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Medicaid reform is urgently needed

Here is a personal story about Medicaid's use of our tax dollars. Our 28-year-old daughter, Jessica, was born with a severe developmental disability. She is unable to walk, has osteoporosis and bilateral hip dislocation. Jess has successfully utilized a Quickie 2 K4005 wheelchair for 15 years. She is eligible for Medicaid due to a permanent disability that falls within one of the six classifications. She was diagnosed before age 22 and has substantially limited ability to function and care for herself.

New York State is drowning in Medicaid expense, waste and fraud. Numerous laws and regulations guide the process, including Social Service Law, New York Codes, Rules and Regulations and New York State Medicaid Program DME Equipment Guidelines, which this experienced parent is having difficulty navigating.

Regulations state that people can replace their wheelchair, if necessary, after five years. Jessica uses her wheelchair 14 hours each day. Her current chair is 8 years old. The seat is too narrow, and the hardware is breaking down. It is clearly time for a change.

We ordered a new Quickie 2, measured Jessica for appropriate seating and submitted our order to insurance and Medicaid. Insurance quickly approved the chair and will pay 50 percent. Medicaid denied the chair because it believes Jessica was not independently propelling herself. It suggested a lesser quality chair called Lightweight K0004. We have video and documentation to support our claim of independent propelling. The difference in price between the two chairs is $500.

The Lightweight chair is more difficult for the user to propel and could result in a loss of independence, along with potential injuries from struggling to move the wheels, which could ultimately cost Medicaid more money.

We requested a fair hearing to demonstrate Jessica's independent propelling of her chair. The hearing included staff from her group home, who spoke about her independent movement of her chair, an administrative law judge, a lawyer from Neighborhood Legal Service and my husband and I. On a conference call from Albany was a fair hearing representative. When you consider the folks in the room, hours of planning, space in the Rath Building, time reviewing the case and mounds of paper work, our state spent more than the $500 discrepancy.

Last month, we received a letter from the Medicaid office stating that it wants additional documentation establishing a medical need for the Quickie 2. The new documentation will need to be written, read, discussed, reviewed and another ruling will be issued. If this ruling is denied, we will request another fair hearing and start all over. Meanwhile Jessica is sitting in an 8-year-old wheelchair that no longer supports her size and is slowly breaking down.

Why don't we, her parents, just pay the $500 discrepancy? We were told that Medicaid does not allow payments from recipients and their families. It either accepts payment in full or declines the order. How many families would gladly supplement a payment? Can you imagine the savings? We would have eliminated all of the above and saved the state $500.

I ask fellow New Yorkers: Do you think this is a good use of your state money? We are one story illuminating waste -- how many more stories are out there? We are caught up in regulation, guidelines and confusion. Where is the human being in this labyrinth of red tape that says stop! I wish I had the power.

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Vickie Rubin, who lives in Williamsville, is battling red tape to get her daughter a new wheelchair.

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