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

Who’s Morbid Mind?

I know I’ve mentioned my son, Andrew, in my blog before. Andrew is a 17 year old junior in high school with a personality many wish they had. He is very friendly, outgoing and kind. He befriends everyone and has more friends than most people I know. As an example, this summer when we went to the University of Tennessee for a church youth conference, traveling companions noted they thought we were in some sort of competition to chat up strangers! I know, in part, where he developed this amazing skill. Andrew is a person with a disability – he is missing his left arm. Andrew has taught me so much about the determination of someone who has physical challenges not letting it get in the way of living an exciting and extremely fulfilling life. When he was younger Andrew thought I was a real-estate developer! It came up in a discussion about disability. During the conversation he said I didn’t know what I was talking about. I asked him what I did for a living and he said I was a “developer”. I realized I had been involved in so many real estate and building projects at work, church and church camp that he thought I was a real estate developer for a living. He was surprised when I told him I had been working in the area of employment for individuals with disabilities for over 30 years. Of course, now he thinks I am just plain clueless because I am his dad and dads are dorks.

This year, along with some neighborhood kids, Andrew volunteered for a couple who run the “My Morbid Mind Haunted House” during the month of October. His job was to scare people. To do this he wore makeup that made it appear his arm has been torn off leaving him covered in blood. Actually from the pictures I was impressed with the sophistication of the makeup. After his first day on the job we had a chat. I told him I was conflicted about this project. I understood that he thought of this as fun and that he likes to do things like this, including lying in wait to scare me when I walk down the hall in our house. But I told him from a disability stand point I didn’t like it since it reminded me of the “freak shows” that traveled around exhibiting people with disabilities like animals in a cage. So I hopped on my disability rights soap box and discussed how far we had come as a society from that time of showing people off to hiding them in institutions to finally a place of acceptance and inclusion. I think he got my point but I am concerned it wouldn’t take much for society to slip back to where we were once before.

I get concerned in this era of significant fiscal challenges that we may be shifting our priorities turning us into a society which is more individually-focused and devoid of empathy. I could see this society easily shifting gears – currently the cost of serving an individual with developmental disability in long term community employment and living supports is less expensive than a state run residential facility. But if, in fact, the costs were lower in an institution I am not confident the policy makers wouldn’t choose fiscal concerns over human rights. I know we have come a long way. I have seen tremendous changes in how individuals with disabilities are treated in our communities. But in the name of fiscal conservancy, and in the midst of falling off the federal fiscal cliff, I am hoping the tide of public opinion will hold fast to the position of inclusion and acceptance for people with disability in our society.

As advocates it means we must be ever vigilant.

Noise – How to be Heard Above the Din?

There is a lot of noise out there especially this time of year during the political season with so many campaign ads running on most airwaves. It is enough to just shout “Stop – I don’t want to hear”. Then something breaks through all the chatter we get bombarded with and you hear and like the message. I just received this in my email. Signed Proclamation - Disability Awareness Month - October 2012 So what does this mean? Let us all recognize that while we have come a long way in employing individuals with disabilities - we have a long way to go. Let's celebrate diversity and inclusion.

Thurston County Candidates Forum – WOW!

The Thurston County Advocacy Coalition of which Morningside is a member is made up of 15 service providers and advocacy groups. The Coalition sponsored a “Meet the Candidates” Forum on Tuesday October 9th at River Ridge Covenant Church. The event was designed for people with disabilities and their advocates to hear from the candidates and their view and support of individuals with disabilities in our community. Over 50 persons turned out to hear the 12 candidates running for public office in the 2nd, 20th, 22nd and 35th legislative districts as well as Thurston County Commissioner. We were pleased at the turnout and feel confident that these candidates that spoke to us knew the importance of community inclusion and services in the lives of our citizens with disabilities.

I want to thank our board member and client Lucas Doelman for preparing and presenting his talk on taking the dis out of disability and achieving hopes and dreams the same for all citizens in this country. Our own Lori Bates spoke of the importance of work and how she is included in the workplace by being a good team member and encouraging customers. She is the star of our video story found at    http://www.youtube.com/user/morningsideservices?feature=results%20main        

I am pleased that we had the opportunity to take a lead role in establishing the candidates night and our elected officials and those running for office certainly know Morningside and the importance of our services. 

Liberty for Some and Justice for a Few: The Disability Gulag

A friend of mine shared the link below on Facebook last month. I couldn’t get the article, which was published in the New York Times in 2003, out of my mind. It made me think of many friends who have significant disabilities working and living in our community. These are very accomplished people making a tremendous difference in their communities. They also have significant challenges in navigating this world built for those who can talk, listen, see and walk without any encumbrances. I can’t imagine what it is like to live a life dependent to some extent upon others.

I have no personal frame of reference other than to be associated with these wonderfully fine and gifted people like Joelle Bruner or Don Hayden or Luther Smith who I have gotten to know very closely. I have not experienced any hardship (for which I am thankful) getting around and connecting with others on this earth. I have not had any problem finding employment or riding public transportation or any activities most of us “abled bodied” take for granted.

The article struck me because I thought about the stereotyping of individuals with disabilities and the realities of institutionalization.

I have not revealed this to but a few and most certainly not published this in a blog for all to read but back before I started my career in community rehabilitation programs I was offered a job at the state institution located in Buckley. The first step in the hiring process was orientation which started with a tour of the facility. So I arrived at the institution early that morning eager to begin and was introduced to a pleasant woman who guided me through Fir Hall. She explained that most people start at Fir Hall. It was also the facility where the most severely disabled individuals were housed. I must admit I was immediately taken aback when we arrived at the hall because it looked like a prison. It was an institutional pale green concrete building with grating over the windows. When we entered the interior doors looked foreboding - very rugged and secured with a lock. She explained this was to keep some of the people who had the desire to flee from wandering off. She showed me the office – non-descript institutional metal desks. Then she took me into the day room.

I was shocked at the environment and the condition of the persons present. There were about 15 people in this room and all of them were performing some type of self-stimulation. The smell of urine was strong. The only aide was sitting on a desk watching the lone television which was housed behind a metal screen. The aide was oblivious to what was happening and clearly nonplussed by us walking into the room since he didn’t stir. It was obvious this person had no interest whatsoever in the persons residing there. We went through another locked door into the dormitory – no one was allowed here during the day I was told unless they were sick. My guide also noted that no cigarette butts could be left around because some residents would eat them. I am sure I asked questions to act interested in the job and gain information but left with a heavy heart knowing I didn’t want to work here. To be locked up all day even if I had a key. I left and to be totally honest was very emotional about the conditions I had just witnessed and deplorable condition and treatment of the residents. I had no idea such a place existed. There was no way I could return.

When I got home I called the Human Resource department and explained I would not be returning, thanked them for the job offer, and suggested they should really consider someone else. The HR person thanked me and I said “Why are you thanking me, I am letting you down because I said I wanted the job and now I can’t accept it.” The HR Specialist told me I was one of the few that actually called back to refuse the job, most she said they simple never see – they just don’t show up.

So I have been to the “Gulag” and have greeted people who have come back to the community from the institution. I can’t imagine being a person who lives on the edge of congregate care because the system prefers it. The richest nation in the world and we can’t seem to muster our collective courage to change – to move away from large institutions in our state. Why must we obtain a waiver to fund services in the community rather than the institution? Shouldn’t it be the other way around? I cry out for those in the Disability Gulag.

http://www.nytimes.com/2003/11/23/magazine/the-disability-gulag.html?pagewanted=all&src=pm

Harriet McBryde Johnson