Parents, elected officials seek ways to save residential care facility
Several times a month, Tom Dean drives south from Bellevue toward the northwestern face of Mt. Rainier, until he reaches the small town of Buckley, with a population just shy of 4,500. He travels there to see his son, Patrick, who lives at the Rainier School, a residential care facility for 370 people with developmental disabilities. Patrick, who’s 48, has lived at Rainier School since he was 9, when Tom and his wife, aware they could no longer care for him at home, moved their young son there.
Due to a curvature of the spine, Tom says Patrick has difficulty walking — a skill he didn’t master until roughly his eighth birthday — his slow gait aided by special shoes. These days, Patrick can dress himself, but brushing his teeth and shaving lay beyond his abilities. When he’s around, Tom does the shaving for him. At other times, the Rainier School staff obliges, as part of the ordered routine and low-stress environment Patrick requires in a place that he considers his home. “Everybody knows everybody else,” Tom says, adding, “At Rainier School, he’s happy.”
Except when Patrick’s daily routine changes at the state-run residential care facility, as happened recently. During a 10-month span the Department of Social and Health Services let go of nearly 100 part- and full-time employees due to budget cuts. Staffing configurations had to be altered. And, disturbed by the reorganization, Patrick, according to Tom, became hard to handle. “It caused some trouble,” Tom, who serves as president of Friends of Rainier, recalls, leaving out the specifics.
Plaque that resides at the entrance to the Rainier School in Buckley, Wash.
But another change to Patrick’s ordered routine may lie in his future, again precipitated by budgetary belt-tightening: the state has proposed downsizing and eventually closing Rainier School by 2014. And with that possibility, residents of both the Rainier School, and the tiny town of Buckley where it sits, could find that a weak economic reality may usher in times of woe.
With Washington facing a $2.6 billion deficit, Gov. Chris Gregoire has sought ways to bring the state’s books in line. As a partial solution, Gregoire revealed, in her Jan. 12 budget, plans to close part or all of 10 institutions operated by the state. Five would be correctional facilities (Pine Lodge, Larch Corrections Center, Autanum View and a unit each at Walla Walla and McNeil Island); three juvenile rehabilitation centers (Naselle Youth Camp, Maple Lane and Green Hill Schools); and two residential health center (RHC) facilities. The first RHC slated for closure would be the Frances Haddon Morgan Center in Bremerton, with slightly more than 50 residents who live with autism and/or developmental disabilities, scheduled for full closure by 2011.
The other would be Rainier School, which would begin downsizing in 2011, with the facility to be shut down in 2014. Yet the impact of closing Rainier School, some state elected officials assert, would upend the lives of the facility’s residents, along with devastating the economic and communal livelihood of Buckley.
Pat Johnson, mayor of Buckley, estimates the shuttering of Rainier School would result in the loss of nearly 1,000 jobs — the facility, the town’s largest employer, maintains a staff of approximately 950 people — and as many as 400 homes. “Stop and think about it,” Johnson says. “Four hundred people are going to lose their homes.” Buckley and Rainier School share a water system, Johnson says, and jointly own water treatment plants. The 370 residents of the facility are tallied as part of Buckley’s census rolls — they account for roughly 8 percent of the population — and lower population totals mean a reduction in the tax base. That amounts to less money in the town’s general fund. Johnson predicts the town’s budget could suffer a “$2 million hit.”
But the facility also represents a community within the community of Buckley, says Johnson, one comprised of those who are medically fragile. Since many Rainier School residents may not realize the future fate of the facility, and most can’t vote, she believes that someone must speak up for them. “It’s our responsibility as government officials to take care of our most vulnerable citizens,” says Johnson.
Sen. Pam Roach (R-Auburn) agrees. Sen. Roach says that she’s called meetings with state legislators, Mayor Johnson and the Friends of Rainier, to craft a new vision to save the facility, one that involves continued education for residents over 21, public outreach, better utilization of service and infrastructure, including 100,000 square feet of storage beneath the facility, and autism research. (It’s unclear whether Sen. Roach helped to pen the vision statement before or after being banned from the Republican Caucus on Jan. 20, for allegedly mistreating staff.) Imagining new ways to keep the facility open, she believes, is paramount. “In times of budget [reductions],” Sen. Roach says, “we don’t go to those who can’t fend for themselves and cut them first.”
