Archive for the ‘Medicaid’ Category
Back Off
The referrals continue to pour in from One Care for assessments around long-term support services.
This week I want to focus on the very nature of our “long-term support service” world, and what happens on the ground when it becomes real to the acute medical model. For the last year (and then some) that I have been contemplating this groundbreaking notion of healthcare with the dually-eligible Medicare/Medicaid population, the policy side of the model has carved some notion of what this all means.
The reality is that the One Care program is growing very quickly, and plans are hiring all sorts of people who have not been privy to all the advocacy that preceded implementation. So, once more we are experiencing the pain–and possibility–of merging two very different service worlds (acute care meets the day-to-day grind)
This is hard, but it is excellent. Now we have the exciting opportunity to show, rather than just tell, how health and healthcare itself affects the lives of a real people.
In my second assessment, this is exactly the situation that presented itself, as I met with an individual who had previously received some assistance from my agency. She now has returned to us through a referral for a long-term services and support assessment–the next step as this individual seeks the expanded services, and lack of co-pays, that One Care can provide to her.
Now, this consumer has managed quite well on her own throughout her life, but she does have a noticeable disability. I am around it all the time–used to it in my own family, my friends, my work, my world in general. It is strange to me in other parts of my life to step outside of it all and remember that many people really do not spend a lot of time around people in wheelchairs, or who have amputations, who use assistive technology to communicate, who have anxieties, or whose movements or behaviors are somehow… different. I worked for a long time in translation, and found a similar phenomenon when other people remarked on accents. These are cultural differences, more than anything else. But our acceptance of these cultural differences–or even our expectation of them–can vary widely depending on our experiences.
As I have lived in a world of disability for a long time, I have also seen that there is often a sort of entrepreneurial (a.k.a. do-it-yourself) approach to life that comes from a life of living in a world that does not always meet the exact need. If we think about it, we all do all sorts of strange things to make our way in the world–it’s just that the adaptations of people who look, act and move differently are bound to be different, too. And when I say, “different,” I mean, it may look risky, unsafe, and generally inadvisable. Just like half the things I do at home.
Without going into undue detail about my most recent assessment, I want to note that my biggest recommendation to the caring and well-intentioned medical team is this: Back off! I know this sounds incredibly harsh, but sometimes people’s lives are working much better than we think they are from our objective perch. Sometimes a person does not want 24/7 care–and in fact, that round-the-clock home invasion may actually wind up being draining and intrusive, and detrimental to the person receiving it. Maybe bad things can happen. Maybe they can happen, anyway. Maybe the fact that we can put a service in place does not always mean that we should.
And we especially should not, when a person tells us not to.
Now, this gets us back to the crux of all independent living philosophy, which emphasizes consumer control. But this is it, in the home, on the ground, running. Or rolling, anyway.
And I cannot get far in this conversation without acknowledging the very large elephant that sits in every meeting room whenever we in our disability world meet with the Medical Model. That elephant is that the disability world does not trust the medical world. I suspect that the feeling is mutual.
This said, we want to trust, though. Don’t we? Isn’t this why we are here, at this historic point now? I see so many efforts from the medical world to create medical homes, and to reach out to people who have always been seen through a lens of “complex medical needs”–to see why health does not improve, or what is working well. From the viewpoint of a person with a disability, medical care is necessary, if only to prove a need for accessibility. But it is more. We have a real opportunity now to reinvent what healthcare means, not just to people with disabilities, but to all of us. Living life is the real issue, and facilitating our capacity to have a high quality to that life… We do not need intrusion, but listening, and understanding.
It takes time, and change is hard. It is a relief that everyone wants to try.
Experts
As I was driving to a meeting last week for the Dual-Eligible Demonstration Project, a man stood out near the stoplight. He was holding a sign, “I do not drink. I had a stroke and am homeless.” I nearly picked him up and took him to the meeting.
His story–the story reported on his sign–is far from unusual in my world. But it is unusual enough that the experts who treat strokes as an acute medical event still fail to understand the repercussions of health conditions on everything else in life–and likewise fail to understand the effects of everything else in life upon health conditions.
I am not talking about behaviors that are within an individual’s control; I am referring more to the chronic situations that come about first because of that acute medical event, and the difficulty not so much with the illness or accident itself as with the struggles in day-to-day life afterward.
