Supporting Families through AIA Kinship Caregiver Demonstration Programs

In the fall of 1997, the Children's Bureau of the U.S. Department of Health and Human Services' Administration for Children and Families, funded three kinship caregiver demonstration projects through the Abandoned Infants Assistance program. All three programs, located in New York, Connecticut and New Mexico, provide services to families in which relative caregivers are raising young children affected by substance abuse and/or HIV. The following overview of the AIA kinship caregiver programs illustrates the struggles faced by these families, and it describes the different strategies each program is using to address the needs of relative caregivers, the children and their parents.

Yale Support Program for Family Caregivers

The Yale Support Program for Family Caregivers, located in New Haven, CT, uses federal AIA funding to respond to the broad-based needs of grandparents and other relatives who have assumed the responsibility of caring for HIV or drug affected children who can no longer be cared for by their biological parents. The program is designed to increase the stability, safety and permanency for children who have experienced parental loss through death or pervasive parental drug addiction. Each child's deep psychological and developmental need for sustained attachment to his/her extended family, and on-going connection to his history, culture and community, underscores the importance of providing support, counseling and concrete services to the adults who attempt to nurture children whose parents are not available to them.

Steering Committee

One of the initial activities of the Yale Support Program for Family Caregivers was to establish a program Steering Committee. Membership on the Committee includes two grandmothers who are providing care for their orphaned grandchildren, representatives of the state Department of Children and Families (child protection and foster care) and the state Department of Social Services (entitlements, Section 8 and other housing programs), an independent child advocate/lawyer, the program evaluator, a staff clinician, the program coordinators, and the section director.

The Committee was conceptualized as a forum in which to assess and address barriers to permanency for children in relative care, identify and commit appropriate resources to improve outcomes for both children and families, and seek creative interagency solutions to problems as they arise. Within a very short time, the Steering Committee has become an essential program element. The grandparents, who were recruited from the Family Support Service caseload to serve on the committee, are vitally important resources. Their presence ensures that the professionals hear directly and powerfully about the issues that most effect their ability to provide consistent and stable care. This information has already helped to identify key problem areas, set priorities, and inform some public funding decisions.

Program Components

The specific service components of the Yale Support Program for Family Caregivers include: in-home and community-based mental health and case management services; child evaluation and assessment; and concrete services such as facilitated access to community health, mental health, legal, welfare, housing and educational services. A clinician/family support worker team provides the in-home, relationship-based services. Bi-weekly, community-based peer support groups, facilitated by program staff, address the needs of relative caregivers.

Although these interventions have been available to HIV and drug affected children and families at the Yale Family Support Center, this program is designed to meet the specific needs of grandparents and other relatives for whom the responsibilities of active parenting are unexpected and untimely. It is precisely because the resumption of parental duties later in the life cycle requires significant changes in life style and expectations that an array of supportive services are essential to the stability and maintenance of children in placement with grandparents and other relatives. The relationship established by the in-home team is a source of support to caregivers and provides a safe means to explore these feelings of ambivalence and frustration with the role they have assumed. Loss, the mourning process, anger and guilt together with concrete problems of income, housing and legal custody are all issues that further complicate the care-giving process for both the child and the caregiver and threaten to disrupt the child's placement. Services that address the complex needs of both caregivers and children can assist caregivers to provide the sense of permanency and belonging that is essential for healthy child development.

To ensure that the caregivers receive what they need from the peer support group, program staff held focus groups in which they encouraged caregivers to identify their needs and consider the ways in which a support group might address them. While the need for more money and larger living spaces were clearly expressed, the most pressing wish was for a safe place where they could voice concerns, talk with other relative caregivers, receive support for the efforts they were making, and feel appreciated for the responsibilities they had assumed. Some of the specific issues raised by the group during its regular luncheon meetings have included: boundary setting with substance abusing adult children; identifying strategies for dealing with systems that caregiver families find intimidating and disrespectful; and the exhaustion of caring for children who have been exposed to considerable stress. In addition, the group has discussed the absence of time in which to attend to their own needs, and the loss of their independence and freedom. Since the group's formation, it has become evident that the peer support offered to group members has led to positive changes in almost all of their families.

Case Illustration

The following scenario illustrates the considerable difficulties that grandparents and other relative caregivers encounter in their struggle to provide appropriate care.

Ms. H is a 56 year-old, African-American woman caring for five of her grandchildren. Her daughter, T, is actively using drugs and has been unable to remain in drug treatment. When T's youngest child tested positive for cocaine after delivery, the child protective service agency took legal custody of the child and placed her with Ms. H as a relative foster home. Ms. H. was already providing care for her daughter's four older children ages 18, 14, 5, and 3. Recently, the eldest child left for college. Although her matriculation was a happy occasion for the family, she had been a major help to Ms. H, providing childcare and hands-on assistance with the younger children in the home.

