The state of Wisconsin’s declining reliance on state-run centers for people with intellectual disabilities, including a steady decline in the number of people who receive long-term care and an effective freeze on new admissions, fits a national pattern.
Of the roughly 350 such facilities operating between 1960 and 2012, more than 200 have been closed, privatized or downsized to 15 or fewer residents, according to a report from the University of Minnesota.
Michigan Law School professor Samuel Bagenstos, a former U.S. Department of Justice attorney who played a role in court negotiations guaranteeing community-based services in Delaware and Georgia, has written that an alliance between disability advocates and fiscal conservatives drove deinstitutionalization in the 1970s and 1980s.
The alliance, he noted, held together “just long enough” to move people out of expensive institutions, but began to break down once it came to investing in community services. He noted that advocates are now fighting to ensure and expand the availability of these supports.
In 1999, the U.S. Supreme Court found that segregating people with intellectual disabilities violated the Americans with Disabilities Act. It said that states must provide community-based services when appropriate.
“The overall direction that long-term supports are going nationally, internationally and in the state, is toward community-based supports,” said Beth Swedeen, executive director of the Wisconsin Board for People with Developmental Disabilities, a federally funded state board that helps people with developmental disabilities become independent and included in community life.
Swedeen said “overall, community settings are safer and healthier” as people rate their health, safety and happiness higher there than they do in institutions. She cites research showing that most people develop stronger daily living skills than those who remain institutionalized. She said the state should use public dollars “for what works best.”
But not everyone is convinced that deinstitutionalization is always the best policy. Nationally, the pushback against this trend has been led by VOR, an Illinois-based nonprofit group that advocates on behalf of people with developmental disabilities and their families.
Tamie Hopp, the group’s director of government relations and advocacy, notes that Medicaid rules say guardians for those with developmental disabilities must be “given the choice of either institutional or home and community-based services.”