Read Robbie's op-ed at MyChesCo.
I’ve been working as a Direct Support Professional (DSP) with John for almost 17 years, which is most of his adult life (and mine). John is in the Intellectual Disability and Autism (ID/A) community.
John is completely nonverbal and exhibits problematic behavior, sometimes severe. When I first started working with him, he had nothing in the kitchen – no dishes, cutlery, or food – because he tried to use items to hurt himself or he would throw them at someone or something. Now he has a full pantry, cupboards, and refrigerator. He couldn’t go on an outing because of his anxiety, not even a quick day trip. He would often take off his shoes and socks and sometimes he would start running, which created a safety issue for him and others. Now I’m happy to say he’s enjoyed visiting Hershey Park, Lake Erie, Boston, the Rock ‘n Roll Hall of Fame, and Gettysburg.
Sometimes John’s mental health challenges manifest as aggressive behaviors that result in self-harm. He bites himself or hits the floor repeatedly. In one spot he wore out the carpet and began tapping the carpet tacks, which caused injuries to his hands. He has tipped over furniture and thrown small appliances and other household items out the window.
As his DSP, I keep John safe and secure. I administer his medications; work through major behavioral challenges with him; take him on errands, appointments, even vacations; cook with him; assist with his personal hygiene; and much more. He cannot survive without a DSP with him 24/7/365. I often work 56-64 straight hours. If something happens at 3 a.m., I’m there and working; if it happens at 2 p.m., I’m there.
John has grown and matured in the 17 years we’ve worked together. He has variety now in his daily life. I share my interests and knowledge with him, and he enjoys learning, doing new things, going new places. Doesn’t that sound like what all of us want – to have friends and a fulfilling life?
But people like John are at increasing risk of losing their homes and their lives as they know them. DSPs like me are leaving their jobs by the thousands. Our pay is roughly the same as someone who works in fast food, at a convenience store, or in a warehouse. Yet these people depend on us for their very lives. We spend hours every month doing paperwork for the government. We have extensive training and certifications. Yet we make the same (or less) than those with far fewer responsibilities and regulations.
I want to be John’s DSP. That’s what I want to do. But even I have had to consider making a job change. I’ve worked overtime so often I’ve missed family gatherings, picnics, even funerals – all because I needed the money or because there wasn’t another DSP available. Frankly it’s just awful to be forced to make those choices.
What would happen if I left my job for one that pays a more adequate wage? John would feel abandoned, like a family member had deserted him. He would regress, because his relationship with me is second only to his relationship with his own mother. His DSP knows him best – his medical history, current behaviors, daily routines, likes and dislikes.
Many DSP incomes are so low they qualify for public assistance like food and rent subsidies. DSPs deserve to make a living wage for what is a highly specialized, highly trained position.
John and thousands of others need PA legislators to fund the $65 million that service providers, represented by The Provider Alliance and others, have requested.
As legislators, please consider what people with disabilities experience. How successful would you be if someone changed your key employees every few weeks? This is what happens to people in the ID/A community because DSP turnover is so high.
The money is there, the need is there, the situation is critical. If it doesn’t happen now, when will it happen?