The International Journal of Psychosocial Rehabilitation

Inclusion of people with mental illness in 

Community Based Rehabilitation: need of the day

 
 
Dr. N. Janardhana & D.M. Naidu
 
Department of Psychiatric Social Work
National Institute of Mental Health and Neuro-sciences (NIMHANS)
Bangalore 560 029


  

Citation:
Janardhana, N & Naidu, DM (2012). Inclusion of people with mental illness in Community Based 
Rehabilitation: need of the day.
 International Journal of Psychosocial Rehabilitation. Vol 16(1) 117-124



Abstract
Through out the world people with mental illness are denied their basic human rights, especially the right to access treatment, rehabilitation and appropriate mental health care (UN 2006, UN 1999).  People with mental illness (PWMI) and their families experience discrimination and exclusion from economic and social activities. Due to stigma, PWMI and their families are often ridiculed and isolated, trapping them in a cycle of poverty. A lack of access to information about their rights and support to exercise these rights perpetuates and deepens this marginalization. People with disabilities also do experience stigma, discrimination and social exclusion. However, the situation, in the case of people with disabilities has improved in many countries through CBR initiatives. Including PWMI having psychosocial disabilities in CBR programme seems an ideal answer to address the needs and rights of PWMI along with other people with disabilities.


Introduction
Mental illness is not a personal failure, it happens to most of us at one time or the other in life. Mental, behavioural and social health problems are an increasing part of health problems in the world.  The WHO estimates that mental and behavioural disorders constitute 12% of the global burden of disease.  Worldwide, nearly 450 million people have mental or behavioural disorder (WHO 2001). The number of PWMI will increase substantially in the coming decades for the following reasons. Firstly the number of people living in the age groups of risk for certain illness is increasing because of the changes in the demographic features. Thus there has been increase in the number of person with mental illness in the age group of 15- 45 years. Secondly, there has been substantial increase in the geriatric population having mental health problems, as the life expectancy is increasing.  Thirdly, there is an overall increase in the rate of depression seen in all age groups as an effect of the changing socio- cultural-economic and political situation of the modern world (Janardhan and Naidu, 2006; Janardhan and Naidu 2007).

Mental illness in certain cases leads to psychosocial disability (Tally and Murali 2001). Advances in behavioural science have proven that mental and behavioural disorders are treatable like any other physical illness (WHO 2001). Unfortunately, in most countries mental health and disorders are low priority, with no services in the community for treatment and well-being. Though the burden resulting from psychiatric, psychosocial, and behavioural disorders are enormous; it is grossly under represented by conventional public health statistics. Nearly 10% of Disability Adjusted Life Years (DALYs) across all age groups are due to depressive disorders, suicides and alcohol related problems. It is estimated by WHO that in 2020 the burden of mental disorders would increases to 15% and mental disorders will be among the leading cause of global disease burden by 2020, at which time, depression alone is expected to become the second highest cause of death and disability world wide (WHO 2001). 

If a person is unable to perform an activity because of disease/illness or due to bodily impairment, the person is considered as disabled. Though psychiatric disorders do not cause any physical impairment, they can stop a person from doing many activities that are expected of them. The disability in psychiatric illnesses is dynamic being influenced by the nature of illness, phase of the illness, treatment status and social support network available to them. PWMI are treated as second-class citizens with no adequate facilities or provision from the government. As a result, they face chronic ill health and the families experience economic and social burden. In certain cases this leads to social destitution.

Goal of Inclusion of people with mental illness in the CBR programme:
PWMI participate in societal activities, having access to generic services as well as appropriate support and which they consent to.

Purpose of inclusion:
To enable development practitioners to include mental health issues in the existing CBR programmes through increased understanding of PWMI, recognising psychosocial disabilities, appreciating the similarity in approaches, cost effectiveness etc.

Basic Needs India (BNI), a resource group in mental health and development believes that mental health is a development issue; hence it can be included in the development activities of the organizations. BNI provides technical support to the CBOs and NGOs to include mental health issues in their existing programmes. BNI has been successful in including PWMI in 50 CBOs and NGOs, carrying out CBR work and other development activities. In the process, awareness has been created about the needs of PWMI in the communities and among local and district level government authorities. Many people recovering from mental illness and their family members have joined self- help groups of people with disabilities. While working with the CBR organizations in following activities PWMI can be included.

