What Do I Do With This?
A woman I saw last week was trying to figure out a number of important issues, including how to pay for dental work, and what to do about the ambulance bill that evidently was going to collections.
But in the midst of all this was the impending technology that had been given to her, technology that was supposed to make her life better.
Now, she was not in disagreement that it might be nice to use the cell phone. But after a year, it remained in the box, attempts at having put the thing together evident. A neighbor had charged it, but I found the back still in packaging. The woman’s problem, she told me, was how to turn it on.
“And the company keeps calling my home phone, telling me they do not want to lose me as a customer! But no one can show me how to use it.”
The phone was very similar to mine, and I found the power button. A message appeared saying that her minutes had expired, gave a number to call–not the same phone number on the packaging. But by the time I could get a pen, the number had disappeared.
“This is just harassment, don’t you think?” the woman put her head in her hands and put the phone and its cords back into the box. “Maybe later, but right now I just cannot deal with all this.”
A few weeks earlier, she told me, a visiting nurse had appeared at the door with a large piece of equipment to measure her vital signs. They tried to put it into her dining room, which has only one electrical outlet, already filled.
“They wanted me to unplug everything, and this is my dining room! I am sure it is much easier for them this way,” she told me, “but I asked them to take it away.”
Two good ideas, that would undoubtedly have been helpful to this woman, remain unused, unuseful, and furthermore, a source of enormous irritation to a person recovering from a serious illness.
I guess we could make arguments about the need for people, even older people, to adapt to a changing world. But it may always be a fact of life that not everyone will be able to do catch up with the technological advances that seem to come faster and faster as time goes by. I have spoken about the importance of personal contact, the fact that technology cannot replace humanity, and what we experience when we sit down and talk to a person, especially in the home.
But humanity tied to a piece of equipment can go a long way. The woman I visited would have been thrilled with the equipment she had received, if only a caring, thoughtful person had showed her how to use it, or made it easy for her to fit it into her home. It is so easy to assume that everyone can figure out how to use a cell phone, and that it makes sense to put equipment close to the place a person most often sits. But assumptions are often wrong. It is not an issue of noncompliance, or even stubbornness, for a person–any person–to ask for explanations and for accommodations. In fact, this is the greatest demonstration of will and self-determination. We can do much better to honor that.
The Last Taboo
Last night I had the great pleasure of seeing Alexander Freeman’s new film, The Last Taboo. I am so glad to have found out about it just a few nights before the screening, so glad to find this vehicle for change.
There are two things that we Americans just cannot discuss: death and sex.
I spend a lot of time talking about death with people who have to. But it is so easy amid the housing and transportation concerns to dismiss the basic human need for–right to!–love. And touch. And pleasure.
I will be writing more on this in the future, and will soon share some projects in the works around this topic. In the meanwhile, check out Alex’s profile (featuring this film and previous work) here.
Aging and Disability
Last week I had the opportunity to walk into the formal face of my double-faceted work existence as I attended both the Massachusetts Home Care Conference and the Massachusetts Statewide Independent Living Council (SILC) Conference. Back-to-back, I witnessed duals (not duels… although I wonder), and the very notion of what it means to be a service provider in this changing world.
A word from Christine Griffin perhaps brought it all back home to me. To paraphrase her lunchtime talk at the SILC conference, she discussed the notion of the newly aging–a great difference as I have seen between the newly sixty-year-old Vietnam-era consumer, and the ninety-five-year-old WWII veteran. Remember the clash of cultures back in the day? Depression-era stoic survivor not wanting help, versus Civil Rights-era champion demanding help–and equality, to boot? It is enormous, and Ms. Griffin’s statement about meals on wheels (“I am not going to accept the Salisbury Steak; I may just want to order a pizza!”) hits the nail on the head.
I find a lot of resistance to “help” from that Depression-era crowd. It seems to me that they are proud of their achievements, and do not cede their independence easily. But it is more than that.
I am forever frustrated–annoyed–by the idea that granting freedom to people by giving them the assistance they need to live life fully is an entitlement, and that some people are more entitled than others. For some strange reason, we feel that the compliant survivors of the first half of the nineteenth century somehow worked to earn services, and Medicare, and our help if they need it, whereas a younger person who has the misfortune of developing some life-altering illness or disability cannot easily receive the same level of support.
This is true in terms of the sheer availability of the most basic services, like homemaking, as well as at an administrative level where the power clearly lies more in aging community than in the younger disabled world.
