Posts Tagged ‘disability’
Define “Disability”
I was home sick over the last week, and had a lot of time and fever to lie around pondering philosophical questions…
…like, what is disability?
My mom, whom I am going to keep using as a reference whether I mean to or not, hurt for most of her adult life, and could hardly breathe or walk for the last few years. Yet, she never considered herself to be disabled. I found out how she had to use a towel to turn her key when she started her car, because her hands were so mangled from rheumatoid arthritis. Some call that an accommodation, may even find some better solution. Some don’t bother, and call it getting the job done.
But I thought more of this after kicking back with NPR on the old radio, listening as I like to, to This American Life. And wouldn’t you know it this week.. the program was all about disability.
Instead of listening to me ramble on for too much longer, please go listen. Ira Glass talks with Chana Joffe-Walt of Planet Money, who hopefully will take this stuff to the big time, meaning, beyond the realm of people who already know how discouraging it is to try to live a normal life as a person with a disability. I hope this will bring attention to the impossibility of being a person with less-than-optimum health and less-than-optimum education. Golly, can we do no better than this? I always think…
You see, I hear about places like the poor town portrayed in this episode, and I’ve lived in or near a few of them. People work hard, physically hard, do what they are supposed to do, and eat what they are accustomed to eating. In years past, even in my childhood, there was some wholesome aspect to it all, but as factories closed, as high fructose corn syrup got put into everything, as satellite dishes and video games replaced the outdoor sort of entertainment I remember, hope seems to have evaporated in towns like this. I exaggerate, perhaps. Or not. I stereotype. I apologize. There is always more to the story, and nuances that are missing. But still, it is hard not to look for something, when so many people are in such tough circumstances.
But is this what it means to define oneself as “disabled”? Is this all there is?
Ticket To Work?
Is it impossible in general to escape not only disability, but to escape poverty in general? It takes a really good job–a huge leap in most cases–to be able to survive beyond the world of TANF and SSDI (or SSI).
Work and love.. Freud said that these are the two things we need to be content in life. If we take that ability away, are we truly fulfilling our own Declaration of Independence?
We hold these truths to be self-evident, that all men are created equal, that they are endowed by their creator with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Happiness.
And indeed, are we not creating inequality? Are we denying equality?
Just asking…
Payment Source and Isolation
I once spoke to the owner of a home care agency who told me of his experiences with people new to the long-term area of health care. He told me that time after time, individuals insisted that their particular Medicare plan would pay for home care and personal care services in the home. He encountered others, whose private insurance was the best offered by their company, who held the same conviction and unshakeable faith in their coverage.
Then, soon after, he listened to the yelling, the anger, the incredulous voice at the other end of the phone, faced suddenly with the fact that our regular old insurance does not work so well when our needs switch from acute to chronic. It is a bitter pill to swallow, and a generic, over-the-counter, non-reimbursable one at that.
My colleague’s solution was to let calls go to voice mail: let another agency break that news, and lose the business (shoot the messenger). Often, after hearing the same news from enough sources, people simply realize that they have to pay up if they want long-term help at home… if they can.
If they cannot, they may enter into a new segment of the population: the Medicaid-eligible.
We all have been watching states grapple with their Medicaid plans in recent times, and have heard the normal complaints about the program. Part of the issue, I am sure, is the perception of Medicaid and its relationship with “welfare”, entitlements, free care. It is the insurance of the poor. It is also the insurance of one in four children, of many people with disabilities, and of 70% of nursing home residents. It is the only insurance that pays for any sort of long-term care at home, too, those these options are still too limited and often too restrictive–and Medicaid too hard to navigate–in my humble opinion.
But it is more than this: I wonder how it is that Medicaid is the only insurer to pay for any sort of long-term care. How did we fail to require this of our private insurers, or indeed, of Medicare?
As I was watching last week, as the Dual-Eligible (Medicare-Medicaid) demonstration project rolls out in Massachusetts, I realized that there is an enormous gap in understanding within traditional private insurance about how long-term care works, or even what it really means.
The issue, I believe, is that “long-term care” implies just that: it is care that goes on for a long time–or forever. And in this, it becomes the ordinary, an actual part of a person’s life, and not simply a single medical event, or even a number of them. Where a medical professional may well be able to impart some expertise on medical treatments for specific acute conditions, it is far more difficult for the same doctor to be the expert on a person’s day-to-day needs that come about as the result of a disability or illness–much less, to be the expert on a person’s wishes and preferences.
It matters, because prescribing ineffective doses of the wrong medicine in a person’s life will do harm, within a system whose intention first is to do no harm.
Ineffective doses could mean too few personal care hours. Wrong medicine could mean an ill-fitting wheelchair, or meals on wheels instead of assistance with grocery shopping. On paper, figuring out “appropriate” services seems easy: in reality, it will be the biggest challenge of the demonstration to determine how those dollars are spent. How much flexibility will this system allow? How long will it take for a new system to understand that the wrong equipment may lead to more hospitalizations? or that the agency-based personal care attendant’s refusal to show up at specific hours or to do specific tasks really will affect the long-term health of the individual needing those services?
For the lucky few who will never have to rely on Medicaid, extensive and often lavish options remain. Perhaps the limitations to private insurance and Medicare will still surprise, but the freedom of choice remains for those who can pay for it.
A medical model has always relied on a separation between healthy and sick, between abled and disabled, between normal and abnormal. And a medical model relies on maintaining these notions, on care that keeps the chronically ill, disabled, “abnormal”–and dare I say, poor–population isolated, for a long time–or forever. If private insurance and Medicare treat only the curable, then our payors isolate, as well, by refusing the reality of day-to-day needs inherent to medical conditions that will not be cured. In this isolation, a person becomes defined by a medical condition.
A person is not a medical condition. To isolate in this way is to deny the very humanity of that individual. Is this a responsibility that we as a society are willing to assume?
The Buck Stops Here
Now, I don’t make the rules that exclude people, the entitlements that are available only in specific circumstances, not so much by need as by some other criterium, among a very few, select criteria. I also was never granted a magic wand, let alone fairy dust, to fabricate the accommodations and assistance for people who have the misfortune of getting sick, hurt, or old in this country. It may well be better here than in a lot of places in the world, but most people are bitterly disappointed, especially those who have long believed in our great country (perhaps even fought for it), when they learn how little help there really is, and just how desperate life can really get.
Now, this is not a cheerful message, I realize, but then, this has not been a cheerful sort of week–or month. It seems that something has happened, whether that is the flu, or the continuation of economic stress, or simply an aging population. But people I saw years ago keep returning, sometimes in far worse condition than they were awhile back.
That said, it seems that professionals I know are pretty aware of many of the programs and services that are available. It is great that waivers and services that were once a semi-secret now pop immediately into the minds of discharge planners and social workers and nurses and counselors of all sorts. Once in a while, I can run through the possibilities and tell someone something new–or I can help make the connections once a person transitions from one setting to another. But once–or twice–or three times–in a while, I meet individuals who have my name on a long, long list of “try-here” resources. Sometimes they have been told that I can work magic, find housing, or psychiatric care, or transportation out of the normal area boundaries.
I am no magician. I am no saint. I try, I know my stuff, but I also cannot lie, defer hope to the next person when I know full well that you and your family are in serious trouble if you are 53 years old, have a demanding job and a spouse who has not worked in ten years, two kids in college and a mortgage–and have a stroke.
Truth is, I never want to tell a person how amazingly limited the options really are in this situation, but I do tell. Often.
I do not want to tell a person that even though he has lost his entire life savings and home, he still has too much money to get help. I do not want to tell someone that it is a shame she is only 58, because if she were 60, she could get that help, that waiver, that thing that would change everything. But I do tell. I tell the truth.
We have an enormous responsibility when put in the position of providing assistance to people in crises. We want to help, always, I know. But I wonder, more, if at a certain point, the responsibility does not shift in each among us professionals, from the stage of vainly digging for exceptions to the rule, to pushing harder to challenge the rules–or moreover, the mindset behind the rules.
I look now at the enormous changes that we anticipate with a new age in healthcare, with a new term for our president, with new programs and initiatives–and I hope we can do more than talk about progress. We also face a time of cuts, further reductions in the spending on entitlements. We are getting older, dug into lifestyles that never envisioned a time that we would outgrow them. And in so many ways we have found comfort in the here and now, with utter disregard for the future, or for the here and now that we have so carefully hidden from everyday view.
