Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

Toward this potential, DD EXCHANGE is for conversation, civil sounding off, sharing of stories, experience, information, resources, and inspiration, giving and receiving support, and creative problem solving.

Finding Your Way Around

TO SEE OTHER'S INPUT: below each post on the right, click "links to this post;" or in the left side column, under "Labels," click the discussion link that interests you.

If there is no comment box below the post, click on
"# comments." It should open one.

TO CONTRIBUTE: add comments to posts in comment boxes &/or submit an article. Comments may also be sent for posting on your behalf. Email address as follows:

EMAIL: ddexchanges@gmail.com

MAILING LIST: add or remove name:
send request to email address, above.

WEB LINKS: to access other websites of interest, in the list to the right, just click on the underlined name.

FOLLOWERS: interested people, websites, organizations, businesses
who follow our discussions & choose to be public about their support.
Become a follower. Public support is a good thing!

Sunday, February 28, 2010


The House budget doesn't close Frances Haddon Morgan Center; The Senate budget would close it .

FHMC families are frightened at the possibility. One of their many reasons is inadequate "quality assurance" in the "community." Inadequate, that is, to protect cognitively impaired children or adults with severe developmental disabilites.

This is not to say that all “community” venues are bad, only that the QA system that should assure that they are good is ineffective. In an RHC, if there is a problem, someone sees it and it gets corrected. Standards are high. Enforcement is strict.

Not so in the "community." Neglect, abuse and mistakes can go on for months, even years without anyone noticing or fixing them. Audits are infrequent, inadequate and scheduled. Even State Operated Living Arrangement ( SOLA) workers report this; and some state auditors describe their reports & recommendations have been rewritten by their supervisors.

"Community" supervision of workers can be inadequate or non-existent. Caregivers are too often undertrained. Medications with critical side effects can be administered by workers with no pharmacology background. Supervision from off-site is considered sufficient for non-nursing home venues. This puts the resident at risk. Nurses working on-site would not be allowed to delegate to non-professional staff the responsibility for administering medications. That medication administration by non-pharmaceutically trained personnel is cheaper is not a reason to allow it for people with dd. Cost effectiveness should never pre-empt safety.

A child of 9, paralyzed, at risk for aspiration, was left by the nurse in his mother's care. The nurse returned a little while later, having forgotten something. She found the mother had driven away, leaving the child alone in the house. When she reported it, the nurse was told that nothing could be done unless there were other offenses. Others were known, but none were on record.

An adult male, developmentally disabled, cognitively arrested at an early age (mentally retarded) was wheelchair-bound. Having been been moved to shared housing from an RHC several weeks before, he was falling asleep with his face in his food. On questioning, his roommate said this had been happening ever since he had moved in. When called upon by the roommate to attend to the sleeping man, the caregiver only sat him up and instructed him to eat, then left him alone. This was observed three times before the caregiver took the man away from the table. Next to the table, there was an open door leading to a stairway, where, if the sleepy man had been awake enough, he could have fallen down the stairs in his wheelchair. The man's behavior suggested that there was a medication adjustment needed or that the man might be having unrecognized seizures. DSHS was expected to return in about 6 weeks for a routine evaluation of the new living situation. Evidently, the caregiver did not associate the sleeping behavior with anything to be concerned about, as he had not reported it.

One mom tells of her son's hand having been deeply cut while he was dumpster diving for food, an activity that was approved by the person in charge of him at the group home where he was living. As she tells the story, the house would run out of food because the cognitively arrested residents, would spend all of their allowance the first day the money came in, eat all of the food, and, then, because there was no more food, the dumpster diving would become necessary.

Of course, she had her son moved, but what about the other residents? What if they had less attentive parents or their parents could not monitor them, or they were deceased?

One wheelchair-bound resident had been moved from an RHC to a house in which he could not access the bathroom because his wheelchair would not fit through the unmodified bathroom doorway. This was described by a visitor to the house.

Reported by former RHC resident families: after more than a year, day programs and activities promised at the time of moving from the RHC had not been made available for several; and for others, they had been withdrawn after the funding to the house had proved insufficient.

A young man with more or less high level mental retardation was speech impaired. He had no guardian or family. After weeks of missing him where he worked, the organization that employed him found him in jail. Since he had no ID on him, no one had been notified. The people who knew him were not allowed to have him released into their custody. They wound up arranging for a guardian ad-lidum in order to effect his release.

