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New Report: Access to Disability Care Has Dropped to Dangerous Levels Nationwide as Workforce Shortage Grows More Severe

This photograph is a portrait shot of Armando Contreras in a suit. He is the president and chief executive officer of United Cerebral Palsy.

Armando Contreras is the president and CEO of United Cerebral Palsy

This photograph is a portrait shot of  Barbara Merill

ANCOR President & CEO Barbara Merrill

ANCOR and UCP’s Case for Inclusion 2023 reveals over 60% of disability service providers discontinued programs or services in the past year.

“Threats to community-based services due to workforce and funding shortages have existed for decades, but the threat has escalated to dangerous levels,” said UCP President and CEO Armando Contreras.”
— UCP President/CEO Armando Contreras
VIENNA, VIRGINIA, UNITED STATES, March 20, 2023 / -- A new report issued today by the American Network of Community Options and Resources (ANCOR) Foundation and United Cerebral Palsy (UCP) finds that as the need for home- and community-based services (HCBS) funding grows more dire, provider organizations are struggling to maintain programs and services for people with intellectual and developmental disabilities (IDD) due to significant shortages of caregivers.

The Case for Inclusion 2023, the most comprehensive annual look at the nation’s state of services for people with IDD and the workers who care for them, reports that in the past year alone, 63% of community service providers have discontinued programs or services due to lack of available staff. This represents a staggering 85% jump since the early days of the COVID-19 pandemic.

In addition, more than half of providers surveyed say they are considering cutting more programs or reducing existing services, while 83% are turning away or not accepting new referrals of people with disabilities who need care.

“Coming out of the peak pandemic, there was a glimmer of hope that things would get better and that we’d be able to move from our isolation model back to offering community events. But things have only gotten worse. Instead of returning to some sort of ‘normal,’ we’re shutting down additional services and turning away more new referrals because we don’t have enough Medicaid funding to pay and retain DSPs,” said Linda Timmons, President and CEO at Mosaic, a community service provider. “Before the pandemic, our DSP turnover rate was 45%. Now it’s closer to 70%, with 20% of our positions vacant at any one time, and that’s across all 13 states where we operate. We are at the breaking point we’ve been warning about for years.”

The crisis-level workforce shortage of direct support professionals (DSPs) is directly tied to stagnant Medicaid reimbursement rates, which prevent disability service providers from raising wages in order to attract and retain workers, and compete with increased salaries in other hourly-wage, private sector jobs. DSPs earn just $13.36 per hour on average, although median hourly wages for these workers in some states fall below $9 and starting hourly wages elsewhere hover around $8.

Meanwhile, by 2030, the demand for workers to deliver home- and community-based services is projected to increase by 37% over 2020 levels, with an estimated 7.9 million new job openings.

“Unlivable wages are forcing workers out of the field, accelerating program closures and service reductions for people with disabilities, and leaving them at greater risk of institutionalization. Even so, HCBS funding is often excluded from legislative agendas altogether or voted down when on the agenda,” said Barbara Merrill, Chief Executive Officer for ANCOR. “Without intentional and urgent investment, the community integration promised to people with disabilities through Olmstead [Supreme Court decision] and the Americans with Disabilities Act will never be realized, putting our system of support at risk of collapse. Lawmakers need to recommit to this promise and guarantee that the 2.5 million people nationwide with IDD and their families have access to essential services and that the workforce that supports them are paid living wages.”

“Threats to community-based services due to workforce and funding shortages have existed for decades, but the threat has escalated to dangerous levels, forcing providers to deny access to crucial care and other support services for people with IDD,” said UCP President and CEO Armando Contreras. “The Case for Inclusion 2023 highlights how these threats are growing, as nearly a half-million people languish on states’ waiting lists for services, essential programs are being cut or discontinued at alarming rates, and service providers’ ability to grow their workforce and cope with shocking turnover rates is shrinking. The time for bold, decisive action to stabilize the DSP workforce and rebuild community-based services is now.”

Contreras also points to data included in the Case for Inclusion 2023 this year on workforce demographics, revealing that the current DSP workforce is predominantly women (86%) and people of color (61%), and includes a fast-growing segment of immigrants. In fact, while immigrants make up 16% of the total U.S. labor force, they make up 31% of home care workers.

“Medicaid reimbursement rates are primarily to blame for today’s DSP workforce crisis,” Contreras said. “It’s said that if you want to know why the caregiving workforce is so poorly paid and unappreciated, we only need remember that we’ve always underpaid women and people of color.”

Given the composition of the direct care workforce, continued underinvestment in HCBS is perpetuating racial and economic inequities. But the lack of sufficient data on social determinants among DSPs presents added challenges. Yet we know that among home care workers, which encompasses many types of jobs including DSPs, more than half receive some form of public assistance, with a median annual income of $19,100, and 43% live in a low-income household.

Making matters worse, a “Direct Support Professional” who serves people with IDD is not formally recognized as an occupation by the federal government and there is no federal requirement for states to collect or report regional workforce data, giving the federal Centers for Medicare and Medicaid Services (CMS) little information to assess the adequacy and equity of state wage rates.

Additional Key Findings of the Case for Inclusion 2023 and proposed solutions included in full press release in link below.

Read the full press release @

Armando Contreras
United Cerebral Palsy
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