Only Anecdotal

No numbers, just stories

Posts Tagged ‘independence

Back Off

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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

About Never Giving Up…

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Never give up.

They are words I have lived by for such a long time, but once in a while I have to stop myself and think about what exactly they mean.

I thought of this just yesterday as a woman described to me the long  journey she has endured through a medical procedure that was supposed to be life-altering–and was. The problem is that it was supposed to make her feel better, but instead has left her with a series of side-effects and subsequent infections, illnesses, and depression. A doctor recently told her that he was troubled by the advice she had received. Yes, he would have recommended the surgery, but he would have also told her about the risks. At her advanced age, she may well have decided to maintain her active lifestyle instead, even if it had meant that her life might end quickly and soon. Now, she spends days on the telephone trying to figure out how to cope with her new-found dependence on other people–not something she laments in itself, but an enormous disappointment when she felt that her doctors were promising a longer, healthier life. She told me she felt bullied into treatment.

I returned to work after a week’s vacation–the first long break I had had in several years. Moments of laughter and bliss reminded me of the things that are so vital to life, the things that make our fight for independence and equality all the more poignant.

My work as it is right now is meant to be a series of short-term relationships with people who need a hand in an urgent moment. An accident, an illness, a sudden realization that what had worked before no longer works.  If I can save people  time and aggravation by connecting them with resources that will not give them another list of places to call, it can be great. No wrong door, we say. And some of us fully believe in the power of that community.

But more often than not, the need comes not from the disability itself, but rather from the maneuvering necessary to gain permission from an insurance company, a human service agency, the government, or a doctor. What matters most, not within the context of a medical system, or a payment structure, or a menu of best practices–but within the context of our own lives?

It troubles me when I meet people who have undergone procedures that may well fall into the standard treatment regime for a given illness, or who have gone through the appropriate channels for.. say, mental health services… all with absolutely no long-term benefit to the person who was trying to remain or become more healthy. In too many situations, I wonder at the very motives behind a surgery or even a prescription, when the consumers themselves are  kept ignorant of the whole picture, or ignored if they ask questions.

I do not think it is a situation of giving up when a person decides not to treat a condition, not to undergo the biopsy, not to have the surgery when the treatment itself may well be more traumatic than the condition it is intended to relieve. But too often, I see too many people who realize this only after the fact. “If I had only known…” they tell me, as they then try to maneuver a set of stairs, to obtain life-sustaining durable medical equipment, to see a therapist at a frequency that actually is therapeutic… Permission for the stuff of life, the adaptations that make it possible to live real lives with our various states of humanity–it is not a matter of compliance with a treatment plan, or cooperation with a human service system, or affordability within a payment model.

Never give up, I say, on the vision that the world can be bigger, more flexible, more inclusive.


Written by Only Anecdotal

27 Nov 2012 at 7:15am