Only Anecdotal

No numbers, just stories

Archive for the ‘participatory healthcare’ Category


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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?


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28 Jan 2014 at 1:39pm


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This week I have been thinking a great deal about the process of many things in life, things that are in theory quite simple, but are forever made difficult by what we have to do to follow through. I wonder how much time goes into this, how the process ends up being what it is.

Let’s start with Target.

More specifically, I point to the Target dressing room–at least the one in Framingham. My daughters were trying on shorts, and though we have tried on clothing there before, the girls forgot and headed back to a room without stopping.

“Wait!” called the attendant, who was rummaging through heaps of clothing near the entrance to the fitting rooms. “You need to take a number!”

The girls went back, and the attendant counted through the pairs they had chosen, handed them a number.. just like at Marshall’s, only not obvious at all.

I waited while the girls were in the fitting rooms, and watched as countless other people pushed carts through the narrow space that linked two departments to the dressing rooms. Every single person who went in was confused. For some, it was the most obvious place to go from one part of the store to the next. Others wanted to try something on. But what is the process? As the rooms became crowded, the attendant became more and more agitated, shouting, chasing down customers to make them get a number.

I felt sorry for the attendant. It seemed so obvious that the process was making her life miserable, making things hard for customers, and so easy to solve. All that the store needed to do was to put up a sign, indicating that customers should check in first. In other stores, the dressing rooms are set up so that it is impossible to go to the changing area without being stopped first. In some places, no one stops customers from trying on clothing in a private stall. In some places, an attendant has to unlock the doors. But when no one knows what to do, tempers can flare.

So, this is Target’s clothing department, which–we hope–is a relatively non-urgent area. But consider the medical world, where no matter the level of urgency, the level of stress is significantly higher than any retail experience.  Or my service-oriented world, where people look to us to help them figure out how to find long-term supports. These are significantly more life-altering experiences than any clothing purchase. But the process to getting help is even more confusing. If it weren’t, quite honestly, I would not have a job (or at least, not this job).

The thing we have to remember in our own individual worlds is that we are here everyday, and have come to a certain comfort level with the way things are.

So, we forget to step back and remember how bewildering it has been to us to enter a new and strange place, like an emergency room–in an emergency. Or even how it feels to go apply for food stamps, when we need them badly but feel ashamed to ask.

I have a son with autism, and was always intrigued by the oft-used strategy of “social stories”–scenarios that explain step-by-step what to expect in certain situations. I have thought of this often, not only for people with autism, but for all of us. How much clearer life is when we can step back and focus not on whether we are adapting properly to the culture of a situation, as much as successfully accomplishing what we set out to do. At times this is critical, life-saving.

But more than expecting people to adapt to us, I am thinking lately more about what we can do as service providers to simplify what we do, to make our work more transparent–and in fact, more simple for ourselves, as well.

Not rigid–not incapable of tweeking or allowing for the unexpected. In fact, easier to tweek, more resilient.

It starts the moment we walk in a door, or place a phone call, look at a website… How does it look? How does it feel? How does that feeling affect our interactions with the individual? Are we attracting only certain types of people because of the environment we create? Do our unseen barriers shut out others?

Change both in healthcare and in services is on the way, whether we like it or not. Might as well embrace it, I say.. And I mean this. This is the opportunity we have to let consumers guide our thinking on what we as professionals do. Are we doing all we can to begin from a place of excellence? As I see it, the work we do can only improve, the trust we inspire can only be stronger, if we make our process clear from the start.

So.. I have arrived at the emergency room. How am I triaged? Who has priority? What can I expect?

A navigator stationed in the waiting room could make an enormous difference. Snacks for tired children. Free coffee. Obvious signs for the bathroom. Estimated wait times. But above the fluff, and most important: tell me what to do, and whom to tell, if my situation changes while I am here. Is there a sign explaining this? Can I understand it?

And when you move me back to a room, do not just leave me there to guess, and worry. The process of the emergency room is sometimes as bad–maybe worse–than the injury that prompted the visit.

A service agency can clearly display its signs from the street. A waiting area can be friendly, welcoming, non-threatening, but professional and serious. Does your name tell me who you are? Give me informative literature. What is the mission? How does a person get help? Is it okay that I just walked in? Explain the process. Is it still confusing? Can someone talk to me now? Maybe the process needs a change.

Just as great design can improve our experience of a beautiful home, design of our process can improve the good work we do. Let’s step back from our busy day-to-day, and just consider this, walk in our doors and think of how it all feels to the people who seek our services. It matters.

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12 Aug 2013 at 10:52pm


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As I was driving to a meeting last week for the Dual-Eligible Demonstration Project, a man stood out near the stoplight. He was holding a sign, “I do not drink. I had a stroke and am homeless.” I nearly picked him up and took him to the meeting.

