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C 2006) Psychiatric Quarterly, Vol. 77, No. 2, Summer 2006 ( DOI: 10.1007/s11126-006-9001-3

A NATIONAL SURVEY OF STATE MENTAL HEALTH AUTHORITY PROGRAMS AND POLICIES FOR CLIENTS WHO ARE PARENTS: A DECADE LATER Kathleen Biebel, Ph.D., Joanne Nicholson, Ph.D., Jeffrey Geller, M.D., M.P.H., and William Fisher, Ph.D.

Published online: 14 June 2006

This study presents a survey of State Mental Health Authorities’ (SMHA) programs and policies addressing the needs of adult clients in their role as parent. Six program and policy areas (parent status identification, parent-focused residential programs, parent functioning assessment, outpatient services for parents, policies for hospitalized parents, and policies for hospitalized pregnant women) are examined. Results of the most recent 1999 survey are compared with results from a similar 1990 survey. This comparison reveals that the Kathleen Biebel, Ph.D., is Research Assistant Professor, Department of Psychiatry, University of Massachusetts Medical School, 55 Lake Avenue North, Worcester, Massachusetts 01655. Joanne Nicholson, Ph.D., is Professor of Psychiatry and Family Medicine, University of Massachusetts Medical School. Jeffrey Geller, M.D., M.P.H., is Professor of Psychiatry, University of Massachusetts Medical School. William Fisher, Ph.D., is Professor of Psychiatry, University of Massachusetts Medical School. Address correspondence to Kathleen Biebel, Ph.D., is Research Assistant Professor, Center for Mental Health Services Research, Department of Psychiatry, University of Massachusetts Medical School, 55 Lake Avenue North, Worcester, Massachusetts 01655; e-mail: [email protected]. 119 C 2006 Springer Science+Business Media, Inc. 0033-2720/06/0600-0119/0

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majority of SMHAs continue to overlook adult clients in their parenting role, and few SMHA programs and policies address issues of parenting. KEY WORDS: state mental health authority; parents; mental health policy.

OBJECTIVE The majority of adults in the United States who meet criteria for mental illness during the course of their lifetime are parents (1,2). Families living with parental mental illness face numerous challenges including increased risk of custody loss, children at risk for psychological problems, and financial instability (1). Many parents with mental illness say that not being able to parent their children compromises their well-being, and impedes their progress towards recovery (3,4). In order for parents with mental illness to have optimal community functioning, their role as parent must be considered. In 1993, Nicholson and colleagues published the first national survey of State Mental Health Authority (SMHA) Commissioners regarding programs and policies for adult clients in their role as parent (5). Nicholson et al. found that SMHA clients’ status as parents was not routinely identified, and no policies existed to provide contact between hospitalized mothers and their children (5). Neglect of the parenting role can increase barriers to services for families, may result in missed opportunities for promoting rehabilitation and recovery of adult clients, and may jeopardize their reintegration into community life. The current survey study examines 1999 SMHAs’ programs and policies to replicate the earlier study of SMHAs regarding adult clients who are parents, and to compare findings.

METHODS In February 1999 a survey was mailed to the Commissioner or Director of mental health of each state and the District of Columbia requesting information about SMHA programs and policies for adults with mental illness in their role as parents. The 1999 survey was based on the 1990 survey, developed and administered by the authors, which requested information about women who received services from public sector mental health providers and who had preschool age children. The

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1999 survey included several new questions and expanded the scope of the 1990 survey. The 1999 survey was inclusive of parents of children of any age, and asked about all parents with mental illness, i.e., did not focus exclusively on mothers. Multiple questions were collapsed into six areas that most closely resembled the six questions from the 1990 survey. 1999 SMHA survey questions were designed to obtain information about SMHAs’ policies and programs provided to clients who are parents with mental illness. Survey respondents were asked the following questions: (1) Are all adult clients formally identified as parents by the SMHA? (2) [Does the SMHA] have Community Residential services/programs for adult SMHA clients who are parents? (3) Are male/female SMHA clients assessed regarding their functioning as parents? (4) [Does the SMHA] have Community/Rehabilitation, Employment/Vocational, Clubhouse, Day Treatment, or Outpatient services/programs for adult SMHA clients who are parents? (5) [Does the SMHA] have specific policies or practice guidelines in acute and continuing inpatient settings re: adult SMHA clients who are parents? (6) [Does the SMHA] have specific policies or practice guidelines in acute and continuing inpatient settings re: adult SMHA clients who are pregnant? Data from the survey were categorical, with the majority of questions having “Yes, No, or Don’t Know” response options. The 1999 survey was reviewed by experts in parenting, mental health and policy, and SMHA administrators for relevance, clarity, and ease of completion prior to its distribution. Study methods were reviewed by the University of Massachusetts Medical School Institutional Review Board. Participation in the 1999 survey was 100 percent, with either the SMHA Commissioner or Director of adult mental health services completing the survey. All surveys were returned within eight months. Responses were analyzed using descriptive statistics. Data were internally cross-checked for consistency and analyzed for links between response patterns and respondents.