Last year, the State Legislature passed House Bill 1244, which, related to fiscal matters, allowed for a study to determine the efficacy of institutional closures. While the firm Murray and Associates took the lead on the entire feasibility study, a second firm, Davis Deshaies LLC, looked at the impact of closing RHCs. The state maintains a total of five RHCs: Frances Haddon Morgan Center, Rainier School, Fircrest School, Yakima Valley School and Lakeland Village.
At a Jan. 13 Senate Ways and Means Committee work session, Norm Davis of Davis Deshaies informed the committee that Washington’s RHCs are expensive to operate — on average, roughly $500 per resident per day. Yet most families with a relative in an RHC did not want the facility closed and believed the relative shouldn’t be moved. “This is not a divided community,” Davis said.
In its analysis, his firm recommended the state could reduce 250 beds — slightly more than a quarter of the total it maintains — in all its facilities by 2013. By 2019, he continued, all but a few beds would be left over at three remaining facilities. The closures, the study notes, would initially cost $1.8 million more than is already budgeted for in fiscal year 2010; by 2013, however, expenditures would break even. From then on, more than $4.3 million would be saved each year.
Yet the former residents would need to be relocated. The study recommended that they be reabsorbed into communities across the state, placed in a network of state-operated living assistance facilities. The study advises that this network would require “substantial refinancing and increased capacity” to meet the needs of those moved out of RHCs. The governor, according to her Office of Financial Management, agreed that communities needed increased capacity to handle residents displaced by closures. No plan to increase capacity was offered. Currently, there are 135 contracted agencies that provide supported living assistance to more than 3,800 state residents with developmental disabilities.
On Jan. 27, numerous state senators introduced a new bill, SB 6780, which states a “person with developmental disability may not be moved from an institutional to a community setting until sufficient services and support arrangements are authorized and funded.” The bill also asks that by Nov. 1, DSHS provide “timelines and estimated costs” to ensure such community settings exist. The bill will have an 8 a.m. public hearing in the Senate Committee on Health & Long-Term Care on Wednesday, Feb. 3. To have a life, the bill must make it out of committee by Friday, Feb. 5.
But for Tom Dean, moving Patrick to a new facility in a different community, away from the place he’s lived for almost four decades, won’t help his son. A new residence may not have all the services Patrick requires, including active treatment. The disruption to his schedule, he says, would only cause more outbursts and adversely affect his health.
And he points out that, according to the study conducted by Davis Deshaies, downsizing Rainier School for closure wouldn’t amount to immediate cost savings. Instead, he believes, closing it would wipe out a community of some 400 severely handicapped residents, which would amount to a much higher cost, for Patrick and others, not to mention the people of Buckley. He sees only one solution: “The answer,” he says, “is keeping it like it is.”
Comments
By Sarajane Siegfriedt on February 3rd, 2010 at 1:31 pm
This article is extremely one-sided. It does not present the case for moving Rainier “School” residents to group homes in the communities where their families live. I am the former director on such a group home for people with developmental disabilities. Patrick Dean sounds like many of our residents. They have flourished in a less restrictive, non-institutional setting. Many have part-time jobs and participate weekly in sports and recreation activities. They choose what they want to eat and help prepare it. Studies show that many behavioral problems diminish or disappear when residents are moved out of institutions and have more choice about who they live with.
While Patrick’s father has concerns, he has no experience with this alternative. Group home licensing requires over 40 hours of training for each staff, yearly refreshers and continued oversight by DSHS. Complex medications require nursing assistance registration, training and oversight.
Closing the Rainier “School” and the other four institutions would allow the state to serve three times as many people in community settings. There is a waiting list of thousands. This housing market offers a perfect opportunity to buy three- and four-bedroom ranch homes at affordable prices. The State Housing Trust Fund and the State Finance Commission are the primary funding mechanisms. At least 11 states have closed all of their institutions for people with developmental disabilities. This shows that every resident can be accommodated in a less expensive and more integrated setting in the community, increasing their choices and living closer to their families.
