Home, sweet home. What does this phrase mean to you? What kind of feelings does it stir inside? The feelings and thoughts attached to these words are as unique and different as the person hearing them. Generally though, there is agreement that the word “home” stirs feelings of warmth, welcome, and a sense of belonging in addition to a place of shelter where needs are met in a caring environment versus the word “house” – a physical place of residence providing shelter.
It was with some of these thoughts in mind that I ventured out to visit two of Washington State’s Residential Habilitation Centers (RHC’s) at Fircrest & Rainier in Shoreline & Buckley respectively. Having heard arguments on both sides of the debate – for & against consolidation & closure of these facilities, I wanted to see for myself and form my own opinion. “Are these institutions really home where people live in a place of warmth with a sense of belonging where their needs are met in a caring environment? Or are they institutional houses where people are placed with their basic needs met?”
I was particularly struck by the locations of both of these RHC’s. They are both located in lovely surroundings on large parcels of land, beautifully landscaped in picturesque settings, yet notably secluded and separate from their surrounding cities and communities. Arriving at Fircrest, I couldn’t help but notice the age of the brick buildings, the overwhelming impression - cold and impersonal. Of course the large unsightly food, laundry, and garbage carts located outside the front doors of each cottage confirmed I had indeed arrived at an institution versus a community. Rainier on the other hand reminded me of an army base or prison facility behind the gates and fences with its old-style stark white peeling paint and red Spanish tile roofs, and buildings connected by long covered walkways.
I found the facilities at each campus were clean and maintained, though they felt cold, stark, archaic, and in great need of modern updates both inside and out. I found it peculiar that décor on both campuses looked like thrift store purchases from many years gone by, curled posters, cheaply framed faded prints, outdated curtains hung on barred windows if at all. I appreciate the work that these residents perform: sterilizing used Comcast remotes, shredding documents, thrift store duties, and pouring beautiful paving stones. However, the biggest factor I found lacking was the sense of community. I kept pondering, “How will the community ever be able to appreciate the values of self-determination, independence, inclusion, integration, and productivity for people with developmental disabilities if they’re kept isolated and segregated? When was the last time these adults and youth went on a vacation, went camping, saw a school play, or heard the laughter of a child?”
At Fircrest, each living room is arranged with one shared T.V. and generic “Dr’s Office” chairs set around the sparsely decorated walls of the vinyl floor room. Each child, youth and adult at Fircrest has their own very small bedroom, meagerly furnished with a twin-size bed and dresser. Out of the dozen or more bedrooms I visited there, only a meager few appeared personalized in any way. I thought, “Even college dormitories are more appealing than this”.
To my surprise, I did observe more texture, color and variety when it came to décor and “home-like” comforts in the Rainier cottages, where 8 residents share two warmly decorated living areas per side with more comfortable furnishings, overstuffed chairs and recliners. I noted that some of the Rainier residents also share larger more personalized bedrooms, 2 to a room, comfortably furnished with warm décor. Colorful attractive home-style dinnerware adorned Rainier’s tables while residents ate from standard melamine cafeteria dishes at Fircrest.
I have a daughter with multiple disabilities, similar to many of the residents in these two facilities. When Jessica was born with Down syndrome and cerebral palsy, I was given the option to place in her in an institution where she’d be cared for. As I toured the RHC’s, I kept thinking, “Would Jessica be comfortable enough to call one of these cottages home? Would she be happy with the lack of freedom, lack of choices and lack of independence? Is she really safer set apart FROM the community in an institutional house or safer IN a community home?”
I couldn’t help but feel sad and discouraged as I left these properties, wondering if the adults and youth were there willingly or if they’d ever been given a choice. As I pondered the thought of “relaxing and having a cup of tea in the Rainier Cottage”, a wise friend kindly reminded me of the secrets behind these walls – the abuses committed when there is no choice, no freedom, no other option, no way of escape. Are these dear people really at Home Sweet Home or prisoners kept safe inside prettied up institutional houses? My friend is right; I don’t want to drink my cup of tea here either.
As I drove away from these RHC’s, these institutions, these duplex houses, I turned my heart towards the warmth of home. My heart felt lighter as I pondered my daughters, each with her own unique and different abilities - her sense of belonging, her safe place in our home where hugs abound, laughter comes easy, choices are made, freedom is earned and independence is learned. “Home Sweet Home” – the words have never meant more.
Joy Caldwell , Skagit County Parent Coalition Coordinator
(For photos and a more comprehensive perspective of Joy's visit to the RHCs visit http://paulandjgcaldwell.blogspot.com)
As a parent of a child with a disability, Joy Caldwell has been both a formal and informal advocate for families and people with disabilities for the past twelve years. Joy has developed and taught seminars and workshops to the general public, early interventionists, therapists, teachers' assistants, caregivers, support workers, and parents. During her time in Edmonton, Alberta, Canada, she served as Chairperson on the Executive Board of Directors for the Edmonton Down Syndrome Society for two years.
