Tuesday, June 22, 2010

House Human Services Work Session on Autism

On June 16, 2010 the House Human Services held a work session to examine the current strategies and best practices for diagnosing and providing services for persons with autism and their families and will look at how other states have addressed autism and its increased rate of diagnoses. Presenters included Dr. Wendy Stone, Director of Autism Center, University of Washington; Dr. Charles Cowan, Medical Director Seattle Children's Autism Center; Maria Nardella, MA, RD, CD, Manager, Children with Special Health Care Needs Program, Washington Department of Health; Dr. Glenn Tripp, Medical Director, Developmental Behavioral Pediatrics, Mary Bridge Children's Hospital; Diana Stadden, Policy and Advocacy Coordinator, The Arc of Washington State; and Dawn Sidell, Executive Director, Northwest Autism Center.

TVW has uploaded video of the hearing on their website. You can access it via the links below. Also included is a link to the committee website where a PDF version of all the PowerPoint presentations can be accessed.

Please click here to watch video or paste this url into your browser address bar:

Committee meeting documents are available online:

The committee was very receptive to the information shared and were very clear that they expect some agency requested legislation regarding autism concerns from the Department of Health for the upcoming legislative session. It is clear that we do not have an accurate way of documenting how many people in Washington State have autism.

The work of the 2005 Caring for Individuals with Autism Task Force was discussed and it was disappointing to report that only one recommendation from the task force had been accomplished, that being the creation of an Autism Guidebook for Washington State. The book is very beneficial and addresses issues from birth through the lifespan, but there is no funding to print more copies of it. Because of the task force work, we were able to receive a grant from the Federal Combating Autism Act and now have an Autism Advisory Council looking at issues surrounding children with autism (it does not look at adult issues).

The Arc of Washington State is compiling possible ideas for legislation that will benefit families with autism. Ideas range from providing specific autism interventions such as Applied Behavior Analysis (ABA) to family supports such as Parent to Parent and additional Home and Community Based Services waiver openings. You are encouraged to offer your ideas for legislation in the comments box below.

Diana Stadden
Parent of a 17 year old with autism
Poicy & Advocacy Coordinator
The Arc of Washington State

Friday, June 18, 2010

HR 1255 - What is it really about?

The Arc of Washington State recently posted an Action Alert at http://capwiz.com/arcwa/state/main/?state=WA where we encourage you to call and email your congressional leaders.

Here is the summary written by the Congressional Research Service for HR 1255:

"Prohibits any entity that receives funds from the federal government from using them to file a class action lawsuit against an intermediate care facility for the mentally retarded on behalf of any facility resident unless the resident (or the resident's 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."

The National Disability Rights Network (NDRN) opposes this bill and is also encouraging people to contact congressional leaders and ask them to oppose it. The bill is the same one that was brought forward in 2007 (HR 3995) and it died in committee then.

On the surface, this bill would appear to be protecting the individual with a developmental disability. In reality, this bill would greatly limit the ability of protection and advocacy agencies to bring class action lawsuits regarding institutions for people with developmental disabilities. It would allow guardians and other representatives to “opt out” a resident from a class action.

The best interest of the individual with a developmental disability is not always served by the guardian, particularly when some attorneys make money by being the paid guardian for 20, 30 or more people living in institutions. It is less work for these paid guardians to keep their clients in an institution than to have to oversee services provided in the community.

The 2009 Facilities Closure report (one of many) commissioned by our legislature recommended that Washington close all but a few RHC beds by 2019 and convert Lakeland, Fircrest, and Yakima Valley into three small community support centers. Each center would have clinical expertise to support people with autism and their families. These three centers would also retain a small number of beds to honor the state’s commitment to allow people and their families to age-in-place.

The Olmstead Decision in 1999 affirmed the right of individuals with disabilities to live in their community and not be required to live in institutional settings. The 'integration mandate' of the Americans with Disabilities Act requires public agencies to provide services "in the most integrated setting appropriate to the needs of qualified individuals with disabilities." It is a violation of an individual’s civil rights to institutionalize them because it is easier for the guardian. We must look at what is the least restrictive environment that allows individuals to participate in community activities, be employed and be provided the freedom and opportunities that every other Washingtonian enjoys.

Advocating for full community participation for all,
Diana Stadden

As a follow-up:

I received this clarification from NDRN staffer Eric Beuhlmann responding to the Developmental Disabilities blog criticizing the above blog entry:

“Where the legislation clearly restricts the choice of the individuals with disabilities is where their choice differs from their legal representative. Because the definition of legal representative is pretty broad, it can cover situations where the individual is capable of making their own decisions, but because of the legislation that choice will be overridden by the choice of the legal representative to opt out.”

Additional follow-up:
A letter of opposition to HR 1255 was sent to Barney Frank and signed by organizations of the Consortium for Citizens with Disabilities (CCD). This letter is posted on The Arc of Washington's web site at http://www.arcwa.org/news_events.htm

August 19, 20101 update:
ABA passes resolution opposing Barney Frank’s HB 1255

On August 10, 2010 American Bar Association (ABA) House of Delegates approved a resolution creating a policy in support of the national protection and advocacy system at the ABA Annual Conference in San Francisco, CA. Specifically, their new policy “supports the reauthorization, funding and authority of the Protection and Advocacy System (P&A) and related programs of legally based advocacy services protecting the rights of persons with disabilities and opposes legislation that would place limits on class actions on behalf of persons with disabilities beyond what is required under the Federal Rules of Civil Procedure.” DisAbility Rights Washington is the Governor designated protection and advocacy system for Washington state.

The resolution is considered timely by disability rights activists because Rep. Barney Frank is currently sponsoring House Bill 1255 which would place a limit on class action lawsuits brought by P&A agencies. HB 1255 is supported by the Voice of the Retarded and other advocates in favor of maintaining large institutional setting for people with developmental disabilities. For more information regarding Rep. Barney Frank’s bill follow the first link below. For more information regarding the ABA House of Delegates follow the second link.