Healthcare Transition Guide

Successfully transitioning from pediatric to adult diabetes care while taking ownership of your health management

When and Why to Transition

Typical Transition Timeline

Ages 18-21: Planning Phase

  • Start Discussions: Pediatric endo begins transition conversations
  • Build Skills: Take increasing responsibility for appointments, prescriptions
  • Research Options: Begin looking into adult endocrinologists
  • Insurance Review: Understand coverage changes at 26 (parent's plan ends)
  • Transfer Records: Begin gathering medical history documentation

Ages 21-26: Transition Period

  • Most Common: Transition happens during college years or early career
  • Gradual Process: Some providers allow gradual transition with support
  • First Adult Appointment: Schedule while still seeing pediatric provider if possible
  • Overlap Care: Ideally have one appointment with new endo before last pediatric visit

Why Transition is Important

  • Adult endocrinologists specialize in adult T1D management and complications
  • Pediatric offices typically require transition by age 21-25
  • Different healthcare needs as you age (pregnancy planning, complication screening)
  • Insurance coverage often changes
  • Building independence and self-advocacy skills
Finding Your New Endocrinologist

How to Find the Right Provider

Where to Search

  • Referrals: Ask pediatric endo for recommendations
  • Insurance Network: Check in-network providers
  • Online Directories: AACE, Endocrine Society provider finders
  • Hospital Systems: Major medical centers often have adult T1D programs
  • T1D Community: Ask other young adults with T1D for recommendations

What to Look For

  • Experience: Specializes in Type 1 diabetes (not just Type 2)
  • Technology-Savvy: Comfortable with pumps, CGMs, latest tools
  • Communication Style: Collaborative, listens to your concerns
  • Location: Reasonable distance from home/work
  • Availability: Accepting new patients, reasonable appointment wait times

Questions to Ask Before First Appointment

  • Do you specialize in Type 1 diabetes? (some endos focus mainly on Type 2)
  • Are you comfortable managing insulin pumps and CGMs?
  • How do you handle urgent concerns between appointments?
  • Do you offer telehealth appointments?
  • What is your practice's patient portal system for communication?
  • Do you work with diabetes educators and dietitians?
  • What is typical wait time for appointments?
Preparing for Your First Adult Appointment

What to Bring

Essential Documents & Information

  • Medical Records: Request transfer from pediatric endo (diagnosis date, past A1Cs, complications screening results)
  • Current Medications: List of all prescriptions with doses (insulin types, amounts, timing)
  • Device Information: Insulin pump and CGM models, settings
  • Recent Data: CGM reports, pump downloads, or logbook (last 2-4 weeks)
  • Insurance Information: Card, coverage details, prescription benefits
  • Questions List: Write down concerns and questions beforehand

What to Expect

First Visit Differences

  • More Independent: Parents may not attend (your choice)
  • Complete History: Longer appointment to establish care
  • Adult Focus: Discussion of adult concerns (career, relationships, planning)
  • Your Responsibility: You'll manage appointments, prescriptions, refills

Building the Relationship

  • Be honest about challenges and struggles
  • Ask questions—there are no "dumb" questions
  • Share your goals and priorities
  • Discuss communication preferences
  • It's okay if first provider isn't the right fit—you can switch
Taking Ownership of Your Care

Self-Management Skills to Master

Healthcare Administration

  • Scheduling: Make your own appointments, set reminders
  • Prescriptions: Track refills, call pharmacy, request renewals from doctor
  • Insurance: Understand your plan, handle prior authorizations, appeal denials
  • Supplies: Order before running out, track inventory
  • Records: Maintain personal health records, request copies when needed

Medical Communication

  • Self-Advocacy: Speak up about concerns, ask for what you need
  • Problem-Solving: Identify issues and work with team on solutions
  • Data Sharing: Upload CGM/pump data before appointments
  • Emergency Care: Know when to call doctor vs. go to ER
  • Between Visits: Use patient portal, don't wait 3+ months for concerns

Long-Term Health Management

  • Annual Screenings: Track when due for eye exams, kidney function, foot checks
  • Sick Day Plans: Know how to adjust insulin when ill
  • Goal Setting: Work with team on realistic A1C and blood sugar targets
  • Technology Updates: Stay informed on new devices and treatments
  • Complication Prevention: Understand importance of consistent management
Insurance & Coverage Changes

Navigating Insurance Transitions

Staying on Parent's Plan (Until Age 26)

  • ACA Benefit: Can stay on parent's insurance until 26th birthday
  • Regardless of: Marriage, employment status, student status, living situation
  • Important: Verify new adult providers are in-network
  • Coordination: If you have own employer coverage, decide which is primary
  • Plan Ahead: Start researching options by age 25 for smooth transition

Age 26: Finding Your Own Coverage

  • Employer Plans: Enroll through job (often best option for T1D)
  • Marketplace: Healthcare.gov or state exchange with premium subsidies available
  • Spouse's Plan: Add to partner's employer coverage if married
  • Medicaid: If income-eligible (excellent T1D coverage in most states)
  • COBRA: Temporary option to continue parent's plan (expensive but prevents gap)

NEVER let coverage lapse—pre-existing conditions can complicate future coverage.

Special Enrollment Periods

  • Losing Coverage: Can enroll within 60 days of parent plan ending
  • New Job: Employer plan enrollment period
  • Marriage: Can add to spouse's plan
  • Moving: May qualify for marketplace enrollment
  • Income Changes: May become eligible for Medicaid
Building Your Healthcare Team

Complete Adult T1D Care Team

Core Providers

Essential

  • Endocrinologist: Primary diabetes care (3-4x/year)
  • Primary Care Doctor: General health, sick visits
  • Ophthalmologist: Annual dilated eye exams
  • Dentist: Twice yearly cleanings (T1D increases risk)

Additional Support

  • Diabetes Educator: Advanced management skills
  • Dietitian: Nutrition counseling, carb counting help
  • Mental Health: Therapist for diabetes burnout, anxiety
  • Podiatrist: Foot care if needed

Appointment Frequency Guidelines

  • Endocrinologist: Every 3-4 months (more often if struggling)
  • A1C Labs: Quarterly at minimum
  • Annual Comprehensive: Lipid panel, kidney function (microalbumin), TSH
  • Eye Exams: Yearly dilated exam with ophthalmologist
  • Dental: Every 6 months
  • Foot Exams: Yearly comprehensive at endo, daily self-checks
Transition Success Checklist

You're Ready When You Can:

  • ✓Schedule and attend your own medical appointments
  • ✓Order and manage your prescription refills independently
  • ✓Understand your health insurance coverage and how to use it
  • ✓Explain your diabetes management to new providers
  • ✓Know your current medications, doses, and timing
  • ✓Advocate for yourself and ask questions
  • ✓Handle sick days and insulin adjustments independently
  • ✓Contact your healthcare team when you need help

Remember: Transitioning is a process, not an event. Give yourself grace as you build these skills!