Opinion: People as Pendulums

Age of Autism is reprinting this article by Tamie Hopp with permission. To view the original, please visit NPQ, The Non-profit Quarterly.  If you have a child with autism or another disability, we suggest you join VOR (Vee-Oh-Are) an AofA sponsor and one of the only advocacy groups fighting for INDIVIDUALIZED housing and adult care.  There are self-advocates and others who know nothing about the needs of our loved ones with autism who are seeking to deny choice. Learn more at the VOR site.

In 1965, then-Senator Robert Kennedy toured the Willowbrook institution in New York State and offered this grim description of the individuals residing in the overcrowded facility: "[They are] living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo." 

The atrocities of Willowbrook ushered in a generation of advocates, nonprofit organizations, providers, and professionals who successfully pushed for massive reform, beginning in 1971 with the development of Medicaid Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR) [later renamed as ICFs for Individuals with Intellectual Disabilities (ICFs/IID)].

Families and advocates alike applauded this infusion of federal funding, licensing and oversight for a program specifically designed to meet the needs of individuals with intellectual and developmental disabilities (I/DD).

Still, as the ICF/IID program grew, so did calls for housing alternatives. Critics emerged, claiming that the ICF/IID federal standards of care promoted a non-individualized, inefficient model of care, and, due to federal financing incentives, discouraged states from developing alternate service options.  In 1981 Congress responded by providing for small (4-15 person) ICFs/IID and a Medicaid Home and Community-Based Services (HCBS) waiver, to allow states to “waive” certain ICF/IID requirements.

These early reforms were quite properly motivated by the need for a system of care and supports that responded to the very individualized and diverse needs of the entire population of people with I/DD.  These reforms, however, also set the stage for decades of ongoing deinstitutionalization, resulting in the elimination of specialized housing, employment and education options for people with I/DD, leaving some to question the price of “progress.”