An ambitious plan to shore up Medicaid home and community-based services nationwide with the largest investment ever in the program has been whittled down to nothing.

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

“These investments will help hundreds of thousands of Americans finally obtain the long-term services and support they need, while creating new jobs and offering caregiving workers a long-overdue raise, stronger benefits, and an opportunity to organize or join a union and collectively bargain,” the White House said when the proposal was first unveiled in the spring of 2021.

Advertisement - Continue Reading Below

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

Since then, however, the legislation suffered repeated fits and starts 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 includes no funding for home and community-based services.

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

The final blow comes as disability services are languishing nationwide, with pressures stemming from the COVID-19 pandemic, a long-simmering staffing crisis and other challenges forcing providers to close group homes and shutter 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 nation. “We are concerned that absent an additional investment in the HCBS program, individuals with I/DD continue to be at risk of losing access to services or remaining on states’ growing HCBS waiting lists, waiting years and 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 in play during this legislative process there is broad popular support for HCBS funding, and look forward to working with members of Congress on legislation to strengthen supports for individuals with intellectual and developmental disabilities,” Aguilar said.

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.