This Saturday, I went to my first translation event in over twenty years. It was the twentieth annual conference of the New England Translators Association (NETA), and I was so happy to be there this year. I learned a lot in one day, finding myself back in a world that has changed so much in so many ways, but in others has stayed much the same.
I say this with some embarassment as I think back to my young self, so filled with ambition that I quit university rather than return after my father’s death to what I saw as less than what I wanted in my life. I told everyone that I wanted to be a translator, and literally knocked on doors all over St. Louis–anywhere with the word “international” in its name–until I got hired somewhere.
I was astoundingly lucky. A woman named Beatriz (Betty) Calvin had a translation company, and talked to me when I walked nervously in the door. I was twenty years old, had never been in another country, and learned my French (which admittedly was not half bad even then) from subtitled movies and pen pals.. and a few great teachers (thank you, Mme Eggers).
A few days after I visited Betty’s company, Calvin International was juggling an enormous job–translations and conferences for a big conference with a big client. They needed help. Could I come in?
I did help out, for several weeks. Within a month, I was hired, full-time. It was my dream, working in an office where I was the foreigner–the only native English-speaker, I managed projects, but also edited translation. I researched, and practiced, practiced, practiced. My French became so much better. Even my Spanish became pretty good (Latin Americans are enormously helpful teachers!). My German improved. I learned how to act around different cultures, became sensitive enough to pay attention to what everyone else was doing and saying, and adept enough to ask questions when I simply did not know.
I eventually decided, with some pushing from a poet who saw some spark in me, to return to university, and study literature. I managed to stay in school for a long time, and thought I would stay forever. I loved it. I never regretted it. I abandoned even that dream when the reality of my children came into play. Disability does not always leave room for the intentions we think we have in this life, but it often helps us become more who we really are. Boundaries. Understanding.
And so it was as I sat in the afternoon session thinking as I listened to Eduardo Berinstein’s discussion on why technology–despite its inevitability–will not supersede the abilities of the human translator.
The talk was titled: “The straw that broke the camel’s back OR The drop of water that overflowed the cup.” The reference was to common expressions… the point at which we cannot take anymore.. expressed so differently in two languages, and yet, conveying the same meaning, at least in the same context.
I suppose we could go back and discover more of the development of these idioms. Why straw and camels? The drop of water seems perhaps more clear to me, but we would never say this in English. Simply “the last straw”–this I often hear, but the camel is always understood. Camels so exotic; phrase origin, in truth I could never really even find a definitive source for this. I can imagine these phrases in works where we would need an enormous adeptness to get the point.. how to convey, for example, some rhyme, or some reference to, say, those camels, in some lyrical turn of words in a literary piece, obvious reference to the phrase, with all the connotations and denotations, and… Well, I get ahead of myself here.
I pondered this, though, on my drive home, and for much of my day afterward, thinking of what pushes us to new places in our lives, what breaks us, what sets us free simultaneously, and what it all means.
I think back to a day when I sat, still frustrated with my lack of progress in my doctoral work, but not caring really so much about it anymore. I was instead looking longingly at a boy who at nine months still was (with his older brother) the focus of my attention. My younger son was not like his older demanding, ever-frustratingly barrier-breaking brother. My younger son did not try to reach for things that he clearly liked. He had not yet succeeded even in rolling over. He cooed and smiled at me, and loved to interact. But clearly, when the pediatrician told me that nothing had changed, when he said that my little boy could still live with me–even though–, I knew on the contrary that absolutely everything had changed.
My younger son lived with me for many years after that, as life became something quite different from what I had imagined, what we had imagined. The words from the doctor that day, I think, were the point that these phrases convey so well: that drop of water that would not fit in the cup we had prepared; the straw that our camel could not sustain.
Life did change dramatically, and as my children grew, I watched and learned. My son, now nineteen, does not speak at all, least in words. He has often made me think so much about the very nature of language and languages in this world. I so often can sit with him, despite his lack of words, and know what he means. His face lights up when he sees me, and there is a sense of wonder that fills me. I am filled at the same time with a strange sense of the irony in having a child who cannot speak in any official language to me or to anyone, despite the fascination I have always had throughout my entire life in the nature of languages.
I have had the luxury of returning to worlds where we bridge the gap of cultures and language. It has been incredibly rewarding to me to return to a place where I can consider the place where I started years ago with that desire to understand, to break down the barriers and boundaries and borders that separate one human being from another at the very source of our being, our meaning. What do we mean? What do we want to say? What do we mean to accomplish in our lives? And then, what stops us? What are the walls, the doors, the stairs we cannot climb?
