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!

Friday, October 28, 2011


Can Tommy's preventable death make a difference? The governor, DSHS and the Wa. legislature need to back up, stop the closures of RHCs! Basic safeguards, systems for prevention of such tragedies are sorely needed in Wa. State's system of "community" residential care. DSHS depends on reporting of incidents, not their prevention. By the time the reporting stage is reached, the person is already harmed! Read this article and look at the cost comparison charts! Not only do Washington's residential habilitation centers RHCs offer safety that our general community system of care for people with developmental disabilities does not match, but it does so at less cost to taxpayers.

This past week, a tragic death occurred. Tommy, a 30-year-old developmentally disabled man, died. Among his developmental disabilities Tommy had PICA, a condition in which a person ingests non-food items. As reported, Tommy’s life ended because he ingested laundry detergent which had been improperly...

Thursday, July 7, 2011


Triple Tribute to Robin Sims

“Resolve is what brings us back every year and what keeps us going as advocates day in and day out, even against the odds. If not us, who? Our resolve speaks to the immediacy of the need and our unending actions to meet our daily challenges.” This statement was part of Robin Sims' last VOR President’s Message. Robin had been VOR’s President since 2008 and “resolve” describes so well her every action on behalf of individuals with intellectual and developmental disabilities (ID/DD) and their families. "

I never met Robin, but reading about her in VOR'S letter and memorial tribute, I found myself at once, sad to have missed her and grateful for all that she had done on behalf of rights of and services for all people with DD/ID. Seeing and listening to her video tributes from VOR's website infused me with inspiration. I hope they do the same for you. The first is her brother's tribute to her and the second is one by New Jersey legislators.

Here, with permission of VOR, is an edited version of the longer letter which I found so inspiring.

"Robin served as VOR’s President since 2008 until about a few weeks before, when her health required that she resign. Her dedication to VOR was so strong she even participated in VOR’s Annual Conference and Initiative earlier in June. As the mother of two children with developmental disabilities, Robin brought to VOR a passion for our mission that is really only felt by families whose motivation is personal. Advocating and leading alongside mothers, fathers, sisters, brothers and other close relatives, she motivated others by example and reminded anyone who would listen: “If not us, who?”

Robin was not easily deterred in the face of injustice. From the Halls of Congress to living rooms as well as the Bloomfield Recreation Commission, the National Advocacy of Families, and also a seat on the N.J. Council of Developmental Disabilities, Robin’s advocacy meant the difference between desolation and salvation for countless individuals and their families. Perhaps Robin’s greatest gift to our advocacy movement is her legacy. She has left us with the wisdom, the energy, and the knowledge to know we can carry on - that we must carry on. Her legacy will not fill the hole in our hearts, but will sustain our advocacy on behalf of all people with ID/DD.

VOR represents a necessary voice: VOR is the only national advocacy organization for people with ID/DD that stands up for the right of individuals and their families to choose from a full array of service options to meet very diverse needs (www.vor.net). VOR respects choice and embraces the individual and family voices as primary.

Robin's brother, Geofff, wrote: .

"This evening our lovely Robin passed away. Ever the fighter she gave every last breath to helping others! I am such a better person for having her as my sister and our kids are so much better off today having her as their advocate." Geoff also produced the incredibly moving video at http://youtu.be/bcEInf2tKxI Is it Robyn's incredible , singing that can be heard throughout tthroughout the tribute? She had been a concert soloist and member of the NYC Opera Co.

Following Geoff's tribute to his sister, you can find just behind it a tribute to her by state legislators.

Robin's family has set up the “Robin Sims Memorial Fund” as way to keep Robin’s passion for advocacy on behalf of people with intellectual disabilities alive. They see a managed and ongoing fund as a way to sustain Robin's incredible dedication to advocacy on behalf of people with intellectual and developmental disabilities. The fund will assist VOR, her local organizations, and families in need. To contribute, make checks made payable to the “Robin Sims Memorial Fund”.
Send to:
Robin Sims Memorial Fund
356 Jarome St.
Brick, N.J. 08724

For more information and a beautiful photo of Robin, just click on the title of this post.
In gratitude,

Monday, July 4, 2011



It has taken me a while to digest some staggering information from 2 budget "conferences" led by DSHS last Thursday. The primary speakers were Susan Dreyfus, DSHS Secretary and Mr. Doug Porter, Assistant Secretary for DSHS Health and Recovery Service.

Mr. Porter explained that many of the cuts are in jeopardy due to legislated "start dates" that were too "optimistic" with "impractical timelines": so some legislation will need to be revisited, next year.

New DDD (Division of Developmental Disabilities) " Investments"
The DDD will invest $10,000,000 in "community services." to provide Quality Assurance for Adult Family Homes, , it will invest an additional $1,500,000 for Vulnerable adults. Friends who are case workers tell me that the first residential placement they are supposed to try for a person with ID/DD is an Adult Family Home. Hopefully, the $1.5 million Quality Assurance Program that is developed will prevent the kinds of tragedies that were cited in the Times series that detailed horrendous abuse and neglect after DSHS had moved people from nursing homes to Adult Family Homes. http://seattletimes.nwsource.com/html/seniorsforsale/ , http://www.youtube.com/watch?v=w2fGpw6oQ64 Seniors For Sale: Dotti and DSHS.

