Archive for the ‘consumers’ Category
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.
About Never Giving Up…
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.
More Thoughts on Thanksgiving
Tonight I am laying out a tablecloth. Pies are made, cranberries, too. My kids are busy, thinking of bonfires.
I am listening to songs upstairs, various songs, Edith Piaf, Aretha singing “Laughing on the Outside,” an assortment of lonely and lovelorn songs . I went to my garage to take out the various things that need to hide tomorrow, looking for the turkey platter. I am thankful.
Across the street I can see the lights of the hospital, the hospital where I spend so much time. I have seen more tears there than I like to think about, and tonight I think of the people there, and the people in homes alone with little more than Meals On Wheels to look forward to tomorrow. I know that for so many of the people I see in my work, these weeks are hard reminders of what could be, of last times, of uncertainty. Life gives us all this. Grace to all of us, remembering all of us, always.
Thanksgiving
I have taken off the entire week for Thanksgiving, partly to prepare for the turkey, and partly to get some sort of a break before the commotion around Dual-Eligibility starts in earnest.
I am stunned in many ways at the number of referrals that sail into my office now. When we first started the project four years ago, we expected to be inundated with calls from social workers and others who were trying to help people remain or reintegrate back into the community. Imagine… a free service that gives that connection…
But we all know the story: new project, something else to remember, a hassle. Or, if it works, another trusted part of the community, a stepping stone, a colleague. I guess I have gotten there. Many of the people I see know someone else who regularly makes referrals to me. We have a wonderful community now, most of the time.
Still standing in the way are the agencies and entities with their own interests preceding those of the consumers they serve. Growth can destroy an agency if it happens so quickly that the agency loses sight of its core values, or if those core values are skewed to begin with.
Last week was filled with the sort of heartbreak that comes from a completely messed-up system. I am already frustrated enough with the incredibly restrictive nature of Medicaid waivers. As I have stated in the past, why a waiver? Why is the system still filled with such institutional bias?
And why, when a person has a brain injury or a life-ending illness, or a significant physical disability, why oh why do we attach those waivers only to getting out of a nursing home?
To explain, we have some waivers in Massachusetts that pertain only to people who have “served time” in an institution for ninety days. If you have an acquired brain injury, for example, there is hope if you have been incarcerated in a nursing home. Money Follows the Person, a demonstration project for Medicaid recipients, also is based on that same nursing home stay.
So, Olmsteadians and others, where are the Home and Community Based Services to prevent these nursing home stays in the first place?
I need these resources, RIGHT NOW, for the people I see. They keep asking, you know.
I don’t like to tell people that the options are to become impoverished, to divorce the people you love, to play the system and make it work… It just seems immoral. It is.
I am so thankful, thankful for the mere thought that our country has ventured into territory that even questions the barbaric healthcare system that we have. We seem to ignore that people actually do age, get sick, need help, remain human.
I am thankful for my own health as I write this, as transient and wonderful as these moments are.
I am thankful for the freedom to fight for what I believe in, and I believe that healthcare is a human right.
I am also thankful for movies like the one I saw this weekend: The Sessions. Thankful for humanity, love, emotional, for the physical body and its existence on earth. Thankful for creativity, and humor, and once more, thankful for love.
Pouring Down Like Silver
The weeks lately seem to come in like the hurricane last week. Round here, wind and relatively minor destruction, some fear. Other places, much worse. And so it seems as news comes in and will continue to rush in tomorrow and possibly beyond. As understood in that infamous Chinese curse, we are living in interesting times. This was the week to think about a new database, my present work, and a new project headed our way. We survived the storm, and carried on.
So, once we were back to work and on the road again, I found myself on the one hand trying to catch up with the enormous number of referrals I have had lately. I am glad that the community seems so cohesive. Often, depending on the situation, I find myself surrounded by many colleagues in similar care coordination/coalition building/resource finding roles. I am glad that we know to call one another and work together when people call upon us for support.
And on the other hand, I find myself drawn into a brave new world of healthcare at this point, as I contemplate–deeply–the about-to-launch demonstration project known familiarly as “The Duals”.
Individuals who are dually-eligible for Medicare and Medicaid represent a vulnerable disabled population. The sorts of ping-pong games between the two insurers have delayed medical care, therapies, services, and equipment for most people at some point, often with aggravating, if not tragic results. Change is needed.
At the same time, change is frightening, especially when it feels that there may be a buck to be made… or saved. And given the sorts of systemic abuse that many people, notably those with psychiatric disabilities, have faced throughout history and throughout individual lives, it is no surprise that invitation to “new and improved” packages is met with cynicism, as well.