His story–the story reported on his sign–is far from unusual in my world. But it is unusual enough that the experts who treat strokes as an acute medical event still fail to understand the repercussions of health conditions on everything else in life–and likewise fail to understand the effects of everything else in life upon health conditions.

I am not talking about behaviors that are within an individual’s control; I am referring more to the chronic situations that come about first because of that acute medical event, and the difficulty not so much with the illness or accident itself as with the struggles in day-to-day life afterward.

The vision of projects that attempt to coordinate care for dual-eligible Medicare and Medicaid recipients makes a lot of sense, and could allow for the flexibility that can make an enormous in the quality of life of those individuals, and hence, in health outcomes.

But flexibility comes only when there is an understanding of the full picture of a person within the context of life, rather than within the context of a healthcare setting. This is where expertise of assessment comes into play, and where I fear that we are in real danger of getting tripped up by that very definition of expertise.

What is an expert? I see the established healthcare’s system respect for degrees and licenses, and see a structure that is resistant to accepting the expertise of the individual receiving treatment–except, sometimes, within the context of that treatment and the immediate needs around it.

It is not enough to share decision making, or to create a participatory system. More than that, the entire system needs to be flipped where the expertise of lived experience is valued as much as the expertise in the medical field. That clinical expertise is essential, of course. But it does not outweigh the practical aspects of life and the necessity of understanding how life changes all around when an individual’s health changes–and what can be done in all respects to improve the situation. We joke about a school of hard knocks, but the degrees we receive from life are just as valuable as those that we receive from studies within a well-established hierarchical system.

Part of the difficulty comes, too, from the harm that has come from years of medical arrogance. There have always been caring, wonderful medical professionals, and there always will be. In spite of any individuals, though, the power dynamic has allowed an enormous abuse, particular of people with disabilities, whose medical status amounts on a systemic basis to a problem either to cure or to ignore. The harm of this attitude is that mistrust of that system leads to mistrust of individuals–particularly in times of change where the powerful name the game–and where that power base remains so heavily weighted within the existing paradigm. More mistrust leads to defensive tactics, and to cynicism instead of listening, understanding, and working together.

Can the paradigm really shift in favor of the consumer in this new age of healthcare? I don’t know. I see vastly different attitudes about health and medicine in general in many other countries, where a broader range of health seems to be covered. But culturally those attitudes are so enormously different from the way we approach life here in the United States.. and we may not want to pay the taxes necessary to support such systems, even if we could accept that level of overt governmental control over our healthcare. But more flexibility? is it possible? Can we shift our system of medical care to one of health care, of care for people, that works, that truly supports the value of life, as is lived, itself? Time will tell.

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25 Feb 2013 at 10:12pm

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.

Written by Only Anecdotal

27 Nov 2012 at 7:15am


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The last week in the consumer trenches has felt like an exercise in unknotting strands of random advice, help, and procedures, trying to figure out just what has happened, and what is going on now.

A disabled woman is left stranded as her doting husband reverses roles from caregiver to care-receiver. The woman is alone, though not completely helpless, but she misses him so much–and vice versa–that life stops for each one of them when they are apart. In her house, I can only imagine all that he has actually been doing for such a long time, but finding trustworthy help in the home has been a more stressful process than going without it.

Another woman is telling me bits and pieces of difficulty not related to the major surgery that has made the bits and pieces now incredibly relevant. As I listen to her, and she tells her story again, I begin to wonder why this surgery happened in the first place–it was preventative, and not expected to significantly lengthen or improve her life. Or if she really did need some sort of intervention, why this particular procedure? She tells me that a year ago she was mowing her own lawn, and now says that she would never have gone to the hospital that fateful day if she had known. She was told at the time that there was no choice, and no time to wait. But there always is a choice; an informed one would have been fair to her.

Another person is trying to negotiate a balance between mental health systems and substance abuse systems, with very little success. One disregards the other–a familiar story. Insurance is denied for the things that might help the most, and I am left wondering how on earth a fairly young person–post-IDEA–could have made it through the school system without anyone doing something. And yet, he was passing his classes; he was not violently disruptive. It happens all the time.

In all of these situations, the people involved–consumer, client, patient–were all very well aware of how they felt, and what they believed they needed and wanted. In none of these situations were they able to get it, and to be honest, none was doing very well.

Many people have told me that getting older is difficult because so many people you love die, because your body refuses at times to cooperate, because the rest of the world stops listening. I am fairly sure this is all true, but I think it is true of many people who find themselves in the vulnerable situation of illness, disability, or actually, any sort of vulnerability. We will all find ourselves in these situations at some point of our lives.

