Archive for the ‘community’ Category
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.
He Wants the Real American
The election is, at last, over.
I am relatively happy with the way things turned, out. Relieved may be a better word. But not everyone feels this way, a fact that came crashing down on my idealistic soul in a bar on election night.
Now, you would think that event planners would have better sense than to schedule a singles mixer as we awaited the turnout from such hotly contested races. But schedule they did, and I signed up. I thought it would be interesting–and it was.
For one thing, it was an icebreaker for the nervous mingler to look up at the screens and comment as states turned either red or blue. That was a somewhat entertaining, but as a person with strong feelings about the issues brought up in the campaigns, I could not help but voice my overwhelming concern during the last year (several years, actually) about access to healthcare.
A man tried to convince me that he was justified in his stance against universal coverage, because his company is looking at penalties of over $5 million because the company does not offer health insurance to all of its employees. I was shocked: shocked that rather than offer insurance, the company had decided to swallow the penalties. Shocked also at his reasoning. He told me that the people have jobs, and fewer people would be employed if the penalties ate that deeply into the profit margin.
Problem is, I see people die from lack of access to timely and affordable healthcare. I see the stress and the ultimate, unwilling non-compliance to medical plans because people cannot afford medications or outpatient visits. The man claimed, as Romney did, that people go to emergency departments for care; they do not go without. I told him that if he could walk one day in my shoes, see the people I see, he would change his mind.
He was pale when I told him good evening, and I was not sure in the end if he was just angry, or if he really considered what I had said.
I walked to the far end of the bar, where a man, and another man who turned out to be the cousin, introduced themselves. The first man had not voted. The second had, but up to that moment had refused to share with his family which way he had voted.
What he said upset me more than any other thing I have heard this entire election cycle. It upset me, perhaps, because it was real. It was tangible. And they were his deepest feelings, he said.
“I voted for the real American,” he said.
I am terrible at disguising my feelings. And true to this, the first man looked at me, and said only, “Uh oh.”
Truth is, I was sure I had misheard the cousin. I was sure that I had misunderstood. I was sure that in downtown Boston, in 2012, I could not be hearing the racism I had heard from a few people when I was a kid in Missouri. I was sure that despite the hate and fear that comes into our homes via Fox News and much of talk radio, no one could utter such a sentiment to a stranger, in a social setting.
But deep down, as we have been seeing with sentiments against women’s rights, I know that hatred has a voice, and therefore, a space. Power.
It shook me, glad as I was the next morning to find a new senator in Elizabeth Warren, and the same president with Barack Obama. The people spoke, and most of them do want a real American–one of the real Americans… the one who best represents the nation that we are right now.
No luck for me in the singles mixer. I had planned to stay for only an hour, and I did. I went home to spend the remaining hours with my kids, albeit it with a new realization of the sincere need we have in our land to unite, to reach across, to love.
And in this, I also want to thank the veterans who have served our country. I meet many of them, many who are getting older now, many who have stories they never told, others who have stories they never stopped telling.
In an ideal world, I wish we could all serve, if not in the military, in a volunteer capacity, serving the needs of our people throughout the country, uniting us all in earnest, as we see, up close, who we all really are.
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.
Take a Village…
Who knew that a hairdresser would be one of the top wishes of so many home-bound people I see. A vanity, some might say, but looking good can make an enormous difference in the way a person feels.
Not too long ago, I spent seven years in a small village in Vermont. It was the setting for Hitchcock’s “The Trouble With Harry”, but it could be the setting for nearly any imagined perfect New England picture storybook, the white houses in the hills (most often covered in snow), dairy farms dotting the landscape, along with the sugar houses. It was real. I lived in such a white house, with a dairy farm across the street.
Now, the thing I had not thought about much before I moved there is that dairy farmers work harder than anyone I have ever known. It is grueling, incessant work in an often-brutal climate, and not for much glory–or sustainable income. As a result, many dairy farmers run some other business on the side. The dairy farm across the street from us had a beauty shop, called The Beauty Hut, and when it was open, Cindy styled hair and entertained the local ladies with the latest gossip. She also rented videotapes.
Several days a week, Cindy moved her operation down the street to the rest home across from the Presbyterian church and preschool. Several of Cindy’s customers lived in the rest home, and were not able to get to her shop ver easily. Cindy ended up working in the rest home full-time later on, when the dairy compact expired, but that’s another story.
We knew the rest home well, as many of the people who lived there went across the only painted crosswalk in the village to go to Sunday church. Several years before we arrived in Vermont, the church had raised a lot of money to put an elevator in so that people who could not use the stairs could still make it downstairs for the Sunday lunch, and up the short distance to the sanctuary.