When Ms. H was referred to the Yale Support Program for Family Caregivers, she was immediately receptive, accepting in-home services as well as an invitation to become an active member of the caregivers support group. At that time, Ms. H described herself as "tired"-physically and emotionally exhausted by the responsibility of caring for four children. Although she has family in the area, she does not feel supported by them and finds involvement with them particularly stressful.

Ms. H also struggles with her feelings about her daughter, T. She finds her lifestyle and lack of responsibility offensive, and consequently is unable to welcome her into her home. The disapproving and angry relationship between Ms. H and T has become particularly problematic for T's 14 year-old daughter who said, "I just want them to get along" during a recent family session.

In addition to the individual work with Ms. H and weekly family sessions, Ms. H has sought help with her concrete needs. Ever since Ms. H's grandchildren came to live with her, she has been caring for them in an attractive, one-bedroom apartment that gave her considerable pleasure. However, she recognized that the children needed more privacy then was available to them and that a larger apartment might help to relieve some of the problems that were beginning to arise. The situation was presented to the program's Steering Committee in the hope that the committee could expedite a rent subsidy for Ms. H. The protective service agency was able to obtain a Section 8 certificate for her, and the in-home team assisted in her search for appropriate housing. Unfortunately, the certificate had certain specific time constraints that Ms. H experienced as burdensome. Even with the support of the team, Ms. H was unable to find suitable housing within the time she was given.

The working relationship that had developed between Ms. H and the in-home team made it possible for supportive counseling to focus on Ms H's ambivalence about moving and her reaction to the time limits imposed by Section 8. Through treatment, Ms H has come to accept how isolated from familial support she feels and how difficult it is for her to parent her grandchildren alone. She has decided that she would like to move out-of-state so that she and the children could be closer to relatives who she feels would be able to help her. At this time, the team is working with Ms. H to assess whether this plan could indeed offer permanency for the children and an important system of support for her.

Project Return's Family Support Services
Program

Project Return Foundation (PRF), located in New York, NY, is a multi-faceted human services agency with over 25 years of drug treatment experience with homeless men and women, women with coexisting mental health and substance abuse problems and their children, battered women and their children, and persons with HIV/AIDS. Established in 1997, PRF's Family Support Services Program (FSSP) uses federal AIA funds to support caregivers of infants and young children at-risk for abandonment by establishing mutually nurturing relationships between the caregiver, the child(ren) and the child's parent who is in PRF residential drug treatment.

The Caregiver

In contrast to the Yale program many caregivers in FSSP are providing temporary care for children who have plans to reunify with their parents. FSSP's ultimate goal, therefore, is to support caregivers in order to simplify the process of reunifying the parents and their children.

The relative caregivers involved in FSSP struggle with doubt, fear, and frustration as they try to rebuild trust with the parents of the children in their care. Enabling and co-dependency are common methods family caregivers use to cope with their struggles. Often these caregivers take on more than they can handle. As they become burdened with more responsibilities, the children for whom they are providing care suffer from the consequences. Additionally, their family histories often present major obstacles and triggers that do not exist for non-kin caregivers.

The Parent

The FSSP serves 40 families involved in two of PRF's residential treatment programs. Thirty-five of the families participate in the Starhill Therapeutic Community, a 6-12 month residential treatment program for men and women. Many children of these individuals reside with relative caregivers while their parents are in treatment. The remaining five families are from the Dreitzer Women and Children's Treatment Center, which provides residential treatment for women (who have a history of mental illness and substance abuse and are at risk of homelessness) and their children (newborn to three years old). The mother-child dyad resides in this program for 12-24 months. Older children often reside with relative caregivers.

All the parents in both programs are in the early stages of recovery and have not had the opportunity to explore the mental, physical or spiritual aspects of addiction. Weekly groups and individual assignments help the parents deal with their anger, fear, shame, guilt, self-esteem, and their spirituality.

Additionally, FSSP has actively sought fathers to participate in the program. This has presented a unique range of issues related to machismo, battering, being a non-custodial parent, fathering in a "blended family," and other basic issues of fatherhood. To address these issues, FSSP formed a Fathers' Group, called the Joseph Project, to assist male clients in exploring their unique issues. The group also assists participants in identifying positive aspects of their own fathers that they would like to pass on to their children. The men who have participated in the Joseph Project have become more pro-active in bonding with their children and working with their children's mothers toward reunification.

The Child

FSSP provides a range of services for the children of parents in the residential treatment programs. Whether these children were exposed to neglect or abuse, the foster care system, or simply very poor parenting, they often have low self-esteem and depression and are socially isolated. They may blame themselves for their parents' difficulties. Many are angry about their parents' behavior before treatment; others are angry that their parents disappeared from their lives to get treatment. They generally have trouble managing anger and developing trust. They suffer reality distortions because of their parents' inconsistencies, and they frequently have impaired social and emotional skills. Most of these children feel estranged from their parents if and when they are reunited, and they are not prepared for their parents' return as changed individuals.

