Steps Toward Evidence-Based Practices for Parents
with Mental Illness and their Families
Children and Parents Together (CAPT)
Commack, NY
Program Description
The CAPT Center provides a community support system for parents with mental illness, along with an early intervention program for their young children. Located in Commack, New York, the CAPT Center is a program of the Family Service League of Suffolk County, Inc. The primary goals of the CAPT Center are to help adults with mental illness to fulfill their roles as parents, and to promote healthy growth and development in their children.
Mothers and their children participate in CAPT Center two to three times a week, depending on the child's age. Children ages 0 to 3 attend an infant/toddler program two days a week; simultaneously their mothers attend a mother's support group. Children ages 3 to 5 attend a preschool program three days a week while their mothers attend the support group. CAPT also offers a once-weekly group for parents whose children are in foster care, and a "graduate" group for parents whose children are in kindergarten and beyond, and a father's group. The infant/toddler and preschool programs are educational programs designed to foster the child's development. The mother's support groups address a range of needs.
Program History
Advocacy efforts in NY State in the mid-1980's resulted in the NY State Legislature setting aside money for services to address women's mental health needs. An RFP was issued by the NY State Office of Mental Health, and $600,000 was earmarked to fund four therapeutic nursery programs in the state. The Family Service League of Suffolk County responded to the RFP, and the CAPT Center program began in 1987.
Although initially funded as a therapeutic nursery, the staff feel this was a "misnomer" from early on. The program quickly evolved to more fully meet the needs of the parents (primarily mothers) with metal illness whose children attended the nursery program.
At the time of the site visit, CAPT was located in a neighborhood school building with other community programs. The staff emphasized the positive impact of this "normalized" setting. In the year after the site visit, CAPT was relocated to a Family Center in Bay Shore, NY (another community nearby) that provides other family mental health services. According to the program director, this change has negatively impacted the "normalization" so appreciated in CAPT's prior location.
Funding History
The CAPT Center was initially funded in 1987, as one of 4 therapeutic nursery programs in the state (in response to the RFP described above). The program received funding for three years. When this funding ended, the funding from OMH was reduced considerably, but the parent agency, Family Service League of Suffolk County, picked up the cost of the program, with the use of Medicaid "re-investment" dollars. The funding of the program has remained level for the past 10 years, and thus has eroded secondary to inflation. The funding erosion has resulted in a reduction of services over the years.
Target Population
The CAPT Center serves women with mental illness who have at least one child age 4 or under, or who are pregnant. The program serves approximately 30 children across the three classroom programs (two infant/toddler and one pre-school), with 10 children in each class. This number is flexible however, depending on the needs of the families being served. The program will always accommodate an additional child of a mother already being served. Children in the program range from age 0 to 5. Most of the mothers served by CAPT have custody of at least one (but not necessarily all) of their children. The program provides supervised visit services for a few families.
Theory and Assumptions
Mission. "CAPT strives to empower parents with mental illness and their children to obtain optimal health in all aspects of their lives. CAPT works to educate parents to function better in their personal, family and community lives. CAPT works to educate children to achieve optimal growth and development."
Program Goals. The CAPT Center identifies specific goals for both mothers and children. For mothers, the CAPT Center strives to 1) foster rehabilitation and normalization; 2) prevent hospitalization; 3) reduce isolation and promote socialization; and 4) enable the fulfillment of the parental role. For children, the CAPT Center strives to 1) promote health growth and development; 2) prevent or remediate development delays, physical or emotional problems; and 3) prevent unnecessary foster care.
