WELCOME

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.


Finding Your Way Around

TO SEE OTHER'S INPUT: below each post on the right, click "links to this post;" or in the left side column, under "Labels," click the discussion link that interests you.

If there is no comment box below the post, click on
"# comments." It should open one.

TO CONTRIBUTE: add comments to posts in comment boxes &/or submit an article. Comments may also be sent for posting on your behalf. Email address as follows:

EMAIL: ddexchanges@gmail.com

MAILING LIST: add or remove name:
send request to email address, above.

WEB LINKS: to access other websites of interest, in the list to the right, just click on the underlined name.

FOLLOWERS: interested people, websites, organizations, businesses
who follow our discussions & choose to be public about their support.
Become a follower. Public support is a good thing!




Saturday, July 17, 2010

The House Where Kathy Lives

MORE THAN JUST A PARTY

Hawaiian theme, marathon kareoke, shy smiles and out-loud laughter, home cooked potluck, old friends, family, professional and regular staff dropping in, and eventually, great giggles from Kathy as she whirled in her dancing wheelchair: The party at Kathy's house started outside on the covered patio, but came inside as breezes blew cooler.

Twenty years of familyhood at Elm Hall is something to be celebrated! Though a few residents have moved to other houses, the manager who opened the house and one AC-3 ("attendant counselor" supervisor) along with 3 of the original residents are still there. Elm has been home especially to medically fragile people (with dd); and so it is not surprising that in that time, several have "gone on to watch over us," as" Manager Mom" put it. (I am calling her "Manager Mom" for this post because I have not asked permission to use her name; and though she does manage the staff and their care of residents, her role is very much that of "Mom." She shows the love of a good mom to residents and staff, alike. Somehow, everybody gets what they need. )

Today, for the first time, I heard about the preparation for Elm's opening 20 years ago. From Manager Mom's speech: "One challenge was: How do you find staff who want to work in an area with total care, fragile people, lots of lifting and all wheelchair?" As it turned out, just enough people really wanted to work under those conditions, and they were just the right staff for the job!

This was the beginning of a housing change at Fircrest; and Elm had just been remodeled to accommodate half as many residents as Fircrest had formerly housed together. The conversion to nursing facility would follow soon after. A careful selection process had occurred so that the right folks would be transferring to the new house. They were to move all-together; so, for 3 months, the entire new staff worked side-by-side with their usual caregivers in order "to learn all of their idiosyncrasies, what they needed and liked in their daily routines as well as how to meet all of their medical needs." This also gave the residents time to get to know and trust their new caregivers before changing environments.

When Kathy moved there from another house on campus about 8 years ago, staff were oriented to her very extensive needs in a similar way. Manager Mom first learned every little nuance of her care, wrote procedures and trained staff, often one-on-one, so that Kathy absolutely got what she needed in the way that she liked and needed it. She is loved there and she feels it. She has been truly blessed to have had the same, wonderful manager-habilitation professional (HPA) and direct caregiver team for all of that time. A few have left and a few have taken their places, but turnover with it's accompanying disorientation has been minimal.

Just one parting thought. As a nurse, I know that having family around can be stressful, especially if they are like I am, wanting everything to be perfect for their loved one. On the other hand, as family, it was essential to my peace of mind to be there on a daily basis to be sure the details of Kathy's needs were attended to in the right way. Manager Mom handled me and my daily requests wonderfully, almost always accommodating them and/or helping me understand why not if she could not meet one. Problems never went unsolved. When, eventually, I did not come as often, I had confidence that Kathy was in the hands of people who knew the importance of each task and, truly caring about her as well as feeling supported, themselves, would not short-change her in their hurry to accommodate all the other, equally important needs of everyone else in their care.

As you might have guessed, I am extraordinarily grateful.
Saskia

Wednesday, July 14, 2010

Where are the Parents?

This essay is an honest portrail of life of a parent with a special needs child - read this and try not to cry.



Where Are the Parents?
By Sue Stuyvesant, Parent

Hey everyone. For those of you who don't know me (I'm only an occasional poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder -- and CUTE! OK, now for the reason I'm posting.

To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?" I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around.............

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive!

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.

Sue passed away in October 2003. Michelle passed away a week before she was to turn 18 in September 2005.

Advocacy Concerns

This is an abbreviated version of an open letter to people who oppose inclusion of Residential Habilitation Centers (RHCs) in the continuum of services for our family and community members who have disabilities. I felt the need to write it after receiving an extremely misleading Action Alert opposing HR 1255 (HR1255 provides a process by which parents & guardians, on behalf of their children/wards, may opt out of class action lawsuits with which they disagree.) Also, I found the documentation they provided in response to my questions to misrepresent the Supreme Court Olmstead Decision. Actually, "Olmstead" does not say that anybody is required to live in a specific place. Instead it affirms the right of an individual to live in the setting that best suits him/her - be it a private home, group home, institution. In so doing, it affirms the role of institutions within a full continuum of care.

I respect the energy and commitment that you all have to your causes. What I don’t understand is how, as strong advocates, (personal and representatives of public agencies) , you can work to deny or diminish services to people with such severe and complex needs within the DD population. I could never envision closing RHCs because I see the necessity for their existence. If you actually went, toured, met and spoke with residents, family members and guardians, you would see that each RHC is a community as well as the community of choice and safety for many people. I believe you would come away recognizing their critical role in our community.

Trying to take this choice away appears to dismiss their residents as not worthy of being safe. I saw this even before our son was in need of the services. When he was eleven, I would not have considered institutional placement for him but I would not have cut that option off for those who needed it. I realize that there is a wide variation of needs and just because one person with DD does not need those services, it does not mean that no person with DD might need them.

As our children age and change, different issues arise. As a parent who has lived through it, I can say that a dual diagnosis changes the whole scenario of needs. Care and supervision for safety becomes extremely complex, demanding and person intensive.

The estimate of the incidence dual diagnosis, (dual diagnosis is developmental disability and a mental illness diagnosis) is between 30-50%. (NADD – An association for persons with developmental disabilities and mental health needs www.thenadd.org). Often in speaking and advocating for people with DD one forgets about this extremely extra complex group of people.

Our son is very active in community events both inside and outside of the RHC. He is a well known participant in the Seattle Parks and Recreation Specialized Program – both the Saturday Activities and Day Camp. He participates in neighborhood celebrations and concerts, attends church every week and many other activities.


I invite you to join me on an RHC tour, to meet him and learn why an RHC is the home of choice for him and others with such complex needs that they can only be managed in an RHC community.

Please, do contact me – I’d love to have a discussion, take people on tours of Fircrest or Frances Haddon Morgan Center, introduce you to my son and talk about how we can come together to truly advocate for ALL people with disabilities.

People may contact me personally at cherylfelak@msn.com

Sunday, July 11, 2010

"Retarded" Grandparents

I have been troubled by the semantics debate. I agree it is important to be respectful, and equally important that words portray accurately what is meant, & most importantly: we all need to recognize that people who taunt others with labels are, themselves, rather intellectually, emotionally, and socially stunted; and we can't legislate against that!

I found this to be a refreshing break: humor that doesn't demean anyone. Below is a tiny chuckle: just click on the title of this post to enjoy the full laugh!

