Family battling Children’s Hospital to bring teen home for Christmas

[jjenny]

I'm not assuming anything.

I know only one side has been presented in the media.

I prefer to know BOTH sides before forming my own opinion.


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We don't just know one side. Court documents aren't secret.
I would prefer DCF and Children's released all the information they had. In fact parents could release medical doctors from having to follow HIPAA.
But I am not assuming it will make them look better. In fact I believe the things we don't know would make them look worse.
What have they been doing to the child all this time?

 

[Linda7NJ]

We don't just know one side. Court documents aren't secret.

I would prefer DCF and Children's released all the information they had. In fact parents could release medical doctors from having to follow HIPAA.

But I am not assuming it will make them look better. In fact I believe the things we don't know would make them look worse.

What have they been doing to the child all this time?

You've just documented the information we do not have because it hasn't been released.


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[jjenny]

You've just documented the information we do not have because it hasn't been released.


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Judge's ruling has been released.

 

[Linda7NJ]

Judge's ruling has been released.

Yes, it has. The judges ruling makes it very clear to me that there is much more to the story.


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[jjenny]

Yes, it has. The judges ruling makes it very clear to me that there is much more to the story.


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Oh I am sure there is much to it. But I have a very different idea of what that "much more" is.

 

[Linda7NJ]

Oh I am sure there is much to it. But I have a very different idea of what that "much more" is.

Ideas and suspicions are just that.

I need more.


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[Morag]

Sadly, some parents do engage in medical child abuse.

Sadly, some physicians are unintentionally complicit in this abuse.

In this case, at least one judge and two states' DCFs have reason to believe that this abuse has occurred in the Pelletier case.

And isn't Justina in a non-medical facility in Farmington now? The Wayside Youth and Family Support facility seems to provide education and counseling rather than medical services, so she's apparently well enough to live outside a hospital setting, not deteriorating as her family claims.

I'm very sorry for the Pelletiers' suffering if they are blameless in this case; but there must be something in this which makes those who are privy to all the information think that Justina is not safe in their care.

 

[jjenny]

Sadly, some parents do engage in medical child abuse.

Sadly, some physicians are unintentionally complicit in this abuse.

In this case, at least one judge and two states' DCFs have reason to believe that this abuse has occurred in the Pelletier case.

And isn't Justina in a non-medical facility in Farmington now? The Wayside Youth and Family Support facility seems to provide education and counseling rather than medical services, so she's apparently well enough to live outside a hospital setting, not deteriorating as her family claims.

I'm very sorry for the Pelletiers' suffering if they are blameless in this case; but there must be something in this which makes those who are privy to all the information think that Justina is not safe in their care.

If CT DCF had any reason to believe there was abuse, why are they refusing to take the case? Justina was a resident of CT, not MA. MA shouldn't have had jurisdiction over her case. Justina was transferred to Wayside, and recently taken back to see Dr. Korson. Which begs the question as to why DCF would want take her to see Dr. Korson if Children's successfully treated her for somatoform.
There is something stinks here, and I don't think it's the parents.

 

[wendiesan]

On April 4, Mass. Legislators introduced a bill that would force state officials to return Justina Pelletier to her parents.

This doesn't seem to be presented solely to move the case from Mass. to Con. supervision, but also to have been connected to the current investigation of the practices and failures of DCF. IMO, this may not be passed since it was proposed by an activist organization but the publicity surrounding its presentation may trigger further scrutiny of DCF policies.

“Does DCF have a blank check in this case? It is time that we as legislators know how much money is being spent on the Pelletier matter.” Representative Marc Lombardo commented. “The administration has indicated that DCF lacks the resources necessary to carry out their duties. If this is true, why is DCF spending what appears to be endless amounts of money fighting to keep a loving family and their daughter apart? With over 130 children under DCF care currently missing, it might be time for DCF to reevaluate their priorities.”

http://www.lifenews.com/2014/04/08/...-custody-of-justina-pelletier-to-her-parents/

 

[lawstudent]

On April 4, Mass. Legislators introduced a bill that would force state officials to return Justina Pelletier to her parents.

This doesn't seem to be presented solely to move the case from Mass. to Con. supervision, but also to have been connected to the current investigation of the practices and failures of DCF. IMO, this may not be passed since it was proposed by an activist organization but the publicity surrounding its presentation may trigger further scrutiny of DCF policies.

“Does DCF have a blank check in this case? It is time that we as legislators know how much money is being spent on the Pelletier matter.” Representative Marc Lombardo commented. “The administration has indicated that DCF lacks the resources necessary to carry out their duties. If this is true, why is DCF spending what appears to be endless amounts of money fighting to keep a loving family and their daughter apart? With over 130 children under DCF care currently missing, it might be time for DCF to reevaluate their priorities.”

http://www.lifenews.com/2014/04/08/...-custody-of-justina-pelletier-to-her-parents/

That would never get passed - just a publicity move. It also makes no sense because if somehow this was legal and passed, DCF could go and get her back immediately using the same grounds, although now it might be up to CT - if they kept her at Tufts, I think MA would still have jurisdiction. You can't exempt someone permanently from having their welfare investigated and acted on, unless you abolished DCF altogether.

