The Utah F2F HIC gives information, resources and referrals to families of CYSHCN and health care professional to effectively coordinate care and access health care funding and home and community based services. The current system of care is very complex and fragmented for CYSHCN and their families as well as for their professional partners. The F2F HIC will provide direct support in a variety of mechanisms and collect data and evaluations from all activities to guide activities to produce successful outcome for the grant but more importantly for the CYSHCN, families and their professional partners.
Activities/Methodology: The activities of the project are designed to enhance the F2F HIC building on the existing, successful Center utilizing a proven, effective family to family consultation and support model to deliver information as assistance, helping families to expand their confidence and capacity to be effective in accessing health care and related services. The goals, objectives and activities have been carefully developed, expressed and adjusted to address key provisions of the ACA within health care reform to address the issues and challenges identified for information, training and support for families including those in underserved and vulnerable populations. The strategies that guide the project’s activities include: providing quality, evidence based information and credible reality based information, training and materials; including professionals in training activities; providing effective information and referral assistance, providing a family-to-family model of peer mentoring to include emotional support; and build the trust and therefore the engagement of cultural and rural family leaders to guide the support, information and training in their local communities. All strategies and activities are continually adapted based on evaluation and feedback from the intended recipients which include families, young adults, advocates and professional partners.
Family Involvement in the Medical Home Portal
The Medical Home Portal is a comprehensive website that provides reliable information and resources to help families and professionals care for CSHCN. The development of the modules about resources and services is a perfect example of parent/professional partnership. All the information is developed, vetted and published by a team that includes staff from the F2F as well as many other families throughout the state and region. All partners are committed to keeping the site current so that it can serve as a credible and informative resource for Utah and other states. The majority of the family content is written and edited by F2F staff and vetted in collaboration with the Medical Home Portal staff. During this year we have seen an increase in page views of 3% from the previous year. The “For Parents & Families” section had the highest rate of change in page views this year—a 28.61% increase representing access by 12,380 unique visitors spending an average time of 2:14 minutes on a page. The portal can be visited at http://www.medicalhomeportal.org/
Resources are shared by the F2FHICs to help families, other family leaders and partners. While you are welcome to adapt any of the materials for your organization, we ask that you include an acknowledgement of the author/source in your adaptations and that you let the original author know of your use of the materials. Copyrighted materials may not be reproduced or adapted without the express permission of the author.
A series of 10 videos developed in partnership with Utah Parent Center, The Autism Council of Utah and Utah Family Voices F2F, providing tips and lessons from families and professionals to create a community for your child with autism.
A 73-page Care Notebook to be used as an organizing tool for families who have children with special health care needs. Use a Care Notebook to keep track of important information about your childâ€™s health care. This Care Notebook has been designed for families of Children and Youth with
Special Health Care Needs.
A 21-page guidebook to help families in their role as caregivers. Includes sections on the roles of caregivers, achieving well-being, managing as a family, Utah resources and national resources.
A 14-page organizing tool for youth with disabilities or a chronic health illness.
Use the Transition Notebook to keep track of important information about your health care and
the services you will need as you move into independence.