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 .

** 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."

BUDGET NEWS: GOOD, BAD, & NEUTRAL

The Washington State 2010 Supplemental Budget has been released after a long, extended session. It now remains for our governor to sign it or send it back.

Readers from other states are invited to submit lists for their own states similar to the one, below, for Washington. It could give us all a sense of being part of something bigger and some orientation related to how our states compare.

Washington State:
State run-residential habilitation centers (RHCs)
Bad news:
~ 1% across-the- board cut over and above deep cuts sustained last year.
Good news:
~ only a 1% across-the-board cut and not the closure of 2 facilities as had been proposed at the onset of the session.
Neutral news:
~Funding is provided to the Office of Financial Management to conduct assessment of individual resident needs at each residential habilitation center. The reason this is neutral news is that RHC resident-centered, minutely detailed, needs assessments are done routinely as required by Federal law.

In home services:
Bad news: net 300,000 hour cut additional home care service cuts:
Good news: this represented a partial restoration; (It is too complicated for this list)

Bad news: $.13/hour decrease in agency in-home provider pay (about $52/year).
Good news: ~Authorization to add some people to the home and community based waiver services program

Bad news: elimination of the Home Care Quality Authority

Out-of-home "community" placement
Good News:
~ Funding for Expanded "community" residential services with faster phase-in for those listed in this biennium's budget.

Staffing, equipment and service
Bad news:
~continued freeze on state hiring, salaries, equipment and personal services contracts.
~requires layoffs and compensation of exempt and Washington Management Services employees (plan has not been developed.) ("Washington Management Services" is on the order of a union for management.)

Work & day programs
Bad news:
~Elimination of County funding for Jobs 21 partnership
Good News
~Additional funds for employment and day programs for students with dd leaving high school
~See next blog entry for unrelated new funding for employment & day programs for these youth.

Dental and healthcare services:
Bad News:
~ The Federal Health Resources & Services Administration (HRSA) budget reduces payment for dental services.
Good News:
~Other services were not cut.


How do you anticipate these changes affecting you or your loved ones, students, patients or clients?

Thanks in advance for sharing!
Saskia

********VISION: DDexchange********

What Would You Like?

I am not sure how many are visiting here, so far. Probably, I will need to repeat this, or variations of it, as our numbers increase.

My hope for Developmental Disabilities Exchange is to establish a dynamic conversation, maybe many, on the subjects of improving what is available for people with developmental disabilities.

In our state, much focus has been on a long-standing, limited and very limiting debate as to whether state-run campuses known as "residential habilitation centers" (RHCs) should be allowed to continue to exist. I think it is a very sad state of affairs that so much effort goes into closing excellent facilities that are needed and preferred by their residents and their representatives. But, that debate is NOT what this blog is about.

It is about everything else that pertains to the subject of life-styles, choices and resources for people with dd, their families and communities.

Discussing what is not optimal about any given service delivery system, living arrangement or other support, from the perspectives of it's consumers, service providers, direct caregivers and teachers and neighbors, alike, is encouraged when it is framed as a request for constructive ideas for improvement or a clear request for empathetic support. Conversely, in the interest of avoiding becoming a battlefield, taking pokes at other systems and resources with which one has no direct experience is discouraged. Praise of something you, your loved one with dd or your clients/students experience as working wonderfully is very much encouraged.

Participation of members of the larger communities to which people with dd belong is also encouraged. Many of us are so used to considering the needs of people with dd that we can fail to take into account how the needs of others are impacted by our needs or those of our loved ones. I think it is important and helpful to see our lives & those of folks we may represent or provide service to in the context of the larger community.

Sharing of news & giving/receiving support is part of every community; I see ddexchange participants, collectively, as having the potential to become a very rich community, nationwide.

Ultimately, this blog can serve to broaden all of our perspectives on what is needed and what is possible to achieve by and on behalf of people with dd. We could even come together, eventually to create models that do not exist yet, models that optimize people's ability to receive help and support that is geared to their choices and the needs they or their representatives identify for them. Who knows, with the comprehensive reach of the internet, we probably even have among us people with the ability to create new financial systems to support innovations we co-create!

So, here we are at the beginning. We can go in any direction we choose, build on each subject introduced. I have been thinking about how to make this happen & I am wide open to ideas.

What can you envision? What subjects are of interest to you? What needs do you, your loved ones with dd or your clients, patients or students have that could use some fresh air and discussion, maybe, ultimately, improvement? Or what else would you like to share?

I will be moderating, at least for a while. Progressively, we will have other primary bloggers, possibly in time, each moderating for a subject or on behalf of groups of people whose needs are similar. I am not sure, yet, as I really want the blog to represent what is wanted by participants. Also, the format allows for "pages", so when there is enough participation about different subjects, there can be different pages for each. For now, to respond to something someone else has said, just write in the "comment" box, below each blog section (click "comments" to open the box). When you have something to share that is not a direct comment to something I or someone else has blogged, just send it to me by email at ddexchanges@gmail.net .

Also, it would really help the process if you would sign up to become a member so we could have a sense of how many people are participating. Even if you don't comment, it would help us know that we were being read.

Thanks,
Saskia Davis

***********LIFE IMITATES ART**********

8th Annual Sprout Film Festival
"Making The Invisible Visible"
April 30th-May 2nd, 2010
NEW YORK

"NEW YORK, April 16 /PRNewswire-USNewswire/ -- The 8th Annual Sprout Film Festival invites the general public to experience a film festival which showcases the lives, performances, and accomplishments of people with developmental disabilities. Held at the Metropolitan Museum of Art over the weekend of April 30th-May 2nd, 2010 the Sprout Film Festival will present 32 films from 11 countries in 16 programs along with a photo exhibit by famous photographer Mary Ellen Mark called 'Extraordinary Child.

