Critical Issues for Parents with Mental Illness and their Families

Executive Summary

I. Introduction
This report integrates the available knowledge regarding parents with mental illness and their families. The impact of mental illness on parenting and family life varies with the age at onset, severity and duration of the illness, and the nature of any consequent impairment in parental functioning, as well as with the strengths and resources of parents and family members. Ignorance and misinformation about mental illness, pregnancy and parenting, and the ways services are organized and policies are implemented compromise outcomes for children and adults. Innovative and promising programs are being developed to enhance outcomes for both children and parents.

II. The Scope of the Issue
There are no national data on the frequency with which adults with mental illness bear and care for children. Information on prevalence is drawn from existing data sets and is, therefore, limited by study rationale and methods. For example, large-scale descriptive data are not available on the characteristics of children whose parents have mental illness, such as where they are living, or in whose custody or care. Data available from the National Comorbidity Survey (NCS) indicate that:

Almost one-third of American women and one-fifth of American men provide evidence of psychiatric disorder in the past 12 months. Sixty-five percent of these women are mothers; 52% are fathers.
Women and men with mental illness are at least as likely, if not more likely, than those without psychiatric disorder to become parents.
The majority of adults falling into the diagnostic categories captured by the NCS (affective disorders, anxiety disorders, PTSD, and psychotic disorders) are parents.

III. The Experiences of Parents with Mental Illness
Most of what we have learned in the past decade in the U.S. about the experiences of parents with mental illness is based on research with small samples of mothers in the public sector with severe mental illness and multiple stressors such as poverty and ethnic minority status. We know very little about the experiences of parents whose diagnoses fall across the full spectrum of psychiatric disorders or who are Caucasian and middle class. While the experiences of parents with mental illness are similar to those of all parents in many ways, the literature has emphasized their unique circumstances and, most commonly, their deficits and failures.

The percent of unplanned pregnancies among women with serious mental illness is high.
Mothers with schizophrenia have higher rates of reproductive loss, e.g., miscarriages, stillbirths, and induced abortions.
Parents with mental illness may be quite vulnerable to losing custody of their children, with studies reporting rates as high as 70% to 80%.
Adults with mental illness have a high likelihood of past or present victimization; symptoms associated with trauma survivorship may interfere with successful parenting.
Parents with mental illness often feel responsible or blamed for their children's difficulties, which are more prevalent than in children whose parents are well.
Parents with mental illness are more likely to be living without partners.
Patterns of care giving and social support vary among ethnic and racial groups; family members may be viewed as a resource or as a source of stress.

IV. Service Needs and Barriers
Parents and their service providers identify needs generic to all parents, as well as needs specific to their illnesses. We know very little about parents receiving services in the private sector.

Generic needs include housing, transportation, employment, recreational activities, child care, health care, and respite from the 24-hour-a-day challenges of parenting.
Illness-related needs include the financial and emotional resources necessary to manage symptoms, obtain services, implement treatment regimes, and maintain relationships with helping professionals.
The stigma accompanying mental illness is a pervasive factor affecting parents' access to and participation in services.
Services tend to be problem-focused and deficit-based rather than preventive or strength-based.
Funding streams and program eligibility requirements may limit participation to eligible adults or children, but not both.
Services are not integrated or coordinated across or within systems.

V. Child Outcomes: Having a Parent with Mental Illness
Two decades of research indicate that children who have a parent with mental illness are at significantly greater risk for multiple psychosocial problems. Despite these risks, many children are resilient and appear to avoid significant problems. Studies have focused primarily on elaborating sources of risk, rather than identifying sources of resilience. Mental illness in parents interacts with, or is associated with many variables and processes than can enhance resilience or confer risk upon children. No attention has been paid to children's subjective experiences or reports of what is useful to them in coping with their families' circumstances. Interventions have not been widely informed by new knowledge of the contribution of moderators to enhanced child outcomes.

Rates of child psychiatric diagnosis among offspring range from 30% to 50%, compared with an estimated rate of 20% among the general child population.
Children may show developmental delays, lower academic competence, and difficulty with social relationships.
Mediators or mechanisms relating parental mental illness to child outcomes include genetic influences, biological influences, illness characteristics, and environmental influences such as characteristics of parenting, marital relationships and family functioning.
Moderators that can enhance or worsen child outcomes include spouse or partner characteristics, environmental stressors such as poverty, child characteristics, and therapeutic interventions.

