Archive for the ‘consumers’ Category
What Do I Do With This?
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.
Aging and Disability
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.
Aco Ico
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.
Hopscotch
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.
Up All Night
As summer winds down now, I admit to having fallen into the habit of staying up late, and waking up late, as well. Vacation for some, luxury of the absence of alarm clocks, at least ones that go off before 8am… I could get used to this.
But so far, my nighttime wanderings about the house are no reason for concern by anyone who loves me. Right now, I have the fortune of good health, and no one is watching over me to make sure that if I am not resting, I am safe nonetheless. But the same cannot be said for so many families I have seen lately, whose patience and tolerance has been tested by lack of sleep, and lack of a break.
So, we do a lot of talking about a national need for respite for caregivers, but I think back to 2006, when I was speaking about the Lifespan Respite Care Act, and have to ask now, where is it?
Where is the respite care that caregivers of people with chronic illnesses and disabilities so desperately need?
Where, I ask two years into a three-year grant to find statewide answers, is the money? Where are the resources?
I am not making light of the work that many dedicated people have put into answering these questions, but I have to say that a full six years after the Act was passed, I am frustrated at the paltry sums I sometimes can dig up as answers to exhausted families and friends who are doing all they can to provide care at home. But it is not surprising that they reach breaking points, that eventually some people give up.
Caregivers get tired, and stressed, when reminded to “take care of themselves,” when doing so seems like another thing on the list, something else to plan, and re-plan, and often figure out how to fund, often privately–if possible. I know, because I have been there, and been on the receiving end of people like me, who tell me that they wish they knew of a solution for that particular need.
But truth be told, simply having the day-to-day help for the people we loved would be enough.
Now, actually, when I say, “day-to-day,” I really mean “night-to-night.” This seems to be the one thing that I can hardly ever figure out for people, unless they have the private funding to pay for it. It is not necessarily that individuals always need that elusive 24/7 care that frequently convinces families to depend on nursing home care. But so many people seem to need most of their help at night, when they may be frightened, anxious, or simply cannot sleep. Or maybe they do sleep, and awaken from necessity, may fall–or may not awaken, may not breathe, may wander. The world runs during the day, people may visit, if only to deliver mail or a meal. But at night, in the dark, so much of the world stops, whether our own rhythms tune into this or not.
I am looking for answers here, for respite, for available personal care hours that may not be during the day… I have families who keep asking me for more help, and more and more, I am frustrated not to know what to tell them.
Evidence-Based Practices and the Full Moon
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…
Waiving the Red Flag
Today was possibly the worst day I have ever experienced in my present job.
In my attempts to keep my ears and eyes open for any sorts of small details that may make life in the real world a possibility for an individual, I usually check my facts before springing forward with the news of a lucky jackpot. I usually research, then check again.. and this time I thought I had. But I obviously had not.
Or more accurately, I was misinformed–by an expert.
I fear–deeply–that the last hopes a man had to keep his wife at home may have dissolved today. In a nursing home, the woman will be able to get funding, but at home? Well, this is what waivers are for, unfortunately. Waivers, because qualifying for Medicaid–the only insurer that pays for long-term care–requires not only a disability, but poverty, as well–hence the waiver. But the waivers vary from state to state, and usually target a specific group of people, often a capped number of them. Rules tend to be stringent: over nine years old with autism? out of luck. Under 60 with need for services to prevent institutionalization? Too bad.
And this is where I really messed up. Even to age restrictions, in certain programs, there are exceptions. If you get SSDI, you have to wait two years for Medicare–unless you have ALS. And in the case of the family I was helping, a diagnosis seemed the best hope for help. But now, we learn that supports will be minimal–and not with the flexibility we had hoped for.
It all makes me think about how much healthcare depends on such studious and constant attention to minute, complex details of not only one bureaucracy, but several of them. It makes me think that when even those of us who are supposed to be knowledgeable of a wide array of programs cannot decipher the possibilities, we are all in trouble.