RESULTS States with SMHAs providing affirmative responses to the questions regarding programs and policies for parents with mental illness receiving SMHA services are listed in Table 1, along with responses to comparable items from the 1990 survey.

State

Policy or program

1999 State

Arkansas, Arizona, Delaware, Formal identification of Alabama, Arizona, Connecticut, Kentucky, Maryland, Michigan, adult clients as District of Columbia, Idaho, Nebraska, Oregon, Pennsylvania, parents by the SMHA Illinois, Massachusetts, Nevada, South Dakota, Tennessee, New Jersey, South Carolina, Vermont, Virginia, Washington, Tennessee, Wisconsin (N = 12) Wisconsin, Wyoming (N = 16) Residential California, Connecticut, Florida, Community Residential District of Columbia, Kentucky, programs Louisiana (N = 4) programs for parents Minnesota, Missouri, Nevada, New York, Ohio, South Dakota (N = 8) Formal assessment Arkansas, California, Connecticut, Assessment of parent Arkansas, California, District of of parenting Delaware, District of Columbia, functioning Columbia, Kentucky, Louisiana, skills Indiana, Kentucky, Maryland, Minnesota, North Dakota, Mississippi, Missouri, Montana, Oregon, South Dakota, Utah, Nebraska, Nevada, New Mexico, Vermont (N = 11) New York, North Carolina, Ohio, Oregon, Rhode Island, South Dakota, Tennessee, Virginia, Washington (N = 23)

Routine collection of data on whether patients have young children

Policy or program

1990

Table 1 Comparison of SMHAs’ Programs and Policies for Parents with Mental Illness in 1990 and 1999

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Policy or program

Alabama, Arkansas, Colorado, Community/ Connecticut, Delaware, District of Rehabilitation, Columbia, Florida, Hawaii, Employment/ Indiana, Kentucky, Maryland, Vocational, Minnesota, Mississippi, Missouri, Clubhouse, Day Montana, Nebraska, Nevada, Treatment or New Mexico, New York, North Outpatient services Carolina, Ohio, Oregon, Rhode for parents Island, South Dakota, Tennessee, Virginia, Wisconsin, Wyoming (N = 28) None Policy for hospitalized parents

State

Policy that addresses contact between hospitalized mothers and their children Policy that Alabama, California, Connecticut, Policy for hospitalized addresses care of Florida, Iowa, Kentucky, pregnant women hospitalized Maryland, Nebraska, New Jersey, pregnant women Virginia (N = 10)

Outpatient services focused on parenting skills

Policy or program

1990

Table 1 Continued

State

Arizona, California, District of Columbia, Massachusetts, Nevada, Oklahoma, Pennsylvania, Rhode Island, South Carolina, Missouri (N = 10)

Illinois, Massachusetts (N = 2)

District of Columbia, Kentucky, Louisiana, Massachusetts, Missouri, Nevada, New York, Ohio, Rhode Island, South Carolina, South Dakota, Utah (N = 12)

1999

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1999 Survey Respondents from 12 SMHAs reported that adult clients were formally identified as parents. Respondents from eight SMHAs reported having Community Residential programs for adult SMHA clients who are parents. Eleven SMHA respondents reported their SMHA provides for assessment of adult clients, both female and male, regarding their functioning as parents. Respondents indicated 12 SMHAs provide services for adult clients who are parents in one or more of five categories of outpatient care: Community/Rehabilitation, Employment/Vocational, Clubhouse, Day Treatment, or Outpatient. Only two respondents reported SMHA policies regarding hospitalized adult clients as parents. Respondents from 10 SMHAs reported policies for hospitalized clients who are pregnant. Comparison of 1990 and 1999 Survey Results Findings from the 1999 survey indicate that, in general, fewer programs and policies for parents with mental illness were offered by SMHAs in 1999 than in 1990. In 1999, 12 SMHA respondents (24%) reported the formal identification of adult clients as parents, a decrease from the 1990 survey finding of 16 SMHAs (32%). In 1999, however, eight SMHA respondents (16%) acknowledged having residential programs specifically for parents, an increase from the 1990 survey results of four SMHAs (8%). Only 11 SMHA respondents in the 1999 survey (22%) indicated clients’ functioning in their parenting role is assessed, compared to the 1990 survey in which 23 SMHA survey respondents (46%) reported providing formal assessment of parenting. In 1999 respondents indicated only 12 SMHAs (24%) provided outpatient services targeted to parents, a decrease from 1990 survey findings of 28 SMHAs (56%). However, 1999 survey findings indicated that two SMHAs (4%) had policies addressing contact between hospitalized parents and children, compared to findings from the 1990 survey when no SMHAs had similar policies. Finally, 10 respondents in both the 1999 and 1990 surveys reported their SMHA had policies addressing the care of hospitalized pregnant women.

