Aimee Mullins at TEDMED 2009

There is a lot of emphasis, lately on language, especially debate over the words "mental retardation." On the one hand, with regard to public services, diagnoses of pathology are often required to obtain them. We have to be careful that in insisting on retiring old language, we somehow retain the ability to access needed services.

On the other hand, language very much shapes our perceptions;, which, in turn, shape our relationships with others. How we think about people with "disabilities" may have everything to do with how we treat them and how they, in turn, perceive their own abilities, potential, limitations, and even their self worth.

Aimee Mullens: have you heard of her? Heard her speak? She is a very able young woman, a sexy athlete, model, actress, whose legs were deformed at birth (fibular hemimelia) and subsequently amputated. She is also very bright and articulate. Speaking at last Fall's TedMed conference, she told many moving stories, reframing the concept of what society regards as "disability" and vividly illustrating the impact of language and perception on learning and achievement.

Watching, listening, I wondered if her points might be at least in part what drive the commitment of those who work to close state residential facilities. Is it a belief or fear that the empowerment, such as Aimee advocates, cannot occur for developmentally challenged individuals in such communities? What about it; can they? And if so, who can they best serve? To watch the video, just click on the title at the top of this post.

***********A REGULAR GUY***********

Excepts From a Funny & Moving Book

Here are excerpts from an enjoyable, and eye-opening story by Barbara Shumaker. I recommend a visit to the website cited below for the entire piece.

'"we got a letter from an attorney asking us to contact him about the bicycle accident involving Matthew. It turned out that while riding his bike, Matthew had apparently collided with a young boy on his bike the month before.

"Matthew? What's this about a bike accident?"

"Who told you?"

"Someone sent me a letter. Was the boy you bumped into hurt?"

"Pretty much."

"Dear God.
Was he bleeding?"

"Probably. Am I in trouble?"


My husband and I came to the heartbreaking conclusion that Matthew was no longer safe in the community where he had grown up, and his impulsive actions were putting others in peril. He needed more supervision, more than we or the local school could provide."

"The good news now is that Matthew is thriving at Camphill, and is an important part of its community of disabled people. He goes to class, cooks and does his own laundry. He prunes trees, tends an organic garden and takes care of the grass. During the winter he shovels snow gleefully, and has become fascinated with weather patterns in the Northeast. He brags about his new found responsibilities, and tells us he is good at hard things."'


The entire story appeared in the on-line newspaper, SF GATE, March 15, and in the SF Chronicle. Read it at : http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2006/01/15/CMGQIF603V1.DTL#ixzz0jFDn9asl

Barbara Shumaker has written a book about her son, Mathew: It is available on her very resource-rich website: http://www.laurashumaker.com/?p=120

Camphill Special School is a private, non-profit residential and day school in rural Pennsylvania. A "Waldorf" school, it was founded and is operated according to the philosophy of Rudolf Steiner. I found my visit to their website an inspiring experience that expanded my sense of the possibilities.
Saskia

VOR 2010 ANNUAL CONFERENCE & INITIATIVE

MARK YOUR CALENDAR
June 4 - 9

The Liaison Capitol Hill
Washington, D.C.

REGISTRATION

EARLY BIRDS SAVE

FOR DISCOUNT, REGISTER BEFORE APRIL 1

VOR Members who register before April 1, 2010

receive a discounted registration fee of just $40.

Available at http://vor.net/events/ :
Complete details, online registration or flyer with details, & registration form

Sponsorship and Recognition Opportunities!
Complete conference details: http://www.vor.net/events/

Source: VOR Weekly E-Mail Update
March 19, 2010

ABOUT VOR
Founded more than 25 years ago in 1983, VOR is a national 501(c)(3) organization governed by a volunteer board of directors and funded solely by dues and donations. We receive no government support. Membership is available at vor.net

Throughout its history, VOR has been the only national organization to advocate for a full range of quality residential options and services, including own home, family home, community-based service options, and licensed facilities. We support the expansion of quality community-based service options; we oppose the elimination of the ICFs/MR (institutional) option.
VOR represents primarily individuals with mental retardation and their families/guardians. VOR advocates that the final determination of what is appropriate depends on the unique abilities and needs of the individual and desires of the family and guardians.

MISSION
"Our Mission is to unite people in advocacy, to educate and assist families, organizations, public official, and individuals concerned with the quality of life and choice for persons with mental retardation within residential options. This includes home, community based options, and facility-based care."

