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Special Edition: Title V Technical Assistance MeetingExpand Special Edition: Title V Technical Assistance Meeting
Title V Technical Assistance Meeting

 Member to Member

​​How does your state incorporate family and consumer engagement into your quality improvement efforts?

Sarah Cox
Principal Planner, Children and Youth with Special Health Needs, Minnesota Department of Health

Sarah Mapellentz, JD, MPH
Family-Professional Partnerships Coordinator, Children Youth with Special Health Needs Section, Minnesota Department of Health

​The Title V Children and Youth with Special Health Needs (CYSHN) Program, within the Minnesota Department of Health, recognizes and actively relies upon the keen insight of families as we formulate communications, programs and policies that serve Minnesota's CYSHN. Our program's 2013-2018 Strategic Plan, developed in collaboration with families of children with special health needs, provides a framework upon which all of our quality and systems improvement efforts are based. A key vision element within the strategic plan is increasing family-professional partnerships and shared decision-making at all levels of the system. One way of increasing our partnership with families was through the development of the CYSHN Parent Workgroup which serves as an advisory resource for the MDH CYSHN Program. The Parent Workgroup consists of eight parents from diverse backgrounds who provide insight on program activities. Because we see these parents and caregivers as vital partners in our quality and systems improvement work, we provide financial reimbursement for their time and contributions, childcare cost coverage and mileage for travel.  

Together with the Parent Workgroup, the MDH CYSHN Program has adapted and applied a Community Engagement Continuum as a way to quantify our current level of partnership with families and determine where we would like to move in the future. The continuum moves from simply providing outreach to families, to having strong, bidirectional shared leadership. Though historically our family engagement has focused on using families as consultants to gather input or feedback, we are moving toward having shared leadership in program activities. Some specific efforts that have assisted us in moving from simple engagement to true partnerships include:

  • Developing new standard operating procedures within units of the MDH CYSHN Program to ensure that parent engagement is involved in projects from the beginning.
  • Seeking parent input on the need for tools and how these tools should look before they are created, rather than only gathering feedback from parents on final products of educational materials, family letters, etc.
  • Having families of CYSHN present at staff meetings and at advisory groups talk about their own experiences in navigating the systems of care and support that surround CYSHN.
  • Ensuring that families of CYSHN are included as representatives on statewide advisory groups or initiatives that impact CYSHN and their families.

Throughout all of our efforts, we strategically aim to promote family partnerships as we improve and maintain the health of MN CYSHN and their families.

Michelle Hoffman
CYSCHN Program Family Engagement Coordinator, Washington State Department of Health

Washington incorporates many levels of family and consumer engagement into quality improvement efforts. Since 1999, the Washington State Department of Health (DOH) has had a dedicated, full-time position whose function is to support family engagement. Over the years as family engagement has become more and more of a proven best practice, family and consumer engagement in Washington has evolved to adapt to the changing needs of both families and systems planning. Like many government entities, Washington has had a number of reorganizations with respect to leadership of different agencies and organizational structures therein. This has created an increased need for collaboration and partnerships across systems.

Our current family engagement strategies have borrowed elements from collective impact and results based accountability in order to address the needs of our newly formed statewide family leadership network. We have created a state agency work group with the DOH family engagement staff as well as staff from our Part C Early Intervention Agency, our mental health agency and our developmental disabilities agencies. This group will serve as "backbone" support to increase internal agency capacity for meaningful family engagement and broaden family and consumer engagement opportunities at the state level. The statewide family leadership network has a steering committee which is made up of family leader organizations who are contributing strategies to engage families into a pipeline of leadership development with the goal of utilizing their experience and knowledge to inform systems planning. In the near future we expect to develop a logic model to align family and consumer engagement work with our block grant strategies.

​For more information, contact Michelle Hoffman, Family Engagement Coordinator, Washington State Department of Health.