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Child forced to leave school due to genetic predisposition for cystic fibrosis


MercyA
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From Wired: "A few weeks into sixth grade, Colman Chadam had to leave school because of his DNA. The situation, odd as it may sound, played out like this. Colman has genetic markers for cystic fibrosis, and kids with the inherited lung disease can’t be near each other because they’re vulnerable to contagious infections. Two siblings with cystic fibrosis also attended Colman’s middle school in Palo Alto, California in 2012. So Colman was out, even though he didn’t actually have the disease, according to a lawsuit that his parents filed against the school district. The allegation? Genetic discrimination."

 

Full story here. The part that really makes me angry? Colman's teachers felt free to discuss the results of his genetic testing with other parents during parent-teacher conferences. Unbelievable!

Edited by MercyA
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It looks like this occurred in 2012, is there more recent information on the court case?

 

http://abcnews.go.com/blogs/health/2012/10/19/boy-ordered-to-transfer-schools-for-carrying-cystic-fibrosis-gene/

 

The Wired article was published two days ago, and it says, "...the wheels of the legal system are still turning. When the family first sued the school district in 2013, a district court dismissed the case. The Chadams appeal the dismissal to the federal Ninth Circuit court in January. The Departments of Justice and Education have also written a brief in support of the Chadam’s case, which suggests the federal government has taken an interest in the case and its outcome."

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The medical information should never have been shared, and any decision needed to be made with medical professionals involved, who surely would have realized that one kid didn't actually have CF.

 

Having said that, the question of how to handle students who actually have CF is complicated.  If having 2 kids in the same class or school puts both at risk, or puts one at risk (if one kid already has a bacteria that the other kid is looking to avoid), what's the fair thing.  Let the kid who came first stay, and find another appropriate placement for the other?  Play "chicken" by assigning both to the class and see which parent caves and withdraws their kid?  Withhold info and put both kids at risk?

 

The closest similar situation I can think of is kids with life threatening dog allergies, and kids with service dogs.  They can't be in the same class either. 

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The Wired article was published two days ago, and it says, "...the wheels of the legal system are still turning. When the family first sued the school district in 2013, a district court dismissed the case. The Chadams appeal the dismissal to the federal Ninth Circuit court in January. The Departments of Justice and Education have also written a brief in support of the Chadam’s case, which suggests the federal government has taken an interest in the case and its outcome."

Thank you, I missed the brief, I'll have to break out my laptop to read it.
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I went to school with a girl who had CF.  She passed away at age 20.  So far as I know, her parents didn't make any particular demands about her treatment, although it was a private school and they were very wealthy, so they could have, and I just wasn't aware.  I do think she wore a mask at school at times, but that's about it.  

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This is really confusing.  I never knew that kids who had CF couldn't be around other kids with CF.  Do the parents of the other children (listed as siblings) keep them separate from each other??  I'm really really confused.  Or maybe I just have poor reading comprehension tonight.

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This is really confusing. I never knew that kids who had CF couldn't be around other kids with CF. Do the parents of the other children (listed as siblings) keep them separate from each other?? I'm really really confused. Or maybe I just have poor reading comprehension tonight.

I was confused at reading that as well. I know a family with three kids who have CF.

 

Now maybe the thought is that if one succumbs to an infection it is likely their sibling would be similarly vulnerable?

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This is really confusing.  I never knew that kids who had CF couldn't be around other kids with CF.  Do the parents of the other children (listed as siblings) keep them separate from each other??  I'm really really confused.  Or maybe I just have poor reading comprehension tonight.

 

See this article from the Cystic Fibrosis Foundation.

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I think it may be impossible to prevent siblings with CF from sharing bacteria, but that doesn't mean you want a child with CF catching bacteria from non-sibling CF kids as well.

 

My kid was hospitalized on the respiratory ward of our children's hospital, where many of the patients have CF. I know that they took special precautions such as having kids confined to rooms, and making siblings with CF who were visiting hospitalized siblings, wear masks the whole time they were on the floor.

