Family engagement happens when families have a primary and meaningful role in decision-making processes regarding the care their child is receiving. It is a collaborative process used to build genuine and effective partnerships over time. Meaningful family engagement is about improving health and well-being for all children and families and it happens at system, community and individual levels.
Families want to be sure that their child’s needs are met. Having both family members and professionals work together as equal partners improves care for children with special health care needs. Family engagement is being an active and valued partner. Family perspective is valuable!
The Medical Home Initiative works closely with the family-led organizations of Family Voices, Parent-to-Parent and other partners to build the capacity of family members to be partners in their child’s care and with health care professionals. There are many approaches to family engagement. Family members may participate in:
- Health care surveys or suggestion boxes
- Focus groups or interviews
- Development of their child’s care plan
- Advisory boards or councils
- Quality improvement initiative work groups
Why is family engagement important? Family-centered care and family engagement improve outcomes for patients and families, increases family and clinician satisfaction, decreases health care costs and improves effective use of health care resources.
“My son’s doctor, nurse and I are a team. They listen carefully to me when I talk about him, and I try to follow their suggestions. We have different roles, but we respect each other. My son’s medical care is better because of this partnership.” – Wisconsin Parent
“Partnering with families has been the best part! It feels like the ‘quality improvement’ version of shared decision making. I cannot imagine going back to the way we functioned before with our work siloed from those who are most affected by it!” – Wisconsin Pediatric Provider
C.A.R.E. Medical Home Series for Families
Appropriate for Families and Professionals
This series of four presentations and discussions was developed to support families who have children or youth with special health care needs. The series may be offered individually or in combination, virtually or in-person. At the end of the discussions, participants will understand what a medical home is, how a medical home may benefit their child and family. The discussions are appropriate for both professionals and families.
Join us to learn strategies to coordinate and strengthen communication between families, their child’s health care team and other partners the families work with. Families have shared that the training is a great way to connect with other families and learn about resources in their area.
To Participate in a Presentation
The five Regional Centers for Children and Youth with Special Health Care Needs conduct these presentations across the state on a regular basis. Connect with your Regional Center to learn of upcoming dates or to be put on a mailing list for future trainings. For health care professionals, contact your Regional Center about hosting a presentation.
Caring for the Whole Family | Assembling a Care Notebook | Requesting a Shared Plan of Care | Exploring Care Mapping
Caring for the Whole Family
When a family discovers that their child is growing differently than other kids, they may experience a wide range of emotions as their world begins to change. Join us as we explore those emotions and the realities of raising a child with a special health care need or disability. Learn about resources and supports available for the whole family. This discussion is for families who may be new to the world of special health care needs and disabilities. (45-60 min)
- Finding Your Way: A Navigation Guide (English or Spanish)
- Parent to Parent of Wisconsin
- Regional Centers for Children and youth with Special Health Care Needs
Requesting a Shared Plan of Care
What is a Shared Plan of Care? A Shared Plan of Care is a summary of a child’s medical and non-medical information along with the family’s strengths and goals. It may be used as a tool for communication between the family, health care providers and other partners the family works with. Learn more about the benefits of having one and how to develop one. (20-30 min)
- Sample Shared Plan of Care from American Academy of Pediatrics (English or Spanish)
- Sample Shared Plan of Care from Indiana University’s Riley Children’s Hospital
- Goal Cards for Children and Families (hard copy)
- Creating Goals for Children and Families (interactive website)
Assembling a Care Notebook
Care Notebooks are a way to organize a child’s medical records, resources and educational information. Join us to learn ways to assemble and organize a Care Notebook and the benefits of using it to coordinate care. (20-30 min)
Exploring Care Mapping
A hands-on opportunity to create a care map. A Care Map is a visual way to show all the people and services involved in caring for and supporting a child with special health care needs. Each family’s care map may look different as each family decides how many details to include.
Wrap up the session with tying things missing in the family’s Care Map to what is available in the local area. (20-30 min)
- Institute for Patient and Family-Centered Care
Learn how to advance the understanding and practice of patient- and family-centered care in all settings.
- Patient Engagement in Redesigning Care Toolkit
This resource contains tools to strengthen patients’ roles in teams designing health care delivery and quality improvements.
- Patient Family Centered Care Partners
Find workshops and resources to improve the quality, safety and experience of health care through family partnerships.
- Team Engagement for Quality Improvement Welcome Booklet
An introduction for families and health care teams working together to improve care for children and youth with special health care needs.
- Family Voices of Wisconsin
Join a statewide network of families who have children with special health care needs. Find information, training and leadership opportunities.
- National Resource Center for Patient/Family-Centered Medical Home
Browse useful resources for parents and caregivers.
- Parent to Parent of Wisconsin
Get connected one-on-one with another parent of a child with special needs.
- Regional Centers for Children and Youth with Special Health Care Needs (CYSHCN)
Wisconsin’s five Regional Centers are staffed by information and referral specialists dedicated to supporting CYSHCN, their families and providers. Services are free and confidential.
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Monthly news, events and resources from the Wisconsin Medical Home Initiative.
The Wisconsin Medical Home Initiative is funded by the Wisconsin Department of Health Services’ Title V Children and Youth with Special Health Care Needs Program and the Maternal Child Health Program located in the Division of Public Health.