More resources are available to help transition developmentally disabled adults from Washington's four state-run institutions to community settings -- a boost in assistance that started in the months after KING 5 began airing its investigative series, "Last of the Institutions."
The series, which started in November, detailed how people living even with severe disabilities, such as autism and cerebral palsy, can thrive outside of the confines of our state’s institutions for the disabled. The reports highlighted how Washington lags behind much of the country by continuing to operate four institutions, which are: Fircrest in Shoreline, the Rainier School in Buckley, the Yakima Valley School in Selah and Lakeland Village outside of Spokane.
“To see them as sort of a different species who would want to live their life in a way that’s different than the rest of us want to live our lives is unfortunate and frankly discriminatory,” said Charlie Lakin of Minneapolis, one of the country’s most respected researchers in the field.
Two months after the series began, the state Department of Social and Health Services made a policy change to help people move out of institutions. Supported living agencies that assist people with disabilities to live in regular communities received a notice from the state alerting them about a new funding source to help them gear up to take on clients who present with extreme challenges.
“This letter is to inform you about an exciting opportunity to support individuals who currently reside at a Residential Habilitation Center (RHC) (institution) and who desire to move to the community,” wrote Sharon Cloninger, Community Services Unit Manager for DSHS. “(The state) realizes that there are some barriers that may delay or hinder a supported living service provider from meeting the unique support needs of each of these individuals…..(so DSHS) will provide funding for enhanced services.”
“This is more funding for me to better prepare my staff,” said Mary Nestle-Klyn, program director for the nonprofit 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.
“Usually the news is, ‘We’re cutting this, we’re cutting that, do more with less money,' (but now) I’m thrilled, thank you. I think it will really help," Nestle-Klyn said.
KING 5's reports also examined the political and emotional barriers that help keep the institutions running. On the political side, the four institutions provide over 2,000 state jobs – jobs fiercely defended by unions. On the emotional side, many families fight tooth and nail to keep them open, believing they are the only safe place for their disabled loved ones.
In the last six months KING has spoken with many relatives who think their brother, sister, cousin, or child would not be safe or well cared for outside of an institution, known as Residential Habilitation Centers (RHCs) in Washington state.
“Those of us who have severely multi-handicapped sons and daughters have grave concerns with the (idea of) closing our Residential Habilitation Centers,” said Jeanie Barrett whose son is a resident of the Rainier School. “My son is typical of those living in an RHC. He has been a resident there for 53 years. His many medical problems do not allow him to even have the idea of moving to a community home.” (Read letters to KING from Barrett and others.)
But since the series began there’s been a change of heart for some who previously weren’t considering moving their relative out of an RHC. A state-funded program to help families make this transition, the Family Mentor Project, has seen its enrollment skyrocket by 400 percent in the last several months.
“Since your series started my client base has quadrupled,” said Rosemary Krueger, Family Mentor Project coordinator. “Between the last couple of weeks and the end of April, I have nine people moving (out of an institution) and that’s more than I’ve had in the last 18 months,,, . I’m thrilled. I’m very busy. It’s a success story. We’re getting more calls all of the time.”
Starting in 2011 when the legislature funded the Family Mentor Project, Krueger has helped dozens of families move loved ones out of institutions and into community homes. Krueger is uniquely qualified to understand the fears and reservations relatives feel about such a move. Her daughter, Brandi, lived at Fircrest for nine years.
Brandi has been diagnosed with severe epilepsy, intellectual disability and mild autism. Prior to moving into Fircrest Brandi experienced 15-20 grand mal seizures every night in her sleep. She was regularly hospitalized at Harborview, Children’s and Northwest for seizures. The seizure pattern and hospitalizations continued at the RHC, leaving her mother too frightened to consider a move.
“I was afraid that she’d have seizures and they wouldn’t stop (if I moved her),” said Krueger.
Eventually, Krueger decided to tour some agency community placements and took the chance on moving Brandi. She’s never looked back.
“Now she’s lived in the community for the past 20 years successfully. And all of the things I was scared to death about never happened…none of them. And she was medically fragile,” said Krueger.
Instead of 15-20 seizures a night, Brandi now has an average of one or two per month and has not been hospitalized for seizures for over ten years.
“It’s really been a wonderful change for her,” said Krueger. She attributes the improvement to access to better medical care and specialists in the community. “Absolutely, absolutely ... I can’t tell you how grateful I am.”
Instead of spending weeks at a time at the Fircrest infirmary or in hospitals, Brandi, now 48, goes swimming and therapeutic horseback riding once a week. She belongs to a walking club organized by her supported living provider, Alpha Supported Living. And with the help of a job coach, she packages food items into kits for easy to make meals.
“I share (with new families) about how afraid I was and doubtful and the steps I took and that I’d like to offer that (help) to them and support them every step of the way,” said Krueger. “When the loved one is nonverbal it’s an extra scary decision for the parent or guardian because they don’t know for sure what their loved one is thinking. But after the move, they can tell how much happier they are. How free they are. It’s scary but once (the move) is done and you see it all working out, people thank me over and over that I stuck with them.”
Another focus for the Family Mentor project is making every effort to have clients placed close to their families to better foster those relationships.
"Families want the loved one living closer to them. Most agencies will even provide transportation for home visits and attending staff if needed," said Krueger.
The Family Mentor Project has seen such growth that Rosemary Krueger had to increase her hours, and this month the state added funding to bring on a second employee to help with the growing caseload.
“So having all of this information put out there (on TV) has made people a bit more open to talking about it,” said Krueger.
If you'd like more information about the Family Mentor Project you can email Rosemary Krueger at email@example.com or call 360-878-7579.
-- Follow Susannah Frame on Twitter: @SFrameK5.