Archive for the ‘disability’ Category
Resolutions
I resolve. I solve. I wish I could solve the difficulties I see in the lives everywhere.
In particular, I am thinking this eve of 2013 of the many, many people who by some stroke of bad luck are seen as “less worthy” of entitlements, like life.
I am thinking of the non-elder community. Not to discount the very real needs of people over 60, but after four years and 275 visits to consumers, I have to say: age really is just a number. I am saddened enormously that on a policy level, we still remain separate, we aging and disability folks. In many respects, I think our communities are farther apart than ever right now.
I have thought about this over and over as I have worked in my own mind without these sorts of biases. In spite of my efforts to look at people as people first, and categories second, I remain frustrated by the “eligibility” requirements of programs that help people.
A few words of advice:
Do not acquire any other chronic, progressive disease that hits in your 40s or 50s. It will derail your entire life and leave you bankrupt just when your teenage kids and middle-aged spouse need you to be in prime earning power. If you have to get sick like this, wait until you are 60 and can get help more easily.
If you have to have a developmental disability, do your family a favor and score low on your IQ test. Please. Otherwise, you will not qualify for the help you need, and will either exhaust your family or be left to figure out a sometimes cruel and confusing world on your own.
Do not have a mental illness. Just don’t. There is a reason that people who recover from mental illness call themselves survivors, and it has more to do with the “treatment” system than it does with the illness itself.
I know this all sounds quite cynical, and sadly enough, I could go on and on. It is difficult not to be pessimistic as we approach the many changes happening in the disability world right now. Over and over, we see younger people with disabilities all the more marginalized–and perhaps more tragically, fooled into thinking that they are truly included in the unified effort to streamline services and health care. I believed in these efforts, once, and want to think that understanding will still come.
But I see much more often that money changes hands behind closed doors, that those who do not understand the very human right of self-determination are left with the funds to reward those who are compliant, those who do not question, those who play nice…
I resolve to cause more trouble, to question more, to speak up, again. And again.
I resolve to tell these stories, to love more, to convince you to love more, too.
Tragedy
We are all shaken by the tragedy in Newtown, Connecticut. It is unfathomable to most people that anyone in a peaceful society could walk into a school–an elementary school, no less–and start killing.
But are we such a peaceful society? I am troubled enormously as I read the comments on any online news site, for nearly any story, anonymous opinions that I always suspect reveal the true opinions of their writers. Blame: a mental illness is to blame, a divorce is to blame, a gun is to blame. Truth: tragedy from many aspects, resulting in the loss of so many innocent lives. Tragedy to be the family of any of the victims, including the shooter himself.
Liza Long wrote her own response to the shootings in the Blue Review. It is a brave account of what it is to be the mother of a child with mental illness. It is a brave piece, or perhaps a foolish one, as Long will no doubt know years from now, as her son grows, as her name (and his) continue to be attached to the article she wrote.
To allow oneself to be identified as a parent of a child with a mental illness requires a certain faith in the world: faith that others will be understanding and accepting, that they believe in recovery and in the safety that will remain in the community even when people with mental illnesses live within it. Even when we know that they live within it. Events like the shooting in Newtown, Connecticut, only reinforce the notion that we indeed are not safe. The question is why.
The truth is that even within medical communities, mental illness is treated differently, stigmatized, separated. It is not unusual in the hospitals I visit that the staff from the main hospital do not even know the staff from the locked psychiatric units that are beneath the same roof.
Mental illness attracts our attention, and our fear.
Our fear stands in the way of reaching out, too often. We resent the effort it takes to understand, much less to accept.
Our fear leads to cruelty, I fear–the sort of cruelty that then creates even more barriers to treatment. If treatment is hell, after all, a person is best off staying clear of it…
I do not know why Adam Lanza chose to kill 26 innocent people, 20 children. I shudder to imagine the mind that envisions such horror and enacts it. Maybe I never want to understand. I can imagine that understanding was needed perhaps years ago.
I do know about the many families that live in constant fear that a loved one will finally break down completely, that the Psychiatric Emergency Services were wrong when they determined that the loved one is not a threat to him/herself or others, that the 72-hour stay is over, that the family will soon become victims, that the said loved one will wrap a car around a tree or jump off a bridge or become a heroin addict or steal or harm or God forbid kill someone. I do know about the families that I see too often, families who watch as the chaos takes over while the violins play in the background, families who believe they are a guardianship away from effective treatment.. sometimes. Assuming there actually is effective treatment.
I wish I could point to the advances that come to mind: the Rosie D. case in Massachusetts, which resulted in the creation of the Children’s Behavioral Health Initiative. To mental health parity. To increased awareness in general.
