Archive for the ‘community’ Category
Imagine
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?
Marathon
As the helicopters and police cheers roads gathered here In Framinghaam, it was thrilling, as it always is, to watch the racers speed past.
This year, of course, is different. It will never be the same. .
A life can be so radically altered in a heartbeat. We all know it, and yet we do not. We do not want to believe that evil is behind it, certainly. And yet, sometimes it is.
I think now about the families, the wounded, those who saw too much, those who lost so much. Strength, and love… We need this, need it so much in this world.
And the Backlash…
Last week I wrote about “This American Life” and the story about SSDI. My reaction was to applaud the exposure, the understanding of an invisible population of people with disabilities who are unable to work.
Many in the disability world, though, were not so generous in their view of this story. A number of organizations have pointed out the problem of lumping disability benefit programs in with welfare. They point out how incredibly difficult it is in many cases to get the much-needed assistance that SSDI and SSI provides to individuals and families, and that the program did not adequately reflect this. And I noticed that the portrayal of medical insurance did not tell the whole story, either. (It takes two years to receive Medicare for most SSDI recipients; Medicaid coverage is immediate for those approved for SSI.)
The truth? It is incredibly difficult to battle bureaucracy, no matter what the circumstances. It involves entering a world that seems entirely isolated from the official story, and it sure as hell does not come with a guidebook.
It hardly matters when the word “disability” comes into play; as soon as a disability affects any aspect of life, i.e., prompts the need for assistance or accommodation, the disability bureaucracy starts churning. It is impossible to move forward in life without going through it, and sadly, going through it is a brutal, demanding, demeaning exercise in proving to the rest of the world that it matters, that a person matters.
It happens in hospitals and doctor’s offices, in schools, in employment, in housing, in transportation, in everything–where suddenly a person with disabilities suddenly has to ask permission for access to everyday activities. It shocks and terrifies people who have never been through this process–and not without reason. It is not the person, however, who is shocking or terrifying; it is the system itself. No one should have to prove the need for human interaction–the right to be a part of the community–and all the things that may unite us as human beings.
What I found compelling in the NPR story was the recognition of people who are so often left out of the big picture, whether it be economic, or anything else. The story, while incomplete, has started conversations.
Define “Disability”
I was home sick over the last week, and had a lot of time and fever to lie around pondering philosophical questions…
…like, what is disability?
My mom, whom I am going to keep using as a reference whether I mean to or not, hurt for most of her adult life, and could hardly breathe or walk for the last few years. Yet, she never considered herself to be disabled. I found out how she had to use a towel to turn her key when she started her car, because her hands were so mangled from rheumatoid arthritis. Some call that an accommodation, may even find some better solution. Some don’t bother, and call it getting the job done.
But I thought more of this after kicking back with NPR on the old radio, listening as I like to, to This American Life. And wouldn’t you know it this week.. the program was all about disability.
Instead of listening to me ramble on for too much longer, please go listen. Ira Glass talks with Chana Joffe-Walt of Planet Money, who hopefully will take this stuff to the big time, meaning, beyond the realm of people who already know how discouraging it is to try to live a normal life as a person with a disability. I hope this will bring attention to the impossibility of being a person with less-than-optimum health and less-than-optimum education. Golly, can we do no better than this? I always think…
You see, I hear about places like the poor town portrayed in this episode, and I’ve lived in or near a few of them. People work hard, physically hard, do what they are supposed to do, and eat what they are accustomed to eating. In years past, even in my childhood, there was some wholesome aspect to it all, but as factories closed, as high fructose corn syrup got put into everything, as satellite dishes and video games replaced the outdoor sort of entertainment I remember, hope seems to have evaporated in towns like this. I exaggerate, perhaps. Or not. I stereotype. I apologize. There is always more to the story, and nuances that are missing. But still, it is hard not to look for something, when so many people are in such tough circumstances.
But is this what it means to define oneself as “disabled”? Is this all there is?
Ticket To Work?
Is it impossible in general to escape not only disability, but to escape poverty in general? It takes a really good job–a huge leap in most cases–to be able to survive beyond the world of TANF and SSDI (or SSI).
Work and love.. Freud said that these are the two things we need to be content in life. If we take that ability away, are we truly fulfilling our own Declaration of Independence?
