Only Anecdotal

No numbers, just stories

Archive for November 2012

About Never Giving Up…

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Never give up.

They are words I have lived by for such a long time, but once in a while I have to stop myself and think about what exactly they mean.

I thought of this just yesterday as a woman described to me the long  journey she has endured through a medical procedure that was supposed to be life-altering–and was. The problem is that it was supposed to make her feel better, but instead has left her with a series of side-effects and subsequent infections, illnesses, and depression. A doctor recently told her that he was troubled by the advice she had received. Yes, he would have recommended the surgery, but he would have also told her about the risks. At her advanced age, she may well have decided to maintain her active lifestyle instead, even if it had meant that her life might end quickly and soon. Now, she spends days on the telephone trying to figure out how to cope with her new-found dependence on other people–not something she laments in itself, but an enormous disappointment when she felt that her doctors were promising a longer, healthier life. She told me she felt bullied into treatment.

I returned to work after a week’s vacation–the first long break I had had in several years. Moments of laughter and bliss reminded me of the things that are so vital to life, the things that make our fight for independence and equality all the more poignant.

My work as it is right now is meant to be a series of short-term relationships with people who need a hand in an urgent moment. An accident, an illness, a sudden realization that what had worked before no longer works.  If I can save people  time and aggravation by connecting them with resources that will not give them another list of places to call, it can be great. No wrong door, we say. And some of us fully believe in the power of that community.

But more often than not, the need comes not from the disability itself, but rather from the maneuvering necessary to gain permission from an insurance company, a human service agency, the government, or a doctor. What matters most, not within the context of a medical system, or a payment structure, or a menu of best practices–but within the context of our own lives?

It troubles me when I meet people who have undergone procedures that may well fall into the standard treatment regime for a given illness, or who have gone through the appropriate channels for.. say, mental health services… all with absolutely no long-term benefit to the person who was trying to remain or become more healthy. In too many situations, I wonder at the very motives behind a surgery or even a prescription, when the consumers themselves are  kept ignorant of the whole picture, or ignored if they ask questions.

I do not think it is a situation of giving up when a person decides not to treat a condition, not to undergo the biopsy, not to have the surgery when the treatment itself may well be more traumatic than the condition it is intended to relieve. But too often, I see too many people who realize this only after the fact. “If I had only known…” they tell me, as they then try to maneuver a set of stairs, to obtain life-sustaining durable medical equipment, to see a therapist at a frequency that actually is therapeutic… Permission for the stuff of life, the adaptations that make it possible to live real lives with our various states of humanity–it is not a matter of compliance with a treatment plan, or cooperation with a human service system, or affordability within a payment model.

Never give up, I say, on the vision that the world can be bigger, more flexible, more inclusive.


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27 Nov 2012 at 7:15am

More Thoughts on Thanksgiving

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Tonight I am laying out a tablecloth. Pies are made, cranberries, too. My kids are busy, thinking of bonfires.

I am listening to songs upstairs, various songs, Edith Piaf, Aretha singing “Laughing on the Outside,” an assortment of lonely and lovelorn songs . I went to my garage to take out the various things that need to hide tomorrow, looking for the turkey platter. I am thankful.

Across the street I can see the lights of the hospital, the hospital where I spend so much time. I have seen more tears there than I like to think about, and tonight I think of the people there, and the people in homes alone with little more than Meals On Wheels to look forward to tomorrow. I know that for so many of the people I see in my work, these weeks are hard reminders of what could be, of last times, of uncertainty. Life gives us all this. Grace to all of us, remembering all of us, always.

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21 Nov 2012 at 7:46pm

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I have taken off the entire week for Thanksgiving, partly to prepare for the turkey, and partly to get some sort of a break before the commotion around Dual-Eligibility starts in earnest.

I am stunned in many ways at the number of referrals that sail into my office now. When we first started the project four years ago, we expected to be inundated with calls from social workers and others who were trying to help people remain or reintegrate back into the community. Imagine… a free service that gives that connection…

But we all know the story: new project, something else to remember, a hassle. Or, if it works, another trusted part of the community, a stepping stone, a colleague. I guess I have gotten there. Many of the people I see know someone else who regularly makes referrals to me. We have a wonderful community now, most of the time.

Still standing in the way are the agencies and entities with their own interests preceding those of the consumers they serve. Growth can destroy an agency if it happens so quickly that the agency loses sight of its core values, or if those core values are skewed to begin with.

Last week was filled with the sort of heartbreak that comes from a completely messed-up system. I am already frustrated enough with the incredibly restrictive nature of Medicaid waivers. As I have stated in the past, why a waiver? Why is the system still filled with such institutional bias?

And why, when a person has a brain injury or a life-ending illness, or a significant physical disability, why oh why do we attach those waivers only to getting out of a nursing home?

To explain, we have some waivers in Massachusetts that pertain only to people who have “served time” in an institution for ninety days. If you have an acquired brain injury, for example, there is hope if you have been incarcerated in a nursing home. Money Follows the Person, a demonstration project for Medicaid recipients, also is based on that same nursing home stay.

So, Olmsteadians and others, where are the Home and Community Based Services to prevent these nursing home stays in the first place?

I need these resources, RIGHT NOW, for the people I see. They keep asking, you know.

I don’t like to tell people that the options are to become impoverished, to divorce the people you love, to play the system and make it work… It just seems immoral. It is.

I am so thankful, thankful for the mere thought that our country has ventured into territory that even questions the barbaric healthcare system that we have. We seem to ignore that people actually do age, get sick, need help, remain human.

