Center for Youth & Adults With Conditions of Childhood

The center helps youth ages 11 to 22 with chronic health conditions move from seeing pediatric physicians to adult care physicians. Special healthcare needs may include:

• Chronic health conditions
• Intellectual disabilities
• Physical disabilities
• Chronic mental illness

A smooth transition sets the path for a better future for youth and their families. The teen years can be a vulnerable time, including urges to try risky activities. Youth need their families through this time, and parents need the skills to support and educate their children.

Youth with health conditions may have trouble following their treatment plans or navigating the health system on their own. Self-management and decision-making skills are needed for a healthy adult life. Parents may need to step back as managers of their child's needs. They can let their child grow and learn new skills while still providing safe support.

The CYACC offers consultation and training to help youth and their families. The transition process should start early, be gradual and involve small steps to achieve the long-term goal of successful adult self-management. The CYACC team supports families as they progressively give their children more responsibility.

Youth learn to move from the protective setting of pediatric care to the more independent self-management found in the adult care system. Parents learn to serve as ongoing and important members of their child’s adult support system. The CYACC prepares young adults to properly transfer their health information to new adult providers and develop trusting relationships with their new healthcare teams.

There are some youth with neurocognitive disabilities who may not achieve full self-sufficiency as adults. They retain a need for significant support from their caregivers. The CYACC assists these youth and their families to adapt to the adult model of care for their particular needs.

The CYACC is a unique, creative solution to the healthcare issues children face during teen and young adults years. The program has received local and national recognition and serves as a training model for other healthcare systems throughout the country. Healthcare professionals visit Riley at IU Health from across the country to learn more about creating their own transition programs.

The CYACC participates in collaborative, international research to build our knowledge and understanding of the needs of youth, families and providers during the process of transition. Each patient at the CYACC has an opportunity to participate in our research registry. This database is used to study the best approach to deliver transition care.

The CYACC educates other health professionals to improve quality of care. The members of the Transition Steering Committee at Riley at IU Health work together to support all departments in their efforts to improve transition care.

Your First CYACC Appointment

At your first transition visit, our team of social workers, nurses and doctors will work with you and your child to look at strengths, current services and future goals and needs. Topics that will be discussed include:

• Independent living. Does your child plan to live alone? Are you teaching your child new skills?
• Healthcare financing. What financial needs may your child have, including insurance coverage? How will their health insurance change as they age into adulthood?
• Medical home/primary and subspecialty care. Which doctors will your child need as an adult? How and when will changes to the adult system happen?
• Health habits. Does your child have healthy habits? Do they need to get rid of bad habits?
• Self-management. Does your child understand how to take care of their health? Do they take their own medicines, make appointments and talk to the doctor on their own? What skills can they practice?
• Mental health. Does your child manage their emotions safely? Do they need help with stresses?
• Decision making. Can your child understand and make good decisions about their own health? How can they learn skills in making good decisions?
• Education/employment. Will your child continue in school after high school? Will your child find work to meet their interests?
• Family/caregiver support. Do you and other caregivers have the support you need?
• Socialization. Does your child have friends? Do they participate in social activities?
• Transportation. How does your child get places? Can they provide their own transportation?

Based on these assessments, you and your child's CYACC team will set up a transition plan that includes goals to move your child toward a good transition. Goals for children may include working on healthy habits like personal hygiene, eating healthier and being physically active. Other tasks may include practicing calling in their own medicine refills or scheduling an appointment.

The CYACC team will help you summarize your child’s healthcare records. New healthcare providers can use this summary to become familiar with your child's healthcare needs. A good summary might include:

• Demographics
• Health insurance information
• Current healthcare providers and services and their contact information
• List of chronic conditions
• List of medicines, equipment and other treatments
• Emergency care recommendations
• Summary health history, including important procedures, surgeries and hospital admissions
• Family history
• Immunizations
• Specific chronic condition information

After the appointment, our care coordinators help you and your child work your way through the transition process.