A Less-Than-Sweet 16: The Justina Pelletier Saga Continues

Justina Pelletier turned 16 over Memorial Day weekend.  She was only 14 when the Massachusetts Department of Children and Families (MA DCF) took custody of her.  She has been hospitalized or institutionalized ever since.  Many of you will be aware that this is a story I have been following closely. If you are new to this tale and need further background on this family please see When Being Wrong is Unacceptable and When Doctors Disagree.

Earlier this month Justina Pelletier was transferred to a facility in Connecticut.  Though her parents still feel she should be home, they have said that this new facility seems to be taking better care of their daughter.  They are allowed more frequent visitation with her and are hopeful that she will soon be home.  Some friends were even allowed to visit and celebrate with her on her birthday. 

Even though these are positive developments, the case as a whole is still very concerning.

In March of this year "permanent" custody of Justina Pelletier was awarded to the state of Massachusetts.  Prior to this, Justina’s care was ordered back to her original physicians at Tufts.  Since this case is a diagnostic dispute between the physicians at Boston Children's Hospital (BCH) and Tufts, wouldn’t this transfer signify that the Tufts diagnosis of Mitochondrial Disorder was being upheld?  And, since the parents had been upheld on which doctors should treat their daughter, why did custody go to the state?  The logic in these decisions is not clear to me.

 Shortly after the custody ruling in March the judge's decision was leaked, trying to gain some additional perspective on the case I of course read it.  The full text can be found here.  My interpretation is as follows:

He made three main points:

1.       Disappointment that Connecticut Department of Children and Families (CT DCF) was unwilling to accept a transfer.

2.       Justina’s diagnosis

3.       Parental bad behavior

Let’s break down what Judge Johnston had to say about each of these issues.

First, the better part of his decision talked about his disappointment in CT DCF for refusing to accept a transfer of Justina.  He noted in his decision that CT DCF had investigated the Pelletiers and found that the home was an unsuitable environment for Justina (the Pelletier family claims the opposite).  Personally, I found the incessant mention of the CT DCF denial by Johnston to be (for lack of a better word) whiny to the point of ridiculousness and redundancy.  To be frank, I expect legal documents to be more professional and less petulant. 

However, all that being said, I don’t understand why Connecticut is refusing the transfer.  I assume it is to avoid media attention and responsibility.  If they were to accept her, she would be closer to home and if (as the Pelletier family states) CT DCF in fact found no problem with the home, why not accept the transfer and release her to the custody of her parents?

Regarding the diagnosis, Judge Johnston states that there is a large amount of psychological and medical evidence to prove that Justina suffers from Somatoform disorder.  However, as mentioned above, his order to transfer her care back to her original physicians at Tufts is contradictory to this statement.  The Tufts physicians diagnosed Justina with Mitochondrial Disorder and will certainly treat her in accordance with their diagnosis.

The last belabored point in the decision, was a discussion of the parents’ poor behavior.  Interestingly, everything noted as poor behavior and the reasoning for removal of custody happened after Justina was initially placed in state custody.  The document states that the Pelletiers were:

-          Verbally abusive to BCH staff

-          Approaching other families at BCH and telling them that the hospital was kidnapping children

-          Threatening institutions that were planning to accept Justina as a patient

-          Contacting the media

-          Changing their minds about accepting a transfer to CT DCF upon the advice of new legal counsel.

To me, much of this seems like behavior that is par for the course when someone has been unnecessarily stripped of their parental rights and are grasping at straws to have their child returned.  I don’t deny that the behavior is rude, but being rude is not a reason to lose your parental rights.

Consider these parents: their daughter has been taken by the state of Massachusetts, they are extraordinarily limited in when they visit her and what can be discussed, they see her health declining and can do absolutely nothing to help her.  How calm and pleasant would you be if it were your child?  

When Being Wrong is Unacceptable: More on the Department of Children and Families and Justina Pelletier

Alright, as many of you certainly know I have developed an addiction to the Justina Pelletier case.  I promise someday I will write on another topic, but today is not that day.  If you haven’t been privy to my latest obsession please see: When Doctor’s Disagree.

An opinion I hear for too often is that this is a “conservative” story, driven by “conservative” groups and media.  I don’t understand this claim, how is a story about parental rights only a conservative issue?  What if Boston Children’s Hospital (BCH) did overreach on this family, the Massachusetts Department of Children and Families (MA DCF) rubber stamped this case, and the court showed bias toward MA DCF in their decision, wouldn’t that be important to parents of all political beliefs? 

