Only Anecdotal

No numbers, just stories

Archive for February 2014

What We Really Need

leave a comment »

The last week was a sea of phone calls, visits, and trying to stay organized and focused. I was also trying to finish long-overdue reports. It is an arduous process, namely because the data we collect does not match up with the data that is requested for one particular program’s report. Therefore, instead of hitting a few buttons and spitting out data, I need to go back and do it by reading notes and making tally marks–remembering in the process the details of daily life of every person I saw during the quarter. Sometimes it kind of gets to me.

It is the nature of the job that everyone I see in my work is in some sort of crisis situation. From the hospital (where I often meet people for the first time), they may often go to short-term rehabilitation hospitals (or to nursing homes that fill that function), and then home by the end of my time with them. The best-case scenario, I have to admit, is when a person never wants to talk to me again.

It happens fairly often. An individual is in the midst of catastrophe at one moment, but it is over after a time. Life goes on, and rarely does anyone want to remember any details from the lowest point of a tough spell. When someone says, “No, we are all set,” I am happy about it.

But this is not always the case. Many people simply die.  Or sometimes I am unable to reach people for months, but they turn up years later, with more problems, greater financial burdens, and perhaps loss of hope. Other times, they hang on, calling often for some sort of help, hoping that among my “options” is one that will actually remove the barriers that keep them so far from being the people they are, or were. Sometimes there is something that does help. Sometimes I see people I met previously, sitting in a restaurant, laughing with friends–when months earlier they were, say, in a nursing home. This is a good day. Most of the time, the best I can do is listen, and not lie when I say that itwilltaketime or youdonotqualifyforthat or youaredoingallyoucan. My role is limited–I cannot be a companion, or even a friend–as so often becomes quite obvious.

I have been thinking of this quite a lot lately, that going into people’s homes, entering into moments of great change with them… it is so difficult to remain neutral and unattached, but it is all in the name of survival with so many people to see. It is also what we are trained to do, in the name of professionalism. I don’t mean that we are expected not to care. We are just expected to remain objective and fair. It is a tough balance to do that, and then also to remain healthy ourselves.

I have been on the other end of all this support, especially when my boys had in-home services. At times, my family life revolved around whichever therapist was due to show up that day, sometimes (when we were lucky) joining another support person who came everyday. From the receiving end of these sorts of in-home supports, I have signed agreements of understanding that the relationship is limited, and not permanent. People who came to help my kid could not accept an invitation to bring their own families over for a friendly dinner with us later on, no matter how close we felt to them, no matter how well they fit into the fold of our family. It is dramatically difficult to be in this situation, to need someone hands-on for such enormous quantities of time (time that then cannot go toward reaching out to make a new friend, who can actually be a real friend–and isn’t it ironic that everyone keeps telling you to do this!), and then to say goodbye.

It is difficult, as a professional, to sense the intense isolation, the inadequacy of things like transportation, to see the gaps in much-needed assistance, the fear in people’s faces as you close the door behind at the end of the day–and then to walk away, to have to refuse to give that ride, to stop off and run that errand, to spend a little extra time when others–many others!–are waiting for not-en0ugh-help. It is sometimes a guilty feeling, too, to be relieved to get away from the people who try our patience and drain us… They are nearly always lonely, too. The health risks of loneliness have been documented (http://www.ncbi.nlm.nih.gov/pubmed/20652462), but we have yet to figure out a solution to the isolation, other than institutional care. There must be a better way to preserve individual choice, and yet at least support the means for people to sustain friendships and not just caretaking relationships.

So we leave our home visits, and we see the pain in the lack of connections for so many of the individuals we see. Sometimes we feel it ourselves, in our own desire for meaning, but ultimately in our utter inability to supply the one thing that people need the most–which is one another.

Written by Only Anecdotal

10 Feb 2014 at 8:08am

Back Off

with 5 comments

The referrals continue to pour in from One Care for assessments around long-term support services.

This week I want to focus on the very nature of our “long-term support service” world, and what happens on the ground when it becomes real to the acute medical model. For the last year (and then some) that I have been contemplating this groundbreaking notion of healthcare with the dually-eligible Medicare/Medicaid population, the policy side of the model has carved some notion of what this all means.

The reality is that the One Care program is growing very quickly, and plans are hiring all sorts of people who have not been privy to all the advocacy that preceded implementation. So, once more we are experiencing the pain–and possibility–of merging two very different service worlds (acute care meets the day-to-day grind)

This is hard, but it is excellent. Now we have the exciting opportunity to show, rather than just tell, how health and healthcare itself affects the lives of a real people.

In my second assessment, this is exactly the situation that presented itself, as I met with an individual who had previously received some assistance from my agency. She now has returned to us through a referral for a long-term services and support assessment–the next step as this individual seeks the expanded services, and lack of co-pays, that One Care can provide to her.

Now, this consumer has managed quite well on her own throughout her life, but she does have a noticeable disability. I am around it all the time–used to it in my own family, my friends, my work, my world in general. It is strange to me in other parts of my life to step outside of it all and remember that many people really do not spend a lot of time around people in wheelchairs, or who have amputations, who use assistive technology to communicate, who have anxieties, or whose movements or behaviors are somehow… different. I worked for a long time in translation, and found a similar phenomenon when other people remarked on accents. These are cultural differences, more than anything else. But our acceptance of these cultural differences–or even our expectation of them–can vary widely depending on our experiences.

As I have lived in a world of disability for a long time, I have also seen that there is often a sort of entrepreneurial (a.k.a. do-it-yourself) approach to life that comes from a life of living in a world that does not always meet the exact need. If we think about it, we all do all sorts of strange things to make our way in the world–it’s just that the adaptations of people who look, act and move differently are bound to be different, too. And when I say, “different,” I mean, it may look risky, unsafe, and generally inadvisable. Just like half the things I do at home.

Without going into undue detail about my most recent assessment, I want to note that my biggest recommendation to the caring and well-intentioned medical team is this: Back off! I know this sounds incredibly harsh, but sometimes people’s lives are working much better than we think they are from our objective perch. Sometimes a person does not want 24/7 care–and in fact, that round-the-clock home invasion may actually wind up being draining and intrusive, and detrimental to the person receiving it. Maybe bad things can happen. Maybe they can happen, anyway. Maybe the fact that we can put a service in place does not always mean that we should.

And we especially should not, when a person tells us not to.

Now, this gets us back to the crux of all independent living philosophy, which emphasizes consumer control. But this is it, in the home, on the ground, running. Or rolling, anyway.

And I cannot get far in this conversation without acknowledging the very large elephant that sits in every meeting room whenever we in our disability world meet with the Medical Model. That elephant is that the disability world does not trust the medical world. I suspect that the feeling is mutual.

This said, we want to trust, though. Don’t we? Isn’t this why we are here, at this historic point now? I see so many efforts from the medical world to create medical homes, and to reach out to people who have always been seen through a lens of “complex medical needs”–to see why health does not improve, or what is working well. From the viewpoint of a person with a disability, medical care is necessary, if only to prove a need for accessibility. But it is more. We have a real opportunity now to reinvent what healthcare means, not just to people with disabilities, but to all of us. Living life is the real issue, and facilitating our capacity to have a high quality to that life… We do not need intrusion, but listening, and understanding.

It takes time, and change is hard. It is a relief that everyone wants to try.

Written by Only Anecdotal

3 Feb 2014 at 7:32pm