" After Christmas, a teacher asked her young pupils how they spent their holiday away from school." One child described his visit with his grandparents:
"My Grandma says that Grandpa worked all his life to earn his retardment and says I should work hard so I can be retarded someday too." " They used to live in a big brick house but Grandpa got retarded and they moved to Batemans Bay where everyone lives in nice little houses, and so they don't have to mow the grass anymore!"

Wednesday, July 7, 2010

Are DD Growing In Numbers?

I find the following statistics staggering!

"One out of 10 children born today is diagnosed with a developmental disability including autism, cerebral palsy, mental retardation, and Prader Willi. One out of every 100 children is diagnosed with autism. Eight out of 10 families raising a special needs child is experiencing divorce, and a disabled child is three times more likely to experience child abuse than a child without special needs." by Alan Duretz, July 6, 2010, writing in the Sun-Sentinal about groundbreaking for JAFCO Respite and Family Resource Center for Children with Developmental Disabilities. (Just click on the title to read the full article.)

Are the numbers of people with dd increasing or have there always been so many and society's awareness expanding?

I am heartened to read creative approaches to meeting such need.
The JAFCO plan sounds comprehensive. Is their approach unique?

Do you have related experience? as family who has used such services or as provider or team member who have offered them? I am so interested to hear what is being offered: what is successful and why, not successful and why, too.


Thursday, July 1, 2010

Kathy's CARE Evaluation


OK, I admit it; I think Wa state should be utilizing it's resources differently to maximize the services to people with dd in "the community" while retaining RHC (residential developmental center) services options. So, I found cause for optimism in the long-overdue budget proviso passed by the legislature, this year. Had the governor not vetoed it, it would have funded a comprehensive study of the needs and costs for community services, statewide, providing answers to cost questions that never have been answered and without which, data for planning is skewed. Before running out of ink, she managed to effect, instead, a requirement for assessment of all people who live in RHCs...just in case any might want to move out of their RHC homes to "the community?"

Today, I learned that this measure cost the state no money because the evaluations are being done by case workers, already on the payroll, who have been been assigned evaluation duties in addition to responsibilities for people on their case loads, already. Who knew they would have such "surplus" time on their hands? Or is everyone else, simply on hold awaiting completion of these evaluations?

DDD's CARE tool is the medium of evaluation. Several years ago, assessments called "CARE" assessments were performed on RHC residents. They wasted time and tax dollars, as the tool was designed for a "typically-abled" (or disabled) geriatric population, not for people with complicated physical and intellectual developmental disabilities. So I was less than thrilled to learn it was to be the tool of choice, again.

However, I was in for a pleasant surprise at my sister, Kathy's evaluation. The tool had been simplified and updated and the caseworker who administered it was genuinely interested in reflecting accurately the time and resources that would be needed if Kathy were to live in "the community." The 2 hours that had been allotted for the job proved inadequate, in part because my lack of experience with the tool caused me difficulty in boiling down the answers to simple terms for the sake of the tool. Our evaluator, though, was masterful. He listened carefully to considerations, and summarized them accurately; and our HPA (Habilitation Plan Administrator had an excellent grasp of the tool as well as Kathy's condition and care needs. The evaluator made notes in order to explain the numerical values that were supposed to reflect level of care, frequency and time required for each care task.

Having written that the allotted 2 hours was not enough, I realize that, had I not been there, raising my questions, which sometimes caused more in-depth consideration, it might have been effected in less time, but that might not have been to Kathy's advantage. Given the immense time pressures that HPAs and AC (attendent counselor) managers are under due to budget cutbacks, I think my presence as Kathy's guardian/sister was very worthwhile. My focus was on making the hypothetical community placement include all the considerations that would have to be accommodated. As guardian/family, with no bureaucratic time pressure, I could help keep the resulting hypothetical "snapshot" realistic. This is not to say that in my absence, Kathy's HPA would have slighted her in any way; he never would; He is wonderful and I am always grateful for his support of her and generosity with time, no matter how pressed he is. But a parent/guardian has the right to cause as much time as is required to consider all facets of a problem; whereas an employee must do his/her best to accommodate whatever time constraints and work load his employers impose. The upshot? I am glad I attended and recommend that other parent/guardians do so, too.

We were asked to look at what would be needed in order to effect each aspect of Kathy's care if she were to live in "the community." The questions and the HPA's answers, knowledge of the details and reasons behind each aspect of her care plan helped me realize that what the staff do with efficiency at Fircrest would take longer and be more difficult (if even possible) in a "community" environment where resources like home, transportation, medical services and the array of therapies, as well as her adult training (work) program, would not be so easily accessible all on one campus .

Toward the end, the question of goals arose. Being a little brain-dead by then, I had to refer him to Kathy's IHP, (Individual Habilitation Plan, a required comprehensive assessment and plan document produced by her Fircrest inter-disciplinary team (IDT). As IDT members, we as parents/guardians may take for granted the thoroughness of IHPs, but, for those who aren't familiar with IHPs, they cover every facet of the resident's condition, as well as care and support needs, described in detail, with a goal named for each and a plan for implementing it. Parent/guardians are part of the IDT and, as such, help create the plans. I was extremely pleased with the obvious positive reception of the IHP goals by Kathy's evaluator. Having looked through it, he was able to recommend that the goals established by the team continue to be supported at Fircrest.

One other thing that I think was important, though it may not always be, depending on how obvious the disabilities of the resident are: We had Kathy in with us for the beginning of the session so the evaluator could get an idea of how really disabled she is. Then, toward the end, she was back, this time in the area, but not as part of the session. From a distance, it happened that he could observe the rather substantial one-to-one support being provided for her self-feeding, and, still later, some therapeutic play designed to support arm/hand range of motion and coordination.

I hope this description will help others whose loved-ones have yet to be evaluated. In particular, I hope it will inspire consideration of the increments of each task involved in providing appropriate support. It was tempting to look at the general type of task and ballpark a numerical answer, but often when we broke down what was involved, it became obvious that a lot more time would be required. This recognition helps prevent assumptions that could lead to underestimation of the resident's support requirements.

Realistically, I do not think the same picture could have been painted in the allotted 2 hours; and I am grateful that we were allowed the time needed to think through the details of the questions.

Please feel free to comment. Whatever your thoughts, ideas, experience or suggestions, please share. I can post it for you or you can use a comment box at the end of this post.
Saskia












Friday, June 25, 2010

Tennessee Judge Rules for Families

Guardian/Conservator Authority
To Choose ICF/MR or "community" home

Excerpts from VOR Weekly E-Update:
"As families prepare for the closure of the Clover Bottom Developmental Center, on May 28, a court ruled in favor of the right (of) individuals and legal guardians to choose another ICF/MR (deemed a “congregate” setting), even when professionals have determined the individuals could be provided (for) in a more integrated setting. "

"The question before the federal district court in Tennessee was whether the Americans with Disabilities Act (ADA) precluded Clover Bottom residents, or their legal guardians, from choosing “congregate care.”

Citing Olmstead and Medicaid law, the Court ruled in favor of the state and families, recognizing the freedom to choose a large ICF/MR placement even if the individual could be appropriately served in a more integrated setting.

“The intersection of citizen choice and the ADA was addressed by the Supreme Court in Olmstead v. L.C.,” wrote the court. “[T]here is no federal requirement under the ADA that community-based treatment must be imposed on citizens who do not desire it.”

