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Steps Toward Evidence-Based Practices for Parents
with Mental Illness and their Families
Family Support Services/PACE Program
Iowa City, IA
Program Description
The Family Support Services/PACE (FSS/PACE) program is a program of the Mid-Eastern Iowa Community Mental Health Center (MCMHC), located in Iowa City, Iowa. PACE stands for Parents, Advocacy, Coordination and Education. The program provides clinical case-management for families in which a parent has a serious and persistent mental illness, and has minor children living in the home. The primary goal of FSS/PACE is to prevent or reduce child welfare involvement and unplanned hospitalizations, and to increase the quality of life for families while building a bridge between mental health services and other service delivery systems.
FSS/PACE case managers form supportive, therapeutic relationships with families. Building on families' strengths, case managers focus on the development of problem solving skills, mental health counseling, and education for both parents and children about mental illness.
Program History
The FSS/PACE program began in 1995 as an initiative of the Johnson County Department of Human Services (DHS). DHS administrators realized that a substantial percentage of children in foster care placement had parents with serious and persistent mental illness, and that these children were likely at risk for long-term placement. In addition, DHS staff and administrators recognized that they were not well trained to work with adult mental health issues, particularly as they related to parenting. DHS decided that they would benefit from a collaboration with mental health providers in providing services for this population of children and families.
In November 1995, DHS contracted with MCMHC, a local community mental health agency, to create FSS/PACE. Initially, all referrals came through DHS. As contracted, FSS/PACE provided therapy and case management services to both parents and children. Custody was not required. Approximately one-third of the first families served by FSS/PACE had at least one child living 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 DHS goals were often unrealistic realistic for families where a parent has a serious mental illness. DHS and FSS/PACE worked together for four and a half years until January of 2000, at which point DHS funding for FSS/PACE ended. MCMHC became the primary funding source for FSS/PACE.
As a result of these changed, FSS/PACE underwent programmatic changes as well. First, the new budget could accommodate fewer families. Second, custody became a criterion for program enrollment. And, third, referrals came from agencies other than DHS, although long-standing relationships with many DHS workers were maintained, and continue to enhance outcomes for families that are shared by the two agencies. Thus, although the initial collaboration with DHS was not sustained, FSS/PACE was able to gain autonomy as an independent program, advocate more earnestly for families as a result of this independence, and become more focused on parenting rather than reunification issues.
Funding History
Funding for FSS/PACE must be divided into two distinct periods: The period before January 2000, and the period after January 2000. Prior to January 2000, decategorized federal money, channeled through DHS, provided the majority of FSS/PACE's funding. Other funding sources at this time, included a one-time grant from the Alliance for the Mentally Ill, and on-going support from local charities that provided "flexible funds" that could be used for small, "one time" expenses such as overdue electric bills, summer camp, or a home appliance.
After January of 2000, MCMHC became the primary funding source for FSS/PACE. MCMHC's allocated their portion of a federal block grant for adult community mental health services, to FSS/PACE. Overall, funding for FSS/PACE decreased when the contract with DHS was discontinued. MCMHC funding is able to cover staff salaries only. Clinical case management services are funded through third party billing to Medicaid when appropriate (not all case management time can be billed, but because case managers are licensed clinicians and provide therapy as part of case management, much of direct service time can be billed). In addition, FSS/PACE continues to receive money from local charities, including an arrangement to receive consignment shop proceeds from one of these agencies.
Target Population
Prior to 2000, FSS/PACE worked with parents with serious mental illness who were involved with child welfare and had either lost custody of their children or were at risk for custody loss. Since 2000, FSS/PACE has targeted families in which a parent has mental illness but has established custody of her or his children.
Theory and Assumptions
Mission. The FSS/PACE program does not have its own mission statement. The mission of the larger mental health agency is to provide accessible, high quality mental health care in collaboration with other agencies.
Program Goals. The goals of the FSS/PACE program are: "To prevent or reduce child welfare involvement and unplanned hospitalizations by: Increasing the quality of life of the family; providing a bridge between mental health services and other service delivery systems; and, offering mental health interventions in the home.
Theoretical Orientation. First and foremost, FSS/PACE embodies a family-systems/family-strengths model. While the individual needs of parents and children are identified, the family is the unit of attention and intervention; all actions and events are considered within the context of the family. The abilities, not the limitations, of families are the focus of care. Work with families centers around identifying and utilizing their strengths to achieve their goals. Within this family systems/family strengths context, clinical case managers also use psychodynamic and cognitive-behavioral techniques.