 

Here is a link spelling out precautions.

 

https://www.cff.org/Living-with-CF/Germs-and-Staying-Healthy/How-Can-You-Avoid-Germs/How-Can-You-Reduce-the-Risk-of-Cross-Infection-/

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I know a family with three (of five) kids with CF.  Their oldest son died when I was in high school, after picking up an infection from another boy with CF he met at a summer camp.

 

Kids with CF are vulnerable to many types of infections that other kids brush off easily.  It is impossible for siblings to be isolated from each other, but had the new boy actually had CF, it might have been catastrophic if the school had not informed the other parents.

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If a child has special medical needs, the school is required to accommodate them. They cannot do that by infringing on the rights of another student. Someone was really stupid.

If you read the link someone posted about suggested precautions for schools with multiple kids with CF, they involve seriously limiting the freedoms of both kids. Middle school is a time when kids crave their freedom, and in my experience with kids with serious medical issues, control is particularly precious to them.

 

So to tell a middle school kid who has previously had some freedom in the school environment that they can no longer use whatever bathroom or water fountain, or sit where they like at lunch, or go see their counselor when they're having a rough time, or have their medical treatments in the privacy of the nurses office, or attend basketball games in the gym, or school dances, without coordinating with someone, would be really hard.

 

And then on top of that to live with the knowledge that you could follow all those restrictions, and still die because you crossed paths during a fire drill or one of you (impulsive preteens) made a mistake.

 

I think that there are no easy answers here.

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i'm getting a 404 on this page.

 

 

My brother has CF and I've never heard of these restrictions. Very strange to me! I want to read this article because it doesn't make sense that all germs wouldn't be as much of a concern. He went to public school and wasn't even diagnosed til he was 11 or 12.

 

There are different forms of CF, too--We know so much more now than when my brother was small. I am out of the loop as to latest information. His kind is not as severe, but definitely got very severe.

 

(He had a lung transplant and is 58yo in April--so some people can have a much longer lifespan than previously thought, just fwiw.)

 

Anyway, thanks for the info and the discussion.

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I used to work for the CF Foundation and if I remember correctly there is a specific type of pneumonia that can be easily passed between CF patients. Once they have it, it's either nearly impossible or impossible to get rid of and is very dangerous. Before they can share hospital rooms the doctors will test for it and I think a lot of camps for CF patients were closed or modified because of this.

 

It's been a long time since I worked there but that's what I remember.

 

I just went looking for the name of the pneumonia and I guess it's more broad--it's easier for bacteria to get stuck in the sticky mucus in their lungs.

 

http://www.cfkids.org.uk/what-is-cystic-fibrosis.php

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It looks like certain bugs infect a CF person that just don't infect people without CF.  So, if one CF has the bug, they pass it to the other CF person, but not to anyone else. 

​And at all costs, you want to avoid those bugs if you can.  They're deadly.

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Kids with CF are vulnerable to many types of infections that other kids brush off easily.  It is impossible for siblings to be isolated from each other, but had the new boy actually had CF, it might have been catastrophic if the school had not informed the other parents.

 

The school can inform parents without identifying the specific children involved. Keep in mind, both sets of parents would need to know that there is another child with CF in the school. Who the children are is irrelevant.

 

Schools are required to accommodate and accommodate they should. Assuming "first come, first served" is not an appropriate way to approach accommodations. For example, it might be better from an educational perspective for the first child to leave the school than the second child - maybe there's another school closer to their home, or a magnet school they would like to be in. Accommodations should serve both the physical and educational needs of the child. 

 

Also, everyone needs to keep in mind that there are very few circumstances where you are required to disclose medical information. Just because you know something doesn't mean you have to tell anyone. Of course, you would be foolish not to disclose medical information to your own medical team, but for others disclosure can be approached on a "need to know" basis. 

