An ambitious Biden administration plan to invest $400 billion to transform the nation’s home and community-based services and get people with disabilities off waiting lists is in jeopardy, advocates say.

The proposal, which came as part of President Joe Biden’s American Jobs Plan in March, aims to bring relief to many people with disabilities who are waiting to access services while bolstering the workforce of direct support professionals.

Last month, Democrats in Congress introduced a bill called the Better Care Better Jobs Act, which is intended to serve as the legislative framework for the home and community-based services plan. The legislation would offer states a 10-percentage point increase in the matching funds they receive from the federal government for home and community-based services if they meet certain requirements. It also includes incentives for states to strengthen the direct care workforce.

Now Senate Democrats are working to make good on the plan. They’re currently piecing together the details of a $3.5 trillion reconciliation bill, which is expected to incorporate the Better Care Better Jobs Act.

But, with numerous competing priorities in the massive spending package, disability advocates say they’re alarmed by rumors that the amount allocated to Medicaid home and community-based services could be cut to $150 billion, less than half the $400 billion Biden called for.

A lower figure is simply inadequate to address the entrenched issues in the services system for people with developmental disabilities, said Nicole Jorwic, senior director of public policy at The Arc.

“I do think that home and community-based services funding will be in the package, but I have concerns that the level of funding won’t be enough to fund effective policy,” she said. “We know that in order to fundamentally solve these problems — to clear the waiting list and get the workforce over $15 per hour — that would cost more than the $400 billion.”

Organizations including The Arc, the Autism Society and the National Down Syndrome Congress have been urging their members to contact lawmakers to support the funding level that was initially proposed. And, more than 400 disability service providers from across the country signed on to a letter to House and Senate leaders pushing for the full $400 billion to be included.

“This level of investment is essential for building a sustainable HCBS infrastructure that can once and for all begin addressing the magnitude of unmet need in our communities,” reads the letter organized by the American Network of Community Options and Resources, or ANCOR, which represents disability service providers across the nation.

The ANCOR letter also seeks to dispel concerns that adding money for community-based services would detract from other options, noting that under the proposed bill “people with disabilities being supported in congregate care settings would not see any of their existing services diminished.”

Kim Musheno, vice president of public policy at the Autism Society, said the extra funding for community-based services is long overdue and bold action is needed.

“The home and community-based infrastructure has been underfunded and neglected for too long,” she said. “Caregivers are exhausted. Waiting lists are so long that some parents are literally afraid to die for fear of what might happen to their loved ones.”

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.