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Analysis

Pressures mounted to end Justina Pelletier custody fight

When juvenile court judges and the state’s child-protection agency allow children in custody to return to their parents, there is supposed to be only one standard: the best interests of the child.

But political, legal, and financial factors appear to have also figured prominently in resolving the impasse in the 16-month-long custody battle over Connecticut teenager Justina Pelletier, and, some child welfare specialists argue, the factors may have played outsized roles. The case was locked in acrimony between the parents and the Department of Children and Families , and as recently as March the judge in the case deemed the parents unfit.

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Much changed in the past month, however.

Juvenile Court Judge Joseph Johnston, at the request of DCF, restored custody to the parents Tuesday, ending the case that the child welfare agency had brought against the parents, whom officials had accused of medical child abuse. On Wednesday, Justina returned to her family’s home in West Hartford, Conn., cradled in her father’s arms.

Justina’s parents and their advocates say if it is true that state officials bowed to outside pressure, then it was overdue in getting the teenager back to her home. But other observers say the stunning pace of change suggests political and legal factors were in play.

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“There was such a turnaround of opinion in such a short span of time,” said a longtime child protection specialist who has followed the case closely.

The impact of this week’s events will greatly alter the life of Justina, who seems physically stable and happy to be home, but still has gastrointestinal problems and trouble walking. Her parents are now free to care for their child as they see fit without state interference.

‘There was such a turnaround of opinion in such a short span of time.’

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Lou and Linda Pelletier appear to be wasting no time using that freedom, unconcerned by critics in the medical community who say they are too one-dimensional in their view of Justina’s condition. Linda Pelletier insisted in a telephone interview Wednesday that she is confident her child’s ailments are the result of a rare metabolic disorder and unrelated to psychiatric issues.

Asked how confident she was of this view, she replied, “a million percent.”

Though the state had encouraged psychological treatment for Justina in the belief that some of her ailments are psychosomatic, Linda Pelletier said she has no plans to take her child for counseling apart from what the West Hartford schools recommend as part of her special education plan.

The pressure to settle the case, coming from the highest levels of state government, intensified this year. As conservative religious groups, among others, picketed the State House and brought the “Free Justina” message to radio talk shows, Governor Deval Patrick dispatched his top health official, John Polanowicz, to broker a resolution.

By that time, DCF social workers, the judge, and some of Justina’s doctors were getting threatening calls and hate mail from across the country.

A major breakthrough came when Polanowicz helped secure a pathway in mid-May for the 16-year-old to leave Massachusetts: While DCF retained custody, Justina was transferred to a residential treatment center in Connecticut closer to her parents’ home.

Justina’s return to Connecticut had major legal and financial implications. Since February 2013, Massachusetts had kept custody of — and paid for — a child from another state. The cost of Justina’s care had climbed to at least $400,000, based on Medicaid rates that apply to children in DCF care. Her case consumed vast amounts of energy within a state agency already plagued this year by child deaths under its watch, which led to the ousting of its commissioner.

Judge Johnston had hoped Connecticut’s child-protection agency would agree to accept oversight of the teen, engaging in a collegial baton pass often seen between states when children move. But that was not to be. Officials in Connecticut made clear they wanted nothing to do with the contentious case involving parental rights and the controversial new field of medical child abuse.

That meant Massachusetts officials had to come up with a solution on their own.

When Polanowicz helped arrange Justina’s transfer to JRI Susan Wayne Center for Excellence in Thompson, Conn., some longtime child-welfare experts were not surprised that the child protection agency in Massachusetts, in just four weeks, moved to dismiss the case against the Pelletiers.

Massachusetts officials recognized that if they extricated themselves from the case swiftly, any new complaint involving Justina’s parents would have to be handled by Connecticut’s child protection agency. Massachusetts would be out of the picture financially as well.

DCF filed a motion June 6 to dismiss the case. The judge went along Tuesday, citing “credible evidence that circumstances have changed.” The order said nothing about the diagnostic dispute, one in which he sided as recently as March with Boston Children’s Hospital, saying Justina’s ailments had psychological origins.

The hospital staff had filed medical child abuse charges against the parents in February 2013, a few days after Justina arrived in their emergency room. Her mother insisted that Justina was suffering from complications of mitochondrial disorder, for which the girl had been treated at Tufts Medical Center for more than a year.

Yet, more than a year later, many child welfare officials said they could not argue that moving Justina home is not in her best interests, given some sobering truths. She had not been getting much better in DCF care, and her mobility appears worse, as the teen who once walked easily now relies on a wheelchair.

While Justina appears to be eating well and she speaks clearly — something that wasn’t true when she entered Children’s — she hasn’t had anything approaching the turnaround clinicians hoped for.

In filing medical child abuse charges against the parents, Children’s staff alleged that the parents ignored Justina’s mental health needs and sought unnecessary medical interventions. But the extensive psychological services offered to the teenager over 16 months do not appear to have improved her physical ailments.

Marylou Sudders, a former state mental health commissioner who now teaches at Boston College, said it appeared that Justina’s condition “plateaued,” and there was no reason to keep holding her.

The attention to Justina’s case has prompted considerable soul searching within the medical profession over how to avoid the missteps that hardened the standoff between providers and the parents.

One issue: that an excessive focus on naming a diagnosis in murky, complex cases is more likely to bring fireworks than clarity.

Dr. Danya Glaser, a British psychiatrist and coauthor of an influential paper on medical child abuse published this year in the medical journal The Lancet, suggested it might be more productive for physicians to accept that some cases involve “medically unexplained conditions” rather than insisting on a diagnosis for which there is little objective support.

“What becomes more and more important is the question of the child’s functioning, and how best to improve it, regardless of the question of diagnosis,” Glaser said in an e-mail interview. “This approach requires, however, a ‘buy-in’ by all professionals involved and a firm approach as parents are sometimes more keen on a diagnosis than on attempts to restore the child’s functioning.”

In Justina’s case, her parents objected angrily to the insistence of doctors at Children’s that the family accept a diagnosis of somatoform disorder, which is used to describe a patient with real symptoms that have no apparent physical or organic basis.

Another issue: When is it appropriate for hospitals to file medical child abuse charges? Because such cases can often be difficult to sort out and because hospital workers are mandated by law to report abuse suspicions, there can be a natural inclination to file allegations with the state early.

But more hospitals are talking about introducing summit meetings that include multiple providers, including those not directly involved in the case, to review issues before filing charges of medical child abuse.

Some child-welfare specialists said they wonder how Justina will fare if she faces continued publicity, as the Free Justina campaign talks about championing legislation to avoid cases like this.

Justina’s mother said her daughter’s original team of Tufts specialists are back in her life, including Dr. Mark Korson has resumed his leading role in her care as her metabolism specialist.

A child psychiatrist who has handled medical child abuse cases said such cases require deep sensitivity, including understanding how parents of children with chronic illnesses can behave, especially if they feel deeply misunderstood.

“Being the parent of a child with disabilities colors your role in the world,” he said. “You act in ways you hadn’t planned.”

Patricia Wen can be reached at wen@globe.com.
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