From the time he was a baby, Jennifer Gross knew something was not right with the way her son, Michael, was developing. But he was healthy and basically happy, and doctors and guidance counselors dismissed her concerns as the worries of an overprotective mom.
It wasn’t until he was 18–after years of being bullied, after he’d been through depression and suicide attempts–that Michael was diagnosed with Asperger’s syndrome.
Now 20, Michael believes the system failed him and has given up on treatment.
Despite all that, Gross thinks of her son as one of the lucky ones.
A child psychiatrist agreed to see him despite having a full practice. Other families get turned away from the limited number of practices in the state.
Michael is now in college, hoping to pursue a career that involves helping children avoid what he went through.
And Gross now advocates for mental health care.
“If we give kids the help that they need early, and we give them the appropriate services at the right time, so many problems down the line can be avoided,” said Gross, who works for the National Alliance on Mental Illness of Connecticut and the Eastern Regional Mental Health Board.
A group of pediatricians and child psychiatrists is working to improve care for children like Michael, with a plan aimed at reorganizing what they say is a fragmented and poorly coordinated system that too often fails to address children’s mental health needs.
The proposed changes are aimed at redirecting existing resources to better identify mental health issues early and make care more accessible.
Doing so would not likely require new money from the state, said Dr. Andrew Lustbader, a child psychiatrist and chairman of the task force that created the plan, a joint effort of the Connecticut chapters of the American Academy of Pediatrics and the American Academy of Child and Adolescent Psychiatry.
But the plan will require support from lawmakers.
Part of the effort to engage them will take place today, when the three gubernatorial candidates attend an education forum on children’s mental health issues. The forum, at 6:30 p.m. at Woodrow Wilson Middle School in Middletown, is sponsored by the Keep the Promise Coalition of mental health advocacy groups.
It could be a delicate road ahead. Responsibility for children’s mental health is spread across agencies and jurisdictions, and there is a shortage of mental health specialists who treat children. Lustbader said the group hopes to partner with insurers and state agencies. But coordinating so many organizations can be difficult.
Those involved say there is little choice.
“There’s a crisis in children’s mental health in this state,” state Child Advocate Jeanne Milstein said. “There are so many unmet needs. Our phones ring off the hook here.”
The callers include children, emergency rooms backed up with children, and parents who have to wait nine months to get their children assessed.
The authors of the plan, called the Mental Health Care Blueprint for Children in Connecticut, cite estimates that nearly one in five American children has a diagnosable mental disorder, and that 75 to 80 percent of them never receive treatment. That can lead to consequences including children suffering, poor academic performance, social failure, and costs to society stemming from pressure on families, drug addiction and incarceration.
The Blueprint is aimed at identifying children with problems and getting them access to quality care.
“Our job is to figure out how to best do that with a shortage of capacity,” Lustbader said.
To reach all children, the Blueprint envisions key roles for pediatricians and schools. Primary care doctors, in particular, are seen as a way to expand capacity in the health care system. The Blueprint calls for training pediatricians to better diagnose mental health issues, independently manage children with less complex conditions and make referrals for those who need more specialized care.
To support them, the Blueprint proposes creating a system of mental health workers available to consult with primary care doctors about any child, regardless of insurance status. The teams of mental health workers would be regionalized to foster relationships with pediatricians. The Blueprint estimates that creating the system would cost $900,000 a year.
Lustbader acknowledged that it could be hard to give already busy pediatricians additional responsibilities. But he said their work could be more efficient if they have access to child psychiatrists to help address patient issues. Pediatricians could also be better compensated for working on mental health issues, he said.
The Blueprint also proposes expanding school-based programs, creating teams within school districts that can handle mental health care and train school staff to recognize mental health problems. The plan calls for several state departments that already fund mental health services to collaborate in schools, coordinating existing resources for the maximum benefit. Child guidance centers would be expanded and serve as a nexus for regionalized mental health care services.
“We really want everybody to work together,” Lustbader said. “That’s the key to this, to get all the systems to work together.”
Having a well-organized system would also allow for better coordinating care for the relatively small number of children with the most severe needs.
The Blueprint urges the state to maintain Riverview Hospital, which some lawmakers have suggested closing to save money.
“Although this is an appealing option for short term budget stabilization, the long-term costs to the State of Connecticut would be devastating,” the Blueprint says. “The needs of these very sick children would threaten to overwhelm a less intensive and comprehensive system of care.”
A New Way to Pay
One way to pay for the changes, the Blueprint suggests, is to overhaul the way mental health care is funded for children with private health insurance, creating a system similar to the much-lauded Behavioral Health Partnership used in the state’s HUSKY program for low-income children and families.
Since 2006, the state has contracted with the managed care company ValueOptions to administer mental health care for children and adults in HUSKY, children served by the Department of Children and Families, and some children with specialized needs. Some of ValueOptions’ pay is contingent on meeting performance goals, which the Blueprint authors said offers an incentive to provide funding for mental health services.
From the first to second year the state used the model, the number of children receiving outpatient services increased by 5.5 percent, while the number of children admitted to inpatient care fell.
The Blueprint proposes using a similar not-for-profit system to manage mental health care for children covered by private insurance, replacing the current system, in which many insurers contract out the management of mental health services.
To fund it, the plan proposes creating a fund using money paid by health and life insurance companies. The fund would then be used to pay for mental health services. Lustbader said the fund would not pose additional costs to insurers because it would replace the money they now pay for mental health care. The model is similar to a fund health and life insurance companies currently pay into that the state uses to purchase childhood vaccines, which it then distributes free to health care providers, the Blueprint notes.
The Blueprint argues that such a model would help insurers and self-insured businesses by providing more efficient care without additional cost.
The group behind the Blueprint recently received funding for an economic impact study of the proposal. They hope to show that it will ultimately save the state money.
After that, Lustbader said, the group will seek to have the changes implemented through legislation, possibly as soon as the next legislative session.
Milstein, who asked Lustbader and other doctors to create a comprehensive proposal after they came to her with suggestions, said she was excited by the Blueprint’s potential to address unmet needs.
“It’s certainly a long-term plan. It’s not going to be implemented overnight,” she said. “But we’re all in this for the long haul.”