There was a landmark U.S. Supreme Court decision L.C. vs. Olmstead that forced the State of Georgia to provide support for residents of the state institution to live in a far more integrated community setting with adequate services, if they were capable of doing so. I’m at a loss to understand why this decision hasn’t been applied to these institutions. I applaud DSHS for moving continuously in this direction, lowering the population from about 5,000 in five institutions, to about 900. It should be zero.
Any legislator arguing for keeping the institutions should offer specific revenue sources, or tax breaks canceled, that would add up to the millions that would be saved each year.
By Sarajane Siegfriedt on February 3rd, 2010 at 1:53 pm
One more thing:
“This is not a divided community,” [Consultant] [Norm] Davis said. This is, indeed, a divided community. The parents of the 900 or so residents of DD institutions, the unions and local business groups are on one side and the parents of many thousands (6,000 to 9,000) of unserved adult children with developmental disabilities living at home with aging parents, represented by the ARC of Washington, along with underpaid providers of group home services are on the other side. No story on this topic would be complete without asking the ARC and the service providers for a comment.
By Andrea Kadlec on February 4th, 2010 at 2:01 pm
As a single mother of two teenage daughters, both with disabilities, and someone with a journalism degree who has worked in the disability rights field for 10 years, I was extremely disappointed at how slanted this article is. From a news source that touts itself independent, we could certainly have used a fresh and unbiased perspective on this issue.
Washington is behind the national curve of deinstitutionalization. Providing services in large institutional facilities, with high overhead costs and less tailored services is an outmoded service delivery model. People with very complex medical needs and significantly-involved disabilities can be, and are, served in the community, and studies show these community-served individuals have a greater likelihood of adaptive behavior skills* and greater freedom and autonomy.**
The residential habilitation center (RHC) downsize opposition swell is generated by parents and guardians who have institutionalized family members or clients, and from unions and employees who are holding on to jobs. This vocal group has done what it can to saturate the media; but its aim is problematic.
Research shows that parents who were often as a group initially opposed to deinstitutionalization were almost always satisfied with the results of the move to the community after it occurred.* I have yet to meet a parent who wanted to place a child in an institution. This decision comes when one is at the end of his/her proverbial rope, when no known alternatives exist. The myth that these individuals’ needs cannot be met in the community is perpetuated; but each time I have visited residential habilitation centers across the State, I’ve run into individuals with disabilities less significant than those of my daughter, with a purported IQ of 23, who receives all of her services in the community.
Royale states closure of Rainier School, for the town of Buckley, “could find that a weak economic reality may usher in times of woe.” Our state has not yet discerned that it is a discriminatory business practice to balance economic policy on the backs of individuals with disabilities. Regardless, state-operated living assisted facilities (SOLAs) and other skilled and highly varied job opportunities will foster a community with appropriate, flexible, community-based supports for those who move from institutional settings. These jobs can and MUST be moved into the community.
It is true that there are initial costs associated with downsizing; but study after study shows that in the long run, savings are generated. The Feasibility Study for the Closure of State Institutional Facilities, which Royale discusses, cites a savings of 47 million per state fiscal year after 2018 with responsible downsizing and consolidation of our residential habilitation centers.
These facilities will be closed eventually. It is inevitable. Continued fear-based decision-made policy and posturing community services against institutional services serves no one in the end. Instead, we could all work together to realize a robust community service system that meets the very diverse needs of persons with complex disabilities via a highly skilled and engaged work force. This would, for many individuals and their families, create an opportunity of autonomy and independent living previously unthought-of.
This is the side of the story that is continually untold. Unfortunately the media, on this issue, continues to miss the mark.
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* Kim, S., Larson, S.A., and Larkin, K.C. (1999). Behavioral outcomes of deinstitutionalization for people with intellectual disabilities: A review of studies conducted between 1980 and 1999. Policy Research Brief (University of Minnesota, Institute on Community Integration), 10(1).
** Heller, T., Miller, A., Factor, A. (1999). Autonomy in residential facilities and community functioning of adults with mental retardation. Mental Retardation 37, 449-457
By Michael T. Bailey on February 5th, 2010 at 8:16 pm
People with disabilities are either people like the rest of us, deserving of a real life, or they are perpetual children forever in need of care. They are one of the other. They cannot be both.
