Tom Anderson of Shoreline Wa. Is Missing.

Anyone who has information on Anderson's whereabouts is asked to call 206-371-1048, 206-387-0571 or 911.

Developmentally disabled Shoreline man has been missing since Dec. 27

seattletimes.nwsource.com Click to read the full Times article with description of Tom, .)

Tom Anderson, 62, was last seen at approximately 5:30 p.m. on Dec. 27 at his home near North 160th Street and Evanston Avenue North, said Brenda Burns, who works for Ambitions, which provides services to disabled adults in King County. ( Click title of this post to read the full Times article with description of Tom .)
Thank you to Cheryl Felak for having posted this on Facebook.

HOW SAFE ARE OUR LOVED ONES?

No doubt, you already are acquainted with the recently reported sexual assaults on defenseless people with developmental disabilities living in Los Angeles. (Click the title of this blog to read the CNN report.) Over 100 hours of video taped sexual assaults were made available, anonymously, to authorities. How does this happen? Who protects defenseless residents?

I would be interested in hearing from people whose loved ones are cared for in residential venues in the general community how they find the oversight of them. Is it adequate? In the RHCs of Washington State, abuse is not impossible, but it is unlikely and, if perpetrated, it is likely to be caught and stopped quickly, due both to reporting requirements and reporting practices that protect the identity of reporters.

Who is there to catch and report such abuses in private, semi-isolated residences? Especially in situations where there are only one or two caregivers for several residents per shift? What safeguards are there to assure that such abuses don't get hidden for fear of making the facility look bad? In Washington, abuses that are reported are investigated, but the quality control system for general community residences for people with dd that should be protective of residents, in fact, depends on reports. This means the abuse must already have occurred!

A recent law requiring background checks for caregivers is a step in the right direction, but "community" caregivers' wages can be very low, meaning that young people, barely out of high school, may be the only people able to take such work. When this is the case, the records of young offenders will have been wiped clean.

Issues of safety and quality assurance are major problems that would have to be solved before I would ever be able to consider moving Kathy, my sister, from an RHC.

What is your experience &/or perspective?
Saskia

HELLO AGAIN

I have been silent on this blog for some months in large part because I have been struggling with an internal conflict: Lofty Ideal vs Reality. My desire and belief that we, as advocates for people with developmental disabilities should be able to come together and, taking into account our differences, work out mutually agreeable systems for providing the best supports for all concerned vs the reality that some organizations, biased bureaucrats and elected officials are dedicated to closure of state-run campus communities for people with dd so that they are not available even to those who need and want them. Often they cite horrific conditions of such facilities in days long bygone, but usually they claim that too much money is spent on people in residential habilitation centers (RHCs) . What I hear, listening to them is that they don't think the people who need the services in the RHCs are as needful or deserving as those higher level functioning persons who live in general community settings. The subject of income for community providers is usually not discussed nor is the economy of scale value of the RHCs.

Because those people use their organizations and positions to push to have RHCs closed, I find myself in the position of defending RHCs. Finally, I have decided that it is important to use this blog as a resource to put out the facts and perspectives that I and others find salient to the discussion. So, here I am back, again inviting you to join in discussion, hoping that you will write, not just in response to what you see written, but also to initiate topics that are important to you. You can do that by sending your writing to me for publication: ddexchanges (at) gmail.com.

Saskia

The House Where Kathy Lives

MORE THAN JUST A PARTY

Hawaiian theme, marathon kareoke, shy smiles and out-loud laughter, home cooked potluck, old friends, family, professional and regular staff dropping in, and eventually, great giggles from Kathy as she whirled in her dancing wheelchair: The party at Kathy's house started outside on the covered patio, but came inside as breezes blew cooler.

Twenty years of familyhood at Elm Hall is something to be celebrated! Though a few residents have moved to other houses, the manager who opened the house and one AC-3 ("attendant counselor" supervisor) along with 3 of the original residents are still there. Elm has been home especially to medically fragile people (with dd); and so it is not surprising that in that time, several have "gone on to watch over us," as" Manager Mom" put it. (I am calling her "Manager Mom" for this post because I have not asked permission to use her name; and though she does manage the staff and their care of residents, her role is very much that of "Mom." She shows the love of a good mom to residents and staff, alike. Somehow, everybody gets what they need. )

Today, for the first time, I heard about the preparation for Elm's opening 20 years ago. From Manager Mom's speech: "One challenge was: How do you find staff who want to work in an area with total care, fragile people, lots of lifting and all wheelchair?" As it turned out, just enough people really wanted to work under those conditions, and they were just the right staff for the job!

This was the beginning of a housing change at Fircrest; and Elm had just been remodeled to accommodate half as many residents as Fircrest had formerly housed together. The conversion to nursing facility would follow soon after. A careful selection process had occurred so that the right folks would be transferring to the new house. They were to move all-together; so, for 3 months, the entire new staff worked side-by-side with their usual caregivers in order "to learn all of their idiosyncrasies, what they needed and liked in their daily routines as well as how to meet all of their medical needs." This also gave the residents time to get to know and trust their new caregivers before changing environments.