 

[jjenny]

That would never get passed - just a publicity move. It also makes no sense because if somehow this was legal and passed, DCF could go and get her back immediately using the same grounds, although now it might be up to CT - if they kept her at Tufts, I think MA would still have jurisdiction. You can't exempt someone permanently from having their welfare investigated and acted on, unless you abolished DCF altogether.

What grounds can DCF use? As far as I can tell, DCF had no grounds to begin with.
By law, parents are allowed to decide which medical care to follow in case of conflicting medical opinion.
As for procedures Justina had, she had two major surgical procedures.
One to remove congenital band, the other to put in a port. I went on youtube and viewed some videos about children with mitochondrial disease, who had way more procedures done than that.
Nobody removed them from the parents.

 

[lawstudent]

What grounds can DCF use? As far as I can tell, DCF had no grounds to begin with.
By law, parents are allowed to decide which medical care to follow in case of conflicting medical opinion.
As for procedures Justina had, she had two major surgical procedures.
One to remove congenital band, the other to put in a port. I went on youtube and viewed some videos about children with mitochondrial disease, who had way more procedures done than that.
Nobody removed them from the parents.

They removed her for neglect, not merely conflicting medical opinion (although there is some heavy overlap implicated in this case that makes this justification questionable, obviously, which is why so many people are angry).

We don't know her full medical history, but it has nothing to do with the number of procedures. If there's evidence she needed them, she could have 500 and not get removed. If they believe her parents are inducing/encouraging symptoms and trying to get more surgeries or keeping her on heavy medications, or not getting her help if she's threatening self-harm or in danger of medication issues, than even one incident can be enough (but because medical abuse is hard to prove, they usually point to a pattern).

Neglect is obviously a broad concept, but it goes beyond opinion to omission. It means the court found she needs care that her parents refuse to give her - that's different than a difference of diagnosis. Say a child was threatening to commit suicide and the parents thought it was life events but the doctors thought it was depression, or one party asserted anxiety, bipolar disorder, etc. Any sort of dispute you can imagine. If the parents refused to take that child in for some sort of treatment to address self-harm issues, that child could be removed for neglect. Say a child was suffering from signs of an infection and the parents insisted it was bacterial whereas the hospital said viral. They can disagree as to cause, but if the child is deteriorating and they keep refusing the appropriate life-saving antibiotics, they can get in trouble for neglect. Or, sometimes doctors can't distinguish what kind of cancer someone has. The parents and doctor might disagree as to the type, but if the parents believe it can be cured by a healthy diet and prayer and refuse chemo, they could get in trouble for neglect. I'm not saying this is necessarily right, because state interference with parental action is always a concern, but it is legal. So DCF could assert she's not getting the treatment she needs and take her right back, assuming she's still sick, which they obviously think she is if they won't return her for the parent's refusal to comply with treatment.

ETA: And even if your opinion is there are not grounds, the authorities who decided custody obviously disagree. All the bill does is order her released - it can't order authorities to permanently refrain from investigating and finding the exact same things. The legislature doesn't make custodial decisions. What could make a difference is passing a law specifying what constitutes medical abuse/neglect etc. But there's still always flexibility to that ruling.

 

[jjenny]

Neglect was not following the Children's protocol. Which I view as absurd, as parents were following Tuft's protocol. Per law, they are allowed to decide which protocol to follow.
They shouldn't have to follow Children's protocol. If she were my child, I would have refused to follow Children's protocol also, as "somatoform" sounds like psychiatric mambo jambo to me. This diagnosis of somatoform is supposed to be given after all physical reasons have been ruled out, yet, she was "diagnosed" with it very quickly after arriving at Children's. There is no way they could have possibly done tests needed to rule out physical reasons for her illness within the time frame provided.
Never mind that Justina was a resident of CT, yet MA DCF is the one who took her into custody and is refusing to release her.
If she goes back to CT, MA DCF will have no right to remove her. They shouldn't have had jurisdiction to begin with.

 

[lawstudent]

Neglect was not following the Children's protocol. Which I view as absurd, as parents were following Tuft's protocol. Per law, they are allowed to decide which protocol to follow.
They shouldn't have to follow Children's protocol. If she were my child, I would have refused to follow Children's protocol also, as "somatoform" sounds like psychiatric mambo jambo to me. This diagnosis of somatoform is supposed to be given after all physical reasons have been ruled out, yet, she was "diagnosed" with it very quickly after arriving at Children's. There is no way they could have possibly done tests needed to rule out physical reasons for her illness within the time frame provided.
Never mind that Justina was a resident of CT, yet MA DCF is the one who took her into custody and is refusing to release her.
If she goes back to CT, MA DCF will have no right to remove her. They shouldn't have had jurisdiction to begin with.