I have found myself more and more frustrated at the level of advocacy we expect people to exercise when they are in these vulnerable situations–an entire education on Healthcare 101, or Social Services 101… no, make that 501. It is not enough to understand the mere basics. But for what? I find people everyday who have services, but no sense of why they come or who sends them–and the worst situation: what happened, when things fall apart. I have spent hours during the last week on the phone with various pieces of puzzles in people’s lives–trying to get some sort of response, but often to no avail. It is not even enough to be vigilant, sometimes. But without that vigilance, most people end up in far worse predicaments. What a shame that we cannot be clear and try to do our best to make sure people are heard and get what they need, what they are paying for.

In the end, assumptions and best practices may result in confusion, accidents, overdoses, high anxiety, death. Tragedy, preventable if for want of better customer service, and more honest, unbiased, balanced communication.



Written by Only Anecdotal

1 Oct 2012 at 9:46pm

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.

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17 Sep 2012 at 7:37pm


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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.

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3 Sep 2012 at 10:11pm

Evidence-Based Practices and the Full Moon

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5pm came none too soon today, phones ringing, and the strangest and most difficult situations making me wonder what on earth had happened over the weekend.

And then, we all remembered the full moon.

Oh, I have used the full moon as a catch-all explanation before, along with other convenient superstitions. But in truth, it is just another way of expressing that I often feel a need for making sense out of nonsensical situations, and often want some control when in fact I have very little–or absolutely none.

I include the idea of “evidence-based practices” in this conversation tonight, not in the medical sense, but because I often consider the meaning of this concept in my own work, as I try to justify it. Sure, I do keep data for my day job, despite what I talk about here, and am surprised more at the sheer quantity of people served than in any trends I see in those particular numbers. Maybe the numbers I pull are not the right ones. But then, what should I be measuring?

So, I think through the various stories I hear–my evidence, only anecdotal, as I have said–and try to look for patterns. Why so many people from one particular town? I assume a common referral source, but then realize that they are coming from everywhere, from doctor’s offices to hospitals to the neighbor from two towns over. Why so many with the same disability? or the same age? and why all at once?

I try to think of marketing efforts, or people in the community who have talked to me recently, or anything that makes sense of it all.. and rarely can I figure out any sort of reasons. Maybe it’s in the water. Or maybe there really are a lot of people who are turning eighty years old at the same time in a particular town, a town that lacks resources for transportation, perhaps, and a town where reassessed properties have caused taxes to rise dramatically on houses that these octogenarians paid off years ago…

But we have not measured these sorts of things–not effectively–and we certainly have not added transportation resources or other services that may give any sort of opportunity to test what sort of difference they might make.

And this leads me back to thoughts about the full moon, and that natural event that somehow may predict things. The moon, the stars, the transit of Venus… Do they predict anything?

In many ways, I like to deal with uncertainty, to figure out how to cope in spite of it–because in the end, life itself is uncertain. Beyond that, also, sometimes all the causal relationships we try to create may in the end make no difference if the people involved do not believe in them. And they believe in them, because they feel the difference from a qualitative perspective, not because we assign a quantitative value to that difference.

I want to figure out evidence-based practices for people’s lives–but I am not sure that any of us is ever so great at determining what will work best in a situation that is not our own. We can insist that someone will do better in a situation, but in fact, we may be better at predicting the emergency department visits spiking at the full moon.

Perhaps the thing we should measure is whether people, given enough resources, really do figure out their own best practices for themselves, and in what manner they want to use our expert advice.

But for now, it is easy to be superstitious when we have so few other choices. And maybe, just maybe, good things will happen, if I just keep my fingers crossed.

Oh, and get ready: there is another full moon later this August! Only in a blue moon…


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Later this week, I have to go to a meeting to discuss a training module created on the topic of “consumer control”. Now, for those of us in the disability world, these words have powerful meaning: a tenet of independent living, of disability rights, of civil rights across the board, when you get right down to it. And yet, I am anticipating more attempts once more to water down the rhetoric, to emphasize the progress that has been made in “person-centered” service delivery, in “consumer-directed” service delivery, in shared decision making. And while these attempts to include the consumer/patient/client in the discussion about care and services are better than total exclusion of the person, they are still missing the point.

In my work, the number one complaint I hear from people when they refuse services that are available to them is that the services were somehow intrusive, inappropriate or judgmental. I hear that they are not what the person wanted or perhaps even needed, but that someone–a professional of some sort–convinced a person to accept help, or care–or it was just done for (to) them.

One person determining “what is best” for another person is not an exercise of equality in the least. In fact, as the person–or family in the case of a child–is seen as the receiver of something, rather than as the subject of a service-related relationship, the relationship is skewed from the start. Is it any wonder that people do not follow service plans when they are not the ones who are in charge of them?