"Community" Services: DDD & Other Reductions .
Personal Care Hours are reduced.
Mandatory caregiver training is deferred.
The employment and Day Services programs are modified, requiring, in some cases a change of waiver status.
Disability Lifeline Program funding is drastically cut.
State Food Assistance is cut.
Reduction in Mental Health Funding (RSN)
Reduction in Chemical Dependency Services
Staff funding & operating costs reduced at State Hospitals.
Management & Administrative funding is reduced: (Ms Dreyfus states this includes Oversight and Quality Assurance)
Medical cuts are drastic, including the closure of some Rural Health Centers, cuts in outpatient visits, non emergency emergency department cuts, & "Healthy Options FQHCs, antidepressants, wheelchair limitations, OT, PT, ST limited variably depending on origin of need. No glasses, hearing aids. Adult dental is available to Home and Community Based Waiver clients only. To learn more: dshs.wa.gov . Click on : "DSHS legislative highlights"

The Department is increasing the TAKE CHARGE PROGRAM, but taking eligibility down from 350% to 250% of the federal poverty level. (I am not familiar with this program, but am reporting what I heard in case readers who need the service understand it.)

Medicaid purchasing is moving to the Healthcare Authority. Little explanation was given for this "efficiency." It was stated that "not all things funded by medicaid are moving to the Authority." Confused yet? Me too.

Ms. Dreyfus praised the Department's tracking system which she says can track across departments and programs! She stated that DDD is required to make 4 assessments in the year following a move by "Money Follows The Person" clients. She seemed utterly unaware that the Department is drastically behind in their assessments and had stated as much in their Decision Package that was provided to the legislature. My sincere question is: if there is in place such a wonderful tracking system which can track across programs and departments, why is it like pulling hens teeth to get ALL of the "community" costs for any given client or any group of like clients?

Ms Dreyfus sounded proud and happy to have closed Frances Haddon Morgan Center, and frozen admissions at Yakima Valley School, saying that we still need "rehabilitation" centers (the centers are "habilitation" centers because the skills being taught are for the most part new to the clients; it is not a recovery process, but, evidently, Ms Dreyfus does not know this or may simply have trouble with language.) She went on to say we simply need fewer "rehabilitation centers" and they should only be for the hardest people to serve.

Challenges To Be Met

It continues to concern and perplex me that Ms Dreyfus, the governor and the legislature all ignored the very clear language in ADA/Olmstead that gives clients who qualify for ICF/MR level service CHOICE between "community" and "institutional" residence. According to this law, which HAS been tested and DID PREVAIL in Florida, the client must be admitted within a reasonable amount of time and may elect to make the institution their home. It does not matter what age they are or if they are "the hardest people to serve" or not, or , according to a letter written by CMS to DSHS, whether the legislature has appropriated enough money or will have to appropriate more via supplemental budget. Ms. Dreyfus, of course, did not approach this subject.

I would like to hear your thoughts concerning the possibility of using RHCs instead of home and community based waivers when budgets are cut below levels supportive of meeting the needs of the client and his family. If this would not be a good idea, I am eager to hear why, not ideology, but real concerns and fears. If you think it would be a good idea, I would like to hear why it would. Again, not generalizations, but thoughtful information that might be helpful to folks who soon may be faced with such difficult choices.

Real World Fallout From the Budget Cuts
Toward the end of the second conference, one such person, a mother, challenged Ms. Dreyfus, asking if the state would accept responsibility if, after having cut her hours of service, she had to get another job and her son got hit by a car while wandering in the street looking for her or if he burned the house down while she was at work. She explained she was worried about this because she does not have the money to pay a caregiver so she can leave him attended while she is at work. After she had repeated her fear about 3 times, Ms Dreyfus directed her to speak with a particular person to see what could be worked out for her.

A caregiver explained that the needs of her severely affected patient had increased and she had tried numerous times to procure something that was required due to his worsened condition, but finally, her job had been threatened because she was so persistent. She, too, was directed to talk with a specific person.

After these two complainants, another provider spoke on behalf of families and providers who "don't know how to work the system", saying that children's services in DDD were "hardly accessible."

RHC Parents and Guardians: Be Thankful
Yes, there have been cuts to RHC amenities and the loss of the RHC infirmaries was a loss to "community" residents as well as RHC residents; but Federal requirements are strict and protect RHC residents with regard to health, safety, jobs, recreational activities, behavior management and learning as foundation for independence when appropriate to the resident's capacity. Most of us can go to sleep at night trusting our loved ones are safe and appropriately cared for in our absence. And we also know that we are welcomed and respected as authoritative members of their professional teams with as much participation as we desire and can do.

One of my long standing fears about community placement for my sister has been that when a problem might arise, as they inevitably do, logic, creativity and the fact of her need would not be sufficient to overcome the roadblock of insufficient funding. When problems arise, it is, of course, a bother, but the good news is that there is always some place to go, some way to resolve differences to the benefit of our RHC resident.

