Please Read and Call Speaker Frank Chopp

If any one of you believes in advocacy and supporting a continuum of care for our family members – it is critical that people realize that The Arc chapters and the DDC do not advocate for our most vulnerable citizens. Their advocacy stops at the door of a residential center.

The Arc and DDC advocate for consolidation and closure of our facilities. These facilities are the safety net for our family members. They are the only place that provide comprehensive care, have oversight and quality assurance surveys that are up to date. None of the community residential homes have this, the oversight is lacking, the nurse delegation program is verging on illegal among other issues.

Our state is out of compliance with Federal guidelines regarding the HCBS waivers and is at risk of not being recertified – which means that funds will be lost.

Today is the last day in legislature and we have been fighting over SSB 5459 – a bill which closes Frances Haddon Morgan Center, stops admissions to Yakima Valley School, denies services to children in these facilities and leads to closure.

Many are against this but since The Arc and DDC advocate for only those who can advocate for themselves, our most vulnerable citizens need to have people advocate for them. We are continually censored and shunned by these agencies since we advocate for a continuum of care.

Please call or write your legislator today to VOTE NO on SSB 5459. The best action to take at this late date is to call Speaker Frank Chopp’s office at 360 786 7920 and ask him to kill SSB 5459. The law is against Federal Law and our state could lose many services from CMS if this passes.

For all of you who may work through Seattle Children’s Autism Center, I presented information to them last week. Dr. Chuck Cowan is in the process of writing a strong letter against this bill.

This bill, if it passes will have many ramifications to ALL people with disabilities. It will decrease services to everyone. The Arc and DDC do not talk about that point but for the sake of ALL please ask your legislators to vote NO.

5 comments on “Please Read and Call Speaker Frank Chopp

  1. Sarajane Siegfriedt says:

    You wrote:
    “Many are against this but since The Arc and DDC advocate for only those who can advocate for themselves, our most vulnerable citizens need to have people advocate for them. We are continually censored and shunned by these agencies since we advocate for a continuum of care.”

    Everything is this paragraph is untrue. The ARC and DDC advocate for all people with developmental disabilities, by mission and by their calling. What you call “our most vulnerable citizens” is limited to the residents of the five residential centers. Correct me on the current census, but I estimate at 2,000 or fewer. There are easily 10 times that many people with DD in the state, many living at home with aging parents and needing state support, but on the waiting list. Due to the policy change nationwide in the past 20 years, many states have eliminated residential facilities and have moved to 100% community-based care. Do you suppose they have no “most vulnerable citizens?” Or perhaps they have found safe and adequate ways of caring for them in a more integrated setting in the community, as required by the 1999 U.S. Supreme Court decision L.C. v Olmsted?

    It costs so much more to house people in institutions, in part because of infrastructure costs and in part because of union wages. Preservation of jobs is always part of the argument, yet thousands of union teachers are being laid off in the same budget. Why are these union jobs, in particular, to be protected? Why are the other 90% of people with DD supposed to go without services for years?

    As the former director of a group home, inspected by the Dept. of Health for nurse delegation, and by DSHS for Boarding Home and Group Home certification, I can tell you that the oversight is constant and the paperwork is onerous. Your argument about lack of oversight is no longer true, if it ever was. Your charges about the nurse delegation program are not backed up.

    Group homes staffs are trained and are certified to care for all levels of people with DD, unless they are also ill and need nursing home care. There is a great deal of difference between illness and DD, as you know. The major difference between the two settings is that group homes start people at about $10.50 an hour, so that the state has outsourced this service to save money. Group homes have long advocated to have their rates raised so that they could lower their 49% turnover. Living wages should be the goal. If you truly cared about people with DD, you would be advocating to raise the contract rates for group homes, which house more people than the residential institutions at lower expense to the state.

    Finally, to increase your credibility, you need to stop claiming that closing residential institutions kills people. It’s not credible. No direct cause and effect has ever been proven. Many people with severe behavior problems actually get better when they have more choice over setting, staff, food and daily activities. This applies as well to nonverbal people. When you exaggerate and tell only one side of the story, you lose credibility. When you claim that severely disabled people cannot be successfully cared for in a more integrated community setting with more choice in their lives, you lose credibility. When you fail to acknowledge the directive of the U.S. Supreme Court, you lose credibility. Based on the experience of other states, it is possible that Olmsted applies to all residents of DD institutions. I believe that it does and that these institutions are illegal. At a minimum, they are outrageously expensive and deny thousand of others of services they deserve, which is the definition of unfair. The ARC should not be scapegoated for giving voice to these people and their families.


    • Thank you for your comments – I can tell that you put much thought into them. It would be better to actually look at what goes into the costs and how the figures are arrived at. I have learned that I cannot take anything from The Arc of DDC at face value since they do not tell the whole truth and do not advocate for those whose home is in an institution. Yes, these people are some of our most vulnerable but there are many that do not live in the intistitutions also.

      I can tell that you believe The Arc does live up to their mission. You say that everything I have written is false. Have you been censored? No, becuase your thoughts are right in line with The Arc so you would not be censored or shunned.

      If you go back and look at original sources and research true cost and services, the quality of assessment, needed supports you find a much different picture than you or The Arc show.

      What I advocate for is to serve the needs of the person. I also believe that having comprehensive care in a cost effective manner is a method that serves the most in the best possible way. That may mean that not everyone gets exactly what they want but as a whole the popluation is safe and healthy.

      Is it fair to all to spend a million dollars on two individuals so they live in the community but deny other’s critical supports? I don’t believe so but that is what is happening right now.

      If you take a look at the data and reports from “Money Follows the Person” grants you will find that all states are having problems with not enough trained staff, high staff turnover plus other issues.

      In your writing there are many false assumptions regarding what an institution is, choice and health and safety. I fully believe that care providers should earn more money – it is not an easy job by any means and I believe that our familiy members deserve humane and safe care. Unfortunately, I only have so much energy and time and cannot advocate for everything.

      Go back and read the Olmstead decision. It guarantees people choice. The Arc and DDC are taking away that choice.


  2. Gina Hughes says:

    Does this in any way apply to the word I was given by my son’s behavior therapist at Children’s Autism Center yesterday? I was told that we would be unable to continue services there after our scheduled appointments were completed. I was handed a number with no real details and the impression that I had no means of an appeal and it would not change anything. I am more than upset about this. My son has been there for over two years and since he is heading into adolescence with high functioning autism, a defiance disorder, anxiety issues and ADHD, I feel it is wreckless to alter his connection, the work that has been accomplished and the security my son has in knowing who he is talking to and what he can share.PLEASE, if you have any help, information or advice, all will be appreciated. Thanks.



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