Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

Toward this potential, DD EXCHANGE is for conversation, civil sounding off, sharing of stories, experience, information, resources, and inspiration, giving and receiving support, and creative problem solving.

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Monday, April 11, 2016


April 11, 2016:  Response by Saskia Davis to S. Frame Invitation for Viewer Comment Story

Hello, Susannah,
This is a new comment for publication in your story on comments.

About half of the homes at Fircrest School are in it's campus-based  Nursing Facility.  In  their  closing remarks, Feb. 4, this year,   Federal Standards Auditors  referred Fircrest's Nursing Facility as "the cadillac of nursing homes."   This year, Nursing Facility auditors could find only one small area to cite for improvement.

The other  homes are in the Intermediate Care Facility.  Last year, new auditing standards were the cause of citations that resulted in  admissions  holds being elected by Washington's  3 state-operated  Intermediate Care Facilities'  administrations. Given a choice between risking decertification by being re-audited in 90 days or taking more time to develop programs that they could be sure would meet the new standards, all of the RHCs chose the latter option, even though it meant that admissions would be frozen for the length of the time until  re-audit was requested by each facility.  Fircrest School is now ready with it's newly developed  programs  for the reaudit. The auditors do not announce when they will arrive, but they are expected to return soon.

From the point of view of parents and guardians of RHC residents, the fact that, historically and currently,  the Federal auditing standards are frequently raised is a good thing. It means that "institutional" care and quality of care  keeps getting better and better. Because of the audits, we sleep better at night.  We worry that there continue to be fewer audits and by lower standards in the community-at-large residences that are operated by state supported businesses.  Residents of those facilities deserve the same protections as those afforded RHC residents.

Thanks very much, Susannah.  I'm looking forward to your  story featuring our comments.

Saskia Davis, RN, Family Guardian


April 11, 2016: Response by Duwane Huffaker to S. Frame Invitation For Viewer Comment Story

Dear Susannah:
I worked at Lakeland Village for 37 years.  During that time I was active in the Washington Federation of State Employees.  After I retired I became vice president of the Lakeland Village Associates.  As an RHC advocate I find it rather sad that so many are willing to deny the rights of those who desire services offered within our Residential Habilitation Centers.  It's as if the folks living in our RHCs are second class citizens who don't know better.  During my Union active years, and afterward, RHC advocates have expressed our willingness to work with all involved parties to improve services for all people with developmental disabilities.  Our condition that this be on a live and let live basis definitely meets the test of reason.  Time after time the anti-RHC crowd refuses to fully accept the rights of those who want RHC services.  This does not enhance the eNvironment for all people with developmental disabilities.   We believe in choice.  No one should be forced to live in a RHC who does not want RHC services.  But choice is a two way street.  No one wanting RHC services should be forced into community based services.  In the Olmstead Decision the U.S. Supreme Court recognized that some will require RHC level services, either permanently or temporarily.  The right to RHC services, if qualified, is established.

NOTE:  this email is for publication and can be used in the viewer comment story.

Thank you,
Duwane Huffaker
Vice president LVA


April 6, 2016:  Response by Elizabeth Jackson to S. Frame invitation for viewer comment story

Ms. Frame,

Your series has been disturbing to those of us who found nothing but trouble with our developmentally disabled children in the community setting, and finally had found some peace and hope at Rainier School.  Think of being the parent to a retarded, autistic adult child, diagnosed at the 3 to 4 year old level, being called in the middle of the night to come get that person because she had become frustrated and torn up a bedspread.  Then that same adult child being dropped off at Harborview to await a bus to Western State Hospital with nothing more than her father's work phone number pinned to her coat and a plastic bag with her belongings.  Think of visiting that adult child in the Western State setting of mentally ill patients, who is scared because she does not fit in there in any way, and the wait of 2 to 3 months to find another placement for her.  Think of visiting her in another community placement where she was drugged so heavily she could not respond to us and spent the entire visit shaking her head trying to shake off the drugs.  That institution also sent her to Western State Hospital, so we had two sessions of that.  Think of visiting her every weekend at another community placement, being told every time that she was doing just fine; then getting a call from a hospital psych ward that she had been dropped off there because she had torn up a pillow.  Her autism makes it impossible for her to vent her frustrations and she will occasionally tear property - usually her own clothing.   The trouble always seemed to be when she tore something that was not hers.

The hospital stay saved us; they worked to help us get her into Rainier School, where she has a job that makes her feel productive, friends in the same cottage she has lived in for years, can self transport around campus, including going to the canteen for her beloved can of pop.  Her behavior issues have improved considerably because they work with her, and they keep her medication level to the lowest possible level.  This is reviewed annually and we are notified immediately if there is a problem and given the opportunity to work with the school; however, we are never threatened with her not having a place to stay and she is not sent away.  Her father has died, and I continue as her guardian along with  my daughter.  She is glad to see us when we come, but ready to go back to her home after the visit.  That is the best we can hope for.

Community placement is undoubtedly good for some DD residents, but not for all of them.  Destroying places like Rainier School would be a terrible disservice to residents like my daughter and others like her.  Please find a place for this information in your investigation, and give us a voice.

Elizabeth Jackson


April 6, 2016: Written by Paul Strand in response to S. Frame invitation for viewer comment story

Dear Ms. Frame,

There is a broad spectrum of need among people with developmental disabilities.  Most live at home or with others in a house or apartment.  A few, about 4%, require closer care in one of our RHCs; what you call “The Last of the Institutions.”

They are not as they often are portrayed. They are not fenced in, there are no large dormitories or big buildings to live in, and no one is isolated. There are doctors, nurses, therapists and caregivers on duty at all times.  Best of all, it costs no more to provide campus based service than it does for community provided services.  DSHS has agreed with this, where close care is needed.  Even the United States Supreme Court agrees (Olmstead Decision, 1999)

Several years ago we replaced the so called institutions with community homes. You interviewed some of these residents, who are happy to be on their own.  But for those with need of more intensive care, we built homes with individual bedrooms, kitchens and other amenities, much like a house on any American street. These amenities are difficult-if not impossible - to duplicate elsewhere.

Instead of degrading the RHCs we should be thankful that we have them.  Not all states are so fortunate.

Paul Strand, President