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.

Finding Your Way Around

TO SEE OTHER'S INPUT: below each post on the right, click "links to this post;" or in the left side column, under "Labels," click the discussion link that interests you.

If there is no comment box below the post, click on
"# comments." It should open one.

TO CONTRIBUTE: add comments to posts in comment boxes &/or submit an article. Comments may also be sent for posting on your behalf. Email address as follows:

EMAIL: ddexchanges@gmail.com

MAILING LIST: add or remove name:
send request to email address, above.

WEB LINKS: to access other websites of interest, in the list to the right, just click on the underlined name.

FOLLOWERS: interested people, websites, organizations, businesses
who follow our discussions & choose to be public about their support.
Become a follower. Public support is a good thing!

Wednesday, January 27, 2010

Developmental Disabilities Exchange:

Everyone's Input is Welcome

This evening, I finally can invite everyone to participate in this blog. Until now, the "comment" section has been locked; and it seemed wrong to invite you to conversation and then prohibit it, so I've been waiting. I am new to this business of blogging, so I'm just feeling my way along.

Part of my background is as a facilitator of peer support groups. Our groups were premised on the belief that when each person truly feels heard, s/he has or can find all his/her own best answers. I am also depending on that premise as I begin this blog. Additionally, I am depending on synergy, the concept that the creative sum of a group is greater than the simple sum of it's members. We all have experience to share for the benefit of others. All of us have felt frustrated and mired, at one time or another, by the system. We can use this blog to ask others how they got past the same hurdles or strategize to do it together. Among us we have resources we perhaps do not even realize others are aching to learn about. And we all have experience that can help others broaden their perspective.

There has been so much division in our collective of dd advocates, caregivers and families, I hope to see healing of that rift. My vision for this blog is open sharing and caring, passionate dialogue which, while acknowledging differences, also respects them, bright, new ideas, and, eventually, a sense of safety, belonging, trust and mutual support: a sense of community and discovery of creative solutions.. Conversely, it will not be productive to disrespect the choices others have made for their loved ones or cast blame. People who feel the need to do that are encouraged to try on a sense of curiosity and interest, instead. It is amazing how transforming it can be when curiosity and interest can replace judgement. It takes real work, sometimes, to accomplish it, but it is always worth the effort.

Thanks for visiting. Please explore the site & leave something for us in the comment box. Your comment on something in the blog, a resource recommendation, your story, your self introduction, a need, whatever you are inspired to write.. It will help me to know you and it will give others courage, too. Thanks. "Comment Moderation" is turned on, but unless it is spam, or something truly crude or rude, I will post it as written. Saskia

Monday, January 18, 2010

RHCs: Keep or Close & Why?

Ever since Gov. Gregoire proposed in her budget to close all of the residential habilitation centers, (RHCs), I have been asking: "What would be gained?"

"Revenue savings?" Hardly! Even though the closure study missed many of the costs associated with "community" services for people with developmental disabilities, it did admit that RHC closures would cost the state money!

Liberation for RHC residents? From what? From their homes and friends? From excellent care, services and activities? How about from safe environments and programs assured by Federal audits ?

RHC residents are not prisoners. Their parents and guardians probably had to struggle to have them admitted. Despite the general rule that people receiving short term admissions (the only ones permitted), will be returned to "community" placements, some guardians are so happy with RHC care and services that they petition for long term residence.

"Better services for current RHC residents?" No.
For 3 reasons:
1) Most still living in RHCs are those requiring the most intensive services, more so than most "community" providers can offer. When DSHS last attempted to close Fircrest, it opened it's doors to "community" vendors who were encouraged to "window shop" for potential clients. Repeatedly and often, "community" vendors were reported to have said, "Keep Fircrest open: our facility cannot take care of these people."

2) RHC s comply with Federal Standards and are required to pass stringent audits; the quality assurance by the state for it's privatized, "community" clients is weaker.

3) Emergency departments, jail or mental hospitals are poor alternatives for people with developmental disabilities whose medical, psychiatric or behavioral conditions escalate beyond their "community" placements' capacity to accommodate them. RHCs provide the safety net and venues for their stabilization, in most cases for return to the "community".