I know this is always a controversial subject, but numbers tell a great story, and by numbers I mean distribution of money. We are supposed to collaborate in our aging and disability consortia, but too often I see a competition where there should never be one.
The services through the aging and disability consortia right now include the options counseling program–which was in its root a real collaboration between the two worlds–and the care transitions programs (STAAR, Coleman Coaching programs) meant to help prevent hospital readmissions of specific groups of people. It is absolutely astounding to me that in the second category, these programs seem to be popping up, presumably a product of aging and disability worlds, but they are the elder service agencies that own them. Was there ever any sort of collaboration? If so, when? Or has the disability world been present only in name but not in voice? How very sad.
At the Home Care Conference, I was delighted to meet up with a few of the Information and Referral staff from my Independent Living Center’s partners in the Aging world. When the ADRC project began over four years ago, our area included five of the Aging Service Access Points, and there were monthly meetings with I&R and options counseling staff. Over the three years that we met, I learned an enormous amount about how agencies that serve the same population with the same programs can differ so much. We learned how we are innovative in our own ways, perhaps the best ones for our specific communities; we learned to work together. And best of all, we all really liked one another. It was a key to our success, this sharing, and I miss it. I think that if we are ever to rediscover that spirit of collaboration, it will require more efforts like this, coffee, stories, community. Formerly quarterly reports and meetings are simply not enough. We need to meet monthly, informally perhaps, in smaller groups–often enough that we feel close, and not limited to the pressing demands as we are turning to one another for advice and support.
It is obvious why disabilities of all sorts and the aging community would want to come together: politically, we are much stronger as one unified voice than we are as separate voices asking for the same thing. Divided, we are easily conquered as well.
So, we need to step back, and listen. We need to tear apart our misconceptions, our silos. Oh–I know how trite this sounds as we have all heard the silo speeches before. But in fact, even in the dearest community to me, I saw how separate we all are, the aging services, disability services, medical services, technical services. It absolutely astounds me to keep going to meetings and conferences and hear all the same stories told in different ways, with great ideas that somehow are not–still!–uniting. So much potential in all of it, especially now. And now is the time to come together and act.
Aco Ico
This week, there have been a number of discussions around the penalties hospitals are now receiving for readmitting patients with certain conditions, and Medicare, within thirty days.
As I have stated before, I think this is a misguided practice, throwing gasoline–rather than water–on a fire that is already blazing. But of course, if we ignore the source of the fire to begin with, it looks as though we are all doing something!
Enter the Integrated Care Organizations and Accountable Care Organizations. Note the word care in these titles, for the focus–at least to me–is on the concept of integrated care, and efforts to coordinate services for people with chronic health conditions. This is most likely the key to preventing those readmissions, but of course, coordination is only possible when there is something there to coordinate.
I will spare you readers the rant this week over the lack of long-term care services. I suppose I could go on forever about that, even as I know the lack (and efforts to fill it) are on the radar of many others, as well.
The past week in the trenches was particularly hard. I am still a bit shaken at week’s end at the tragedies that come to my door every single week. Most of my referrals come from the hospitals, where I do not know how employees in the emergency departments and social work areas do not become completely overwhelmed with the sheer injustice of it all–they see it, in all the gruesome detail, daily. And I have the choice to say no, to walk away from situations that I find dangerous or inappropriate, never make that ethical choice to let go of life or to save it. Nonetheless, I remain shocked when I let myself, that this “greatest healthcare system in the world” bankrupts its customers–or our conception of healthcare’s role within government does.
I suppose that makes my views fairly clear. But if not, there is still time for discussion. Tomorrow I will be at the Massachusetts Home Care conference, hearing about ICOs and where we all may be headed in our thoughts around long-term care.
And after that, the Statewide Independent Living Council conference… Much to learn, much to ponder. More next Monday.
Hopscotch
I title this entry with the English translated name of Cortázar’s fantastic Rayuela, a labyrinthine, experimental journey that has got me thinking today about making an appointment for my annual physical.
Sad, yes, I know. But it is the utter futility of it, and not the pleasure in the endeavor that is reminiscent of the novel. For I know what will happen. I will make that call, admittedly quite a bit later than I should have, and I will be told that I must wait.