SOURCE: VOR website. Abridged, reprinted with permission.

YAI Network's 31st Annual International Conf. 2010

On March 22, 2010 @ 5:22pm, Lynn U. Berman wrote:

Hi Saskia,

I thought your followers on Developmental Disabilities Exchange might be interested in the following information about our upcoming conference in New York City.

The YAI Network's 31st Annual International Conference: “Decade of Decisions: Moving Forward in Developmental and Learning Disabilities” will be held on April 26-29, 2010.

Designed for professionals at all levels, family members and individuals with developmental and learning disabilities.

Features hands-on trainings & extended sessions for in-depth training.
More than 120 seminars and workshop topics include: Advocacy, Aging, Autism Spectrum Disorders, Challenging Behaviors, Clinical Issues, Day Services, Early Intervention, Family Supports, Health Care, Inclusion, Positive Behavioral Support, Residential, Self-determination, Sensory Integration, Sexuality/Socialization, Workforce Issues, Employment, and Staff Training

The Premier HealthCare Training Institute will host its 9th Annual One-Day Conference on the Medical Home on Wednesday, April 28, 2010, 9 a.m. - 4 p.m.

Rooms available at special YAI conference price.

For more information, visit yai.org/conference. Brochure available. Online registration is open. Or contact Abbe Wittenberg at awittenberg@yai.org, or 212-273-6472.

For more information about the YAI/NIPD Network or to obtain services, call
1-866-2-YAI-LINK or visit www.yai.org.

Lynn U. Berman
Edited for publication by Saskia Davis

Special Leg. Session: calls and emails

*

WA. PEOPLE WITH DD NEED ALL 5 RHCS in the FULL CONTINUUM OF CARE FOR THEM.

It's time to call & email your legislators, again. The more, the better.

Get friends and family to do the same. And, tomorrow, start over!

Kishorit Therapeutic Community: Israel

I've been reading a book, Rachel in the World - A Memoir; and the author took her daughter to this place in Israel. It is a self-sustaining community. I think this would be wonderful for some of our folks! Here is a link to it - http://www.kishorit.co.il/SiteFiles/1/1689/13030.asp -
Pandiecats

Discrimination by Arc Against RHC Residents?

This article was submitted by Pandiecats. In it, she elaborates on comments she made in response to the article entitled RHC &/OR Community" Arc & A Family Who Knows Both. (To read it, click article name in side list: 3/18/2010)

Pandiecats: The Arc of Washington has banned me from their Facebook group. They also won't post anything from me on their blog. I have been banned!

This is the ARC’s mission statement : " The Arc of Washington State has advocated since 1936 for the rights and full participation of all people with developmental disabilities. Along with our network of members and chapters, we support and empower individuals and families; connect and inform individuals and families; improve support and service systems; influence public policy; increase public awareness; and inspire inclusive communities. Our Vision is for a world where people with developmental disabilities are included in their communities and neighborhoods and where quality supports and services respond to their needs and personal choices."

This is the last letter that I posted and I think they just got sick of me talking about things that are not on their agenda - I wish they would stand behind their mission statement!

"I'm very frustrated by the tactics of some advocates for the disabled. I have sent this letter to several Senators regarding my opinion. Hopefully, some will see the discrimination tactics and think of real people and not politics.

I have attached a flyer regarding our son, Thomas. He is a resident at Frances Haddon Morgan Center. I understand there are a lot of issues and politics surrounding the use of RHCs for our disabled. The ARC has done a good job of focusing on our disabled family members that are able to live in a residential setting, but in advocating for those people, they have alienated the segment of the disabled community for which a residential setting is not safe or appropriate. The ARC has employed a divide and conquer strategy to advocacy for the disabled.

I used to be a supporter of the ARC until I realized the discrimination that they promote. Even prior to our son needing to live in a RHC and even before having a disabled child, I could see the benefits of maintaining RHCs, so my opinion is not based on the fact that our son lives there. I do not understand why people who are advocates for our disabled are trying to take away the very supports that are needed to help our family members be successful and part of the community.

Yes, even living in a RHC is part of the community! It actually enables many to be more active than if they lived in a group home."