The vision of projects that attempt to coordinate care for dual-eligible Medicare and Medicaid recipients makes a lot of sense, and could allow for the flexibility that can make an enormous in the quality of life of those individuals, and hence, in health outcomes.
But flexibility comes only when there is an understanding of the full picture of a person within the context of life, rather than within the context of a healthcare setting. This is where expertise of assessment comes into play, and where I fear that we are in real danger of getting tripped up by that very definition of expertise.
What is an expert? I see the established healthcare’s system respect for degrees and licenses, and see a structure that is resistant to accepting the expertise of the individual receiving treatment–except, sometimes, within the context of that treatment and the immediate needs around it.
It is not enough to share decision making, or to create a participatory system. More than that, the entire system needs to be flipped where the expertise of lived experience is valued as much as the expertise in the medical field. That clinical expertise is essential, of course. But it does not outweigh the practical aspects of life and the necessity of understanding how life changes all around when an individual’s health changes–and what can be done in all respects to improve the situation. We joke about a school of hard knocks, but the degrees we receive from life are just as valuable as those that we receive from studies within a well-established hierarchical system.
Part of the difficulty comes, too, from the harm that has come from years of medical arrogance. There have always been caring, wonderful medical professionals, and there always will be. In spite of any individuals, though, the power dynamic has allowed an enormous abuse, particular of people with disabilities, whose medical status amounts on a systemic basis to a problem either to cure or to ignore. The harm of this attitude is that mistrust of that system leads to mistrust of individuals–particularly in times of change where the powerful name the game–and where that power base remains so heavily weighted within the existing paradigm. More mistrust leads to defensive tactics, and to cynicism instead of listening, understanding, and working together.
Can the paradigm really shift in favor of the consumer in this new age of healthcare? I don’t know. I see vastly different attitudes about health and medicine in general in many other countries, where a broader range of health seems to be covered. But culturally those attitudes are so enormously different from the way we approach life here in the United States.. and we may not want to pay the taxes necessary to support such systems, even if we could accept that level of overt governmental control over our healthcare. But more flexibility? is it possible? Can we shift our system of medical care to one of health care, of care for people, that works, that truly supports the value of life, as is lived, itself? Time will tell.
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?
Aco Ico
This week, there have been a number of discussions around the penalties hospitals are now receiving for readmitting patients with certain conditions, and Medicare, within thirty days.
As I have stated before, I think this is a misguided practice, throwing gasoline–rather than water–on a fire that is already blazing. But of course, if we ignore the source of the fire to begin with, it looks as though we are all doing something!
Enter the Integrated Care Organizations and Accountable Care Organizations. Note the word care in these titles, for the focus–at least to me–is on the concept of integrated care, and efforts to coordinate services for people with chronic health conditions. This is most likely the key to preventing those readmissions, but of course, coordination is only possible when there is something there to coordinate.
I will spare you readers the rant this week over the lack of long-term care services. I suppose I could go on forever about that, even as I know the lack (and efforts to fill it) are on the radar of many others, as well.
The past week in the trenches was particularly hard. I am still a bit shaken at week’s end at the tragedies that come to my door every single week. Most of my referrals come from the hospitals, where I do not know how employees in the emergency departments and social work areas do not become completely overwhelmed with the sheer injustice of it all–they see it, in all the gruesome detail, daily. And I have the choice to say no, to walk away from situations that I find dangerous or inappropriate, never make that ethical choice to let go of life or to save it. Nonetheless, I remain shocked when I let myself, that this “greatest healthcare system in the world” bankrupts its customers–or our conception of healthcare’s role within government does.
I suppose that makes my views fairly clear. But if not, there is still time for discussion. Tomorrow I will be at the Massachusetts Home Care conference, hearing about ICOs and where we all may be headed in our thoughts around long-term care.
And after that, the Statewide Independent Living Council conference… Much to learn, much to ponder. More next Monday.
Help!
The theme this week is around people who need people. And while this is lovely in an ideal world, I have to say that in this one, these are not the luckiest people in the world.
These are not unfamiliar thoughts on this blog, as I have often discussed the woeful lack of community-based, long-term care services. If we did build a society in which we realized that people needing people is a natural, human instinct, we would not have built communities that value privacy and independence above the community itself. Twisted, wrong interpretations of mottoes we hold in our collective psyche: Live free or die. L’enfer c’est les autres. Our misery comes not from having to tolerate other people, but from our refusal to do so.
