Only Anecdotal

No numbers, just stories

Archive for July 2012

Waiving the Red Flag

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Today was possibly the worst day I have ever experienced in my present job.

In my attempts to keep my ears and eyes open for any sorts of small details that may make life in the real world a possibility for an individual, I usually check my facts before springing forward with the news of a lucky jackpot. I usually research, then check again.. and this time I thought I had. But I obviously had not.

Or more accurately, I was misinformed–by an expert.

I fear–deeply–that the last hopes a man had to keep his wife at home may have dissolved today. In a nursing home, the woman will be able to get funding, but at home? Well, this is what waivers are for, unfortunately. Waivers, because qualifying for Medicaid–the only insurer that pays for long-term care–requires not only a disability, but poverty, as well–hence the waiver. But the waivers vary from state to state, and usually target a specific group of people, often a capped number of them. Rules tend to be stringent: over nine years old with autism? out of luck. Under 60 with need for services to prevent institutionalization? Too bad.

And this is where I really messed up. Even to age restrictions, in certain programs, there are exceptions. If you get SSDI, you have to wait two years for Medicare–unless you have ALS. And in the case of the family I was helping, a diagnosis seemed the best hope for help. But now, we learn that supports will be minimal–and not with the flexibility we had hoped for.

It all makes me think about how much healthcare depends on such studious and constant attention to minute, complex details of not only one bureaucracy, but several of them. It makes me think that when even those of us who are supposed to be knowledgeable of a wide array of programs cannot decipher the possibilities, we are all in trouble.

I am not sure how I am going to break the news to the family tomorrow. I at first thought to head into the conversation with more expert knowledge, with more potential solutions to a very difficult situation. But I think somehow that building this sort of hope right now would be cruel–and only an effort for me to feel better, not an actual, feasible way for a family to stay together with the supports they need at home.

There are days when my stomach knots up in this job: watching a man’s face as he takes in new information from a doctor “No, the dialysis is probably not temporary.” But feeling that there are no loopholes left?

I at first was going to refer to white flags in the title of this piece, but I realized that in spite of this, surrender is not the answer. Letting life happen is one thing: acceptance is often a process that has taken place long before I see people, even in new crisis situations. Flexibility, change, moving on to better things are difficult, but good decisions we can make in the wake of such crises.

But it is more than this. These incidents, ever the more common, I am convinced–especially in middle-aged people with chronic or late-onset disabilities–are warnings to us all. Red flags are up all around us, alerting us to the emergency, the urgent need for Money Follows the Person, and more: to Money Stays With the Person, stays at home. Community First.

Waiver? No. Living at home should not be the waivered condition: skilled nursing facilities should be the exception, the thing that needs a bit of hoop jumping, and maybe a few headaches. I wish that months ago I could have spent my time with this family helping them with living life beyond mere survival. Maybe someday, some coordinator of some sort, somewhere, will have this sort of a job. But until then, the struggle continues.


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30 Jul 2012 at 11:37pm

Hot Summer Days

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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.

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23 Jul 2012 at 9:05pm

French Literature

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When asked about my background, I can note the fellowship in disability policy, or the work toward my master’s in public administration, the grant writing, and the years of personal and professional experience in working with the bureaucracy that surrounds special education and health care. Or I can mention that my intended profession was to write, and to study, teach, and research literature. Yes, I did that, and at times it seems like a lifetime away. I finished my master’s in French literature and then moved to comparative literature for my doctorate. I wrote, and was moving up in the literary world, and things were going quite well until… Well, this is the story of so many people who either become sick or disabled themselves, or have family members who do. Truth be told, it is a lifetime away. In my case, it was my child who needed me more than any scholarly attempts at deciphering Borges, so whether I knew it or not, my course was set from that time on. Juggling only works for a while when the situation is serious, when appointments and anxiety set a whole new trajectory for our lives.

In my case, we were lucky in the early days, with enough financial resources to support my not working, the medical costs, the transportation costs, the human costs of fighting to get what my child needed. But things could only continue this way for a while. Add a child, or two, or three, add a diagnosis, and a divorce, and the financial consequences of the time spent fighting rather than working, I know the challenges, the loss of dignity waiting in a welfare line (even if they no longer call it that). I know what it feels like to be so close to the edge. And I also know that I am incredibly lucky not to have fallen off.

The last week seemed an exercise in remembering the lessons I learned myself, as I met with family after family on the brink. One man told me that he had been crying himself to sleep in the hospital every night. His own disability had been difficult, but when his wife was hurt and unable to work, the challenges grew: the battles with her employer, the application to Social Security, the continued expenses–previously sustainable… And a way of life that the family had worked hard to achieve was quickly disappearing.

This was only one family, in the beginning stages of such devastation, but I see them all the time. I wanted to tell the man that he is not alone, but I am not sure that the news of so many people being swallowed by financial ruin in the face of disability is a reassurance. I think of Victor Hugo, Jean Valjean appearing in my referrals not occasionally, but often. I have met people who confess to me that they have stolen food, or money to buy medication for a child. Some have gone to jail for it, and find themselves living in hotel rooms, seeking endlessly for help. But a simple background check usually makes both housing and employment nearly impossible to find. When I see situations like this, day after day after bleeding day, I can only respond to the question about my relevant education to say that French literature was entirely appropriate to prepare for this.

Truth is, I wish I had answers for the families I see. Sometimes I can find some resource that helps people, or can fight a little harder, know the person to call. And most of the time, the strength of human spirit amazes me. I can continue to build a community and to learn, but most of all, it is the human element in all of us, the stories, that have the most chance of affecting policy and change. I hope so.

