House balances budget on the backs of children

Any of you who have been struggling to keep up with the "action alerts" you are getting from your various advocacy organizations should realize that the US House of Representatives has just passed a Budget Reconciliation Bill that will deeply affect Medicaid recipients in every state. There will now be a conference committee to iron out the differences (if possible) between the Senate and House bills.

The House bill would bring devastating change to basic Medicaid coverage for children, and will be particularly difficult for families of children with special health care needs. This is because of the proposed changes in the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) provisions that have-up to this point-provided strong protection for children with disabilities or serious health conditions. Let's put it this way: thousands and thousands of poor American children will not get hearing aids or (possibly) wheelchairs, orthotic equipment, occupational, physical, or speech therapy, if they lose their ESPDT coverage.

It is all very well and good for Congresspeople to say that Medicaid coverage should not exceed coverage enjoyed by ordinary people who have commercial insurance. For example, many employer-sponsored health plans do not include coverage for hearing aids, nor adequate (realistic) coverage for expensive items like wheelchairs. Nor do they provide for therapies for children for "habilitative" (that's the opposite of "rehabilitative") reasons.

However, even families with moderate income have to struggle to pay for things like hearing aids (which can cost over $5000.00) and wheelchairs (which cost even more). They pay out of pocket for therapies and other things.

These things will simply be out of reach for the poorest of the poor. A family earning 133% of the federal poverty level could, if this bill becomes law, be required to pay for hearing aids for their child. And realistically, folks, can a family living on less than $20,000 a year afford $5000.00 for hearing aids?

Or anything else?

Not to mention the cut to the food stamp program, and WIC, in this same House bill.

Time to get on the phone to your advocacy organizations, or if you don't know where to look for more info, click on the title above for a starting place.

mary

Why don't they just get a job?

Rant on, as they say on the message boards:

One of the most frequent criticisms I hear working in the field of maternal-child health, is this one: "why don't those moms just get a job"?

Well, they already have jobs, for the most part. Click on the above title to see some statistics. If you don't believe statistics, believe my anecdotal evidence. If you don't believe either, put your head back in the sand.

Or maybe you'd prefer to do some investigating on your own, if you want to know the truth. Do you work for a large company? Ask your human resource person what the lowest wage job is at your workplace. Multiply that by 2080 (the number of hours worked in 52 weeks at 40 hours per week). Then look in your city's classified ads and see what two bedroom apartments go for. And do your own math.

And while you're at it, see if you can figure out if there is a bus route from that apartment complex to your job site, because if you have to pay substantially more than 30% of your take home pay for rent, a car is probably not part of your lifestyle.

If there are low-paying jobs in our society (and there are) and we expect to find people to do those jobs (and we do), and we don't want to raise wages (and we don't, apparently), then the answer must lie in making it affordable to live in our communities.

Or simply acknowledge that we don't care where poor people live and raise children, as long as they fill our menial positions.

mary

Narrative Medicine-What is it, anyway?

I've had email from a friend asking me what "narrative medicine" is, so I offer the above link for a good explanation. Dr. Charon explains:

Gradually, I realized that most all of medicine is deeply saturated with narrative practices, not only in creating therapeutic alliances with patients and instilling reflection in our practices but also generating hypotheses in our science, learning our fabulous tradition of explanations about the human body, teaching students and colleagues what we know about sickness, acting with so-called professionalism toward one another and our patients, and entering into serious discourse with the public about what kind of medicine our culture wants. I invented the term "Narrative Medicine" to connote a medicine practiced with narrative competence and marked with an understanding of these highly complex narrative situations among doctors, patients, colleagues, and the public.

Narrative medicine does not spring from nowhere. Its lineage includes biopsychosocial medicine, primary care, medical humanities, and patient-centered medicine. What narrative medicine offers that the others may not be in a position to offer is a disciplined and deep set of conceptual frameworks -- mostly from literary studies, and especially from narratology -- that give us theoretical means to understand why acts of doctoring are not unlike acts of reading, interpreting, and writing and how such things as reading fiction and writing ordinary narrative prose about our patients help to make us better doctors. By examining medical practices in the light of robust narrative theories, we begin to be able to make new sense of the genres of medicine, the telling situations that obtain, say, at attending rounds, the ethics that bind the teller to the listener in the office, and of the events of illness themselves. It helps us make new sense of all that occurs between doctor and patient, between medicine and its public.

I've come to realize the importance of narrative to nursing, also. In fact, as the essence of nursing is caring-maybe I'd go so far as to say the definition of nursing is caring-narrative saturates our practice, too.

It all starts when I answer the referral line and begin to listen to a story that usually starts with "I have a child and that child is like this".

And away we go.

mary

Great Expectations

To go along with our thankfulness for our "way too much", this is a continuing picture series of 6 moms and babies from around the world, from pregnancy to (so far) six months of age. Take a look, and this might give you some perspective the next time you find a crowd of relatively healthy kids in your pediatrician's office all waiting for a flu shot.

Perspective on the fact of having a pediatrician's office, and the option to get a flu shot for your relatively healthy child, I mean.

This One Meal-NY Times Editorial

We often find it hard to be as thankful as we should be these days. For so many Americans, it is no longer a question of having too little or having enough. It's the difference between having too much and having way, way too much.

Human co-responsibility?

I was gone there for a while. You may not have noticed.

But after 12 years of pretty constant advocacy with and on behalf of people with cognitive disability, I took a break. Had a few major surgeries. Went back to school. Read a lot. Discovered a nifty message board. Reconnected with my kids.

Now it's time to get back to business, so to speak. It's kind of a scary place for vulnerable populations of people right now in 21st century America, where I practice what is called (with good humored hopefulness) "care coordination". Dealing with health care disparities all day, every day, is beginning to wear on my soul and make me think about how interconnected we all are, and how vulnerable we all are to, well---to sliding into one of the vulnerable categories ourselves. We are they, and they are we. That's what I think, anyway.

I have been doing a lot of thinking about bioethics, health care, the human animal, and interconnectedness over the last several years, and I've come to the conclusion that it all boils down to two questions:

1) Who am I responsible for?
2) Who is responsible for me?

Here's what I have found for an answer so far: I don't know how to determine who I have a responsibility for outside of defined relationship. For instance, my patients are my responsibility because of ethical professional behavior. My minor children are my responsibility. My child with cognitive disability is my responsibility.

But are the starving babies in Africa my responsibility?

I strongly suspect they are.

Anyway, I was away from internet discussion (beyond email and a message board) for the last three years and look what happened! Everything got blogged. I figure it's time for my blog, for what it's worth among the myriad ramblings out there. I'd very much like to talk about human co-responsibility in any manifestation or wherever that phrase takes your thinking and whatever comes to your mind in hearing it. And that will be the subject of discussion, whenever I get a chance to wax poetic, philosophic, or sophmoric, as the case may be.

If you can answer either of the two questions above, please comment here.

Happy Thanksgiving, America!

mary