Only Anecdotal

No numbers, just stories

Archive for September 2012

What Do I Do With This?

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A woman I saw last week was trying to figure out a number of important issues, including how to pay for dental work, and what to do about the ambulance bill that evidently was going to collections.

But in the midst of all this was the impending technology that had been given to her, technology that was supposed to make her life better.

Now, she was not in disagreement that it might be nice to use the cell phone. But after a year, it remained in the box, attempts at having put the thing together evident. A neighbor had charged it, but I found the back still in packaging. The woman’s problem, she told me, was how to turn it on.

“And the company keeps calling my home phone, telling me they do not want to lose me as a customer! But no one can show me how to use it.”

The phone was very similar to mine, and I found the power button. A message appeared saying that her minutes had expired, gave a number to call–not the same phone number on the packaging. But by the time I could get a pen, the number had disappeared.

“This is just harassment, don’t you think?” the woman put her head in her hands and put the phone and its cords back into the box. “Maybe later, but right now I just cannot deal with all this.”

A few weeks earlier, she told me, a visiting nurse had appeared at the door with a large piece of equipment to measure her vital signs. They tried to put it into her dining room, which has only one electrical outlet, already filled.

“They wanted me to unplug everything, and this is my dining room! I am sure it is much easier for them this way,” she told me, “but I asked them to take it away.”

Two good ideas, that would undoubtedly have been helpful to this woman, remain unused, unuseful, and furthermore, a source of enormous irritation to a person recovering from a serious illness.

I guess we could make arguments about the need for people, even older people, to adapt to a changing world. But it may always be a fact of life that not everyone will be able to do catch up with the technological advances that seem to come faster and faster as time goes by. I have spoken about the importance of personal contact, the fact that technology cannot replace humanity, and what we experience when we sit down and talk to a person, especially in the home.

But humanity tied to a piece of equipment can go a long way. The woman I visited would have been thrilled with the equipment she had received, if only a caring, thoughtful person had showed her how to use it, or made it easy for her to fit it into her home. It is so easy to assume that everyone can figure out how to use a cell phone, and that it makes sense to put equipment close to the place a person most often sits. But assumptions are often wrong. It is not an issue of noncompliance, or even stubbornness, for a person–any person–to ask for explanations and for accommodations. In fact, this is the greatest demonstration of will and self-determination. We can do much better to honor that.


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25 Sep 2012 at 6:58am

The Last Taboo

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Last night I had the great pleasure of seeing Alexander Freeman’s new film, The Last Taboo.  I am so glad to have found out about it just a few nights before the screening, so glad to find this vehicle for change.

There are two things that we Americans just cannot discuss: death and sex.

I spend a lot of time talking about death with people who have to. But it is so easy amid the housing and transportation concerns to dismiss the basic human need for–right to!–love. And touch. And pleasure.

I will be writing more on this in the future, and will soon share some projects in the works around this topic. In the meanwhile, check out Alex’s profile (featuring this film and previous work) here.

Written by Only Anecdotal

21 Sep 2012 at 7:34pm

Posted in advocacy, disability

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Aging and Disability

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Last week I had the opportunity to walk into the formal face of my double-faceted work existence as I attended both the Massachusetts Home Care Conference and the Massachusetts Statewide Independent Living Council (SILC) Conference. Back-to-back, I witnessed duals (not duels… although I wonder), and the very notion of what it means to be a service provider in this changing world.

A word from Christine Griffin perhaps brought it all back home to me. To paraphrase her lunchtime talk at the SILC conference, she discussed the notion of the newly aging–a great difference as I have seen between the newly sixty-year-old Vietnam-era consumer, and the ninety-five-year-old WWII veteran. Remember the clash of cultures back in the day? Depression-era stoic survivor not wanting help, versus Civil Rights-era champion demanding help–and equality, to boot? It is enormous, and Ms. Griffin’s statement about meals on wheels (“I am not going to accept the Salisbury Steak; I may just want to order a pizza!”) hits the nail on the head.

I find a lot of resistance to “help” from that Depression-era crowd. It seems to me that they are proud of their achievements, and do not cede their independence easily. But it is more than that.

