When Parents Need Treatment: Supports Scarce for mothers with mental illness

What support can a mother with mental illness count on if she wants to be a better parent? The short answer: Not much. Nationwide, there is little coordination or communication between the mental health system--geared to treat adults--and the child welfare systems that are designed to protect children. Mental health workers may not even ask a patient if she has children, while child welfare workers typically have little training in how to deal with mental illness. Perhaps most important, parents with mental illness are often reluctant to acknowledge they need help--for fear their children might be removed if they do. Advocates for the mentally ill say prejudice against parents with mental illnesses is based on a misunderstanding of mental illness and generalized assumptions about its debilitating effects. For instance, schizophrenia is a chronic disease that can cause sufferers to hear voices in their head and can be difficult to control. Maternal depression, on the other hand, may be episodic and is usually easier to treat.

Mood and anxiety disorders are the two most common mental illnesses. "Depression is considered the common cold of mental illness," says Edie Mannion, co-founder of the Training and Education Center of the Mental Health Association of Southern Pennsylvania. Depression can make parents irritable, withdrawn, unavailable and inattentive. When it hits, some people have difficulty getting out of bed and managing the most basic parental responsibilities such as feeding and cleaning their children. "It affects whether the child feels loved and cared for," says Mannion. Mannion, who is also a family therapist, teaches a one-day course to child welfare caseworkers in Philadelphia with an overview of the symptoms and treatments of major mental illnesses. Mannion says parents have confided to her that the service they most need is some kind of respite emergency childcare that they can tap into when they're getting sick. Parents can be afraid to ask child protection services for such help because it can open the door to scrutiny, which might result in losing their kids.

How much help a mother gets depends in part on how much money she has--and whether she has private health insurance. "If you have money, you can check yourself into a hospital if you have post-partum depression," says Sharman Stein, spokeswoman for the city's Administration for Children's Services (ACS). "But for poor women, what's going to happen?" Years ago, women with mental illness were often sterilized to prevent them from having children. While involuntary sterilization no longer exists, some children are taken at birth from mothers whose psychosis seems to prevent them from being an effective parent. Older children may also be placed in foster care.

Few believe foster care is a long-term solution for children, and adoption can take years. Social service agencies routinely try to determine if families can be kept together safely. Putting children in foster care doesn't help the parent get better, says Jan McCarthy, former director of Child Welfare Policy at Georgetown University's National Technical Assistance Center for Children's Mental Health. "And the move itself creates all kinds of trauma for the kids. You lose your family, your home, your school, your friends," she says.

"We know significant numbers of parents with children in the child welfare system have mental health needs," adds McCarthy, co-author of a 2004 national report on the state of mental health for the U.S. Department of Health and Human Services. Nevertheless, she says, she knows of no state that requires its child welfare workers to receive training in how to identify and communicate with parents with mental illness.

Child welfare agencies in some cities and states are beginning to conduct more comprehensive family assessments, McCarthy says. "One thing the child welfare system is trying to do is individualize services for families," she says, describing how agencies are cobbling together peer advocates and teams comprised of family members and community members to help parents with mental illnesses develop an appropriate service plan for their family and better navigate the child welfare system.

A new study by the National Technical Assistance Center outlines some of the ways states are beginning to fund behavioral health services for parents and children. Arkansas, for instance, has begun providing parents who are ineligible for Medicaid with intensive family services, psychiatric evaluations and counseling. In Arizona, Medicaid is now being used to pay for "family education and peer support, respite, behavioral management skills training and other supports to families if these supports are geared toward improving outcomes for the identified child."

Parents with mental illness are entitled to the same preventive family support services that any parent involved with the child welfare system may receive, including parenting classes, drug treatment, therapy, and help with housekeeping. In New York City, a small number of parents with chronic and serious mental illness who come in contact with the foster care system eventually move to supported housing programs where they can raise their children with supervision.

Child welfare workers note that the need for these programs far exceeds what's available. A handful of city-funded community-based family service agencies have clinicians who can offer therapy sessions in the homes of parents who are not stable enough or are unable to attend weekly therapy sessions at a clinic. Some of these agencies also have clinical consultants who advise family support workers on the nuances of the mental health issues facing the families they work with. These clinicians train and consult with child welfare workers and sometimes accompany them on home visits or family conferences. The use of these consultants has recently increased significantly, says Marilyn Johnson, director of preventive services at Jewish Board of Family and Children's Services. Her agency also provides clinical consultants based in ACS child protective field offices, where they offer advice to child abuse and neglect investigators.

But advocates for the mentally ill say that to make use of services like these, child welfare workers need a basic understanding of mental illness. Child welfare workers may not recognize or understand a parent's psychiatric disability. For example, a caseworker may assume a mother is being neglectful for not providing her child breakfast, not realizing that she's taking medications that make her especially groggy in the morning, says Chip Wilder, director of Family Options, a program based in Marlborough, Massachusetts, one of the few in the nation that offers intensive services to parents with major mental illnesses and their children. "Our argument is, you have to have an understanding of mental illness and treatment if you're going to help a patient," he says.

Family Options is affiliated with the Center for Mental Health Services Research, part of the psychiatry department of the University of Massachusetts Medical School and one of the few organizations that compiles research and treatment information on parents with mental illness. Wilder says that approximately 70 percent of the referrals to Family Options come through the child welfare system after caseworkers have determined that the usual family supports are insufficient. "We try to partner with child welfare workers and talk about what's going on," says Wilder. "And we try to help the parent engage in the child welfare plan," explaining that its main goals for the family are safety and well being, and permanency for the children.

The staff includes three family coaches, a parent peer coordinator, and a consulting research and clinical psychologist. They begin the process by developing a trusting relationship with the parents. "We don't say, 'What are your problems?'" explains Wilder. "We say, 'What are your needs and those of your children?'" Wilder says the parents are asked to make a prioritized list of their needs, which is turned into an intervention plan. It might involve helping them secure jobs or housing, improving their relationships with their children's schools, or getting them a stove.

"A lot of their problems are with organization. Their houses are messy, dirty, disorganized," says Wilder. "They'll say, "I need help organizing my house.' We tackle that. When you start tackling things that they say are priorities and you don't blame them, you start to build a trusting relationship."

These interventions, which usually last 12 to 18 months, are funded by grants and cost anywhere from $15,000 to $17,000 a year per family. In the 2 1/2 years since the program began, they've helped about 30 families. Although parents often need more time, Wilder says they've seen improvement at each stage of the process. "People can get better. People can recover," he says, describing how they've been able to engage parents who haven't successfully engaged in any other child and family support services. "That's the piece we do really well--engage the parent."