I am looking and listening for ways to encourage DSHS to bring the "community" Quality Assurance performance up to the standards to which RHCs are held without diminishing the RHCs.

From my own review of numbers and letters to CMS, I know that Cheryl Felak's comments regarding "no paid services" in the DDD system ( http:/ddexchange.blogspot.com/2011/07/progress-or-pie-in-sky.htmlcomments ) are correct, but, even for those people who currently don't need DDD services there will come a day when most of them will.. Whatever their choice, then, if they qualify for institutional and HBCS services, we want them to be secure, and safe with all of their needs met. Getting from" here", where, generally speaking, that is only true of people using RHC services, to "there." where "community " dd services in truth will be offer the same high quality of care with adequate supervision, requirements for programs, healthcare, therapies, & audits with adequate funding is our collective challenge. Only when it has been met will the focus be right: that is, "Considering all of his or her needs, which on the spectrum of choices is the most supportive environment for the client and his/her family?"

Let's have your ideas and the ideas of your friends. Network these considerations,
please, and invite them to the blog. Collectively, we are exponentially more creative than the sum of us together. (Synergy)

Thank You,

Sunday, July 3, 2011

Progress or Pie in the Sky?

The governor has signed 5459 into law. As noted previously, it is a very flawed law. As I have been assessing the process by which this happened, I keep running into information which makes me question it, question the legitimacy of the process. I wish I were an attorney with such information at my disposal. I have so many questions!

Truly, there is no economic benefit to society, nor any to displaced RHC residents, to closing any RHCs, only benefits to vendors. That is the most generous assessment I have been able to make. Speaking with legislators who were lobbied by people who, themselves, are affected by intellectual disabilities, I am learning that some brought photos to show the legislators, photos of homes which they said had been bought for them by the state, homes that were fancier than those in which the some of the legislators, themselves live. One related that one of the self-lobbying group with id/dd had expressed such appreciation for her caregivers, salaries of $1,000,000 were being suggested.

These people are innocents; and so are the parents and guardians who buy into the promises made to them that their loved ones will live happy, near normal lives "in the community" if they only will leave the RHC or not insist on being admitted to one. Pie in the Sky! Many, instead, are truly stranded once they have left the safety of the RHC. Many others are stranded having been "diverted" from admission to an RHC. See the welcome article that tells the story of Thomas Felak by Cheryl Felak for her new list serve, meant to bring parents and guardians together, much as this blog is meant to do. Just click on this article's title.

I remember the days when our family thought my sister would one day lead a normal life. It was a hard goal to give up, but really, she would not have benefited if we had pushed her to "be normal," when she couldn't be. Yet, when we supported her just where she was in her own process , loving her unconditionally, she was able to continue making progress relative to her own potential, and be happy in that. Isn't that what underlies our dreams for our loved ones, that they be happy being who and however they are?

Aside from the personal, the broken hearts that accompany the broken promises and broken dreams, there is a societal consideration that should not be ignored.

Lets just suppose that the state could buy those fancy houses for people to live in the community plus staff them for their 24-7 care needs. How far would the money go? How many others would be deprived of services because all the money would be used up for the privileged few who got the fancy houses and primo services that these innocents think is due everyone? Compared to the numbers who can receive services when they are shared in RHCs, the numbers would be very small, indeed.

This is not to say that everyone who lives in an RHC does so because it is a way to stretch tax dollars, nor is it to say that everyone with id/dd should live in such a protective, inclusive community as an RHC, but RHC communities, by law, must & do provide excellent services , everything needed by their high acuity residents. They do have their place on the vast disability spectrum of needed services.

Thursday, June 23, 2011


"When the Japanese mend broken objects they aggrandize the damage by filling the cracks with gold, because they believe that when something's suffered damage and has a history it becomes more beautiful.
- Barbara Bloom
After the intensity of the campaign we have been waging to defend the RHC homes of our loved ones this uplifting thought comes by way of my friend, Marie Dudek.

imagine a world where each and every human being
is fully aware of the difference they make in the universe...

Wednesday, June 22, 2011


Having spent the afternoon in consultation with old colleagues in our efforts to retain the best possible services for the greatest number of people with dd, I have come away with the desire to educate and communicate, even if it is one-way. I still hope that readers of the Developmental Disabilities Exchange will want to respond and make it a dialogue, with each other as well as with me, but until that happens, I will blog what I feel the need to communicate.

One person with whom I spoke, today, had a number of horror stories, tragedies, really, that have motivated her to work to preserve RHCs. She spoke of people with dd living in the general community who are being preyed upon for their meager food allowances, and for their bodies, or to get them to perpetrate crimes. These were eye-openers to me. I asked her if she could put them in a form to be published to educate legislators & the public. Due to her sources, it did not seem promising.

However, I was reminded of this summary which I recently wrote to a legislator who had adopted the reasoning too often cited by DSHS, ARC, the DDC and DRW: that there is a national trend to close institutions; and Washington state is behind the trend.