I want to say that the level of caring is not good now, not fair–but changing. I want to feel that change, want to wake up and see a world where people are not driven to despair by the heartbreak of a nation that discards its sick and injured, and those who are neither sick nor injured, but simply different, who also are constantly fighting for a ramp, for a way in, for inclusion. It is hard to watch the bitter realities day after day, and not believe that our country can do better, can be better. I think of Martin Luther King today, as we all must, and find in his “I Have a Dream” speech these words:
“I have a dream that one day every valley shall be exalted, every hill and mountain shall be made low, the rough places will be made plain, and the crooked places will be made straight…”
We could, you know. But until then, I refuse to pretend that things are better than they are. I hope; I dream, but the buck stops here.
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.
Inspiration
The hospital was busy when I walked in, the familiar professionals all gathered in their huddles as I walked past and found the room number. The son of my first call peeked his head around the curtain when I knocked, and I waited as he discussed his parents’ care with the doctors who were already there. Another family called my office, and a message arrived on my cell phone, running late, child sick, will be at the hospital soon.
Hospitals are hectic places nearly all the time, except in those moments of seemingly infinite waiting: waiting for a change, a death, a birth, a room somewhere else. Working with crisis is difficult, but in a hospital the notion of normal is flipped–because it is the designated separate space we have created within our society to cope with emergencies, with the events that so often are the catalyst for enormous changes within our lives. But within the institutional setting, the “abnormal” is normalized, categorized, redefined to fit within rules and structures imposed perhaps at first to lessen the chaos, but sometimes it seems only to tighten the control. Contained, life’s catastrophes seem nearly manageable.
And indeed, last Friday, the families were facing health crises that will change their lives. In these particular cases, the accidents and illnesses may have been one more thing, the defining moment of acceptance that, yes, this is important, our lives are not what they were. We must do things differently when we leave.
I was thinking about this over the weekend, the notion of life-altering events and our definitions of “disability”.
My agency held its first gala fundraiser on Friday, an event that reminded me of the many people who have fought so hard to redefine “normal”–and more than that, to open the world to people who by some stroke of bad luck find themselves separated from the rest of the world because of a body that in some way does not work the way that most people’s does.
When I was younger, I read Foucault, looking at notions of power and sexuality in literature. In so many ways, analyzing things I was reading seemed so detached from ordinary life, but Foucault’s lessons were vivid reminders of how our organizing of the world has created so many barriers to people who do not fit within the confines of what we deem acceptable. His discussion of the dehumanizing aspects of the medical regard (translated to “gaze”), come to my mind each time I think of the harm that has come of seeing the human body as a separate entity from the human being it contains. The very origins of the independent living movement reject this “medical model” of disability, too, as it sees disability as a problem to be fixed, rather than seeing the whole person and his/her individual needs around life itself.
I am inspired when we have moments to reflect on the courageous moments in history, moments that someone like my own boss Paul Spooner spent chaining himself to inaccessible public buses, or arriving to rescue someone from an institutional setting. I am so glad that my job was created, not to rescue people from nursing homes so much as to keep them from ending up there to begin with.
At the same time, I find myself still frustrated at the barriers that still remain, mostly the financial ones, but the lack of accessible housing and transportation and employment, as well. As I walk into crisis day after day, in the temporary institutions that are hospitals, I keep thinking that there must be a better way to fold these events better into the context of our lives, to expect it, and to adapt to the changes that come, so often. This will never be accomplished without listening to the people who need the services and accommodations, and I will continue to fight for this as long as I need to. It is good to know that so many amazing people have paved the path already.
And in a sad moment this morning, I remembered yet another person who inspired me and helped me numerous times in my work to bridge the gaps in the very face of crisis situations. I have written before about the Neighbor Brigade, a volunteer effort organized town-by-town to help people with the very stuff of daily existence that is so hard in an emergency health situation. Neighbors helped many of the people I saw with things like rides to visit a recovering spouse in a out-of-town short-term rehabilitation hospital, with hot home-cooked meals, with a visit to a pet or a plant. I was always stunned by both the generosity toward people who needed help, but even more by what the opportunity to help out gave to the volunteers themselves. This is the stuff of community, and it was created by a woman named Pam Washek, who herself was diagnosed with cancer at the age of 36. After she recovered, she made it her mission to help others in the situation she had been–many without strong support networks. The last time I talked to Pam, she was on her cell phone on a Saturday afternoon, calling to let me know that she had found a ride for a woman… It was July. Little did I know that she would become sick once more about a month later.
Pam died yesterday.
Pam, I hope you and your family know what a difference your life made to so many others.
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.