Well, they have not heard the last of this - I am going to make this discrimination well known. I'm sick of people deciding what is best for others. I had written on the ARC blog and the policy person responded with a short-sighted posting about choices and in an "institution" people couldn't make choices like what they want to eat or what color to paint their room. I'm sorry but WHO CARES about that when safety is at stake. I wrote a response to her defensive posting but when I went to post it, my first one had been removed. I questioned the lady in a private email - this is her response:

"It was brought to my attention that the comments were not related to the blog article, which was focused on revenue options being considered by the legislature. In the future, please make sure your comments are about the blog article. Thanks!"

I then tried to post it to the next Blog article posting (which actually talked about Frances Haddon Morgan Center) and said that my letter did pertain to what the blog article focused on. It has not been posted (I'm not surprised)

So anyhow - on to more letter writing! We need to get the word spread about the discrimination against some of our disabled community members.
Pandiecats

"Developmental Possibilities Awareness Month"

Here is some very tastey food-for-thought, from a lengthy report of a workshop presented by the New Mexico Center for Self-Advocacy in Albuquerque. The writer, Jaime Vergara, is the father of 2 children with autism spectrum disorder.

"Based on current wisdom that chaos is at the bottom of our physics, and individual diversity is the universal norm, the view that “disability” is just one's different ability, is ascending. Societal sensibilities looks on individual possibilities rather than on disabilities. "

"The insistence on an Individual Education Plan for every child in Special Education is on target; let us carry it to its logical implication-that every child in the education system requires an IEP of their possibilities!"

"The seed never explains the flower; nor the chrysalis, the butterfly! So it is with people perceived to have been born missing something from the so-called “norm.”

"a disability to be overcome is trumped any day by the affirmation of one's possibility fully embraced."

Quotes & info from SAIPAN TRIBUNE: "Opinion" Saturday, March 20, 2010, by Jaime R. Vergara http://www.saipantribune.com/newsstory.aspx?cat=3&newsID=9808

RHC &/or Community: Arc & A Family Who Knows Both

Summarized, below, is an email exchange which vividly illustrates both sides of the dispute over RHCs. It was provided by the family of 2 people with dd: one, Jason, a child living at home with his parents, the other a sibling, David C., who lives successfully in an RHC. After the introductory note by the child's mother, the summary represents their correspondence with the Policy & Advocacy Coordinator of Arc of WA. state.

"Good Morning.
I am forwarding to you the following e-mail conversation that David C's family has had recently with the Arc in response to their “Call to Action” against this state's RHCs.

I am the mother of Jason, an eight and a half year old with Down syndrome, who is also in treatment for leukemia, and David C’s sister.

I know personally the differences in what was available to my parents (for David) and what my family has available for my son. My husband and I have received limited help from the State of Washington. Jason has had “birth to three,” preschool and now is in first grade/life skills at our local elementary school. Our average annual cost for his medical and therapy is approximately $15,000.00. Are we complaining? No. We are his parents and we gladly take on the responsibility. As a family, we know that keeping David safe and sound is worth the sacrifice.

It is hard to go to different local events and hear parents complaining that they only get 16 hours a week of personal care for their three year old with Down syndrome. Isn’t that covered under “parenting?” I asked one mom, who is a close personal friend and very active in the Arc of Whatcom County, "When is enough, enough? When your child receives a million dollars a year in programs?"

"I think my family will say “No Thank You” to their offer to help us "find appropriate community placement for David."
by Dorene M.
***
The "call to Action," to which Dorene refers, referenced "compelling personal stories" to legislators by RHC families and guardians, describing the need for RHCs. The call to action exhorted readers to write their own stories of why the "community" is important to them and send them to Arc of Wa. for distribution to legislators.

Implying that RHC residents were utilizing more than their fair share of resources, the call to action referenced "18,000" people with dd, who, it claimed, receive no paid services and 940 people living in RHCs, leaving only 79% of the dd budget for 97% of the state's population with DD. (or 3% use 21%) It also claimed that "12" states had closed their "state institutions for DD" and predicted that all the others would be closing theirs over the next few years. Without context, it also referred to downsizing having been occurring since a 1970 "peak" of "4,200". Refuting RHC advocates' beliefs that RHCs are the only possible placement for current RHC residents, it stated without mentioning the cost, "Many individuals with more significant medical needs and disabilities are living fulfilling lives in the community."
***
David C.’s brother, Dan, replied to the call to action.
"I was disturbed to read the call to action that was forwarded by an Arc member to my family. I believe my family has a unique perspective and opinion on the benefits of RHCs as well as the cost struggles for individuals with developmental disabilities who live in the community. I have a 40 year old brother who resides at Fircrest in Shoreline and an 8 year old nephew with Down Syndrome who lives in Bellingham. I represent my family.