We hold these truths to be self-evident, that all men are created equal, that they are endowed by their creator with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Happiness.
And indeed, are we not creating inequality? Are we denying equality?
Just asking…
Why Am I Waiting Here?
Back last fall, when my mom had experienced another frustrating exchange with her primary care physician, she announced her plan of action.
“He never listens. I am going to bring this up at the next appointment.”
At that appointment, my mom swiftly asked her doctor, “Do you like me?”
I was taken aback by the question, and I believe the doctor was, as well. In talking to someone else about her concerns, my mom had learned of personal tragedies in her doctor’s life. Perhaps that explained his inattention, she thought. Or maybe it was true that he just didn’t like her much.
My mom was a difficult case, in many ways. An order to cut back on salt that she received in the hospital seemed so overdue that we wondered if it really was the first time she had heard it. She had given up smoking, albeit pretty late in the game. Her lifestyle was not an active one, comforted as she was by being home, immersed in a book, or Downton Abbey… damned be exercise. Noncompliant, I am sure.
But aren’t we all? I mean, really. There is such a big relief in getting past that encounter with any authority… you know? those days, or weeks, behaving as we are supposed to… not necessarily to be healthier, or better in some other way, but to avoid the scolding (or worse). And then, we walk out, free at last… this is the problem with the relationship that even entertains the notion of “compliance”.
And as I have said so many times before, compliance may be more a question of feasibility. If an individual cannot afford the prescribed medication, how will he be able to follow the doctor’s orders? If she cannot get to the doctor’s office because a ride never shows up, how can she avoid being a “no-show”? If I do not understand why you want me to change a habit, if the reasons you give me seem so intangible, why would I give up something I love, or start something I dislike? And speaking of this, why should I trust you at all?
I am very sure–have felt it myself at times–that what doctors perceive as noncompliance may indeed be just that: stubborn refusal to follow orders. In my mom’s case, I know that it was hard for her (though she did it anyway) to make the trips to the lab for endless blood tests for a doctor who seemed to dislike her, and who also seemed to have no notion of why these trips into the lab were so taxing on her. It is hard, after a bad–or even traumatically pointless–experience, to return to the doctor who started it, and have faith in the advice (or orders) that this doctor, or any doctor sometimes, hands out.
It is clear in this year that the climate is changing enormously. There is a much more noise now about the need to take the consumer’s point of view seriously. Is it real? Slowly getting to real, yes, I think it is. How can we make healthcare easier? How can we deliver care more conveniently, and effectively, not just for the professionals, but for the people who seek the care? I see people from the home care world now popping up at technology-related events where I never saw them a year ago. Social workers will cover the hospital not just during weekdays, but at night, on weekends, so that people who end up there will always have the opportunity to talk to someone about the realities of life, no matter when they are in the hospital. Can we afford continuity of care? I hope that we see the error of years of neglect, at the real costs of constantly cutting out the human contact in favor of the urgent, impersonal procedures. It is time that we need more–time for listening, and for actual, physical help–and smarter ways to figure out how to create more connections, not fewer.
Sticks and Stones
The man was nearly sixty years old, a generous guy with a productive life. He loved his family, and enjoyed his work at the local supermarket. But there was one thing that brought him to tears the day I met him: the R-word.
I do not need to repeat the word. He told me he was “in the slow classes at school”, and recalled the habit he developed so long ago of hiding in the bushes after he got off his bus. It was only a short walk home from the bus stop, but best, he said, not to have to walk in front of the bullies who taunted him with that word. He had heard it again recently, from someone who had hurt him in other ways. He said that hearing that word again brought back a lifetime of pain, pain that he had escaped largely in the adult world, but not without some journeys into worlds with alcohol and other distractions.
The word was more than a word, of course: it was a way of limiting him to a certain place in this world. The fights he is fighting right now are all around that. He wanted to make decisions about where he lives, whether he walks or goes by bus somewhere, who his friends are. And everyone “worries.” A diagnosis of mental retardation implies a certain need for safeguarding. And this man did not want to be “kept safe”. He wanted to go on living the life he had lived before.
Words can hurt, just as badly as sticks and stones. Worse.
