Only Anecdotal

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Back Off

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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.

Written by Only Anecdotal

3 Feb 2014 at 7:32pm

Imagine

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In the time since I last wrote here, the world has changed.

We have embarked on so many new adventures in the agency where I work, in the state, in the country… It is all a bit baffling to see the ideas so long expressed coming to fruition now. I find myself once in awhile holding onto my cynicism like an ugly old jacket that served its purpose well enough to protect me back in the day, even if it never quite fit. Same with our healthcare. Hard to believe we might be able to order something tailor-made, but right now I am in the ordering business!

Last week I went out to do my first long-term services and supports (LTSS) assessment for the One Care program–Massachusetts’ demonstration healthcare program for people ages 21 to 64 who are dually eligible for Medicare and MassHealth (Massachusetts’ Medicaid program). Since people in this age group only receive Medicare after they have been on SSDI (Social Security Disability Insurance) for two years*, we know that their disabilities are significant and long-term. MassHealth is triggered also by low income and/or disability. Some may buy into the MassHealth system, but most would only do so to maintain some sort of long-term benefit, such as personal care attendants. Either way, we know that dual-eligible individuals often struggle with day-to-day life. While it may be an illness or disability that has made daily activities difficult, it is also true that for many people, this lack of support in the day-to-day needs becomes a downward spiral into isolation and worse health.

The unmet need for long-term services is hellishly familiar to those of us who have worked or lived with disability for any length of time. I personally have clamored for years about what a great world it would be if we could embrace care coordination, medical home, consumer control, participatory healthcare, collaborative decision-making… I have had my mantras, my rants, my moments of frustration.

And now.. I have had the experience of sitting in a consumer’s living room, asking the individual what he needed in his daily life. He told me, told me what he does, what is hard, and I came up with a few creative suggestions for things that may make these things possible.. or easier. I have absolutely no idea whether a healthcare plan is going to recognize the tremendous benefit of, say, a gym membership and transportation to get there. Or support for companion pets. Or even homecare–not so easy to get that sort of help before a certain age. But I am writing it down, recommending it strongly, and ready to explain why.

This first assessment was difficult for me, mainly because I am so much in the habit of thinking two steps ahead, to what is available instead of to what is really needed. I find myself frustrated at my own realization of how much I had adapted to this system of thinking–a system that I have complained about for so long. I have spent so many years hitting my head on the wall trying everything I can possibly think of to get someone desperately needed help (and much of this help being for my own children) that I find it incredibly hard to believe that there is a program where I can write down, “Julie X. needs Y, because it will help her health in ABC way…”, and Y will be granted (I believe the preferred term is authorized). I have joked for a long time that my requisition for a magic wand is on hold, but by golly, I am beginning to wonder if that purchase order did not just go through.

So, when I send in my most recent assessment, with a few very reasonable recommendations that may be completely life-altering for that individual, I am going to hold my breath, cross my fingers, and try very hard to believe that this is really true.

I once saw a woman who was facing enormous challenges in getting any sort of support approved. It was very difficult for her, she said, not to compare notes with her friend from home. Her friend had been misdiagnosed with cancer, she told me, and the healthcare system of her native country had sent her friend for a week to a spa for emotional recovery. When her friend arrived on the train, an attendant was waiting to help with her wheelchair and luggage, and a ride to the spa.

The woman I was visiting looked around her now-cluttered dining room at her own unassembled monitors, and her calendar, and her list of appointments and medications she could barely remember, much less afford.

“This is barbaric,” she told me. It was hard to argue with her. She was sick, and tired, and had trusted enough to go through with preventive surgery that made her feel much worse than she had felt before–and this was months after she was told she should have recovered. She was at a loss to figure out how she could care for herself and her home now. Before her surgery, she had still been mowing her own lawn.

Imagine that this were different. Imagine that she had understood the affect that the surgery might have had on her life afterward. Imagine that she had still had the surgery, and that her doctors had planned for the hands-on support at home that she really needed to make a good recovery. Imagine that our biggest challenge in meeting need were simply a matter of figuring out how to schedule it all appropriately, and not whether it is even possible.

Imagine this demonstration works, and spreads to all of us in our new healthcare system.

I am ready to start imagining. Are you?

Written by Only Anecdotal

28 Jan 2014 at 1:39pm

Experts

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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.

Written by Only Anecdotal

25 Feb 2013 at 10:12pm

Payment Source and Isolation

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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?

Written by Only Anecdotal

11 Feb 2013 at 9:13pm

My Inspiration

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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.

Written by Only Anecdotal

4 Feb 2013 at 5:26pm

Pouring Down Like Silver

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The weeks lately seem to come in like the hurricane last week. Round here, wind and relatively minor destruction, some fear. Other places, much worse. And so it seems as news comes in and will continue to rush in tomorrow and possibly beyond. As understood in that infamous Chinese curse, we are living in interesting times. This was the week to think about a new database, my present work, and a new project headed our way. We survived the storm, and carried on.

So, once we were back to work and on the road again, I found myself on the one hand trying to catch up with the enormous number of referrals I have had lately. I am glad that the community seems so cohesive. Often, depending on the situation, I find myself surrounded by many colleagues in similar care coordination/coalition building/resource finding roles. I am glad that we know to call one another and work together when people call upon us for support.

And on the other hand, I find myself drawn into a brave new world of healthcare at this point, as I contemplate–deeply–the about-to-launch demonstration project known familiarly as “The Duals”.

Individuals who are dually-eligible for Medicare and Medicaid represent a vulnerable disabled population. The sorts of ping-pong games between the two insurers have delayed medical care, therapies, services, and equipment for most people at some point, often with aggravating, if not tragic results. Change is needed.

At the same time, change is frightening, especially when it feels that there may be a buck to be made… or saved. And given the sorts of systemic abuse that many people, notably those with psychiatric disabilities, have faced throughout history and throughout individual lives, it is no surprise that invitation to “new and improved” packages is met with cynicism, as well.

I am newly diving into this world, swimming deeper into the history and ideas the Dual Demonstration Project contains. The insurers–Integrated Care Organizations–have just been named on Friday. And from my early glances, I can see that it is an opportunity to explain to come to the healthcare world and tell the stories of what it is to have a disability in this world. The Duals are the pioneers, not only for this project, but for the entire Affordable Care Act, as it looks to this challenging coordinating effort.

And tomorrow… Vote! The ballot in Massachusetts, particularly, has perhaps never mattered more.

 

Written by Only Anecdotal

5 Nov 2012 at 10:33pm

Aco Ico

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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.

Written by Only Anecdotal

10 Sep 2012 at 7:40pm