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!"

Are DD Growing In Numbers?

I find the following statistics staggering!

"One out of 10 children born today is diagnosed with a developmental disability including autism, cerebral palsy, mental retardation, and Prader Willi. One out of every 100 children is diagnosed with autism. Eight out of 10 families raising a special needs child is experiencing divorce, and a disabled child is three times more likely to experience child abuse than a child without special needs." by Alan Duretz, July 6, 2010, writing in the Sun-Sentinal about groundbreaking for JAFCO Respite and Family Resource Center for Children with Developmental Disabilities. (Just click on the title to read the full article.)

Are the numbers of people with dd increasing or have there always been so many and society's awareness expanding?

I am heartened to read creative approaches to meeting such need.
The JAFCO plan sounds comprehensive. Is their approach unique?

Do you have related experience? as family who has used such services or as provider or team member who have offered them? I am so interested to hear what is being offered: what is successful and why, not successful and why, too.

Kathy's CARE Evaluation

OK, I admit it; I think Wa state should be utilizing it's resources differently to maximize the services to people with dd in "the community" while retaining RHC (residential developmental center) services options. So, I found cause for optimism in the long-overdue budget proviso passed by the legislature, this year. Had the governor not vetoed it, it would have funded a comprehensive study of the needs and costs for community services, statewide, providing answers to cost questions that never have been answered and without which, data for planning is skewed. Before running out of ink, she managed to effect, instead, a requirement for assessment of all people who live in RHCs...just in case any might want to move out of their RHC homes to "the community?"

Today, I learned that this measure cost the state no money because the evaluations are being done by case workers, already on the payroll, who have been been assigned evaluation duties in addition to responsibilities for people on their case loads, already. Who knew they would have such "surplus" time on their hands? Or is everyone else, simply on hold awaiting completion of these evaluations?

DDD's CARE tool is the medium of evaluation. Several years ago, assessments called "CARE" assessments were performed on RHC residents. They wasted time and tax dollars, as the tool was designed for a "typically-abled" (or disabled) geriatric population, not for people with complicated physical and intellectual developmental disabilities. So I was less than thrilled to learn it was to be the tool of choice, again.

However, I was in for a pleasant surprise at my sister, Kathy's evaluation. The tool had been simplified and updated and the caseworker who administered it was genuinely interested in reflecting accurately the time and resources that would be needed if Kathy were to live in "the community." The 2 hours that had been allotted for the job proved inadequate, in part because my lack of experience with the tool caused me difficulty in boiling down the answers to simple terms for the sake of the tool. Our evaluator, though, was masterful. He listened carefully to considerations, and summarized them accurately; and our HPA (Habilitation Plan Administrator had an excellent grasp of the tool as well as Kathy's condition and care needs. The evaluator made notes in order to explain the numerical values that were supposed to reflect level of care, frequency and time required for each care task.

Having written that the allotted 2 hours was not enough, I realize that, had I not been there, raising my questions, which sometimes caused more in-depth consideration, it might have been effected in less time, but that might not have been to Kathy's advantage. Given the immense time pressures that HPAs and AC (attendent counselor) managers are under due to budget cutbacks, I think my presence as Kathy's guardian/sister was very worthwhile. My focus was on making the hypothetical community placement include all the considerations that would have to be accommodated. As guardian/family, with no bureaucratic time pressure, I could help keep the resulting hypothetical "snapshot" realistic. This is not to say that in my absence, Kathy's HPA would have slighted her in any way; he never would; He is wonderful and I am always grateful for his support of her and generosity with time, no matter how pressed he is. But a parent/guardian has the right to cause as much time as is required to consider all facets of a problem; whereas an employee must do his/her best to accommodate whatever time constraints and work load his employers impose. The upshot? I am glad I attended and recommend that other parent/guardians do so, too.

We were asked to look at what would be needed in order to effect each aspect of Kathy's care if she were to live in "the community." The questions and the HPA's answers, knowledge of the details and reasons behind each aspect of her care plan helped me realize that what the staff do with efficiency at Fircrest would take longer and be more difficult (if even possible) in a "community" environment where resources like home, transportation, medical services and the array of therapies, as well as her adult training (work) program, would not be so easily accessible all on one campus .

Toward the end, the question of goals arose. Being a little brain-dead by then, I had to refer him to Kathy's IHP, (Individual Habilitation Plan, a required comprehensive assessment and plan document produced by her Fircrest inter-disciplinary team (IDT). As IDT members, we as parents/guardians may take for granted the thoroughness of IHPs, but, for those who aren't familiar with IHPs, they cover every facet of the resident's condition, as well as care and support needs, described in detail, with a goal named for each and a plan for implementing it. Parent/guardians are part of the IDT and, as such, help create the plans. I was extremely pleased with the obvious positive reception of the IHP goals by Kathy's evaluator. Having looked through it, he was able to recommend that the goals established by the team continue to be supported at Fircrest.

One other thing that I think was important, though it may not always be, depending on how obvious the disabilities of the resident are: We had Kathy in with us for the beginning of the session so the evaluator could get an idea of how really disabled she is. Then, toward the end, she was back, this time in the area, but not as part of the session. From a distance, it happened that he could observe the rather substantial one-to-one support being provided for her self-feeding, and, still later, some therapeutic play designed to support arm/hand range of motion and coordination.

I hope this description will help others whose loved-ones have yet to be evaluated. In particular, I hope it will inspire consideration of the increments of each task involved in providing appropriate support. It was tempting to look at the general type of task and ballpark a numerical answer, but often when we broke down what was involved, it became obvious that a lot more time would be required. This recognition helps prevent assumptions that could lead to underestimation of the resident's support requirements.

Realistically, I do not think the same picture could have been painted in the allotted 2 hours; and I am grateful that we were allowed the time needed to think through the details of the questions.

Please feel free to comment. Whatever your thoughts, ideas, experience or suggestions, please share. I can post it for you or you can use a comment box at the end of this post.
Saskia