and policies are presently guided by the mainstream understanding of
mental illness rehabilitation i.e., disease oriented approach of the 'medical model'. The
'CBR or empowerment model' is yet to gain credibility and acceptance. As a result there
is the potential for ongoing tension between the implementing group and the funder
and efforts at influencing funder perspectives from the CBR perspectives is urgent.
•
An important skill transfer which could not be brought into the earlier phase program is
the 'psycho-social rehabilitation skill transfer' to the families and supporters in the
community. Some families expressed this need at the beginning itself (between the
lines) through their unmet expectations and frustrations with the PWMI, regarding their
economic contributions. As ability to transfer such skills is a rare competency even
among MH professionals (to be found rarely in the rural context) this needs innovative
efforts.
•
Developments during this period demonstrated the enhanced role and potential of
primary stakeholder organisations promoted by the partner NGOs. They had become
effective players in Ml rehabilitation through, demand raising and accessing needed
resources both within the community and from the state services.
The story of Narendra Foundation in the Pavagada Taluka of Karnataka is a powerful
example. The NGO partner had a long term vision and built up and empowered grassroots
stakeholders over the ten years of its implementation work. The cross disability federation
gradually grew in strength and autonomy, integrated mental health concerns into its
priorities. The founding NGO completely withdrew from the scene at the end of the planned
period. The taluka level cross disability federation (Swami Vivekananda Federation) has
successfully engaged with taluka and the district administration, for the mandated
entitlements of the 3% reservation of Plan Funds as well as for medical services. The
grassroots activists of the federation influenced the Karnataka state policy to promote a
cadre of disability workers at the panchayath level - The Village Rehab Worker (VRW). Many
of the federation members function in this capacity and sustain their activism.
•
Observing the new directions being charted out by few effective partners through
building up and empowerment of the primary stakeholder groups, the promoter
organisation was challenged, to build upon the learnings emerging and build capabilities
across the partnership. One initiative started on a pilot basis was to build the grass-roots
stakeholders to become community's resources in mental health 'Fellowship in
Community's Leadership for Mental Health'.
V
The Third phase - post expansion
The holistic CMHD approach was established as suitable to meet the quality of life needs of
PWMIs and families as a result of the successful scaled up phase of intervention. The model had
been replicated successfully by several development organisations in the north and south of the
country (none of them specialized psychiatric care groups). These organisations agreed to
sustain their involvements in this issue at the end of the partnership phase. The 'Consolidation
Study' confirmed that by and large the gains made were sustained (without depending on direct
funding mobilized by the promoter organisation). The promoter organisation had discontinued
dependence only on one foreign source for its funding (channelised through BN UK). However
alternate sources of funding in mental health were difficult to access, especially for southern
states.
During the period of maximum involvement the numbers of PWMI involved in the program had
touched 20,000 (and equal numbers of family carers). Refer annexure 2 for tables 2 and 3
showing some of the quantitative outputs. Intense reflections were focused at the promoter
organisation level on future strategic direction:
Three strategic directions developed over this period and are still going on:
1.
The learning of CMHD implementation were consolidated into trainings in
partnership with TISS and several such trainings were offered to senior
functionaries in the development sector and a few in the governmental sector. A
trainer's manual 'People in our world, Community Mental Health and Development,
The Practices', Nov. 2009,
has been jointly developed with TISS and is available.
The promoter organisation has become technical resource agency for larger CBR networks
and organisations, for integrating CMHD into their larger CBR programs. Presently 4
medium term district level CBR programs are getting implemented, integrating CMHD in the
southern states of AP, Karnataka and TN. The sub-partners of these CBR networks and
organisations are effectively supporting empowerment of large numbers of PWMI and
families.
2.
Through support of an Indian Foundation, new CMHD project was initiated in the
states of Orissa and Maharashtra. This program is presently working through 11
partners in parts of 9 districts in these two states. The learnings from the decade
long implementation experience is adding value to this program and the
innovations tested are getting integrated.
3.
A Fellowship program was initiated and tested to develop and promote grass roots
activists leadership in 'Community's leadership for Mental Health' in partnership
with several people's organisations in Karnataka. Three batches of grassroots
activists were intensively trained for one year each (totaling roughly 70 members).
Most of these Fellows have continued being active in their local communities,
finding meaning in their involvements and facilitating 'communities' leadership in
mental health'.
VI
Conclusion
Basic Needs India and partnership's one and a half decades of interventions in the
community mental health sector, have demonstrated the effective roles of development
agencies in mental illness rehabilitation. Partner organizations from the north, south,
east and west of the country have intervened in a holistic manner, in support of PWMIs
and family carers, for meeting their own needs.
In these locations mental illness
rehabilitation is no more a complex and unsolved issue, hidden in stigma, superstition
and neglect. Through this process these primary stakeholders have also become
empowered to varying extent, to become agents of change for their own mental health
concerns in their communities. One result is that the public care system have started
delivering services (as per existing provisioning) in a sustained manner. The affected
people and families are experiencing a better quality of life.
