Democrats in the House and Senate reintroduced legislation this week that would expand access to home- and community-based services (HCBS) and address barriers faced by millions of disabled people nationwide who use these services.
The Home and Community Based Services Access Act, initially introduced in 2021 with the support of disability organizations, would mandate the services as a Medicaid benefit and increase funding for them. It would also incentivize states to expand these programs and eliminate long waitlists. In conjunction with the Better Care Better Jobs legislation, wages would be increased for care givers.
The bill was introduced by Sen. Bob Casey (D-Pa.) in the Senate and co-sponsored by 16 other members of the Democratic caucus. Rep. Debbie Dingell (D-Mich.) introduced the House version, which is co-sponsored by Rep. Jamaal Bowman (D-N.Y.).
The legislation would also work toward improving the stability, availability and quality of direct care providers, which could help boost the economy after a decades-long workforce shortage crisis exacerbated by the coronavirus pandemic.
The bills arrive in the same week as President Joe Biden’s proposed budget, which would allocate $150 billion for Medicaid HCBS over the next 10 years.
Following the deinstitutionalization movement and the landmark Olmstead case barring segregation of disabled people from community life, HCBS provided support to disabled people that allows them to live in their communities rather than in institutional settings.
According to the Kaiser Foundation, most people 65 and older and disabled people younger than 65 have Medicare, but it doesn’t cover most long-term support and services. Medicaid is required to cover long-term care and services in institutional settings, such as nursing homes, but the Medicaid HCBS benefits are not mandatory.
Optional waivers are available to allow individual states to provide Medicaid HCBS rather than solely offering long-term care services in institutional settings, along with other benefits.
The waivers and programs differ state by state, David Goldfarb, director of long-term supports and services policy at disability nonprofit The Arc of the United States, told HuffPost, as do eligibility requirements. Many are placed on waitlists for these services, and, even if they do receive them, they might not get the exact services they need. According to the Kaiser Foundation, 656,000 people in the U.S. were on waiting lists for services in 2021, although the foundation notes that data is an “incomplete measure of unmet need” due to states’ differing eligibility screenings for waitlists and other factors.
“It’s potentially more because many people may have given up, they may be in an institution,” Goldfarb said. “There’s likely more people that would benefit if we ended these waitlists. But hundreds of thousands of people want to receive care at home, and they are often in an institution and not able to participate in society the way they’d like to.”
Maura Sullivan, a Massachusetts resident and single mom of two autistic young adults, has been affected by these shortages. Sullivan’s eldest son, Neil, 21, attends a residential school in Massachusetts and visits home on the weekend, more often than usual due to staffing shortages at the school. Her younger son, Tyler, 19, lives at home.
Her family was lucky to have had access to school-based services for her kids during the pandemic, she said. But with the intensifying workforce crisis, home support outside of school hours has not been consistently available, which has limited her sons’ abilities to be involved in the community.
“Direct-support professionals have to learn … a whole new communication system [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 that, it’s beautiful. And when they leave just a couple of months after learning all of that because they don’t get a living wage, it’s devastating, and it’s so hard on my sons,” she said, emphasizing that increasing 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” because of staff shortages. She also worries for her younger son, who will likely live at home for the foreseeable future and might not have access to day programs and community services. Sullivan said she’s concerned because many of the programs have closed in their area, and community services and other opportunities have long waitlists.
“Even if we raise rates now, it will take time to reopen 20-plus day programs that have closed and consolidated here in Massachusetts [and] to get thousands of individuals back into services and support,” she said. “So I see this as such a long term-problem that I know my sons will be right in the middle of as they’re moving into adulthood.”
Goldfarb notes that states often view HCBS as extra since they are already mandated in nursing homes. And, in states where they are offered, the services often aren’t fully funded. Expanding Medicaid might be difficult with the current divided Congress, Goldfarb said, adding that Republicans are focusing on not raising the debt ceiling.
“This is very much a long-term project to work on,” Goldfarb said. “There’s a continuing effort to try to provide access, and we’re really excited about this one.”