In the wake of the Justina Pelletier custody saga, a bipartisan group of House lawmakers have introduced a bill to limit federal funding for medical research involving foster children.
"Sixteen months ago, Justina was a figure skater. Today, she cannot stand, sit or walk on her own," Rep. Michele Bachmann, Minnesota Republican, said of the bill, dubbed "Justina's Law."
"It is unconscionable what happened to Justina, and we must do all we can to prevent it from ever happening again. Removing federal funding from such experimentation is an important first step," said Mrs. Bachmann.
"Foster children are particularly vulnerable because they may not have parents to advocate for them," said Rep. Karen Bass, California Democrat, who is co-sponsoring the bill with Rep. Jim McDermott, Washington Democrat, and Rep. Tom Marino, Pennsylvania Republican.
All four lawmakers are co-chairmen of the Congressional Caucus on Foster Youth in the House of Representatives.
Justina, 16, spent 16 months in custody of Massachusetts' child welfare agency, which placed her in a hospital psychiatric ward for several months. Justina was released to her family in June after a two-state battle involving a juvenile court and political leaders.
The House bill would tell hospitals and other research organizations they can't "just do what they want" with children who are separated from their parents, said Daniel Schmid, an attorney with Liberty Counsel, which worked to win Justina's release from state care.
Under U.S. Department of Health and Human Services rules — which are often adopted by hospitals and other institutions — wards of the state may sometimes be included in risky research that doesn't benefit them.
The Justina bill "heightens the standard" by disallowing foster children from being involved in taxpayer-funded research that carries "greater-than-minimal risk with no or minimal prospect of direct benefit," Mr. Schmid said.
Liberty Counsel said Friday that when Justina, then age 14, was taken by her mother, Linda Pelletier, to Boston Children's Hospital in February 2013, a doctor changed her diagnosis from mitochondrial disease — a physical ailment — to somatoform disorder — a mental illness. A hospital psychologist who was researching somatoform disorder under a federal grant agreed with the new diagnosis.
When Justina's parents objected and sought to move her to another hospital, they were reported to Massachusetts child welfare officials for medical child abuse, and Justina was taken into state custody.
Hospital and state officials have noted that they cannot discuss details of Justina's case due to privacy and confidentiality rules. A spokesman for Boston Children's Hospital said recently that Justina's diagnosis and treatment plan were "thorough and in accordance with best practices" by an team of specialists in several disciplines, in and out of the hospital.
The Rev. Patrick Mahoney, a Pelletier family advocate and friend, said Friday that Justina is "180 degrees different, for the positive" since coming home to West Hartford, Connecticut. Sadly, her reading level has dropped several grades, but she is enrolling in school as soon as possible, he said.
The federal legislation is necessary to protect families, said Mr. Mahoney. Scores of people around the country have reported problems with foster care, and "all along, there was this sense that Justina's case was, if you will, a canary in the coal mine" with respect to parents seeing their rights usurped by government entities.
Justina wants to tell her own story, Mr. Mahoney added. Recently, she said, unsolicited, "I want to go down to Washington, D.C., and speak," he said.
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