I am newly diving into this world, swimming deeper into the history and ideas the Dual Demonstration Project contains. The insurers–Integrated Care Organizations–have just been named on Friday. And from my early glances, I can see that it is an opportunity to explain to come to the healthcare world and tell the stories of what it is to have a disability in this world. The Duals are the pioneers, not only for this project, but for the entire Affordable Care Act, as it looks to this challenging coordinating effort.
And tomorrow… Vote! The ballot in Massachusetts, particularly, has perhaps never mattered more.
Enhancements
As I mentioned in last week’s post, it was an exciting week to watch the changing healthcare world, and the long-term support service world that surrounds it, as well.
But remembering the idea behind this whole blog, I would like to talk about the visit I made this morning, before our office closed. Like so many of my referrals, this one came from my friends at the hospital. Now, I have often thought about the job that hospital case managers and social workers have to do, and I am not sure I would be able to endure the combination of witnessing human tragedy, being abused from many angles–including some patients, their family, or at times perhaps other hospital staff. Ethical considerations come into play constantly, around privacy and decision-making, and all of it is bound by the constraints of rules, most of which have something to do with the hospital (or after-hospital care) getting paid.
Unlike my colleagues, I have the luxury of walking out of dangerous or even uncomfortable situations. I also am not present (yet) when the people I see die. But the crisis mode of the hospital setting has a definite beginning and end. I am often the connector between admission and discharge to home. And so we attempt to link the two worlds somehow, with luck, if the right programs and services exist.
So, the man I met today must have been born during World War I, I realized, though I never would have guessed this had the hospital not given me his age. He had led a very active life up to a recent surgery, and was contemplating today any other possibilities for staying independent in his last years–because he told me that he could not imagine that he really had so much longer left. (I am not so sure; he seemed closer to eighty than to the century mark, even days following major surgery.)
But I mention this gentleman not because he made my day–and he did. He was a unique individual, as he had worked in hospitals and medical practices throughout his career, and furthermore had lived through the various hardships and good times that a long, full life ought to bring. It is unusual that I meet someone with that breadth of insight into the healthcare and social service system that he had. But it is not so unusual that I meet people who fall into various exceptions and restrictions, and other reasons that our “system” has to deny people needed and requested assistance.
So, I was dismayed–no, this is not an exaggeration–to learn on Friday that federal grant funding will be used within our aging and disability community to build “infrastructure” (a.k.a. bureaucracy). I have watched over the last four years as our own front lines have turned from a great cooperative effort for consumers about all their available options, to (for the most part) a fast-track into services at that front-line worker’s individual agency.
I know this is not always what happens, and I realize also that at times an array of options may be presented at the same time that a worker goes ahead and does an intake. At the same time, it is hard to imagine a more attractive scenario for a discharge planner who knows that a consumer over age sixty will need long-term care services, and can see someone immediately rather than waiting for an intake. It was never the intention of the program, but it makes the professionals and the agencies happy. The one left out of this particular loop, though, is the consumer. Again.
In so many ways it was inevitable that a good idea would become yet another funding stream for the same-old same old without a real vision of what we wanted to achieve. From the start, I have hoped that the goal was consumer-driven, creating a streamlined “no wrong door” for consumers–not only to our own agencies, but to the community as a whole. I thought that services themselves were supposed to be created, that options would increase as a result of the stories we brought to the state.
Instead, I watch a constant tug–still–for control. When I say the words “consumer control”, there still is, somewhere, a resounding “But…” lurking in the room, a caution for safety, a discussion about “what people need”, and ultimately, discussions about assessments and service plans that make me cringe the higher we toss these lofty and made-meaningless notions into the higher offices and commissions and governments, and away from the people who are asking for help.
Everyday that I have done this job over the last four years, I have met people whose lives and experiences inspire me. I have heard stories of sacrifice and endurance and compassion and love. I have seen horrible tragedies right here, right in front of me, seen people actually die from systemic neglect. And still, we have the nerve to tap into federal funding that will create yet another layer to wade through, all under the guise of cooperative efforts and increased communication.
After watching the horses trot farther and farther from the aging and disability consortium stable, federal infrastructure money will likely do nothing more than create more competition, and less cooperation. And likely, those who have the power now will hold tight to it, and the funding, as they maneuver to favor the programs and philosophies and rules that they already hold dear.
