Thursday, June 25, 2015

Justina's law

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.

Justina Pelletier, who was under treatment for mitochondrial disease at Tufts Medical Center, was transferred to Boston Children's Hospital in February 2013, where medical staff there made a different diagnosis and ultimately ended her medication regime and moved her to a psychiatric unit, her father Lou Pelletier told the Judiciary Committee.   Relaying events that were covered in the media and drew national attention, Pelletier said he and his wife were ordered out of Children's Hospital when they attempted to return their daughter to Tufts, and the Department of Children and Families gained custody of her.   In June 2014, Justina, now 17, was allowed to return home. Pelletier credited his violation of a gag order issued by a judge with raising the public profile of the case and creating political pressure that resulted in the agreement.   "Her physical condition was allowed to deteriorate," Pelletier told the committee. He said, "They say I won. I got my daughter back, but I didn't get my same daughter."

Philip Moran, a Salem attorney who represented the Pelletiers in 2014, said the U.S. Supreme Court and the state Supreme Judicial Court have "repeatedly said that parents have a fundamental constitutional right" to choose medical treatment for their children "without unjustified government intrusion."
Rep. James Lyons, an Andover Republican whose district includes Tewksbury, prompted some of Pelletier's account with questions from his seat on the committee.

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  1. "When complications set in, as they often did for Isaiah, the hospital was ill-equipped to diagnose or relieve his suffering. Michelle, a registered nurse by profession, believed it was her right and responsibility as his mother to have her son transferred to a hospital that had successfully treated him in the past.

    The hospital administration did not see it that way.

    Instead of complying, two social workers and the director of the Pediatric Intensive Care Unit (PICU) led Michelle into a small room. There she was stripped of her hospital band and parental rights. After informing the distraught mother they were charging her with “medical child abuse” (also known as Munchausen by proxy), they waited for her to stop sobbing and escorted her out of the hospital.

    While in the ICU, Isaiah was forcibly separated from his mother far beyond the customary 48 hours. He was not allowed to see or hear from his mother for 24 days. He was then dumped in a foster home.

    That was over a year ago."


    Proposed Missouri Medical Child Abuse Law Prompts Sharp Division

    "This is being called 'Isaiah's law', for Isaiah Rider..." Also, see Rep. Wilson above.

    From Medical Child Abuse April 15, 2015 and comment April 19, 2015 10:25 pm

  2. Today Justina’s father Lou and elder sister Jennifer returned to Massachusetts to testify at a public hearing at the State House in support of House Bill 1469 – An Act called Justina’s Law – filed by Marc Lombardo, Representative (R) for Billerica and supported by James Lyons, Representative (R) for Andover...

    Committee Chair Senator William Brownsberger (D) of Belmont invited testimony from Lou Pelletier who testified eloquently about the sheer horror his daughter and his family went through for 17 months at the hands of DCF and Harvard’s Children’s Hospital and the purgatory they were suddenly cast into by Dr Alice Newton without any recourse. Lou also testified that the parents were stripped of their family rights because Harvard’s Children’s Hospital disagreed with a diagnosis made by Tufts Medical Center. The parents were condemned as abusive because they believed Tufts’ diagnosis was correct and that Harvard’s was incorrect. They lost their child for that effrontery.

    Senator Brownsberger then invited testimony from Jennifer Pelletier who gave wrenching testimony about what her little sister went through at the hands of the Government and Harvard’s Children’s Hospital. Jennifer testified that she was Justina’s ice skating teacher and that Justina was doing great at ice skating till she ended up at Harvard’s Children’s Hospital and now is unable to even stand by herself.

    Representative Lyons then elicited testimony from Lou Pelletier about the actual circumstances of his daughter being taken away from her parents one Thursday afternoon and how the child did not know for 2 whole days what had happened and how she was denied her basic civil and human rights including family love, religious freedom and her right to an education. Lou also testified clearly that he called 911 to seek help from Boston Police to prevent Harvard’s Children’s Hospital from kidnapping his precious child but that Boston Police refused to help a powerless family from Connecticut fight a Harvard Hospital and never ever did so...

    Attorney Moran put on the record that parents have the absolute right to choose treatment decisions in the best interest of their child, that parents have the right to choose a non-Harvard hospital over a Harvard hospital and that they should not be punished for doing so by having the state of Massachusetts take their child away and thrown into foster care. He hoped the Committee would pass this Bill so no other family ever has to go through what Justina and her family were put through.

  3. by Rep. Marc Lombardo
    As you may be aware, I am the Sponsor of H.1469, an act entitled “Justina’s Law.” As a father, I was moved when I saw Lou Pelletier on TV pleading for help in getting his daughter released from Massachusetts DCF custody. What Justina and her family got caught up in is nothing short of a tragedy.

    I immediately came to help the Pelletier family to get Justina released from DCF custody. I made a lot of noise, I garnered support from colleagues like Representative Jim Lyons, we met with the administration, and we made sure the public knew Justina’s story and expressed their anger. A few months later, Justina was released from DCF custody, but sadly the damage that was done to her due to the lack of care may be irreparable.

    My bill, “Justina’s Bill,” will ensure that no child, no family, who is following the medical advice of a licensed practitioner in good faith, can ever become the subject of a tug of war between rival medical facilities and the Commonwealth of Massachusetts.

    My bill will ensure that PARENTS have the right to make medical decisions for their children.

    In regards to an update on the bill, on June 24, Lou Pelletier and his daughter Jennifer joined me at the State House to testify on behalf of H.1469. The Joint Judiciary Committee has not made a recommendation on the bill yet. I encourage you to call the Chairmen of the committee to ask for a favorable passage to the bill.

    Thank you for your continued support.
    Marc Lombardo

    Representative Marc Lombardo sponsored H.1469, called “Justina’s Law,” to make sure that what happened to Justina Pelletier never happens again in this state. In late June, Lou Pelletier and his daughter Jennifer joined Marc and others at the State House to testify before the Joint Judiciary Committee in favor of the bill. To date, the bill has not been voted on one way or another by the committee. Marc has asked us to call the chairmen of the committee, William Brownsberger and John Fernandes, and ask them for a favorable passage of the bill. You can read the bill here: