Only Anecdotal

No numbers, just stories

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

5 Responses

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  1. The major issue with the medical model being behind so many services for people with physical disabilities, is the unequal power dynamic it perpetuates. With you the medical model deciding that I, the disabled person is sick, you are automatically my caregiver, my fixer. How then, can I ever be listened to, if I am seen as the sick one? I think unrooting this power difference, or trying to (it’s a huuuge task), is a tough but necessary place to start.


    3 Feb 2014 at 9:52pm

    • Kristen, thank you for your comment. I couldn’t agree with you more. There is an enormous shift that has to take place, also in the notion of illness versus disability. This really is not limited to physical disabilities, either. I wish I had expressed better that providing access is not the same as “fixing” someone, but rather as removing a barrier that exists for a person, which may include providing a service of some sort (such as a personal assistant). Creating greater access can improve quality of life, of course. It can result eventually in enormous health benefits, too, which I think is the way this all will be measured, because it is the thing that the medical community has the capacity to measure now. Power dynamic is difficult, and difficult to overturn, easy to overwhelm an individual person with a team of experts! I think the medical people who truly wish to make a difference must be aware of this, and must step back, sure that the consumer is always the leader of all discussions about him/herself.

      Only Anecdotal

      3 Feb 2014 at 10:32pm

  2. Nicely done. Sometimes well meaning professionals can provide support in ways that are too paternalistic. At the same time, consumers can often benefit from the collective expertise of professionals who have helped others in similar situations and are in a position to help. The key is fine tuning the assessment process to agree on the problems to be resolved and then collaborating on the potential solutions in a way that gives a voice to the consumer and the professionals.

    Karen Longo

    4 Feb 2014 at 11:12am

    • Thank youfor your comment, Karen It is true that professionals can come up with a wide assortment of solutions to problems that consumers are trying to solve, because we have the breadth of training and experience to bring to the table. One example would be having an AT specialist talk to a consumer about what he/she needs to do, and then working from there on a technological solution (starting with the LTSS coordinator whose expertise includes knowing where to find that AT professional–or preferably a choice of them).. The issue I think is when the assessment becomes less of a conversation than a shopping list–when instead of sitting down and solving a problem together, the professional hears or sees a few issues that may or not may be “obvious” to the consumer–then thinks through the “usual suspects” of service options and starts calling in orders. The classic story is of the missing meal filled by meals on wheels–maybe perfect for some people, but all wrong for a consumer who loves to grocery shop and cook with a PCA. So you are right that it is the collaboration that is key!

      Only Anecdotal

      4 Feb 2014 at 8:29pm

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