Only Anecdotal

No numbers, just stories

Archive for the ‘home care’ Category

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

Help!

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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.

Written by Only Anecdotal

27 Aug 2012 at 8:58pm

On Waivers

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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.

Written by Only Anecdotal

19 May 2012 at 11:59am