U.S. Department of Justice Joins Lawsuit Against State of Oregon

It amazes me how people, programs, things develop.  There are whole disciplines that study both organizational and human development and still it's confusing.  What confounds me is how differently things can develop even when they are in close proximity.  If you heard my sister and me share stories from our childhood you would undoubtedly think we grew up in different families!   I am taken aback that Washington and Oregon are so vastly different in our approach to individuals with disabilities working in integrated jobs in the community.  So different that it was announced at a news conference Monday the U.S. Department of Justice has joined a class-action lawsuit filed last year by people with disabilities against Gov. John Kitzhaber and the State of Oregon.  The suit demands changes to the sheltered workshop system in Oregon.  Conversely, Washington is by far the national leader ensuring individuals who are developmentally disabled are working in jobs in the community.  (See post on Wednesday, May 9, 2012).

How can it be that one state is getting sued by the Federal Government for providing sheltered services with no choice and the state that shares its border, economy, and lifestyle is receiving acclaim for individuals working in the community with a broad array of choices?  I believe the difference is focus.  My Uncle Art, who worked in the Washington DVR system, always told his staff to “keep your eye on the client”.  His sage words were passed on down through the system and heeded by most.  Fixing our focus on the person and what they want to do means not losing sight of the goal.  Indeed, in my opinion, this is the key. 

What I appreciate about Morningside staff is that they do focus on the person with a disability - each and every day.  That is why we closed our sheltered workshop because by an overwhelming majority our clients wanted to work in the community.  Focus is also why we enjoy the position of being the best in the state at serving our clients in jobs in the community, even those who require the most support. 

When I have the opportunity to meet with clients at their job or event I am always so pleased to hear how much the job means to them.  The conversation is so much more positive and, well, normal.  When I visit a worksite to award an employer our Outstanding Employer Award, there is such a definite sense of pride, accomplishment and self-worth as I congratulate the employee on a job well done!

If indeed a person with a disability in a sheltered workshop has not been exposed to another work environment it is incumbent upon us, the professionals, to assist them in seeing the possibilities away from their current environment and integrated with their neighbors and fellow citizens.   Frankly, the support, connection, and interaction are much more positive in a community job than a sheltered workshop job – and I know this from experience. 

So the solution that may sound too simplistic is rather simple “keep your eye on the client” to ensure they have the same opportunities as everyone else.

For more information on the lawsuit here is an article in The Oregonian:

http://www.oregonlive.com/portland/index.ssf/2013/04/us_department_of_justice_accus.html

"A 'Good Enough' Dad and His Special Son"

My radio listening habit is what I would call rather eclectic and the genre largely depends upon the time of day and what I am doing.  In the morning I wake up to NPR and on Friday they broadcast a story that has been recorded for StoryCorps, a short vignette, typically a family or friend talking to each other recounting life experiences.  A couple of weeks ago I heard this story and it moved me.  I could identify myself in this conversation from various viewpoints; from a father with a son who has a disability, from the viewpoint a son going off to college for the first time and as a person who has worked with individuals with disabilities for many years now.  This story is very typical of many of the individuals we have the pleasure of working with each day.

This is a story about a restaurant called Tim's Place in Albuquerque, New Mexico. It's named after Tim Harris, a young man with Down syndrome who started the business in 2010 with help from his dad, Keith.

http://www.npr.org/2013/03/15/174328613/a-good-enough-dad-and-his-special-son

I hope you enjoy this as much as I did. 

How connected am I?

I am fairly certain that most of us at one time or another think we have a good grasp of the situation or feel we are connected or we may even think we have talent but then our shortcoming is pointed out either rather abruptly, rudely or through closer self-reflection.   I am stunned by the musically challenged people that think they can sing and appear on “American Idol” and are shocked when the judges tell them they can’t carry a tune. 

At times I think I am plugged into the disability movement through my connections and feeds I get for blogs and other news sources and then I read something only to find out that something has been out there for a while and I tell myself “Whoa were did that come from?”

