House and Senate Democrats this week reintroduced legislation that would expand access to home and community-based services (HCBS) and address barriers faced by millions of people with disabilities across the country who use these services.
The Law on Access to Housing and Community Services, initially PUT in 2021, with support from disability organizations, will mandate services as a Medicaid benefit and increase funding for them. It would also encourage states to do so expand these programs and remove long waiting lists. Combined with the Better Care Better Jobs legislation, wages would be increased for carers.
The bill was introduced by the senator. Bob Casey (D-Pa.) in the Senate and co-sponsored by 16 other members of the Democratic Party. Representative. Debbie Dingell (D-Mich.) introduced the House version, which is co-sponsored by Rep. Jamaal Bowman (DN.Y.).
The legislation would also help improve the stability, availability and quality of direct care providers, which could help stimulate the economy after a the decades-long crisis of labor shortages exacerbated by the coronavirus pandemic.
The bills come the same week as President Joe Biden’s proposed budget, which would have taken place to assign $150 billion for Medicaid HCBS over the next 10 years.
Following the deinstitutionalization movement and reference point Olmsted In the case of exclusion of people with disabilities from community life, HCBS has provided support to people with disabilities that allows them to live in their communities rather than in institutional settings.
Second Kaiser Foundation, most people over 65 and people with disabilities under 65 get Medicare, but it doesn’t cover most long-term care and services. Medicaid is required to cover long-term care and services in institutional settings such as nursing homes, but Medicaid HCBS benefits are not mandatory.
Optional waivers are available to allow individual states to provide Medicaid HCBS rather than exclusively providing institutional long-term care services along with other benefits.
Waivers and programs differ from state to state, David Goldfarb, policy director for long-term care and services at The Arc US, told HuffPost, as do eligibility requirements. Many are placed on waiting lists for these services, and even if they do receive them, they may not receive the exact services they need. Second Kaiser Foundation656,000 people in the United States were placed on a waiting list for services in 2021, though the foundation notes that the data is an “incomplete measure of unmet need” due to states’ differing eligibility checks for waiting lists and other factors.
“It’s possible more because a lot of people would have given up, they could be in an institution,” Goldfarb said. “There are probably more people who would benefit if we ended these waiting lists. But hundreds of thousands of people want home care and often find themselves in institutions and unable to participate in society as much as they would like.
Maura Sullivan, a Massachusetts resident and single mother of two autistic young adults, was stunned by these shortcomings. Sullivan’s oldest son, Neil, 21, attends a residential school in Massachusetts and comes home more often than usual on weekends because the school is understaffed. Her younger son, Tyler, 19, lives at home.
Her family was lucky to have access to school services for their children during the pandemic, she said. But as the workforce crisis intensified, support at home outside of school was consistently unavailable, limiting her children’s abilities to engage in the community.
“Direct support professionals have to learn… a whole new system of communication [for my sons]. They need to learn augmentative communication and nonverbal communication and through that, take the time to bond and develop trust,” Sullivan told HuffPost.
“When it happens and there’s someone available to do it, it’s nice. And when they leave just a few months after learning all of this because they’re not making minimum wage, it’s devastating and it’s so hard on my kids,” she said, noting that raising wages for HCBS workers is essential.
Sullivan is in the process of supporting Neil’s transition to HCBS for adults, which he describes as “a very scary time” due to the lack of staff. She is also worried about her youngest son, who will likely be living at home for the foreseeable future and may not have access to day programs and community services. Sullivan said she is concerned because many of the programs have closed in her area and community services and other opportunities have long waiting lists.
“Even if we raise rates now, it will take time to reopen the 20+ day programs that have been closed and consolidated here in Massachusetts. [and] to bring thousands back into services and support,” he said. “So I see this as such a long shot that I know my kids will be right in the thick of it when they get to adulthood.”
Goldfarb notes that states often consider supplemental HCBS because they are already mandated in nursing homes. And, in states where they are offered, services are often not fully funded. Expanding Medicaid could be difficult with the current divided Congress, Goldfarb said, adding that Republicans are focused on not raising the debt ceiling.
“This is a long-term project that needs to be worked on,” Goldfarb said. “There’s an ongoing effort to try to provide access, and we’re very excited about that.”
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