We All Belong!

"He drew a circle that left me out,

heretic, rebel, a thing to flout;

but Love and I had the wit to win;

we drew a circle that took him in."

This verse comes back to me from childhood. I wish I knew to whom the authorship credit belongs.

Just now, it seems to fit perfectly the strategy that those who need RHCs are called upon to adopt.

One of ARC's and the DDC's newest initiatives is "We All Belong" They make it clear that what they mean is that all people with dd belong at home or in their local community, "not in an institution." "WE ALL BELONG!" is a wonderful statement which SHOULD include everyone, no matter where they live: in an RHC, in the family home, in a group home, in an apartment or a nursing home.

Lets embrace INCLUSIVITY TO THE MAX! Every bit as much as universities, hospitals, schools, senior centers, churches, nursing homes, group homes, intensive tenant supported housing, adult family homes, boarding houses and families that live together are part of the community, so are RHCS and the people who live in them. WE ALL BELONG! Lets sing it out and celebrate! ........Saskia

A Dose of Sanity For SB6182

Yesterday, some much needed sanity was added to SB6182 by senators who understand the importance of the role that RHCs play and who support fiscal accountability & even-handedness in making law, as well as absence of conflict of interest. Gold stars for Senators Schoesler, King, Honeford, Roach and Sheldon!

Saskia

RHC Closures=Jail

Here is still another lucid argument & plea by the mother of a person with autism. Having recently lived in the "community," her son now is in an RHC." One can readily understand his family's strong support for retaining them.

"This is my family's story if Fircrest is closed:

We just barely survived Fodor Homes and the stress of the closure. Our severely autistic son, who can be violent, came home to live with us; and it put me into the cardiac care unit at Virginia Mason for one week. We had to pay, out of pocket, six thousand dollars for one month for his respite care. Nobody even offered to help us.

If we build up services too fast in the community we will be repeating another Fodor Homes scenario. Look at the mess the adult homes are in! Didn’t we learn this the last time? Why are we going to do it again to severely autistic people and their families? Haven’t we suffered enough already? Our kids are autistic, this should NOT be a criminal offense nor should it be a reason to toss our kids out of medical support living situations into the “community” where these medical and behavioral supports do NOT exist.

Once again, we are repeating history. We still see, everyday, the results of state closure of Mental Hospitals that has resulted in homelessness for millions of mentally ill people. Are we going to do the same thing? Are we now going to make autistic people the new homeless? We do not have the proper services outside the RHCs to care for many with severe autism, so are we going to ignore the problems and solutions. Just like we did the mentally ill and veterans, so that we can save a few bucks?

My son should not be thrown onto the street or into the justice system JUST BECAUSE HE IS AUTISTIC! Are we going to become the state known for jailing it’s autistic citizens? Yet this is EXACTLY what we are doing. Closing the RHCs will not make severe autism go away, it will just dump these kids, when they hit a crisis, as they do, into a Jail which has no ability to meet their medical needs at all. This is not a fear, it is a CURRENT REALITY.

If Fircrest is closed it will put my son in danger of the three strikes law just because he is profoundly autistic. My son can be aggressive and this is common for those who are non-verbal autistic. My son does not understand that it is against the law to assault. In fact, he does not even know what the law is. He can not, at times, control his emotional outbursts. This is why he has the intensive medical and behavioral intervention that the RHCs can provide him. He will more likely be physically and sexually abused in prison. My son will take off all his clothes if he even gets one drop of water on them. What do you think will happen to a handsome, non-verbal, autistic, person in jail when they and take off all their clothes because they are wet? How can we put someone like my son in jail or prison? What does this say about us in Washington State that we punish the innocent? What will the rest of the country think about us? If the safety net of Fircrest is taken away, my son could be sent to prison simply because he is autistic. How would you feel if this was your child?

Jailing autistic people will cost the state and us more money in the long run. One lawsuit that the state lost was for 4 million in Kitsap County because one poor autistic man spent 4 years in jail without being charged just because he hit his mother due to an autistic crisis. We are shutting down our safety net that will prevent many future lawsuits.

Advocates are supposed to help families like mine but they don’t and if Fircrest is closed it will make my life a living hell. It will put my 19-year-old son at risk to go to jail, prison, or become homeless, and it will make him an easy target for emotion, physical, or sexual abuse. This is about money, it is about taking away what my son and other people like him need to survive so that others can have the funds. This is discrimination and it is putting vulnerable autistic people knowingly in harm’s way. Why would any of us think that autistic people are better off in Jail or prison? Why?

Rebecca Sargent"

Gram's Letter to Legislators

Here is a grandmother's letter that was recently sent to legislators. I am posting it in the hope that it will help RHC opponents understand the importance of the programs for which they are advocating closure, and too, that along with the "community," RHCs have also sustained severe cuts in revenue, forcing elimination &/or decline of important services.

"Our grandson is in an institution; and he and many others are in desperate need of the care and safety offered to them there. They are residents that are unable to care for themselves mentally and/or physically. Many do not have families or the families that there are can not physically, emotionally or financially provide the care and safety to their loved one. Our grandson was born with severe Downs Syndrome; is aggressively Autistic and mute. He is unable to care for himself personally and requires 24/7 one-on-one care. After 18 years of being cared for at home, he was placed in an institution and has made lots of progress.