Theoretical Orientation. Although CAPT was initially funded as a therapeutic nursery program, the orientation of the program evolved fairly quickly in response to the needs of the clients served. The program staff recognized early on that the needs of parents for support and skills training had to be addressed. In the late 80's and early '90s, The NY State OMH developed statewide guidelines for outpatient services that reflected a psychiatric rehabilitation approach (Anthony, et al). Specifically, the guidelines stated that the mission of services should be "to assist persons disabled by mental illness to be successful and satisfied in obtaining and maintaining the specific community environments and roles in which and through which they have chosen to live their lives." The guidelines further stated that "this mission is accomplished by assisting disabled individuals to develop the functional skills and environmental supports needed to choose and obtain a new life role and setting, or by making skill and support changes needed to maintain an existing role and setting". The CAPT Center staff felt that this mission statement reflected the work that they do with clients.
Consistent with a psychiatric rehabilitation approach, the program reflects a family-centered and strengths-based philosophy. The program encourages mutual support among the participants, "normalized" involvement in adult roles, and the pursuit of overall health and wellness for family members. Other important program values articulated by CAPT providers include being flexible, consistent, non-judgmental, hopeful, and pragmatic in helping families solve day-to-day problems in living.
Community Context
Local History. Commack, NY is a small city located in the center of Long Island, in Suffolk County. Over one million people live in the county. Suffolk County is also large in area, spanning 100 miles end-to-end. Many communities in this part of Long Island are characterized by "suburban sprawl."
Community Strengths and Weaknesses. Suffolk County has a wide range of mental health services. The community lacks affordable housing and has limited public transportation. In addition, affordable childcare and training and education services for low-income individuals are limited.
Mental Health Resources. While mental health services are available throughout the county, the lack of public transportation means the services are often inaccessible for families with limited resources. Also, the size of the county means that services are geographically dispersed - again, making access difficult.
Community Collaborators
CAPT collaborates with many other health, mental health and social service program and providers in the area, including the Department of Social Services, Public Health Nurses, a homeless program, Child Protective Services, and the local alliance for the mentally ill. CAPT also interacts with the Social Security Administration, public assistance, early intervention and the local school system. In addition, as part of FSL, CAPT interfaces with the larger agency. However, many of the services provided by FSL are not easily accessed by CAPT families because they are not close by.
CAPT belongs to the local Service Area Council (SAC). The SAC is comprised of agencies in the area that provide mental health services for adults and children. The SAC meets monthly to keep each other apprised of issues confronted by each agency, changes in agency services, funding or staffing. Although these agencies do not have any formal collaborative agreements, the informal connections enhance the working across the agencies.
The CAPT Center has an Advisory Board made up of representatives from the Office of Mental Health, the Department of Public Health, the Child Protective Services, a local housing program, legal services, children's services, and the FSL. The Advisory Board helps the program overcome barriers, advocate with legislature, access resources, and interface with other providers in the area. At the time of the site visit, the program had lost its lease on the space in the school building and was getting ready for a move to a new location. The Advisory Board had been actively involving in helping the program find a new site in another part of the county.
Methods of Collaboration
Collaboration across provider agencies primarily takes the form of receiving and making referrals. There is no sharing of dollars across agencies, or payment from outside agencies for CAPT services. Other providers and agencies in the area feel that CAPT fills an essential gap in services in the area. No other agency provides the services and the safety net to families that CAPT provides.
Agency Context
CAPT is a program of the Family Service League (FSL), a non-profit, non-sectarian, multi-service agency. The FSL is one of the largest and most comprehensive agencies providing services to adults, children and families across Long Island. Services include counseling and other mental health services, elder services, Clubhouse and supported employment programs, dental services, youth programs, substance abuse services, advocacy and referral, debt counseling, and volunteer services.
The annual budget for the CAPT Center is $160,000. Less than 20% of the program budget comes from the NY State Office of Mental Health, via Suffolk County. Additional funding for the program is provided by the FSL. FSL receives funding from multiple sources, including State/County, Federal, Local dollars; foundations; Medicare and Medicaid; HMOs and other third party payers; and out-of-pocket payment by clients. The program also receives donations from local businesses (e.g. Federal Express) and from charities such as Salvation Army and the local food bank.
