Archive for the ‘disability’ Category
Tea and Technology
Being invited into a person’s home is an enormous privilege. Most people I see have recently been quite ill, or more often have chronic ailments that have put them into the situation of wanting to find out how they can stay in their homes, so a good number of them also spend some time apologizing in advance for the mess.
With all the technology that is available now, I can see that it would be far easier and faster for me to teleconference. It would save my driving time–and mileage costs–and the consumer would never have to worry about the mess in the house. We could talk, and I could look things up immediately in my office, much more easily than is often the case when I go out. And I could see more people. I could teleconference with hospital staff, and even meet with patients if portable devices were available there.
But the problem, you see, is that you cannot drink tea by teleconference.
You cannot shake hands, or smell the lemon–or gosh, the kitty litter. You cannot sit beside a person in a hospital for a few minutes, and you cannot run into a colleague in the hall.
I see a tremendous solution in this technology to the difficulty so many people have just in securing transportation to medical appointments–or at least some of them. It could open so many doors, decrease the number of times a visiting nurse has to go out to a home…
But I think of the woman I saw two weeks ago. She had just made coffee when I arrived, in spite of the infection that was developing right then, post-surgery, in spite of the fact that a day later she would be in the hospital once more. She told me about her pets, her life before moving to this country, the flowers she had long ago planted in the backyard–and I could see the hostas from the kitchen table.
She was alone in the house, and spent many days without seeing another person, she told me.
Another couple showed me the schedule of their appointments to a variety of doctors and clinics, the pharmacist. It seemed to be the only time they left their house, and their lives revolved around it.
“Being young isn’t for sissies,” a consumer once told me. He confessed later that he had stolen the line from Bette Davis. But he said it was true–I was trying to figure out how he could get some help while his wife recovered from flu. He had just come home from the hospital after a bout of it himself, and they went round and round with that, then pneumonia from hospital to home, or short-term rehab, then home.. and the insurance?
I see people all the time whose lives are focused on their healthcare. It is hard to imagine them not going out to see their doctors this way, not to depend on the daily visits from a nurse. It would be so nice if the visits were not focused on this sort of monitoring, but if the people were healthy–even with disabilities–these visits would stop. It is a huge shock to lose a friendly face who comes every so often, or even just once in a while. It is hard to give up leaving home for a few hours, even to go through another blood test, or lecture. There is always the stop for lunch, the chat with the woman with the baby in the waiting room.
People with chronic illnesses and disabilities are often so isolated, and so easily defined not by their unique qualities as human beings, but by what is perceived by most of us as abnormal: their illness, their disability. I wonder, if we remove the barriers to easy treatment with telemonitoring, with other technologies… can we also devote so much time and expense into removing the barriers to bringing people back to the community? Can we devote the savings to better transportation for non-medical needs? Can we build better communities in general, more accessible housing, more available housing? Can we figure out a way to make it more possible for people to use their time in ways that they choose?
Can we fill the gap that we will create by removing so many in-home visits for providers, so many office visits for consumers?
It Won’t Happen to Me
Then they came for me
and there was no one left to speak out for me. (Martin Niemöller)
Last week was a rough one in the trenches. I had a short week, but found myself shaking my head again and again at the distinct tragedies I was watching.
Now, everything I write here is based on my own experiences, and not on any sort of surveys or data I have collected over time. But usually, I find later that the trends I see are real (most recently, my obsession with outpatient observation status increasing in hospitals over the last three years was substantiated).
But I have to say, judging from the sheer number of people I see, and from the increasingly dire circumstances they find themselves in, the healthcare crisis has hit levels I never imagined.
I think it is far worse than most people think, because most of the people who are in real trouble are completely invisible. Or, more exactly, they are inside, and isolated, either in hospitals or nursing homes, or in their own homes–provided they still have homes–which they rarely leave. Or they are in shelters, hidden because they are in places that no one wants to go. It is sure that we all know someone–a family member, friend or just an acquaintance–who has lost everything after an illness or disability. The problem is only getting worse.
