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More than half a million Americans with intellectual and developmental disabilities are currently waiting for government funding for long-term care in their homes.
That list of individuals, who need lifelong or extended support to live independently within their communities, is lengthy in dozens of states, forcing them to wait, often for years, to acquire assistance with daily tasks such as cooking and transportation.
Oklahoma’s backlog had grown to more than 5,000 people before state lawmakers approved funding last year to eliminate a waitlist for disability services that had a wait time of up to 13 years. The $32.5 million package was the largest-ever funding increase in the history of Oklahoma’s Department of Human Services.
Beth Scrutchins, director of the state’s Developmental Disabilities Services, which manages the waitlist and is a division under the state’s DHS, said it was a “perfect storm of awareness” that led to the funding package. The agency is hoping to have the entire waitlist cleared within 18 to 24 months.
“Everybody had ownership in the problem and wanted to solve the problem and really support individuals and families,” Scrutchins said. “We feel like we’ll be leading the nation in terms of working with individuals and families with this historic appropriation and this investment in Oklahoma families.”
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Intellectual and developmental disability services are a lifeline for individuals and their families. These services include early intervention programs, behavioral therapy, speech and language therapy, occupational therapy, and other services that help people with disabilities.
There are currently 37 states, including Oklahoma, that maintain waitlists for waivers that grant funding for Medicaid home and community-based services as an alternative to institutional residential facilities. These benefits are designed to assist individuals with disabilities in living and working in their communities. In some states, like Oklahoma, community care is the only option; the state closed their state-run facilities more than a decade ago.
In Oklahoma, DDS serves anyone age 3 and older who has a primary diagnosis of intellectual or developmental disabilities (IDD), including autism, cerebral palsy and Down syndrome.
Waivers include funding for a number of different services including residential, employment and habilitation services and supports and is tailored to provide services appropriate to the individual’s needs.
The In-Home Supports Waiver, allows children to receive up to $19,283 of services per year. Eligible adults can receive up to $28,914 of services per year. These waivers are not cash payment programs, but provide funding through agencies contracted with the Oklahoma Health Care Authority.
Experts who spoke to the PBS NewsHour suggest this issue highlights the urgent need for more government funding toward accessible, community-based care services that improve quality of life for individuals with IDD. Without such measures, thousands will continue to remain on waitlists.
Waitlists are a result of a state’s decisions on which populations to serve, the services it decides to provide, and the resources it commits to fulfilling those requests, said David Goldfarb, director of the Arc of the United States, a nonprofit serving people with intellectual and developmental disabilities.
“These services are provided through Medicaid and as a whole has often been underfunded,” Goldfarb said. “I wish I could say that we were in a good place. The reality is we’re not. We’re facing a shortage of workers. We’re facing potential funding cuts and people are not getting the services that they need.”
Goldfarb said states also have varying approaches to managing waitlists, including prioritization and eligibility screening, making it difficult to compare wait times across states.
Medicaid is typically the primary financial resource available to many people with IDD to reside and work in the community alongside loved ones. Collectively, state and federal Medicaid provide over 75 percent of the funding for services for people with IDD throughout the country, leaving families to make up the rest.
Oklahoma State Rep. Ellyn Hefner understands well the pressure Oklahoma parents face when they can’t access services.
Her 18-year old son, William, has a developmental disability. Hefner said she’s heard from other parents who had to quit their jobs to take care of their children with disabilities full time. As a single mother, Hefner could not quit her job. Part of her campaign for the Oklahoma state House in 2022 was to be a voice for families on the IDD waitlist in the legislature.
Hefner spent more than a decade waiting for services before getting off the waitlist in January, when they became eligible for funding for a caregiver to look after Hefner’s son when she cannot.
Recently, William and his caregiver were working out together at a local gym when William experienced a seizure and fell and hit his head. The caregiver, whom both Hefner and her son credit for saving William’s life, was able to help him get immediate medical care.
“There’s such a great feeling when you know that you can trust someone else to take care of your son,” Hefner said.
Many states are working to clear their waitlists for IDD services by investing in more funding for these programs, while others are streamlining the application process or working to recruit more professionals to work in these fields.
In Virginia, more than 14,400 people are waiting for a Medicaid waiver. Of those, 3,199 fall under the category of “priority one,” meaning they will require services within a year or less, WRIC reported.
In 2018, Louisiana’s waitlist for IDD services had nearly 30,000 people. To emphasize community-based care, the state introduced a new system called Screening for Urgency of Need (SUN), which identified individuals in urgent or emergent need of services and provided them with the necessary assistance. Those who didn’t meet the criteria were placed on a registry and were screened regularly or upon request. By 2020, the waitlist had been completely eradicated.
Ohio’s waitlist for IDD services was nearly 69,000 people in 2018. However, the following year, the state introduced a new assessment to reevaluate the waitlist. It helped identify individuals who did not meet the waiver criteria and instead offer them other Medicaid or state resources. With those efforts, Ohio reduced its waitlist down to around 2,000 people in 2021.
Texas created a new program to help reduce the wait times and provide more options for families. Called the Texas Home Living Program, the program provides funding for individuals with IDD to live in their own homes with support from trained professionals.
While Oklahoma is allocating money to services in order to clear the waitlist, neighboring Texas continues to see its wait time grow. As of January 2022, the Texas Health and Human Services Commission has a waitlist of roughly 170,000 people.
Insufficient funding is a core factor in the Texas system. Despite the number of people eligible for Medicaid waivers in Texas doubling since 2010, the state legislature, under Republican leadership, has only increased funds by a mere 17 percent, according to a report by the Houston Chronicle.
The repercussions of this funding shortfall are also felt by caregivers. According to the Chronicle’s reporting, attendants responsible for caring for disabled individuals in the state receive a wage of $8.10 per hour, one of the lowest rates in the nation.
Other states are working to streamline the application process for IDD services. In California, families can now apply for services through an online portal, aimed at making the process simpler and more accessible.
During his State of the Union address in February, President Joe Biden urged Congress to invest in services that allow people with disabilities to receive the care they need in their homes, and “give more breathing room to millions of family caregivers looking after their loved ones.”
In 2021, Biden proposed allocating $400 billion to Medicaid home and community-based services, which aimed to expand access to those on waitlists and strengthen the workforce of professionals who provide direct support.
The U.S. House of Representatives approved a reduced version of the plan, with $150 billion for the program, but the funding did not make it to a vote in the Senate. As part of the “Better Care Better Jobs Act,” a permanent 10 percent increase was proposed in federal Medicaid matching funds for home and community-based services.
Adam Kemp is a Communities Reporter for the PBS NewsHour based in Oklahoma.
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