It was a pity that the schools were not quite as forward thinking in their accessibility. Many a grandparent missed the Academy graduation, because there was nowhere to park. Once, when I spoke with the village principal about this, he told me to park in the grass, next to the fire lane. After I had written a letter, called the ADA office in Boston, complained for several months, the custodian went out to the front of the elementary school and put up a sign. It was not the way it was supposed to be, but it was close, and it helped a lot of people besides my son. Unfortunately, a few months after we left Vermont, my neighbor Cindy went to the school and took a few pictures for me: the signs were gone. Such was the feeling in the schools: good riddance.
We left Vermont because it was so hard to put together services for my son. A man with developmental disabilities who used to run errands for the town hall had left, as well. He was included in the life of the village, yes, but he was unable to get all the help his family needed to keep him at home. Another woman with autism lived still with her aging parents. Her sister lived with her husband and daughter next door. The woman’s mom rode with me for half the year to Montpelier, where we went through the Rural Autism Project. She told me of her fears, aging, her promise to her younger daughter that she would never have to be the one to care for her sister. But the options were limited otherwise. It was one thing the Rural Autism Project could not answer, and she left the courses midway.
The preschool was the best year for my son, with a lovely teacher who just understood what to do, and two very good aides for my one child. My son thrived, and walked every Friday with the other kids across the street to the rest home. The residents all knew us, and we visited often, talked to people as my kids admired the fish tanks in the front porch.
Sometimes a rest home resident got sick and had to move to the next village down. It had a nursing home, set back behind the general store. For a few months, we had a French conversation group in the memory unit. Many of the people lit up when they heard French, and could say things they never said anymore in English–or so we heard. Some of our students had spoken it as children. One woman used to teach it herself. Cindy’s mother-in-law lives there now, just down the road from where she lived all her life.
I have been thinking about this life now, as the leaves this year are surely crimson and gold with the weather we have had. I had never imagined myself living in such a rural setting. It was hard, in many ways–everything was a much bigger effort, from shopping for groceries to getting the wood stove going in the morning. I saw an older population, accepted and folded into the small village in their homes, in the rest home, and often in the nursing home if necessary. The services were not like here–it was more a matter of people watching out for one another. It may be the only way to survive in such a small community–you have to be accepted in the community.
I remember waiting for Ernie at the general store one day as he filled a shopping bag with the items on a neighbor’s list–she can’t get out just now, he told me. Someone was going to take the bag up to her house. I thought of how we can adapt to help people more, and I think that even in our big urban and suburban communities, people often do help out if they understand what they can do, and how.
But that was key. I do not want to paint too rosy a picture of our lives in Vermont; we left because despite the generosity of state funding, we could never find the appropriate help for my son. Problem was, few seemed to understand that people with disabilities do not have to be limited in what they are able to do. They can be taught, and challenged to do more, if differently–but that requires some degree of expertise, and a greater degree of hope.
The rest of the world moves at a different pace than Vermont, and perhaps at times with less willingness to embrace the idea of progress. Sometimes people were surprised that my son even went to school; others resented the spike in the town budget for my son’s education. Our house was egged once. The fights with schools there were just as difficult as they are here, if in different ways. It was rare to battle with arrogance, but not so rare to battle with inexperience. There were just very few kids like mine, and few opportunities, then, for professionals who could live there. Too often, my son became the school special mascot more than just another student–a sentiment of pity that I resented enormously, although I realized at last that it was the best they knew to do.
And so, I find myself thinking of that frustration, along with the loving acceptance of disability that we found from so many people. I think of the messages I heard so often in that bucolic setting, respecting the elders of the community. I remember the veterans marching to the cemetery on the common every Memorial Day. I remember the ladies and their hairdos, and Cindy. Everyone knew that the older people had earned their time, that we should take care of them, and as I think back, they did understand the most basic thing about people: that they are people, and should not be forgotten or left out.
_____________
As I think of villages, I visited the new Edward M. Kennedy Health Center in Framingham last week, during their opening ceremonies. What a lovely space, such an amazing feeling to walk into an environment filled with optimism and hope. I have seen many of the health center’s patients in my own work, often meeting them in the cramped spaces where these talented professionals managed to do great things for years. My friends Claudia and Marcia, social workers who call me once in a while, now have room and privacy for the valuable work they have always done. I can only imagine where things can go from here… (and will write more about this in the next few weeks).
Another noteworthy item from the news: Eric Coleman, doctor who created the Care Transitions programs, has won a MacArthur Foundation “genius” award. Coincidentally (?), this was announced on the same day that Medicare began to penalize hospitals for readmitting certain patients within thirty days of their last hospital discharge. Dr. Coleman’s work has been much lauded as the programs spread… but are they enough? And on this, I will write more in the next weeks, as well.
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.
Only Anecdotal 