Only Anecdotal

No numbers, just stories

Archive for January 2013

Dream On!

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I was meeting on Sunday with a visionary, a person who had a bigger idea of what would make a vibrant, living, artistic community, and he was describing the various challenges he has found with the people who spend so much time rooted in the “reality” of things as they are right now.

It’s a frustrating thing to have a great idea of what would make things truly great, only to be reminded, constantly, of all the good things that we can do right now. It feels sort of like having a bake sale to build a new school: laudable, perhaps, but a great effort that entirely misses the potential of those precious moments, and dreams small.

I think this often, as I think about tests and pilots and demonstrations that have a great vision in the beginning to solve a problem. The ones I have most encountered in my recent career world have something to do with access to services, and facility of navigating systems that can ideally fund the most basic needs, level the playing field so to speak for people who need wheels to get around, or an extra set of hands to pick things up.

There always seemed to be some prevailing notion that everyone can have adequate assistance, if only the system were simplified into one easy method–or no wrong method, at any rate.

I sometimes think back over the last few years, and wonder if the numerous individuals who benefited from that ease of access to services are now living better lives because of it.

I ask this now, as we contemplate the future of healthcare. I ask it, because I see the future efforts at developing new infrastructure, building new programs, and I think about the last several posts, in which I lamented the utter lack of essential services for various age and disability groups. All the knowledge and navigational assistance in the world is only helpful in so far as it stops an endless maze of pointlessness. And perhaps the visible hole of need brings along enough anger in its wake that more of us feel motivated to speak up.

We need a bigger vision. But it really is more than that, as I believe that the vision is clear enough and common enough to many people who have worked in or personally encountered the health and human service system. Dreaming of some world where we can respond quickly and efficiently to the obvious needs for housing, transportation, and personal care is not a waste in itself. Only, we do not need more focus groups or advisory committees; we need to start building. Action is bold, and it is unlikely. But it is absolutely essential to stop wasting time and money on securing our comfort zone. The small efforts may feel good in the moment, but really, when they keep us from focusing on the big picture, all they really do is waste our energy, and make us feel good about it.

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28 Jan 2013 at 7:50pm

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The Buck Stops Here

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Now, I don’t make the rules that exclude people, the entitlements that are available only in specific circumstances, not so much by need as by some other criterium, among a very few, select criteria. I also was never granted a magic wand, let alone fairy dust, to fabricate the accommodations and assistance for people who have the misfortune of getting sick, hurt, or old in this country. It may well be better here than in a lot of places in the world, but most people are bitterly disappointed, especially those who have long believed in our great country (perhaps even fought for it), when they learn how little help there really is, and just how desperate life can really get.

Now, this is not a cheerful message, I realize, but then, this has not been a cheerful sort of week–or month. It seems that something has happened, whether that is the flu, or the continuation of economic stress, or simply an aging population. But people I saw years ago keep returning, sometimes in far worse condition than they were awhile back.

That said, it seems that professionals I know are pretty aware of many of the programs and services that are available. It is great that waivers and services that were once a semi-secret now pop immediately into the minds of discharge planners and social workers and nurses and counselors of all sorts. Once in a while, I can run through the possibilities and tell someone something new–or I can help make the connections once a person transitions from one setting to another. But once–or twice–or three times–in a while, I meet individuals who have my name on a long, long list of “try-here” resources. Sometimes they have been told that I can work magic, find housing, or psychiatric care, or transportation out of the normal area boundaries.

I am no magician. I am no saint. I try, I know my stuff, but I also cannot lie, defer hope to the next person when I know full well that you and your family are in serious trouble if you are 53 years old, have a demanding job and a spouse who has not worked in ten years, two kids in college and a mortgage–and have a stroke.

Truth is, I never want to tell a person how amazingly limited the options really are in this situation, but I do tell.  Often.

I do not want to tell a person that even though he has lost his entire life savings and home, he still has too much money to get help. I do not want to tell someone that it is a shame she is only 58, because if she were 60, she could get that help, that waiver, that thing that would change everything. But I do tell. I tell the truth.

We have an enormous responsibility when put in the position of providing assistance to people in crises. We want to help, always, I know. But I wonder, more, if at a certain point, the responsibility does not shift in each among us professionals, from the stage of vainly digging for exceptions to the rule, to pushing harder to challenge the rules–or moreover, the mindset behind the rules.

