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John's usual--
I've been thinking a lot lately about the juxtaposition of wellness, choices, and independence specific to the DD field. There's a bit to unpack. Everryone that I've ever met that works in the DD field believes strongly in self-determination and that personal choice is an inherent right. However, I don't think our system does a good job of helping people to understand choice in a meaningful way over their lifetime. Meaningful choice should be more than what movie you want to see or what flavor ice cream you want, etc. It's well-intentioned; we want people to be happy. But, we treat choice as if it's 100% ala carte and ignore that there's a zero-sum aspect of choice. Choosing yes on one thing often means you are also making another "no" choice somewhere else. It is everybody's right to make bad and/or short-sighted choices. I believe that Ohio's DD system (which includes all of us) have to do more teaching and less enabling. I hope that Ohio can figure out how to do better building incentives for choices that correlate with independence living and employment outcomes and disincentivizing choices that correlate with negative health and economic outcomes.
I feel like wellness is a clear example of the paradox of choice. I'm 57. CLI serves quite a few people who are more than 10 years younger than I am, but who can not get into a minivan for physical limitations that they were not born with. 30 years of sedentary lifestyle and counterproductive food choices means that you are also choosing to be far less independent at 50 than you were at 20. Every day over 30 years involved many choices around menu planning and activities. However, because those choices aren't always considered in the larger context, they led to negative quality of life outcomes that the person might not have chosen if they recognized the A vs. B aspect of those (collective) choices. In the past food might have been needed as a distraction because there weren't many alternatives to television and comfort eating. But it's 2024 and that's no longer true. It's time to move.
A core principal of self-determination is that citizen has the right to make choices that I don't agree with. But, we need to do better ensuring that people are making informed choices and I believe that we need to make it easier for people to become their best, most capable self at age 20, age 40 & age 60. We routinely promote guardianship and/or payeeship-- but we're reluctant to weigh in on choices that are clearly linked with premature death and incapacity. Ohio spends at least $6 billion dollars every year on roughly 100,000 people with DD. It is an essential investment, but so far the ROI in terms of quality of life has been unimpressive. We're missing opportunities to teach so that people can make real choices about what they do now vs. what they are able to do 10 years from now. We need to do more to ensure that people maintain (and ideally) improve their ability to be independent over their whole lifespan.
Usual apologies for the soapboxing. I know that we all care and want the best outcomes for people. But the only way to effect change is to change something. Time flies. It's June already. 2020 took forever, but the last 3 years have blinked by. CLI will be looking for opportunities to get outside and enjoy the weather every chance we get. Have a great week!
John
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