This article, sincere though it may be, is simply a restatement of the pro institution dogma of separatism, isolation and perpetual childhood. It is an old argument, easily refuted by facts and experience. It is also immoral and wrong.
Ten years ago I had a leadership role in the political process of closing Oregon’s Fairview Training Center. At its’ peak 3,500 people with disabilities lived there and were supervised by nearly that number of public employees who exerted considerable economic influence in Salem.
At its peak Fairview was justified as a humane refuge for ‘imbeciles’, ‘mongoloids, ‘idiots’ and ‘cripples’ who needed protection but who really needed to be out of sight and out of mind.
By the time we seriously addressed closure only about 300 residents remained and by then the justification had become the myth of the worst of the worst. These residents, we were told, were so severely disabled that it was simply impossible to integrate them into the community.
But Fairview was closed and each and every resident now lives in communities all over Oregon.
In fact Oregon is the only state that has neither an institution nor any Oregonians farmed out to other state facility.
The reality is that people deserve and want to live with others. They want and deserve family, friends and relationships. And in my state everyone has that. Or at least, like the rest of us, the opportunity.
I am President of the Board of Directors of Disability Rights Oregon. We are the officially designated Protection and Advocacy agency for Oregon. On the board with me is a man who spent his childhood in Fairview. He was released to the community but forced to leave the woman he loved behind. He conspired (as the papers said then) in her escape. Once captured the state allowed her to remain free. They have now been married for nearly two decades, live in their own home and have jobs. Yes, they get a level of support. Not a one size fits all level of support but the appropriate level to meet their needs.
Steve and Sally are just one example of thousands of others once labeled ‘hopeless’ ‘severe’ and ‘incurable” who now live among us and take the same risks, enjoy the same pleasures and play the same role in their community that the ‘normal’ population has always enjoyed.
Institutional care is segregation. It is an artificial demarcation of an out dated sense of worthiness and unworthiness. It is the past. The sooner it is relegated there the better.
When Fairview closed ten years ago this month I was present and wrote about the experience. That article closed with these words.
Farewell Fairview Training Center. You were born of a bad idea in 1911. You left us on a brisk and wintry Oregon morning. Rest in peace. May your kind never pass our way again.
It is not too much to hope the same for Rainier School.
By Kris Brott on February 6th, 2010 at 2:16 pm
I am the sister of dd 63 year old twin brothers who reside at Rainier School. I also volunteer once per month there as a DJ and have a dance for any residents that can/would like to participate. Michael Bailey’s comments above (“People with disabilities are either people like the rest of us, deserving of a real life, or they are perpetual children forever in need of care. They are one of the other. They cannot be both.”) denies some very important realities.
1) There is a wide range of developmental disabilities, combined with a wide range of physical/medical issues, combined with a wide range of behavior issues amongst the dd population. Much of the population currently residing in the RHCs are amongst the most medically fragile, most prone to behavioral problems and have the highest level of mental disability. Someone like Angie, who is non-verbal, has seizures, has trouble with walking, has to have her food pureed and has the mental capacity of a 2 year old, is not able to dress herself without assistance, eat without assistance, etc. let alone take a bus, hold a job or get married.
2) It is simply not the case that the “community is good” and the “RHCs are bad”. The RHCs have come a long way in the last 10 years or more in improving the living conditions of those who live there. At Rainier School, they are housed in smaller cottages, with staff that have long term experience working with dd people and provide a higher level of supervision than is often seen in the community settings. The residents of Rainier do have relationships, friends and family. My brothers like where they live because they are near enough to our family that we can participate in their lives, because they have known the staff there for years and consider them a second family and because they have friends amongst the other residents. They have a large campus that provides a more secure situation where those who are able are free to ride their bikes, walk around, go to the on-campus coffee shop, etc. There are job opportunities in the green house, the wood working shop, the laundry, etc. There are recreation opportunities (dances, parties, special events, etc. as well as a swimming pool – that was recently closed due to budget cuts). There is medical/dental care that is provided by people who are used to working with dd patients. I would argue that this type of setting provides the most freedom, security and quality of life for a certain segment of the dd population.
