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.

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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.