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!

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)?


Monday, June 21, 2010

Untwisting The Tale: HR 1255: THE Bill

The Text

Simple, Clear & Straightforward

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,


(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.

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.

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.

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

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.


Tuesday, June 15, 2010


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.)

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


(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 )