The Kansas CW | State May Force MD Patient to Move

State May Force MD Patient to Move

By Brian Heap (WINFIELD, Kan.)  

Adam Swaney sits at a dining table surrounded by drawings of animals and Elvis Presley, mostly Elvis.  The 22 year-old Winfield man fell in love with The King and his music several years ago, after seeing a tribute artist perform live.   

As he sketches Elvis's nose, the sound of his pencil running across the crisp white paper is drowned by the hissing of the breathing machine that keeps him alive.  Adam has a severe form of Muscular Dystrophy.  His condition is terminal.  Caregivers say many people with the disease don't even live to be Adam's age.  The disease has confined Adam to a bed or wheelchair, but it cannot confine his mind.  

"He has been drawing since he was in preschool ... and the pictures mean a lot to him," says Rachel, one of Adam's three round the clock nurses who reads his lips and translates during an interview. 

One could not tell by his upbeat demeanor, but Adam is involved in a challenging fight for both his life and his freedom.  That's because the state may force him to leave the place he calls home and strip him of the joys that keep him alive. 

For nearly two years, he has lived in a duplex home in Winfield with 7 other developmentally disabled patients.  The residential care facility is owned and operated by a non-profit group called Creative Community Living (CCL). 

Adam has bounced around other facilities and hospitals in the past.  He says caregivers at those places didn't bathe him regularly and that he would get bed sores from not being moved around.   And he rarely was given a chance to go outside the walls of the facility.  "I don't want to go back to those places because I'm happy here," he mouths. 

Adam says his current home gives him the best care he's ever received.  He has gained about 30 pounds and gets to go places like the movies or summer camp to interact with friends. 

"He's said to me that he's scared.  He's anxious.  He's angry.  He wants to stay here.  He said to me there's other places that he's been that he hasn't been taken care of as well," says Kerry Hastings.  She is a CCL employee, who serves as Adam's advocate -- his voice in the fight to remain at his home. 

At issue is the generator at Adam's duplex.  During a routine inspection in August, the State Fire Marshal's Office noted "distinctly hazardous conditions related to Fire/Life Safety were discovered at this facility." Specifically, the report stated the emergency generator does not meet the requirements for patients who rely on life support equipment like ventilators.  Officials say in order to meet the safety code, the home would need to upgrade to an industrial size generator, or place fewer people in the home with Adam. 

Deputy State Fire Marshal Karl McNorton tells Eyewitness News his office is "not the bad guy".  McNorton says the office has a responsibility to protect the safety of everyone in the home, in the event of a fire or extended power outage.  The fire marshal's office says it is sympathetic to Adam's needs and desires, but cannot compromise on safety. 

"I wish they could understand what I'm going through," Adam says in a voice that's barely audible. "I love life and I don't want it to end any time soon." 

"I'm very concerned about his well being because I think part of what has kept him going so long and feeling so good is he's connected with the outside world.  He doesn't feel like he has to stay here and give up," says Hastings. 

Newton attorney Tom Adrian is representing Adam.  He says the home generator is more than capable of handling his client's needs and that the current law is outdated.  Adrian believes the technology associated with ventilators and their back-up systems is far more sophisticated than it was when the code was written. 

Both the State Fire Marshal's Office and the Kansas Department of Social and Rehabilitation Services say they are working with CCL and Adam to see if a compromise can be reached that will allow Adam to stay where he's happy and still ensure the safety of everyone at the home. 

If you would like to learn more about Adam Swaney's story, contact his case manager and advocate, Kerry Hastings at (620) 221-1119.