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I'm not sure that this set of requirements can always be accomodated.

 

Accommodation can include home tutors if necessary. The question isn't whether or not someone can be accommodated, it is how are they to be accommodated. 

Edited by TechWife
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i'm getting a 404 on this page.

 

 

My brother has CF and I've never heard of these restrictions. Very strange to me! I want to read this article because it doesn't make sense that all germs wouldn't be as much of a concern. He went to public school and wasn't even diagnosed til he was 11 or 12.

 

There are different forms of CF, too--We know so much more now than when my brother was small. I am out of the loop as to latest information. His kind is not as severe, but definitely got very severe.

 

(He had a lung transplant and is 58yo in April--so some people can have a much longer lifespan than previously thought, just fwiw.)

 

Anyway, thanks for the info and the discussion.

You have to add the closing parentheses and the .pdf that aren't highlighted in the link.

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But he didn't actually have CF, right? A genetic predisposition is not the same as actually having the disease. That's the whole point, isn't it?

I don't think that's the point at all. Even if he had CF, forcing him out was not the right choice.

Edited by Kathryn
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I'm not sure that this set of requirements can always be accomodated.

This. 

There doesn't seem to be a "win/win" option here. Somebody had to be moved and that somebody's parents were going to be upset. That "upset" is understandable, but I'm not sure what else could have been done if moving classrooms wasn't a possibility.

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I used to work for the CF Foundation and if I remember correctly there is a specific type of pneumonia that can be easily passed between CF patients. Once they have it, it's either nearly impossible or impossible to get rid of and is very dangerous. Before they can share hospital rooms the doctors will test for it and I think a lot of camps for CF patients were closed or modified because of this.

 

It's been a long time since I worked there but that's what I remember.

 

I just went looking for the name of the pneumonia and I guess it's more broad--it's easier for bacteria to get stuck in the sticky mucus in their lungs.

 

http://www.cfkids.org.uk/what-is-cystic-fibrosis.php

I know all this - what I'm not seeing is why it's such a big deal at a school but I've never heard of it for CF families and sibling groups? Is it just something not talked about? Or is the bacteria really only dangerous from someone you aren't related to (which makes zero sense)?

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In making accommodations, you get into the idea of least restrictive environment. I have an child who had an IEP for "otherwise health impaired." It was always the understanding that if that child's health prevented her from attending school, she would receive home-based instruction. That would be the least restrictive environment for her, given her health concerns. As the parent of a child with chronic and life-threatening illnesses, I would never expect that another child be kicked out of school to accommodate my child's health problems. In my opinion, if a family feels their child can't safely attend school, then it's on them to seek alternatives (bearing in mind that the school district is obligated to provide HBI). It is not on some other child to stop attending. You can't just target other kids, declare them a health risk, and kick them out. I don't understand the mentality of the parents of the kids with CF who apparently thought that was a reasonable course of action.

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I know all this - what I'm not seeing is why it's such a big deal at a school but I've never heard of it for CF families and sibling groups? Is it just something not talked about? Or is the bacteria really only dangerous from someone you aren't related to (which makes zero sense)?

 

I don't have a clue what I am talking about, but here is how it sounds from what I have read.

 

From the link Garga posted:

"Cross-infection is an issue of considerable

concern for the CF community. Those with

cystic fibrosis attract different bacteria or ‘bugs’

that grow in their lungs. These ‘bugs’ are rarely

harmful to those who do not have CF but may

be harmful to others who have cystic fibrosis

but who do not have the same ‘bugs’."

 

In the article it also talks about picking up bugs from the environment.  So, to me it sounds like it is common for CF patients to pick up a bug in daily life and for that bug to start to thrive in their lungs.  If they live with other people with CF, then they would spread the bug early on when it isn't much more "potent" than a random environmental exposure.  Later on, however, the bug has so completely colonized their lungs that they could expose another CF patient to a mega-dose of bacteria that their lungs are not acclimated to...and it is mentioned elsewhere in the article that bugs that are spread person to person have often become more resistant to antibiotics than those in the environment which makes them even more dangerous.