1) We don't know what the neglect was! This isn't public information! Her parents obviously are spinning things to some extent because they are angry, and probably don't have have total understanding of the legal nuances involved. Children's Hospital wouldn't suddenly single this family out for neglect when I'm sure tons of families seek another opinion every day or refuse to comply with protocol without being reported - I'm sure they disagree with many parents over medical treatment. There is some reason - whether you believe the family just pissed them off or they were in some sort of dispute with Tufts and they exaggerated the allegations as a result, or whether there is a real reason. They would have to show she is in actual danger as a result of her parents' disagreement. And because I agree that somatoform can be kind of questionable, I think more went on than just a claim of diagnosis -I think a judge would be more hesitant otherwise. Since it can't be proven, much like mitochondrial disease, I would guess they had to point to some serious psychological symptoms and maintain that she wasn't getting treated for them. We don't have access to that private information. They can't just say "oh, look at her physical symptoms, all in her head." There would have to be some reason they think she is reacting this way, probably because she is displaying psychological issues that they are claiming could result in her harming herself or perhaps due to medication issues that pose the risk of OD. Those are the 2 most logical causes for neglect I could think of here. A mere disagreement isn't one of them.

2) There is no test to rule out the disorder, and I assume she's been tested over the years to verify there are no other physical disorders causing these issues or they would have come up. And, she may have been displaying psychological symptoms as well. That's the implication - the somatoform is probably not diagnosed based largely on the physical symptoms, but on the psychological ones, because the physical ones would be largely unexplained.

3) CT child services won't take over, although they could, since this is a custody issue. But CT didn't have jurisdiction over the initial dispute - the report was made in MA to MA authorities - they have a right to protect any child in their domain - this isn't like a normal case where a crime is alleged. This is child protection only - so if, for example, someone was in MA from another country on vacation and was caught abusing a child, it could be seized and placed into care in MA until they could work out an arrangement with the home country or relatives. They can't wait for someone else to step in when a child is in danger, so those jurisdictional issues don't apply. Once the report was made to CT, they also now had cause to investigate and get involved, and decided not to. No one had exclusive authority, but the court didn't need any more jurisdiction other than Justina being in the Commonwealth and the alleged incidents having taken place there.

 

[jjenny]

She has been tested and given diagnosis of mitochondrial disease by Tufts.
Which Children's clearly ignored for no apparent reason.
And it's not the only family with a sick child that Children's turned into DCF. So they haven't exactly "singled" this family out.
As for suggesting that neglect could be something else? Excuse me, what else can it be?
We know she was living with her parents in CT.
We know parents took her to Children's.
We know Children's turned her into DCF a short time after she arrived there.
It's being reported parents refused to follow Children's protocol and wanted to take her back to Tufts, and Children's then turned her into DCF.
So what is it do you think this neglect can possibly be?

 

[lawstudent]

She has been tested and given diagnosis of mitochondrial disease by Tufts.
Which Children's clearly ignored for no apparent reason.
And it's not the only family with a sick child that Children's turned into DCF. So they haven't exactly "singled" this family out.
As for suggesting that neglect could be something else? Excuse me, what else can it be?
We know she was living with her parents in CT.
We know parents took her to Children's.
We know Children's turned her into DCF a short time after she arrived there.
It's being reported parents refused to follow Children's protocol and wanted to take her back to Tufts, and Children's then turned her into DCF.
So what is it do you think this neglect can possibly be?

1) There is no test for it - but based on her symptoms, she did receive that diagnosis, and Tufts is a good institution, so I'm not questioning that. But, it is possible for diagnoses to be incorrect, or for dual diagnoses to be present.

In fact, I'm not sure if I'm remembering incorrectly, but the judge's ruling says "There is evidence she has somatoform disorder". Does it ever say there is evidence she didn't have mitochondrial disease? As someone who reads this stuff every day, often what is not included is the biggest hint. That to me implies they think both might be contributing - she could have somatoform, but have developed psychological issues from dealing with the condition, difficult parents, and medication, that are worsening the symptoms. It's entirely possible both diagnoses are correct.

2) We don't know that Children's a) ignored it or b) what the reason was. Do you realize the only people who can talk about her med info are the parents? Do you find it curious they aren't talking about proper diagnostic procedures and the symptoms identified by doctors? That would be normal procedure, and it could force the state to justify itself in relying on Children's info. Yet they are avoiding the issue...I'd say it could be for privacy concerns, but they don't seem to be interested in keeping things quiet anymore.