Community health movement ushered in from the 60s through pioneering community
health programs, established the roles and responsibilities and empowered individuals
and communities for their own health. Some niche areas within the broader health
sector, such as mental health, continue to remain an island of bio-medical domination,
with limited variety of resources available to the affected. It is necessary for empowered
individuals, people's organizations and communities, to claim back ownership of mental
health concerns. The roles and responsibilities of multiple sectors and actors (both state
and community) need to get established and result in multiple resources
available for
mental illness rehabilitation, as also mental health promotion. This process would
hopefully result in psychiatric resources playing their important role, yet not be the
dominant role player in mental health sector.
Two macro level developments encourages hope - a) UNCRPD (United Nations
Convention on Rights of persons with Disabilities, 2007 signed and ratified by India),
that ensures equal human rights including equal recognition before the law (Article 12)
to persons with mental illness - b) WHO promoting community based rehabilitation
even for persons with mental illness (WHO CBR Guidelines, 2010). The CMHD model
aligns with basic principles of UNCRPD and WHO's CBR approach. Hopefully a great
potential exists, for adoption of such a model at a macro level in India, especially when
the model has been successfully replicated in different States. However, the CMHD
model continues to evolve to become more and more rights based, locally relevant and
effective.
Annexure 1
Important findings
of the
consolidation study
'Community
Mental
Health
and
Development Program in South India 2008-2011' confirming the sustainability of the
CMHD program
•
In 21 out of 22 operational districts in the south (except in the district of Nilgiris in TN)
publicly provided services have been made available and sustained, at least at the
district level. A majority of the identified PwMIs have been sustained in the programme.
•
The program had done well in controlling 'side effects' and ‘relapse of symptoms' in
PWMI with about 6% reporting 'Side effects' and 7% with 'relapse of symptoms'.
•
•
Stabilized (free from symptoms) PWMI constituted 46%, a fairly good percentage.
Among all stabilized PwMIs, nearly 16% are involved in livelihood under CMHD
programme; 30% are involved in livelihood with support from partners other than
CMHD programme.
Almost all stable PwMIs are productively involved in household work (roughly 40% of all
identified).
Among the 4,348 numbers about whom data is available, only 943 have dropped out of
the program for various reasons.
•
•
•
The program is gender-sensitive. Out of total 4,766 PWMI 2304 men and 2462 women
in four southern states.
•
Membership in SHGs - 17% women, 10% men; care-givers membership in
SHGs35%.
46% (24%women and 22%men) had accessed BPL card and 10% (5%
women and 5% men) had accessed disability card;
•
•
The Care givers Associations have played a significant role in raising awareness on
mental health issues in the community and in putting pressure on the government to
make medicines available at the district and local PHC levels.
Some difficulties are also experienced, such as:
•
Ignorance of Govt, hospital authorities on Mental Illness as a type of disability
creating problem in getting the benefits available for persons with disabilities.
• Dependence on private psychiatrists to provide treatment is costly. Contribution
money might discourage PLWMIs and families for continuation in treatment and
dropout instances may increase.
•
Non-availability of medicines at DMHP implemented hospitals due to certain
internal government procedure delaying the process.
• Partner organizations, government authorities and the community possess less
knowledge on District Mental Health Programme (DMHP).
• Difficulties and delay to avail disability certificates due to non-availability of
psychiatrists in district hospitals.
Annexure 2
Table 1 - Total coverage of the project (2004 to Dec 2007)
Severe mental illness
Common mental illness
Total
Partner
Male
Female
Male
Female
GASS *
136
177
170
305
788
NF*
104
84
78
88
354
Samuha*
385
378
376
541
1680
ADD India &
VS **
1048
933
670
684
3335
Sacred***
103
68
67
53
291
Total
1776
1640
1361
1671
6448
3416
3032
6448
'Karnataka, ** Tamil Nadu and Kerala, *** Andhra Pradesh
During the period of maximum involvement a few of the quantitative outputs are given below
(extracted from the 7,h half yearly project report January 2011):
The table 2 below shows the classification in to type of mental illness.
Common mental
disorder
Epilepsy
Not
known
Total
4012
3561
0
0
7573
Urban programme
601
625
0
0
1226
Bihar
Jharkhand
programme
2232
3184
693*
0
6109
Orissa programme
1762
1633
58
0
3453
Maharastra
programme
1025
313
0
0
1338
Total
9632
9316
751
0
19699
Partners
South
programme
Severe
disorder
India
mental
* In Bihar and Jharkhand programme, needs of people with epilepsy been met in the mental
health camps
Table 3 showing total number of people received regular treatment.
Partner organization
Male
Female
Total
South India programme
1831 + 618
1872+642
3703 +1260 = 4963
Urban programme
411
412
823
Bihar Jharkhand programme
2315
1706
4021
Orissa programme
980
693
1673
Maharashtra programme
497
349
846
Total
6652
5674
12326
‘(618+642 in south India programme and 1392+928 in Bihar Jharkhand programme) =3580 people have
stopped treatment as they have reached pre morbid level of functioning
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