The last time I saw my doctor, she scolded me for missing last year, until I explained to her what it took for me to get the appointment in the first place. Truth is, in January 2011, I had hoped to get in soon, but was scheduled for June 2011. Then, an important meeting came up, and I had to cancel a week prior, and was told that the next available was at the end of January 2012. The staff were nice enough to put me on a wait list, and one morning in September 2011, I did receive a call saying that someone had cancelled for that same day. I had to work. So, January 2012 it was.
Now, I like my doctor, and in an urgent moment (like last summer’s particularly bad reaction to poison ivy), I am always able to get in on the same day, usually within a few hours. That is great. But it is truly frustrating to hear my doctor then sigh, and tell me that as things are right now, their office could not possibly handle consistent yearly checkups for every single patient in their practice.
I am super-healthy for the most part, lucky me. But nonetheless, following up on testing from this appointment, I ended up in a sort of biopsy hell, during which–at one point–someone casually mentioned that last year they used to just watch these things. It was nothing. It scared the living daylights out of me for a good four weeks, but it was nothing.
Another recommendation, I will be far more skeptical of the necessity. What an enormous waste. I received a letter from my doctor two weeks later. Benign. Gee, thanks. Fortunately, my frantic phone calls in to the clinic had already confirmed that diagnosis.
I mention all this because I am thinking right now of how little input I had in the process, how little was explained to me, and how fear of death instilled in me a certain compliance–I did what I was told. I believed my doctor and the medical professionals she had sent me to see, and I went along with the whole thing. Since everything was fine, I have to wonder, too, how many people had to wait longer because I was there? How much did this drive up the cost of the procedure? How crucial was it, in fact, that the condition be caught so early in the game? Would it truly have made a difference?
I fortunately never paid a penny past the ten dollar co-pay for the original appointment to my doctor. I never even saw a bill. Really.
Really? I hate to think that it is cheaper to walk down the expected path, to comply, than it is to question a procedure, an expense, an unwarranted fear, a stupid blip on a screen.
And then, what if it had been something? Would I ever be limited financially in the choices I have by my willingness to go along with the protocol? If I fell ill, and short-term rehabilitation in a skilled nursing facility was recommended, would I really be a fool to insist on going home? If I knew my own bad reaction to a certain medication, would I be charged more for requesting another?
I am looking more this week into the whole notion of Shared Decision Making. It has been on my radar for some time, following various discussions about it. Why, oh why, does it seem so controversial? Why is the power in the medical establishment, and not in the hands of consumers themselves?
It is all quite upsetting to me to think that it is so difficult to talk to the doctors we choose, when we share such intimate and important aspects of our lives with them. But it is. We do not want to offend the gatekeepers to our well being, for one thing. For another, well, sometimes we just do not know how.
Realizing the timelines of making appointments, I had intended to settle my appointment next year as I was leaving my January checkup. Unfortunately, I could not because the computer would not allow for an appointment more than six months in advance. That means, I should have made my appointment in June, or so…
So perhaps we do know how–but have gotten the clear message that we as consumers matter very little in the equation. No wonder we fear not being heard.
Help!
The theme this week is around people who need people. And while this is lovely in an ideal world, I have to say that in this one, these are not the luckiest people in the world.
These are not unfamiliar thoughts on this blog, as I have often discussed the woeful lack of community-based, long-term care services. If we did build a society in which we realized that people needing people is a natural, human instinct, we would not have built communities that value privacy and independence above the community itself. Twisted, wrong interpretations of mottoes we hold in our collective psyche: Live free or die. L’enfer c’est les autres. Our misery comes not from having to tolerate other people, but from our refusal to do so.
So, enter the assisted living. I have visited many an assisted living community, and I must say that they can be lovely. In most, I enter the lobby with the feeling that I have entered a grand hotel, often with happy hour, and brunch–with carving station. Also, mostly, with a homogenous population of a certain age and a certain income bracket… and a certain functionality, too. A little too poor, and it’s the end. A little too incontinent, and it’s time for the nursing home. I struggle with the notion of these restrictions, and also with the notion of yet another sequestering of a population in its own community.