So, enter the assisted living. I have visited many an assisted living community, and I must say that they can be lovely. In most, I enter the lobby with the feeling that I have entered a grand hotel, often with happy hour, and brunch–with carving station. Also, mostly, with a homogenous population of a certain age and a certain income bracket… and a certain functionality, too. A little too poor, and it’s the end. A little too incontinent, and it’s time for the nursing home. I struggle with the notion of these restrictions, and also with the notion of yet another sequestering of a population in its own community.
Several years ago, I had the opportunity to participate in a three-weekend advocacy training sponsored by Massachusetts Families Organizing for Change. Tagged onto a fellowship that I had through the Leadership Education in Neurodevelopmental Disabilities (LEND) program, the experience was life-changing, particularly because of the people I met. But also because of the work we did. In one exercise, we sat as friends and family to design the ideal community for people with disabilities, for people we love. The first section involved looking at pictures of various houses. One was a typical colonial, not unlike my own house, with four windows, two up, two down, and a lovely little set of stairs leading to the front door. I saw that my mother would have enormous difficulty visiting, as she has trouble with stairs. So, we went on to discuss this, and so many other issues that come up. For wanderers, it would be such a relief never to have to worry about traffic or strangers, at least within a certain area. And what if we made it easy for service delivery, such as personal care? If people lived close together, it would eliminate transportation time and cost. If there were developmentally appropriate entertainment available, so much for the better. And so on. Before we knew it, we had created… Fernald.
Or something like it. Perhaps nicer, an assisted living sort of community, maybe. McLean Hospital, perhaps. But not the sort of community that has space for all of us, together. We anticipate the dangers of the outside world, and feel an enormous need to protect, to seclude, rather than to figure out ways to include and accept.
And so in our urgency, we reach that certain age–or someone we love does–and the time has come to find a place beyond the world and its children, its chaos and its property taxes, the hectic pace, the long walk to the mailbox in the snow, the laundry, the everyday.
We think of luxury in this way, an escape from the everyday responsibilities, but without this, without meaningful work, existence, can we remain whole and healthy? Or are we simply waiting for death?
In fact, I suppose we could argue that we are always waiting for death, but in reality I doubt that many in this country’s mainstream culture contemplate this notion at all, much less on a regular basis. And so we separate hints of it from ordinary life, this cultural obsession with youth, appearance of health, wealth… I fear that our desire to care, to help the needy, to seek solutions elsewhere, are all ways to separate ourselves, too, from the Other, the near-dead, the sick, the Us in them.
This week, I logged into my database to find an enormous number of consumers still flashing open files at me. I scrolled through the names, trying to remember the stories, and pictured some back porch, a kitchen table, a white dog, the scent of bacon and coffee still lingering from the morning, life, the stories, some waiting still to be told again, and lived, too, all distinct and yet the same in their foothold in this life, the one that we wish to tidy, to sanitize, to hold onto a heartbeat if not a heart.
I sat with three families in two days recently, and listened to the tremendous burdens they face as they attempt to care for their parents who cannot afford the luxury of assisted living. Is a nursing home the only solution? Not cheap, but at least feasible in the twisted funding structure of most state’s Medicaid programs, and their ever-present, post-Olmstead institutional bias. These frail family members no longer fit where they were, as they were, and yes, there are surely ways that they could, that we could fit intergenerational, inter-ability lives together, better. But for most of us, now, in a crisis, building a new world comes not so easily, not so affordably, not so quickly. We wish to include, but it is so much easier to protect.
Waiving the Red Flag
Today was possibly the worst day I have ever experienced in my present job.
In my attempts to keep my ears and eyes open for any sorts of small details that may make life in the real world a possibility for an individual, I usually check my facts before springing forward with the news of a lucky jackpot. I usually research, then check again.. and this time I thought I had. But I obviously had not.
Or more accurately, I was misinformed–by an expert.
I fear–deeply–that the last hopes a man had to keep his wife at home may have dissolved today. In a nursing home, the woman will be able to get funding, but at home? Well, this is what waivers are for, unfortunately. Waivers, because qualifying for Medicaid–the only insurer that pays for long-term care–requires not only a disability, but poverty, as well–hence the waiver. But the waivers vary from state to state, and usually target a specific group of people, often a capped number of them. Rules tend to be stringent: over nine years old with autism? out of luck. Under 60 with need for services to prevent institutionalization? Too bad.
