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AMCHP Virtual Training for Family Scholars: Documenting support systems with families of CYSHCN to inform individual and community level improvement efforts Kristen Hassmiller Lich, Steve Chall, Alice Wertheimer, Stacy Collins, Michelle Jarvis, Dorothy Cilenti February 3, 2015

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MCH leaders asked for help with systems issues There is a clear recognition that: We need to strengthen systems of care but its really challenging even to do things like coordinate between two subsystems, share data, ensure referred patients are fully cared for let alone MANY subsystems (schools, primary care, specialist care, mental health care, social support, recreation, ) In some states we have huge gaps; in others we have redundancy (I have 11 care coordinators!). Both are hard.

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Quick brainstorm What has caused you the most stress in your role as parent/caregiver for a child/youth with special health care needs in the past month?

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Quick brainstorm What has most supported you in your role as parent/caregiver for a child/youth with special health care needs in the past month?

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What we dont want Source: http://www.jachip.org/making-the-affordable-care-act-workhttp://www.jachip.org/making-the-affordable-care-act-work

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One inspiration: Care map Used with permission of Cristin Lind, durgastoolbox.com.durgastoolbox.com For more information on care mapping, visit http://www.childrenshospital.org/care-coordination-curriculum/care-mappinghttp://www.childrenshospital.org/care-coordination-curriculum/care-mapping

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Another inspiration: KY system map Kentuckys Early Childhood System Map for Providers helped them know where to refer their patients

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Another inspiration: Eco-maps

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System support maps System support maps offer a guided approach to help stakeholders think about and document a system from their perspective. This tool will enable you to graphically express your personal ongoing journey in support of the person with special health care needs you are responsible for. The process of creating this map can help you to clarify, demonstrate, document and troubleshoot the complex web of responsibilities, needs, resources, services, and ultimately the wish list involved in supporting your person with special health care needs.

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System support maps To construct system support maps, you should: 1.Clarify the system you want to study (set a boundary/scope) 2.Identify the stakeholders/roles to include (could be you!) 3.Get paper and markers or use our online tool (under development) 4.Ask anyone who is going to develop a map to carve out time and reflect; you might want to walk them through the exercise or give instructions and turn them loose

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System support maps As you map your system supports, what is your role/identity? Who are you, both name/initials and role you represent? Share any context/detail that helps ground your map What are your most important responsibilities? What do you see as the most important 5-8 responsibilities you face in your role right now? What do you need? For each responsibility, what do you most need to succeed (in general terms time, patience, knowledge, access to providers, etc)? What resources have you used? For each need, what specific resources have you tried in the past year (providers, community organizations, websites, etc)? What do you wish for? to improve any resource you use or address any unmet need?

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System Support Maps

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Role (context) and responsibilities

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Needs, resources, and wishes

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Before we leave the slides Now lets see a system support map up close, and meet the online tool! Any questions first?

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after the system support map tutorial Did it feel different to brainstorm about challenges and strengths using the tool? Is there anything that you wish was included?

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after the system support map tutorial How might you use this information?

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Practice calling out actions/targets for action and justifying them Please go back to the map we created together or to our example. Can you identify and justify one action step (or call for action) based on someone elses identified need?

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Stretch assignment Complete your own electronic System Support Map using the MCH WDC online tool Reflect on your diagram and identify the top 3 priorities for making positive change for your family Are you stuck on an important responsibility? Do you have an important unmet need? Is some resource not available, accessible, acceptable, affordable, or accommodating? Not working for some other reason? Is there some issue you face across responsibilities (a need or recurring barrier to resources)? Do you have a system support to acknowledge? Help others find it (and keep it around)!

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Stretch assignment Help another parent/caregiver complete their own electronic System Support Map using the MCH WDC online tool Guide them in reflecting on their own diagram and identifying the top 3 priorities for making positive change for their family Can they acknowledge any particularly helpful system supports? Reflecting on both maps, think about 2-3 things you could do this month to strengthen system supports in your community for other families What can we do to make our online tool easier to use and more useful in your system support mapping?

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Stay in touch! Wed be happy to talk more More than that, we need your help to improve this tool! Kristen Hassmiller Lich klich@unc.eduklich@unc.edu National MCH Workforce Development Center: http://mchwdc.unc.edu http://www.amchp.org/Transformation- Station/Pages/Home.aspx