But it is not only the obvious slurs, the outmoded names that differentiate people who have faced discrimination. Any diagnosis can limit, in its narrow description that reduces the person to the medical condition. We seek some way to order the chaos that being human presents to us, and in some ways it is helpful, helps us chart a way through unclear paths.
But a diagnosis is only as good as a vague road map; it does not show us who a person is, or how the medical conditions may affect the life.. or what the life is really like at all. Without consideration of the whole person, that clear path on paper may turn out to be much bumpier and less predictable than we want it to be. It may also exclude joy, and hope.
I hope that as we shift focus from a system of medical management to an actual health system, we fight the urge to categorize people as we categorize disease. I hope that we can remember the power of words, and the danger of reductionism, the pain and indignity of dehumanization.
My Inspiration
My mom died around midnight Saturday night.
She had been struggling for many years with a number of chronic conditions, all beginning with a diagnosis of rheumatoid arthritis in her forties. Over time, things became harder and harder, her lungs and heart weaker. She rallied forth, every time. She was strong, invincible I thought. But the cold she caught in a short-term rehabilitation unit was finally too much. An infection developed, and within two days, her kidneys failed. There were no heroic efforts to intubate or dialyze–my mom knew a long time ago that she never wanted those things. She talked to us for as long as she could, until she faded, and never awoke. I will always laugh as I think that she said she was sorry she would miss Downton Abbey this week.
My mom died an ideal death. The one blessing of losing my dad in 1985 was that it gave us plenty of time as a family to discuss death, and not to fear it. My dad had lung cancer, and was sentenced to certain death over three months before he actually died. In that time, we as a family spent our time in an endless cycle of work, dinner, hospital, home. Repeat. Several panics before the end–this is it–he pulled through, only to writhe in pain. I remember even as a twenty year old thinking that the fears of morphine addiction seemed ill-placed, as did the very arrogance that surgery on a dying man is a good idea. As I recall, we were never given a choice of what should happen, and if we were, we were probably still seduced by the notion of medical miracles. The last words I remember hearing from my dad are “It’s all right. It will be over soon.” He must have seen my frightened face, my anguish at the intensity of his suffering. I avoided all doctors and hospitals as much as possible–for years–until my own children were born.
I have spent an enormous amount of time in hospitals since then, in all sorts of situations. I have to say, I am most often impressed by the care and knowledge I see, and my mom had remarkably good care at the Cardiac Intensive Care Unit of St. Luke’s Hospital in Kansas City.
If the acute care of her final days was beyond excellent, the long-term care options preceding that time were filled with anxiety and frustration. Too little money to afford assisted living or private home care, she pieced things together, accepted mediocre services until they became more cumbersome to allow than to refuse. (The one exception was the man she found to drive her on errands. His name is Diego, and he could not have been kinder.) My mom worried, a lot, and she became sicker.
I was frustrated, because I am supposed to know my way around this. But then again, looking at the fantastic facilities where my mom died, considering the costs of those heroic efforts that many people do try, thinking of the enormous blessing that my mom’s Medicare and supplemental insurance will pay for it all… I imagine we can create long-term care services of similar quality. As we see the shift in the years to come from the sexy world of specialties and surgeries to primary care and prevention, we will feel the difference in our lives, all of our lives. We have to.
Dream On!
I was meeting on Sunday with a visionary, a person who had a bigger idea of what would make a vibrant, living, artistic community, and he was describing the various challenges he has found with the people who spend so much time rooted in the “reality” of things as they are right now.
It’s a frustrating thing to have a great idea of what would make things truly great, only to be reminded, constantly, of all the good things that we can do right now. It feels sort of like having a bake sale to build a new school: laudable, perhaps, but a great effort that entirely misses the potential of those precious moments, and dreams small.
I think this often, as I think about tests and pilots and demonstrations that have a great vision in the beginning to solve a problem. The ones I have most encountered in my recent career world have something to do with access to services, and facility of navigating systems that can ideally fund the most basic needs, level the playing field so to speak for people who need wheels to get around, or an extra set of hands to pick things up.
There always seemed to be some prevailing notion that everyone can have adequate assistance, if only the system were simplified into one easy method–or no wrong method, at any rate.
I sometimes think back over the last few years, and wonder if the numerous individuals who benefited from that ease of access to services are now living better lives because of it.
