Policies, Practices, and Parents With Mental Illness, National Mental Health Information Center

CRITICAL ISSUE: A number of federal policies and state practices have potential ramifications for parents with mental illness and their families. The consequences of these policies and practices for families in which parents have mental illness are largely unstudied.

Several key issues are described below, based on review of available written materials and the comments of key informants. Key informants are researchers, consumers, policy-makers, and service providers who work in fields related to parenting and mental illness. The review is supplemented by research findings where they exist.

Adoption and Safe Families Act
The federal Adoption and Safe Families Act, Public Law 105-89 (ASFA) was signed into law on November 19, 1997. This legislation was passed by Congress with bi-partisan support and is the first substantive change in federal child welfare law since the Adoption Assistance and Child Welfare Act of 1980, Public Law 96-272.

ASFA is intended to address the issue of foster-care drift and to achieve a balance of safety, well-being and permanency for children in foster care. ASFA requires that state child welfare agencies make "reasonable efforts" to prevent the unnecessary placement of children in foster care and to provide services necessary to reunify children in foster care with their families. In certain circumstances, ASFA allows for the "reasonable efforts" statute to be bypassed, when it would not be reasonable to reunify children with their parents.1

The intention of ASFA is to promote safety and permanency for children who are alleged or determined to be abused and neglected, and to ensure that children do not languish in out-of-home placements, but are moved swiftly to either reunite with a parent or move to a permanent alternative living situation. ASFA seeks to promote permanency by establishing expedited timelines for determining whether children who enter foster care can be moved into permanent homes promptly--their own familial home, a relative's home, adoptive home, or other planned permanent living arrangement.

"Reasonable efforts" to provide services for the family may be bypassed if: The child has been subject to aggravated circumstances (as defined by state law) by the parent; The parent has been convicted of certain crimes; and, The parent has had involuntarily termination of rights to another child

Two new timelines are imposed. First, permanency hearings must be held for children no later than 12 months after they enter foster care (six months earlier than the prior Child Welfare Act of 1980). Second, state child welfare agencies must review existing caseloads and track new children entering into care so that termination of parental rights (TPR) proceedings will be initiated for children who have been under the responsibility of the state for 15 out of the most recent 22 months (Rauber & Granik, 2000). Once the TPR petition is filed and the proceedings are initiated, a court must determine first whether there are grounds for termination of the parents' rights and, second, whether it would be in the child's best interest to do so. (Children's Defense Fund, 2000). (Eventually both parents' rights must be terminated for a child to be free for adoption.) "Fifteen of the last 22 months" is a maximum timeframe; the state has discretion to file a TPR petition whenever it sees fit in the best interest of the child (Baker, 2000).

ASFA includes three circumstances that can preclude filing a TPR petition, even if the child has been in care for 15 out of 22 months: (1) the child is in the care of a relative; (2) the state agency documents a compelling reason why filing is not in the best interest of the child; or (3) the state agency has not provided to the child's family the services deemed necessary to return the child to a safe home consistent with the time period in the case plan. All fifty states and the District of Columbia have passed legislation to address the mandates required by ASFA. Receipt of federal child welfare funding was contingent upon the adoption of ASFA by state governments.

While the intent of ASFA is to protect the health and safety of children, the implementation of the law also seems, in many instances, to be detrimental to the interests of parents with mental illness. An attorney interviewed as a key informant indicated that in many cases, ASFA makes reuniting families where a parent has a mental illness more difficult. While family and environmental stability clearly contribute to positive outcomes for children, severing ties with birth parents also has costs (Miller, 1997; Nicholson, 1996). It is not always clear that these costs are outweighed by the benefits of foster care placement or adoption, or that terminating these relationships is always in the child's best interest.