I am forever frustrated–annoyed–by the idea that granting freedom to people by giving them the assistance they need to live life fully is an entitlement, and that some people are more entitled than others. For some strange reason, we feel that the compliant survivors of the first half of the nineteenth century somehow worked to earn services, and Medicare, and our help if they need it, whereas a younger person who has the misfortune of developing some life-altering illness or disability cannot easily receive the same level of support.

This is true in terms of the sheer availability of the most basic services, like homemaking, as well as at an administrative level where the power clearly lies more in aging community than in the younger disabled world.

I know this is always a controversial subject, but numbers tell a great story, and by numbers I mean distribution of money. We are supposed to collaborate in our aging and disability consortia, but too often I see a competition where there should never be one.

The services through the aging and disability consortia right now include the options counseling program–which was in its root a real collaboration between the two worlds–and the care transitions programs (STAAR, Coleman Coaching programs) meant to help prevent hospital readmissions of specific groups of people. It is absolutely astounding to me that in the second category, these programs seem to be popping up, presumably a product of aging and disability worlds, but they are the elder service agencies that own them. Was there ever any sort of collaboration? If so, when? Or has the disability world been present only in name but not in voice? How very sad.

At the Home Care Conference, I was delighted to meet up with a few of the Information and Referral staff from my Independent Living Center’s partners in the Aging world. When the ADRC project began over four years ago, our area included five of the Aging Service Access Points, and there were monthly meetings with I&R and options counseling staff. Over the three years that we met, I learned an enormous amount about how agencies that serve the same population with the same programs can differ so much. We learned how we are innovative in our own ways, perhaps the best ones for our specific communities; we learned to work together. And best of all, we all really liked one another. It was a key to our success, this sharing, and I miss it. I think that if we are ever to rediscover that spirit of collaboration, it will require more efforts like this, coffee, stories, community. Formerly quarterly reports and meetings are simply not enough. We need to meet monthly, informally perhaps, in smaller groups–often enough that we feel close, and not limited to the pressing demands as we are turning to one another for advice and support.

It is obvious why disabilities of all sorts and the aging community would want to come together: politically, we are much stronger as one unified voice than we are as separate voices asking for the same thing. Divided, we are easily conquered as well.

So, we need to step back, and listen. We need to tear apart our misconceptions, our silos. Oh–I know how trite this sounds as we have all heard the silo speeches before. But in fact, even in the dearest community to me, I saw how separate we all are, the aging services, disability services, medical services, technical services. It absolutely astounds me to keep going to meetings and conferences and hear all the same stories told in different ways, with great ideas that somehow are not–still!–uniting. So much potential in all of it, especially now. And now is the time to come together and act.

Written by Only Anecdotal

17 Sep 2012 at 7:37pm

Aco Ico

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This week, there have been a number of discussions around the penalties hospitals are now receiving for readmitting patients with certain conditions, and Medicare, within thirty days.

As I have stated before, I think this is a misguided practice, throwing gasoline–rather than water–on a fire that is already blazing. But of course, if we ignore the source of the fire to begin with, it looks as though we are all doing something!

Enter the Integrated Care Organizations and Accountable Care Organizations. Note the word care in these titles, for the focus–at least to me–is on the concept of integrated care, and efforts to coordinate services for people with chronic health conditions. This is most likely the key to preventing those readmissions, but of course, coordination is only possible when there is something there to coordinate.

I will spare you readers the rant this week over the lack of long-term care services. I suppose I could go on forever about that, even as I know the lack (and efforts to fill it) are on the radar of many others, as well.

The past week in the trenches was particularly hard. I am still a bit shaken at week’s end at the tragedies that come to my door every single week. Most of my referrals come from the hospitals, where I do not know how employees in the emergency departments and social work areas do not become completely overwhelmed with the sheer injustice of it all–they see it, in all the gruesome detail, daily. And I have the choice to say no, to walk away from situations that I find dangerous or inappropriate, never make that ethical choice to let go of life or to save it. Nonetheless, I remain shocked when I let myself, that this “greatest healthcare system in the world” bankrupts its customers–or our conception of healthcare’s role within government does.

