disability rights

State Denies Wheelchair User Robotic Arm

Carissa Decelles, who has spinal muscular atrophy and uses a wheelchair, says a robotic arm would help her be self-reliant, but the state Department of Social Services is refusing to pay for the device.

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It’s an expensive piece of equipment, but it would allow a Willimantic woman to maintain her independence. However, the state is refusing to pay for it, calling it experimental.

“There’s a lot of my world that’s not super accessible to me because I can’t reach it or I can’t pick it up,” Carissa Decelles says. 

Decelles has spinal muscular atrophy and uses a wheelchair. A robotic arm would be life-changing. 

“Just being able to retrieve objects off of shelves or utilize my whole kitchen, I can’t use the whole top half of my kitchen by myself,” Decelles says. 

There’s only one shelf Decelles can reach in her refrigerator. 

“My arm strength is also pretty limited. Very limited range of motion, very limited range of reach. I also can’t lift half a pound or a pound without a good deal of effort,” Decelles says. 

But she was able to open her refrigerator, put something in the microwave, and pour herself a glass of water with the robotic arm. 

“I’m kind of a fiercely independent person so I like to be self-reliant during the day. So I’m usually alone during the day, but that requires a great deal of planning to make sure I have literally everything I could possibly need,” she says. 

But the Department of Social Services says the robotic arm she demonstrated is experimental and they won’t cover the cost. 

In a letter denying her payment for the device, DSS says “This item is 'unproven, experimental or of research in nature' because the limited available research has not shown it to be safe or effective in treating your condition.”

Decelles' attorney Sheldon Toubman of Disability Rights Connecticut says private insurers are paying for these robotic arms. 

“It can’t really be experimental when at least 15 other states that we know of have Medicaid programs that are paying for it,” Toubman says.

Toubman says the next step is federal court if DSS won’t reconsider. 

The Department of Social Services declined to comment for this report. 

“Technology and advancement in technology is like a huge win for us and it gives us so much independence so it’s so frustrating that they will not recognize that,” Decelles says.

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