The Home and Community-Based Service (HCBS) Waiver Program is a joint state-federal program under Medicaid that allows certain individuals with severe intellectual disabilities, spinal cord injuries, or other debilitating conditions to receive specialized long-term care at home, rather than in an institutional setting. According to the Congressional Research Service, this specialized care may include personal home care to assist with daily tasks (bathing, eating, etc.), habilitation services, and respite care.

As of 2017, 4.6 million Medicaid recipients received care through a HCBS waiver. However, since the HCBS program is not an entitlement program, funding is limited and is based on available state and federal funds. As a result, many individuals may sit years on a state waiting list to receive care at home.

There are more than 707,000 people waiting to receive care through a HCBS waiver in the United States. Oklahoma has 5,672 individuals with developmental disabilities on its state waiting list as of March 31, 2019, according to the Oklahoma Department of Human Services (ODHS).

Last year, the Oklahoma legislature earmarked $2 million to help serve individuals on the waiting list. ODHS estimated the funding would help 200 Oklahomans on the waiting list. But there are still thousands of Oklahomans waiting years, sometimes more than a decade, before they receive care through a HCBS waiver.  

Sadly, some on the list that wait for years never receive the specialized care they are eligible for. A 2018 study by the Foundation for Government Accountability (FGA) found that 21,904 individuals with severe debilitating conditions on state waiting lists had died in 13 states that had expanded Medicaid under Obamacare to able-bodied adults. Their figure did not include others who have died in non-expansion states during that time period.

Instead of state lawmakers extending entitlement benefits to hundreds of thousands of able-bodied, working age adults, perhaps they should focus on prioritizing resources for the most vulnerable Oklahomans.