I had been reading about changes to the DSM (look at last month’s blog) and I missed this.

This piece was published in Disability Scoop.

“After Criticism, DSM Committee Changes Course” by Michelle Diament

"Experts behind the new version of the Diagnostic and Statistical Manual of Mental Disorders didn’t back down on major changes to the definition of autism, but appear to have made an about-face when it comes to intellectual disability.

Initial plans to revise the diagnosis of “mental retardation” in the forthcoming fifth edition of the psychiatric manual called for the condition to be renamed “intellectual developmental disorder.” Critics blasted the proposal because it was inconsistent with the more commonly accepted term “intellectual disability” which has already been adopted in many federal and state laws.

Now it appears that the American Psychiatric Association heard the complaints. In newly-released documents, officials from the psychiatrists’ group stopped short of revealing the final text for the manual, but now say the version slated for publication in May will replace “mental retardation” with “intellectual disability.” The move is an effort to align with the American Association on Intellectual and Developmental Disabilities, the U.S. Department of Education and other groups, the psychiatric association said.

The new term with be appended with a notation about “intellectual developmental disorder” in order to be congruent with language expected in an upcoming revision of the International Classification of Diseases, or ICD, a guide to diseases and disorders published by the World Health Organization.

“I’m really pleased that at least in the United States we won’t have a conflict in terminology,” said Margaret Nygren, executive director and CEO of AAIDD, who objected to the psychiatric association’s initial plan.

The new DSM will also bring changes to the criteria for the diagnosis of intellectual disability, with less emphasis on a person’s specific IQ score and more consideration for clinical assessment.

“The updated criteria will help clinicians develop a fuller, more accurate picture of patients, a critical step in providing them with effective treatment and services,” according to a fact sheet released by the psychiatric organization.

The alterations to the "mental retardation" diagnosis came largley in the shadow of changes to the way that autism is defined withing the DSM.  Despite significant criticism, those behind the new version of the manual did not waiver on plans to eliminate Aspergers's syndrome and fold it as well as childhood disintegrative disorder and persasive developmental disorder, not otherwise specified under the umbrella term "autism spectrum disorder."

 

Schools Directed to Provide Sports for Students with Disabilities.

I just heard today driving to work listening to NPR that the Department of Education is creating a Title 9 program for individuals with disabilities in publically funded schools.  This is absolutely cool.  Please read the NPR news spot. 

http://www.npr.org/templates/story/story.php?storyId=170229198

This is indeed great news. 

 

It’s here….

Well the legislative session is upon us and before it comes out of the gate we hear “Olympia we have a problem”.  The Senate is now run by a new coalition.

Here is an excerpt from The Olympian article written by Brad Shannon and Jordan Schrader “Washington’s Legislature opened its 105-day session Monday with a bit of friction in the Senate but few fireworks.

Two Democrats defected from their party as expected, joining 23 Republicans to vote themselves into power in the state Senate. The group elevated one of the rebels, Rodney Tom of Medina, to the top post of majority leader and the other, Tim Sheldon of Potlatch, to the largely honorary position of president pro tempore.

They aren’t the only Democrats who will play roles in the new-look Senate. Members of the new minority will keep control of two committees, and Des Moines Sen. Tracey Eide will share power atop the influential panel that writes the state transportation budget.

“I think the Majority Coalition Caucus is a great opportunity for like-minded legislators of both parties – regardless of party – to work together,” said Sheldon, who will preside over Senate floor sessions in the absence of Lt. Gov. Brad Owen, himself a former 35th District conservative Democrat who bucked his party in the 1980s while in the Legislature.

Sheldon said the coalition is a “new model” for lawmakers. “So many people that are partisan to the core want this effort to fail. And I’d like to prove them wrong,’’ he said.

Other Democrats described the new power structure as a “coup,” a “show-trial,” or “bipartisanship in name only.”

