It expands by word of mouth and whispers, the informal network of mothers who have found in each other a place to talk about having children with illnesses that are often kept secret.
One mother whose son is struggling found them because she was crying every day at work. A coworker who knew someone in the group got her in touch with the other moms.
Other people approach Mary Jo Andrews after she speaks at events about mental illness. “Are you taking new people in your group?” they ask. She tries to make sure they’d fit, that they’re not dealing with “normal teenage stuff.”
This group is for moms whose children have serious mental illness.
It’s a group of people who understand what it’s like to sit outside a child’s bedroom at night, listening to make sure she doesn’t hang herself or wondering whether the fact that he didn’t audibly roll over in a while means he found some pills somewhere and is in a coma.
The moms try to get from each other what they say is almost impossible to find elsewhere: Help figuring out the right services for a teenager at risk of suicide; recommendations for good child and adolescent psychiatrists who take both insurance and new patients; tips for getting insurance approval for a kid to spend another day in a psychiatric hospital; guidance navigating mental health, medical, insurance and school systems that don’t seem to coordinate with each other and often seem insurmountable to families in crisis.
The group began as a handful of moms from the Farmington Valley, meeting once a month for dinner. Then the Newtown shootings happened, and the mothers felt they needed to do more. They spoke to legislators. They shared their families’ struggles publicly. Some appeared on 60 Minutes.
Since then, the group has tripled in size, with parents from as far as Burlington, Glastonbury, Hamden, Manchester and Bristol.
“That group just keeps growing and growing, which just shows you this huge untapped need out there,” said Nancy Aker, one of the moms.
Their experiences have given them a perspective on the state’s mental health system and on the unmet needs. And they’ve gained a voice at a time when state officials are looking for ways to better address mental health.
Aker, Andrews and a handful of other mothers in the group have developed a set of recommendations. They’re hoping to influence the plan being developed by the state Department of Children and Families for meeting the mental, emotional and behavioral health needs of all children in the state -- a plan required as part of legislation passed in the wake of the Newtown shootings.
Among their recommendations: Change how private insurance handles mental health coverage. Help teachers better respond to students with mental health needs. Expand the use of behavioral health screening in routine physical exams to identify kids' needs early, when problems can more easily be addressed. Develop an office to review research on mental health research and programs, with the goal of making new treatments available as soon as possible. Create a clearinghouse to help people find information so they don’t have to rely on word of mouth.
Some are likely to be controversial. Andrews worries that most of the items will cost money and wonders where it will come from.
But she and others note that there are also costs from changing nothing, like the costs of young people growing up without the care they need and ending up in the public mental health system, on disability, homeless or in prison.
“We’re just raising a generation of kids that have not been able to reach their potential,” said Carol Poehnert, one of the mothers who worked on the recommendations.
And there are costs to families. To pay for her 18-year-old daughter’s residential treatment, Andrews and her husband tapped the equity out of their house, drained their daughter’s college savings, borrowed from family and took the maximum loan against her 401k.
One woman in the group who has private health insurance spent so much out-of-pocket on her child’s care last year that her unreimbursed medical expenses exceeded her gross income.
Here are some of The Moms’ Mental Health Advocacy Group’s recommendations, and the stories behind them. (For the full list, click here.)
Somewhere to turn for help
The mothers said most of what they learned about the types of services available, and how to access them, has been through the moms’ group.
“This is not information that should be spread haphazardly by word of mouth,” they wrote in their recommendations, detailed in a letter to the legislative co-chairwomen of the Committee on Children.
Even clinicians often don’t know the range of resources that could help a family, they wrote.
The mothers suggested that there should be a comprehensive clearinghouse for information on resources available to help people dealing with mental health issues, and recommended that it include feedback on providers and programs.
Part of their suggestion is being implemented. A law passed this year requires the state Office of the Healthcare Advocate to create an information and referral service to provide information about behavioral health care, referrals and access to providers.
But the mothers said having a resource isn’t enough. Instead, they said, there should be a care coordinator assigned to each family with a child with severe mental illness.
“Believe us -- a parent whose child is suicidal or otherwise severely mentally ill is in no shape to successfully navigate even the most user-friendly clearinghouse,” they wrote.
Stigma and schools
Having a severely ill child is hard, but the moms say there’s an added challenge when the illness is stigmatized, when people don’t understand it, or view its manifestations as behavioral choices, not symptoms. Stigma keeps people from seeking care they need and keeps families from seeking support, even from relatives, they say.
They say school personnel don't always understand mental illness and can handle situations poorly, like asking a student in class, "Did you forget your meds today?"
“For children who are seen by teachers and students as ‘different,’ bullying becomes commonplace,” the moms wrote.
Beverley Brakeman, who helped write the recommendations, sees stigma in the way her 14-year-old daughter covers her arms, which are scarred from cutting herself. Her daughter would be shunned and embarrassed if people saw, she said.
If she had cancer and lost her hair from chemotherapy, people would rally around her, maybe even run a 5k in her name, Brakeman said. She wishes the same could be true of her daughter’s sickness.
Many of the mothers’ recommendations related to stigma involve education. They suggested that training on mental illness for teachers and other school personnel include information on stigma, possibly from a parent of a child with mental illness or a teen or young adult who has dealt with mental illness.