As I have said in every article about Justina, we need to remember that we are only seeing half of the story.  Because of this we do need to be a bit skeptical and cautious in forming an opinion.  Though, it seems that there is enough of a question to keep watching this story.  The best thing to do is investigate with an open mind and a calm nature.

There are two main opinions on DCF swirling around this case.  The first comes from those who side with BCH and believe that the hospital and MA DCF are justified and must certainly have evidence against the family that they are unable to share due to privacy laws.  This opinion is represented well here.  The article reminds us to not lose all faith in the medical community because of this story and that the vast majority of providers are appropriate at BCH, even if this story is true.   Pediatric providers have a deep love for their profession and a passion to help the children in their care.  Cases like Justina’s can make us lose sight of this and develop an irrational fear of pediatric medical professionals.   We must not allow our concern in this case to shape our judgment of all pediatric clinicians.

The second opinion is one that is very critical of child protection departments throughout the country.  An article explaining this case and the inadequacies of child protection services in general can be found here.  The author explains how child protective services employees often develop the idea that most parents will abuse their children and even a whisper of possible abuse should be acted on with the removal of the child. 

At this point I want to clarify a part of my opinion that I realize may not yet be clear.  Though I feel that there may have been overreach by the state of Massachusetts in Justina’s case, I do not believe the goal of MA DCF, BCH, or their employees has been to harm this girl.  I believe every person in this case is working for what he/she feels is in Justina Pelletier’s best interest. 

I work in pediatrics currently and frequently disagree with choices parents make for their children, but my respect for the institution of parenthood reminds me that people are entitled to make choices for their children that I consider wrong.  It is only in the direst of circumstances that anyone is entitled to intervene.  It is not always easy, but I remember that my view is merely a snapshot and that parents have the right to raise their children as they see fit.  Even if their home isn’t perfect (keep in mind that no home is), we must consider the harm done by removal versus the harm (or potential harm) done in the home.

Unfortunately, it doesn’t appear that this evaluation is always done appropriately.  The reality is that there is always harm done to a child when removed from their parent’s custody.  Sometimes, it is warranted, but should be a last resort because of the psychological turmoil removal has on the child.  When removing parental custody, it is absolutely and ALWAYS unacceptable for DCF to be wrong! 

Anyone who works for child protective services should work under a constant fear of being wrong, as deeply as or even more deeply than the medical community fears mistakes.  The responsibility given to those who work for DCF is intense and workers should feel the weight of that responsibility.  It is unacceptable for these agencies to become reactionary, ie remove a child too quickly and find proof for the removal later.  I am not saying that this happened here, though we must admit it as a possibility.  I am trying to make the broader point that DCF should be under the strictest regulation, and that the burden of proof should be on their side for removal of a child.  The bar should be set high, weighted always on leaving the child with their natural family unless serious and imminent harm is certain.

Since we have said that a harm comparison should be done, let’s use the information we have in the Justina Pelletier case to compare her life with Mom and Dad vs. her life in DCF care:

Life with Mom and Dad

-          Participated in social activities (figure skating)

-          Attended and enjoyed school

-          Frequent medical appointments (possibly unnecessary)

-          Frequent medical procedures (possibly unnecessary)

-          Many medications (possibly unnecessary)

-          Family structure intact

Life in MA DCF Care

-          Over a year in institutions

-          No schooling (alleged by the family)

-          Deterioration of overall health and physical appearance (assessed by pictures and family report)

-          Less medical procedures (that were possibly unnecessary)

-          Fewer medications (that were possibly unnecessary)

-          Family unit and child’s normal support system fractured

It has also been alleged that Justina has not been allowed to participate in elements of her faith that are important to her.  If the parents are medically abusing their daughter this certainly needs to be dealt with, but to add intellectual, emotional, physical, and psychological harm to this child under DCF care is not the way to handle it. 

Remember that there are respected physicians who have cared for this child for years and feel she has Mitochondrial Disease and that the family has appropriately dealt with this diagnosis.  This case is not cut and dry, one respected physician’s opinion is in direct opposition to another and a child’s care and wellbeing hangs in the balance. 

I have said it before and will say it again: It is unacceptable to be wrong.  In any DCF case there should be a harm analysis and abuse, willingly or unwillingly inflicted by the government agency on the child needs to be addressed and appropriately handled.  It does no good to move a child from a potentially harmful environment into a definitely harmful one.

Updates: Romeike and Pelletier Families

As my avid readers will know, I have been following the legal battles of two families very closely over the past year.  Both families have had an exciting week.

The Romeike Family

The Romeikes are from Germany, they petitioned the United States for asylum so they could have the freedom to homeschool their children.  Homeschooling is illegal in Germany due to a law put in place by Hitler in the 1900s.  For the background on this family please see my article: Why Should We Care About the Romeike Family?

