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

[kitten18]

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.

I agree.

It's not like they said, "Well, we're done with you. Good luck with your education."

[Haiku]

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?

 

I would be. The child was discriminated against. If it were my child, I wouldn't really care that it was apparently a misguided freak-out. I would expect that my child's legal rights be protected, and I would hold accountable those who failed to do so.

[TechWife]

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?

 

 

 

Although not the same circumstances, the Ryan White AIDS case comes to mind. 

[Farrar]

I would be. The child was discriminated against. If it were my child, I wouldn't really care that it was apparently a misguided freak-out. I would expect that my child's legal rights be protected, and I would hold accountable those who failed to do so.

 

Would he have been discriminated against if he had actually had CF? If he had actually had CF, then removing *one* of them would have been necessary. This is what I don't understand and no one will answer it. Would the school basically have to pick a child's rights to violate in that case?

 

I do think they messed up. Maybe a penalty is in order - I think it's especially concerning that they shared his medical information widely. That's not okay and that seems to me to be the root of this whole thing. But I also think they panicked over a real problem then got better advice and fixed it. 

[Farrar]

Although not the same circumstances, the Ryan White AIDS case comes to mind. 

 

Yeah, that's a good comparison. On the other hand, if they had transferred Ryan White to another school that was basically the same, I think we can agree that would have been way better than how they actually treated him...

[TechWife]

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.

 

 

This would apply to the child with CF, not the one who doesn't have it. The LRE environment for a healthy child with no disabilities is the school to which they are assigned. The LRE for a child with CF may be another classroom, another school or HBI. 

[TechWife]

Would he have been discriminated against if he had actually had CF? If he had actually had CF, then removing *one* of them would have been necessary. This is what I don't understand and no one will answer it. Would the school basically have to pick a child's rights to violate in that case?

 

 

No. The children would have an IEP and/or a 504 that would spell out their accommodations. Accommodating a need is not discrimination. 

 

ETA: Refusing to accomodate a need is discrimination. 

Edited February 4, 2016 by TechWife

[gardenmom5]

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)?

 

the local district isn't even doing that anymore - so there is no warning about lice.  and what's more - kids who have lice are allowed to go to school even if they are still infested.

 

they do send home letters to all parents describing what symptoms for flu/illness warrants a child being kept at home until the symptoms are no longer present.

[Daria]

I agree.

It's not like they said, "Well, we're done with you. Good luck with your education."

 

I think this is one of those cases where one or more organizations are funding or supporting this case as a way to test the law and gain clarity.  The fact that the Departments of Education and Justice have weighed in in the kid's favor, support that view, as does the fact that his lawyer refers to it as a "test case".  The issue isn't whether or not Colman should have been allowed to attend, it's whether 504 and the ADA protects people who are discriminated against on the basis of their genetic information. 

 

Right now, 504 and ADA protect people who 

 

-- have a physical or mental impairment which substantially limits one or more major life activities

-- have a record of such an impairment

OR -- are regarded as having such an impairment 

 

There are already legal protections in the areas of employment and insurance based on genetic information.  This case is asking, do existing laws (ADA and section 504) already provide protection in other areas such as housing and education?  Specifically, do people like Colman count as being "regarded as having such an impairment"?  If not, then the obvious next question is "should we write such laws?"  

 

This case is the perfect test case for this.  There's no question that Colman doesn't have CF, but that the school regarded him as having it.  There's also no question that their judgement was based on test results.  Finally, since he didn't actually require any accommodation at all, there's no question of whether the asked for accommodation (allowing him to attend the school) was "reasonable".  So, there's really no way that the courts can decide this case, without tackling the issue of whether someone with poor genetic information, but no actual impairment, is protected under 504 and the ADA.  

 

My guess is that either Colman's parents approached a lawyer before there was a resolution, and the lawyer realized that this case had the potential to be a really important one.  Or that some organization heard about the situation and approached Colman's parents.  Either way, the question was judged to be important enough to get support from the federal government, not because it was so crucial that Colman make up those 2 weeks of school, but because a decision that 504 and ADA apply to people with poor genetic information has the potential to provide protection for thousands, eventually millions, of Americans. 

[Daria]

This would apply to the child with CF, not the one who doesn't have it. The LRE environment for a healthy child with no disabilities is the school to which they are assigned. The LRE for a child with CF may be another classroom, another school or HBI. 

 

LRE only applies to students with disabilities who qualify for services under IDEA.  Students without disabilities as defined by IDEA have no legal right to LRE.  