They also recommended having school health classes include units on mental illness and stigma, to give students an understanding of what mental illness is -- and isn’t. State law requires school health classes to cover mental and emotional health, but doesn’t specify stigma or mental illness.
In addition, they suggested that teachers who have multiple students with special needs should have significantly smaller classroom sizes or additional support, based on the degree of the students’ needs. They suggested that the state bear the cost, rather than individual school districts.
Insurance and access to care
Many of the mothers said their private insurance coverage has posed barriers to getting care. They cited health plans that provide limited or no coverage for certain care, such as intensive outpatient programs or in-home services. In other cases, they say, the scrutiny their children’s clinicians go through to justify keeping a kid inpatient for another day can be significant. They described one case in which a child was actively suicidal but sent home two days later when the insurance company deemed inpatient care not medically necessary.
In part, the mothers see stigma: The same type of treatment limits wouldn’t be tolerated if applied to children with cancer or diabetes, they say.
But they also note that there are differences between mental illness and physical conditions.
“There is no x-ray or blood test for most mental illnesses,” they wrote.
Because there is subjectivity in the treatment of mental illness, they said, it makes the most sense for insurance companies to rely on the treatment plan developed by each child’s mental health providers.
Keith Stover, a lobbyist for the Connecticut Association of Health Plans, used a similar analogy in describing the challenges of determining how to cover mental health services, noting that there’s rarely a clear diagnostic test that leads to an exact treatment protocol.
“That’s really a big part of the difficulty,” he said. “I really think it’s important to say that the difficulty is not around whether to treat or lack of desire to get the member into the right treatment, because frankly, from a purely pecuniary perspective, it is always in the payer’s interest to find the right thing as quickly as possible and get the thing treated.”
But Stover said it’s important for insurers to be sure they’re paying for treatments that have been demonstrated to work.
“It’s not in our interest to have someone in an inpatient setting when they would be flourishing or getting better more quickly in an outpatient setting,” he said. “But it’s also not in our interest, or the member’s interest, to have courses of treatment which aren’t adequately peer-reviewed and evidence-based.”
Stover said the insurance industry has been working, particularly in recent years, on addressing access to mental health services in a timely manner, including through changes made in legislation passed after the Newtown shootings.
In the past, officials at the Connecticut Insurance Department have said that some problems people face getting mental health services covered were the result of issues in the claims process, such as incomplete information, rather than insurance companies skirting coverage rules. They noted that because many mental health providers don't accept insurance, families often submit claims themselves and might not have the expertise to ensure they're accepted the first time. The department has released a toolkit to help people filing claims.
The mothers’ group’s other recommendations include:
- Requiring insurance carriers to work with mental health professionals to create a list of services needed to adequately treat children and require that carriers cover them.
- Changing the criteria used to determine coverage of mental health services to provide a higher level of deference to the recommendations of a child’s treatment team and put the burden on the insurer to defend a decision to deny treatment recommended by the patient’s clinicians.
- Having the state create incentives to encourage mental health providers to accept insurance. The group suggested school loan forgiveness or tax incentives as possible options.
The state child welfare agency
Some families that have private health insurance turn to the state Department of Children and Families for help accessing services they might not otherwise be able to get. The program is known as voluntary services and is available to families even if they’re not involved in the child welfare system.
But some who have tried to access services through the agency say it’s been difficult, particularly in recent years. They say they’re particularly concerned about Commissioner Joette Katz’s push to dramatically reduce the placement of youth in residential treatment and out-of-state facilities.
DCF spokesman Gary Kleeblatt said the department’s efforts are in line with a national move toward providing services in children’s homes or in community settings, rather than in residential treatment facilities or group homes. While there will always be a need for some kids to receive more intense services during acute situations, Kleeblatt said the key strategy must be early identification and intervention.
“Families want their kids to be successful at home and in the community, and that’s where we need to provide the services,” he said.
But while the need for residential care is rare, members of the mothers’ group say it should be easier to access when needed.
Andrews said her family has seen a change at DCF. When her daughter was hospitalized six years ago, at age 12, her clinicians recommended getting in touch with DCF because there were certain services that were only available through the agency.
“It felt like a partnership,” Andrews said.
They met with a social worker who reviewed their daughter’s case. They ultimately decided she didn’t need voluntary services, but the social worker checked in periodically to ask how they were doing. Eventually, she told the family it seemed like they had all the services they needed in place, and asked how they would feel about closing the file. Andrews agreed.
Four years later, Andrews’ daughter was spiraling downward, far worse than she’d been before. She was already in a clinical day school, had a private psychiatrist and private therapist, and many community-based services, and her clinicians believed she needed residential treatment.
But DCF wouldn’t open a voluntary services file for her daughter, Andrews said. She said she was told that the agency wouldn’t do so unless it thought there were services that it could offer the family.
“It was completely adversarial,” she said.
Ultimately, Andrews’ family hired an educational consultant to help find an appropriate placement. Some facilities in Connecticut said they didn't think they had the intense therapeutic care Andrews' daughter needed. She ultimately went to a treatment program out of state that, her mother said, “changed her life.”
The mothers recommended that DCF have more flexibility in serving families through voluntary services and begin with the recommendations of a child’s care team, rather than a bias against residential care.
“There clearly has been a change in the overall shape of the system,” Kleeblatt said, noting that the system relies less on group care settings and has built more community-based services.
“There’s still a lot more work to do. We recognize that,” he said. “And we know we need to do that work with families.”