Mobility advocate fights for providers

Sunday, October 30, 2011

WINDSOR, N.Y. - Donna Ponessa might leave her wheelchair and ventilator behind when she competes in horseback riding, but mobility equipment and other HME is at the forefront of her mind when she supports the industry in Washington, D.C., and Albany, N.Y.

Ponessa has Devic's disease, a rare autoimmune disorder in the same family as multiple sclerosis. She's had a tracheostomy for 20 years, uses a power wheelchair, ventilator, oxygen concentrator, catheter and a bed designed to prevent pressure sores.

Despite all this, she is in the process of qualifying for the London Paralympics and works 24 hours a week for others with disabilities--that's on top of caring for her horses.

"I live with a horrific disability, and yet my quality of life is so fantastic," said Ponessa. "If I were to lose that, I would lose my drive to keep living. Why bother if there's no quality?"

Ponessa advocates for the HME industry because she sees Medicare and Medicaid cuts as threats to her and others' quality of life.

"We, as users, depend on our vendors and our dealers and the equipment that we use," said Ponessa. "It makes a difference between having a life and merely existing."

Ponessa's message to politicians is simple: Consider how slashing Medicaid and Medicare funding will affect those who use HME. And if they have to focus on the budget, look at it in the long run, in terms of how much is saved by keeping people at home, or by giving them the equipment they need to avoid hospitalization.

"I like to go in person and I enjoy the jaw drop when I tell them all that I'm able to do," said Ponessa. "Part of it is because I've got a fierce drive and a passion for living. And the reason that I can have that, is because I have access to most of the equipment that I need to make my life possible."

She prefers to work at the state level because representatives there know her. She feels that she is making a difference.

"When Medicare is looking at a 60% budget cut and only a 24% budget cut goes through, I like to think that it's because of my advocacy," said Ponessa.