More than 500,000 Americans with intellectual and developmental disabilities currently await government funding for long-term care in their own homes.
The lists of people who need lifelong or long-term assistance to live independently in the community are long in dozens of states, and people often wait years to receive help with everyday tasks like cooking or getting around.
Oklahoma’s backlog of disability services had ballooned to more than 5,000 people before the state Legislature approved a $32.5 million budget increase last year to clear the state’s 13-year-long waiting list. The $32.5 million budget represents the largest budget increase in the history of the Oklahoma Department of Human Services.
Beth Scratchins, director of the state Department of Developmental Disabilities Services, which manages the wait list and is part of the state Department of Homeland Security, said the funding package comes as a result of “rapidly growing awareness.” The department hopes to eliminate the entire wait list within 18 to 24 months.
“Everybody took ownership of this issue and wanted to solve the problem and really help individuals and families,” Scratchins said. “With this historic budget allocation and investment in Oklahoma families, we feel like we can lead the nation in terms of working with individuals and families.”
WATCH: Oklahoma county officials recorded using racist slurs and discussing murder of journalist
Intellectual and developmental disability services are a lifeline for individuals and their families. These services include early intervention programs, behavioral therapy, speech therapy, occupational therapy, and other services that help people with disabilities.
Currently, 37 states, including Oklahoma, maintain waiting lists for waivers that fund Medicaid home- and community-based services as an alternative to institutionalized care facilities. These benefits are intended to help people with disabilities live and work in their communities. In some states, such as Oklahoma, community care is the only option, and the state closed its state-run facilities more than a decade ago.
In Oklahoma, DDS serves all individuals age 3 and older with a primary diagnosis of an intellectual or developmental disability (IDD), such as autism, cerebral palsy, or Down syndrome.
The exemptions include funding for a range of services, including housing, employment and rehabilitation services and supports, and are tailored to provide services appropriate to an individual’s needs.
The in-home assistance waivers allow children to receive up to $19,283 in services per year. Eligible adults can receive up to $28,914 in services per year. These waivers are not cash payment programs, but provide funding through agencies that contract with the Oklahoma State Department of Health.
Experts who spoke to PBS NewsHour suggest the issue highlights the urgent need for increased government funding for accessible, community-based care services that improve the quality of life for people with IDD. Without such measures, thousands of people will remain on waiting lists.
How do such backlogs arise?
Waiting lists are the result of decisions states make about which people to serve, what services to provide and what resources to put toward meeting the demand, said David Goldfarb, director of Arc of the United, a nonprofit that serves people with intellectual and developmental disabilities.
“I wish I could say we’re in a good situation, but the reality is we’re not.”
“These services are provided through Medicaid and are often underfunded across the board,” Goldfarb said. “I wish I could say things are going well, but the reality is they’re not. We’re facing workforce shortages. We’re facing potential funding cuts, and people aren’t getting the services they need.”
Goldfarb said states also have different approaches to managing wait lists, including prioritization and eligibility screening, making it difficult to compare wait times across states.
Medicaid is the primary source of funding available to many people with IDD to live and work in the community with their families. State and federal Medicaid combined provide more than 75% of funding for services to people with IDD nationwide, with families paying for the remainder.
How disability services are a lifeline
Oklahoma State Representative Erin Hefner understands the pressures Oklahoma parents face when they don’t have access to services.
Her 18-year-old son, William, has autism. Hefner said she’s heard from other parents who had to quit their jobs to care for their children with disabilities full time. As a single mother, Hefner couldn’t quit her job. Part of her campaign to run for Oklahoma State Representative in 2022 was to be a voice for families on IDD waiting lists in the state Legislature.
After waiting more than 10 years for services, Hefner was taken off the waiting list in January and became eligible for financial assistance to hire a caregiver to look after her son when she couldn’t.
Recently, William and his caregiver were working out together at a local gym when William had a seizure, fell and hit his head. The caregiver, whom both Hefner and his son credit with saving William’s life, helped William receive immediate medical attention.
“It’s a wonderful feeling to know I can trust someone to take care of my son,” Hefner said.
What states are doing to clear the backlog
Many states are working to put more funding into these programs to eliminate waiting lists for IDD services, while others are working to streamline the application process or recruit more professionals to work in these areas.
More than 14,400 people are waiting for Medicaid waivers in Virginia, including 3,199 who fall into the “priority 1” category and will need services within the next year, WRIC reported.
In 2018, there were approximately 30,000 people on the waiting list for IDD services in Louisiana. To emphasize community-based care, the state implemented a new system called Screening for Urgent Needs (SUN), which identifies individuals who need urgent or emergency services and provides them with the help they need. Those who did not meet the criteria were placed on a registry and screened periodically or upon request. By 2020, the waiting list had been completely eliminated.
Ohio’s waiting list for IDD services was about 69,000 people in 2018. But the following year, the state implemented a new assessment to reassess the wait list, which allowed it to identify individuals who did not meet the exemption criteria and instead offer them other Medicaid or state resources. These efforts helped Ohio reduce its wait list to about 2,000 people in 2021.
To cut wait times and give families more options, Texas has created a new program: Called the Texas Living at Home Program, it provides funding for people with IDD to live at home with the support of trained professionals.
While Oklahoma has allocated funds to services to eliminate its waiting list, wait times in neighboring Texas continue to grow. As of January 2022, the Texas Health and Human Services Commission has a waiting list of approximately 170,000 people.
Underfunding is a fundamental issue in the Texas health care system: The number of people eligible for Medicaid waivers in Texas has doubled since 2010, yet the Republican-led state legislature has only increased funding by 17 percent, according to a report in the Houston Chronicle.
This funding shortfall also affects caregivers: The Chronicle reported that caregivers in the state who care for disabled people make $8.10 an hour, the lowest in the country.
Other states are working to streamline the application process for IDD services. California now allows families to apply for services through an online portal, aiming to simplify the process and make it more accessible.
In his February State of the Union address, President Joe Biden called on Congress to invest in services that allow people with disabilities to get the care they need in their own homes and “make room for the millions of family caregivers caring for their loved ones.”
Biden proposed allocating $400 billion in 2021 for Medicaid home- and community-based services, aimed at expanding access for people on waiting lists and bolstering the workforce of specialists providing direct support.
The U.S. House of Representatives approved a scaled-down version of the plan, dedicating $150 billion to the program, but it never made it to a vote in the Senate. A permanent 10 percent increase in federal Medicaid matching funds for home- and community-based services was proposed as part of the Better Care, Better Jobs Act.