The Fircrest of today and the last 25 years is not the Fircrest of the 1970s and 80s by the simple fact that those who are able to thrive in the community have been placed in the community. I have spoken with former residents who were placed there during that time period, and I agree that they are able to live and thrive in the community. That is not the state of the residents who live there today. Level of care, stability, and the safety of constant state supervision has been proven necessary. The disruption of consolidation and closure of RHCs in the last 10 years has even led to deaths in this very fragile population. Also, the number of individuals in RHCs has dwindled (only) because the state has not allowed new residents for years, even though there are individuals who could benefit from living in this type of environment.

On the other side of the spectrum, my sister's son, Jason, has Down Syndrome, receives no state/government assistance, and lives at home with his parents. Over the 8 years of his life, he has had heart surgeries, spent time in extensive therapy, and has battled leukemia. My sister and her husband spend thousands of dollars each year privately, but even with the personal struggle to their household, they understand and support the use of RHCs.

I struggle with the notion that the money saved from RHCs will be passed on to citizens with disabilities that live in the community. First, with a $1.5B budget deficit, any money the state saves by closing RHCs will go back into the general fund. Second, I have not seen data that supports the notion that the level of care that residents in RHCs require would be less expensive by moving them to the community. 24 hour supervision, daily medical care, room, board, and additional transportation services will be just as costly. Third, once the RHCs are closed, what is to stop community group homes and residences' employees from organizing into unions, thus increasing the cost to the state through increased benefits. Finally, over half of the cost of RHCs is provided by the Federal Government through Social Security. My brother, being one of the younger residents at 40, receives Social Security benefits through my parents. This is the case for many residents since their parents are older in age or deceased.

Over the years, my mother has met and spoken to many state legislators about Fircrest, even providing visits. These visits and conversations change opinions and attitudes. I extend the offer to you. Any one of us would be willing to talk and arrange a visit to Fircrest so that you can witness, first hand, the care, stability, and safety these very fragile state citizens receive. Again, I sympathize with struggles parents and loved ones with developmental disabilities endure, but taking needed benefits away from one, with no guarantee of giving it to another is not the answer. I and my family would appreciate a response to this e-mail.
Thank you.
Dan C (David C's brother, Jason M's uncle), Dean and Dorothy C (David C’s parents, Jason M's grandparents), Dorene and Dave M (Jason M's parents, David C's sister) and Deanna Z (David C's sister, Jason M's aunt)
***
After 10 days, Dan wrote, again, requesting a response. In that letter, he said, "I don't dispute that there are severely disabled Washington State citizens that live in our communities (in fact some might even thrive in an RHC setting). My concern is that the call to action does not represent the reality of individuals living in RHCs TODAY, and the implied assumption that the funding issues can be addressed through a blanket 'everyone needs to/can fit into the community.' "
***
He received a reply from her that she was busy, but she was "more than willing to talk with" him and would reply. She also shared that she has a teenage son with autism and her perspective is that of a single mother..
***
She wrote again March 8, 22 days after Dan's original letter.
As had her preceding note, the end of her letter contained the following disclaimer: (Bold print by this editor)

"The information contained in this email is for informational purposes only and should be evaluated by each recipient for content accuracy and applicability. It is not intended to represent the viewpoint of The Arc of Washington State."

Her letter was prefaced as follows: (Bold print by this editor) "It may help to understand that The Arc of Washington follows policy guidelines set by The Arc of the United States. I am not responding to your letter with personal opinions, but rather with policies in place for our organization."

Some of what Dan had written was not addressed. She acknowledged Dan's views as his "perspective." Referring him to videos on the Arc web site, she told him that others who had had similar, strong feelings had changed their minds. Re: the disposition of any RHC closure savings, whether to the general fund or to service-deprived "community" residents with dd, she assured that the bills Arc supports would direct them to community dd residents. Without mentioning that the "community" matching federal funds are considerably less than to RHCs, she said that Home and Community Based Services Waivers also receive a federal match. Non-specifically, she also mentioned that documents produced by DSHS deny that there have been deaths resulting from "moves from an RHC."

She said, " We have worked for years to advocate for better services in the community and believe it is past time for our state to begin the process of closing an antiquated model in segregated living and focus more on the best practices of community living." (bold print by this editor) Also, saying that "adult family homes and group homes are not appropriate placements for the population we serve," she stated: "Those who tried community settings in the past that failed often had an inappropriate placement." She advocated SOLAs (State Operated Living Alternatives.)

