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Advocacy & Leadership Skills

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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

Advocacy Basics

 

 

 

Boy writing on paper a list of opportunities and threats.

Cashi brainstorms during a youth leadership meeting.

 

 

 

 

 

 

 

 

 

 

Boy smiling with his dog.

Ben smiles with his dog, Baila.

Advocacy Tip Sheet - Kids as Self Advocates (KASA)

Speak Up - A guide to self-advocacy - The Arc of Washington

Believe to Achieve Worksheet - A worksheet for parents and their children about setting and reaching goals

Empowering Leadership A Systems Change Guide for Autistic College Students and Those with Other Disabilities - Autistic Self Advocacy Network (ASAN)

Civil Rights and Advocacy Resources - Kids as Self Advocates (KASA)

WikiAdvocacy - Provides information on founding and growing an advocacy organization from fundraising to detailed explanations of issues, skills, and creating a registry and samples repository.

Voting: It's Your Right - The Boggs Center on Developmental Disabilities

Spanish Version

Tools for Advocacy - Family Voices of California Advocacy

Wrightslaw Home - Provides information about special education law, education law, and advocacy for children with disabilities for parents, educators, advocates, and attorneys.

Assumptions - Video about a woman's struggle with muscular dystrophy and the assumptions people make about her

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 planning, implementation and sustainability of genetic services 

Creating a Patient and Family Advisory Council: A Toolkit for Pediatric Practices - National Initiative for Children's Healthcare Quality (NICHQ)

Self-Advocacy For All: Stories from Self Advocates - Research and Training Center on Community Living at The University of Minnesota

Leadership Skills and Trainings

 

 

Urban, Underserved & Unbelievably Powerful! - Parent Leaders of CYSHCN Parent Leadership Presentation

The Art of Collaboration and Negotiation - Family Navigator Training from Family to Family Network of Virginia

Leadership Training for Special Education Advisory Committees - Building Local SEACs for Better Special Education Services and Student Outcomes

Partners in Policymaking - Online Courses Online e-courses on advocacy, policymaking, and telling your story 

Pasosprograms's Channel - SPANISH - Videos on skills to educate peers, facilitate access to resources, and bring ideas for change from communities to health service providers and decision-makers.

Guided Action Plan Worksheet - A worksheet on creating a plan of action after making a decision

Creating Agreement, Conflict Resolution, and Collaborative Problem Solving - Statewide Parent Advocacy Network

Creating Agreement, Conflict Resolution, and Collaborative Problem Solving - SPANISH - Statewide Parent Advocacy Network

Nothing about Us without Us - Presentation on Family Involvement from Parent to Parent of Virginia

Family Support, Culture and Disability Training - TASH

Participant Workbook

Trainer Workbook

Training Curriculum

Leadership in Advocacy - TASH

Participant Workbook

Trainer Workbook

Best Practices for Joining and Participating on Advisory Committees - Genetic Alliance

The Pebble in the Pond…Engaging Culturally Diverse Families in Advocacy - Statewide Parent Advocacy Network

Promoting Empowerment and Independence: Self Advocacy Training Modules - Self Advocate Coalition of Kansas (SACK)

Getting Involved as a Parent

 

 

 

Girl standing with her toy shopping cart.

Stephanie plays with her toy grocery cart at home.

Parents as Presenters Workshop Participant Guide - Pennsylvania Natural Allies

Video Presentation on Parent Advocacy - Diana Autin from the Statewide Parent Advocacy Network (SPAN)

Family Guide for Serving on Groups that Make Decisions - Wisconsin State Professional Development Grant (SPDG)

Making an Impact: Representing the Family Voice on Committees and Advisory Councils - Statewide Parent Advocacy Network

Board Member Agreement Form - Family Connection of South Carolina

Involving Families as Advisors (for Professionals/Orgs) - Center for Children with Special Needs

Involving Families as Advisors (for Families)- Center for Children with Special Needs 

Building a Family Network - Statewide Parent Advocacy Network

Parent Leadership 101 - Parent Leadership Presentation

Together, We Can Move Mountains: Parents as Leaders in Improving Systems for Children and Families - Statewide Parent Advocacy Network

Parents as Collaborative Leaders - Parents as Collaborative Leaders: Improving Outcomes for Children with Disabilities is a national partnership between the University of Vermont, PACER Center, and several other parent and advocacy organizations.

Tools for Sharing Your Message

 

Further Your Mission: Using internet tools and Social Media - Parent to Parent of Georgia

Advocating Through Letter Writing - Parent to Parent NYS-Family to Family Health Care Information Center

Creating Effective Brochures - Genetic Alliance 

Social Media 101: How to Get Started with Facebook and Twitter - Family Voices, Contact: Jennifer Akers, f2fhic.fv.indiana@gmail.com

Social Media 110: Learning More about Facebook and Twitter - Family Voices, Contact: Jennifer Akers, f2fhic.fv.indiana@gmail.com


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