I suppose that makes my views fairly clear. But if not, there is still time for discussion. Tomorrow I will be at the Massachusetts Home Care conference, hearing about ICOs and where we all may be headed in our thoughts around long-term care.

And after that, the Statewide Independent Living Council conference… Much to learn, much to ponder. More next Monday.

Written by Only Anecdotal

10 Sep 2012 at 7:40pm


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I title this entry with the English translated name of Cortázar’s fantastic Rayuela, a labyrinthine, experimental journey that has got me thinking today about making an appointment for my annual physical.

Sad, yes, I know. But it is the utter futility of it, and not the pleasure in the endeavor that is reminiscent of the novel. For I know what will happen. I will make that call, admittedly quite a bit later than I should have, and I will be told that I must wait.

The last time I saw my doctor, she scolded me for missing last year, until I explained to her what it took for me to get the appointment in the first place. Truth is, in January 2011, I had hoped to get in soon, but was scheduled for June 2011. Then, an important meeting came up, and I had to cancel a week prior, and was told that the next available was at the end of January 2012. The staff were nice enough to put me on a wait list, and one morning in September 2011, I did receive a call saying that someone had cancelled for that same day. I had to work. So, January 2012 it was.

Now, I like my doctor, and in an urgent moment (like last summer’s particularly bad reaction to poison ivy), I am always able to get in on the same day, usually within a few hours. That is great. But it is truly frustrating to hear my doctor then sigh, and tell me that as things are right now, their office could not possibly handle consistent yearly checkups for every single patient in their practice.

I am super-healthy for the most part, lucky me. But nonetheless, following up on testing from this appointment, I ended up in a sort of biopsy hell, during which–at one point–someone casually mentioned that last year they used to just watch these things. It was nothing. It scared the living daylights out of me for a good four weeks, but it was nothing.

Another recommendation, I will be far more skeptical of the necessity. What an enormous waste. I received a letter from my doctor two weeks later. Benign. Gee, thanks. Fortunately, my frantic phone calls in to the clinic had already confirmed that diagnosis.

I mention all this because I am thinking right now of how little input I had in the process, how little was explained to me, and how fear of death instilled in me a certain compliance–I did what I was told.  I believed my doctor and the medical professionals she had sent me to see, and I went along with the whole thing. Since everything was fine, I have to wonder, too, how many people had to wait longer because I was there? How much did this drive up the cost of the procedure? How crucial was it, in fact, that the condition be caught so early in the game? Would it truly have made a difference?

I fortunately never paid a penny past the ten dollar co-pay for the original appointment to my doctor. I never even saw a bill. Really.

Really? I hate to think that it is cheaper to walk down the expected path, to comply, than it is to question a procedure, an expense, an unwarranted fear, a stupid blip on a screen.

And then, what if it had been something? Would I ever be limited financially in the choices I have by my willingness to go along with the protocol? If I fell ill, and short-term rehabilitation in a skilled nursing facility was recommended, would I really be a fool to insist on going home? If I knew my own bad reaction to a certain medication, would I be charged more for requesting another?

I am looking more this week into the whole notion of Shared Decision Making. It has been on my radar for some time, following various discussions about it. Why, oh why, does it seem so controversial? Why is the power in the medical establishment, and not in the hands of consumers themselves?

It is all quite upsetting to me to think that it is so difficult to talk to the doctors we choose, when we share such intimate and important aspects of our lives with them. But it is. We do not want to offend the gatekeepers to our well being, for one thing.  For another, well, sometimes we just do not know how.

Realizing the timelines of making appointments, I had intended to settle my appointment next year as I was leaving my January checkup. Unfortunately, I could not because the computer would not allow for an appointment more than six months in advance. That means, I should have made my appointment in June, or so…

So perhaps we do know how–but have gotten the clear message that we as consumers matter very little in the equation.  No wonder we fear not being heard.

Written by Only Anecdotal

3 Sep 2012 at 10:11pm