And this is where I really messed up. Even to age restrictions, in certain programs, there are exceptions. If you get SSDI, you have to wait two years for Medicare–unless you have ALS. And in the case of the family I was helping, a diagnosis seemed the best hope for help. But now, we learn that supports will be minimal–and not with the flexibility we had hoped for.
It all makes me think about how much healthcare depends on such studious and constant attention to minute, complex details of not only one bureaucracy, but several of them. It makes me think that when even those of us who are supposed to be knowledgeable of a wide array of programs cannot decipher the possibilities, we are all in trouble.
I am not sure how I am going to break the news to the family tomorrow. I at first thought to head into the conversation with more expert knowledge, with more potential solutions to a very difficult situation. But I think somehow that building this sort of hope right now would be cruel–and only an effort for me to feel better, not an actual, feasible way for a family to stay together with the supports they need at home.
There are days when my stomach knots up in this job: watching a man’s face as he takes in new information from a doctor “No, the dialysis is probably not temporary.” But feeling that there are no loopholes left?
I at first was going to refer to white flags in the title of this piece, but I realized that in spite of this, surrender is not the answer. Letting life happen is one thing: acceptance is often a process that has taken place long before I see people, even in new crisis situations. Flexibility, change, moving on to better things are difficult, but good decisions we can make in the wake of such crises.
But it is more than this. These incidents, ever the more common, I am convinced–especially in middle-aged people with chronic or late-onset disabilities–are warnings to us all. Red flags are up all around us, alerting us to the emergency, the urgent need for Money Follows the Person, and more: to Money Stays With the Person, stays at home. Community First.
Waiver? No. Living at home should not be the waivered condition: skilled nursing facilities should be the exception, the thing that needs a bit of hoop jumping, and maybe a few headaches. I wish that months ago I could have spent my time with this family helping them with living life beyond mere survival. Maybe someday, some coordinator of some sort, somewhere, will have this sort of a job. But until then, the struggle continues.
Decisions, Decisions
After some drama and bated breath, we learned last Thursday that the Supreme Court–the same Supreme Court that has let me down a few times this term (i.e., regarding strip searches and campaign financing)–has upheld the Affordable Care Act… kind of.
And then, of course, the reactions poured in.
I want to be happy about this–and I am surprised that the individual mandate stood up past this test. It is only right that every person in this country should have insurance to cover health. It is just a right, as I see it, that in modern civilization that we should not only pick up trash and fight fires, but also make it possible to seek prevention and treatment around the various facts of our human condition.
But I am still sorry not to see many things here. This should not be an individual mandate, but an individual right. We should not be fooling around with different insurers–I just do not believe that the creativity of market forces will bring us the best solutions around health. An enormous amount of effort now goes into knowing the particular rules of various health plans, people who work in the healthcare field focused not on figuring out the most effective treatment so much as how to maneuver treatment so that it is even possible financially.
I had a discussion this afternoon with a social worker in a hospital around our perceptions of sickness and death. Somewhere along the way we lost touch with the finite nature of our lives, perhaps because the potential to save lives has become so effective, perhaps because we have had the good luck of relative prosperity and longer lives, perhaps because we have so effectively warehoused and silenced those who do not fit the image of wellness that we want to see in ourselves. We simply give up on the question of long-term care (i.e., the dissolution of the CLASS Act), an unattainable financial goal perhaps because we have not spent enough time considering the need for it.
But to go into the homes and the hospitals and the nursing homes and the shelters, it is not such a pretty story: countless foreclosures, bankruptcies, tragedies in the make when people are hit–for whatever reason–by illness or accidents (and this includes even the insured). In spite of our best efforts, people still get sick and become disabled–or perhaps because of our best efforts at times: people who might have died without such effective treatment now live, though the support they need to live their lives may now be much greater.
I want to cheer for the survival of the individual mandate, but I fear that having it without Medicaid expansion–and dare I say, without a single-payer system that includes long-term care, healthcare may improve, but not reform.
And the naysayers–the states that will simply refuse to participate in any efforts at all toward change–are the undoing of a country as told on one front, a country divided under the illusion of liberty, a country that pretends to save lives, but in the process refuses to accept and represent all of its citizens.
Are we smart enough?