It is important to note that our knowledge of child outcomes is limited by a preponderance of research that focuses on affective disorder in Caucasian, middle-class families. Consequently, our understanding of cultural and ethnic differences in the relationship between parental mental illness and child outcomes is limited.

VI. Policies and Practices
A number of policies and practices have potential ramifications for parents with mental illness and their families.

The Adoption and Safe Families Act (ASFA), intended to promote safety and permanency for children, imposes timelines that may be difficult for parents with mental illness to meet given the often uneven course of illness and recovery, the time needed for comprehensive family evaluation and treatment, and the lack of relevant services.
The American with Disabilities Act (ADA) has provided little direct protection to parents with mental illness; no state has successfully called on the ADA to challenge parental rights terminations.
Without appropriate family and work supports to overcome barriers to employment, parents with mental illness, especially single mothers, may be unable to comply with the Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA/TANF) regulations, resulting in the loss of benefits to families and children in greatest need.
Managed care organizations, including those managing public sector mental health benefits, may overlook the unique needs of their adult subscribers with mental illness who are parents in their standardized treatment authorization and utilization review processes, jeopardizing outcomes for parents and children.
Results of a national survey of state mental health agencies indicate that attention to the needs of public sector clients as parents has become increasingly limited over the past decade. SMHAs that are unresponsive to the needs of adult clients who are parents and their children miss a prime opportunity to work towards recovery and wellness for families in the public sector.

VII. What We Can Learn From Other Systems and Fields

While the prevalence of certain types of mental illness in samples of known child abusers is higher than in the general population, these data do not tell us about the prevalence of child abuse or neglect in the families of parents with mental illness.
While children in families in which parents have mental illness are likely to be at developmental risk, Early Intervention or Head Start efforts have not systematically assessed or focused upon the needs of this possibly substantial subgroup of children and families.
While there is most likely considerable overlap between the population of parents with substance abuse issues and those with mental illness, the knowledge gained in shifting substance abuse treatment paradigms from an individual client to a mother-child focus has not been widely applied in the mental health treatment arena.
The high prevalence of violent victimization and trauma among women with mental illness is likely to have ramifications for those among them who are mothers. These issues are frequently not addressed in mental health assessment or treatment.
Women living with serious mental illness are at increased risk for HIV infection, contributing to a complex set of challenges and comprehensive service needs for those who are mothers, and their children.
Incarcerated women have higher rates of psychiatric disorders than the general population, and three out of every four incarcerated women have children.
While psychiatric rehabilitation strategies have been shown to be effective in enhancing role participation among adults with mental illness, the parenting role has largely been ignored.
In many states, the diagnosis of mental illness justifies the removal of children from their parents' care and the termination of parental rights. The legal determination of "parental competence" or the impact of a particular parent's mental illness on his or her capacity to parent is complicated by the lack of an accepted definition, the irrelevance of traditional psychological instruments, situational influences, and the lack of normative data.

VIII. Programs for Parents with Mental Illness and their Families
Innovative and promising programs have been developed in the U.S. and other countries over the last 20 years, though they are small in number. In areas where there are no programs designed specifically to serve parents with mental illness, providers and families may piece together a patchwork of services.

Programs develop from the recognition that traditional services do not address the needs of parents with mental illness and their families.
Providers share a belief in the capacity of adults with mental illness to be parents.
The needs of families are complex and require coordination of multiple services.
Programs share goals of (1) addressing basic needs; (2) improving parents' coping and problem-solving skills; (3) improving parenting skills specifically; and (4) enhancing child development.
Programs are extremely diverse in services and interventions provided, and can be distinguished along two dimensions, comprehensiveness and family-centeredness.
Targeted program outcomes differ.
Programs have limited resources for evaluation.

IX. Steps for Stakeholders: A Consumer-Researcher's Perspective

Identify adults with mental illness as parents.
Recognize the strengths of parents with mental illness.
Battle the stigma of mental illness.
Attend to the termination of parental rights process, custody concerns and visitation issues for parents with mental illness and their children.
Provide supports for children whose parents are living with mental illness.
Educate professionals regarding the challenges and needs of parents with mental illness and their families.
Provide peer supports for parents.
Prioritize parenting as a policy issue.
Coordinate services for parents.

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