Critical Issues for Parents with Mental Illness and their Families

Chapter III

Service Needs and Barriers to Service Utilization

CRITICAL ISSUE: Parents with mental illness have needs common to all parents, as well as needs specific to their illnesses. The stigma of mental illness and the pervasive assumption that parents with mental illness will fail keep many parents from seeking help. Parents may appear to be non-compliant with service plans that are deficit-based or do not consider their unique needs as parents. Existing services may be irrelevant to the specific needs of these families, or fragmented due to organizational issues and funding streams.

The Needs of Parents
Parents with mental illness and their service providers identify a set of needs and challenges generic to all parents (Cook & Steigman, 2000; Mowbray et al., 2000; Nicholson & Henry, in press; Nicholson et al., 1998a, 1998b). These include: access to safe, affordable housing; transportation; employment, or educational or vocational training opportunities; access to benefits and entitlements when work is not possible; low-cost or free recreational activities for families; safe, dependable child care; adequate health care; support for learning parenting skills; trusted respite care for children, when parents need to be hospitalized or take a break from parenting responsibilities; and support for advocating for themselves and their children's needs, particularly with the school system (Nicholson & Henry).

While these challenges may be similar to those of other parents in nature, they may differ in degree. Mowbray and colleagues, in their study of mothers with mental illness in Detroit, indicate that neighborhood safety is a worry for many; unemployment rates are extremely high; physical health is rated poorly; and mothers report a high frequency of stressful life events and hassles, such as psychiatric and financial crises, death of a close friend or relative, and separation from children (Mowbray et al., 2000). While these are common problems among poor families, the unemployment rate of these Detroit mothers with mental illness is four times that of women in the same census tracts, suggesting that living with mental illness plays a role above and beyond that of poverty alone.

Parents also face challenges specific to their illnesses, which alter their experiences as parents and influence their relationships with their children. Managing symptoms and taking steps essential to recovery may drain individual and interpersonal resources. For example, obtaining services, implementing treatment regimes, and maintaining relationships with helpers require time and energy. Parents with mental illness often must advocate for themselves and their children to obtain necessary services and supports, and deal with the access challenges inherent in the "managed care" era. Parents with mental illness face the additional, illness-related challenges of understanding the impact of their illness on their children, and communicating with their children about their illness and recovery.

Some of these needs may be met in the mental health service system. In the above mentioned study of mothers in Detroit, the vast majority were receiving mental health services, which they found "somewhat helpful"(Mowbray et al., 2000). While about 44% listed their mental health provider as a source of support, only 20% of the mothers listed their mental health provider as someone who could be supportive about being a mother. In the past, research has shown that parenting services are more often provided through the child welfare system (Nicholson et al., 1993). However, mothers may view child welfare case workers quite negatively (Mowbray et al.; Nicholson et al., 1998a). In Mowbray's study, nearly 40% of the mothers gave child welfare case workers one of the highest hassle ratings, which the researchers attribute to mothers' long-standing concerns about losing custody of their children and more recent fears about being taken off welfare.

Mothers with mental illness in focus groups also talk about what their children need: nurturance, discipline, encouragement to develop their talents and interests, positive role models and friends, a dependable home environment, safe places to go away from home, to feel "regular" or "normal" like other families, open communication with their parents, and to understand that they are not responsible for their parents' illnesses, nor are they responsible for "fixing" them (Nicholson & Henry, in press).

Barriers to Service Utilization
Mothers have identified problems with, and barriers to programs and services (Nicholson, 1996). The single most pervasive factor affecting parents' access to and participation in services is the stigma accompanying mental illness. Mothers are affected by their anticipation of, or actual experiences of, the negative attitudes of providers and family members. Women may hide their pregnancies from providers, fearing negative comments and the potential loss of custody (Empfield, 2000; Nicholson et al., 1998a). Obviously, prenatal care is jeopardized. Pregnant women with schizophrenia are not likely to receive obstetric consultation until their third trimester of pregnancy, nor to keep follow-up obstetric appointments after discharge from inpatient psychiatric care (Miller et al., 1990).

Stigma and assumptions about individuals with mental illness may lead providers to the conclusion that adults with mental illness are not parents or cannot parent successfully. Therefore, adults' goals regarding parenting and caring for their own families may not be identified or addressed by providers. The primary concern of adult providers is who will care for the patient, not whether the patient will be caring for someone else (Nicholson et al., 1993). Lack of attention to adults' goals as parents decreases the likelihood of their involvement in programs or compliance with treatment recommendations (Oyserman, Mowbray & Zemencuk, 1994).