My brother has been living out at Rainier School for 25 years and he lives on one of the cottages. He was moved to Rainier because he was a behavior problem and wasn't adjusting to life in a group home. After moving to Rainier he calmed down and he is content and well cared for. The workers at Rainier are highly trained. He has been living in his cottage for many years and there is a very real family relationship amongst the residents as well as the workers. Being away from the community has many advantages such as allowing more freedom and safety for the residents which contributes to a higher quality of life. They have jobs and activities and those who are more able bodied can walk to the coffee shop without fear. RHCs offer an excellent alternative for those who cannot adjust to living in the community and those who need more intense care. RHCs could be a community outreach resource for families who choose to keep their loved ones at home. They could serve these families with specialized medical and dental care as well as respite care. We need to work together to keep the ability to make choices for our loved ones. If RHCs are closed they will be gone forever. I respect the fact that you want to keep your child at home. This is not an option for everyone. Living in an RHC is not "institutionalized" living but living on a cottage outside the community in order to keep the residents safe and offer them a quality of life.
ReplyDeleteFamilies who say they tried the community before an RHC and it is not an option did so long ago or in residential supports that were not what the person needed. There is no one living in an RHC that you cannot find someone with the same level of need living successfully in the community now. It is a mindset of leave well enough alone, even if it is not really the best for the individual.
ReplyDeleteI am a 30 year employee of Rainier School and I have a nephew who lives in a for profit private group home. He attended White River School District in Buckley during his High School years and was job shadowed at Rainier School. That was 13 years ago. He has cerebal palsy and functions at a fairly high level needing only minor help with his grooming. I live in Buckley as do his parents (my sister) and he never fails to ask me if I think the people at Rainier miss him. He misses them. He also asks why he can't live there its fun. Kevin does not understand that his disabilities are not severe enough to enable him to even be considered for that type of living. Instead he is in a group home with 4 other men. He spend most of his day glued to a TV or playing a gameboy. He has no job as there are none, he has no planned activities, his care givers are just that. He has complained to his mother that he can't make the caregiver mad because all she does is scream at him. One of the men had a behavior and threw a chair. The police were called and that gentleman never came back. That would not have happened at the RHC. A day visit does not give someone a clear picture of a RHC. For every bad story you might have concerning a RHC I can give you an equally bad story about a person, not a client but a person who moved into the community. If you truly believe in choices then I would challenge you to ask some of the people who no longer live at Rainier if they are happier. I and many of us who work in the RHC's are family to forgotten individuals. I have celebrated birthdays and holidays with them. I have listened to their complaints and shared their joys. I am thier family. No where does it say that blood relatives cannot visit thier loved ones in RHC's but few do. Why don't they?
ReplyDeleteI do have many friends who have lived in institutions, in particular at Rainier. Mike and his wife Diane are good friends of mine and both lived at Rainier for over 20 years. They now live in the community, own their own home, have a daughter who is a teacher and Mike works part time and is very involved in community boards and activities.
ReplyDeleteI would challenge you to go watch the short You Tube videos of people who have live in institutions and never want to go back. You can see more than 20 of these individuals at www.arcwa.org/videos.htm
Thank you for the link to the videos on You Tube. I watched each one of them. I do not doubt thier testimonies or their life experiences. My comment was not to debate the issue of should RHC's exist only that they provide another venue for folks who have specialized needs. My issue was your description of peoples homes. I can take a sunday drive to Mercer Island and form an opinion about the people and their quality of life and then drive to the Hilltop in Tacoma and form a different opinion about those peoples quality of life. And if I do that then I am truly being judgemental as I am sure that there are very unhappy people on Mercer Island and very happy people living in the Hilltop neighborhood. Let us agree to have different opinions and hope for the best for all individuals no matter who they are.
ReplyDeleteSherry
I, too, visited Fircrest looking for a residential setting for our son. I came away with a totally different impression and thought how great it would be for our son - close to home yet safely cared for. He would be in the community that he has grown up in, there would be professionals around that are capable in working with developmentally delayed and mentally ill residents. Finding a place that can accommodate the needs of our son was virtually impossible. Unfortunately, there was not a bed at Fircrest for him and after 7 months of continued crises, we were able to move him to Frances Haddon Morgan Center.
ReplyDeleteHe has thrived there, is very happy, is involved in school and the community. Every family has the opportunity to encourage community building. Even on the campus there is a community and our son is not isolated or "put away" at all. This move has been a lifesaver not only for him but for the rest of our family.
Now we are facing the closure of Frances Haddon Morgan Center. We are fighting to maintain this critical resource for those members of our community that need this type of intensive support to be healthy and safe and be in the community as a whole.
Well, this much is clear. There are many people who simply feel that because something works for them it should for everyone. Often they are driven by an ideal that everyone regardless of the level of their ability or disability should and must be fully and seamlessly integrated into mainstream society just as if they can speak, understand and do all the other things that most people do without thought. I am saddened that such naïveté can drive so much zeal, and frustrated that reasoning people listen to them. Their selfrighteousness is frightning in its intensity.
