After a year of the COVID-19 pandemic, there are still many unanswered questions about how our states failed to protect individuals with autism and other developmental disabilities living at home, in group homes and in other congregate settings. The Autism Society believes that any investigation into the circumstances that led to these deaths should focus on the underfunding prioritization from state and federal officials, and also identifies opportunities for better preparation to avoid future loss of lives.

“As early as March 13, 2020, the Autism Society of America raised its concerns that the autism community not be forgotten or neglected as we entered into unprecedented times,” states Christopher Banks, President and CEO of the Autism Society.  “We created the nation’s first COVID-19 toolkit specific to the autism community to provide topic-based resources to individuals and families with autism. One year later, many of our concerns for the autism community remain, as we advocated most recently for prioritization with the COVID-19 vaccine.”

Throughout our nation’s ordeal, we have seen failure to provide COVID-19 testing, personal protective equipment (PPE), attention to the needs of direct support professionals, including hazard pay, and other direct services, such as respite care for caregivers. The Autism Society of America brought these concerns to our elected officials on a regular basis. We shared it with our donor base which resulted in the Make Waves Family Foundation donating more than 53,000 masks for the Autism Society network to distribute to congregate settings in what were deemed “hot spots” at the time. These much needed masks were provided to Nassau and Suffolk Counties in New York, Washington,DC, Florida, California, Texas and many other targeted locations across the country. In addition, our affiliates were delivering food and hard-to-procure cleaning supplies to group homes in their communities.  

In New York State alone, it is estimated that more than 352 residents of group homes have died in the past year from COVID-19, according to the State Office for People With Developmental Disabilities. Arguments show that this is likely a gross undercount and that the true number is much higher.  

“Every death from COVID-19 is a terrible loss, the inexcusable tragedy is that many of these deaths possibly could have been prevented with attention and appropriate resources from the state and federal government,” states Banks.

The Autism Society of America continues to advocate at the national level and to assist our 75 affiliates to demand more attention to the needs of people with autism. We continue to urge that individuals with autism and other developmental disabilities be prioritized for access to vaccinations.  

We are pleased that Congress passed the American Rescue Plan Act (HR 1319), which was signed by President Biden. The new law provides states with a temporary 10% boost in federal Medicaid matching funds for HCBS through March 2021, which will infuse $12.67 billion in extra funding. This funding can and should be used to quickly direct attention to get vaccines into the arms of people living in homes and group homes as well as to their caregivers and direct support professionals (DSP). States should also use these funds to provide hazard pay to DSPs, institute testing and contact tracing procedures, and to provide respite care, behavioral health and other services to these individuals and their families. 

Congress should continue this funding as long as it takes to create an infrastructure in states to reduce waiting lists for home and community-based services and to ensure that these congregate settings are not overcrowded and under-funded. People with disabilities and those who are aging must not be under-valued in our society.