An RHC resident with a feeding tube and a history of aspiration pneumonia had been moved by DSHS to an adult family home. The RHC 's orientation for the caregivers and the instructions which accompanied the woman were very specific about the frequency with which she needed to be fed and the small quantities which were required in order to prevent aspiration. Apparently not having sufficient staff to observe the prescribed routine, the staff increased the quantities and decreased the number of feedings. The patient died, having aspirated regurgitated formula. As told by RHC staff loved her.

A big, young man who had been set up in an apartment with people assigned to watch over him looked normal, but was cognitively arrested and did not understand that it was not OK to take things that he found in stores or other peoples' homes. Those responsible for him reinforced his belief that it was OK by simply paying for whatever he had heisted. Finally, one time, the police were called. He became scared and upset, lost control. He was tazed by frightened policemen

Who can blame FHMC families for being frightened?

Our public servants should be held accountable for assuring that mentally retarded residents living in "community" homes are safe and well provided for. But the DSHS "community" system of QA is not set up to protect the individuals for whom it is responsible.

What about this situation? Should we be sending more people into poorly regulated environment? What can we do? What should be done? If you could design a system of QA, what would be the elements of it?
You are powerful.
Together we can be awesome!

Friday, February 19, 2010

LONNIE’S STORY by Lonnie's Mom

Lonnie was one of those children who were admitted to Rainier School when he was barely fourteen years old. He will be sixty-two this year. He is the oldest of five siblings – one brother and three sisters. From the day Lonnie was born, he was extremely hyperactive and had an attention span of zero seconds. Elementary school class work was difficult for him. He couldn’t stay focused. Now, we call this syndrome dyslexia with ADHD, Attention Deficit Hyper Activity Disorder. For years Lonnie had difficulty falling asleep at night. When he was five years old he was diagnosed with epilepsy. The mild jerks that occurred while going to sleep were petit mal seizures.

Lonnie became increasingly frustrated as he approached adolescence and the severity of his seizures worsened. He developed severe behavior issues, and grand mal seizures. He was placed in a special education classroom only briefly before he went to live at Rainier School. Our family was so exhausted from caring for Lonnie for so many years!

Lonnie has done well at Rainier School and still enjoys the rich, social interactions of a community that is appropriate for his disability. He has more friends than anyone else I know. He has the freedom and safety of living on a college-like campus, cared for by people in all departments who are sensitive to the needs of medically fragile, multi-handicapped people. Everyone is considered a direct caregiver and is expected to provide expert service.

He is not isolated and restricted from the so-called “community". Rainier residents make trips to nearby shopping malls, zoos, fishing ponds, etc. and participate in community events as well as host activities on their own premises. Every resident is enrolled is some sort of vocational training or active treatment program. Lonnie is a grand example of what Rainier School has done for a person with such complex needs. It is appalling that anyone would want to take this away from him and the other Rainier residents. The current focus should be on expanding the critical services and living arrangements that Rainier School can provide to the many underserved, off-campus developmentally disabled people.

LOOK AROUND YOU! Small community developments have sprung up all over the Puget Sound area and country: senior retirement homes and nursing homes of all sizes and description; a multiple variety of apartment and condominium complexes with shopping and entertainment opportunities on the same property; recreation and medical complexes to meet special needs. All the places in the surrounding region wouldn’t have been built if they weren’t determined to be the most economical and efficient way to provide their special services. It seems to me that the planners of our Residential Habilitation Centers (RHCs) were ahead of their time with building facilities that were appropriate for our developmentally disabled citizens. The RHC community is appropriate for meeting all of their special needs – developmental, social, vocational, medical, nursing, psychological, recreational, behavioral, personal self-help, pharmaceutical, etc. It is puzzling how some in the developmental disabilities community think otherwise and persist with trying to persuade others to think like they do.

Many of us have experienced following the “modern twenty-first century” thought of placing our loved one in a “community” home. We tried placing Lonnie in one of the well-supervised, high-quality group homes for developmentally disabled people – twice. Both times I had to remove him immediately when I discovered that he was having increased seizures because of missed medication and was literally being placed in life threatening situations from lack of supervision. By the community advocates own words, deficiencies abound. If this sector can’t take care of the “least” vulnerable people, i.e. senior citizens, how are they going to cope with the “most” vulnerable? They will predictably end up in hospital emergency rooms, city and county jails and prisons, or in revitalized city morgues.
Jeannie B., Lonnie's Mom
(For Friends of Rainier link, see list at right)

Tuesday, February 16, 2010

New at ActionDD & THIS BLOG IS "OURS"

Today, I want to recommend you to some new links and posts @ actiondd.org. (To go to the site, click on the word, "ActionDD" toward the bottom of the list of websites to the left. )

Thank you to Paul Strand, Actiondd's webmaster for the new information. It should come in handy as you write to and talk with your legislators.