FSS/PACE staff establish supportive, unconditional, and therapeutic relationships with families. FSS/PACE act as both therapists and case managers, and both staff and families report that the relationships formed are strong more like family than patient/therapist. The combination of clinical skills and supportive, non-traditional approaches used by case managers creates a unique environment for both clinicians and families; and both parties report that this is beneficial. The long-term commitment between FSS/PACE staff and families makes for a unique caregiver relationship.
Community Context
Local History. Iowa City is a small, metropolitan area with a population of 63,000. Home to the University of Iowa, students comprise a large portion of the population; Iowa City is very much a college town. Small suburbs surround the town, while outlying areas are more rural.
Community Strengths and Weaknesses. Iowa City is rich in cultural resources relative to the rest of the state. It is also a somewhat diverse, politically liberal and tolerant community. Providers and consumers both reported that these qualities decrease the amount of stigma experienced by people with mental illness. However, as is the case in many university towns, there is a shortage of available and affordable housing, especially during the school year. Public transportation is limited. While the city itself is small and accessible on foot, surrounding areas are more isolated and difficult to access without a car. Families also report difficulty finding affordable and reliable child care.
Mental Health Resources. Iowa City is a "mental health town" in that it is abundant in resources. Many persons seeking public mental health care come to Iowa City in search of services not available elsewhere in Iowa. Iowa City has a small, intimate community of health care providers, a situation that reportedly facilitates and enhances collaboration. One area of weakness noted in the local mental health community is a lack of adequate respite services for both adults and children.
Community Collaborators
In 2000, FSS/PACE collaborated with over 60 different agencies to provide case management services to families. FSS/PACE worked in partnership with multiple systems including schools, juvenile justice, housing, mental health, corrections and legal. FSS/PACE also collaborated with various advocacy organizations (Alliance for the Mentally Ill), charities (Goodwill, Salvation Army), after-school programs, Big Brothers/Big Sisters, personal physicians and nurses, insurance agencies, utility companies, summer camps and emergency services.
FSS/PACE coordinates multiple providers around individual families. Collaborators may include MCMHC staff, other community providers such as DHS case managers, school social workers, home care nurses and supported community living staff. Collaborators feel Iowa City has "a case management mentality" - there is an acknowledgement among providers about the need to collaborate with one another. Providers feel their ability to collaborate successfully is aided by living in a small community where providers are familiar and friendly with one another.
Methods of Collaboration
From its origins, FSS/PACE sought out collaborative relationships with other providers. Initially, FSS/PACE staff visited local agencies to describe services and encourage referrals. 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." One nurse stated, "Before FSS/PACE, we could provide for clients, but there was no focus on parenting. Things were disorganized. I felt scared as a provider to watch kids being taken away. Now, working with FSS/PACE, I don't feel the same horror. I don't feel alone. FSS/PACE is the first program to really pull all the players together, around the issues of families."
Providers feel they are better able to focus on their work with families due to the presence of FSS/PACE. "I can be more effective working with families. I can get the information I need and not duplicate services" observed a family liaison counselor from a local elementary school. Other providers also note that FSS/PACE offers a very valuable perspective on the family "in the home" that many providers can not otherwise access. As stated by one of these providers during the site visit, the ability of FSS case managers "to give information about what is going on in the home is invaluable."
While collaborators share referrals and information, funding is not shared. Collaborators feel that DHS, the public mental health system, Medicaid and the school system should all contribute to paying for services for families where a parent has a mental illness. While individual agencies are supportive of working with FSS/PACE, collaborative efforts often can not be billed for, leaving some providers less inclined to collaborate.
Not all collaborations have been positive. Problems have arisen when providers came to the table with their own agendas, or when important stakeholders could not be engaged in collaborative efforts. In particular, among the community collaborators interviewed during the site visit, many felt that child protective services, primary care physicians, juvenile justice and probation were absent from the collaborative process. Community providers identified three critical elements for successful interagency collaboration. First, is an openness to being educated about mental illness. Many providers may be misinformed about what it means to have a mental illness, and how it may and may not impact parenting. They will need education about how to help parents with a mental illness parent successfully. Second, is the need for trust, mutual respect, positive reinforcement, support and a common vision for serving families and providing appropriate services. Third, collaborators felt it was important to acknowledge that one did not have all the answers, and there was a lot to learn from one another.
