Family battling Children’s Hospital to bring teen home for Christmas #2

[MyBelle]

I am not familiar with the other cases you sited but I have followed this case closely and it should never have happened, imo. Thousands of people in our country agree with that.

Never have happened? Reporting was mandatory. There are thousands of people who squawk about anything and everything and think the laws don't apply to them. Free speech and all that. I just change the channel.

The sad reality remains that if children didn't need protection, the agencies wouldn't exist.

JMO

 

[screecher]

I'm not getting your point. Justina's situation was triggered by the mandatory reporting by hospitals and doctors of suspected child abuse. Justina's doctors had reported it three times in two states. I think it is unrealistic to complain about something they were required by law to do.

All of your links are about Native Americans and decades of unfairness across the board. I'm not sure why that matters. No matter race, religion, gender, age, etc., a hospital and physicians are required by law to report suspected abuse.

JMO

BBM

My point being, historically, governments, their agencies and entities with self-interests, have always and probably will continue to act in a manner of superiority because of the power they wield. It's the nature of the beast.

IMO, what happened with this family is incomprehensible.

Taking a child for medical care should NEVER end like this.

 

[CathyinTexas]

I'm not getting your point. Justina's situation was triggered by the mandatory reporting by hospitals and doctors of suspected child abuse. Justina's doctors had reported it three times in two states. I think it is unrealistic to complain about something they were required by law to do.

All of your links are about Native Americans and decades of unfairness across the board. I'm not sure why that matters. No matter race, religion, gender, age, etc., a hospital and physicians are required by law to report suspected abuse.

JMO

I can't believe that anyone would consider assertive and proactive parents seeking the best medical treatment for their child, abuse. Doctors are taking advantage of this power they have, when they are questioned or disputed, or when someone wants another opinion, they call it doctor shopping, which is supposed to be abuse? Preposterous.

 

[MyBelle]

BBM

My point being, historically, governments, their agencies and entities with self-interests, have always and probably will continue to act in a manner of superiority because of the power they wield. It's the nature of the beast.

IMO, what happened with this family is incomprehensible.

Taking a child for medical care should NEVER end like this.

Unfortunately it ends like this all the time. In fact, some cases of medical abuse result in criminal charges to the parents. Hospitals must report their suspicions to authorities. That's the way is has to be. The focus is on what is best for the child.

JMO

 

[MyBelle]

I can't believe that anyone would consider assertive and proactive parents seeking the best medical treatment for their child, abuse. Doctors are taking advantage of this power they have, when they are questioned or disputed, or when someone wants another opinion, they call it doctor shopping, which is supposed to be abuse? Preposterous.

If you take the child to a hospital and she is admitted, you are giving them oversight of the child. No different than sending a child to school. That's the way it has always worked. Doctors, teachers, all are mandatory reporters of suspected child abuse. Every state has a hotline, the need for intervention is so great.

JMO

 

[Gardenlady]

I am frankly dumbfounded that somehow people think that just because the Pelletiers come off as (semi) normal looking and sounding, that it is impossible that they committed any type of abuse or neglect of their daughter.

Abusive and negligent parents come in all colors, from all classes, and all places. Sometimes abuse is hidden under a facade of medical concern, even - look at one case here now that involves a person who once posted here, under the guise of a concerned mom of sickly children.

Sometimes abuse is found when Kids are brought to the doctor, or hospital.

Abuse is not always "simply" hitting or kicking or failing to feed and clothe a child properly, either.

That people are willing to believe in some sort of state wide conspiracy between eeeevil judge, eeevil Children's Hospital, eeevil doctors, eeeevil DCF workers, eeeevil Guardian ad litem, eeevil CT DCF rather than even entertain the possibility that something was going on (you know, because none of the people who believe in this conspiracy actually lived with or observed the Pelletiers and Justina) is bizarre.


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[CathyinTexas]

I am frankly dumbfounded that somehow people think that just because the Pelletiers come off as (semi) normal looking and sounding, that it is impossible that they committed any type of abuse or neglect of their daughter.

Abusive and negligent parents come in all colors, from all classes, and all places. Sometimes abuse is hidden under a facade of medical concern, even - look at one case here now that involves a person who once posted here, under the guise of a concerned mom of sickly children.

Sometimes abuse is found when Kids are brought to the doctor, or hospital.

