Collection of resources, materials, and models for family involvement from the FiPPS project organized in a searchable web repository.
Survey and findings regarding family involvement with state Title V programs, including family participation in CSHCN and MCH initiatives, advisory committees, employed positions, and more.
Advancement of telemedicine practices for families of children with special health care needs.
Survey and findings regarding benefits for employees who care for children with special health care needs.
A survey ("Your Voice Counts") of families of children with special health care needs and reported findings based on the health care experiences of families with children with special health care needs.
Inclusion of family perspective in research projects and materials.
Development of information about managed care services & policies for children with special health care needs through interviews and meetings with plans and key stakeholders.
Survey of families of children with special health care needs in Atlanta, Denver, Des Moines, and Seattle with follow-up forums bringing together families and health plans to discuss findings.
Development of a model for consumer genetics education for underserved and underrepresented populations.
