Hot Summer Days
This weekend was a lovely one, made all the nicer when I was able to see several friends. One group of us first met years ago, all of us divorced, and with children who have autism. We were talking Saturday evening about the paths we never expected, the challenges, the joys, the well-intentioned remarks from friends and family: “I just don’t know how you do it.” Well, you just do, and you learn. And most of all you accept it, this life. This full life, and the wonderful friends we meet in it.
Remembering the joy in our imperfect lives came at a good time for me, as last week was filled with the intensity I never used to see in summertime. In years past, referrals slowed, and people were more relaxed when I did see them. But this year, as most of the entire country is experiencing droughts and unbearable heatwaves, consumers I see are going through their own extreme situations.
I saw a man with a life-ending (not life-threatening, life-ending) illness. It is one of the rare cases where there is no wait period for Medicare for people on SSDI–and it is a rare situation where SSDI comes quickly, without appeal. In spite of this, he cannot access the medical equipment he desperately needs right now. And why? Because he moved from another state, and has applied and been assured he will get MassHealth Standard, but has been told he cannot have the equipment for sixty to ninety days, at which point, he probably will no longer be able to use it. Oh, and he cannot get a personal care attendant yet, either–that will probably take several weeks when he does have his insurance.
Another person was in a hospital, dying, if he has not died already sometime today. It all came about quite suddenly, and he was in the midst of making plans for his family’s future. It matters a lot in this case, you see: his biggest fear was leaving his adult son, who has mild developmental disabilities (read mild: not qualified for adult services).
Another man, also dying, is due to be discharged from short-term rehabilitation, but his family is exhausted from taking care of him. Their biggest need? a ramp–and sleep. Overnight services can be difficult to get without a substantial amount of money to spend, but not necessarily impossible. The ramp is not such a hard thing to get, but it, too, can be expensive. The man is probably eligible for programs that will help his family pay for what he needs, but paperwork takes time–and time is what he does not have.
All told, nineteen referrals later, I am left somewhat shaky and bereft, I admit. And then, I wonder what could change these sorts of situations. After all, people die. They die everyday, sometimes suddenly, sometimes quite slowly. But the biggest problem in all of this is our absolute refusal to contemplate death, especially when we are healthy. We have enough trouble discussing illnesses and accidents and disability, but death seems nearly imaginable.
It is a funny thing to consider. We have lived for a long time in a world where miracles happen–relative miracles when I think of the stories I heard from older relatives, from neighbors, from older people in rural Vermont when I lived there. Mothers dying in childbirth, their newborns then dying too without a mother’s milk. Pneumonia. Flu. Infections. Death seemed tragic, but not unfamiliar–and yet, even if we can prolong life now, it always ends. Are we just distracted? Have we figured out ways to see only what we want to see in our everyday lives? I wonder.
Morbid obsession is hardly the answer, but I wonder in the three situations I mentioned if the anxiety that the families are now facing would be the same if we were to embrace the finite joy of our lives, the possibility of abrupt changes, if we were to embrace the uncertainty that our lives always contain. The bureaucracy and confusion that these families are facing is very real., and particularly difficult in the face of serious illness–but also a very difficult system to change if the illnesses that precipitate the need for prompt services bring up subjects that we fear so much.
Of course, these families are reacting now with love, with grief, and with the best that they can give. But when a topic becomes impossible to discuss, it becomes isolating, as well. And this is truly frightening. It is the society in which we live that shuns death, that shields us from imperfection, or tries to make it pretty. I wonder if we would find it easier to discuss death if we felt the ugly and beautiful lives of those around us–the sick, the aging, the dying–not with pity, but with the true understanding that they are we.
French Literature
When asked about my background, I can note the fellowship in disability policy, or the work toward my master’s in public administration, the grant writing, and the years of personal and professional experience in working with the bureaucracy that surrounds special education and health care. Or I can mention that my intended profession was to write, and to study, teach, and research literature. Yes, I did that, and at times it seems like a lifetime away. I finished my master’s in French literature and then moved to comparative literature for my doctorate. I wrote, and was moving up in the literary world, and things were going quite well until… Well, this is the story of so many people who either become sick or disabled themselves, or have family members who do. Truth be told, it is a lifetime away. In my case, it was my child who needed me more than any scholarly attempts at deciphering Borges, so whether I knew it or not, my course was set from that time on. Juggling only works for a while when the situation is serious, when appointments and anxiety set a whole new trajectory for our lives.