The CAPT Center is staffed by two master's level social workers, one teacher with a BS degree in early childhood education, and one certified pediatric nurse practitioner, who directs the program. There is also a program secretary, who is the only full-time employee. The social workers and teacher are paid on an hourly basis. The nurse/director is a 20-hour per week salaried employee. The Center often has social work and education interns. Although the staff all have distinct job descriptions, they describe their roles as being very flexible. They emphasize that they often need to improvise and always "start where the client is at". As a team, they work together to "do what needs to be done".
Program Model: Services and Intervention
The core component of the services offered by CAPT is the parent support group that co-occurs with the infant/toddler or preschool education groups. The two infant/toddler groups take place on Tuesdays and Thursdays -- one group runs from 10:00 am-noon, and the second runs from 1:00-3:00 pm. The preschool group runs on Mondays, Wednesdays and Thursdays from 10:00 am-noon. The foster care group runs on Wednesday afternoons, and the graduate group runs on Friday afternoons.
Within the context of the parent support groups, many issues are addressed. Broadly, these issues may include education on illness management, on understanding the impact of illness on children, and on normal child development; parenting skills; social skills; basic community living skills such as money management or using transportation; support around difficult relationships; accessing entitlements and supports; and advocacy. Outside the group, staff typically visit mothers at least once at home to get a sense of the home environment. They also sometimes accompany mothers in the community to help them access entitlements, housing, food stamps, etc, but their ability to do this is limited. The staff function as case managers, and frequently refer mothers to other providers for services the CAPT program cannot provide. The staff describe themselves as doing whatever needs to be done. As one provider stated, "You never know what you'll be asked to do".
Within the infant/toddler and preschool groups, activities focus on enhancing the children's social and emotional development, language and cognitive skills, gross and fine-motor skills and behavioral management. The preschool program also focuses on pre-academic skills and preparing children for kindergarten. All parents spend some portion of their time at the center with their children in the infant/toddler or preschool classroom. In this setting, the staff are able to model positive interactions and caretaking, and are able to coach parents in appropriate ways to play with their children, to set limits and to manage behavior.
Transportation (via taxis) is provided by CAPT to families that have no other means of getting to the program.
Mothers describe the program as giving them the opportunity to meet with other mothers, get advice and support, and get a respite from taking care of their children. Some mothers expressed feeling frustrated that they have to "graduate" from the program when their children enter kindergarten. Although there is a graduate group that meets weekly, some mothers feel this isn't enough.
Evaluation
Family Demographics. At the time of the site visit, the center had 63 mothers and children on their caseload. Nine mothers have children in foster care; a few have had children who have been adopted by others. About 22 to 24 mothers are served by the infant/toddler or preschool programs. The foster care group serves about 9 mothers, and the "graduate" group serves about 6 mothers. At the time of the site visit, the program was serving only one father. The average age of the mothers served by the center is 26; mothers range in age from early 20's to 40's. The program serves very few teen mothers.
Between 60 and 70% of the mothers are Caucasian; approximately 25% are African-American, and the rest are Latino or Asian. The majority of mothers have less than a high school education. Most of the mothers are receiving disability (SSI/SSDI) or welfare benefits. Many mothers previously served by the program who had been welfare recipients have gone back to work, following welfare reform. Only a few of the mothers currently served by the program are working. The staff describe this current group of mothers as "a very disabled group".
Diagnoses. Between 50 and 60% of the mothers served by CAPT have a diagnosis of major depression. Other diagnoses include schizophrenia, bipolar disorder, obsessive-compulsive disorder, post-traumatic stress disorder and personality disorders. The majority of mothers have experienced at least one psychiatric hospitalization and most are on medication.
The staff estimates that at least 50% of the children have "mental health needs". Common problems exhibited by the children include isolation, poor socialization skills, speech delays, increased (or decreased) activity level, and difficulty engaging in the normal range of age-appropriate play activities.
