DC - Justina gets standing ovation from Congress

[sweetmom]

I just watched the piece again, its only about 8 minutes long and was produced and aired on the occasion of Justina's ordered release and return to her family.

Its a very short summary of the story and not meant to be investigative journalism, imo.

The part about the flu was mentioned because prior to that Justina had been assumed to have "mito" like her older sister Jessica and the flu is very difficult on people with "mito".

The reporter said that Justina's father said that the delivery to the emergency room was for insurance purposes. (And, as an aside, we know that insurance coverage has played a huge role in this whole story all along.)

The program was in the category HEALTH/SCIENCE PROGRAM/SPECIAL and tied with another piece from the same station.

I really couldn't guess why it stood out as deserving of a regional Emmy but, there it is.

Beau Berman's work was in the CONTINUING COVERAGE/No Time Limit Category.
WCVB won in that category as well.

I finally got to watch it. It may have won because the competition was weak.

I give WCVB some credit for tamping down the hysteria/sensationalizing so common in reports about this controversy. But they too left out important facts, such as that the Pelletiers were reported by Connecticut and Tufts docs to their respective state DCFs for refusing to consider any psychological component or treatment for Justina. These investigations did not lead to legal charges, but that could have had far more to do with the often-slipshod procedures and findings that overburdened DCF investigators are prone to than because the Pelletiers were doing things right.

The WCVBG report also plays up the dreadful-sounding information that Justina spent 16 months in BCH but neglected to say that BCH was ready to move her out after just a few months there as a first step to sending her home, but the family raised such a stink about all the interim facilities that BCH could not find a place to release her to for many, many months.

IMO, it's also quite telling that since Justina has been back in West Hartford for the past year, no statements or postings by the family mention mitochondrial disease or that Dr. Korson was dismissed from Tufts and his clinic was disbanded. He was their hero until that point, now he's evidently a non-person.

And her disease and current condition remain a troubling mystery to us all.

 

[i.b.nora]

Even though Justina's birthday was a few weeks ago now, they are asking her followers to send her a special birthday greeting via Personhood USA a group whose current sole purpose is to criminalize all abortions.

 

[sweetmom]

Even though Justina's birthday was a few weeks ago now, they are asking her followers to send her a special birthday greeting via Personhood USA a group whose current sole purpose is to criminalize all abortions.

Thanks for pointing this out. From the beginning of the publicizing of the case, the family has sought and received support from many ultra-conservative groups and individuals, such as Liberty Counsel, which was a big player in the Terri Schiavo case in Florida, and Glenn Beck and former US Rep Michele Bachmann, not to mention many conservative websites, blogs and media. The failed attempt to enact "Justina's Law" was a Bachmann endeavor, and it died when she left Congress. They all strove to link the alleged "kidnapping" to what they consider to be evil left-wing agendas by the hospital and the Mass. DCF, despite the lack of proof. So I am not surprised that they are embracing the Personhood movement and its far-right principles. Medicine and politics have been intertwined in this case from the get-go, by the family's choice.

 

[annahanna]

There is a hearing scheduled for today in the MA legislature for HB1469 - a/k/a Justina's Law.

SECTION 1:
Massachusetts General Laws Chapter 119 be amended to add the following new section 51I:

51I: (a) A parent or legal guardian shall not be charged with abusing or neglecting a child’s need for medical care if:

(i) the parent or legal guardian has sought medical care for the child from a licensed medical or mental health provider;

(ii) the licensed medical or mental health provider has made a diagnosis;

(iii) the licensed medical or mental health provider has prescribed a lawful course of treatment; and

(iv) the parent or legal guardian is following or willing to follow the recommended course of treatment.

(b) No mandatory reporter, as defined in Section 21 of this Chapter, shall file a report of abuse or neglect under Section 51 of this Chapter based solely on a parent’s or legal guardian’s decision to follow the recommended treatment of a licensed medical or mental health provider. A parent or legal guardian has the right to follow the advice and treatment plan of a licensed medical or mental health provider over a contrary opinion or recommended treatment plan of another licensed medical or mental health provider when the decision does not involve immediate life-threatening conditions. Even in the case of life-threatening conditions, the decision of the parent or legal guardian to follow the advice or treatment plan of a licensed medical or mental health provider shall not be overridden unless there is clear and convincing evidence to the contrary.



I'm not sure this would have actually helped in the Pelletier situation since Tufts had actually recommended mental health involvement and, in fact, reported the family to DCF for failing to follow through in their recommendations. Boston Children's then recommended mental health care, and reported the family to DCF for refusing.
Under section b, the proposed legislation states that decisions of licensed providers can not be overridden -even in life threatening situations - unless there is clear and convincing evidence to the contrary. We obviously don't have her medical file, but I suspect that there IS clear and convincing evidence that she does not have Mito for the following reasons. 1) They dropped Dr Korson almost immediately after regaining custody. 2) Korson has since been eliminated from his position at Tufts and the Mito Clinic there was abruptly closed. 3) No mention has been made of Mito since her parents regained control of her medical care and her many subsequent hospitalizations.


Just like Michelle Bachman's Bill, the proposed MA "Justina's Law" would have done nothing to prevent the Pelletier situation.

 

[Donjeta]

51I: (a) A parent or legal guardian shall not be charged with abusing or neglecting a child’s need for medical care if:

(i) the parent or legal guardian has sought medical care for the child from a licensed medical or mental health provider;

(ii) the licensed medical or mental health provider has made a diagnosis;

(iii) the licensed medical or mental health provider has prescribed a lawful course of treatment; and

(iv) the parent or legal guardian is following or willing to follow the recommended course of treatment.

So what does that mean exactly? let's say some kid has cancer and the parents refuse to take the oncologist's advice and treat her. If they then take her to an otolaryngologist who gives her a prescription for ear infection, and they give those drugs to the child and they're off the hook treating her for the cancer?

It seems kind of vague as not every licensed medical or mental health provider is capable of assessing and diagnosing all the possible things that may be wrong with a child, so how are they going to make sure of the child's safety if just one random shrink is enough?`

 

[sweetmom]

SECTION 1:
Massachusetts General Laws Chapter 119 be amended to add the following new section 51I:

51I: (a) A parent or legal guardian shall not be charged with abusing or neglecting a child’s need for medical care if: (i) the parent or legal guardian has sought medical care for the child from a licensed medical or mental health provider;

(ii) the licensed medical or mental health provider has made a diagnosis;

(iii) the licensed medical or mental health provider has prescribed a lawful course of treatment; and

(iv) the parent or legal guardian is following or willing to follow the recommended course of treatment.

My quick read of this proposed law suggests to me that it actually would have HURT the Pelletiers' argument, because they were NOT willing to follow the recommended course of treatment (psychiatric treatment) as urged by both Tufts and BCH. Therefore, they should have been reported (and they were, by both hospitals.) And keep in mind that there is no certainty that this bill will be passed in the Mass. legislature. But a few letters/emails to the legislators might be in order.

 

[Hiandmighty]

I don't see how this bill can pass.

 

[sweetmom]

"I don't see how this bill can pass."

If it were to pass, it would be because the legislators who voted for it saw some political gain for themselves by courting the "Free Justina!!" diehards.
Not because the bill has any intrinsic merit, and not, IMO, because it would have helped the Pelletiers, whose recalcitrant behavior doesn't seem to be protected by it. But if they think it's politically expedient to slap down BCH and mobilize the DCF and government haters, it will get at least some votes.
Depressing, but IMO, true.

 

[sweetmom]

There's a new pity-party plea for money on the Miracle website. It cites the family's travails of "lugging" Justina from the car to bed to the bathroom (what happened to the wheelchair?) and their tough physical, mental and emotional problems. (It does not consider how many of those problems they have caused themselves, of course.)
And it adds that their insurance has changed (doesn't explain how or why) and now only covers a limited amount of their costs, and the poster adds that she knows much more but isn't sure what she is allowed to tell us. She also says those who ask why there is no lawsuit yet should realize it takes a lot of time and they should just be patient.

But wait! That's not all! If their followers would just, you know, send them more money......

Shameless, IMO.

 

[i.b.nora]

I was browsing the Miracle site this morning before realizing the latest 'pity party plea' has already been reported here. Thanks, Sweetmom. Unbelievable! Maybe the wheelchair was being rented, and insurance won't cover it anymore?

I also followed one of their recent links to an interesting article in a local Ayer, Massachusetts newspaper which had a report on the most recent news on 'Justina's Law'. There are a couple of things in the article that stood out to me:

Pelletier family pushes for passage of 'Justina's Law'
Publishing
POSTED: 06/24/2015 04:59:49 PM EDT
By Andy Metzger
STATE HOUSE NEWS SERVICE

STATE HOUSE -- Hoping to make parents the arbiter when medical professionals disagree about the care of a child and to avoid the repeat of a saga that embroiled the state's child protection department and a family from Connecticut, lawmakers on Wednesday pushed for "Justina's Law."

The bill filed by Republican Rep. Marc Lombardo, of Billerica, would also prohibit parents from being charged with abuse or neglect if they are following a lawful course of treatment recommended by a medical or mental health provider.

*

"Jennifer Pelletier, who is Justina's oldest sister, told the committee that her youngest sister Justina has had medical issues since she was born and she is now in worse condition than she had been before."

"I used to teach her ice skating," Jennifer told the committee. She said, "Now she cannot stand on her own and it's heartbreaking seeing what's happening to her."

*

"He (Pelletier) said that a judge placed him under a gag order after a Fox station in Hartford ran promos for a story about his case. He decided to speak out in February 2014.

"Against legal advice, I decided to break the gag order, and thank God I did," Pelletier said.

Rep. James Lyons, an Andover Republican, prompted some of Pelletier's account with questions from his seat on the committee."

*

"During an April 2014 House budget debate, a push by Lyons and Lombardo to attach a budget rider to override a court decision faced a rebuke from some colleagues who argued the Legislature should not interfere with judicial decisions."​

Read more: http://www.nashobapublishing.com/ci...ily-pushes-passage-justinas-law#ixzz3eYoRLzuY

Anyhow, nothing earthshattering but if they file a lawsuit against Boston Children's Hospital, every single thing they say anywhere will be scrutinized, as it should be.

 

[sweetmom]

IMO, it is indeed heartbreaking to see what has happened to Justina, but none of it is the fault of Boston Children's Hospital. It would likely destroy the Pelletiers' carefully crafted self-image as victims deserving of help and money, but I wish they would go ahead with the lawsuit, just so the rest of us could finally hear and see objective testimony about Justina's lifelong health problems and the ways (none effective, IMO) that the family has tried to handle them. But I am betting that lawsuit will never be filed, and if it is, they will lose.

As to the "now she cannot stand on her own" accusation: we've all seen the video the family posted to the Miracle page. In it, you can clearly see Justina shift the position of her legs by herself in order to get into a better stance from which to toss the ball to the dog. This was filmed shortly after she left BCH and the interim facilities. The family has been quoted saying Justina could not walk on her own BEFORE being taken to BCH, and in the video, we see her standing on her own AFTER being at BCH. If she can't stand up now, IMO the blame lies with the family, which has had her back for the past year.

 

[annahanna]

I am surprised that we missed this - or maybe I just missed posts mentioning this.

Apparently the Pelletier family scheduled, and then canceled, a news conference on the steps of the MA State House. It was scheduled for June 18th to mark the one year anniversary of Justina's return to her parents' custody. From : http://www.prnewswire.com/news-rele...ne-year-after-justinas-release-300099464.html
"The Pelletiers will discuss their challenges as a family over the past year, their efforts in Washington, D.C. and across the nation to protect children and parental rights, the horrible treatment of Justina by the State of Massachusetts, and future plans to protect families in similar situations."

I found this on the Free Justina Pelletier From Boston Children's Hospital Facebook page. (I can't believe that is still active!). The reason for the cancelation was not disclosed. There was just a post on Facebook dated 6/17 along with a statement that it was "still developing."

 

[sweetmom]

I am surprised that we missed this - or maybe I just missed posts mentioning this.

Apparently the Pelletier family scheduled, and then canceled, a news conference on the steps of the MA State House. It was scheduled for June 18th to mark the one year anniversary of Justina's return to her parents' custody. From : http://www.prnewswire.com/news-rele...ne-year-after-justinas-release-300099464.html
"The Pelletiers will discuss their challenges as a family over the past year, their efforts in Washington, D.C. and across the nation to protect children and parental rights, the horrible treatment of Justina by the State of Massachusetts, and future plans to protect families in similar situations."

I found this on the Free Justina Pelletier From Boston Children's Hospital Facebook page. (I can't believe that is still active!). The reason for the cancelation was not disclosed. There was just a post on Facebook dated 6/17 along with a statement that it was "still developing."

Interesting. I missed that too, and I have to admit to spending an embarrassing amount of time digging around for updates on the Pelletier Saga, which I have come to regard as a kind of novel-in-progress we are all reading.

I meant that to be amusing, but really, this story is sad. For example, a recent comment on the Miracle site proudly says that they canceled an appointment with "these same doctors" for their grandson, after reading all that misleading BS about Justina. So some poor little kid is NOT receiving treatment that might well be crucial for him because the adults in the family are gullible and poorly informed. That, IMO, is the worst fallout from this whole mess: the frightening of people away from BCH for no damn good reason.

 

[annahanna]

I saw that comment too. I found it particularly disturbing as I am currently back at BCH with my child - who is undergoing treatment under the guidance of some of "these same doctors." I was talking to another mom this morning who was telling me how terrified she was that her child would be "kidnapped just like Justina." I tried to tell her some of the facts around the Pelletier situation, but she was not interested in hearing anything but the kidnapping myth. Sad.

We can only hope that the parents who live in fear of this excellent hospital are at least seeking care for their kids elsewhere.

 

[sweetmom]

I saw that comment too. I found it particularly disturbing as I am currently back at BCH with my child - who is undergoing treatment under the guidance of some of "these same doctors." I was talking to another mom this morning who was telling me how terrified she was that her child would be "kidnapped just like Justina." I tried to tell her some of the facts around the Pelletier situation, but she was not interested in hearing anything but the kidnapping myth. Sad.

We can only hope that the parents who live in fear of this excellent hospital are at least seeking care for their kids elsewhere.

I'm so sorry to hear that your child is back in the hospital, and I hope things are going as well as they can. I'm sure all the posters here agree.

And how sad to hear proof that this mis-reported, misunderstood case is poisoning the minds of other adults who are suffering needless fear or forgoing the right medical care for their sick children. It's bad enough, IMO, what the Pelletier's behavior has done to their own daughter. It's unconscionable to think they may have, however inadvertently, harmed other people's children in the process of making themselves out to be martyrs and the hospital and state as villians.

 

[sweetmom]

Oops. That should be Pelletiers' (not Pelletier's) and villains (not villians). I need a good copy editor.
Happy 4th of July, every one!

 

[sweetmom]

Oh boy. The Miracle site has posted a story about the proposed Mass. Justina's Law from The Valley Patriot newspaper that makes Beau Berman's one-sided reporting look like a model of evenhandedness.
This new piece, written with over the top hysteria, is accompanied by many comments that reiterate all the BS the family and its supporters are still spewing. IMO, the commenters have a right to their opinions, just as we do, but the reporter can and should be faulted for promulgating the family's side of the story with no corroboration or rebuttal by anyone else.
The more things change, the more they stay the same....

 

[i.b.nora]

The article was written by the former doctor who follows the family around like a household pet. He has written numerous other articles about or for them as well.

 

[i.b.nora]

See these prior posts regarding Bharani Padmanabhan:

Post #1513: http://www.websleuths.com/forums/sh...ital-to-bring-teen-home-for-Christmas/page101

Post #1522: http://www.websleuths.com/forums/sh...ital-to-bring-teen-home-for-Christmas/page102

With some of the other posts surrounding those, of interest as well.

 

[sweetmom]

Thanks so much, I.B., for the background info on the Valley Patriot piece, which is an opinion column, not a reported story as I had assumed. Not that the writers of opinion pieces are ethically exempt from presenting truthful and balanced information, and the rantings by this doctor sure do not do that. He apparently has serious issues with "Harvard hospitals" and DCF, not unlike the Liberty Counsel folks and others who see conspiracies and evil agendas everywhere. The Pelletier case attracts them like flies to honey. It must be the intoxicating aroma of paranoia.