Invisible Kansans create Web presence to tell their stories

From The AP. Pictured is Jayne, 30, who has Rett syndrome and tells her story at http://www.invisiblekansans.org/.

GARDNER, Kan. — They call themselves “Invisible Kansans.”

Developmentally disabled state residents who wait for services they need to live more productive lives are often forgotten during battles over the state budget, advocates and family members say.

This year, with the state facing especially tough budget decisions, the disabled and their supporters launched an aggressive campaign asking the public to help persuade lawmakers to remember the nearly 4,000 Kansans who are waiting for services — sometimes for years.

They include children who need special therapies, mentally disabled older adults who can no longer live in their homes and parents of disabled children who simply need a few hours out of the house.

“We believe that if most Kansans knew what was going on, they would feel the way we feel,” said Matt Fletcher, associate executive director of InterHab, an organization that coordinates 40 groups working for the disabled. “These folks should not have to wait for help, they should be a priority.”

The campaign, dubbed Invisible Kansans, comes as state lawmakers are trying to find a way to close a $199 million budget deficit for the fiscal year ending June 30.

The effort uses traditional avenues such as television ads, billboards and a Web site, but also added the use of Facebook, MySpace and YouTube to publicize the stories of people on the waiting lists. Viewers are asked to contact their legislators.

The campaign’s goals are to reduce the waiting lists and increase the salaries of workers who provide the services. Fletcher said the average salary for direct care workers is $8.33 an hour, leading to turnover rates of 60 percent.

Both of those goals are close to the heart of Jason Blakley, a Gardner man who has a developmentally disabled 5-year-old son, Connor. Blakley also is a direct care worker for Johnson County Developmental Supports in Lenexa, where he works with disabled adults.

Blakley, 33, works a day shift while his wife, Angi Blakley, 29, works evenings as a pediatric nurse, so they can be home with their children: 21-month-old Trinity and Connor, who was born with septo-optic dysplasia, a malformation of his brain that left him unable to speak, with mild retardation, a hormone deficiency and a cleft lip and palate.

He currently is at the development stage of a 1- or 2-year-old and is prone to meltdowns and excitable episodes, Angi Blakley said.

Connor was put on the waiting list when he turned 5 in November, and the family has been told it could be two or three years before they can get services. The Blakleys would like a case manager to help them negotiate the maze of regulations and services available. And Angi Blakley would like someone to watch Connor for a few hours a week so she could run errands or just have some time alone.

“I feel a little bit overloaded sometimes, trying to take care of him and the house. I’m pretty much stuck in the house all week,” she said. “Just getting a break would be a real help.”

Connor receives some help from his school, Sunflower Elementary, but it’s too expensive to pay for other therapies, she said. The Blakleys’ combined income makes them ineligible for most Medicaid or other government services.

Jason Blakley has worked with disabled adults for about nine years in Kansas, putting him at the highest possible pay level for his job classification. He likes his job but acknowledges he came close to burnout and he has seen some turnover.

“It’s always been hard to find money for the disabled or (service workers),” he said. “Of course I’d like to be paid more. Who wouldn’t? I just don’t have any answers for it.”

But his wife says a difficult budget year is the perfect time for state leaders to determine what the government’s priorities should be.

“There’s so much money we put into other things that I don’t think is as important as our future, our kids,” she said. “These kids could make better lives for themselves if they got help early. And here we are waiting, maybe for two years.”

Rep. Jason Watkins, R-Wichita, agrees that one of government’s key responsibilities is to take care of the disabled, who generally have little influence in the political arena.

“We have to go back to the fundamental philosophy of what our government’s priorities should be” he said. “We might have to make a choice to drop an economic development area, or maybe even a wildlife and parks area, before we cut money for the physically or developmentally disabled.”

Although he acknowledges it’s a bad budget year for Kansas, Fletcher, of InterHab, is out of patience with the talk about a lack of money for the disabled.

“Every year is a bad budget year for disability services in Kansas,” he said. “Throughout the good times and the bad times there has not been attention paid to these services by state leaders.

“We would argue the No. 1 priority for government is to take care of the vulnerable. It’s not like a road or building. These are people’s lives that really can’t wait.”