I was pleased to receive, off line, a query about why I am not posting more often. Here are my top 2 reasons:

Even though I began it, I do not regard this as "my blog." Instead, it is "ours." I would rather leave some space for all of you than fill it up just with my perspective. I have been encountering a lot of valuable material which will be posted, but also I know some of you have been writing some excellent pieces that could shed light on subjects important to us all. Some of you have extraordinary stories to tell: cautionary and/or heartwarming and inspiring. Some have needs that can be answered by others. As the telling and sharing grows, the blog will take on it's own character, that is, ours, collectively; and more frequent posts will result as people begin to participate rather than just read my posts.

If you are reading this and what is stopping you from contributing is not knowing how to publish in the blog format, you can email your post to me at saskialuciannow@gmail.com. You might have noticed that a few others already have done that!



Sunday, February 14, 2010


What an extraordinary labor of love! The day was wet, cold and grey, the site: the sidewalk of a busy Bremerton street and a parking lot, donated by Arnold's Furniture. The event was the statewide rally to rescue Frances Haddon Morgan Center. A couple of portable canopies kept the food dry and provided dry space for conversation. Dedicated RHC proponents got drenched while chanting and waving signs. Passersby, curious to know the score, parked, walked back in the rain, inquired, and in some cases joined in! "How can I help?" was the question of the day! Frances Haddon Morgan Center, it turns out, is very well regarded by it's local community!

Since the Washington State Federation of Employees sponsored the rally, it was a foregone conclusion that they would be there, even dedicated caregivers from the other side of the Cascades who had braved treacherous driving conditions in the mountains. Since the proposed closure of FHMC threatens their loved ones, parents and guardians were expected, too.

The surprise was the RHC supporters from the "community." My question to each was, "What brings you here; why do you support RHCs? I talked with some who know former FHMC residents who, having moved to the "community" have not done well, with a former investigator who highly respects the abuse- prevention measures taken in the RHCs in contrast to what he found in "community" venues, with a special ed teacher who wants to retain RHCs as alternatives for parents who do not realize that, some day, their child may outgrow their family's ability to deal with escalating behaviors at home, and with an indignant grad student who, having taken the stakeholder "survey" for the "study" that is being used to justify RHC closures, found it to be a farce.

I overheard caring DSHS employees considering how to help an RHC resident whom they knew, who, they were told, was out of control in her new "community" environment. In fact, I heard more than one such conversation. Another conversation between RHC staff members focused on the potential loss of professional expertise and especially on the toll that dispersion of services would take on synergistic information-sharing among RHC professionals about individuals in their mutual care. I did not realize it at the time, but what I never heard was any consideration of potential job losses. Looking back, it seems overwhelmingly evident that the primary reason for the rally was the support of the services that are provided by FHMC for all the people who need them.

The day was an eye-opener for me, not in terms of the need to keep open the RHCs, but, rather, the range of supporters and the depth of their conviction and commitment.

Reminding you that we all have each other, and to the extent that we each want the best for each person with dd, we are all on the same side!


Friday, February 12, 2010

RHC Residents' Rights Rally

RHC Residents' Rights Rally Saturday, Feb 13, 11:30-4:00

Help save the rights of families to choose the services for their loved ones that serve their "best interests."

Families, caregivers & union members from across the state are coming to rally for our loved ones!

We will share stories, & make friends and connections

to become even more effective to sustain the rights of all of the state's qualifying residents with DD, ( not just the current RHC residents).

If you care about someone who lives in an RHC,

if you work in an RHC and care about the rights and wellbeing of RHC residents,

if you have a loved one who lives in the community and you want the peace of mind provided by knowing that, if your loved one, one day, needs such a haven, it will be there for him or her,

please join the party!

Families and caregivers are coming from

Yakima Valley (coming over a snow pass both ways)
Rainier School
Fircrest School

Come meet these and other FHMC families and staff who have been working to rescue the RHCs and the rights of the residents who need them.

WHERE: Bremerton: Corner of Kitsap Way and Adele Avenue (where you turn off Kitsap Way to go to FHMC) in Arnold’s Furniture Parking lot

WHEN: 11:30 am to 4 pm Saturday, February 13

Thursday, February 11, 2010


Thank you , everyone, for your letters to legislators, your stories that illustrate the value of RHCs! Be encouraged that they have paid off to the extent that the 3 RHC attack bills appear to be dead.

