The primary purpose of this proposed project is to assist children and young adults with chronic illness and disability to enter adulthood healthy and ready to advocate for their needs in the adult medical system from an established medical home. Families and young adults need assistance to navigate complicated systems. F2F Kansas will get information from families about the services they need, respond with materials and training, partner with service providers to reach families, and offer training to pre-service and other service providers from a family perspective.
The project staff will give emotional support to families and equip them with practical information to address their situations or concerns. THe three part-time staff provided by this grant will offer individual assistance to parents on topics of interest to families of CYSHCN and technical assistance to all staff members at Families Together, Inc. Each family who attends the track of CYSHCN at the agency annual conferences will also receive a CareING notebook with organizational dividers for all the information the need to added meeting with the professionals who serve their child. Families will have access to current information through the F2F page on the Families Together website, a quarterly printed newsletter, and a weekly email newsletter. F2 F staff will recruit new supporting parents who have CYSHCN to encourage and educate other families about systems of care and support. The staff will match families based on any criteria the requesting family wishes. Staff members will contact providers of health care services to families of CYSHCN and provide the clinic or department personnel with brochures about Kansas F2F Center. Staff members will contact medical schools, medical societies, and related services educational programs for info about the Kansas F2F.
Health Summits / Team Empowerment Conferences (TEC)
Every fall we hold an annual Health Summit/TEC to provide news and current resources on health issues for CSHCN. Families of CSHCN, youth with SHCN, professionals, and vendors participate in the summit. Topics addressed are timely, and this year included: Health Homes in KanCare, Affordable Care Act, Mental Health and Health Care, Sexuality, and Stress Management. Our keynote speaker was an individual with a disability who shared her experience growing up and overcoming challenges in her life. We provided scholarships for families to attend. Forty-one individuals participated in the event. Feedback demonstrates the importance of this event for families: “The keynote speaker gives me hope that my child can take on the world if she wants.” “The Sexuality workshop answered so many questions.” “Thank you so much for the opportunity to participate in this Summit. It was so helpful to me and my child.”