Stop thisTrainwreck waiting to happen!

Please stop SSB 5459 – There is so much wrong with this bill that it will be hard to sum up in a concise and effective letter.  The critical issue is to stop this now and think about what the ramifications of such drastic changes will be if this bill is passed.

  1.  This bill is based on regurgitated false information from years past.  Senator Adam Kline continues to talk about “the 1970’s” with regards to our facilities today.  He is correct about the changes that needed to take place in 1970 but he’s far removed from the realities of the situation today and the recommendations from the experts of TODAY
  2. There are many in the community who are eligible and have requested admission to an RHC.  DDD has continually denied admission.  This is the only reason for a declining census in our RHCS.  There needs to be a survey sent out to all in the community who are eligible to inquire about their choice.  I believe you will find many who have chosen the RHC but their choice has been denied.  It is time that DDD actually supported and adhered to the Olmstead decision and respected people’s civil right to have a choice in where they want to live.  This is the very first thing that should be done before any or our RHCS are consolidated or closed.
  3. The reports that are generated by DDD are based on false information.  These need to be scrutinized.  I have researched the data and have found so many errors and flaws in the analysis of that data.  It is incredible that these reports are continued to be passed around as “fact” without anyone in the department questioning the concerns that I have raised.
  4. Rather than answering my letters regarding the fact that the “key points” are not supported by the data, DDD ignores the questions; Executives from The Arc accuse me of being “abusive” for questioning these reports.  As any person who has done research would know, it is expected to have people question your work.  When they question you, it is an opportunity to prove your point – not to call the questioner ABUSIVE.
  5. DDD reports that they have a Quality Assurance program which is up to date.  I will be sending  a synopsis of the issues I have had in researching the QA reports that should have been done, that DDD says they do, and the lack of knowledge about where they are, if they were even done and the multitude of players involved who do not communicate or know who has what report.  It’s a huge issue of “passing the buck” and nothing is getting done.  This NEEDS to be addressed before anything else can move on.  How can DDD say they have quality assurance when they don’t even have reports done, completed or available or even know who does them? DDD has not even complied with the requirements of The Roads to Community Living grant by completing the necessary surveys of the people who have participated.  The whole grant could be in danger without DDD following through with the requirements.
  6. People contacted regarding QA – still no data available – these people just keep sending emails around saying the next person has the data.  No one has it.  Players involved in this game:  (12 names which I won’t post here but sent to our House Ways and Means Committee members)  You would think that one of these people would be able to give a straight answer.  It’s time that DDD and the DDC are held accountable for their actions and lack thereof.
  7. DSHS is focusing their efforts on closing the RHCs.  The RHCS are about the only safe place for our citizens with DD.  The community homes which DDD so proudly talks about are a shambles – no safety or QA oversight, poorly trained staff with a high turnover, inadequate staffing levels and this is just the beginning.
  8. We hear about how wonderful the homes are in the community.  Just this past month I have been told by family members who have a grown brother and a 17 year old son in an Alpha Supported Living home and a SL Start home respectfully that they are not allowed to bring a visitor to the house.  What type of home is it in which as a sister or mother (or other family member) cannot even drop in to see their loved one or to bring a visitor to meet with them?  Why would they have these policies?  This is certainly not a home in which I would place my loved one. At the RHC, I can visit whenever I want, I don’t have to pre-arrange a visit, I can bring whoever I want to visit with my son.  There are no restrictions on my visitation with my own son.
  9. Rather than embarking on projects that are experimental and also on successful programs with people who are happy with those programs, it is time for DSHS and DDD to fix and bring up to standard the issues in the community.  This is where the energy and money needs to go.  These advocates talk about how they support those in the community yet their actions are contrary to that.  The problems with abuse, lack of oversight, lack of trained caregivers, and lack of services in the community will only be compounded by passing SSB 5459.

Please for the sake of not only our most vulnerable citizens who are safe and healthy in their current homes but also for all those in the community who will be hurt even more by the changes  that this bill support, DO NOT PASS SSB 5459.

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?


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.

Cost Breakdowns for RHCS – Most Cost Effective Care

With all the disastrous budget woes we are currently experiencing, now is not the time to irresponsibly start a social experiment with our most vulnerable citizens.  Looking through the reports for “Money Follows the Person” report for January – June 2010, (Mathematica Reference Number 06352.400)

It is clearly evident that we do not have enough resources for those already in the community – why would anyone even consider moving more people with more complex needs out of their safe, cost effective home?

These are quotes from the MFP report:

 

2/3 states reported difficulty reaching transition goals – listed in order of importance

  1. Shortage of affordable and accessible qualified housing
  2. Complex needs of the target population
  3. Transition candidates not choosing to reside in an MFP-qualified residence
  4. Family opposition, particularly among candidates with developmental disabilities.
  5. Shortage of slots in their HCBS waivers
  6. Contracting delays
  7. Cuts in the state budget
  8. Inadequate service capacity
  9. Lack of caregiver supports
  10. Staff turnover

 

Rates of reinstitutionalization : most common factors are:

l. lack of informal supports in the community

2. Lack of formal paid service or supports in the community

 

Emergency Calls for backup assistance:

34.9%  of calls were in response to direct service or support workers not showing up as scheduled

2.8%  were to address transportation to get to medical appointments

 

MFP continues to encounter systemic challenges related to state budget cuts, scarce housing options, limits imposed on Medicaid HCBS benefits and shortages of services and providers.

Washington reports that hiring freezes, furloughs and lay-offs have strained available staff resources and in some cases limited the MFP program’s ability to make timely transitions, conduct trainings, or perform outreach.

 

Given this very dismal picture of what life in the “community” is like – how could anyone advocate to move a person from their safe home into these unchartered waters?

The charts below indicate the actual cost to our state for the care in our RHCs.  This is the cost for comprehensive care with trained, stable staff.  This is what we need to maintain and expand on to keep our most vulnerable and challenging citizens safe and healthy in addition to sharing these services with those who already reside in another community setting.

 

 

 

 

 

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?