Congress emphasizes helping struggling disability service system

Disability rights activists and care advocates are holding a vigil in October 2021 outside the Washington Capitol to urge Congress to approve additional funding for home and community services. (Larry French/Getty Images for The Arc of the United States)

An ambitious plan to strengthen Medicaid home and community services nationwide with the biggest investment ever in the program has been undone.

After more than a year of negotiations, President Joe Biden is expected to sign a reconciliation bill on tackling climate change and health care costs. The legislation now known as the Cut Inflation Act is the latest iteration of what was originally intended to be a much larger measure encompassing Biden’s $400 billion Build Back Better program. spending on home and community services.

“These investments will finally help hundreds of thousands of Americans get the services and long-term support they need, while creating new jobs and providing care workers with a long-awaited raise, greater benefits and the possibility of organizing or joining a trade union and collectively. good deal,” the White House said when the proposal was first unveiled in the spring of 2021.

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Funding for home and community services was cut to $150 billion in a version of the bill passed by the U.S. House of Representatives last November. But even that lower figure represented a bigger investment than ever in the Medicaid system of services supporting people with disabilities.

Since then, however, the legislation has suffered repeated jolts as Democrats in the Senate struggled to muster enough support before a much more limited version passed the Senate and House last week. The resulting bill does not include any funding for home and community services.

“We are deeply disappointed that Congress is not seizing this historic opportunity to provide people with disabilities and their families with the services and supports they need to live as independently as possible,” said Bethany Lilly, Senior Director of public policies at the Arc.

The final blow comes as disability services languish nationwide, with pressures stemming from the COVID-19 pandemic, a long-simmering staffing crisis and other challenges forcing providers to close homes. groups and close programs.

“The state of I/DD services remains dire,” said Elise Aguilar, director of advocacy at the American Network of Community Options and Resources, or ANCOR, which represents disability service providers across the country. “We are concerned that without additional investment in the HCBS program, people with I/DD will continue to be at risk of losing access to services or remaining on growing state waiting lists. HCBS, to wait years, even decades, for services.

Despite the setback, advocates say the work they’ve done to rally support on Capitol Hill will continue.

“We are encouraged that outside of the specific dynamics at play during this legislative process, there is broad popular support for funding HCBS, and we look forward to working with members of Congress on legislation. aimed at strengthening supports for people with intellectual and developmental disabilities,” Aguilar said. .

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