Medically fragile young adults have few options for specialized - WDRB 41 Louisville News

Medically fragile young adults have few options for specialized care

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LOUISVILLE, Ky. (WDRB) -- It is a nationwide problem affecting special needs children that parents in Kentucky are trying to tackle. Medically fragile children living in pediatric care facilities have few options for care when they turn 21. 

By law, they can no longer live in a pediatric care facility. Moving into other care, like a nursing home, can be detrimental.

Cody Bagley did not want to show his sweet side as WDRB came for a visit. He had just gotten back from a field trip to the fairgrounds where he got to interact with animals. Bagley cannot communicate, but he was unhappy about something and we could tell by his constant groaning. 

His mom, Colleen Bagley, knew exactly what he needed. He does not like a lot of clothing, so she took his winter coat off and brought him his security blanket. 

He was soothed instantly and reached for his mom's hands. Once again, she knew what to do. He wanted her to clap. 

"He wants you to clap your hands all day long," said Colleen Bagley. 

Even the nurses will clap their hands when he passes them in his wheelchair. It is just one of many of his peculiar traits. "He's kind of a quirky little guy," his mom laughed, "he's brought a lot of love to our family."

Cody was born with a rare developmental disorder, Smith-Lemli-Opitz, or S-L-O. The doctors said he would never leave the hospital alive.

At age 19, Cody functions with the skill level of an infant. 

"We've learned to communicate with him and he's learned to communicate with us through noises and smiles and screams sometimes." He cannot verbally communicate, and when he is sick, he often injures himself trying to get a message through. As Cody grew older, he became stronger. 

"We were in denial. No mother wants to admit -- or father -- that they can't take care of their own children," said Bagley.

Two years ago, Colleen and her husband Ernie had a big wake up call. "He threw his head into our drywall one day, and put his head into the fireplace -- the brick -- and got a concussion," Colleen explained.

They knew it was time to move him to the Home of the Innocents. "Coming here was gut wrenching," Colleen said as she choked back tears. 

Cody is now flourishing at the Home of the Innocents with specialized care. But at 19-years-old, his time at the Home of the Innocents is running out because of a law. 

"Once they turn that magical age of 21, they can no longer stay here or any other pediatric facility," Bagley explained.

"The young adults are often placed in nursing homes. The people that accept them aren't bad people, they're trying their best," said Gordon Brown, CEO of The Home of the Innocents, "they just don't have the financial resources to do the job properly. And without the financial resources they don't have the skilled personnel that are needed to adequately care for medically fragile young adults."

What is happening when the young adults move out is frightening. 

"For the ones who have transitioned out, the story has not always been a happy ending," said Brown, "a number of them have passed away within two years or so of leaving us."

Brown says in his 20 years as CEO, this law has always posed a problem. But The Home of the Innocents always works with parents to best transition their medically fragile children. 

"It's just a very daunting task to find an appropriate setting for a medically fragile young adult at the at the level of care that we see. Our level of care is very high, they have a high need," Brown explained.

A group of parents and some staff from the Home will meet with state lawmakers Friday, discussing different options like funding for facilities aimed at helping young adults like Cody. 

"We've fought so hard for these kids, all these parents, to keep them alive, and now they're alive and thriving and the thought of them leaving here is almost like a death sentence," said Bagley.

"Unless you walk in their shoes, you really cannot understand the level of fear and trepidation that they have over the future of their child," said Brown.

The parents say they realize they have a long road ahead and part of the battle will be getting funding, but the discussion about finding a solution has to come first.

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