So where does this leave the man I saw this morning? Well, strictly nowhere. He will likely remain optimistic, as he seems always to have been, and likely still not quite eligible for this, definitely not eligible for that program. It should not be so complicated. And in fact, it really should not matter. The various eligibility questions, in our country, are barbarisms, statements that we truly do not hold all of our citizens as equals, when the very basic needs to sustain life are denied, constantly, because we spend more time talking about eligibility and cooperation than we do listening to–and giving– what people want and need.
To Be Continued…
Tonight’s post will be a little short, as the week is gearing up to be an exciting one.
Last week I left work thinking that maybe it would be better to blow up all of the waivers and various funding streams and start from scratch. My supervisor suggested that neighbors with disabilities would all be trying to figure out how one of them manages to get transportation to her job in a town where no one else can manage to travel (grandfathered in). We imagined sets of people who have left nursing homes through different waivers, all comparing notes and the like. In my own experience, I have spent many hours trying to apologize to people who cannot access the same services that a friend has–even though they met because of the similarity in their disabilities. One is in her sixties, the other in her fifties. Age makes a difference.
Now, I am about to enter the swashbuckling world of duals, meaning people who are dually eligible for Medicare and Medicaid. It should be interesting. Then on for more information about Medicare changes, and winding up the week with a few ideas about what Enhanced Funding means in the Aging and Disability Resource Consortium (ADRC) chaos that we have created.
More tales from the kitchen tables soon.
When It Happens To Us
For the last several years, I have spent a good portion of my time advocating for people to remain in the communities they already know, or where they want to stay. But the reality much of the time is that sometimes it gets to be too much, either for the individual, or for the family and friends of that individual.
It is perhaps most difficult when the individual in question is a child. I see few children in my work now, but it is my experience with my own children that has shaped so many of my own ideas, and desires to create worlds that are more accessible and understanding. But change takes time.
Several years ago, I made a decision that changed everything for me. After ten years of advocating for better programs, better assistance, more understanding, I reached my own personal limit. My son, who has significant developmental disabilities, was already close to surpassing me in weight–and strength. The people I managed to hire as personal care attendants all ended up leaving, sometimes with injuries, sometimes just short of having them. I knew we needed more help, but under the circumstances, I could find no way to bridge the gap.
My son lives still with his dad now, but in those five years since he left my home, he has remained nonverbal, and has continued to grow. I worry about his future, wonder about the opportunities he may have had with better ways to communicate, wonder what may have been with more consistent training between home and school, with more in general.
In the end, my own home now is somewhat inaccessible… and it makes me sad to see so many barriers still being constructed in our communities when such fantastic–sometimes inexpensive–adaptations can be made to make our world accessible to more people.
I think about this often, think that in so many ways we limit people, and limit ourselves, when we do not think of solutions, when we do not fund healthcare and long-term care (or enough of it), when we leave people and their families with no choice but isolation.
Take a Village…
Who knew that a hairdresser would be one of the top wishes of so many home-bound people I see. A vanity, some might say, but looking good can make an enormous difference in the way a person feels.
Not too long ago, I spent seven years in a small village in Vermont. It was the setting for Hitchcock’s “The Trouble With Harry”, but it could be the setting for nearly any imagined perfect New England picture storybook, the white houses in the hills (most often covered in snow), dairy farms dotting the landscape, along with the sugar houses. It was real. I lived in such a white house, with a dairy farm across the street.
Now, the thing I had not thought about much before I moved there is that dairy farmers work harder than anyone I have ever known. It is grueling, incessant work in an often-brutal climate, and not for much glory–or sustainable income. As a result, many dairy farmers run some other business on the side. The dairy farm across the street from us had a beauty shop, called The Beauty Hut, and when it was open, Cindy styled hair and entertained the local ladies with the latest gossip. She also rented videotapes.
Several days a week, Cindy moved her operation down the street to the rest home across from the Presbyterian church and preschool. Several of Cindy’s customers lived in the rest home, and were not able to get to her shop ver easily. Cindy ended up working in the rest home full-time later on, when the dairy compact expired, but that’s another story.
We knew the rest home well, as many of the people who lived there went across the only painted crosswalk in the village to go to Sunday church. Several years before we arrived in Vermont, the church had raised a lot of money to put an elevator in so that people who could not use the stairs could still make it downstairs for the Sunday lunch, and up the short distance to the sanctuary.