The Court was particularly persuaded by the brief of the Parent Guardian Association (PGA), which argued that “Conservators [and guardians] - who have the longest and most meaningful relationship with their loved ones and the greatest investment in their well-being - are in the best position” to weigh all benefits and risks of any placement option, and will give due consideration to the opinion of professionals."
Used by permisson of VOR.

To read the decision, go to: http://www.vor.net/get-help/legal-resources/. (Just click on this blog post's title)

What are your thoughts on the matter? Do you have experience with this dilemma? If so, would you be willing to share it? How does this work in your state? When, (if at all) is placement in the "most integrated setting" as or more important than other considerations such as proximity to needed resources, safety of environment &/or elements that make for least restrictive environment (also a part of the Olmstead ruling)?

Saskia

Monday, June 21, 2010

Untwisting The Tale: HR 1255: THE Bill


The Text

Simple, Clear & Straightforward


"A BILL
To protect the interests of each resident of intermediate care facilities for the mentally retarded in class action lawsuits on behalf of such resident.
Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. PROTECTING THE INTERESTS OF EACH RESIDENT OF INTERMEDIATE CARE FACILITIES FOR THE MENTALLY RETARDED IN CLASS ACTION LAWSUITS ON BEHALF OF SUCH RESIDENT.

(a) In General- Notwithstanding any other provision of law, no entity that receives funds from the Federal Government may use such funds to file a class action lawsuit against an intermediate care facility for the mentally retarded on behalf of any resident of such facility unless the resident (or, if there is a legal representative of the resident, such legal representative), after receiving notice of the proposed class action lawsuit, has the opportunity to elect not to have the action apply to the resident.

(b) Notices; Resident Right of Withdrawal From Lawsuit-

(1) PLAINTIFF NOTICE OF PROPOSED LAWSUIT TO FACILITY- If an entity uses funds from the Federal Government to file a class action lawsuit against an intermediate care facility for the mentally retarded on behalf of residents of such facility, the entity shall provide notice of the proposed lawsuit to the facility at least 90 days before the date of filing of the lawsuit.

(2) FACILITY NOTICE OF PROPOSED LAWSUIT TO RESIDENTS- Not later than 30 days after the date the facility receives such notice, the facility shall provide notice of the proposed lawsuit to each resident of such facility on behalf of which the lawsuit is proposed to be filed and, if there is a legal representative of such a resident, to such representative.

(3) RESIDENT RIGHT TO WITHDRAW FROM LAWSUIT- A resident (or, if there is a legal representative of such a resident, the legal representative) may elect not to be part of such a proposed lawsuit by filing a notice of such decision with the facility within 60 days of the date the facility notifies the resident or legal representative of the proposed class lawsuit.

(c) Legal Representative Defined- In this section, the term `legal representative' means, with respect to a resident of an intermediate care facility for the mentally retarded, an individual who has been appointed under State law to be a legal guardian, conservator, or other representative for the resident and who is authorized under law to make decisions on behalf of the resident with respect to care and treatment of the resident in the facility.

(d) Effective Date- This section shall apply to lawsuits filed after the date of the enactment of this Act.
END"

Note: For background, visit: http://vor.net/legislative-voice/legislation/hr1255?q= (To go there, just click on title of this post!)

Thanks to Terri Anderson, Wa. State VOR rep for providing the text.
Saskia

Friday, June 18, 2010

Untwisting The Tale: HR 1255: THE TRUTH

As promised, the post, below, is by guest blogger, Tamie Hopp of the VOR. You will see that HR1255 is in deed needed, that it provides critical rights and in no way removes or diminishes any rights.

Don't miss the comments following Tamie's explanation, especially the letter by Terri Anderson, Washington State's representative to VOR.
Saskia

Untwisting The Tale: HR 1255: THE TRUTH

Thank you for this post and for your effort to set the record straight about H.R. 1255.

It is simply wrong to say that H.R. 1255 restricts choice. Instead, if passed, H.R. 1255 would restore the rights of individuals and their legal guardians to choose their attorneys and not be forced into lawsuits that threaten the very existence of their homes.

Specifically H.R. 1255 would provide residents of Medicaid licensed ICFs/MR, and where judicially appointed, their legal guardians, with the right to be notified of lawsuits involving their homes before they are filed, and provide a time limited opportunity to opt out of the lawsuit (or do nothing and join in). Following a 90 day period the lawsuit could go forward on behalf of a consenting class.

For the past 15 years, the lawsuits that would be impacted by H.R. 1255 have been filed ONLY to downsize and close facilities; conditions of care have NOT been at issue in these lawsuits.

Visit http://www.vor.net if you have any additional questions. (To go there, click above on the post's title.)

Please contact your Representatives in Congress to co-sponsor this bill.

Thank you!

Thursday, June 17, 2010

Untwisting The Tale: Getting To The Truth

HR 1255
PROTECTING RESIDENTIAL CENTER RESIDENTS

Yesterday, ARC of Wa. distributed a call-to-action regarding HR1255, a bill which I have been following and have understood to be protective of people with dd who need and reside in residential centers. In Washington State we call them RHCs (residential habilitation centers.) Since the thrust of the message was exactly opposite of my understanding, I contacted Tamie Hopp of VOR, a national advocacy group that advocates for people with dd, no matter where they live. The ARC of Wa call-to-action turned out to contain considerable error. For clarification, I have invited Tamie to write as a guest author; but first, here is the ARC's error-filled message:

"H.R. 1255 is a Congressional House bill that would restrict the rights of individuals with disabilities to have the choice of where they want to live respected, to live free from abuse and neglect, and to live and receive services and supports in the most integrated setting possible. Individuals with all types of disabilities and health conditions are successfully living in their local community on their own or with family or friends."

I look forward to seeing your response. Just in case Tamie doesn't think to mention it, one response that you could have that would be very helpful and positive would be to ask your federal congressional representatives to sign on as sponsors of the bill.

Saskia

Tuesday, June 15, 2010

WHAT DOES INCLUSION MEAN?

The word," inclusion" is coming up a lot, lately, related to people with dd.
As usual, points of view are varied. Here are two:

Heather N. wrote, asking that Developmental Disabilities Exchange feature the "community"-based services of the business her PR company promotes. Since the purpose of this blog is dialogue and mutual understanding, rather than promotional, it doesn't seem appropriate to name the business, here. However, I do find that her description of their philosophy pretty much sums up how many people have described their idea of what "inclusion" means. Here are excerpts from her letter along with a quote from the website of the company she is promoting.

Hi Saskia,
My name is Heather_, and I work with M___, a non-profit aimed at providing housing and support for people with intellectual and developmental disabilities." "It believes that individuals with intellectual and developmental disabilities deserve the opportunity to live a quality life, receive individualized services and socialize with family and friends in or near their home communities."

"Like many of the facilities you have written about, M____ gains most of its funds from Medicare with another 10 percent coming from private donations." , "we’re trying to raise $25,000 to help provide individuals with disabilities homes, jobs and a better quality of life."

From the company's website: "We provide thousands of Americans with intellectual disabilities complete care — everything from homes and clothing, to meaningful work and the pursuit of personal happiness."

