Special Olympics – Shoreline Stadium

What a great day yesterday – not only did the sun come out but there was a huge turnout of athletes for the Special Olympics Track meet at Shoreline Stadium.

It was great to run into people from all stages of life and events from the past years.  Our kids are growing up, joining different teams and branching out in various programs.  This was one place where you can actually experience the full continuum of needs and abilities of people with developmental disabilities.  It’s also so inspiring to see people of all ages participating in these events.

I came away from the meet very inspired – the joy expressed by the athletes is contagious.  We’re

looking forward to the next meet on May 14.

My Son Cannot be Cured!

As a healthcare professional, parent, citizen and disability advocate, I still do not understand the position of DSHS, DDD and prominent “advocacy” groups such as The Arc Chapters, People First and others.  These groups seem to believe that if you keep spending money and services on people with disabilities, they will become normal, function as normal and be productive as normal.  For some people this may be true and for those people I am very supportive.

There is another side to the story though – there are many of our citizens with disabilities who will never be able to be on their own, have a job with a competitive wage, own a house, cook their own dinner, or drive a car.  And you know what – they probably don’t care and wouldn’t even consider those things as part of their life – and that’s OKAY!

My son is one of these citizens.  He’s not normal, will never be normal, has no desire to become normal (he doesn’t even know what that is anyhow) but this in no way diminishes his worth as a beloved human being.  He is absolutely perfect the way he is.

In addition to his incredible worth as a human being, my son is about the happiest person that you will ever meet – he finds joy in so many aspects of life and just thinking about what brings him joy, brings me and all who know him joy.

I believe that if someone wanted to spend the millions of dollars on him to try to train him for a “real job” or to try to make him feel like he’s part of the community; they are wasting everyone’s money and time.  Not only that, they would be irritating him since he is totally incapable of fitting into a “normal” type of life.  I’m tired of people telling me that “if only he had the right supports he could do normal things” – he’s perfectly content with what he can do and works at his pace learning new things that matter to him.  Why can’t society let him live his life rather than trying to make him fit a mold that is beyond his capacity to fit?

Also, as a health professional, parent, citizen and disability advocate, I would much rather see the public funds that are overspent on trying to get people to be normal, spent on more productive services – think of the good that could come to the whole society if these dollars were spent on education, health care, public services that benefit more people than just a few that will never be able to live up to the expectations of “normal?”

I do believe in disability advocacy but this movement has gone way too far in trying to overcompensate.  It’s time to swing back to sanity now and realize that there is a continuum of abilities and that we need to honor and cherish that.   We seem to accept everyone else for who they are, why can’t we accept those with profound disabilities for who they are too?


Quality of Life?

Many People ask about the Quality of Life of our citizens whose home is an RHC community.

The residents in the RHC community have a quality life – one that ensures their health and safety, social and recreational activities and community interaction.  These are qualities that would not be available to many of these residents in various other environments.

Above all, the human rights of our citizens are protected and celebrated on the RHC community.  This is something that can not be said about residences in many of the “community” residences that Susan Dreyfus, DSHS Secretary, and others want to exile our residents to.

What is Nurse Delegation and how does it work?

Under the Washington State Nurse Practice Act and Washington State Law, the residents who live in group homes and SOLAs will not be able to get their medications safely.  The staffing model does not include a nurse’s aide.  Also, there are only certain medications that can be legally delegated by a Registered Nurse.  

In addition to Nurse Delegation, I am very concerned about oversight.  How often does a Registered Nurse actually come in and lay eyes on the residents?  This is a very critical component of quality of life, health and safety. 

PHOTOGRAPHER FORREST SARGENT OPENS FIRST SEATTLE GALLERY SHOW

FIRST PHOTOGRAPHIC SHOW BY AN AUTISTIC ARTIST IN SEATTLE

OPENING MAY 5

Forrest Sargent, a talented photographer who is also a severely autistic
young adult opens his first exhibit in Seattle, WA as part of a larger show
at the newly opened ART WITH A HEART GALLERY in Pioneer Square.

Forrest, who was featured in segments on KOMO TV 4 and KING 5 TV,
consistently delights critics and fans alike with his unique view of the
world as expressed through the lens of his camera. In his own words
(‘spoken’ through a letter board):

“my name is Forrest Sargent. I have autism. I use a letter board to
communicate. I am 20 years old. I am a photographer. I love taking photos
because I can make something beautiful, I am an artist. Taking pictures, I
need to find the hidden light in everything. I want people to get pleasure
and reach my mind from my photos.”

Special Olympics – Washington

What:  2011 King County Region Athletics Meet

When:  Saturday, April 2011 – Events start at 9:00 AM

Where: Shoreline Stadium

Team Fircrest Falcons has 4 participants this year!  

All four will be participating in the 200 M Walk, Softball Throw and 50 M dash.  

Congratulations and have fun!  

The Arc of Island & Skagit Counties

What is advocacy?

Maybe I’m being an idealist but what I see happening is not what I call advocacy.  I see people being used and paraded in front of our legislators.  These people, many who have a developmental disability are being given statements to read.  I really wonder how many of these statements are actually self-directed.

I have been asked  if RHCs are so great, why don’t we see people down in Olympia who say “We LOVE RHCs” –  asked by a prominent advocate from The Arc of Island and Skagit Counties who regularly accompanies self-advocates in testimonies.   Just the fact that she asks that question indicates to me that she is unaware of the significant complexities that many of the residents whose home is an RHC deal with.

I have thought of taking my son to Olympia too but I don’t want to use him as a puppet.  It would be an eye opener for many though to experience him first hand and to have a frame of reference as to the vast continuum there is when talking about people with developmental disabilities.

