Advocacy & Leadership Skills
When I look at my daughter today and think of how far we’ve come- that is why I advocate for other children and families – because when you are up to your neck in the mundane battle for your child’s life at the table, taking them to specialists and fighting with insurance companies – you do not have the time or knowledge to take that out to the world. Your world becomes your child’s health. But, for that family- one person’s advocacy can change their lives. That is why I advocate for Homocystinuria (HCU), metabolic and children’s healthcare.
-Story from a parent advocate
Resources : Advocacy Basics
What do you need to find?
Civil Rights and Advocacy Resources
Kids as Self Advocates (KASA)
Self-Advocacy For All: Stories from Self Advocates
Research and Training Center on Community Living at The University of Minnesota
Creating a Patient and Family Advisory Council: A Toolkit for Pediatric Practices
National Initiative for Children's Healthcare Quality (NICHQ)
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Creating a Patient and Family Advisory Council: A Toolkit for Pediatric Practices
Wrightslaw Home
Provides information about special education law, education law, and advocacy for children with d
Voting: It's Your Right
The Boggs Center on Developmental Disabilities
Tools for Advocacy
Family Voices of California Advocacy
Empowering Leadership A Systems Change Guide for Autistic College Students and Those with Other Disabilities
Autistic Self Advocacy Network (ASAN)
51.512331297324
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Empowering Leadership A Systems Change Guide for Autistic College Students and Those with Other Disabilities
The Life Rope : Engagement of Diverse Populations for Recruitment and Representation in Genetics
This is a paper about methods of including diverse communities and underserved populations in pla
51.512331297324
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The Life Rope : Engagement of Diverse Populations for Recruitment and Representation in Genetics
Assumptions
Video about a woman's struggle with muscular dystrophy and the assumptions people make about her<
WikiAdvocacy
Provides information on founding and growing an advocacy organization from fundraising to detaile
Speak Up - A guide to self-advocacy
The Arc of Washington
Maternal Depression: First Steps Families and Advocates Can Take to Help Mothers and Babies Thrive
National Institute for Children's Health Quality
51.512331297324
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Maternal Depression: First Steps Families and Advocates Can Take to Help Mothers and Babies Thrive
Resources : Leadership Skills & Trainings
What do you need to find?
Urban, Underserved & Unbelievably Powerful!
Parent Leaders of CYSHCN Parent Leadership Presentation
Leadership Training for Special Education Advisory Committees
Building Local SEACs for Better Special Education Services and Student Outcomes
Pasosprograms's Channel- SPANISH
Videos on skills to educate peers, facilitate access to resources, and bring ideas for change fro
Partners in Policymaking®
Online e-courses on advocacy, policymaking, and telling your story
The Art of Collaboration and Negotiation
Family Navigator Training from Family to Family Network of Virginia
Resources : Getting Involved as a Parent
What do you need to find?
Making an Impact: Representing the Family Voice on Committees and Advisory Councils
Statewide Parent Advocacy Network
51.512331297324
-0.13348316406245
Making an Impact: Representing the Family Voice on Committees and Advisory Councils
Family Guide for Serving on Groups that Make Decisions
Wisconsin State Professional Development Grant (SPDG)
Parents as Presenters Workshop Participant Guide
Pennsylvania Natural Allies
Board Member Agreement Form
Family Connection of South Carolina
Video Presentation on Parent Advocacy
Diana Autin from the Statewide Parent Advocacy Network (SPAN)
Resources : Tools for Sharing Your Message
What do you need to find?
Advocating Through Letter Writing
Parent to Parent NYS-Family to Family Health Care Information Center
Further Your Mission: Using internet tools and Social Media
Parent to Parent of Georgia
Creating Effective Brochures
Genetic Alliance
Social Media 101: How to Get Started with Facebook and Twitter
Family Voices, Contact: Jennifer Akers, [email protected]