Marisol Ramos, left, wipes excess makeup off her daughter Naomi’s cheek as the family gets ready to go on a shopping trip in 2017. Naomi has intellectual disability and spent years on a waiting list before finally receiving government-funded services. (Michael Bryant/The Philadelphia Inquirer/TNS)
A proposal in Congress would do away with Medicaid’s institutional bias and guarantee people with developmental disabilities access to services in the community.
Lawmakers in the U.S. Senate and the House of Representatives introduced a bill this month calling for home and community-based services to become a mandatory Medicaid benefit.
Currently, institutional care is covered by the federal-state health program for anyone who qualifies, but people with disabilities frequently must spend years on waiting lists for waivers in order to access supports in the community.
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Backers of the measure known as the HCBS Access Act say the bill would eliminate waiting lists for community-based services over time by increasing funding for the program, providing grants to states to expand their service capacity and taking other steps to bolster the workforce of caregivers who support people with disabilities.
“No one should have to sit for years on a waiting list to get the care they deserve, and caregivers shouldn’t have to live in poverty to do their critical work,” said Rep. Debbie Dingell, D-Mich., who introduced the legislation along with Sen. Bob Casey, D-Pa. “The HCBS Access Act would significantly improve our broken care system by clearing waiting lists and ensuring more people can access home care, strengthening wages and support for home care workers and providing family caregivers with much needed relief.”
The measure would not only help people with disabilities, but also their family members, many of whom have had to scale back work hours due to caregiving responsibilities, the lawmakers said.
The HCBS Access Act originated in 2021. That same year, the House passed a bill to invest $150 billion in the nation’s home and community-based services system in order to reduce waiting lists and strengthen the direct support professional workforce. But, the measure never reached a vote in the Senate.
More recently, President Joe Biden renewed calls for Congress to approve the $150 billion in funding over 10 years as part of his budget proposal this month.
Dingell and Casey, the lawmakers spearheading the latest proposal, also introduced a bill earlier this year called the “Better Care Better Jobs Act,” which would give states a permanent 10 percentage point increase in federal Medicaid matching funds for home and community-based services if they meet certain criteria.
The efforts to bolster home and community-based services come as providers across the nation face mounting pressure to sustain their offerings amid a shortage of direct support professionals and other challenges. A survey of providers across the country last fall found that over 60% have discontinued programs in the past year and over 80% have denied services to people with disabilities.
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