Broken
Lack of mental health care for her adoptive kids has caused grief to Kathy O'Loughlin's family. Now she's on a mission to fix the system.
MEDFORD - On one chair in the immaculate living room, Leanna sits cross-legged, doing her homework and nibbling from a platter of cookies. On the couch, Anthony takes deep gulps of milk and listens while his mother speaks, often chiming in. Rufus, the friendly family Husky, wanders in and out.
It could be any happy suburban home, but as Kathy O'Loughlin tells the story of her family, it sounds like a house of horrors. In fact, Anthony is at home only for a short visit; he is not welcome for overnight stays. Leanna was in a residential home for at-risk girls until just before Thanksgiving, when her allotted time there ran out; her parents are desperate to get her into another supervised program. A third child, Brittany, is in jail awaiting trial for assault.
Kathy and Steve O'Loughlin's only biological child, Stephen, was 13 years old when they decided to expand their small family through adoption. After completing a parenting program required by the state, they got a call from the Department of Social Services: A 4-year-old girl in foster care was free for adoption.
When they visited her, the caseworker informed them that the girl had two siblings - same mother, different fathers. They, too, needed a home. Like DSS, the O'Loughlins didn't want to break up a family. Kathy remembers saying, "How hard can this be?"
Within 24 hours of bringing the children home, she got her answer.
"Oh my god, we were in shock," says Kathy. "These kids ran 24/7. Their behaviors were really bizarre." One tried to jump out the second-floor window into the swimming pool. Another hoarded food in drawers and under the bed. The youngest, born in jail, was considered the healthiest: Her incarcerated mother, who had a history of mental illness, drug abuse, and prostitution, had been unable to abuse drugs and alcohol.
Now, 13 years later, with countless diagnoses, medications, therapists, residential placements, emergency room visits and court cases, none of the three adopted children is living at home permanently. Anthony is on probation for stealing from his brother and is living with a friend's family. "We weren't taught right from wrong when we were real little," he says.
Stephen O'Loughlin is 26, in law school - and therapy - and pressed charges against Anthony for stealing nearly $3,000 from his checking account last April. Before he realized his account had been emptied, Stephen bounced checks, ruined his credit rating, and could not get student loans for this year; he had to borrow from his parents to stay in law school.
"I'm sick of all of them," he says of the three adopted siblings. "They're not family to me."
His mother, who has a dental degree from Tufts and a master's in public health from Harvard, was the CEO at Delta Dental of Massachusetts until recently. Now, she's a woman on a mission, taking her personal story public, she says, to spare other families the grief that has run like a river through her own.
Her activism comes at a fortuitous moment: Pending legislation would improve services for the estimated 100,000 children in Massachusetts who do not get the mental health care they need, according to the Children's Mental Health Campaign, a coalition of 90 advocacy groups. The legislation, which is still in committee, would promote early behavioral screenings by pediatricians and in preschools. It would require insurance companies to reimburse mental health professionals for time spent consulting with teachers, doctors, and others. And it would expand public health benefits to youths through age 20.
At a recent hearing at the state house, Kathy described the family's plight to legislators: "Despite being well educated and with the resources to provide the best care for our children, our efforts were frustrated at every turn. Our private health insurance limited each child to six mental health visits a year, regardless of what level of care they needed. Public insurance offered long waits and inconsistent care. We have even resorted to surrendering custody of our children one at a time to DSS in order to get critically needed services. No parent should be forced to make that choice."
Lisa Lambert, executive director of the Parent/Professional Advocacy League, which represents 4,000 families of children with mental health needs, agrees that the system is broken. "It's common for people to talk about dysfunctional families, but in reality it's the system that's dysfunctional," she says. "If you look at how well educated and skilled they [the O'Loughlins] are, if they can't get services, it really is telling."
Misspent time, money
Anthony was 6, Brittany 5, and Leanna 4 when the O'Loughlins brought them to their comfortable Medford home. Anthony, "skinny as a rail," would stash food in his bedroom. Brittany was self-destructive, setting fires in her room and keeping knives under her pillow. Leanna ran away time and again.
No one at DSS told the O'Loughlins the children had been badly abused. Over the years the three have been diagnosed with attention deficit hyperactivity disorder, obsessive compulsive disorder, bipolar disorder, narcissistic personality disorder, affective attachment disorder, post traumatic stress disorder, reactive attachment disorder, oppositional defiant disorder, and schizophrenia.
Between private insurance and Medicaid, O'Loughlin estimates that more than $1 million has been spent on their care. "And look where we are," she says. "One is in jail, the other is a hair's breadth away from jail, and the third was just discharged from one residential school and we're looking for another."
