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.
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.
"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."
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."
Pelletier said while at Children's Hospital his daughter had missed holidays and was unable to receive visits from her family. He 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.