Critical Issues for Parents with Mental Illness and their Families

Chapter IX

Summary of Critical Issues and Recommendations

The following is a summary of the critical issues for parents with mental illness and their families organized by the original questions posed for this project. Recommendations follow.

The Critical Issues

Question: Who are parents with mental illness and their families?
- There are no comprehensive data regarding the parenting status of adults with mental illness and the family status of their children. However, preliminary analyses of National Comorbidity Survey data suggest that the majority of adults with a lifetime prevalence of mental illness are parents, and that adults with mental illness are at least as likely, if not more likely to be parents than those without mental illness.
- Without an understanding of the scope of the problem, services fully supportive of parents with mental illness and their families cannot be developed, and the implications of policies and practices cannot be fully determined. On a case by case basis, key informants report that federal and state policies and practices, and the lack of relevant services have profound negative effects on families living with mental illness.
Question: What do we know about the experiences of adults with mental illness who are parents? What are their needs? What are the barriers to meeting their needs?
- 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 other 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 white, middle class, and receive private sector services.
- We know virtually nothing about the characteristics or experiences of fathers with mental illness.
- The challenges of parents with mental illness have a great deal in common with those faced by all parents, though the literature has emphasized the unique circumstances of these parents and, most commonly, their deficits and failures.
- Stigma is a significant barrier to service utilization, as are aspects of the organization, administration, and funding of services, and the lack of integration or coordination of services across and within systems.
Question: What is the impact on children of having a parent with mental illness?
- Two decades of research have unequivocally indicated that children who have a parent with mental illness are at significantly greater risk for multiple psychosocial problems. Despite these risks, many children of parents will mental illness are resilient and appear to avoid significant problems
- Research has uncovered multiple sources of risk and resilience for children of parents with mental illness, although the focus in research has been on risk and negative outcomes, and not as often on sources of resilience and strengths. Most of the studies of resilience focus on children at risk of poor development due to environmental risk factors.
- 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.
Question: How do federal, state and local policies and practices impact these families?
- Aspects of the Adoption and Safe Families Act of 1997, i.e., the time frames and dearth of appropriate services, may mitigate against maintaining or reunifying families in which parents have mental illness.
- To date, the Americans with Disabilities Act has afforded little protection to parents with mental illness, particularly in termination of parental rights proceedings.
- Without appropriate family and work supports to overcome barriers to employment, parents with mental illness, especially single mothers, may be unable to comply with 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.
- 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, and may actually contribute to poor outcomes for both the adults and the children they serve. Fewer SMHAs today identify the parenting status of clients than did in 1990.
Question: What can we learn from other service systems and fields to inform our research, policies and practice?
- While parents with mental illness are found in studies of child welfare populations, and assumptions may be made by providers that parents with mental illness may possibly abuse or neglect their children, we do not know the prevalence of child abuse or neglect in families where parents have mental illness. Neither do we know much about the mental health needs of parents in the child welfare system. This lack of knowledge regarding the overlap of parental mental illness and child welfare involvement has significant implications for families affected by child welfare policy and practice, e.g., the Adoption and Safe Families Act. Equally critical are the likely effects of this lack of knowledge on families living with mental illness entering the legal system through the child welfare door.
- 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. Opportunities for training and supporting these parents, and preventing and remediating their children's emotional difficulties and developmental delays may be overlooked.
- 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 impact of early traumatic experiences on the functioning of adults with mental illness as parents is unstudied and, frequently, not addressed in mental health assessment or treatment.
- Research, policy, and program initiatives have traditionally ignored the multiple needs of HIV-infected mothers with mental illness and their children.
- The majority of women in jails and prisons in the U.S. are mothers, many of whom have mental health issues. Motherhood and mental illness are neglected in the criminal justice system, though new programs for parents and children are emerging. While the experiences of parents and outcomes for children in families disrupted by parental incarceration, psychiatric hospitalization, or the removal of children by child protection agencies may be similar, there has been little transfer of knowledge among criminal justice, mental health, and child welfare systems about these issues.
- Parenting is a primary and critical life role for many women and men with mental illness that has not been acknowledged fully within the milieu of psychosocial rehabilitation (PSR). Consequently adults with mental illness have not benefited widely from PSR approaches that could be targeted to enhancing their functioning as parents.
- Because of the stigma attached to mental illness, general ignorance of the true impact of mental illness on day-to-day parental functioning, and the lack of appropriate evaluation methods, assumptions and decisions are made about parents with mental illness in the legal system that may not be based in fact or supported by science.
Question: Are there effective program models to enhance outcomes for parents with mental illness and their children?
- Despite innovative and promising efforts, there are few programs for parents with mental illness and their children, relative to the need, that are driven by theory and research, have stable funding, and are well-evaluated.

