North Carolina is deep into the worst public health crisis in modern history. Our state, along with the rest of the country, is struggling to recover. People with intellectual/developmental disabilities (I/DD) and the essential workers who support them are left out of recovery plans.
People with I/DD often need extra support to be a part of their community. Direct support professionals (DSPs) help with everyday tasks like getting up in the morning, bathing, dressing, household tasks like meal preparation, and grocery shopping. Navigating the world around them can involve help with communicating with others, building relationships, and accessing places like the pharmacy and medical appointments. The work that DSPs do is invaluable, helping people with disabilities live and work in their communities. Without them, people with disabilities are at risk of ending up in an institution and we’ve seen during the pandemic that institutionalization carries with it more than just the risk of isolation. As the virus has spread across the US, people with disabilities in institutional settings like nursing homes have faced substantially higher rates of infection and death.
The work that DSPs do is personal and necessary and yet during the pandemic, many DSPs have faced greater challenges accessing personal protective equipment than many other health care providers. Even without adequate supplies, many DSPs are making heroic decisions daily to keep the individuals they support safe, sometimes even living with them instead of their own families. All of this and they are paid on average less than $10/hour and face a turnover rate of nearly 50% nationwide. Before the pandemic started, there was a workforce crisis and that will only get worse as the already low wages will be impacted by states facing massive budgetary shortfalls.
As states begin to look at cuts to make up the financial deficits, people with disabilities and DSPs fear equally massive cuts to Medicaid, resulting in the elimination of needed services and wage cuts for direct support professionals. Medicaid is a state and federal government partnership, with funding and administration responsibilities on both sides. If Medicaid is cut, people with disabilities, their families and support staff will face dire consequences. It could mean limited or no services for people with disabilities, increased caregiving responsibilities for family members, and personal economic disaster for the workers. The House of Representatives included a specific funding bump for disability services in the coronavirus relief bill that they passed in May to make sure that people with disabilities and DSPs get the support they need. The Senate must include that dedicated funding for disability services in their version of the bill.
And we need to go further - Congress must also take necessary steps to support low wage workers. One critical step would be to make improvements to the Earned Income Tax Credit (EITC) that refund some payroll taxes paid by low wage workers. But the EITC doesn’t work as well for everyone as it should. Young people entering the workforce, people who don’t have young children, and people who make the lowest wages don’t get the full benefits of the refundable credits. This includes many DSPs. It’s crucially important to fix those problems and make the EITC better for everyone as workers face record job loss, wage reductions, and economic shocks.
We’re in a crisis. Congress needs to support people with disabilities and DSPs by strengthening Medicaid and the EITC. People with disabilities and their critical support staff are counting on action.