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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

Resources: 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

Maternal Depression: First Steps Families and Advocates Can Take to Help Mothers and Babies Thrive- National Institute for Children's Health Quality

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

Resources: 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 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)

Resources: 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

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

Resources: 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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