Key informants working in this area noted that the chronic nature of mental illness combined with the limited number of specialized programs targeted to work with these families may make it more difficult for parents to regain custody of children before the 15 month window has passed. Fifteen months is an extremely narrow time frame when you factor in the often uneven course of mental illness and recovery, and the time needed for comprehensive family evaluation, treatment planning and adequate participation in services. Our research suggests that relatively few programs exist specifically to assist parents with mental illness and their families. Thus, the attempts of child welfare agencies to provide "reasonable efforts" to prevent removal of children or promote reunification of families may be difficult, if not impossible.

Key informants recommended that if a child is removed from a parent's custody, appropriate services must begin as soon as possible to avoid unnecessarily lengthy periods of separation between parent and child. All parties involved with the parent and family, i.e. lawyers, caseworkers, therapists, must work towards the common goal of finding and accessing services. If a parent is currently unable to care for his or her child, key informants advise that relatives be used as placement resources whenever possible, as this provides an exception to the requirement that a TPR be filed after 15 months of foster care placement. However, this may be contraindicated in situations in which relatives themselves have been abusive as parents, or are purposely seeking to undermine their family member's capacity to parent (Nicholson et al., 1998b).

SUMMARY: ASFA may have unintended consequences in its implementation. The incentives for permanency planning may motivate child welfare agencies to focus on out-of-home placement and planning for children in the allotted time frame, rather than to tackle the oftentimes complex needs of parents with mental illness. Fifteen months may not be enough time for thorough family evaluation, comprehensive planning, service implementation, and necessary progress to be documented. Compounding this, it appears that state child welfare agencies may often be unable to comply with "reasonable efforts" to prevent placement, or to promote reunification when services for families where a parent has a mental illness are limited. Child welfare staff, law enforcement personnel, attorneys, guardians ad litem, and the judicial system may be subject to the same misunderstandings and lack of knowledge about mental illness as the general public.

RECOMMENDATIONS: Given the emphasis on the developmental needs and well-being of children implied by the ASFA 15-month time frame, care must be taken to provide effective services to all family members immediately. Children's best interests, and parents' needs may be met by comprehensive, specialized, in-home services, so that separations are not necessary or so they can be minimized. The oftentimes-chronic nature of parental illness and uneven course of recovery require interventions to be both flexible and individualized to meet the unique needs of families. Efforts to find and access services for families must be coordinated and integrated at all levels of care and across systems of care. Child welfare and mental health policymakers and administrators must provide and coordinate resources to support the cross-system needs of children and their parents who have mental illness. The relationship between mental health and child welfare is a focus of the Substance Abuse and Mental Health Services Administration (SAMHSA) Child Health Service Act of 2000, underscoring the necessity of understanding and enhancing relationships between the two systems on behalf of children and families living with mental illness.

Training is a critical component for all of areas of the service system. Better education regarding mental illness, the relationship of mental illness to parental competence, safety and risk issues for children who have a parent with mental illness, and the impact of the termination of parental rights on children and adults are training areas that need to be provided for within the judicial system, the child welfare system, and the mental health system. Ultimately the costs of severing family ties must be empirically documented and weighed against the benefits of out-of-home placement and permanency planning on a case-by-case basis for families in which parents have mental illness. Research is needed to evaluate the costs and benefits of one choice over the other.

Americans with Disabilities Act
At first glance, the Americans with Disabilities Act (ADA) appears to present an ideal opportunity to advocate for and secure appropriate services for adults with mental illness who are parents. According to Title II of the ADA, state and local governments must provide people with disabilities equal opportunity to benefits from all programs, services and activities, e.g., public education, employment, transportation, recreation, health care, social services, courts, voting, and town meetings. State and local governments are required to make reasonable modifications to policies, practices and procedures where necessary to avoid discrimination, unless it is demonstrated that doing so would fundamentally alter the nature of the program, service, or activity being provided. Because child welfare agencies are covered under Title II, these programs, benefits, and services cannot discriminate on the basis of disability. Accommodations in services are required for those individuals whose needs are not met by existing services.