Well I guess we will need to see what develops over the 105 day session that needs to develop a 2013-2015 state budget and fill a 2 billion dollar hole given a shortfall and the Supreme Court education decision that directs the state to “fully fund” K-12 public education. 

Amongst all this people with disabilities want to be heard.  In January is the 23^rd “The Community of People with Disabilities of Washington State Legislative Reception”.   The Reception is a way to meet with your legislators and network with many people you may know or not.  Hint before the reception you can call your legislators and invite them to the Reception that is a great way to start your relationships with your legislators.  The date is January 23^rd from 5:30-7:30 p.m. in the Leg building Columbia Room. 

DSM ?

Recently we needed to move our Morningside Library to make room for two new staff.   On the plus side it was a good move because the material really needed to be gone through and purged of the out- of-date periodicals, books, and other material.  In the end we purged the Library down from three bookcases (16 shelves total) stuffed with obsolete items down to about 6 full shelves.  We decided we really didn’t need Safety Committee minutes and material from 13 years ago!  In the process we ran across old copies of the DSM (Diagnostic and Statistical Manual of Mental Disorders).  The DSM II and III, that were collecting dust on the bookshelf, were first published in 1968 and 1980 respectively.  We also have a couple of the fourth revised edition which came out in 2000.  So obviously this publication, put out by American Psychiatric Association, isn’t revised often.  Every 10-20 years seems like a long time to develop a new manual especially in this changing world of ours.  The next edition is scheduled to be published in May 2013 and, of course, it isn’t without some controversy.  I guess I would be up in arms if I thought they got it wrong and you had to wait a decade to see it corrected!

According to Michelle Diament writing for DisabilityScoop in an article entitled Psychiatrists Approve New DSM, Asperger’s Dropped she writes:

“However, officials did confirm that one of the most controversial proposals calling for autistic disorder, Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder, not otherwise specified to be folded under the label “autism spectrum disorder” did get approved. The organization said the change will “help more accurately and consistently diagnose children with autism.”

Talk of the autism change has sparked concern that some currently diagnosed with the disorder may no longer qualify under the new criteria, but experts on the psychiatric association panel responsible for recommending the updates insist this will not be the case.

There is also concern about dropping the Bereavement Exclusion from Depression from this diagnostic publication.

In Jim Sabin’s Blog Health Care Organizational Ethics - For discussion and debate about the ethics of health care organizations and the wider health system he writes “In January I criticized the American Psychiatric Association (APA) for planning to drop the "bereavement exclusion" from the definition of major depressive disorder in the forthcoming new edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V). Under the exclusion, the diagnosis of depression is not made if:

The symptoms are not better accounted for by Bereavement, i.e., after the loss of a loved one, the symptoms persist for longer than 2 months or are characterized by marked functional impairment, morbid preoccupation with worthlessness, suicidal ideation, psychotic symptoms, or psychomotor retardation.”

In a recent issue of the New England Journal of Medicine, Richard Friedman, a distinguished psychiatrist at Cornell who writes excellent New York Times columns for general readers, added to the voices criticizing the APA for medicalizing normal grief.  Here's the essence of Friedman's argument:

‘In removing the so-called bereavement exclusion, the DSM-5 would encourage clinicians to diagnose major depression in persons with normal bereavement after only 2 weeks of mild depressive symptoms. Unfortunately, the effect of this proposed change would be to medicalize normal grief and erroneously label healthy people with a psychiatric diagnosis. And it will no doubt be a boon to the pharmaceutical industry, because it will encourage unnecessary treatment with antidepressants and antipsychotics, both of which are increasingly used to treat depression and anxiety...The medical profession should normalize, not medicalize, grief.’

Despite criticism the DSM-V working group has not changed its plan to eliminate the bereavement exclusion, but it has added a footnote that at least acknowledges the challenge of distinguishing normal grief from the illness of depression.”

Well there you have it – two major controversies over the new publication.  They did come up with a new classification though 'Video Game Addiction'.  Hum I wonder what psychotropic drug will be developed to counteract this (I am sure the pharmaceutical manufacturers are wringing their hands in glee over this).   I am not sure how my son will react when I tell him he has a certified mental illness but not to worry because Pfizer will soon have a pill to help!

