300 Protest Disability Service Budget Cuts in Kansas

BY RICK PLUMLEE
The Wichita Eagle
http://www.kansas.com/news/story/1179318.html#ixzz0fQtNTBQM
Jeff Tuttle/The Wichita EagleAldona and Pat Carney, of Wichita, with their son, Neil, on Friday (Feb. 12, 2010).

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 Brian, 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.

Brian 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."

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 Brian.

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

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

Read more: http://www.kansas.com/news/story/1179318.html#ixzz0fWix9oYk

Nevada, Pennsylvania, Virginia Updates

Passed on by Bob Williams:

February 10, 2010 – That’s The Way It Is: (Feel free to repost in full or in part)

PUBLIC OBSCENITY IN NEVADA: Former U.S. Supreme Court Chief Justice Warren Burger said that people know obscenity when they see it. The same is true of obscene public policy. Arguing that the state could no longer afford to pay for "bloated government services", Nevada Governor Jim Gibbons has proposed to cut 109 million in state Medicaid funding. According to news reports, such cuts would results in the “ration(ing of) adult diapers, eliminate denture and hearing-aid programs, and force personal care assistants to buy their own disposable gloves” as well as reduce services for persons with traumatic brain injury. "Cutting them off of dentures, hearing-aid services and diapers, “Assembly Speaker Barbara Buckley, D-Las Vegas, commented, “I don't know how we look the elderly in the eye." Not only would these cut degrade the civil rights and essential humanity of Nevadans with disabilities, their families and personal assistants but also expose them to potential health risks as well. See: http://journalstar.com/news/national/article_5743704b-b9ec-5b22-9b5a-88f00b0cca8f.html.

A FRIEND IN PENNSYLVANIA: When most other States are slashing Medicaid funding for community living, Pennsylvania Governor Ed Rendell says he wants to invest in making “major progress rebalancing and restructuring the long-term living system to ensure that older Pennsylvanians can age in place at home with dignity and a high quality of care.” The Governor’s 2010-11 budget includes a $17.3 million increase for direct services. “Over the last eight years, funding for aging and long-term living services has grown by $1 billion, a 307-percent increase. “ According to a release from his office, “Nursing homes will be eligible for $24 million more to support the increased needs of a more complex nursing home population. In addition, nearly 1,700 additional older adults and 1,525 additional persons with disabilities will be able to receive home- and community-based services so that they can live more independently. Finally, 4,000 additional older Pennsylvanians will be able to get their prescription drugs through the PACE and PACENET programs.The gains for older Pennsylvanians and persons with disabilities would not have been sustainable without major initiatives to rebalance the long-term living system. The share of consumers served in their home has doubled since 2003. Because home-based services are more cost-effective, scarce public resources can be stretched further.”” See: http://www.prnewswire.com/news-releases/governor-rendell--2010-11-budget-preserves-health-care-for-seniors-persons-with-disabilities-and-pennsylvanias-poorest-families-83890992.html.

LIFE DEFERRED: When Sam May graduates from a Fairfax Virginia high school next year, he should be able to look forward to his life – finding a job, attending community development, making plans to move into their own home someday. Instead, May, who has significant disabilities due to Fragile X syndrome, will have his life and future put on indefinite hold by being placed on a waiting list along with over 600 others with intellectual and developmental disabilities. At least half of these persons have been deemed by the county to have an “urgent need” for such Medicaid waiver services as personal assistance, supported employment and other supports to remain in their homes and communities. In 2007, Virginia agreed to put more resources into increasing accessing to these services and supports and to fall the waiting list. However, impending budget cuts threatens to make an already precarious and dire situation even worse. See: http://www.fairfaxtimes.com/cms/story.php?id=1049.

Illinois Introduces Managed Care Pilot to Save $$$

Could it be happening in your state?

See http://www.chicagotribune.com/news/chi-ap-il-medicaidillinois,0,7621952.story.

CHICAGO - The state of Illinois is planning a pilot project to enroll Medicaid recipients in six counties in managed care, an effort being criticized by advocates for the developmentally disabled.

Illinois' Medicaid agency announced Monday it's seeking proposals from managed care organizations to run the program. It would affect 40,000 adults with disabilities and older adults in DuPage, Kane, Kankakee, Lake, Will and suburban Cook counties.

The state expects the program to save taxpayers nearly $200 million in its first five years.

Advocates for the developmentally disabled are concerned the effort to save money may lead to rationing of health care. Tony Paulauski is executive director of the Arc of Illinois, a group advocating for the developmentally disabled. He says managed care organizations have little experience with developmental disabilities.