Only Anecdotal

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Posts Tagged ‘hope


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In the time since I last wrote here, the world has changed.

We have embarked on so many new adventures in the agency where I work, in the state, in the country… It is all a bit baffling to see the ideas so long expressed coming to fruition now. I find myself once in awhile holding onto my cynicism like an ugly old jacket that served its purpose well enough to protect me back in the day, even if it never quite fit. Same with our healthcare. Hard to believe we might be able to order something tailor-made, but right now I am in the ordering business!

Last week I went out to do my first long-term services and supports (LTSS) assessment for the One Care program–Massachusetts’ demonstration healthcare program for people ages 21 to 64 who are dually eligible for Medicare and MassHealth (Massachusetts’ Medicaid program). Since people in this age group only receive Medicare after they have been on SSDI (Social Security Disability Insurance) for two years*, we know that their disabilities are significant and long-term. MassHealth is triggered also by low income and/or disability. Some may buy into the MassHealth system, but most would only do so to maintain some sort of long-term benefit, such as personal care attendants. Either way, we know that dual-eligible individuals often struggle with day-to-day life. While it may be an illness or disability that has made daily activities difficult, it is also true that for many people, this lack of support in the day-to-day needs becomes a downward spiral into isolation and worse health.

The unmet need for long-term services is hellishly familiar to those of us who have worked or lived with disability for any length of time. I personally have clamored for years about what a great world it would be if we could embrace care coordination, medical home, consumer control, participatory healthcare, collaborative decision-making… I have had my mantras, my rants, my moments of frustration.

And now.. I have had the experience of sitting in a consumer’s living room, asking the individual what he needed in his daily life. He told me, told me what he does, what is hard, and I came up with a few creative suggestions for things that may make these things possible.. or easier. I have¬†absolutely no idea whether a healthcare plan is going to recognize the tremendous benefit of, say, a gym membership and transportation to get there. Or support for companion pets. Or even homecare–not so easy to get that sort of help before a certain age. But I am writing it down, recommending it strongly, and ready to explain why.

This first assessment was difficult for me, mainly because I am so much in the habit of thinking two steps ahead, to what is available instead of to what is really needed. I find myself frustrated at my own realization of how much I had adapted to this system of thinking–a system that I have complained about for so long. I have spent so many years hitting my head on the wall trying everything I can possibly think of to get someone desperately needed help (and much of this help being for my own children) that I find it incredibly hard to believe that there is a program where I can write down, “Julie X. needs Y, because it will help her health in ABC way…”, and Y will be granted (I believe the preferred term is authorized). I have joked for a long time that my requisition for a magic wand is on hold, but by golly, I am beginning to wonder if that purchase order did not just go through.

So, when I send in my most recent assessment, with a few very reasonable recommendations that may be completely life-altering for that individual, I am going to hold my breath, cross my fingers, and try very hard to believe that this is really true.

I once saw a woman who was facing enormous challenges in getting any sort of support approved. It was very difficult for her, she said, not to compare notes with her friend from home. Her friend had been misdiagnosed with cancer, she told me, and the healthcare system of her native country had sent her friend for a week to a spa for emotional recovery. When her friend arrived on the train, an attendant was waiting to help with her wheelchair and luggage, and a ride to the spa.

The woman I was visiting looked around her now-cluttered dining room at her own unassembled monitors, and her calendar, and her list of appointments and medications she could barely remember, much less afford.

“This is barbaric,” she told me. It was hard to argue with her. She was sick, and tired, and had trusted enough to go through with preventive surgery that made her feel much worse than she had felt before–and this was months after she was told she should have recovered. She was at a loss to figure out how she could care for herself and her home now. Before her surgery, she had still been mowing her own lawn.

Imagine that this were different. Imagine that she had understood the affect that the surgery might have had on her life afterward. Imagine that she had still had the surgery, and that her doctors had planned for the hands-on support at home that she really needed to make a good recovery. Imagine that our biggest challenge in meeting need were simply a matter of figuring out how to schedule it all appropriately, and not whether it is even possible.

Imagine this demonstration works, and spreads to all of us in our new healthcare system.

I am ready to start imagining. Are you?

Written by Only Anecdotal

28 Jan 2014 at 1:39pm

The Buck Stops Here

with 2 comments

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