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 nationwide who use these services.
The Home and Community Services Access Act, originally introduced in 2021 with the support of disability organizations, will order these services as a Medicaid benefit and increase funding for them. It will also incentivize the country to expand the program and eliminate it long waiting list. In conjunction with the Better Care Better Jobs legislation, wages will increase for caregivers.
The bill was initiated by Sen. Bob Casey (D-Pa.) in the Senate and sponsored by 16 other members of the Democratic caucus. Rep. Debbie Dingell (D-Mich.) introduced the House version, which is sponsored by Rep. Jamaal Bowman (DN.Y.).
The legislation will also improve the stability, availability and quality of direct care providers, which can help improve the economy after a a decades-long labor shortage crisis exacerbated by the coronavirus pandemic.
The bill comes the same week as President Joe Biden’s proposed budget, which he plans to implement allocation $150 billion for Medicaid HCBS over the next 10 years.
After the deinstitutionalization movement and landmarks Olmstead cases prevent the separation of disabled people from community life, HCBS provides support for disabled people that allow them to live in the community instead of in an institutional setting.
According to Kaiser Foundation, most people 65 and older and disabled younger than 65 have Medicare, but it does not cover most long-term support and services. Medicaid is required to cover long-term care and services in institutional settings, such as nursing homes, however Medicaid HCBS benefits are not mandatory.
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.
Exemptions and programs vary by state, David Goldfarb, director of long-term support and services policy at disability 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 receive them, they may not get the exact services they need. According to Kaiser Foundation656,000 people in the US are on the waiting list for services in 2021, although the foundation notes that the data is an “incomplete measure of unmet need” due to the different eligibility screening of states for waiting lists and other factors.
“It’s potentially more because a lot of people may have given up, they may be in institutions,” Goldfarb said. “There are more people who will benefit if we end this waiting list. But hundreds of thousands of people want to receive care at home, and often they are in institutions and cannot participate in society as they would like.
Maura Sullivan, a Massachusetts resident and single mother of two autistic adults, has been affected by the shortage. Sullivan’s oldest son, Neil, 21, attends a residential school in Massachusetts and comes home on weekends, more often than usual because of staff shortages at the school. Their youngest son, Tyler, 19, lives at home.
Families are fortunate to have access to school-based services for their children during the pandemic, he said. But with the growing labor crisis, support at home outside of school hours has not been consistently available, limiting her son’s ability to participate in the community.
“Direct support professionals need to learn … a new communication system [for my sons]. They need to learn augmentative communication and nonverbal communication, and, through that, take time to bond and develop trust,” Sullivan told HuffPost.
“If that happens, and if someone can do it, it’s great. And when they leave just a few months after learning everything because they don’t get a salary, it’s devastating, and it’s very difficult for my children,” he said, stressing that the salary increase for HCBS workers is critical.
Sullivan is in the process of supporting Neil in the transition to adult HCBS, which he described as “a very scary time” because of staff shortages. She also worries about her young son, who will be living at home in the future and may not have access to day programs and community services. Sullivan said she is concerned that many programs are closing in her area, and that community services and other opportunities have long waiting lists.
“Even if we raise rates now, it will take time to reopen the 20-day program that has been closed and consolidate it in Massachusetts. [and] to get thousands of individuals back to services and support,” he said. “So I see this as a long-term problem that I know my children will be in the middle of when they grow up.”
Goldfarb noted that states often see HCBS as a supplement because it is already mandated in nursing homes. And, in the countries where they are offered, these services are often not fully funded. Expanding Medicaid may 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 we can do,” Goldfarb said. “There’s an ongoing effort to try to provide access, and we’re very happy about that.”