Report: State of Disability Services In U.S. Unsustainable, In Need of Transformation

A new report lays out just how much the COVID-19 pandemic has devastated the country’s ability to support and provide for people with intellectual and developmental disabilities (IDD).

Revenue shortfalls and higher expenses brought on by lockdowns, social distancing orders, and necessary safety protocols have strained provider programs, which, even before the pandemic, were plagued by understaffing, poor funding, and inadequate resources.

The Case for Inclusion 2021 report, published by the ANCOR Foundation and United Cerebral Palsy (UCP), details how the pandemic has amplified existing problems, but it also offers a way out.

‘The Bare Minimum’

Whether you zoom in or zoom out, you can see how much the pandemic has taxed the ability of service providers to deliver care for those most in need.

Since the beginning of the pandemic, community-based providers have had to adopt rigid health and safety protocols that, while necessary for limiting the spread of COVID-19, are expensive, labor-intensive, and time-consuming to uphold — not to mention beyond the professional scope of many providers.

These new challenges have hit providers and caregivers on both the revenue and expense side. Many providers have been forced to close day programs, which have not only deprived these programs of income sources but also blocked people with IDD from receiving much needed care.

Surveys conducted as part of the report reveal just how dire the situation is:

  • In April of 2020, as many as 68% of providers had been forced to discontinue at least one service, resulting in an average revenue loss of 32%.
  • By July, the number of providers reporting at least one discontinued program was as high as 77%, and 16% expected those closures to be permanent.

Meanwhile, expenses have skyrocketed. Many direct support professionals (DSPs) have had no choice but to leave the profession in order to care for children whose schools were closed, for families members who had fallen ill, or because of general anxiety about contracting the virus.

This, coupled with the need for some DSPs to limit patient exposure, has resulted in severe staffing problems and expenses:

  • In a survey of roughly 700 providers, staffing problems was cited as the No. 1 concern, followed by the supply of adequate personal protective equipment (PPE).
  • On average, providers have been forced to spend an additional $77,514 per month since March 2020.

It’s clear that all of the problems from the COVID-19 pandemic have compounded to create a major shortage of resources for the millions of people who need it most.

The Problem Isn’t New

Unfortunately, COVID-19 is not the sole culprit here. Provider programs and services have been suffering from inadequate funding for years, if not decades. The pandemic has only worsened the problems that already existed.

Consider the Medicaid disability service system. Turnover rates in that program have averaged 43% nationally and reached north of 50% in some states, thanks in large part to low wages. Insufficient reimbursement from states further forces providers to operate on the thinnest of margins.

Programs like the disability service system are critical for people with IDD, particularly students and young people who rely on them for skill development, vocational training, and social interaction.

Between high turnover rates, poor funding, and insufficient reimbursement, provider programs were made utterly unprepared for when the pandemic hit. One estimate found most programs had only enough cash on hand to operate a single month in the event of even a modest revenue disruption.

One Indiana-based IDD service provider put it bluntly:

“Our organization can’t move forward with new or innovative programs. Quality supports are sacrificed. We often provide the bare minimum because we don’t have the resources to do any more. We have to say no to people who want our services because we don’t have staff to provide the service.”

Children with disabilities, such as those living with cerebral palsy — a kind of birth injury — will find it more difficult to get the physical therapies and treatment that they need.

The Way Out

Despite its grim diagnosis, the Case for Inclusion 2021 report offers a way out. For ANCOR, UCP, and millions of IDD service providers, what’s needed is a fundamental transformation.

To that end, the report highlights 3 core needs to be addressed by states, Congress, and the Biden Administration:

  1. Resources for addressing providers’ needs triggered by the pandemic.
  2. Resources and innovations for supercharging the direct support workforce.
  3. Innovations for empowering providers to improve quality outcomes.

The report also details important steps that the government can take to ensure the long-term viability of community IDD programs.

One is for Congress to increase funding to the CARES Act Provider Relief Fund, as well as staffing and PPE. Another is for the Biden administration to encourage state implementations, and a third is for states to expand DSP eligibility criteria and test new value-based payment models.

Whether or not elected officials rise to the challenge remains to be seen. What is clear, however, is that the current course is unsustainable, and that Americans with IDD deserve better than what their government is currently providing them.

Armando Contreras, president and chief executive officer for UCP, summarized the problems in a statement:

“While service providers and caregivers over the past year have met these challenges head on,” he said, “we cannot simply return to a system that undervalues the critical role these professionals play every day and in every corner of our country. As the nation recovers from the wave of death and trauma inflicted by the pandemic, people with disabilities must not be left behind.”

Sokolove Law Team

Contributing Authors

The Sokolove Law Content Team is made up of writers, editors, and journalists. We work with case managers and attorneys to keep site information up to date and accurate. Our site has a wealth of resources available for victims of wrongdoing and their families.

Last modified: April 22, 2021

  1. Ancor Foundation, “Case for Inclusion 2021: Making the Case, Meeting the Moment.” Retrieved from Accessed on April 15th, 2021.
  2. ANCOR Foundation and UCP, “New Report: Pandemic is Exacerbating Crises in System of Community-Based Supports for People with Intellectual, Developmental Disabilities.” Retrieved from Accessed on April 15th, 2021.
  3. Open Minds, “The Case For Inclusion 2021: A Special Report On The Sustainability Of Community Disability Services In America – Executive Summary.” Retrieved from Accessed on April 15th, 2021.
  4. The Case for Inclusion, “Data: Reaching Those In Need.” Retrieved from Accessed on April 15th, 2021.
  5. The Case for Inclusion, “The Case for Inclusion 2021.” Retrieved from Accessed on April 15th, 2021