Hot Summer Days
This weekend was a lovely one, made all the nicer when I was able to see several friends. One group of us first met years ago, all of us divorced, and with children who have autism. We were talking Saturday evening about the paths we never expected, the challenges, the joys, the well-intentioned remarks from friends and family: “I just don’t know how you do it.” Well, you just do, and you learn. And most of all you accept it, this life. This full life, and the wonderful friends we meet in it.
Remembering the joy in our imperfect lives came at a good time for me, as last week was filled with the intensity I never used to see in summertime. In years past, referrals slowed, and people were more relaxed when I did see them. But this year, as most of the entire country is experiencing droughts and unbearable heatwaves, consumers I see are going through their own extreme situations.
I saw a man with a life-ending (not life-threatening, life-ending) illness. It is one of the rare cases where there is no wait period for Medicare for people on SSDI–and it is a rare situation where SSDI comes quickly, without appeal. In spite of this, he cannot access the medical equipment he desperately needs right now. And why? Because he moved from another state, and has applied and been assured he will get MassHealth Standard, but has been told he cannot have the equipment for sixty to ninety days, at which point, he probably will no longer be able to use it. Oh, and he cannot get a personal care attendant yet, either–that will probably take several weeks when he does have his insurance.
Another person was in a hospital, dying, if he has not died already sometime today. It all came about quite suddenly, and he was in the midst of making plans for his family’s future. It matters a lot in this case, you see: his biggest fear was leaving his adult son, who has mild developmental disabilities (read mild: not qualified for adult services).
Another man, also dying, is due to be discharged from short-term rehabilitation, but his family is exhausted from taking care of him. Their biggest need? a ramp–and sleep. Overnight services can be difficult to get without a substantial amount of money to spend, but not necessarily impossible. The ramp is not such a hard thing to get, but it, too, can be expensive. The man is probably eligible for programs that will help his family pay for what he needs, but paperwork takes time–and time is what he does not have.
All told, nineteen referrals later, I am left somewhat shaky and bereft, I admit. And then, I wonder what could change these sorts of situations. After all, people die. They die everyday, sometimes suddenly, sometimes quite slowly. But the biggest problem in all of this is our absolute refusal to contemplate death, especially when we are healthy. We have enough trouble discussing illnesses and accidents and disability, but death seems nearly imaginable.
It is a funny thing to consider. We have lived for a long time in a world where miracles happen–relative miracles when I think of the stories I heard from older relatives, from neighbors, from older people in rural Vermont when I lived there. Mothers dying in childbirth, their newborns then dying too without a mother’s milk. Pneumonia. Flu. Infections. Death seemed tragic, but not unfamiliar–and yet, even if we can prolong life now, it always ends. Are we just distracted? Have we figured out ways to see only what we want to see in our everyday lives? I wonder.
Morbid obsession is hardly the answer, but I wonder in the three situations I mentioned if the anxiety that the families are now facing would be the same if we were to embrace the finite joy of our lives, the possibility of abrupt changes, if we were to embrace the uncertainty that our lives always contain. The bureaucracy and confusion that these families are facing is very real., and particularly difficult in the face of serious illness–but also a very difficult system to change if the illnesses that precipitate the need for prompt services bring up subjects that we fear so much.
Of course, these families are reacting now with love, with grief, and with the best that they can give. But when a topic becomes impossible to discuss, it becomes isolating, as well. And this is truly frightening. It is the society in which we live that shuns death, that shields us from imperfection, or tries to make it pretty. I wonder if we would find it easier to discuss death if we felt the ugly and beautiful lives of those around us–the sick, the aging, the dying–not with pity, but with the true understanding that they are we.
On Waivers
This morning, I heard the late news that Katie Beckett had died. She was thirty-four years old, and had evidently been sick. But Katie had a much fuller, and much longer life than she might have if she had remained in the hospital where she was at age three. Medicaid paid for her ventilator use in the hospital. Medicaid refused to pay for ventilator use in the community–although it was possible–until her situation was taken to Ronald Reagan in 1981. Katie, and her mother Julie, changed the lives of so many people by bringing attention to the nonsense of funding people only to stay in institutions when care could be provided at home.
Katie is an inspiration, and this special post today is in her memory.
The fact that Katie Beckett waivers exist is a wonderful thing, but I am ever hopeful as we look to the future of healthcare, that the waiver–the exception–will be to support institutional stays. I am ever hopeful that the default setting will be to provide needed supports at home.
Only Anecdotal 