 

Just my theory based on the article's somewhat vague wording.

 

Wendy

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I know all this - what I'm not seeing is why it's such a big deal at a school but I've never heard of it for CF families and sibling groups? Is it just something not talked about? Or is the bacteria really only dangerous from someone you aren't related to (which makes zero sense)?

 

Here's how I understand it.

 

There is a specific bacteria, pseudonomas aeruginosa that a major contributor to pulmonary decline in individuals with CF.  Most people with CF will eventually contract this bacteria, and once they do, their life expectancy drops dramatically, because the bacteria is impossible to eradicate, and very damaging.  So, one of the goals of CF treatment is to prolong the period of time before a child or adult contracts the bacteria, or to prevent them from catching it altogether.   However, this is complicated by the fact that 

 

One common place for the germ to spread used to be CF specialty clinics, usually located in Children's hospitals.  The germ used to be rare, but once specialty clinics opened, it spread like wildfire, in waiting rooms, through shared equipment, etc . . .  So clinics began to take measures to protect patients who were p.A negative from those who were positive.  I know that the pulmonary clinic that used to treat my son (not for CF), had a large CF program.  There were signs all over saying that CF patients who were negative were only to be scheduled on Mondays, and patients who were positive were only to be scheduled on Tuesday (or something like that) to avoid people sharing a waiting room, and allow time for cleaning before the negative people came back in.

 

Clearly, if a parent has 2 children with CF, she's going to be aware of the p.A. status of both kids.  Hopefully, since they'll have been exposed to the same environment, they'll have the same status, so they won't be able to infect each other. There are also precautions they can take to reduce the likelihood of transmission if one gets it, and hopefully buy some time to identify the fact that one child has it.  However, at some point parents might be making very very difficult decisions.  Do you make a rule that your kids are never within 6 feet of each other?  Do you have them eat in separate rooms so that one can't cough on the other's kid's fork by mistake?  Do you have them wear a mask whenever they're home?  At some point quality of life becomes impacted.  I'm sure these are very difficult choices to make when you're also dealing with terrible news that one of your kids' life expectancy just dropped dramatically.  

 

So yes, as I understand it, siblings with CF can pose a risk to each other, but the downsides and logistics of separating siblings are greater than the downsides and logistics of enrolling the 2 nonsibling kids with the same diagnosis in your district in 2 different middle schools.  

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 In my opinion, if a family feels their child can't safely attend school, then it's on them to seek alternatives (bearing in mind that the school district is obligated to provide HBI). It is not on some other child to stop attending. You can't just target other kids, declare them a health risk, and kick them out. 

 

This, exactly. If CF put a child at risk, then the student at risk is one one who's needs should have been addressed. Student B shouldn't be punished because Student A is vulnerable. 

 

By way of example that might be a bit more relatable for some people: It is very common for children who receive transplants to have HBI provided by the public school for a period of time. They are at high risk for infection because their immune systems are compromised due to anti-rejection medications. A simple illness for a healthy child, such as the flu or a cold, can quickly became a serious illness for a transplant recipient. You can't tell 700 children they can't come to school because they might be bringing in germs so that the one student with the transplant can attend school.  

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The boy in question, Colman Chadam, was not "expelled," he was transferred to a different school. Big difference.

 

Reasonable people might debate how to protect two students who might place one another at risk, or place one student at risk, but its better to at least start with a facts based opening to the discussion rather than dealing with a falsehood straight out of the gate.

 

Bill

 

 

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If you take the word with all its meanings, the student was, in fact, expelled from the school. It may not have been a disciplinary expulsion, which is the type that we generally associate with schools, but as the word expel does actually mean deprive (someone) of membership of or involvement in a school or other organization, force (someone) to leave a place, especially a country, force out or eject (something), especially from the body, the child was indeed expelled. He (and his parents) didn't want to leave the school, yet he was forced to anyway.

