21st birthday means uncertain future for several with medical conditions

21st birthday means uncertain future for several with medical conditions
Published: Oct. 23, 2014 at 9:19 PM EDT|Updated: Dec. 7, 2014 at 10:19 PM EST
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Kevin Ries (Source: WAVE 3 News)
Kevin Ries (Source: WAVE 3 News)
Lauren (Source: WAVE 3 News)
Lauren (Source: WAVE 3 News)
Billie Jo Ries (Source: WAVE 3 News)
Billie Jo Ries (Source: WAVE 3 News)
April Raddish (Source: WAVE 3 News)
April Raddish (Source: WAVE 3 News)
Gordon Brown (Source: WAVE 3 News)
Gordon Brown (Source: WAVE 3 News)

LOUISVILLE, KY (WAVE) - Most people cannot wait to reach their 21st birthday. For a group of young adults though, that milestone marks a dangerous transition.

The medically-fragile children living at the Home of the Innocents have to leave once they turn 21, and too often, aging out of the home they know leaves their futures in doubt.

"She loves watching TV," Kevin Ries said of his 17-year-old daughter, Lauren. "She really loves music."

In that way, Lauren is not different than many 17-year-olds, but for Kevin Ries and his wife, Billie Jo Ries, even that is a small victory.

"When she was born, doctors told us pretty much 'count your blessings that she's alive,'" Kevin Ries explained.

A traumatic birth and cerebral palsy changed Lauren and her family forever. After all the challenges they have faced, the one they are up against now may be one of the biggest.

"We're here and we can take care of her, but we're aging and we just want to have peace of mind to know if something were to happen to us, she would be at a care facility that would take really good care of her for the rest of her life," explained Billie Jo Ries.

Lauren lives full time at the Kosair Charities Pediatric Convalescent Center at Home of the Innocents. "There are dozens of other medically fragile children who live there," said KCPCC Vice President of Clinical Services April Raddish. "Some with birth defects, some that were born premature, 24, 25, 26 weeks gestation, many of them have come from automobile accidents."

All face a stark reality when they grow up. When they turn 21, their families must find another place for them to live and options are limited.

"They're limited to either a senior nursing home, and remember these are 20-somethings," said Home of the Innocents CEO and President Gordon Brown.

Brown says, a staffed residence, also known as a group home, is another option, but he and Raddish agree both of these types of facilities often don't have the level of medical care their patients need.

"We may dispatch them to a staffed residence and within days or months sometimes, they may need a higher level, like a hospitalization," Raddish said.

One out of three children Raddish has been able to track after they left the home has needed medical intervention within two years.

Kevin Ries knows for some, it's been even worse.

"These kids are either having major medical issues within six months or a year or they pass away within the first two years," he said.

The Rieses, Raddish and Brown all agree, the best thing for children like Lauren is an Intermediate Care Facility for people with intellectual disabilities, known as an ICF/MR.

"Most of them have very long waiting lists for their regular clients to come in," Brown said.

Some of those lists are four or five years or longer, and Raddish's tracking has shown some of the young adults won't survive that long.

For families like the Rieses, those are not odds they can take.

"I know our kids are challenged and they need certain needs and certain care," Kevin Ries said, "but if they can up to 21 years old, pretty much everything is fine or they're thriving and not just one, but a number of the kids that age out, that end up passing away or having problems, I think that speaks volumes."

"We are so desperate and so are the other families," said Billie Jo Ries.

Like so many things, this may boil down to money.

Cedar Lake provides the kind of specialized care in the Louisville area that is ideal for people like Lauren. Its president and CEO, Chris Stevenson, says about half of the beds Kentucky needs to care for these adults are not being used by the state, creating the agonizing waits for families like the Rieses.

He says, in part, this is created by a push nationally to move away from institutional settings, led by the U.S. Department of Justice. In 2009, its Civil Rights Division started an aggressive campaign to enforce a Supreme Court decision, known as Olmstead v. L.C., to better integrate people with disabilities into society.

In an effort to do that, Cedar Lake has proposed four-bed community homes, which would move 16 residents over the next four years. However, that would only change the setting, not create more beds to shorten the wait for families like the Rieses.

Everyone interviewed for this story agrees that as medicine saves more children who used to not survive, this problem will only get worse.

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