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The Hill
3 days ago
- Health
- The Hill
‘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.
Yahoo
14-05-2025
- Health
- Yahoo
Uproar as disability rights protesters in wheelchairs dragged out of House Medicaid meeting: ‘You're going to kill me!'
Disability rights protesters in wheelchairs clashed with Republican lawmakers Tuesday as they sought to discuss and debate their sprawling legislation on Medicaid, which led to police dragging advocates out. The House Committee on Energy and Commerce, which governs Medicaid, began its 'mark up' for its part of the legislation that Republicans have taken to calling 'One Big, Beautiful Bill.' At one point, one advocate shouted at Republican lawmakers saying: 'You will kill me!' As Capitol Police escorted the protester out, she shouted: 'Bulls***! Liar!' Throughout the hearing disability rights activists interrupted discussions to protest the cuts. Under the House Budget resolution that passed earlier this year, the House has to find $1.5 trillion in spending reductions to unlock $4.5 trillion worth of tax cuts. If Republicans fail to cut $2 trillion worth of spending, the amount of money left for tax cuts will be reduced by the difference between $2 trillion and the final number of savings. Republicans claimed throughout the hearing that the legislation would not hurt people with disabilities. Under the bill, able-bodied adults without dependents must engage in at least 80 hours of either work, community service or education to be eligible for Medicaid. Republican Rep. Gary Palmer of Alabama pushed back against accusations that people with disabilities would lose their Medicaid coverage. 'The people who are legally eligible for Medicaid are not going to lose their Medicaid,' he insisted. 'We've all got family members, friends, we've got people in our districts, we all know these stories, people that are depending on Medicaid, and you will not lose your Medicaid.' But the protester interrupted Palmer, identifying herself as from Youngstown, Ohio and said that her drugs cost $10,000 a month. Republican Rep. Dan Crenshaw of Texas tried to tamp down criticism as people with disabilities expressed fear that they might lose their coverage. 'Here's my apology to you: I am sorry that people lie to you, I am sorry that so many people in the media and the left have lied to you,' he said. Many Republicans have said that the legislation would only cut coverage for able-bodied men, and specifically focused on undocumented immigrants. But disability advocates say that the legislation's requirements to have states determine if patients are eligible for Medicaid every six months could cause some to lose benefits. 'There are lots of people with disabilities ... who may not meet the specific social security definition, but who absolutely do have disabilities,' Katy Neas, the CEO of the Arc, told The Independent. Neas also said that the cuts to Medicaid could wind up causing states to cut optional programs such as Medicaid Home and Community-Based Services, which allows for people to stay in their homes rather than in nursing homes. Because it's an optional program, it has long waiting lists to apply, varying by state 'The choice is to go in an institution, or, more likely, people will just be put out, and their families will do the best they can for them, but isn't going to be sufficient for what they need,' she said. Rep. Alexandria Ocasio-Cortez of New York, who joined the committee this Congress, praised the activists for their protests. 'First and foremost, I think that they have demonstrated a tremendous amount of courage and bravery putting themselves on the line in order to defend Medicaid for people across the country, and the Affordable Care Act,' she told The Independent. She feared that the 'able-bodied' requirement might exclude some people who desperately need Medicaid. 'Does it include people with varying degrees of mental health diagnoses?' she asked. Ocasio-Cortez also pointed out that the legislation would also roll back a rule from the Biden administration requiring that a minimum number of staff work at nursing homes. 'This is definitely going to affect people who rely on nursing homes, the staffing that happens in nursing homes, this is all in the text of the bill, and on top of that, including people who are eligible and covered by Medicaid,' she said. During the hearing, Ocasio-Cortez pointed out how many people in areas – including those represented by Republicans – depend on Medicaid. Rep. Greg Landsman, a moderate Democrat from Ohio, questioned why people needed to be dragged out from the hearing. 'It seems strange that folks in wheelchairs would be arrested,' he said. 'Quite frankly, it's a life or death situation for them. I understand that they can't disrupt a proceeding, so they need to be removed. But why arrested?' Numerous House committees are engaged in marathon markups of their parts of the bill. Republicans, led by President Donald Trump, hope to pass the bill that ramps up spending for immigration enforcement at the Mexican border and boosts oil exploration while also extending the 2017 tax cuts that Trump signed in 2017. But the bill will face stiff opposition in the Senate, where many Republicans, including allies of the president, worry about steep cuts to Medicaid.
