United states deparment of education office of special education and rehabilitative services
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IV. PART C: FAMILY-CENTERED SYSTEM OF SERVICESResearch has shown that improved outcomes for young children are most likely to occur when services are based on the premise that parents or primary caregivers are the most important factors influencing a child’s development. Family-centered practices are those in which families are involved in all aspects of the decision-making, families’ culture and values are respected, and families are provided with accurate and sufficient information to be able to make informed decisions. A family-centered approach keeps the focus on the developmental needs of the child, while including family concerns and needs in the decision-making process. Family-centered practices include establishing trust and rapport with families, and helping families develop skills to best meet their child’s needs. Parents and other family members are recognized as the linchpins of Part C. As such, States must include parents as an integral part of decision-making and service provision, from assessments through development of the IFSP, to transition activities before their child turns three. Parents bring a wealth of knowledge about their own child’s and family’s abilities and dreams for their future, as well as an understanding of the community in which they live. In 1986, Part C of the IDEA was recognized as the first piece of Federal legislation to specifically focus attention on the needs of the family related to enhancing the development of children with disabilities. In enacting Part C, Congress acknowledged the need to support families and enhance their capacity to meet the needs of their infants and toddlers with disabilities. On the cutting edge of education legislation, Part C challenged systems of care to focus on the family as the unit of services, rather than the child. Viewing the child in the context of her/his family and the family in the context of their community, Congress created certain challenges for States as they designed and implemented a family-centered system of services. Validation Planning and Data Collection OSEP with the Steering Committee identified two recurring themes about early intervention services in Nebraska leading to the validation data collection phase: (1) How do agencies incorporate family concerns, priorities and resources in the evaluation and assessment process? How are staff prepared and trained to elicit this information? and, (2) What strategies do agencies use to ensure that families are an integral part of the early intervention system? Analysis of data resulted in the identification of the following strengths and suggestions for improved results for infants and toddlers and their families.
1. Technology to Support Families The State has provided considerable resources to support families enrolled in the State’s early intervention system. The Co-Lead Agencies have helped to sponsor two innovative family outreach projects using computers and the Internet. The Nebraska Network for Children and Families, initiated through a Maternal and Child Health Bureau grant and other funding, links early intervention families, service coordinators, peer supporters and agencies using the Internet. A web site provides a library, notices about workshops, public hearings, pending changes in regulations and policies. Examples of how this project has impacted on families’ lives, as cited in “Accomplishments: Nebraska Early Intervention System,” are: One mother took her [computer] terminal with her as she went off to the hospital in an ambulance with her children with disabilities. Before going to their child’s appointment with a physician, one family went on-line and pulled in information from the...web site. This helped them to be more informed and to ask specific questions... A rural family member found employment without having to leave home (which would have entailed finding respite care and transportation) by doing an on-line job search and application. The IDEAS Network, a project funded by the U.S. Department of Commerce and co-sponsored by the Co-Lead Agencies, the University of Nebraska, and other state agencies, provides support to families of children with disabilities through an Internet web site. This web site provides peer support via e-mail, conducts electronic forums about special topical areas and provides “expert” information such as “Ask Rx” through which program the Nebraska Pharmacist Association answers questions about drugs and drug interactions. 2. Personnel Training Personnel training in family-centered practices is also a priority in Nebraska. The Nebraska Interagency Coordinating Council is currently promoting methods to include parents and community colleges in designing and promoting pre-service education for early intervention personnel. In October 1998, the Nebraska Interagency Coordinating Council, with the Co-Lead Agencies, co-sponsored a SCRIPT (Supporting Change and Reform in Interprofessional Preservice Training) Conference of parents, higher education personnel, and Planning Region Teams. The SCRIPT conference was intended to promote family-centered personnel preparation and to develop regional plans to enhance family-centered practices in natural environments. (SCRIPT is an OSEP-funded project.) The Co-Lead Agencies will be monitoring the progress of the planning region teams’ implementation of family-centered practices during their review of each region’s annual reports to the State. B. SUGGESTIONS FOR IMPROVED RESULTS FOR INFANTS, TODDLERS AND THEIR FAMILIESPositive changes in the following areas could lead to improved results for infants and toddlers with disabilities and their families. 1. Procedures to identify family concerns, priorities and resources Based on OSEP’s interviews and review of records, the inclusion of information from the family-directed assessment and identification of family concerns, priorities and resources were addressed in many different ways across the State. In some areas OSEP visited, however, it was noted that family concerns and results of family assessments were not included on any IFSPs. Often, family needs would be incorporated in the goal statements for the child, seemingly without an assessment of family needs, concerns and priorities. The Co-Lead Agencies held one Statewide conference to address this concern during the time of OSEP’s visits. Representatives from each Planning Region teams, including families, attended this training. The Planning Region teams were instructed to develop a plan for including family concerns, priorities, resources, services and supports into the IFSP process and send reports of their plans to the Co-Lead Agencies. OSEP encourages the State to continue to provide training and guidance on this matter. 2. Parental input on Planning Region Teams The Parent Training and Information Center and a number of parents suggested that planning region teams need more parental involvement. The State Interagency Coordinating Council and early intervention staff at the Parent Training Center intend to provide training for parents serving on the planning region teams so that parents are equal partners with the service providers and others on the teams. OSEP encourages the State to pursue this endeavor. |