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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Thursday, July 1, 2010

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.