Article

Frontline Initiative International

Direct Care Issues in Industrialized and Developing Countries

Author

William Ebenstein is executive director of Reaching Up & The City University of New York Consortium for the Study of Disabilities

All over the world, cultural, economic, political, legal and social factors are forcing significant changes in the way people with disabilities and their families are being supported. As the articles in this issue illustrate, support delivery models differ in scale and scope, but many of the situations that Direct Support Professionals (DSPs) face are the same in both developing and industrialized countries. A consensus is growing worldwide that a partnership between people with disabilities, families, communities and frontline workers should be the starting point and center of any service model. As new service delivery models have emerged, dialogue between representatives of these newer models and traditional Western models has begun, resulting in greatly enhanced support efforts. For instance, in 1995, Reaching Up, a nonprofit organization founded by John F. Kennedy, Jr. and The City University of New York (CUNY), started an exchange program with disability advocates in Jamaica and Vietnam in order to promote this dialogue.

The roots of the support systems in these two countries goes back to the late 1980s. During much of that decade, the practice was to attempt to transplant traditional Western rehabilitation models in developing countries. When these efforts failed, the World Health Organization (WHO) developed what is known as the Community-Based Rehabilitation (CBR) model. It is a delivery system that relies mostly on community workers, home visitors, family members and volunteers. Ninety percent of people with disabilities live in developing countries, but funding for a large professional workforce is impossible. Many have recognized that providing training for committed, local, and mostly voluntary, community personnel is the only viable option. 

CBR is based on the idea that mobilizing people with disabilities and their families, friends, neighbors and local communities as the focus of support is the only credible way to provide basic services for everyone. With proper training, families and communities supported by CBR workers can provide an enriched, integrated, social context for even the poorest homes in the most under-served areas. Implementing CBR, however, requires a large-scale dissemination of knowledge to individuals with little formal education. Thus, in 1989, WHO published a training manual, Training in the Community for People with Disabilities, that offers a simple, demystified set of essential rehabilitation skills such as mobility training, behavior modification methods, and assessment methods. Its materials have been fitted for specific locales. In Jamaica and Vietnam, CBR has emerged as the most promising approach to supports delivery. In Jamaica, CBR workers are employed on a volunteer and paid basis by a private, charity-supported, non-profit agency called the 3D Project. Services are limited to the parishes (regional districts) served by 3D. Most CBR workers are mothers of children with disabilities. The value of CBR is as rooted in the psychological and emotional bonds between the community worker and family members as in the interventions practiced. In fact, volunteers with less formal education are preferred over professionals by most families, as many volunteers already have working relationships with consumers. Training at 3D is intensive and prepares workers to be “all-rounders”— family trainers, health workers, assistant teachers and community organizers.

 In Vietnam, CBR has been integrated into the country’s primary health care system. Local nurses, assistant teachers and volunteers are trained and assigned to communes. They conduct house-to-house surveys to identify people with disabilities. As several generations will often live under one roof, grandparents, parents, siblings, relatives or close neighbors are recruited as CBR workers. Vietnam as a society is also very literate, so the WHO training manual has been disseminated widely.

Reaching Up and CUNY have begun an exchange program that provides funds for DSPs in its Kennedy Fellows Program to visit CBR programs in Jamaica and Vietnam, and internships for CBR workers to work and receive training at agencies in New York City. In NYC, where Caribbean Americans represent a growing part of the workforce and those receiving services, the Jamaica exchange has helped U.S. agencies provide more culturally competent services. The Vietnam exchange focused on training personnel to work with people with cerebral palsy, an emerging disability in Southeast Asia, and physical disabilities caused by land mines. These training opportunities are viewed as enhancements of their existing CBR programs.

The CBR focus on natural supports has much to offer the Western “institutional,” “community-based,” and “independent living” models of delivery. With the opportunity to build service delivery models anew, developing countries can demonstrate for DSPs in the U.S. what natural supports look like from the ground up. In turn, CBR workers can profit from the successes and failures of the West. Through ongoing dialogue, we will all benefit from the most promising international developments.