Here is another's perspective. Responding to my question about whether or not "inclusion," applies to residents of state-run residential centers, Isadora Arielle, wrote about her son's experience:

Hi Saskia,
My son, Neil, is now 18 and has been living at FHMC
( a State-run residential habilitation center in Bremerton Washington*) for 3 years. Before that, we did the single parent, only child thing, with Neil attending a special ed program in the local schools. In the public schools, some parents pushed for full inclusion with the idea that autistic kids and others in the special ed program would be included in regular classrooms with a 1:1 aide, and participate in all the usual school classes and activities, just like all the mainstream kids. Unfortunately, this is another idea (like "community") that sounds good on the surface---equality for all--- but doesn't work out so well for people like my son. So for me, even though "inclusion" and "community" seem to be lofty ideals, in my opinion they serve to enforce a level of conformity that isn't right for everyone.

I believe autistic, and other developmentally disabled people, who are wired to totally ignore the norms of our society, and care not a whit for what anyone else thinks, are actually great teachers for all of us. Instead of trying to get these beautiful, unique souls to come down to earth and live "normal" lives, we should be striving to live by their examples, according to who we are, as individuals. Promoting choice and honoring, even celebrating, our differences and preferences. Not trying to stuff everyone into neatly labeled boxes.

FHMC provides my son with plenty of inclusive, community activities, and a level of independence that far exceeds what can be provided in a community residential setting. Neil likes having more people around, even when he doesn't feel like interacting with them directly. He has more room to move indoors and outdoors, within the space he calls "home." So yes, I think RHC residents are being included in their communities, and again, its a matter of maintaining choice, rather than limiting choice to a narrow definition.

That's my opinion.
Thanks for asking, Saskia
Isadora Arielle



What do you think about what Heather and Isadora have written? What does "Inclusion" mean to you? Please share your experience &/or perspective . (To open the comment box, below, just click on "comments" and then, start writing; or paste in what you have written & copied from a separate page....or send me your writing and I will post it for you.)
Saskia

Friday, June 4, 2010

Therapeutic Gardens

Align Left


Gardens are magical - that's my take on them. I have enjoyed gardening both for my relaxation but also to interact with our son. The garden offers many topics of conversation - from the weeds to the scents of the herbs to birds chirping to bees nesting. We have followed flowers from seeds to gorgeous blooms and grown vegetables and berries. The garden offers education in so many aspects of life - there are endless opportunities in the garden to use for education and therapy.

I have wanted to enroll in the Therapeutic Garden certificate program through the UW Continuing Education but do not have the funds or time right now - it's on the horizon of things to do though. I browsed through their site today and came across this video about an upcoming therapeutic garden. This is such a wonderful plan. It is so true that our disabled family members need a secured area to go outside and enjoy nature.

There is a lovely garden on the grounds of Fircrest. I have attached a couple of links to information regarding that garden. We love to go there to visit and walk the garden. We love how the planters are built so that people can garden from wheelchairs or waist height. The water is such a great addition to the garden too.

I know from our small garden how much enjoyment that our son gets from it. He knows where each herb is planted, where to get berries, where his pumpkins, cucumbers and tomatoes grow and loves the various colors of the flowers. We've arranged various sitting areas in the gardens for him from which he can talk to me while I'm out there too.

Gardens are magical!


Articles on Therapeutic Garden at Fircrest: http://larch.be.washington.edu/features/design_build/11505-L1.pdf

Short video on planned garden at Washington Soldiers Home: http://pce.uw.edu/basic.aspx?id=4392

Wednesday, June 2, 2010

OLDER IMACS FOR ASSISTIVE TECHNOLOGY

501-c3 COMPUTER DONATIONS NEEDED
(IRS deductible / Friends of Fircrest )

Hi Saskia
I am making a request on behalf of the Fircrest Assistive Technology Clinic for donations of computers for people who live at Fircrest School in Shoreline Washington. Almost all homes have at least one Mac for residents to use. Some of these are extremely old and failing. At this time we are requesting help in finding ‘newer’ old Macs.

Specifically we need iMacs with "OS-9" operating system, built in speakers and CD drive that are operational, & a working USB port + keyboard and mouse.

The reason we are requesting older Macs is because the software we have is too old to operate on OS-10 operating system. To replace the special needs software, which is very old would be very expensive & funding is not available.

Thank you for all your efforts for the people who live at Fircrest.

Kathleen(Kathy) M. Smith MSPA
Speech Language Pathologist
Fircrest School
(206) 361-3163
email: smithk@dshs.wa.gov

Note from Saskia: Assistive Technology uses Macs to help residents with a range of needs. They are necessary as well as a special godsend to some whose lack of abilities is extreme. Your donation would make an enormous contribution to their wellbeing.

If you have a tour of Fircrest planned, I recommend that you ask in advance to see the PEP (personal empowerment programs) as part of your tour.

(IRS tax deductible: 501-c3 donations/ Friends of Fircrest )

Saturday, May 29, 2010

Autistic Boy Arrested After Confrontation With Officer - Sacramento News Story - KCRA Sacramento

Autistic Boy Arrested After Confrontation With Officer - Sacramento News Story - KCRA Sacramento

This story brings tears to my eyes and fury to my soul - I think about children that I know who have been unjustly arrested and treated like criminals due to their disabilities. This is what our crisis teams look like sometimes. Even upon discharge from the hospital, we were told there was nothing else they could do and no where to send our son. The suggestion from DDD and hospital staff was to take him home and call the police if we needed assistance!

I know that this was told to us because they had nothing else to tell us - there was no place for him to go and they were right, the hospital wasn't helping. There were many tears in the room at that discharge meeting and not just mine. Everyone felt terrible with their hands tied and no resources available. Several of the members called me that night, still in tears about what had not happened. It's a tragedy and I'm fired up to change things.

We need to be advocates for real change for the benefit of our family members - not sugar coating and patting the backs of services already in place. We need to look beyond what we have.

Tuesday, May 18, 2010

ActionDD team for NAMIWalk




NAMIWalk - Seattle, WA

ActionDD formed a team to walk in the fundraiser for NAMI to help bring awareness to the issues that many of our family members face - being dually diagnosed with both a developmental disability and mental illness.

NADD, an association for persons with developmental disabilities and mental health needs, is an organization that I recently joined to gather more information. As you can see, this population is not a small segment of the whole DD population and really needs to be advocated for.

Mental Health Aspects of Intellectual and Developmental Disabilities:

"Persons with a dual diagnosis can be found at all ages and levels of intellectual and adaptive functioning. Estimates of the frequency of dual diagnosis vary widely, however, many professionals have adopted the estimate that 30-35% of all persons with intellectual or developmental disabilities have a psychiatric disorder. The full range of psychopathology that exists in the general population also can co-exist in persons who have intellectual or developmental disabilities.

The co-existence of intellectual or developmental disabilities and a psychiatric disorder can have serious effects on the person's daily functioning by interfering with educational and vocational activities, by jeopardizing residential placements, and by disrupting family and peer relationships. In short, the presence of behavioral and emotional problems can greatly reduce the quality of life of persons with intellectual or developmental disabilities. It is thus imperative that accurate diagnosis and appropriate treatment be obtained in a timely manner."











Monday, May 17, 2010

Special Need Subdivisions

I found this article on the ActionDD.org website. This looks absolutely terrific - it's things like this that can happen when people dream!



HOUSING

Families seek approval of special-needs subdivisions

A bill that would allow subdivisions catering to the developmentally disabled raises questions on how best to integrate those with special needs into society.

HERALD/TIMES TALLAHASSEE BUREAU

Parents of developmentally disabled children from Pasco, Leon and Broward counties had an idea they thought would help their kids: create new subdivisions that would serve as safe havens for special needs people to live, eat, dine and play.

