Disability rights activists and caregiving advocates hold a vigil in October 2021 in front of the Capitol in Washington to urge Congress to approve additional funding for home and community-based services. (Larry French/Getty Images for The Arc of the United States)
With Republicans set to assume control in Washington, disability advocates are warning that proposals are in the works to drastically reshape Medicaid and undermine the nation’s system of home and community-based services.
President-elect Donald Trump and his allies on Capitol Hill are reportedly looking to squeeze money from Medicaid and other safety-net programs as they hunt for ways to offset the cost of extending tax cuts that were passed during his first term in office.
The moves are setting off alarm bells for disability advocates who have spent years pleading for increased investment in the long-struggling Medicaid home and community-based services program, which serves as the backbone of supports for people with developmental disabilities in this country.
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“We are extremely worried about Medicaid right now,” said Nicole Jorwic, chief of advocacy and campaigns at Caring Across Generations, an organization advocating for caregivers and people who rely on them. “We have already heard that Republican leadership is looking into ways to cut Medicaid, like they proposed in 2017 and again in the 2023 debt ceiling fight, with either draconian work requirements or block granting. Either would put at risk the whole home and community-based services infrastructure.”
Traditionally, the federal government has provided matching grants to states to help pay for the cost of care for anyone eligible for Medicaid, no matter how expensive.
However, during his first term, Trump and Republicans in Congress repeatedly pushed to transform Medicaid into a “per-capita cap” or “block grant” system. Under those models, the federal government would instead provide a fixed amount of money to states each year for the program.
Such a change would put pressure on states to limit spending and jeopardize funding for disability services, advocates say.
“If Congress were to block grant the Medicaid program, it would eliminate the minimum standards, leaving all decisions to states on eligibility criteria and scope and duration of services,” said Katy Neas, CEO of The Arc of the United States. “Such changes could force impossible choices. Would states decide to finance health and developmental services for children with disabilities or would they only finance nursing home care for older adults? Would states pay for services that allow an adult to live at home or would that adult be forced into a nursing home or hospital?”
The worries about Medicaid come as the program’s services for people with developmental disabilities are already under severe strain. Nearly 700,000 people across the country are on waiting lists for Medicaid waivers, which provide home and community-based services, according to The Arc. And, even those with waivers aren’t always able to access the services they need.
A survey of hundreds of disability service providers late last year found that pervasive staffing shortages had prompted 77% of providers to say that they were refusing or no longer accepting referrals and 44% to indicate that they had discontinued offerings. Over 60% reported that they were considering closing more programs or services.
“We are gearing up to defend Medicaid from any proposals that would cut services and supports,” said Kim Musheno, vice president of public policy at the Autism Society of America. “People with disabilities are suffering with a collapsing service system. The federal government should be boosting funding for Medicaid to build the direct care workforce, not (cutting) it.”
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