How do home and community based services change long-term care?

The relationship between Public Administration and the people is one that requires legitimacy and compromise in order to solve complex problems. Individuals with intellectual and developmental disabilities (IDD) and their families during the last fifty years have put forth an agenda that calls for the advancement of rights for the disabled and more integration into the larger society. In this arena, government, with post civil rights legislation like the 1990 Americans with Disabilities Act (ADA), plays a huge role in promoting social awareness and bringing down barriers of stigmatization, understanding, and access. This struggle is fought on many fronts. A significant part of the effort focuses on moving the locus of long-term care of the disabled, including the IDD population, from an institutional setting to the least restrictive setting that will foster social ties and integration. Since the early 1980s as part of this effort to deinstitutionalize the disabled, legislation at both the federal and state level has supported and incentivized the creation of Home and Community Based Service (HCBS) programs. HCBS waivers, as they are typically called, are also promoted as a means of containing government expenditures for long-term care. However, the effectiveness of these waivers is poorly understood. The critical questions being - Do HCBS waivers promote and create an environment that increases awareness of the needs of IDD individuals? Do the programs help reduce stigmatization, promote understanding, and increase access to services and activities that foster social interaction? Or, do HCBS waivers create a new "iron cage" where the intellectually or developmentally disabled are once again relegated to existing as second class citizens? In this research, programs are mapped and then evaluated to paint a better picture of how HCBS waivers change long-term care.