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Riley Children's Health

Riley Teen Leadership Council

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If you are a teen (or parent of a teen) with a chronic medical illness like cystic fibrosis, lupus, diabetes or cancer, then you have a unique set of life experiences. Long before adulthood, you’ve met challenges that few people outside your family and healthcare team fully understand. After a lifetime of appointments with doctors, hospital stays and daily medications, you may feel “different” from other teens.

Join the Riley Teen Leadership Council (RTLC), and you’ll find a group of peers, mentors and healthcare leaders who “get you” and your family like no one else can. RTLC is offered free of charge to support you (and your parents and caregivers) as you transition to adulthood.

Your participation connects you with college-age mentors (18 to 25 years old) living full, successful lives while dealing with their own chronic medical illness. You’ll work together with a two-fold purpose:

  • To make a difference in your community
  • To learn and practice vital leadership and self-advocacy skills

RTLC is based on the Positive Youth Development model, a proven method for personal growth founded at academic centers such as Duke University, Stanford University and Brown University. Our program is part of a larger study to learn more about how these ideas can make a lifelong difference for teens with chronic health problems.

A team of Indiana University School of Medicine resident physicians leads the program and facilitates discussion around the challenges and rewards of living with a chronic illness. These resident doctors are especially interested in your development because they are preparing to practice in three areas: pediatrics, adult psychiatry and child/adolescent psychiatry.

About RTLC

About RTLC

Here are some frequently asked questions to help you learn more about becoming involved in RTLC.

Who can join Riley Teen Leadership Council?

Teens ages 13 to 17 with a chronic medical illness can participate. Parents are expected to attend.

How do I join?

Most teens come to RTLC through referral from a doctor who manages their health. We also enroll students and parents who refer themselves as long as their condition is considered relatively stable.

Where are the meetings?

We meet at Riley Hospital for Children at IU Health in Indianapolis, Indiana.

When are the meetings?

Our calendar includes nine monthly dinner meetings from 5:30 – 7:30 pm during the academic school year.

What can I expect from the meetings?

  • When you join RTLC, you become part of a community of families with similar experiences and struggles. Each meeting covers issues of interest to you and your family. In these open forums, everyone’s opinion is valued and everyone’s privacy is protected.
  • We have dinner together for the first 30 minutes. After dinner, parents and teens divide into two separate groups and engage in 75 minutes of programming designed for their needs and interests.
  • Teens plan the group’s annual community service project and discuss the theme for each session when they gather with their mentors.
  • The two groups reconvene and recap during the final 15 minutes.

What are examples of issues teens explore?

  • How to take charge of your own healthcare needs

  • How to give your medical history in an emergency situation

  • How your condition affects family and social relationships

  • How to manage your medication and treatment routines

  • Coping and self-care skills to help you manage depression or anxiety

  • Learning to deal with romantic relationships

How much does it cost?

The program is free of charge. Dinner and parking also are complimentary.

What’s involved with the annual community service project?

Monthly meetings allow time to plan and lead a community service project that provides education about health matters such as chronic illness and positive health behaviors.

Previous projects have included art displays, public service announcement videos, T-shirt designs, and school education and advocacy events.

Resources

Resources

Below, you’ll find resources and forms that can help you with chronic illness.

Riley Teen Leadership Council. Download this brochure to learn the basics of becoming involved in the Riley Teen Leadership Council.

About Special Kids (ASK). ASK works throughout the state to give support and provide information and resources to families of children with special needs. ASK has a parent liaison in each region of the state with a central office in Indianapolis.

Centers for Disease Control and Prevention (CDC). Visit the National Center for Chronic Disease Prevention and Health Promotion, a CDC resource to support families affected by chronic medical conditions.

The Center for Youth and Adults with Conditions of Childhood (CYACC). CYACC is a program at Riley Hospital for Children that offers services to help teens and young adults affected by chronic health conditions, chronic mental illness, intellectual disabilities or physical disabilities.

INSOURCE. This organization trains Indiana parents, caregivers and service providers to find and/or deliver appropriate education and services for family members with disabilities.

Family Voices. Indiana’s Family Voices chapter provides support and education for families with special needs children and youth.

For Health Professionals

For Health Professionals

Primary care physicians and chronic disease specialists are invited to suggest teens who may benefit from this development opportunity. We recruit new candidates year-round and are always open to welcoming new teens. Referring physicians may contact us at RileyTripleBoard@gmail.com.

Related Research

The Adolescents with Chronic Illness Program at Riley Hospital for Children is an IRB-approved study that measures outcomes, including knowledge of the medical home and readiness to transition scales using pre- and post-surveys. We have presented research at national conferences and collaborate with other major academic universities around the country that run groups like ours.

Related Education

Riley Hospital for Children offers training for Indiana University School of Medicine (IUSM) resident physicians who want to combine experience in three areas of study: pediatrics, adult psychiatry and child/adolescent psychiatry. Residents undergo a five-year training that prepares them to care for youth and families from all backgrounds in a nationally-ranked pediatric hospital. To learn more about our residency program, visit the Department of Psychiatry at IUSM.

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Designated as Best Children's Hospitals by U.S. News & World Report, Ranked in 10 Specialties in 2020-21

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