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

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 people with disabilities across the country who use these services. .

The Home and Community Based Services Access Act, initially inserted in 2021 with the support of disability organizations, it would 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. Along with the Better Care Better Jobs legislation, wages for caregivers would be increased.

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

The legislation would also work to improve the stability, availability and quality of direct care providers, which could help boost the economy after a decades-long labor shortage crisis exacerbated by the coronavirus pandemic.

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

After the deinstitutionalization movement and the milestone olmstead case prohibiting the 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 age 65 and older and disabled people under age 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 institutional settings, such as nursing homes, but the Medicaid HCBS benefits are not required.

Optional waivers are available to allow individual states to provide Medicaid HCBS instead of only 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 services and supports policy at The Arc of the United States, a disability nonprofit, told HuffPost, as do the requirements. of eligibility. Many are placed on waiting lists for these services, and even if they receive them, they may not get the exact services they need. According to the 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 differing assessments of eligibility by states for waiting lists. and other factors.

“Potentially it’s more because a lot of people may have given up, they 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 care at home, and often they are in an institution and cannot participate in society in the way they would like.”

Maura Sullivan, a Massachusetts resident and single mother of two autistic young adults, has been affected by this shortage. Sullivan’s eldest son, Neil, 21, attends a residential school in Massachusetts and visits his house on the weekends, more often than usual due to staff shortages at the school. His youngest son, Tyler, 19, lives at home.

Her family was lucky to have had access to school services for their children during the pandemic, she said. But with the intensifying job crisis, in-home support outside of school hours hasn’t always been available, limiting their children’s ability to participate in the community.

“Direct support professionals have to learn…a whole new communication system (for my kids). They need to learn augmentative communication and nonverbal communication and through that take time to bond and build trust,” Sullivan told HuffPost.

“When that happens, and when someone is available to do it, it’s beautiful. And when they leave just a couple of months after finding out about all of that because they don’t get a living wage, it’s devastating and it’s very hard for my kids,” she said, stressing that increasing wages for HCBS workers is critical.

Sullivan is in the process of supporting Neil in the transition to HCBS for adults, which she describes as a “very scary time” due to staffing shortages. She is also concerned 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 that 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) get thousands of people back to services and supports,” he said. “So I look at this as a long-term issue that I know my kids are going to be right in the middle of as they get closer to adulthood.”

Goldfarb notes that states often view HCBS as additional, since they are already required in nursing homes. And, in the states where they are offered, the services are often not fully funded. Expanding Medicaid could 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 is an ongoing effort to try to provide access, and we are very excited about this one.”