In responding to COVID-19, Congress must not overlook people with severe disabilities

Their caregivers need hazard pay and PPE funding

People with intellectual and developmental disabilities and brain and spinal cord injuries should not be omitted from the national response to COVID-19, Mikkelsen writes. (Bill Clark/CQ Roll Call file photo)
People with intellectual and developmental disabilities and brain and spinal cord injuries should not be omitted from the national response to COVID-19, Mikkelsen writes. (Bill Clark/CQ Roll Call file photo)
Posted April 20, 2020 at 8:12pm

As it should, Congress is moving quickly to ensure our front-line health care workers receive the resources they need to continue providing care. Unfortunately, an extremely vulnerable population is being left behind needlessly — and dangerously.

People with severe intellectual and developmental disabilities and/or brain and spinal cord injuries require some of the most intense forms of life-sustaining care. These Americans, young and old, often depend on 24-hour care and have complex preexisting medical conditions, making them more vulnerable to COVID-19. I’ve worked with this incredible population for more than 30 years, and the situation they are facing today is a dire threat to their lives and the system that cares for them.

Many individuals with complex medical needs reside in group homes specially designed for their needs. Unlike nursing homes, such group homes are usually shared by only three to six people, and residents live in one home — their home — for many years, often decades. These residences are staffed by direct service professionals, nurses and therapists 24 hours a day, 7 days a week, 365 days a year.

Like hospital staff, these caregivers are on the front lines of the COVID-19 response. They are essential in the lives of the people they care for, and they are doing heroic work that puts them and their families at risk. Without their commitment and expertise, one of the country’s most vulnerable populations would be left with literally nowhere else to go.

The need for these caregivers — who were recently and accurately described in The New York Times as “heroic” and “saintly” – is intensely high. To take one example of why, due to necessary social distancing guidelines, day programs that can provide opportunities for socializing and life and vocational training to people in our care for five to eight hours per day are closed. As a result, the people that access these programs are, like everyone, spending that time at home, resulting in higher demand for staff to provide care there. At the same time, retaining and attracting caregivers is extremely difficult when COVID-19 threatens staff with self-exposure, or their loved one falls ill and needs care, or their child’s school is closed, and they need to stay home.

COVID-19 is straining the system and the people who care for this population like never before. Yet inexplicably, Congress has so far left their needs unaddressed. This may be because it has largely directed resources to health providers through the Medicare program, and residential care for their most vulnerable constituents is largely paid for through Medicaid.

Congress must address this aspect of the crisis in two ways. One, it must provide dedicated resources for the retention and recruitment of this unique group of residential caregivers by offering “hazard pay.” Two, it must provide additional funding for providers to buy the personal protective equipment, or PPE, and other high-demand medical supplies that are needed to combat the virus. These funds must be made available to Medicaid providers of in-home care — and made available quickly.

The stakes for failure in this area are high. This patient population has nowhere else to go — they are already living at home. The rest of the health care system, whether in hot spots in big cities or rural areas with health care resources that are already thinly stretched, could hardly absorb this population.   

Without funding for hazard pay and PPE for Medicaid providers, the caregivers and systems that serve this group are being asked to do what Congress has already recognized in other settings needs additional support. People with intellectual and developmental disabilities and brain and spinal cord injuries should not be omitted from the national response to COVID-19.

Every day, this vulnerable population of citizens benefits from the heroic and saintly work of their caregivers. Congress should not overlook them.

Dr. Edwin Mikkelsen is the medical director of The MENTOR Network, a national network of health and human services providers offering home- and community-based services across the country. He is also an associate professor of psychiatry at Harvard Medical School and a consultant to the Department of Development Services at the Massachusetts Executive Office of Health and Human Services.