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

Life & Work of Dr. Stanley Greenspan

Autism & DD Pioneer

Speaking from the points of view of a sibling who once was part of her sister's caregiving family-team, current guardian, nurse, and former developmental therapist, I fully endorse the basic maxim that learning must wait on maturation. What this means is that a person cannot learn something until his/her brain-neuro-muscular system is sufficiently mature to support the learning. With developmental disabilities, the challenge is: how best to support the brain-neuro-muscular maturation. And, as anyone interested enough to be reading this blog already knows, no two individuals are alike, so the approach to each must be responsive to the cues and clues provided by the person receiving the work.

Here is an excellent article honoring the life and work of Dr. Stanley Greenspan who, the article recognizes, made significant contributions to developmental work with children who have autism. I would recommend it to caregivers and family members of people with other developmental disabilities, too.

From my 61 year-old sister, Kathy's experience, I know that the article's use of the word , "children" should be generalized to "people" and the word "autism" should be generalized to include other forms of developmental disabilities.

Much of the article's description of Dr. Greenspan's methods also can be said of the Feldenkrais treatment (another approach to developmental, neuro-muscular/cognitive work) that my sister receives: Her diagnoses include cerebral palsy, cognitive delay level: 2-3years old & epilepsy. Even at her advanced age, her progress with this work has been consistent to that described in this article pertaining to children with autism. Credit must also be given to the reinforcement by her caregivers in the ICF/MR-NF where she lives and to the sensitive work of one physical therapist, in particular, who, early on in her work with Kathy, commented that she almost always sees cognitive & verbal progress in children when they are finally able to walk. It made sense to her that Kathy as an adult would be having a similar response.

Dr. Stanley Greenspan Dies,

Founder of Floortime & Developmental Approaches
To Autism Therapy
Source: AMDC Autism Examiner by Mike Frandsen April 28, 4:02

"Dr. Stanley Greenspan had a profound impact on developmental approaches to autism therapy.
At last November’s annual Interdisciplinary Council on Developmental and Learning Disorders conference in Bethesda, Maryland, Dr. Stanley Greenspan was walking and talking a little bit slower than he had in previous years. The reverence and respect that the audience had for Greenspan was palpable, and at the end of his speech, the crowd gave him a standing ovation. The people in the audience knew they were witnessing something special. 

Greenspan, the founder of Floortime and the Developmental, Individual Differences, Relationship-based model (DIR) for autism, died yesterday. 

Greenspan established the ICDL in Bethesda to advance the identification, prevention, and treatment of developmental and learning disorders. A message on ICDL’s website calls Greenspan, “the world's foremost authority on clinical work with infants and young children with developmental and emotional problems. His work continues to guide parents, professionals and researchers all over the world.”

 To read the full article, click on the title of this post. Readers comments beneath the article are also compelling.
Saskia

BUDGET NEWS: GOOD, BAD, & NEUTRAL

The Washington State 2010 Supplemental Budget has been released after a long, extended session. It now remains for our governor to sign it or send it back.

Readers from other states are invited to submit lists for their own states similar to the one, below, for Washington. It could give us all a sense of being part of something bigger and some orientation related to how our states compare.

Washington State:
State run-residential habilitation centers (RHCs)
Bad news:
~ 1% across-the- board cut over and above deep cuts sustained last year.
Good news:
~ only a 1% across-the-board cut and not the closure of 2 facilities as had been proposed at the onset of the session.
Neutral news:
~Funding is provided to the Office of Financial Management to conduct assessment of individual resident needs at each residential habilitation center. The reason this is neutral news is that RHC resident-centered, minutely detailed, needs assessments are done routinely as required by Federal law.

In home services:
Bad news: net 300,000 hour cut additional home care service cuts:
Good news: this represented a partial restoration; (It is too complicated for this list)

Bad news: $.13/hour decrease in agency in-home provider pay (about $52/year).
Good news: ~Authorization to add some people to the home and community based waiver services program

Bad news: elimination of the Home Care Quality Authority

Out-of-home "community" placement
Good News:
~ Funding for Expanded "community" residential services with faster phase-in for those listed in this biennium's budget.

Staffing, equipment and service
Bad news:
~continued freeze on state hiring, salaries, equipment and personal services contracts.
~requires layoffs and compensation of exempt and Washington Management Services employees (plan has not been developed.) ("Washington Management Services" is on the order of a union for management.)

Work & day programs
Bad news:
~Elimination of County funding for Jobs 21 partnership
Good News
~Additional funds for employment and day programs for students with dd leaving high school
~See next blog entry for unrelated new funding for employment & day programs for these youth.

Dental and healthcare services:
Bad News:
~ The Federal Health Resources & Services Administration (HRSA) budget reduces payment for dental services.
Good News:
~Other services were not cut.


How do you anticipate these changes affecting you or your loved ones, students, patients or clients?

Thanks in advance for sharing!
Saskia

From Mainstreaming to Specialty School?

Could this proposal have merit?

By Carl Orth | The Suncoast News NEW CHARTER SCHOOL (excerpts)
Published: March 6, 2010
HUDSON - Potential is a terrible thing to waste. So Emile Laurino hopes his concept for a new charter school will go to the head of the class. Families are looking for a different approach to education for their children with developmental disabilities, according to an "action plan" for the charter school. " They want something different than the traditional classroom," Laurino explained in the statement. "Once they graduate from school they want to go to work; they want to provide service and help others; they want to be an integral part of their community."
Laurino, the chief executive officer for the Center for Independence in Hudson, believes such a school could cater to teens and young adults with developmental disabilities ages 16 to 22. "Young adults preparing themselves to go out into the world of work" is how Laurino sums up the mission of the proposed educational facility "I'm hearing more and more" the need exists to fill this educational void", Laurino said.

"If enough people show an interest, the Center for Independence would work toward setting up the specialized school as a separate nonprofit corporation with its own board of directors," Laurino said. As a charter institution, the Center's school would be privately operated, but would be under the supervision of the Pasco County School District. Laurino, his staff and board members of the Center for Independence already belong to many community groups, including Seven Springs Rotary Club and Chambers of Commerce. So they might be able to draw upon local resources.
The charter school motto could become "Everyone Has the Right to Know All They Can Know and Be All They Can Be," the action plan concludes.
What do you think?