I have moved into new worlds in the last few years, where I still see the bureaucratic efforts and frustrations, the wish to build (companies, worlds, dreams), and the efforts simply to maintain equilibrium in it all. Only Anecdotal, the stories that here started as discussions of systems of care and the people they affected, is evolving. The stories continue, perhaps with difference foci, but in essence, they remain stories about meaning: how we express who we are, and what we want.
I think of this as I think about Saturday, the relevance of translation and interpreting in our current world, so many languages at our fingertips in seconds, so many desires to have immediate access to worlds we used to wait years to see. We may wish for that immediate fix, the instant translate available so easily, and we may get the jist from this, but do we find the deeper sense of who we are as human beings? Can we read between lines, or do we end so often with word-to-word efforts, in utter jibberish that makes us throw up our hands in complete misunderstanding?
I realize that the old battles remain, as they did back years ago at Calvin International Communications, that words on a page are not so easily transposed into other languages, other cultures, other minds. But I do think that as we have become used to the smallness of the world now, we do desire–and will desire more and more–the quality of our experience much more than the quick fix of the general idea. Translation, interpreting, understanding take time, and expertise, and patience. It will be the desire in our experience that separates art from mere utility, and that brings us to embrace that art, and our own humanity.
I was recently reminded of a quote attributed to C.S. Lewis: “Isn’t it funny how day by day nothing changes but, when we look back everything is different?”
This quote has reminded me, in very real and tangible ways, of my own gratitude, the thanks that I owe to so many people and circumstances in my life. My children, my friends, my community.
In the last two weeks, we have indeed seen enormous changes, too, perhaps the culmination of so many small steps. Not all do I face with gratitude. I still cannot fathom the tragedy in Paris. Not yet. Not sure I ever want to.
But other changes in life I have considered, and am right now as I contemplate the last year and a half from a slightly more philosophical viewpoint, thinking over the perspective I gained moving from one world to another.
When I began working at the Consulate, the manager who hired me had described the role as “social services for Canadians in the US”. This was largely true, and as I saw it then, largely what I had been doing in the field–more like the trenches–for several years prior. I had worked around illness then, and disability, and dire situations that were often chronic; though, when I saw them, the need was indeed critical. I held a hand, shared a pot of tea, sat and listened, all the while wishing for a figurative hose to put out fires that had often smouldered for years before erupting in flame. But too often, my only defence for my clients was a squirt gun, at best, and always, always, I wished for a magic wand.
I discovered quickly that a few things were quite different in the consular world. First of all, I cannot speak for the whole of the Canadian government, but from the start (my interview featured a test, by golly), it was clear to me that excellence was an expectation. That is it. You prove yourself, then keep working at that standard. I hit a huge learning curve of regulations and details, and I simply had to know them. I never even questioned that, and I enjoyed the challenge.
This had always been true, but now, rather than simply holding this knowledge as advantageous in my work, I felt the weight of responsibility much more. Was it the security clearance? Was it the various exams, and permissions, and processes? Was it the diplomatic cachet? Bilingualism? I am not sure, except that the culture supported high quality work. It made me happy, too, to feel I was rewarded in perhaps subtle ways, and most of all from our clients, for giving it my all.
The above C.S. Lewis quote came from my manager, who spoke at a lovely party held on my last day at the Consulate. My term has ended there, and staff who had been on leave have all made their ways back into the work I had the great opportunity to live in depth. I will miss everyone. There were some very long snowy days riding the commuter rail, days when I was first learning all the various details of creating a document that for my entire life has been my symbol of freedom and adventure… and became as I saw it also a very real ticket to access, connection, and security. Winter. The very real lack of control we have over so many aspects of life on earth, and the many, many ways we learn to maneuver and thrive and love in spite of it, sometimes because of it. It was about the same everyday, in most ways. A few surprises, but the same walk to the station, people I met along the way, same roads, same tracks, the same gorgeous view of the South End, and the same kind faces who greeted me and shared the space everyday. It became natural after a while, as it does, and fun, and amazingly satisfying when there was a problem, a puzzle to work out, and we could do something truly meaningful, even small.
But now, looking back at where this all started, I see that Lewis was right. Everything truly is different.