Agency Context
Mission and Goals. FSS/PACE shares in the mission of the larger mental health agency in which it is located (MCMHC). The mission of MCMHC is "to promote and provide quality and accessible mental health care through an array of accredited mental health services and to work collaboratively with other community entities in the development of services to meet community mental health needs."
Agency Characteristics. MCMHC is a medium-sized, community mental health center with 43 employees, 26 of whom offer clinical and/or direct care services. The agency is funded by federal, state and county dollars and client generated fees. Clinical operations are divided between medical services (with five staff), supported community living (seven staff), psychotherapy (15 staff), and FSS/PACE (two staff). FSS/PACE staff consist of two part-time clinical case managers, one of whom is the program's Clinical Director. Both case managers are licensed clinical social workers. The Clinical Director oversees clinical services to families and is supervised by the agency's Executive Director. MCMHC provides a range of mental health services including counseling and psychotherapy, psychiatric consultation (e.g., medication monitoring and evaluation), in-home family support, intensive psychiatric rehabilitation, supported community living, outreach, psychosocial rehabilitation services, peer counseling for the elderly, emergency mental health care, and consultation and education to the community.
The working environment at MCMHC is friendly, collegial and professional. MCMHC staff emphasize the importance of working in collaboration with one another to providing effective services. Respect for the individual contributions of different providers is critical to the agency's teamwork ethic; "teams leave the professional hierarchy at the door." Agency staff also note that clients feel more confidant in their services knowing that providers trust and respect one another, and are working as a team. Consistent with this philosophy and practice, FSS/PACE staff work closely with other agency staff. 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 (e.g. child therapists) often work collaboratively in service and goal planning and plan implementation.
A family-centered orientation is part of the agency philosophy and is included in the agency's larger mission. This approach is actively promoted and supported by agency leadership and policy. Many MCMHC staff are graduates of the University of Iowa, School of Social Work, where family-systems/family-strengths approaches are the primary theoretical models taught. Most staff at MCMHC believe that working with the family as the unit of intervention is an effective way to provide services. "It's just easier to think about a family." Staff collaborate around families and share information with one another. Staff emphasize the importance of this commitment to family-based work across agency programming, and at all levels of administration and direct service. In addition, MCMHC also has a history of leadership by social workers, which has facilitated a psychosocial and systems approach and response to clients' needs.
Program Model: Services and Interventions
FSS/PACE offers a variety of service. Clinical case managers provide case management, service coordination, psychotherapy, and advocacy for both parents and children. "Clinical" work focuses on development of problem-solving skills, education regarding mental illness, child development, and parenting, and financial planning. FSS/PACE also offers a monthly social/support group for mothers, 24-hour on-call support, emergency assistance, transportation, tenant/landlord mediation, financial assistance, crisis planning, transitional planning (e.g., hospitalizations, foster care placement), housing assistance and referrals to agency and community resources.
Evaluation
Family Demographics. As of May 1, 2000 FSS/PACE had served 48 adults and 68 children aged 0 to 18. Families are racially and ethnically homogeneous. Forty of the 48 adults served have been Caucasian, five have been African American, and two have been Latino/Hispanic. Most often, the mother has been the parent identified with mental illness. However, FSS/PACE has served fathers and single fathers in the past. Since its initiation, approximately half of the children have been between five and 11 years old, and approximately one-third have been between 12 and 18 years.
At the time of the site visit, 12 families (18 adults and 25 children) were receiving services from FSS/CAPT. With the exception of one biracial child, all of the adults and children in these families were Caucasian. Parents and children served by the program tend to be slightly older since funding and referrals changed in January 2000. Currently, three-quarters of the parents are between the ages of 30 and 45, and two-thirds of the children are adolescents (12 to 18 years old), and one-quarter are been between the ages of five and 11.
Most families live in their own homes or apartments; some families receive HUD or Section 8 housing subsidies. All parents have custody of their children.