Co-occurring Disorders and Issues. About 30% of the mothers have a history of substance abuse. Virtually all of them have a family history of substance abuse. As well, virtually all of the women have a history of trauma or domestic violence. A few of the mothers live in their own homes or apartments with spouses or partners. Others live with their parents, in residential programs, in rooming houses or in shelters. At the time of the site visit, none of the mothers were living alone with their children. Many of the families served by CAPT have unstable housing, and adequate, affordable housing is a significant need. Between 20 and 30% of the mothers have experienced homelessness. In addition, many mothers need help with homemaking skills.
Family Outcomes. The CAPT Center does not undertake any formal outcomes evaluation. However, the staff is able to identify outcomes that they feel characterizes a "successful" family. Positive outcomes for mothers include:
- An increased understanding of child development and "normal" child behavior
- Improved parenting skills
- Decreased anxiety and increased confidence as a parent
- An enhanced social network and decreased isolation
- Taking responsibility for managing illness
Positive outcomes for children include:
- Improved social and communication skills
- Improved motor and cognitive skills
- School readiness
Client Path
Mothers are referred to CAPT from a variety of sources, including clinicians and case managers, public health nurses, child protective services, housing programs, programs that serve children with disabilities, and the local school system. Some mothers are self-referred. To be eligible for the CAPT program, mothers must live in Suffolk County, be in treatment with a mental health professional or have a case manager, have at least six months of sobriety and have a child under the age of 5 or be pregnant. Most mothers served by CAPT have a major mental illness.
Before a family is seen face-to-face, basic information such as name, address, and telephone number are taken over the phone. During this initial phone contact, staff also try to get a sense of mothers' mental health concerns and/or diagnosis. The first face-to-face appointment is usually made within a week of referral. Both mother and child(ren) are seen at the first appointment. Generally, the mother is seen by the nurse or social worker. During the first appointment, the primary goal is to make the mother feel comfortable.
A general history is taken, including family history, housing status, health status, personal history of mother and partner, and mental health history including past hospitalizations, drug and alcohol use, and medications. However, the staff report that they do not expect to get a complete history at the first appointment; often a complete history only emerges over time, and. The mothers are given a tour of the facility, including group meeting rooms and the classroom. The CAPT staff emphasize the importance of meeting each mother "where she is at".
At the first appointment, the early childhood educator sees the child. A formal evaluation is not usually done; instead the teacher spends time with the child in the classroom to informally observe how the child interacts both with people and with materials in the classroom. On rare occasions, a developmental screening assessment (e.g. the Denver) may be administered.
If the family meets criteria, the mother is invited to participate in the appropriate group. At this point, the mother is asked to sign a "contract" stating that she agrees to attend regularly and will notify the program if she is going to be absent. The attendance policy states that after three consecutive unexcused absences, the mother's place will not be held. However, this policy is not always enforced; the CAPT staff do a lot of outreach to keep mothers engaged.
At some point during the initial involvement in CAPT, staff try to visit every home at least once. They describe this as having a chance to assess the home environment in terms of safety, general home maintenance, whether the family has furniture and other materials good (e.g. beds, toys, books, food, clothing) that children need. This also gives the staff an opportunity to observe the mother and child in their "natural" environment and to have a chance to do individualized parent skills teaching.
Mothers can continue in CAPT until their child enters kindergarten. Several mothers with multiple children have remained involved in CAPT for many years. After children move into kindergarten, mothers can continue to participate in the graduate group.
A Success Story
The CAPT staff told the story of N and her family. N is a Latino woman in her early 30's. N was referred to CAPT by a public health nurse several years ago after the birth of her first daughter, T. At the time of T's birth, N was a client in a community residence. After the birth, N moved into an apartment with the baby's father, J. N has a diagnosis of borderline personality disorder. N and J met when they were both clients in a sheltered workshop. Both parents have cognitive limitations; the staff reports that N cannot read. After two years, a 2nd daughter, C, was born. The staff describe this as a significant increase in stress for this vulnerable family. Although they describe N as an excellent housekeeper, they note that she lacks basic knowledge about child development and typical child behavior. The father, J, has even fewer parenting skills than N. J continues to work in a sheltered workshop.