I write today, on the eve of a Supreme Court decision, with a great feeling to continue the advocacy. But at the same time, I am aware of the Cassandra effect. Do we believe that this is real? Do we want to?
Why War Is Hell
He was alone in the hospital room, his wife gone for several years. The rest of his large family lived relatively nearby, but he said he saw them rarely. The man was near ninety years old, and now quite sick.
Today, on Memorial Day, I am thinking about this man, and many others I have met over the years.
I am thinking about my mechanic back in St. Louis, a man who was capable of figuring out (at small expense to me) my first car, a 1972 Chevelle that had been altered from automatic transmission to standard, three-on-the-tree. He worked in a garage where his wife kept the books and his buddy worked on the cars, and he oversaw things–telling stories and doing the car work, too, when no one else was there to talk to.
I am thinking about my neighbor, who was not such a storyteller, but one subject did inspire him, as it inspired many other people I grew up with–people whose tales became more real after my visits to the landing beaches in Normandy, after I heard stories, too, from the people who lived there. I am thinking about my uncle, his South Pacific stories. I am thinking about my dad who missed Korea by a weekend–he went home on leave before he was to depart, and the conflict ended.
When I am working, I am mentally searching through the grab bag of possibilities for services. So, asking the question to veterans often prompts a lot of memories–stories that typically involve time, place, but stopping short of specifics or feelings. “Some things should not be discussed,” the man I first mentioned told me. But that day, this veteran told me about the uncertainty, the people he thought he might have killed, friends he saw die. As I left him, I wondered how many times he had told those stories. I wondered about his life now. I thought about courage, and the notion that courage involves shielding people back home from the horror of it all. I don’t know that it is ever possible to do that. Yes, war on every level is hell.
I have a book that I carry around that has descriptions of VA benefits and who is eligible for them, but it is a system that I find quite baffling. In many ways it is easier to understand and navigate, but it is also so separate from the state services I know, so separate also from the rest of the medical world. I am used to walking into busy hospitals that greet their visitors with health messages, gift shops, coffee. The VA hospital greets the public with flags first.
But before they may reach the VA healthcare system, veterans have to enter the system. Veterans are not automatically handed benefits, but have to ask for them. If disabled during service, they have a determination of percentage of service-connection to determine the level of benefits. So, for that disability, the VA works quite well. But, as a veteran’s agent once said to me, “Don’t get hit by a bus and expect the VA to cover it.”
Towns in Massachusetts have given cash benefits to veterans who need them since the Civil War. And there are other federal programs like Aid and Assistance that help veterans (or surviving spouses) as they age and need more help, regardless of the veteran’s service-connected disability. I have met some great people who work for the VA, and as veteran’s agents in our towns. I have seen people get help that they never realized was available.
That said, it can be a difficult system to maneuver, with a great deal of paperwork, and long wait times for benefits.
So I wonder, if we are struggling right now to meet the needs of the veterans who ask for help and are qualified for it, how on earth do we expect to meet the needs of returning veterans from our wars today?
Associated Press reported on May 28 that forty-five percent of the returning 1.6 million veterans now are filing disability claims with the Veterans Administration. War is hell, surely, but from what I see, the war truly begins when it comes back home.
Often I see people who have served the United States, lost love, lost life, lost hope in many ways, but the saddest realizations come when people find that the promises–we will always cover you–cannot be fulfilled.
It is an enormous sacrifice to serve, we all know, but when we go into wars, it is the conflict at hand and the costs directly related to fighting the war that get the money. After the war has ended, at least on paper, it is too easy to forget. It is easy to dismiss the same old stories that we family, friends, spouses, kids hear over and over and over. It is easy to forget the service connected nightmares, the loss, the plea–I was there for you when you needed me, my country. Now where are you for me?
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.
Qui est “in”, qui est “out”?
I was listening to the radio on the way to work, and from the regular accident reports, the words caught my attention… again: “The driver remains in the hospital under observation“.