HOWEVER, please keep up your letters, calls and stories to legislators in order to prevent resurrection, next week, when the supplemental budgets are unveiled. If you haven't contacted your district's legislators, recently, now is the time to be sure they are up to speed!

You can find out who your legislator's are at: http://apps.leg.wa.gov/DistrictFinder/Default.aspx. Phone number: To find the phone number, click the legislator's name. Email. Find an on-line email form where you can paste in your message by clicking on "email".

You are powerful!


On Feb 10, 2010, at 8:16 AM, marsha sutton wrote:

Letter to Ways and Means committee February 10, 2010
We ask you to not support SSB6780 which fails to address our concerns regarding SB6780.

In 2009 my husband and myself spoke before the House and Senate giving details of our daughter Rachel’s abuse in the private and community care facilities which went on for several years until she was finally successfully placed in an RHC where she has been a resident for the past 26 years. Rachel lives as full a life as possible for a profoundly disabled adult with a severe debilitating seizure disorder. Rachel also has problems communicating except to the staff that knows her well. She has many friends and enjoys going out into the community when able to function where she is an integral part of her community.

Washington State has a shamefully high abuse rate of disabled persons which is on the rise in many private and community run facilities with well documented cases. Sadly many of these cases go unreported or prosecuted. There has not been nearly enough done to protect the vulnerable from abuse. Our State says that it aims to fix the problems that expose our growing population of vulnerable adults to this abuse and neglect. But tell us how this can be accomplished without considerable amounts of time and expense. So we question the motives of anyone who would place our most vulnerable profoundly retarded into a progressively unsafe environment.

We are appalled to think that some of our own State Legislators continue to justify savings to the state budget by placing our most vulnerable and profoundly disabled into the private sector when the facts state there are no savings to the State Budget with such a disastrous move. Lawsuits from death and abuse of the disabled caused by such a move would not be in the best interest of the State of Washington. Those who would benefit the most would be the for-profit private operated care facilities.

Mild and moderately disabled have had some success when placed in the community, however, the most severely retarded with more complicated medical and behavioral needs do not. The profoundly disabled resident of RHCs deserve the safety net of isolated high quality living/care facilities and the medical services they offer.

It is time our State makes a firm commitment to our most profoundly disabled by stopping the trend to remove their choice to live in a safe environment free of abuse and neglect.

"Abuse issues, are rated the number one priority by women with disabilities according to the American Delphi survey conducted by Berkley Planning Associates."

Mr. & Mrs. Steve Sutton

Added information not in this letter:
Disabled women, like children, are very susceptible to abuse. Statistics show that disabled women are abused almost twice as much as non-disabled women, That is astounding!
The paragraph below was taken from "Disabled Women Rank Abuse Number One Issue" created by Kayjay.
'Abuse issues, are rated the number one priority by women with disabilities according to the American Delphi survey conducted by Berkley Planning Associated in their survey. This indicates that the disabled women, themselves, recognize abuse (those that are able to do so), especially caretaker abuse, as a high priority issue that gets little attention from most service providers and policy makers. They share with their non-disabled counterparts the fact that their intimate partners may physically, emotionally or verbally abuse them. However, they are subject to abuses that non-disabled women don't have to worry about such as the denial of medication, withholding attendant services, or denying access to assistive devices.'
Mr. & Mrs. Steve Sutton

Tuesday, February 9, 2010

Dear RHC friends,

Below is what ARC has put out to their membership, today (excerpted.) This is really a shame. We should not be in the position of defending critical resources for people who already have been failed by the "community." Neither should "community" residents who genuinely do not have services be in the position they are. We should be working together to find solutions to everyone's needs. Once we have defeated this legislation, we can work to make common cause.

Please keep your personal stories coming, now to the Senate Ways & Means Committee with cc to your senator and the governor. You are doing a great job!


1. SSB-6780 would not provide equivalent services,"best interest" services, to current RHC residents. It would cause real harm to real people.


Please make that clear when you write your loved ones' experience to Ways and Means committee members and your Senator with cc to the governor.

3. RHCs are a resource that serves community residents, enabling them to succeed there: Respite & crisis stabilization, currently. RHCs could be of more use to the "community" by providing RHC based professional services to "community" residents.