In my case, we were lucky in the early days, with enough financial resources to support my not working, the medical costs, the transportation costs, the human costs of fighting to get what my child needed. But things could only continue this way for a while. Add a child, or two, or three, add a diagnosis, and a divorce, and the financial consequences of the time spent fighting rather than working, I know the challenges, the loss of dignity waiting in a welfare line (even if they no longer call it that). I know what it feels like to be so close to the edge. And I also know that I am incredibly lucky not to have fallen off.
The last week seemed an exercise in remembering the lessons I learned myself, as I met with family after family on the brink. One man told me that he had been crying himself to sleep in the hospital every night. His own disability had been difficult, but when his wife was hurt and unable to work, the challenges grew: the battles with her employer, the application to Social Security, the continued expenses–previously sustainable… And a way of life that the family had worked hard to achieve was quickly disappearing.
This was only one family, in the beginning stages of such devastation, but I see them all the time. I wanted to tell the man that he is not alone, but I am not sure that the news of so many people being swallowed by financial ruin in the face of disability is a reassurance. I think of Victor Hugo, Jean Valjean appearing in my referrals not occasionally, but often. I have met people who confess to me that they have stolen food, or money to buy medication for a child. Some have gone to jail for it, and find themselves living in hotel rooms, seeking endlessly for help. But a simple background check usually makes both housing and employment nearly impossible to find. When I see situations like this, day after day after bleeding day, I can only respond to the question about my relevant education to say that French literature was entirely appropriate to prepare for this.
Truth is, I wish I had answers for the families I see. Sometimes I can find some resource that helps people, or can fight a little harder, know the person to call. And most of the time, the strength of human spirit amazes me. I can continue to build a community and to learn, but most of all, it is the human element in all of us, the stories, that have the most chance of affecting policy and change. I hope so.
Control
Later this week, I have to go to a meeting to discuss a training module created on the topic of “consumer control”. Now, for those of us in the disability world, these words have powerful meaning: a tenet of independent living, of disability rights, of civil rights across the board, when you get right down to it. And yet, I am anticipating more attempts once more to water down the rhetoric, to emphasize the progress that has been made in “person-centered” service delivery, in “consumer-directed” service delivery, in shared decision making. And while these attempts to include the consumer/patient/client in the discussion about care and services are better than total exclusion of the person, they are still missing the point.
In my work, the number one complaint I hear from people when they refuse services that are available to them is that the services were somehow intrusive, inappropriate or judgmental. I hear that they are not what the person wanted or perhaps even needed, but that someone–a professional of some sort–convinced a person to accept help, or care–or it was just done for (to) them.
One person determining “what is best” for another person is not an exercise of equality in the least. In fact, as the person–or family in the case of a child–is seen as the receiver of something, rather than as the subject of a service-related relationship, the relationship is skewed from the start. Is it any wonder that people do not follow service plans when they are not the ones who are in charge of them?
Loss of control is perhaps the most frightening part about the aging process, and also within the world of illness and disability, if for different reasons. We seem to have a desire as a society to protect those who do not fit the stereotype of what we deem fit and strong. A number alone–a number of years–can determine whether a person is clumsy, or a fall risk. It can determine whether someone is categorically entitled to certain services, like meals on wheels. It seems to invite sudden permission to resort to diminutives when addressing a person whose name we do not know. And for people with disabilities, if the notion does not invite pity, it may well invite fear, as we avoid the issue of difference entirely simply by not considering access of all sorts, by not even entertaining the possibility of a wheelchair, or a seizure, or an inability to speak.
But we as professionals may well envision our perfect worlds for people. We may know the most effective treatments, and the best living conditions for a certain set of circumstances. And actually, we may have some great ideas based on the experience we have and the things we have seen. But always, always, our consumers are the best teachers we have. It is necessary not only to listen, but to relinquish the reins to them. We work not with the people we serve, but for them. Really. It matters that much. The medical care we give, the services we set up, everything we do should start and end with the same sort of relationship I would expect if I walked into an Apple store, and told the worker what I need my I-Pad to do for me. And we should deliver–and if we cannot, we should go back and figure out how to respond to the need we were unable to fulfill.
