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We address critical needs at each transition point in life, including birth, early childhood, school-age, adulthood and aging. Throughout our lives, we all face questions and search for answers that will help on the path toward fulfilling lives for ourselves and others.

Heartland Genetics Services Collaborative Transition Project

The purpose of this project is to identify the role of the genetics medical team in health care transition for youth with genetic and chromosomal conditions. We use that information to formulate a health care transition model that addresses the complex issues experienced by genetics service providers and patients.

The training, interventions and research studies aim to expand and improve:

  • Health care access
  • Patient self-determination
  • Patient independence with self-care
  • Clinic-based transition practices
  • School-based care
  • Access to community support
  • Connections with service providers
  • Transition readiness skills

Transition Consult Training

This training for geneticists and genetics counselors is designed to address some of the key elements necessary for making successful transitions from pediatric to adult health care. Participants will use a new and innovative method to address challenges that patients face in the transition process. Participants will also gain an understanding and awareness of the complexities of care and everyday realities for adolescents with genetic conditions. The role of genetic counselors in the transition process will also be analyzed and discussed.

Medical Education Curriculum Guide

This guide is a “how-to” for medical professionals working with patients with genetics conditions as they transition from pediatric to adult medical care. This guide includes the key elements from the consult training and addresses how to implement two important tools, the Transition Engagement Guide and Doc Talk. The curriculum guide also addresses the topics of social capital, self-determination and the concept of supports as they relate to health care transition.

Adult Provider Interviews

We are currently conducting interviews with medical providers who serve adults with genetic conditions. The goal of this project is to study trends and thoughts in the medical world regarding health care transition from pediatrics to adult care. This study will address how to better prepare medical professionals, patients and families for a coordinated care transition.

Resident Education

Resident education is designed to help medical residents better understand and address the health care needs of youth and young adults with disabilities and/or significant health or genetic conditions. Our efforts are focused on youths' transition from pediatric to adult medical care. The residents participate in a variety of activities that promote increased expectations for their patients.

Resident education improves awareness of the complexities of care and everyday realities for these adolescents while addressing issues and challenges in the field. The residents demonstrate their understanding by:

  • Incorporating principles of health care transition
  • Using problem-solving skills to address the essential functions of quality healthcare transitions
  • Engaging patients, family members, health care professionals and others in the transition process

TransitionInAction Clinic

The TransitionInAction Clinic is an innovative method developed by the Center for Disabilities in collaboration with the Heartland Genetics Services Collaborative. The goal of the clinic is to improve the post-school outcomes and quality of life experienced by adolescents with disabilities and/or chronic health conditions as they move to adulthood, including integrating education, health, employment and independent living. The clinic brings together all of the elements of the transition process into a day-long event that involves interviews, assessments, discussions, activities and information sharing with an experienced team of representatives involved with transition.

Driven by the young adult's and family member’s vision for the future, the clinic highlights possibilities and helps develop a blueprint of steps to get there. Through their clinic experience, we provide the individual and family with a tool that can help inform their transition team on new ideas and helpful resources.

Heartland Genetics Services Collaborative Individual Healthcare Plans Project

Individual Health Care Plans (IHPs) are written documents used in schools to communicate students’ health conditions and explains their care and accommodation needs. An IHP helps ensure that all necessary information is considered to maximize each student’s participation and performance in school.

This project is designed to conduct a training and research study focused on effective methods for creating and using health care plans in order to better meet students’ individual needs. Study components include training with hands-on practice using a toolkit to become skilled and confident in this model for school-wide use. All participants in the study will also join an online community of practice for additional learning and assistance throughout the school year.