CBR and people with mental illness
Development and changes in the concept of CBR over the last two decades has influenced the thought of inclusion of mental health in CBR programmes. The CBR strategy shifts rehabilitation interventions to homes and communities of people with disabilities.  Basic services are provided or facilitated by CBR workers who are minimally qualified non professionals but who are highly qualified change agents. The main goal of rehabilitation has become broader and focuses beyond the individual, to the family and communities in which people live.  CBR recognizes that breaking down barriers to inclusion in society is as important to the mission of the CBR programme as is the functional rehabilitation of individuals with disabilities. Thus the universal mission of CBR is:
1.    To enhance activities of daily life of disabled persons
2.    To create awareness in disabled person’s environment to achieve barrier free situations around him and help him in meeting all human rights.
3.    To create a situation in which the community of the disabled persons, participates fully and assimilate ownership of their integration in to the society.  The ownership lies with the affected persons. Maya Thomas and M.J Thomas 2003, Pritivish 2006).

The above mission is no exception for PWMI.  CBR programmes can link with mental health professionals, users of mental health services, DPOs and SHGs to broaden its scope to include people with psycho social disabilities and to promote community mental health services

Indicators of readiness
In order to begin a mental health component in the CBR programme, the following readiness indicators should be demonstrated:
1. Organization’s willingness to work with mental illness
2. Basic understanding of the mental health concept/problem
3. A match of context between current CBR activities and mental health and     development needs
4. Resource stability of the organization (Shoba Raja 2005)
 
Inclusion of mental health in to CBR:
There are a number of reasons why mental health should be integrated into community based rehabilitation programmes:
•    Community processes, full participation, equal opportunities, social inclusion, gender, diversity and a focus on rights are some of the key common elements of CBR work. Community mental health work is no different so the programmes integrate well together.
•    The high prevalence of psychosocial disabilities emerging through mental illness and its impact on communities, societies and economies means that CBR workers are confronted with the issues in their work.  CBR programmes can have a positive impact on the lives of PWMI, their families and on the situations in which people live by including people with psychosocial disabilities in their programmes (WHO 2010). 
•    there are a limited number of mental health professionals and mental health  services in low-income countries, making a CBR strategy which empowers community level stakeholders to take action an important strategy
•    the emerging trend away from vertical health programmes to integrated, multipurpose health programme models favours primary level services and community based strategies
•    there is an increasing recognition of the importance of early detection and treatment of mental illness in order to prevent chronic conditions
•    the goal of continuity of care and inclusion of people who are mentally ill into the community is more readily achieved when there is an existing community based strategy
•    the prevalence of mental health problems among people with other disabilities means that a mental health component in the CBR programmes brings added value

The care for people with mental illness can be provided by :   
-    Family members providing care to PWMI starts from baring all the violent behaviour, to accompanying them for treatment, than administering medicines, helping to engage in gainful productive work.
-    Community providing support for the well-being of PWMI. This is seen in the form of not labelling them as mad people, giving opportunities and advocating for the ensuring measures to meet the needs of PWMI.
-    Rehabilitation workers providing care for the PWMI and their families. This starts with identification, assessment, follow up, home based support and linking them to existing groups and mainstreaming.
-    Organization providing support to deal with other associated problems of PWMI and their caregivers. This is seen in the form of conducting camps, integrating them in to their existing programmes.
-    Provided with the above support, the role of mental health professionals would be more meaningful.

Suggested Activities for inclusion of people with mental illness to be included in the existing CBR programmes:

1. Promote community based mental health services

The community based services should emphasize on community acceptance, family involvement, social integration and livelihood opportunities as a key component of interventions while rehabilitating people with disabilities. Similar approach is required for PWMI for integrating them in to the community. An approach, where in medical inputs are seen as a part of a larger whole including income generation and mainstreaming individuals with mental health problems into the full community.

The community based organization, SACRED, included mental health programme in  their existing CBR programme. PWMI had to travel 100 kilometres to attend the mental health camp conducted by the National Institute of Mental Health And Neuro Science because there were no services available in that district. With the support of the federation of people with disabilities, PWMI were successful in sensitising the district authorities and advocating for the availability of mental health services with in the district. Of course the struggle took more than three years for the appointment of Psychiatrist in the District Hospital

Similar experience in Koppal and Raichur districts, PWMI and their caregivers were travelling 10-12 hours to reach Karnataka Institute of Mental Health, Dharwad for assessment, diagnosis and treatment services. Organizations of people with disabilities promoted by CBR programme of Samuha sensitised the authorities and were successful in getting the services with in their district. Awareness building among family members and community complemented the efforts.

2. Work with Disability people’s organizations (DPOs)

and service users to advocate for access to treatment: Access to treatment as near as possible


3. Involve people with mental illness and their families in livelihood programmes
A tale of market
Mr. S a beneficiary of the mental health programme implemented by BasicNeeds India  partner in Tamilnadu shares his experience. S suffered from mental illness but has now recovered sufficiently to be able to run a small enterprise selling cooking ingredients on his bicycle. He rides about 35 kilometres per day on a regular set of routes and has built up a network of established customers. At the outset, he spent a good deal of time working out the various ingredients that were likely to be in greatest demand, such as pepper and coriander, and the quantities required.  He sells small packets tailored exactly to the needs of low-income customers who purchase their requirements daily and at affordable prices. He earns 2 US dollars a day.