Much of the money has been misspent on a long line of rotating therapists who started over each time one of the children was in crisis, Kathy says. There was no one who followed them long-term. A smorgasbord of medications often had disabling side effects and no therapeutic value, she says, and each child has been stuck for months in acute-care facilities, waiting for a scarce bed in long-term care. In one week, Steve O'Loughlin, a heating, ventilation, and air conditioner mechanic, took the children to a total of 24 appointments.
There were times when the O'Loughlins were paying up to $900 a week out of their own pockets for mental health appointments, despite the fact that they had both private and public insurance for the children. That Kathy headed up a large dental insurance company allows her to see both sides of the coverage issue.
"From my perspective, insurance companies don't want to have to pay for ineffective care," she says. "We need to fix the system first and then they'll pay for it." Even though Massachusetts passed a law in 2000 mandating that mental disorders be covered as fully as physical diseases, there are gaps that would be covered by another bill pending in the legislature.
O'Loughlin acknowledges the fight will be tough. "I think the health insurance lobby will be up there screaming bloody murder."
Susan Leahy, a spokeswoman for Blue Cross Blue Shield of Massachusetts, says the group doesn't oppose the legislation, if it's balanced. "We know that there are gaps in the system, and we've worked cooperatively with the advocates and the providers of mental health care for children to strengthen the care that they need," she says. "However, we need to balance the needs of affordability while at the same time ensuring that this care is evidence-based and clinically appropriate."
But Dr. Marylou Buyse, president of the nonprofit Massachusetts Association of Health Plans, says her group opposes expanding the so-called parity law. "Parity is supposed to be about treating mental health the same way medical diseases are treated," says Buyse, an internist. "But they're asking for what I call 'parity plus plus.' They want to be treated well beyond what's done on the medical side. The cost of care would go up. The premiums would go up."
Given the chaotic state of mental health care for children in Massachusetts, Mary Lou Sudders, the former mental health commissioner, says she's surprised that the million-plus dollars spent on the O'Loughlin children isn't higher. It is people like Kathy O'Loughlin - who lives with the fallout - who will ultimately change the mental health system, she says.
"But it will be a long time coming," predicts Sudders, who is now president of the Massachusetts Society for the Prevention of Cruelty to Children. "This is not about tinkering with the system. This is about major reform. If we can do universal health care in Massachusetts, why can't we address children's mental health?"
A list of "ifs"
Brittany, 18, calls home daily from the South Bay Correctional Center in Dorchester, where she is being held on charges of assaulting a staffer at a psychiatric facility. She may soon be released and is on a waiting list for Department of Mental Health housing. In jail she attempted suicide three times, her parents say, and she needs a psychiatric residence with a 12-step program. Steve O'Loughlin does not want her home - she once slashed him with a knife when he told her it was bedtime.
Leanna, 17, was recently discharged from a residential school in Arlington because her 45-day court-ordered placement for psychiatric evaluation was up. When her parents attended an American Dental Association conference in San Francisco last September, she ran from the school, broke into the house, and threw a party that was busted by police. Her parents say $2,700 worth of items was stolen that night. She's currently living at home - but, say her parents, only until a psychiatric residential program can be found.
Anthony, who has been diagnosed with diabetes, is working to pay restitution to his brother. He recently came home for his 20th birthday dinner and, angry over school and girlfriend problems, smashed a fist through the dining room window. He attends school only sporadically.
During a recent visit home, Anthony and Leanna talk about family vacations and happier times. "My mom is the best mother in the world," says Leanna. Both say they would like to live at home if they can get the help they need.
Kathy O'Loughlin has a list of "ifs" that could have meant a better outcome for her family: If there was early diagnosis of the kids' mental illness and full disclosure of abuse and neglect from DSS when the O'Loughlins adopted them. If there was home-based family therapy with early intervention. If they had the same therapists for continuity of care. If they weren't treated with "a shotgun blast of drugs with horrible side effects and little or no therapeutic benefit." If teachers had recognized mental illness and known how to cope with it. If there had been a special education track for kids with mental illness. If there were enough acute and long-term care beds. If state agencies cooperated instead of fighting over jurisdiction and payment.
But she also believes in tough love: When the kids can respect the house rules and avoid criminal behavior, they can come home. "The pain of not having them in our house is a terrible sense of failure for us," Kathy says. "We would love for them to come home and finish school and get jobs. We're not giving up hope, but the odds are against us."
Her husband is more blunt: "My wife is a wonderful person. She has a heart of gold. But my household is a nuthouse." 