Early this week the Romeikes’ legal petition for asylum received a death blow.  Their petition had been denied by a lower court and they were waiting to hear if the United States Supreme Court would hear the case.  The US Supreme Court denied this request early this week feeling it was not important enough to be heard by them.  The next day, the Department of Homeland Security contacted the legal team for the Romeike family and informed them that they could stay in country indefinitely even though the court had ruled against them.

I am thrilled for this family and so grateful that they can stay in the United States and school their children in accordance with their beliefs.  However, I do not believe we have seen the last of these stories.  There is a reason the government pursued this case to the extreme that it did.  In my opinion, they were looking for a precedent to be set that homeschooling is not a basic human right. 

I am beyond disappointed that the US Supreme Court decided this case was not important enough to review.  I believe passionately that homeschooling is a right and that the Court should have been willing to hear this case and rule that the determination of what is proper education for the children is an undeniable right of their parents.

Interestingly, the US Supreme Court decided this week that it would hear the case of a convicted murderer, who is petitioning the court for the right to keep his beard, which would disobey the rule of the prison.  He states that the prison rule violates his religious freedoms as a Muslim.  I am not trying to say that this case isn’t worthy of the notice of the US Supreme Court, but I don’t understand how Christians petitioning asylum to homeschool their children, stating religious persecution from their home country is somehow less worthy of the Court’s attention.

I fully expect to see more persecution of US homeschooling families in the future; the current administration appears to be hostile to the rights of homeschoolers.  Constant vigilance has been the key to survival for the homeschooling community since I became an active part of it in the 1990s.  I will remain vigilant and I encourage everyone else to do the same.  The evidence is on the side of homeschoolers, who regularly outstrip public school students in education level and (though it is hotly debated) social skills.

The Pelletier Family

The Pelletier family has been fighting for the return of their daughter Justina, who is currently in the custody of the Massachusetts Department of Children and Families.  For back ground info on this case please read: Hospital vs. Parent, The Pelletier Family v. Boston Children’s Hospital, and Pelletier Opinion Pieces: Best and Worst.

After the recent public outcry the judge (same judge as before) has decided to allow Justina to return to her original medical team at Tufts.  Also, the Department of Children and Families has dropped the contempt of court charges on Lou Pelletier for breaking the gag order.  This is a positive step, but this battle will not be over until Justina is returned to the custody of her parents.  Massachusetts Department of Children and Families is also trying to transfer her to the custody of the Connecticut Department of Children and Families, at this point Connecticut is refusing to accept this transfer.  There are also at least a dozen Connecticut legislators that have become involved in this case on the side of the Pelletier family.

The decisions in this case disturb me as well.  Don’t get me wrong, I am thrilled that she is being transferred back to her original doctors at Tufts.  However, If the judge was so convinced that the Pelletiers, as well as the team at Tufts, were abusing this girl, why did his opinion change so quickly once the public became aware and involved in the case? 

He was sure enough to retain state custody of Justina for 13 months and the only recent change has been the public’s involvement and interest in the case.  Call me old fashioned, but I don’t think the 6^th amendment involves the judge changing his mind based on public outcry.  If the transfer to Tufts is in the child’s best interest (what the judge is supposed to be deciding) why did it take 13 months and massive public pressure for the decision to be made.

I was glad to hear that some media outlets still plan to follow this story closely and investigate the Massachusetts Department of Children and Families and Boston Children’s Hospital for ulterior motives, and wrong doing in this case.  I will continue to follow this story as well.

The Pelletier Family v. Boston Children’s Hospital: The Battle Continues

Last month I wrote an article about Justina Pelletier.  Justina is a 15 year old girl diagnosed with Mitochondrial Disease at Tuft’s hospital, if you are unfamiliar with her story to this point please read last month’s article, Hospital vs. Parent.

Over the past week this story has exploded.  Lou Pelletier, Justina’s father, broke the gag order placed by the court and has been speaking to the media.  Last week marked the one year point in the Pelletier Family’s battle with the Massachusetts Department of Children and Families, DCF, and Boston Children’s Hospital, BCH.

I have watched Mr. Pelletier in the two major interviews he did this past week: The Glenn Beck Program and  The Kelly Files,

In my opinion, Mr. Pelletier is amazingly calm and collected for a father in his position.  In each interview he tells his side of the story, a few of the points he makes are below:

-          He is breaking his silence (and defying the gag order) because he believes that Justina’s life is in danger because of the treatment she has received at Boston Children’s Hospital

-          In January of 2013 Justina was ice skating and living the life of a normal teen, now she is confined to a wheelchair and states that she is in constant pain.

