Only Anecdotal

As I mentioned in last week’s post, it was an exciting week to watch the changing healthcare world, and the long-term support service world that surrounds it, as well.

But remembering the idea behind this whole blog, I would like to talk about the visit I made this morning, before our office closed. Like so many of my referrals, this one came from my friends at the hospital. Now, I have often thought about the job that hospital case managers and social workers have to do, and I am not sure I would be able to endure the combination of witnessing human tragedy, being abused from many angles–including some patients, their family, or at times perhaps other hospital staff. Ethical considerations come into play constantly, around privacy and decision-making, and all of it is bound by the constraints of rules, most of which have something to do with the hospital (or after-hospital care) getting paid.

Unlike my colleagues, I have the luxury of walking out of dangerous or even uncomfortable situations. I also am not present (yet) when the people I see die. But the crisis mode of the hospital setting has a definite beginning and end. I am often the connector between admission and discharge to home. And so we attempt to link the two worlds somehow, with luck, if the right programs and services exist.

So, the man I met today must have been born during World War I, I realized, though I never would have guessed this had the hospital not given me his age. He had led a very active life up to a recent surgery, and was contemplating today any other possibilities for staying independent in his last years–because he told me that he could not imagine that he really had so much longer left. (I am not so sure; he seemed closer to eighty than to the century mark, even days following major surgery.)

But I mention this gentleman not because he made my day–and he did. He was a unique individual, as he had worked in hospitals and medical practices throughout his career, and furthermore had lived through the various hardships and good times that a long, full life ought to bring. It is unusual that I meet someone with that breadth of insight into the healthcare and social service system that he had. But it is not so unusual that I meet people who fall into various exceptions and restrictions, and other reasons that our “system” has to deny people needed and requested assistance.

So, I was dismayed–no, this is not an exaggeration–to learn on Friday that federal grant funding will be used within our aging and disability community to build “infrastructure” (a.k.a. bureaucracy). I have watched over the last four years as our own front lines have turned from a great cooperative effort for consumers about all their available options, to (for the most part) a fast-track into services at that front-line worker’s individual agency.

I know this is not always what happens, and I realize also that at times an array of options may be presented at the same time that a worker goes ahead and does an intake. At the same time, it is hard to imagine a more attractive scenario for a discharge planner who knows that a consumer over age sixty will need long-term care services, and can see someone immediately rather than waiting for an intake. It was never the intention of the program, but it makes the professionals and the agencies happy. The one left out of this particular loop, though, is the consumer. Again.

In so many ways it was inevitable that a good idea would become yet another funding stream for the same-old same old without a real vision of what we wanted to achieve. From the start, I have hoped that the goal was consumer-driven, creating a streamlined “no wrong door” for consumers–not only to our own agencies, but to the community as a whole. I thought that services themselves were supposed to be created, that options would increase as a result of the stories we brought to the state.

Instead, I watch a constant tug–still–for control. When I say the words “consumer control”, there still is, somewhere, a resounding “But…” lurking in the room, a caution for safety, a discussion about “what people need”, and ultimately, discussions about assessments and service plans that make me cringe the higher we toss these lofty and made-meaningless notions into the higher offices and commissions and governments, and away from the people who are asking for help.

Everyday that I have done this job over the last four years, I have met people whose lives and experiences inspire me. I have heard stories of sacrifice and endurance and compassion and love. I have seen horrible tragedies right here, right in front of me, seen people actually die from systemic neglect. And still, we have the nerve to tap into federal funding that will create yet another layer to wade through, all under the guise of  cooperative efforts and increased communication.

After watching the horses trot farther and farther from the aging and disability consortium stable,  federal infrastructure money will likely do nothing more than create more competition, and less cooperation. And likely, those who have the power now will hold tight to it, and the funding, as they maneuver to favor the programs and philosophies and rules that they already hold dear.

So where does this leave the man I saw this morning? Well, strictly nowhere. He will likely remain optimistic, as he seems always to have been, and likely still not quite eligible for this, definitely not eligible for that program. It should not be so complicated. And in fact, it really should not matter. The various eligibility questions, in our country, are barbarisms, statements that we truly do not hold all of our citizens as equals, when the very basic needs to sustain life are denied, constantly, because we spend more time talking about eligibility and cooperation than we do listening to–and giving– what people want and need.