If you are willing, you can also send a copy of your letter or your story to me, Saskia, for publication on this blog at saskialucianow@gmail.com , or you can simply paste your story into a dialogue box (to open box, click below on "comments" or "link.")

Legislators can be encouraged, later, if the bill survives Ways and Means, to visit the blog for a collection of the experiences.

People working in RHCs or SOLAs, who believe in keeping RHCs open, may also help by writing personal experiences that demonstrate their value.

If you are a community parent who wants RHCs to be in place on the day that your loved one needs them, please write, now, to Ways & Means committee members. In addition, you might take the opportunity to say what is lacking about the community system. Comments about Quality Assurance or the lack of it would help them understand. Also, if you are willing, the same input would be welcome on ddexchange.blogspot.com. You can either email me at the above address, or submit your story in a dialogue box below.

See the the ActionDD response to SS - 6780, posted yesterday. As you write, you may want to source it, or even attach it.

Thanks and more thanks! We are all in this together!

Here, excerpted, is what ARC is telling their members, many of whom do not realize how much RHCs have changed or how important they are. See below ARC for this writer's close.

ARC's notice to membership (excerpted):
Have you or a loved one lived in a state institution?
Take Action!

Legislators want YOUR story of how community works!

There are about 18,000 individuals with developmental disabilities who live in the community on the DD caseload, yet have no paid services to help them. There are about 970 people in five Residential Habilitation Centers (what we call our state institutions). In Washington State, 21% of the Developmental Disabilities budget is used to support 3% of the DD caseload in the RHCs.

Advocates who wish to keep all five of our RHCs open and continue to use them are writing compelling personal stories to legislators telling them that their loved ones can't possibly live in the community, that the RHCs are the only place for individuals with significant disabilities. We know this is not true. Many individuals with more significant medical needs and disabilities are living fulfilling lives in the community.

If you once lived in an RHC or have a loved one who did who now lives in the community we would like you to share your personal story. You can respond to this alert and share your life in the community with all legislators and the Governor. You can also choose to send it to various news outlets. Let them know why living in the community is better than when you or your loved one lived in the RHC. Let them know your challenges and how you work around them.

We would like you to also share your story with us. You can reply to this email with your story and we will compile them and personally share them with legislators and their staff.

If their numbers are true, even if they aren't, it is, indeed, disturbing to see people needing what is not available to them. What ARC does not understand or admit is that closing the RHCs will not liberate money for those people they refer to. It would only deprive displaced RHC residents of the care and services they require.

What are your thoughts on the matter?

Monday, February 8, 2010


That SSB-6780 will cost far more than legislators are being told comes as no surprise to those of us who remember the 2003-05 Fircrest closure attempt. For a downloadable Fact Sheet on the costs, click on "COSTS OF SSB-6780" in the link list on the left. Just scroll down a little. (If you received a cost fact sheet by email on Saturday, 2/6, you have it already, though this one is in PDF.) The page display is small, but above the post to the left, you can click on the magnifying glass icon to enlarge it for download. (The site is Flickr, which automatically adds ©. I could not eliminate it; so, Here are my exceptions: Downloading & reproduction is allowed for education distribution & to retain RHCs. Editing is permitted based on amendments or newly identified costs. If you modify it, please remove my name.)

Sunday, February 7, 2010

ActionDD Response to SSB-6780

As discussed in the previous post, the Senate Health & Long Term Care committee, last week, amended the RHC closure bill (SSB-6780) and passed it. Next stop: Senate Ways & Means Committee.

ActionDD ( advocates for a full continuum of care and services for people with developmental disabilities : residential habilitation center or one of the many "community" residential options supported by DSHS.) responded as follows:

Action DD response to SSB 6780 ActionDD asks that you do not support SSB 6780. Our concerns, voiced in the hearing in the Senate Health and Long Term Care committee, were not addressed. The bill still calls for RHC closures, not expanding the regionally located RHCs that we discussed in the hearing, which would be a much more cost effective solution to closure. Closing RHCs does not save money. Past experience with RHC downsizing has cost much more than anyone estimated and didn’t relieve the need for RHC care. Remember: RHCs care for the most afflicted of the DD community. We don’t think taxpayers would like to pay more for a system that is already working and that could be better utilized to provide more services and save the state even more money, plus bring in revenue. Building SOLA’s will not be a cost savings. You will still need to add in the cost of sheltered work shops, day programs, etc. There will be costs shifted to local community budgets, such as increased cost to local fire departments, police, Emergency rooms and hospitals. We need a guarantee of the same or better level of care. With the regionally located RHC network, we already have a guarantee of safe, comprehensive cost efficient care. Why replicate it? The people living in RHCs and their families/guardians are pleased with the services. There is an assumption that living in the “community” is a better way to live. Not everyone agrees with that assumption. There is warehousing in the community homes (this was mentioned in the recent articles on Adult Family Homes in the Seattle Times) many of these folks are isolated at home and are not a part of the community at all. The RHC clients are integrated into their local communities, have day and sheltered work programs and are treated with dignity and respect. State and Federal audits uphold a very high quality of care and over site. Citizens with developmental disabilities and their guardians have a right to choose to live in an RHC and this is protected by Federal law.

