The Mote in the Light

"You only see the outside of me": Dwight Core, Jr

2008-10-05T18:38:00.003-04:00

The link is to an article in our local paper, discussing the placement of a home-video about Dwight in the Library of Congress. A fitting tribute, I must say. There is a video link in the article.

Watch it, but have tissues ready.

No amount of preaching is needed as commentary on this video; it speaks quite plainly for itself. But the mom in me felt stabbed to the heart to hear Dwight's father's voice "explain" that Dwight was "severely retarded".

There are 30 years separating Dwight and Emily, and for all the problems I have encountered with misunderstanding schools and health-care professionals, no one has ever used the term "severely retarded" to me. And yet, when I look at Dwight I see Emily. When I see Dwight playing in his backyard, I know (it's so obvious, to eyes that can see) that Dwight was never "severely retarded" and the only difference between Dwight and Emily was thirty years of elapsing time.

May the next thirty years bring as much change in expectations.

mary

Ban the "R Word"--please call her Emily

2008-09-01T14:48:00.003-04:00

I try not to jump on bandwagons too quickly, now that I am a little older and potentially wiser. However, I've decided that the time has come to stop being entirely nice about this subject.

Stop using the word "retard" as an insult. Just...stop.

If you are reading this blog because you are a friend or family member, then you know Emily. Every time someone perpetuates the use of the word "retard" as an insult, it implies Emily. It means "Emily". "Don't be such a retard" means "Don't be Emily". "That was so retarded" means "That was so Emily".

Is that how you want people to think about Emily? As a stereotype, and a bad one at that?

If nigger is the wrong thing to call a member of a specific group of human beings, then retard is just as wrong a thing.

So JUST STOP.

If you are interested in a little reminder, there are mugs, magnets, stickers and cards here. Maybe if you drink your coffee out of a mug with Emily's face on it each day, you'll learn to stop saying the R word.

It's time.

And I'm not the only one who thinks so; this current attempt to help people understand how much damage that one word can do is being fueled by the movie "Tropic Thunder". See, for instance, this page from Special Olympics Kansas.

And I'll tell you what: When Emily goes to school tomorrow to start her senior year in high school, if there is ONE T-shirt with the slogan "full retard mode" on it or if she overhears ONE student using that term, this mom will be filing a harrassment suit against my city public school system.

People: Wake up! The word "retard" used in this manner is "hate speech". I'm sick of it. I don't think we should take it anymore. And the indecency is only heightened by the fact that the word impacts those least able to speak for themselves.

So I will speak for all the Emilys out there:

STOP USING THE R-WORD.

mary ("Emily's mom")

Starting Over: Re-thinking Mote Guardians

2008-09-01T14:18:00.002-04:00

I'm going to be re-launching this blog. I'd like to concentrate on the concept that we are all guardians of one another and go from that personal conviction.

Watch this space.

mary

News Release: It's not the uninsured and the undocumented crowding our ERs

2006-07-18T18:48:00.000-04:00

Surprise, surprise! What we thought we knew about ER overuse is not correct, according to a newly released study by the Center for Studying Health System Change:

Hospital Emergency Department Use Varies Greatly Across the United States

Contrary to Conventional Wisdom, Communities with More Uninsured, Hispanic or Immigrant Residents Generally Have Lower Levels of Emergency Department Use

Press Release
July 18, 2006

FURTHER INFORMATION, CONTACT: Alwyn Cassil (202) 264-3484 or acassil@hschange.org

WASHINGTON, DC—Contrary to popular belief, communities with high levels of uninsured, Hispanic or immigrant residents generally have much lower rates of per person hospital emergency department (ED) use than other communities, according to a study by the Center for Studying Health System Change (HSC) published today as a Web Exclusive in the journal Health Affairs....

...Despite common perceptions that high rates of uninsured and immigrant residents contribute to higher ED use, communities with the highest levels of ED use generally did not have the highest numbers of uninsured, low-income, racial/ethnic minorities or immigrant residents....

...while a rapid influx of immigrants may contribute to ED crowding in some individual hospitals—particularly along the U.S.-Mexico border—immigration is not a major contributing factor to ED crowding nationally, even in many communities that have a large population of Hispanic immigrants.

"Hispanic immigrants—a high proportion of whom are uninsured—are not heavy users of EDs compared to other individuals, including whites with private insurance," Cunningham said. "And their numbers are still too small in the vast majority of communities nationwide to have a major impact on the health care system in those communities."

For example, noncitizens in 2003 on average had about 17 fewer ED visits per 100 people than citizens, while uninsured people had 16 fewer visits on average than Medicaid patients, about 20 fewer visits than Medicare beneficiaries and roughly the same rates as privately insured people....

Read the full news release at the web site linked above.

I always suspected it wasn't as simple as everyone made it seem to be. Things generally are more complex than they appear to be on the surface; a good reminder about knee-jerk reactions to perceived problems, probably.

:-)

mary

Change of Shift is up at Emergiblog

2006-07-13T12:21:00.000-04:00

The hardest-working nurse of the blogosphere has started a blog carnival starring nurses: "a nursing homage, if you will, to the great tradition of Grand Rounds. An amazing array of wonderful stories from nurses, patients and doctors are here for your perusal this week."

Check it out at Emerigiblog!

mary

Definitions vs. Understanding

2006-07-06T06:57:00.000-04:00

The major problem with designing a label for a category of human being is the subsequent feeling that the ability to label a concept means we understand the concept. The other major problem is that labeling people by categories implies both inclusion and exclusion and thus limits (by the very act of labeling) recognition of complexity. Labels simplify, and in doing so, eliminate complexity and cause us to concentrate on similarity rather than difference.

If you are a health professional, look around you today when you get to work. Think of the professionals around you as a group, and you will notice that you are surrounded by a group of human beings that, for the most part, are above average in intellectual capacity and performance. They are, for the most part, college graduates with a certain kind of intelligence that includes the ability to absorb and retain large amounts of knowledge about the human body and psyche. You are recognizing something about a self-selected group of people and we are going to label these individuals "mildly to moderately gifted".

Which is true. As a group and as individuals, that label defines something about the intelligence and ability of that cohort.

But the truth of the label doesn't cause us to understand that cohort, either as a group (an entity) or as individuals within the group. We know next to nothing about individual abilities within the group. We can't account for one person's ability to play the violin and another's ability to finish advanced Sudoku puzzles faster than anyone else; nor for this surgeon's specific ability to understand spatial relationships and that therapist's specific ability to understand body language. We can only say that within the range of "mild to moderate giftedness" there are individual strengths and weaknesses.

Further, if you look closely at that group we have now labeled, you will see many more differences. We won't all look alike, for one thing. We are different ages, races, sexes, and body shapes. We come from different ethnic and religious backgrounds. We have different sexual orientations. We are single and married, parents or non-parents, children of living parents or orphans. We like different books, we attend different churches, and we speak different first languages. We are as diverse as we are similar.

This concept doesn't seem difficult to understand, because we are living inside that group. We know it, we experience it daily, and we have self-reference. We understand that a label of "giftedness" implies only one thing, really, about the group we exist within.

Yet this seems a difficult concept to get across when discussing the label "mental retardation". We look around a selected group of people with functioning at the level that would allow us (using our professionals guidelines) to label them as "mild to moderately mentally retarded" and inevitably we focus on similarity.

But in reality, the individuals in THAT group are no more alike than the individuals in OUR group. That is misunderstanding.

That is the danger of labels.

If you want to begin to understand the individuality of each human with whom you have contact, begin to look around at the groups you find yourself in. Practice focusing on similarity and then difference. This is the first step to recognizing within yourself how the labels you put on people limit understanding of them as human individuals.

mary

17th Annual Kids Count Report Released 6-27-2006

2006-06-27T21:52:00.000-04:00

Since 1990, the Annie E. Casey Foundation has been releasing a yearly, state-by-state, statistical comparison of leading child health indicators, focusing on areas of vulnerability such as poverty, low birth weight, and teenage pregnancy. The report can be read in its entirety at the web site linked in the title.

The ten indicators studied are:

Percent low-birthweight babies
Infant mortality rate
Child death rate
Teen death rate
Teen birth rate
Percent of teens who are high-school dropouts
Percent of teens not attending school and not working
Percent of children living in families where no parent has full-time, year-round employment
Percent of children in poverty
Percent of children in single-parent families

According to the summary released with the report:

...the overriding picture that these 10 indicators present is one of little change since 2000....At the national level, only 4 of the 10 indicators of child well-being showed that conditions improved since 2000, while child well-being worsened on 3 indicators, and conditions were unchanged on 3 indicators. It should be noted, however, that many of these changes were very small and may be nothing more than random fluctuations.

Naturally, the portrait of child well-being varies among states, and state-level measures often mask important differences within a state. Of the 50 states, only 15 states improved on more than 5 of the 10 measures used here.

The portrait of change in child well-being since 2000 stands in stark contrast to the period just prior to 2000. Between 1996 and 2000, 8 of the 10 key indicators used in KIDS COUNT improved, and several improved dramatically. The improvement was experienced by every major racial group and in nearly all of the states.

Pre- and post-2000 trends are clearly illustrated by changes in the rate of child poverty since the mid-1990s. Between 1994 and 2000, the child poverty rate fell by 30 percent. This was the largest decrease in child poverty since the 1960s. Since 2000, however, the child poverty rate has inched up a percentage point.

Percentages vary quite widely from state to state:

...a summary of results from this year’s KIDS COUNT Data Book and highlights the enormous variation among the states. The rates of the worst states are nearly two to three times those of the best states on every indicator.

The importance of reporting state-level data is underscored by the fact that most measures in most states are statistically significantly different from the national value for each measure. In other words, the national value for a measure does not tell you much about most states.

There are wide and persistent disparities in ethnic groups:

The size of the gap between black and non-Hispanic white children varies by indicator, but the outcomes for black children are worse on every one of the 10 indicators. The same is true for American Indian and Alaskan Native children when compared to non-Hispanic white children.

An interesting look at the health of the next generation of Americans. Anyone interested in trends and the relationship between societal risk factors and poor child health should pay attention.

mary

Is saying it's hard the same as excusing murder?

2006-06-25T20:15:00.000-04:00

Another day, another story about a parent trying to murder her child and blaming the disability:

Kellie A. Waremburg, 32, of Pekin was charged Thursday for trying to kill her 4-year-old daughter, who has cerebral palsy, with a potentially lethal cocktail of medication. Waremburg told police she decided to give the mixture to her daughter to get her "to go to sleep and not wake up."

The child, Lexus Fuller, also has to be fed through a feeding tube, is physically handicapped and uses a wheelchair, has blindness and mental retardation, all of which can be related to cerebral palsy.

Although Waremburg's individual struggles with raising Lexus were not known Thursday or what was the exact reason behind the alleged attempt to kill the girl, her case is similar to that of Karen McCarron, the Morton woman who allegedly suffocated her 3-year-old autistic daughter, Katherine, and told police she "wanted to end her pain and Katie's pain."

There's lots of talk in the disability community about these recent murders (and attempted murders). And it's not just the murders themselves, but the fact that advocacy groups are using these murders as a way to talk about how difficult it can be to raise children with significant disabilities in modern societies that offer little in the way of actual family support.

Now first of all, there isn't any excuse to murder your child.

But I don't think this is really what the groups who are speaking up are trying to say. I think they are just responding to questions along the line of: "Excuse me, Mr. Advocacy Organization Representative: is it REALLY that difficult to raise a kid with autism? With cerebral palsy? With whatever condition includes severe or profound cognitive impairment, Etc?" To which Mr. Representative responds, "Yes. Yes, it is difficult".

And then the reporter---and the rest of the non-disabled world---automatically responds, "Well, see? I don't blame the parent. They were really pushed to it".

No, they weren't. I've been a parent of such a child, and known and worked with other parents of kids with profoundly complex and difficult disabilities, for 16 years. I don't know anyone who has killed her kid.

And although the large majority are having rather ordinary lives, I've known some in deep despair. And still, they don't murder their children.

But how are parents of children with complex and challenging disorders supposed to reveal the truth of their lives, the difficulties that are real and challenging, without causing reporters (and society at large) to jump to the conclusion that murder is understandable?

I ask you.

And once the community in which these murders occurs is made known of the despair of some parents, what responsibility does it bear to try to assist?

Because if it's just about shocking front-page stories, if it's just evoking a "tsk-tsk" response from the community, and particularly if the mothers and fathers who kill get off easily on the basis of "sufficient suffering and punishment"...well, I fear for some other fragile children. I really do.

mary

Nurses in Nontraditional Roles

2006-06-22T11:03:00.000-04:00

Or Mary's answer to: "What did you used to do when you were a real nurse?"

There's a persistent and pervasive stereotype of a nurse as the person in white next to the hospital stretcher or bed, and a continuing misperception that "real nurses" only work in hospitals, or in agencies or settings intricately entwined with the acute care business: home health, nursing homes, and doctor's offices. Sadly, it's not only the general public who has this misconception. Nurses themselves often labor under the same misunderstanding of the wide range of nursing practice.

It's true most of us started in hospitals after graduation. That's really the training-bed for most of us, and is in fact the traditional basis for nursing education. Nurses of my mother's generation weren't asked where they went to school, they were asked where they had training. There are still some diploma schools hanging in there, to this day. You can still become a registered nurse by attending a "training" school.

But there is more to nursing and nursing education than bedside training, as important and bedrock as that is to our special skills. We can't really become nurses without learning to care for acutely ill hospitalized patients. But many of us have left the bedside.

We are still nurses.

Sometimes nurses---and nurse-educators---define nursing by what it is not: not medicine; not social work; not psychology. But some emphasis should be taken to define nursing by what it is: caring for patients across the entire wellness spectrum in a holistic manner.

Now, I'm aware of all the cliches in that one little definition! I know "holistic" is overused, and "wellness spectrum" is so 70s! And the definition of "patient" includes individuals, families, groups and communities. Nevertheless, that's what we do; we care for patients sick and well, assessing functioning across the entire range of human experience physically and psycho-socially and basing our care on an understanding of holistic human functioning. We care by promoting health, preventing illness, or ameliorating as much as possible the effects of illness or disability.

And we do that lots of places besides at the bedside.

Nurses, with their unique education in holistic care and training in assessment of individuals and communities, are in demand by many employers far removed from the hospital bedside. There are real nurses working in community health nowhere near the local public health clinic. There are nurses in forensics; nurses in advisory roles in law and ethics; and nurses (like me) working in case management and other roles on the periphery of acute care.

Case management of people with chronic illness is an area in which nurses are uniquely qualified; we have an understanding of the way bodies work and a good perspective on individuals as part of families, groups, and communities. We can assess physical and psycho-social aspects at the same time, and use the nursing process to guide care coordination.

Case management doesn't have the "coolness" factor of, say, ICU or the ER. But I haven't left nursing, because I have left the bedside. I'm still practicing nursing. I'm just dressed in street clothes and out and about in people's homes, instead of dressed in scrubs and starting IVs at the bedside in ICU.

So in answer to the nurse who asked me what I used to do when I was a "real nurse", my answer is: the same thing I do now. I cared for people. That's nursing, after all.

mary

Peter Singer not being misquoted

2006-06-20T07:51:00.000-04:00

As someone who is occasionally accused of misquoting and misconstruing Peter Singer vis a vis his views on infanticide for disability, I would like to call attention to his own explanation on his Princeton web site:

http://www.princeton.edu/~psinger/faq.html

He says it is all right to kill disabled babies. Perfectly fine and ought to be allowed.

But even though he has carefully argued that newborn babies in general are not "persons" (and you should read his own explanation of what a "person" is, so I am not accused of misquoting), he notes that it is really and actually only OK to kill disabled newborns. I mean, after all, they are disabled.

Princeton pays this man an awful lot of money to teach these principles. He has an endowed chair, which means he is never going to be fired no matter what he says. It is apparently OK to preach that a certain segment of the population ought to be killed if no one wants them. This is not "hate speech" at all, because a logical argument has been made.

If it is logical, it is true and therefore valid.

Is there such a thing, really, as a living human non-person? Is there any reason we cannot extend Singer's argument that a"person" is "a being who is capable of anticipating the future, of having wants and desires for the future"? If, say, a living human can't prove he or she ever had wants or desires for the future but has exceeded the magic 28 days of human life, can't we just kill them at that age, too?

Logically?

mary

They're hurting and killing our children

2006-06-13T06:54:00.000-04:00

I'm having one of those periodic slumps where it seems so much is wrong I can't work on it anymore. You know?

You do if you raise, love, or care about people with mental retardation and related developmental disabilities.

First we have moms killing their kids because they "just can't take it". We have Karen McCarron suffocating her autistic daughter to "end her pain". We have justified reaction to this from the disability community. We have newspaper columnists trying to say that the murder was wrong but "understandable".

Let me add my voice, for what it's worth:

It is hard to raise some children with complex disorders who have behaviors that are not understandable or controllable, and that are occasionally dangerous to self and others.

It is not wrong to acknowledge this. It is not a condemnation of disabled people nor of people with complex disorders to say it is difficult to parent these children.

It is wrong to kill your child because of his or her disorder, no matter the difficulty.