Abuse is not always "simply" hitting or kicking or failing to feed and clothe a child properly, either.

That people are willing to believe in some sort of state wide conspiracy between eeeevil judge, eeevil Children's Hospital, eeevil doctors, eeeevil DCF workers, eeeevil Guardian ad litem, eeevil CT DCF rather than even entertain the possibility that something was going on (you know, because none of the people who believe in this conspiracy actually lived with or observed the Pelletiers and Justina) is bizarre.


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I agree with most of what you stated here. But we are talking about Boston, MA/Harvard. That is where it started I believe. You don't argue or question them if you want to maintain the status quo. That is just my opinion of course. But the truth is, the players in this case, as has been shown before, benefitted from the action of the neurologist, psychologist, and then the Psychiatrist who never met or talked with Justina's decision. DCF gets funding from federal, state, local and also the parents in most cases, court ordered child support by the parents to the state. The hospital players in this case most likely did get funding for Justina's unusually long stay in a hospital psych ward. I think it was a win/win for both the hospital and DCF. I still believe this should never have happened.

 

[jjenny]

I am dumbfounded people still argue they committed some sort of abuse, when there have been zero evidence provided of any such abuse. This so-called abuse was parents wanting to follow Tuft's protocol for treatment.
Well, guess what? She is now treated by Tuft's again.
So, where is the abuse?
Nowhere. This child clearly was never abused by her parents.

 

[MyBelle]

I agree with most of what you stated here. But we are talking about Boston, MA/Harvard. That is where it started I believe. You don't argue or question them if you want to maintain the status quo. That is just my opinion of course. But the truth is, the players in this case, as has been shown before, benefitted from the action of the neurologist, psychologist, and then the Psychiatrist who never met or talked with Justina's decision. DCF gets funding from federal, state, local and also the parents in most cases, court ordered child support by the parents to the state. The hospital players in this case most likely did get funding for Justina's unusually long stay in a hospital psych ward. I think it was a win/win for both the hospital and DCF. I still believe this should never have happened.

With all due respect, if you don't want to take a physician's advice, that's entirely up to you. But no doctor is allowed to ignore signs of abuse of a vulnerable person no matter the age of the patient.

Blaming any of what happened on Harvard or the State rather than the parents is laughable at this point.

JMO

 

[annahanna]

I am dumbfounded people still argue they committed some sort of abuse, when there have been zero evidence provided of any such abuse. This so-called abuse was parents wanting to follow Tuft's protocol for treatment.
Well, guess what? She is now treated by Tuft's again.
So, where is the abuse?
Nowhere. This child clearly was never abused by her parents.

Things are not as clear as you would like to believe. There obviously is evidence that Justina Pelletier has been medically abused or neglected by her parents. With no evidence, they would not have been reported multiple times by medical providers to DCF. With no evidence, the judge would not have ruled multiple times that Justina's Parents were not fit to care for her medical needs. With no evidence, the guardian ad litem would not have recommended that Justina NOT be returned to her parents' custody. Evidence of abuse or neglect has been presented (multiple times at this point) in court. Since the court records are sealed and the professionals are prohibited from releasing medical information about Justina, the only information you are reading is coming from the parents directly or from a small amount of leaked documents. It is in the parents' best interest to continue to claim that no evidence has been presented. Considering the circumstances and events, that is simply not possible.

You are assuming that the parents were following a Tufts' "protocol for treatment." The parents have claimed repeatedly and loudly that they "only wanted to follow the Tufts physicians' medical instructions." Considering the fact that the Tufts medical staff had previously filed a report with DCF alleging medical abuse or neglect, that claim does not exactly ring true. The Pelletier's have shown considerable evidence that they want to be able to pick and choose which diagnosis to embrace and which treatment to provide to their minor child. That would be fine if Justina did not have significant medical needs. It is not fine, and therefor it is neglect, if they are choosing to ignore and refusing to treat a life threatening or emotionally damaging diagnosis. Obviously, the judge believes that the evidence indicates medical abuse or neglect.