In December, 1999, the United States Supreme Court issued its decision in the case of Olmstead v. L.C. (527 U.S. 581, 144 L.Ed 2d 540, 119 S.Ct. 2176). The Court found that the ADA prohibits discrimination in the provision of public services and that no qualified individual with a disability shall, "by reason of such disability," be excluded from participation in, or be denied the benefits of, a public entity's services, programs, or activities. The Court further noted that in regulations issued by the Attorney General, pursuant to the authority of the ADA, a "public entity [is required to] administer… programs…in the most integrated setting appropriate to the needs of qualified individuals with disabilities (See 28 CFR § 35.130[d]). The Court also found that while public entities are not required to "fundamentally alter" the nature of their programs, they are required to make "reasonable modifications to avoid "discrimination on the basis of disability." (See 28 CFR § 35.130[b] [7]).

However, the ADA has provided little direct protection to parents with mental illness. Key informants working at the interface of mental health and the law note that numerous state courts have heard challenges to the ADA regarding the process of terminating parental rights of adults with mental illness. A number of state and federal courts have entertained ADA cases arguing the lack of reasonable accommodations for parents with mental illness (A. Grudzinskas, personal communication, January 18, 2001; Kerr, 2000; Mosier, 1998). In individual termination of parental rights hearings, several courts have argued that the rights of parents to services or accommodations in services are not included in the "benefits, services or programs" indicated by Title II of the ADA (Stefan, 2000). With the exception of a lower court ruling in Texas, no state has successfully called on the ADA to challenge parental rights terminations.

One legal expert key informant noted that parents may be discouraged from bringing ADA cases specific to parenting with a mental illness, seeing them as, "an ineffective use of time, money and resources." Some advocates, however, have had success arguing for state mandated parental supports in cases where a parent has a developmental disability. In many cases, the ADA has been inappropriately applied where the facts did not warrant a discrimination claim, for example, in situations in which the termination of parental rights was appropriate on grounds having nothing to do with a person's mental illness. In some states, Massachusetts for example, existing case law prohibits discrimination in termination of parental rights cases based solely on the question of someone's mental illness. The ADA defense is therefore not utilized since its use would require developing a new body of law.

The ADA affords less protection to parents with mental illness in cases of child custody, even though child welfare agencies and state statutes were intended by Congress to be subject to the ADA. (The recent U.S. Supreme Court decision in Board of Trustees of the University of Alabama v. Garrett, 121 S.Ct. 955, 148 L.Ed 2d 866, which held that Congress exceeded its authority in abrogating the State's Eleventh Amendment immunity from suits, applies on its facts, only to money damage actions against the States in employment suits, and does not affect the actions discussed in this paper.) Decisions of state court judges regarding custody cases between competing parents most likely cannot be challenged under the ADA (Stefan, 1998).

SUMMARY: To date, the ADA has afforded little protection to parents with mental illness in termination of parental rights situations.

RECOMMENDATIONS: The ADA remains a potentially useful approach to defending against the termination of parental rights when properly applied in appropriate cases. Key informants recommended that advocates from all disciplines should coordinate efforts to make parenting with a disability a defendable right under the ADA. Lawyers, consumers, family members, providers and policy-makers could learn from other disability rights activists, e.g., developmental disability advocates, who have successfully defended the rights of parents, and incorporate these techniques into current advocacy efforts.

Personal Responsibility and Work Opportunity Reconciliation Act
The latest effort in welfare reform, the Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA), has a potentially mixed impact on parents with mental illness. Low-income families, particularly women receiving welfare, have disproportionate rates of serious mental illness (Moore, Zaslow, Coiro, Miller & Magenheim, 1996). The five-year lifetime limit on assistance and the requirement that recipients obtain jobs after two years of continuous support are of particular concern given the prevalence of depression in women on welfare, and the relationship between depression and employment (Lennon, Blome, & English, 2001). New work requirements, detailed in the Temporary Assistance to Needy Families (TANF) state block grants, do not specifically consider mental illness as a barrier to work (Knitzer, 2000). While states have some flexibility when working with high-risk recipients, no requirements exist to explicitly protect the interests of persons with mental illness.