I ask this now, as we contemplate the future of healthcare. I ask it, because I see the future efforts at developing new infrastructure, building new programs, and I think about the last several posts, in which I lamented the utter lack of essential services for various age and disability groups. All the knowledge and navigational assistance in the world is only helpful in so far as it stops an endless maze of pointlessness. And perhaps the visible hole of need brings along enough anger in its wake that more of us feel motivated to speak up.
We need a bigger vision. But it really is more than that, as I believe that the vision is clear enough and common enough to many people who have worked in or personally encountered the health and human service system. Dreaming of some world where we can respond quickly and efficiently to the obvious needs for housing, transportation, and personal care is not a waste in itself. Only, we do not need more focus groups or advisory committees; we need to start building. Action is bold, and it is unlikely. But it is absolutely essential to stop wasting time and money on securing our comfort zone. The small efforts may feel good in the moment, but really, when they keep us from focusing on the big picture, all they really do is waste our energy, and make us feel good about it.
Wishin’ and Hopin’
and thinking and praying…
Though it’s early in the year, we seem off to a tough start. The obituaries (yes, I read them) are a mile long, daily, and the hospitals have been swamped. The calls are more urgent, despite the increased awareness I have noticed about programs that used to be “the great secret” or otherwise underutilized.
The damning thing about knowing all the options is that it makes the situations with no options all the more visible. It gets harder and harder to be the bearer of bad news, but it is so often the situation we face now. I mentioned a few of these groups in my last post, but they keep returning, constantly, similar situations, different stories. It seems obvious that change is needed, but it cannot come fast enough.
It seems so obvious that we need houses we can access, neighborhoods, transportation, and help. And yet, as we see solutions so easily adaptable at times, it seems far from everyday thinking. Stairs? No problem. More highways instead of public transportation? No problem. It seems as obvious as global warming–we are burning, like Rome. Yeah, I know. It sounds like fool talk.
Perhaps it is the thought of winter, here with us for a few more month, but I do not want to wait, to watch more people in despair. I want to skip to the part where we feel productive, where the change seems to be around us, people talking. The number of people who are truly in trouble, suffering, seems to be growing. The danger is that we are not prepared. The advantage is that it will be impossible as the numbers grow for this problem to remain invisible, ignored.
Resolutions
I resolve. I solve. I wish I could solve the difficulties I see in the lives everywhere.
In particular, I am thinking this eve of 2013 of the many, many people who by some stroke of bad luck are seen as “less worthy” of entitlements, like life.
I am thinking of the non-elder community. Not to discount the very real needs of people over 60, but after four years and 275 visits to consumers, I have to say: age really is just a number. I am saddened enormously that on a policy level, we still remain separate, we aging and disability folks. In many respects, I think our communities are farther apart than ever right now.
I have thought about this over and over as I have worked in my own mind without these sorts of biases. In spite of my efforts to look at people as people first, and categories second, I remain frustrated by the “eligibility” requirements of programs that help people.
A few words of advice:
Do not acquire any other chronic, progressive disease that hits in your 40s or 50s. It will derail your entire life and leave you bankrupt just when your teenage kids and middle-aged spouse need you to be in prime earning power. If you have to get sick like this, wait until you are 60 and can get help more easily.
If you have to have a developmental disability, do your family a favor and score low on your IQ test. Please. Otherwise, you will not qualify for the help you need, and will either exhaust your family or be left to figure out a sometimes cruel and confusing world on your own.
Do not have a mental illness. Just don’t. There is a reason that people who recover from mental illness call themselves survivors, and it has more to do with the “treatment” system than it does with the illness itself.
I know this all sounds quite cynical, and sadly enough, I could go on and on. It is difficult not to be pessimistic as we approach the many changes happening in the disability world right now. Over and over, we see younger people with disabilities all the more marginalized–and perhaps more tragically, fooled into thinking that they are truly included in the unified effort to streamline services and health care. I believed in these efforts, once, and want to think that understanding will still come.
But I see much more often that money changes hands behind closed doors, that those who do not understand the very human right of self-determination are left with the funds to reward those who are compliant, those who do not question, those who play nice…
I resolve to cause more trouble, to question more, to speak up, again. And again.
I resolve to tell these stories, to love more, to convince you to love more, too.
Only Anecdotal 