DISCUSSION This study provides information about an important but understudied cohort of SMHA clients. Findings suggest that, in 1999, few SMHAs


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had programs or policies specific to the needs of adult clients in their role as parent. The results should be interpreted with some caution, as the SMHA survey respondents themselves may be unaware of SMHA responses to or supports for adult clients who are parents. Furthermore, SMHAs were less likely to address the needs of clients as parents in 1999 than in 1990. This shift is difficult to explain, given the increasing attention in the professional and popular literature to parents with mental illness (6–8). The lack of attention by the SMHAs to identifying adult clients who are parents and their needs may be related to the trend over the past decade to carve-out behavioral health services and the shift in locus of responsibility and, hence, the requirements for data collection and for meeting the unique service needs of Medicaid clients, from the SMHAs to private insurers. Another consideration to account for SMHAs’ lack of attention to parenting issues in persons with serious mental illness is the changes in SMHAs’ budgets. If overall SMHA budgets declined during the decade of the 1990’s, SMHAs might simply have had fewer resources to devote to programs for parents in a pattern no different from having fewer resources to expend on all programs. However, SMHAs’ budgets did not decrease from the beginning to the end of the 1990’s. In constant dollars, the mean and median per capita expenditures by SMHAs were higher in fiscal year (FY) 2002 than in FY 1990. The total SMHA expenditures for inpatient services was less in FY 2001 than in FY 1990 in 38 states, meaning there would be more SMHA funds to expend on other, most likely community-based, projects (even if there had been level funding). Looking at the revenue side, all SMHAs together had a 20% decrease in funds received from state government sources; this was substantially more than compensated for by the 2001 Medicaid payments (federal and state) to SMHAs being 295% of the FY 1990 contributions; other federal government payments being twice as much in FY 2001 as they were in FY 1990; and revenues from first and third parties increasing by 20% (9). Hence, the absence of attention to parent-related data collection and parent-specific programming is not a function of financial constraints. Rather, it is a function of an absence of SMHAs prioritizing these issues and/or of Medicaid not paying for parent-related services. SMHAs’ attention to the issues of parents with mental illness varies considerably among States (1). Previous research by the authors found that 53% of SMHAs were in some way responsive to the parental role of adult clients, i.e., they responded “yes” to at least one question regarding identification of adult clients as parents, assessment of parental functioning, or provision of specific programs, services, policies or written guidelines for parents (3). SMHAs were most likely to identify adult

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clients as parents and/or assess clients’ parental functioning, next likely to have specific programs and services for such clients, and least likely to have specific policies and written guidelines for such clients. At the practice level, there have been very few studies of programs for parents with mental illness and their families—an unfortunate gap, given the need, and potentially far-reaching benefits of interventions. In 1999, Hinden and colleagues identified 23 programs across the U.S. designed and developed specifically for parents with mental illness and their families (10). Programs shared a common underlying orientation to parents with mental illness and their children that promoted the use of “family-centered,” “strengths-based,” approaches to meet the complex needs of the families. While interventions and treatment types varied across programs, essential components included case management and parent education and support. These “key ingredients” offer a template for future refinement and testing, as rigorous testing is required to appropriately inform policy and practice. Individual mental health practitioners, working independently or in community-based clinic settings, have many opportunities to improve outcomes for parents with mental illness and their children (11). Practitioners can inquire regarding an adult client’s status as a parent, or whether, in fact, the client is sexually active and contemplating parenthood. Asking about a client’s activities over the course of a typical day can help the practitioner understand the challenges faced by a client who is caring for children. Mental health practitioners can collaborate with other relevant providers, e.g., primary care providers, obstetricians, and pediatricians among others, to insure that family members receive appropriate supports. Practitioners must examine their own assumptions regarding adults with mental illness who may be considering parenthood or actively parenting, to be aware of situations in which they are in conflict with clients’ goals. Mothers with mental illness report that the negative attitudes of providers can keep them from acknowledging parenting issues or seeking appropriate help (12). SMHA policymakers and administrators can affect change for parents with mental illness and their families. Many of these opportunities can be initiated through adapting or modifying existing systems and structures. For example, SMHA decision-makers can prioritize the issues of parenting and the needs of families by providing supports and resources for all family members rather than for an identified adult or child client (1). Departmental forms and procedures can be modified to be “family-friendly,” with a shift in focus from collecting data on individual clients to collecting information on families. SMHA administrators, staff and providers can collaborate with sister service sectors, for