The slogan "making the invisible visible" has been the goal for the festival since it first began in 2003. Sprout is bringing awareness to the unseen, unheard population of people with developmental disabilities including Autism, Down Syndrome and Mental Retardation. Aiming to reinforce accurate portrayals of people with developmental disabilities, films selected for the festival are entertaining, memorable and enlightening. The films focus on real life challenges and issues ranging from relationships, marriage, self-esteem, self-advocacy through sexual desires and general acceptance to fit in a world where persons are often treated as second class citizens."

For more details: Click here: making the invisible visible:' Life Imitates Art at The 8th Annual Sprout Film Festival -- NEW YORK, April 16 /PRNewswire-USNewswire/ --

"In addition to our annual festival in NYC, the festival also tours the country screening an ever-growing selection of films to areas throughout the US. www.sprouttouringfilmfestival.org:

****OPPOSE ARI NE'EMAN'S NOMINATION****

VOR ACTION ALERT

April 9, 2010

PRESIDENT'S NOMINEE for NATIONAL COUNCIL ON DISABILITIES
IS REPORTED TO OPPOSE AUTISM CURE RESEARCH FUNDING

Sent by request of Robin Sims, VOR President.

"This Action Alert pertains to a Presidential nominee for the National Council on Disability (NCD), Ari Ne'eman. Mr. Ne'eman, who has Asperger's syndrome, is a self-proclaimed self-advocate for all persons with autism. He is best known for his radical position against seeking causes and cures for autism, feeling that preventing and curing autism suggests there is something wrong with the individual. As recently as December 2010 he stated, "Autism is currently viewed as a disease of the medical model---Something to be cured or eliminated. That doesn't reflect how we view ourselves, that doesn't reflect our realities."

Robin is familiar with Mr. Ne'eman's advocacy. They both reside in New Jersey and her family is very active in autism advocacy. Her daughter has a severe, regressive form of autism, and her nephew also has autism. The needs of her daughter, who resides in a state-operated ICF/MR, are vastly different from Mr. Ne-eman's, who is a college student who is planning to attend graduate school and has applied for a Rhodes scholarship." Scroll down for details.

Details and Contact Information

Source:
Autism Action Coalition and ACHAMP

Action:
If you agree with these concerns, also raised by the
Autism Action Coalition & , A-Champ Action
To stop the Ne'eman Nomination:
CALL YOUR TWO SENATORS TODAY!
Call the Washington offices of your two Senators
&
ask to speak to the staffer who is responsible for approving nominations to federal councils

Find at their website (copy & paste URL):
http://capwiz.com/a-champ/issues/alert/?alertid=14874836
their alert
&
a list of Senators
&
an online template letter that you can sign and send
&

White House contact

PETITION AGAINST MR. Ne'eman's CONFIRMATION:
FIND IT HERE (copy & paste URL):
http://www.ipetitions.com/petition/opposeari/

MORE DETAILS FROM VOR

"Foe of finding autism cure nominated for National Disability Council"

"Ari Ne'eman, a vocal critic of the need to find the causes and potential cures for autism has been nominated by President Obama to an influential post on the National Council on Disability. Ne'eman's nomination was approved last month in committee and must now go to a vote of the entire Senate.

Fortunately, it was announced on Saturday that an unnamed Senator or Senators had placed a "hold " on his confirmation. But this may just be a temporary situation and Autism Action Network is extremely concerned that Ne'eman could have any role in forming federal autism policy or research goals, and we need you to get active to oppose his nomination.

Ne'eman is an articulate spokesperson for the many services people on the spectrum, especially high-functioning people like himself, need to function better in the world. We agree with many of those goals. Mr. Ne'eman, however, disqualifies himself from being a candidate for the National Council on Disability by his repeated attacks on the need to find the causes, treatment and possible cures for autism. He doesn't just advocate for a bigger pie that includes additional resources for the issues important to him, he wants to divert the relatively paltry sums that are currently spent on the causes, treatments and cures into other needs he finds more pressing. And that is unacceptable.

We don't need opponents of autism treatment and a possible cure.

Ne'eman is an extremely high-functioning person who first received a diagnosis of Asperger's at age 12. He is a college student planning on attending graduate school and has applied for a Rhodes Scholarship. You can see many clips of him on Youtube.

We wrote to Ne'eman in January asking for clarification of his views but he declined to comment. And we see no possible way that Ne'eman's participation on the National Council on Disability is the interest of our children and the vast majority of people with autism.

Here are a few of his quotes:

June 10, 2008 on Good Morning America, Neeman said, "We do not think to aim for a cure is the right approach to take."

December 10, 2009 interview with the CBC, "Autism is currently viewed as a disease of the medical model---Something to be cured or eliminated. That doesn't reflect how we view ourselves, that doesn't reflect our realities."

In his essay Equality Demands Responsibility, 2006, Ne'eman wrote, "But if we are to demand equal legitimacy, if we are to assert that a 'cure' is not only unnecessary and undesirable but morally reprehensible, then we must accept for ourselves equal responsibilities."

We do not believe that anyone who believes curing someone of autism is a "morally reprehensible" act can or should represent the interests of our children.

Here is what you can do:

CALL YOUR TWO SENATORS TODAY! Call the Washington offices of your two Senators and ask to speak to the staffer who is responsible for approving nominations to federal councils .

Let them know that you want the federal government to make finding the causes and cures of autism a top priority, and that you see no need for someone opposed to those goals, like Ne'eman, to serve on the National Council of Disability. Ask them to reject Ne'eman's nomination. Be polite. Be firm.

Forward this message to your family, friends and coworkers and post it to Facebook, My Space and other networks.

Thank you for your support.