I am thankful for my own health as I write this, as transient and wonderful as these moments are.

I am thankful for the freedom to fight for what I believe in, and I believe that healthcare is a human right.

I am also thankful for movies like the one I saw this weekend: The Sessions. Thankful for humanity, love, emotional, for the physical body and its existence on earth. Thankful for creativity, and humor, and once more, thankful for love.

Written by Only Anecdotal

19 Nov 2012 at 7:30pm

He Wants the Real American

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The election is, at last, over.

I am relatively happy with the way things turned, out. Relieved may be a better word. But not everyone feels this way, a fact that came crashing down on my idealistic soul in a bar on election night.

Now, you would think that event planners would have better sense than to schedule a singles mixer as we awaited the turnout from such hotly contested races. But schedule they did, and I signed up. I thought it would be interesting–and it was.

For one thing, it was an icebreaker for the nervous mingler to look up at the screens and comment as states turned either red or blue. That was a somewhat entertaining, but as a person with strong feelings about the issues brought up in the campaigns, I could not help but voice my overwhelming concern during the last year (several years, actually) about access to healthcare.

A man tried to convince me that he was justified in his stance against universal coverage, because his company is looking at penalties of over $5 million because the company does not offer health insurance to all of its employees. I was shocked: shocked that rather than offer insurance, the company had decided to swallow the penalties. Shocked also at his reasoning. He told me that the people have jobs, and fewer people would be employed if the penalties ate that deeply into the profit margin.

Problem is, I see people die from lack of access to timely and affordable healthcare. I see the stress and the ultimate, unwilling non-compliance to medical plans because people cannot afford medications or outpatient visits. The man claimed, as Romney did, that people go to emergency departments for care; they do not go without. I told him that if he could walk one day in my shoes, see the people I see, he would change his mind.

He was pale when I told him good evening, and I was not sure in the end if he was just angry, or if he really considered what I had said.

I walked to the far end of the bar, where a man, and another man who turned out to be the cousin, introduced themselves. The first man had not voted. The second had, but up to that moment had refused to share with his family which way he had voted.

What he said upset me more than any other thing I have heard this entire election cycle. It upset me, perhaps, because it was real. It was tangible. And they were his deepest feelings, he said.

“I voted for the real American,” he said.

I am terrible at disguising my feelings. And true to this, the first man looked at me, and said only, “Uh oh.”

Truth is, I was sure I had misheard the cousin. I was sure that I had misunderstood. I was sure that in downtown Boston, in 2012, I could not be hearing the racism I had heard from a few people when I was a kid in Missouri. I was sure that despite the hate and fear that comes into our homes via Fox News and much of talk radio, no one could utter such a sentiment to a stranger, in a social setting.

But deep down, as we have been seeing with sentiments against women’s rights, I know that hatred has a voice, and therefore, a space. Power.

It shook me, glad as I was the next morning to find a new senator in Elizabeth Warren, and the same president with Barack Obama. The people spoke, and most of them do want a real American–one of the real Americans… the one who best represents the nation that we are right now.

No luck for me in the singles mixer. I had planned to stay for only an hour, and I did. I went home to spend the remaining hours with my kids, albeit it with a new realization of the sincere need we have in our land to unite, to reach across, to love.

And in this, I also want to thank the veterans who have served our country. I meet many of them, many who are getting older now, many who have stories they never told, others who have stories they never stopped telling.

In an ideal world, I wish we could all serve, if not in the military, in a volunteer capacity, serving the needs of our people throughout the country, uniting us all in earnest, as we see, up close, who we all really are.

Written by Only Anecdotal

12 Nov 2012 at 2:48am

Posted in advocacy, community

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Pouring Down Like Silver

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The weeks lately seem to come in like the hurricane last week. Round here, wind and relatively minor destruction, some fear. Other places, much worse. And so it seems as news comes in and will continue to rush in tomorrow and possibly beyond. As understood in that infamous Chinese curse, we are living in interesting times. This was the week to think about a new database, my present work, and a new project headed our way. We survived the storm, and carried on.

So, once we were back to work and on the road again, I found myself on the one hand trying to catch up with the enormous number of referrals I have had lately. I am glad that the community seems so cohesive. Often, depending on the situation, I find myself surrounded by many colleagues in similar care coordination/coalition building/resource finding roles. I am glad that we know to call one another and work together when people call upon us for support.

And on the other hand, I find myself drawn into a brave new world of healthcare at this point, as I contemplate–deeply–the about-to-launch demonstration project known familiarly as “The Duals”.

Individuals who are dually-eligible for Medicare and Medicaid represent a vulnerable disabled population. The sorts of ping-pong games between the two insurers have delayed medical care, therapies, services, and equipment for most people at some point, often with aggravating, if not tragic results. Change is needed.

At the same time, change is frightening, especially when it feels that there may be a buck to be made… or saved. And given the sorts of systemic abuse that many people, notably those with psychiatric disabilities, have faced throughout history and throughout individual lives, it is no surprise that invitation to “new and improved” packages is met with cynicism, as well.

I am newly diving into this world, swimming deeper into the history and ideas the Dual Demonstration Project contains. The insurers–Integrated Care Organizations–have just been named on Friday. And from my early glances, I can see that it is an opportunity to explain to come to the healthcare world and tell the stories of what it is to have a disability in this world. The Duals are the pioneers, not only for this project, but for the entire Affordable Care Act, as it looks to this challenging coordinating effort.

And tomorrow… Vote! The ballot in Massachusetts, particularly, has perhaps never mattered more.


Written by Only Anecdotal

5 Nov 2012 at 10:33pm