Maureen Durkan, President

Excellent points, simply stated. Recommendation: use them in making calls and sending emails to Senate Ways & Means Committee members! See blog, below, for committee members" phone numbers. Find phone #s & email addresses at link list on left. Keep the calls and emails flowing! It's important!

Friday, February 5, 2010

Call Senate Ways and Means Committee members: NO on SSB6780

This blog is long, but a quick read.

Below are some info & reasons for defeating SSB6780 and encouragement to call Senate Ways and Means Committee members. The names and numbers are at the bottom.

The RHC closure bill is still bad business. From a humane point of view, it repeals the legal rights of RHC residents to an adjudicated appeal process when a move planned by the State may not be based on their "best interests." SO, why would the State want to repeal the one law which protects the best interests of a person whose mentation makes it impossible to protect him/her self???? Could it be that the best interests of people with severe and profound developmental disabilities are secondary to some other agenda, such as closing the doors of the facilities that DO AND MUST SERVE their best interests?

The recent Times articles describe the State's quota system for moving nursing home residents into Adult Family Homes. They point out that even when it was clear that "the low hanging fruit" had been picked, & it would not serve the best interests of the nursing home residents to be moved to Adult Family Homes, DSHS required the moves! Incompetent care and abuse resulted! And, we learn that as a "cottage industry", oversight was intentionally lax. Some of us have long wondered why "community" care oversight for people with DD was so inadequate. Could their care fall into the same "cottage industry" category? Similarities don't stop there. In 2003, I read the phrase "low hanging fruit" in instructions to DSHS workers being trained to convince parents and guardians to move their loved ones from RHCs.

1. OUR STATE IS IN A BUDGET CRISIS. Even in an economic boom, replacing the RHC system of care with a community system of similar quality would be staggeringly expensive if it could even be accomplished! It is doubtful that it could. The proposed reorganization would require massive initial outlay to even establish the foundation for such a drastic endeavor. The current economic crisis notwithstanding, adequate funding could not be counted upon from the state when a year after having been removed from RHC care, residents' federal "roads to community living" funding all dried up. Legislators should not be fooled into thinking the state can wade in with a little bit of money to accomplish this change. The proposed changes would require very serious money from the outset to establish the necessary infrastructure and a serious commitment to future appropriations to sustain the level of care and services that would be required. They should know in advance exactly how complex and expensive it will be. Doing away with the RHCs before this poorly conceived experiment has proven a success would be a terrible mistake.



4. It will result in real harm to real people. The attrition by death rate of the 2003-5 forced/coerced moves from Fircrest was 10%: 6 out of 61 moves. What would it be for the entire remaining RHC population?

And what about the people who didn't die,who suffered interminably, instead. A few, whose guardian is an attorney, recovered substantial damages from the state and some returned to Fircrest. Others just suffered. So did their parents and loved ones.

5. Based on costs reported by LEAP for the 2003-5 Fircrest closure attempt, the State spent $10,000,000 to move 61 people and have 10% die. Based on those figures, it would cost $161,000,000 to move all RHC residents (in addition to many unplanned, therefore unknown, but expensive factors).

Why defeat SSB-6780?

SSB-6780 will not save money, will cost enormously, and

Real people will be harmed.

It would not result in a system of care and supports that serves the people.

Instead, it would repeal their legal protections that their best interests will be served.

People who now live in RHCs are there because they could not succeed in the "community." They either failed in the community or were failed by it.

Services can be provided to current community residents at far less cost than SSB-6780 by opening RHC based services to the community in all 4 RHC locations and establishing satellite clinics in areas where the RHCs are too far away.

Yesterday, the amended RHC closure bill, was passed out of Senate Human Services, and has gone to Senate Ways and Means. It is now called a Substitute Senate Bill: SSB6780.

