My mother told me if you live long enough you see history repeat itself. I never thought it would apply to the government-funded services that support adults with intellectual and developmental disabilities to live independently.
More than 60 years ago, my mother was part of the first wave of disability rights advocates who rode buses to Albany to ensure my brother, Richard, had the right to schooling. Scrolling through my Facebook feed recently, I saw posts from concerned family members of people with intellectual and developmental disabilities sharing that the latest COVID-19 relief bill, the Republican HEALS Act, might not include dedicated Medicaid funding for home- and community-based services.
The underlying fear is that no funding may lead to increased social isolation and, at worst, the reinstitutionalization of adults with developmental disabilities. Coming out of quarantine, the typical population experienced the frustration that comes from not being able to see your family, leave your house, or participate in activities you love. For people with disabilities, the risk of social isolation is rooted in their invisibility, which often leads to budget cuts or lack of investment in essential services.
I am the board chair of the AHRC Nassau County chapter of The Arc New York, but I’m also a brother sitting at my kitchen table worried about what this funding oversight might mean for my brother.
The invisibility of disability can be chilling in its starkness. When people were first able to dine outside amid the coronavirus pandemic, I still couldn’t visit my brother because the reopening phase hadn’t included group homes. But for Richard it not only meant no visitors but also not leaving his group home to participate in the reopening of Long Island.
Now, we’re fighting to maintain the independence that families fought so hard to achieve. Medicaid funding for home- and community-based services are long-term supports; limited funding means waiting lists around the country to enroll. Direct care wages remain stagnant with staff attrition on the rise. Recently, budget cuts have been felt more and more deeply.
There remains a lack of personal protective equipment for direct-support professionals who help people with disabilities in their homes and in the community. People with disabilities, who are claimed as dependents, have not received economic impact payments — despite their participation in the community. Also lacking is paid leave for family caregivers who balance work and caregiving responsibilities.
What this has meant is less independence for people with disabilities, like my brother, during quarantine. Without inclusion in current legislation, it also means less independence over at least the next two years.
Every day counts for my brother, as it does for you and your loved ones. My mother fought similar battles from her kitchen table. I urge you to go to yours and invite friends and family in states with GOP senators to urge them to include provisions for disabled Americans in the legislation. Families helping families is how change has been and always will be made.
Paul Giordano is chairman of the board of the AHRC Nassau County chapter of The Arc New York.