Toolkit for Families of Children with Special Healthcare Needs - Hearing Loss
Tool for Developing Roadmaps
Creating a Roadmap for Families in Your State
This section is for family leaders and others who are interested in creating a parent roadmap of the 1-3-6 model (newborn hearing screening by 1 month, diagnosis by 3 months, intervention by 6 months) in your state. The Collaborative teams in the Improving the System of Care (ISC) Project that worked on these roadmaps found it most beneficial to create them with an emphasis on a Family Driven Model for the development of these roadmaps, since this is a product directed to parents. Input for technical information from audiologists, early interventionists, physicians, Title V Directors and others is also imperative to ensure the integrity of the information.
The Family Driven Model
Often, when working on a product aimed at informing and helping families, it is developed by professionals, and then input from family leaders is asked for – to review drafts, give input, and at worst, ‘rubber stamp’ it so that a checkmark can be added to someone’s list that ‘families were involved in the development’ of such. The family driven model of involvement is a process in which family leaders take primary responsibility for developing the product, and then ask for input from others. An example of this is the writing style of such, so that a more informal and/or ‘colloquial’ use of terminology creates a ‘from us to you’ type of writing. Another example of this is information that families feel are important to get to other families may not always be included from a ‘systems perspective’.
Examples from the Colorado Parent Roadmap
• In the section regarding the ‘diagnostic process’ for families, items including a parent’s right for unsedated ABR’s was included in the information.
• The ‘end’ of the roadmap. As parents, we know that this is just the beginning of the journey, so the roadmap ends with a statement that highlights this:
“The Road Less Traveled: This roadmap was created by parents and professionals FOR parents, to help you through the initial ‘system’ of care and resources as you begin your journey. The destination is of course ‘off the map’, but we hope that some of the information and resources in this interactive roadmap has been of benefit to you. We would love to hear from you. What was helpful? What kind of information do you wish there was more of? We will be adding more resources to this roadmap as time goes on. We would love to have your input. Email us and contribute to the conversation.”
The Roadmap samples that are linked to below were created to serve as a safety net for families to ensure that babies could receive timely screening and follow up care for hearing loss. Families we spoke to were not aware of the "screen by one month, diagnose by three months, and enter intervention before six months of age" guidelines set by the Early Hearing Detection and Intervention (EHDI) system. The earlier a baby is diagnosed, the better off he or she is for optimal development.
You can use these samples to develop your own roadmap for your state-specific needs:
• The Colorado Road Map
• Examples from the NICHQ Collaborative and various states
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