While many dd people have successfully transitioned into community living (which I think is wonderful!), there are plenty of nightmare situations that have also occurred for a variety of reasons (and to say, like the person above did, that we do not have experience with community placement is simply not true – most of us have our own personal horror stories that we can relate about the times are loved ones were placed into the “community”). 1) Too much freedom/lack of supervision in an unsafe setting – my brother (back in the 1980s when he was placed in the community) was arrested twice for assault. On one occasion, he bothered a woman who was coming out of a grocery store because he wanted one of her pops. This resulted in his arrest and placement into the general population of a jail for 3 weeks, with non-dd inmates who taunted/mistreated him. All you have to do is ask policemen what they have witnessed in regards to dd individuals being harmed (rape, assault, etc.) or harming others and being arrested and dealt with by police/medical personnel, etc. that don’t have experience in dealing with dd individuals to understand the downside to community placement of some individuals. 2) Abuse/neglect by caregivers. Much is known of the past (and some present) cases of abuse in RHCs, but with much less oversight of community caregivers, not as much is known of how often this occurs in the community settings. I encourage people to take a closer look at the real life results of the closure of Fairview Training center in Oregon that Michael Bailey is so proud of, as well as (see – http://blog.oregonlive.com/oregonianextra/2007/11/story_main_01.html and http://www.oregonlive.com/special/index.ssf/2008/03/after_fairview_protecting_john.html). Also relevant is a recent series of articles from the Seattle Times regarding abuse at group homes for the elderly (see – http://seattletimes.nwsource.com/html/seniorsforsale./2010939195_seniors31.html) 3) Not enough medical support for those with medical disabilities. My other brother was never placed in the community because at the time, he was already needing insulin shots for his diabetes. They tried for a year to find a suitable place, but then gave up. Or take Angie for instance, who is has problems with seizures. Her father had her living in a community setting until they told him that they could no longer care for her medically. He fought to get her back into Rainier School and he is now helping to lead the fight to keep it open.
From a moral perspective, I come to the opposite conclusion that some of the above comment makers come to. I think it is immoral to pretend that equal or better care is currently available in this state for much of the high needs population at the RHCs. The reality of closing these types of facilities (or just moving dd people around a lot) has been mental/emotional trauma, as well as untimely deaths (one of our legislators, at a community forum, said that the death rate increased 67% in California following the closure of its RHC type facilities). I believe that real people whose lives have real value will be harmed if these facilities are closed. That is why we, as family members are fighting to keep them open.
From a cost perspective, we do not believe that the state will save money at all. Individuals who are high cost living in an RHC will be high cost in a community setting. Capacity does not exist to support the movement of 900 people into the community. SOLAs and other facilities will have to be created. The studies done in the past do not take into consideration the costs in the areas of transportation, medical care, etc due to the increased use of 911, ambulances, police personnel, fire personnel, hospital/medical personnel etc since these costs are absorbed by other areas of the state budget and not out of the DSHS budget.
Those of us who support the continued use of the RHCs would like to heal the divide amongst the dd community. We would like to see this state make real reform that can benefit everyone. We think that the RHCs can be used to increase the level of services for everyone. They should be opened up to more respite/emergency/transitional beds (a desperate need for families whose dd loved ones live at home with them). They should have their medical and dental clinics open to all of the dd population (another desperate need – many medical/dental people do not have experience or the desire to accommodate dd individuals). This would also be an income source for the state to help offset costs. Other services, such as the pool at Rainier could be opened up to the community or to the dd population as a whole as a great source for recreation as well as physical rehabilitation (as well as another income source to help offset costs). Relationships with organizations such as the UW medical college, could be re-established to provide future training for medical/dental caregivers. RHCs could also be excellent places to provide more training for caregivers as well as training/learning for dd individuals.
The RHCs of today are not the RHCs of the past. Let’s move forward with reform that will benefit the dd population as a whole, while not sacrificing the quality of life for any of these real, valuable people.
By Trevor Griffey on February 9th, 2010 at 8:44 am
Publisher’s Note: Because of the length and quality of these posts, we have foregrounded two as free-standing op-eds, which we published on February 9, 2010.