It's like that Virginia state senator who recently gave a 60 minutes interview about how they couldn't get his adult son committed and the son ended up stabbing him and committing suicide. Nowhere in the interview did he ever explain how his son was acting that led them to take him to the hospital - he obviously wasn't threatening himself or others, because the hospital would have been forced to hold him. But a court order was obtained to have him held for other reasons relating to mental illness, but there wasn't a bed available. Tragic case, but if he's advocating for changes to the system, he has to specify what symptoms would require an adult being held against his will that don't involve threats.

3) I told you what the neglect could be. It is related to Children's - I'm not disputing that. But disagreement with diagnosis/protocol does not give parents the right to refuse treatment if it endangers the child. That's what constitutes neglect. It's not thinking the symptoms were caused by something else, but it is refusing to treat certain symptoms. I don't believe that if they honestly were going to take her right to Tufts, that she would have been taken away. If Tufts doctors had advised different treatment, they wouldn't be questioned. Both Children's and Tufts are highly respected and it 's not neglect to prefer one over the other. Something else happened. If I had to guess, I would say they were refusing to treat serious psychological symptoms at all, whether at Tufts or not. She is being taken away until they agree to comply with a treatment plan, and the state can't pick the hospital. The Tufts doctors wouldn't be forced to provide treatment by DCF or the courts that they found was inappropriate. If they agreed to have her treated at Tufts in accordance with medical recommendations, they'd get her back.

 

[jjenny]

Parents have been talking about proper diagnostic procedures. They aren't avoiding any issues. Parents have said exactly that-she was quickly diagnosed with somatoform upon arriving at Children's. Doctor at Children's told them that mitochondrial disease isn't even real. She was not allowed to see a GI specialist she specifically came to Children's to see.
I find it absurd that these people took their child to the hospital, hospital ignored the previous diagnosis, parents didn't believe in the new one, and hospital then contacts DCF, and 14 months later they still don't have the child back.
If DCF has so much power, something needs to be done about it.

 

[lawstudent]

Parents have been talking about proper diagnostic procedures. They aren't avoiding any issues. Parents have said exactly that-she was quickly diagnosed with somatoform upon arriving at Children's. Doctor at Children's told them that mitochondrial disease isn't even real. She was not allowed to see a GI specialist she specifically came to Children's to see.
I find it absurd that these people took their child to the hospital, hospital ignored the previous diagnosis, parents didn't believe in the new one, and hospital then contacts DCF, and 14 months later they still don't have the child back.
If DCF has so much power, something needs to be done about it.

Did she have an appointment with the GI specialist? How did some other doctor get involved?

Why did she end up at Children's to begin with?

DCF does have too much power, but the reason they have it is because a lot of people found it absurd when parents were allowed to keep their children and bad things happened. What if she does have serious psychological issues? What if in the last 14 months she'd harmed herself? Everyone would be mad at Children's and DCF for not getting involved.

 

[jjenny]

Did she have an appointment with the GI specialist? How did some other doctor get involved?

Why did she end up at Children's to begin with?

DCF does have too much power, but the reason they have it is because a lot of people found it absurd when parents were allowed to keep their children and bad things happened. What if she does have serious psychological issues? What if in the last 14 months she'd harmed herself? Everyone would be mad at Children's and DCF for not getting involved.

My understanding is that she was referred by her Dr. at Tufts to the Dr. in Children's. She was taken by an ambulance and was supposed to have been admitted to the GI unit. Instead she somehow ended up in neurology.
She was not allowed to see the GI doctor she came there to see.
As for what ifs-what if moon was made of cheese?
Nobody has alleged she is trying to harm herself on purpose as far as I can tell.
She successfully lived at home for 14 years without harming herself.
She is accused of having a somatoform disorder. Not harming herself.

 

[lawstudent]

My understanding is that she was referred by her Dr. at Tufts to the Dr. in Children's. She was taken by an ambulance and was supposed to have been admitted to the GI unit. Instead she somehow ended up in neurology.
She was not allowed to see the GI doctor she came there to see.
As for what ifs-what if moon was made of cheese?
Nobody has alleged she is trying to harm herself on purpose as far as I can tell.
She successfully lived at home for 14 years without harming herself.
She is accused of having a somatoform disorder. Not harming herself.

Somatoform sufferers typically often become incredibly distressed if their symptoms seem to be worsening. We don't know what she was accused of - somataform definitely, but the two aren't mutually exclusive. The condition implies mental distress. If they want her treated for it, then the treatment they want is for mental health issues, so clearly she is displaying some. If she was taken by ambulance, she was obviously having a medical crisis that could have exacerbated everything.

If her doctor actually referred her via ambulance to see a GI specialist, I can't see the hospital having her come in and then being like "nope you can't see him." Is it possible the doctor at Tufts sent her there for a more extensive diagnostic investigation, and tipped them off that there might be a mental component?