Hellish Lives for Children with Severe Mental Illnesses and Their Families, Landmark National Survey Finds

Posted on July 1, 1999

Chicago, IL - The results of a new national survey of American families who have children with severe mental illnesses reveal that nearly one in five of the parents surveyed were forced to give up their children because they couldn't afford to pay for much-needed treatments and services.

Released at the annual convention of the National Alliance for Mentally Ill (NAMI), the report also found that more than one-third of survey respondents (36 percent) said their children were in the juvenile justice system because mental health services were unavailable. Even when their children received psychiatric treatment, they were treated inappropriately or abusively. Twenty-two percent of the families reported that their children were subjected to physical restraint or seclusion, and 13 percent to 15 percent were physically or sexually abused.

Conducted for NAMI by the Commonwealth Institute for Child and Family Studies at Virginia Commonwealth University, Families on the Brink: The Impact of Ignoring Children With Serious Mental Illness documents a shameful pattern of neglect and complacency, with families barely surviving under the strain of early-onset mental illness.

"These findings paint a dire picture," said NAMI Executive Director Laurie Flynn. "Families struggle on the brink of disaster, facing unimaginable, but very real risks of family dissolution, financial bankruptcy, wrongful imprisonment, or giving up custody of children just to get them treatment."

An estimated 7.5 million children (12 percent of all children under age 18) have mental disorders, nearly half of which lead to serious disability. Suicide is the third-leading cause of death among young people between the ages of 15 and 19 years, a rate that has tripled since 1960. "While national awareness of the pressures our kids face today has been raised in the wake of recent school violence," said Flynn, "the far greater difficulties children with serious mental illnesses and their families confront each day, every year, are being overlooked. They are trapped inside a system of horrors."

• Fall-out of inaccessible treatment and services. Twenty-three percent of parents responding to the survey reported having been told that they would have to relinquish custody of their children to get needed services; 20 percent said that they did so to get care. Fifty percent of the responding parents agreed or strongly agreed with the statement, "I worry that my child will not get needed treatment and will become physically aggressive or violent." More than one-third of the parents who responded to the survey-36 percent-reported that their children were placed in the juvenile justice system because needed services were not available.
  "Never allow the state to take custody of your child for treatment. We did and it destroyed a marriage, two adults, and a child."
• Health insurance and managed care. Sixty-six percent of responding parents reported a lack of health insurance parity, with nearly half-49 percent-saying inadequate insurance benefits impeded needed care. Nearly half of the respondents, again 49 percent, indicated that managed care organizations limited or denied access to needed treatment for their children to the detriment of their children's health. Most felt that the mental health system does not accommodate youth who need intensive treatment and who have a chronic and serious mental illness.
  "If you have a mild or short-term problem there are plenty of services, but for long-term, serious problems or crises, there's nothing."

Other Major Survey Findings:

• Physical and sexual abuse. Thirteen percent to 15 percent of family respondents said their children were physically or sexually abused during stays in hospitals, residential treatment centers, or jails. Twenty-two percent said that the use of seclusion or restraint on their children in a hospital put their children at physical risk.
• Lack of healthcare provider expertise. Only 34 percent of parents responding to the survey reported that their primary care physicians routinely evaluated mental, emotional, and behavioral issues and development; 56 percent stated that their children's primary care physician did not recognize their serious mental illnesses. Most caregivers felt the professionals involved in the evaluation, treatment, and medication management of their children were misinformed or lacked sufficient training or expertise to understand their children's disorder or treatment needs. Parents perceived that most professionals and services had not kept current with the latest research or treatment information and used outdated theories and approaches, including blaming families for their child's disorder.
  "I took my son to a psychiatrist who said if we, the parents, stopped fighting with each other, my son would be fine. It was our fault."
• School-system experience. Nearly half of the responding parents-46 percent-felt that schools resisted identifying children with serious mental illnesses; 68 percent said that their children had to fail first before appropriate educational or related services were put in place in schools. Only seven percent of respondents said that school professionals are adequately trained and prepared to deal with serious mental illness in children and adolescents.
  "There seems to be a resistance from the schools in identifying these children because they are too costly. They think, 'If you can just ignore them, maybe they'll go away.' Some of these kids aren't even in school."
• Toll on families. Nearly half of survey respondents felt shunned by neighbors and friends because of their children's illnesses-and half said they were blamed for their children's conditions. In more than half the families, 55 percent, one of the parents had to change jobs or quit to become their child's full-time caretaker. Fifty-nine percent said they felt like they were pushed to the breaking point. Seventy percent reported that their marriages had been severely stressed by the experience of caring for a sick child, and in 80 percent of the responding families, siblings were negatively affected.
  "I took a one-year leave of absence - even though it devastated us financially - because there was no other way to manage my son's illness, or the doctors' appointments, or the daily trips to the hospital."

"The report gives voice to tremendous suffering, it is cause for sadness and outrage," said Flynn. "Not only must parents try to comprehend why their child has a brain disorder, but they also find themselves having to fight for medical attention, school system support, and acceptance from neighbors and friends."

NAMI's Call To Action

NAMI calls for a national commitment and comprehensive policy agenda to ensure that children and adolescents with serious mental illnesses receive the treatment and services they desperately need. "As a nation, we must close the gaps in scientific understanding, screening and treatment, and remove unethical barriers to needed care and services," Flynn said.

• NAMI's agenda for children and adolescents includes:
• an end to the requirement that families relinquish custody of their children solely to gain access to needed care;
• an end to health insurance discrimination against serious mental illnesses in children and adults by passage of the Mental Health Equitable Treatment Act, introduced in Congress this year by Senators Domenici (R-NM) and Wellstone ( D-MN);
• national standards so that restraints and seclusion with children are only used for emergency safety situations as authorized by appropriate and highly qualified medically trained personnel;
• training of juvenile justice officials about appropriate screening and treatment of youth with serious mental illnesses who enter this system;
• increased research on the prevalence, nature, and effective treatment of serious mental illness in children and adolescents to better guide clinical care and public policy;
• a campaign to educate health and school professionals about serious mental illness in children and adolescents to improve early detection of these brain disorders and provide proper care and services and supports for children and their families;
• the passage of national requirements to improve access to and quality of care in managed care systems-passage of a managed care patients bill of rights; and
• a national education campaign focused on ending the stigma and discrimination that surrounds serious mental illness in children.

Survey Methodology

Families on the Brink: The Impact of Ignoring Children with Serious Mental Illness is the first national survey to examine family views of the availability of treatments and services, as well as difficulties encountered in caring for children with severe mental illnesses.

From October 1998 through February 1999, researchers received and reviewed mailed or electronic surveys completed by families or primary caregivers from all 50 states, representing the experience of 903 children and teenagers with serious mental illnesses. In May 1998, researchers conducted focus groups with families in Oklahoma City and Tulsa, Oklahoma; in Bethesda, Maryland; and in Portland and Eugene, Oregon.

Families on the Brink was conducted for the National Alliance for the Mentally Ill (NAMI) by the Commonwealth Institute for Child and Family Studies, Department of Psychiatry, Virginia Commonwealth University. The report's authors are principal investigator Stephanie Vitanza, Ph.D.; principal co-investigator Robert Cohen, Ph.D.; and principal co-investigator Laura Lee Hall, Ph.D., NAMI's director of research.