Next we have people abusing and killing people with mental retardation in state institutions in Missouri. To quote the St. Louis Post-Dispatch:

Mentally retarded and mentally ill people in Missouri have been sexually assaulted, beaten, injured and left to die by abusive and neglectful caregivers in a system that for years has failed at every level to safeguard them.

While recent publicity over two of those deaths has sparked outrage across the state, a Post-Dispatch investigation has uncovered widespread mistreatment in 19 large state institutions and hundreds of smaller group homes supervised by the state across Missouri.

The abuse has been largely shielded from the public by broad secrecy laws, shoddy investigations and ambivalent police and prosecutors, and it has been perpetuated behind a series of broken promises by state officials to do better.The abuse and neglect can be measured in numbers: 2,287 confirmed cases of abuse and neglect of residents since 2000. Of those, 665 resulted in injuries with 21 deaths.

These exposes are extremely sad to parents of children with mental retardation, who grow up to be adults with mental retardation who live in institutions (and even a "group home" is an institution) and will live perhaps many years after a parent's death. Whom do we trust?

That we have not come too far in figuring all this out can be gleaned from reading the short history of the Arc of the US. Parents began organizing into what would become a national movement in the 1930s. 75 years later, they are still killing our kids in Missouri.

And elsewhere. Missouri is just a convenient example.

All these horrors point up for me, once again, the intricately entwined nature of arguments about "quality of life". I would prefer not to be on either extreme of this convoluted and circular argument, one side of which goes something like this:

~~~Babies are born who will become people with complicated disorders that include significant cognitive impairment.

These people will be costly to help.

We can prevent this by getting rid of the people who are costly to help. We can prenatally screen, we can practice euthanasia in the NICU, and we can kill the others some way we haven't yet proposed.

Therefore, we should kill them because we can; the ones who are left are on their own.~~~

And the other side of which goes something like this:

~~~Babies are born who will become people with complicated disorders that include significant cognitive impairment.

All human life is worthwhile, and quality is not a value based on presence or absence of disability.

Therefore it is wrong to ever discuss how difficult it can be to parent a child with a complex disorder, because this discussion implies judgement of value, worth, or quality.~~~

To the first argument I am unalterably opposed.

The second argument seems logical except it is based on a falsehood, and that is that telling the truth about a family's situation implies a judgement has been made about value. And that is not only false, it is a dangerous precedent. It is OK to talk about how hard it is to parent a particular child; talking about difficulty is not the same as making a value judgement.

If the disability community does not want "outsiders" to make this assumption (for instance, that dependence upon technology for continued life equals lack of value) then "insiders" should not make this assumption either (for instance, by saying parents who discuss the traumatic experience of raising particular children are trying to convey a judgement upon the child's worth rather than simply trying to convey traumatic experience).

My two cents today; in a foul mood; despondent and devastated by news of so much loss.

But determined that I've got to keep on somehow, anyway.

mary

The disconnect between the Medical Community and the Disability Community

2006-05-31T07:40:00.000-04:00

First, apologies for my absence. Combine too many projects with full time work, parenting, and a tendency to stay up late reading novels (the truth may hurt but it sets us free!) and you have a blogger who doesn't get around to posting.

Someone like, oh...me.

The worst part is the blogs I haven't kept up with; I have some reading to do in the blogosphere today!

Mea culpa.

***********************************************

One of the vexing problems in my professional life is the disconnection between the medical community (and by this I principally, but not exclusively, mean doctors and other primary healthcare providers) and the disability community (including parents and individuals with disabilities themselves). At times this gap seems so wide as to be impassable.

Since I constantly have a foot in both camps at all times, from where I stand it often looks like two entrenched armies on two separate fields that have no bridge between them. And the purported messengers sent from camp to camp often don't even speak the same language. Worse: they think they are speaking the same language; alas, the words may be in the same tongue but the meaning is based on perception. And perception is, unfortunately, reality.

The Boston Globe article linked in the title is an example of one of the problems: prenatal testing for Down syndrome.

On the one hand, we have a group of medical professionals who recommend that all fetuses be screened for this "devastating" disorder. On the other hand, we have lots of families who ask, "what is devastating about this disorder"?

Down syndrome is not life-threatening; not a terminal disease; not a devastating disorder to the people running around with trisomy 21. That is a mis-perception by the medical folks, bought into by the community at large, and only seen as a misperception by those few "in the know".

The ones in that other camp, over there across in that field without a bridge: parents and people with Down syndrome, living life each day for better or for worse. Mostly like everyone else, faced with trials and tribulations, but also joys and fun.

Yet when that camp tries to send a messenger to the other camp, tries to explain to the medical camp that they have misunderstood the disorder and misrepresented the reality...they are met with stony silence. When they leave, the professionals will shake their heads and mutter about "denial" and "false hopes" and "reality".

And yet, by GOD! they are speaking from experience. So which perception of the truth is reality, anyway?

Another area of disconnect occurs in discussions of neonatal "quality of life" issues surrounding extreme prematurity. The medical professionals will introduce the concept of "quality of life" to the new parents by using examples of probable disabilities. They will, in essence, list all the ways in which the baby, if it lives, will differ from the norm and will talk about the "profound" nature of the disability and then make the argument that disability equals poor quality of life.

"Quality" being defined by presence or absence of disability. Good=less disabled. Poor=more disabled.

The other camp, over there, includes people with serious disabling conditions who refute the argument and say quality is not defined by the presence or absence of a disability. And I think they are the voice of experience, after all...but yet, they are not at the bedside with the parent. That person talking to new parents about their baby's "quality" is someone trained to view "quality" through a disability-negative lens.

Yet these same medical professionals, who are trained to judge quality of life based on presence of disability, are the same doctors we subsequently take our disabled babies to for treatment. In fact, the medical treatment of disabled children accounts for a great deal of dollars spent in healthcare. I might hesitate to go so far as to say some of us (that would include me, the person in the uncomfortable shoes on either side of that divide) make our living from the healthcare problems of disabled babies.

Except: we do.

This divide even occurs in the organizations we build. Although some of the large disability-specific organizations have physicians on their boards, by and large the disability-specific organizations are organized and run by either parents or individuals with disabilities themselves. And our professional organizations, even those dedicated to disability-related areas (such as a CSHCN Title V program) go to great lengths to have "parent advisory boards" or "consumer representation", but this is usually to fulfill some grant requirement and is not a real way to include non-professionals in the power-base of the organization.

Sadly, this divide seems to be getting larger instead of smaller. More and more conditions are pre-screened. More and more reports are written about the majority of Medicaid costs being spent by the vast minority of recipients (which is code for "people with serious disabling conditions requiring extensive technological support"). More and more parents choose alternative therapies and treatments because they cannot find a doctor in the mainstream interested in working with low-incidence and complicated conditions.

What's the solution?

I'm getting stretched tight between these two fields. I never was a cheerleader and don't think I can get down to an actual full split! This leaves me in danger of falling three ways: into the professional camp over here, into the parent/disability camp over there, or way down in the chasm in between.

It's kinda dark down there.

mary

Newborn Screening: Why it Matters

2006-05-15T07:30:00.000-04:00

All parents in the US are---in theory---familiar with "newborn screening". Remember those "heel sticks" on your tiny newborn's feet? All babies in every state in the US have a small blood sample from these heel sticks sent to a state lab for analysis, using that state's protocol for newborn screening. These tests are for conditions that are treatable if caught early, to prevent side effects or early death.

The American College of Medical Genetics has recommended that all babies in all states be screened for 29 conditions. The AAP has endorsed this, while noting that this will require fundamental changes not only in the way state labs test samples, but in the way the information is reported and followed-up.

Some of the conditions tested for are very rare disorders. It is possible that many primary practitioners will never see some of these disorders in their practice. But a standardized testing system would lead not only to earlier identification, but to better information for primary practitioners.

My state of Virginia has just added 17 additional tests to the protocol. The hope is that caught early, these conditions can be treated to avert devastating side effects and/or death.

However, because the percentage of babies who screen positive is very tiny compared to the total number of newborns each year, complacency seems to build up. Generally, parents are only dimly aware that all babies are screened. Nursery nurses can become lackadaisical about filling out forms legibly or carefully entering the correct primary care physician for the baby. This last piece of information is incredibly necessary, as the state lab will contact that physician and some of these rare disorders require immediate---immediate cannot be stressed too strongly---intervention.

So I'd like to suggest everyone take a minute and read some of the stories at the Save Babies web site. If you are short of time, then just read Storm and Tiger's story. I guarantee you will not feel complacent about newborn screening after that.

mary

J. stands up to see the light

2006-05-09T06:49:00.000-04:00

For my little clients who have profoundly disabling and multifaceted conditions, growth and development takes its own unusual path. I've learned to just regard developmental milestone lists as better for screening potential problems in a selected group of children (such as "all well-baby checks in our practice") than as guides to sequential development. I understand the theory that development progresses in orderly fashion...but have too much experiential wisdom to not raise a skeptical eyebrow.

I went by J's home the other day to drop off some paperwork for mom. J is a four-year-old client I've known since birth. I haven't seen him in a few months except for a very short visit in a doctor's waiting room. The last time I saw him he was sitting up comfortably in his wheelchair, banging on the tray with a toy while vocalizing (loudly!) and enjoying the heck out of the racket he was making.

J has a congenital brain defect: a kind of neuronal migration disorder that is rather rare. When he was born, his mom was told he would "probably" die before age 7. He would not walk, talk, or feed himself. He would not see. He might not hear. She had the opportunity to admit him to our local "home for disabled children"---but she declined.

Now, if this was a fairy tale instead of real life, I'd tell you that J can do all of those things he wasn't supposed to do. But he doesn't. However, this list of deficits in no way defines J.

Laughing defines J. Banging stuff. Working and worrying his shoes until they are off. And like a sunflower, finding the source of strong light.

When I went in for a few moments to visit with mom, there was J---standing up at the couch and leaning toward the bright sunny window.

J pulls himself up to a standing position, if you give him a source of bright light to reach for.

On the outside, if you concentrate on that, you will see a little boy with an oddly shaped head and unfocused eyes; a head-banger who has to wear a helmet all the time, who is G-tube fed and incontinent and has seizures; who speaks no words and listens only to some internal music we are not privileged to hear.

But from inside, J experiences life as bright light, soft couches, and a mom who likes to kiss him on his neck under his ear because it makes him squeal with laughter.

Maybe there's a lesson in that. Meantime, I have to tell you I am enjoying thinking about J at the window in the bright sun.

mary

Parents Go Online to Understand Genetic Diagnoses

2006-05-05T07:02:00.000-04:00

This snapshot (short summary of current research) comes from the FPG Child Development Institute at the University of North Carolina/Chapel Hill. It is a very interesting report that all pediatric practitioners should read, because it clearly shows the true impact of the internet for parents looking for information for genetic disorders.

One point from the article summary:

This study shows, however, that this knowledge no longer belongs solely to the professional. These parents may know more than most professionals about their child’s specific genetic disorder. They may have spent far more time doing the research and talking with other parents about optimal treatments and interventions, and come to see their role to be that of educating
service providers about what they have learned. In effect, they are "citizen scientists" who share authoritative knowledge with service providers and expect to be partners in decisions affecting their children.

Today's primary care providers, as well as specialists, are working in tandem with parents who are using the internet to find information. That is the reality. While this can sometimes lead to parents who obtain very questionable information--especially on treatments that go beyond "alternative" and into fantasy--it also leads to parents who have a great deal of quality information. It would be very wise to pay attention to what parents are learning outside of your practice with them. In fact, asking about the information they are learning should be part of your practice.

The truth is, for rare disorders particularly, parents who spend time looking for answers are oftentimes going to be your primary source of quality information. You just have to leave yourself open for learning genetic information from an informed layperson.

That's the hard part.

No, every parent who finds a support group and a bunch of web sites on the internet is not an expert.

But some are.

Not acknowledging that can be detrimental to your own practice. If you are trying to keep up with current information about rare disorders, keep an open mind about what parents bring you.

mary

Would someone please click on "view my profile"?

2006-05-04T08:36:00.000-04:00

From the left hand side down there, can you do me a favor and click on "view my complete profile" so I can see if it is working?

No, this is not a blatant attempt to get cred. It's just a Blogger thing, I think...I have lots of new visits, but my profile numbers are static.

Of course, maybe I'm just hopelessly boring and must live with that.

mary

What is a Medicaid Waiver and Why the Heck Should I Care?

2006-05-03T19:09:00.000-04:00

Wonderful, heart-felt and heart-wrenching posts on some other blogs (in particular, this one by Dream Mom) have me thinking about Medicaid (again---I admit, it's an occupational hazard).

People who have no experience living with disability (their own or their child's) have limited understanding of the safety net provided by Medicaid. Basically, Medicaid provides health care coverage for poor children and pregnant women, the elderly, and the disabled. We won't go into too much detail, so stick with me, because this is important!

Medicaid also provides for institutional care for poor people in certain kinds of nursing homes and in "intermediate care facilities for the mentally retarded" (ICF/MR). If you meet the criteria needed to be admitted to any of these institutions, and you are poor, Medicaid will pay for your institutionalization. There are lots of state options here, it's not quite as simple as all that, but basically, if you are poor and in an institution, Medicaid will pay for your nursing care, and all related care required to maintain your life and health while you are institutionalized.

However, what many people don't realize is that it is possible to get Medicaid to "waive" the requirement that you be institutionalized to receive that same level of care. This is known as a "Medicaid Waiver", and what it does is supply the nursing or personal attendant care, and other needed services, in your very own home! And if your child meets the medical or disability criteria (in other words, meets the same criteria needed to be admitted to one of those institutions) then only your child's income is counted for establishing "poverty". (Adults with disabilities will have to account for their income in a similar manner).

Now, don't you wish it was all that simple? It should be, but you will know I am lying if I tell you to run on down to your local department of social services and just sign up for a waiver!

First of all, each state differs in the kind of waivers they have had approved by the Centers for Medicaid and Medicare Services (CMS). Each state has different criteria. Each state has variously long waiting lists, or shortages of providers, or inequitable services based on narrow criteria.

Nevertheless, parents should ask about waivers. See the link in the title above to start looking in your own state for contacts. Call your local public health department, local department of social services, or your local "mental retardation" agency. Call until you get someone who knows something about waivers.

Dream Mom's post about not being able to work because she cannot find day care for her child is one I hear over and over. We would have more taxpaying parents if we had real, solid support for those struggling to care for these complex children at home. The choice should not be between putting your child away in a nursing home and working to support your family.

There is not enough citizen support for increasing these kinds of programs. Everyone is under some kind of misapprehension that "there are lots of programs for kids like that". There aren't. These programs require tax dollars, and that requires voters, voters who understand that in order to support people in their community instead of state institutions or nursing homes, we need to increase funds. This is a common sense and worthwhile thing, not a "drain" on the "government". It keeps more people employed. It keeps more families intact. These are our neighbors, the kid up the street, the mom you see at church.

Dream Mom's kid. My kid. Maybe your kid. All our kids.

mary

This, that, and the other, and stuff

2006-05-02T19:34:00.000-04:00

OK, so my title is a little forced. They don't pay me for this, you know.

:-)

Cover the Uninsured Week: May 1-7 is Covered the Uninsured Week in America. Check out the Robert Woods Johnson page for lots of facts, figures, and local contacts. Kids who are uninsured tend to avoid primary care and end up in the ER. Or as one of our local neurologists told us today at a forum, one vial of insulin: $32.00. Three days in PICU in DKA: $18,000.00. Do the math.

Autism Risk and Safety Management: While this information checklist is intended for first responders and law enforcement professionals, it contains a lot of useful hints for health-care personnel, too. It is very easy to escalate situations into utter chaos when you are faced with a child or adult with autism who cannot understand what you want, cannot communicate to you in any way, and is incapable of cooperating. For instance, it would be really helpful to front-desk office staff to have some basic understanding about processing problems ("give them a few minutes to process your information"), personal space issues, sensory overloads, and use of repetitive movements for self-calming. In fact, many of these hints are just good ideas for all kinds of de-escalation situations.

Cumulative Social Disadvantage Associated with Poorer Child Health: This study looked at the effect of cumulative social disadvantages (poverty, minority race/ethnicity, low parental education, and not living with both biological parents) and found "the accumulation of social disadvantage among children was strongly associated with poorer child health and having insurance did not reduce the observed health disparities." Everyone in primary pediatric and family practice should bear this in mind: it's so much more than "is your baby up-to-date on his shots?", isn't it.

Finally: What Maternal/Child community nurses have been saying anecdotally for a long time: Mom's Attention Benefits Tiny Newborns for Years:

Dr. Karen E. Smith of the University of Texas Medical Branch in Galveston led the research, part of an ongoing study of 360 children born between 1990 and 1992. Many of these children were born at a very low weight -- around 2 pounds, on average -- while the rest were normal-weight, term newborns.

The researchers looked at whether a mother's responsiveness to her child during infancy and early childhood was related to intellectual development through the age of 10. They judged responsiveness by observing mothers and children interacting at home.

In general, the study found, when mothers reacted promptly to their child's "signals," were affectionate, used a positive tone of voice, and offered praise and encouragement, their children showed stronger intellectual development.