But an existing law prevents special-needs homes from being established within 1,000 feet of each other, so the parents began lobbying lawmakers to rescind it. The parents hope to clear the way for a cluster of communities catering to those with autism, Down syndrome, cerebral palsy and other disabilities.

AWAITING HOUSE VOTE

A bill to rescind the 1,000-foot law has passed in the Senate and is awaiting a vote in the House. And it is triggering discussion of a larger question that advocates for the disabled have struggled with for decades: How best to integrate those with special needs into society? Some warn that creating separate communities only ends up segregating those who are different.

``In our society, we call places like this institutions,'' said Kingsley Ross, who represents Sunrise community, a nonprofit organization catering to the developmentally disabled and the elderly. ``People with developmental disabilities have to be in contact with good models of behavior. If you surround them with people that don't have normal types of behavior, what we are going to see is more people with bad behavior.''

Others argue that the communities would give those with special needs a chance to be with people and families like them. Living among those who don't understand their situation sometimes leads to the disabled to being ostracized, harassed or assaulted, said Bill Sammons, president of the nonprofit group, Noah's Ark, in Central Florida.

Sammons, the father of a 24-year-old with autism, has seen the difficulties of his boy, Drew, as he tries to stay safe.

``He can name, maybe, every road in Florida,'' Sammons said. ``But then he won't look both ways crossing the street.''

About four years ago, Noah's Ark won approval from the city of Lakeland to build a 56-acre community that would be home to 200 special-needs residents and 40 family members.

``He would have more freedom in the gated community,'' Sammons said.

The subdivision, dubbed Noah's Landing, would have a communal dining room for socializing and pedestrian walkways between houses, so residents could cross the street without fear. It would be a mix of single-family homes, apartment units and group homes.

GROUP HOMES

The group homes were the flashpoint. Afraid that homes catering to addicts and the developmentally delayed would drive down property values, the state Legislature ruled that the homes could not be within 1,000 feet of one another.

Rep. Kelli Stargel, R-Lakeland, introduced the new legislation which would allow local governments to make exceptions for group homes to be within 1,000 feet of each other. The lawmaker had learned there were other communities planned from Duval to Broward counties that would cater to the developmentally disabled and might have group homes in them.

``This is trying to establish a neighborhood, if you will, that would be conducive to people who are developmentally disabled, similar to a 55-plus community,'' Stargel said.

Robert Samuels can be reached at rsamuels@MiamiHerald.com.



Read more: http://www.miamiherald.com/2010/04/27/1599506/families-seek-approval-of-special.html#ixzz0oEUZj7EN

MOVIN' FOR MONEY

by
Peanut Butter & Jelly

As I watched his shoulders smoothly roll back and forth, his arms slicing through the water, his strong legs kicking behind with hardly a splash, I remembered that my son was always more graceful in water than he was on land. As a toddler he crashed his way through life with more than his fair share of thumps and bumps; a "toe runner" the neurologist called him, and then something about it being a developmental indicator that had something to do with delays, and then there was this low muscle tone thing, which was really hard to understand because this was the most active two-year-old on the planet. A whirling dirvish, my grandmother called him. He would buzz around a room with such high level energy that his fine blond hair would be sweat-soaked and stuck to his head. Then we discovered the pool. There was something about the water resistance and being horizontal that set his "body map" right. Maybe it was like a return to the uterus, you think? Whatever it was and is, if you watch him walk, you can tell there is something "different" about him. But when you see him swim, you see he is all right with the world.

So I watched him, and the people he has grown up with for the last twenty five years, as they swam laps at the Meadowbrook Pool to raise money for Seattle Parks Specialized Recreation Programs. Most of these people, like my son, are completely at home in the water, and in their own skin, their own joy, as they experience the freedom from gravity and the joy of play on purpose. There is no competition here. Every participant has raised money by pledging to swim a certain number of laps and getting friends and family members to sponsor them. I am envious that nobody cares what they look like in their bathing suit, nobody has body hang-ups, nobody cares how fast they swam a lap or if they rested between laps or even in the middle of a lap. It so isn't the point. And it so makes me wonder if, in our competitive, hurried, false-beauty conscious world we do get the point.

The participants who didn't swim walked laps around the track, or rolled around it in their wheelchairs. The high school marching band gave a great performance, and the laid-back atmosphere of the day was a reminder that we might all slow down once in awhile and lap up life for all the right reasons.

peanut butter & jelly

It is not too late to contact Seattle City Council Members about retention of the Specialized Programs in the Seattle Parks Department budget. They won't know how important the programs are unless we tell them.
Saskia

Tuesday, May 11, 2010

Seattle Parks and Recreation Specialized Programs

I attended the Seattle City Council Finance and Budget Committee on May 4, 2010. I, too, as the previous woman who posted about this meeting, was amazed at the number of people in attendance. I believe there were well over 600 people crammed into the cafeteria and there was an "overflow" room next door.

I attended this meeting (my first ever) to support our Seattle Parks and Recreation Specialized Programs. This program has been instrumental in our son's life. I am always amazed at the interesting and fun activities that they undertake. Our son participates in the Saturday Activity program and the Summer Day Camps at Woodland Park. These two programs are just a snippet of the many offerings to choose from. There are many exciting programs for both children and adults.

I can not say enough wonderful comments about this program - there is nothing else like it. They have never said "we can't take him." No other program is available that will work with the various issues that our son deals with. These programs are for children aged 4-21. It took us until Thomas was about 9 for me to feel comfortable sending him - not because of them but because of me. I had nothing to fear - he has attended almost every Saturday activity and day camp now for 6 years.

Even now with Thomas living at Frances Haddon Morgan Center, we pick him up on Fridays and he attends the Saturday program. He grabs the pamphlet the day it comes in the mail and memorizes the whole schedule. He has had so many exciting trips that he would never have been able to go on if it was not for these wonderful people! This is just a sampling of the trips that they have taken: Oaktree Movie Theater to see a movie, Outback Kangaroo Farm, M-Bar-C Ranch on Whidbey Island, Storybook Theatre, Sky High Sports, Boehmes Chocolate Tour and XXX Rootbeer, Point Defiance Zoo and Safeco Field.

Not only are these great activities but Thomas also has real friends that he has met through the parks department. It is truly a community event for our family members! In addition to the benefits for Thomas, our family has also benefited - it has been wonderful respite time for us.


This Sunday, May 16, is the annual "Moving for Money" fundraiser for the Specialized Programs. Please consider supporting this program to enable our family members to continue being involved these precious activities. Also, please invite your children's friends to also participate - you won't regret it!

I have attached a link to the Spring Catalog of activities for Adults and Children. There is also link to the video of the Seattle City Council Budget and Finance meeting. It lasted several hours but at about time 21:00 and about 51:00, you can see member of our community speaking in support of the Specialized Programs.

Thank You


Cheryl Felak Joins Developmental Disabilites Exchange

Today, I am delighted to introduce Cheryl Felak as a new author of Developmental Disabilities Exchange!

Cheryl has been a contributing reader since the blog's beginning in January. I have been inspired by her seemingly tireless energy and enthusiasm as well as her thirst for answers!

Cheryl comes to us with rich experience and I know readers will be eager to know about her; but I would like to leave it to her to tell about herself.

