Shawn's story: From life in an institution to a home of his own
Shawn Fanning presented a difficult case to his family and caregivers who wanted to move him out of a state institution and into a home in the community.
Fanning, 27, was born with Angelman syndrome, a rare neuro-genetic disorder characterized by developmental delay, the inability to speak, seizures, walking and balance disorders, and in some, like Shawn, aggressive behaviors.
He wound up in one of Washington's four institutions for the developmentally disabled two years ago after the supported living home where he lived in Oak Harbor was no longer an option for him.
He was supposed to just spend a month at Fircrest in Shoreline while the state found a suitable placement for him in the community. But with Shawn's challenging behaviors and the lack of enough resources in the community, he ended up there for more than two years.
In our continuing series, "Last of the Institutions," KING 5 has looked at how Washington lags behind other states that have taken strong steps to stop institutionalizing people with developmental and intellectual disabilities. The series documented how community placement has been shown to improve quality of life for the formerly institutionalized. But it also showed that opposition to closing facilities like Fircrest can be driven by fears -- a belief that some patients have such high needs that they could never be successfully supported in a community setting.
Shawn Fanning's story shows how even developmentally disabled individuals with the highest level of needs can successfully live outside the walls of a state-run institution. For nearly six months the KING 5 Investigators followed Shawn's journey as he transitioned from living at Fircrest to a home of his own.
Shawn's mother, Julie Taylor of Oak Harbor, wanted her son to experience all the freedoms and opportunities other men in their 20s do – simple things that most people take for granted.
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"I want him to have the same thing that everybody else has. I want him to make his own schedule, get up when he wants, go to bed when he wants, watch what he wants, eat what he chooses to eat," said Julie Taylor. "(I'd like him to) do what every other 27-year-old (does at times) like: ‘I'm staying in my underwear today.'"
Shawn didn't have the level of freedom at Fircrest, a Residential Habilitation Center (RHC) that is home to approximately 215 people with developmental disabilities such as autism, cerebral palsy and Down syndrome. Fircrest runs on a big facility schedule -- there's a time to eat, a time to work, a time to get up in the morning and a time to go bed. In an RHC you have little in the way of privacy, choice, or interaction with the diverse community that's representative of society at large.
"Why would you only want to hang out with people who are exactly the same as you? Don't we all enjoy variety and going out and exploring?" said Mary Nestle-Klyn, program director for the non-profit agency Cascade Connections, based in Whatcom County.
Cascade Connections supports people with disabilities in the community by providing 24/7 staff who attend to their client's needs, in homes that the clients themselves rent.
"It's just not normal or natural and it's not the expectation that you or I would have for our lives, so why would it be the expectation that we would have for a person with a developmental disability?" said Nestle-Klyn.
Landing at Fircrest
Shawn wound up living at a state institution after years of living at home and in a community setting. While still a child, his aggressive behaviors were manageable, but not after they increased and began causing more pain and damage as he grew older and bigger. Over the years, Shawn has broken his sister's nose five times, he's injured his dad, head-butted his mom into the bathtub and thrown her across the living room. By his teenage years Shawn was too big and strong to safely live at home with his siblings.
"That's the scariest part because Shawn's very strong. He's very powerful. He's not trying to hurt you, he's trying to get you to listen to him, but it can be pretty painful (when he injures you)," said Taylor.
At the age of 15, Shawn moved into a youth group home, then to a supported living home for adults, which was a positive experience. "Amazing, phenomenal people, I never had to worry," said Taylor.
But when that home closed, Shawn was forced to move. The caregivers at the new home gave Shawn the wrong medications and mistreated him physically. He regularly came home for weekend visits with scratch marks and bruises in places his mother said Shawn wouldn't have been able to reach.
Through tears, Shawn's mother described some of the events. "He would have claw marks up his arm or on his (back). They would say, ‘He did it,' and he couldn't say, ‘No I didn't.'"
Without a new place to move in short order, Shawn ended up at Fircrest in 2013.
The family said they were grateful for Fircrest and some of the staff who were outstanding advocates for Shawn, but they wanted more for their son. And the difficult behaviors weren't improving at the RHC. The KING 5 cameras were rolling at a distance at Fircrest when Shawn clashed with two staff members in October. We saw him throw himself on the ground, attempt to head-butt one of the employees twice and then hit himself in the head.
A behavior chart from Fircrest showed Shawn exhibiting assaultive behaviors about 15 times a month and self-injurious behavior roughly five times a month. All of this information is recorded and sent to prospective supported living providers in the community in what is called a referral packet.
"Shawn's was scary. It had things in it that I wasn't really inclined to come and visit him at first," said Mary Nestle-Klyn of Cascade Connections. "He broke glass, he hit people, he was biting."
But Nestle-Klyn decided to give Shawn a chance.
