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Expansion Through Partnership

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Guide Content | Chapter 5: Ensuring Sustainability

Program Spotlight: Care Coordination: Empowering Families Parent Training Curriculum

Region 4 Midwest Genetics Collaborative


In 2013, Region 4 Midwest Genetics Collaborative developed the parent training curriculum Care Coordination: Empowering Families. The curriculum is a day-long training for parents on skills, knowledge and resources for coordinating care for children with complex needs in partnership with a medical home. Participants learn to improve communication and coordination between multiple providers, navigate the health care and insurance systems, how to identify reliable resources and the importance of self-care and peer support. The curriculum uses a combination of facilitation, hands-on activities, videos and other methods designed to engage the adult learner.  In recognition that their time is important and to limit common attendance barriers, participants were provided a $150 stipend to cover their time, mileage and assist with potential childcare costs.

In 2013 Region 4 conducted trainings in all 7 states within the Midwest Region (Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio and Wisconsin) by working with partners in each state to recruit and train families.  These partnerships, such as Michigan’s Children’s Special Health Care Services, Kentucky’s Commission for Children with Special Health Care Needs, Family Voices of Indiana, and the Sickle Cell Disease Association of Illinois, increased Region 4’s outreach and enabled them to share the curriculum with families with children who have a variety of special health care needs.  The infrastructure provided by the regional genetics collaborative allowed for the coordination and evaluation of each training session while providing partners with a validated training curriculum that met the needs of their families within their respective states.  Region 4 Midwest plans to develop a train-the-trainer model to further disseminate the curriculum and reach larger populations, relying even more on partners to come together on this initiative.

Accompanying Resources:

This Care Coordination Training builds upon the guide created by the Region 4 Genetics Collaborative on Partnering with your Doctor: The Medical Home Approach- a guide for families of children with special health care needs. 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.

More information can be found on the Region 4 Midwest Genetics Collaborative website

Sharing Lessons Learned

How do you think having diverse partners has contributed to the success of the project?

Because of the structure of the Region 4 Midwest Collaborative, we already had connections in all seven states that allowed us to build an even larger network of partners for this project. By partnering with diverse partners, especially in the outreach and recruitment of training participants, we have been able to train a larger, more diverse population, thus expanding our reach within the region. We reached out to partners that work with families and have common goals, being willing to partner at varying levels (i.e. financially supporting the entire training, providing food, providing space only, etc.) and providing partners with a validated training curriculum that meets the needs of their families within their respective states. Having partners benefitted the project greatly especially because we had limited financial resources for coordinating and conducting the trainings.

How did you evaluate this project?

Evaluation takes part in three stages. When individuals register, they are given a pre-training assessment that uses many questions from the National Survey of Children with Special Health care Needs (NS-CSHCN). After the training, a power-training evaluation is used to measure participant’s knowledge and understanding of learning objectives. A one-year post-training reassessment is used to evaluate growth in the time period since the training.

Do you have another question about this program? Click here to ask a question.

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