Hundreds protest cuts to disability services in Kansas

From The Wichita Eagle in Kansas:

You can almost hear the weariness in their voices as Pat and Aldona Carney tell their story.

The youngest of their five children, 15-year-old Neil, has severe autism.

He also has pica, a medical disorder characterized by an appetite for inedible things. He has eaten insulation, charcoal briquettes and parts of mattresses.

Neil has tried to eat light bulbs. When he got a tooth caught while biting the carpet, he yanked the tooth out by its roots.

"He's a 24-7, one-on-one child," Aldona Carney said. "He's up at 3 in the morning a lot of times. Either Pat or I are up a little bit later, because he's tearing things up if we're not.

"We love him, he's ours. We want him in our house, but we also know we need help." (The three are pictured.)

Because of state budget cuts, there is less help for the Carneys, others with disabled family members and Kansas' disabled citizens overall.

Friday, more than 300 people attended a rally at Exploration Place to tell their stories and help make the Legislature aware what losing disability services has meant.

"More than a generation ago the state saw the futility of state institutions," said Marla Flentje, who has a 34-year-old son with Down syndrome. "The state made a promise to help the disabled so they could be at home and work and play in the community."

That promise, she said, has been broken.

A 10 percent state budget cut has sliced $30 million from Medicaid for disability services, said Tom Laing, executive director of InterHab, a statewide resource center to support those with disabilities.

But state grants for the disabled have also been reduced drastically, cutting out funds for those who don't qualify for Medicaid.

Between Medicaid and grants, Sedgwick County alone has lost more than $3.4 million this year to help the disabled.

"When we go to the Legislature, they say, 'Money is tight, you need to be realistic,' " Laing said. "I say, 'Oh, you need to be realistic. These people's lives are vulnerable. There's no margin for the kind of error that budget cuts are creating. Have you met the people you're hurting?' "

For the Carneys, the cuts have meant losing 16 hours of respite care per month through Rainbows United, a Wichita nonprofit that serves children with special needs and their families.

That leaves the Carneys with only 40 hours each month. Not enough, they say, for a family with a child that demands as much care as Neil.

Pat Carney attributes his wife's migraines to the stress of caring for Neil.

Neil attends Levy Special Education Center. But when school isn't in session, someone has to be with him at home.

Aldona Carney used to teach school, then switched to substituting so she could be with Neil more. But she recently had to eliminate that job.

"I literally couldn't get in the shower in the morning," she said, "because I had to watch him. He can be very destructive."

Courtney Carpenter's 6-year-old son, Devin, is a kindergartner at Benton Elementary with a loving smile.

Devin has a rare chromosomal disorder known as Trisomy 22. He's been blind and deaf since birth and has developmental issues.

So far Carpenter hasn't lost any of the respite hours she uses with Rainbows.

"I'm just praying that it doesn't happen," she said. "That's my biggest fear. I don't know what I would do then."

In fiscal year 2009, Sedgwick County received $2.4 million in state grants for the disabled. It will be $382,000 in 2010, said Chad VonAhnen, director of the Sedgwick County Developmental Disability Organization.

That means Marc Lyon, 45, no longer has a job through Starkey Inc., which serves people with developmental disabilities.

"He's just lost now that he's home with me," said Betty Lyon, Marc's 80-year-old mother. "He asks me every day when he can go back to work."

Marc was born with brain damage and had worked at jobs through Starkey — such as cleaning shelves at Dillons — for 20 years. But his grant money was eliminated Jan. 1, and so was his job.

Because he doesn't have overwhelming health or behavioral issues, he's not eligible for Medicaid.

With the grant money gone, so is his safety net.

Betty Lyon called Sen. Les Donovan, R-Wichita, who in turn called Jamie Opat, Starkey's communications director.

"He wanted to see if we could get him back in at Starkey," Opat said. "This is the real face of state budget cuts. I think it was an a-ha moment for him.

"There's no easy fix just to get somebody back in."

Agencies that serve the disabled are trying to be creative, such as increasing the size of group homes. That works against the original purpose of eliminating institutions so people with disabilities would be in smaller settings.

Those at Friday's rally plan to contact their legislators about restoring funds, send them videos with their stories and travel to Topeka to deliver their messages.

"We have to be Neil's voice," Aldona Carney said. "We all have to be the voices for those who can't speak up."