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Congress has again failed people with disabilities — we need bipartisan legislation now

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When the Senate unveiled its reconciliation package in August, service providers for people with intellectual and developmental disabilities (I/DD) were stunned to see additional funding for the Medicaid Home and Community Based Services (HCBS) program was excluded — even despite the fact that HCBS funding was proposed by the White House and faced no opposition from Senate Democrats.

A pattern is starting to emerge: Congress repeatedly suggests that it is committed to strengthening services for people with disabilities, only for disability services to quickly fall by the wayside before any funding proposal can get across the finish line. As a result, service providers are unable to pay a living wage to their essential workers and our most vulnerable populations lack access to these critical services. This continues to be an ongoing cycle that’s only getting worse. 

Today, chronic workforce shortages, exacerbated by the pandemic, are threatening access to services for millions of people with disabilities and their families. Thousands are left languishing on waiting lists, while providers have been forced to close countless programs. As brand-new data from a survey of nearly 800 providers reveals, 62 percent of community providers have discontinued programs and services, representing a staggering 82 percent increase since just before the pandemic. 

Lack of access to services has devastating impacts for people with disabilities, their family members and our society. As the chief executive of the nation’s leading association for community disability providers, I hear heart-wrenching stories every week about how a lack of staff means, for example, that people have to sleep in their wheelchairs because there is no one there to help them maneuver out of bed when they wake up the next morning.  

We have long said that we need bold, decisive, bipartisan action from lawmakers to address the growing workforce crisis. But Congress squandered an opportunity for transformational change by excluding an investment in HCBS from its reconciliation package. As such, the onus is now on lawmakers on both sides of the aisle to find some other mechanism to deliver this legislation before the entire service delivery system collapses.

The urgency of this moment cannot be overstated. Our system to support people with I/DD was falling apart long before the COVID-19 pandemic. A separate report from my organization and United Cerebral Palsy found that between 2019 and 2020, vacancy rates for full-time direct support roles increased from 8.5 percent to 12.3 percent—roughly a 45 percent increase in a single year. Meanwhile, whereas starting wages in some hourly-wage industries nearly doubled in response to the pandemic, average hourly wages for direct support professionals — which are dictated primarily by states’ Medicaid rates — increased by just $1 between 2019 and 2022.

Even if providers can find qualified workers, the quality of services decreases when wages are suppressed. Our newest survey reveals that 92 percent of disability service providers are struggling to adhere to quality standards due to ongoing recruitment and retention challenges. As a result, more than 8 in 10 providers are turning away new referrals, an increase of more than 25 percent compared to pre-pandemic levels.

If Congress is ready to take decisive action, there is no shortage of bold steps to be taken. First, an investment in the Medicaid HCBS program of the scope initially proposed by the Better Care Better Jobs Act would make significant strides toward strengthening the workforce and should be included in any year-end legislation Congress takes up after the midterms. Second, Congress can compel the Bureau of Labor Statistics to establish a standard occupational classification for DSPs, which would help improve data collection and shed light on the scope of the problems we face. 

Congress should also create legislation that mandates that the Centers for Medicare & Medicaid Services require states to adjust their Medicaid reimbursement rates to combat ongoing wage suppression, and then require comprehensive rate reviews at regular intervals every two to three years.

Bipartisan legislation to stabilize the direct support workforce is long overdue, and every day we wait is another day that people with intellectual and developmental disabilities risk unnecessary hospitalization or long-term institutionalization. 

Barbara Merrill is CEO of the American Network of Community Options and Resources.

Tags disabled care Medicaid Home and Community Based Services program

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