Diagnoses. The most frequent diagnosis among the parents served by FSS/PACE is Major Depressive Disorder, experienced by a third of participants. Other diagnoses include Bipolar Disorder, Schizophrenia, Generalized Anxiety Disorders, Post-Traumatic Stress Disorder, Dysthymia, and Obsessive-Compulsive Disorder. Some of the children involved also qualify for psychiatric diagnoses. Most common among these are Attention Deficit Hyperactivity Disorder, and Oppositional Defiant Disorder.
CCo-occurring Disorders and Issues. FSS/PACE families experience a variety of co-occurring issues, including poverty, substance abuse, lack of and high cost of housing, trauma and domestic violence. For many families, the issues of poverty and substance abuse are more problematic than the issues related to mental illness.
Family Outcomes. There has not been any formal evaluation of the FSS/PACE program. Interviews with FSS/PACE staff, community collaborators, and families all provide very good anecdotal reports on the program's success. FSS/PACE staff measure success by several explicit family outcomes. These include decreased hospitalizations, decreased child welfare involvement, increased problem solving skills, increased self esteem, increased decision-making skills, increased parenting skills, increased knowledge of child development, increased medication management, increased appointment adherence, increased quality of life, increased self-advocacy, increased confidence in parenting and a positive personality change. Staff say that many, if not all, of these outcomes have been experienced by all families involved with FSS/PACE.
Family participants in the FSS/PACE program identified the following in response to the question, "What are the components of a successful family support program?"
- Having staff that can respond to my needs
- In-home visits
- Knowing there is someone I can talk to and share my ideas with
- Knowing I can talk to someone 24 hours a day, 7 days a week
- Having access to resources and support
- Learning how to diffuse difficult situations
- Improved decision-making skills
- Acceptance of my mental illness
- Learning coping and communication skills
- Having someone to talk to about my kids
- Help with transportation
- Help with paperwork
Client Path
Families come to FSS/PACE in a variety of ways. MCMHC providers (e.g., psychiatrists, nurses, social workers, physicians assistants, psychologists) will identify clients they feel are appropriate for the FSS/PACE program. Referrals also come from external sources, including DHS, the school system and supported community living programs. To be eligible for the FSS/PACE program, clients (the identified parent with a mental illness) must either 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 be adjudicated by Child In Need of Assistance (CHINA), or be under investigation for child abuse or denial of critical care. Finally, clients must be interested in receiving FSS/PACE services and must feel they would benefit from the program.
Potential participants are interviewed by FSS/PACE staff to assess interest and appropriateness for the program. Clients are questioned regarding family history, history of mental illness and treatment (for all immediate family members), substance use, family strengths and resources, finances and treatment plan ideas. Since FSS/PACE is a voluntary program, clients must consent to receive services. Clients and their families are assigned a FSS/PACE clinical case manager. Together, the family and case manager create a treatment plan detailing family concerns, strengths, potential barriers, goals, and possible action plans. The amount and type of contact between FSS/PACE staff and families is determined by the needs of each individual family. FSS/PACE staff and services are flexible, and can be modified at any time depending on the needs of a family.
There is no time limit to a family's involvement with FSS/PACE. Families can stay with FSS/PACE for as long as they need services and have minor children living in the home. Approximately half of the families currently being served have been with FSS/PACE for over five years. No waiting list exists, and the number of families that can be served depends on the intensity of services required across families and the availability of clinical case managers. When families enrolled require only minimal services, it is possible to serve more families. Many families, especially those involved since the program's beginning, require less intense contact, allowing for increased admission of new families. Most families have a minimum of one contact per week, with telephone follow-up.
A Success Story
Terri is a 31-year-old African-American woman who is diagnosed with Schizoaffective disorder. Terri has a history of 75 psychiatric hospitalizations. She was referred to FSS/PACE by DHS, who was concerned about her parenting abilities. Terri was in and out of the hospital, and was emotionally unstable. She was angry, paranoid and did not adhere to her prescribed medications.
At the time of her referral to FSS/PACE, Terri's children, aged six and eight, were living in the home but had a history of foster care placement. Terri had few resources and supports, but expressed a desire to take back control of her life. FSS/PACE worked to advocate for services for Terri. "We worked very hard with Terri. We worked on very concrete ideas." Initially, Terri was in constant contact with her case manager. Through these calls, Terri and her case manager established a trusting and supportive relationship - a crucial component to helping Terri create and maintain a safe and healthy environment for herself and for her children.
