Ordinary Lives, Extraordinary Needs: Assuring Family Life For Children with Complex Health Care Needs
A report prepared for the Every Child Deserves a Home Coalition
Executive Summary
Full Report
Editors
Nancy Rosenau - Pam Walker
Authors
David Gates - Susan Davis - Perri Harris - Liz Healey - Nancy A. Hubley - Arlene Kanter - Shari A. Mamas - Holly Manaseri -
Lesley Owens-Pelton - Dianna Ploof - Nancy Rosenau - Bonnie Shoultz - Pam Walker - with major funding provided by
the Highmark Foundation
This report grew out of the efforts of the Every Child Deserves a Home and Family Coalition formed in Pennsylvania in 2004 to ensure that all children with complex health care needs and other disabilities have the opportunity to grow up in a loving, lasting family. The coalition was mobilized by concern about the estimated 2000 children with disabilities and complex health care needs in out-of-home placements in Pennsylvania and the related challenges Pennsylvania faces in assuring family life by more effectively supporting families. The report is the result of a comprehensive look at the issues including family and stakeholder interviews and policy analyses. The report describes key findings, challenges, and recommendations.