Category Archives: Family Voices News

Resource E-blast Jan 2019

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Resource eBlast January 2019

Sharing Resources for Families of Children with Special Health Care Needs

This month our National Team at Family Voices put together our Resource E-blast and its all about Genetics! Here are some of the articles and links to get more information!

National Coordinating Center for the Regional Genetics Network

Have you ever wondered about genetic services? What are they? How do you know if they are a good option for your child? How do you get newborn screening results? How do you find genetic services near you?

Did you know that there is a National Coordinating Center for the 7 national regional genetic networks dedicated to improving access to quality genetic services for medically undeserved populations?

Why is There a National Coordinating Center and Regional Networks?

Why is there a National Coordinating Center and regional networks? As you will read, the Maternal and Child Health Bureau saw the need to not only improve access to services, but also promote education and partnership, and ensure genetic medicine translates into public health and health care services.

Find Your Regional Network: An Interactive Map

If the Coordinating Center is the big umbrella covering the U.S. with support, then the regional genetic networks are the ribs or arms of the umbrella that reach out directly to you! Click on the interactive map to link to your regional network and connect directly with staff and families who can help you navigate genetic services and so much more.

NCC Mission: To Improve Access

As the mission indicates, the Coordinating Center and all of the regional networks are committed to ongoing efforts to improve access for medically underserved populations… that means CYSHCN and their families! As such, there is arm of the umbrella dedicated to education and family support.

Learn More: A Webinar

Take a look at the latest webinar from the National Genetics Education and Family Support Center, “Highlighting Partnerships Between Family-Led Organizations and the Regional Genetics Network,” for a discussion on the benefits and importance of cross-collaboration between Regional Genetics Networks and family-led organizations. During this webinar participants share successful projects and information on how to undertake these partnerships in other regions.

Resources E-Blast- October/November 2018

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THIS ISSUE:  Many families in the U.S. recently navigated the transition from summer to school year. Families of children with special health care needs and disabilities often have multiple transitions in the pipeline.  This issue of the eBlast shares resources for a variety of types of transition.

 Transition “Starters” for Everyone   

For a place to start, check out this collection of resources on transition planning. Resources are divided by audience: general audience, parents, professionals, and students.

National Resource Center for Supported Decision-Making Resource Library

From the comfort of your own home, find a transition planning tool or a document that explains a transition-related policy or law. This online resource library–and also checkout the Research Library–shares resources, guides, and toolkits to help people with disabilities and older adults exercise their Right to Make Choices.

Health Care Transition Resources for Youth and Families 

This page from our partner, Got Transition, defines health care transition and has a set of frequently asked questions answered by experienced youth, young adults, and parents.

Share Your Supported Decision Making Story

The National Center for Supported Decision Making wants to hear from you!  Share your family experience using supported decision making to assist youth or adults manage their lives and make informed decisions. Use the story collection form or contact Morgan Whitlatch at mwhitlatch@dcqualitytrust.org.

Family Voices Resource Blast

Resource eBlast July/August 2018
Sharing Resources for Families of Children with Special Healthcare Needs
 
Back to School Checklists for CYSHCN
Back to school time is around the corner!  These checklists can help guide your planning to ensure your child/youth with special health care needs (CYSHCN) has a seamless return:
Looking for ideas of adaptive back to school supplies or supplies to contribute to classrooms? Let this list of ideas get your creative juices flowing!
Online options to get started with your shopping:
Have a tween or teen entering middle school this year? How do you support your child through the tumultuous time? Check out these tips from the Family Voices IMPACT project.

Part of transitioning to a new school year is figuring out how to ease kids from the more relaxed summer days and nights into a new school routine while continuing to get good sleep. This Family Voices resource addresses the tricky intersection of adolescence, sleep, and mental health.