In the short time he has been there, there have been many cuts in the budget and the facilities. First it was the closing of the indoor pool and then progressed to the closing or eliminating of the senior citizen center; infirmary and outside activities. Recently the cafeteria has been closed and food service to the units has been eliminated on weekends. Our grandson and others have had their caregivers reduced from two caregivers for each resident to one caregiver to two or three residents. You can really see how this has affected him and how he has regressed, recently, as I am sure is true with many more of the others. The facilities have suffered severe cuts to their budget already and should not suffer anymore.

Other areas have closed their facilities forcing residents like our grandson into group homes. Residents like him could survive BUT would not be able to function properly. They would have to be heavily drugged and kept under lock and key. These facilities, either funded group homes or private ones, can not offer the educated 24/7 caregivers, daily medical monitoring or the safety that is needed.

We also have to LOOK AHEAD to the fact that when these programs are found to not be working or can not get adequate funding, or in the case of private ones they are not making a profit and have to close, the residents will be left with no place at all. THEN WHAT? We have to look ahead and not just act for the moment.

DON’T SACRIFICE THE RESIDENTS TO BALANCE THE BUDGET. BUT MAKE CUTS ELSEWHERE.

Please rule with your hearts and not your budget. All those like my grandson desperately need our help to be safe, healthy and in the best of conditions possible. Their families also need to have the peace of mind knowing their loved one is safe, healthy, cared for and as happy as possible. Please do NOT eliminate or cut the budgets and funding of these institutions.

Respectfully,
"Gram" Donna Evans
(published with the author's permission)

ARC/DDC videos

You are strongly encouraged to visit this website: http://olympiainsider.org/. Cut and paste this URL or click on the link in the left hand list. You will see a list of pictures representing podcast videos, below which are links that you can click to play or download. You can read instructions at the top.

What you will find is a series of surprisingly well done, very political videos, shot on the Washington State Capitol Campus in Olympia, many featuring public officials such as Victor Moore, Director of the Office of Financial Management, along with Sue Elliott of ARC and Ed Holen of the DDC and others. Each is about 4 minutes long and many promote the closure of residential habilitation centers. They were produced as a joint project by the Developmental Disabilities Council (DDC) and ARC of Washington. I do not know if any tax money is used by ARC (of 501c3 status) to fund this project, but, as I understand it, the DDC is a state agency funded by Federal grant which matches State funding, which means tax money is certainly funding their participation.

The use of Federal or State tax money for these purposes is of grave concern to those of us whose loved ones depend on RHCs for their safety and wellbeing. Shouldn't public money, both contributed by the government & retained by virtue of exemption from taxation, be used for the benefit of all of the people with dd instead of just those who fit the bias of the groups receiving it?

I will be interested to hear/see your reactions.
Saskia

For Late Talkers

This interactive book just came to my attention. I haven't seen it, personally, but it sounds wonderful for late talkers. THE BIG BOOK OF EXCLAMATIONS. Here is the URL: http://linkme4ever.com/watches/?p=2054 .

Please, if you buy and use it, come back to us with your review.
Saskia

ALWAYS MORE TO LEARN

It is easy for us to be experts on the type of developmental disabilities our loved ones, wards, clients, and neighbors have. Toward more mutual understanding & empathy and a deeper sense of community, we will be adding reading, movies & possibly even art & music.

Here are a few resources related to autism.

Temple Grandin
Dr. Temple Grandin is a remarkable woman with autism who teaches at a University and has made significant contributions to society with inventions & techniques for improving the lives of animals, among which are some which take the terror out of slaughter for farm animals.

She is very articulate about her own process and on the subject of autism in general. She has several books which can be sampled on her website. http://www.grandin.com/ ; then click on books and videos. From there you can sample her books. Also, be on the look-out for the story of her life when it returns on HBO.

Horse Boy by Rupert Issacson. Rupert Issacson tells the story of his own son's emergence from the confining entrapments of autism and how it came to be. It is a remarkable story, told well. Although real, it reads like an adventure story. It is also available on CD. This is quite an unusual remedy and expands the world of possibilities when considering treatments, management, and healing of autism.

Warrior Mothers: by Jenny McCarthy. Tells the stories of several parents and their children with autism, their struggles and some of their successes in reversing symptoms through non-standard therapies. It is unclear why the title refers to Warrior Mothers, since one of the parents instrumental in his son's recovery is a father. For people not, yet, familiar with treatments such as chelation for heavy metal poisoning (mercury and others) and diets such as the "specific carbohydrate diet," it is a good introduction.

Son-Rise: by Barry Kauffman. A father's story of his son, finding what worked, learning the meaning of unconditional love and acceptance without expectation. His son did so well with the constancy and quality of attention he taught them he needed, the family began teaching a model of unconditional acceptance that they developed. It is called the Options Process, and it, also, is described in a book by that name. These books are pretty old, so I went on line to see if they were still around. What I found was that they have given rise to: Autism Treatment Center of America: The Son-Rise Program.www.autismtreatmentcenter.org/.

Are you familiar with any of the above? If so, how did you find they affected you? Do you have some to share? Remember, they don't need to be on the subject of autism. This was just to get us started. Lets build this library together.
Saskia