 

There is no mention of IDEA in the article, which makes me think that Colman does not have an IEP.   IDEA does not have language about students being "regarded as having" disabilities, it only applies to kids who actually do have disabilities.  Of course, it's possible that Colman has an unrelated disability or that his heart condition is severe enough to make him eligible, but it seems likely that it would be mentioned in the article, as that would turn this into a case about IDEA.

 

The children with CF may or may not be considered "Other Health Impaired" under the law.  If they are then they do have the right to L.R.E., as well as the right to "stay put".

[bettyandbob]

This would apply to the child with CF, not the one who doesn't have it. The LRE environment for a healthy child with no disabilities is the school to which they are assigned. The LRE for a child with CF may be another classroom, another school or HBI.

I'm thinking what happened is someone at the district read "genetic markers" in the health record and thought it meant the child had CF. Or they didn't understand what the parent conveyed about genetic predisposition. I think theres a good chance the parents had a part in miscommunication. If the child had actually had CF the placement would have been LRE.

 

LRE is being used as an equivalent term for what the district tried to do. I know the term under IDEA doesn't apply .

Edited February 5, 2016 by Diana P.

[Haiku]

Would he have been discriminated against if he had actually had CF? If he had actually had CF, then removing *one* of them would have been necessary. This is what I don't understand and no one will answer it. Would the school basically have to pick a child's rights to violate in that case?

 

I feel like I already addressed this, but I'll try again.

 

If the child in question actually had CF and was removed from the school against his will, then yes, it would be discrimination and a violation of his rights. IF removing one of the children was necessary, then it would fall to the parents who felt that their child could not safely attend the school to do something about it. The school would NOT have to pick a certain child's rights to violate. If a child has a medical disability and cannot attend school in the same manner that other children do, then the child's IEP should address that. Public school is not a "first come, first served" entity, and a child cannot be removed from school simply because some other parents say "We don't want that child going to school with our child." 

[Haiku]

The children with CF may or may not be considered "Other Health Impaired" under the law.  If they are then they do have the right to L.R.E., as well as the right to "stay put".

 

But they do not have the right to "stay put" if that means that another child has to be removed. Accommodating a child's disability does not extend to excluding other students to keep one student safe. My child has HIV. If her immune system were so compromised that she could potentially contract a life-threatening illness from another student, I do not, as a parent, have the right to demand, and she does not, as a student, have the right to receive, an accommodation that bars another student from attending school. This was very carefully explained to me every time we had an IEP meeting or discussed her rights under IDEA. Her LRE could not have come at the expense of some other student.

 

ETA: To be more concrete: many people harbor cytomegalovirus (CMV); in fact, if you regularly scoop a catbox, you probably have it. In people with healthy immune systems, it generally causes no problems whatsoever. However, it can cause CMV retinitis, encephalitis, and other nasty things in people with compromised immune systems. If I discovered that another child at my child's school had CMV, it would not be within my child's rights to have that child excluded from school in an attempt to keep my child safe. If I felt that being in school with a child with CMV was a threat to my child's health, then attending that school would not be her LRE.

Edited February 5, 2016 by TaraTheLiberator

[Ravin]

I finally got around to looking at the article. The parents shared TMI. Then the teachers with access to his records shared confidential medical information they should not have shared with other parents (specifically, the parents of the kids who actually HAD CF). The only basis for booting the kid to another school in the middle of the school year was a genetic predisposition that was no one's business at that school. 

 

The whole thing could have been avoided had the parents not shared information with the school that didn't need to be shared. At the same time, the school handled it badly and that is grounds for a lawsuit, which is pretty clearly being pursued at this point as a test case for a de novo application of law.

[Daria]

But they do not have the right to "stay put" if that means that another child has to be removed. Accommodating a child's disability does not extend to excluding other students to keep one student safe. My child has HIV. If her immune system were so compromised that she could potentially contract a life-threatening illness from another student, I do not, as a parent, have the right to demand, and she does not, as a student, have the right to receive, an accommodation that bars another student from attending school. This was very carefully explained to me every time we had an IEP meeting or discussed her rights under IDEA. Her LRE could not have come at the expense of some other student.

 

"Stay Put" is a specific right outlined in IDEA.  The right to stay put guarantees the right of a child to stay in the same educational setting while a due process complaint is underway.  Like LRE, the right of "Stay Put" only applies to kids with an IEP. 