Mothers with mental illness in the welfare system are at a distinct disadvantage. Low paying work and the lack of job training programs for persons with mental illness are common obstacles to employment. Employers may be unwilling to hire persons with mental illness because of the stigma attached, often regardless of a person's ability to do the work required. Individuals with mental illness may need long-term support with all aspects of employment, including career planning, job negotiations, and learning new skills (Bond, Drake, Becker & Mueser, 1999). Finding and affording childcare are major stressors for all mothers, and are additional stressors for women juggling the multiple demands of parenthood and living with mental illness.

Welfare reform advocates report a linkage between depression and employment, and economic barriers for women, a finding supported by the research literature (Lennon et al., 2001; Moore et al., 1996). Key informants also reported that few mothers and families on welfare receive mental health treatment, and families remaining on the welfare rolls since PRWORA are often the most vulnerable.

SUMMARY: There are high rates of mothers with mental illness on welfare with no supports. Without appropriate supports, mothers with mental illness may be unable to comply with PRWORA/TANF regulations, resulting in greater compromise for families as they are unable to access benefits. PRWORA and TANF do not consider how the stressors of mental illness and work interact with the work of being a parent.

RECOMMENDATIONS: The unique circumstances of mothers with mental illness in the welfare system must be acknowledged. Resources must be in place to provide supports to mothers with mental illness on welfare and their families. Recent legislation, such as the Ticket to Work and Work Incentives Improvement Act, supports persons with disabilities moving towards work and independence. Job training addressing issues of work and mental illness could benefit both potential employees and employers. Accessible and affordable child care are essential to all families with working parents, and are extremely important to parents with mental illness, given their worries and concerns about their children's well-being.

Managed Care and Mental Health Carve-Outs
There are no data on the needs or service utilization issues of parents with mental illness in the private sector, particularly in the current managed care environment. It is not known whether the protocols for decision-making by managed care organization (MCO) gatekeepers or utilization review staff are sensitive to the needs of adults with mental illness who are parents. We are aware of a recent case in which, in order for reimbursement for a new mother's psychotherapy for depression to be authorized by her MCO, she was required to take antidepressant medication. Because of this, she was unable to continue breast-feeding ("Taking a Different Path," 2000). Standard treatment protocols used by MCOs in decision making may be vulnerable to the same stigma and assumptions at work in the public sector, i.e., that adults with mental illness are not recognized as parents.

Managed care organizations (MCOs) have the opportunity to develop initiatives, authorize preventive services, and coordinate providers' efforts, which could reduce mental health service costs both for parents and children over time. The primary care venue may provide opportunity for the early identification of problems and intervention for both parent and child, assuming assessment and treatment issues can be effectively addressed (U.S. Department of Health and Human Services, 2000a). The emphasis of MCOs on wellness and prevention is complementary to the notion of parenting interventions, both as adjunct to treatment for adults with particular mental health issues, as well as supporting resilience in children. MCOs might well avoid later costs associated with mental health services for children through earlier preventive efforts with those deemed to be "at risk" (Beardslee et al., 1997a, 1997c). Employers who are concerned about worker productivity and days on the job could encourage MCOs to support adults with mental illness in dealing with parenting and their children's issues. While parenting supports seem to fit with the philosophy of managed care, services specifically for parents such as support groups or psychoeducation interventions are not traditionally third-party reimbursable.

As state mental health agencies (SMHAs) move towards managed care initiatives to coordinate their public mental health effort, it is important to consider how the "privatized," "carved-out" public sector mental health system responds to adult clients who are parents. The number of states with public sector managed behavioral health programs has tripled over three years. In 1999, 42 states had some form of managed behavioral health care, compared to 1996 when 14 states had managed care programs (U.S. Department of Health and Human Services, 2000b). By providing public sector mental health services through managed care organizations, SMHAs are delegating assessment and treatment functions to private companies, thereby, in some sense, both abdicating responsibility and missing opportunities to influence standards of care and practice. Several SMHAs in our survey could not tell us whether their public sector clients were parents simply because they assigned the responsibility for background data collection to the MCO.