-          The specialist the family went to BCH to see was physically removed from her room when he attempted to see the patient.

-          All medical procedures performed on Justina by Tufts Hospital were deemed necessary by physicians and were covered by insurance.  He also gives examples of the procedures and presents proof of why they were medically relevant.

-          The Pelletier Family feels that the treatment Justina received at BCH is mentally and physically abusive to their daughter.  Examples are:

o   Psychologists asking her why she allowed doctors to perform past medical procedures on her when they were unnecessary.

o   Justina has difficulty with bowel movements, some of her previous medical treatments were to resolve this problem.  According to Mr. Pelletier, Justina has been forced to sit on the toilet for hours at a time and has been told that her toileting issues are in her head and that she will sit on the toilet until she has a bowel movement.

-          Justina has been moved to another facility in Massachusetts that specializes in psychological issues and will not accept patients with medical conditions.  Mr. Pelletier states that the first time he saw Justina at the new facility she was brought outside in 18 degree weather with a wet head, each subsequent time she has had dirty, greasy, matted hair.  He does not believe his daughter is getting care she needs or the treatment she deserves at this facility.

As emotional a reaction as this information immediately stirs in us, we must keep in mind that all stories have two sides.  The frustrating thing about this tale is that the other side, BCH and DCF, are unable/unwilling to give any pertinent information.  The statement released by Boston Children’s Hospital is as follows:

“We are proud of their work and positive impact on the patient.  [O]ur clinicians are particularly distressed that the inaccuracies surrounding this case have caused undo concern for the many children and their families with mitochondrial disorders in our care. Misleading reports suggesting that the hospital holds patients in its inpatient psychiatric unit do not recognize the role of DCF as the legal guardian or the challenges inherent in finding appropriate lower acuity facilities for certain patients.” (source)

As expected and appropriately for the hospital, BCH is defending its physicians and shifting responsibility to Massachusetts DCF.

The interviews with Mr. Pelletier have been decent, but I feel the reporting has missed some major questions:

-          What is standard protocol for cases of alleged medical child abuse?  Are gag orders typically placed by the court in these cases?

-          What about the other families who have recently spoken up about similar experiences with BCH?  What are their stories?  Does BCH have a higher than normal number of cases reported to DCF than other pediatric hospitals?

-          It has been reported that BCH is the “go to” hospital for Massachusetts DCF when they have medical cases.  Is there a third party to review cases that involve BCH physicians?  What is the hospital that is called?  Did they review Justina’s case?  Has everyone involved been vetted for relevant conflicts of interest?

-          Why have the opinions of Justina’s physicians from Tufts not been treated with the same deference as the opinions of the BCH physicians?

Because the information is so limited in this case, I certainly don’t profess to have the right answer.  However, one glaring question cannot be ignored:

If BCH is correct in their new diagnosis, and their new treatment path is working, why, after a year on this new plan, have we seen Justina’s condition decline instead of improve?

Something feels wrong here, and for the safety of this little girl I think we need to figure out what that is and make it right.

It’s not you, it’s me…

I am disgusted with the growth of government bureaucracies and the lackadaisical view of so many Americans toward helping our neighbors.  This isn’t a recent development, but has been a slow creep over many, many years. 

The government is not the only body that can help, nor are they particularly good at it.  When American’s put their time, talent, and treasure into a project we change the world.  We need to return to the things that made us the greatest country on earth: our heart, our compassion, our love.  We are shirking our duties as citizens of this great and free nation and need to be more active in showing love to those in need.  If we give a “hand-up” the government won’t need to give a “hand-out.”  I think it’s time we broke up with Uncle Sam, so I wrote him a “Dear John” letter…

Uncle Sam,

             It’s not you who should feed the hungry…it’s me.

       It’s not you who should comfort the widowed and orphaned…it’s me.

     It’s not you who should care for the sick…it’s me.

I have allowed you through the years to steal bits of my humanity and even more of the humanity of my brothers and sisters who needed me.  I let you convince me that I didn’t have the power to change things or help people and that the little mark I could make on the world would be insignificant and unnecessary.  This abusive relationship has gone on long enough and I think it’s time we break up. 

I WILL see the homeless man on the corner for what he is…a man; no longer will he be an insignificant being behind a sign asking for food. 

I WILL note the true self of the single mother at the grocery store; she is a woman who made the hard choice in a society of “quick fixes.”