So....what am I missing?

Saturday, January 16, 2010


I am guardian of my sister, Kathy, who entered my life as a brain injured newborn. I was 5 at the time. She was placed in my arms within the first hour after she arrived home. From then on, I thought she was mine.

Doctors advised my parents to "put the baby away and forget about her." That was never an option. Kathy would stay at home in our family. Period. In order to assure resources for Kathy, mother became very active, organizing parents and raising funds on behalf of children with cerebral palsy and mental retardation. At that time few services were available and public support programs were not even on the horizon.

Blind and unresponsive, Kathy met the "clinical" definition of a "vegetable" until she was 13 months old, when brain surgery, sub-dural drainage, liberated her to begin to engage with us and life. From then on, she pushed to make progress, therapy was found for her, and we all rallied to help her.

Helping Kathy learn was the theme of our lives. So much so that, as an adult, when an education application required an autobiography, my first attempt yielded only a list of Kathy's developmental accomplishments! A second try required me to rack my brain to dredge up the faintest memories of my own life markers.

When I was 13 and Kathy was 8, medical bills that could not be paid despite a 2 parent income, 24-7 care, and other stresses finally added up to divorce. One parent could not provide the 24-7 level care that had barely been accomplished by two, so, Mom tried live-in help, but was unable to find people who could handle an active, but physically unstable youth who had grand mal seizures, required constant, protective attention, medications and therapeutic support. Very few options were available for out-of-home placement, but she finally placed Kathy, during the work week, with a wonderful woman who took care of children with mental retardation in her home. We brought her home on weekends, and for the most part, I took care of her. After a time, though, the caregiver grew concerned that Kathy might be injured by the other, more mobile children, and, so, asked Mom to find another placement. She did, but it did not work out well at all. Kathy was neglected and abused; and so, after hospitalization, Mom brought her traumatized daughter back home to live. Kathy had been through so much, she cried and laughed uncontrollably & almost constantly.

By this time, I was away at nursing school. Mother, now remarried with a baby, had been able to hire a care-giver to help her. But her new husband had a heart attack, and his doctor advised her that he would die if the stress at home did not abate. Desperate, she talked a nursing home administrator into accepting Kathy; but they were not licensed to provide the level of care she needed. So, finally, she was forced to reconsider her vow never to place Kathy in an "institution." There were just 2 problems:
1. Admissions to the "institutions" were closed. 2. The supports Kathy needed in order to sustain the skills she had mastered were not available in Washington State's institutions. Still, she had to do something to save her husband's life; and Kathy had to have care. Out of other options, Mother prevailed on friends who knew the governor and his wife. With the governor's intervention, Kathy was admitted Fircrest.

The deal was done by the time I graduated. It was a nightmare, really. If RHCs of today were the same as Fircrest was, then, I would support closing them all.

I got an apartment and brought Kathy home to stay at Christmas. I thought if it worked out, I would find a way to keep her there with me. However, without the support she needed, she had already lost the skills that would enable me to care for her. I had been used to her walking and getting on and off the toilet with minimal help and being able to stay in bed without falling out. She had lost those abilities, and, moreover, without having been able to use her body, she was stiff and spastic, as I had never known her to be. I was devastated by my inability to manage her safely. Completely disillusioned, I took her back. I felt beaten and I could not fathom what else to do. It felt as if I was abandoning her. I am sure it felt that way to her, too. On one level, I was.

Fortunately, Fircrest improved. The Federal law, "Title Nineteen" was enacted: In exchange for improving conditions, providing programs and meeting safety, environmental and therapeutic program standards which were raised every year, matching Federal funds were provided to the state for the support of residents. Literally, if gradually, Title Nineteen transformed "institutions" from minimal-care-warehouses into exemplary, comprehensive care & resource centers, the residential habilitation centers (RHCs) of today. They are funded and focused for individually tailored support. And, today, as then, Federal audits ensure that standards are being met.

Kathy has never regained all of the skills she lost, but she has come a very long way back, and she is happy and comfortable. Remarkably, with the excellent support she is provided, she is still growing, recovering and learning at age 61.