The disconnect between the Medical Community and the Disability Community

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.

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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

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

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

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"?

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?

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

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?

(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