SUMMARY: Managed care organizations may overlook the unique needs of their adult subscribers with mental illness who are parents in their standardized treatment authorization and utilization review processes. In not considering the interaction of parental mental illness, treatment recommendations, families' needs, and increased health care expenditures, MCOs may be missing opportunities to coordinate and deliver preventative and palliative care to minimize ultimate costs for adults and children. The typical MCO short-term view of the healthier slice of the population mitigates against enhanced long-term outcomes or cost savings. By providing public mental health services through private, managed care organizations, SMHAs may be missing opportunities to influence standards of care.

RECOMMENDATIONS: Given the prevalence of women and men with mental illness who are parents, it is in the employers' best interest to review standards and policies in light of the needs of families, and begin working towards wellness for both adults and children. Parenting interventions are complementary to a coordinated, family-centered preventative approach, promoting positive, pro-active health care for both adults and children. MCOs have the opportunity to reach families through mental health and primary care venues before children develop problems. It is in the best interest of states, which benefit from long-term planning and prevention, to contract with MCOs for services that include a focus on prevention and palliative care.

State Mental Health Agencies
In 1999, 51 SMHAs were surveyed (including the District of Columbia) to explore whether and how public sector mental health systems respond to the needs of adult clients who are parents. Results indicate fewer than 25 percent of SMHAs formally identify adult clients as parents (Nicholson, Biebel, Hinden, Henry & Stier, unpublished raw data). Ten years previous, a similar survey found only 31 percent of SMHAs routinely collected data on whether women had preschool-age children (Nicholson et al., 1993). Results suggest SMHAs' attention to the needs of clients as parents has become increasingly limited over the last decade. This decrease in attention is also seen with regards to assessing parent functioning. In 1999, approximately 20 percent of SMHAs assessed adult clients' functioning as parents, while 1990 survey results indicate 45 percent of SMHAs provided opportunities for assessment of parents' skills.

The 1999 survey also explored coordination between SMHAs and other state systems regarding families in which parents have mental illness. Results suggest SMHAs are most likely to coordinate with the child welfare or education/early intervention systems, and least likely to coordinate with the corrections system. Coordination with SMHAs most often occurs through interagency collaborations or multi-agency team meetings. Few SMHAs coordinate efforts with other systems through linked information systems or uniform service application or intake forms.

Results from the 1999 SMHA survey support the traditional notion of SMHAs serving only eligible individual clients. This is problematic because adults, especially adults with children, live in families around which treatment and services should be designed and implemented. For example, mental health key informants spoke of parent's and children's devastation when hospitals prohibit visitation. The inability of parents and children to be together during these stressful times can be confusing and hurtful. Parents are unable to concentrate on recovery, and children do not understand where their parents are or why they cannot see them. Key informants from the mental health policy arena support the importance of SMHAs' identification of clients as parents, a critical first step to answering the questions, "Who are parents with mental illness?" and "What are their needs?"

SUMMARY: Most SMHAs are unaware of the parenting status of their adult clients. If anything, SMHAs are less responsive to parents in the public mental health system than they were ten years ago, specifically with regards to the identification of parental status and assessment of parenting skills. Systems and services that ignore the needs of individuals as family members, e.g., that pass up opportunities for crisis planning through advance directives, will be less effective in meeting the needs of parents or children. SMHAs unresponsive to the needs of parents and 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.

RECOMMENDATIONS: SMHAs must prioritize both identifying the needs of adult clients as parents, and creating programs and policies that address the issues of clients with children. SMHAs need to embrace the notion of adults with mental illness as parents, both to combat stigma surrounding individuals' abilities to parent, as well as to provide for the needs of families. The individual client model is inappropriate for adults with children, who have a myriad of needs outside of the traditional model of "adult" mental health care. Pro-active, integrated intervention with a family-centered focus must become the standard model of care for mental health services in the public sector.

Critical Issues for Parents with Mental Illness and their Families

Chapter V