This was particularly true when mothers consistently showed this parenting style throughout infancy and the preschool years.

"An encouraging finding was that, despite the increased risk for slower cognitive growth found for those born at a (very low birthweight), responsive parenting was able to moderate this risk," Smith and her colleagues write.

Grand Rounds is up at Polite Dissent (no, I have nothing there this week!-but don't let that stop you) .

mary

What is wrong with this story?

2006-05-02T07:59:00.000-04:00

(You may have to complete a free registration to read the complete story at the Boston Globe site/mary)

The voice of a lost generation

Freddie Boyce survived neglect at Fernald, radiation experiments, and told the story

By Scott Allen, Globe Staff May 1, 2006

In August 1941, Mina Boyce, a 21-year-old widow and an alcoholic, handed her baby over to state social workers, setting little Freddie Boyce on the miserable road to the ''Water E. Fernald School for the Feebleminded."

Over the next seven years, Freddie lived in seven foster homes and then was locked behind the iron gates of Fernald, an institution for people with mental retardation. There he would stay until his ''parole" 11 years later.

The injustice, similar to the fate of thousands of children unlucky enough to fall into government custody before 1960, might have been forgotten, but Boyce never accepted the idea that he was ''feebleminded." Decades later, when documents revealed that he and other children had been subjected to unethical radiation experiments while at Fernald, Boyce seized his chance: He rounded up his friends from Fernald, filed a lawsuit, and exposed a dark chapter of American history.

''We didn't commit any crimes. We were just 7-year-old orphans," declared the traveling carnival barker at a packed Washington D.C. hearing in 1994. Though he was testifying about being fed radioactive oatmeal, Boyce was really talking about being locked away for years without education, without love, without hope.

Freddie found hundreds of other boys and girls much like him among the 2,000-plus residents at Fernald -- mostly ''problem" children who were being warehoused at the 19th-century brick campus along with people with genuine mental retardation. All of them suffered in an environment that offered little education, required menial labor such as picking beans and mopping bathroom floors, and permitted outsiders to visit mainly on ''company Sundays."

Freddie couldn't understand why he was being held -- ''There ain't nothing wrong with me," he would tell attendants -- to no avail. When, in 1960, the Fernald staff finally agreed with Boyce's claim that he was safe to leave the school, he couldn't read or write -- and no one apologized.

Well, you know what? No one apologized to the "people with genuine mental retardation" either. You know, the poor "really" feebleminded kids who were subject to the same brutal conditions as the kids who were mistakenly mislabeled? The ones who were also victims, who also had committed no crimes, who were also abused, neglected, and shunned.

Every time I read one of these stories, in which we are supposed to feel horror and pity for the poor mis-diagnosed child who was placed by mistake into a hellhole, I cannot help but feel frustrating anger that no one seems to care about the ones who were actually diagnosed correctly!

I guess it seems all right to society that the real feebleminded ones were mistreated. It's only when a non-feebleminded person is mistreated that it appears to matter.

Apparently the "hundreds" who were found among the "2000-plus" are more deserving of empathy than the "thousands" treated just as poorly.

Aren't they all just as deserving of our concerned horror?

mary

Disabilism and the Health Care Community

2006-04-30T20:05:00.000-04:00

In honor of Blogging Against Disabilism Day (check out the other blogs participating today at Diary of a Goldfish), I think I had better make one thing clear:

I do not speak for "the disability community".

I am a parent of a child with a significant disability and a nurse who practices in the field of pediatric disability and special health care needs. My understanding of the issues of disabilism come from an attempt to understand my own attitudes every bit as much as from the attempt to understand the reactions of others to my child and my clients.

It is because I am a nurse that I have a fundamental misunderstanding of disability against which I must continually guard myself! This is because the health care fields persist in the view that disability is a medical condition and not a social construct. We use a continuum to measure a concept we think we understand, and at one end we put "normal" and at the other end we put "abnormal". And this thinking pervades health care; we use this same yardstick to measure everything.

Even the very fact that we think we know what we mean when we use the word "disabled" is, in itself, an example of prejudice. It's what leads people to identify themselves as part of a subgroup, because the majority group perceives a difference. Perception of difference leads to difference, in a sort of circular experience for all.

Yet the truth is that there is deep-seated, pervasive prejudice against perceived disabilities that affects us all, even those (or maybe, especially those) who are diagnosing it in other people. This is especially prevalent in neonatal areas when a child with a significant and obvious disabling condition is born and there comes an inevitable "quality of life" discussion with the family. Which is, in essence, a discussion of all the things the baby will not be able to do, all the ways in which that baby will never be like a non-disabled person and all the significant supports that child will need if he grows up.

It is hard for doctors and nurses to separate their own pre-judging of disability from the lives they are discussing. For one thing, the prejudice against significant disability is so deep it seems natural. It even seems sensible: "who would want to live that way?" is what I'm often asked. "He will never walk. He will never see!"

If that is not prejudice, what is?

Think about this: is it the condition that is so awful, or the lack of automatic inclusion in society? If we had a society in which it was easy to function despite a sensory or motor disability (we don't! this is fantasy here), why would it matter if one could not walk? If you can envision a place where every single area of every single man-made surface--and as much of the natural world as can be--is accessible to a wheelchair, for instance, and you still persist in thinking it is better to walk on your own two feet, then you need to think about that. That, dear reader, is disabilism. Or ablism, depending on your point of view!

Think about the fact, the very true and obvious fact, that there is nothing separating you or those you love from the experience of living life with a disability then a split second of fate or chance. And if you would not regard your own child as of less worth the minute after the car accident in which he loses a limb or some cognitive functioning then you would the minute before, then what is up with your prejudices against others in the same situation?

My little contribution to Blogging Against Disabilism Day is this: if you are a doctor or nurse taking care of people with disabilities, think hard--very hard--about how you regard disability. Come to start thinking of disability as a social construct (what is wrong with our social structures that make it difficult to be disabled) more than a diagnosis or condition (what is wrong with the person). This doesn't mean stop treating what can be treated, stop researching and questioning and providing good adaptive equipment and equitable access to your services. It does mean examining your conscience about your own knee-jerk reactions to obvious disability; thinking about why this bothers you and why you equate disability with less worth and how you can stop. And how we can begin to think about societies that make room for everyone, reduce barriers to accessibility, and even come to understand how our own perpetuation of the "disability as something bad" pre-judgment--which permeates health care--contributes to the problem.

mary

PS: I'd like to recommend some articles at the DREDF (Disability Rights, Education, and Defense Fund) site: Disability Rights Law and Policy: International and National Perspectives, edited by Mary Lou Breslin and Silvia Yee. In particular, Where Prejudice, Disability, and "Disabilism" Meet, by Silvia Yee.

Chernobyl: the legacy

2006-04-28T07:02:00.000-04:00

This is a very disturbing portrayal of the human disaster wrought by the Cherynobyl fallout ten years ago.

There is no question that the radiation has damaged hundreds of thousands of people. And yet I am having a hard time with some of the portrayals and articles about the human victims, because the language used to describe the children implies, for instance, that the victims are "monsters" and that they "look like a whole other race". This video, for all the compassion you can hear in the narrator's voice, flatly states the Belarus people face degeneration as "people like these grow up to pass on their genes to the next generation" (to paraphrase).

In addition, the conditions shown in this institution are inhumane in the extreme, yet the narrator describes the children being fed on the floor as "loved and cared for" at the same time he acknowledges that when they grow up they will simply be admitted to the main mental institution.

What happened is horrible. But the resulting congenital disorders do not remove anyone from the human race. These are human beings, not "disasters", not "monsters".

Well, while I examine my conscious to see why this kind of portrayal of legitimate horror-so illustrative of man's hubris and our unconcern for the consequences of our own misuse of our world-strikes cords of dismay in my mind, maybe some of my readers know what efforts are ongoing to try to help Belarus. What is a legitimate effort ongoing, and how I can support it; where to send my money or otherwise do my share. Sincerely. I can't go rescue all those kids literally, but I'm hoping there is something that I can do that will be more than a token response.

I should note that it is not possible to determine from this video just how many of these children have conditions that were the direct result of the Chernobyl fallout. The WHO Chernobyl report has data that indicates the rate of congenital problems has not substantially increased, so perhaps this should be kept in mind.

However, regardless of cause, this video's portrait of children in a floundering society is very disturbing and thought provoking.

mary

How did I miss Pediatric Grand Rounds?

2006-04-27T21:51:00.000-04:00

Wow, things can slip right by you when you don't read a few blogs for a few days...all of a sudden there it is!! The new Pediatric Grand Rounds-Premier Edition-up at Unintelligent Design. Check out the pediatricians of the blogosphere in their specialty grand rounds.

And then of course one of the wonders of the medical blogosphere (don't you all feel there needs to be a better word than "blogosphere"? Please inform me if I have overlooked it, 'k?) Grand Rounds is up at Health Business Blog. Lots and lots of great links; I hope you find time to read some of them.

If this keeps up I'll be reading blogs six or eight hours a day. Will have to give up sleep and...other fun stuff. Use your imagination.

:-)

mary

Blogging Against Disabilism Day

2006-04-26T06:54:00.000-04:00

The Goldfish over at Diary of a Goldfish has announced a Blogging Against Disabilism Day for May 1, 2006.

Thanks to becca at Comprehension Dawns for the notice.

mary

What I've Been Reading on the Web Lately

2006-04-22T09:46:00.000-04:00

Inspired by The American Journal of Bioethics blog's "What we are reading today" entries, here's what has been interesting me the last week.

Comments welcome~~~very welcome. MORE than welcome. Please comment.

Enough groveling.

:-)

Secret Worlds: The Universe Within

"View the Milky Way at 10 million light years from the Earth. Then move through space towards the Earth in successive orders of magnitude until you reach a tall oak tree just outside the buildings of the National High Magnetic Field Laboratory in Tallahassee, Florida. After that, begin to move from the actual size of a leaf into a microscopic world that reveals leaf cell walls, the cell nucleus, chromatin, DNA and finally, into the subatomic universe of electrons and protons."

One could watch this over and over. One, er---cough---has watched it over and over.

:-)

The CBC Network (Center for Bioethics and Culture), one of whose stated mission goals is "to defend the dignity of humankind", has a speaking avatar who introduces the site the first time you click on. Do you find this as ironic and silly as I do? There is a voting link on the right hand side, if you want to vote about it. Of course, it just occurs to me as I type that this is increasing site traffic there. Maybe the silly talking avatar has a place...maybe Moteguardian could get one.

One ponders.

Interesting essay by Tom Connors at The Yale Journal for Humanities in Medicine entitled "On Esthetics & Disability". One of his points:

"What I have cited merely describes the reality of a person with a disability in modern culture. I can argue that it isn't always so, in times past we have been honored deprecated, sanctified and vilified. Every possible reaction has been manifest at one time or another, but never were we unidentified. By virtue of differences in intellectual capacity, behavior, or appearance we are always identified as separate and distinct -- as the other."

"Retiring on the Edge of Poverty in Rural America": on being poor, old--and female--in hidden pockets of America today. At the NPR website.

"Learning to Savor a Full Life, Love Life Included" from the NYT:

"There, for the first time, Ms. Graham, who is mentally retarded, and Mr. Ruvolo, who has Down syndrome, will be permitted to spend time together in private.

The pair were coached in dating, romance and physical intimacy by a social service agency at the cutting edge of a new movement to promote healthy sexuality for the seven million Americans with mental retardation and related disabilities.

In what experts say is the latest frontier in disability rights, a small but growing number of psychologists, educators and researchers are promoting social opportunities and teaching the skills to enjoy them."

Read the whole article, especially the appalling statistics for the percentage of people with mental retardation who have experienced sexual abuse by their 18th birthday.

The National Nurse. A move is afoot to establish a federal office: There is a bill before the US Congress seeking to amend the Public Health Service Act and establish an office of The National Nurse:

"[W]ithin the Office of Public Health and Science an office to be known as the Office of the National Nurse, which shall be headed by an individual serving in a position to be known as the National Nurse. The Secretary shall appoint a registered nurse to serve in such position. The Secretary shall carry out this section acting through the National Nurse."

Wonder what the hours are?

:-)

Finally, I have been spending hours reading nursing blogs found on the left hand side of the page at Mediblogopathy, even though I'm not listed there yet, either! It really comes home to you how diverse nursing is, how interesting nursing can be. How many very talented writers we have among us (and some who are pretty bad!).

I'm inspired to increase my own list of links.

Maybe tomorrow.

What have you all been reading lately?

mary

Attention diagnosticians: why are you using the term FLK?

2006-04-20T18:20:00.000-04:00

OK little rant coming. Click away now or be forewarned.

Why are we seeing this persistent acronym which stands for "funny looking kid" in medical records? As a diagnosis?

FLK is an informal term used when the clinician feels the child has mild or soft signs of a possible genetic syndrome. In other words, when he has mild dysmorphic features.

Why not say "mild dysmorphic features" to begin with?

Now, it's bad enough when this term is thrown around in general conversation between clinicians. I know what you mean, and you know I know what you mean. It's like shorthand, or abbreviation. It's not the most disrespectful of terms, but it's one you would not really and truly like to let a parent overhear you using, is it? So, bad enough to use it in everyday conversation.

But it is not a diagnosis. And it is not a proper description of a sign or symptom, either.

If you mean "the child has mild dysmorphic features possibly indicating a genetically based syndrome"...say that.

Do not---do not---write FLK as a diagnosis or as part of your evaluation of systems. Which I have seen twice---TWICE---this week alone in medical records. Tell me this is not being taught in medical school. Tell me there is not a professor running around telling you to use that term in written diagnostic terminology.

For heaven's sake, people. Why am I having this conversation?

mary (goes off to get a cold iced tea and consider the state of modern pediatrics)

Some goodbyes are forever

2006-04-18T18:26:00.000-04:00

Sometimes people get the impression that nurses (and others whose work brings them in frequent contact with illness or trauma) get hardened to death, or immune to the sadness it brings. And I just don't think that's true. A nurse can get used to the possibility of death. When prepared, a nurse can assist a patient or family during the dying process, support the grief of the loved ones, and respectfully care for the body of the deceased person.

But not without grief, seen or unseen.

I no longer work in clinical care areas as a clinician; my work as a case manager requires different nursing skills. I'm not the one who starts the IV or inserts the foley. I'm the one standing by with the parents and siblings while the clinicians work. I'm the one who sees them at home, goes with them to the doctor visits, and visits their child at school. I'm invited along on their journey through the complicated and confusing American healthcare system, and I come to know some of them very, very well.

So it's not without grief and a sorrow too potent to explain that I tell you I lost a little client today. She died suddenly, at home: Mom said she just stopped breathing. This was one little feisty baby, let me tell you. When I shut my eyes, I can see her laughing. She has just learned to say, "bah-bah-bah". She liked to blow raspberries. When she smiled, her eyes crinkled shut. When they told me she had died, I just put my head on my desk and cried. Hard.

Who knows why some die early and some live long lives? Not me; I don't know the answers to any big questions like that, and especially not today. I only know I'll miss this baby; this particular, charming, feisty, amusing little complicated human being. I'll carry on; this is not my own child and my grief is nothing compared to a parent's grief. I maintain perspective because I have many more clients and because I also have my own family to love and worry about. Life goes on.

But don't let anyone tell you nurses don't grieve.

mary

When the patient's mom has mental retardation

2006-04-11T12:01:00.000-04:00

One of the challenges I face as a case manager for children with special needs is mothers who have cognitive disabilities.

But something that doesn't occur to most other primary care givers is this:

You have those moms in your practice, too.

There isn't one kind of face or one set of symptoms by which you can recognize cognitive impairment in a caregiver. Most of us are used to thinking about impairments as something we assess in a patient; it is harder to get our minds around to recognizing it when it is subtly present in a caregiver.

Here are some hints for those of you who suspect there may be an underlying cognitive disability in a parent:

~~Repeatedly disregards written information
~~Cannot repeat instructions
~~Has difficulty generalizing information
~~Has difficulty prioritizing
~~Reads but does not comprehend material and/or cannot remember what is read
~~Always forgets appointments
~~Never learns how to negotiate her insurance requirements
~~Has difficulty recognizing her child's developmental milestones and anticipating them
~~Is not feeding her child properly

I find many primary and specialty practices who have seen the mothers who come to my attention-frequently seen them for many visits-and who have labeled these moms as "problem moms", and have never realized they, in fact, have mild mental retardation. They come to my attention as "non-compliant", which they are. But not intentionally.

Once I was called repeatedly to come see a mother whose child had a disability and mom was not taking her to needed appointments. I spoke to mom on the phone a couple times, and always when it came time to visit, she "forgot" or "had to work". Finally, I caught up with her at her child's bedside. The child had been admitted as "failure to thrive" and the hospital staff were on the point of reporting mom to CPS.

So I came in, introduced myself, and after about two minutes realized the problem.

Mom had mental retardation.

How did I know this, when it had been oblivious to other professionals? Because of familiarity with this population, largely, but also simply because I know there are moms with mental retardation out there slipping through the cracks and so I keep it in mind.

Because part of my assessment includes a family and social history I asked about two things that often get useful information: 1) do you get SSI? If so, what disability do you have? and 2) Tell me about your school days. Were you in any special classes for reading or other things?

