A new report is painting a grim picture of intellectual and developmental disability services nationally as labor shortages and other factors mean individuals in this population are struggling to access supports in the community.

The number of people with developmental disabilities who are on waiting lists for home and community-based services grew by nearly 117,000 since data was last reported in 2020. And, with pressures from COVID-19 leading many service providers to shut down offerings or turn people away, the level of unmet need is likely much greater, according to an analysis released this month by United Cerebral Palsy and the American Network of Community Options and Resources, or ANCOR.

The annual report known as the “Case for Inclusion” assesses 80 different metrics to evaluate how well states are assisting people with intellectual and developmental disabilities in the community.

Increasingly, large, state-run institutions are shuttering, the report found. By 2018, 16 states and Washington, D.C. had closed all such facilities, most recently Montana and Tennessee.

Meanwhile, however, data shows that nearly 590,000 people remain on waiting lists for home and community-based services nationally, more than 78% of whom reside in just five states — Texas, Ohio, Louisiana, Florida and Illinois.

Among people with intellectual and developmental disabilities who are receiving employment or day supports, the report indicates that just 1 in 5 are participating in integrated employment, a circumstance that appears heavily dependent on where they live. While more than half of adults in this population were receiving help to find a community-based job in Washington, Oklahoma, Oregon and Rhode Island, 10% or fewer were receiving similar support in Hawaii, Texas, Illinois, Florida and New Jersey.

Underlying many of these issues are persistent staffing challenges, which have been exacerbated by the COVID-19 pandemic, advocates say. Findings from the report show that at the close of 2020, one out of every eight full-time direct support professional positions across the country was unfilled, a 45% increase over the previous year.

ANCOR and UCP are calling on federal lawmakers to make significant investments in the nation’s home and community-based services system and to push states to raise and regularly review the reimbursement rates paid to disability service providers by Medicaid.

“If there has been any silver lining at all from the COVID-19 pandemic, it has been that policymakers now understand the wide-reaching repercussions of failing to invest in the services on which people with IDD rely and the vast network of providers who deliver those services,” said Barbara Merrill, chief executive officer at ANCOR. “That means the onus is now on us to capitalize on that understanding to advocate for more equitable policies that reverse the damage done over the past two decades and especially the past two years.”

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.