Caregivers of Americans With Disabilities Cannot Be Left Behind in COVID-19

COMMENTARY

The threat of the COVID-19 pandemic is concerning to most Americans, but it is particularly critical for individuals with intellectual and developmental disabilities (I/DD) and those with acquired disabilities as seen in people with brain and spinal cord injuries or stroke. Group homes, where people with these types of disabilities often live, are struggling to cope with individuals who are sick with coronavirus. Stories coming out of these group homes are not only heartbreaking, but they also tell us something is wrong and requires an urgent remedy.

It is a challenge for many to face the fact that we cannot see our loved ones or go outside with others. It is exceptionally hard for people with complex medical needs, many of whom thrive with social interaction, to digest that this new reality is best for everyone’s health, especially theirs. This is putting an enormous strain on the people who care for them and adding to the stress care providers are already experiencing from a lack of personal protective equipment (PPE) and testing.

People with I/DD and acquired disabilities have preexisting conditions that can make the COVID-19 virus life-threatening if they or someone who cares for them has contracted the virus. This means that PPE designed to stop the spread of the virus and COVID-19 testing to determine who has or has not contracted it, are absolutely essential for these vulnerable individuals to weather this storm. Unfortunately, making sure that these dedicated care providers have funding and resources for such essential supplies has not been a priority in the federal COVID-19 response. 

Direct support professionals, nurses, therapists, and support staff in group homes are the hidden heroes of this pandemic as much as doctors, first responders, and hospital workers. Without them, people with complex medical needs would be left without the in-home, life-sustaining care they need to survive. But care providers currently face an uphill battle and are stretched-thin for resources.

We have spent our careers advancing medicine and medical technology for people with complex medical needs. We know first-hand the importance of individualized care. Direct support delivered in group home settings allows people with I/DD and acquired disabilities to access the medical care, therapy, community integration, and behavioral management support they need to live a full life. The professionals and support staff who administer this type of care are specially trained and uniquely qualified to navigate medical complexities and meet each person’s physical, cognitive, behavioral, and emotional needs at the pace that is right for them.

Without care at home, there is nowhere else for people with I/DD to go. If they get sick, they risk admittance into hospital systems that are already bursting at the seams. In this climate, essential health care providers like those caring for people with I/DD or brain and spinal cord injuries in group homes are putting themselves, their families, and the people they care for at increased risk of exposure just by continuing to show up to work each day. Unlike many Americans, they cannot work from home and require PPE to stay safe at work.

The choice they face is impossible: care for people who would not survive without support and risk exposure, or stay home to protect themselves from heightened risk, while the individuals in their care suffer.

Lack of funding and resources for group homes is a legitimate and urgent concern and one that Congress must address by providing funding for mandatory testing, additional PPE, and hazard pay to recruit and retain care professionals and support staff for this vulnerable population. The Department of Health and Human Services (HHS) also plays an important part here. The Centers for Medicare & Medicaid Services (CMS) often face the challenge of identifying and reaching Medicaid-only providers because Medicaid resources are funded by both federal and state governments. HHS needs to treat Medicaid providers equitably to Medicare providers, who have already received resources. We urge policymakers to ensure HHS is looking out for Medicaid-only providers too.

The lives of hundreds of thousands of Americans with I/DD and acquired disabilities and the caregivers who support them are at the mercy of Congress and HHS. Turning our backs on them during this national emergency cannot be the way this story ends. It’s time to raise our collective voices to ensure policymakers prioritize the health and safety of our nation’s most vulnerable through immediate COVID-19 relief funding.

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Jeffrey T. Barth, PhD, ABPP-CN is the John Edward Fowler Emeritus Professor of Psychiatry and Neurobehavioral Sciences at the University of Virginia School of Medicine. He is also a member of the Clinical Advisory Council for The MENTOR Network.

Mel Glenn, MD is an Associate Professor of Physical Medicine and Rehabilitation at Harvard Medical School, Division Chief of Brain Injury Rehabilitation at Spaulding Rehabilitation Hospital Network, and National Medical Director of NeuroRestorative.