This mom had found her own job, and was so proud of this! She was so proud of it, in fact, that she did not ever miss her scheduled days. Not ever. Even if the baby had another appointment. She could not prioritize this, because she had not been instructed in this directly. This may seem like something you shouldn't have to do: you shouldn't have to tell a mom how to prioritize these things. But you do.

She could parrot back the nursing staff's instructions on how to feed her baby, but five minutes later, could not repeat what was said (I know. I stayed and assessed this). She could read the instructions, but not follow them.

Before beginning to work with this mom on how to prioritize appointments and work schedules, etc, I asked the nurses to make one simple adjustment in home instructions. After making sure she had a VCR at home, I asked the nurses to videotape mom feeding her baby while the nurse gave instructions. Mom took this home, and watched it as she fed, until what was being done became second nature.

I wish I could tell you this story had a happy ending, but I can't. Mom disappeared from my follow-up; moved and left no address and I never found her again.

Hopefully, she showed up somewhere.

But maybe you might recognize one or two of the moms in your own practices from her description, and think about how to adapt your teaching or anticipatory guidance, how to make sure she knows how to feed and give meds, and how to refer her to your local resources when there are any available.

It is not a crime to have mild cognitive disability and be a mom. It is just hard to do it without significant help.

mary

This blog is apparently not about the nursing experience

2006-04-10T18:27:00.000-04:00

Huh.

Well, maybe it's not. Maybe it's really about health care continuums, and community care alternatives. About safety nets and access to care and the unmet needs of the uninsured. About what it looks like to case manage complex kids in America today.

Which I thought was "the nursing experience". At least, it's "the nursing experience" from my shoes.

My blog (which I'll admit is pretty new) has been declined by a "nursing blogs" blog; nicely, with a compliment about my writing, but reminding me that they are really looking for blogs that pertain to "the nursing experience".

Apparently the only "nursing experience" is acute inpatient hospital based. Or somehow excludes the kind of case management they pay an RN like me to do.

Well, I'm not going to quibble. I'm aware of this implicit bias because people sometimes ask me what I used to do "when" I was a nurse. Even other nurses ask me that. It can get irritating after awhile, but there you go. Once you're out from beside the bed, not only doesn't the public understand you are still a nurse doing nursing for a living, your own peers don't believe it either.

Of course, I do get off topic and post about my personal life. Or about what is interesting to me in the world of health care policy. You know, like...blogging. What bloggers do. What blogs were intended for, I thought. Maybe the decliners thought I verged off topic too much for a blog featuring "the nursing experience".

:-)

Anyway I thought I'd ask some of my readers to respond and tell me:

What is "the nursing experience"?

Looking forward to comments, whether you are a nurse or not.

mary (you know, the case manager who signs "RN" after her name and before her title)

NYT: "Siblings of Disabled Have Their Own Troubles"

2006-04-09T10:57:00.000-04:00

Some words of wisdom here in this short article from the NY Times, about the siblings of children with disabilities:

"These brothers and sisters will likely have the longest-lasting relationships of anyone, relationships easily in excess of 65 years," Mr. Meyer said. "They should be remembered at every turn."

It's not easy to know what to do all the time, when you are parenting. Add a child with special needs to the sibling mix in your house, and the chances of not meeting everyone's needs goes up pretty quickly. This article points out that much of the support in the (broadly speaking) disability community comes to parents and to people with disabilities themselves. There is a lot less attention to the emotional and support needs of siblings.

When Emily was born, my middle child was only 3 and a half. I made mistakes. I know: all moms make mistakes. But I wish I could go back and rethink some things.

Since she was so sick at birth, we had so many appointments with all kinds of people. We had so much new stuff to learn. But she had open heart surgery at 2 months of age, and then things settled down a bit.

We started going to an Early Intervention program weekly, meeting other parents and kids with Down syndrome. It was wonderful for my soul to meet so many other moms (and a few dads) and see so many beautiful children. I loved that weekly visit, and looked forward to it each week. It was the major source of comfort and support in my life, at that time.

But siblings were not allowed. And one day, I had to take my middle child with me, because I could not arrange babysitting.

And she was so sweet. So good. She couldn't come in. But outside the door of the Infant Program was a little playground with a slide and swings, and a bench. It was literally right outside the door, and I could see her every moment.

What I saw through the door: a curly headed four year old girl playing patiently alone on the swings and on the slide, and sitting on the bench talking to herself, swinging her legs back and forth. Occasionally she'd get up to peer through the glass of the door inside. She'd see me and wave, and go back. Go back outside the circle.

Here's what I should have done: I should have cancelled my Infant Program visit that week and stayed home. I should have heard the call of motherhood a little clearer that day.

Well, she assures me she has no lasting traumatic emotional impact of her solitary day on the swings outside the glass door. Truth be told, I don't think she remembers it.

I pray to God she doesn't remember it.

It is hard to raise children with complex needs; hard to not get confused, hard to keep your mind on what truly matters. But I think we need to focus on the siblings, too. They often get shunted to the side, out of necessity---but also, out of focus. Our focus, as parents.

Just a little story from this mom.

mary

The gift of risk

2006-04-07T08:39:00.000-04:00

Dream Mom has a wonderful post up today called "The Hole". I think it describes perfectly the value of allowing risk into the lives of children with complex needs.

No, I'm not talking about letting them push their wheelchairs out into rush hour traffic! I mean the ordinary risk of everyday life, such as the possibility of dirty shirts from playing down in the dirt.

We who love and care for children who require from us lots of delegated responsibility, particularly children with significant cognitive disability who require help with ordinary decision-making or self-care, tend to want to wrap them up in protective layers to keep them from harm. And that's fine most of the time. It keeps them safe and protected.

But we sometimes forget that we also have to let them have some element of risk, some decision-making, some experiences, or we are depriving them at the same time we protect them. We are taking away something in our effort to maintain safety, and that is the ordinary place of play and new sensory experiences in a child's life. That's how children learn about the world, even children with complex disorders and problems with cognitive functions.

Allowing risk is not something most moms like me necessarily want to do! In our vigilance to protect, with the fierce love of our children and an understanding of their vulnerability, we often have trouble letting go in even ordinary situations.

We have trouble letting them get down in the dirt to play.

How well I remember the first time I let Emily go into the McDonald's play area and go up into the tubes by herself. I know: those of you who haven't raised a child with significant and global developmental delays are probably scratching your heads about this big "event". But those of you raising kids like mine are smiling with a tear or two.

Of course, she would not come down for love, money, or french fries, and I had to send a young McDonald's counter person up there to get her down. And finally (the truth comes out!) get him to "assist" her down by, well~~~by pushing her down the slide.

She was thrilled with the whole darn thing.

Risk. Choice. Decisions. These are things our kids need.

Dream mom: I'm sorry he ate the dirt. But I'm not sorry he played in it!!

mary

Massachusetts mandates health insurance for all citizens

2006-04-05T07:22:00.000-04:00

BOSTON (AP) — Lawmakers overwhelmingly approved a bill Tuesday that would make Massachusetts the first state to require that all its citizens have some form of health insurance.

The plan — approved just 24 hours after the final details were released — would use a combination of financial incentives and penalties to dramatically expand access to health care over the next three years and extend coverage to the state's estimated 500,000 uninsured.

If all goes as planned, poor people will be offered free or heavily subsidized coverage; those who can afford insurance but refuse to get it will face increasing tax penalties until they obtain coverage; and those already insured will see a modest drop in their premiums.

The measure does not call for new taxes but would require businesses that do not offer insurance to pay a $295 annual fee per employee.

*****************
Well, very interesting and I mean that without sarcasm. I hope other states are watching this and seriously considering it. The combination of business mandates and personal responsibility to be insured or face financial penalties is unique.

mary

Tag! I'm it!

2006-04-03T19:23:00.000-04:00

I've been tagged by Kim at Emergiblog (after some shameless handraising by yours truly--true, true). So, if I understand the rules correctly, I have to provide answers to the following questions, then tag four more lucky bloggers. Here goes:

4 Jobs I Have Had In My Life:

--Counter girl at "Roy Rogers", complete with red hat and cowboy tie. I had to say, "Howdy pardner, may I serve you?" and "Happy trails!" (at least, when the boss was within hearing distance). And you wonder what motivated me to go to nursing school!

--Nursing assistant.

--Registered Nurse.

--Mom. (Mom counts!!! "Because I say so, that's why").

4 Movies I Could Watch Over and Over:

--Fellowship of the Ring.

--The Two Towers.

--The Return of the King.

--um.....are there any other movies?

4 Websites I Visit Regularly:

--Arts & Letters Daily. So far, the best web site for all kinds of artsy/lettery things, different articles by scholars and critics, different viewpoints, different subjects. OK, it's published by the Chronicle of Higher Education but they let regular old ordinary people like me read it, too. And for free, I might add.

--Short Sharp Science. A great blog from a great magazine, full of all the sorts of short sharp science-related reporting that New Scientist is known for.

--Kevin, M.D. I don't know how Dr. Kevin has time to blog all these things, but I admit to reading his blog daily. Often twice a day. I can't always tell what his platform is; I think that's a good thing. Dr. Kevin, please: do not increase your patient load, and risk your blog, OK?

--TheOneRing.net Reading Room. All right, look. A girl has to have a hobby. Mine is talking about Tolkien. If you are in any way interested in JRR Tolkien and enjoy talking about him and all sorts of related and interesting tangents, this is by far the best discussion board available. There are more highly knowledgeable contributors and worthwhile posts on this board than any other place on the web (or off the web, for that matter). A virtual Bird and Baby. I say no more.

4 of my Favorite Foods:

--really ripe mangoes

--homemade macaroni and cheese

--steamed Chesapeake Bay blue crabs, heavy on the Old Bay spicing

--my mom's chocolate cake

4 Places I Would Rather Be Right Now:

--Sitting on a porch somewhere in the Blue Ridge mountains of Virginia.

--In a pub in western Ireland.

--Somewhere the ocean is blue, warm, and placid.

--Middle Earth.

4 Most Wonderful Places I Have Been:

--The Blue Ridge mountains of Virginia.

--Miami Beach.

--The desert of New Mexico at sunset.

--Home.

4 Books I Could Read Over and Over:

--The Lord of the Rings

--O Pioneers!

--Bleak House

--To Kill a Mockingbird

4 Songs I Could Listen To Everyday:

--She Belongs to Me (Dylan)

--And It Stoned Me (Van Morrison)

--Boulder to Birmingham (Emmylou Harris)

--Long Ride Home (Patti Griffin)

4 Reasons I Blog:

--Because I have experiential knowledge in my field to share.

--Because I like to write.

--Because blogging is more personal than "listserving" or "message boarding".

--Because there are lots of other bloggers I read and I want to feel part of the extended "health care professionals" family while expressing my unique viewpoint.

4 People To Tag:

--Keith at Digital Doorway

--I'm hoping to follow Kim's lead and ask for volunteers! C'mon, it's fun. Raise that hand where I can see it!

Little Girls Gone

2006-04-03T11:45:00.000-04:00

A news release on a study appearing in the April issue of Pediatrics, the peer-reviewed, scientific journal of the American Academy of Pediatrics (AAP).

For Release: April 3, 2006, 12:01 am (ET)

CHICAGO - A new study establishes a strong connection between young adolescents' media diet and increased sexual intercourse.

The study, "Sexy Media Matters: Exposure to Sexual Content in Music, Movies, Television, and Magazines, Predicts Black and White Adolescents Sexual Behavior," found that white 12-14 year-olds who had a heavier sexual media diet were more than two times likely to have intercourse when 14-16 years old than those adolescents who had a lighter sexual media diet.

This relationship was not as significant for black teens, which seemed to be more influenced than their white peers by their parents' expectations and their friends' sexual behavior than by what they hear or see in the media.

But while one of the strongest risk factors for early sexual intercourse for both black and white teens was the perception that his or her peers were having sex, the study says that one of the strongest protective factors against early sexual behavior was clear parental communication about sex.

***************

I've worked for many years with lots and lots of young moms, some as young as 14 or 15. One as young as 13.

Many-very many-as young as 17.

I've been in their houses, to their social gatherings, to the places they hang. Seen the TVs that show all day long images of breathtaking depravity and violence from MTV and HBO, while toddlers climb on couches nearby and babies sleep in the chaos. Heard the violent, hate-filled, misogynist lyrics of the songs that play in the cars or boomboxes around which the children gather. Been to a city-sponsored "health" fair where a DJ blasted popular music from immense loudspeakers and the lyrics were about "do me, come on baby, do it hard" accompanied by passionate "uh, uh, uhs"....and the little ones were running around getting faces painted and eating healthy snacks from the WIC table. Stood in line at the grocery stores surrounded by images of women's breasts, butts and thighs--all the famous people who look like (let's face it) prostitutes, glorifying the look and promising: "look like me, strut like me, wear hardly any clothes, sing suggestive lyrics, simulate sex while you dance, moan, and rub up against the male dancers, and if not famous, you can at least be a real woman like me".

But it's not women who are buying this crap. It's little girls, our little girls, our lost generation of young teens succumbing to this horror.

I'm not a very large fan of censorship by government decree. I'm aware that each new generation acts in ways that scandalize the older generation. But it's really gone past the point of toleration. It's past time for a backlash against this kind of media, which harms our girls (and boys), giving them false understanding of human sexuality and pushing them beyond their years into risky behaviors before they have mature thoughts. Before they even are old enough to have mature thoughts. During the years they are learning how to think and negotiate life, they are learning to take all this glorified prostitution as somehow glamorous, somehow "real" and valuable.

Those of us working with children, especially those of us who are home-visitors, need to speak up, correct, role model, and advise moms to turn it down, turn it off, and don't buy it. How much younger can moms be moms than 13? Do we want to know the answer to that?

mary

(PS: Judging by the interesting Google searches that are referring people to this post, some web surfers are going to be MIGHTY MIGHTY disappointed! )

They had to do a study to tell us new moms are exhausted?

2006-04-01T18:57:00.000-05:00

I don't know why I find this so amusing.

At five weeks postpartum, a majority of new moms were fatigued, had breast discomfort and a decreased desire for sex, the study found.

Well, yeah.

:-)

mary

Charles Murray's Plan to Replace the Welfare State

2006-03-29T07:02:00.000-05:00

One of the difficult problems of being in the practice side of things (as opposed to the policy side) is the lack of credibility it brings to your arguments.

Why is this?

For instance, in reading Mr. Murray's fascinating proposal to just give every American $10,000.00 dollars a year in lieu of "social services", in order to address the inequities inherent in the welfare systems we have cobbled together, a person practicing in the field of pediatric special needs is wont to say: "hello! most of my kids spend that much in one month!" and go on about her business.

Of course, Mr. Murray and other policy types simply accuse practitioners like me of being beneficiaries ourselves of the welfare state, in the form of salaries and etc. So our voices (being the interested parties we are) don't count.

Well, probably because I'm a nurse and that guarantees a good amount of job security (if they close down the welfare state I'm pretty sure they'll still need nurses) I say nonsense! humbug! bah! and all sorts of other words too impolite to stoop to.

It's not the proposals to get rid of the "welfare state" per se to which I object. I also don't object to holding people responsible for what they do, nor in finding incentives to make otherwise capable people responsible for their own family's welfare.

It's the helpless, the ones who will never be able to assume that mantle, those who need our assistance to live daily lives of worth and dignity---it's those people who are disposable under any system like what Mr. Murray is being said to have proposed (I admit, I haven't read the book).

A place must be made for those who need help. A society without a way to take care of the truly needful is not my idea of utopia.

But, what do I know? I'm just a nurse employed by the welfare state.

mary

"Extreme Makeover": extremely picky

2006-03-28T08:06:00.000-05:00

OK now look: there's a show that purports to "help" people who are in need, by "extremely making over" (is that English?) their house. But they are getting really picky about what constitutes a tragedy and what kind of problem your family is encountering:

(AP) If your family has multiple children with Down Syndrome, a parent with skin cancer or was robbed in a home invasion, ABC's "Extreme Makeover: Home Edition" may be looking to build you a house.

Geez. I guess they only help those whose family story meets the "tragedy of the week" criteria. You'd think they'd evaluate each case on its merits.

Too boring, that.

mary

The Bellevue Literary Review

2006-03-27T20:20:00.000-05:00

The Bellevue Literary Review (BLR):

BLR is published by the Department of Medicine at New York University. We invite submissions of previously unpublished works of fiction, nonfiction, and poetry that touch upon relationships to the human body, illness, health and healing. We encourage creative interpretation of these themes.

There is a link above to the Spring 2006 edition with some of the writing available for free on the website, and some submission guidelines. There are some very talented medical writers out here in the blogosphere.

Just a thought.

mary

Normal gestational period=39 weeks?

2006-03-27T19:58:00.000-05:00

USA Today reports on a March of Dimes study which shows a decline in the average gestational age of newborns from 40 weeks to 39 weeks. This might lead some to wonder if our species is evolving; but study co-author Nancy Green doesn't think so. More likely we are just intervening early in more cases than ever (C-sections and inductions).

In addition, the percentage of babies born between 34-36 weeks is increasing.

