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

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  • #541
"We know exactly what the doctors at Tufts found so concerning"

you are convinced that you know everything important that there is to know about this case and that there is nothing you could find out that would change your mind in any way.

you think you are being logical and factual but you are so heavily biased that you cant see things clearly.

i still don't know if children's made the right decisions in this case, but i know that there is a whole side to this story that i know very little about and i would love to hear more of it.

it doesn't matter how many times you repeat that this case is mainly about "2 differing medical opinions and the family should have the right to choose their course of action"... it wont make it true.
 
  • #542
"We know exactly what the doctors at Tufts found so concerning"

you are convinced that you know everything important that there is to know about this case and that there is nothing you could find out that would change your mind in any way.

you think you are being logical and factual but you are so heavily biased that you cant see things clearly.

i still don't know if children's made the right decisions in this case, but i know that there is a whole side to this story that i know very little about and i would love to hear more of it.

it doesn't matter how many times you repeat that this case is mainly about "2 differing medical opinions and the family should have the right to choose their course of action"... it wont make it true.


Family has the right to decide which medical opinion to follow-that's the law.
They shouldn't be forced to follow protocol designed by Children's or have their child removed from them.
 
  • #543
It could simply be that there was not enough evidence. Could be perfectly innocent or guilty.


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Only that's not how DCF operates. DCF doesn't have the same standards as criminal justice system.
 
  • #544
"We know exactly what the doctors at Tufts found so concerning"

you are convinced that you know everything important that there is to know about this case and that there is nothing you could find out that would change your mind in any way.

you think you are being logical and factual but you are so heavily biased that you cant see things clearly.

i still don't know if children's made the right decisions in this case, but i know that there is a whole side to this story that i know very little about and i would love to hear more of it.

it doesn't matter how many times you repeat that this case is mainly about "2 differing medical opinions and the family should have the right to choose their course of action"... it wont make it true.[/QUOTE

It seems that many totally disregard the fact that this young woman (Justina will turn 16 in May) has been deprived of all of her civil rights. It has been stated in the press that she has not received an education (while in BCH psych ward for 11 months), been allowed contact with her peers, or allowed contact with clergy. This is what is most concerning. She has been locked away from society for a long time. This is what we need to be concerned about, imo. There is no doubt that the players in this case do not want Justina talking to anyone, so it is clearly consciousness of guilt on their part, imo.
 
  • #545
I don't believe she isn't receiving any sort of education.

Even in children's locked psychiatric crisis center ( which is relatively short term...not a year or more) a tutor comes.

Where has this denial of clergy claim come from?


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  • #546
  • #547
There are teachers on Bader 5 as well.

A: Part of the day on Bader 5 is dedicated to school. There are two full-time teachers on the unit, one for grades 1-6 and one for grades 7-12, who will help gather assignments from your child's school so your child can keep up with some schoolwork while on the unit.

http://www.childrenshospital.org/ce...-_-z/psychiatry-inpatient-service-program/faq

The teachers will help gather assignments from the child's school? So she can keep up with her schoolwork?
So she is supposed to study by herself, assuming they even bothered to contact her CT school?
She is already a special needs student. She has been out of her school for over a year.
What a good deal for her.
 
  • #548
The teachers will help gather assignments from the child's school? So she can keep up with her schoolwork?

So she is supposed to study by herself, assuming they even bothered to contact her CT school?

She is already a special needs student. She has been out of her school for over a year.

What a good deal for her.


Practically a private tutor!
Teacher to student ratio 1 to 1 for instruction. Not too shabby!

Some people pay big money for that personal attention



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  • #549
The teachers will help gather assignments from the child's school? So she can keep up with her schoolwork?
So she is supposed to study by herself, assuming they even bothered to contact her CT school?
She is already a special needs student. She has been out of her school for over a year.
What a good deal for her.


I don't suppose anyone thought that the education you get in psychiatric inpatient care ideally prepares you for university but although the website said that the teachers will help gather assignments I didn't take it to mean that's necessarily all they do. I can't see putting the kids in a room, throwing some books at them and then expecting them to study all by themselves while the teacher drinks coffee in an office across the corridor working most of the time since all the children in an inpatient psychiatric setting tend to have special needs.
 
  • #550
Practically a private tutor!
Teacher to student ratio 1 to 1 for instruction. Not too shabby!

Some people pay big money for that personal attention



Sent from my iPhone using Tapatalk

Why pay when you can get yourself locked up in a secure psychiatric ward and get it for free?
 
  • #551
Then it really makes no sense that MA DCF can remove a child from loving parents, stuck that child in psychiatric ward, and keep that child in custody for over year. When that child is not even a resident of MA.
...snipped by me for focus
I am not sure what kind of education the child is getting if any.
emphasis mine

At this stage of her academic life, IMO, it's vital that in the future Justina be given the options available to young people who graduate with a solid secondary education. In order for her to have that kind of background, IMO, she needs to believe that she will be able to finish high school and continue on to post-secondary studies, and guidance with the preparation to do just that.

According to BCH promotional material, teachers are an integral part of the Bader 5 treatment team.

"There are two teachers on Bader 5, one for the school-age program and one for adolescents. They can work with your child's school to better understand your child's learning needs, facilitate a plan to help your child complete assignments while hospitalized and make recommendations for additional services or testing your child may need. They provide tutoring to patients while they are hospitalized." (http://www.childrenshospital.org/ce...tient-service-program/about-us/treatment-team)

Since the 16 bed Bader 5 unit was designed to be a facility for short term diagnostic stays, this kind of tutoring might be adequate. However, given the extreme length of time in which BCH kept Justina locked up and isolated in Bader 5, the resources available would not have provided the information, support, and stimulation normally expected of an educational program covering nearly two academic years of a patient's young life. Particularly those last two years of instruction before that child enters secondary school. This is a very important time during which the prerequisites are chosen for courses which will meet the criteria for entering post-secondary institutes of the young patient's choice. The probable admission requirements for a university must be included when planning the Grade 10, 11, and 12 courses that must be passed. So, the planning must start in Grade 8 and 9--which courses must be passed in Grade 9 in order to begin the secondary progression in that subject from 10 to 11 to 12 (and possibly 13 depending on the district).

According to BCH's document Bader 5: Helping with your child's psychiatric hospitalization: a practical guide for parents (http://www.childrenshospital.org/~/...Psychiatry Inpatient Service/parentguide.ashx), three hours each week day are allotted to school work. (Therapy takes up four hours week afternoons.) Presumably the scheduling was constructed for children who are in Bader 5 for a more usual stay measured in days rather than months, or years. Given that the mix of ages and grades will be fluid, and the number of children in Bader 5 may differ on any given day, a tutor might be responsible for from one to sixteen children. That is, a student might have access to between the attention of a tutor prepared to work with adolescents for from three hours (just one patient in the adolescent category), to 11.25 minutes of individual attention each day (all beds taken by adolescents.).

JMO, but being isolated from friends, family, and religious sacraments for thirteen months is too high price to pay for "free" tutoring. As is being forced to ask permission for the bathroom to be unlocked every time it's needed, and possibly being observed during those private functions. As is listening to loved ones being denigrated by strangers. As is being treated with medications and procedures without giving personal consent, but with the speedy consent given instead by an unquestioning bureaucratic guardian. As is being cut off from fresh air, sunlight, and the replacement of familiar working medications with new (possibly experimental) drugs. As is having to deal with side effects of new regimes. No tutor on earth is worth the physical and emotional pain that this past year has cost Justina.

The opportunities to explore the academic elements of research, reading, writing, discussion, debate, as well as studying both required and optional arts and science disciplines are part of a regular school curriculum. (Hard to cram these elements a three-hour session, let alone 22 minutes if one is sharing a tutor with seven other children.) As well, there are also cultural aspects to an education which are incredibly important--students learn from their peers as well as from their teacher. They learn through participation in arts projects and in sports activities, through attending performances and visiting galleries, watching sports events and participating in museum programs. They learn about their community through field trips and listening to guest speakers. There are distance education programs available which enrich the educational experiences children who do not attend traditional schools. There are many resources available to children who are home schooled. I wonder if the education DCF and BCH provided in Bader 5 included these resources. Of course, this would have required that Justina would be allowed to use a computer or watch television programs and Bader 5 did not allow Justina to have a cell phone, a television, an iPad or other access to the internet. (http://www.dailymail.co.uk/news/art...tal-against-parents-wishes-moved-clinic.html; http://www.dailymail.co.uk/news/art...lletier-kidnapped-doctors-use-guinea-pig.html). It would be interesting to see the records kept of the interactions between the teacher assigned to tutor adolescents, and Justina. How much time did they spend together? How were assignments chosen? What resources was Justina allowed to use? What was the training of the teacher? What was his/her area of specialization? How much time was spent setting academic goals and discussing future training plans?

This last item is, IMO, very important. According to the Mass. Foster Child Bill of RIghts: Every foster child "shall receive assistance in acquiring life skills, education, training and career guidance to accomplish personal goals and prepare for the future and be informed of the post-secondary educational and employment supports available to youth in care through the Department." (http://www.mass.gov/eohhs/docs/dcf/foster-child-rights.pdf). During her time locked in to Bader 5, Justina was under the guardianship of DCF and deserved at minimum the quality of care outlined in the FCBoR. She was a defacto foster child of DCF, and DCF should have ensured that the Bader 5 team was respectful of Justina's educational needs.)

One stated aim of the Bader 5 team teachers is that they intend to work with a child's school to devise a plan in which certain assignments can be completed during the child's hospital stay so the child will not lose touch with the work being covered in class. This might have proven difficult to accomplish in Justina's case since she was enrolled in a private school under an Individualized Education Plan necessitated by a learning disability. Difficult to accomplish, perhaps, but surely not impossible. The psychologist who made the diagnosis and precipitated this case should have understood the importance of her education to Justina's future. After all. even DCF couldn't legally hold her after she turned 18 and Justina wouldn't be under their control forever. She would have to go into the community and support herself. The Bader 5 team assigned to Justina should, therefore, have ensured that she would not have to make up for years of educational neglect.

According to one of the family's lawyers, M. Stavers, Justina is now three trimesters behind her former classmates and has been given no real education since BCH made their decision to keep her in the extreme academic isolation of Bader 5. (http://abcnews.go.com/Health/sick-connecticut-teen-justina-pelletier-foster-care/story?id=22668251) FWIW, Justina's older sister Jennifer has her own theory about the lack of schooling received during her time in Bader 5. ''...They say adolescents suffering from Somatoform are depressed, listless and uninterested in school or activities.*She used to love school, she spent hours at the ice skating rink with her friends and hiking with her dog.
'She is certainly listless and depressed now – it is like they have created those symptoms to suit their own ends…" '* (http://www.dailymail.co.uk/news/art...lletier-kidnapped-doctors-use-guinea-pig.html).

I hope that Justina will be able to regain her academic focus and confidence, and that she will receive consistent support as she begins the hard process of playing catch up. With any luck, that schooling will be well out of the control of the Bader 5 team.
 
  • #552
She's not in Bader 5 any longer, is she? She's at a place in Framingham which provides educational and social services for at-risk adolescents.
 
  • #553
She's not in Bader 5 any longer, is she? She's at a place in Framingham which provides educational and social services for at-risk adolescents.

What is she at risk of? She is physically sick child.
She was born premature, she had a stroke at age 4. She has been diagnosed with mitochondrial disease.
How does she belong to this facility?
This whole situation is absurd.
 
  • #554
I've never heard of a toddler having a stroke. Wonder if that is supposedly caused by mito. disease?
 
  • #555
I've never heard of a toddler having a stroke. Wonder if that is supposedly caused by mito. disease?

Anybody can have a stroke.

"It’s a myth that only older adults have strokes. While people over 65 are at higher risk of stroke, a person of any age can have a stroke, including teenagers, children, newborns and unborn babies. Although estimates vary, stroke affects about 6 in 100,000 children. Stroke is a leading cause of death in children in the U.S."
http://www.stroke.org/site/PageServer?pagename=PEDSTROKE

However in her case it could have been an initial manifestation of her mitochondrial disorder.

"Conclusions— These results suggest that ischemic stroke may be the only manifestation or the initial manifestation of a mitochondrial disorder."
http://stroke.ahajournals.org/content/32/11/2507.long
 
  • #556
According to this http://abcnews.go.com/Health/advoca...ier-held-state-pysch/story?id=22312907&page=3
the stroke was diagnosed when she was seven.

Pelletier said that when Justina was about 7, an MRI verified she had a large stroke on the left side of her brain, which affected her short-term memory. He said that withholding drugs that stabilize her heart rate could compromise her health.

By the way, I was under the impression from this thread that the hospital discontinued her vitamins and her pain medication but according to the article above the plan was to continue giving her those.

The plan stated that her "medication regimen will be simplified with a gradual reduction of medications to a small set of essential, non-detrimental, modestly dosed medication with limited side effects." The plan cited drugs that would continue "for now": Lyrica, which is indicated for fibromyalgia and nerve pain; and a "vitamin cocktail." But other drugs would be discontinued: Tegretol, for brain disorders and epilepsy; Milodrin, for low blood pressure; and Metoprolol, a beta blocker.

One of the effects of Metoprolol is to lower blood pressure so if she also needed a drug to treat low blood pressure it seems like stopping them both might make sense. Epilepsy medications are also frequently discontinued without ill effects if the patient does not have seizures.
 
  • #557
Anybody can have a stroke.
However in her case it could have been an initial manifestation of her mitochondrial disorder.

"Conclusions— These results suggest that ischemic stroke may be the only manifestation or the initial manifestation of a mitochondrial disorder."
http://stroke.ahajournals.org/content/32/11/2507.long

rsbm: My 22yr old has mito. He had a stroke @ 22 months.
 
  • #558
  • #559
  • #560
Just in case it hasn't already been posted, this is the BCH Clinical Investigation Policy and Procedure Manual section dealing with wards of the state.

http://www.childrenshospital.org/~/...pecial_Procedures_for_Wards_of_the_State.ashx

Therefore, BCH wouldn't need parental permission to put her on any research protocols. Her father appears to think they already used her as a research subject. DCF looks as if it doesn't want videos or photos of Justina taken. I am not aware of their policy, but is that standard for DCF to prohibit parents from taking photos or videos of their child? Parents are only allowed to see her for 1 hour per week under heavy supervision.
 
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