 

So yes, if there are 2 children who can not be in the same classroom, one of whom has "Stay Put" rights because they have an IEP and they are already in the educational setting, and one of whom does not have "Stay Put" rights, either because they don't have an IEP, or because they are not yet in the educational setting, then "Stay Put" right will need to be taken into account when making the decision about which child to move.  

 

In this case, it is not at all clear whether any of the kids involved had either the right to LRE, or the right to Stay Put, but it seems very unlikely that Colman had neither. 

[Ravin]

"Stay Put" is a specific right outlined in IDEA.  The right to stay put guarantees the right of a child to stay in the same educational setting while a due process complaint is underway.  Like LRE, the right of "Stay Put" only applies to kids with an IEP. 

 

So yes, if there are 2 children who can not be in the same classroom, one of whom has "Stay Put" rights because they have an IEP and they are already in the educational setting, and one of whom does not have "Stay Put" rights, either because they don't have an IEP, or because they are not yet in the educational setting, then "Stay Put" right will need to be taken into account when making the decision about which child to move.  

 

In this case, it is not at all clear whether any of the kids involved had either the right to LRE, or the right to Stay Put, but it seems very unlikely that Colman had neither. 

 

They also had no legitimate ground for NEEDING to move him because he didn't have CF. You don't move a kid just because a kid with an IEP doesn't like his face, either.

[Daria]

I feel like I already addressed this, but I'll try again.

 

If the child in question actually had CF and was removed from the school against his will, then yes, it would be discrimination and a violation of his rights. IF removing one of the children was necessary, then it would fall to the parents who felt that their child could not safely attend the school to do something about it. The school would NOT have to pick a certain child's rights to violate. If a child has a medical disability and cannot attend school in the same manner that other children do, then the child's IEP should address that. Public school is not a "first come, first served" entity, and a child cannot be removed from school simply because some other parents say "We don't want that child going to school with our child." 

 

Public school, especially for kids with disabilities, can absolutely be "first come, first served".

 

In some states, laws are very specific about the number of spots in special education classes.  For example, a class might be coded "8:1:1" meaning that there are 8 student spots.  If a ninth child who qualifies for "8:1:1" moves into a school district, then they can't just force their way into that class.  Instead, the district will need to, by law, open another 8:1:1 classroom or bus the child to another school. Even if the district decided that the best thing to do was to move Johnny, who was already in the class, because he didn't mesh well with the other students, or he lived close to an existing bus route, Johnny would be able to declare stay put rights.  The new student, however, wouldn't have stay put rights, and so would be the one to move.  

[Haiku]

"Stay Put" is a specific right outlined in IDEA.  The right to stay put guarantees the right of a child to stay in the same educational setting while a due process complaint is underway.  Like LRE, the right of "Stay Put" only applies to kids with an IEP. 

 

Right. A child has a right to "stay put" while a proposed change to an IEP is disputed. That means that if the school proposed changing the child with CF's IEP to HBI in an attempt to minimize health and safety risks to the child, and the parents are opposed to this, the child has a right to stay in his current educational environment until the dispute is resolved. "Stay put" protects a child from arbitrary changes to his IEP.

 

It does not mean that the school can then strip another child of his rights, and it does not mean that a child has a right to stay in a certain educational environment simply because they have an IEP. It does  not mean that a parent can demand that another child be removed from the school so their child can "stay put."

[Haiku]

In some states, laws are very specific about the number of spots in special education classes.  

 

But that is not what is being discussed here.

[Daria]

They also had no legitimate ground for NEEDING to move him because he didn't have CF. You don't move a kid just because a kid with an IEP doesn't like his face, either.

 

Well yes, I agree with you 100%.  There's no question that asking him to move was a stupid decision, and was totally pointless.  It's also likely that the school violated FERPA, and depending on who released the info to the teachers, HIPAA when they disclosed to the parents of the other kids.  

 

But schools and districts frequently do stupid and pointless things, including stupid and pointless things that hurt kids.  You can't take that to court and expect it to win.  So, the legal question being asked is whether  the school had the legal right to ask him to move.  If he's not a part of a protected class, then they probably do.  So, the question is, as a person with CF markers, but no CF, does he qualify as a person with a disability?  Does he fall into the category of "regarded as having such an impairment"?  That's what this case is about.

 

It's not about LRE, it's not about Stay Put because those are legal terms that only apply to kids with IEPs.  

 

That doesn't mean I'm not saying that I think it was fair to ask him to move.  I'm just saying that for kids with IEPs the student who is already in a placement does have a legal right to stay under certain circumstances.

[Rachel]

It seems super obvious that they shouldn't have attempted to remove him from the school. However, what if he had developed CF? One of the kids would have to go, yes?