Now, when I was less obsessive about uncovering the use of language as a bureaucratic weapon, I would have thought that this was just a descriptive term–hospital stay just to make sure that the driver was not hurt more badly than originally suspected. But since I have been watching people in hospitals for some time, the first thing that leaps into my mind when I hear the words “observation” and “hospital” in the same sentence is this: does the consumer know that he/she has not been admitted as an inpatient?
To most people, and to me when I am in a rational mood, this seems ridiculous. If I were sick enough to venture near an hospital, I would not have doubts once they got me out of the emergency department about whether I was in or out. I have a band on my wrist; I am in a bed upstairs: I have been admitted.
But of course, anyone who works in a hospital, or who has been through this already, knows very well that this is an incredibly naive assumption. In fact, as I mentioned in my last post, Medicare is aware enough of the confusion that they have an informational page to inform consumers to ask about admission status.
For Medicare, and therefore for other insurers, it makes a tremendous difference whether a person is inpatient or outpatient, an A and B type difference, a copay type difference, and the consequences can be very ugly, especially if a consumer goes in expecting any services after the hospital stay, be they visiting nurses or short-term rehabilitation.
This is the sort of thing that upsets me tremendously when I visit people who are already sick or injured–not at their optimum speed for figuring things out. The rules may well be there, but the rules are confusing–especially for people who do not already spend enormous amounts of time thinking about hospitals or insurance. And honestly, other than those who really love the healthcare world and work in it, who would want to spend all their time deciphering Medicare?
This is not a new concern, of course, this crackdown on hospitals that may get soft on their admission policies. In fact, it is rather difficult as I see it for a doctor to override the decision–which is aided by software like McKesson’s Interqual.
It is not that I believe people should remain in hospitals longer than they need to be, or that hospitals should be providing respite to caregivers. But not unlike the use of emergency rooms for non-emergency primary-care concerns, hospital inpatient rooms may easily be the repository for people whose needs have gone unmet for some time in the community, due to the woeful lack of resources for long-term care.
And lest anyone think that by long-term care, I mean nursing homes, let me be clear: I mean support in the community, long-term support for people with chronic illnesses or disabilities. Without this support, people get sicker, have accidents, and die. Pardon me if that sounds melodramatic, but in my experience, I have to say–anecdotally–that it is true.
But given what we have to work with, which are people who most likely would rather not be in hospitals, the least we could do is to be clear about how we are treating them. I do not believe it would make people happy to have someone explain, “Now, Mr. Smith, just to explain, we are moving you upstairs to a room, but under observation status. That means that your insurance will (or will not)…”
Well, that is a tough conversation, isn’t it? And to continue, “And unless we admit you later, it also means that you will be discharged back home with no extra services.” And then, of course, we should ask Mr. Smith if he understands.
And chances are, he will not. Which is why advocates filed a lawsuit challenging the policy last November.
And yet, we continue to put people into hospital beds, observe them, and let them fret about the 20% when they get home.
There is a difficult balance when a system does not work well to meet the needs of its consumers. It is very easy to blame people whose lifestyles contribute to their poor health–and accurate often enough. But where is the support to monitor early stages of illness? to spend the time necessary to answer a concern? to involve consumers in a system that does not terrify them?
Most people do not ever want to be admitted as inpatients into the hospital. They do not want to be there under observation. They do not want to go to emergency departments. Hell, they want to stay away from that place!
And the truth is that at some point, we all will probably be in one or all of these situations. It should be rare.
It is not rare: we ignore our health, and we fear illness. We fear death.
Or more precisely, we fear feeling powerless.
And not just powerless in the face of illness or disability itself.
Consider this: many people hate checkups, and some do not even have primary care at all. Why? well… think of the power dynamic. It is so easy to forget once you feel comfortable with doctors, and with the healthcare system in general. But for everyone else, could it be that many people ignore their health because they feel powerless and ashamed in the relationship they have always had with healthcare providers?
And when we keep confusing people and sending them bills that they do not understand, who can blame them?
Only Anecdotal 