The Indian Journal of Occupational Therapy : Vol. XXXV: No.

OCCUPATIONAL THERAPY IN COMMUNITY BASED REHABILITATION

Satish Mishra, Mobility India, Bangalore

HARD FACTS
* 1 Billon population distributed over 27 States & 7 Union Territoties that are further divided into 557 administrative units called districts. About 5% persons with disabilities. 78% population lives in rural areas. 15% people who live in urban areas have access to some kind of rehabilitation service whereas in rural areas it is only 1%. On average 5-10% person with disabilities has access to basic rehabilitation services. India has more disabled people than the total population of UK, Canada or Australia. India: Disabled population is about 6 crores. UK: Total population is 5.9 crores. Canada: Total population is 3 crores. Australia: Total population is 1.9 crores.

The links between poverty, illiteracy, poor health and disability are well recognised - ALL Related to EACH OTHER. Our images about disability/ disabled people are generally NEGATIVE. We were not born with the images. We have developed ideas about disabled people by hearing and seeing. We have very rarely seen disabled people in everyday roles like others. A major consequence of disability is social isolation: disabled people are not part of general life and often face rejection from society. Often it is a social stigma to have a disablity or a disabled person in the family. If we want to bring about a change in the attitudes and ideas of the general people (and disabled people) there is a need for them to see disabled people in everyday life like anybody else in the family, school, workplace, social and political life. There is a need for all to see disabled people in different roles (parent, earning member, student in the local school, decision maker, player etc.) both at the level of the family and the community at large.

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India: disabled population 6 crores-these are conservative estimates. Some sources estimated 10-11% of the total population with disabilities, implying 10-11 crores. Earlier understanding was Impairment leads to Disability but the most significant aspect of the change in present days, is the recognition, that role of people with disabilities can be limited in their participation in family, community and societal roles not merely because of physical or mental impairments, but because of societal attitudes and environmental barriers.

NEEDS - Statistics shows that

* * * * * * * 10 million people require some kind of therapy 10 million people need some kind of orhtoses or prosthesis Beside medical professionals, ratio of personnel needed to rehabilitate 20 million population is 1:1000 10000 Orthtist/Prosthetist 10000 therapists 40000 CBR workers (1:500) 2000 CBR managers (1:10,000)

POVERTY & DISABILITY

Majority of the disabled people are in the rural areas. Lack of access to basic health care and other services, lack of work and economic security, unsafe living conditions, lack of access to safe drinking water, lack of access to education and information, unsafe roads and transport systems, unsafe working conditions, natural disasters like floods and draughts, violence and conflicts all are causes of disability. All these factors are directly linked with poverty. Correspondence : Dr. Satish Mishra Occupational Therapist, Mobility India, 1st & 1st A Cross, 2nd Phase, J.P. Nagar, Bangalore - 560078. (Tel.: 6492222, 6494444) E-Mail - e-mail@mobility-india.org The paper was presented with Youth Talent Award for the best paper on C.B.R., during XXXXth National Conference of AIOTA in Feb.2003 at Bangalore

Seeing the above statistics, where is the human resource and how to meet to need???? To reach the Mass: to ensure rehabilitation facilities for the majority we also need to understand our health structure and then explore the possibilities to integrate rehabilitation facilities in the existing health care delivery system. * * * * * * Primary Health Centres & Sub-Centres Community Health Centres District Hospital/Health Centre Specialist Hospitals Teaching Hospitals Camps

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DIFFERENT APPROACHES REHABILITATION

INSTITUTE BASED REHABILITATION (IBR) Medical Model:

IN

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Expensive Medical

CBR
* * * * * * * * * * * * Can be anywhere PWD/family play an important role in decision making Environment is equally considered Usually Proactive Early Identification Early Intervention Guaranteed Follow Up Most of the work carried by CBR Workers or Semi Professionals Nearer often within reach Difficult to tackle complicated problems Economic Holistic

Usually followed by Institutes whereas service providers only concentrate on medical problems-look at the eyes, hands or legs, prescribe, occasionally intervenes and consider medical rehabilitation is the only answer-RELATIONSHIP OFTEN GIVER & TAKER Uaually from Centre/ Outreach/ Mobile/Camp

COMMUNITY BASED REHABILITATION (CBR)Medical + Social Model :