Rather than attack or embarrass him, I will allow him anonymity unless he chooses to contact readers via this blog. He wrote:

"Thank you for contacting me about 2SSB 5459, a bill that is titled “regarding services for people with developmental disabilities”, and was aimed at reducing the number of people in Residential Habilitation Centers as trends for providing services to persons with developmental disabilities have increasingly focused on doing so in community settings."

The following is my edited response.:
Senator, "You have been misinformed as to the "trends." Most states retain their state-run facilities. I believe the number is 39. Some others have found the experiment to eliminate them was a mistake and are working to rebuild them.

Because Fairview of Oregon was being considered as a model for closure of Washington's institutions, I interviewed all the parents and guardians that I could find whose children or wards had been moved from Fairview. The best review the closure got was by a mother who said her child had more choices now, but little interest in any of them. That was the best.

Others reported the following: Sexual abuse in an all male group home to which the abused female resident had been transported. (This cost the state quite an extensive settlement); a young man found by another parent who was checking on him due to infirmity of his mother; he was found sitting, filthy in his dark, dirty apartment with no food; the friend effected a transfer to a supervised situation, but had she not made the trip from her home in another town, who would have intervened? No one. Parents who had been promised circumstances by the state that had not been honored: broken promises such as: No opposite-sex housemates. No more than 2 housemates. No known violent or abusive residents in the same home with a wheelchair-bound, defenseless resident. Another mother said that before the Fairview closure her son with cerebral palsy had a life: he walked and went to work, recreational activities and church. After he was moved because Fairview closed, he was not taken out very often and when out, not taken out of the car. No activities were required of him. Due to inactivity, he lost his walking skills and, then, deteriorated from there until he died. This mother was very distraught, having tried repeatedly to motivate the caregivers to engage him in activities. A different woman told of having been on the waiting list for the promised services that the Fairview closure was supposed to provide. (The same claims made for closing RHCs in Washington). Her child, age 16, is deaf, mute, blind, with severe cerebral palsy and "mental retardation" + recent scoliosis. After 16 years on the waiting list for services, just this year, she finally has been granted a few hours a week of help. Still another mother said they put her child on a medication that caused him to be violent. After he struck her in the face during a visit, she tried repeatedly to get the medication changed, but the caregivers insisted it was needed; and the doctor would not return her calls. A father told of an ongoing fight for his previously abused daughter to have only female caregivers. A man who used to write about how things were going in the community for former Fairview residents felt unable to share what he knew because he said, now, the parents and guardians are too afraid to report or draw attention to the abuses, afraid of retaliation against their children, afraid they will be discharged from where they live and then there will be no place for them. (That situation is not unknown in Washington, already.)

I hope, Senator, that in the future, when you hear about "trends", you remember these examples.

I read the DDD budget decision package very carefully. It was filled with red flags, reasons for the legislature to stop and examine the proposals, to find them full of hope, but short on practical substance. It was also very revealing about dangerous shortcomings of the existing quality assurance program for "community" residents for which DSHS is responsible.

Passage of this bill is perhaps the biggest mistake I have ever seen made by the legislature. What was proposed is not workable and risks lives as well as physical and emotional health. You and your colleagues have simply begun a process that will hurt people without doing the good that you thought it would. I hope you will be diligent in following it, following the people who are being sacrificed for it, both in the near and distant future; and when you find harm that you have done, I hope you will have the integrity necessary to join in effecting the remedies, if , by then , it is not too late!

Not surprisingly, I have received no reply.
What do you think?

Monday, May 30, 2011



Washington State's Residential Habilitation Centers (campus-based communities with comfortably adapted homes) provide centralized services to people with developmental disabilities/intellectual disabilities. For the most part, their residents are people whose needs for care and close attention are high and who have severely limited abilities to function independently. 24-7 care, nursing, dietary, a full range of therapies + medical, dental, recreation, work programs and school (public or on-campus) are provided as called for in the person's care plan.

Regular, federal audits by high standards, tied to federal matching funds, & close supervision of well-trained staff results in high quality care and programs with low staff turnover (continuity of care and relationships).

Planned respite for families caring for their loved ones at home as well as very successful crisis intervention and stabilization for general community residents (safety net) are also functions of RHCs. It is not unusual for people entering RHCs under those circumstances to request to stay on permanently. DSHS strongly discourages this, but legally, as I understand it, the choice belongs to the resident, not the state.

"Supported living" programs in the general community also are supposed to provide what the individual's plan calls for. Such services are "a la carte," generally accessed from private, for profit or non-profit business providers. Reportedly, this works out very well for some and less so for others.

If, as doubtless she will, the Governor signs into law 5459, it is possible that the number of RHC beds will begin to shrink. As I understand it, that is the plan. Partially, the rationale that has been given is that parents and guardians prefer community-based services. We know that many do, especially those whose childrens' deficits are supportable with the resources provided in the schools and medical facilities such as Children's Hospital & Universities. From time to time, though, we hear from parents/guardians whose children are outgrowing the families' abilities to meet their needs. They tell us that they have not been able to access acceptable resources, and when they have asked about RHCs, they have been told there were no beds. In some cases, we hear that they have been redirected to community living situations or left with nothing. We also hear from caseworkers that they have been directed by their superiors to steer people away from the RHC option.

