A Father Speaks

Who are the experts with regards to disability advocacy?  I believe the experts are the people who are involved with, love and care for our most vulnerable citizens.  These people are the families and caregivers.  The experts are not the ideologues that sit in offices thinking up ways in which they think our citizens should live.

Here is a letter from one of our experts – a father:

DDD Errors and misinformation

Due to continued reliance on the reports from DDD and DSHS, I am now writing daily reports informing our senators of the flawed data and analysis in the information they are receiving.  If anyone would like sources of the original documents and data, let me know – I have them.

The Olmstead Decision

I realize that our legislators are very busy trying to sort out the facts and many are probably not sleeping very much right now.  I certainly would not want to be in any of their shoes – but they are also not in my shoes nor have many of them lived the life of being a parent of a child with developmental disabilities.  Until you have lived it, it is very, very hard to even imagine what life would be like.  It’s easy to take a glimpse here and there and make assumptions but that cannot be generalized to what the total responsibility of caring for a family member with very intense care needs involves.

Senator Adam Kline is one such person who does not comprehend the intensity of care needs or the issues involved in supporting a continuum of care for our citizens with developmental disabilities.  Senator Kline references studies published by DSHS as reliable sources for cost comparison.  If one were to look at the original source, one would see how flawed these DSHS reports are.  Of course, that takes time and energy and our legislators need to rely on agencies to provide this information.  What do we, as citizens, do when these agencies themselves are part of the problem?

Yes, Senator Kline is correct in saying that this is not all about cost but that we need to address the issue of quality of life and the least restrictive environment.  To me, that is actually the main issue and it is for this reason that I fight so hard to maintain our continuum of care for our most profoundly affected citizens with disabilities.  Yes, there are many of our citizens with developmental disabilities that do much better in residential neighborhood communities – in fact, that is probably the best alternative for most of our citizens.  But, for some, that alternative is as if placing them in isolation, unable to interact with the outside world, at the mercy of a mostly untrained and inexperienced care staff and with little oversight to make sure that our citizens are being treated humanely.  This is the violation of human rights – not what Senator Adam Kline is talking about.

No one is disputing the issue that Senator Kline writes about with regards to “individuals ought not to be institutionalized when their needs for habilitation can be met in a less restrictive alternative.”  What he is really missing though is that for many, our state operated residential centers (RHCs) are the least restrictive alternative.  So it sounds to me as if Senator Kline is encouraging people disobey the US Supreme Court in the Olmstead decision by supporting moving our residents out of their community which is the least restrictive for them into a more restrictive community.

The Olmstead Decision

The Court based its ruling in Olmstead on sections of the ADA and federal regulations that require states to administer their services, programs and activities “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.”

Under the Court’s ruling, certain principles have emerged:

  • unjustified institutionalization of people with disabilities is discrimination and violates the ADA;
  • states are required to provide community-based services for persons with disabilities otherwise entitled to institutional services when the state’s treatment professionals reasonably determine that community placement is appropriate; the person does not oppose such placement; and the placement can reasonably be accommodated, taking into account resources available to the state and the needs of others receiving state-supported disability services;
  • a person cannot be denied community services just to keep an institution at its full capacity; and,
  • there is no requirement under the ADA that community-based services be imposed on people with disabilities who do not desire it.
This is the part that Senator Kline needs to re-read.  He seems to be missing this information when citing the Olmstead Decision.
For more information and letters sent to our Washington State Legislators, they are in the links section.

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.

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?