2003 APA Gold Award: Helping Parents With Serious Mental Illness Retain Custody of Their Children

For more than eight years, parents who have a serious mental illness have been served by a special program in Iowa City that builds on their strengths and provides the services and supports that they need to avoid losing custody of their children. Related goals of the Family Support Services/PACE (Parents, Advocacy, Coordination, and Education) program—FSS/PACE—are to help parents with mental illness avoid unplanned hospitalizations and to increase the quality of life of families by building a bridge between mental health services and other service delivery systems.

FSS/PACE was created in 1995 in response to widespread recognition among staff of the Johnson County Department of Human Services that traditional child welfare services were minimally effective when parental mental health issues were a factor in the family's involvement in the child welfare system. Few staff were trained to work with these parents, and many believed that mental illness rendered these clients incapable of parenting. Without appropriate services, families were often disrupted by unplanned hospitalizations or out-of-home placements of children.

FSS/PACE staff establish supportive, unconditional, and therapeutic relationships with families. Services are provided for as long as the family needs them. Both staff members and families report that the strong relationships formed are more like those between family members than those between patient and therapist. The services offered by FSS/PACE include case management, individual therapy for both adults and children, medication and illness management, parenting skills training and child development education, problem-solving skills training, strength identification for the entire family, and advocacy. Case managers educate parents and family members about mental illness and its effects on the individual and the family. FSS/ PACE also offers 24-hour on-call support, emergency assistance, transportation, a monthly social support group for mothers, tenant-landlord mediation, financial assistance, crisis planning, transitional planning (for example, after hospitalization), and housing assistance. The primary site of service provision—the family's home—is integral to the program's success.

Another central feature of the program is its pursuit of collaborative arrangements with other service providers. FSS/PACE coordinates multiple providers around individual families. Program staff have built relationships with more than 60 different agencies. They work in partnership with professionals from many systems, including schools, juvenile justice, housing, mental health, corrections, and the courts. Program staff speak to community agencies on a regular basis about the FSS/PACE program and provide education about parenting and mental illness and good parenting practices. The program works with a variety of organizations to provide support to families. Among these organizations are the state chapter of the Alliance for the Mentally Ill, Goodwill Industries, the Salvation Army, individual charities, church-affiliated programs, Big Brothers and Big Sisters, physicians and nurses in the community, utility companies, summer camps, and emergency services. The program is fortunate in that Iowa City has created a culture of collaboration. Collaborators feel that the city has "a case management mentality."

In 2000 the Substance Abuse and Mental Health Services Administration (SAMHSA) chose FSS/PACE and four other programs as models of innovative efforts to serve parents with mental illness and their children. This article was adapted in part from a description of the FSS/PACE program presented in a SAMHSA publication—Steps Toward Evidence-Based Practices for Parents With Mental Illness and Their Families (www.samhsa.gov/centers/cmhs/cmhs.html).

The American Psychiatric Association has selected the FSS/PACE program of the Community Mental Health Center for Mid-Eastern Iowa as the winner of the 2003 Gold Achievement Award in the category of small community-based programs. The winner for large academically or institutionally sponsored programs is described on page 1529. The awards were presented on October 29 during the opening session of the Institute for Psychiatric Services in Boston. Each winning program will receive a plaque and a $10,000 prize made possible by a grant from Pfizer Inc.

Beginnings

In 1995 administrators at the Johnson County Department of Human Services (DHS) realized that many children in foster care placement had parents with serious and persistent mental illness and that these children were at risk of long-term placement. In addition, staff and administrators recognized that they were not well trained to work with adult mental health issues, particularly as they related to parenting. The department decided that it would benefit from a collaboration with mental health providers to serve this group of children and families.

In November 1995, DHS collaborated with the Community Mental Health Center for Mid-Eastern Iowa to create FSS/PACE. It was developed using a decategorization grant from the Iowa Department of Human Services. Initially, all referrals came through DHS. FSS/PACE provided therapy and case management services. Approximately a third of the first families served by FSS/PACE had at least one child in foster care at the time services began.

The relationship between DHS and FSS/PACE proved to be challenging. Differences in basic philosophies and approaches strained the collaboration. FSS/PACE case managers often felt that DHS was not able to integrate the needs of parents with mental illness into family plans and that goals set by DHS staff were often unrealistic for these families. DHS and FSS/PACE worked together until January 2000, at which point DHS funding ended. The Community Mental Health Center for Mid-Eastern Iowa began using federal block grant funds that are administered through the Iowa Department of Health and Human Services to provide services to adults with serious and persistent mental illness.

As a result of these changes, FSS/PACE underwent programmatic changes. The new budget could accommodate fewer families, and FSS/PACE decided to focus solely on families in which the parent has established custody. FSS/PACE gained autonomy as an independent program, which has enabled staff to advocate more strongly for the families they serve. Referrals began to come from agencies other than DHS, including local schools, private psychiatrists and other mental health professionals, physicians, University of Iowa Hospital and Clinics, University of Iowa partial hospitalization programs, day care providers, home health agencies, local housing programs, and clinicians at the community mental health center.

Services

To be eligible for the FSS/PACE program, a parent must have an axis I diagnosis or have experienced intensive inpatient or residential psychiatric treatment or have impaired employment, parenting, or basic living skills. Clients also must have at least one child under the age of 18 living in the home, must not be receiving family preservation services through DHS or being adjudicated by Child in Need of Assistance (CHINA), and must not be under investigation for child abuse or denial of critical care.

