With so much at stake as Congress considers the next stimulus package, the cacophony of competing voices is deafening. Absent from the conversation, though they are at higher risk for the coronavirus, are children and adults with intellectual and developmental disabilities (I/DD), many of whom cannot speak for themselves.
Their lives depend on Medicaid, not only for healthcare but also children’s special education services and therapies, adult programs, job supports and life-sustaining assistance to live in the community, whether on their own or in congregate living. Direct support professionals who help them navigate the world are woefully, shamefully underpaid. The work is hard and most certainly essential.
During an economic slowdown, Medicaid becomes the perennial target of state and federal lawmakers claiming “we just can’t afford it.” Here are the voices of some of the people who were interviewed recently and who would be devastated by those cuts.
Ben Schklair, 28, was born with hydrocephalus, and has I/DD and anxiety. He lives with a housemate in a South Portland apartment, with the support of a direct support professional who helps him cook and manage his medications. Due to concerns about COVID-19, Schklair’s parents took him home with them for three months, an option that is not available to many adults with disabilities. Soon afterwards, the two men with disabilities who live upstairs from his apartment contracted the coronavirus and were hospitalized. Several of the direct support professionals who serve all four men also fell ill.
“It’s overwhelming,” Schklair said. “Group homes are the biggest target for COVID. My life got flushed down the toilet, and it’s not coming back. I’m not able to go to work or see my counselor.”
Schklair recently chose to return to his apartment, though it makes him nervous and terrifies his parents.
The pandemic is not only especially dangerous for people with disabilities, it’s also particularly isolating.
Anna McDougal, a 40-year-old woman with Down syndrome, lives on a farm in Wiscasset with her family. Making art is her passion. Until the pandemic shuttered the program, McDougal spent most of her days at Spindleworks, a day program for adults with disabilities. Spindleworks is the center of her life, and it’s been difficult adjusting to life without it.
“Change is hard for people with disabilities. Some of us don’t know how to speak up for their needs and wants. We like our schedule, and that’s the hardest point there. We’re not able to see friends,” she said.
Emerson, 10, of southern Maine, lives with ADHD and anxiety. She and her sister, Carrigain, 12½, who has Down syndrome, just ended their school year online.
“My anxiety is going to an all-time high,” said Emerson. “My ADHD, I’ve got a lot of ants in my pants because I’m tired of the house. Organizing myself to be able to do my schoolwork is very hard, in my brain and in my room.”
“I was terrified when I got that news [of the pandemic],” Carrigain said, “I was like, how awful kids with disabilities cannot go out and explore the world. It’s frustrating when you get no possibilities of getting out there.”
Kate Riordan, 40, has cerebral palsy and lives in a Brunswick group home. She has limited mobility and relies on gestures and her iPad to communicate. Kate’s mother, Debbie Dionne, said, “Without the ability to speak, Kate feels anxious and frustrated. Now she can’t leave her home, see people or attend a beloved day program. Without her physical therapy routine, and the security of family and friends, her skills, like being able to safely and independently walk, have deteriorated. She’s walking lopsided now. It’s devastating.”
Governors are begging Congress for state assistance to provide funding for essential services. I urge lawmakers to listen to the voices of the people who have the most at stake but often remain invisible while others debate their future.
“I try to think about the positive,” McDougal said. “One day at a time.”
Lisa Wesel of Bowdoinham is a parent of an adult daughter with a rare genetic disorder — Dup15q — which causes intellectual and developmental disabilities and epilepsy. She serves on the board of Community Connect Maine and is a freelance writer and editor.