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

*********************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

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

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.

********************NAMIWalks*******************

*

A phenomenon which we seldom see discussed is dual and multiple diagnosis among people with developmental disabilities. Mental illness is among the more common problems with which it can be paired. Another very challenging situation occurs in families in which one child has a developmental disability and another has a mental illness.

The following invitation comes from a parent who has such experience and is out there, working to help both problems!

*
MARK YOUR CALENDAR!
May 15, 2010
NAMIWalks for the Mind of America

Seattle, WA at Magnuson Park at Sand Point
(enter at 74th St. on Sand Point Way)

Written by Cheryl Felak: 4/4/10 @ 7:43pm

I am writing you today to tell you about an upcoming event that I am participating in that is both very important and very exciting to me. It is NAMIWalks for the Mind of America, NAMI’s signature walkathon event:

I have formed a team in honor of 2 organizations:
ActionDD, a grass-roots advocacy group for people with developmental disabilities. The people in ActionDD have been tireless in promoting dignity for all and a continuum of care. This includes maintaining Washington's Residential Habilitation Centers. I invite you to come and walk with me in this organization's honor.

NAMI, the National Alliance on Mental Illness, is the largest education, support and advocacy organization that serves the needs of all those whose lives are touched by these illnesses. This includes persons with mental illness, their families, friends, employers, the law enforcement community and policy makers. The NAMI organization is composed of approximately 1100 local affiliates, 50 state offices and a national office.

I am also walking in honor of family members, friends and caretakers of those with mental illness. The goals of the NAMIWalks program are: to fight the stigma that surrounds mental illness, to build awareness of the fact that the mental health system in this country needs to be improved, and to raise funds for NAMI so that they can continue their mission.

I would like to ask you to come and walk with me or donate to support NAMI in this great event.

Visit my personal walker page to sign up: http://www.nami.org/namiwalks10/SEA/cheryl (Click on link in side list or copy and paste). It features a link to my team's page where you can see who else is walking with me. There is also a link so you can donate directly to me online. Donating online is fast and secure, and I'll get immediate notification via e-mail of your donation.

NAMI is a 501(c)3 charity and any donation you make to support my participation in this event is tax deductible. NAMI has been rated by Worth magazine as among the top 100 charities "most likely to save the world" and has been given an "A" rating by The American Institute of Philanthropy for efficient and effective use of charitable dollars.

Thank you in advance for your support.

Sincerely,
Cheryl Felak