President Joe Biden proposed a massive $400 billion investment in Medicaid home and community-based services earlier this year, but now Congress is considering less than half that amount.

Biden proposed the funding this spring as part of his American Jobs Plan in an effort to help many people with disabilities who are on waiting lists access services and address long-held problems like low pay and poor retention of direct support professionals.

“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 announced.

Now, Congress is working to make that plan a reality through a reconciliation bill that lawmakers are pushing through. But, legislation unveiled earlier this month from the U.S. House of Representatives’ Energy and Commerce Committee would allot just $190 billion for home and community-based services.

That’s simply not enough, disability advocates say.

“Given that funding for home and community-based services has been underfunded for decades, we need this provision to be fully funded,” said Kim Musheno, vice president of public policy at the Autism Society of America. “We have almost a million people waiting for services such as respite care, residential supports, supported employment, behavioral supports and other services paid for by Medicaid waiver services. These families are suffering. We fear that if this provision isn’t fully funded some states will not take it up, people will be left on these waiting lists, and the shortages in quality direct support professionals will deepen.”

Nicole Jorwic, senior director of public policy at The Arc, said advocates need to keep up the pressure on lawmakers to increase the investment in disability services before the reconciliation bill goes up for a vote in the full House, which is expected later this month.

“There are still opportunities for additional funding to be allocated before it is voted on by the full House, and that’s what advocates should be pushing for,” Jorwic said. “The funding level needs to stay close to the proposed $400 billion because you need substantial funding, more than $190 billion, to sufficiently address both the access to Medicaid home and community-based services and also raise wages and increase support for the direct care workforce.”

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