Tuesday, June 27, 2006

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

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.


Sunday, June 25, 2006

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

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.


Thursday, June 22, 2006

Nurses in Nontraditional Roles

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.


Tuesday, June 20, 2006

Peter Singer not being misquoted

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:


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?



Tuesday, June 13, 2006

They're hurting and killing our children

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.