And it continues, and onward to the next adventures, projects, my great desire to connect, to hear more stories and meet more people, to create something beautiful, useful, better in this imperfect, fabulous world. It is a wonderful life. Happy Thanksgiving.
I have surprised my own self with the title of this little piece.
I hate when rules bog people down, and make it next-to-impossible to get anything done. I hate rules even more when they seem created to keep people out, rather than to devise a logical way to let them in.
I think about that question of entry, access, everyday. As I said in my last article, I may be feeling optimistic by an extraordinary ability in my present job to gain access to needed paperwork, documents–most often a passport. But it is a powerful thing, a passport, granting permission to enter, to cross, to leave.
My last jobs have not been so easy in this respect. Canadian passports require an extraordinary number of checks, I think–it often seems to surprise people here in the United States, who are not so accustomed to actual reference checks, or very specific photo requirements. A MassHealth application, though, requires a lot of documentation, as does a SNAP application for food stamps. There may well be no reference checks, but the systems in these two institutions are often kept ambiguous by overwhelmed staff who are most likely paid not enough to meet the high standards of customer service that are absolutely obligatory to meet the need well. Are there examinations that TANF employees must pass to have access to a database? I do not think so. Does MassHealth go beyond an initial training period to verify that employees really do understand their responsibilities, as well as their limitations? I am quite sure this is impossible.
And yet, when immersed in the trenches of people in need, we learn a lot. We learn, for example, that recipients of Supplementary Security Income (SSI) through Social Security automatically receive MassHealth Standard. We learn that permanent residents who are entitled to MassHealth nonetheless cannot receive all benefits for five full years–and this can be devastating to individuals with disabilities who are in need of long-term services and supports. We learn that immigrants who do not have green card status may well receive no or very few MassHealth benefits at all… and it is hard not to advise a parent, for example, to apply for permanent residency, for example, for their children who need more than a safety net.
The only problem with this sort of trench-learning is that sometimes we are wrong. Sometimes we have heard enough to make ourselves dangerous, and assume that the understanding we have gained in our own bureaucracy has made us experts in all others. We would do so better to embrace the complexities and build relationships with our expert colleagues in other systems. But this seems a difficult concept to achieve.
Now… I know I seem to be straying from my original defence. Do I like monotonous paperwork, and complicated regulation? Well, no. Hell no. But then, I think about it a bit more… The rules sometimes are complex from the start, due to the legislation that created the program. But really, this is rarely the case. More often, I believe, the system becomes more complicated as we consider the individual within it. We consider just one person who does not fit a certain mold, but still needs something, and we make an exception. Complication #1. Another individual happens into the system, and needs something else. Complication #2. An individual to whom complication #1 applies has other resources that cancel the real need for the program in question: complication #3. And so it goes. A community complains about the high level of X, and we face complication #4, 5, and 6, sometimes all at once. It is easy to create institutions, and we must create them, I believe. But making them fair is even more essential. And this is where the bureaucracy begins. It is a real shame when we do not expect excellence in our public servants’ understanding and administering of this bureaucracy. Perhaps if we had that, these systems would not have such a terrible reputation.
I do believe that most people who work in these systems want to be helpful. In a customer service-oriented environment, “making a difference” is the true motivation for most employees. Hard to say what happens in translation there. A crappy database? Bad management? An utterly impossibly large number of clients to handle with that crappy database? Rules that are created more to micromanage underpaid employees than to give employees tools to help clients? Who knows?
But I think of the last week, for example. A woman who may have been considered quite foreign in appearance arrived at our office requesting assistance with her children’s Canadian passport applications. As I reviewed her documents, I asked her a bit more about her children, and their citizenship, to see if they had other documents for travel. They were Canadians, yes, born there. The parents were not. The parents were, in fact, US citizens who had lived abroad for years. They had adapted the lifestyle and customs of another country, and came back to North America to study, work, research. But both parents were born in the US.
The mother told me that she wanted MassHealth for her children, and was instructed by a MassHealth agent to apply for permanent residency for them. Children of US-born citizens.
The children, in reality, ARE US citizens. They need proof of citizenship, not permanent residency.
The cost of green card applications is enormous. The mother later took my advice to verify her children’s status with an agent at the US Citizenship and Immigration Services office. She learned, first, that her permanent residency application fees would not be refunded. She learned also that she did not have to resubmit paperwork for proof of her children’s US citizenship. Finally, she learned that her children were US citizens–yes! it was true! Upon receipt of their US citizenship certificates, they will be entitled to all privileges as American citizens, and without a five-year wait for full benefits under MassHealth.
