2395 Jolly Road Suite 100
Okemos, MI 48864
Phone:  (517) 324-7396Fax:  (517) 324-6027Toll-Free:  
Primary Contact(s):
Kristen Hawkins (517) 324-7396 - Parent Coordinator
Lisa Gorman (517) 324-7398
Jane Pilditch (517) 324-8391 - Parent Coordinator
Grant Abstract Summary:
Problem: Families of children and youth with special health care needs (CYSHCN) must navigate complex systems. A centralized resource center is needed to provide support and education in making informed decisions and assist families to partner in decision making at all levels. Goals and Objectives: The project proposes:
Goal 1: A parent/professional partnership is utilized in creating a system of care for CYSHCN in Michigan that is family centered, culturally competent, and appropriate.
Objective 1: Provide educational opportunities for families of CYSHCN that address; partnering in decision making, medical home, adequate insurance, comprehensive screening and transition to adult care.
Objective 2: Provide educational opportunities for professionals to build family/professionals partnerships and to promote a family centered, community based and culturally competent system of care.
Objective 3: Collaborate with the state committees and councils to address barriers and participate in opportunities to improve systems of care through the six national 2010 objectives for CYSHCN.

Goal 2: Michigan F2F HIC serves as a centralized resource center for families of CYSHCN and professionals involved in their care. Objective 4: Provide technical assistance, information and resources to families and CYSHCN so they can secure appropriate services.
Objective 5: Serve as a clearing house for information and support to Michigan families of CYSHCN, organizations, and providers.
Objective 6: Report trends and family concerns regarding health care coverage, resources, and support to relevant state agencies and organizations using quantitative and qualitative data.

Methodology: The project will utilize a Parent Coordinator to oversee the activities defined in the workplan. MPHI will collaborate with Children’s Special Health Care Services and other partners outlined below by creating a collaborative structure to assist families in partnering in decision making at all levels.

Coordination: Partners in the project include Michigan’s Title V program for CYSHCN, Children’s Special Health Care Services, the Family Center for Children and Youth with Special Health Care Needs, HRSA Core System Outcome National Centers, Condition specific National Centers, and state and community based advocacy organizations outlined in the workplan.

Evaluation: The project evaluation will include both “process” and “outcome” evaluations. The process evaluation will be conducted by means of documenting program activities and comparing them to the work plan goals, objectives and activities. An outcome evaluation will be conducted annually, and at the end of the project, to evaluate the impact of the project in accomplishing its identified, measurable outcomes.
Highlighted Activity:
Care Coordination: Empowering Families
In partnership with the Region 4 Midwest Genetics Collaborative, we provided the training, Care Coordination: Empowering Families. The goal was to provide a learning opportunity for parents of CSHCN to gain the skills, knowledge, and resources they need to coordinate care for their child with complex needs in partnership with a culturally competent medical home. Participants learn the concept of the medical home, advocacy skills, techniques to organize information and find reliable resources, tips to navigate health care and insurance systems including information on the ACA, skills to increase communication and coordination between multiple providers, transition planning, and the importance of peer support and coping with stress. Eighteen parents attended this one day training held in Detroit, Michigan. In an evaluation 100% of the participants stated they were likely to include new individuals on their child’s care team, that they see the role they play in their child’s health care changing as a result of the training, and agreed that they had skills and knowledge surrounding medical home, care coordination, transition, advocacy, and communication skills after the training.