This article states the child has a genetic predisposition for CF. I think what they actually mean is the child is a carrier for CF. It means he had a specific gene mutation that he could pass on and his children could have CF, not that this student could someday develop CF. It's different than the breast cancer gene which I believe means an individual has a higher risk of eventually developing breast cancer.

 

My daughter is a carrier, it's a recessive trait so her children would only have CF if the father is also a carrier or has CF.

[TechWife]

LRE only applies to students with disabilities who qualify for services under IDEA.  Students without disabilities as defined by IDEA have no legal right to LRE.  

 

 

 

While this may be technically true, the LRE nomenclature came about because it is assumed that children who are not disabled are already in the LRE. The LRE provision is there to ensure that disabled children are not unnecessarily institutionalized or otherwise unnecessarily isolated from the general population (restricted). If a school wishes to place a child in a restrictive environment, then they must justify the placement through a thorough evaluation and an IEP must be put in place. They cannot randomly decide to place someone in a self contained classroom or pull the child from their classroom for additional help. Likewise,  parents have the right to demand an evaluation for their child and an IEP if it is indicated by the results of the evaluation. All of this together does point to the fact that a child without a disability is entitled to be educated in the LRE possible.  If there is a legal precedent established otherwise, could you please reference it because I'd love to learn about the rationale behind it (I'm saying that honestly, not in a snarky manner)? 

[Supertechmom]

I think what is being missed is that the school had no reason to move the child.  He was not a danger to the CF kid because he did not have CF.  He's not going to wake up one day and have CF.  He's a carrier.  If he hooks up with another CF person or a CF carrier, then his kids might develop CF.  He isn't going to have CF.   But as a carrier, his rights were violated.  He was removed erroneously.  The only possibility I can think of is if he has siblings who have CF and the concern was that the sibling had passed germs to him that might in turn carry over to the CF in the classroom.  Which is basically what every CF kid in America faces everyday.  The school was wrong.    They had no reason to move him as he does not have CF. And should have never shared his medical information.  

[Ravin]

http://www.cfmedicine.com/cfdocs/cftext/genetics.htm#severity

 

This kid could very well have double recessive CFTR gene mutations but have such a mild form of mutation that it hasn't expressed as CF, or hasn't expressed as CF yet but could when he's older.

 

It doesn't follow that someone in that condition who doesn't have compromised lungs is going to be a menace to kids with symptomatic CF.

[MercyA]

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.

 

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."

 

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.

 

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.

 

Sorry, all. In my thread title I admittedly went with the phrasing used in the first article I saw about this story, here. I wrote it quickly and likely without enough thought. I've changed it.

[sewingmama]

We had a young boy at our church who had CF. Then a new family moved in who's daughter had CF and the family of the boy joined another ward. Apparently the girl was a carrier of the bacteria that is dangerous to others with CF.

 

In any case they couldn't be together. Nobody saw it as discrimination..it was just what had to be done to keep the boy healthy. The girl is only 12 and has just been given a terminal diagnoses ... they just can't do anything to help her anymore. CF is awful.

 

The OP's case is odd though...especially if he doesnt actually have the disease. I wonder if maybe he tested positive to being a carrier of that strain of bacteria.

Edited February 5, 2016 by sewingmama

[Ravin]

We had a young boy at our church who had CF. Then a new family moved in who's daughter had CF and the family of the boy joined another ward. Apparently the girl was a carrier of the bacteria that is dangerous to others with CF.

 

In any case they couldn't be together. Nobody saw it as discrimination..it was just what had to be done to keep the boy healthy. The girl is only 12 and has just been given a terminal diagnoses ... they just can't do anything to help her anymore. CF is awful.

 

The OP's case is odd though...especially if he doesnt actually have the disease. I wonder if maybe he tested positive to being a carrier of that strain of bacteria.

 

It's highly unlikely he'd be carrying any odd bacterial strains if he doesn't have CF. Also, the only information the school appears to have had and based the decision on was his genetic predisposition.

 

A genetic predisposition to an illness is not the same as having the illness. 

[wendyroo]

It's highly unlikely he'd be carrying any odd bacterial strains if he doesn't have CF. Also, the only information the school appears to have had and based the decision on was his genetic predisposition.

 

A genetic predisposition to an illness is not the same as having the illness. 

 

But is it the school's job to know that?  