Potential participants are interviewed by FSS/PACE staff to assess interest in and appropriateness for the program. Families are assigned an FSS/PACE clinical case manager. The program is based on a family-systems-family-strengths model. Although the individual needs of parents and children are identified, the family is the unit of attention and intervention. Together, the family and case manager create a treatment plan describing the family's concerns, strengths, goals, potential barriers, and possible action plans. The focus of care in on the abilities of the family, not its limitations, which helps the family see itself outside a pathology paradigm. The amount and type of contact with families is determined by the family's needs. Most families have a minimum of one contact a week, with a follow-up by telephone. Families can stay with FSS/PACE for as long as they need services and have minors living in the home. The number of families served depends on the intensity of services required across families and the availability of the clinical case managers; some families are put on a waiting list.

The PSS/PACE clinical case managers provide mental health interventions in the home and the community for the entire family at regular meeting times that are not driven by crises. In-home meetings allow staff to work with families in a safe and comfortable space where strengths are likely to be more evident and where family members may be more likely to discuss difficult issues. Also, staff have found that scheduling in-home sessions makes it much easier to see multiple family members. FSS/PACE clinicians share information with other members of the family's treatment team. As a result, a comprehensive picture of the family is formed that provides valuable information about the family's strengths, abilities, and needs.

Staff

FSS/PACE is staffed by two master's-level licensed clinical social workers, who work closely with many of the clinical staff of the Community Mental Health Center for Mid-Eastern Iowa. The center has 43 employees, 26 of whom offer clinical or direct care services. Center staff with expertise in areas related to the care of FSS/PACE families provide both formal and informal consultation. Staff directly involved with FSS/PACE family members, such as child therapists and adult and child psychiatrists, often assist in service and goal planning and plan implementation.

The two FSS/PACE clinical case managers carry their own caseloads and are equally involved in decision making and overall program planning and development. They meet weekly for two hours to discuss cases and to engage in weekly and monthly planning. Each clinician is familiar with the other's families and treatment plans, and they can assist each other when crises occur. Once a month, the two FSS/PACE clinicians meet with the mental health center's three full-time psychiatrists to discuss cases. The center's psychiatry staff provide an important component of the program by helping the FSS/PACE clinical case managers address the chronicity of parents' mental illness.

Stigma is an enormous huge challenge for both FSS/PACE and for the families it serves. FSS/PACE staff work to educate the community, including teachers, child welfare case workers, lawyers, judges, primary care physicians, and landlords, about the myths and realities of mental illness. Through education, FSS/PACE hopes to lessen the struggles that families face daily.

Since the program was founded, FSS/PACE staff have sought out collaborative relationships with other providers. Collaboration occurs through regular and as-needed telephone contact and through scheduled case management meetings. In schools, collaborations often occur during parent conferences. FSS/PACE is seen by other providers in the community as the primary service "thinking about parenting and families." Community providers feel supported by FSS/PACE and are encouraged when situations in which they formerly felt helpless to prevent the removal of children now have better outcomes. These providers report that they are better able to focus on their work with families because of the support of FSS/PACE.

Outcomes

Since the program began in 1995, FSS/PACE has served more than 80 parents identified as having serious mental illness and their families. About 20 families are on the program's caseload at any given time. Typically, a family remains in the program for three years, but some families have received program services for up to eight years. Of the 80 adults served, 60 have been Caucasian, ten have been African American, one has been Latino, and two have been from South America. Most often, the mother has been the parent who has mental illness. However, FSS/PACE has served fathers and single fathers in the past. About half of the children served by the program have been between five and 11 years old, and about a third have been between 12 and 18 years old. Most families live in their own homes or apartments; some families receive government housing subsidies.

The most frequent diagnosis among parents is major depressive disorder; about a third have this disorder. Other diagnoses include bipolar disorder, schizophrenia, generalized anxiety disorder, posttraumatic stress disorder, dysthymia, and obsessive-compulsive disorder. About a third of the children have psychiatric problems. Most common are attention-deficit hyperactivity disorder, depression, and oppositional defiant disorder.

The FSS/PACE program was evaluated in the spring of 1999 for the period November 1995 through March 1999. Three outcomes were examined: hospitalizations per year, foster care placements per year, and child psychiatry admissions per year. Results showed that 26 of the 29 adults in the study experienced fewer hospitalizations or remained out of the hospital. Foster care placements decreased by 80 percent, and children in 27 of the 29 families experienced fewer psychiatric hospitalizations and residential placements or did not experience any.

During fiscal year 2001-2002, the parents served by FSS/PACE had half the number of hospitalizations as they had in the previous year. No children were hospitalized, and the number of out-of-home placements for children did not increase.

Funding

The mental health center uses federal block grant funds as the primary funding source for FSS/PACE, to which it allocates a portion of a federal block grant. The funding is used primarily to cover staff salaries. All other services, including clinical case management, are funded through a variety of other means (see below). In addition, FSS/ PACE continues to apply for grants and to receive money from charities and pharmaceutical companies.

During fiscal year 2001-2002, FSS/ PACE received funding from the United Way of Johnson County ($14,774), the Federal Community Mental Health Services Performance Partnership Block Grant ($34,615), fundraising ($6,989), St. Mary's Peace and Justice Committee ($300), and the Community Mental Health Center for Mid-Eastern Iowa ($7,289).

The existence of the FSS/PACE program means that at-risk families in the Iowa City area receive an extra measure of care and support. For many adults with mental illness, the program has made the difference between being a good parent and losing a child. When people's minds are changed about the parenting capabilities of persons with mental illness, the entire community benefits.

For more information, contact Kit Dinneen Crane, M.S.W., L.I.S.W., program coordinator, or Susan Totten, L.M.S.W., Community Mental Health Center for Mid-Eastern Iowa, 507 East College Street, Iowa City, Iowa 52240; phone 319-338-7884, ext. 212 (for Ms. Crane) or 215 (for Ms. Totten); fax 319-338-7006; e-mail, kcrane @meimhc.org.