It was unclear, however, that even with support from FSS/PACE Terri would be able to be the primary caregiver for her children. Five months after starting with FSS/PACE, DHS conducted an emergency removal of her children. At this time, FSS/PACE worked with DHS to determine what was in the best interest of this family. FSS/PACE wanted Terri to maintain involvement with her children even if she could not be their custodial parent. FSS/PACE successfully advocated for custody to be transferred to Terri's mother. At the same time, FSS/PACE and Terri established other support systems. Terri connected with an outpatient clinic and FSS/PACE encouraged her to attend the local clubhouse psychosocial rehabilitation program. Through her intensive involvement with FSS/PACE, Terry began treatment for a previously diagnosed brain injury. Terri also began to receive employment services, and returned to the work world. After 24 months in foster care, DHS transferred custody of the children to Terri's mother. Shortly thereafter, Terri's parental rights to her daughter were terminated.
Despite the loss of child custody and parental rights, this is a success story for many reasons. Terri, who had been frequently hospitalized and treatment resistant prior to FSS/PACE involvement, had stayed out of the hospital and was working effectively with a treatment team. Terri established a supportive relationship with her FSS/PACE case manager and developed a network of support services. Terri was able to have her children as a part of her life in the only way that she could. This illustrates that FSS/PACE works for the best interest of the family. When it became clear that it was not in the best interest of the family for Terri to be her children's primary caregiver, FSS/PACE facilitated another way to keep the family together, while providing necessary supports and safety for both mother and children.
Challenges
Stigma is a huge challenge for both FSS/PACE and for the individual families with whom they work. FSS/PACE staff need to educate the community, including schools, 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. Co-occurring problems, such as poverty and substance abuse, also provide great challenges for FSS/PACE and families. Finally, FSS/PACE is challenged in getting all relevant collaborators to the table to support and coordinate care for families where a parent has a mental illness. Service gaps in the community include lack of housing, limited respite care and insufficient public transportation.
What is Missing from FSS/PACE?
Families felt nothing was missing from FSS/PACE. One mother stated, "The perfect program looks like FSS/PACE." FSS/PACE staff report that resources are lacking to serve all of the families in Iowa City that might benefit from their program. Narrowing the focus of whom to serve (i.e., only families with custody of their children and without involvement of child protective services) has enabled FSS/PACE to "streamline" their efforts and deliver services more effectively. However, there are still many families that they can not reach with only two part-time social workers. Serving more families would require an increase in funding, resources, and collaboration with providers in the community.
Next Steps
There are not currently any program changes for FSS/PACE. They are adjusting their program to the new funding and referral structure (i.e., no DHS funding), and tailoring the program to work only with parent that have custody of their children. FSS/PACE hopes to continue to meet the program goals and objectives and MCMHC's mission.
In addition, specific goals for the future include: Continuing the monthly mom's social/support group, developing a budget club to assist with families' financial concerns, creating a monthly FSS/PACE newsletter for families, and establishing a FSS/PACE resource library.
Quotes from Families
"It was important to know there was security in the services, that you could contact FSS/PACE when you needed to. This felt most helpful to the kids."
"The kids felt they could call Kit (FSS/PACE case manager) in crisis situations. The kids benefited from knowing there was someone they could call."
"Before FSS/PACE, everything was at a great distance. Now, things are at arms-length. It's easier to access things with FSS/PACE."
"FSS/PACE helped me learn how to communicate with my spouse."
"I've been able to make friends easily now. This was something I was never able to do before. This is because of my daughter. She gives me hope, someone to care for. My daughter makes me want to stay well and be healthy."
"Without Kit? I don't even want to think about it! She helps me to talk about my kids, with my medication, making phone calls, paying the bills, filling out paperwork and problems with the kids."
"I've figured out what makes me nervous and tense. I'm better at knowing what I need to do to feel ok."
"Nothing [is missing from FSS/PACE]. If I'm having problems it really helps, takes a lot of the stress off. I don't have a lot of bad days but when I do, Kit is there."
"When I need a little help, she gives a little help. When I need a lot of help, she gives a lot of help."
"My kids don't look at me like a crazy person anymore."
"The program is a god-send to me and my family."
"I don't know of any other program that comes into your home for people with mental illness and their families."
"I never thought 10 years ago I'd be where I am today."
Logic Model: Family Support Services/Parents Advocacy Coordination Education (PACE)
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