Several years ago, I had the opportunity to participate in a three-weekend advocacy training sponsored by Massachusetts Families Organizing for Change. Tagged onto a fellowship that I had through the Leadership Education in Neurodevelopmental Disabilities (LEND) program, the experience was life-changing, particularly because of the people I met. But also because of the work we did. In one exercise, we sat as friends and family to design the ideal community for people with disabilities, for people we love. The first section involved looking at pictures of various houses. One was a typical colonial, not unlike my own house, with four windows, two up, two down, and a lovely little set of stairs leading to the front door. I saw that my mother would have enormous difficulty visiting, as she has trouble with stairs. So, we went on to discuss this, and so many other issues that come up. For wanderers, it would be such a relief never to have to worry about traffic or strangers, at least within a certain area. And what if we made it easy for service delivery, such as personal care? If people lived close together, it would eliminate transportation time and cost. If there were developmentally appropriate entertainment available, so much for the better. And so on. Before we knew it, we had created… Fernald.
Or something like it. Perhaps nicer, an assisted living sort of community, maybe. McLean Hospital, perhaps. But not the sort of community that has space for all of us, together. We anticipate the dangers of the outside world, and feel an enormous need to protect, to seclude, rather than to figure out ways to include and accept.
And so in our urgency, we reach that certain age–or someone we love does–and the time has come to find a place beyond the world and its children, its chaos and its property taxes, the hectic pace, the long walk to the mailbox in the snow, the laundry, the everyday.
We think of luxury in this way, an escape from the everyday responsibilities, but without this, without meaningful work, existence, can we remain whole and healthy? Or are we simply waiting for death?
In fact, I suppose we could argue that we are always waiting for death, but in reality I doubt that many in this country’s mainstream culture contemplate this notion at all, much less on a regular basis. And so we separate hints of it from ordinary life, this cultural obsession with youth, appearance of health, wealth… I fear that our desire to care, to help the needy, to seek solutions elsewhere, are all ways to separate ourselves, too, from the Other, the near-dead, the sick, the Us in them.
This week, I logged into my database to find an enormous number of consumers still flashing open files at me. I scrolled through the names, trying to remember the stories, and pictured some back porch, a kitchen table, a white dog, the scent of bacon and coffee still lingering from the morning, life, the stories, some waiting still to be told again, and lived, too, all distinct and yet the same in their foothold in this life, the one that we wish to tidy, to sanitize, to hold onto a heartbeat if not a heart.
I sat with three families in two days recently, and listened to the tremendous burdens they face as they attempt to care for their parents who cannot afford the luxury of assisted living. Is a nursing home the only solution? Not cheap, but at least feasible in the twisted funding structure of most state’s Medicaid programs, and their ever-present, post-Olmstead institutional bias. These frail family members no longer fit where they were, as they were, and yes, there are surely ways that they could, that we could fit intergenerational, inter-ability lives together, better. But for most of us, now, in a crisis, building a new world comes not so easily, not so affordably, not so quickly. We wish to include, but it is so much easier to protect.
Going Home
As hospitals edge even closer to dreaded October, when they will be penalized for thirty-day readmissions, I wonder why we are placing blame in the wrong place.
I know I sound like the overplayed record, which is indeed a sad place to be considering that no one plays LPs anymore (or do they?). But people who leave hospitals without sufficient supports at home will return, quickly, to hospitals for care. It will not surprise me when we see in the first reports on this policy that the hospitals who care for the sickest and the poorest will be those with the highest penalties.
Now, the problem that we continue to ignore is that people (including caregivers themselves) get sick, and people get old, and people at some points in their lives are either glad that they planned for it, or sorry that they did not. But of course, there are always situations when planning is impossible, and chronic poverty would certainly be among them, but accidents happen, as well. And even very good planning can be insufficient for those facing a long-term diagnosis like multiple sclerosis.
Every time I drive past new housing that features the classic staircase leading to a narrow front door, I realize how much our nation is in denial of this issue. I think this particularly in lovely communities without public transportation, or even paratransit. It is really worse than not planning for aging in place, or for sickness in general; in many ways we live in communities that were planned with a vision of independence, privacy, and all the things that seem so desirable, but in the long run often work against our very nature as social beings. No, we have not planned for disability, or for the necessity of frequent hospitalizations, and we continue not to plan for it, not only in terms of health care (including long-term care, but in terms of our entire communities.
In recent months I have met with health care professionals from Denmark and France. When attempting to describe my job, I have been continually amazed at their confusion as I try to describe my role, which involves trying to figure out which slot may work for given people to find funding for services. Both of these western European professionals told me that it is not a question, regardless of income, whether people will receive support (state subsidized support) at home, but that the difficulty comes in coordinating schedules, and actual logistics of carrying out the plans. In other words, there are supports, and enough of them, and people who need them do not have to jump through eligibility hoops of the many variety we have here. What a concept!
