PROJECTS

Family Voices National and State Network Members actively pursue the mission of improving healthcare for children and youth with special health care needs through their projects and activities. All projects have the goals of increasing the leadership capacity of families; sharing information about heath care services; and, supporting essential partnerships between families and professionals. Projects and activities of Family Voices National are described. below. Please visit Family Voices in Your State for information about projects and activities of Family Voices Network Members.

• The National Center for Family/Professional Partnerships for CYSHCN
  Providing leadership on helping families to partner in decision-making at all levels.
  
  
• Family Voices' Telemedicine Report to Families
  Advancement of telemedicine practices for families of children with special health care needs.
  
  
• Bright Futures
  Development of resources and materials for families and communities to promote and improve the health and well-being of all children.
  
  
• Building Partnerships with Managed Care Organizations
  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 (completed project).
  
  
• The Consortium for Children and Youth with Disabilities and Special Needs
  Inclusion of family perspective in research projects and materials.
  
  
• Data Resource Center
  Development of an interactive website that provides access and promotes understanding of the National Survey for Children with Special Health Care Needs.
  
  
• Employee Benefit Study for Children with Special Health Needs
  Survey and findings regarding benefits for employees who care for children with special health care needs.
  
  
• Families in Program and Policy (FiPPs)
  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.
  
  
• Family Matters: Using Bright Futures to Promote Health and Wellness
  Development of resources and strategies to promote health and wellness for children with special health care needs and their families to ensure a bright future for all children.
  
  
• Families and Title V
  Development of materials to document and support family partnership with Title V programs and the Title V block grant.
  
  
• From Data to Action
  Development of information about managed care services & policies for children with special health care needs through interviews and meetings with plans and key stakeholders (completed project).
  
  
• Genetics Education Needs Evaluation (GENE) at March of Dimes
  Development of a model for consumer genetics education for underserved and underrepresented populations
  
  
• Kids As Self Advocates (KASA)
  Development of a national grassroots network of youth with special needs and friends, speaking on their own behalf.
  
  
• Managed Care and Health Systems for Children with Special Health
  A training-the-trainer workshop for health care financing.
  
  
• Title V Toolbox
  Collection of resources, materials, and models for family involvement from the FiPPS project organized in a searchable web repository.
  
  
• Your Voice Counts
  A survey ('Your Voice Counts) of families of children with special health care needs.