In this model the community and persons with disabilities are major resource. It is more democratic in nature where people with disabilities play an important role in decision making. It reflects rights perspective rather than typical charity. Most of the Rehabilitation Intervention takes place at the doorstep of people with disabilities. Social inclusion is more important than medical rehabilitation Early Intervention-Regular Follow Up-Total Rehabilitation are the main highlights

CBR-DEFINITION BY UN:
CBR is a STRATEGY within general community development for rehabilitation, equalization of opportunities and social inclusion of all people with disabilities. Approximately two decades have passed since the concept of community based rehabilitation (CBR) was presented as a strategy for improving the lives of people with disabilities. BUT, despite the progress made in the past two decades, there are still MILLIONS of people with disabilities do not receive basic rehabilitation services and are not participating equally in school, work, or social activities. CBR promotes Human Rights

CBR & IBR BOTH NEEDED BUT WITH A BALANCE. ALL IBR SHOULD HAVE A NUMBER OF CBR PROGRAMS. SUCCESS OF CBR ALSO DEPENDS ON GOOD IBR BACK UP/REFFERAL SYSTEM. Link between CBR & Occupational Therapy Service
* * * * Occupational Therapy Service becomes more effective with the existence of CBR structure Give priority to the early detection of disabilities Consider the socio-economic situation and needs of persons with disabilities Guide persons with disabilities towards sources of funding for treatment Act as link between the person with disability, and the occupational therapy services Explain the treatment programme to the person with disability and the family Refer persons with disabilities to the appropriate support or service level together with information about the needs and expectations of the person Assist persons with disabilities in preparations for the fitting and use of prosthetic and orthotic devices Encourage the person with disability to carry out needed therapeutic activities and exercises Assist with follow-up of the person with disability with regard

DIFFERENCE BETWEEN IBR AND CBR IBR

* * * * * * * * * * Mostly in cities Service providers are decision makers - one way traffic Decision is taken considering ideal condition Usually Responsive Late Identification Late Intervention Follow up?? Most of the work carried by Professionals Person with Disability often has to travel long distance sacrificing their daily wage Easy to tackle complicated problems

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to therapy, the use of Orthosis and Prosthesis * * Assist in complete rehabilitation of the person with disability Assist with adaptation of the environment and take measures to facilitate accessibility, good hygiene and activities of daily living Help to prevent causes of disabilty, e.g. through good hygiene, wound treatment, and prevention of secondary deformities such as contractures and bed-sores Arrange for maintenance and repairs to prosthetic and orthotic devices Help in the provision of simple mobility and rehabilitation devices Help persons with disabilities to be integrated into society, e.g. through education and work opportunities Promote awareness of the benefits of Therapy and using prosthetics and orthotics devices Provide information to the appropriate support level with regard to follow-up and the acceptance and use of devices *

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they told that no one is disabled in their house. Then CBR workers slowly started to communicate with the family and built rapport with them. Occupational Therapist visited their house for assessment and found that she was using Metal KAFO(Rt) but not regularly due to heaviness. She was not going out of the house. She stopped her schooling up to 5th standard because she was not able to walk. After getting the history, therapist explained clearly about the condition and the importance of plastic KAFO. They also discussed with the family regarding her studies. At last they accepted to use Orthosis and send her to school. Orthotic & Prosthetic took measurement for her and she was given Rt. KAFO with elbow crutches. She was given gait training and now she is able to walk independently. She has joined the school again. Now she came out from the corner of house to the outside world and started to enjoy the life. Aysha is case of C.P. spastic diplegia of 4 years old. Mother is a housewife and father works in a shop and they live in their brother's house. Aysha's elder brother Nausad is also a C.P. Father has to look after the family but he doesn't have specific job, just working in a petty shop and getting less wages that can only fulfill their daily needs. In this condition, she was identified by CBR workers. Occupastional therapist did assessment for her in her house. It was found that she has difficulty in standing and walking and has tightness in hip, knee and ankle (bilateral). Their residence is in Wilson Garden but mother with her two children came to her sister-in-law's house in Ilyas Nagar for regular therapy, for two days in a week. The regular therapy could release her tightness of hip, knee and ankle. Now she is able to walk with support. She is going to school and independent in her ADL activities. Jane Saldhna is a Bilateral PPRP of 20 years old. When she was one year old, her father left her in their relative's house. Her father used to visit when he had time. At 3 years old, she got fever and her both legs became weak. When she was 10 years old, she developed contractures in her lower limbs due to disuse of limbs. Her sisters took her to hospital and doctor suggested for surgery. She underwent surgery at the right lower limb. At 14 years, surgery was done at left lower limb also and she was given Bilateral Metal HKAFO but she didn't use because of pain. Jane's life began to bloom when CBR worker met her in a wheel chair and gave her the confidence that she can also prove herself. Occupational therapist did assessment and prescribed Bil. KAFO with axillary crutch. She joined Mobility India in December - 2001 in P & O workshop for training. Regular therapy was given for her tightness in knee and T.A. in both legs. She started to use Plastic KAFO and gait training was given to her. Slowly she started to walk by herself. With her confidence and therapy support, now she finds that her life has some meaning in it. 15