 

This is how I am imagining it playing out (giving the school the benefit of the doubt a bit):

His parent's volunteered the information that he was a CF carrier.  School personnel told the parent's of the current CF children that there was a new child with something to do with CF...I don't know if they shared his name, or just that there was such a child.  The parent's of the current CF students, not knowing the new student's exact CF status, said this could be a big, huge, catastrophic problem that could be a death sentence for their children.  The school, not being CF experts, immediately transferred the new student to a different school while they figured out what was going on.  Two weeks later, after establishing that the new student was not, in fact, sick with CF and therefore did not present a risk to the current students he was transferred back.

 

I can see faulting the school with improperly sharing medical information if they did so.  I can see both sides of the argument over who should have transferred if the new student did actually have CF.

 

What I cannot see is blaming the school for taking swift (mostly harmless) action to immediately eliminate a risk they did not understand while they investigated the situation.  The new kid had to endure a bit of upheaval and inconvenience for a couple weeks, but it kept everyone safe while the school consulted the medical field about a medical issue.

 

I can just image the outrage if the new student had had CF and the school, even knowing the potential problem had twiddled their thumbs for a few weeks as they decided how to handle the situation without discriminating against anyone.  That could have led to dead children, so I'm willing to cut them a lot of slack for acting quickly even if there were some minor flaws in their plan.

 

Wendy 

[Haiku]

What I cannot see is blaming the school for taking swift (mostly harmless) action to immediately eliminate a risk they did not understand while they investigated the situation.  

 

That's what the school in Texas did, too, when a kid brought a clock to school.

 

It's not good enough to give schools slack when they fail to protect students' rights. They are legally required to protect students' rights. Students should not have to bear the brunt of school personnel not knowing how to properly (and legally) do their jobs.

 

The first school my dd went to called me one day soon after she enrolled to tell me to come pick her up because she had a bloody lip. I asked whether she needed stitches and they said no, her lip was dry and had cracked. I asked why that required me to come pick her up. Hem, haw, well ... you know ... HIV. I asked them whether my dd was rubbing her bloody lip on people, and they said no, of course not, she was just holding a tissue to it. I asked whether that was the appropriate course of action for a non-HIV+ student, and they said yes. I asked whether they understood the concepts of universal precautions and medical discrimination. Hem, haw, well ... maybe we overreacted a bit. Yes, maybe you did. If they had forced me to come pick up my kid over a cracked lip, you can bet your butt they would have been hearing from my lawyer. I also threatened a lawyer when the principal of another school discussed my child's confidential medical information with her in front of other students. If I entrust my kid to the school, they damn well better know how to protect her and her rights. 

[wendyroo]

That's what the school in Texas did, too, when a kid brought a clock to school.

 

I don't agree.  In that case the teacher kept the clock/"bomb" in her desk all day.  That was certainly not taking swift action to eliminate risk.  I would have supported the teacher if she had seen something that she thought was a bomb and called the bomb squad.  It is not a teacher's job to know if something is a bomb or not and I don't want teachers making guesses about things outside their perview that could kill my child if they are wrong.

 

Wendy

[Haiku]

It is not a teacher's job to know if something is a bomb or not and I don't want teachers making guesses about things outside their perview that could kill my child if they are wrong.

 

But it is a teacher's job to know how to take concerns up the appropriate chain of command, and it is the school's job to know how to find out the answers to atypical questions. They can't just run around waving their hands in the air and take swift, ill-considered action and then expect everyone to just cut them some slack for overreacting.

[MrsWeasley]

I'm curious about the circumstances that they disclosed his genetic info. Did this come up on the health form from the nurse?

[itsheresomewhere]

I'm curious about the circumstances that they disclosed his genetic info. Did this come up on the health form from the nurse?

Just guessing here but they may have presented lots of medical files to make sure the child got whatever help he needed to make sure he succeeded in school.  Not uncommon if you are in a district that makes things difficult. 

[Spy Car]

Sorry, all. In my thread title I admittedly went with the phrasing used in the first article I saw about this story, here. I wrote it quickly and likely without enough thought. I've changed it.

 

Thanks for that. It is an interesting ethical issue and one the school seemingly mis-handled in an effort to protect the health of a child with CF.

 

Thoughtful reflection about how to handle these sorts of cases is very worthwhile, and I think the use of "expulsion" in the title interfered with reasoned discussion.

 

Bill

[TechWife]

 

A genetic predisposition to an illness is not the same as having the illness. 

 

 

But is it the school's job to know that?  

 

 

 

If they are making school assignments based upon medical information, it certainly is their job to  know what it means so that they can make the appropriate assignment.