But it is interesting also to think that in these imperfect, often inaccessible foreign communities, there must also be some acceptance of multi-age communities, universal design, and death.
This is not to say that there are no choices for in-home supports (or universal design–so much innovation!) in the United States, or that they do not exist. In fact, they do exist, abundantly, for those who can pay for them.
For people who do have supports, who have informal support at home, or can pay for personal care services, I do believe that STAAR or other post-hospitalization counseling programs may well help people avoid hospitalization.
But for those who cannot afford help, who return to isolated upstairs apartments, or to another sick spouse, or to dependent children, we will continue to find them, exhausted and sicker, back in hospital emergency rooms. It is not a matter of inadequate care in hospitals, so much as it is a call for help where we live.
Up All Night
As summer winds down now, I admit to having fallen into the habit of staying up late, and waking up late, as well. Vacation for some, luxury of the absence of alarm clocks, at least ones that go off before 8am… I could get used to this.
But so far, my nighttime wanderings about the house are no reason for concern by anyone who loves me. Right now, I have the fortune of good health, and no one is watching over me to make sure that if I am not resting, I am safe nonetheless. But the same cannot be said for so many families I have seen lately, whose patience and tolerance has been tested by lack of sleep, and lack of a break.
So, we do a lot of talking about a national need for respite for caregivers, but I think back to 2006, when I was speaking about the Lifespan Respite Care Act, and have to ask now, where is it?
Where is the respite care that caregivers of people with chronic illnesses and disabilities so desperately need?
Where, I ask two years into a three-year grant to find statewide answers, is the money? Where are the resources?
I am not making light of the work that many dedicated people have put into answering these questions, but I have to say that a full six years after the Act was passed, I am frustrated at the paltry sums I sometimes can dig up as answers to exhausted families and friends who are doing all they can to provide care at home. But it is not surprising that they reach breaking points, that eventually some people give up.
Caregivers get tired, and stressed, when reminded to “take care of themselves,” when doing so seems like another thing on the list, something else to plan, and re-plan, and often figure out how to fund, often privately–if possible. I know, because I have been there, and been on the receiving end of people like me, who tell me that they wish they knew of a solution for that particular need.
But truth be told, simply having the day-to-day help for the people we loved would be enough.
Now, actually, when I say, “day-to-day,” I really mean “night-to-night.” This seems to be the one thing that I can hardly ever figure out for people, unless they have the private funding to pay for it. It is not necessarily that individuals always need that elusive 24/7 care that frequently convinces families to depend on nursing home care. But so many people seem to need most of their help at night, when they may be frightened, anxious, or simply cannot sleep. Or maybe they do sleep, and awaken from necessity, may fall–or may not awaken, may not breathe, may wander. The world runs during the day, people may visit, if only to deliver mail or a meal. But at night, in the dark, so much of the world stops, whether our own rhythms tune into this or not.
I am looking for answers here, for respite, for available personal care hours that may not be during the day… I have families who keep asking me for more help, and more and more, I am frustrated not to know what to tell them.
Evidence-Based Practices and the Full Moon
5pm came none too soon today, phones ringing, and the strangest and most difficult situations making me wonder what on earth had happened over the weekend.
And then, we all remembered the full moon.
Oh, I have used the full moon as a catch-all explanation before, along with other convenient superstitions. But in truth, it is just another way of expressing that I often feel a need for making sense out of nonsensical situations, and often want some control when in fact I have very little–or absolutely none.
I include the idea of “evidence-based practices” in this conversation tonight, not in the medical sense, but because I often consider the meaning of this concept in my own work, as I try to justify it. Sure, I do keep data for my day job, despite what I talk about here, and am surprised more at the sheer quantity of people served than in any trends I see in those particular numbers. Maybe the numbers I pull are not the right ones. But then, what should I be measuring?
So, I think through the various stories I hear–my evidence, only anecdotal, as I have said–and try to look for patterns. Why so many people from one particular town? I assume a common referral source, but then realize that they are coming from everywhere, from doctor’s offices to hospitals to the neighbor from two towns over. Why so many with the same disability? or the same age? and why all at once?