 

That's an important distinction because this child's rights were violated. It wasn't an amicable concordance in which the student simply agreed to transfer.

Edited by TaraTheLiberator
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If you take the word with all its meanings, the student was, in fact, expelled from the school. It may not have been a disciplinary expulsion, which is the type that we generally associate with schools, but as the word expel does actually mean deprive (someone) of membership of or involvement in a school or other organization, force (someone) to leave a place, especially a country, force out or eject (something), especially from the body, the child was indeed expelled. He (and his parents) didn't want to leave the school, yet he was forced to anyway.

 

That's an important distinction because this child's rights were violated. It wasn't an amicable concordance in which the student simply agreed to transfer.

 

No, that is not what expulsion means. Words have meanings, twisting them doesn't further rational discourse.

 

Bill

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If he wasn't expelled, then does that mean he was eligible to go back? If not, then I believe expelled is being used correctly.

 

To simply say he was transferred is not appropriate if he was transferred against his will.

 

He may have been transferred against his will, but that is not the same thing as "being expelled." 

 

Let's not make this forum like FOX "News."

 

Bill

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If he wasn't expelled, then does that mean he was eligible to go back? If not, then I believe expelled is being used correctly.

 

To simply say he was transferred is not appropriate if he was transferred against his will.

 

 

Expelled is a word with specific meaning in the educational world.  It may mean other things in other contexts, but in education it means something specific.

 

Saying this child is expelled is like saying that a child who is made to stay home from school because they're throwing up is "suspended".  Suspension and Expulsion are specific disciplinary processes, they don't refer to medical decisions.  

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I believe this child was brought back to the same school two weeks later after everyone had time to weigh the risks. For this reason, I am surprised it merits a lawsuit. The child would be there now except the family later moved away. At least that was my understanding when I originally read about him.

 

Nonetheless, it poses interesting questions about a school's fiduciary responsibility to protect students from harm. Is it OK to send out a statement warning of a flu or lice outbreak even if students are not named individually? Where does one draw the line between individual rights and public health (albeit the health of two)?

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Thanks for pointing that out, Bill. I was also surprised they used the word expelled. He was forced to transfer. They continued to offer him an education at another school.

 

It does seem like his transfer was unnecessary given the information we have. But I think it raises the idea that in a situation like this, not everyone will be able to have what they want. If he had developed CF, it would have been best for him and the other boy to not be in the same class. Someone would have had to take that transfer. Would whoever was transferred have had their rights trampled on?

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If you think of this like special education for academic reasons, the district has valid reasons for saying the least restrictive environment (LRE) is not the neighborhood school. The school could not be made safe so the LRE was another school that could.

 

How did the district know the child was genetically predisposed. The parents must have given that information at some point. Once the parents gave that information the district had to act on it. Maybe they went too far, but these kind of life threatening health conditions are hard figure out for experts. School districts are not medical experts.

 

I think suing after you managed to get the placement after is ridiculous. Perhaps one could sue for costs of having to show the district the placement was not LRE, but my guess is they are suing for more.

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The only place I saw the word "expelled" is in the thread title. Am I missing something?

 

I think because of that, people are basically treating it like they kicked this child out of school. Would people really be this livid or upset by it if they thought of it as a case where a child was transferred to a different school (for the sake of argument since it's not even addressed in the article really - we could assume it's basically an equally good school by any measure with the exception of being slightly farther away) because the school briefly panicked about a potentially real medical reason?

 

Don't get me wrong... it seems like the school messed up. It was likely unnecessary to transfer him as I understand it. And the way his medical information was shared raises a lot of questions. But he wasn't kicked out of school. They didn't stop providing him with an education. And what they did was in misunderstanding how to protect another child.

 

But maybe people would be... it just seems slightly overblown. Especially since they reversed themselves two weeks later.

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