ReplyDeleteMy sister, Kathy, lives in a small community within the community of Shoreline. She lives at Fircrest. I love Fircrest for her. She is well loved and extremely well cared for by stable staff who have memorized more than 100 little things to manage her. With profound MR,severe CP, epilepsy and bipolar disease, she can be a challenge, but when handled right, she is a delight. I am especially grateful that I can, with confidence, leave her in their care. Although she eagerly comes out with me every weekend, she loves her Fircrest home, housemates, and caregivers and always lights up on return. As I left, this evening, her laughter was rippling down hall, so happy to be with her "family."
ReplyDeleteWe hear about the long, "community" waiting list of people unable to obtain services, yet ARC and other "community only" voices are promoting an RHC closure bill in the Senate which would cost far more than $161 million to implement (Based on the cost of the last, smaller, closure attempt.) Even part of that money would go a long way toward relieving distress of unserved families. If the zeal demonstrated by ARC could be redirected from attacks on RHCs to appropriating money to help the people on the waiting list, real progress might be made.
We should be working together for the good of all people with DD. ARC should be working in support of RHC residents as well as community residents. My parents were working on these issues when ARC was founded for the good of the whole dd population. Criticizing other peoples' choices for their loved ones and working hard to wreck their care and services truly is not worthy of the love and hope that were poured into it when it began.
The wide range of disabilities that affects people with DD calls for a wide range of service choices, including RHCs. I cannot see through your eyes, Diana and Joy, so I cannot know why you cannot see all the good there is in these 5 important havens. If I had my way, we would all be working together to bring what is available in the community up to the safety, quality of service,& program standards set by the RHCs and to make what is available to RHC residents available to people who do not live in them. I pray that day will come.
SB 6780 is a new bill that The Arc very much supports. We are not just about moving people to the community from institutions. We strongly advocate for more and better services in the community. SB 6780 does just that. It ensures that each individual now in an institution has a transition plan designed just for them, determines all the supports that they need and makes sure they are available before the person moves.
ReplyDeleteIt also allows for the creation of State Operated Living Alternatives (SOLA), small homes in the community that someone in an institution can move to and if they have a current staff person that works with them at the RHC, that staff person can continue to work with them in the SOLA. This will help many of the employees keep their job and help the client with the transition.
Also, instead of the expertise of some staff in RHCs being only available to that limited population, those experts would be out serving so many others in the community too.
Keep in mind, 21% of the DDD budget is currently spent on only 3% of the DDD caseload at RHCs. The other 97% choose to live in the community but can only get limited funded services because the RHC is the only state entitlement.
RHC were created by early parents of The Arc. That does not mean times haven't changed and we now advocate for a better way. The Quality Assurance studies done on people in our state who have left an RHC show that after six years in the community, not one of them would choose to return to an RHC. Change can be difficult at first, but we believe these changes are worthwhile ones to make.
Diana Stadden
Mom of a 16 year old son with autism.
Thanks for the dialogue, Diana!
ReplyDeleteSB6780 would strip RHC residents of important protections, plus evict them from their homes and the services and activities that make their lives bearable and the quality assurance provided by Federal Audits. While it would do nothing FOR them. it would, greatly distress a good many and present no end of complications to their care. 6 people died very soon after the forced moves from Fircrest 6 years ago and many others suffered terribly, demonstrating their distress by shredding their clothing with their teeth, self mutilation and acting out against staff and other residents. It was heartbreaking. After litigation, some were returned to their Fircrest homes. No one currently living in an RHC is a prisoner, nor do any live like prisoners. Their rights are very strongly protected by Federal statute and audits.
Because of the campus and centralized services, they can have active lives in spite of their extremely severe and complex medical, physical and behavioral disabilities.
I cannot argue percentages such as the 3/21%. Assuming it is accurate, without the economy of scale afforded by RHCs, the costs of the high-maintenance care required by current RHC residents would be higher, leaving even less of the budget for the rest. I am a nurse who has cared for such people in the "community." Not only can care in the "community" be much more expensive, without access to the centralized services, it is much more difficult to get people to their appointments.
Those of us who have chosen RHC living for our loved ones have also had them at home and in "community" facilities, so we find ourselves wanting for those whose needs are not met in the "community" to have what they need, too. We would like RHCs to remain the option that they currently are, with doors swinging both ways, meaning that people can be admitted, and those who are ready for community living can always go. Per capita costs could be lower in the RHCs if people who want the services, there, are allowed admission. (Economy of scale) There should be a way to apply the savings from the choice of RHCs to benefit people on the wait list, or to subsidize more "community" professional services.
We know that professional services are very difficult to obtain. For a while, Fircrest's therapists were making home visits and people living off campus were coming to Fircrest therapies. We would like to see that service- sharing resume and be expanded for "community" residents.
Saskia Davis,
RHC resident sister and guardian