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Supporting Families of Children with Disabilities: What’s Missing?

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Item Summary

Title:Supporting Families of Children with Disabilities: What’s Missing?
Authors:Selber, Katherine
Tijerina, Mary
Hernandez, Virginia Rondero
Heyman, Cathryn
Keywords:with disabilities
disability policy
Date Issued:2007
Publisher:University of Hawaii at Manoa -- Center on Disability Studies
Citation:Selber, K., Tijerina, M., Hernandez, V. R. & Heyman, C. (2007). Supporting Families of Children with Disabilities: What’s Missing?. Review of Disability Studies: An International Journal, 2(4).
Series:vol. 2, no. 4
Abstract:This article presents findings from a web-based survey in which advocates and primary caregivers of children with disabilities were asked to indicate their level of satisfaction with various services and service providers, and their perceptions about how closely these services centered on family needs. A total of 68 valid responses to this pilot survey were obtained from subscribers of electronic mailing groups. The survey included questions about accessibility and affordability of services, satisfaction with services, degree of family involvement allowed by service providers, and information relating to the family-centered principles of treating and educating children with different types of disabilities. Eighty percent (80%) of respondents described a frustrating and invalidating process for acquiring services. However, once families were in the health care, educational, and social services systems, they reported finding the services received helpful. Implications for disability and health care policy derived from this research are offered.
Appears in Collections: RDS Volume 2, No. 4

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