What is Rehabilitation - to compensate individual's impairments/ disability? To restore individual's full capacity, that is not only correcting a deformity or providing an Orthosis/Prosthesis - rehabilitation goes much beyond.... "TOTAL REHABILITATION" - a child has to go to school or adult have to go for skill training or income generation activities after surgical/rehabilitation intervention To ensure that all related professional work as TEAM

NEED OF REHABILITATION SERVICE

Only 15% people living in urban areas and 3% people living in rural areas can avail rehabilitation service - in India, total coverage according Ministry of Social Justice & Empowerement is only 5.7%. We all need to work together to address the need as a "TEAM". As part of our Mobility India team approach in Community Based Rehabilitation, the efforts are made to provide the neccessary Rehabilitation Services in the 15 urban slum of Banglore, reaching out to more than 500 PWDs through a networking of more than 20 staffs and 10 volunteers. The task is huge, resources are less but we need to work on. Any element of team missing will affect the whole program drastically? To certify my presentation I have few case studies * Irfana is a 13 year-old girl of bilateral PPRP. She lives in Ilyas Nagar a slum in Banglore where CBR program is run. Her father is a driver. They have 3 female children and she is the second daughter. When CBR workers went to their house *

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Subramani is 8 years old and was born with cerebral palsy (Spastic Quadriplegia). He and his family live in Bansankari area, Banglore. When CBR workers and occupational therapist visited the family at the first time, Subramani's mother described his life. 'At the age of 6 months he got severe fever and admitted in Sanjay Gandhi Hospital, Banglore for the treatment and he also got an epileptic attack after the fever. Subramani was not able to move his hands, legs and body very easily. He was suggested some therapy at the hospital, but as they were poor they had difficulty to raise money for their daily food and clothes, so after some time they stopped trying treatment for him thinking that it was their fate.' We motivated the family members that it is imporatant for them to help Subramani because he is growing up and you cannot always do every work for him at least we should make the person independent as much as possible in his daily work. Through the regular exercise his body tightness started reducing and initiated to do many voluntary movements. After regular therapy he was able to sit without support and he was trying to use the hands. With the regular stretching we planned to involve some activity for his both hands to make some voluntary movements, which will help in participation of his ADL. We provided lapboard with some pegs so that the child should sit with minimum support and make use of hands to play with the pegs. We also aimed that with this activity the child may also improve his sitting balance. Through ADL training, child is now able to do independent feeding, and upper body dressing. We have also planned to send child to special school, which might help him to attend the schooling in future.

promote increased participation of Disabled People's Organizations in CBR programs, and to encourage increased collaboration and co-operation among all governmental and non-governmental services and groups that can contribute to the success of CBR.

Similar efforts are an ongoing part with the rural based organisations that are19 in numbers, rendering services in most of the southern states of India. Another Example SAMUHA is an integrated rural development organisation, in Jlahali village, 75 km. north west of Raichur, Karnataka. In late 90s they started CBR programme, which aimed at working PWDs within the community. It involved mobility, education, health and income generation. Till now they have been successful in Rehabilitation of more than 600 person with disabilities. Medical rehabilitation is important, but it is seldom realised that it is a goal oriented and time limited process. Putting the level of 'rehabilitation' on all actions concerning disabled persons, can obstruct fulfilment of their potential for selfdetermination and participation. The purpose of this presentation is to continue to promote and support CBR and its objectives as part of the ongoing efforts that are needed to achieve equalization of opportunities for people with disabilities. So, policy-makers and program managers has to have a clear understanding about implementing/promoting CBR, to

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