I try to think of marketing efforts, or people in the community who have talked to me recently, or anything that makes sense of it all.. and rarely can I figure out any sort of reasons. Maybe it’s in the water. Or maybe there really are a lot of people who are turning eighty years old at the same time in a particular town, a town that lacks resources for transportation, perhaps, and a town where reassessed properties have caused taxes to rise dramatically on houses that these octogenarians paid off years ago…
But we have not measured these sorts of things–not effectively–and we certainly have not added transportation resources or other services that may give any sort of opportunity to test what sort of difference they might make.
And this leads me back to thoughts about the full moon, and that natural event that somehow may predict things. The moon, the stars, the transit of Venus… Do they predict anything?
In many ways, I like to deal with uncertainty, to figure out how to cope in spite of it–because in the end, life itself is uncertain. Beyond that, also, sometimes all the causal relationships we try to create may in the end make no difference if the people involved do not believe in them. And they believe in them, because they feel the difference from a qualitative perspective, not because we assign a quantitative value to that difference.
I want to figure out evidence-based practices for people’s lives–but I am not sure that any of us is ever so great at determining what will work best in a situation that is not our own. We can insist that someone will do better in a situation, but in fact, we may be better at predicting the emergency department visits spiking at the full moon.
Perhaps the thing we should measure is whether people, given enough resources, really do figure out their own best practices for themselves, and in what manner they want to use our expert advice.
But for now, it is easy to be superstitious when we have so few other choices. And maybe, just maybe, good things will happen, if I just keep my fingers crossed.
Oh, and get ready: there is another full moon later this August! Only in a blue moon…
Waiving the Red Flag
Today was possibly the worst day I have ever experienced in my present job.
In my attempts to keep my ears and eyes open for any sorts of small details that may make life in the real world a possibility for an individual, I usually check my facts before springing forward with the news of a lucky jackpot. I usually research, then check again.. and this time I thought I had. But I obviously had not.
Or more accurately, I was misinformed–by an expert.
I fear–deeply–that the last hopes a man had to keep his wife at home may have dissolved today. In a nursing home, the woman will be able to get funding, but at home? Well, this is what waivers are for, unfortunately. Waivers, because qualifying for Medicaid–the only insurer that pays for long-term care–requires not only a disability, but poverty, as well–hence the waiver. But the waivers vary from state to state, and usually target a specific group of people, often a capped number of them. Rules tend to be stringent: over nine years old with autism? out of luck. Under 60 with need for services to prevent institutionalization? Too bad.
And this is where I really messed up. Even to age restrictions, in certain programs, there are exceptions. If you get SSDI, you have to wait two years for Medicare–unless you have ALS. And in the case of the family I was helping, a diagnosis seemed the best hope for help. But now, we learn that supports will be minimal–and not with the flexibility we had hoped for.
It all makes me think about how much healthcare depends on such studious and constant attention to minute, complex details of not only one bureaucracy, but several of them. It makes me think that when even those of us who are supposed to be knowledgeable of a wide array of programs cannot decipher the possibilities, we are all in trouble.
I am not sure how I am going to break the news to the family tomorrow. I at first thought to head into the conversation with more expert knowledge, with more potential solutions to a very difficult situation. But I think somehow that building this sort of hope right now would be cruel–and only an effort for me to feel better, not an actual, feasible way for a family to stay together with the supports they need at home.
There are days when my stomach knots up in this job: watching a man’s face as he takes in new information from a doctor “No, the dialysis is probably not temporary.” But feeling that there are no loopholes left?
I at first was going to refer to white flags in the title of this piece, but I realized that in spite of this, surrender is not the answer. Letting life happen is one thing: acceptance is often a process that has taken place long before I see people, even in new crisis situations. Flexibility, change, moving on to better things are difficult, but good decisions we can make in the wake of such crises.
But it is more than this. These incidents, ever the more common, I am convinced–especially in middle-aged people with chronic or late-onset disabilities–are warnings to us all. Red flags are up all around us, alerting us to the emergency, the urgent need for Money Follows the Person, and more: to Money Stays With the Person, stays at home. Community First.
Waiver? No. Living at home should not be the waivered condition: skilled nursing facilities should be the exception, the thing that needs a bit of hoop jumping, and maybe a few headaches. I wish that months ago I could have spent my time with this family helping them with living life beyond mere survival. Maybe someday, some coordinator of some sort, somewhere, will have this sort of a job. But until then, the struggle continues.
Only Anecdotal 