With President Joe Biden’s $3.5 trillion plan to expand the nation’s social safety net being chopped, disability advocates are fighting to keep a massive investment in Medicaid waivers alive.

Biden acknowledged this week that his spending plan would be slashed by at least a trillion dollars after Democrats were unable to secure enough support to pass the measure.

“Look, my objective is to get everything that I campaigned on passed eventually. It won’t all happen at once,” Biden said.

Advertisement - Continue Reading Below

The plan includes Biden’s proposal earlier this year to invest $400 billion in Medicaid home and community-based services. The money would go toward two major undertakings — getting people with disabilities off of waiting lists for Medicaid waiver services and shoring up the workforce of direct support professionals.

Already, the U.S. House of Representatives cut spending on the home and community-based services proposal in what’s known as the reconciliation bill by more than half to $190 billion. Advocates said that number would be inadequate to increase access to services and address workforce issues and they were pressing for more. But now they fear that funding for home and community-based services could get scrapped from the bill altogether.

“We are still pushing for the full $400 (billion) but know it will be cut. I am very worried about it being cut out entirely,” said Kim Musheno, vice president of public policy at the Autism Society of America. “With almost 1 million on waiting lists nationwide, we need to keep up the pressure on senators about the importance of building the infrastructure for home and community-based services.”

On Wednesday, 15 people with disabilities with the disability rights group ADAPT were arrested outside the Hart Senate Office Building on Capitol Hill while trying to meet with Sens. Joe Manchin of West Virginia and Kyrsten Sinema of Arizona, two centrist Democrats who have said they would not support the bill at its original size.

And, a coalition of 16 disability, aging and caregiver organizations held a 24-hour vigil this week outside the Capitol where they read stories about people’s experiences with home and community-based services.

“The vigil is to impress upon Congress that HCBS and affordable, accessible housing should not be political fodder because the lives and freedom of hundreds of thousands of older and disabled people quite literally depend on these two programs,” said Marsha Katz, a member of ADAPT.

Groups including The Arc, the National Down Syndrome Congress and the Autistic Self Advocacy Network have put out action alerts in recent days calling on their members to lobby Congress to keep money for home and community-based services in the bill.

Shoshana Marin, a spokeswoman for Sen. Bob Casey, D-Pa., the main backer of the home and community-based services proposal, said the senator is working to get as much money as he can for the program.

“The United States is in the midst of a caregiving crisis and we have a once-in-a-generation opportunity to solve it,” Casey said in a statement to Disability Scoop. “We owe it to every American who needs these services now, as well as all who will need care in the future, to fully fund this policy.”