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The Medical Home Portal is a robust and nearly “shovel-ready” option for developing a shared resource for your state’s CYSHCN, their families, and their clinicians. In providing a “one stop shop” for information and resources to support referral processes and care coordination, the Medical Home Portal, with your collaboration, will:
- Provide information about your state’s local community and professional service providers for CYSHCN and their families – Utah’s Services database
- Offer personalized, editable lists of resources and services for individuals based on their diagnoses, zip code, and age range – here’s an example for Hearing loss in a young child in Salt Lake City
- Provide information about caring and advocating for CYSHCN and about relevant resources for all stages of life from birth through transition-to-adulthood –For Parents & Families section
- Provide information and tools to support clinicians and parents in partnering to improve care and outcomes for CYSHCN in the Medical Home/Health Home model – For Physicians & Professionals - Building a Medical Home
- Offer a framework for enhanced collaboration with your state’s Family to Family Health Information Center. Most of the pages in our For Parents & Families section have been co-authored with Utah Family Voices staff.
- All this in the preferred language of your state’s CYSHCN and their families via Google Translate. Custom Spanish translations have been completed for the Diagnosis & Conditions FAQ pages (first choose “Spanish” from the Google Translate language widget). For Parents and Families - Diagnoses & Conditions FAQs – Down Syndrome
Though developed in and for Utah, the Portal was reprogrammed, with support from a National Library of Medicine grant (1 G08 LM007680-01A2) and a Children's Health Insurance Program Reauthorization Act (CHIPRA) Quality Demonstrations grant (1Z0C030547-01-0), to enable sharing its content with other states and regions around the country. The reprogramming takes advantage of a native XML environment and makes it possible to substitute another state/region's local services data so that it will be integrated into the content and available for browsing/searching.
The services data for Utah comes in large part from United Way of Salt Lake's Utah 2-1-1. Every state has a 2-1-1 Information and Referal organization, responsible for maintaining information on community health and human services. This may be an excellent place to start gathering services data for families with CSHCN in your state. Key questions to ask your 2-1-1 partners will be:
- Do they use the AIRS XSD standard and, if so, which version?
- Are the services coded using the AIRS taxonomy?
- Can the system export an XML file that contains the 2-1-1 data – either a full set or a set that is filtered to include only the service providers you will want included in the Portal? We generally filter out services that only apply to adults.
- Can they provide you with a sample file? Reviewing this would enable us to anticipate any other issues
Other partner states gather and maintain local services data themselves, or have other Information and Referral organizations with whom they work to share services information. Each state will be different and the Portal's central team can work with each specific situation.
And Nevada will soon be a partner.
If you are interested in partnering with the Portal, or just want more information, please contact us by using the Feedback form or by emailing firstname.lastname@example.org.
|Compiled and edited by:||Mindy Tueller, MS - 1/2015|
|Content Last Updated:||9/2016|