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
ActionDD

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!
Namaste!
Saskia

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.

2. SSB-6780 DOES NOT ADDRESS HOW A QUALITY COMMUNITY SYSTEM CAN BE ESTABLISHED THAT PROTECTS THE BEST INTERESTS OF CURRENT RHC RESIDENTS. In fact, it diminishes resources needed by the people that the RHCs serve.

3. To accomplish this, IT SEEKS TO TAKE AWAY THEIR PROTECTIONS.

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."

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


Committee Members

Senator
Room
Phone
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

TIMES EXPOSE..ADULT FAMILY HOME ABUSES

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?
Namaste,
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
Namaste,
Saskia

SB6780 RHC CLOSURE BILL

CLOSE ALL 5 RHCS?

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!
Namaste,
Saskia Davis

Developmental Disabilities Exchange:

Everyone's Input is Welcome

This evening, I finally can invite everyone to participate in this blog. Until now, the "comment" section has been locked; and it seemed wrong to invite you to conversation and then prohibit it, so I've been waiting. I am new to this business of blogging, so I'm just feeling my way along.

Part of my background is as a facilitator of peer support groups. Our groups were premised on the belief that when each person truly feels heard, s/he has or can find all his/her own best answers. I am also depending on that premise as I begin this blog. Additionally, I am depending on synergy, the concept that the creative sum of a group is greater than the simple sum of it's members. We all have experience to share for the benefit of others. All of us have felt frustrated and mired, at one time or another, by the system. We can use this blog to ask others how they got past the same hurdles or strategize to do it together. Among us we have resources we perhaps do not even realize others are aching to learn about. And we all have experience that can help others broaden their perspective.

There has been so much division in our collective of dd advocates, caregivers and families, I hope to see healing of that rift. My vision for this blog is open sharing and caring, passionate dialogue which, while acknowledging differences, also respects them, bright, new ideas, and, eventually, a sense of safety, belonging, trust and mutual support: a sense of community and discovery of creative solutions.. Conversely, it will not be productive to disrespect the choices others have made for their loved ones or cast blame. People who feel the need to do that are encouraged to try on a sense of curiosity and interest, instead. It is amazing how transforming it can be when curiosity and interest can replace judgement. It takes real work, sometimes, to accomplish it, but it is always worth the effort.

Thanks for visiting. Please explore the site & leave something for us in the comment box. Your comment on something in the blog, a resource recommendation, your story, your self introduction, a need, whatever you are inspired to write.. It will help me to know you and it will give others courage, too. Thanks. "Comment Moderation" is turned on, but unless it is spam, or something truly crude or rude, I will post it as written. Saskia

RHCs: Keep or Close & Why?

Ever since Gov. Gregoire proposed in her budget to close all of the residential habilitation centers, (RHCs), I have been asking: "What would be gained?"

"Revenue savings?" Hardly! Even though the closure study missed many of the costs associated with "community" services for people with developmental disabilities, it did admit that RHC closures would cost the state money!

Liberation for RHC residents? From what? From their homes and friends? From excellent care, services and activities? How about from safe environments and programs assured by Federal audits ?

RHC residents are not prisoners. Their parents and guardians probably had to struggle to have them admitted. Despite the general rule that people receiving short term admissions (the only ones permitted), will be returned to "community" placements, some guardians are so happy with RHC care and services that they petition for long term residence.

"Better services for current RHC residents?" No.
For 3 reasons:
1) Most still living in RHCs are those requiring the most intensive services, more so than most "community" providers can offer. When DSHS last attempted to close Fircrest, it opened it's doors to "community" vendors who were encouraged to "window shop" for potential clients. Repeatedly and often, "community" vendors were reported to have said, "Keep Fircrest open: our facility cannot take care of these people."

2) RHC s comply with Federal Standards and are required to pass stringent audits; the quality assurance by the state for it's privatized, "community" clients is weaker.

3) Emergency departments, jail or mental hospitals are poor alternatives for people with developmental disabilities whose medical, psychiatric or behavioral conditions escalate beyond their "community" placements' capacity to accommodate them. RHCs provide the safety net and venues for their stabilization, in most cases for return to the "community".

So....what am I missing?
Saskia