general newsletter

Rallying for Disability Rights in the time of COVID-19?

April 27, 2020

By Peter V. Berns, The Arc

It has been more than a month since the Coronavirus changed our day to day life and impacted the health and wellbeing of millions of Americans. But did you know that the current pandemic poses an even greater risk to people with intellectual and developmental disabilities, common conditions like Down syndrome, Autism Spectrum Disorder, Fragile X syndrome, Cerebral Palsy, Fetal Alcohol Spectrum Disorder and other diagnoses, than it does to people without disabilities?

People with I/DD are more likely to have underlying health conditions that leave them more susceptible to the virus, and recent data indicates that they are being hospitalized and dying from COVID-19 at higher rates. Unfortunately, if they cannot be adequately supported living in the community, they are at high risk of ending up in nursing homes, state institutions, and other congregate settings which, as we have seen, have been at the heart of the disease spreading.

Their caregivers, including both family caregivers and developmental disabilities provider agencies, are being stressed in many ways.

  • Direct Support Professionals (DSPs) that work with people with disabilities supporting them at work, home and in the community are often providing supports that simply cannot be done from 6 feet away. DSPs face many of the same challenges and risks currently being experienced by health care workers, yet this vital workforce does not have access to the personal protective equipment (PPE) and the supplies needed to safely serve individuals with I/DD who are quarantined or sheltering in place.
  • Individuals with I/DD are struggling with a loss of services that support their being included in their communities. People with disabilities are being further isolated under circumstances they may not fully understand or manage without necessary physical, emotional, and behavioral support. Students with disabilities are struggling to participate in remote schooling, without necessary accommodation and supports. Increased isolation and stress also are contributing to a higher risk of violence and abuse.
  • Day Supports – There are more than 620,000 adults with I/DD who receive day program and employment services, and thousands more that qualify but are not currently in service. In most states, all day programs are now closed; other states are likely to follow suit. People with I/DD are being isolated in their place of residence. This includes group homes for some, and the family home for many more. Chapters of The Arc and the DSP workforce are struggling to continue to support those individuals remotely so that they continue to have a meaningful way to spend the day and families are struggling to fill in the gaps for support, if they are able.
  • Residential Supports – There are more than 680,000 adults with I/DD who live in some type of supported housing, more than 790,000 who live alone or with a roommate, and thousands more who are eligible for services, but are on waiting lists. For people with I/DD who live in a group home or other supported residence, as well as those living alone, they are now sheltering in place. Chapters of The Arc and other providers are struggling to serve those residents 24/7, including supporting their understanding of the pandemic, meeting their daily needs, including personal care, providing meals and providing for health and safety.
  • Family Supports – More than 3.6 million individuals with I/DD live in their family homes. Due to the closure of many of the day supports and of schools, family caregivers are having to leave their jobs and stay home with their family members with I/DD who can’t be left home alone. Many family members are struggling to provide adequate support without additional help and are unable to leave home to purchase groceries, pickup medications, or needed supplies. They struggle too with many of the same challenges and risks as the paid caregivers in group homes, in terms of safety, emotional and behavioral support, and meeting basic human needs. Family caregivers are also experiencing job loss and unemployment, undermining their financial capacity to provide care and support for loved ones with I/DD.
  • Hospital Treatment – Many people with I/DD and their family members are afraid of how they will be treated if they are hospitalized. Given discriminatory provisions in state health department and hospital planning documents, they are concerned that in the event of shortages they may be denied access to ventilators, medication or other life-saving treatment. They have question about absence of supports needed to effectively communicate with their medical providers. Due to the need to contain the spread of the virus and the PPE shortage, family members, DSPs, and other similar disability service providers may not be allowed in the room with the patient to assist in communicating with medical professionals making critical treatment decisions.

While the legislation passed by Congress over the past several weeks to address the Coronavirus pandemic will help in some ways, many of the grave issues facing people with I/DD, their families, and workforce, were ignored. Like other neglected, vulnerable populations, the disability community is organizing, mobilizing and demanding that our needs must be addressed in the 4th round of legislation to combat COVID-19.

Here is what Congress MUST do:

Funding for a Medicaid grant program to support access to home and community-based services. To address the needs of people with I/DD who need care at home, Congress must approve funding to expand home and community-based services and minimize the risk of people with disabilities being forced into institutions. States need these additional, new dollars to minimize waiting lists for home and community-based services, and to hire enough workers, provide wage increases and overtime pay to the workforce.

Personal protective equipment (PPE) for direct support professionals. This is urgently needed to protect the health and safety of this critical workforce. Direct support professionals must be designated as essential workforce so that they have access to the PPE and medical supplies they need.

Paid leave for caregivers. As things stand now, a parent of a child whose school is closed due to a government closing order is entitled to paid time off from work and the employer is eligible for tax-credits to cover at least a portion of the cost of providing paid leave. Not so for a parent who must take off work to care for an adult with disabilities whose usual care provider is not available because of the pandemic. As disability service providers have been ordered by government agencies to stop some services, families are scrambling to provide care to their family members with a disability, often at the expense of their job. Congress should include all family caregivers in the emergency paid leave provisions.

Over the past several weeks, through our #WeAreEssential Campaign, The Arc has mobilized tens of thousands of people with disabilities and family members to implore their Members of Congress that when they return from the Congressional recess next month, they must address these unmet needs. We are going to have to be a lot louder in the coming weeks, as we face the grim reality of this virus spreading further, putting the health, wellbeing, and lives of people with disabilities, their family members, and direct support professionals on the line. We invite you to join with us.

Peter Berns is Chief Executive Officer of The Arc and serves on the Board of Director of the National Human Services Assembly.
The Arc is the nation’s largest and oldest nonprofit federation advocating on behalf of and providing services and supports to people with intellectual and developmental disabilities (I/DD). Our constituents include people with a variety of needs and conditions, such as Down syndrome, Autism Spectrum Disorder, Intellectual Disability, Fragile X Syndrome, Cerebral Palsy, Fetal Alcohol Spectrum Disorders, as well as the family members and organizations which support them. The Arc serves people with disabilities through our network of more than 600 chapters in 47 states and the District of Columbia. Our mission is to promote and protect the human rights of people with I/DD and actively support their full inclusion and participation in the community throughout their lifetimes. Author’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.