‘Big beautiful bill’ will exact enormous costs on disabled individuals and their families

Until my son Julian was born with Down syndrome in 2009, I knew nothing about the ways that disabled Americans depended on programs like Medicaid to provide the kinds of services and supports they need to live full lives in their communities.  

As I got more involved in advocating for him, I learned about the troubling history of discrimination that consigned disabled Americans to a life of abuse, neglect and institutionalization. I also learned about courageous individuals who created the disability rights movement that catalyzed the legislation, regulations and Supreme Court cases that changed the lives of millions of Americans with disabilities. 

The more I learned, the prouder I became that we lived in a country that invested in people with even the most significant disabilities. It underscores a belief system that investing in everyone’s future exemplifies what it means to be American. Had my son been born in the early 1970s like I was, physicians would have encouraged us to institutionalize him, hiding him away from society. 

Sen. Robert F. Kennedy (D-N.Y.) visited the infamous Willowbrook State Developmental Center in New York in 1965 and, horrified by the inhumane conditions in which he found its residents living, famously described it as a “snake pit.” The subsequent lawsuit on behalf of Willowbrook residents accelerated the pace of deinstitutionalization, providing support for people with intellectual and developmental disabilities to live in their communities. 

The 1980s ushered in a new era of Medicaid Home and Community-Based Services (HCBS), which allow disabled individuals to receive supports and services in their own homes, living among their families, friends and neighbors — allowing them to be part of the fabric of their communities. People with disabilities would now have freedoms that the rest of us take for granted: to make choices, to be independent and to live life like everyone else. 

As the House budget reconciliation bill makes its way through the Senate, the GOP insists that people with disabilities will not be hurt by proposed Medicaid cuts — and, in fact, that the bill does not cut Medicaid but “strengthens” it. This is patently false. Despite claims that this bill only focuses on “waste, fraud, and abuse,” the proposed cuts will devastate the nearly 7 million seniors and people with disabilities who receive these services through Medicaid waivers — as well the 700,000 people on waiting lists for these benefits. (The cuts would trigger reductions in Medicare amounting to about $490 billion over 10 years). 

In addition to the direct loss of federal funds from the largest cut in Medicaid history, there is a second and even more significant impact of the GOP bill that will further impair states’ ability to support disabled Americans. Under the legislation, states would have no choice but to drastically reduce or eliminate Medicaid HCBS. These critical services — personal care assistance, employment supports, transportation, day programs, home modifications and other services — help people with disabilities avoid being placed in institutions.

Without these services, people with disabilities would face a stark choice: have family members leave the workforce to provide them unpaid assistance or be placed in nursing homes, which are significantly more expensive than Medicaid HCBS. Home and Community-Based Services are cost effective because they reduce both the financial and human costs of institutionalization; proposed reductions in Medicaid would also slash funding for nursing homes. 

The devil is in the details of this bill. Lowering the federal share of payments to a state for Medicaid services significantly decreases the amount of funding that a state has available. Additionally, proposed limitations on provider taxes (which states levy on providers like hospitals and nursing homes) are more severe in the Senate bill, and new administrative requirements would decimate state Medicaid budgets that are critical for funding disability services. It’s a one-two punch: slashing federal funding while making it impossible for states to fill the gap. 

Imperfect as our system for supporting people with disabilities is, no other country has one. Supporting Americans like my son to live their lives as independently as possible is what makes this country great. Helping him to be an employee, a customer, a neighbor and a taxpayer requires investment by both state and federal partners. If the GOP budget plan is enacted, however, it will undermine decades of progress and devastate this system.  

Cutting short future opportunities for millions of disabled Americans will exact enormous financial costs to individuals and their families. But there are also moral costs. Disabled Americans are our friends, neighbors and family members who contribute to our communities and our lives. It is immoral to leave them behind on a quest to cut taxes for corporations and the wealthiest among us. Congress must take a wiser and more compassionate approach and stop its destruction of our country’s social safety net. My son’s future — and the futures of disabled Americans — hangs in the balance. 

Allison Wohl is the mother of a 15-year-old son with Down syndrome, whose diagnosis shifted her personal and professional focus to advocacy for the full inclusion of people with disabilities in every aspect of life. She has led two national disability advocacy organizations.