To the extent that such clients of DSHS have been qualified for RHC level services ("on waiver") and have been diverted, this is a violation of both the ADA/Olmstead and Medicaid law. Anyone who has obtained paid services from a private residential business or SOLA (state operated living arrangement) qualifies for RHC level services. And some who have not obtained those services may still qualify.

If you are a person looking for resources and have not found them forthcoming from DDD or if you finally did receive the needed services but had to fight for it, it would be helpful to hear from you about your experience.

You can write to me privately at ddexchanges@gmail.com. Such mail will be strictly private. Please include a name. You may use a pseudonym if you are more comfortable, but know that I will not be sharing whatever name you use without your written permission. At this point, I am just trying to get an idea of the size and nature of the problem.

If you choose to blog, here, about your experience, others may also relate and we may find there is more participation as others see their experience shared. Either approach would be welcome.

Also, please spread the word. We must support each other in accessing and keeping open services that are supposed to be available by law.

Friday, May 27, 2011

2-ssb 5459

Previous readers of this blog, as well as many advocates, active throughout this campaign, are familiar with Cheryl Felak, RN and mom to a young man with multiple, severe developmental disabilities. CHERYL has been tireless in her research to oppose 5459 and it's damaging consequences . While I await her reprint permission, I am publishing my own response (with minor updating edits) to a legislator who tried to discredit one of her factual presentations.

(In addition to closing Frances Haddon Morgan Center and freezing permanent admissions in Yakima Valley School), as if it were legal at the Federal level, the bill (5459) gives authority to the (DSHS) Secretary (hired after her success in privatizing the Wisconsin children's administration) to summarily decide that RHC residents can be moved. An appeal process is allowed, during which the move may not be made, but in reality, the Secretary could move people out, one by one, until the RHCs were so empty that their cost effectiveness really could not be defended. Then, taking it to the legislature to close them would be a virtual piece of cake. Just like this bill takes FHMC and YVS out of permanent statute, the others could be taken out as they were determined to no longer be cost effective.

2. As if it were a reasonable thing to do, a task force is created to decide the fate of the remaining RHCs, including YVS. Why is this unreasonable? It is because DSHS & other RHC opponents hold All the cards.

The last task force that was created for a similar purpose, though, ostensibly, with broader mandate" (to suggest a design for the whole DDD system that would best serve the needs of the state's range of folks with dd) was purposely loaded with people who could be expected to promote RHC closures. I interviewed & recommended several candidates who would have supported keeping them open even though they fit categories other than RHC advocates. NONE OF THEM WERE CHOSEN. The resulting "table" was populated by RHC opponents with the exception of the required ONE RHC rep, whose child did not even live in an RHC, but who did use them for respite and a union rep who worked at an RHC. At that time, either the Director of Aging and Adult Services or DDD, Director, (I can't remember which) asked in disgust: "When are we going to be allowed to close an RHC? Also, a memo was circulated saying the official mandate (described above) was "code for closing RHCs".

Adding insult to injury, as a starting place for considerations, as though they were credible, the staff trotted out a number of studies that already had been discredited for their bias and poor design. One of the studies had been discredited on formal peer review and, in fact, when that had been made public, DSHS had temporarily pulled it from their website; only later in time for the task force, was it replaced to their website.

RHC proponents were promised there would be open forum for comments. When we took advantage of it to point out the inaccuracies of the presentations, the opportunities to speak were cut back from time before lunch + time before the end of the session to only time at the end. Then, again, that was shortened. We were promised that written comments would be accepted and all comments, written and verbal would be published on line, but when they saw how much there was and how detailed and accurate it was, it stopped being published. We were promised that a summary would be published, but it was not. We were promised access to the person responsible. She disappeared and I found it impossible to track her down. Later I learned that she is the wife of a person of prominence in a group who opposes RHCs.

Perhaps because RHC proponents took every speaking opportunity to point out that no decisions could be made until a thorough study of the needs (claimed then , as now, to have been only partially assessed), existing and missing resources, including costs, statewide, could be made, we finally did get one concession (I think by accident) from a House staffer who reported that there was no significant difference in cost between RHC and community delivery of the same services. While this was still wrong because many community services were still not included, it was an improvement over what was being touted before that.

The end result of the meetings was that the Governor was given credit/blame for refusing to extend the time for the task force to meet, so no conclusions were officially drawn. "Impass" was cited as the reason.

By the way, most of the delegates except for our one RHC volunteer and a couple of union reps, paid by their unions, all were paid employees of the state or of organizations which receive tax money for their work & so were there at taxpayer's expense; and we were meeting in one of the pricier hotels with lunch provided only to the official task force and visiting dignitaries. Those of us who were shut out from the process were left to pay the high restaurant prices.

What I have just described is what I would expect from the task force that is stipulated in 5459. But it could even be worse, if that is possible, in that the 5459 stipulated task force composition is worse than the one I have just described.

