“It’s like a tornado has devastated us. But no one is coming to help.”
By Grace from New York
I have twin sons who have autism spectrum disorder and intellectual and developmental disabilities. One of my sons has significant needs and needs to attend a full-care and full-supervision day program. He graduated from high school in June 2020, but because of the pandemic, no day programs were open for him to attend.
Three years later, due to the pandemic’s devastation of adult services and programs, there are still no programs available for him, nor are there any programs for the graduates of the classes of 2021, 2022, and soon, the class of 2023. And there is nothing on the horizon for any of them.
My son has been home for three years without supports or services.
I had to leave my job to stay home and care for him full-time, even though I am a single parent, and I was the only source of income for my family. Now, we are struggling terribly, both financially and physically, trying to survive under these extreme conditions.
The devastation of the pandemic has not ended for our family and others like ours. My son has been left with no direct care support, no respite, no day program—no services at all. The main cause for this failure is the lack of funding for programs and staffing. It was a fragile system at best pre-pandemic, but now, it has been decimated.
The best analogy is that it has been similar to when a tornado levels a town, and the community must rebuild everything completely. That is what happened to the programs and services for adults with disabilities during the pandemic. But the big difference in our story is that no Red Cross has shown up to help. No FEMA. No one is coming to help.
We have been left out here in our decimated landscape for three years now. And the idea that Congress may want to further cut financial support to programs for this most vulnerable population is beyond comprehension.
Please take the time to look at what has happened, to see the suffering, and to offer the compassion and realistic financial support so desperately needed.
Many young adults with disabilities face similar challenges when transitioning out of school. Life for these students shouldn’t stop when their schooling ends. This problem is not new, but the COVID-19 pandemic has increased its severity and effect nationwide.
Congress must deepen its investment in Medicaid home and community-based services so people with disabilities have the support they need to take part in their communities throughout their lifetimes.