Before he became mentally ill, Mr V worked for thirty years in the weaving industry. He gave it up and concentrated in overcoming his illness with the support of his family. Following treatment and ongoing assistance from an NGO, he decided to set up a small business supplying snacks to travellers using the bus shelter in his village. He starts preparing the food at 5.00am and sells from 8.00am until noon and than he rests. Trade has been consistently good and he earns 3 US dollars a day. This income although modest, is comparable to others in his village. He describes himself as having a completely new beginning. He is confident and contented, enjoying the relative freedom of the work that he does now. The local village council was instrumental in his success, allowing Mr V to use the bus shelter, which is a favourable location for his business

4. Promote community mental health services
Mental health professionals in several low-income countries are actively promoting Community Mental Health (CMH) and are attempting to influence their governments to initiate measures to bring mental health into the primary health care system. CBR programmes can work with mental health professionals, local health centre staff and users of mental health services to promote community mental health services. Many mental health problems can be effectively resolved by working together with people who experience mental illness in their own homes and communities, using resources and support networks that are available to them. Awareness raising campaigns and large-scale dissemination of knowledge and skills would help in reducing the stigma attached to illness. Building knowledge and awareness among families can make the real difference, in ensuring that PWMI are integral members of the family and community, participating in all social and cultural activities.

Street theatre
Street theatres play a major role in generating awareness in the community. Some organizations also have formed puppet shows troops. Street plays can provide knowledge on causes, treatments and symptoms of mental illness.  The purpose is to demystify the subject and to raise the awareness of the public on mental health issues. Street theatres can also highlight the important roles and responsibilities of families and the community, which could go long way in rehabilitating PWMI. The street theatre performances can be followed by question and answer sessions, where people can ask specific questions.
Self help groups

Self-help groups are a common feature of CBR and development work. A self-help group of women were clearly working hard to be strong in the face of personal tragedy and unrelenting poverty. Comprising twelve members, they came together with the support of CBR worker to promote savings of Rs.100 per month per person so that individuals can accumulate enough to buy a buffalo. This would then be a source of regular income, the milk being sold to a cooperative at a guaranteed rate per litre. One of the women had lost her husband to snakebite the previous week and so the group was rallied around to support her and her three children.

The link comes from the member living with schizophrenia, who has been accepted as treasurer for her literacy skills (despite only having stabilised her schizophrenia during the previous year). And she also derives benefit as any other marginalized member of the group. Together the group advocates for meeting the individual, group and community needs.

This way they play an important role in integrating PWMI in main stream and provide mutual support to people in crisis.

5. Seek out alliances for training and mutual support
Local community organizations staff like community rehabilitation workers/field staffs, coordinators of self-help/user groups and other programmes, lay volunteers/ animators, nurses, and health workers; who are not professionals in mental health or health care provide a variety of services. Many of these informal community-care providers have little or no formal mental health care training, but in many low income countries they are the main source of community mental health provision. They are usually accessible and generally well accepted in local communities. They can help with the integration of people with mental disorders into community activities and the other developmental activities of their own organizations, and thus play an supportive role in meeting the treatment needs of PWMI.


Caregivers Associations
PWMI and their caregivers are encouraged to form an association of their own.  This provides a platform for them to discuss various problems they share and find solutions. For example, Mr B’s, family experienced unwelcome reactions of neighbours towards their son.  Mr B was wandering in the streets and his parents had to find him and bring him back. The caregivers’ association in the village took the responsibility to explain the illness to others. Mr B has now returned to work as a labourer and is maintaining full-time employment.

Another caregivers association took the decision to advocate for their right to treatment. The association members met the district authorities, explained to them the need for treatment to be made available at their block level. PWMI and their families decided to voice their needs rather than depending on the local organizations. This resulted in the deputation of a psychiatrist to conduct mental health camps in the local health care centres on a monthly basis, with medicines being distributed during these camps..

Some of the important roles of the CBR and the community development work force are:
-    awareness creation and dissemination of information;
-    identification of people with mental health problems and referral to health services;
-    crisis support; 
-    home based support - supportive care, including basic information and counselling;
-    helping in the activities of daily living skills and community reintegration;
-    formation of caregivers groups/associations;
-    advocating for the rights of PWMI;
-    preventive and promotive services;
-    Organising affected people to advocate for meeting their needs. 

