Seeking a Balance Between Social and Technical Aspects of Rehabilitation
One of the strengths of Community Based Rehabilitation, at least in theory, is that it seeks a balance between the technical and social aspects of rehabilitation. Whereas institutionalized rehabilitation services have conventionally focused on technical or biomedical interventions and largely ignored the social concerns, CBR emphasizes the latter. It focuses on community awareness raising, mainstreaming of disabled children into schools, skills training, and work possibilities: in short equal opportunities for all.
However, a major weakness of many CBR programs in most countries is that, whereas social rehabilitation is often fairly well developed, the technical side has often been neglected. That is to say that the physical needs of disabled persons—ranging from individual therapeutic assistance to assistive devices—are often poorly or inappropriately responded to.
The Achilles Heel of Community-Based Rehabilitation
One reason for the technical inadequacy of many CBR programs is that the local workers are usually part-time volunteers who receive very little training. Because their CBR activities are unpaid, they must fit them around their other work and home obligations. Thus they never get enough experience to gain the skills and confidence necessary to respond adequately to the therapeutic and technical needs of those they help. Consequently, many disabled persons fall far short of meeting their potentials, physically and therefore socially.
Ideally, to make up for their limited training and experience, CBR volunteers should have sufficient skilled backup and referral possibilities so that the therapeutic and technical needs of disabled people can be met. But too often the support system is ineffective or nonfunctional. As a result the many crucial needs of disabled persons remain unmet. E.g., children who have a potential for walking never do. Spastic infants who need a seat that positions them so they can swallow food without gagging die of pneumonia or hunger. And too often the exercises or “physiotherapy” applied to disabled persons is nothing more than a standardized ritual that has little to do with the actual needs of the individual.
Different Approaches to Meeting the Technical Needs in CBR Programs
All of the 3 CBR initiatives where I facilitated workshops in India had a fairly similar approach to addressing the social needs of disabled persons. They all had community awareness raising campaigns to encourage greater inclusion and respect for “persons with different abilities.” They all made efforts to integrate disabled children into the public schools. And they all had skills training and “micro-finance” schemes to help disabled persons and their families increase their income.
But when it came to meeting technical and therapeutic needs, the 3 programs took quite different approaches, as follows:
1. Vikash CBR Program in Koraput, Orrisa
Vikash CBR Program in Koraput, Orrisa, has a front-line cadre of village CBR “activists” who, rather than being part-time volunteers, are employed full time with modest salaries (paid for by Action Aid). The activists, in turn, are backed up by a comprehensive team of rehabilitation professionals that includes special educators, a physiotherapist, an occupational therapist, a speech therapist, a psychologist, and a prosthetist-orthotist, all of whom devote much of their time visiting and advising the activists. The strength of the program is in the area of social integration with emphasis on education of children and income generating training opportunities for adults, including a tailoring shop and bakery. A preschool program run by well trained, very caring village women (2 unmarried sisters) does an excellent job in preparing disabled children—including deaf and blind children—for school.
The Vikash CBR Program, with its paid full-time activists and professional support team, provides a scope and quality of services better than many other programs. However its annual budget, which works out to $80 per disabled person served, is higher than India’s per capita health budget, and therefore probably not a realistic model for scaling up to a national level.
Also, although this program has a professional back-up staff including a physiotherapist and a limb-and-brace maker, to my surprise we encountered children with club feet that could have been corrected long before with serial casting, and persons in the tailoring program who had one leg paralyzed by polio and walked with poles, whereas they could have walked more easily with crutches.
2. Jan Vikas Samiti, and Kiran near Varanasi, Uttar Pradesh
Jan Vikas Samiti (JVS) is a “social work” organization of the Varanasi Province of The Indian Missionary Society. It works primarily for the enablement and livelihood enhancement of women living in slums and rural areas. However it now includes an extensive Community Based Rehabilitation initiative assisted by Liliane Fonds. Although the main focus of the CBR program is in the social area (daily living skills, schooling, and “livelihood” opportunities), for the technical side of rehabilitation the program seeks the help of Kiran.
Kiran “Children’s Village” is a large rural rehabilitation center founded by a former nun from Switzerland. The spacious campus includes a school for children with all disabilities (which prepares them for entering public schools), various skills training shops, and a well equipped orthopedic and prosthetic workshop. It has a very capable professional staff covering a wide range of rehabilitation skills. Of its many good technicians, several are disabled. Kiran also has a community outreach program, which works closely with the JVS CBR program.
As result of the collaboration between Jan Vikas and Kiran, this initiative has the best balance between the social and technical aspects of rehabilitation, and the highest quality of services that I encountered on this visit to India. However, at an annual cost of at least $50 per child assisted, the program would be hard for the government to replicate (at least without cutting back on India’s military spending).
3. Network of People with disAbilities Organizations of Andhra Pradesh (NPdO), Hyderabad, AP
The SLF workshop outside of Hyderabad was organized in collaboration with a statewide organization of “disabled activists”, NPdO, that has launched a CBR program in the rural area. Run completely by disabled persons, until now the focus of the program has been entirely on “issues”—that is to say on awareness raising and demands concerning the rights and opportunities of disabled people.
The NPdO has worked hard to inform disabled persons of their legal rights to education, health care, reduced bus and train fares, economic aid, and other “entitlements.” But in terms of the therapeutic and technical needs of disabled persons, they have done almost nothing. They say they help disabled persons apply to government services for needed surgery, therapy, and assistive equipment. But the results have been almost nil. We saw numerous people in the area crawling or hobbling with sticks who could have managed much better had they received timely therapy and assistive equipment. But there was virtually no therapy happening. And except for one pair of badly adjusted crutches, the only assistive equipment we saw were large hand-powered tricycles—many of them unused because they didn’t meet the needs of the recipients.
Failure of the World Bank Disability Initiative in Andhra Pradesh
In 2002 I went to India as an advisor to the disability component of the World Bank sponsored “Andhra Pradesh Rural Poverty Reduction Program.” At that time many plans were made to help disabled people meet their most pressing needs. But in 2005, at least in the part of rural Andhra Pradesh we visited, disabled people’s needs remained almost totally unmet. The NPdO tries to help people obtain their legal rights, but even that is a frustrating uphill battle.
Fortunately, the disabled leaders of the NPdO who participated eagerly in our workshop are committed to learning more about disabled persons’ technical needs and helping families produce appropriate low-cost aids. They agreed to send me photos of their work. If the NPdO, with its thousands of members throughout Andhra Pradesh, takes on this challenge, it may prove to have a greater impact on the enablement of disabled persons than all the costly inputs of the World Bank.