When the 1st daughter, T, was about 4, there were two incidents of N hitting T. Both incidents were reported to Child Protective Services. Both daughters were removed from the home, and were placed in foster care with a family member. During this period, N remained involved with CAPT, attending the foster care group.
After two years in foster care, the children were returned to the parents. CAPT staff describe CPS as very supported. This time, the family seems to be doing better. N seems very invested in keeping custody of her children. The staff report that N is more willing to learn from staff and to follow the recommendations they give on child management issues. CAPT staff describe their work with N as "re-parenting". The work with N and J is very much around managing the day-to-day demands of parenting. Currently, T is a 7-year-old in 1st grade, and C is a 5-year-old, who will enter kindergarten next year.
Despite their success in reuniting N and J with their daughters, the staff feels this family still faces challenges because of the lack of resources and supports in the community. While they feel that they have a secure and trusting relationship with N, they see needs for this family that they can't meet. N would benefit from additional in-home supports. She could use assistance around stressful time during the day, such as early in the morning as the children are getting ready for school, dinnertime and bedtime. N could also use additional skills training in community living skills such as money management and cooking. She and J would also benefit from periodic respite care.
Challenges
Many of the mothers and children served by CAPT are isolated in their communities -- their primary social ties are with CAPT providers and other clients. Poverty, inadequate housing, the lack of public transportation and the limited training and education opportunities for these mothers serves to perpetuate the isolation.
Teen mothers and mothers with active substance abuse problems have been difficult for the program to engage.
CAPT staff report that serving families after they graduate is particularly challenging. CAPT has tired to have a graduate group for children, but this was difficult to schedule and fund. CAPT staff feel that children age 8 and older need the opportunity to talk about their experiences with mental illness, but virtually no services are available for these children. In addition, many mothers felt uncomfortable with a discussion of mental illness taking place in a children's group.
The fact that CAPT has been level funded since its inception means that services have needed to be cut back. For example, initially the preschool program ran 4 days a week, but now only runs 3 days.
The lack of funding means that staff cannot provide all the services they recognize that families need. They have very limited ability to provide home based services, they cannot fund respite services for parents, and the program does not run in the summer. They acknowledge that every summer they lose track of a few families.
Next Steps
At the end of the summer 2000, the CAPT Center will relocate to new facilities in Bay Shore, NY. The staff express concern about the move for two reasons. The program currently is located in a school building in a residential neighborhood. The new facilities will be at a site where other clinical services are offered. The staff are worried that mothers may not feel as comfortable in the new location as they have in the school where there is not stigma attached to attending. In addition, they are concerned that some families will be "lost" because they will not want to travel the distance to the new program.
Quotes from Mothers
"My children and I attended the program for three years. During that time I learned about my mental health…and was able to build a support group with the other mothers, one of which I am still friendly with. Our children have also been supportive of each other over the years. The program allowed me to get out of an abusive relationship, become employed and enter college. My children are doing well. We continue to work on future goals as a family".
"When our kids go to kindergarten, you put us out by the garbage pail."
"I have no place I can go and be myself, except here."
"Mary and Evelyn have brought me up to be a good mother."
"The program helps you get on your feet. It keeps you aware of what you're gonna do wrong. What you learn from Mary and Evelyn gives you knowledge you need to take care of yourself cause then you can take care of your children."
"I still need the support. Sometimes agencies back out before you're really ready. You gotta do it slow and easy."
"You find out you're not the only one. Other mothers have gone through the same thing. Hearing about people getting their kids back give you hope."
"Mothers get "hooked" because they want better things for their children (CAPT director)."
Logic Model: Children and Parents Together
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