Over 500K Individuals Are on I/DD Waitlists, Calls for Better Worker Compensation to Close Services Gap

Reimbursement and support for intellectual and developmental disabilities (I/DD) services had long been problematic, and a new report asserts that the pandemic has only made things worse, as more people than ever are on waiting lists for I/DD services.

The ANCOR Foundation – which represents over 1,800 I/DD provider members – and United Cerebral Palsy (UCP) collaborated on the two-part report that addressed problems and offered solutions.

ANCOR and UCP assessed data points across 80 measures to demonstrate what they believe is the lack of adequate state and federal support for I/DD resources and services.

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The problems, according to the report, have consequently resulted in a number of direct support professionals (DSPs) leaving the I/DD workforce, which has in turn affected the speed of time I/DD individuals are able to receive assistance. A significant portion of I/DD support services is reimbursed through the Home and Community Based Services (HCBS) program administered by Medicaid.

“The effects of these [workforce] challenges aren’t hard to imagine,” the authors of the report stated. “More families than ever are languishing on states’ waiting lists for HCBS services.”

All 50 states and the District of Columbia were assessed for the I/DD services. According to ANCOR and UCP, 589,940 individuals were on waiting lists at HCBSs nationwide. Of those waiting, 78% were concentrated in five states alone.

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“People on states’ waiting lists can find themselves there for months and, more commonly, years, waiting for authorization to seek services,” the report claims. “Families are rarely, if ever, provided a timeframe for when they can expect support to become available.”

ANCOR and UCP believe that I/DD wait lists are as high as they are due to high turnover rates among I/DD workers, which leaves gaps in services to be performed.

Nationally, the rate of turnover among DSPs increased by about one percentage point to 43.6% in 2020. Additionally, vacancy rates for full-time direct support positions increased by roughly 45% from 2019 to 2020.

Various reasons for the turnover include inadequate pay for workers, 63% of whom are estimated to be individuals identifying black, indeginous and people of color.

The authors noted that workers’ wages – which is driven by the Medicaid revenues of providers earn – also fail to adequately account for hazard pay during the pandemic compared to payment from other industries.

“With the pandemic having wreaked havoc on the broader labor market, private industries … were able to pivot by offering increased wages and hazard pay,” the authors stated. “In turn, community disability service providers – which rely almost exclusively on Medicaid funding – were left struggling to sustain operations and without solutions for retaining their workforce.”

The authors believe that more I/DD individuals can start receiving services if various steps were taken to tackle the workforce shortage issues.

At the federal level, ANCOR and UCP have called on the Biden administration to incentivize states to use federal funding to address components of the workforce crisis. The report also supports states compelling – and President Biden requiring – the U.S. Bureau of Labor Statistics to establish a Standard Occupational Classification (SOC) for DSPs that will raise worker wages.

“The absence of a SOC situating DSPs in a distinct profession also enables states to keep DSP wages low by using extant data about these other professions to justify depressed reimbursement rates,” the authors said.

ANCOR and UCP further called on states to apply for each federal funding opportunity that targets support and services for individuals with I/DD. Additionally, the organizations called on states to focus spending plans on stabilizing the direct support workforce crisis.

“Rather than being reasons why providers and advocates are left feeling jaded, these harsh realities are the very reasons we continue to fight,” the authors stated.

To view the report in its entirety, click here.