Censorship and shunning of grassroots advocacy groups

Today I sent another letter to the DSHS “Let’s Talk” listserve regarding censorship and my comments to The Arc of King County Blog not being posted.  I indicated that I would post my comments here since they do not appear on their blog even though they were submitted.

My response to their posting of February 18, 2011:

I admire all those who are able to be self-advocates and appreciate all the hard work they do.

I also want people to know that there are many who can not advocate for themselves – that is what, we, as families and community members must do.  It is for this reason that I need to correct some information regarding those who live in “institutions.”

Our Residential Habilitation Centers are communities.  Did you know that DSHS is against any congregate care and that two SOLAs or group homes can not be on the same block and share services – that would be congregate care and that would not pass funding rules.

It is actually much more cost effective to utilize our RHCs.  The daily cost of care for a resident in an RHC compared to a community resident with similar needs and acuities is about $57,000 less for a year per resident.  These are the facts found within DSHS’s own records.

It’s time to tell people that “The Emperor isn’t Wearing any Clothes” and stop this charade.

My Comments in response to their posting of  March 30, 2011:

I greatly appreciate all the work that your agency has accomplished and realize that much work has been done and much more needs to be done.

I, though, need to offer a perspective also.  As a healthcare professional and parent of a child with a developmental disability, I am very passionate about humane, safe and healthy care for our citizens.

Do you realize that many who are not able to have their voices heard are being ignored by the very agencies and advocacy groups who claim to represent them?  What I see is that there is such a huge movement towards self-advocacy that those who are unable to make their voice heard themselves are forgotten.  The very treatment that prominent advocacy groups are saying that persons with disabilities endured in the past is the same treatment that these groups are doing to our most vulnerable citizens today.  This is inhumane and shameful.

I am appalled and outraged by the information that some prominent advocacy groups are publishing as fact. There is shunning going on against those who question any part of this agenda.

I realize there is a continuum of ability and disability.  Contrary to what some people may believe, not everyone is capable of being their own advocate no matter how much support they are given.

My son is one of these people.  I’m tired of people telling me that with “adequate” supports he can be do things just like other “normal” people.

1.  My son is not normal, never was and never will be – that does not in anyway diminish his worth as a loving human being.

2.  My son is extremely happy.  He can make all the choices that matter to him.  Those choices may not be the same as other people’s or may not matter to others but they matter to him.  Choices that some advocates say he’s not getting are choices that he would never in his life even think about or care about – those are values of others – not his values.

Do you realize that people who are living in an RHC community are in a community?  I heard from Susan Dreyfus that there can not be two SOLAs on one block – that means congregate care.  What this means to me is that DSHS and some advocacy groups want to tear apart a community and isolate the residents from the ability to participate in the community they call home.  Not only is this insane in a humane sense but cost wise, it’s incredibly irresponsible.  With this set-up, there could be no shared services.  Sharing of services means “congregate care”  But sharing of services also means cost savings.

Moving RHC residents to SOLAs and group homes will actually take away services from all.  The cost of care to maintain these residents’ health and safety in individual homes will far outweigh costs of congregate care in an RHC.

Addendum:

After writing to the Executive Director of The Arc of King County with my concerns (not a new issue between us), my comment to Lance Morehouses’ posting was posted Monday morning, April 4.)  Thank you.

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