Furthermore, another bogus study has been added and will probably be treated as credible: Davis-Deshaies, which produced a biased survey & questions, did not even notify RHC support groups when their survey was available. Then, when we found out about it, it went off line for a while "due to server problems," and, again, our groups were not notified when it went back up. When we finally could get into it, we found that the biased questions led us to conclusions to which we objected and there was no way to finish & submit the survey without answering those questions with the limited, biased multiple choices provided. So basically, choices of RHC supporters were: say we supported something that we did not or not be counted at all!

Not to worry: the study actually did fulfill the legislative mandate because the mandate handily had stipulated the study's outcome: close RHCs, not whether to do &/or why. (Our tax dollars at work) If 5459 passes, (It did) we can expect the Davis-Deschaies study to figure prominently in the task force orientation materials. Assigning the fate of the RHCs to such a group is a SHAM designed to satisfy the appearance of democracy. But as Sara Palin has pointed out, a pig is still a pig even if you put lipstick on it.

Now to the illegal parts of the bill:
1. ADA/Olmstead provides for CHOICE by the client (assuming ICF/MR qualification) between "institution" (In Washington, this is an RHC) or "community" ( in Washington, any venue not an RHC)

2. 5459 both restricts RHC admissions of minors to temporary and converts the CHOICE by the client to "authority" of the Secretary. This violates ADA/Olmstead, which provides the CHOICE of RHC or Institution to all individuals, not just adults.

3. There are other areas in which DSHS had clearly jumped the legal gun.
They already were working on families to cause them to move out on the premis that FHMC and possibly YVS would be closing, not having waited for the decision of the legislature.
They already had held "family mentoring" meetings for which no budget had been passed (and should not have been.)

4. DSHS say they have nearly 14,000 people on their unpaid services roles. In one place, they refer to them as qualified but they also say that they assess those of them who request it, based upon staff availability, but admit in their budget Decision Package that they are far behind on the assessments. DSHS is in violation of medicaid law if it has any ICF/MR residents waiting longer than a "reasonable time", (generally accepted as 90 days,) for that level of services. And it must assess 100% of it's clients. Those clients who are in need of and qualify for ICF/MR services, by definition, are not known by DSHS because not all have been assessed. Here, violations abound. That said, by deduction and questioning on the part of Senator Chase, it has been established that the 14000 do not qualify for reasons of "too high" family income, or receipt of substitute services from other agencies. Either way, there is some underhanded funny business that has adversely affected the ability of legislators to base decisions on facts.

CMS funding depends upon compliance with Medicaid law.
DSHS has failed 3 times to comply with Medicaid laws with respect to quality assurance rules. Their Decision Package requested an appropriation to develop a program to bring them into compliance. However, until it has been developed and implemented, it will not make community residents any safer. Compounding this problem is the fact that they are, by their own written admission FAR BEHIND on client assessments, which other than complaints, seems to be their only means by which to tell if their are any problems.

By replacing the requirement that qualifying clients be advised of and provided with actual choice for admission to an RHC with authority of the Secretary to have them moved out of RHCs, 2-ssb 5459 places Wa. State DSHS at risk for losing it's federal waiver funds for HCBS (Home & Community Based Services) and RCL (Roads to Community Living) funds. Failing to comply with Medicaid law places them at this risk. That would mean losing 5o% of the community funding for the coming bienniem.

1. By their own admission, complaints form the basis for DSHS QA. DSHS is behind on these investigations.
2 Complaints are a poor second as a basis for a quality assurance program. They lack the component of prevention. To depend on complaints, even if there were enough investigators, is to accept that clients must be injured first. Instead, there should be a policy that requires consistent rules for quality assurance with unannounced, frequent visits, but there is not even an appropriations request for this.

Before undoing a safe, well regulated, efficient, cost effective RHC system of homes and services to the state's highest acuity and therefore most vulnerble residents, the community system should have been made safe and the funding should have been assured. This is only common sense. (It should have been, but obviously, common sense was in short supply by those who had time and inclination to read the bill for themselves.)

Senator Maralyn Chase eloquently made the above case before being ignored for 5459's passage. To watch and hear her on TVW click on the title of this post. You will find several videos. Look for the one Senate Floor version that lists 5459. Once it has started, forward to appoximately 1:14 for Senator Chase's speech. It is followed, shortly by a very supportive, shorter speech by Senator Roach. The both deserve kudos and applause for their heroic efforts in the face of a Senate that seemed already to have made up its collective mind. If, perchance it makes you angry, an immediate, politely worded letter to Governor Gregoire would be timely and well placed. If the speeches by Sens Chase and Roach make you grateful, letters filled with kudos would be equally well timed and well placed!


When I started this blog, it was with the intention of establishing a forum for peace, and mutual understanding and support among parents, guardians and people with developmental disabilities.
However, our Wa. legislative session that just ended, yesterday, has proven to me that there must be some very uncomfortable truth telling before we ever will get to the lofty point that originally I envisioned. The air is thick with dirty residue due to false representations made to legislators and people who need or use services, alike. It needs to be cleared.

Please write your thoughts, reference websites and other material and help inform everyone of what you know and consider important. It might not be pretty, but lets keep it civil, please.

Contact me if you wish to have a guest editorial.


2-SSB 5459
The 2011 legislative session is officially over, but the Governor has not signed the budget, nor all of the legislation.

