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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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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!

ARC LEADERSHIP IS FAILING TO RECOGNIZE OR ADMIT:

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

2. CURRENT RHC RESIDENTS ARE THERE BECAUSE THEY WERE ALREADY FAILED BY THE COMMUNITY.

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?
Saskia

2 comments:

  1. This comment has been removed by the author.

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  2. 
(Bob's post was sent, yesterday, for posting under "KEEP OR CLOSE & WHY."and is posted there. Since it addresses the subject of this post, it is re-posted, here. 
Saskia Davis, Blog editor)

    Bob wrote, "The ARC message urges those who have lived in RHC’s and now live in a different setting to write their legislators. How deceitfully transparent. The fact is that huge amounts of money are to be made by vendors who support ARC with their dollars. The greed should be obvious to those who are not blinded by desperate need. To prey on those people is evil. Naturally, if my daughter, Angela were able to live in a setting closer to her family and still get the safe and fulfilling care she now receives at her cottage home at the Rainier Campus at Buckley, she would have already done so and indeed could respond to the appeal. (I would have to respond for her, since Angela at the intellectual, emotional and social age of a 2 year old can neither speak nor write.) In fact, Angela did live in such a setting - twice. Both times she was rejected by her new “homes” because they could not or would not deal with her complex medical and emotional issues.

The facts are these: The congregate setting offered in the campus-like setting of our state’s RHC’s is the most fulfilling and least restrictive available for our state’s most severely disabled population. In many respects it is also the most integrated, because it offers many more opportunities for field trips and group activities on campus than any other venue. The Supreme Court of the US ruled in the Olmstead decision that states must offer settings of choice, in the most integrated, least restrictive setting possible. My daughter’s home at Rainier does just that.

And it costs less. Yes, less. Data provided by DSHS has consistently shown that costs in a “community” setting to provide the same range of services that are provided at the RHC’s are considerably more! Forget, the rhetoric for a bit. Just think logically. It just costs less to provide a single service for several than it does to provide that same service for one. That’s why we have classrooms in public schools instead of a single teacher for a single student.

We should be offering our state’s RHC’s as centers to provide desperately needed services to all those 18,000 un-served mentioned by ARC. The numbers cited by ARC are so misleading because they imply that somehow, if my daughter and others like her were moved out of her home at Rainier, resources would be freed up to serve those 18,000. That is just ludicrous! How can that happen? Oh, I know. Put Angela in a minimally staffed adult boarding home (like those highlighted in the recent Seattle Times Articles) and take the money saved and give it to open more adult boarding homes staffed by minimally paid and trained staff so some RN can earn $1,000,000 per year delegating management of facilities.

Of course, the fact that since Angela’s medical problems caused two excellent faith based facilities to reject her, means that she would not survive long in such a setting and her untimely death would ultimately shout to the horrible truth that not all people can be so fortunate to fit the mold that the ARC would have us believe our DD population occupies.

To move my daughter would be her destruction.

Bob Gee"


    ReplyDelete

Comments are encouraged. By sharing perspective, personal experience, both positive & negative, ideas, resources and support, readers can enhance each others&; understanding and we will all benefit.