Environmental modification and adaptive assistance are essential components of a prevention program focused on developmental disability.
Organizations such as local Parent to Parent groups, Associations of Retarded Citizens groups, United Cerebral Palsy Associations, and Independent Living Centers provide community-based peer support for individuals with disabling conditions and their families. These groups provide an invaluable resource for emotional support and information. For example, support groups are the major source of referrals to professionals who specialize in care for persons with disabling conditions, and to systems of health care reimbursement. In addition, support groups are excellent sources of advice on career alternatives, training, and job opportunities.
Peer support groups also play a major advocacy role. Through the concerted efforts of several such groups, legislation has been adopted to improve access to public buildings and transportation. These groups also have been instrumental in developing many state-based disability prevention programs.
Persons with disabling conditions, their families, personal attendants, and advocates need improved access to information and training in disability prevention. In particular, there is a need for enhanced disability advocacy, information, and support in many rural communities where physical distances limit group interactions.
Current efforts in the prevention of developmental disabilities as described above provide numerous opportunities. There is much room for improvement, however. Some of the opportunities and needs that have been identified are described below, organized into five categories: organization and coordination, surveillance and epidemiology, research, access to care and preventive services, and professional education.
The vast array of disability-related activities in both the public and private sectors is evidence in itself of the need for coordination. There are numerous examples of duplicate and underutilized services. Efforts are under way at national and state levels to better coordinate prevention programs. Some of these are briefly described below.