Written by Only Anecdotal

16 Jul 2012 at 7:18am


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Later this week, I have to go to a meeting to discuss a training module created on the topic of “consumer control”. Now, for those of us in the disability world, these words have powerful meaning: a tenet of independent living, of disability rights, of civil rights across the board, when you get right down to it. And yet, I am anticipating more attempts once more to water down the rhetoric, to emphasize the progress that has been made in “person-centered” service delivery, in “consumer-directed” service delivery, in shared decision making. And while these attempts to include the consumer/patient/client in the discussion about care and services are better than total exclusion of the person, they are still missing the point.

In my work, the number one complaint I hear from people when they refuse services that are available to them is that the services were somehow intrusive, inappropriate or judgmental. I hear that they are not what the person wanted or perhaps even needed, but that someone–a professional of some sort–convinced a person to accept help, or care–or it was just done for (to) them.

One person determining “what is best” for another person is not an exercise of equality in the least. In fact, as the person–or family in the case of a child–is seen as the receiver of something, rather than as the subject of a service-related relationship, the relationship is skewed from the start. Is it any wonder that people do not follow service plans when they are not the ones who are in charge of them?

Loss of control is perhaps the most frightening part about the aging process, and also within the world of illness and disability, if for different reasons. We seem to have a desire as a society to protect those who do not fit the stereotype of what we deem fit and strong. A number alone–a number of years–can determine whether a person is clumsy, or a fall risk. It can determine whether someone is categorically entitled to certain services, like meals on wheels. It seems to invite sudden permission to resort to diminutives when addressing a person whose name we do not know. And for people with disabilities, if the notion does not invite pity, it may well invite fear, as we avoid the issue of difference entirely simply by not considering access of all sorts, by not even entertaining the possibility of a wheelchair, or a seizure, or an inability to speak.

But we as professionals may well envision our perfect worlds for people. We may know the most effective treatments, and the best living conditions for a certain set of circumstances. And actually, we may have some great ideas based on the experience we have and the things we have seen. But always, always, our consumers are the best teachers we have. It is necessary not only to listen, but to relinquish the reins to them. We work not with the people we serve, but for them. Really. It matters that much. The medical care we give, the services we set up, everything we do should start and end with the same sort of relationship I would expect if I walked into an Apple store, and told the worker what I need my I-Pad to do for me. And we should deliver–and if we cannot, we should go back and figure out how to respond to the need we were unable to fulfill.

I talk to a lot of people who are very good at creating their own solutions that really do meet their needs. A man I met a few weeks ago was in a quandary when he needed a doctor’s signature to complete a transportation form. He had stopped seeing the doctor, because he had pooh-poohed the man’s choice of a treatment that was not what the doctor had recommended–even though that treatment had been effective in the end. A woman sat in a nursing home for months, complaining endlessly to whomever would listen, that she did not want to be there, that she wanted to go home. And yet, over and over she had been told that she was too weak, that she could not manage on her own, that she was not safe. This sort of prison must be the ultimate loss of control in our society. (Now she is home, safe.)

I had a dream not so long ago that prescriptions for medicationss were a thing of the past. All medicines were legal, and available, and we just took them if we thought we needed them, consulted with professionals if we thought we needed to. I know it sounds medieval, and reckless to some, but I wonder as the world becomes wilder, as we self-publish and grow, if we cannot reinvent the sort of control we have as individuals to determine our own needs, if we cannot let go of our own (perhaps unconscious) desire to “help” others (which is another word for controlling them), if we cannot see fit to trust–truly–in the ability of those whose abilities are different from our own to make decisions about their own lives.

Decisions, Decisions

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After some drama and bated breath, we learned last Thursday that the Supreme Court–the same Supreme Court that has let me down a few times this term (i.e., regarding strip searches and campaign financing)–has upheld the Affordable Care Act… kind of.

And then, of course, the reactions poured in.

I want to be happy about this–and I am surprised that the individual mandate stood up past this test. It is only right that every person in this country should have insurance to cover health. It is just a right, as I see it, that in modern civilization that we should not only pick up trash and fight fires, but also make it possible to seek prevention and treatment around the various facts of our human condition.

But I am still sorry not to see many things here. This should not be an individual mandate, but an individual right. We should not be fooling around with different insurers–I just do not believe that the creativity of market forces will bring us the best solutions around health. An enormous amount of effort now goes into knowing the particular rules of various health plans, people who work in the healthcare field focused not on figuring out the most effective treatment so much as how to maneuver treatment so that it is even possible financially.

I had a discussion this afternoon with a social worker in a hospital around our perceptions of sickness and death. Somewhere along the way we lost touch with the finite nature of our lives, perhaps because the potential to save lives has become so effective, perhaps because we have had the good luck of relative prosperity and longer lives, perhaps because we have so effectively warehoused and silenced those who do not fit the image of wellness that we want to see in ourselves. We simply give up on the question of long-term care (i.e., the dissolution of the CLASS Act), an unattainable financial goal perhaps because we have not spent enough time considering the need for it.

But to go into the homes and the hospitals and the nursing homes and the shelters, it is not such a pretty story: countless foreclosures, bankruptcies, tragedies in the make when people are hit–for whatever reason–by illness or accidents (and this includes even the insured). In spite of our best efforts, people still get sick and become disabled–or perhaps because of our best efforts at times: people who might have died without such effective treatment now live, though the support they need to live their lives may now be much greater.

I want to cheer for the survival of the individual mandate, but I fear that having it without Medicaid expansion–and dare I say, without a single-payer system that includes long-term care, healthcare may improve, but not reform.

And the naysayers–the states that will simply refuse to participate in any efforts at all toward change–are the undoing of a country as told on one front, a country divided under the illusion of liberty, a country that pretends to save lives, but in the process refuses to accept and represent all of its citizens.

Written by Only Anecdotal

2 Jul 2012 at 9:31pm