Lack of funding is keeping about three dozen developmentally disabled adults in forced segregation in one of Washington's four state-run institutions, according to estimates from the Department of Social and Health Services and advocates working to serve this population.

Private agencies that serve the developmentally disabled in community settings blame the legislature, which sets limits on how much the state will reimburse the agencies for caring for disabled adults. Those rates, agencies say, are not enough to provide a living wage to their workers.

Advocates for people with disabilities predict that if lawmakers fail to increase rates paid to service providers, group homes and supported living homes will shutter, waiting lists will increase and caregiver turnover and quality will suffer.

“Our staff are making a wage that is just now catching up to where we were six years ago” said Scott Livengood, CEO of Alpha Supported Living. “We don’t have the money available to pay staff and recruit to get them in the door.”

The result is up to a three-year waiting list for some developmentally disabled adults currently living at the state's institutions who want to be able to enjoy the benefits and freedoms that come from living in their own home. Most on the waiting list would like to live in what is called supported living settings, where staff comes in shifts around the clock to meet the client’s needs.

“Ultimately this is a basic human rights issue,” said David Carlson, lead attorney at Disability Rights Washington (DRW). DRW is a federally funded nonprofit that works to advance the dignity, equality, and self-determination of people with disabilities.

Lagging behind

The U.S. Supreme court ruled in 1999 that unnecessary segregation of people with disabilities is a form of unlawful discrimination. Since 2009, the Department of Justice has executed more than 40 legal actions in 25 states to ensure states integrate this population into community settings.

“If you live in an institution and you want to leave, being segregated unnecessarily violates your rights," Carlson said. "You should not have your choice of where you live limited to four institutions in this state. You should have the same choice as I do. If I want to live in a different part of Bremerton, for example, I can move to a different part of Bremerton."

In a series of stories that began airing last November, the KING 5 Investigators showed that Washington is out of step with many other states by continuing to institutionalize many developmentally disabled adults. The Last of the Institutions series showcased academic studies going back 40 years that overwhelmingly point to improved outcomes for people when they move out of institutions and into the community. Studies show that even people with the most severe needs are able to successfully live in the community with appropriate supports around them -- often at a savings to the taxpayers.

Approximately 800 people still reside in Washington's four facilities -- Fircrest in Shoreline, the Rainier School in Buckley, Lakeland Village in Spokane, and the Yakima Valley School in Selah.

Meanwhile, Alaska, Oregon, Hawaii, Montana, New Mexico, Indiana, Maine, Michigan, Minnesota, New Hampshire, Oklahoma, Alabama, Vermont, West Virginia, Rhode Island and Washington, D.C., have already closed all of their institutions. Idaho, Nevada, Wyoming, Georgia, North Dakota, Delaware, Arizona and California are actively working or have definitive plans to do the same.

“What we would hope is that Washington would be more proactive than that and not wait for a lawsuit to force them to move people who are stuck, but figure out, 'How do we get people to the right place,’” said Carlson. “It’s not acceptable from a legal perspective, but it’s also not acceptable from a human perspective."

Washington also hovers near the bottom in its commitment to financing community services for the disabled. According to researchers at the Coleman Institute for Cognitive Disabilities at the University of Colorado, Washington ranks 39th in the nation in spending for community services. States including Mississippi, Alabama and Texas scored lower. New York, Maine and West Virginia scored the highest.

“Washington state is not different from the rest of the states in the country that have gone through this. We can figure out how to get through those economic barriers but we need somebody in a leadership role who’s going to help us focus on what the priority should be,” said Mike Hetzenbeler, CEO of Provail, a nonprofit that supports people with cerebral palsy in the community.

The legislature set the starting wage for care providers in the community at $10.26 per hour. The employees paid at that rate are not unionized. In contrast, care providers working in the state-run institutions are represented by unions, and their starting wage is approximately 30 percent more at $13.09 per house. The disparity makes it difficult to recruit and retain staff working with similar clients, with similar needs in community settings.

“I’m definitely considering a better job with better benefits, (I have) no health insurance,” said Josh Savidge, who has provided direct care support for clients with Soundview Association in Stanwood for six years.

One of Savidge's clients is Janell Rollins; an accidental shooting when she was a child left Janell a quadriplegic and with developmental disabilities.

“It’s hard for me. Being here six years, (do I) break Janell’s heart by leaving? Or stick it out for her and hurt financially at home?” said Savidge.

Without the use of her arms or legs, Janell depends on her caregivers for all of her basic needs. She said she worries about losing them, especially Josh, due to the low pay.

“I love my staff and I love what they do because they help me in the community and at home. I don’t want to see them go for any kind of reason,” said Rollins. “If we didn’t have him (Josh) ... I would just be lost.”

The supported living provider community predicts the situation will worsen as the minimum wage goes up in Seattle and Tacoma. The legislature has not provided for caregiver wages to increase annually to keep pace with the minimum wage hikes. By 2017 the minimum wage in Seattle will increase to $15 per hour, while the reimbursement rate set by the legislature through the biennial appropriations bill will be $11.32 per hour, leaving the agencies, many of them nonprofits, to figure out how to make up the difference.

“This will have a huge financial impact on these providers. They may choose to move to other areas of the state for services or if unable to pay the mandated minimum wage, will face fines,” said Livengood.

There are approximately 140 supported living providers across the state, with about 35 of them in the Seattle/King County region.

“I worry that smaller supported living agencies, many established by groups of families putting their own money together and forming small ... agencies/nonprofits in the 1980s, will be unprepared to comply with the escalating minimum wage,” said Stacy Gillett, executive director of the ARC of King County, a nonprofit that advocates for the civil rights of people with developmental disabilities.

Being segregated in a state institution is the last thing Janell Rollins wants. She loves her life in Stanwood, where she makes decisions for herself and sets her own schedule. She helps with her own shopping at local stores and regularly attends concerts. With a job coach, she’s a receptionist at a nonprofit and calls Bingo at a community center. Janell knows what she wants – to live as independently as possible. She wants to make sure the resources are around to keep it that way.

“So we don’t have to go to an institution or a nursing home. But (I want to stay) right here where I want to be, in my own house,” said Rollins.

“Their (our client’s) lives are just as important as mine, and the quality of life is just as important as mine, or yours, or the lawmakers,” said Savidge.