I talk to a lot of people who are very good at creating their own solutions that really do meet their needs. A man I met a few weeks ago was in a quandary when he needed a doctor’s signature to complete a transportation form. He had stopped seeing the doctor, because he had pooh-poohed the man’s choice of a treatment that was not what the doctor had recommended–even though that treatment had been effective in the end. A woman sat in a nursing home for months, complaining endlessly to whomever would listen, that she did not want to be there, that she wanted to go home. And yet, over and over she had been told that she was too weak, that she could not manage on her own, that she was not safe. This sort of prison must be the ultimate loss of control in our society. (Now she is home, safe.)
I had a dream not so long ago that prescriptions for medicationss were a thing of the past. All medicines were legal, and available, and we just took them if we thought we needed them, consulted with professionals if we thought we needed to. I know it sounds medieval, and reckless to some, but I wonder as the world becomes wilder, as we self-publish and grow, if we cannot reinvent the sort of control we have as individuals to determine our own needs, if we cannot let go of our own (perhaps unconscious) desire to “help” others (which is another word for controlling them), if we cannot see fit to trust–truly–in the ability of those whose abilities are different from our own to make decisions about their own lives.
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.
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?
Compliance
I was talking last week to a group of intensive case managers in a big primary care practice that is moving to a medical home model.
Now, I like my work a lot, especially when things click, and it really is a matter of helping people navigate the system. I like it even better when I get to tell the changemakers–legislators, heads of healthcare systems, etc.–what people really want and need.
The problem is, people often do not know what they want, much less need. And this creates a situation where other people, or whole systems, try to dictate this to them. Or more exactly, try to dictate how people should live their lives in order to be healthy, and therefore happy.
Health and happiness, though, are qualitative terms that are not easily measured by what may be deemed as wellness in many respects. If a person feels fine, that perception is unlikely to change unless something changes rather dramatically in qualitative measures: it hurts, or it keeps me from being able to do something.
And even then, it seems to me that the change has to be rather sudden. Loss of ability over time allows for adaptation. And in general, this is good.
But in comes the healthcare system, with its idea that it has to fix things.
Or so I hear. There is a rather amazing power dynamic between many a sick patient and a doctor. The one that is perhaps skeptical about all the prescription bottles sitting on his kitchen counter (how much they cost, and how they are making him feel) and the doctor who sees a treatment as the thing that will significantly improve that patient’s quality of life.
So, I spend a lot of time working on issues around quality of life–housing, for example. Or transportation–not just to medical appointments, but to go out to the store, or to the hairdresser (amazing how often this concern comes up). And I also spend a lot of time telling people what their rights are, what choices they have whether in the hospital or in trying to make home modifications. And the person who will use the resources is always the person who drives the bus, in my book.
The case managers I saw last week all were happy about this, and agreed.
So, I am always eager to hear about the professionals I work beside, too. What is frustrating to them? What would make their jobs easier?
I asked the case managers what their biggest challenge was.
Their answer?
Compliance.
It was universal, and it stunned me. I was thinking about that as I visited people in the next week, people in varied and often drastic situations. I was thinking about concerns around hospital readmissions and chronic conditions that often lead to more disease, or worse. And I was thinking about this whole idea of compliance, and what it really means.
I think it is a matter of control. Some people may know full well that they feel better if they stick to a regime of one sort or another, and still choose not to do it. But there may be a lot of other issues that lead to what appears to be lack of compliance.
Trust
There sure are a lot of comparisons between doctors and car mechanics. I guess I can see the similarities. Consultants with expert knowledge that costs us a lot. Repairs needed. I understand that the comparison is often made to emphasize the point that that we are rather free to shop around for people who do repairs on our automobiles, and there is–to some extent–more transparency in that process than there is in the healthcare process. We do not depend on insurance for most car repairs, and not at all for maintenance. And our lives can be significantly altered by the quality of work; in fact, shoddy workmanship on those large pieces of fast-moving metal might well land us in search of services from our local body (human body) shop.
But I have to say that in urgent situations both of the automotive and of the human sort, we are rather at the mercy of the closest trauma center. And really, we can only hope in these situations that
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.
Only Anecdotal 