care has been entrusted to many well-intentioned guardians. Neglect is not so much the issue as the potential for inconsistency, lack of continuity, and, to some degree, shortsightedness. Without coherence and coordination in the planning and provision of services, progress against this societal and public health problem will be impeded.
In its 1986 report Toward Independence, the National Council on the Handicapped (now the National Council on Disability) criticized the "complexities, inconsistencies, and fragmentation in the various federal laws that affect Americans with disabilities." In public hearings convened by the council, people with disabling conditions stated that "many programs do not mesh well with other available services, and that too often the service delivery system exhibits gaps, inconsistencies, and inequities" (National Council on the Handicapped, 1986).
These failings are not surprising, given the magnitude of the disability problem and the numerous public and private programs that have evolved to address it. At the federal level, about 50 programs spread across five cabinet-level departments offer services beneficial to people with disabling conditions. Coordination is not easily achieved in such a far-flung bureaucracy, and this difficulty is compounded by the formidable challenge of developing effective linkages among federal, state, and local agencies and between the public and private sectors. Failure to improve the fragmented collection of programs is a virtual guarantee that the large social and economic costs associated with disability will continue to grow.
Disability prevention requires an effective system of longitudinal care, an integrated service delivery network that is responsive to the health, social, housing, and personal care needs of people who have disabling conditions or who have a high risk of developing them. Many of the elements of the desired network are already in place but now operate in isolation rather than as complementary parts of an integrated whole. Achieving an integrated service delivery network that is easily negotiated by client populations will be difficult. As noted in earlier chapters, the lack of an adequate epidemiologic surveillance system for tracking the incidence and prevalence of disabling conditions in sufficient detail hampers planning, including identification of service delivery priorities.
The inadequacy of current surveillance efforts is but one of many impediments that limit the overall effectiveness of the hundreds of public and private programs related to disability. Rather than evaluate these individual programs, the committee describes some of the obstacles and opportunities that exist vis-à-vis an integrated national system of disability prevention. Many of the issues are not new, and some, such as inadequate access to health care for certain high-risk populations, are subsets of broader social concerns. Progress toward a comprehensive approach to disability prevention requires reckoning with the problems outlined below and capitalizing on opportunities.