Kansas Health Institute | Information For Policy Makers. Health for Kansans.

TOPEKA — Daniel Perez is a single parent. His 18-year-old son, Danny, is severely autistic.

When left alone, Danny will spend hours crinkling cellophane.

“It’s what he likes to do,” his father said.

A self-employed carpenter, Daniel Perez said he had been rearing his son with the help of a Medicaid-funded respite care worker.

“The help I get, it’s a blessing,” he said.

But recent cuts in Medicaid spending resulted in the care worker being laid off.

“I need help,” Daniel Perez said. “All this is new to me. I can’t find supportive services for him. It’s tough for me to work (without someone to watch his son after school). It really is.”

Daniel, who lives in Wichita, shared his story Friday during a Big Tent Coalition press conference at the Statehouse.

“Were here to deliver the message that the cuts that are happening right now are real, they are devastating people’s lives and without restoring those cuts and putting in proper services and supports, it’s only going to get worse,” said Rocky Nichols, a coalition spokesman and executive director at the Disability Rights Center of Kansas.

The coalition represents about 50 organizations that serve or advocate on behalf of the frail elderly and people with disabilities.

Revenue shortfalls caused Gov. Mark Parkinson to enact a 10 cent cut in state Medicaid payments, which became effective Jan. 1.

Though the cut is expected to save the state $77 million if left in place for fiscal year 2011, it also will mean the loss of an additional $140 million in federal matching funds for service providers.

Nichols said many legislators still are unaware of how the cuts have touched people’s lives.

“It’s almost like policymakers are living in an alternate reality,” he said. “What you’re hearing here today is real.”

Cathy Payne’s 36-year-old daughter, Robin, is deaf, blind, and cannot speak. She has cerebral palsy, epilepsy and scoliosis.

Payne said her daughter understands three words: no, sleep and toilet.

Payne relies on a Medicaid-funded caregiver who has helped her family for the past 10 years.

After the cuts, the caregiver took a $150-a-month cut in pay from the agency that employs her. Payne is now making up the difference for the caregiver.

Other supports also have been lost, she said.

“It all adds to about a $400-a-month reduction,” said Payne, who lives in Berryton. “I’m taking over $250 out of my monthly budget, I have stopped contributions to my 401 (k), I shop only for essentials, and I no longer try to save for household or automotive repairs.”

Payne said she’s always kept Robin on her health insurance policy through her employer.

“I’ve always felt that as a parent, it was my responsibility to pay for her health care – not the state’s,” she said.

Now, she’s not so sure. She said her daughter’s insurance costs more than $200 a month. That’s money she could use to pay bills or give Robin’s caregiver a raise.

“Quite frankly,” she said, “when my renewal comes up in November, I will be seriously reviewing my decision.”

Because Robin is disabled and unable to work, she will be eligible for Medicaid.

Terry Walter, 59, is diabetic. He said he’s had five heart attacks and can’t stand for more than 10 minutes. His left leg is blue below the knee and may have to be amputated.

His Medicaid-funded caregiver, Ralph Glass, is paid $8 an hour. No health insurance, no 401 (k), no mileage expenses reimbursed.

Before the cuts, Glass worked eight-hour days; now, he is paid for four.

“Four hours? We spend that much time in the doctor’s office waiting,” Glass said. “I don’t know what I’m supposed to do. I can’t walk away from him but at the same time I can’t get paid.”

Walter said that without Glass’ care, he likely will have to move to a nursing home.

“That’s my biggest fear,” he said. “I spent five years in a nursing home in Alma and I never want to go through that again. I cherish my freedom.”

Walter, who now lives in Topeka, said people with physical disabilities were tired of being “seen as politically weak.”

But when asked if he had contacted his state representative or senator, he said he had not.

“I haven’t yet,” he said, “but this is my first attempt to cry out.”

Nichols said it would be irresponsible for legislators to continue cutting social service budgets.

Asked if that meant the coalition supported raising taxes, Nichols sidestepped the question, noting that, first, legislators would have to “come to grips with what’s really happening. Until they do, they’re never going to come up with a solution.”

That solution, he said, may include a tax increase.

Nichols is a former state representative from Topeka.