She closed by saying the Action Alert that they had received had been intended to provide stories to convince families such as David C's of community successes even with the "most significant disabilities" and offered to help him find community placement for his brother!

In his reply, Dan thanked her and promised to compare Arc's website material with his personal investigation. Having already viewed some of the videos, he said, in his experience, they were not representative of people at Fircrest of today. He closed, saying, "Just be aware that the Arc does not represent all families with developmental disabilities and actually drives divisiveness. Imagine what could be accomplished if the Arc wasn't trying to rob Peter to pay Paul." (Bold print by this editor)
***
So, what do you agree or disagree with and why? .................Saskia

Seminar Notice: People with DD & Alzheimers

Press release submitted by Tami S Seitz 3/15/10 (Excerpted)
(http://qconline.com/archives/qco/display.php?id=483980)

MOLINE, IL:
"Alzheimer's disease is increasing among persons with developmental disabilities, particularly those with Down Syndrome. It must be considered a terminal condition that presents numerous challenges to provider organizations, families and friends of those who are affected" explains WIU Special Education Professor Don Healy.

An educational seminar sponsored by the Alzheimer's Association–Greater Iowa and Illinois Chapters and the Rehabilitation Research and Training Center on Aging with Developmental Disabilities will be held at the Western Illinois University-Quad Cities campus Wednesday, March 24. Cost to attend the morning session is $30, while there is no charge for the afternoon session. CEUs (3.5) in continuing nurse education are available for an additional $10. The event, co-hosted by the University of Illinois, Chicago, is part of The Professional Training Institute 2010 Programs.To register, call (847) 933-2413.

From Mainstreaming to Specialty School?

Could this proposal have merit?

By Carl Orth | The Suncoast News NEW CHARTER SCHOOL (excerpts)
Published: March 6, 2010
HUDSON - Potential is a terrible thing to waste. So Emile Laurino hopes his concept for a new charter school will go to the head of the class. Families are looking for a different approach to education for their children with developmental disabilities, according to an "action plan" for the charter school. " They want something different than the traditional classroom," Laurino explained in the statement. "Once they graduate from school they want to go to work; they want to provide service and help others; they want to be an integral part of their community."
Laurino, the chief executive officer for the Center for Independence in Hudson, believes such a school could cater to teens and young adults with developmental disabilities ages 16 to 22. "Young adults preparing themselves to go out into the world of work" is how Laurino sums up the mission of the proposed educational facility "I'm hearing more and more" the need exists to fill this educational void", Laurino said.

"If enough people show an interest, the Center for Independence would work toward setting up the specialized school as a separate nonprofit corporation with its own board of directors," Laurino said. As a charter institution, the Center's school would be privately operated, but would be under the supervision of the Pasco County School District. Laurino, his staff and board members of the Center for Independence already belong to many community groups, including Seven Springs Rotary Club and Chambers of Commerce. So they might be able to draw upon local resources.
The charter school motto could become "Everyone Has the Right to Know All They Can Know and Be All They Can Be," the action plan concludes.
What do you think?

Expanding Persective

Recently, I started this blog, hoping that conversation among people with their differing needs & experiences would lead to mutual caring & support &, eventually, to mutual, creative solutions to the problems we face.

Care for people with dd is very expensive, but thinking back over the many years I have been involved, assuming there is not enough money for this or that only assures that the thing cannot be afforded. We must go for what is best for the individuals who need the services. That is where the progress always has been made.

Where my sister, Kathy, lives, all her needs are provided for, which is a wonderful blessing. I know that I would burn out in about 6 months if I tried to take care of her, myself, even with help; and even then, she would suffer losses, for it would not be possible to provide from home all of what she needs. Her needs are just too intensive. If there were a situation in the "community" that could meet them all, it would be hard to justify the extra money it would cost when there are so many others who also need services.

This evening I was contrasting her living situation with another I encountered a while back. Kathy's Fircrest home is brightly lit, uncluttered and spacious with communal living room and activity/dining room shared bathroom and wonderful bathtub with excellent access, and semi-private sleeping areas for her and her 6 housemates.

