Early Intervention Collaborative Study Phase IV: Adolescence

This project is a continuation of the Early Intervention Collaborative Study (EICS) of children and families who participated in early intervention services because of a child's special needs identified before 24 months of age. This phase of the longitudinal study will focus on the 120 adolescents as they turn age 18, a critical transition point for them and their families.

The general aims are to examine the social-emotional outcomes of adolescents with developmental disabilities and the well-being of their parents. Analyses will focus on modeling change and testing specific hypothesized predictors of change over multiple time periods in regards to behavior problems and peer acceptance of adolescents and child-related stress and depression reported by their mothers and fathers. Hypotheses specifying contemporaneous predictors of adolescent autonomy and maternal and paternal well-being will also be tested.

The purpose of this project is to provide empirical information on healthy development in adolescents with special needs and their families, which will aid in the construction of policies, programs, and practices for this important group of youth. This project is funded by the Maternal and Child Health Bureau.

Consortium for Children and Youth with Disabilities and Special Health Care Needs

The Consortium for Children and Youth with Disabilities and Special Health Care Needs is a Rehabilitation Research and Training Center funded by the National Institute of Disability Research and Rehabilitation. The Consortium is a partnership among Georgetown University's Center for Child and Human Development, the Heller School, the Institute for Child Health Policy (University of Florida), and Family Voices, a national organization of families and friends working on behalf of children with special health care needs. The mission of the Consortium is to improve rehabilitation outcomes for children and youth with disabilities and special health care needs by increasing the effectiveness of service systems. As part of the Consortium, the Starr Center is conducting research on access to care for children with special health care needs.

Families of Adolescents and Adults with Autism:
Impacts of Lifelong Caregiving

The Starr Center is conducting a study of 407 families of people with autism who live in Massachusetts and Wisconsin. The study goals are to describe the quality of life of these families, to assess the extent to which their service needs are adequately met, and to examine the plans they have made and put into place for the future. This study builds on the results of the Aging Families of Adults with Mental Retardation study (see below), which followed 461 families over a 12-year period in order to determine their unique and common life stresses and the plans they had made for the future care of their son or daughter with mental retardation.

The primary goals of this project are (1) to conduct innovative research on family caregiving and the social lives of adolescents and adults with autism, and (2) to disseminate the research findings to policy-makers, practitioners, families, and the general public.

Aging Families of Adults with Mental Retardation:
Impacts of Lifelong Caregiving

From 1988-1998, the Starr Center studied 461 families, all of whom provided in-home care to an adult son or daughter with mental retardation when the study began. These parents faced an atypical and unstudied dual challenge: the continuing caregiving responsibility for an adult child with a disability and the personal challenge of adjusting to the manifestations and consequences of their own aging.

The overall purpose of the research was to investigate the factors contributing to residential transitions for adults with mental retardation, the consequences of such decisions for families, and changes in the well-being of adults with retardation who continued to live at home as compared to those who moved to a different residential setting.

During the study period, about a quarter of the adults moved out of the parents' home. In other families, the primary responsibility for caregiving shifted from the mother to the father, and sometimes to an adult sibling, often due to declining health of the mother. In the majority of families, however, one or both parents continued to provide in-home care. All members of the study described both gratifications and worries as part of their experiences as long-term caregivers.

Family Partners Project

This project was a participatory action study conducted in collaboration with Family Voices, Inc., a national organization of advocates for children with special health care needs. The study involved the design, conduct, and analysis of data from a national survey of families of children with special health care needs in 20 states.

Families were sampled from the mailing lists of Family Voices and from recipients of Title V Services in the 20 states. Data were received from 2,220 families, who varied considerably with respect to their socioeconomic and demographic characteristics, the conditions and health status of their children, and their utilization of a variety of services. The analyses focused on parental satisfaction with their child's main health plan, quality of services received from medical specialists, occupational, physical, and speech therapists, home health services, mental health providers, and care coordinators. The study revealed the complexity of the service systems for such families and children, areas in which reform is needed to improve the service delivery system, and the special vulnerability of particular children and families.

The Family Partners Project was funded by the Jack E. and Zella B. Butler Foundation, the David and Lucile Packard Foundation, and the Maternal and Child Health Bureau.