Deinstitutionalization and the Roots of Modern Disability Services
The concepts of normalization and social role valorization (see February’s post) helped to drive a more well-known movement that began in the U.S. in the 1980’s: deinstitutionalization. This was the process of moving individuals with disabilities from congregate or larger group settings into smaller, more home-like settings. It’s important to distinguish between the closing of mental health facilities and institutions for individuals with intellectual and developmental disabilities. Many mental health facilities were shut down without properly transitioning residents back to community life and adequate support to ensure successful re-entry. On the other hand, a great deal of planning went into transitioning adults with intellectual and developmental disabilities out of institutions, including advocacy work that ensured government funding that paid for institutional care could follow the person into the community and pay for the needed support there.
In many cases, both then and today, it costs much less to support individuals outside of institutional settings. State run institutions, and even some private run institutions, used Medicaid funding to cover the costs of services provided to residents. In addition to providing health insurance for low-income folks, Medicaid ensured that folks who could not afford nursing home or institutional care would have government assistance to pay for their services. With deinstitutionalization, states began to work with the Centers for Medicaid and Medicare (CMS) to develop their own programs where Medicaid could be billed for services provided outside of an institutional setting.
One of the major advocacy successes in this time period was the approval of the practice that “money follows the person,” meaning that leaving an institution didn’t result in the loss of all funding for supportive services. States requested waivers from CMS to allow them to bill for and provide services in an individual’s own home or community. The concept of remaining at home but having access to support was radical at the time. Previously, if you chose to not institutionalize your loved one, you would receive very limited support to meet their needs, no matter how complex their care was. The educational system was just beginning to figure out how to provide specialized services for children with disabilities in their local schools.
Today, Home and Community Based Services (HCBS) Waivers exist in all states, but funding for these programs varies from state to state. We are exceptionally privileged in Wisconsin to have no waiting lists for our waiver services. These services are a huge expense at the state and federal level, and we’ve seen efforts at both levels to place limitations on the funding spent for these services. There have even been widespread accusations of waste, fraud and (financial) abuse in these programs. It is critical that participants and families stay informed about the funding for HCBS waivers, because without them we would not have the resources needed to maintain a quality community integrated life.
– Stefanie Primm, Executive Director