NAMI Survey Details Problems Faced by Parents of Children and Adolescents With Severe Mental Disorders
Seventeen percent of parents of children with severe mental illness who responded to a survey commissioned by the National Alliance for the Mentally Ill (NAMI) reported that they were forced to give up their child because they could not pay for treatment and services. Thirty-six percent said their child had been placed in the juvenile justice system because mental health services were unavailable.
The majority of respondents to the survey reported barriers to treatment caused by lack of parity in health insurance coverage for mental disorders, and half noted barriers to care created by managed care plans. But an overwhelming majority of respondents whose children received treatment and services considered them valuable.
The results of the survey, released in July, are summarized in a report entitled Families on the Brink: The Impact of Ignoring Children With Serious Mental Illness. Conducted for NAMI by the Commonwealth Institute for Child and Family Studies at Virginia Commonwealth University in Richmond, the survey examined family views of the availability of treatment and services as well as the difficulties encountered when caring for a child with mental illness.
The issues covered by the survey were identified in focus groups of family members with mentally ill children up to age 21. The focus groups, organized by NAMI state and local coordinators, were conducted in May 1998. The following November, 3,093 questionnaires were mailed to individuals and organizations on a NAMI mailing list who had previously expressed interest in issues related to children and adolescents with a serious mental illness. The survey questionnaire was also posted on the NAMI Web site. A total of 903 responses were received, 147 of which related to children over age 21, reducing the sample to 756. The overall response rate was approximately 25 percent.
Almost 76 percent of the survey respondents were mothers of mentally ill children; their mean age was 43 years. Eighty-eight percent of respondents were Caucasian, 5 percent were African American, and 2.5 percent were Hispanic. Thirty-five percent had some college or trade school education or above, and 24 percent had a graduate or professional degree. Forty-eight percent of respondents were employed full time, and 22 percent were employed part time. Fifty-six percent had an annual family income of $40,000 or more, and 22 percent had an annual income of $75,000 or more.
Respondents came from all 50 states. Sixty-nine percent reported that they had private health care coverage provided by an employer. Thirty-seven percent had Medicaid coverage for their children, and 4 percent had no health care coverage. Sixty-seven percent of all respondents with health care coverage were enrolled in managed care programs.
Seventy percent of the respondents had only one child diagnosed with a serious mental illness; the remaining 30 percent had two or more. Eighty-five percent of the children were living at home. Sixty-seven percent were male; the mean age of both males and females was 13 years, and their mean grade level in school was the eighth. Seventy percent of the children were receiving special education services from their schools. All 15 special education classifications were represented, but the four most commonly reported were emotional disturbance (55 percent), developmental delay (12 percent), other health impairment (16 percent), and specific learning disability (27 percent). Thirty-seven percent of the children had two or more special education classifications.
Caregivers reported that their child with serious mental illness had exhibited many disturbing or maladaptive behaviors within the past 12 months. Most commonly reported were mood swings (83 percent), violence or physical aggression (65 percent), hyperactivity (64 percent), withdrawal from family or friends (46 percent), and suicidal thoughts (45 percent). Attention disorders, bipolar disorder, and obsessive-compulsive disorder were among the most commonly reported diagnoses. And although childhood schizophrenia is very rare, about 2 percent of respondents said that their child had received that diagnosis.
Fifty-three percent of the children were currently receiving medication, most frequently mood stabilizers, impulse-control medications, and antidepressants. Fifty-six percent of the children had received individual therapy, and 42 percent had been treated in an acute care inpatient unit. Eleven percent currently were in a residential center, and 23 percent had previously received residential treatment. Thirty-eight percent of the respondents reported that they were involved in family therapy and 20 percent in group therapy, and 25 percent reported that their child had received early intervention services. Nearly 25 percent of the children received in-home services.
The majority of respondents valued the treatments their children received. Approval rates were 91 percent for individual therapy, 90 percent for family therapy, 85 percent for medication, 82 percent for inpatient treatment, 76 percent for group therapy, 75 percent for early intervention services, and 67 percent for in-home services.
Barriers to receiving necessary care were reported by most respondents. Sixty-six percent said their health insurance failed to provide parity coverage for mental illness, and 49 percent said this lack prevented their child from receiving needed care. Forty-nine percent of the respondents identified managed care as a significant barrier to needed treatment for everything but medication.