But sadly, from my weary place here in Massachusetts, I see still more restrictions, everywhere: CBHI only for MassHealth consumers. Mental health providers woefully low in numbers, and for those direct staff, so often underpaid, so often inexperienced if initially enthusiastic, so often burned out. Inefficient procedures for hospitalization. Near-impossible eligibility for DMH services. Some great champions in mental health, yessir. But too few. And too much harm already done to erase the fear of those with mental illnesses who have sought treatment, and found instead a prison, real or under the guise of healthcare.
I have not even mentioned the weapons. Oh dear God, those weapons. Why? Who needs assault machinery in a suburban neighborhood? Who needs to arm an army from the basement of a home? Why do we make it so easy to buy something that has no other use at all but to kill?
Like most people, I imagine, I felt sick at the thought of the parents, their nightmare. I wish I had answers, quick solutions, a magic wand. But where would I even point it? I know that we cannot build the supports necessary to prevent these sorts of tragedies without a great deal of work–early work, before things happen (call it prevention)–belief, training, money. And will.
I hope we will. I hope we can.
A la recherche…
“Longtemps, je me suis couchée de bonne heure.” But not so much now, except at the end of a week like last week, which, like Proust, seemed to go on without respite, but with some satisfaction I hope in the end.
(The sentence is not mine, but Proust’s, not translated, because the translation gets too complicated. But here goes: “For a long time I went to bed early,” sort of, but it is also the first and only short sentence in the volumes that consumed so much of my younger years. Now, transplanted here into my blog, it is just the beginning of my next rant.)
Satisfaction, I admit, is a stretch, light of the season seeming to go out at just the wrong time as a few fear-mongering Senators came up with excuses around home schooling and parents’ rights and what-not to knock down ratification of the UN Convention on the Rights of Persons With Disabilities. Reading Santorum’s explanation in the Daily Beast, I find myself frustrated that he and the likes of Sarah Palin assume that they get disability and “special needs” children because they are parents. They have been there. And they have. Well. Kind of.
Truth is, I might agree that a parent is best equipped to make decisions about his/her own child, disabled or not. But I am quite sure that Santorum has never had to feel intimidated at an IEP meeting, or has ever had to fight too hard for accommodations, much less for ways to pay for the long list of services that his child might need. His claims that “international bureaucrats” would determine what is in the “best interests” for a child only reminds me of the countless IEP meetings that I personally have attended, for my own children and with other parents. So often have we gone in first wishing for what is “best” and learned that we can ask for what is “appropriate”.
Just to note, reading on in Santorum’s statement, I wonder if he really has any idea what he is talking about when I see things like this:
“How would this new standard play out in a battle between a single mom fighting a stubborn school district for special-education services for her disabled child under the Individuals with Disabilities Education Act? That landmark legislation signed by President George H.W. Bush made it clear that parents—not government officials using a “best interests of the child” standard—are ultimately in charge of their child’s education.”
All right, the single mom, poor single mom fighting the school. Been there. Done that. But what landmark legislation does Santorum mean? IDEA was reauthorized in 2004, signed not by George H.W. Bush, but by his son, George W. Bush. As landmark legislation, it was the 1975 special education act signed by Gerald Ford (yes, renamed I admit from Education of the Handicapped Act (EHA) to Individuals with Disabilities Education Act (IDEA) in 1990 under George H.W.) that was the beginning, truly. Maybe Santorum is confusing this with the ADA, which indeed was the landmark disability legislation under George H. W. Bush..
But I digress noting these sorts of mindless details. In the end, I am ashamed that we could not pull this off. I am glad that so many strong supporters came together to support ratification of CRPD, to promote disability rights worldwide, to support this human rights issue–but sad that they were defeated by a few fools. So sad that these fools use their power to walk backward in the world.
In the meanwhile, my hard-earned sleep came at the end of the week, a week of watching the Duals Demonstration Project as it rolls merrily along to readiness. No comment. Yet. I did have a dream where someone in a room next to a big important meeting was playing “Dueling Banjos” which of course begins rather quietly before all hell breaks loose, and in the dream, people in the meeting were becoming agitated in the process. I am sure this has nothing to do with the tense energy that seems to be building. We move forward.
But suffice it to say that I am planning on my full eight hours of rest as this rolls out.
More anecdotes next week. The stories continue, all compelling, trends continuing of burned-out (or injured/sick caregivers), aging parents of adult children with developmental disabilities (many of these adults now have health care issues of their own that are affected also by their disabilities). More to say, to think about, to wish for. Until next time…
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.
About Never Giving Up…
Never give up.
They are words I have lived by for such a long time, but once in a while I have to stop myself and think about what exactly they mean.