Below is a list of phone numbers of all of the Ways and Means committee members. Please call all of them, today and tomorrow and until we hear that the bill is dead! Just keep calling. You can copy and paste the list onto a page on your desk top.

Also write: brief emails. If you have to make a choice, choose calling. When Legislative Aides get too busy, emails can go unopened.

You have a story which supports this truth. Distill it so you can tell it briefly along with some of the above, depending on how much time you are given. Then engage your phone. One person worried, "I am afraid that what I have to say is not significant enough." Realize that your voice adds to the cumulative voices and it does not in and of itself have to be totally persuasive. Just make the calls; you don't have to be a soloist; just be part of the choir. We will succeed together.

As they say: "Change is made by those who show up."

Saskia......See Ways and Means list below.

Committee Members

Prentice, Margarita (D) Chair
JAC 303
(360) 786-7616
Fraser, Karen (D) Vice Chair, Capital Budget Chair
LEG 404
(360) 786-7642
Tom, Rodney (D) Vice Chair, Operating Budget
JAC 220
(360) 786-7694
Zarelli, Joseph (R) *
INB 204
(360) 786-7634
Brandland, Dale (R)
INB 203
(360) 786-7682
Carrell, Mike (R)
INB 102
(360) 786-7654
Fairley, Darlene (D)
JAC 227
(360) 786-7662
Hewitt, Mike (R)
LEG 314
(360) 786-7630
Hobbs, Steve (D)
JAC 213
(360) 786-7686
Honeyford, Jim (R)
INB 107
(360) 786-7684
Keiser, Karen (D)
JAC 224
(360) 786-7664
Kline, Adam (D)
JAC 223
(360) 786-7688
Kohl-Welles, Jeanne (D)
JAC 219
(360) 786-7670
McDermott, Joe (D)
JAC 230
(360) 786-7667
Murray, Ed (D)
JAC 215
(360) 786-7628
Oemig, Eric (D)
LEG 416
(360) 786-7672
Parlette, Linda Evans (R)
LEG 316
(360) 786-7622
Pflug, Cheryl (R)
LEG 415
(360) 786-7608
Pridemore, Craig (D)
JAC 212
(360) 786-7696
Regala, Debbie (D)
JAC 233
(360) 786-7652
Rockefeller, Phil (D)
JAC 218
(360) 786-7644
Schoesler, Mark (R)
INB 110
(360) 786-7620
*Ranking Minority Member

Monday, February 1, 2010


SB6780 (See the 2 posts, below.) was introduced right before the 3 part Seattle TIMES expose on abuses of Seniors in adult family homes. The kind of abuses described in the first article mimic those suffered by my sister, Kathy, in a community facility before she came to Fircrest. Be sure to read the article, as its message also speaks to the potential for current RHC residents should they be forced to move to community homes. In fact, such abuses already could be happening in the isolation of poorly overseen homes for people with dd.

You can visit the 3 part TIMES article here: http://seattletimes.nwsource.com/html/seniorsforsale/2010939195_seniors31.html

The writer says: "DSHS is not able to answer such questions as: Which homes and how many didn't provide enough food? What homes had assaults on residents?" and "Kathy Leitch, a deputy director who oversees the DSHS Aging and Disability Services Administration, said a hiring freeze — the result of state budget cuts — has left fewer investigators to monitor more homes. Many licensing and training standards may be outdated, she said. There's this idea that it's a cottage industry, and that the state shouldn't be overly regulatory. Personally, I think that's a bit naive." This by the head of the same agency that is responsible for the monitoring of community homes for people with dd! Frightening. Many of us have long held that "community" standards and oversight needed to be strengthened. This article makes it into an imperative, infact, into an emergency.

So what do you think?
Saskia Davis

You Can Help Defeat SB6780

If passed, SB6780 would not help "community" residents with dd, it would not save money for the state and it would harm to RHC residents. (See post below)

You can help defeat it: Tell the committee members your concerns and ask them to vote against SB6780.

1. Make calls to your Senator and to each of the members of the Senate Health and Long Term Care committee: Keep trying until you get through!

Keiser, Karen (D) Chair................(360) 786-7664
Franklin, Rosa (D) Vice Chair.......(360) 786-7656
Pflug, Cheryl (R) *.........................(360) 786-7608
Becker, Randi (R) .........................(360) 786-7602
Fairley, Darlene (D).......................(360) 786-7662
Marr, Chris (D) .............................(360) 786-7610
Murray, Ed (D)..............................(360) 786-7628
Parlette, Linda Evans ...................(360) 786-7622

You can leave a message with the Leg. Hotline for your Senator:.......800 562 6000

2. Public Hearing: Wednesday, Feb 3, 8:00 AM. Room 4 John Cherberg Bldg.
This is a very important hearing, too important to miss if you can possibly make it.