The stigma of mental illness ultimately translates for parents into the fear of custody loss particularly because of the assumptions made by society at large about individuals with mental illness, i.e., that they are incompetent, violent or potentially dangerous. Fear of losing custody can keep parents from acknowledging problems and requesting services (Hearle et al., 1999; Nicholson, 1996). Worry about losing custody or contact with children can contribute to parents' stress (Nicholson et al., 1998a). The removal of a child from a parent's care may undermine a parent's motivation to recover, and may contribute to decompensation. A focus on deficits and the assumed or real inadequacies of parents with mental illness, rather than their strengths, contributes to a cycle of hopelessness and a view of the "helping" relationship as adversarial (Nicholson & Henry, in press).

If treatment plans are made without considering the adult's goals, identity or responsibilities as a parent, the adult may appear to be non-compliant with recommendations. For example, mothers who need to get up early to fix breakfast and send their children off to school may not take medications that make them lethargic in the morning (Nicholson et al., 1998a). Mothers who have not identified acceptable respite care for their children may resist hospitalization. A parent's recovery may be jeopardized if she is not allowed contact with or provided information about her children when she is hospitalized, or when her children are in foster care.

Parents with mental illness view typical parenting programs as irrelevant, inappropriate or uncomfortable (Nicholson, 1996). While parent skills training interventions, for example, may offer strategies for managing children's behavior, the issues of setting limits and doling out consequences when a parent is feeling distracted, fatigued or worthless because of a mental illness are not addressed. And traditional programs for adults with mental illness do not appear to deal with the issues of parents. For example, ACT or PACT case management services do not routinely encompass the needs of adults as parents, though the model could certainly be adapted. Parenting is not mentioned as an issue in community living (McGrew, Wilson & Bond, 1996), nor are variables related to parenting typically included as ACT outcomes (Mueser, Bond, Drake & Resnick, 1998).

Services may not be culturally relevant. Significant differences among racial and ethnic groups in patterns of care giving when mothers have serious mental illness suggest that parents of different racial and ethnic membership have unique strengths and needs, requiring specific interventions and supports (Gamache et al., 1995; White et al., 1995). Not only may the acknowledgment, understanding, and impact of mental illness on families vary with race and ethnicity, but race and ethnicity themselves are known to be barriers to service access (U.S. Department of Health and Human Services, 2000a).

Services for parents and children may be fragmented (Blanch et al., 1994). Funding streams, and program eligibility requirements may limit participation to eligible adults or children, but not both. Services for adults and children may be provided in different locations. Programs or treatment settings may not allow adults with children to participate, e.g., emergency shelters or residential programs. Prevention services for adults and children in these families are rare. Children whose parents have mental illness, who might benefit from prevention services, may not be eligible for services because they do not have diagnosable conditions, i.e., there is no demonstrable "medical necessity." Parenting services in the public sector may be available only through the child welfare system; a parent may have to be determined abusive or neglectful to be eligible (Nicholson et al., 1993).

Cook and Steigman (2000) summarize a set of principles for working with parents with mental illness and their children. These include:

Ongoing availability of services;
Family must be the focus of service delivery;
A service mix of treatment, rehabilitation, and support;
Sensitivity to stigma associated with mental illness and prejudices faced by parents with mental illness;
The importance of custody concerns;
Parenting serves as the foundation for a parent's recovery; and
Interagency collaboration.

Comprehensive services for parents with mental illness include an assessment of parenting strengths and needs; case management; peer support, self-help and parent mentoring; medication management; birth control counseling, pregnancy decision-making and support; crisis and respite care; foster care support and linkage; trauma and abuse counseling; substance abuse treatment; marital and family counseling; housing and supports for independent living; child development and parent skills training; assistance with school issues; advance directive planning and support; and benefits and public entitlement counseling (Cook & Steigman, 2000).

SUMMARY: Parents with mental illness have needs common to all parents as well as needs specific to their illness. The stigma attached to mental illness is a significant barrier to service utilization for parents with mental illness and their families. Adults with mental illness may not be asked about their goals or role as parents. Services are deficit-based, oftentimes available only when parents or children have diagnosable problems or when abuse or neglect have been documented. Differing patterns of caregiving across racial and ethnic groups strongly underscore the need for culturally relevant services. Services are fragmented, with seemingly arbitrary barriers existing between systems and within systems, e.g., the mental health and child welfare systems, and "adult" and "child" mental health services.

RECOMMENDATIONS: The general public, providers, and families need to be made aware of and educated about the issues and strengths of parents with mental illness. Values and attitudes regarding parents with mental illness need to be clarified in professional training programs. Services must be developed that are relevant to the needs of parents and families, and that are family-centered and strength-based. "Adult" and "child" services must be integrated across and within systems to reduce service fragmentation or duplication, and to ensure that services are as accessible and as effective as possible.

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