"After I met him (at Fircrest) I knew it was the right thing to do. I knew I could not leave him here and we had to find a way to make it work," said Nestle-Klyn. "(But) Shawn Fanning will be our most challenging client that we have transitioned into the community (in 15 years)."
And so began the long transition process. Over the course of many months, staff at Fircrest drove Shawn to a home in Lynden, near Bellingham, that was being adapted for Shawn's needs. The first few trips Shawn refused to get out of the car, but staff from Cascade Connections continued to visit Shawn at Fircrest. The goal was to slowly get to know Shawn and slowly have him get comfortable with Cascade Connections caregivers. Fircrest employees were also training the new staff on ways to work with Shawn.
KING 5 was at Fircrest in October when Nestle-Klyn came for a visit lunchtime visit. Shawn lit up with a huge smile and began clapping when he spotted her.
"We've put a lot of time into making this transition work and Shawn's been loving it. He's been responding really, really well," said Nestle-Klyn. "Nobody belongs in a state institution. Everybody deserves to have the opportunity to have a community and to have a home, to build friendships and relationships and to have a real life."
After nearly a year of visiting and getting a plan in place, moving day came on November 17. When the Cascade Connections staff arrived and began packing Shawn's belongings, their new client grabbed their hands and nearly ran to the van. He climbed in and motioned repeatedly for someone to buckle his seat belt. He waved goodbye to Fircrest, clapped over and over and tried to close the van door while last minute paperwork was being worked out.
"Shawn was really excited, even just getting in to the car. I think he knew that he was coming to Lynden permanently. I really got that distinct impression from him," said Nestle-Klyn. "Shawn understands way more than people give him credit for. Just because he can't talk doesn't mean he doesn't know 100 percent what's going on."
After a two-hour van ride, Shawn bursts through his front door. It's his home, where he can do what he wants, when he wants.
"You could tell, you see in his eyes, the joy," said Nestle-Klyn.
Shawn's life today
Ten weeks later KING 5 traveled again to Lynden to check in. During the visit, Shawn picked out his own lunch by pointing to photos of different food choices. He also went to a gym where he has his own membership to swim.
Swimming is Shawn's favorite activity, yet at Fircrest he never saw a pool. Cascade Connections takes him to his community pool six days a week. He's also attending church, visiting his neighbors, and learning to communicate "yes" and "no" on an adapted Apple iPad. Soon the process of finding employment with the help of a job coach will begin.
"Shawn is doing what Shawn chooses to do like the rest of us in society all day, every day. And it's meaningful. He has a very meaningful life," said Nestle-Klyn.
There have been bumps in the road, especially at the beginning, with Shawn exhibiting aggressive behavior.
"He pulled staff's hair out, he broke staff's glasses, he broke his own television, there were some fairly extreme behaviors," said Nestle-Klyn.
But that pattern was short lived. Shawn's Cascade Connections behavior tracking chart shows a drastic decrease in assaultive behaviors. This is not what the staff expected.
"We were geared up to have (assaults) happening all of the time because that's what was happening in the institution ... And it's just not what we've seen. (Instead) we've see Shawn growing more confident and really understanding that he truly lives a self-directed life," said Nestle-Klyn.
"He went from this tiny bud to this humongous dinner plate rose. It's just amazing. It's beautiful. Absolutely beautiful," said Julie Taylor.
Shawn still visits his family on the weekends, but those trips have a very different feel now. In the past he never wanted to leave the family home. But now, he's grabbing his coat and motioning toward the car about half-way through the visits.
"He comes home for the weekend and I can't keep him past Saturday afternoon. He's done. He wants to go home. ... It's what you want for any child and now Shawn has it too," said Taylor.
On the most recent weekend visit Shawn's mom took a picture of him with a huge smile and a twinkle in his eye. The happiest she had ever seen her son.
"This is my favorite picture in 27 years because you can see the glow and so happy he is. It's just amazing. Because he has freedom. He has what every other person on the earth wants. Shawn is no longer a prisoner in a chaotic world. He's a human being in his own home. And that's what you get is that beautiful face when you're happy," said Taylor.
Shawn's move to the community has been a success so far, with new skills learned, fewer aggressive behaviors and a happier demeanor. But it's a success financially as well.
According to the Department of Social and Health Services, it costs roughly $345,000 a year to care for a person like Shawn at Fircrest. That's the cost for a client who needs constant one-on-one supervision. The state contracts with agencies, like Cascade Connections, to provide supported living in the community for clients like Shawn. The agency reports it will cost less than half of the RHC cost to care for Shawn in his home, at approximately $150,000 a year.
"I would say this is my most challenging transition by far, but the most rewarding," said Nestle-Klyn. "He loves his life, and we're happy supporting him."
-- Follow Susannah Frame on Twitter:@SFrameK5.
This story originally aired on February 24, 2016.