Secretary of HHS, Robert Kennedy, Jr. did not show up to listen to us. We all learned from each other and are more committed to action. The Autism Community is more diverse in every way and more united than ever. As a member of the Panel of Professional Advisors of the Autism Society of America, I am deeply grateful for a voice at that table as a parent of a nonspeaking adult child and as a clinical psychologist.
As Congress scrutinized sweeping HHS budget proposals, advocates demanded inclusion, protection, and person-centered reform
“We don’t need to divide our community. We need to come together to protect those of us who are at risk of being harmed by the changes. It is not just the concept of whose Autism is more valid…or who is more worth protecting. Because it is all of us.” — Jules Edwards, Autistic advocate and parent of Autistic children.
My son, Tariq, is now 45 years old, and he has been in residential care since he was 9 years old. Since the summer of 1988 Tariq has not lived with our family. He resided and went to school at the Kanner Center of the Devereux Foundation until 2003. Since then he has lived in a group home for people with developmental disabilities run by an agency called KenCrest. He needed round-the-clock care because he does not understand danger, did not sleep safely through the night, and was a constant threat to wander or run away. He climbed down the firescape of our apartment one night! Fortunately, I found him at the playground a block away, playing joyfully on he swings. Going through due process to get a residential placement was one of the worst experiences of my life. I did find peace and acceptance knowing that my child was safe.
A few years later, an autistic boy in our neighborhood died on the train tracks at night when he got out of his home. This was the fear I lived with when Tariq lived at home.
My son’s services are funded b y Medicaid. As I shared at the roundtable, “If Medicaid cuts were to happen, my son’s life would be in danger,” said Dr. Robert Naseef, a psychologist and father to an Autistic son. “The tragedy in my life would be if my son didn’t have around-the-clock care – that he couldn’t be alive today.”
He still puts his head on my shoulder.