No longer will I walk by, turning the broken, desperate, lonely, poor, hungry, or weary members of my community into numbers or dollar signs taken from my paycheck each week.  These are not your “problem”; they are human persons that I am to love, help, care for, and lift up.  I can and will…

•           Stock the shelves at the local food bank
•           Give diapers, bottles, clothes, food, etc. to single mothers struggling to find a way to keep and care for their child
•          Show love and compassion to the desperate and lonely, seeing their humanity and recognizing their worth as individuals
•           Seek out the unemployed and find uses for their unique talents and skills

You see Uncle Sam, I don’t need you…we don’t need you!  American’s are resilient, kind, generous, and compassionate, we can do all of these things and more, far, far better than you could ever hope to accomplish through your bureaucracy and red tape.  Love is verb and we will live with LOVE.

Live

Our

Values

Energetically

Why Should We Care About the Romeike Family?

So, this first topic is less bio and more broadly ethical than I typically plan to cover on this site.  I hope you will indulge me however, as the topic is near and dear to my heart: homeschooling.  Being a former homeschooler in my family we say, “we were homeschoolers when home schooling wasn’t cool.”  These were the days of keeping organized boxes with every math test, paper, spelling quiz, drawing, and worksheet you had ever completed along with an action plan for if the fine gents in blue came knocking on our door.  During this era we were very familiar with Home School Legal Defense (HSLDA) and paid close attention to each case that came through.  So, when I recently heard about the Romeike family the old antenna went up.

The Romeike’s are a German family, in 2006 they decided to pull their children from the public schools for religious reasons (they are Evangelical Christians).  Homeschooling is illegal in Germany, the law banning it first being strongly enforced by Hitler and the Nazi Party.  The stated reasoning for this law is a fear of “Parallel Societies.”  Defined as: “A community in which members of different backgrounds lack a shared sense of group identity and thus live separately, side by side.” Found on - http://civicdilemmas.facinghistory.org/content/glossary  This to me sounds much like the copout used here of, “your children will not be properly ‘socialized.’”  In 2008, the Romeike family sought asylum in the US to be free to homeschool their children.  When homeschooling in Germany they had been: fined, their children forcibly taken to the public schools, and the parents threatened with jail time and loss of custody of their 6 children.  In 2010, they were granted asylum…so, we are done right, and they lived happily ever after?  Not quite.

The case has now been taken up by the US federal government in Romeike v. Holder and the government is arguing for deportation of Mr. and Mrs. Romeike and their children.  The stance of the government is that homeschooling is not a basic human right and that if Germany outlaws homeschooling for everyone then it is in essence “fair.” Therefore, in the opinion of the US government this family is not being persecuted.  I find this defense worrisome. 

The government is saying that it is not a violation of religious freedom or human rights to forcibly remove a child from his/her parents and force him/her into public schools for 22-26hrs per week.  The argument made was that the parents would be free to “teach” them during the remainder of the time.  If this argument is being made by our government about Germany’s restrictive education laws how long will they willingly let homeschooling stand here in the US?  Will we soon be back to boxes and action plans?

I do not know this family personally, but believe very strongly that denying them the right to homeschool is a violation of their religious freedom as well as their human rights.  Who has a more vested interest in a child’s success and proper upbringing: the parents, the government, or the teacher?  Certainly, the parents, biologically and emotionally a parent desires to see their child succeed.

My hope for this family is that Home School Legal Defense will win the case and they will be granted asylum, setting a precedent for other families under similar persecution around the world.  It seems to me an open and shut case, the family feels the education their children would receive in the public school is a violation of their religious beliefs, and therefore they cannot send their children to school.  If sent back to Germany the parents would be taken to jail and the children turned over to the state.  What is our asylum law worth if it doesn’t prevent loving families from being separated for expressing an act of conscience? 

The US federal government has taken a scary stand on this issue and I believe we are not only fighting for the Romeike family but setting an important precedent for US homeschoolers as well.  My family was very blessed to see homeschooling blossom during the decade we were part of the active community and I will continue to sound the alarm for those who come after us as the right to homeschool has made me the woman I am today.  I am eternally grateful for this right (as well as the fact that my parents took advantage of it) and I will continue to fight to keep it.

If you would like to read more about the Romeike family here are the articles I used for the information in this post:

http://www.theglobaldispatch.com/romeike-family-homeschoolers-escaped-from-germany-told-by-doj-homeschool-is-not-a-protected-freedom-94978/

http://www.aljazeera.com/indepth/features/2013/03/20133772515825350.html

http://www.hslda.org/docs/news/2013/201302110.asp

I particularly recommend Home School Legal Defense (HSLDA).  Also, if you would like to donate to Home School Legal Defense for this case please click http://fundly.com/mercuryoneeducation, Mercury One is hosting a campaign where 100% of the funds it raises through this link will go to Home School Legal Defense for this case and others to protect the rights of homeschooling families.