Family Engagement
Family Engagement
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.
Having both family members and professionals work together as equal partners improves care for children with special health care needs. Family perspective is valuable.
The medical home initiative works closely with the family-led organizations of Family Voices, Parent to Parent and others. Why is family engagement important? Parents and kids are the experts of their own health.
Family engagement may look like participating in the following:
- Advisory boards or councils
- Development of their child’s care plan
- Focus groups or interviews
- Surveys or suggestion boxes
“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
The series of learning sessions and conversations was developed to support families who have children or youth with special health care needs. Participants will leave with tools they can use.
Families have shared that the training is a great way to connect with other families and learn about resources in their area.
Joining a Learning Session
The five Children’s Resource Centers for Children and Youth with Special Health Care Needs conduct these learning sessions statewide on a regular basis. Connect with your Children’s Resource Center to learn of upcoming dates or to sign up for future trainings. If you would like to host a learning session at your organization, please contact us below.
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. During this session, we explore the realities of raising a child with a special health care need or disability. Learn about resources and supports available for the family.
Materials
Requesting a Shared Plan of Care
A Shared Plan of Care is a summary of a child’s medical and nonmedical information along with the family’s strengths and goals. It is a tool for communication between the family, health care providers and other partners the family works with.
Materials:
- 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. During a session, you will talk about ways to assemble, organize and use a Care Notebook.
Materials:
Care Mapping
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. This session is a hands-on opportunity to create a Care Map unique to your family.
Materials:
Clinician Resources
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.
Family Resources
Children’s Resource Centers for Children and Youth with Special Health Care Needs (CYSHCN)
Wisconsin’s five Children’s Resource Centers are staffed by information and referral specialists dedicated to supporting CYSHCN, their families and providers. Services are free and confidential.
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.
Waisman Center Connecting Families
Connecting Families is a network of peer support in the state of Wisconsin for families of children and youth with special health care needs. They help families connect with others on a similar journey.
Contact Our Staff
Geeta Wadhwani, MPH, RN, BSN
Program Leader
Medical Home
(414) 337-2231
gwadhwani@childrenswi.org
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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.