2-SSB 5459 passed. It does much more damage than it's closure of Frances Haddon Morgan Center and the freezing of admissions at Yakima Valley School (Both residential habilitation centers (RHCs) and "institutions" by Federal standards) See my next post for a breakdown..

In large part, passage resulted from misinformation that was sold to legislislators as truth, but also in part because of what I consider to be gaming on the part of it's prime sponsor, Senator Adam Kline. From the point of view of slimey politics, his move was brilliant, but from the point of view of democracy by the people for the people, it was just slimey politics.

Originally, when the bill was introduced during the first part of the session, there was a huge onslaught of fact-based objection to it. The response of the sponsors was to remove most of the most objectionable parts and then return it to be passed onto the next committee, where it sat through the entire session+far into the extended session with no further hearing. Within the last few days of the extended session, it was resurrected. With only 20 minutes notice, a public hearing was called & language, similar to the original language, was passed as amendment. A visit to TVW archives will show you that committee members had little more notice of the amendments than the public, but with inaccurate portrayal by the sponsorship and staff, it was passed out of the Senate to the House where it was amended slightly, but due to continued misrepresentation, it again was passed. The amendment caused it to be returned to the Senate where it was again passed. If this is democracy, what is trickery?

Even if this bill had been one I could support, I would still be mightily upset at the manner in which democracy was abused by this Senator and his supporting cast. I hope his constituents will remember his brand of politics when next at the voting booth. Perhaps by then, they will have found someone more democratically inclined.

Saturday, February 19, 2011

Because We Care - Beyond Inclusion


The scenario below is true. The client was 14 at the time. He has a rare genetic syndrome which causes a global developmental delay, early onset pediatric dementia (his brain is shrinking), behavior problems coupled with manic and psychotic episodes. This was after his 5th hospital admission in 1 - 1/2 years.

He was on a Home and Community Based Service Waiver at the time.

12/2008 - Admitted to Seattle Children’s - 2 week admission (4th Admission for this child to Inpatient Psychiatric Unit)

12/2008 - readmit (5th Admission) - Psychiatrist recommended out-of-home placement for safety and health of child and his family. RSN stated “would not approve” readmission again

1/2009 - DDD Region 4 Children’s Manager told client’s DDD caseworker - “Do not offer them anything”

1/2009 - Discharge meeting at Seattle Children’s, DDD Psychologist, DDD caseworker, MD, Teacher, Nurse and discharge planner present. No availability in DDD residential system. Mental Health Residential placement would not be appropriate for him.

When asked about next crisis due to readmission being denied, only solution offered to parents by this group was to


It got worse before it got better:

He now lives at Fircrest, an RHC, he’s safe, happy, well cared for and healthy – a CHOICE that was denied to him for over a year.

Why does DDD want to deny a safe and healthy life to those they are supposed to help?

Monday, January 24, 2011


Celebrate with Forrest and his family.
Celebrate his opening through art and his art opening! Photography, really.
Autism claimed his voice.
Voiceless, he acted out.
Reader board, camera, loving, patient, and persistent parents and Fircrest School have helped set his voice free!

Forrest's photography show has been so successful that he has already sold 16 photos!

Now through Feb 10, Forrest's photos can be seen in person at Childhoods End Gallery in Olympia Washington.

Watch the news broadcasts and see his photos. See if they make your heart happy! They do mine!
For the KOMO broadcast, click on the title of this post. For the King 5 broadcast, click here: http://www.king5.com/news/local/Photographer-with-autism-sees-world-through-the-lens-114399899.html

Sunday, January 16, 2011



In these lean times of budget crisis and harmful cuts I do not understand why anyone would even consider closing the RHCs. Ideological differences aside, just based on economics, this decision would be a BUDGET DISASTER!

•Yes, these high needs residents are more expensive to care for: no matter where they live they will be more expensive – moving them will only INCREASE their cost of care.

•Economy of scale – it is much more cost effective to care for these residents in the RHC - this is ECONOMY OF SCALE – think of a family who experiences a divorce. The living costs increase when they go from 1 household to 2 households.

•Reduction in services – Not only will the cost of care increase but there will be a drastic reduction in services with the moves that are being suggested.

•Cost shifting – maybe one budget would look better but the cost will still be there, actually increased due to not using the ECONOMY OF SCALE model.

•911 calls are 4-6 times higher in "community" group homes than at an RHC
•increased catastrophic care – increased medical expenses

The moves that are being suggested are immoral. I see a disaster waiting to happen and this process needs to be stopped and studies completed prior to these decisions being made and acted on. If RHCS are closed there is no going back – there is no other safety net and the providers will find that they are neither equipped nor capable of caring for these residents in a safe, healthy and humane manner.

Please do not consider the RHC closures as a cost-saving measure. It is exactly the opposite.

Cheryl Felak, RN
Disability Advocate

Monday, January 10, 2011


Here is a resource for Wa. State residents who are disabled. It is an excerpt from the Washington Access Fund Newsletter.