Brave new world?

mary

Those da*#ed illegal aliens using up our tax dollars

2006-03-24T07:12:00.000-05:00

Well, put that title in quotation marks in your mind, would you please? I'm paraphrasing multiple conversations I hear all the time.

A recent discussion in the comments section on a blog I've been reading have me thinking again about this subject.

There appears to be a knee-jerk response by a certain segment of the American public (health professionals included) who, when given an example of compassionate care for an undocumented immigrant, state it's not fair:

"It's not fair to reward them for being here illegally".

"Why are they allowed to get medical treatment in the ER?"

"Why don't you all just turn them over to the Immigration folks?"

Without minimizing the problems implicit in large segments of folks entering the US illegally (there are problems, I acknowledge that), trying to control this by controlling access to health care is wrong. Doctors and nurses are ethically required to treat everyone who comes to them, and this includes major as well as minor criminals. We don't do background checks on you. We don't cut off your bloody clothes in the ER and see the knife wound, and then ask for your papers.

And we shouldn't.

In addition, public health measures that would attempt to weed out those who are here without legal status and not treat, are a danger to the rest of us. Tuberculosis treatment, for instance, would be ineffective if we only treated a certain portion of people in a community. An undocumented resident still spreads Tb to the rest of us, if untreated.

And a woman in labor is a woman in labor. Have we actually come to the point where the American public expects a hospital to toss her out on the street to deliver at the nearest 7-11 parking lot, because she can't prove her status among us?

Problems with illegal immigration should be handled at the point of entry (preventative measures, in other words) not at the point of necessity for health care. Health care is health care, and if we ourselves expect to be treated fairly regardless of our own age, race, income, or sexual background, then we make exclusionary rules with extreme care.

mary

Miracle Workers: TV show glosses

2006-03-24T06:54:00.000-05:00

On the bioethics.net blog, Caplan and McGee discuss the TV "reality" show Miracle Workers:

In reality, a quarter of us have either no health insurance or lousy coverage. No one has a doctor who isn't using much of the time once spent on patients talking to bureaucrats on the telephone to try and get approval for a prescription or a diagnostic test. A large number of us spend forever in emergency rooms to get basic care. There are many children who get no medical or dental care. The waiting times to see the doctor grow and grow.

I haven't seen the show and don't plan to. But there has been serious talk (and I mean serious to the point of looking up how make referrals to the show) in our office among my fellow care coordinators about getting some of our clients on the show.

I mean, perhaps it's not apparent to many other people, but by God if you're a working parent whose child is covered by your employer's insurance, this is no guarantee at all that you can find the care you need in twenty-first century America. Or afford the copays, either.

One pitiful example: your child needs a wheelchair. Your insurer has a $1000.00 cap on durable medical equipment, no exceptions.

OK, one more: your child needs hearing aids. Your insurer does not cover hearing aids.

We won't discuss the Americans who are working, paying taxes that support the American infrastructure (including Medicaid and TANF, etc), and have no insurance.

We are seriously thinking of asking them to swallow their pride, kiss their privacy goodbye, and call the show.

The state of modern American medicine.

mary

“Killing a defective infant is not morally equivalent to killing a person"

2006-03-18T09:10:00.000-05:00

It is frustratingly difficult to explain to "health professionals" the dangers implicit in "quality of life" discussions. Too often, what makes emotional sense to an individual speaker gets translated into policy or standards. Therefore, someone who feels his life would not be worth living if he were to become quadriplegic comes to feel this is a sensible, ordinary, commonplace assumption and therefore true.

Yet the judgment that an individual's quality of life is diminished by a condition (any condition)-which seems so sensible to so many-is in reality based on emotion, not sense. And policies based on emotional arguments about quality of life are dangerous to people who are perceived by others to have a poor (or absent) quality.

Then there is the other side of the mirror, in which quite logical arguments are made about issues like "personhood" and "quality of life factors" and the utilitarian sense of greater good. In this scenario, arguments that are logical are felt to be true. If it's logical, it is true is a very poor basis for making health policy.

Yet this is the realm of argument and theory expounded by the Great Father of Animal Rights and Practical Ethics, Peter Singer. Peter Singer, who has a protected pulpit from which to teach at Princeton University, and who makes logical arguments that killing defective babies is fine because 1) no baby is a person until 28 days of life and therefore no more a person than a fetus and 2) we abort fetuses for this reason; therefore, we should be allowed to kill non-persons for the same reason.

Oh, and by the way, after 28 days some humans never achieve personhood at all, so it is perfectly justifiable to get rid of them as well. He is ultra-careful to not say he advocates killing disabled people. He only advocates that it is perfectly fine to do so, not that we must or should.

A fine point upon which to wash one's hands of other people's actions based on one's preaching.

Now, people who oppose Singer are often told they misquote him, take him out of context, and reformat his arguments. Hogwash. Read Practical Ethics, and make of it what you will. The man who so passionately defends the rights of non-human animals (who is, in actuality, a major founder of the "Animal Rights" movement) considers some humans to be "non-persons" and therefore, disposable at will. He writes about this, he teaches it, and he is paid damn fine money to go around the country advocating it.

Now he is once again on the road, about to be paid lots of money (which he is of course donating to a vegan cause-I suppose on the theory that it is more worthwhile to spare cows than defective babies). I urge anyone practicing in the wide realm of "health" (and I keep putting that in quotes to be inclusive of just about anyone concerned with health care, practice or policy) to read something about Peter Singer. Think not only about his idiosyncratic points of view, but about the dangers of wide acceptance of these theories of personhood.

I've blogged about Singer before, but got little response. So, here's some more information. Please read some of these:

Rehabilitation: Disability Ethics Versus Peter Singer, Gary W. McPherson, LLD, Dick Sobsey, EdD (published in Arch Phys Med Rehabil Vol 84, August 2003)

Unspeakable Conversations, by Harriet McBryde Johnson

A Defense of Genocide, by Cal Montgomery

An Informational Protest, from The Center on Disability Rights and Community Inclusion

Not Dead Yet Fact Sheet: Peter Singer

All of you in health care, whatever your connection, whatever side of the bed you are standing on, are affecting the lives of vulnerable people daily. It's in your practice, it's in your thoughts, and it shows up in your judgments about disability and quality of life. Before you make the automatic assumption that cognitive disability = nonpersonhood, you really must think about where that assumption leads. This is not a non-valid "slippery slope" argument. This is humanity, the very definition of human, and therefore, it is us.

mary

I can't get no transportation

2006-03-16T06:53:00.000-05:00

Though I've tried, yes I've tried, and I've tried and I've tried, I can't get none-hey hey hey.

That's what I say.

Keith at Digital Doorway has a post about the trials of people at the mercy of Medicaid transportation.

People with Medicaid in my part of Virginia are, by and large (except for certain rare categories), placed in Managed Care Organizations (MCOs). These MCOs contract for transportation. People with Medicaid are entitled to transportation to and from medical appointments (to oversimplify). The problems are so numerous it is hard to know where to start. Read Keith's post for a good example.

Here's my latest example.

Mom with mild mental retardation living in the community with three children (you think this does not happen? There are lots of people with mild cognitive disability falling through the cracks of this society). Appropriately brought her child to the ER on Sunday for a fever and acute exacerbation of asthma. Given med changes and told to follow up with her pediatrician.

Appropriately calls on Monday morning and gets a doctor's appt for Weds morning.

Calls transportation, and is told "you need to call us five days in advance for a ride".

Calls me, her child's person-of-last-resort (case manager, in other words!). I call transportation and attempt to explain the inability to call five days in advance for an urgent appt.

"We show mom on the bus line (meaning they can tell from her address that she lives on a public transport route) so we cannot accept an appt less than 5 days in advance".

But, I say...

"No buts", they say.

There's always a but. I talk to the supervisor and we finally agree for transportation to pick her up in the morning.

Of course, in the morning, they don't show up. She appropriately calls the doctor's office to say her ride is late. OK, they say, just come when they get there.

Two hours later, they are still not there, despite calls to transportation central.

Meantime, the doctor's office calls her back to say the doctor won't be there after noon anyway.

She cancels.

When her mom gets home from work (the sole family transportation), she goes to the ER.

Why don't I transport her? Unlike Keith's program, I am not allowed to transport anyone (no matter where my heart is). Why didn't she take the bus? She had no voucher, and a bus fare for herself and three kids under ten: out of the question.

And she doesn't know how to get to the doctor's office anyway-what bus to take and how to transfer is beyond her ability.

And she doesn't have a car or a driver's license. Or gas money. Or parking money.

Now, before you get the impression that I think Medicaid owes people a way out of their own poor life choices, you are barking up the wrong tree. I'm just trying to show you the complexities we have built into the system we have devised to "help" people. It is complex to be poor in this country. It is even more complex to be poor and raising kids with multiple disabilities.

The next time an exacerbation of asthma shows up in your ER around 7pm, someone who could have been handled easily at the doctor's office, you might remember this post. It's not always as simple as it seems.

When I was 25-nursing circa 1979

2006-03-15T07:28:00.000-05:00

Very busy week for so many reasons, not the least of which is a milestone for my family: my oldest baby is 25 years old. I can hardly believe I have lived long enough to have a child who is a quarter century old (although she cringes when she hears me describe her age in terms of fractional centuries...).

When I was 25, the world was a different place, and I don't mean disco dancing and hair with wings. I was 25 in 1979 (do the math, if you're interested) and here's what it looked like:

~~Navy enlisted wife living and working thousands of miles away from home and family.
~~Half of the nursing staff: ditto above.
~~I worked in a mid-size community hospital on a med-surg floor that had a few telemetry beds.
~~I worked rotating shifts: days, evenings, and nights. Occasionally a night shift would be followed by a "day off" and then a day shift.
~~I became enamored of coffee in any form, due to above. An addiction that has followed me into middle age.
~~I wore a cap, white uniform, white hose, white socks.
~~Nurses were called by their last names. Period. If you were Jane Smith, everyone addressed you as "Smith". This was a Southern cultural norm for hospitals at the time; it was a token of respect. NO DOCTOR EVER addressed me by first name, after I called him (most were him!) by his full title. I called them "Dr. Smith" and they called me "Smith".
~~Evenings and nights, there was no ancillary staff. Nurses did all the 12 lead EKGs and breathing treatments. 12 lead EKGs were done by--gasp!--moving the leads around and then taking a six second strip of each lead placement. One walked around saying to oneself "first intercostal space right sternal border; first intercostal space left sternal border..." and praying no one needed an EKG because:
~~I had 21 patients on evenings, 42 on nights. On evenings, I was the "team leader" on one entire side of a nursing unit, with ten double rooms and one single. I had two LPNS and two nursing assistants for my team. On nights, I had one LPN and one assistant on each team. Me, 2 LPNs, and two assistants for 42 patients.
~~Need it be said no one sat in front of the telemetry monitors? When one got a chance, one picked up the strips that were piling all over the desk and floor from unanswered alarms, hoping not to see some horrible thing. Especially as that would mean pulling out the EKG machine with the little rubber squeezy lead things.
~~I started my own IVs. However, not all patients had IVs as they do now. Probably only ten out of 21. Nights, probably 20 out of 42.
~~Everyone needing a drip of IV meds of any kind (except antibiotics) went to ICU.
~~Post-op cholecystectomies went to ICU overnight.
~~Post-op open heart patients stayed five days in ICU.
~~I was younger than all the doctors.

I worked long enough in that hospital (almost five years, a long time for a Navy family to stay in one place!) to see many changes. Caps became optional a few years later. Staffing ratios were improved by adding RNs to each shift. The telemetry beds were moved to a new "subacute ICU", which I transferred to and which was exciting enough that I eventually moved to ICU. Acuity levels went up. People that used to stay five days post hysterectomy (for instance) stayed one or two.

Now, I am older than most of the doctors.

Things change.

I still like that last-name policy, though.

mary

"I have a family, too!"

2006-03-08T21:44:00.000-05:00

This short reflective article by Michael Owen at Ragged Edge Online brought home the power of family to me today. Family is just what so many generations of people with mental retardation missed out on. Many a sleepless night has found me tossing and turning and seeing pictures in my head of people who look a lot like one of the people in my own house, pacing the floor of a state hospital somewhere, with nothing to do and no one to love.

A few years ago there was a wonderful series of articles about an artist in Sacramento, a 76 year old woman named Irene Pinole. The first article was simply a story of her life, a life without family. She had been removed to a state institution at age 11, when some neighbors in her small town objected to her presence among them. Her younger siblings were told Irene had died in the institution, and were never able to find out any more specific information. Amazingly, her surviving family found her after reading the article.

65 years after their total separation, her sister came to see her. "Thank you for coming to see me", Irene said to her sister. No anger. No recriminations. No self-pity. Just love. Just happiness.

I think about these things a lot, when I try to understand this intense fear of Down syndrome that makes so many doctors counsel so many women to have prenatal tests. That makes it such a public health impetus to weed out these lives, the overwhelming majority of which are benign presences among us.

I sent a letter to the Sacramento Bee writer back when the articles appeared, and I saved it because...well, because this particular story about this particular life seems so illustrative to me: of the eugenics movement, of the waste of human potential implicit in institutionalization, of the false fear of people with mental retardation. But also because it illustrates the power of love.

Dear Ms. Hubert:

Your articles about Irene and her reunion with her sister were forwarded to me by a friend, all the way out here in Virginia Beach. Yes, both of us have children with Down syndrome. Their story will touch the heart of any ordinary human being. But it is especially, achingly touching to this mother's heart. In fact, I have been crying for several hours, it has come so close to breaking my heart.

I guess I am crying for many reasons. I am so happy that Irene's sister stepped forward, once she knew where Irene was. I am so thrilled for Irene. I am so thankful she had some loving caregivers over the years, who watched out for her. I am so sad, so overwhelmed with sadness, to see her small world, her few possessions, the little accumulated mementoes of three quarters of a century of American life, all in one small room in a shared house. Oh, I am just sad, for so many lost children, so many families who lost their babies to the state, and most simply, for the babies who lost their families.

I also have a little short person with Down syndrome in my house. Her name is Emily. She is fourteen. She is also four feet six, a very short person, even for someone with 47 chromosomes. Our life is not a fairy tale. She has many challenges, and certainly, her mom has many challenges to meet those Emily brings to our family.

But I look around her room, in her house, which she shares with two sisters and a dad and mom, and about 50 Barbies, and her ever-present CD player with the Kids Bop CDs, and the DVD player downstairs and I think...of Irene. Emily and Irene, and the difference that 75 years in society can bring. And I am not, of course, really talking about the material things; I know you understand that. I am talking about the evidence of ordinary American teenage life.

I don't have a way of getting in touch with Irene's sister or the rest of her family, and actually, would not like to intrude on them. But, if you have a way to be in touch with Olga Johnson, and think she would like to see this letter, I would appreciate your sending it to her. It is not always easy to know what to do or how to act, when newly confronted with a person with mental retardation, and I say this with the utmost respect for my daughter and others. It is the simple truth. But oh! they have so much love to share, they are so brimming with love of the highest nature. Love that expects nothing, and accepts a great deal. Love that surpasses understanding. Joy in simple human companionship that is very hard to find elsewhere.