Is the UN vote a mystery….or a sign of the end of times?

Maybe the Mayans have it correct after all – the end of the world is fast approaching. I don’t think it is some hieroglyphic date on a wheel but truly a world run amok where craziness abounds. A clear example of this apocalyptic sign is that the US Senate rejected the UN Convention on the Rights of Persons with Disabilities! I believe I am sufficiently calmed down now after last week’s monumentally embarrassing decision by the US Senate to reject signing-on to this Convention which promotes the rights of individuals with disabilities worldwide. I guess we in the United States aren’t concerned about the tenets of the Convention to “promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms of persons with disabilities, and to promote respect for their inherent dignity”. I don’t want to get into the politics of certain parties nor do I want to examine the illogical conclusion of those who think signing on to this Convention will affect each home in the United States or diminish us as a sovereign nation.

I would like to talk about how we, as world citizens, support the tenets or Guiding Principles of this Convention.

Here are the eight guiding principles that underlie the Convention and each one of its specific articles:

1. Respect for the inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons

2. Non-discrimination

3. Full and effective participation and inclusion in society

4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity

5. Equality of opportunity

6. Accessibility

7. Equality between men and women

8. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities

In this Blog I have mentioned that I don’t have a frame of reference personally other than by association to experience the pain of discrimination. I can’t imagine being on the receiving end of being disrespected and not given the option of making choices that effect my life. But unfortunately you don’t need to travel far to see persons with disabilities disrespected and being told what to do and when to do it. It breaks my heart to see an adult with disabilities arrive at our office and a care giver who accompanies the person talk down to, or make a decision for, the person with a disability. I think Bob Dole was disrespected as a person with a disability by the actions of the Senate. I wonder what he was thinking during the vote.

Unfortunately, even in our own great society supposedly the “gold standard” for recognition of the rights of person with disabilities, people with disabilities aren’t afforded full participation and inclusion in our society. Washington State has a great track record of supporting persons with disabilities. After all we were the first state to pass legislation offering free and appropriate education for individuals with disabilities in our public schools with the passage of HB 90 decades ago. We have done a great job of supporting individuals in our schools but have not done a great job of transitioning students with disabilities into adulthood by supporting them through living and vocational services. Apparently the notion that someone might need some support to live and work independently isn’t in our lexicon of inclusion. If we are the “gold standard” then the value isn’t worth much.

Equality and accessibility sound good, very noble ideologies to attain. We may think that the in the United States this is our expectation and the reality that persons with disabilities experience. Sadly this generally isn’t the case. Oh sure strides have been made in the elimination of some architectural barriers but overall we have a long way to go. I still experience “unusual” workarounds when I accompany someone in a wheelchair going out to eat. But attitudinal and artificial barriers exist and those are the hardest to make accessible to ensure everyone is treated equally. Unfortunately I have too many examples to fit in this blog. Often, when I attend a lunch with someone in a wheelchair, the wait staff looks to me for guidance. When I look at the person with a disability to acknowledge them and demonstrate they are present and can make decisions the wait staff looks at me after the person with a disability has spoken as if I am the “adult” and the person with a disability is a child.

I know people have ideologies. Unfortunately they often can only see things their way, as if their way of thinking is the only right way. When I talk to persons with disabilities who heard the Senate testimony they felt devalued plain and simple. People couldn’t even get the correct vocabulary – so it leads one to believe they don’t care.

Ultimately our country can hope for a future it wants to achieve. If those in power don’t want individuals to be successful, included, equal and feel valued then we can create that by doing nothing and not signing on to this Convention. But if we want a society where everyone is valued, included, successful, accepted, respected then we can also do this but it will take all of us wanting this for all people – disabilities or not.

If you want to see the work of the United Nations go to: http://www.un.org/disabilities/index.asp