Access Fund News
January, 2011

Medicaid Program Cuts - How the Access Fund can Help

The WA State Medicaid program began notifying clients in December of a revised list of 2011 program cuts. Some immediate cuts (effective January 1st, 2011) include adult eyeglasses and contacts, adult hearing aids and adult dental services (except for emergency treatments) as well as school-based services such as occupational, speech and physical therapy for special education students. 

The announcement states that 2,400 clients will be affected by the loss in coverage for adult hearing (at a savings of $300,000) and 67,000 clients will be impacted by the loss of coverage for adult vision (at a savings of $500,000). Governor Gregoire proposes to restore the cuts in the next biennial budget starting in July contingent upon legislative approval. 

We've heard via the grapevine that some DSHS clients have already had their audiology appointments cancelled because they have no way to pay for the hearing aids or related services. In response, the Access Fund has modified its loan polices to allow "pre-approvals" for hearing aid loans. This means that customers can apply for a loan prior to making an appointment with their audiologist. If approved, the customer can let the audiologist know that they have funding to cover the cost of both the appointment and the hearing aids up to the approval amount. If arranged in advance, the appointment can be paid for prior to or at the time of service. If hearing aids are prescribed, the customer would submit the prescription and invoice to the Access Fund. Once all of the loan documents are signed, the Fund will pay the vendor. The approval amount will depend upon the customer's budget. 

Pre-approvals are available for any potential customer - not just Medicaid clients. We realize that hearing aids can be expensive and many DSHS clients may not be able to afford to repay a large loan. In that situation, customers may want to contact Leann in our office to learn more about the Access Fund's Matched Savings Accounts. Other hearing aid funding sources are listed on our website at: Funding Resources for Hearing. 

Access Fund loans cannot be used for eye glasses or regular dental care but we do cover dentures and, of course, many other types of assistive technology. The interest rate is 5% and loan terms of up to five years are available. 

To read the announcement and for more updated information, please visit the WA State DSHS website. (The Access Fund website can be accessed by clicking on the title of this post.)

Sunday, January 9, 2011

Tom Anderson of Shoreline Wa. Is Missing.

Anyone who has information on Anderson's whereabouts is asked to call 206-371-1048, 206-387-0571 or 911.
seattletimes.nwsource.com Click to read the full Times article with description of Tom, .)
Tom Anderson, 62, was last seen at approximately 5:30 p.m. on Dec. 27 at his home near North 160th Street and Evanston Avenue North, said Brenda Burns, who works for Ambitions, which provides services to disabled adults in King County. ( Click title of this post to read the full Times article with description of Tom .)
Thank you to Cheryl Felak for having posted this on Facebook.

Friday, January 7, 2011


No doubt, you already are acquainted with the recently reported sexual assaults on defenseless people with developmental disabilities living in Los Angeles. (Click the title of this blog to read the CNN report.) Over 100 hours of video taped sexual assaults were made available, anonymously, to authorities. How does this happen? Who protects defenseless residents?

I would be interested in hearing from people whose loved ones are cared for in residential venues in the general community how they find the oversight of them. Is it adequate? In the RHCs of Washington State, abuse is not impossible, but it is unlikely and, if perpetrated, it is likely to be caught and stopped quickly, due both to reporting requirements and reporting practices that protect the identity of reporters.

Who is there to catch and report such abuses in private, semi-isolated residences? Especially in situations where there are only one or two caregivers for several residents per shift? What safeguards are there to assure that such abuses don't get hidden for fear of making the facility look bad? In Washington, abuses that are reported are investigated, but the quality control system for general community residences for people with dd that should be protective of residents, in fact, depends on reports. This means the abuse must already have occurred!

A recent law requiring background checks for caregivers is a step in the right direction, but "community" caregivers' wages can be very low, meaning that young people, barely out of high school, may be the only people able to take such work. When this is the case, the records of young offenders will have been wiped clean.

Issues of safety and quality assurance are major problems that would have to be solved before I would ever be able to consider moving Kathy, my sister, from an RHC.

What is your experience &/or perspective?


I have been silent on this blog for some months in large part because I have been struggling with an internal conflict: Lofty Ideal vs Reality. My desire and belief that we, as advocates for people with developmental disabilities should be able to come together and, taking into account our differences, work out mutually agreeable systems for providing the best supports for all concerned vs the reality that some organizations, biased bureaucrats and elected officials are dedicated to closure of state-run campus communities for people with dd so that they are not available even to those who need and want them. Often they cite horrific conditions of such facilities in days long bygone, but usually they claim that too much money is spent on people in residential habilitation centers (RHCs) . What I hear, listening to them is that they don't think the people who need the services in the RHCs are as needful or deserving as those higher level functioning persons who live in general community settings. The subject of income for community providers is usually not discussed nor is the economy of scale value of the RHCs.

Because those people use their organizations and positions to push to have RHCs closed, I find myself in the position of defending RHCs. Finally, I have decided that it is important to use this blog as a resource to put out the facts and perspectives that I and others find salient to the discussion. So, here I am back, again inviting you to join in discussion, hoping that you will write, not just in response to what you see written, but also to initiate topics that are important to you. You can do that by sending your writing to me for publication: ddexchanges (at) gmail.com.