Only Anecdotal

I began this blog several years ago when I was working for the Metrowest Center for Independent Living in the Options Counseling program. It has been nearly fifteen years since that program began as a pilot, and it is still up and running, a regular part of centers for independent living and elder service agencies.

Back when we were getting started, the program was exciting. Originally intended to be the link between people at risk of nursing home placement and the home services they needed to avoid it, Options Counseling was not as easy as it may have been if those home services had been funded, but it gained a ton of hoopla nonetheless. This is the way these things so often work out–much ado and an utter lack of what was intended–but I gained valuable experience in creative problem solving and community outreach to make things work for people as much as possible. I also learned when to tell people the bitter truth.

My next work for the Canadian government was also an exercise in problem solving, with the gratification of having the tools I needed to get the job done, at least most of the time. The burnout and stress I felt in Options Counseling were replaced with a warm sense of accomplishment. There were hiccups and complications, but nearly none were insurmountable. In fact, we managed to meet our clients’ needs relatively quickly, and with a touch of friendliness that warms my soul to this day. Even on the busiest day, I never felt unsafe in that position the way that I have in many other roles. The people who needed our help all had a story, and many days I felt that we were building a case to prove an urgent need combined with an identity that qualified for the ask.. I loved it, really, and I enjoyed the people we met.

Lately I have been working on solving problems, too, but life in the private sector of the disability world is yet another thing. Financial resources are sometimes nearly limitless where I sit right now, and yet, the human element remains. We live now in a time of scarcity of service, on all levels. I say this not from a space of post-COVID pessimism, but from all the stories I hear and the things I see from those people in the thick of things. There just isn’t enough–not enough people willing to do the jobs, not enough jobs, not enough programs, not enough listening. Money helps–a lot–but too often, there is just nothing left to buy.

I have not collected the numbers necessary to run data analysis at scale. Being out in the world talking to people nevertheless leaves an impression. In the years I have collected these anecdotes, I have noticed a few things.

1. The US healthcare system offers amazing innovations and opportunities, but is inaccessible to many people from a practical, financial standpoint. This is not new, but it has gotten worse.
2. Money does not solve everything. But it helps.
3. COVID-19 was a shock to everyone, even the people who expected it. It raised awareness of our lack of preparedness. I feel that relief not to think about our masked days all the time now, but the resentments that came out of the emergency seem stronger than the lessons we learned from it.
4. People are living longer with chronic diseases and disabilities, and we are not ready to take care of them. This is no surprise. The fact that the infrastructure bill ended up removing remedies (and actually making it worse for providers) is shameful, to say the least.
5. It is tempting in helping professions to make referrals and call it a day. What is available on paper (or on google) is rarely the reality, and unfunded programs and waiting lists frustrate people who need help now. Better to tell people the truth than to send them down a rabbit hole.

I struggle with my anecdotes, and with the value of the stories I collected over the years. We grapple now in our media with non-truths and rewrites, and I fear the confusion and divisiveness. It is hard to listen to all sides, harder now, and yet, we share a common thread as human beings. As a non-fiction writer and reader of tales of all sorts, fact-checking matters, but data sets do not always tell the real story.