I hope Olga and Irene can come to have some of that joy, delayed as it may be. Ms. Johnson, from Emily's mom, a handclasp across the miles. Good wishes to you both.
~~~~

P.S.: It appears that Irene is still painting and displaying her work at the Short Center South. Kudos, Irene.

mary

Grand Rounds and Josie King Foundation

2006-03-07T07:13:00.000-05:00

Grand Rounds is up at Emergiblog. Kim is at her usual level of great performance---check it out.

There is one link there that you absolutely must check out, whatever your role or roles in the health care system on either side (or sides) of the bed: The Josie King Patient Safety Program.

If you do nothing else in the blogosphere today, read that page.

mary

Disability is not an us-them issue

2006-03-05T19:10:00.000-05:00

Last week I had the interesting opportunity to speak on a local radio show at noon. Our PBS affiliate station runs a talk show from noon to one every day, with Fridays being reserved for an "ask the doctor" call in show. A local physician usually interviews one or more guests speaking on a particular health topic, and then they take phone calls from listeners.

Last week, the topic was living with a physical disability in our community. The featured interview was with a Paralympian from Virginia. The other speakers were a young man and a middle aged woman with spinal cord injuries who have various degrees of paralysis, and me-the token "health professional". They were stuck with me because they couldn't get one of our doctors at such short notice.

Several uncomfortable moments ensued, amusing or irritating depending on where the gauge is on your personal radical advocacy meter.

First, the host physician was noticeably uncomfortable discussing disability with disabled people. For example, she made the mistake of asking the paralympian if he played hockey before becoming a wheelchair athlete. Well, he said, he started out with some street hockey that his brother used to play with him and the neighbors, etc. Then she asked about his "accident" and how he got used to playing in a chair. OH, he said. Well, I have spina bifida, I've always used a chair.

Finally, at the end of the show she wanted to know from the two adults in wheelchairs what the "politically correct" term was to call them these days...how should we refer to them?

Which the young man in the wheelchair, representing our local Center for Independent Living, answered in a calm and dignified---if puzzled---manner. Personally, I was glad she didn't ask me. I could not have been dignified.

This show pointed out to me, once again, that we are still talking about "us" and "them". Now, this is helpful (or, it seems to be helpful from the outside looking in-I can't speak for the disability community) for disabled activists who want to claim being part of a distinctive subculture. For people who have been marginalized by mainstream society, this is surely the way to claim a distinctive voice based on unique viewpoints and common experience of being defined by their disability. Plus, the chance to create artistic and literary expressions from this viewpoint, and be proud of their unique perspective.

But it is not very helpful from the point of view of building accessible communities. To continue to talk as though there should be two different kinds of people-abled and disabled-negates the continuum that defines human function. We are all abled or disabled; we differ only in degree and kind.

Disability is simply a part of life. When we build communities in which everyone can get around, in which getting on a bus with a wheelchair is no big deal, in which all stores have adequate access and doorways which admit power chairs, then we will have communities which will be ready for us when we have to have access.

We don't grant people favors by making things accessible. We are not the beneficent almsgivers handing out tokens of "politically correct" curb cuts and Handi-rides. That is just illusion. There is nothing separating "us" and "them" but one split second in a car, or one tiny germ, one abnormal connective tissue gene or one cancer cell.

It is way past time to start seeing that creating us-them societies harms everyone.

mary

"Anybody know anything about this kid?"

2006-03-01T07:08:00.000-05:00

Children With Multiple Disabilities in the ER

Children with special health care needs (CSHCN) are at risk when they visit an emergency room. Yes, you read that sentence correctly: they are at risk when they visit an ER. This is particularly true for children with low-incidence conditions, but it's also the case for those with complicated disabilities or multiple conditions.

The AAP had an interesting little news report in 1999, when they launched the effort to encourage pediatricians to help families develop emergency care plans for CSHCN. There are two illustrative cases which show how the emergency logarithms and flowcharts for triage can interfere with children whose care requires out-of-the-ordinary treatment.

However, even those children who could benefit from ordinary emergency treatments are at risk from clinicians who don't understand the intricate complexities of their little individualized extra-ordinary lives. For example:

~~Children who are participating in clinical trials of medications or formulas and who come to the ER without their parent (for instance, when both have been in a car accident and the child comes to our pediatric facility).

~~Children awaiting congenital heart repairs, or who have had partial repairs (stage one but not subsequent stages, for instance).

~~Children with rare metabolic disorders.

~~Children with common incidence disabilities (such as cerebral palsy or Down syndrome) but who have multiple complications, many doctors, much equipment, frequent illnesses.

The AAP and the ACEP (American College of Emergency Physicians) recommend that all parents have emergency plans written down for just such events. Because it is not easy-for ER staff or parent-to arrive in a crowded and busy ER with a sick and unusual child with a long complicated history and multiple specialists who each treat a portion of the body or a particular symptom.

What I often see happen is the ER staff discounts mom's worries because she can't make a diagnosis of what is wrong. Yes, you also did read that sentence correctly! Staff somehow expect not only that mom can tell them exactly what treatments and medications the child is receiving, what body systems are affected, the entire medical and surgical history of the child, and which specialists are currently seeing him, but also "what's wrong".

I realize there are exceptions, and parents don't always know an emergency from an acute illness or possible simple complication. However, most parents become acute observers of their complicated children and know when something "just isn't right". When they tell you their kid with a G-tube "sometimes throws up, but not like this, not this much", or that their child with partial heart repair "sometimes looks a little blue but I've never seen his mouth this color before"-it would be a good idea to listen.

Meantime, I try to get all my families to fill out emergency cards at the least, with meds and doctor names, etc. Lots of my parents have care notebooks, with histories, surgery dates, medications, doctor phone numbers, etc. This helps-if they bring it!

However, more than one of my clients' moms have had ER staff raise their eyebrows when she pulls out the care notebook: instead of a prepared mom she becomes an "overinvolved parent", a control freak, and someone who doesn't know her place.

Well, I suggest ER staff understand that these parents are caring for children who, if they were in-patient, would require professional nursing services. They have tube feeds, IV ports, trachs, oxygen, suctioning, bladder cathing, etc. The mom with the care notebook is your ally, not a control freak. Not an "overinvolved parent". She has had to learn nursing by on the job training, and so lacks any fundamental theory of illness. She only has one patient, but believe me, she knows that particular patient pretty well.

It would be a good idea for ERs to stock the emergency plans from AAP/ACEP, or something similar, and hand out to parents as they are leaving the ER if they have not come in with one. Make your life easier the next time they visit. Because, if he lives in your community, that CSHCN will be visiting you again!

mary

"Quality of life" and people with cognitive disability

2006-02-24T19:20:00.000-05:00

There's a series of posts up at Neonatal Doc's blog that discuss "quality of life" and babies with conditions known to cause significant cognitive disability, such as trisomy 13 and holoprosencephaly. The posts begin with Inappropriate and continue (so far) through Futility.

I'm not picking on Neonatal Doc; he (or she?) is certainly not the first doctor to automatically equate "cognitive disability" with "poor quality of life". Nor, unfortunately, the last.

However, as part of today's Futility post, Doc mentions that previous commenters have raised the issue of using quality of life as some kind of guide in making treatment decisions. Doc then goes on to say:

"It is my understanding of the laws in the U.S., though, that we are not allowed to use poor quality of life as a reason for withholding or withdrawing care. We cannot discriminate against people with impairments; withholding life support would constitute discrimination".

It appears that Doc is trying to say that it is illegal to withhold treatment based on a diagnosed condition (in other words, to use a particular diagnosis as the sole reason to withhold treatment). But that is not what Doc says. Doc that it would be discriminatory to withhold treatment from people with a "poor quality of life", then uses the example of people with "impairments". Doc, in other words, has equated "impairment" with "poor quality of life". He uses one to illustrate the other.

"Quality of life" discussions per se--as part of the decision making around end of life or treatment decisions--are not against the law. It is not discrimination to withhold life support from people with "impairments" on an individual basis.

This is not the same as using the "impairment" as the reason to withhold care. It is "discrimination" to pre-judge that people with "impairments", on the basis of that impairment--as a class--do not deserve life support or other treatments. It is, in other words, discriminatory to equate "impairment" with "poor quality of life".

Lots of people do this. That includes doctors and other health care professionals. That doesn't make it right.

Doc then discusses the issue of withholding care because it is "futile", and admits that often this terminology is simply a cover for the truth: the care is withheld because of "poor quality of life". As Doc explains:

"Eighty or ninety per cent of babies with Trisomy 13 or 18 die by age one year. They often die because they simply stop breathing; the respiratory center of their brain, responsible for regulating their breathing, doesn't work properly. They can also die because of other birth defects, such as serious heart problems. If a normal child were to stop breathing, we would begin support with a ventilator. This is not usually offered Trisomy 13 or 18 patients. We say we don't offer it because it would be futile; the baby would eventually die from another problem caused by the Trisomy. But the truth is, many of the Trisomy 13 and 18 children if put on a ventilator, if their heart defect were repaired, and a feeding tube placed, and anti-reflux surgery done, could possibly live for years. It would not, in my opinion, be a life of high quality (and I am not advocating it be done.) Most of these patients cannot even smile, let alone walk or talk or indicate their desires, but they would be alive. So when we withhold life support from them, are we really doing it because it would be futile, or because the quality of life would be so poor?"

Or, I might ask, are you doing it because you are prejudiced and cannot imagine such a life as worthy of life? You may not even realize this prejudice; it may be so automatic--this correlation in your mind of cognitive impairment and "poor quality of life"--that you can't separate the two concepts.

Try.

It's the information they obtain from medical providers--including neonatologists--that families use to make critical decisions in the early days of a baby's life. It's one thing to give honest appraisals of probable outcomes. It's one thing to give your explanation of Trisomy 13 or holoprosencephaly, including current life-expectancy data. It's even one thing to give your honest opinion about treatment, if you are directly asked.

It's another to pre-judge that a particular chromosomal anomaly will cause such a poor quality of life that the affected child is better off dead.

Doc apparently believes children with trisomy 13 or 18 don't have a high enough "quality of life" to benefit from life-prolonging procedures. I believe the families in this support group (for example) do not agree. Surely there is room to individualize decisions of such extreme importance, and not rule out the possibility of treatments for any baby?

50 years ago they weren't repairing esophogeal atresia in babies with Trisomy 21. 30 years ago babies with trisomy 21 weren't authorized for open heart repairs in some hospitals--excluded because they had "poor quality of life". Today, this would not happen and would be seen as wrong. Yet it's not the babies themselves who changed, it's society and medical science. Things change. Withholding treatment based on preconceived notions rather than individual decisions about individual babies leaves out a lot of options.

Life, for one thing.

mary, who is, after all, "Emily's mom"

Those non-compliant parents

2006-02-23T18:00:00.000-05:00

I am on a personal mission to ban the use of the term "non-compliance" except in those instances when someone is under a court order or other legally required agreement to comply with something. Boy, we professionals are simply entirely too free with that term; we throw it around judgmentally too often before we have the facts.

True story:

A parent referred to my program with a very complex child with multiple disabilities. Reason for referral: non-compliance with medical treatments. In addition to his regular pediatrician, this child sees:

~~physical medicine
~~neurology
~~cardiology
~~gastroenterology
~~pediatric surgery (G-tube and post bowel surgery)
~~ophthalmology
~~pulmonology
~~PT
~~OT for "feeding therapy"
~~wheelchair clinic

In addition, his mother speaks no English, has no car, and only occasionally a phone. And...no Medicaid. Needs O2, feeding pump, dressings, AFOs...and more.

Now, I'm not going to bore you with all the details of a case manager's life, getting all this under control using interpreters and getting him on Medicaid, teaching mom how to call for transportation, make a schedule, what all this "stuff" means, how to get his durable medical equipment delivered, how to care for it, and all the other things I do all day. Mom and I have sort of gotten things together over the last couple of months. The medical and related hospital providers are now happy with my compliant mother.

On Monday, I received a call from the child's school, where he is enrolled in a special education program. Seems he has been missing an awful lot of school, and mom has been telling them "he's been going to the doctors"-which, with so many absences, they find hard to believe.

Mom is now, in short, non-compliant from an educator's point of view.

Just a little window on the world of parents raising complex children with special health care needs.

mary

Why no "Advance for Doctors"?

2006-02-20T20:01:00.000-05:00

There's a ubiquitous magazine for "health care professionals" out there in the US, published by "regions", with different content for different kinds of professionals. I myself get the "Advance for Nurses" for Maryland, Virginia and Delaware, which I assume is the same magazine with targeted ads for my geographical area. It's free, paid for apparently by advertisement revenue alone.

Some of the content is surprisingly good, actually. It's almost embarrassing to admit that.

There is an Advance for several different professions, including audiologists, nurses, imaging, respiratory care, nurse practitioners, and physician assistants. There is even an Advance for "Providers of Post Acute Care".

There is, however, no Advance for doctors.

Too bad, because you all are missing the nifty "Advance Healthcare Shop for Gear, Gadgets and Gifts"! You, too, could "stand out from the crowd" with "unique neck ties" and "badge holders". Or the unisex tee with the logo: "Nursing is not just a duty, but a privilege". How about a camisole top with shelf bra, featuring "RN" heart logo? And the tee with the confusing motto: "Nursing: The Science Of Medicine, The Art Of Caring" (can't we have the science, too?).

Not to mention the Betty Boop scrubs and socks.

Now seriously. There is a thoughtful post over at Emergiblog about just this subject: the deplorable way some nurses dress at work. All right, I'm an old curmudgeon. But I tell you ladies (and gentlemen, you're not excused either), you can't be taken seriously as a professional if you dress in Betty Boop socks. Sorry. This is not a "generation" thing. This is not "old baby boomer vs. Young Generation".

If you want to be taken seriously, dress seriously. Maybe it really is time to bring back caps.

Mine's in some box or other around here somewhere...

:-)

mary

The gender gap in science

2006-02-18T19:10:00.000-05:00

Here's an interesting article by Peter Lawrence of the Medical Research Council Laboratory of Molecular Biology, Cambridge, about the gender gap in scientific fields:

Among biomedical students in Europe and in the United States, there are similar numbers of males and females, suggesting perhaps that this subject is equally well suited to both sexes. But with higher and higher rank, the proportion of women falls inexorably—full professors are only about 10% female. Women drop out steadily, and many of them have demonstrated high ability. There is plenty of evidence for similar trends in different branches of science. For example, at the Laboratory of Molecular Biology in Cambridge, UK, where I work, the gender ratio of graduate students is currently 43 male to 35 female, yet the ratio of group leaders is 56 male to 6 female.

Lawrence cites Simon Baron-Cohen's research into gender differences, and describes some average characteristics of the female brain and the male brain, which he believes are strongly dependent on biology and genetics:

Baron-Cohen presents evidence that males on average are biologically predisposed to systemise, to analyse, and to be more forgetful of others, while females on average are innately designed to empathise, to communicate, and to care for others. Males tend to think narrowly and obsess, while females think broadly, taking into account balancing arguments. Classifying individuals in general terms, he concludes that among men, about 60% have a male brain, 20% have a balanced brain, and 20% have a female brain. Women show the inverse figures, with some 60% having a female brain.

Apparently, Science considered this article for several months but declined to publish it, causing a minor "eruption" over the issue in the scientific community (or so the Daily Telegraph says).

I am not sure of the research into all this, so obviously not sure how correct all the assumptions are. But I am persuaded not only by this article but by life experience to think that women and men-while equally valuable and intelligent-are different, think differently, and value different kinds of human relationships.

Maybe this explains some of the overwhelmingly female presence in nursing and elementary education. Often we see this explained as cultural bias, but I wonder how much might simply be due to "the female brain"? That is, men may still rule out nursing and elementary education due to some perceived cultural bias, but women are probably often attracted to nursing and elementary education because of something implicit in those fields.

mary

Mr. Bush's fantastical HSA

2006-02-17T06:46:00.000-05:00

"DUBLIN, Ohio, Feb. 15 — President Bush campaigned for his plan to expand health savings accounts on Wednesday here at the headquarters of the Wendy's fast-food chain, declaring that his proposals were not just for the wealthy and would help some of the 45 million Americans who remain uninsured.

In an hourlong speech in one of the most politically troublesome states for Republicans in this year's midterm elections, Mr. Bush took on critics of his plan, who say that poor or underemployed people cannot afford the accounts.

"It's kind of basically saying, 'If you're not making a lot of money, you can't make decisions for yourself,' " Mr. Bush told Wendy's employees assembled in the company's lobby. "That's kind of a Washington attitude, isn't it. 'We'll decide for you, you can't figure it out yourself.' I think a lot of folks here at Wendy's would argue that point of view is just simply backwards and not true."

Under current law, people can open health savings accounts only if they first enroll in high-deductible health insurance plans to cover catastrophic costs, which require an individual to pay at least the first $1,050 of annual medical bills..."

Don't people at Wendy's tend to make minimum wage? I'm trying to figure out how any of them could fund an HSA...

Maybe I'm missing something. Those of us in practice in the field are often accused of misunderstanding the issues.

mary

The baby goes to foster care

2006-02-16T06:38:00.000-05:00

The little complicated baby I wrote about in December has gone to foster care. How short and sweet that sentence looks on the page.

For the last week I have been awake in the still hours of early morning, long before my alarm. In the dark, in the solitude of my quiet house, surrounded by my sleeping family, I think about the baby. Is she frightened in her new place, with its new smells and noises and big new crib? Has she gotten used to her foster mom's voice and arms and can she find comfort when she is restless and little and missing the familiar sound of home?

The baby was removed because of concerns about parental ability to assure adequate medical care: missed appointments, poor decision making, refusing to answer the door when home health knocked. She was not removed because no one loved her. People surely loved her. In the midst of the chaos that defined her home, people held her and rocked her and kissed her little feet and hands.

That's not enough. Love is not enough.

It is very easy and entirely correct to enact laws making reporting suspected abuse and neglect mandatory for health-care providers. That I had a hand in the eventual removal of a loved baby from an incompetent parent is entirely within the realm of possibility for all such reporting. It goes with the territory. I don't make the decision to remove: that is the judge's responsibility. But I accept that my initial call set the decision in motion, that I have responsibility and believe me, it is weighing deeply on my soul. I understand that I did the right thing. I know I made the ethical decision, and acted in good faith and I have discussed this all with my coworkers and with the social workers.

And God.

The baby is safe and in a very good foster home. The foster mom will make all her appointments and keep a close eye on her weight and allow the home health team in to see her. She'll get her PT and her feeding therapies, and get to the cardiologist, and get enrolled in special ed preschool. And all those things on my checklist that need to get done, will get done.

And mom will attend her required parenting classes, and get court-ordered therapy, and get a job. And find a place to live. And clean up her act in general. Or that is my hope, anyway.

But out there right now, probably awake in her own bed in the still hours of early morning, a mom is not holding her baby. A baby she loved but could not care for-but nevertheless a baby who misses mom's arms as much as mom's arms miss that baby.

I ask God to let me start to feel what my head tells me: it was the right thing to do.

mary

Grand Rounds

2006-02-14T07:19:00.000-05:00

Grand Rounds is a weekly compilation of "medical" (or health related) blogs. It is a nifty way to see lots of new and experienced bloggers talking about all kinds of things that influence health. In particular, it is a window on medical (and allied health) practice. There are multiple thoughtful practitioners out there, many of them blogging, some of them being featured weekly on Grand Rounds.

Anyway, check it out, readers. I know you are there, I check my statcounter every day!

:-)

mary

Abandoned witnessing walls

2006-02-13T06:55:00.000-05:00

Opacity is a site devoted to "urban exploration". Let me say I am not a particular fan of trespassing, and know nothing about urban exploration except what is found at this web site. Opacity came up on a Google search for "Pennhurst".

However, the picture galleries on this web site are the most truly fascinating thing I have seen for a long, long time. So many of the ruins the photographer has explored are state hospitals for the insane, or the "feeble minded". So much was left behind in some of the abandoned hospitals that it leaves the impression of instant abandonment-as though the inmates simply vanished into thin air. There are crates full of baby bottles left at Fuller State Hospital, and Chris and Tyrone left their art projects behind when they went...where?

The iron lungs abandoned at Lindon State Hospital, still bearing hand written messages to nursing staff who, by the time the last lung was in use, must have become unused to such technology. Where did the people go, who once spent their days in the lungs?

The cribs and abandoned toys of Pennhurst.

I don't know which photograph haunts me the most.

mary

Think you're not biased? Think again.

2006-02-10T19:40:00.000-05:00

Project Implicit offers some fascinating research on implicit bias, including some demonstration tests. Think you are not prejudiced about black/white, able/disabled, old/young, etc? Try some tests. See how you do.

Personally, I have a feeling it is more important to acknowledge you have biases and strive to neutralize pre-judgements than to try to pretend you don't have biases at all.

mary

New Liberian President breaks rape taboo

2006-02-10T07:19:00.000-05:00

This is a brave woman.

“After being sworn in on Monday, Mrs Johnson-Sirleaf stood up and said something that galvanised her audience:

"I know of the struggle because I have been a part of it," she said. "I recall the inhumanity of confinement, the terror of attempted rape."

Violence against women and girls is endemic in most societies (which is a sad thing to say, being a woman and mother of three daughters). It is a particularly appalling consequence of war and conflict around the globe

~~~

From the World Health Organization:

Violence Against Women and HIV/AIDS: Critical Intersections: Sexual violence in conflict settings and the risk of HIV

Why focus on violence against women in conflict settings and HIV?