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example child welfare and criminal justice, which likely serve the same parents and families found in SMHAs to deliver integrated supports that maximize resources and minimize uncoordinated care. States can take advantage of the Medicaid Rehabilitation Option, which can provide reimbursement for an array of services useful to families such as basic living skills training, social skills training, and family education. States can also make use of existing Federal programs designed to improve the health and education of young children to address parental mental illness. Starting Early Starting Smart, for example, provides home visitation, parent education and in-home support, all of which are useful to families in which a parent has a mental illness. Head Start offers opportunities for screening, intervention and prevention regarding parental mental illness and includes programming to strengthening parenting skills and promote attachment between mothers and children.

CONCLUSION This study provides information about SMHAs’ programs and policies for adult clients in their role as parent. Given the high prevalence of parenting among adults with mental illness and the importance of the parenting role in recovery, it is disheartening that more SMHAs have not addressed the issues and concerns of parents. It is likely that the number of parents with mental illness will remain steady or increase in the coming years with the decrease in hospital-based mental health care, and an increase in more effective medication and treatment that allow individuals with mental illness to have more normalized lives. For many, this will include parenting. The failure of SMHAs to respond to parents with mental illness and their children results in missed opportunities to work toward wellness and recovery for adults, and may contribute to poor outcomes for both parents and children.

ACKNOWLEDGMENTS This study was supported by a grant from the National Institute of Mental Health (R03 MH0161026-01A1) and a contract from the Center for Mental Health Services, Substance Abuse and Mental Health Services Administration (98M00263101R).

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REFERENCES 1. Nicholson J, Biebel K, Katz-Leavy J, et al: The prevalence of parenthood in adults with mental illness: Implications for state and federal policymakers, programs, and providers, in Manderscheid RW, Henderson MJ (eds) Mental Health, United States, 2002. Rockville, MD, U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, 2004. 2. Apfel RJ, Handel MH: Madness and the loss of motherhood: Sexuality, reproduction, and long-term mental illness. Washington, DC, American Psychiatric Press, Inc., 1993. 3. Biebel K, Nicholson J, Williams V, et al: The responsiveness of state mental health authorities to parents with mental illness. Administration and Policy in Mental Health 32, 31–48, 2004. 4. Mowbray C, Schwartz S, Bybee D, et al: Mothers with mental illness: Stressors and resources for parenting and living. Family and Society 81, 118–129, 2000. 5. Nicholson J, Geller JL, Fisher WH, et al: State policies and programs that address the needs of mentally ill mothers in the public sector. Hospital and Community Psychiatry 44, 484–489, 1993. 6. Beardslee W: When a Parent is Depressed: How to Protect Your Children from the Effects of Depression in the Family. New York, NY, Little, Brown, 2003. 7. Nicholson J, Henry A, Clayfield J, et al: Parenting Well When You’re Depressed: A Complete Resource for Maintaining a Healthy Family. Oakland, CA, New Harbinger Publications, 2001. 8. Mowbray C, Oyserman D, Bybee D, et al: Life circumstances of mothers with serious mental illness: Stressors and resources for parenting and living. Families and Society 81: 118–129, 2000. 9. Lutterman T, Hollen V, Shaw R: Funding Sources and Expenditures of State Mental Health Agencies: Fiscal Year 2002. Alexandria, VA, National Association of State Mental Health Program Directors, 2004. 10. Hinden B, Biebel K, Nicholson, J, et al: A national survey of programs for parents with mental illness and their families: Identifying common elements to build an evidence base. Journal of Behavioral Health Services & Research, 33: 21–38, 2006. 11. Nicholson J, Biebel K: Commentary on “Community mental health care for women with severe mental illness who are parents”—The tragedy of missed opportunities: What providers can do. Community Mental Health Journal 38:167–172, 2002. 12. Nicholson, J, Sweeney E, Geller J: Mothers with mental illness: I. The competing demands of parenting and living with mental illness. Psychiatric Services 49: 635– 642, 1998.