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Detroit: Project SPIN - self advocacy group.

Detroit: Project SPIN -- Selt Advocacy Group

Project SPIN, funded in September 1987 as a three-year demonstration project through the Michigan Developmental Disabilities Council and implemented by the Family and Neighborhood Services agency for Wayne Country, MI, provides services to families of children with special health care needs with the objective of assisting families in the care of their child within the home environment.

The idea behind Project SPIN (Supporting Parents In Need) surfaced when the Michigan Developmental Disabilities Council expanded its definition of developmental disabilities to include children with multiple health needs and developed a three-year plan to look at the families of these children. Several types of projects were reviewed and a decision was made to go with a client service management model with emphasis on an advocacy component to determine what types of programs would work and to document what resources are still needed.

Services offered through Project SPIN include case management, advocacy, referrals to respite programs, assistance in insurance and health case issues, teaching self-advocacy skills, and clinical services. Sixty families have been served by Project SPIN, including twenty-six families for whom the project was able to secure state Medicaid waivers for long-term respite care for as long as the child/family needs it. Additionally, twenty-eight families are served for whom periodic contact is maintained (crisis intervention). Six families have experienced the death of a child.

An important component which developed out of project SPIN is the parent/self-advocacy resource group composed of ten to twelve parents whose children have a variety of special needs. This group's primary project is "Skills Sharing Day," an annual conference designed to improve the effectiveness and efficiency with which parents and professionals work together to manage the care of children with special health care needs. This year's conference, in July, was held at Children's Hospital of Michigan, Detroit, MI, and featured Stanley Handmaker, M.D., Ph.D., who is a parent of a child with special needs, and currently an Associate Professor of Pediatrics, as well as an Associate Professor of Psychiatry, at the University of New Mexico School of Medicine. He presently chairs the New Mexico Developmental Disabilities Council and sits on the Council for New Mexico Services for the Handicapped. Conference attendance ranges from 175 to 225 annually.

Topics of this year's conference included "Family-Centered Care," "How To Communicate with Health Care Professionals," "Community Resources," and "Sibling Issues."

Parent consultants are a unique element of Project SPIN. Rita Iacobelli coordinates the Family Airway Management Effort for Project SPIN and Rebekah Berman coordinates the Family Support Group, providing emotional support to parents of children with special health care needs.

Project Spin's Parent Self-Advocacy Group consists of about fifteen to twenty parent members who participate on Parent Advisory Committees, Interagency Coordinating Councils, Parent/Professional Advisory Committees, and a Task Force on Family-Centered Care at Children's Hospital of Michigan. They also lobby for legislation and this year several of the parents, along with their children with special needs, testified in Lansing, before state Senate committees to request continuation of funding for family subsidies for respite and permanency planning monies.

Project SPIN sponsors parent's attendance at the Association Care of Children's Health Conference each year as well as other educational conferences throughout the year.

Family and Neighborhood Services anticipates the future direction of Project SPIN will be training ad technical assistance to other communities across the state to set up similar teams.
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Title Annotation:Family Support Bulletin
Author:Berman, Rebekah
Publication:The Exceptional Parent
Date:Jan 1, 1991
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