I am not sure how I am going to break the news to the family tomorrow. I at first thought to head into the conversation with more expert knowledge, with more potential solutions to a very difficult situation. But I think somehow that building this sort of hope right now would be cruel–and only an effort for me to feel better, not an actual, feasible way for a family to stay together with the supports they need at home.
There are days when my stomach knots up in this job: watching a man’s face as he takes in new information from a doctor “No, the dialysis is probably not temporary.” But feeling that there are no loopholes left?
I at first was going to refer to white flags in the title of this piece, but I realized that in spite of this, surrender is not the answer. Letting life happen is one thing: acceptance is often a process that has taken place long before I see people, even in new crisis situations. Flexibility, change, moving on to better things are difficult, but good decisions we can make in the wake of such crises.
But it is more than this. These incidents, ever the more common, I am convinced–especially in middle-aged people with chronic or late-onset disabilities–are warnings to us all. Red flags are up all around us, alerting us to the emergency, the urgent need for Money Follows the Person, and more: to Money Stays With the Person, stays at home. Community First.
Waiver? No. Living at home should not be the waivered condition: skilled nursing facilities should be the exception, the thing that needs a bit of hoop jumping, and maybe a few headaches. I wish that months ago I could have spent my time with this family helping them with living life beyond mere survival. Maybe someday, some coordinator of some sort, somewhere, will have this sort of a job. But until then, the struggle continues.
Hot Summer Days
This weekend was a lovely one, made all the nicer when I was able to see several friends. One group of us first met years ago, all of us divorced, and with children who have autism. We were talking Saturday evening about the paths we never expected, the challenges, the joys, the well-intentioned remarks from friends and family: “I just don’t know how you do it.” Well, you just do, and you learn. And most of all you accept it, this life. This full life, and the wonderful friends we meet in it.
Remembering the joy in our imperfect lives came at a good time for me, as last week was filled with the intensity I never used to see in summertime. In years past, referrals slowed, and people were more relaxed when I did see them. But this year, as most of the entire country is experiencing droughts and unbearable heatwaves, consumers I see are going through their own extreme situations.
I saw a man with a life-ending (not life-threatening, life-ending) illness. It is one of the rare cases where there is no wait period for Medicare for people on SSDI–and it is a rare situation where SSDI comes quickly, without appeal. In spite of this, he cannot access the medical equipment he desperately needs right now. And why? Because he moved from another state, and has applied and been assured he will get MassHealth Standard, but has been told he cannot have the equipment for sixty to ninety days, at which point, he probably will no longer be able to use it. Oh, and he cannot get a personal care attendant yet, either–that will probably take several weeks when he does have his insurance.
Another person was in a hospital, dying, if he has not died already sometime today. It all came about quite suddenly, and he was in the midst of making plans for his family’s future. It matters a lot in this case, you see: his biggest fear was leaving his adult son, who has mild developmental disabilities (read mild: not qualified for adult services).
Another man, also dying, is due to be discharged from short-term rehabilitation, but his family is exhausted from taking care of him. Their biggest need? a ramp–and sleep. Overnight services can be difficult to get without a substantial amount of money to spend, but not necessarily impossible. The ramp is not such a hard thing to get, but it, too, can be expensive. The man is probably eligible for programs that will help his family pay for what he needs, but paperwork takes time–and time is what he does not have.
All told, nineteen referrals later, I am left somewhat shaky and bereft, I admit. And then, I wonder what could change these sorts of situations. After all, people die. They die everyday, sometimes suddenly, sometimes quite slowly. But the biggest problem in all of this is our absolute refusal to contemplate death, especially when we are healthy. We have enough trouble discussing illnesses and accidents and disability, but death seems nearly imaginable.