To address their anger, isolation and depression, and to help children develop trust for a successful reunification, FSSP provides early intervention through assessments, family therapy, and age appropriate groups. The program also offers activities for the parent-child-caregiver triad. This has included a kick-off event; visits to the local library, the community art museum and community college; and a picnic. These events have been successful in allowing the triad to interact and develop positive relationships.

Challenges

One of the biggest challenges for FSSP has been defining the client. The program was designed to serve relatives caring for children of parents (typically mothers) involved in one of PRF's residential treatment programs. In some instances, the caregiver may choose to participate in the program, but does not wish to re-engage with the parent, a PRF client. It has also been a challenge working with fathers who want to reunify with their children but not necessarily with the children's mother.

To help facilitate the reunification process and mend family relationships, the Family Program at Starhill Therapeutic Community runs a family day when friends and family of the residents are invited to the facility for a two-hour program explaining how treatment works. Families who attend can participate in a support group for families. This program helps identify the needs of caregivers, and helps the caregivers better understand what the parents (often their children) are experiencing. At the same time, the residential treatment programs help to remove obstacles that often sabotage parents' efforts at reunifying with their children.

Los Pasos' GRO Project

Since 1990, the Los Pasos Program in the Department of Pediatrics of the University of New Mexico (UNM) in Albuquerque, NM, has been funded by the Children's Bureau through the Abandoned Infants Assistance (AIA) Program. Its original focus was the care of prenatally drug-affected young children and their mothers. As the years progressed, staff found that oftentimes relatives, and more specifically, grandparents, were assuming the caregiving tasks for the children in the program. Not only did this caregiver group require special social and emotional support (i.e., they were feeling responsible for a vulnerable grandchild and guilty or angry that their own child was incapable of providing this care), they were burdened with having to address legal custody issues in order to receive benefits and medical care for the child and to master an ever-changing social welfare service system. Further, they had to learn how to care for a child with special medical and developmental needs when their own health might be failing, and to adjust to a life that now included childcare responsibilities in addition to retirement planning. In an effort to address these growing concerns, Los Pasos staff initiated the GRO (Grandparents and Relatives Outreach) Project in 1997.

Unique Program Features

GRO provides legal, medical and social services specific to the needs of grandparents. Its unique program features include: (1) legal computer-generated prototypes, developed through a collaboration at the UNM's Law School, for guardianship and Power of Attorney; (2) portable laptop computer that enables the case manager to generate these legal documents in the relative's homes; (3) a family practice medical clinic that is specifically focused on the grandparents' health care; and (4) home visits by a case manager, a developmental specialist, and a solution-focused specialist. In addition, the children receive well-baby medical care and developmental follow-up through the Los Pasos organization.

Assessments

In an effort to identify the specific needs and conditions of families served by GRO, the project has developed two instruments: (1) a Risk Assessment, which considers child safety factors, and (2) a Legal Needs Assessment that looks at custody and visitation status, domestic violence and immigration. In response to findings from the legal needs assessment, GRO's law consultant is seeking legislative reform to enable grandparents to petition for guardianship in the state of New Mexico.. The developmental specialist and solution-focused specialist are in the process of planning a grandparent group that will focus on parenting in a developmentally appropriate manner.

Solution-Focused Approach

GRO's approach is based on the solution-focused philosophy that builds upon grandparents?successes by making use of what they are already doing that works. The following illustrates this approach. Mr. and Mrs. M had been raising Mr. M? grandson, J, since birth because Mr. M? daughter was unable to care for him due to her drug and alcohol abuse. When the case worker asked Mr. and Mrs. M what they had done with J that was helpful, each had an example. Mrs. M noted that they have him on a schedule with a very consistent routine regarding bedtime, naptime, and snacks, which helps keep him calm and happy because he knows what to expect. Mr. M revealed that he gets on the floor and wrestles with J, kisses him on the forehead, and tells J he loves him. Although different, these are both successful approaches that the family and the caseworker can draw on when they face difficulties as J develops. Asking about and emphasizing their competencies is far more helpful than focusing on why they think Mr. M? daughter "went bad".

Conclusion

The three AIA kincare demonstration projects have adopted very different philosophical orientations and service approaches to meeting the needs of relative caregivers and their drug- and HIV-affected families. As this population continues to grow in number, more child welfare and community-based agencies are being forced to expand or restructure their services to address the unique situations of these families. Ongoing evaluation of the AIA demonstration programs will provide more information on effective strategies in the coming years.

© © 2003 National Abandoned Infants Assistance Resource Center.