In the meanwhile, I encouraged her to contact MassHealth once more. Unfortunately, in so many bureaucracies, the individual in need does not have access to an individual within the system. So, reaching anything more than a badge number or the next available staff is nearly impossible. I suggested that she could try going to a community health center, where an employee could access MassHealth as a professional, and perhaps find something more through that gateway… Another layer here to that system–that virtual gateway accesible to whom?? To hospitals.. to community health centers… to some provider agencies, advocacy agencies. It is a difficult system, fluid, and not smooth to sail. I hope her children can get what they need quickly here. They are entitled to it.
I defend bureaucracy, though I understand why we hate it. We hate it, because it is so hard to navigate through institutions that veer from their frameworks to try to be fair to all. We hate it, quite rightly, because it sometimes IS ridiculous, and more focused on preventing fraud than on the original mission. But try we must, and understand we must.
For, our understanding, in reality, is understanding the very complexity of our humanity, and the responsibilities of our government to provide fair treatment to the human beings who depend on it.
And do not be fooled by notions of self-sufficiency: we ALL depend on our government to do things for us. And we all are only human.
Funny how it is so true.. the more things change, the more they stay the same.
I should explain, at least briefly. I have not posted here in a year–not because I have no stories to tell, but because at the end of the day, 99% of the time, I can hand the clients I see now the thing they need. (And… yes, I no longer call them consumers–removed from one world, I have decided that client IS an empowering word–they hire me, really; I am a public servant, if a local one).
What this his has meant, personally, is that I sleep at night. I get thank you notes–not always joyful outcomes, but resolved ones. It is rather amazing to me, now, that I have the power to hand someone a document that opens a door, that breaks a boundary. I still see crises, but people come to me, and I can usually get them where they need to go. Sometimes the stories are not happy. More than once, clients have come to my little booth in a time of grief–a last moment, a funeral, a goodbye. But what they need from me is specific. And I can usually get it for them.
But it is so much more than this. I realize now the level of burnout that comes from crisis situations. I still see crises. But I am not burned out.
I was thinking of this earlier this week when I was scrolling through the Kaiser Health News. I used to read this daily, along with the local obituaries, and it is a habit I have not yet broken. The story that caught my eye told of emergency workers–no doubt far more apt to burn out than I ever have been. But I did know the numbness from seeing such difficulties, the nursing homes, the recent diagnoses, the bills…
The story told of Jonathan Bartels, a nurse at the University of Virginia Medical Center. He described the moments following a patient death, a moment when a tired trauma team may well feel defeated, and the chaplain who asked the team to stay in the room for a moment, to honor the life that was.
This moment made a difference. It is attention to a life, to the person, to the work to save that person’s life. It is a moment that gives permission to that trauma team to care, and to feel supported in that decision to care.
It also is a moment, I think, that a team can step back and see just how much the work that they do matters.
I can imagine the bureaucratic nightmare that could be the daily routine of my work now.. It’s not, though it can be, some places, sometimes, as we see on a daily basis across the world. Border crossings can prompt all sorts of demands, and I realize that I am lucky now to be able to do what I do.
But what is the difference, really?
I also think of the world of long-term care that I used to see daily. As I think through the problems around the critical moment of an accident or diagnosis, people were not always sure what it was that they needed. But after a bit of reflection, this was rarely the real problem–most people could name many things that would make an enormous difference in their quality of life. They needed help with housework. Transportation. A hearing aid. An accessible place to live. A new wheelchair cushion. A new wheelchair. Food. Not to lose everything they owned due to the exorbitant cost of their medical care.
Can it really be so difficult to solve?
Expensive, yes. With resources, though… not so incredibly difficult.
Expensive to solve, yes, in a world that has not considered that people do fall down and break things, that they get sick, and sometimes cannot climb stairs that they used to climb, cannot see things they used to see, cannot say things they used to say.
But in the end, it is far more expensive still to leave people isolated, impoverished, and depressed. In the long run, I know it is.
I felt this frustration often, despite the many people I worked with who did want to make a difference.
But there is an underlying message that is sent when resources are cut, when employees don’t have the tools they need, when there is not enough office space, when there is no time given to reflect for a moment… The message comes through loudly: this does not matter so much.