The other situation I encountered as I was leaving from a meeting in a small, western Washington town. I was just approaching the freeway on-ramp when I noticed a dog trotting along in the same direction. I stopped & enticed him into my car. Finding that he wore a tag with an address, I took him home. The house to which he belonged was more on the order of a shanty. The property had not a plant nor blade of grass growing on it, just a wide expanse of hard dirt. The house, badly in need of paint, appeared to be only about 400 square feet.

A young man came to find out what I was doing with the dog and gratefully accepted custody of him when I explained. He said neither the dog, nor the house was his, but that the owner, his foster mother, was in the hospital, having taken a fall. He asked me inside so he could take my name and address for her. Inside was clean and old-fashioned homey, with lots of family photos on the walls of tiny, crowded rooms, the ones I saw, anyway. The young man chatted, praising his foster mother to the skies for having raised him and several other foster children, some of whom he called "mentally retarded," and all of whom he claimed as "family." He explained the children all had grown and were gone, now, didn't say where or how they were doing, except for one he said had gotten into trouble with the law. Most of his conversation was in praise of his foster mother whom he knew as the biggest hearted, most wonderful woman, ever. As I looked at the tiny living room, I wondered how she had managed with so many in such modest circumstances.

And I wondered how typical it was for DSHS to support living situations such as this one. I thought about the love the young man had experienced, pondered the struggles the woman must have had to keep it all together. Listening to the young man talk about his former life in that house with it's owner and all the children she took in who might not, otherwise, have had the love she had to offer, my perspective was expanded.

When I think of this, now, it helps me understand how there can be the sense of injustice that some express about the resources that are spent in residential habilitation centers (RHCs) for people like my sister. Then, I think about the fact that she and those with whom she lives need every resource that they are provided. They should not be deprived of what they need because of the needs of others. Instead, we all should be working toward more for those who receive so little or nothing at all.

I am convinced that in our society, there is plenty of money and plenty of resources. What is missing, rather than money, is the will to prioritize it's use for these purposes. It is there that we need to be addressing our collective attention.

As this blog grows into the inclusive vehicle that I envision, I hope to see us brainstorming with crackling creativity to find or develop the financial where-with-all to meet the needs of everybody. If this seems like pie-in-the -sky, perhaps that is what it will turn out to be; but for certain, nothing new or more creative will happen without some new kind of effort and thinking; so I invite you to come along, share your experience and perspective so others have a sense of who you are and can begin to see through your eyes. If enough of us do this, a sense of "our community" will emerge. From there, we could surprise ourselves with what we co-create.

I surely hope you will join in. I just know you have something very unique and special to share, even it it is something you are used to and, so, take for granted. How about it? You can click on "comments" and write or paste-in your contribution, or you can email it to me & I will post it for you. Saskialucianow@gmail.com
Together we are Awesome......Saskia

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

Prosecutor’s employee delivers with speed

Here is a heartwarming, "community" oriented, success story. It is reprinted from The Journal on line:

By Lauren Pack, Staff Writer 10:38 PM Sunday, February 28, 2010
HAMILTON — Elizabeth Crehan loves sports. Known as Liz or Lizzy to most, she excels in softball and is looking forward to playing shortstop this spring. But perhaps she should have considered track, because the 39-year-old laps everyone daily in her deliveries for the prosecutor’s office.
Crehan, daughter of retired Butler County Judge Matthew Crehan and sister of attorney Ken Crehan, showed off a trusty pair of black Reebok sneakers when asked what makes her so swift.
Her deep brown eyes are focused as she darts from office to office with mail, files and legal paperwork that has to get to the right place — now.
A no-nonsense haircut and serviceable outfits are the right fit for a full day of work, but make no mistake — there is nothing ordinary about Crehan’s work ethic or smile. She knows everyone in the Government Services Center and always takes time to say “hi” and catch up on the latest scuttlebutt.
“She makes us smile,” said Marcia Holstein. prosecutor’s office receptionist.
Crehan, a Hamilton High School graduate with development disabilities, has held the position for 18 years. She has no plans of making any changes.
“I like what I do,” Crehan said. “I would miss my friends too much,’
Her father laughed and said, “they have to make her take a vacation.”
Despite her challenges, Crehan has a memory for numbers, which makes an often-painstaking job a breeze for her. She pulls scores of case files for the seven common pleas court dockets.
“She can pull 70 lickity split,” Holstein said. “It’s amazing how she remembers the cases by their case numbers.”
When not on the run, Crehan operates the shredder, destroying paperwork. Sometimes it takes hours.
“It’s my job,” Crehan said, shrugging at the notion that it is a tedious job.
The ‘can-do person’
When Crehan’s father, Matthew, got involved in politics in his election bid for Butler County common pleas judge, it wasn’t his late wife Sheila’s cup of tea. So he called upon his daughter as his escort.
“She got to know all the politicians,” the retired judge said with a laugh.
Her time on the event circuit also helped land Elizabeth a job in the prosecutor’s office. It’s a job she has relished for nearly two decades.
At the age of 20, the Big Blue alum was offered a job as a “runner” by then-Butler County Prosecutor John Holcomb. Eighteen years later she is still running.
Fellow employees and hundreds of others in the Butler County Government Services Center who consider her a friend say she is rarely in a bad mood or absent from work.
The 39-year-old marks her rounds daily, moving swiftly and easily to county departments making deliveries. Then she settles back to the office on the 11th floor for filing and document shredding duties.
Her description of daily duties:
“I come in, take my jacket off, leave my pop on the table, sign in, go to the clerk’s office to get things stamped, drop off stuff to offices, take the mail to judges’ mailboxes, bring mail up, go to auditor’s office for Susan and Melissa,” Crehan said. “That’s it.”
She also tries to squeeze in some document shredding and filing time.
Around the office, Crehan is known as the “can-do person.”
“You will often hear her name on the intercom,” said Prosecutor Robin Piper, “because we need to get something somewhere fast.”
Piper said Crehan is the personal pipeline for his office to other county offices. He described her as efficient and focused.
When Crehan isn’t working, she is at sporting events, movies, dances or out to dinner. She loves vampire movies and Mexican food best. Many of the events and outings are coordinated by the Butler County Board of Developmental Disabilities.
“She has more of a social life that I do,” said Matthew Crehan.
Elizabeth was adopted as a baby. Despite countless trips to hospitals, her developmental challenges were never fully diagnosed, her father said. He said he now believes she has a form of autism.
It was important to Matthew and Sheila Crehan that their youngest child be as self-sufficient as possible. And today she is.
Hidden talents
Crehan lives in West Hamilton with her cat, Gabe. She shops with her father for groceries, but cooks for herself and sometimes bakes treats for co-workers.
“She always looks on the bright side. Maybe more of us should try that,” Matthew Crehan said.
Sandy Fowler, a county court administrative assistant, drives Crehan to and from work most days. Fowler has sisters with developmental disabilities and also considers Crehan her sister.
“She is off the charts,” Fowler said about Crehan’s independence and work ethic. Fowler also noted another of Crehan’s hidden talents — singing.
“She loves to sing with the radio — loud,” Fowler said with a laugh.
Matt Reed, Crehan’s softball coach in the county’s therapeutic recreation league for the disabled, said you can set your watch by Elizabeth. She eats lunch nearly daily with Reed, who is staff attorney/magistrate for Butler County Judge Keith Spaeth. Many days Spaeth also joins them.
“She is always here on the dot for lunch, but she also knows when it is time to go back to work,” Reed said.
One day Reed said he told Crehan she was infamous around the courthouse.
She smiled and said, “No. I’m just popular.”

more on SB6182

Understanding that it is never over until the budget is signed by the Governor, if all goes well, SB-6182, the bill that would have removed RHCs from state statute, has died. As of 5:45, with cut-off at 6:00, it had not passed out of the Rules Committee, and Committee Chair Brad Owens' Aide did not consider it probable that it would at such a late hour.

How this would affect the budget proviso that would fund closure of FHMC is a question mark. In theory it should prevent it but those of us who depend on RHC services and those who want to be able to, some day, will have to stay vigilant right up to the end.
Saskia

Pitting People With DD Against Each Other

SB 6182, should it become law, would remove RHCs from State statute. It would clear one obstacle from the path of closing the RHCs. Yesterday, in the morning it was added to the Sen. Ways & Means schedule and then passed on to the Rules Committee without having had a public hearing. Last year, it was tabled for lack of sufficient time for testimony in it's hearing! Why would public testimony have been avoided this year?

Those perpetuating the closure battle surely must know that RHCs actually set the basis for community funding; and closing them very likely would result in less, not more, available community funding for those who are currently wait listed ! So, whose interests could the closure push really be meant to serve? Who stands to gain, especially financially?

Pitting people with developmental disabilities against each other is wrong. Period. Each person is important!. Why not give up the attack strategy so we can work toward understanding and mutual support? Why not, in deed?

Saskia