Welcome aboard, Cheryl.

Sunday, May 9, 2010

What's A Mom & Her Boy To Do?

WHY NOT TO CUT THE SEATTLE PARKS BUDGET
A Personal Story
By
Peanut Butter 'n Jelly

You have to understand that it would ordinarily take an Act of Congress and a College Football Team to wrestle my son into a suit and tie, but after twenty years of participation in Seattle Parks and Recreation's Specialized Programs, when someone handed him an invitation to a Public Hearing that involved possible budget cuts to his beloved Wednesday Night Starlight Socials, Monday cooking classes, Saturday Travels, and some pools might be closed (gasp! we've already lost the one at Fircrest), he was HOT on it. He brought me the flyer, waving it in the air, unable to speak, reverting to his sign language, and I had to remember back to the days before he learned to speak when these opportunities to be out and integrated were the few chances he had to be with his "Buds", his "Peeps". And the few hours I had to be either with other parents, or to have a few hours for myself.

But yesterday morning The Boy got up on his own, showered and shaved, like he would usually do only for church on Sunday, and suited up for this opportunity to tell the City of Seattle how important Parks Special Programs are to him. We had talked about it the night before, we had each written down our speeches on 3X5 index cards, we had made a sign with a big AX that said Don't Cut Parks Spec. Prog, so we could wave it from the audience.

Now, we have attended many Shoreline City Council Meetings, mind you, and signed up to speak, so we thought we were prepared. But this was Seattle, and we had been misinformed about the purpose of this meeting; it wasn't just about the Parks budget, it was about everything from Pea Patches to Seattle Center. There was a guy there with a sign that protested ticketing parked cars, saying, "My car is my home".

And the biggest problem was that this was the biggest crowd we had ever encountered! After driving around for twenty minutes following flourescent-yellow-vested parking attendants, we arrived at a cacophonous cafeteria filled with HUNDREDS of milling people, somewhat grouped by signs indicating their interest, but mostly making it abundantly clear that if you had a snowball's chance in hell of a spot at the podium it wouldn't happen before midnite in Hawaii...

My son was already shaking. It was almost 5:30 p.m. and he had dressed for this event at 5:50 a.m. He had written his speech the night before. He was pressed by a closely bumping crowd of people around him, all talking at once. Like having your radio station tuned just slightly off and nothing comes in clearly, everything was just a buzz, a cafeteria with venders cranking out lattes, and the smells, and there was no seating left and no-place-outside-and-it's-raining...and here comes the seizure, I just know it, I see it dancing in his eyes, I've lived with it since he was ten years old, so I take his arm, wipe the drool from his mouth with my sleeve, he can still walk, I know he can...

I take the speech notes from his hand and drop them in the "Written Comments" box as we pass by the sign up table...

This kind of seizure is called Partial/Complex, and he's only halfway here, but there is a lot of facial twitching and salivation and it looks way worse than it is. Anyway, what I believe is that he is somewhere else when that happens, so I'm in charge of his body, so I need to take it home, so that's what I did.

But the next day, my son got on his computer and looked up on King 5 News (because he saw them there at the hearing) to see what had happened. He said that mostly it was businesses saying don't raise our taxes, but that some of his friends said please don't close our pools.

So there it is then...
Peanut Butter & Jelly

PS: The Boy will be swimming laps at Movin' for Money, Sunday, May 16th - 1-4 p.m. at the Meadowbrook Pool (10515 35th Ave N.E.) to raise $$$ for Specialized Programs for Seattle Parks.

You may be swimming or walking a similar path, eh?

Note by Saskia: If not for this description, most of us, who do not have loved ones in the Parks programs, would have no idea how important they are as activity resources for people with DD! There may still be a small window of time to add your voice to those of this Mom and her boy. I encourage you not to hold back. For contact info to support continuance of the parks programs click on the title of this post or go to: www.seattle.gov/html/feedback.htm.

Saturday, May 1, 2010

Life & Work of Dr. Stanley Greenspan

Autism & DD Pioneer
Speaking from the points of view of a sibling who once was part of her sister's caregiving family-team, current guardian, nurse, and former developmental therapist, I fully endorse the basic maxim that learning must wait on maturation. What this means is that a person cannot learn something until his/her brain-neuro-muscular system is sufficiently mature to support the learning. With developmental disabilities, the challenge is: how best to support the brain-neuro-muscular maturation. And, as anyone interested enough to be reading this blog already knows, no two individuals are alike, so the approach to each must be responsive to the cues and clues provided by the person receiving the work.

Here is an excellent article honoring the life and work of Dr. Stanley Greenspan who, the article recognizes, made significant contributions to developmental work with children who have autism. I would recommend it to caregivers and family members of people with other developmental disabilities, too.

From my 61 year-old sister, Kathy's experience, I know that the article's use of the word , "children" should be generalized to "people" and the word "autism" should be generalized to include other forms of developmental disabilities.

Much of the article's description of Dr. Greenspan's methods also can be said of the Feldenkrais treatment (another approach to developmental, neuro-muscular/cognitive work) that my sister receives: Her diagnoses include cerebral palsy, cognitive delay level: 2-3years old & epilepsy. Even at her advanced age, her progress with this work has been consistent to that described in this article pertaining to children with autism. Credit must also be given to the reinforcement by her caregivers in the ICF/MR-NF where she lives and to the sensitive work of one physical therapist, in particular, who, early on in her work with Kathy, commented that she almost always sees cognitive & verbal progress in children when they are finally able to walk. It made sense to her that Kathy as an adult would be having a similar response.

Dr. Stanley Greenspan Dies,
Founder of Floortime & Developmental Approaches
To Autism Therapy

Source: AMDC Autism Examiner by Mike Frandsen April 28, 4:02

"Dr. Stanley Greenspan had a profound impact on developmental approaches to autism therapy.
At last November’s annual Interdisciplinary Council on Developmental and Learning Disorders conference in Bethesda, Maryland, Dr. Stanley Greenspan was walking and talking a little bit slower than he had in previous years. The reverence and respect that the audience had for Greenspan was palpable, and at the end of his speech, the crowd gave him a standing ovation. The people in the audience knew they were witnessing something special. 

Greenspan, the founder of Floortime and the Developmental, Individual Differences, Relationship-based model (DIR) for autism, died yesterday. 

Greenspan established the ICDL in Bethesda to advance the identification, prevention, and treatment of developmental and learning disorders. A message on ICDL’s website calls Greenspan, “the world's foremost authority on clinical work with infants and young children with developmental and emotional problems. His work continues to guide parents, professionals and researchers all over the world.”

 To read the full article, click on the title of this post. Readers comments beneath the article are also compelling.
Saskia

Thursday, April 29, 2010

KCDDD 3 Year Draft Plan

Parent Comments
by
Cheryl Felak

(Tomorrow, end of business, is the deadline for written public comment on the proposed King County DDD 3 year plan. Have you written & sent your input? If not, your voice is important!
For access to the draft plan and submission info, click on this post's title.)

Cheryl is a parent whose son with dd lived at home until it recently became too difficult for everyone concerned. She reports that he is now thriving in an RHC (residential habilitation center). Here are her comments:

Improve after-school programs for disabled children - maybe right at the school. Needing to be home every afternoon at 2:30 to get my child off the bus made it impossible for me to work. Since our son is not independent in toileting, many of the afterschool programs, ie: Boys and Girls Clubs, would not take him. Respite providers generally were not available after school – many of them work in the schools and can not get to a respite job in time to get a child off the bus.