I have written to Joy Caldwell, Executive Director of The Arc of Island and Skagit Counties,  twice with the hope of having a discussion. She has not responded but she did post this on their Facebook page.

The Arc of Island & Skagit Counties

“So in the spirit of open dialogue, I would like to hear from anyone interested in posting their thoughts on the topic of Supported Employment, Community Access & Day programs in light of our WA House & Senate Budget proposals for people with Developmental Disabilities. What do you think…?”

Hi Joy,  (April 15, 2011)

I wrote to you a few days ago asking for open discussion.  I have not heard from you but did notice that on the Facebook page for The Arc of Island and Skagit County, you posted this ” So in the spirit of open dialogue, I would like to hear from anyone interested in posting their thoughts on the topic of Supported Employment, Community Access & Day programs in light of our WA House & Senate Budget proposals for people with Developmental Disabilities. What do you think…?”

I tried to comment but it appears that I’m blocked from commenting.  How can one have an open discussion when people would want to engage in one are blocked and censored?  This does not make sense.

Does she really want an open discussion?  If so, why are people not allowed to comment?

Thank you!

Thank you, all, for your support and help in making this issue more visible.  Many are unaware of the harm that some advocates are proposing.  You would think that disability advocacy groups would be all over this problem  but in fact, they are a huge part of it.

We have much work to do this week in Olympia and will do our best to make ourselves present and heard.  We’re up against very strong groups who have dominated and bamboozled many over the years.  We are beginning to chip away at that and informing people of the reality of caring for our most vulnerable citizens in the most cost-effective, safe and humane way possible.

What is The Arc of King County afraid of?

If the health and welfare of our most vulnerable citizens was not at stake over these issues, I would actually find the petty and childish behavior of the “Advocates” funny.  Who are these people and what is their agenda?  I’d really like to know because they certainly to not advocate for the same people that I and other people in grass roots groups do.

Are they afraid of people questioning them and possibly finding out the mismanagement of our public funds that has cost us MILLIONS?

1.  They are not “Advocates” for our most vulnerable citizens – in fact, they are quite the opposite.  Hearing the cheers and congratulations for closures of our RHCS, a move which is devastating for many, by these people and their pawns, only solidifies the fact that they do not advocate for all.

2.  They are not interested in any information that is brought up that indicates extreme mismanagement of our public funds by DSHS. If you look at the Washington State Auditors website and read the reports you will be astounded by the lack of oversight with our public money in the hands of DSHS.

3.  If this mismanagement was even slightly corrected, there would be millions of dollars saved which could then be put towards real care of our citizens.

4. They are advocating for expensive social experiments to be done with the lives of our most vulnerable citizens  – they want to forge ahead with their blinders on regarding true costs – both in dollars and in peoples’ lives.

5.  Assessments and Quality Assurance surveys that have been mandated by law have not been completed or analyzed.  Regardless of this fact, these programs are considered “successful” – by what standards?

6.  One success story that was presented to the public is about an autistic man.  He lived in an RHC for many years and finally was becoming stable.  It was decided to transition this man to a “community” setting – this process took 2 years and many, many hours of intense 1:1 and sometimes 2:1 assistance and behavior support.  He did move to a home and a new job (doing the same sorting type of job but rather than in a sheltered workshop he was now supported in a factory).  Their story ended here -SUCCESS?  – well what they didn’t tell us was that this man only lasted a few months in the job at the factory.  Something happened – we don’t know what but he’s back to square one, more intsensive supports and searching for another job.  I don’t call this success – I call this a social experiment with this man’s life.

He was fine and his behavior was controlled and he had a job – I can’t imagine what this experiment, which DDD, DSHS, The Arc and other agencies call a success cost our citizens.

This is social experimentation done to our most vulnerable citizens?  Did this man have a choice?

They consistently remove posts from public social network sites of any posting that might question their platform.

I have too many of my deleted and censored posts to keep track of them.  I will post links to some of the more recent ones that have been removed.

Letter from a parent

Here is a letter that was written by Rebecca, Forrest’s mother.

Good Morning,

This email is a response to another parent on the autismking list,( ran by
the ARC) of course my email was not posted on their list. I am sending you
all my email, in hope that it will help.

When I ask for services for my son I am always told the same thing.

³We donot have services for non verbal aggressive autistic people and if your son is aggressive we will call the police to have your son arrested.² Now, not only is my son denied services most places that serve the rest of the DD population but now Forrest is at extreme risk to end up in jail if he assaults and, of course, Forrest will because that is the kind of autism he has. So, then they will throw a person who has autism and is non-verbal in a cell with bars with other inmates. We don¹t treat animals this way. But children like mine who are on the lower end of the autism spectrum are treated this way.

We have not seen ³Wretches & Jabbers² although we heard it was a wonderfulmovie. It is just to close to our own lives to watch. We find that many ofthe decisions being made are based on stereotypes left over from the days when all moms with autistic kids were called ³ Refrigerator Mom.²Thank-you for seeing what the truth about autism is as well as the struggles that parents with non verbal autistic children like ours encounter. Andthank you for recognizing that my son is a person who deserves to be treated with heart and as a member of the human race.

Glad you like the movie, and thanks for reaching out to me.

Rebecca

If anyone wants to cross post my email. Go for it.

Forrest is now a success story in my mind – knowing the  torture that he and his family have experienced at the hands of agencies whose job it is to advocate for our citizens like Forrest clearly illustrates the discrimination that is still being practiced in our lives.  Forrest now lives at Fircrest, one or our states 5 RHCs.  Since moving to the environment that supports him and keeps him safe, he has developed his  artistic abilities.  Forrest’s photography touches my  heart.