But it does. It matters a lot.
The world sees things it could ignore so easily in the past. As the tech-savvy get older, and tweet and post and video-chat their frustrations more and more, I cannot imagine that the rage at “the system” will remain so easily contained in this realm for much longer.
I have pinched myself sometimes over the last year, riding the train to the big city, protected by the glass of my booth and the reliability of the systems I depend on to do my work. It is amazing, really. Nice. Not extravagant. But it enables us to provide the excellence our clients deserve.
I used to go into the trenches… a word I do not use lightly, nor with disrespect. I loved seeing people where they were, where they lived, where they could show me firsthand the life they experienced. It was generous. It was often tough. It was real. It was sometimes lovely. More often, though, it was tragic, and could have nearly always been better.
As I always saw, though, we can make a difference, even in small ways. The things we must always give to people who come seeking help are these: listening–we cannot know if we do not hear and remain patient in the process, clarity–what we can and cannot do, truth–when we know it (not passing the buck to another messenger when truth is hard), and competence–and this is completely on us. We owe it to ourselves and to the public we serve to do our work well and to care about it.
I have thought over and over about systems, how things work, infrastructures, how an inefficient database can throw everything off. how everything needs to work well at every level, how giving good employees good tools–and putting trust in them–makes employees work better, not less, I do think that most people do want to do good work… but without the support and trust, the crises do quickly burn people out.
The trust, then, is also giving permission–expecting–people to care, to take it personally. A pause to say it all matters, that we should care. Caring is really what makes all the difference, in everything, at every level. It is what creates the changes when they need to happen.
The last week was a sea of phone calls, visits, and trying to stay organized and focused. I was also trying to finish long-overdue reports. It is an arduous process, namely because the data we collect does not match up with the data that is requested for one particular program’s report. Therefore, instead of hitting a few buttons and spitting out data, I need to go back and do it by reading notes and making tally marks–remembering in the process the details of daily life of every person I saw during the quarter. Sometimes it kind of gets to me.
It is the nature of the job that everyone I see in my work is in some sort of crisis situation. From the hospital (where I often meet people for the first time), they may often go to short-term rehabilitation hospitals (or to nursing homes that fill that function), and then home by the end of my time with them. The best-case scenario, I have to admit, is when a person never wants to talk to me again.
It happens fairly often. An individual is in the midst of catastrophe at one moment, but it is over after a time. Life goes on, and rarely does anyone want to remember any details from the lowest point of a tough spell. When someone says, “No, we are all set,” I am happy about it.
But this is not always the case. Many people simply die. Or sometimes I am unable to reach people for months, but they turn up years later, with more problems, greater financial burdens, and perhaps loss of hope. Other times, they hang on, calling often for some sort of help, hoping that among my “options” is one that will actually remove the barriers that keep them so far from being the people they are, or were. Sometimes there is something that does help. Sometimes I see people I met previously, sitting in a restaurant, laughing with friends–when months earlier they were, say, in a nursing home. This is a good day. Most of the time, the best I can do is listen, and not lie when I say that itwilltaketime or youdonotqualifyforthat or youaredoingallyoucan. My role is limited–I cannot be a companion, or even a friend–as so often becomes quite obvious.
I have been thinking of this quite a lot lately, that going into people’s homes, entering into moments of great change with them… it is so difficult to remain neutral and unattached, but it is all in the name of survival with so many people to see. It is also what we are trained to do, in the name of professionalism. I don’t mean that we are expected not to care. We are just expected to remain objective and fair. It is a tough balance to do that, and then also to remain healthy ourselves.
I have been on the other end of all this support, especially when my boys had in-home services. At times, my family life revolved around whichever therapist was due to show up that day, sometimes (when we were lucky) joining another support person who came everyday. From the receiving end of these sorts of in-home supports, I have signed agreements of understanding that the relationship is limited, and not permanent. People who came to help my kid could not accept an invitation to bring their own families over for a friendly dinner with us later on, no matter how close we felt to them, no matter how well they fit into the fold of our family. It is dramatically difficult to be in this situation, to need someone hands-on for such enormous quantities of time (time that then cannot go toward reaching out to make a new friend, who can actually be a real friend–and isn’t it ironic that everyone keeps telling you to do this!), and then to say goodbye.
