families partner in decision making at all levels & are satisfied with services they receive;
receive coordinated, ongoing, comprehensive care within a medical home;
once identified through infant screening, are linked to a medical home, family-support and early intervention by six months of age;
families have adequate insurance to cover the services they need;
families report that community-based service systems are organized so they can use them easily; and • receive the services necessary to effectively transition to all aspects of adult life.
Activities/Methodology: The proposed project will achieve this purpose and broad goals by:
- Assisting diverse families of CYSHCN to make informed choices about health care in order to promote good treatment decisions, cost effectiveness and improved health outcomes;
- Providing information regarding health care needs of and resources available for CYSHCN;
- Identifying successful culturally-competent health delivery models and working for their widespread implementation;
- Developing with representatives of health care providers, managed care organization, health care purchasers, and appropriate State agencies, models for collaboration between families of CSHCN and health professionals, and assisting in their implementation with diverse families;
- Providing training and guidance regarding the care of CYSHCN to families and professionals, including health and other service providers and state, county, and local agencies, including government and community-based organizations; and
- Conducting culturally competent and effective outreach activities to families, health professionals, schools and other appropriate entities.
Feedback: “It was inspiring to hear what other parent advocates were working on and beneficial to see the goals they focused on. This helped me to see what the world of the possible was for me.” “We are all advocates thanks to the wonderful training we’ve received from PEAL.”
Video segments from the Summit that have been incorporated into our Online IEP Mini-Series, an E-Learning Course, can be found on our website.