People with disabilities told state and federal Medicare and Medicaid officials that rules governing the programs are not logical, efficient or humane.
Alex E. Trujillo, associate regional administration of the U.S. Health Care Financing Administration, and Alex Aguilar, a manager in the U.S. Office of Civil Rights, met with about 20 members of the Disabled Rights Action Committee on Friday. The state's administration, represented by Duane Park and Blake Anderson, also responded to the criticisms.DRAC members cited a host of personal experiences:
- Julian Sanchez is young and healthy, although he uses a wheelchair. But in order to keep the home-health services that get him up in the morning and put him to bed at night, he has had to give up the freedom of going outside. He is allowed one trip to get a haircut each month and two to go to church. If he were to exceed that, even to visit a neighborhood park with friends, he would no longer be considered homebound and eligible for very basic assistance.
- Jean Hunt lost assistance because she had a few friends who could take her out occasionally. She is also on oxygen, and program regulations won't pay for portable oxygen, even to go to a physician, unless her blood-oxygen level sinks dangerously. She, too, is a prisoner, she said.
- Debbie Bettess uses a wheelchair and is blind. Her artificial eyes need to be cleaned every six months, but Medicaid won't pay for the service. Without it, she gets infections, which Medicaid must then pay to treat.
When Utah's electronic benefits transfer program goes statewide, Bettes worries that she will have to turn control of her very limited money over to someone else. Attendants and aides aren't allowed to drive their clients anywhere, so she would be forced to hand her access card to someone and send them to cash her check. "I just don't feel comfortable letting an aide take my card and do my shopping for me," she said. "We've all had things stolen at some point. I feel like I'm in jail."
"No, in jail you get to go out and play," said Bonnie McGee.
- Pat Mackay has diabetes and epilepsy. When she fell in love, she couldn't marry because she would lose her Medicaid, and her would-be husband's insurance would not cover the pre-existing conditions for at least a year. She couldn't take the chance. "Medicaid encourages dishonesty, because it is so unreasonable. Without insurance, I would die."
- Medicaid paid for a number of reconstructive surgeries for a man who "lost his face" in an accident. But when it came to paying for the final needed dental work that would finish the process, the system didn't come through and much of the other surgeries were wasted.
People with disabilities also complain that people are being forced into nursing homes at great expense when they only need attendant care. They're healthy, but disabled.
Blind people would like regulations printed in Braille, since caseworkers are generally unwilling to read documents to them or help them fill out forms.
Different agencies and their employees give "diametrically opposite" information about programs and eligibility. Quality control also seems inconsistent, they said.
Trujillo and Anderson agreed that the system is "screwed up" but said the criticisms and comments will be used to help set changes.