It is difficult, as a professional, to sense the intense isolation, the inadequacy of things like transportation, to see the gaps in much-needed assistance, the fear in people’s faces as you close the door behind at the end of the day–and then to walk away, to have to refuse to give that ride, to stop off and run that errand, to spend a little extra time when others–many others!–are waiting for not-en0ugh-help. It is sometimes a guilty feeling, too, to be relieved to get away from the people who try our patience and drain us… They are nearly always lonely, too. The health risks of loneliness have been documented (http://www.ncbi.nlm.nih.gov/pubmed/20652462), but we have yet to figure out a solution to the isolation, other than institutional care. There must be a better way to preserve individual choice, and yet at least support the means for people to sustain friendships and not just caretaking relationships.
So we leave our home visits, and we see the pain in the lack of connections for so many of the individuals we see. Sometimes we feel it ourselves, in our own desire for meaning, but ultimately in our utter inability to supply the one thing that people need the most–which is one another.
The referrals continue to pour in from One Care for assessments around long-term support services.
This week I want to focus on the very nature of our “long-term support service” world, and what happens on the ground when it becomes real to the acute medical model. For the last year (and then some) that I have been contemplating this groundbreaking notion of healthcare with the dually-eligible Medicare/Medicaid population, the policy side of the model has carved some notion of what this all means.
The reality is that the One Care program is growing very quickly, and plans are hiring all sorts of people who have not been privy to all the advocacy that preceded implementation. So, once more we are experiencing the pain–and possibility–of merging two very different service worlds (acute care meets the day-to-day grind)
This is hard, but it is excellent. Now we have the exciting opportunity to show, rather than just tell, how health and healthcare itself affects the lives of a real people.
In my second assessment, this is exactly the situation that presented itself, as I met with an individual who had previously received some assistance from my agency. She now has returned to us through a referral for a long-term services and support assessment–the next step as this individual seeks the expanded services, and lack of co-pays, that One Care can provide to her.
Now, this consumer has managed quite well on her own throughout her life, but she does have a noticeable disability. I am around it all the time–used to it in my own family, my friends, my work, my world in general. It is strange to me in other parts of my life to step outside of it all and remember that many people really do not spend a lot of time around people in wheelchairs, or who have amputations, who use assistive technology to communicate, who have anxieties, or whose movements or behaviors are somehow… different. I worked for a long time in translation, and found a similar phenomenon when other people remarked on accents. These are cultural differences, more than anything else. But our acceptance of these cultural differences–or even our expectation of them–can vary widely depending on our experiences.
As I have lived in a world of disability for a long time, I have also seen that there is often a sort of entrepreneurial (a.k.a. do-it-yourself) approach to life that comes from a life of living in a world that does not always meet the exact need. If we think about it, we all do all sorts of strange things to make our way in the world–it’s just that the adaptations of people who look, act and move differently are bound to be different, too. And when I say, “different,” I mean, it may look risky, unsafe, and generally inadvisable. Just like half the things I do at home.
Without going into undue detail about my most recent assessment, I want to note that my biggest recommendation to the caring and well-intentioned medical team is this: Back off! I know this sounds incredibly harsh, but sometimes people’s lives are working much better than we think they are from our objective perch. Sometimes a person does not want 24/7 care–and in fact, that round-the-clock home invasion may actually wind up being draining and intrusive, and detrimental to the person receiving it. Maybe bad things can happen. Maybe they can happen, anyway. Maybe the fact that we can put a service in place does not always mean that we should.
And we especially should not, when a person tells us not to.
Now, this gets us back to the crux of all independent living philosophy, which emphasizes consumer control. But this is it, in the home, on the ground, running. Or rolling, anyway.
And I cannot get far in this conversation without acknowledging the very large elephant that sits in every meeting room whenever we in our disability world meet with the Medical Model. That elephant is that the disability world does not trust the medical world. I suspect that the feeling is mutual.
This said, we want to trust, though. Don’t we? Isn’t this why we are here, at this historic point now? I see so many efforts from the medical world to create medical homes, and to reach out to people who have always been seen through a lens of “complex medical needs”–to see why health does not improve, or what is working well. From the viewpoint of a person with a disability, medical care is necessary, if only to prove a need for accessibility. But it is more. We have a real opportunity now to reinvent what healthcare means, not just to people with disabilities, but to all of us. Living life is the real issue, and facilitating our capacity to have a high quality to that life… We do not need intrusion, but listening, and understanding.
It takes time, and change is hard. It is a relief that everyone wants to try.
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?