the ADA twenty years on: still fighting for home care

Tuesday was the 20th anniversary of the Americans with Disabilities Act.  The ADA is another product of 1960s and 70s movement building (an oral history and archive is fittingly hosted by UC Berkeley).  There's too much history to telescope into a short post, but the dimensions of what the movement was fighting against are shown in a few examples.  Through much of the 20th century it was legal for states to forceably sterilize disabled people.  Lack of curb cuts made basic movement impossible.  Policies pushed the vast majority of disabled people into institutions like nursing homes and made it impossible for them to use public benefits to live even semi-independently.

Whether someone is temporarily or permanently disabled, physically or developmentally, the protections created by the ADA are crucial to full participation in society. This became starkly clear to me after my father's massive stroke in October. I spent time with him at Magee Rehab Hospital, and being in a space focused on allowing people to be recognized as full, functional people, regardless how severely their bodies are compromised, was completely radical and sadly uncommon.

This work - and the struggle that gave rise to the ADA - continues.  We are waiting to appeal my father's initial Medicaid denial (we had to turn to Medicaid since even expensive private insurance categorically excludes any long term care).   Once it is approved, we'll need what are called 'waiver programs', which fund home and community-based care, to get him out of the nursing home and actually home.  Without these types of waiver programs, my father and others could be stuck indefinitely in institutional care, like nursing homes, where residents have little control over their lives.

And the situation is even starker for those with less resources than my family.  States have cut funding for home care programs to try to make up budget shortfalls, despite these programs costing much less than nursing homes.  Proposed legislation - the Community Choice Act - would help mandate that states provide a choice to live at home with support for anyone who qualifies for nursing home benefits, but doesn't yet have the votes to pass.  This one local news story, about a man moving into his own apartment for the first time, shows how huge it is to have the chance to live independently.  If you want to be part of making this kind of systemic and individual change over the next twenty years, please think about donating to the Disability Rights Network of PA.

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