In protecting Americans with disabilities, Congress has fallen short. We need a permanent solution

The Americans With Disabilities Act of 1990 was a huge step, but Congress must do more to protect the vulnerable, writes Angela F. Williams.
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Right now, 61 million Americans—roughly one in four adults—live with some form of disability. That number will only rise as the senior population grows from 54 million today to 88 million in 2050. 

Providing these vulnerable Americans with quality support—either at home or in a long-term-care facility—requires immense time, effort, and resources. Most families can’t handle that burden on their own. They need professional help. 

And that help is on the way, thanks to President Biden and Congress. The recently passed COVID relief bill included a 10% funding increase for Medicaid’s Home and Community-Based Services (HCBS) program, so that people with intellectual, physical, or developmental disabilities can receive expert care in their homes. 

For now, the increase is only temporary. But Biden and Congress could improve millions of Americans’ lives by permanently allocating more funding for this vital program in the upcoming infrastructure bill. 

HCBS provides life-changing care but is chronically underfunded. Direct support professionals (DSPs) and direct care workers are the backbone of the program. They’re the ones who help people with disabilities live full, rich lives so they can participate in their communities. 

To patients, these home and community-based service workers are not just caregivers, they are guardian angels.

Yet caregivers’ income—which is effectively capped by Medicaid reimbursement rates—is barely above the federal minimum wage. Pay is so low that 79% of DSPs leave their posts before the six- to 12-month mark. Despite rising demand from patients, many home health providers across the country are turning away new referrals or closing altogether “because they can’t find the workforce,” according to the American Network of Community Options and Resources. 

This constant turnover can create exactly the kind of instability and isolation that home-based care is supposed to prevent. Driving caregivers from their profession and depriving Americans with disabilities of their care helps no one.

We have to start giving Americans with disabilities the attention and commitment they deserve. To make up for past shortfalls and to meet future demand, Congress should increase funding for the HCBS program by $450 billion. This new investment should include automatic, periodic raises for DSPs, the majority of whom are women of color

Thirty-one years ago, President George H.W. Bush signed the Americans With Disabilities Act to help people with disabilities live active, productive, dignified lives in their homes, with their families, and in their communities. While significant progress has been made since then, more must be done to fulfill our nation’s commitment to some of our most vulnerable members of society. 

The past year has underscored how much more prudent and economical it is to prevent crises—rather than attempt to manage them after they strike. The crisis in the lack of home and community-based care for Americans with disabilities is right around the corner. For many, it’s already here. 

The recent funding boost in the COVID bill is an important step in the right direction. And the President’s proposed infrastructure bill would allocate $400 billion for the HCBS program, providing much-needed support for caregivers. But this funding will only begin to address decades of inadequate Medicaid reimbursement rates. This administration needs to carefully track rates and DSP wages, making sure they appropriately reflect the value of the DSP profession. 

It would represent the biggest investment in Medicaid’s HCBS program in history. And it can’t come a moment too soon. After years of underfunding, it’s time for Congress to defend this program, the vulnerable Americans it serves, and the professional and family caregivers who make it work.

Angela F. Williams is the president and CEO of Easterseals.

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