• Why are our public monies going to agencies that do not support the needs and choices of ALL disabled? For instance, the Arc of King County is adamant in the rapid closure of the Residential Habilitation Centers. These centers are indeed communities and they are the best option for many of our disabled family members. I would like to see our money spent on promoting a continuum of care and realizing that each individual has specific needs that cannot always be accommodated by a system that does not have the continuum of services in place.


• KCDD Mission – what is the definition of “community life” here? Community is a buzz word that has taken on the meaning of “non-institution”. People need to realize that living in an institution is also a community and one can lead a full life in that setting also.

• Natural Supports – these are much easier to utilize when the child is young. Once the child is a teenager and needs total assist for personal care the supports tend to fall away. This may be more of a problem with those DD children who also have a mental illness. Friends and family members become afraid of the person and are unable to help. This is also probably more of an issue with the need for pervasive support intensity.


• Waiver – make it easier for the client to access the funds – huge waste of time, effort and money trying to find a contracted provider. If money was available to the client, could get needed durable medical equipment, personal care items for a better price and not have to pay a huge mark-up to a third party in order to acquire the needed items. A doctor’s prescription, OT recommendation, etc, should be adequate documentation that equipment is needed – why so much hassle to prove that item is needed for client?


• SOLA – states “providing instruction and support to clients” what about health and safety of the client?


• Huge issues of DD clients who also have mental illness – where do they get services? This is not an issue for behavior management – these need to be handled by coordinated team of a psychiatrist and another healthcare professional who is familiar with the issues of the DD client. Most psychiatrists are only trained in dealing with typically developed children who are mentally ill, not DD children who need total assist for activities of daily living. 


• Outreach, information and Assistance Services – Why is the Arc of King Count y the only agency that KDCCC contracts with? Again, the Arc discriminates against those who need the RHC services to remain safe and healthy – this is a biased position and in order to be an advocate, it is important to look at all alternatives that may benefit the client.


• Advocacy and Leadership Training – Again, KCDDD contracts only with the Arc of King County. “King County Parent Coalition for DD for parents and family members to advocate for a better future in the community for all individuals with DD, learn advocacy skills and network with other family members in King County.” This is a false statement. The Arc of King County does not advocate for ALL disabled. As stated previously, that organization only advocates for those that benefit from living in small, residential homes and excludes those who need the services of the RHCs.


• Seattle Parks and Recreation has been a tremendous benefit to us. Our son has gone to the Saturday activities programs and day camps for years. He absolutely loves them. He has been able to go places and do things that he would never have been able to do if it was up to us, his family, to provide that. PLEASE fund more of this program – they are the best!!!


I have a few more comments in regards to the draft of Developmental Disabilites Services. This may get a little graphic, but I would really like people to understand about the issues and how important Active Treatment is in the care of our family members.

Our son is 16 years old. He has DD/Bipolar Disorder and possibly some schizoaffective disorder. He needs total assist for all personal care. His fine motor skills are extremely poor - he can't write his name, pull up his pants, put on his shoes, etc not only due to motor skills but also due to lack of attention and visual deficits. He does not feel pain sensations.

It takes time and effort and much encouragement to get him to try to put his shoes on. Once they are on, if we don't leave and go where we are going, they will be taken off again and you have to start all over. He needs someone to constantly be aware of where he is and what he is doing to maintain his health and safety.

It took us 2 years of daily trials to get him to sit on the toilet for 1 minute. At this point we are still trying to get him to inform someone of when he needs to have a BM and have a diaper put on. So far, the only time that he succeeds with this skill is for me - at other times he is incontinent. He is very reluctant to inform caregivers of his personal needs if he is even aware of them. It takes a very intuitive caregiver to communicate with Thomas in order to understand what he needs. One needs to watch his movements carefully - this is what indicates if he might be in pain. This care takes time and focus. Without this, it becomes too easy to just do everything for him.

I'm concerned about issues with children like ours who live in a group home or SOLAs. The staffing is not adequate to provide for active treatment. Active treatment is critical in order for progression to be made. Without this part of the care provided, children with needs similar to our son's, would lose skills that they have worked so hard to attain. This would also decrease their potential to be active participants in jobs and or social activites.
Provided for posting by Cheryl Felak as provided to the King County DDD as comments on the draft 3 year proposal.

***

The notice below was first posted April 20. Tomorrow, April 30, by "close of business" is the deadline for comments. Here it is, again, for submission details as well as time and place of public meeting.

Tuesday, April 20, 2010

PUBLIC INPUT NEEDED: 3 YEAR PLAN


KING COUNTY PLAN
2010-2013 Services
For People with Developmental Disabilities
Including
Children : Birth To 3 years

Letter :
From: Campbell, Jane [mailto:Jane.Campbell@kingcounty.gov]
Sent: Monday, April 19, 2010 3:29 PM
Subject: Public Input to King County DDD 2010-2013 Plan

The King County Developmental Disabilities Division (KC DDD) has released the draft Plan for Developmental Disabilities Services for public review and comment at http://www.kingcounty.gov/healthservices/DDD/plansAndPolicies/2010-2013DDPlan.aspx .

The plan covers the period of July 1, 2010 through June 30, 2013.

The plan covers
early intervention services provided for children ages birth to three who have a developmental delay or a developmental disability,

and also

those services and supports provided to individuals with a developmental disability
who are enrolled in the Washington State Department of Social and Health Services Division of Developmental Disabilities who are living in the King County community.


King County invites and welcomes public comment on the proposed draft plan.

~ Written public comment will be received through close of business, Friday, April 30, 2010. A link is available on the DDD website so you can email your thoughts. (click on title of this article to open web page: find download of plan button + input button on right side of web page)

~ A public meeting to discuss the plan will be held by the King County Board for Developmental Disabilities

Wednesday, May 5, 2010 from 9:30 to 11:30 a.m.
Washington State DSHS Division of Developmental Disabilities
Region 4 Office,
1700 East Cherry Street,
2nd Floor Meeting Room,
Seattle.
The meeting location is wheelchair accessible.
Jane E. Campbell
Assistant Division Director
King County Developmental Disabilities Division
401 Fifth Avenue, Suite 520
Seattle, Washington 98104
206-263-9017

Monday, April 26, 2010

*********************INTERACT************

Hybrid Day Care
&
Professional Arts Center

MINNEAPOLIS
Here are excerpts from an MPP Downtownjournal article by Gregory Scott about a program that, without even trying, seems to both stretch and challenge the concept of community inclusion!

"A hybrid day care and professional arts center, Interact admits people with disabilities on a selective basis. Those accepted train professionally in performance and visual art, studying with an Interact staff made up exclusively of artists, musicians, writers and actors, all of who currently work in Minneapolis. Right now, Interact serves more than 90 clients. It is the only day care facility in the nation to offer professional opportunities to the disabled in both the visual and performing arts."

"Since the early 1980s, Calvit has been putting artists with mental illnesses, brain injuries and physical and developmental disabilities on stage, producing aggressive theater pieces that ........"

