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?
My Inspiration
My mom died around midnight Saturday night.
She had been struggling for many years with a number of chronic conditions, all beginning with a diagnosis of rheumatoid arthritis in her forties. Over time, things became harder and harder, her lungs and heart weaker. She rallied forth, every time. She was strong, invincible I thought. But the cold she caught in a short-term rehabilitation unit was finally too much. An infection developed, and within two days, her kidneys failed. There were no heroic efforts to intubate or dialyze–my mom knew a long time ago that she never wanted those things. She talked to us for as long as she could, until she faded, and never awoke. I will always laugh as I think that she said she was sorry she would miss Downton Abbey this week.
My mom died an ideal death. The one blessing of losing my dad in 1985 was that it gave us plenty of time as a family to discuss death, and not to fear it. My dad had lung cancer, and was sentenced to certain death over three months before he actually died. In that time, we as a family spent our time in an endless cycle of work, dinner, hospital, home. Repeat. Several panics before the end–this is it–he pulled through, only to writhe in pain. I remember even as a twenty year old thinking that the fears of morphine addiction seemed ill-placed, as did the very arrogance that surgery on a dying man is a good idea. As I recall, we were never given a choice of what should happen, and if we were, we were probably still seduced by the notion of medical miracles. The last words I remember hearing from my dad are “It’s all right. It will be over soon.” He must have seen my frightened face, my anguish at the intensity of his suffering. I avoided all doctors and hospitals as much as possible–for years–until my own children were born.
I have spent an enormous amount of time in hospitals since then, in all sorts of situations. I have to say, I am most often impressed by the care and knowledge I see, and my mom had remarkably good care at the Cardiac Intensive Care Unit of St. Luke’s Hospital in Kansas City.
If the acute care of her final days was beyond excellent, the long-term care options preceding that time were filled with anxiety and frustration. Too little money to afford assisted living or private home care, she pieced things together, accepted mediocre services until they became more cumbersome to allow than to refuse. (The one exception was the man she found to drive her on errands. His name is Diego, and he could not have been kinder.) My mom worried, a lot, and she became sicker.
I was frustrated, because I am supposed to know my way around this. But then again, looking at the fantastic facilities where my mom died, considering the costs of those heroic efforts that many people do try, thinking of the enormous blessing that my mom’s Medicare and supplemental insurance will pay for it all… I imagine we can create long-term care services of similar quality. As we see the shift in the years to come from the sexy world of specialties and surgeries to primary care and prevention, we will feel the difference in our lives, all of our lives. We have to.
Dream On!
I was meeting on Sunday with a visionary, a person who had a bigger idea of what would make a vibrant, living, artistic community, and he was describing the various challenges he has found with the people who spend so much time rooted in the “reality” of things as they are right now.
It’s a frustrating thing to have a great idea of what would make things truly great, only to be reminded, constantly, of all the good things that we can do right now. It feels sort of like having a bake sale to build a new school: laudable, perhaps, but a great effort that entirely misses the potential of those precious moments, and dreams small.
I think this often, as I think about tests and pilots and demonstrations that have a great vision in the beginning to solve a problem. The ones I have most encountered in my recent career world have something to do with access to services, and facility of navigating systems that can ideally fund the most basic needs, level the playing field so to speak for people who need wheels to get around, or an extra set of hands to pick things up.
There always seemed to be some prevailing notion that everyone can have adequate assistance, if only the system were simplified into one easy method–or no wrong method, at any rate.
I sometimes think back over the last few years, and wonder if the numerous individuals who benefited from that ease of access to services are now living better lives because of it.
I ask this now, as we contemplate the future of healthcare. I ask it, because I see the future efforts at developing new infrastructure, building new programs, and I think about the last several posts, in which I lamented the utter lack of essential services for various age and disability groups. All the knowledge and navigational assistance in the world is only helpful in so far as it stops an endless maze of pointlessness. And perhaps the visible hole of need brings along enough anger in its wake that more of us feel motivated to speak up.
We need a bigger vision. But it really is more than that, as I believe that the vision is clear enough and common enough to many people who have worked in or personally encountered the health and human service system. Dreaming of some world where we can respond quickly and efficiently to the obvious needs for housing, transportation, and personal care is not a waste in itself. Only, we do not need more focus groups or advisory committees; we need to start building. Action is bold, and it is unlikely. But it is absolutely essential to stop wasting time and money on securing our comfort zone. The small efforts may feel good in the moment, but really, when they keep us from focusing on the big picture, all they really do is waste our energy, and make us feel good about it.
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.
Simplicity
Today I sat next to a sick man. He told me about the tomatoes he grew this summer. Tomatoes so big and sweet, juice dripping down… he had devised a cage to keep the squirrels away, and it worked. His partner chatted with a nurse about working, as a girl, on a farm, the meticulous methods that the older girls used because they were paid by the quantity of work they produced.. the fun, the hard, hard work. They both spoke of their home, the expense of having someone help him there, still cheaper by far than the nursing home, but not so insurable.
Most people do not ask me to help them find the best or the fanciest things. They want the simple things, really, the things that easily fold into their life as they have come to enjoy it. Staying up late, morning crossword puzzle, and coffee. The TV turned on just for the noise, or not. The birds outside the window, feeder filled. An open window. Grass. Beloved pets at our feet, on the bed, spoiled rotten.
A long time ago, I had been talking to a woman at her home, and called to check in. Her husband told me that she had been in the hospital, and was now at a nursing home nearby for short-term rehabilitation.
I went to see her. On the bed of the room she was staying in, I saw only a suitcase and a cane, but not the woman. I looked, but the room was dark, too. Walking back to the nurse’s station, I saw her small figure walking slowly down the hall. She grabbed my arm, and walked with me to the room, and shut the door.
“Julie,” she said, “I just went upstairs! I just told the nurses that I am going home!”
She had just been exploring, as she was keen to do, and had found the long-term portion of the facility–and talked to people who said they had been there for more than a year. She said she did not want to become one of them.
A few weeks later, I called her again. She told me that she had had a wonderful Sunday recently, cooking and laughing with her husband. She said that in all, she spent many days in bed, sometimes had a hard time. She had help, just about enough of it.
And for those Sundays, the scent of her native dishes, the sun streaming into the windows, plates on a table, being home mattered more than anything. Simple pleasures.
Wishin’ and Hopin’
and thinking and praying…
Though it’s early in the year, we seem off to a tough start. The obituaries (yes, I read them) are a mile long, daily, and the hospitals have been swamped. The calls are more urgent, despite the increased awareness I have noticed about programs that used to be “the great secret” or otherwise underutilized.
The damning thing about knowing all the options is that it makes the situations with no options all the more visible. It gets harder and harder to be the bearer of bad news, but it is so often the situation we face now. I mentioned a few of these groups in my last post, but they keep returning, constantly, similar situations, different stories. It seems obvious that change is needed, but it cannot come fast enough.
It seems so obvious that we need houses we can access, neighborhoods, transportation, and help. And yet, as we see solutions so easily adaptable at times, it seems far from everyday thinking. Stairs? No problem. More highways instead of public transportation? No problem. It seems as obvious as global warming–we are burning, like Rome. Yeah, I know. It sounds like fool talk.
Perhaps it is the thought of winter, here with us for a few more month, but I do not want to wait, to watch more people in despair. I want to skip to the part where we feel productive, where the change seems to be around us, people talking. The number of people who are truly in trouble, suffering, seems to be growing. The danger is that we are not prepared. The advantage is that it will be impossible as the numbers grow for this problem to remain invisible, ignored.
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.
Only Anecdotal 