Manic Psychosis tape

We hear so much about people with developmental disabilities.  Many advocates take family members to Olympia to meet our legislators.  There are many of us who have family members who are not able to go to Olympia to advocate for themselves.  I have been asked, if Fircrest is so great, why don’t we see residents down in Olympia?  This question was asked of me by one of the executive directors of a chapter of The Arc in our state.  Obviously she is unaware of the issues which most of our family members whose home is in an ICF/DD face everyday in their lives.

For an example, I am publishing this audio of my son.  What you will hear was very typical for every day in our house and would go on for hours and days.  Maybe after listening to this, that particular Arc executive will understand why ICF/DD residents are not able to advocate for themselves.

This is my reality.  Sound quality not the best (sorry) and audio starts at 1 minute

Letter to The Arc Chapters in Washington

I wrote this letter and sent to all Executive Directors of all Arc Chapters in Washington State.  I believe it is critical to support a continuum of care and hope that our chapters will be  innovative and come to understand the importance of this model.

We have some real work to do – given that one of the MAJOR concerns regarding safe and quality care is the lack of Direct Support Professionals.  We, as advocates, must push for training, increased wages to promote recruitment and retention of staff and support for staff themselves.  Having adequate staff is one of the cornerstones of safe care for our loved ones.

I attached the following documents to each email in hopes that the Executive Directors will decide to share the information and  join in support of a continuum of care.

Consortium for Citizens with Disabilities Letter

recruit and retain DSPs

Dear Advocates for DD

 

Dear Arc Executive Directors,

I am writing a letter to all of you in the State of Washington in hopes of coming together in support of a continuum of care for our citizens.  I believe that the division that has been created is only hurting those who we all advocate for.  Please join in supporting advocacy for a continuum of care model for our community members. 

A Continuum of Care model is Person Centered, upholds the U.S. Supreme Court Decision Olmstead and the U.S. DD Act.  This model serves to meet the needs of the individual with the needed supports to enable that person to live in the least restrictive environment for that person.  This is an individual decision which can only be made by those who know the person – hence, Person Centered Care. 

Please see the attachments regarding issues pertaining to these areas.  I do hope that our Arc Chapters in Washington may be able to take an innovative lead in the nation and realize supporting a Continuum of Care Model serves our citizens best.

Please feel free to distribute the material to interested parties.  It is critical, particularly in these times of more budget cuts, that our advocacy is united and best serves those we care about.

Thank you,

Cheryl Felak, RN, BSN
Disability Advocate – Parent
Because We Care – Beyond Inclusion
Seattle, WA

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.

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?


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?

Is there a monopoly on disability advocacy?

I’m outraged at the inhumane treatment that our most vulnerable citizens are receiving at the hands of some advocacy agencies and departments that are set up to protect these very citizens.  Not only is this segment of this population that is being ignored, their advocates that can speak for them are being banished from public discussions and stakeholder meetings.

There is a very active grassroots advocacy movement which  supports our most vulnerable citizens.  These people are dedicated beyond imagination, energetic, creative and innovative.  They have come up with many alternatives that will not only save money but enable more people to be served.  They want to share resources and expertise but their hands are tied by the monopoly that runs disability advocacy.

There is so much senseless nonsense being passed off as fact, yet if anyone questions it or asks for clarification, you are shunned.

I got a note from an executive director today in response to a question I had as to why I couldn’t comment on the public site.

This is his response:

Anyone is free to submit an article for consideration.  Articles we publish must be consistent with the values of the DD Act, namely self-determination, productivity, independence and integration/inclusion in all facets of community life.

We decided to have this blog under some editorial supervision because there is a lot of mis-information in the DD community which would not be helpful.  We hope to provide/publish information people can trust.

My response to him:

That is exactly my concern about this blog.  I believe that it is very biased in favor of those who can be self-advocates but does not address the needs of those who are not able to function at that level.

Within the population of people with developmental disabilities, there is a wide continuum of abilities.  Many of these people are not able to be their own self-advocates and where do these people fit into the scheme of this?  Many are in the community, many live in RHCs, but they are still people and their voices need to be heard.

When articles are written only from the perspective of people who can be self-advocates and what they are able to do and accomplish (I fully support them by the way) it really hurts the people who are not able to.  Also the family members of these people are made to feel like they are not the best advocates for their loved ones, that some agency “knows” better than the family.

These are my concerns and I don’t see how they can be addressed with out allowing something to be written with regards to them.

I fully believe that many of these agencies are good and do much great work but I also know that most do not advocate for the needs of my son and others like him.

How can we break down these walls and have a real discussion rather than being banished just like they are banishing our loved ones?


HOW CAN THIS HAPPEN?

How Can this Happen?

 

The scenario below is true.  The client was 14 at the time.  He has a rare genetic syndrome which causes a global developmental delay, early onset pediatric dementia (his brain is shrinking), behavior problems coupled with manic and psychotic episodes.  This was after his 5th hospital admission in 1 1/2 years.

He was on a Home and Community Based Service Waiver at the time.

12/2008 – Admitted to Seattle Children’s – 2 week admission (4th Admission for this child to Inpatient Psychiatric Unit)

12/2008 – readmit (5th Admission) – Psychiatrist recommended out-of-home placement for safety and health of child and his family. RSN stated “would not approve” readmission again

1/2009 – DDD Region 4 Children’s Manager told client’s DDD caseworker – “Do not offer them anything”

1/2009 – Discharge meeting at Seattle Children’s, DDD Psychologist, DDD caseworker, MD, Teacher, Nurse  and discharge planner present.  No respite or residential availability in DDD system.  Mental Health Residential placement would not be appropriate for him. MD solution was to medically restrain him with high doses of Thorazine.  Parents objected, had medications changed and took him home.

When asked about next crisis due to readmission being denied, only solution offered to parents by this group was to

“CALL THE POLICE”

 

It got worse before it got better:

He now lives at Fircrest, an RHC.  He’s actively involved in his community and family life.  He’s safe, happy, well cared for and healthy.  He is only on two medications and not “medically restrained” at all.  Why does DDD want to deny a safe and healthy life to those they are supposed to help?

 

PLEASE DO NOT LET THIS HAPPEN TO OTHERS

 

Support a Continuum of Care