Mr M, a young volunteer from a youth group in Jalahalli, took initiative in supporting a  woman who is mentally ill and destitute in his village. He witnessed a shop keeper physically abusing (pushing) her for entering his restaurant. Mr M took this abuse seriously. With the help of an NGO he took her to the mental hospital for treatment, following guidelines of mental health act for the involuntary admission. After her discharge, he spoke with the woman’s relatives and made arrangements for her stay and for her livelihood. People like Mr M, volunteer to support NGOs in their work. NGOs also experience stabilised people playing the role of volunteers and advocates. Always people inspired by good work voluntarily offer assistance.

Advantages of inclusion of people with mental illness in the existing CBR programmes:
1.     Meeting the needs of most disadvantaged group.
2.    This promotes faster integration of PWMI into the mainstream societal activities.
3.    Promotes good mental health in the community and leads to early identification.
4.    Inclusion of PWMI in CBR programme would be cost effective.
5.    CBR strategies and approaches very much fit in meeting the needs of PWMI.
6.    Encourages innovative use of the resources that already exist (for example street theatre troops, advocacy groups, etc.)
7.    Inclusion would ensure coverage of all people with disabilities.
8.    Mental health problems of people with disabilities are addressed, which adds value to the existing CBR programme.
9.    An environment would be built where in all disadvantaged groups including PWMI fully participate in their own development and the community in which they live in.

CBO
The project head during one of the meeting expressed that because of inclusion of the mental health programme, the credibility of the organization has increased, the organization got more recognition in the community and also in the district administration. The organization leaders were invited to become members of the government constituted boards. District authorities were appreciative and requests were received to extend mental health services to other parts of the district.

Broaden understanding of the issues
Development practitioners need basic understanding of mental disorders. It is essential to consult PWMI and their family members to listen to their experiences, and needs aspirations to understand that particular individual and the family. Training can be provided in basic competencies, such as counselling- listening and communication skills and need to maintain confidentiality, managing conflict of interests while dealing with individuals as well as their families, maintaining a neutral stance and dealing with disturbing emotions.

Outcomes expected from inclusion:
By including PWMI in CBR programmes, the following outcomes can be achieved:
•    PWMI advocate for their rights and entitlements as equal and full participants in the disability movement
•    PWMI participate in their own development and the development of communities in which they live
•    PWMI are listened to and are able to consent to or refuse treatment in circumstances that are not life-threatening.
•    PWMI have access to appropriate community-based treatment and support.
•    Families of PWMI are provided with the support
•    PWMI and their families are able to earn their livelihoods.
•    Community health workers include mental health issues as an integral aspect of their work
•    PWMI are able to access health care  and educational services within and outside of the community
•    PWMI participate in the social, cultural and religious life of their communities as they choose.
•    PWMI fulfil their roles as community members, family members, parents and citizens

Conclusion:
It has been tested and proved that inclusion of mental health issues in CBR programmes is possible, cost effective and help building an environment where in people with all disabilities access their entitlements and enjoy equal opportunities for full participation in their own communities. A different and better world for all people, including PWMI can be created through community based mental health services, where in the communities understand issues related to mental health, resulting in positive response to the issues. In this scenario the families of people who are  mentally ill are vitally involved in bringing change in the attitude of the community. Through these an environment of mutual understanding can be built, where in PWMI enjoy their rights.    


 

References:

Janardhan  and Naidu(2006), Community Mental Health and Development model evolved through consulting PWMI in Mental health by the people Edited by Murthy 2006.

Janardhan and Naidu (2007) Mental Health in India: an over view,  CHC publication, circulated during national assembly on health of Janaarogya Andolona.

Maya Thomas and M.J. Thomas (2003) Manual for CBR planners, Asia pacific Disability Rehabilitation Journal.

Mental Health Atlas 2005, World Health Organization, Geneva - 2005

Prathima Murthy (1998) Manual of mental health care for  women in custody, Department of psychiatry, National Institute of mental health and Neuro sciences

S Pruthvish (2006) Community Based Rehabilitation of persons with Disabilities, Jaypee publishers

Shoba Raja, Director Policy & Practice, BasicNeeds – CBR MH success indicators research study report - 2005

Taly and Murali (2001) Foundations and Techniques in Psychiatric Rehabilitation, manual for CBR workers and caregivers, National Institute of mental health and Neuro sciences,

UN Convention on the Rights of people with disabilities, New York UN 2006

UN Convention on the Rights of people with disabilities, New York UN 2006,

UN resolution 46/119, principles for protection of persons with mental illness and the improvement of mental health care (1991)

UN Standard rules on Equalization of opportunities for people with disabilities ( Resoultion 48/96) New York, Geneva, UN 1997

World Health Report 2001, Mental health: New Understanding New Hope Geneva, WHO 2001

World Health Report 2006, working together for health Geneva, WHO

WHO (2010) Community Based Rehabilitation CBR Guidelines, WHO

 


 


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