I was lucky. Awkward, but taught to make eye contact. Obsessed with trains, but my schoolwork didn’t suffer. Capable, though stubborn when asked to change my routine.

But I didn’t know what was wrong with me. When I was young, Asperger’s Syndrome (considered an autistic condition) wasn’t yet commonly understood.

My parents had concerns about my development, but no one knew how to help. I was colicky, easily startled, and screamed if touched by grass. I preferred to play alone. I had so much trouble socializing that my parents delayed enrolling me in kindergarten. I’m not sure it helped. A classmate once saw me picking my nose and asked what I was going to do with my winnings. “I’m gonna roll it around between my fingers until it dries,” I’d responded.

I later tested into my school’s gifted support program. I didn’t have the intellectual deficits sometimes seen with autism, but I floundered in many other areas. Throughout high school and college, I struggled with friendships and suffered from depression. My obsessive compulsive disorder once caused me to drive the same stretch of road for hours because I couldn’t do it “correctly.” I re-traced my route until satisfied I’d driven it “perfectly.”

The first person to accurately assess my condition was my ex-wife. After we married, she went into nursing and recognized the pattern. Our divorce was filled with conflict over the children, leading to my formal diagnosis at 36 by a custody psychologist.

Despite the fallout from my divorce, I landed on my feet, luckily. I now work for a non-profit that serves the Intellectual Disability and Autism (ID/A) community:  the lucky ones not so lucky.

In Pennsylvania, such services are underfunded. Currently, 13,000+ people are waiting for them. Those already getting help often don’t receive enough because the field is critically short on Direct Support Professionals (DSPs). Abysmal reimbursement rates cause trouble attracting talent for organizations like mine; we can’t pay much more than fast-food restaurants, but the work is much harder.  

The average DSP wage distilled from today’s rates is $16.90/ hour. Some estimates put the local living wage for childless adults above $19.10/ hour. Organizations like mine can’t overcome this gap without rate increases.

Fortunately, Governor Shapiro has heard us. He recently requested a $217 million state budget appropriation for ID/A services. If passed into law, it would trigger a $266 million federal match.

This would translate into increased wages and sustainable expansion that will shorten waitlists and improve care. The higher wages would be re-spent locally, buoying businesses as DSPs pay for essentials. There’d likely be less reliance on public assistance benefits among DSPs, too.

I only recently start- ed paying attention to the ID/A community, despite unwittingly being a member of it for so long. Now, I realize how broken the system is for those profound- ly affected by ID/A. Please ask your state legislators to support the governor’s budget. My organization serves some of the best people I know. I value them, and I ask you to, also.
John Hamelly is a native of Mercer County who left to find his fortune and returned when he realized it had been here all along. He holds degrees in emergency services and finance and is the father of two daughters, Molly and Penelope.

Published The Record-Argus - 03/29/2024