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UPDATE: The Real Deal: Medicaid Runaround on New Wheelchair for Local Boy
UPDATE: (5:30pm 7/9/13) Less than 24 hours after Izzac Whaley and his family shared their story with CBS6, the New York State Health Department has approved his Medicaid application for coverage of the wheelchair. The new chair has been ordered and should arrive in the next few weeks.
CORINTH—Normally CBS6 is exposing federal and state programs that shell out millions of dollars to people who don’t qualify for or deserve the benefits. Izzac Whaley’s story appears to be the very opposite. The 12-year old from Corinth is in need of a new wheelchair but he, his parents and his doctors seem to be getting quite the run-around from Medicaid.
Izzac Whaley has Spinal Muscular Atrophy or SMA, a degenerative illness that has taken away his ability to walk. He’s always had a wheelchair but since October, he has had to use it 24/7. “We knew there was a chance that he could lose the ability to walk, it was a possibility but even now they can’t tell us what the prognosis will be,” says Sarah Whaley, Izzac’s mom. What she and Izzac do know is that he has outgrown his current motorized wheelchair which he’s had for about four years. “He's cramped, there's no room, his legs are jammed in…he can’t lift his weight to be able to shift himself around,” Sarah says.
Izzac’s parents, doctors and therapists requested Medicaid approval for a new power wheelchair that will also give him the ability to be raised into a standing position. He recently tried out a model of the chair at school, “we turned the corner and he was at-height with all his friends and they were like "go Izzac", they were just having a great time,” Sarah says. The standing position also allows for better circulation, less joint and muscle stiffness, according to his doctors and it’ll help the pre-teen be more independent in everyday life.
The problem? It’s been months since the request was made, Medicaid hasn’t ruled yet and Izzac is too big for his current chair. “They just keep putting up road blocks,” says Sarah who has received countless letters from The New York State Department of Health which oversees Medicaid in New York, requesting more information about why the chair is medically necessary. The department even asked for a video of Izzac using a chair it hasn’t agreed to help pay for yet. “Izzac has a great team of doctors and therapists behind him and I don't feel like they should be questioned on why they feel he needs this chair, they know what they're doing, they've dealt with him for years,” Sarah says.
The chair is expensive, the cost would be about $20,000 but it should be the last one Izzac needs. Aside from maintenance on it, the adult-size chair comes with a warranty. “I want to stand again,” Izzac told CBS6 Investigative Reporter, Jennifer Lewke, “it will help with a lot of things,” he added. Typically, Medicaid covers a new chair for wheelchair bound patients every 5-7 years depending on necessity. The Whaley’s request is a bit sooner than that timeframe but it is the first time they’ve made a request since Izzac’s medical condition changed and he became permanently wheelchair-bound.
A spokesman for the New York State Department of Health tells CBS6 that typically when a request is made for a specialized device like this chair it takes the Medicaid office 3-4 weeks to make a determination. In this case, he says, the department was waiting for follow-up information from the wheelchair vendor that has just arrived. Now that all the paperwork is in order, the spokesman says a final determination on whether the chair will be covered will be made by the end of this week and relayed to the family.
If you’d like to learn more about Izzac and SMA, visit the family’s facebook page: https://www.facebook.com/IzzacWhaleysFightAgainstSpinalMuscularAtrophy