Cuts in Michigan affect middle-class families whose children have disabilities

From The Grand Rapids Press in Michigan. In the picture, Tracey Pitchellis, of Caledonia, holds on to her daughter, Danielle, 17, who suffers from cerebral palsy. Pitchellis is concerned about the health benefits Tracey is losing due to cuts in Children's Special Health Care Services.

Cuts to some health benefits for middle class families with severely disabled children has advocates worried. They fear that 30 years of progress which has stopped parents from placing kids in foster homes to qualify for costly specialized care is being chipped away.

The cuts to Michigan's Children's Special Health Care Services eliminated $2.2 million that helped families with income too high to qualify for Medicaid pay for special incontinence supplies and transportation costs to get to care centers like Mary Free Bed Rehabilitation Hospital in Grand Rapids.

Many of those same families already have been affected by cuts to community mental health departments, which eliminated respite services for caregivers.

"I'm so concerned we're going to take a step back to pre-1980, when these families were really between a rock and a hard place of not being able to financially, emotionally and physically care for their children," said Judy Serano, a board member for United Cerebral Palsy of Michigan.

James McCurtis Jr., spokesman for the Michigan Department of Community Health, said the cuts to Children's Special Health Care Services are unfortunate, but are being felt across-the-board and are necessary because of budget deficits.

"These are tough and we understand that families are being impacted by this heavily," McCurtis said. "The state simply doesn't have the money ... we've made a lot of cuts in a lot of different places."

The decision affects folks like Caledonia resident Tracy Pitchellis, whose one-income family is now struggling to cover the $130 to $300 a month cost of the special medically supplied diapers for her 17-year-old daughter, Danielle, who has severe cerebral palsy.

Pitchellis does not work outside the home so she can care for her daughter, who uses a wheelchair, has a feeding tube and a seizure disorder.

"There is no end to the diapers, this is a constant thing where she'll always have this expense," Pitchellis said. "It's not easy to come up with an extra $130 a month when you're on a single-family income and just out of the blue find out this benefit has been taken away."

Byron Township resident Rick Van Beek said his family has struggled financially because he was in the construction industry and has been out of work since last spring.

The cuts led to Van Beek recently dropping out of computer college to take a part-time job to cover the unexpected $250-a-month cost for incontinence supplies for his 10-year-old daughter, Madyson, who has severe cerebral palsy.

"We make just enough to not qualify for (Medicaid) so we get no other assistance at all," Van Beek said. "What it boiled down to for us is I've been wanting to go back to school and I couldn't."

Belmont resident Jill Marsiglia, whose 10-year-old son, Jacob, has a genetic disorder that causes tumors to form in his brain, which leads to seizures and other complications, said her family no longer is receiving transportation reimbursement for frequent trips to a specialist in Ohio. That comes on top of increases to the monthly fees they pay for state-funded health services, as well as the loss of respite service, and costly changes in prescription medication coverage.

"I just keep thinking pretty soon they're not going to pay for any of this stuff," Marsiglia said.

United Cerebral Palsy's Serano, a White Lake resident who has a 32-year-old daughter with cerebral palsy, said support that has helped families care for children who often need special vehicles, therapies, supplies, care and surgeries is slowly being eroded.

"I lived through these kinds of issues when families were giving their children up to be eligible for Medicaid," Serano said. "This is a domino effect that could have dire consequences."