I thought of this just yesterday as a woman described to me the long journey she has endured through a medical procedure that was supposed to be life-altering–and was. The problem is that it was supposed to make her feel better, but instead has left her with a series of side-effects and subsequent infections, illnesses, and depression. A doctor recently told her that he was troubled by the advice she had received. Yes, he would have recommended the surgery, but he would have also told her about the risks. At her advanced age, she may well have decided to maintain her active lifestyle instead, even if it had meant that her life might end quickly and soon. Now, she spends days on the telephone trying to figure out how to cope with her new-found dependence on other people–not something she laments in itself, but an enormous disappointment when she felt that her doctors were promising a longer, healthier life. She told me she felt bullied into treatment.
I returned to work after a week’s vacation–the first long break I had had in several years. Moments of laughter and bliss reminded me of the things that are so vital to life, the things that make our fight for independence and equality all the more poignant.
My work as it is right now is meant to be a series of short-term relationships with people who need a hand in an urgent moment. An accident, an illness, a sudden realization that what had worked before no longer works. If I can save people time and aggravation by connecting them with resources that will not give them another list of places to call, it can be great. No wrong door, we say. And some of us fully believe in the power of that community.
But more often than not, the need comes not from the disability itself, but rather from the maneuvering necessary to gain permission from an insurance company, a human service agency, the government, or a doctor. What matters most, not within the context of a medical system, or a payment structure, or a menu of best practices–but within the context of our own lives?
It troubles me when I meet people who have undergone procedures that may well fall into the standard treatment regime for a given illness, or who have gone through the appropriate channels for.. say, mental health services… all with absolutely no long-term benefit to the person who was trying to remain or become more healthy. In too many situations, I wonder at the very motives behind a surgery or even a prescription, when the consumers themselves are kept ignorant of the whole picture, or ignored if they ask questions.
I do not think it is a situation of giving up when a person decides not to treat a condition, not to undergo the biopsy, not to have the surgery when the treatment itself may well be more traumatic than the condition it is intended to relieve. But too often, I see too many people who realize this only after the fact. “If I had only known…” they tell me, as they then try to maneuver a set of stairs, to obtain life-sustaining durable medical equipment, to see a therapist at a frequency that actually is therapeutic… Permission for the stuff of life, the adaptations that make it possible to live real lives with our various states of humanity–it is not a matter of compliance with a treatment plan, or cooperation with a human service system, or affordability within a payment model.
Never give up, I say, on the vision that the world can be bigger, more flexible, more inclusive.
Thanksgiving
I have taken off the entire week for Thanksgiving, partly to prepare for the turkey, and partly to get some sort of a break before the commotion around Dual-Eligibility starts in earnest.
I am stunned in many ways at the number of referrals that sail into my office now. When we first started the project four years ago, we expected to be inundated with calls from social workers and others who were trying to help people remain or reintegrate back into the community. Imagine… a free service that gives that connection…
But we all know the story: new project, something else to remember, a hassle. Or, if it works, another trusted part of the community, a stepping stone, a colleague. I guess I have gotten there. Many of the people I see know someone else who regularly makes referrals to me. We have a wonderful community now, most of the time.
Still standing in the way are the agencies and entities with their own interests preceding those of the consumers they serve. Growth can destroy an agency if it happens so quickly that the agency loses sight of its core values, or if those core values are skewed to begin with.
Last week was filled with the sort of heartbreak that comes from a completely messed-up system. I am already frustrated enough with the incredibly restrictive nature of Medicaid waivers. As I have stated in the past, why a waiver? Why is the system still filled with such institutional bias?
And why, when a person has a brain injury or a life-ending illness, or a significant physical disability, why oh why do we attach those waivers only to getting out of a nursing home?
To explain, we have some waivers in Massachusetts that pertain only to people who have “served time” in an institution for ninety days. If you have an acquired brain injury, for example, there is hope if you have been incarcerated in a nursing home. Money Follows the Person, a demonstration project for Medicaid recipients, also is based on that same nursing home stay.
So, Olmsteadians and others, where are the Home and Community Based Services to prevent these nursing home stays in the first place?
I need these resources, RIGHT NOW, for the people I see. They keep asking, you know.
I don’t like to tell people that the options are to become impoverished, to divorce the people you love, to play the system and make it work… It just seems immoral. It is.
I am so thankful, thankful for the mere thought that our country has ventured into territory that even questions the barbaric healthcare system that we have. We seem to ignore that people actually do age, get sick, need help, remain human.
I am thankful for my own health as I write this, as transient and wonderful as these moments are.
I am thankful for the freedom to fight for what I believe in, and I believe that healthcare is a human right.
I am also thankful for movies like the one I saw this weekend: The Sessions. Thankful for humanity, love, emotional, for the physical body and its existence on earth. Thankful for creativity, and humor, and once more, thankful for love.
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.
Only Anecdotal 