Archive for the ‘advocacy’ Category
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.
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.
The Last Taboo
Last night I had the great pleasure of seeing Alexander Freeman’s new film, The Last Taboo. I am so glad to have found out about it just a few nights before the screening, so glad to find this vehicle for change.
There are two things that we Americans just cannot discuss: death and sex.
I spend a lot of time talking about death with people who have to. But it is so easy amid the housing and transportation concerns to dismiss the basic human need for–right to!–love. And touch. And pleasure.
I will be writing more on this in the future, and will soon share some projects in the works around this topic. In the meanwhile, check out Alex’s profile (featuring this film and previous work) here.
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.
Only Anecdotal 