I came away from the article with mixed feelings. See what you think. To read the full article, just click on the title of this post.
Saskia

Tuesday, April 20, 2010

PUBLIC INPUT NEEDED: 3 YEAR PLAN

KING COUNTY PLAN
2010-2013 Services
For People with Developmental Disabilities
Including
Children : Birth To 3 years

Letter from:
From: Campbell, Jane [mailto:Jane.Campbell@kingcounty.gov]
Sent: Monday, April 19, 2010 3:29 PM
Subject: Public Input to King County DDD 2010-2013 Plan

The King County Developmental Disabilities Division (KC DDD) has released the draft Plan for Developmental Disabilities Services for public review and comment at http://www.kingcounty.gov/healthservices/DDD/plansAndPolicies/2010-2013DDPlan.aspx .

The plan covers the period of July 1, 2010 through June 30, 2013.

The plan covers
early intervention services provided for children ages birth to three who have a developmental delay or a developmental disability,

and also

those services and supports provided to individuals with a developmental disability
who are enrolled in the Washington State Department of Social and Health Services Division of Developmental Disabilities who are living in the King County community.


King County invites and welcomes public comment on the proposed draft plan.

~ Written public comment will be received through close of business, Friday, April 30, 2010. A link is available on the DDD website so you can email your thoughts. (click on title of this article to open web page: find download of plan button + input button on right side of web page)

~ A public meeting to discuss the plan will be held by the King County Board for Developmental Disabilities

Wednesday, May 5, 2010 from 9:30 to 11:30 a.m.
Washington State DSHS Division of Developmental Disabilities
Region 4 Office,

1700 East Cherry Street,
2nd Floor Meeting Room,

Seattle.
The meeting location is wheelchair accessible.
Jane E. Campbell
Assistant Division Director
King County Developmental Disabilities Division
401 Fifth Avenue, Suite 520
Seattle, Washington 98104
206-263-9017

Monday, April 19, 2010

Pediatric & Special Needs Dental Clinic

NEW DENTAL SERVICES
Seattle

Special needs children in the Seattle area will soon have a new option for dental care. Opening of the Washington Dental Service Early Childhood Oral Health (ECOH) clinic will soon result from collaboration between Seattle Children's Hospital and the UW School of Dentistry. September 2010 is when the service is planned to open in a former Navy Administration Building at Magnuson Park (the former Sand Point Navel Air Base).

Reported to be unique in the US, the clinic will provide educational opportunities for dental students and the possibility for development of improved models of pediatric (ages 1-21) and special needs oral health care. In addition to dental specialists, ECOH's multidisciplinary health care team includes pediatricians, psychologists, social workers and public health practitioners. Dental work under general anesthesia will be possible. Find more information at http://dental.washington.edu/departments/ped/ecoh.php . Just click on this post's title.
Saskia

ICFs/MR & NFs AS PERMANENT HOMES

ENTRY AND PERMANENT STATUS RIGHTS

Did you know that ICFs/MR (Intermediate Care Facilities for people with Mental Retardation) & NFs (Nursing Facilities) can be elected by their residents as their permanent homes (or their legal representatives can make that choice for them)?

"Ugh! Who would want that?" People do; because, for some folks, such residences afford more, not less, freedom and independence. Also, specialized medical and therapies as well as supported activities available near home makes them very desirable to some. So, while this information isn't for everybody, it will be interesting for some who may have been having difficulty gaining entry and others who may be having trouble having their choice to remain honored.

It turns out that for those who qualify, entry and permanent status is a right that is supported by Medicaid Law. The matter came up because the State of Illinois had determined that ICFs/MRs were "transitional," not permanent residences. Led by Rita Burke, Coordinator and President of the Illinois League of Advocates for the Developmentally Disabled & VOR Co-coordinator, 30 organizations signed a letter to the Governor citing the laws relevant to ICFs/MRs as permanent homes. Here are some excerpts:

" Right to access ICFs/MR is an entitlement:
Participation by states in the Medicaid program is voluntary; however, if a state elects to provide certain services, the state’s provision of those services is “mandatory upon them.” 42 U.S.C. §1396a(a)(1).

If a state elects in its Medicaid plan (as Illinois does) to offer qualified individuals services in an ICF/MR, it must provide that “all individuals wishing to make application under the plan shall have the opportunity to do so, and that such assistance shall be furnished with reasonable promptness to all eligible individuals.” 42 U.S.C. § 1396a(a)(8)."

" Right to ICF/MR services is legally enforceable:
The State must provide Medicaid services that it has agreed to provide to eligible individuals with “reasonable promptness.” The right to ICF/MR services has already been tested in Federal District and Appellate Courts in Florida. In Doe v. Chiles, 136 F.3d 709 (1998) the State of Florida argued that ICF/MR services are an optional Medicaid program. The Eleventh Circuit rejected the argument, noting that “even when a state elects to provide an optional service, that service becomes part of the state Medicaid plan and is subject to the requirements of federal law.” Id at721. (http://lw.bna.com/lw/19980317/965144.htm)"

" The Home and Community Based Waiver is OPTIONAL, NOT MANDATORY, and cannot be imposed on an individual who qualifies for and chooses an ICF/MR. In fact, the HCBS waiver will not be granted and may be revoked unless the state offers ICF/MR services to those who qualify.

The Medicaid Act provides that the Home and Community Based Service waiver “shall not be granted” to states unless the state provides satisfactory assurances that “such individuals who are determined to be likely to require the level of care provided in a hospital, nursing facility or intermediate care facility for the mentally retarded are informed of the feasible alternatives, if available under the waiver, at the choice of such individuals, to the provision of inpatient hospital, nursing facility services or services in an intermediate care facility for the mentally retarded.” 42 U.S.C. § 1396n(c)(2)(C).

CMS Regulations implementing this law stipulate that “CMS will not grant a waiver...and may terminate a waiver already granted” unless a state provides certain “satisfactory assurances” including assurances that “the recipient or his or her legal representative will be 1) Informed of any feasible alternatives available under the waiver, and 2) Given the choice of either institutional or home and community-based services.” 42 C.F.R. § 441.302(d)."

" Right to choose to remain indefinitely in ICF/MR services is protected by the Supreme Court decision in Olmstead v. L.C. “nothing in the ADA…condones termination of institutional settings for persons unable to handle or benefit from community settings…Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. at 2187, 17."

The letter to the Governor concluded that ICFs/MRs "are permanent homes and rights to them are enforceable under Federal Law when: 1. the individual remains eligible and 2. the individual chooses to remain."

The letter with complete introductory information can be found on the VOR website. The above excerpts were posted with VOR's permission. Copy/paste this URL: http://www.vor.net/get-help/toolkit-for-families/ or click the title at the top of the post .

Saturday, April 17, 2010

** YOUTH-TO-ADULT TRANSITIONS**

NEW GRANT FUNDS YOUTH TRANSITIONS
SCHOOL TO ADULT LIFE

A $3 million grant from the Walmart Foundation School‐to‐Community Transition Project of the Walmart Foundation will help support a new initiative to help youth with intellectual and developmental disabilities. The money will be shared nationwide by 45 local chapters of The ARC, including the ARC of Washington State.

To learn if your state chapter is participating, see the PDF press release which can be accessed from http://www.arcwa.org/. Currently, it is the top news story on this ARC homepage list.

According to a April 7 press release:
"The project aims to increase transition outcomes
& to build inclusion and involvement of youth with intellectual
& developmental disabilities in independent living,
employment, post‐secondary education or vocational training, and
community, social and civic affairs."