FLORIDA

2196 Main Street Suite K
Dunedin, FL 34698-5694
Phone:  (727) 523-1130 Fax:  (727) 523-8687Toll-Free:  (800) 825-5736
Primary Contact(s):
Marilyn Ruiz (727) 523-1130
Grant Abstract Summary:
This project will assist families of CSHCN to make informed decisions about health care for their children, through providing support, training, assistance, toolkits, and additional resources to families and professionals, so that families can be effective partners in health care decision making at all levels and that they will report satisfaction with the services they receive.

Activities/Methodology:
1: Coordinate, facilitate, and provide training for parents of children with special health care needs, providers, and other stakeholders on relevant issues through workshops and conferences.
2: Provide direct technical assistance and facilitate peer-to-peer technical assistance of varying intensity and duration including information and referral, short-term assistance, and in-person assistance to families, professionals, and other stakeholders.
3: Collect, develop/revise, store, and disseminate information on issues relevant to CMSN services and supports.
4: Provide intensive training and family support to targeted families of CSHCN.
2.1: Maintain sound fiscal management of all Family STAR funds.
2.2: Provide programmatic evaluation and feedback, available to all stakeholders, upon which program activities will be measured.
2.3: Maintain a comprehensive, accessible, and versatile data management system for all programmatic activities.
2.4: Develop with representatives of healthcare providers, managed care organizations, healthcare purchasers, other HRSA funded grantees, and appropriate state agencies, a model for collaboration between families of CSHCN and health professionals.
2.5: Provide input and feedback to MCHB, applicable state agencies, the National Center for Families/Professional Partnerships and National Family Voices on the ongoing operations of technical assistance and training activities.
Highlighted Activity:
Healthcare Toolkit
The Healthcare Toolkit helps families of children and young adults with special health care needs to be prepared for a medical visit. This Toolkit provides a family-friendly way for families to keep their children’s and young adult’s health information at their fingertips and improves communication between families and providers. Having records and transcripts in one place may help cut down on health cost, for example, when doctors do not have to duplicate tests. The 102 families, youth, and professionals who have used the Healthcare Toolkit have provided very helpful feedback on how to improve this resource and we have implemented the changes and suggestions made by all participants. This has been a wonderful opportunity for collaboration with families, youth, and health care professionals.