Democrats seek to expand access to home and community services for people with special needs

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.

First, the Access to Home and Community-Based Services Act was introduced in 2021, with the support of disability organizations, it will mandate the services as a Medicaid benefit and increase funding for them. It would also incentivize states to expand these programs and remove long waiting lists. Combined with the Better Care Better Jobs legislation, wages will increase for caregivers.

The bill was introduced by Sen. Bob Casey (D-Pa.) in the Senate and is co-sponsored by 16 other members of the Democratic caucus. Representative Debbie Dingell (D-Mich.) introduced the House version, sponsored by Rep. Jamaal Bowman (DN.Y.).

The legislation will also work to improve the stability, availability and quality of direct care providers, which could help stimulate the economy after labor shortage crisis for decades exacerbated by the coronavirus pandemic.

The bills arrive the same week as President Joe Biden’s proposed budget, which would distribute $150 billion for Medicaid HCBS over the next 10 years.

After the deinstitutionalization movement and the milestone Olmsted case that prohibits the segregation 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 institutions.

According to Kaiser Foundation, most people age 65 and older and people with disabilities under 65 have Medicare, but it doesn’t cover most long-term supports and services. Medicaid is required to cover long-term care and services in institutions, such as nursing homes, but Medicaid HCBS benefits are not mandatory.

Optional waivers are available to allow individual states to provide Medicaid HCBS instead of exclusively offering long-term care services in institutional settings, along with other benefits.

Waivers and programs differ from state to state, David Goldfarb, director of long-term support policy and services at the nonprofit The Arc of the United States, 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. According to Kaiser Foundation656,000 people in the US were on waiting lists 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 potentially more because a lot of people may have dropped out, may 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 to be cared for at home and are often in an institution and unable to participate in society as they would like.”

Maura Sullivan, a Massachusetts resident and single mother of two autistic young adults, has been affected by these deficiencies. Sullivan’s oldest son, Neil, 21, attends a residential school in Massachusetts and visits home on the weekend, more often than usual because of staff shortages at the school. Her youngest son, Tyler, 19, lives at home.

Her family was lucky to have access to school services for her children during the pandemic, she said. But with the labor crisis deepening, support at home outside of school hours was consistently unavailable, which limited her sons’ abilities to participate in the community.

“Direct support professionals need 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 that happens, and when there’s someone available to do it, it’s beautiful. And when they leave just a few months after learning all of this because they’re not getting a living wage, it’s devastating and it’s so hard on my sons,” she said, stressing that raising pay for HCBS workers is critical.

Sullivan is in the process of supporting Neil in the transition to adult HCBS, which she describes as a “very scary time” due to staff shortages. She also worries 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 in her area have closed and community services and other opportunities have long waiting lists.

“Even if we raise rates now, it will take time to reopen 20-plus day programs that have been closed and consolidated here in Massachusetts [and] to get thousands of people back into services and support,” he said. “So I look at it as such a long-term problem that I know my sons will be right in the middle of as they grow up.”

Goldfarb notes that states often see HCBS as an add-on since they are already mandated in nursing homes. And, in states where they are offered, services are often not fully funded. Expanding Medicaid may be difficult with today’s divided Congress, Goldfarb said, adding that Republicans are focused on not raising the debt ceiling.

“This is very much a long-term project to work on,” Goldfarb said. “There’s an ongoing effort to try to provide access, and we’re really excited about that.”

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