It was a pity that the schools were not quite as forward thinking in their accessibility. Many a grandparent missed the Academy graduation, because there was nowhere to park. Once, when I spoke with the village principal about this, he told me to park in the grass, next to the fire lane. After I had written a letter, called the ADA office in Boston, complained for several months, the custodian went out to the front of the elementary school and put up a sign. It was not the way it was supposed to be, but it was close, and it helped a lot of people besides my son. Unfortunately, a few months after we left Vermont, my neighbor Cindy went to the school and took a few pictures for me: the signs were gone. Such was the feeling in the schools: good riddance.
We left Vermont because it was so hard to put together services for my son. A man with developmental disabilities who used to run errands for the town hall had left, as well. He was included in the life of the village, yes, but he was unable to get all the help his family needed to keep him at home. Another woman with autism lived still with her aging parents. Her sister lived with her husband and daughter next door. The woman’s mom rode with me for half the year to Montpelier, where we went through the Rural Autism Project. She told me of her fears, aging, her promise to her younger daughter that she would never have to be the one to care for her sister. But the options were limited otherwise. It was one thing the Rural Autism Project could not answer, and she left the courses midway.
The preschool was the best year for my son, with a lovely teacher who just understood what to do, and two very good aides for my one child. My son thrived, and walked every Friday with the other kids across the street to the rest home. The residents all knew us, and we visited often, talked to people as my kids admired the fish tanks in the front porch.
Sometimes a rest home resident got sick and had to move to the next village down. It had a nursing home, set back behind the general store. For a few months, we had a French conversation group in the memory unit. Many of the people lit up when they heard French, and could say things they never said anymore in English–or so we heard. Some of our students had spoken it as children. One woman used to teach it herself. Cindy’s mother-in-law lives there now, just down the road from where she lived all her life.
I have been thinking about this life now, as the leaves this year are surely crimson and gold with the weather we have had. I had never imagined myself living in such a rural setting. It was hard, in many ways–everything was a much bigger effort, from shopping for groceries to getting the wood stove going in the morning. I saw an older population, accepted and folded into the small village in their homes, in the rest home, and often in the nursing home if necessary. The services were not like here–it was more a matter of people watching out for one another. It may be the only way to survive in such a small community–you have to be accepted in the community.
I remember waiting for Ernie at the general store one day as he filled a shopping bag with the items on a neighbor’s list–she can’t get out just now, he told me. Someone was going to take the bag up to her house. I thought of how we can adapt to help people more, and I think that even in our big urban and suburban communities, people often do help out if they understand what they can do, and how.
But that was key. I do not want to paint too rosy a picture of our lives in Vermont; we left because despite the generosity of state funding, we could never find the appropriate help for my son. Problem was, few seemed to understand that people with disabilities do not have to be limited in what they are able to do. They can be taught, and challenged to do more, if differently–but that requires some degree of expertise, and a greater degree of hope.
The rest of the world moves at a different pace than Vermont, and perhaps at times with less willingness to embrace the idea of progress. Sometimes people were surprised that my son even went to school; others resented the spike in the town budget for my son’s education. Our house was egged once. The fights with schools there were just as difficult as they are here, if in different ways. It was rare to battle with arrogance, but not so rare to battle with inexperience. There were just very few kids like mine, and few opportunities, then, for professionals who could live there. Too often, my son became the school special mascot more than just another student–a sentiment of pity that I resented enormously, although I realized at last that it was the best they knew to do.
And so, I find myself thinking of that frustration, along with the loving acceptance of disability that we found from so many people. I think of the messages I heard so often in that bucolic setting, respecting the elders of the community. I remember the veterans marching to the cemetery on the common every Memorial Day. I remember the ladies and their hairdos, and Cindy. Everyone knew that the older people had earned their time, that we should take care of them, and as I think back, they did understand the most basic thing about people: that they are people, and should not be forgotten or left out.
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As I think of villages, I visited the new Edward M. Kennedy Health Center in Framingham last week, during their opening ceremonies. What a lovely space, such an amazing feeling to walk into an environment filled with optimism and hope. I have seen many of the health center’s patients in my own work, often meeting them in the cramped spaces where these talented professionals managed to do great things for years. My friends Claudia and Marcia, social workers who call me once in a while, now have room and privacy for the valuable work they have always done. I can only imagine where things can go from here… (and will write more about this in the next few weeks).
Another noteworthy item from the news: Eric Coleman, doctor who created the Care Transitions programs, has won a MacArthur Foundation “genius” award. Coincidentally (?), this was announced on the same day that Medicare began to penalize hospitals for readmitting certain patients within thirty days of their last hospital discharge. Dr. Coleman’s work has been much lauded as the programs spread… but are they enough? And on this, I will write more in the next weeks, as well.
Only Anecdotal 