I look now at the enormous changes that we anticipate with a new age in healthcare, with a new term for our president, with new programs and initiatives–and I hope we can do more than talk about progress. We also face a time of cuts, further reductions in the spending on entitlements. We are getting older, dug into lifestyles that never envisioned a time that we would outgrow them. And in so many ways we have found comfort in the here and now, with utter disregard for the future, or for the here and now that we have so carefully hidden from everyday view.

I want to say that the level of caring is not good now, not fair–but changing. I want to feel that change, want to wake up and see a world where people are not driven to despair by the heartbreak of a nation that discards its sick and injured, and those who are neither sick nor injured, but simply different, who also are constantly fighting for a ramp, for a way in, for inclusion. It is hard to watch the bitter realities day after day, and not believe that our country can do better, can be better. I think of Martin Luther King today, as we all must, and find in his “I Have a Dream” speech these words:

“I have a dream that one day every valley shall be exalted, every hill and mountain shall be made low, the rough places will be made plain, and the crooked places will be made straight…”

We could, you know. But until then, I refuse to pretend that things are better than they are. I hope; I dream, but the buck stops here.

Written by Only Anecdotal

21 Jan 2013 at 9:30pm

Simplicity

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Today I sat next to a sick man. He told me about the tomatoes he grew this summer. Tomatoes so big and sweet, juice dripping down… he had devised a cage to keep the squirrels away, and it worked. His partner chatted with a nurse about working, as a girl, on a farm, the meticulous methods that the older girls used because they were paid by the quantity of work they produced.. the fun, the hard, hard work. They both spoke of their home, the expense of having someone help him there, still cheaper by far than the nursing home, but not so insurable.

Most people do not ask me to help them find the best or the fanciest things. They want the simple things, really, the things that easily fold into their life as they have come to enjoy it. Staying up late, morning crossword puzzle, and coffee. The TV turned on just for the noise, or not. The birds outside the window, feeder filled. An open window. Grass. Beloved pets at our feet, on the bed, spoiled rotten.

A long time ago, I had been talking to a woman at her home, and called to check in. Her husband told me that she had been in the hospital, and was now at a nursing home nearby for short-term rehabilitation.

I went to see her. On the bed of the room she was staying in, I saw only a suitcase and a cane, but not the woman. I looked, but the room was dark, too. Walking back to the nurse’s station, I saw her small figure walking slowly down the hall. She grabbed my arm, and walked with me to the room, and shut the door.

“Julie,” she said, “I just went upstairs! I just told the nurses that I am going home!”

She had just been exploring, as she was keen to do, and had found the long-term portion of the facility–and talked to people who said they had been there for more than a year. She said she did not want to become one of them.

A few weeks later, I called her again. She told me that she had had a wonderful Sunday recently, cooking and laughing with her husband. She said that in all, she spent many days in bed, sometimes had a hard time. She had help, just about enough of it.

And for those Sundays, the scent of her native dishes, the sun streaming into the windows, plates on a table, being home mattered more than anything. Simple pleasures.

Written by Only Anecdotal

14 Jan 2013 at 10:21pm

Posted in advocacy, consumers

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Wishin’ and Hopin’

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and thinking and praying…

Though it’s early in the year, we seem off to a tough start. The obituaries (yes, I read them) are a mile long, daily, and the hospitals have been swamped. The calls are more urgent, despite the increased awareness I have noticed about programs that used to be “the great secret” or otherwise underutilized.

The damning thing about knowing all the options is that it makes the situations with no options all the more visible. It gets harder and harder to be the bearer of bad news, but it is so often the situation we face now. I mentioned a few of these groups in my last post, but they keep returning, constantly, similar situations, different stories. It seems obvious that change is needed, but it cannot come fast enough.

It seems so obvious that we need houses we can access, neighborhoods, transportation, and help. And yet, as we see solutions so easily adaptable at times, it seems far from everyday thinking. Stairs? No problem. More highways instead of public transportation? No problem. It seems as obvious as global warming–we are burning, like Rome. Yeah, I know. It sounds like fool talk.

Perhaps it is the thought of winter, here with us for a few more month, but I do not want to wait, to watch more people in despair. I want to skip to the part where we feel productive, where the change seems to be around us, people talking. The number of people who are truly in trouble, suffering, seems to be growing. The danger is that we are not prepared. The advantage is that it will be impossible as the numbers grow for this problem to remain invisible, ignored.

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7 Jan 2013 at 8:24pm

Posted in advocacy, community, disability

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