Recommendations

Systems. National prevalence data must be obtained on the parenting status of adults with mental illness and the family status of their children, i.e., custody, residential status, caregiving arrangements. The issue is not simply whether or a not a person with mental illness is a parent. Comprehensive questions must be asked regarding household composition, custody status, and care arrangements. The full range of characteristics and experience of parents and children must be described, including those of fathers, families in the private sector, and of individuals with various psychiatric diagnoses. A flexible definition of family must be built into research to reflect the possible diversity of formal and informal care giving arrangements for children, particularly given probable socioeconomic, and racial/ethnic differences in family networks and patterns of care giving. Previously collected, large data sets, like the National Comorbidity Survey (NCS) or the National Health Interview Survey (NHIS), could be analyzed using available items related to mental illness, parenting status, and family and risk characteristics to begin to address research questions. On-going national data collection efforts, like the NCS and the NHIS, must be reviewed and modified to include questions that capture this information. New data collection efforts must be supported.

The experiences of children whose parents have mental illness must be explored, and opportunities for subjective reporting provided to children of different ages and developmental stages to obtain information on children's experiences in the current treatment, rehabilitation and advocacy climate. Much of our knowledge of children's experiences comes from individuals who are currently adults, who grew up in times of less effective treatment and lengthy hospitalizations. Our recent knowledge of outcomes for children is based largely on studies of white, middle-class families, with mothers diagnosed with depression. Research must reflect the diversity of American families, psychiatric disorders, and contemporary treatment and rehabilitation approaches, and capture strengths and sources of resilience as well as deficits and factors contributing to negative outcomes for children and parents.

Research must be conducted on the prevalence of child abuse and neglect among families in which parents have mental illness. Factors contributing to parents' success and reducing risk to children must be identified. The impact of childhood trauma and current violence on parents' functioning and their relationships with their children must be explored. The costs and benefits of family disruption, emotional and financial, must be documented to be factored into policy and practice decision-making. Services, and training and advocacy initiatives must be informed by research to adequately meet the needs of these vulnerable families, the range of whose circumstances seems to be poorly understood.

Existing practices must be reviewed to consider more fully their impact on parents with mental illness and their families, and modified to take their varying characteristics and circumstances into account. The organization, administration and funding of mental health services must support the system's capacity to respond to family need whether the "identified client" is the adult or the child, and encourage a "family wrap-around" approach. Client eligibility requirements must be reviewed, and barriers to services to support full family functioning must be identified and overcome. SMHAs must take the lead in identifying clients as parents, considering the needs of families, and providing services to all family members living with serious mental illness.

There is much to be learned from other systems and fields, which potentially can be applied to mental health services and programs for parents and their families. Given the complex needs of these families, knowledge dissemination across systems is essential. For example, knowledge learned in the implementation and evaluation of child welfare family preservation models, Head Start, programs for incarcerated parents, substance abuse treatment initiatives, and efforts through the public health arena to support families with HIV/AIDS can inform the development of services and programs originating in the mental health arena.

Likewise, efforts in other systems and areas of practice must be informed by knowledge developed in the mental health arena regarding the circumstances and needs of families living with mental illness, and effective treatment and rehabilitation strategies for individuals with mental illness or serious emotional disturbance. Given the likely overlap in service populations among public sector systems of care and current gaps in services, efforts must be made to integrate and coordinate existing services and to develop innovative approaches to address the multiple vulnerabilities of these families. For example, families in which parents are living with mental illness may approach services through the primary care door. Parents may prioritize their children's needs, and bring children for well visits and acute care. Primary care physicians have the opportunity, if they are informed and have the appropriate tools and resources available, to intervene in the context of a non-stigmatizing, "normalizing" environment, engaging parents doing something "right," i.e., seeking appropriate health care for their children. Policy or program initiatives that fail to take whole families into account are doomed to be less effective and, most likely, more costly, as systems and services are set against each other, through duplicated, fragmented or simply inaccessible services, and conflicting mandates, incentives and treatment goals.