You are also making some assumptions about the Tufts Medical Plan that you can not possibly be privy to - mainly because the Pelletier family has said as recently as today that they have not yet met with the Tufts doctors and therefore do not know the details of the Tufts Medical Center medical care plan. As stated on the Miracle for Justina Facebook page "...still waiting on the tufts meeting!!" It is very possible and imo highly probable that the Tufts plan (which would be newly developed after Justina's recent appointments and evaluations there) will contain much more then "treat for Mito using exactly the plan favored by the parents." The Tufts plan may or may not confirm a Mito diagnosis - after all, Dr Korson has been quoted as stating that Justina had "Suspected Mitochondrial Disease." In medical-ese, that indicates an unconfirmed possible diagnosis. The plan likely calls for continued psychological counseling since Tufts was recommending psychological counseling prior to Justina's admission to Boston Children's. The plan may very well mirror the Boston Children's Hospital care plan that the Pelletier parents vehemently objected to. We will know that to be the case if the parents start claiming that the doctors at Tufts were influenced by, intimidated by, or bullied by Harvard/BCH/ECF etc.

 

[annahanna]

DCF gets funding from federal, state, local and also the parents in most cases, court ordered child support by the parents to the state. The hospital players in this case most likely did get funding for Justina's unusually long stay in a hospital psych ward. I think it was a win/win for both the hospital and DCF.

DCF is certainly government funded and in some cases, although certainly not all, parents do pay child support. In this case, there is no reason to believe that such an order has been levied against the Pelletiers. They have been highly vocal about every perceived slight in this case. Can anyone honestly say that the Pelletiers would have been silent about a child support order? The hospital would have been paid slightly less then half of the billed rate for Justina's stay as soon as DCF was given custody and she was put on MassHealth. This has not been a moneymaking opportunity for DCF or BCH.

 

[jjenny]

DCF is certainly government funded and in some cases, although certainly not all, parents do pay child support. In this case, there is no reason to believe that such an order has been levied against the Pelletiers. They have been highly vocal about every perceived slight in this case. Can anyone honestly say that the Pelletiers would have been silent about a child support order? The hospital would have been paid slightly less then half of the billed rate for Justina's stay as soon as DCF was given custody and she was put on MassHealth. This has not been a moneymaking opportunity for DCF or BCH.

Parents might have not paid. But taxpayers sure did. The bill to keep her in DCF custody could be close to 2 millions.
Frankly I don't think that is money well spend.

 

[jjenny]

Things are not as clear as you would like to believe. There obviously is evidence that Justina Pelletier has been medically abused or neglected by her parents. With no evidence, they would not have been reported multiple times by medical providers to DCF. With no evidence, the judge would not have ruled multiple times that Justina's Parents were not fit to care for her medical needs. With no evidence, the guardian ad litem would not have recommended that Justina NOT be returned to her parents' custody. Evidence of abuse or neglect has been presented (multiple times at this point) in court. Since the court records are sealed and the professionals are prohibited from releasing medical information about Justina, the only information you are reading is coming from the parents directly or from a small amount of leaked documents. It is in the parents' best interest to continue to claim that no evidence has been presented. Considering the circumstances and events, that is simply not possible.

You are assuming that the parents were following a Tufts' "protocol for treatment." The parents have claimed repeatedly and loudly that they "only wanted to follow the Tufts physicians' medical instructions." Considering the fact that the Tufts medical staff had previously filed a report with DCF alleging medical abuse or neglect, that claim does not exactly ring true. The Pelletier's have shown considerable evidence that they want to be able to pick and choose which diagnosis to embrace and which treatment to provide to their minor child. That would be fine if Justina did not have significant medical needs. It is not fine, and therefor it is neglect, if they are choosing to ignore and refusing to treat a life threatening or emotionally damaging diagnosis. Obviously, the judge believes that the evidence indicates medical abuse or neglect.

You are also making some assumptions about the Tufts Medical Plan that you can not possibly be privy to - mainly because the Pelletier family has said as recently as today that they have not yet met with the Tufts doctors and therefore do not know the details of the Tufts Medical Center medical care plan. As stated on the Miracle for Justina Facebook page "...still waiting on the tufts meeting!!" It is very possible and imo highly probable that the Tufts plan (which would be newly developed after Justina's recent appointments and evaluations there) will contain much more then "treat for Mito using exactly the plan favored by the parents." The Tufts plan may or may not confirm a Mito diagnosis - after all, Dr Korson has been quoted as stating that Justina had "Suspected Mitochondrial Disease." In medical-ese, that indicates an unconfirmed possible diagnosis. The plan likely calls for continued psychological counseling since Tufts was recommending psychological counseling prior to Justina's admission to Boston Children's. The plan may very well mirror the Boston Children's Hospital care plan that the Pelletier parents vehemently objected to. We will know that to be the case if the parents start claiming that the doctors at Tufts were influenced by, intimidated by, or bullied by Harvard/BCH/ECF etc.

