For Families

Care Coordination Training: Empowering Parents When it comes to getting medical care for their child, the role of the parent is an important one. Often the parent has to work with many different people in addition to doctors. This training curriculum was created as a result of the R4 Care Coordination Workgroup. The purpose of the training is to provide parents with the skills, knowledge and resources they need to coordinate care for children with complex needs in partnership with a medical home. Parents of children with genetic conditions will learn advocacy skills, techniques to organize information and find reliable resources, navigation of health care and insurance systems, skills to increase communication and coordination between multiple providers, and methods for coping with stress. In 2013, the pilot trainings will being conducted to see if goals for the training and to gather input from parents on how we can improve the training. After the training, Region 4 will revise the curriculum and identify partners interested in working together to provide the training to other parents within the region as well as nationally. For more information, please contact the Region 4 Parent Coordinator, Kristen Hawkins at khawkins@mphi.org

Partnering with your Doctor: The Medical Home Approach is a guide to help families connect with their doctor, other medical professionals, and caregivers through a medical home. The guide is intended to be a user-friendly, hands-on tool to support families to move forward in obtaining and providing a medical home for their child. The guide provides definitions, examples, and tools to use when working with a doctor to develop a medical home and demonstrates how to seek culturally effective, compassionate care. It also provides a list of resources and links to organizations that support families and the medical home concept.

Transition Web Application:
Transition is a process…not an event, and should involve the family as well as anyone else who provides support and assistance to the youth. Region 4 has created a web application to assist young adults, parents and caregivers and providers, with transitioning to adult care particularly as it pertains to youth with special health care need due to a genetic condition. The easily accessible videos, tools and resources are provided specifically for Youth, Parents or Caregivers, and Providers, as well as general resources for anyone interested in learning about the transition process.

Click on the state links below to find out more information
about your state's genetics programs:
Illinois
Indiana
Kentucky
Michigan
Minnesota
Ohio
Wisconsin