Navigating Healthcare
NAVIGATING HEALTHCARE
Healthcare Resources for Families with Extra Needs
Welcome! This page provides families and caregivers with practical information, tools, and resources to support the health and well-being of children and youth with special healthcare needs and disabilities.
Explore helpful guides, learn about patient-and-family-centered care, and find resources to prepare for clinic visits, coordinate care, and advocate for your child’s health.
WELL-VISIT PLANNER
The Cycle of Engagement Model
Take 10 minutes to get a personalized visit guide for your child’s next well-care visit.
- EXPLORE key issues and needs important to your child’s health
- LEARN about important topics to discuss with your healthcare provider
- PICK your top priorities and get educational information before the visit
- PARTNER with your child’s provider by sharing your personalized visit guide
PATIENT AND FAMILY CENTERED CARE
What is Patient/Family-Centered Care?
Patient-and-family-centered care supports children’s health through respectful partnerships between families and professionals. It honors everyone’s strengths, culture, and expertise.
Key Principles:
- Families and professionals work together in the best interest of the child and family
- Everyone respects each other’s skills and expertise
- Trust is fundamental
- Communication and information sharing are open and objective
- Decisions are made together, with a willingness to negotiate
How You Can Use Your Expertise
- Participate in patient/family advisory committees at your clinic or hospital
- If none exist, help start one
Your voice matters. Your knowledge matters. Your partnership matters in your child’s care.
MORE INFORMATION
Core Topics in Healthcare
Primary Doctor / Medical Home
Excellent primary care is crucial for children with special healthcare needs. A Medical Home is community-based care built on trust and respect.
Medical Home Principles:
- Know your patients
- Partner with patients and families
- Coordinate all aspects of care
- Co-manage care with specialists
- Assist with transitions
- Connect families to community resources
Resources:
- National Center for Medical Home
- Center for Medical Home Improvement
Choosing a Doctor
Tips for finding a primary provider:
- Check insurance provider lists
- Look for a provider whose style fits your needs
- Ask about clinic hours, accessibility, and experience with your child’s condition
- Talk with family, friends, or other providers for recommendations
- Meet with the provider to discuss goals and needs
- Develop a care plan and actively participate in care
Creating a Care Plan
A care plan helps communicate and coordinate your child’s health needs. It can include:
- Chronic health conditions and status
- Medications
- Providers involved
- Equipment used
- Important health events
- Care preferences
- Emergency plans
- Typical lab results and protocols
Bright Futures Family Pocket Guide
Raising Healthy Infants, Children, and Adolescents – 2nd Edition
Developed for families, in partnership with the AAP and other professionals, this 168-page guide provides:
- Daily health tips and encouragement for families
- Information on the importance of well child visits, including children with special healthcare needs
- Guidance to speak up and take an active role in your child’s care
- Insights into forming partnerships with other families and professionals
- Comprehensive child development information
- Links to additional resources for children’s health
Patient Safety Information
Serving on Healthcare Committees
Families and patients bring unique expertise to healthcare systems. This can include:
- Participating in advisory committees
- Sharing experiences to improve care and systems
- Advocating for family involvement
Partnerships
Family Voices of Minnesota collaborates with state and national organizations to provide quality services for children with special healthcare needs.
Current Partnerships Include:
- MCHB National Transition Center Advisory Committee
- Region 4 Genetics Collaborative Transition Workgroup
- National Center for Family/Professional Partnerships
- MN CHIP
- Health Care Home Outcomes Committee
- Patient/Family Council
- Learning Collaborative Leadership Committee