Fifty-six percent of respondents reported that their children's primary care physician did not recognize their serious mental illnesses, and 26 percent said the physician referred them to mental health professionals only after repeated visits or phone calls.
The report concludes with a number of recommendations for improving services to children and adolescents. Among them are research to identify more effective treatments, education of primary care and mental health providers, parity coverage for mental disorders, and improved quality in managed care plans. The last would include a federal mandate that children diagnosed with a serious brain disorder receive a standing referral to a child and adolescent psychiatrist and that these psychiatrists be allowed to serve as primary care coordinators for the children.
The report is available on the Web at http://www.nami.org/youth/brink.
CSAT Releases Guide for Developing Substance Abuse Treatment Services for Women in U.S. Jails and Prisons
The Center for Substance Abuse Treatment (CSAT) has released a guide to help states and communities create treatment programs for women offenders. The guide, Substance Abuse Treatment for Women Offenders, showcases knowledge gained in the past five years from CSAT-funded demonstration programs in prisons and jails in nine U.S. cities.
Since 1985 the number of women incarcerated in U.S. prisons and jails has grown by 10 percent each year, the guide notes, largely driven by convictions for drug-related offenses. Currently about 78,000 women are prison inmates, and 59,000 are in jails. Up to 80 percent of women in some state correctional systems have severe long-standing substance abuse problems, according to the guide. The typical woman offender incarcerated for a drug-related offense is 30 years old and a single head of household with minor dependent children. She has failed to complete high school and is likely to have grown up in a home with an alcohol- or drug-abusing adult. According to the guide, she has likely used cocaine or heroin daily, generally in conjunction with alcohol, and has been addicted for nine years. She spends approximately $1,000 a week to support her habit.
Without treatment, many of these women cannot meet the terms of their probation and are reincarcerated in a revolving-door pattern at great cost both to the women and their families and to society. Costs of incarceration are between $20,000 and $30,000 a year per inmate, according to the guide. Foster care for children of incarcerated women can add up to $14,000 a year per child. Treatment in a therapeutic community, the most intensive form of in-custody treatment, costs about $3,200 a year. Residential drug treatment in the community costs between $17,000 and $20,000 a year.
Four of the CSAT-funded demonstration programs highlighted in the guide are in prisons and five are in jails. Most are residential therapeutic communities, intensive rehabilitation and resocialization programs in which women stay from three to 24 months. One is a less intensive six-month program in which women prison inmates receive four hours of treatment daily and are encouraged to enter community residential treatment after release. Two are short-term intensive jail programs designed to motivate women to enter community treatment after release. The guide describes features shared by the programs, such as a strong focus on the assessment process and the importance of continuing care.
The nine CSAT-funded programs use treatment approaches specifically developed for women, and the guide describes several assumptions on which the approaches are based. Women offenders report high rates of physical, sexual, and emotional abuse. During the early period of recovery, the CSAT-supported programs address disempowerment and disconnection from others, which the guide describes as the core experiences of psychological trauma resulting from physical and sexual abuse. Several of the programs use the relational model, originated by the Stone Center in Wellesley, Massachusetts. The model recognizes the importance of relationships in women's emotional development, and programs based on the model focus on providing addicted women with a treatment setting where they can experience healthy relationships with their counselors and each other and achieve success in fulfilling valued social roles, such as caring for children.
The guide provides recommendations for dealing with many clinical issues encountered in the treatment of women offenders with severe substance abuse problems. They include racism, gender discrimination and harassment, interpersonal violence, attachments to unhealthy relationships, coexisting psychiatric disorders, sexuality, parenting and child custody, appearance and overall health and hygiene, and isolation related to a lack of social support systems. Critical issues in implementing treatment programs for women offenders, such as gaining support from prison and jail administrators, are also described.
Substance Abuse Treatment for Women Offenders is number 23 in the CSAT Technical Assistance Publication series. It can be ordered free of charge from the National Clearinghouse for Alcohol and Drug Information, at 800-729-6686.
Performance Measures in Behavioral Organizations Focus of NAPHS Survey
A survey of members of the National Association of Psychiatric Health Systems (NAPHS) and its partner, the Association of Behavioral Group Practices (ABGP), documents for the first time the measures widely used by behavioral health care organizations to assess their performance.