When Kathy moved there from another house on campus about 8 years ago, staff were oriented to her very extensive needs in a similar way. Manager Mom first learned every little nuance of her care, wrote procedures and trained staff, often one-on-one, so that Kathy absolutely got what she needed in the way that she liked and needed it. She is loved there and she feels it. She has been truly blessed to have had the same, wonderful manager-habilitation professional (HPA) and direct caregiver team for all of that time. A few have left and a few have taken their places, but turnover with it's accompanying disorientation has been minimal.

Just one parting thought. As a nurse, I know that having family around can be stressful, especially if they are like I am, wanting everything to be perfect for their loved one. On the other hand, as family, it was essential to my peace of mind to be there on a daily basis to be sure the details of Kathy's needs were attended to in the right way. Manager Mom handled me and my daily requests wonderfully, almost always accommodating them and/or helping me understand why not if she could not meet one. Problems never went unsolved. When, eventually, I did not come as often, I had confidence that Kathy was in the hands of people who knew the importance of each task and, truly caring about her as well as feeling supported, themselves, would not short-change her in their hurry to accommodate all the other, equally important needs of everyone else in their care.

As you might have guessed, I am extraordinarily grateful.
Saskia

Where are the Parents?

This essay is an honest portrail of life of a parent with a special needs child - read this and try not to cry.



Where Are the Parents?
By Sue Stuyvesant, Parent

Hey everyone. For those of you who don't know me (I'm only an occasional poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder -- and CUTE! OK, now for the reason I'm posting.

To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?" I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around.............

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive!

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.

Sue passed away in October 2003. Michelle passed away a week before she was to turn 18 in September 2005.

Advocacy Concerns

This is an abbreviated version of an open letter to people who oppose inclusion of Residential Habilitation Centers (RHCs) in the continuum of services for our family and community members who have disabilities. I felt the need to write it after receiving an extremely misleading Action Alert opposing HR 1255 (HR1255 provides a process by which parents & guardians, on behalf of their children/wards, may opt out of class action lawsuits with which they disagree.) Also, I found the documentation they provided in response to my questions to misrepresent the Supreme Court Olmstead Decision. Actually, "Olmstead" does not say that anybody is required to live in a specific place. Instead it affirms the right of an individual to live in the setting that best suits him/her - be it a private home, group home, institution. In so doing, it affirms the role of institutions within a full continuum of care.

I respect the energy and commitment that you all have to your causes. What I don’t understand is how, as strong advocates, (personal and representatives of public agencies) , you can work to deny or diminish services to people with such severe and complex needs within the DD population. I could never envision closing RHCs because I see the necessity for their existence. If you actually went, toured, met and spoke with residents, family members and guardians, you would see that each RHC is a community as well as the community of choice and safety for many people. I believe you would come away recognizing their critical role in our community.

Trying to take this choice away appears to dismiss their residents as not worthy of being safe. I saw this even before our son was in need of the services. When he was eleven, I would not have considered institutional placement for him but I would not have cut that option off for those who needed it. I realize that there is a wide variation of needs and just because one person with DD does not need those services, it does not mean that no person with DD might need them.

As our children age and change, different issues arise. As a parent who has lived through it, I can say that a dual diagnosis changes the whole scenario of needs. Care and supervision for safety becomes extremely complex, demanding and person intensive.

The estimate of the incidence dual diagnosis, (dual diagnosis is developmental disability and a mental illness diagnosis) is between 30-50%. (NADD – An association for persons with developmental disabilities and mental health needs www.thenadd.org). Often in speaking and advocating for people with DD one forgets about this extremely extra complex group of people.

Our son is very active in community events both inside and outside of the RHC. He is a well known participant in the Seattle Parks and Recreation Specialized Program – both the Saturday Activities and Day Camp. He participates in neighborhood celebrations and concerts, attends church every week and many other activities.


I invite you to join me on an RHC tour, to meet him and learn why an RHC is the home of choice for him and others with such complex needs that they can only be managed in an RHC community.

Please, do contact me – I’d love to have a discussion, take people on tours of Fircrest or Frances Haddon Morgan Center, introduce you to my son and talk about how we can come together to truly advocate for ALL people with disabilities.

People may contact me personally at cherylfelak@msn.com

"Retarded" Grandparents

I have been troubled by the semantics debate. I agree it is important to be respectful, and equally important that words portray accurately what is meant, & most importantly: we all need to recognize that people who taunt others with labels are, themselves, rather intellectually, emotionally, and socially stunted; and we can't legislate against that!

I found this to be a refreshing break: humor that doesn't demean anyone. Below is a tiny chuckle: just click on the title of this post to enjoy the full laugh!

" After Christmas, a teacher asked her young pupils how they spent their holiday away from school." One child described his visit with his grandparents:
"My Grandma says that Grandpa worked all his life to earn his retardment and says I should work hard so I can be retarded someday too." " They used to live in a big brick house but Grandpa got retarded and they moved to Batemans Bay where everyone lives in nice little houses, and so they don't have to mow the grass anymore!"