"The militia at the barriers said they would protect me, but instead they kept me and raped me in their homes. One militia member would keep me for two or three days and then another would choose me… I managed to flee Kigali and when I returned, I learnt that my husband had been killed." (Survivor of the Rwandan genocide, HIV positive woman from Kigali)

In conflict situations, women and girls are at greatly increased risk of physical and sexual violence. Many women and girls are subjected to rape including gang rape, forced marriages with enemy soldiers, sexual slavery, and other forms of violence (being forced to witness others being raped, mutilations, etc.). Many have fled their homes, have lost their families and livelihoods, and may have little or no access to health care. All these factors create conditions in which women and girls’ vulnerability to HIV is disproportionately increased.

Violence against women and girls has been a feature of all recent conflicts, the ongoing one in the Darfur region of Sudan as well as in the former Yugoslavia, Democratic Republic of Congo, Rwanda, Sierra Leone, Liberia, northern Uganda, and Chechnya (Russian Federation). In many of these conflicts, some of which have been regarded as ethnic cleansing, rape has been and is used as a deliberate strategy to brutalize and humiliate civilians and as a weapon of war or political power.

For more information on violence against women, see this WHO page.

~~~

“More and more of the world is being sucked into a desolate moral vacuum”, according to a UNICEF report:

Women and girls in particular experience conflict and displacement in different ways from men because of the gender division of roles and responsibilities.

Increasingly, modern warfare is wreaking havoc on the lives of women and girls, and on the health and educational services that are key to family and community survival and development.

"Nothing was spared, held sacred or protected", says a new United Nations report by Graça Machel, the Secretary-General's Expert on the Impact of Armed Conflict on Children. "More and more of the world is being sucked into a desolate moral vacuum" in which civilians rather than soldiers are the main targets in war.

~~~

This kind of endemic violence has far-reaching consequences, and shapes the future of the world we all inhabit, changes societies, families and communities in many harmful ways, and makes a living hell for countless numbers of victims every minute of every day here on earth. The CDC describes the consequences of sexual violence here.

~~~

For helpful links regarding the serious public health issue for all of us (individual victims or not), there is a good FAQ page up at the INFO Project website(a project of the Johns Hopkins Bloomberg School of Public Health).

~~~

It’s not “them”. It’s not “over there”. Violence against women shapes families and communities forever. It’s us it affects, us it diminishes, us it hurts. It’s us-regardless of gender, race, or socioeconomic class. Until the violence stops, we will all continue to be victims.

mary

Life with Emily

2006-02-07T21:20:00.000-05:00

Emily (girl of a thousand diagnoses and 47, XX, +21) had a medical emergency this morning at 4 a.m.

Let me rephrase that: Emily thought she had a medical emergency at 4 a.m.

In the dark before dawn she came in to shake me awake. "Mom!" she said, "Mom! Wake up! There's something wrong with me!".

Ordinarily words to make a mom's blood run cold. But I have lived with Emily for a while.

"What's wrong with you, Em?", I said blearily.

"I'm sneezing!" she replied seriously.

I just sighed and rubbed my hand over my face.

This evening, after a long LONG day and a late meeting, I came home to find Emily waiting for me with this news:

"I must have to stay home tomorrow, Mom, because I have been sneezing again and you know what that does to me!"

I don't have a clue, really. I didn't let on, though.

:-)

mary

What draws a nurse to this job?

2006-02-04T18:57:00.000-05:00

What draws a nurse like Luwana to this job, and why does she stay? How does she avoid burnout?