Boston Children's wanted her taken off her meds, including her meds for a rapid heart rate. I very much doubt Tuft's plan is going to mirror Boston Children's plan. And she had psychological counseling long before Tufts recommended anything.
She had a psychologist in CT she was seeing for a number of years.
I am hoping that DCF is seeing the writing on the wall. Even if some posters here won't.

 

[Love143]

Things are not as clear as you would like to believe. There obviously is evidence that Justina Pelletier has been medically abused or neglected by her parents. With no evidence, they would not have been reported multiple times by medical providers to DCF. With no evidence, the judge would not have ruled multiple times that Justina's Parents were not fit to care for her medical needs. With no evidence, the guardian ad litem would not have recommended that Justina NOT be returned to her parents' custody. Evidence of abuse or neglect has been presented (multiple times at this point) in court. Since the court records are sealed and the professionals are prohibited from releasing medical information about Justina, the only information you are reading is coming from the parents directly or from a small amount of leaked documents. It is in the parents' best interest to continue to claim that no evidence has been presented. Considering the circumstances and events, that is simply not possible.

You are assuming that the parents were following a Tufts' "protocol for treatment." The parents have claimed repeatedly and loudly that they "only wanted to follow the Tufts physicians' medical instructions." Considering the fact that the Tufts medical staff had previously filed a report with DCF alleging medical abuse or neglect, that claim does not exactly ring true. The Pelletier's have shown considerable evidence that they want to be able to pick and choose which diagnosis to embrace and which treatment to provide to their minor child. That would be fine if Justina did not have significant medical needs. It is not fine, and therefor it is neglect, if they are choosing to ignore and refusing to treat a life threatening or emotionally damaging diagnosis. Obviously, the judge believes that the evidence indicates medical abuse or neglect.

You are also making some assumptions about the Tufts Medical Plan that you can not possibly be privy to - mainly because the Pelletier family has said as recently as today that they have not yet met with the Tufts doctors and therefore do not know the details of the Tufts Medical Center medical care plan. As stated on the Miracle for Justina Facebook page "...still waiting on the tufts meeting!!" It is very possible and imo highly probable that the Tufts plan (which would be newly developed after Justina's recent appointments and evaluations there) will contain much more then "treat for Mito using exactly the plan favored by the parents." The Tufts plan may or may not confirm a Mito diagnosis - after all, Dr Korson has been quoted as stating that Justina had "Suspected Mitochondrial Disease." In medical-ese, that indicates an unconfirmed possible diagnosis. The plan likely calls for continued psychological counseling since Tufts was recommending psychological counseling prior to Justina's admission to Boston Children's. The plan may very well mirror the Boston Children's Hospital care plan that the Pelletier parents vehemently objected to. We will know that to be the case if the parents start claiming that the doctors at Tufts were influenced by, intimidated by, or bullied by Harvard/BCH/ECF etc.

Just a lurker here, but had to come out to say "Great post!"

And since I am posting a big THANK YOU! to the ones who post what I am too shy to say.

 

[MyBelle]

Parents might have not paid. But taxpayers sure did. The bill to keep her in DCF custody could be close to 2 millions.
Frankly I don't think that is money well spend.

I agree it wasn't money well spent from the perspective the parents weren't taxpayers. But the State's duty was and still is to protect and care for Justina just as they protect and care for the thousands of other children who have parents who refuse to care for their children.

JMO

 

[annahanna]

Parents might have not paid. But taxpayers sure did. The bill to keep her in DCF custody could be close to 2 millions.
Frankly I don't think that is money well spend.

I agree that this has not been money well spent. It would have been far more cost effective if the parents had obtained appropriate medical care for their child without DCF involvement and it would have been less expensive for DCF if the parents had not blocked the child's transfer to a less expensive facility by threatening to sue any facility that agreed to take her.

The $2,000,000 cost that is being tossed around came from a statement from Lou Pelletier. As is typical of many of his statements, this is a gross exaggeration. BCH has stated that the average billed cost of inpatient treatment in Bader 5 is $2,000 per day. MassHealth actually pays approximately 1/2 that amount. Justina was inpatient at BCH for 341 days (02/10/13 - 01/17/14) for a cost of $341,000. She has been in a step down facility (Wayside or JRI) for 123 days as of today. The average reimbursement through Mass Health for that type of facility is $250 per day for a cost of $30,750. MassHealth has likely spent $10,000 (or less) on miscellaneous testing and $10,000 (likely less) on medications. This would indicate a medical and housing cost of $391,750. That is certainly a lot of money, but it is not any where near $2,000,000.

 

[Gardenlady]

No one is gettin rich off Masshealth. I see the bills/payments. Sadly many providers will not accept Masshealth patients because they feel the reimbursement rate is too low.

Edit - to clarify my point lol... The idea that anyone at all is making money from this is ludicrous. As is the idea that it even approaches Lou's exaggerated claims. Further, I did the math a while back, and even if the figure were true, it works out to less than $5 per taxpayer. Speaking as a ACTUAL mass taxpayer (unlike Lou), I'm quite happy to contribute such a small amount to any child in need of services.

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[jjenny]

I agree that this has not been money well spent. It would have been far more cost effective if the parents had obtained appropriate medical care for their child without DCF involvement and it would have been less expensive for DCF if the parents had not blocked the child's transfer to a less expensive facility by threatening to sue any facility that agreed to take her.

The $2,000,000 cost that is being tossed around came from a statement from Lou Pelletier. As is typical of many of his statements, this is a gross exaggeration. BCH has stated that the average billed cost of inpatient treatment in Bader 5 is $2,000 per day. MassHealth actually pays approximately 1/2 that amount. Justina was inpatient at BCH for 341 days (02/10/13 - 01/17/14) for a cost of $341,000. She has been in a step down facility (Wayside or JRI) for 123 days as of today. The average reimbursement through Mass Health for that type of facility is $250 per day for a cost of $30,750. MassHealth has likely spent $10,000 (or less) on miscellaneous testing and $10,000 (likely less) on medications. This would indicate a medical and housing cost of $391,750. That is certainly a lot of money, but it is not any where near $2,000,000.

Parents were seeking appropriate medical care for their child.
Nobody can point out to me as to what exactly was not appropriate.
I am not going to just accept that there is some super duper secret information we just don't know without a shred of evidence to support that claim.

 

[annahanna]

Boston Children's wanted her taken off her meds, including her meds for a rapid heart rate. I very much doubt Tuft's plan is going to mirror Boston Children's plan. And she had psychological counseling long before Tufts recommended anything.
She had a psychologist in CT she was seeing for a number of years.
I am hoping that DCF is seeing the writing on the wall. Even if some posters here won't.

The parents distributed a copy of the initial care plan that they were presented with in February 2013. That initial plan did indicate that many of her medications would be stopped including the one you mentioned. It also listed a great deal of behavioral and psychological intervention including the family counseling that the parents have repeatedly rejected both before and after BCH involvement. However, the parents have stated repeatedly that they have not been updated on her medications or treatment throughout this ordeal. If that is true, they do not know what changes were made to the BCH care plan over the year+ that she was under BCH care. They also do not know what the Tufts care plan is at this point. You are certainly free to doubt that the Tufts plan will be similar to the BCH plan, but until those plans become public (truly public - not just statements by Lou Pelletier) there is just no way to know. Having dealt with both Tufts Floating Hospital for Children and Boston Children's Hospital for medical care, I can say that the doctors at both institutions tend to think alike and agree on appropriate medical care far more often then they disagree. You do realize that it is rare for a hospital to develop an overall medical care plan for every aspect of a child's care? That is generally only done in cases where there has been a significant problem in the past. It is likely that there was not a formal "Tufts plan" for Justina's overall care before this ordeal started. (Certainly Dr Korson had a treatment protocol in mind, her other doctors had treatment protocols they were following - but not a cohesive written total care plan like what has now been developed.) It is also likely that the newly developed Tufts plan has many similarities to the BCH plan (in my opinion).

 

[Donjeta]

JMO when the medical records are not public, and they usually aren't, it goes without saying that there is a whole lot information that we just don't know.