Southeastern Disability Archive

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For our first interview, we reached out to a friend of the project, Carson, from Alabama. An avid gamer and student, he’s working to become a licensed therapist. Here’s his story so far.

 

Carson’s earliest memory was when he was between three and four years old and attending an aunt’s Christmas party. Gathered around the television with his family, Carson fondly recalled playing Wii sports. It was his first experience with video games, which would later become a passion and an important part of his social life.

 

By this time, Carson already understood that he was different from many other children his age. While he and his brother’s shared muscular dystrophy diagnosis was the norm at home, school was a different world. He recalled that “it was a big deal entering pre-K. I was the only person, the only kid, in the preschool that used the wheelchair, and later on I remained the only one that used a wheelchair other than my brother.” Growing up in a small town, friends with similar experiences were often hard to come by, as were friends in general. Middle and early high school were particularly difficult. With his peers so concerned about fitting in, they were more hesitant to talk to Carson than they had been as young children. 

 

And it wasn’t just the children who made school difficult for Carson and his brother. For their first week of seventh grade, the boys were discouraged from attending school with their classmates due to accessibility issues. Stairs blocked Carson’s way to certain classes, and he ultimately wouldn’t start the school year until after a special lift was built the following week to transport his chair up the stairs. His school was also ill prepared to assist in planning for his adult life, with typical transition services such as college prep classes and self advocacy training not being provided. This left the responsibility of coordinating the transition from child to adult disability services almost entirely on Carson himself, and led to some devastating surprises.

 

While most adolescents see their twenty-first birthday as the key to their freedom, those with disabilities often dread it as a shackle to their independence. Their recognition as full adults means they can no longer rely on the pediatric services they have used their whole lives, meaning new doctors, social workers, and insurance must be straightened out in a very short time. New insurance also means new expenses, as Alabama Medicaid for adults often does not cover essential items its children’s counterpart will. For Carson, this meant a major and unexpected loss in his ability to care for himself, as his continuous glucose monitor and insulin pump simply failed to show up one day. 

 

“The biggest hit to me was Medicaid, they quit paying for a lot of my diabetic supplies,” he explained. “My Dexcom CGM with my blood sugar alert on my cell phone — it was so big to my independence because I didn't have to rely on somebody to continuously check my blood sugar.” His insulin pump also allowed him to administer the drug himself, something his muscular dystrophy makes impossible with a traditional needle and syringe. But despite many appeals from his doctors, his access to the pump and CGM is still cut off, and he now fears for the long term consequences of the condition. “I don’t have vision insurance anymore,” he explained, “and I've also recently been having problems with my feet, and because I'm a diabetic that's a really big deal. But Medicaid will not pay for me to see a podiatrist or optometrist, so I basically have to wait until I have an emergency.” Adults with Medicaid also have no dental coverage, which creates another avenue for simple health problems to go unchecked and become dangerous.

 

But despite the initial growing pains and ongoing health challenges, Carson is happier than ever and thriving in his new adult life. “I really started to become more integrated into the community of my town and my university,” he said. “Becoming an adult has been a big, like, step up from where I was previously.” He’s earned his associates degree in General Studies with a concentration in Psychology and plans to continue his education to become a licensed therapist. His experiences at college have also helped him form a close group of friends who share his love of gaming, with Carson now leading the gaming club and hosting Dungeons and Dragons. “Growing up it was kind of isolating,” he said of his disability, “but now, my social life has boomed. I’m very blessed that I found my group of people that I feel a part of.” Carson has also been fortunate to find employment and better vocational services to help him navigate his continuing education, a far cry from his days of preparing for college alone. But while many aspects of his adult life are on par with those without disabilities, one piece of the puzzle is missing: independent living.

 

Like any other young man, Carson wants a life of his own. He has his education, his friends, and employment, but a lack of supports complicates getting his own place. His muscular dystrophy means he needs a personal care worker to help with daily tasks, and his new dependence on others for managing his diabetes makes living alone potentially dangerous. “Where I live, in the middle of nowhere, there’s no resources to help me,” he said of living independently. Though he receives funding to hire a worker, he hasn’t been able to find someone local to fill the position, leaving Carson’s parents to be the sole caregivers for both him and his brother, who has significantly higher support needs. With the brothers and their parents aging, their current system has an expiration date, but the services available don’t show a clear path forward.

 

“I can’t afford to pay someone to move in with me,” Carson said, frustration apparent. His state funded services, which currently reimburse his parents, only cover up to 25 hours a week of personal care. This would leave Carson either alone or paying out of pocket for up to 143 hours of care a week — costing him $1,036 at minimum wage, which would be roughly his entire monthly check.

 

Even with a job, money is a huge barrier to Carson’s ambitions of leaving the nest. When asked if there was anything he would change about his life, he replied “the limit of two-thousand dollars in my bank account,” without hesitation. Medicaid recipients are only allowed $2000 dollars before their lifesaving insurance can be revoked, and that simply isn’t enough for Carson to pay his own way. To leave home, he must secure accessible housing, a way to manage his diabetes around the clock, a reliable source of personal care, a wheelchair van of his own, and the money to sustain it all. Securing transportation is especially difficult, as his need for his electric wheelchair means he “can’t just call an Uber” like other young adults. 

 

But all hope isn’t lost for Carson. His blossoming social life has allowed him to make huge strides toward becoming independent, and he remains cautiously optimistic that the right situation will come along. With the right people in the right place, Carson could easily thrive in a household with his peers, with a hired worker handling more skilled needs and friends pitching in throughout the day. “I’m waiting for that one in a million situation to move out,” he says, adding that if accessible housing with support was available, he “would take it immediately.”

 

A sincere thank you to Carson for agreeing to this interview. If you or someone you know would like to share your story with the archive, contact us at seda-archive.com/Share-Your-Story/ or email sotheastern.disability.archive@seda-archive.com