While some nurses are drawn to this job because there’s reason to believe this sort of work can make a long-term difference, what keeps them in it, I think, is the other nurses.
~~~~~Q&A "Children of the Bayou" (New Yorker Magazine online)

Very interesting article in this month's New Yorker describing a "nurse visitor" program in Louisiana. This particular program is intended for young, first time moms and it aims to both improve children's outcomes and decrease child abuse. Like most programs it is hit or miss at times, but there is evidence it is making a difference. I recommend this article if you are interested in seeing a working "home visitor" program that appears to be helping at least some young moms and babies.

Also if you would like a factual and non-sensational description of what it's like to visit impoverished homes, with the attendant drug abuse and crime on the periphery-in the midst of which live little babies and developing children, the future of America.

Whether or not you have access to the article, the Q&A is available at the New Yorker web site. The dedication and stick-to-it spirit of a fellow nurse can always bring a gleam of pride to my eye.

The article describes a weekly team meeting held by the nurses, in which they describe new and current clients. Like most home-based or community-based case managers, these nurses must get pretty lonely driving around poor backroads by themselves. I think the author has hit on an important factor in why they stay: each other. The support and understanding that another "home-visitor" can give (not to mention the shared perspective) is so vital. Only another person in the same kind of unique situation of counselor-care manager-teacher-role model can hear the concurrent respect and despair when you describe a particular situation, for one thing.

And call you on the carpet with authority, when they don't hear the respect. And mean it.

mary

Balancing federal budget on the backs of the poor

2006-02-02T07:38:00.000-05:00

Let's hear it for the US Congress, who has decided that so many poor people are benefiting from Medicaid that it must be cut. Our pockets are being assaulted too heavily by these poor and disabled citizens and by GOD something must be done.

So they have now given states the right to cut services and eligibility; to require copayments from people who already can't pay their bills because "this will reduce utilization" (watch out, all you ERs); to decimate EPSDT requirements; to offer the poor "health savings plans" (can you figure yours out? If so, can you come explain them to my impoverished families who have never had any practice budgeting money? Thanks.). In short, they are holding poor people responsible for using the entitlement they were granted and actually used. Fancy that.

But in Congress-speak, they have said that while they are cutting Medicaid, they aren't really cutting Medicaid. They are leaving it up to the states to decide what to do.

So let's see: my state (Virginia) is already notoriously stingy in benefits to poor and disabled people. Don't believe me, check out any state ranking for expenditures and/or services to this population. So stingy, in fact, that when a call comes into my program from an out of state family with a child whose special health care needs are being met adequately in their current state of residence, we tell them don't! Don't move to Virginia.

I cannot imagine Virginia seeing the opportunity to cut benefits and not doing so.

Well, I don't have any easy answers, but I know this from experience: if you push poor and disabled people out of Medicaid and primary care, they will simply show up in your ERs as uninsured poor people. We have poor people who get sick in America. This should be a shock to someone?

We are going to pay for helping poor people with health care problems one way or another, and decreasing use of primary preventative care by removing the ability to pay for it, seems counterintuitive to me.

But what do I know?

The other alternative might be to criminalize being poor in America, and get these darn people off the street and into...somewhere. Or shoot them all. That would certainly solve the Medicaid budget crisis.

Maybe I'll bring this up to the President one day, when he's vacationing on his ranch.

mary

Delivering sad news: how to talk to parents

2006-02-01T18:48:00.000-05:00

Every pediatric pratitioner at one time or another has to tell parents bad news about their beloved child. It goes with the territory. But just accepting the ethical responsibility of it doesn't make the doing of it any easier. Since I've worked in the "special needs" area for many years, I've seen and been told about this experience many times. Based on my experience on both sides of the bed (nurse and parent) I can give you a few hints.

First, I'll tell you how not to do it.

Neurologist standing at clinic exam table: Well, Mr. and Mrs. Smith, we have all the test results. Your son unfortunately has Lennox-Gastaut. Have you ever heard of that? Well, it is not very good. It will never get better and will probably get worse. There is no very good treatment at this time.

Please make a follow up appointment with my nurse. Let's see him again in three months.

Now, the better way:

1) Sit down, if possible. Attempt to be on some kind of equal footing with the human beings with whom you are about to discuss something painful. Not only will the parents see you as more compassionate, you will remind yourself of your own essential humanity.

2) Be honest. Truth is always better than prevarication. Never say more than you know. But say what you know.

3) Say, "I don't know" when you, in fact, don't. Don't bluff. This applies to both diagnosis and prognosis.

4) At all times remember that you are there to deliver a diagnosis or prognosis. Your aim is to be truthful in doing so. Your aim is not to destroy hopes or dreams. This may be a side effect of what you have to say, but it is not your goal. It is not why you are having the discussion.

5) So don't destroy hopes or dreams on purpose. They are not your hopes or dreams. You may not agree with them. You may think them unrealistic. Short of harm to the child in question, if the dreams are not interfering with your care, they are not your business. There may come a time when you will have to address directly those unrealistic hopes and dreams. If immediate action is needed, the time may be concurrent with the bad news you have just delivered. If not, the discussion can wait.

6) No one has unlimited time to spend with patients anymore, but allow parents time to react and ask questions. Be prepared ahead of time for the diagnoses that are most common to your area of practice. Be especially prepared to refer parents to local or national groups offering support and guidance. Offer to reschedule an appointment on another day to review their thoughts and what they have learned, and answer questions that will come up.

7) Remember we live in the Internet Age. Parents are going to look up what you tell them, by and large. This is not a reflection on you; stop taking it personally.

8) Be prepared for your own shortcomings and mistakes. We are none of us perfect. We are all human. Practice in talking to parents about sad things only makes the doing of it easier; it doesn't make the sadness of it go away. There isn't any perfect way to deliver sad news. But there are better ways.

mary

U.S. primary care near collapse, physicians warn

2006-02-01T07:14:00.000-05:00

An alarming thought from the American College of Physicians. The report released January 30, entitled: The Impending Collapse of Primary Care Medicine and Its Implications for the State of the Nation’s Health Care, should be a concern to everyone looking for primary care for themselves or their clients.

The accompanying proposal guidelines: The Advanced Medical Home: A Patient-Centered, Physician-Guided Model of Health Care are also found on the same page.

For the population of Children and Youth with Special Health Care Needs (CYSHCN) the push has been on for several years to encourage "Medical Homes" and care for these complex children in the community, and in theory, this would be the best way to care for them. But I know in practice it is already hard to find primary care pediatricians for some of my clients (since everything depends on the almighty HMO or MCO). I imagine all of them leaving pediatric care at 21 to enter into adult primary care and increase the problems of an already crashing medical care system.

I have to tip my hat at the struggling primary care docs (and advanced practice nurses, too, who are doing a lot of this primary care in my area). When my little clients have a good PCP, their quality of life is markedly improved. Here's my prayer for a solution and my hope we can avert the looming crisis.

mary

ah-HAH! Nursing blogs review part two

2006-01-28T10:56:00.000-05:00

Well, I have been reading lots of blogs lately. See, I put links to some over there on the left hand side?

There are lots of blogs by nurses out there in the blogosphere (remember when we used to call it cyberspace? I digress). Lots of mediocore ones, some really pathetically bad ones, and some wonderful ones. I put three of the best I've found so far in the "Interesting blogs-health related" links on the left (don't worry, those of you not featured, I can't possibly have read but a miniscule number of the total available yet...).

Digital Doorway is written by a nurse who describes himself as "work[ing] with the Latino community in a medium-sized New England city, caring for individuals with HIV/AIDS, diabetes, addiction, and sundry illnesses related to lives rife with trauma and the intergenerational effects of poverty". He also teaches nursing at a Community College. I surmise by reading the story of his day at work that somewhere in his job description are the words "case management". His post of January 27th. perfectly describes what it is like to be invited into a family's life by way of your job. Every nurse engaged in community care which includes home visiting, can relate to sitting on the dirty floor in a bedroom in a house defined (in many ways) by poverty.

Emergiblog is "the life and times" of an "Emergency Department RN"; well-written, interesting, and managing to simultaneously explain it just like it is with humor while maintaining compassion for those whose situations are described. Wow. Of course, the wonderful graphics and pictures of Cherry Ames don't hurt. You have no idea how great it was to find another nurse who confesses to the world that she started on her nursing journey thanks to Cherry. Me too!

Here is a Cherry Ames' page, BTW, for the rest of you fans.

Finally, stop by Coffee and Conversation in a Smoky Room, which describes the ~~trauma~~ experience of student nursing pretty well. It seems only yesterday I was in the lobby on the first day of clinical, wearing my beautiful starched white cap and apron and thinking "I must be crazy, what have I done? Good God, why did I ever think I could be a nurse, for Heaven's sake?".

30 years ago.

:-)

mary

"The public is always rightfully enraged when one of these awful deaths occurs"

2006-01-27T07:04:00.000-05:00

Sometimes sentences just make such cogent statements that it's impossible not to quote them as titles.

This sentence just screams to me that we, "the public", fully expect these deaths to recur, since we are "always rightfully enraged when one" does occur.

mary

Childhood heart repairs may not last

2006-01-25T06:05:00.000-05:00

Open-heart surgery for babies and young children didn't become common until the 1970s. Before then, only a quarter of "blue babies" and other infants born with complex heart defects lived beyond a year. Now, more than 95 percent of these "miracle babies" will grow up, living near-normal lives for many years.

Only recently have enough of the early survivors reached adulthood for doctors to notice a disturbing trend: Starting about 20 years after childhood surgery, the risk for some serious problems -- irregular heartbeats, enlarged hearts, heart failure, occasionally even sudden death -- begins to rise among people who had complex defects repaired.

There is a problem in general with young adults transferring from pediatric specialty care to adult specialty care. It's particularly acute for those with complex disorders that are more frequently treated by pediatric specialists than by their adult counterparts, but it extends to primary care as well.

Any hints from your institutions or neighborhoods?

mary

Why we like cute

2006-01-23T18:45:00.000-05:00

"...Scientists who study the evolution of visual signaling have identified a wide and still expanding assortment of features and behaviors that make something look cute: bright forward-facing eyes set low on a big round face, a pair of big round ears, floppy limbs and a side-to-side, teeter-totter gait, among many others..."

This article in the NY Times, reporting on recent research into what makes things cute and why we like it so much also reveals:

"...New studies suggest that cute images stimulate the same pleasure centers of the brain aroused by sex, a good meal or psychoactive drugs like cocaine..."

Which explains a lot. Surely.

Now seriously. Think about babies.

"...Human babies have unusually large heads because humans have unusually large brains. Their heads are round because their brains continue to grow throughout the first months of life, and the plates of the skull stay flexible and unfused to accommodate the development. Baby eyes and ears are situated comparatively far down the face and skull, and only later migrate upward in proportion to the development of bones in the cheek and jaw areas...."

and

"... On starting to walk, toddlers struggle continuously to balance themselves between left foot and right, and so the toddler gait consists as much of lateral movement as of any forward momentum..."

C'mon, aren't you thinking "awww" to yourself right now?

I was going to put a damper on things by musing about the implications for those babies who don't meet standard "cuteness" definitions, but I think I'll just drop that hint and depart.

mary

woo-wee! Nursing blogs review part one

2006-01-21T13:53:00.000-05:00

I've just spent several hours reviewing nursing blogs with the help of Google (hopefully, without government supervision of same, as some of the blogs are a trifle, um, explicit). Things I've learned so far:

1) lots of nurses don't like nursing much.
2) new nurses think old nurses suck and await the day we all retire with profound hopeful glee.
3) old nurses think new nurses suck and lament the wave of the future when they retire and the new crew takes over the ship.
4) some nurses use baby words to describe excreta. It's interesting, but unnerving.
5) excreta of all kinds and body fluids in general figure prominently on many nursing blogs. Leading one to wonder which came first: the attraction to nursing of people interested in excreta and body fluids, or the frequent exposure to same resulting in profound preoccupation in off-duty hours with writing about it all?

I have not yet come to any conclusions. I actually went looking at nursing blogs to find some to put in a permanent link section here, such as seen on many medical blogs (and parenthetically: how come all health-related blogs regardless of content or authorship are lumped under the category "medical"?). Sadly, although there are several nurses blogging with whom I would be proud to share a night-shift cup of coffee, there are many more who are, well, embarrassing. This need to describe in graphic detail the horrible incident of the body-fluid-of-the-day and the play-by-play details of how you made it through the shift seem so much wasted space to me.

I mean, other nurses already know all about it. So does the general public, who are the providers of the body-fluids you clean up and then run home to blog about. This public show of sardonic, jaded, burnt-out, "let's see who can be the most graphic and use the most vulgarity" rather petty storytelling doesn't show us to our best advantage, does it?

But of course, what do I know, old-timer that I am. :-)

Stay tuned for part two, I know there are good blogs out there to link to!!! Any suggestions welcome, by the way.

mary

Children Born in 2001: First Statistics

2006-01-20T07:00:00.000-05:00

Very interesting, the changing face of America.

These stats are from the Early Childhood Longitudinal Study, Birth Cohort (ECLS-B), a nationally representative sample of the nearly 4 million children born in the United States in the year 2001 being conducted by the National Center for Education Statistics. To quote: "During the first wave of the study, 10,688 parents provided information and 10,221 children were directly assessed."

Randomly (well, not true, selected by me!) stats include:

51 percent were boys and 49 percent were girls;

54 percent were White, non-Hispanic; 14 percent were Black, non-Hispanic; 26 percent were Hispanic; 3 percent were Asian/Pacific Islander, non-Hispanic; 1 percent were American Indian, non-Hispanic; and 4 percent were multiracial, non-Hispanic;

23 percent were living in families whose household income was below the poverty threshold;

Forty-five percent of children living below the poverty threshold lived in households with no father present, while 12 percent of children living at or above the poverty threshold lived in households without a father;

Black children (58 percent) were more likely than White children (10 percent), Hispanic children (20 percent), or Asian children (6 percent) to live in a household with no father present.

These kids will be in charge in America in 2040---or in jail. We can watch it happen, or we can try to intervene.

Isn't that the decision society faces, brought down to simplest level: who is the mote, who is the light?

mary

"Bringing Vincent Home"

2006-01-19T07:20:00.000-05:00

This article perfectly describes the everyday frustrations of trying to navigate systems purportedly there to "help" individuals with significant cognitive impairment.

As both a mom and a "case manager", I could underline all the salient points: it's too scattered, too confusing (if these two caregivers-a pediatric nurse specialist and a tenured professor of health policy can't do it, who can?), and too subject to error.

Medicaid obviously remains the life-sustaining key to most services for people like Vincent.

Do you wonder why some of us moms-and case managers-are wondering how much more Congress will cut Medicaid under the belief that it is too lavish?

There are lots of Vincents out there. They are living substandard lives under the radar of your health care and disability "services", and when their elderly parents die, someone somewhere is going to be trying to figure out how to bring Vincent home.

Read this article.

mary

The baby is better and this and that

2006-01-18T17:20:00.000-05:00

I've been sick with the flu or something. People always say they have had "the flu" when they are sick with some unknown thing, and hey! who am I to knock tradition? My unknown "flu" was a headache-sleepy-low fever-general malaise thing, actually. Of course, being a nurse I truly felt my headache for twenty four hours indicated I probably had either some rare disease or perhaps a tumor (nurses rarely have simple headaches), and was all set to call my doctor and get an MRI ordered when miraculously it stopped.

So, must have been "the flu" after all. Or a miracle. Maybe both; I don't suppose they are mutually exclusive.

Anyway, I have been feeling blah and old and somewhat discouraged and wondering if I really make any difference to any living soul, which I suppose is typical post-New Year's Resolution Blues (you know, when it occurs to you that all those resolutions you make each year are just so much malarkey, even if you truly believed for even one second you would attempt to stick to them).

And Congress is messing with Medicaid. And one of my little clients was removed to foster care today. And my Spanish-speaking mom wants to know if the police pull her over and she can't produce a driver's license will they call Immigration and if so, who will take her multi-disabled child if she is deported? And it takes five months to get a wheelchair for a child...did you know that? That is the average time in our wheelchair clinic for new wheelchairs, because first you get the doctor's order, then you make an appointment to get a fitting, then they try to get it authorized by the insurance company, then the insurance company denies it, then they have to get a letter of "medical necessity" from the very same doctor who ordered it in the first place (i.e. said it was medically necessary and so I am ordering it), then it gets approved, then it goes to the medical equipment company who orders the stuff from a vendor, and then FINALLY it comes in. Meantime mom walks around with the baby in a stroller which causes every doctor, nurse, and therapist who sees her to say, "you know, mom, you really need to think about getting a wheelchair for your child"...

And why do we call all our client's mothers "mom"? And is it patronizing? And why can't I stop?

Anyway, the baby I wrote about below, the little trooper in PICU, is getting better. She is extubated, and tolerating a bit of po feeding. Her g-tube is shot for some reason, and they have quit replacing it for right now and are NG feeding her. But I saw her sitting up in a little swing at bedside and she had a big smile for me.

That's enough for today. I think there's meaning in here somewhere-in my life, I mean, not this rambling post.

:-)

mary

How to tell friends your new baby has a disability

2006-01-04T10:37:00.000-05:00

Interesting discussion on Red State M-word about a couple whose baby was born with Down syndrome, and the struggle they had over how to announce this. It's good to see physicians and other medical professionals talking about this issue, which is generally only a conversation that parents have with one another later on! "How did you tell?" is a common topic at gatherings of parents whose kids have Down syndrome, anyway.

I'd be interested in how people view this on both sides of the announcements, by the way.

If you were once a new parent of a baby who was diagnosed at birth with a disabling condition, how did you (or did you) announce this?

If you are not such a parent, what do you think? Would it be helpful to you to know this about a friend or family member's new baby? Is it necessary?

mary

"A dazzling series of noninvasive screening options for trisomy 21"

2005-12-29T09:26:00.000-05:00

This editorial by Jane Brody does not even pretend to be about anything else but the "dazzling" opportunity early prenatal testing offers to mothers "who would consider abortion" to ensure their fetuses don't have the "serious abnormality" of trisomy 21. Such testing can now be done "with great accuracy in the first trimester, before anyone other than the woman, her partner and her physician need know that she is pregnant".

Which, as Ms. Brody reports, is "indeed exciting findings".

She reports on the editorial by Dr. Joe Leigh Simpson of Baylor which appeared in the New England Journal of Medicine last month, discussing this breathtaking new advance in ~~eugenics~~ science, which Dr. Simpson refers to as "a dazzling series of noninvasive screening options for trisomy 21".

I suppose I am raising one of the last generation of children with Down syndrome who will appear in normal population concentrations, since apparently they are targetted for extinction in the coming years. Because after all, currently the only way to get rid of the "abnormality" is to get rid of the fetus.

How many generations will it take until moms who choose to give birth to children with Down syndrome are viewed as entirely wacky and not deserving of support?

Not to mention what it will be like to be one of say 12,000, rather than 1 of 800 (which is the normal rate of Down syndrome to live births).

Brave new world.

mary

Saruman and Stalin both start with "S"...

2005-12-23T07:23:00.000-05:00

Interesting tidbit on the Bioethics.net blog referring to this article about Stalin and his plan to create half-human/half-chimpanzee warriors:

"A SECRET plan to create hordes of half-man half-ape super-warriors to conquer the rest of world has been uncovered in Moscow.

If successful, the plan would have seen humans and chimpanzees cross-breeding to create a new race of "living war machines", which ignored pain and fear and which thrived on hardship."

It didn't work with the technology available to Stalin, but with the expanding knowledge of cellular mechanics and etc, one might pause to ponder the future.

Makes half-orcian Uruk-Hai look plausible. Does life imitate art, or art, life, one wonders?

mary

A foot on both sides of the bed

2005-12-19T21:16:00.000-05:00

One of my favorite clients is sick, very sick. I have lots of complicated clients, since I'm a case manager for children with special health care needs only. And this little one is no exception: complicated, congenitally different, precariously clinging to life at the best of times. This is not the best of times.

I go up to visit her at bedside in PICU, sometimes standing next to mom but often just alone, silently watching. I'm praying, really, but maybe I don't want everyone to know. Even though my office is in the children's hospital, I'm community-based and don't get to PICU too often (thank goodness). So none of these nurses know what to make of me, and give me sort of wondering looks. Probably they think I'm a social worker, but I'm used to that. Sometimes I try to impress them and throw in a medical term or two, but it's been a long time since I took care of central lines or suctioned an ETT. Probably it shows.

But what they don't really know about me, most of them, is that I'm also a mom and I also have a very complicated child who once laid in PICU for awhile, recovering from something. And my baby looked an awful lot like this baby. Same almond eyes. Same wispy blond curls. I know there's an inevitable "quality of life" discussion coming up soon, one in which I will, as usual, hold a minority viewpoint.

It's hard to have a foot on both sides of the bed. I say my prayers, and go back to work.

mary

Lest we forget: Pennhurst, Willowbrook, et al

2005-12-16T00:10:00.000-05:00

A post on the down-syndrome listserve got me searching for information on Willowbrook and Pennhurst. Not familiar with those names? They were large state institutions for the mentally retarded at one time. Within my lifetime. In fact, Willowbrook did not become a news item until 1972, the year I graduated from high school, (which I know was ancient days to my children but is still not that long ago).

Click on the title above to see some archival video from a 1968 TV expose of Pennhurst. No matter how you feel about the subsequent long and contentious lawsuit and settlement, I defy you not to be moved by the video.

Very interesting that they use a bible verse and picture of a bible to talk about our need to care for society's forgotten children. Couldn't get away with that nowadays on national or local news...but I digress.

mary

Words and response

2005-12-15T07:17:00.000-05:00

I would like to clear up a misconception from my previous post. The physician who blogs at Red State M-word did send me email in reponse to my original email to him. It was unfortunately spam-filtered out by my over-zealous work email account. I gave the impression he had not replied, which is incorrect and unfair.

In fact, he has emailed me in quite thoughtful ways since the post, and there is a discussion at his blog, if you are interested. I hope if you are reading what I write, you are interested in the concept of the continued use of words meaning "retard" as an insult.

One commenter wants to know why, if I am so concerned about the use of the word in the term "red state moron", I don't take on all the other pundits who use the word to refer to those in red states. I don't know...where does my energy simply die? It's one thing to discuss this with an obviously caring physician who may not have thought previously about the use of the term. It's another to take on pseudo-news blogs and talk-show blabberheads.

Don't you think?

mary

What the heck is political correctness anyway?

2005-12-14T06:52:00.000-05:00

How can an ordinary, everyday person-me, for instance-differentiate between language that is offensive and language that is not offensive, when the same word is used in both examples? For example, the word "moron". "Moron", of course, means retarded. I don't think there is any other meaning for the word in English. It used to have an actual medical-terminology use, in the olden days before almost any of us were born. It was a subcategory of mental retardation, at one time, when it was vitally important for some reason to differentiate between people with IQs of 40 vs. IQs of 20.

For some reason, that was once vitally important.

And a "moron" was a person with a relatively higher IQ than an "idiot" or an "imbecile".

Yet this term has no current medical meaning; it is, simply put, now only used as an insult. Period. It is used in place of "retard", "idiot", or "imbecile". Often preceeded by the superflous "stupid", (which could be read as a comment on the speaker's own language abilities, but I digress).

And lately, or in the last couple of years, heard often in the same phrase as "red state", as in "red state moron". It's related to the news-pundits' use of red and blue to color the states who vote Republican and Democratic in national elections, red being Republican and blue, Democratic. The phrase apparently means something close to "redneck", or perhaps knee-jerk reactionary. It's hard to keep the insults straight, and I prefer to read and avoid talk-radio, so I may not be totally clear on the latest uses of this...term.

So, back to wondering about "political correctness":

There is a medical blog often cited (in some circles) and a recent host for "Grand Rounds" (a weekly round-up of healthcare related blogs) called "Red State Moron". I suppose the title is an attempt to be ironic and satirical.

It is ironic; it is written by an obstetrician who also practices maternal-fetal medicine. He has, in fact, written several posts based on ultrasound images of babies who will be born-not to put to fine a point upon it-meeting the old-fashioned definition of that insulting and irritating and infuriatingly awful word "moron".

Since the blog's author did not respond to my email asking him how a practicing physician who will have to counsel couples prenatally diagnosed with a fetus whose birth will result in a child with intellectual impairment can use the word "moron" in the title of his blog, I thought I'd ask some of you:

Is my reaction simply "political correctness" run rampant?

mary ("Emily's mom", after all)

Same Singer, same song

2005-12-06T20:44:00.000-05:00

It's been awhile since I thought much about Peter Singer. I'd prefer not to think about Peter Singer and his brand of utilitarianism, but there it is. It doesn't go away.

The link above is to a current article on his website discussing pretty succinctly his views on infanticide for disabled babies. Oh, he is careful to point out he is not saying disabled babies are not worthwhile. He is quite logical.

In fact, he appears to say infanticide is OK because it is logical.

Anyway, he then argues a slippery slope (it appears to me to be a slippery slope, but you know, I don't have any advanced degrees) that, if disabled people argue that disability is only a "difference", there will be no need for governmental and pharmaceutical and other support. Well, I suggest you read it for yourself, because thinking about Peter Singer gives me an intense headache and my stomach starts to get all quivery.

People often accuse Singer opponents of misquoting and misconstruing Singer. On the contrary. There it is. Read it yourself.

Please.

mary

"What Your Doctor is Reading"

2005-12-03T08:22:00.000-05:00

Click on the above title to look at a monthly summary of current medical literature aimed at the non-medical reading public.

It's interesting to note November's report includes a review of the early pre-natal tests for Down syndrome. Of course, there is the usual statement that early testing is important not just for abortion decisions, but to "prepare" moms for the fact that their child will be disabled, if they decide to continue the pregnancy.

The fact is that this latter option is simply included so that the speaker (be it the authors of the original study report or the author of the review-or both) can say that, of course, this early testing is not aimed at increasing the abortion rate for trisomy 21. The speakers would not want to be accused of having a hidden agenda, or presenting their information in such a way that they appear to be counseling prenatal testing as a darn good thing because it leads to earlier abortions.

However, there are, in this one little review, four sentences explaining how important this is for moms who want to abort early. And one sentence explaining how finding out early can help "prepare" for the birth.

Just an interesting observation.

mary

Who owns my hope?

2005-12-03T00:27:00.000-05:00

This week I attended our hospital's annual bioethics day. Our featured speaker was Chris Feudtner, MD, PhD, MPH. Dr. Feudtner is a pediatrician at Children's Hospital of Philadelphia. He specializes in bereavement, end of life issues, and palliative care. In addition to Dr. Feudtner we had two panels made up of parents and patients, including a mother whose son died recently, from cancer, at the age of three.

I was deeply moved not only by the panelists' stories, but also by Dr. Feudtner's kind and calm discussion of very complex issues that have to do with the dance that occurs when families of sick children meet the medical team around the bedside for decision-making. The topic was "Hope: Help or Hindrance", and while immediately the parent in me was already armed for combat regarding that last word in the title, I am glad I removed my weapons at the door and listened. Because Dr. Feudtner talked about listening, about how to sit and talk with families about hope, and how to come up with "alternate hopes" for situations that are so difficult they can't really be simply described.

Too often the medical team begins talking to parents who must receive a bad diagnosis or prognosis as though the aim of the conversation that is about to occur-the goal for the conversation itself-is to manage hope instead of tell the truth. As though it were somehow vitally important to simultaneously tell the truth about the medical condition and best-guess of prognosis, and destroy any hopeful response at the same time.

And "who owns that hope?" is what I am always tempted to respond. Whose hope is it, and when did it become yours to mold and shape?

From my point of view, it's the team's responsibility to give truthful information in difficult situations, and to be therapeutic in relationship with the parent as part of the professional duty to that parent, since children are not experiencing illness or disability in isolation but in family. It may be your responsibility to help the parent work through what kind of hopes to have, and how to have them, and how to change them as time goes on. But it's not your responsibility to destroy them.

You don't own them, after all.

mary

House balances budget on the backs of children

2005-11-28T21:27:00.000-05:00

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?

2005-11-27T11:27:00.000-05:00

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?

2005-11-25T21:19:00.000-05:00

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

2005-11-24T20:09:00.000-05:00

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

2005-11-24T20:05:00.000-05:00

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?

2005-11-23T19:58:00.000-05:00

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