Brad Jones has been living on his own for about eight years now and he has never been happier.
“I had a nice place down the street, but this place has a great view,” he says, looking out the large double window of his East Hill apartment.
Well, maybe “says” is not the right word.
Brad, 47, is a developmentally disabled adult with multiple anomalies, which, according to his mother, Helen, include mild autism, a muscular disorder and a minor palsy, though she admits no one really knows.
The effect is that Brad is non-verbal and for most of his life, was unable to communicate. It was difficult for Brad and his family, and Brad was placed into a group home, which is fairly standard for people with conditions like his.
But life in the group home was chaotic and certainly not right for Brad, who acted out by banging his head against things or in other, more serious ways.
According to Helen, Brad one time sat down in the middle of Aurora Avenue in Seattle to express his discontent with staff and the constant noise and action surrounding him.
In the early 1990s, Brad began to communicate through a process known as facilitated communication, or FC. Brad works with facilitator Don Shouse and points to each letter or whatever words and sentences he wishes to say, using a small, paper keyboard attached to a small notebook.
Shouse then verbalizes Brad’s thoughts for him, like an interpreter would do for a non-English speaker.
But it wasn’t until Brad started talking through Shouse that his family and friends began to realize how unhappy he was in the group homes; “miserable” is the word he uses. Speaking through Shouse, Brad recalled his anger from the days at the group home.
“I get really frustrated. It’s hard to be mellow with all that going on,” Brad recalls, of the turmoil of the home. “If I get impatient I use my body to express frustration.”
It was then that things started to change. Shouse was listening to what Brad had to say and realized that more than anything else, Brad wanted control of his own life.
“I’ve known Don since 1994 and he convinced us that my life could be happier if I had control,” Brad says through Shouse. “Mom agreed and we started planning.”
In 1999, Brad got involved with Total Living Concept, or TLC, a service provider based in Kent that seeks to place individuals with disabilities into their own homes.The agency did what no one else had done.
They asked Brad what he wanted.
Today, he lives with a roommate in his own apartment on East Hill and is finally at peace.
“I was able to tell them what I wanted and they responded. This is the first time I don’t live in a group,” Brad says. “It’s perfect for me. I have trust and control and I have peaceful times here.”
IN THE DRIVER’S SEAT
“Brad knew what he wanted and it became clearer and clearer,” says TLC Executive Director Lyle Romer.
Romer and his wife, Mary, TLC’s supported-living director, share leadership and a vision for their agency. It’s a simple vision, based on their experiences working most of their adult lives with the developmentally disabled and the secret is in its simplicity, laid out in plain language on a poster just inside TLC’s main entrance: “Do not speak for me; Listen to me.”
“I just want to give everybody that comes to us the same shot that I have in establishing a home of my own,” Lyle says. “And it’s not home unless you control the key to the front door.”
Raised to believe that “everyone counts, everyone matters,” Lyle says when he and Mary took over at TLC they just started asking the people whom they support about what they wanted.
“Stunningly, no one said ‘I want to live in a group home,’” Lyle says dryly.
Having worked in institutions and group homes before, the Romers claim the living situations were not fair to the people they supported.
Lyle says much of his work dealt with “models” of ways to deal with and support clients, but he found those were too rigid and that people too unique to be forced into any specific model.
“We didn’t want to do a model,” he said.
Lyle said that for some, group living can lead to “helplessness and depression and powerlessness” that can result in patients either lashing out or simply shutting down.
“You have to be treated and accorded the respect of a human being,” he says.
According to Helen, that was all it took for Brad to begin opening up.
“No one gave him credit for having a brain,” she says. “All he needed was someone who believed in him.”
Within a few years, Brad was moving into his own place. It took many meetings and coordination between Brad, TLC and the family, but today, Brad lives with a roommate on his own and coordinates a support staff of six, who help him do the things he cannot. But make no mistake, Brad makes the decisions.
“I had to decide where to live and what to pay my staff and I had to set schedules and run things,” Brad says. “It was a big change. I wasn’t used to being asked these questions. I was nervous and overwhelmed.”
But it was the questions that helped TLC find the living situation Brad wanted.
“It’s our desire that when you go to Brad’s home, you find out who Brad is,” adds Mary.
Within a few years, Brad had moved into his own apartment. Since then, Brad says he is calm and his anxiety issues have waned. He no longer lashes out and is very happy with his life.
“He really was transformed,” says Helen. “We couldn’t have done and supported or created anything for Brad unless he directed us.”
GROWING SERVICE
Today, TLC serves 28 people in South King County. The agency employs 112 people who work throughout the region. The agency is a non-profit and gets the majority of its funding through the state, but supplements it with other fundraising and grants.
Most of the people they serve pay for their living situations through Section 8 grants, for which they are eligible because many are unemployed or underemployed. Some, like Brad, need supervision at night (because he is non-verbal, Brad could not call for help if needed) and the Section 8 voucher pays for an additional room for a roommate, a “sweet” woman of Brad’s choosing who checks on him in the evenings, but is basically just like any other roommate.
Some of the people in their agency require more support than others, but all of their providers and staff visit the person in their home.
Helen now serves on the agency’s board of directors and says the changes in Brad have been all positive, including his health, his attitude, his behavior. She adds Brad is even more involved socially.
“He has his own life. I didn’t ever dream it would be as good as it is,” Helen says, adding of TLC “They trust the person inside the mask of whatever the public sees.”
But Brad has found more than that. Along with peace and a place of his own, Brad has found a new career, one unimaginable just 15 years ago.
“I’ve become a public speaker,” he says, a smile etching across his face. “I enjoy teaching others it’s possible to have control and to be happy. I was never considered a happy guy before.
“I’m very passionate about teaching and telling my story,” he says, adding that he has a powerpoint presentation and then answers audience questions.
These days Brad speaks around the country, encouraging others to take control and showing that if he can do it, anyone can.
“This is the best way to live and has saved my life,” he says. “It’s critical to being happy. I’m convinced it’s the only way.”
For more information visit totallivingconcept.org or call 253-854-0604.
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