Man with muscular dystrophy fights to keep 24/7 care - KCTV5 News

Prairie Village man with muscular dystrophy fights to keep 24/7 care

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A Prairie Village father is taking his fight for medical care to the top. He says it's a matter of life and death because KanCare cuts will take away his lifesaving assistance.

Finn Bullers started an online petition that asks Kansas Gov. Sam Brownback to restore proposed drastic cuts to his home-based services. Right now he has a caretaker help him 24 hours a day, seven days a week, but he said the state wants to cut that care by 76 percent.

Bullers is a father who fears he won't see his kids grow old.

"I want to be here for my two children. I want to see them go on their first date and graduate high school and be the father my dad was to me. That is so important in my life," he said.

Bullers has a rare form of muscular dystrophy that is described as a muscle-wasting condition.

"Your first thing to go is your fine motor skills," he said.

Without those skills, he said he must be moved from his bed to his chair. He needs help eating and going to the restroom.

"It doesn't get better. It only gets worse. That is a reality that I live with," he said.

Rather than receiving help from the state to pay for 24/7 care inside his home, Bullers said KanCare cuts reduced that to 40 hours a week.

"I don't want to be dramatic about it but, if I don't have that level of care, I die. If this tube comes out, and I can't breathe for a minute and half to two minutes, I die. It's as simple as that," he said.

Bullers filed an appeal with the Kansas Office of Administrative Hearings to protest the reduction in care. He said his hearing date has been postponed twice.

"I want to be here for those kids. Governor Sam Brownback is making that impossible. I don't think that's right," he said.

He started an online petition asking others to contact the governor to reinstate his level of care.

"Many people in my situation are the state's most vulnerable. There are thousands of them. They can't write a letter to their senator or get in front of the television cameras and say, 'hey this isn't right.' So I come to you and your viewers in a desperate effort to say ‘hey we need help,'" Bullers said.

Bullers' petition has received several hundred online supporters. He wants the governor to take another look at the pilot KanCare program.

Brownback's office estimated that KanCare would result in $1 billion in savings over five years by better managing chronic conditions and patient care.

"If they are going to pull the plug on me, I'm going to go down fighting," Bullers said.

KCTV5 contacted Brownback's office for comment about the petition. They forwarded the call to Angela De Rocha, the communications director for the Kansas Department for Aging and Disability Services that oversees the physical disability waiver program.

De Rocha says Bullers' level of in-home care was decided and reviewed by four different people. She said they use a very detailed assessment process that is not an arbitrary decision.

De Rocha said there are 2,800 people on a waiting list for the physical disability waiver program.

According to De Rocha, if someone is receiving more services than what they need to live at home, someone else will be without services and on the waiting list.

She also said she has asked Bullers to sign a release form that would allow her to discuss the details of his case with the media. De Rocha said, because he has not signed the release, she cannot discuss specifics, including his concerns about his ventilator malfunctioning while he is without 24/7 in home care.

Bullers' service will not be impacted until a decision is made during the appeals process.

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