Recent Medicaid reforms, while significant, do not seem to affect community-based programs for individuals with disabilities. Instead, the focus seems to be on ineligible recipients, issues of administrative fraud, and, interestingly, healthy adults who may choose not to work.
Still, there’s a pressing need to enhance support for people with disabilities, encouraging them to move, stay, and thrive in their communities.
As someone who’s spent nearly fifty years advocating for services that aim to liberate individuals with disabilities from institutional settings, I can assert that institutional care is often less effective—and, well, quite costly. There’s a more humane and practical way to allocate funds toward community programs.
When President Ronald Reagan approved the 1981 Omnibus Budget Settlement Act, it marked a shift. The federal government began to acknowledge housing and community-based care as viable alternatives to pricey institutional care. Sure, the intent was to save funds, but it also unexpectedly led to innovative approaches to managing services rather than just billing for them.
This broad change has enabled states like New Jersey and New York to close several facilities, allowing many to rejoin their communities. These reforms have also inspired numerous lawsuits addressing institutional abuses, leading to a quicker transition to community placements where individuals with disabilities can lead fulfilling lives in their own homes.
Reflecting on my time in New Jersey, the contrasts are striking. Back in 1981, the facility I worked at housed about 9,000 people. Fast forward to today, and that number has dwindled to around 3,000 across five remaining institutions, with many also placed in private nursing homes. Each year, the state incurs costs of about $450,000 per person in these settings.
Recently, I visited state institutions in Corpus Christi, El Paso, and Dallas. A majority of Texas’s funding is still directed toward institutional care, with costs nearing $500,000 per individual annually. In contrast, individuals receiving community services like host homes have expenses closer to $54,000 a year under Medicaid. Thankfully, Texas is seeing a slowdown in institutionalization, and there’s been an uptick in people transitioning back into communities, a marked improvement.
However, local lawmakers seem inclined to maintain these institutions, often swayed by their status as major employers in the district, which complicates the push for meaningful closure. It’s a tough call, no doubt, but it takes political will to shift toward what’s right—preserving institutions for vulnerable populations doesn’t lead to a better quality of life for those individuals.
Community-based programs are vital for supporting families providing care at home, allowing people with disabilities to nurture connections to the places they consider home.
At this juncture, the federal government needs to collaborate with states and service providers, ensuring that the most vulnerable individuals get quality care. We’ve made some progress, but there’s still an opportunity for leadership in this area. It’s crucial that we allow individuals to receive care from family and friends while remaining in supportive communities, rather than forcing them into agencies.
There’s a call for Trump and Congress to make these changes happen, hopefully spurring a reform in the outdated practices surrounding care for people with disabilities.
