Partnering with Parents and Caregivers
When essential resources for children align, as in Project Connect, communities are able to support families with complex needs. When parents and caregivers, communities, and agencies each play a part in meeting children's needs, keeping children safe, and maintaining child connections to familiar people and places, together they can share solutions and strengthen families.
When services are family-centered, families are included as equals in decisions about their children's programs and treatment plans. When they work as partners, professionals and family members show mutual respect for each other's knowledge and skills. They communicate honestly and clearly and show understanding and empathy for each other. They share in planning and decisionmaking and work together to agree on goals. They share information, are accessible and responsive to each other, and jointly evaluate progress. Labeling and blaming are absent.
Project Connect is a wraparound family support service of the Massachusetts Society for the Prevention of Cruelty to Children (MSPCC), serving families in 26 communities throughout the Boston metropolitan area. Through Project Connect, local interagency teams develop, implement, and coordinate specialized, comprehensive treatment plans for children and youth who suffer from severe emotional disturbances, allowing these children to live in their own homes and communities, and empowering their parents and guardians to become informed consumers in their children's treatment. Since it began in 1993, the program has served 650 children, ages 3-18, from 601 families.
Project Connect facilitates four teams that include representatives from the Department of Mental Health, the Department of Mental Retardation, Juvenile Justice, and Special Education, as well as all professionals working with the child and family (such as therapists
, teachers, probation officers, or social workers) and other significant people in the family's natural support network (such as extended family members, clergy, or friends). Caregiver participation is a priority for Project Connect because it promotes family access, voice, and ownership. Deborah Jean Parsons, Program Director and the longest-serving project team member, says that, ideally, parent participation occurs in every case, to some degree, at all times.
Caregivers can include biological, foster, and adoptive parents; grandparents and other kinship caregivers; and others with primary responsibility for supervising and protecting the child. Each family works with a Parent Partner who serves as a case manager. Involved at one time in Project Connect with their own families, Parent Partners are full-time paid staff members trained in special education matters and severe emotional disturbances
Meeting biweekly, the teams develop individualized plans of services and supports for each child and family, building on their strengths. Project Connect staff moderate team meetings, and everyone present brainstorms ideas and suggestions for the child and family's treatment plan. Parents or guardians, and the youth themselves, are key participants.
The treatment plan covers services in key areas affecting the child and family, including mental health, social services, education, health (including insurance), vocation, recreation, safety (including crisis plans and substance abuse treatment), and supports to facilitate the plan (such as legal services or transportation). The plan outlines the family's needs and goals, existing and recommended services, and timelines, and assigns who is responsible for executing each item of the plan. Project Connect monitors implementation and conducts a formal review of the plan at three months.
Some 54% of the children referred to Project Connect have trauma histories and prior experience in hospital or residential care centers; the rest are profoundly emotionally and behaviorally troubled. Consistent with historical and national data on children in out-of-home care, 71% are boys; all have severe difficulty in their homes, schools, and communities.
Families working with Parent Partners are in deep, uncharted waters. They are in the unenviable position of both being blamed and blaming themselves for their youngsters' troubling behavior, and they are unfamiliar with the complex systems of care available to them. As this excerpt from a Parent Partner's letter to a new participant illustrates, family members know the task of caring for a child with a serious emotional disturbance is too much to do alone, but they may hesitate to open their door to the community.
Project Connect helped me explain to extended family members that my children were not easy to deal with and that some children need more attention, services, and time than others. They helped point out what a...very difficult job I am doing. They explained the needs of my children and why raising a child with special needs requires more than one person should have to cope with alone. With Project Connect on MY team, I was never alone. Someone UNDERSTOOD how difficult a typical day can be. That someone was my Parent Partner. She listened, never judged; she cared about ME. I remember being afraid to let "strangers" into my life. I didn't know these people or how they might judge me. They came, they helped. [Although] I am a stranger to you, I will listen, I will care, I will not judge. I will respect you and your confidentiality
. It is now my turn to be there for YOU. Please let me know how I can support you.
The therapeutic effects and transformation reflected in this parent's story don't negate harsh daily realities and stubborn behavioral management issues, but a sense of competency is expressed-being part of a solution rather than part of a problem, being a resource rather than alienated from resources, and being proactive instead of preoccupied with blame.Evaluation
In cooperation with Brandeis University, Project Connect has conducted program research and evaluation, featuring program output, since 1994, including an annual client satisfaction survey and outcomes. Areas evaluated include:The child and family team.
Do caregivers experience the team as a collaboration between family member and staff? As a collaboration among service systems? Are particular factors contributing to achieving the plan's goals?
Results from parent surveys consistently show a 98% satisfaction rate with the program and treatment planning process. One hundred percent of parents who have responded to the survey say the program has helped them regain hope for meeting their children's special needs and for seeing improved child behavior at home. Project Connect regards this newfound hopefulness to be significant for practice.Implementation of the plan.
Are needed services available and in place within 90 days? Are goals being achieved by the family, rather than for the family?
By three months, families see the most success with goals in the areas of child and family therapeutic interventions, such as counseling and mental health, and health services
. Parent services--supported jobs and education, social services, legal, and transportation--are more often "in process," "on hold," or "incomplete" at this milestone.Child behavior and family and school settings.
Do measures of child behavior upon entering the program and at six months show improvement? Do children who require them receive hospital or residential care in a timely manner? Do children who do not require out-of-home care have support and services to be managed at home? Do school programs support the family's goals and the service plan?
Behavioral gains have been documented. After six months in the program, Child Global Assessment scores improved for 63% of children--26% gained 10 points or more. Scores for 18% remained the same.
In addition, not one child has been placed in residential care due to lack of parent involvement or lack of comprehensive community-based services. Ninety-eight percent of children are able to enroll in an appropriate school program. Improvement in child functioning in the school, measured by the parents' rating of child strengths on the Behavioral and Emotional Rating Scale, is significant.
Just as important, every child who has needed hospitalization--160, or 25%, of the 650 children served since 1993--has received this level of care. Project Connect leaves doors open to resources during these spells.
Shortly after "Nancy's" enrollment in Project Connect at age 9, she needed to be hospitalized. After succeeding in a lengthy residential placement, Nancy was ready to come home. In partnership with Nancy's mother, Project Connect, the service system, and the community provided Nancy with required structured and therapeutic programs. Project Connect also provided respite for Nancy's family on Saturdays. Nancy became involved in art therapy and expressive theater and was matched with a big sister through Connect's Boston College Pulse Program. Today, Nancy and her mother live together at home.
In Project Connect, parents, Parent Partners, and mental health, social service, and education providers work as a team, guided by a concern for the safety and well-being of seriously emotionally disturbed children and youth. Their collective knowledge of how a child behaves in different settings cloaks the child in thoughtful consideration, compassion, and care. These perspectives, combined with program evaluations and data from studies of effective program models that include a strong family component, are persuasive.
Project Connect is demonstrating that a participatory, responsive approach to service delivery, in which one size does not fit all, can improve the lives of children and families.
For more information on Project Connect, visit the MSPCC website at www.mspcc.org. Click on "Programs & Services." All names
of children and families in case studies in "Research to Practice" have been changed.
Children's Voice Article September/October 2002