For Patients With Intellectual And Developmental Disabilities, Access To HCBS Remains Grim

Providers and stakeholders dedicated to improving access to home- and community-based services (HCBS) are at a crossroads, particularly when it comes to caring for intellectual and developmental disability (IDD) patients.

“The direct support workforce crisis continues to be the single greatest barrier to access to community-based services for people with intellectual and developmental disabilities,” Lydia Dawson, VP of government relations at ANCOR, told Home Health Care News. “We’re still seeing 95% of community providers experiencing moderate or severe staffing shortages — just in the past year alone — and those shortages have reached the point that they’ve caused providers to shutter programs and close services.”

Dawson and her team at ANCOR – an advocacy organization for over 2,000 community-based providers – recently published a report with United Cerebral Palsy that paints a sobering picture of the challenges facing individuals with intellectual and developmental disabilities (IDD) who rely on HCBS across the U.S.


The report — “The Case for Inclusion 2024: Transforming Temporary Progress into Long-Term Sustainability” — found that the number of people with IDD on waiting lists for HCBS grew to about 497,000, or by 3.3%, in 2023 compared to the year before.

The report also found that over 80% of people on HCBS waiting lists lived in one of five states: Texas, South Carolina, Florida, Illinois, and North Carolina. Nearly two-thirds of the people were in Texas alone.

But the waiting lists alone are not the only factor that determines whether or not someone can access HCBS, Dawson explained.


“As soon as someone is able to get off of a waiting list, they still face a number of barriers to access community inclusion,” Dawson said. “On top of finding a provider — which we saw 75% of providers who offered case management reporting difficulties connecting people with available providers — we are also seeing people struggle to have health related social needs met that contribute to their ability to access home- and community-based services.”

Adequate staffing is the No. 1 reason why HCBS access is an issue, Dawson said.

There are several reasons why the direct care workforce shortage has persisted, but none bigger than the inadequate Medicaid reimbursement rates for providers. This disconnect, Dawson said, has severely hindered the ability of community-based providers to offer competitive wages and meet the growing demand for HCBS.

According to the report, 95% of providers experienced moderate to severe staffing shortfalls in 2023. As a result, 44% of those surveyed said they had to discontinue programs or services in 2023, 77% turned away new referrals and 72% struggled to meet quality standards.

However, there are some positive outcomes from ANCOR’s report. Hourly wages for direct support professionals increased from $13.61 in 2020 to $14.41 in 2021, the most recent years where data was available.

This marks the second consecutive year of wage increases made possible, at least in part, to temporary emergency funding authorized in response to the COVID-19 pandemic.

However, those small incremental increases in wages aren’t pushing the envelope in ways that are aiding access.

“It’s very encouraging to see the wages for direct support professionals increase, but given how competitive it is to keep DSPs in their positions, even these increases alone have not lowered the rates of vacancy,” Dawson said. “We still see 16.5% vacancy rates in full-time positions, which has almost doubled since pre-pandemic, and part-time vacancy rates increasing to 20.3%.”

For instance, 17 states and the District of Columbia have closed all of their state-run institutions, up from 16 a year ago.

HCBS for individuals with IDD are mostly funded by Medicaid, with states setting reimbursement rates and the federal government contributing matching funds through the Federal Medical Assistance Percentage (FMAP).

In 2021, temporary funding boosts from the American Rescue Plan Act (ARPA) and the Families First Coronavirus Response Act (FFCRA) increased wages for DSPs. However, with FFCRA funds ending in 2023 and ARPA funds expiring in 2025, there are serious concerns about maintaining wage improvements — especially since many DSPs still earn below $15 per hour.

ANCOR has laid out a list of recommendations for states and federal regulators to consider if access to HCBS is ever going to turn around.

“Principally, our recommendations include requiring states to establish systems of access monitoring that compel regular reviews of Medicaid reimbursement rates,” Dawson said. “It is the insufficiency of our reimbursement that makes it very difficult to meet all the costs of service delivery, including providing for an adequate workforce that’s driving the access problems connecting people with services.”

Dawson and her colleagues also recommended the extension of FMAP funding for states, establishing a standard occupational classification for DSPs and enacting legislation that would fund federal grant programs to support training, recruitment and retention of these workers.

Companies featured in this article: