One of the greatest unspoken fears that any parent of a special needs child lives with is that the State decides that they know better how to care for your child then you do. That when you disagree with doctors or hospitals, they in turn will call in the child welfare authorities and rip your child out of your arms. This scenario is playing itself out in Massachusetts with the Pelletier family.
Their 15 year old daughter, Justina, like her older adult siblings, has been diagnosed with mitochondrial disease. She, like her siblings, was being treated for that rare illness. Her disease was diagnosed by Tufts Medical Center doctors. One of the top hospitals in the nation. On a trip to Massachusetts, from their home in Connecticut, she became sick and was taken to Children's Hospital in Boston. Where upon a neurologist decided that her diagnosis was all in her head and refused to treat her for mitochondrial disease. The parents hearing this insisted on a second opinion, whereby the doctor and hospital called in child welfare services when the parents went to take their then 14 year old home. The hospital immediately went to court and had the girl committed to their lockdown mental institution where she has been for over a year.
Her parents were only allowed minimal contact, once a week visits, and two monitored phone calls. In fact the Girl had to devise a way to tell her parents what was going on in the institution in secret, because when she told them about events with nurses listening, she said she would be punished by staff after her parents left. The father has been on television, radio and in the newspaper trying to garner support for their position. The hospital actually went to court and demanded a gag order on the proceedings, which the father violated. He said, its his daughter and he will talk about her case if he wants, despite any court sanction. Apparently in this brave new world, if the state can take away your child, they can deny your freedom of speech to talk about your child and your legal proceedings as well. Of course the Massachusetts judge who ordered the gag has brought criminal charges against the father.
Meanwhile, for the past year Justina has received no medical treatment for her mitochondrial disease. Instead she is being treated with psychiatric medication and behavioral intervention therapy. She is without a doubt medically fragile according to her parents and their advocates.
Yesterday in a court proceeding, where the parents thought they were going to get their daughter back, the judge instead deemed them unfit parents and moved their daughter permanently into foster care. She is to be moved from the mental institution within 48 hours to an unknown foster care location on Boston's North Shore. So this Massachusetts judge has ordered the severing of ties between this Connecticut citizen (someone with no ties whatsoever to the state other than she was on a vacation trip at the time of her illness) and her parents. Her mother had to be hospitalized after the proceedings.
Meanwhile, I wonder what the State of Connecticut is doing to protect the rights of its citizens in this case? Anybody? Anybody? Has someone ever spoken to the Connecticut Attorney General about this situation? Afterall, this family sought treatment for this child at home and obviously sent her to school in Connecticut. What does the school district have to say about what happened? I am hard pressed to believe that Justina did not receive some kind of accommodation for her education considering the nature of her disease. Are those persons in Connecticut that are attached to this girl, either as educators or doctors, now accepting the fact that according to Massachusetts they are accessories to child endangerment and abuse? Are they accepting the fact that they are now liable under law and can possibly be brought up on criminal charges, never mind losing their professional licenses?
This is not China, the Soviet Union or a totalitarian nation. This case is happening right here in the United States in the State of Massachusetts. A state that has one of the most liberal-progressive governments in the country. A state that is held up as a symbol of proper government and true humanitarian reality. But for the Pelletiers nothing could be farther from the truth. The Pelletiers are living through a true dystopian nightmare with the health of their daughter caught between the egos of doctors, hospitals and self-righteous judges.
Here is an article from Boston.
When MrGS was very little, we had had a huge disagreement with his diagnosing psychiatrist about a medication. He had prescribed risperdal for him. After two days of taking the drug Mr. GS, as a 9 year old, said he felt like he was going crazy. We immediately threw the medicine in the garbage. At the time one rare side effect of this drug was psychosis, which it actually seemed had effected MrGS. (Recent lawsuits have proven that there are other harmful side effects to this medication that can occur.) The doctor was rather incensed that we stopped the risperdal without his permission. (He would have insisted we keep him on the med to see if the side-effect passed.) In fact, he kept trying to get me to put Mr.GS back on that medication. I flatly refused. Then after some other unpleasant incidents, where I called him on not following through on promised supports and therapies for MrGS, this psychiatrist told me to go to another doctor, which I gladly did. But what would have happened if he had called the child welfare authorities because of our disagreement, saying I was abusing my child because I wouldn't listen to his diagnosis, follow his medical advice and wanted to talk to another doctor? What would have happened if someone in his office had done the same? At the time it had never occurred to us that anyone would threaten our parental rights in any way when it came to medical decisions for our children. It truly seems that times have changed.
Over the past two decades I have gone up against educators, doctors and therapists when it came to both of the boys. We had been told more times than not that the boys cannot do something because of their autism. I have had social workers, psychologists and educators tell me that my sons were inadequate, incompetent or emotionally unfit for certain realities like partaking in the school play....you know since those with autism can't act; or they shouldn't go to law school because its to social; or that MrGS should be an archivist since he liked history, it had minimal contact with other people, and that his anxiety was too debilitating for law. They seemed to have no out-of-the box-idea and only pushed computer science, since they all thought that this field was the only place for the aspergean mind and was best because it has minimal social interactions. (FYI, Mr GS decided to study computer science because coding makes him feel like a wizard. Meanwhile we have subsequently learned that it is also a majorly group work, aka social, oriented profession.)
We had been told to push them in one direction educationally simply because they had autism or even due to their generalized anxiety disorder, instead of where they wanted to go. These "professionals" decided to judge the children by their disability and not by who they actually are. You can bet if we didn't agree with a recommendation it didn't get done. We, as their parents, had the final say on what was best for our child. Or at least I thought we did. Luckily, they are both adults now and there is no fear of some stranger making life altering decision for them or us. They, with our guidance (luckily), make their own daily decisions concerning their health and their future. They decide what they want to study, what goals they want to accomplish in life, what they believe (religiously, morally, ethically and politically) and what direction they want for their life.
Now unfortunately there are also stories that circulate every year about school districts that
also threaten parents with child welfare services if they bring lawsuits
or refuse what the educators have decided is best for the child. It is beyond appalling to threaten a parent for demanding their child's civil rights be respected and in many ways such threats could be seen as criminal (conspiracy to deny someone their civil rights). These scenarios are terrifying. Not the least because we have challenged our district on a number of occasions due to the incompetence of several educators. (Yes even in my district, which is a terrific place to educate your child, there are always bad apples.) And we know the uphill battle it is in the first place to fight this fight. I couldn't imagine how hard it would be to have this despicable threat hanging over your head as well.
One memorable experience (I could give you chapter and verse about each and every event), was when CM2 was in second grade and we had to actually threaten a lawsuit against the district. Apparently lo and behold the new special education teacher they hired that year had "cured" CM2 of his disability. He decided, along with the new Vice Principal of the elementary school (who had hired him of course), that my 7 year old autistic child didn't need any more special education services and should just be monitored for issues. No special education, no para and no collaborative program. They were going to put him in a regular classroom without any kind of assistance whatsoever. In fact they had decided that since the IEP at the time didn't mention specifically that CM2 had aspergers, even though all the testing did indicate autistic-like issues, and I had told them that he had been diagnosed with the disability, that he didn't have it and they didn't have to act upon it. The district director was none too pleased with that revelation when I told her about it.
The reality was, in fact, that CM2 had gone backwards in his functionality since this idiot of a teacher had taken over his program. CM2 had lost social skills, had no ability to understand simple
instructions without support, had terrible comprehension issues, was
decidedly less independent, and had an anxiety level that was off the
charts. His inability to function was so bad in truth that the regular education teacher was the one who had given me the heads up as to what the special ed teacher and vice principal were trying to do so I could stop them.
This self-important jackass of a teacher had decided he knew better than everyone else who had ever worked with my son, including the highly regarded autism specialist from first grade who had created CM2's behavior and education program in the first place. He dumbdowned CM2's program and goals (that is why I am always adamant that goal setting should be a challenge for the child and not something easily mastered), against my wishes and in violation of the IEP. He had decided that since my son could do his rote math facts and spell at an incredible level that he had no reason to be designated. Now if we lived somewhere other than our little hamlet, it is quite possible that instead of listening to me about what was the truth of the situation, the district director could have simply backed up their teacher and vice principal (as many do right or wrong) and called child welfare on us, or at the very least threatened to have the boys taken away if we didn't follow their "sacrosanct" ideas.
Instead this was the general reality in our district: "Fighting the Good Fight Part II- Starfleet We Have Engaged the Borg"
Honestly, I don't know what is going to happen in the case of the Pelletiers. I pray that there is justice in this case and that Justina gets to go home and receive the real medical care that she needs. I find it, as many do, simply incredulous that one doctor and one judge can take your child away simply because they have a disagreement with other medical professionals and that you, as the parent, don't get to choose, with which perspective you happen to agree.
Many question if there are ulterior motivating factors in this case. But I truly can't speculate. The reality is that Justine comes from a loving family that was trying to do the best for her, as they had done for her siblings, who by the way are thriving. With all the children that are in fear for their lives and in danger of true unmitigated abuse, it really seems a waste of Massachusetts' time, energy and above all the State's limited resources to destroy this family. Something does seem very rotten in Massachusetts.
Ask Marion regularly updates Justina's health. Justina is in extremely poor health, the port in her colon is infected and she is suffering from sepsis, which apparently the DCF was not treating until her mother demanded intervention.
NOTE: I just read about this case in Alaska, where a 27 year old man was taken from the care of his parents and put into state custody. The article does not say if the man in question was a person with a special need or a typical adult who simply had some very bad reactions to medication and was unable to make medical decisions for himself at the time. However, this goes back to one basic CAVEAT I always tell parents when their child reaches 18-years-old. Even if your child is not going to go into a custodianship you need to have them sign a healthcare proxy designating YOU as the person to make medical decisions for them if they cannot. In this Alaska case when the parents went to court to seek healthcare rights for their 27 year old son the hospital intervened and the court sided with the doctors claiming the parents were a threat to their adult child. I have always told people that simply because they are the parents does not mean the doctors nor the courts will side with them when your child reaches their majority. Like in the Justina Pelletier case, the issues began when the parents questioned the treating physicians and wanted a second opinion. Something, by the way, which is your right under law and something your insurance companies always tell you do to in the first place.
UPDATE 2/26/14: From The Blaze
Justina will not be transferred from her facility in Framingham to a foster care facility in the North Shore. The facility refused to take her citing the publicity surrounding the case. Additionally, Republican law makers in Massachusetts are circulating a resolution that would have DCF return Justina to her parents.
State Reps. Marc Lombard and Jim Lyons, both Republicans, announced on
Wednesday that 12 representatives have already signed on to support the
“The self-stated goal￼ of the Department of Children and Families is
to strengthen the link between families. Removing a child from her
family is reserved for only the most egregious circumstances where
evidence of malicious intent, negligence or the blatant inability to
care for the child is present. No such findings are present in this
case,” Lombardo said in a press release.
Lyons argued the Pelletier case is a “dispute between conflicting
medical opinions” and treatment decisions should be left to parents, not
My question: Why aren't Democratic law makers incensed about this case and why aren't they signing onto this resolution? Do Democrats really think that parents are unable to make medical decisions for their children or that children belong to the State and not their families, as some leftist pundits have said? Could it be that they are really more interested in supporting the Democratic controlled government administration (Deval Patrick), which appoints the head of and administers DCF, than "Justice for Justina" and protecting the rights of families? Afterall it is an election year and it is Party uber alles isn't it? Apparently there has been a resignation demand by the GOP put forth against the head of DCF. But this does not come because of Justina. The DCF is embroiled in another controversy where they actually lost an endangered 5-year-old who is now presumed dead.
And yes before you say anything, the Republican resolution may be part of the present election cycle as well, but at least it would actually help Justina and her family instead of perpetuating the cycle of incompetence that surrounds DCF. So while the GOP too may have ulterior motives, in the end, if they can force the issue with DCF, the immediate outcome will be good for the Pelletiers and also reestablish some semblance of parental medical decision-making rights in Massachusetts. Which will be good for individual liberty as a whole.