A report of the survey calls the initiative "an important first step" toward identifying areas in which a strong data collection process is under way and in which there is some consistency of definitions, making further study possible.
The survey instrument was developed under the guidance of a 13-member benchmarking committee chaired by Peter Panzarino, M.D., of Cedars Sinai Medical Center in Los Angeles. Through discussion and an extensive literature review, the committee identified measures currently being used to track performance in behavioral health care organizations. A survey form subsequently was sent in September 1998 to 297 chief executive officers of organizational members of NAPHS and ABGP asking if the measures were used in their programs.
A total of 127 surveys were returned, for a response rate of 43 percent. The overwhelming majority of responses, 105, were received from specialty inpatient and psychiatric units in medical hospitals. Nine responses were received from freestanding residential facilities, ten from behavioral group practices, and three from other facilities.
Eighty-seven percent of the respondents provided inpatient services, 86 percent partial hospital services, 72 percent outpatient services, and 50 percent residential services.
The performance measurement activities were grouped into five categories: clinical performance, peer review, coordination of care, perception of care, and child-adolescent. The survey found that measures of clinical performance and perception of care were among the most widely used measures across treatment settings. The survey also found a general consistency in definitions on most measures, a finding that may help facilitate future comparison of data across systems.
The survey indicated that a higher percentage of inpatient services were using performance measures compared with other types of settings. Nine performance measures were used by 80 percent or more of the inpatient services, while only three measures were used by 80 percent or more of the residential treatment services and only two by 80 percent or more of the partial hospital services. No measure was used by 80 percent or more of the outpatient services.
The most common measure used in both inpatient services and residential treatment services was tracking adverse drug reactions, reported by 96 percent of inpatient services and 86 percent of residential treatment services. Sixty-six percent of partial hospital programs and 39 percent of outpatient programs reported using that measure.
In partial hospital programs, the most common performance measure, reported by 83 percent, was having a policy to document medication use in the patient's chart. That performance measure was used by 95 percent of inpatient units, 85 percent of residential treatment programs, and 65 percent of outpatient programs. In outpatient programs, the most common performance measure was tracking completed suicide, reported by 70 percent, compared with 88 percent of the inpatient programs, 82 percent of the residential treatment programs, and 81 percent of the partial hospital programs.
For more information about the report, contact the National Association of Psychiatric Health Systems, 1317 F Street, N.W., Suite 301, Washington, D.C. 20004; phone, 202-393-6700; e-mail, [email protected].
NEWS BRIEFS
Violations of confidentiality: The National Mental Health Association (NMHA) has issued a report focusing on managed care practices that threaten the privacy of mental health consumers. Among the worst practices identified in the report are requiring access to the full medical report and psychotherapy session notes, failing to provide up-front information about confidentiality protocols, and failing to include a statement in release forms about the consumer's right to withdraw consent. The report, Best (& Worst) Practices in Private-Sector Managed Mental Healthcare Part II: Confidentiality, is available for $5 by calling 800-969-NMHA or visiting its Web site at www.nmha.org.
Applications sought for APA research awards: The American Psychiatric Association is seeking applications for research awards for beginning investigators and senior researchers to be presented during the APA annual meeting May 14-18, 2000, in Chicago. Among the awards are the APA/Kempf Fund Award for Research Development in Psychobiological Psychiatry, the APA/Smith Kline Beecham Young Faculty Awards for Research Development in Biological Psychiatry, the APA/Wyeth-Ayerst Psychiatric Research Fellowship, and the APA Early Career and Senior Scholar Health Services Research Awards. For deadlines and application information, contact the Office of Research, APA, 1400 K Street, N.W., Washington, D.C. 20005; phone, 202-682-6225; fax 202-789-1874.
Funds for drug abuse prevention: Washington, D.C., has joined 21 states in participating in a new incentive grant program designed to implement community-based programs that work to reduce alcohol, tobacco, and illicit drug use by youth. Titled State Incentive Grants for Community-Based Action, the new grants are awarded by the Center for Substance Abuse Prevention of the Substance Abuse and Mental Health Services Administration to help states retool their substance abuse prevention activities to measurably reduce youth drug use. The D.C. grant will total $6 million over three years. The program provides a $100,000 grant to a community-based organization in each of the district's eight wards and 12 additional $75,000 grants to community-based organizations throughout the district.