Loss of control is perhaps the most frightening part about the aging process, and also within the world of illness and disability, if for different reasons. We seem to have a desire as a society to protect those who do not fit the stereotype of what we deem fit and strong. A number alone–a number of years–can determine whether a person is clumsy, or a fall risk. It can determine whether someone is categorically entitled to certain services, like meals on wheels. It seems to invite sudden permission to resort to diminutives when addressing a person whose name we do not know. And for people with disabilities, if the notion does not invite pity, it may well invite fear, as we avoid the issue of difference entirely simply by not considering access of all sorts, by not even entertaining the possibility of a wheelchair, or a seizure, or an inability to speak.

But we as professionals may well envision our perfect worlds for people. We may know the most effective treatments, and the best living conditions for a certain set of circumstances. And actually, we may have some great ideas based on the experience we have and the things we have seen. But always, always, our consumers are the best teachers we have. It is necessary not only to listen, but to relinquish the reins to them. We work not with the people we serve, but for them. Really. It matters that much. The medical care we give, the services we set up, everything we do should start and end with the same sort of relationship I would expect if I walked into an Apple store, and told the worker what I need my I-Pad to do for me. And we should deliver–and if we cannot, we should go back and figure out how to respond to the need we were unable to fulfill.

I talk to a lot of people who are very good at creating their own solutions that really do meet their needs. A man I met a few weeks ago was in a quandary when he needed a doctor’s signature to complete a transportation form. He had stopped seeing the doctor, because he had pooh-poohed the man’s choice of a treatment that was not what the doctor had recommended–even though that treatment had been effective in the end. A woman sat in a nursing home for months, complaining endlessly to whomever would listen, that she did not want to be there, that she wanted to go home. And yet, over and over she had been told that she was too weak, that she could not manage on her own, that she was not safe. This sort of prison must be the ultimate loss of control in our society. (Now she is home, safe.)

I had a dream not so long ago that prescriptions for medicationss were a thing of the past. All medicines were legal, and available, and we just took them if we thought we needed them, consulted with professionals if we thought we needed to. I know it sounds medieval, and reckless to some, but I wonder as the world becomes wilder, as we self-publish and grow, if we cannot reinvent the sort of control we have as individuals to determine our own needs, if we cannot let go of our own (perhaps unconscious) desire to “help” others (which is another word for controlling them), if we cannot see fit to trust–truly–in the ability of those whose abilities are different from our own to make decisions about their own lives.


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I was talking last week to a group of intensive case managers in a big primary care practice that is moving to a medical home model.

Now, I like my work a lot, especially when things click, and it really is a matter of helping people navigate the system. I like it even better when I get to tell the changemakers–legislators, heads of healthcare systems, etc.–what people really want and need.

The problem is, people often do not know what they want, much less need. And this creates a situation where other people, or whole systems, try to dictate this to them. Or more exactly, try to dictate how people should live their lives in order to be healthy, and therefore happy.

Health and happiness, though, are qualitative terms that are not easily measured by what may be deemed as wellness in many respects. If a person feels fine, that perception is unlikely to change unless something changes rather dramatically in qualitative measures: it hurts, or it keeps me from being able to do something.

And even then, it seems to me that the change has to be rather sudden. Loss of ability over time allows for adaptation. And in general, this is good.

But in comes the healthcare system, with its idea that it has to fix things.

Or so I hear. There is a rather amazing power dynamic between many a sick patient and a doctor. The one that is perhaps skeptical about all the prescription bottles sitting on his kitchen counter (how much they cost, and how they are making him feel) and the doctor who sees a treatment as the thing that will significantly improve that patient’s quality of life.

So, I spend a lot of time working on issues around quality of life–housing, for example. Or transportation–not just to medical appointments, but to go out to the store, or to the hairdresser (amazing how often this concern comes up). And I also spend a lot of time telling people what their rights are, what choices they have whether in the hospital or in trying to make home modifications. And the person who will use the resources is always the person who drives the bus, in my book.

The case managers I saw last week all were happy about this, and agreed.

So, I am always eager to hear about the professionals I work beside, too. What is frustrating to them? What would make their jobs easier?

I asked the case managers what their biggest challenge was.

Their answer?


It was universal, and it stunned me. I was thinking about that as I visited people in the next week, people in varied and often drastic situations. I was thinking about concerns around hospital readmissions and chronic conditions that often lead to more disease, or worse. And I was thinking about this whole idea of compliance, and what it really means.

I think it is a matter of control. Some people may know full well that they feel better if they stick to a regime of one sort or another, and still choose not to do it. But there may be a lot of other issues that lead to what appears to be lack of compliance.