There is a workforce crisis drowning community-based providers and, in turn, the families that rely on their services. The Better Care Better Jobs Act offers a lifeboat and promises a path to shore. We have an opportunity to save services for individuals with intellectual and developmental disabilities but only if there is political will to throw us the line. 

Community-based services make it possible for people with intellectual and developmental disabilities to live a life of their choosing, in the community and as independently as possible. As the chief executive of ANCOR, the nations leading voice for community-based providers, my staff field frantic phone calls on a daily basis from providers having run out of options for ensuring support to the people that rely on them for care. Our members provide crucial, often life-saving services, such as supporting people with activities of daily living, finding and maintaining employment, taking medications and following prescribed regimens to stay healthy, and much more. Without access to these critical services, individuals with disabilities are at increased risk for institutionalization and hospitalization at a time of extremely limited capacity. 

The vast majority of community-based providers are funded by Medicaid, which means they have little wiggle room to raise wages and can only pay what reimbursement rates allow. Because of this, vacancy and turnover rates far outpace even the industries hardest-hit by COVID-19. While this workforce crisis existed long before the pandemic, the impact of COVID-19 on the private market has subsequently decimated the remaining workforce and forced unprecedented closures nationally. 

According to a survey of nearly 500 providers from this past August, right now, around 77 percent of providers are turning away new referrals, a 16.7 percent increase since the beginning of the pandemic. Meanwhile, 58 percent of providers are discontinuing programs and services, and more than half due to insufficient staffing. In large part, these conditions are a direct result of DSPs unlivable wages, with 86.2 percent of providers surveyed indicating that DSP wages are lower than income provided by unemployment or other state or federal safety net benefits.

One of our members in Kentucky, for instance, reported they permanently discontinued day services because they were perpetually unable to retain staff following the onset of the pandemic. Another member in Minnesota was forced to close a group home, thereby displacing a half-dozen people who had been supported there for years. The list goes on and on, and thats to say nothing of the services that have yet to be discontinued but are on the brink if things dont change soon. 

Community-based providers are simply unable to compete with higher pay and better benefits offered by what were once minimum-wage industries, such as retail, convenience stores and fast food. The funding we receive is determined by Medicaid rates; we dont have the luxury of raising prices to offset the cost of increased wages to attract more workers. Moreover, we support people with essential care services, often in their homes and around the clock. We cant simply close early or cut back hours to ensure all shifts are covered.

The good news is that relief is on the horizonif our federal lawmakers act to invest in people with disabilities and the services on which they rely. The budget resolution currently being debated in Congress includes a proposal known as the Better Care Better Jobs Act (Better Care). Better Care would make the single-largest investment in Medicaid in the programs history by allocating $400 billion over the next 10 years. It would compel states to pay reimbursement rates that enable providers to pay a competitive wage and establish a timeline for developing national quality standards to ensure the highest-quality supports possible.

Better Cares financial investment, coupled with the accountability it would establish by spurring innovations in the Medicaid program, are sorely needed. And, frankly speaking, the funding alone wont be enough to fully stem the tide of the direct support workforce crisis. Thats why Congress must do the right thing by investing the full $400 billion in its budget resolution, especially in light of more recent efforts by members of the House to cut that amount by more than half. Decades of underinvestment in Medicaid has eroded the foundation of care and requires immediate support with Better Cares path forward that emphasizes accountability, stability and sustainability.

Community-based providers and direct support professionals have been treading water for decades, desperately trying to stay afloat for thousands of people relying on their care. Many have already gone under and those that remain need help before its too late. Better Care is the lifeline that offers hope and safety in these turbulent waters.

Barbara Merrill is chief executive officer for ANCOR, the American Network of Community Options and Resources.