Some evenings, I like to go to meetings that take me to the flipside of my day job–a job that focuses on the day-to-day needs of people I see. I like to enter a world where ideas freely flow, where people think about what is possible with technology, with innovation in all spheres.
But then, as I sit and watch, I so often find myself feeling like that “yes, but…” person–a role that makes me very uneasy. You see, I am idealistic, a dreamer–and yet, as I listen to creators, I find myself ever questioning feasibility, accessibility, practicality. And I keep wondering if there is not a better way.
To be more precise, I come from a nuts-and-bolts operation, the non-profit, state-funded program. Things move slowly, often somewhat inefficiently, and I maneuver through systems that operate in archaic and difficult ways.
And beyond the question of public services is the bigger issue of people themselves, people with varying experiences, people whose adaptability varies also, greatly. Not always, but often, it can be difficult to bring in the new, the unfamiliar.
Enter the smartphone.
Yes, the smartphone, the I-Phone, the apps, and the digital world as a whole.
So much potential, and I can see as I hear the ideas how much it would help so many of the people I see.
I think of the woman a few weeks ago who had the meticulous paper diary of blood sugar levels, food she ate, things she had changed, stress level. If only she could have plugged it all in. (and then, also, if only her doctor had time in a 15-minute visit to review the data and make sense of it).
This woman does not have a computer.
I was fascinated this morning as I read the newly-released poll from NPR, Robert Wood Johnson Foundation and Harvard School of Public Health. It discusses the difference in perception about our healthcare system, depending on whether a person has had a chronic illness or disability within the last twelve months. You can read a summary of the findings here. I was not surprised to learn that people who are sick have a worse impression of what is going on. But more on that later.
The data fascinate me in this sort of study. So, while I find myself distressed (though not at all surprised) to learn that nearly a quarter of people who have faced a healthcare crisis have also faced a “very serious” financial crisis as a result, I am astounded to read about telephone use.
Yes, telephones.
In the most basic modern mode of communication, what is a person’s link to the outside world? (and I must add that the individuals polled seem to represent a good cross-section of adult age groups, as well as income brackets). A full 16% of individuals polled said that they do not own a cell phone.
I wish I knew more. I wish I knew about internet access, whether households have computers, or tablets, or smartphones.
At one of these “ideas” meetings that I love, I started talking to a man. Great ideas–I could see how useful they could be. And I told him about what I see everyday–the people with limited computer experience, the people who could really use the ease of technology, but who need for it to be accessible.
I felt that I was talking to another world–he told me that everyone has smartphones.
Another man, at another meeting, told me that I-Pads are great for people with disabilities, very intuitive, and insurers would pay for them, because it only makes financial sense to them if it can save on office visits. On what planet? If the insurer happened to be Medicaid, for example, can you imagine the uproar? Poor people using government funds to get Apple products?
But the the question of accessibility is not only financial, or technical. It is also very real. What about a person with low-vision, or no vision?
And that issue–as I note every time I look at so many things in my job–is not limited to the idea-world after work. A woman, at a day-job-related meeting, explained that an application for her program–which isonly for people with disabilities–is not available in an accessible format, yet.
I have the same feeling every time I pass by a new subdivision, all with lovely front entrances, elevated, stairs heading up to the door.
What are we thinking? If I could impress one thing on any new thinker, it would be to consider the user first and foremost–not an ideal user who thinks and looks like you, but a user who really needs that great idea of yours to work for him, for her.
Consider starting from scratch–where you turn it on, for example. Consider training, equipment, and whether it is usable at all as you are creating it, for whom you are creating it.
On Waivers
This morning, I heard the late news that Katie Beckett had died. She was thirty-four years old, and had evidently been sick. But Katie had a much fuller, and much longer life than she might have if she had remained in the hospital where she was at age three. Medicaid paid for her ventilator use in the hospital. Medicaid refused to pay for ventilator use in the community–although it was possible–until her situation was taken to Ronald Reagan in 1981. Katie, and her mother Julie, changed the lives of so many people by bringing attention to the nonsense of funding people only to stay in institutions when care could be provided at home.
Katie is an inspiration, and this special post today is in her memory.
The fact that Katie Beckett waivers exist is a wonderful thing, but I am ever hopeful as we look to the future of healthcare, that the waiver–the exception–will be to support institutional stays. I am ever hopeful that the default setting will be to provide needed supports at home.
Only Anecdotal 