New To The Process? It isn't hard and it can be fun. Here is what to do:
~Watch your email in case a pre-hearing meeting is planned.
~Arrive about 7:30 and wait for the sign-in sheets to be brought out.
~Sign in even if you don't plan to testify so your presence counts.
~As you can, coordinate with fellow RHC advocates
~If you plan to testify, check the appropriate box.
~Find a seat inside the hearing room.

~Testimony can be written or verbal or both.
-Content: Personal is Powerful. And, yes, make it relevant to the value of your loved one or friend's RHC experience and the losses s/he would suffer were they to be closed.

-Verbal, try to have it down so you can say it only looking occasionally at your notes. You may be cut off if you read all of it. Time it in advance to be wrapped up in 2 minutes. If that seems too long, know that you don't have to speak for the full 2 minutes.

-Written: Try to keep it to a page. Bring 14 extra copies for committee members and staff and a few others you may want to leave with legislators who support RHCs. Leave the 14 them at the staff table at the side of the room.

Think of your voice as part of a choir. The music wouldn't be complete without it



Senator Freiser, chair of the Washington State Senate Health and Long Term Care committee, has introduced a new bill that would close all 5 of the residential habilitation centers (RHCs) for people with developmental disabilities. The is bill is a travesty; it's passage would be tragic for people who need and thrive in RHCs. Sponsors are Senators Ranker, Kline, Delvin and Fairley. To read it , click on SB6780 in the website list on the left.

What Impact Would The Bill Have?
SB 6780 mandates development by DSHS of a plan for closing 5 RHCs within 5 years, but does not require the legislature to pass legislation for the plan to be implemented. Where are the checks and balances? Where is the oversight over DSHS?

It would require closure of Frances Haddon Morgan Center, first, within one year.

It would require replacement of centralized RHCs with State Operated Living Arrangements (Solas which are group homes operated by the State.)

It would disperse professional services throughout the "community"

It would destroy the RHC safety net for the "community" residents in crisis.
It would try to substitute 2 crisis teams, one on each side of the mountains.

It would repeal Froberg law, the one legal protection that RHC intermediate care residents have that their best interests will be served. Froberg requires that moves from RHCs be in the person's best interests and provides for an adjudicated hearing in the event that the Guardian disagrees that the proposed move qualifies. These protections would be undone.

It would remove from their familiar homes, environments and "families" people whose stability and behavioral adaptations depend on constancy of accustomed environments, routines and relationships.

It would remove from their familiar caregivers and professional teams people whose medical stability depends on those relationships.

Severe transfer trauma would surely be the result for many, as it was in 2003-5 when 6 people died following forced/coerced moves from Fircrest and others lived on in confused misery, some eventually to recover monetary damages from the state and move back to Fircrest.

It would destroy the centralization and economy of scale that combine to make this state's RHCs national models.

It would dismantle professional teams who work most effectively because of their synergistic interactions.

Centralization of professional services, work programs and active treatment allows people with extremely debilitating conditions to have a life. Spread everything out and limit staff in homes spread throughout the community and, suddenly, what was a challenging and delicately choreographed, but do-able schedule in an RHC becomes impossible, or if not impossible, far more expensive to achieve in the "community."

At a cost that far exceeds $161 million dollars, (based on costs of the 2003-5 Fircrest closure attempt,) this ideologically driven legislation would destroy the one excellently functional part of Wa. state's services delivery system to people with developmental disabilities.

If there is a silver lining to the current budget-deficit cloud, it is that legislators will have to ask where the money will come from. Another salient question is, "Exactly how much would fullfilment of the bill's requirements cost?" The $161 million does not begin to cover the list of unknown or undisclosed costs. If the State could spare even the minimum $32 million per year, just think: if it could be used, instead, for unserved, wait-listed people, how many could receive the services they need for that mountain of money! Or what an excellent "community" quality assurance system could be developed and implemented with it!

What have I missed and what do you think?

Let this not be a time of dis-empowerment due to worry. Instead, let it move us to rise up , finding strength, courage and hope, together, each to do our part for the ultimate good of all our loved ones with dd, residents of RHCs and "community" homes alike!
Saskia Davis