Care Coordination Tools
Families raising children, especially those with special needs, are thrust into the role of care coordinators for their children, connecting the dots between home, health care, school and the community. Cristin Lind, mother of two, including a child with complex healthcare needs, has communicated the intensity of juggling so many balls. Beginning with her generation of Gabe’s Care Map, she has become a voice for parents and advocate for special needs children. Check out her recent blog post about parenting a child in the hospital. You may also want to learn more about or create your own care map; this guide shares how to use care mapping to aid to family-professional partnerships, communication and planning.
The positive impact of well-coordinated, family-centered, team-based care (with the family and the patient as part of the team) is now well-understood, and is at the heart of many current care initiatives and systems. But it can be challenging for professionals and caregivers alike. Red Treehouse strives to help families and professionals access information, tools and supports to encourage the process and contribute to better outcomes for all. Here are just a few of these resources.
Partnering with Your Doctor: The Medical Home Approach – A user-friendly, hands-on guide to support you and your family in understanding, accessing and providing a medical home (care that is accessible, continuous, comprehensive, coordinated, compassionate, culturally effective and family-centered). (While from the Region 4 Midwest Genetics Collaborative, the information is applicable to care for all special needs.)
Guiding People Through Systems (GPS): Online Care Notebook – An online care notebook to help families, children, teens and adults with disabilities organize important medical and school records into one convenient, online resource. With this tool, users can build a binder of commonly used forms, and download or email forms that can be shared with schools and healthcare or service providers. (Developed through a partnership between: The University of Cincinnati University Center for Excellence in Developmental Disabilities, the Ohio Department of Health, Family Voices of Ohio, Ohio Medical Home and the Autism Treatment Network (ATN) at Nationwide Children’s Hospital.)
Parent to Parent: Service Coordination: A tip sheet from parents whose child has either received or is currently receiving service coordination. In Ohio, when a child has complex, multiple needs the family is eligible for Service Coordination, through the local Family and Children First Council. Service Coordination is provided at no cost and is a way of organizing, or managing, many types of services and supports received by family members.
Partnering with Your Child’s Health Plan: Questions to consider and use to begin a dialogue with your child’s health care plan to help them examine and improve their programs, policies and resources for children and youth with special health care needs. (From Family Voices, National Center for Family/Professional Partnerships.)
Pediatric Care Coordination Curriculum: This curriculum was developed by Boston Children’s Hospital to support the provision of family-centered care coordination activities in pediatric medical homes. Pediatric care coordination is a patient and family‐centered, assessment-driven, team‐based activity designed to meet the needs of children and youth while enhancing the family’s caregiving capabilities.
Make sure to check out the events and organization profiles on RedTreehouse.org for more supports for your family’s journey!