It is a funny thing to consider. We have lived for a long time in a world where miracles happen–relative miracles when I think of the stories I heard from older relatives, from neighbors, from older people in rural Vermont when I lived there. Mothers dying in childbirth, their newborns then dying too without a mother’s milk. Pneumonia. Flu. Infections. Death seemed tragic, but not unfamiliar–and yet, even if we can prolong life now, it always ends. Are we just distracted? Have we figured out ways to see only what we want to see in our everyday lives? I wonder.
Morbid obsession is hardly the answer, but I wonder in the three situations I mentioned if the anxiety that the families are now facing would be the same if we were to embrace the finite joy of our lives, the possibility of abrupt changes, if we were to embrace the uncertainty that our lives always contain. The bureaucracy and confusion that these families are facing is very real., and particularly difficult in the face of serious illness–but also a very difficult system to change if the illnesses that precipitate the need for prompt services bring up subjects that we fear so much.
Of course, these families are reacting now with love, with grief, and with the best that they can give. But when a topic becomes impossible to discuss, it becomes isolating, as well. And this is truly frightening. It is the society in which we live that shuns death, that shields us from imperfection, or tries to make it pretty. I wonder if we would find it easier to discuss death if we felt the ugly and beautiful lives of those around us–the sick, the aging, the dying–not with pity, but with the true understanding that they are we.
French Literature
When asked about my background, I can note the fellowship in disability policy, or the work toward my master’s in public administration, the grant writing, and the years of personal and professional experience in working with the bureaucracy that surrounds special education and health care. Or I can mention that my intended profession was to write, and to study, teach, and research literature. Yes, I did that, and at times it seems like a lifetime away. I finished my master’s in French literature and then moved to comparative literature for my doctorate. I wrote, and was moving up in the literary world, and things were going quite well until… Well, this is the story of so many people who either become sick or disabled themselves, or have family members who do. Truth be told, it is a lifetime away. In my case, it was my child who needed me more than any scholarly attempts at deciphering Borges, so whether I knew it or not, my course was set from that time on. Juggling only works for a while when the situation is serious, when appointments and anxiety set a whole new trajectory for our lives.
In my case, we were lucky in the early days, with enough financial resources to support my not working, the medical costs, the transportation costs, the human costs of fighting to get what my child needed. But things could only continue this way for a while. Add a child, or two, or three, add a diagnosis, and a divorce, and the financial consequences of the time spent fighting rather than working, I know the challenges, the loss of dignity waiting in a welfare line (even if they no longer call it that). I know what it feels like to be so close to the edge. And I also know that I am incredibly lucky not to have fallen off.
The last week seemed an exercise in remembering the lessons I learned myself, as I met with family after family on the brink. One man told me that he had been crying himself to sleep in the hospital every night. His own disability had been difficult, but when his wife was hurt and unable to work, the challenges grew: the battles with her employer, the application to Social Security, the continued expenses–previously sustainable… And a way of life that the family had worked hard to achieve was quickly disappearing.
This was only one family, in the beginning stages of such devastation, but I see them all the time. I wanted to tell the man that he is not alone, but I am not sure that the news of so many people being swallowed by financial ruin in the face of disability is a reassurance. I think of Victor Hugo, Jean Valjean appearing in my referrals not occasionally, but often. I have met people who confess to me that they have stolen food, or money to buy medication for a child. Some have gone to jail for it, and find themselves living in hotel rooms, seeking endlessly for help. But a simple background check usually makes both housing and employment nearly impossible to find. When I see situations like this, day after day after bleeding day, I can only respond to the question about my relevant education to say that French literature was entirely appropriate to prepare for this.
Truth is, I wish I had answers for the families I see. Sometimes I can find some resource that helps people, or can fight a little harder, know the person to call. And most of the time, the strength of human spirit amazes me. I can continue to build a community and to learn, but most of all, it is the human element in all of us, the stories, that have the most chance of affecting policy and change. I hope so.
Control
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.
Only Anecdotal 