The needs of these families must be acknowledged and addressed in additional arenas where parents are likely to bring children for services, as well as in the private sector. Prevention and family strengthening approaches could be extremely successful in supporting families with young children, who are likely to access services routinely and earlier through venues other than mental health, e.g., primary care or preschool programs.

Services. Standardized service plans and treatment protocols must be studied and revised to overcome system-induced barriers to service utilization and treatment effectiveness. Review and modification of inter-agency agreements and vendor contracts would permit the inclusion of language and expectations for integrated, family-centered, strengths-based care for parents with mental illness and their children.

Existing programs must be described and evaluated. Several well-developed programs, specifically targeted to parents with mental illness and their families, could serve as models for replication. However, these programs require technical assistance and financial support to describe their efforts fully, i.e., document their theories of change and develop logic models, and to evaluate the process of service provision and outcomes for parents and children. Replication of effective models could be supported through existing funding mechanisms, e.g., community action grants. Innovations within mental health, e.g., psychosocial rehabilitation strategies for skills training and resource environment modification, should be applied to the domain of parenting. The development of new intervention strategies must be supported, e.g., efforts to integrate services and meet the mental health needs of families in primary care settings.

These efforts would benefit from coordinated federal initiatives, drawing on established links and creating new connections among agencies such as the SAMHSA Centers, the National Institute on Disability and Rehabilitation Research, the Office of Special Education and Rehabilitation, the Office of Criminal Justice, Maternal and Child Health, etc. Current federal initiatives, e.g., SAMHSA multi-site studies, could be supplemented to support investigation of factors contributing to resilience as well as risk, and the impact of interventions on all family members, adults and children.

Training and Advocacy. The significance of stigma as a barrier to the successful functioning of families living with mental illness cannot be overstated. Training and advocacy efforts must target all systems and domains in which families find themselves including the child welfare system, education and early intervention, the legal and criminal justice systems, public health and primary care. In each of these areas, policy makers, program planners, and providers make decisions on a daily basis with profound impact on parents with mental illness and their children, and tremendous impact on the service systems assembling resources to meet the needs of these families. The targets of training and advocacy efforts must include: child welfare workers, teachers, early intervention providers, lawyers, judges, law enforcement personnel, and health care professionals. Professionals and advocates must inform legislators and policy makers, as well as the general public, about the impact of their decisions on families in which parents have mental illness, and the potential opportunities for cost-savings through public awareness, education, prevention and early intervention.

Within the mental health arena, providers must acknowledge the significance of the parenting role to adults with mental illness, and the impact of parenting status on service utilization and treatment compliance for entire families. The responsibilities and needs of adults with mental illness as parents may conflict with the treatment regimes prescribed by clinicians. For example, a mother who has to fix breakfast and send her child off to school will not take medication that makes her lethargic in the morning, compromising her longer-term mental health to meet short-term goals. If a mother with mental illness does not have back-up child care, she will be extremely reluctant to be hospitalized, appearing to be resistant to providers' recommendations. Mental health professionals trained in traditional "adult" or "child" programs must be encouraged to consider the impact of family life on people they perceive as individual "patients," and the impact of mental illness and serious emotional disturbance on family life.

Advocates must work with families, parents and children, to overcome stigma within the family and the attitudes of parents themselves, which are often negative. Children live with the "secondary" stigma of having a parent with mental illness. They may be teased on the playground or embarrassed to bring friends home. Stigma and mental illness breed isolation. Family members want "normalizing" experiences that connect them with their peers, their neighbors, and the larger world. The development of a national advocacy network and peer supports may be key to promoting the well being and healthy functioning of parents with mental illness and their children.

Essential to training and advocacy efforts is the "buy in" of constituent groups traditionally considered as representing adults, parents, or children. We can no longer afford to focus on the needs of individual adults with mental illness or children with serious emotional disturbance, given the high probability that these individuals are, or want to be, living in families. Advocates must work together to bring attention to the needs and aspirations of whole families living with mental illness.

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