Best Practices in Self-Advocacy Skill Building

Links updated, March 2019

The Parent Center network has a common list of 14 priority topics we are expected to address. The list comes to us from the Office of Special Education Programs (OSEP) at the U.S. Department of Education.

Welcome to the Hub page that focuses on the priority topic of “best practices in self-advocacy skills building.”  Here, you’ll find quick connections to materials and resources you can use with youth with disabilities and their families to build their abilities to advocate for themselves. Items marked with ** are designed to be parent-friendly.

• What is self-advocacy, and why is it important?
• Resources for youth themselves
• Fact sheets, toolkits, and training materials on self-advocacy
• Resources in the Parent Center network
• Resources in other languages
• Don’t forget to search the Hub!!

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What is Self-Advocacy, and Why is It Important?

Wrightslaw answers these two questions quite succinctly, so we’re going to quote from them. Speaking directly to those with disabilities but relevant to all of us:

What is Self-Advocacy?
Self-Advocacy is learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination.

Why is Self-Advocacy Important?
So that you have the knowledge needed to succeed and are given the chance to participate in decisions that are being made about your life.

Parents may need some orientation to this topic, too. Here’s one such resource.

Training Video on Self-Determination.  
Especially for parents (25 minutes) | Available in English and Spanish.
Do you want to help your child with a disability live an included and productive life? Your son or daughter needs self-determination skills such as making choices, setting goals, and self-advocacy. The Self-Determination video will provide you with a foundation of how to teach these skills to your son or daughter. Also available in Spanish (Cómo ayudar a nuestros hijos a desarrollar su auto determinación). From the Utah Parent Center.

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Resources for Youth Themselves

There are resources about self-advocacy for parents, families, and service providers, but what about resources that speak directly to the young person with a disability? Fortunately, there are many. We’ve listed a few starters below (believe us, there are more!). Access them, share them, use them with young people with disabilities.

Learn about Self-Advocacy: Speaking Up.
For youth with intellectual disabilities. 
This resource-rich website pairs minimal text with short, step-by-step video clips of youth themselves talking about self-advocacy. Includes a map to help youth identify self-advocacy groups in their state. Lots of video stories from self-advocates on key topics such as the ADA, education, jobs, health, home, and self-determination.

Youth in Action! Becoming a Stronger Self-Advocate.
Speaking directly to young adults with disabilities, this resource defines self-advocacy, describes why it’s important, and suggests 4 steps to becoming a stronger self-advocacy. Youth-friendly, brief, to the point, this resource is a product of the National Collaborative on Workforce and Disability for Youth (NCWD/Youth).

Youthhood.org.
Youthhood is a  not-to-be-missed website for youth. This fun and engaging site will remind students with disabilities that they are not alone as they explore community and build a future. It’s chock-full of great resources and information. Introduce young people to the site by starting with “What Can I Do Here?“

Self-Advocacy: Find the Captain in You!
Video (10 minutes) | A funny and fun way to introduce self-advocacy to young people with disabilities.
Follow two hosts with dry humor on their morning news talk show, Midday In The Valley, as they explore and discover the powerful force of a term called: Self Advocacy. Covering two interviews and speaking with their ever helpful side kick, Captain Self Advocacy (yes he is really wearing tights!), they come to understand why understanding what you’re good at, what you need assistance with, and how to effectively communicate with people in life is very important for everyone, especially youth with disabilities. Remember: Nothing About You Without You!

Speak Up! Using What You’ve Got to Get What You Want
Engaging multimedia tool that easily guides youth through training.
This tool helps youth with disabilities learn how to speak up and advocate for themselves. With this tool, they can map out personal goals, learn about their rights and responsibilities, learn the best way to ask for help, and get organized.

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Fact Sheets, Toolkits, and Training Materials on Self-Advocacy

Oh, where to start, and what to list? There’s an amazing amount of materials out there designed to help schools and families prepare young people with disabilities to advocate for themselves. In fact, many more than we will list here. We know you haven’t got all day, so start with these resources and see how they fit your learning and training needs.

Whose Future Is It Anyway? (2nd edition)
Subtitled “A Student-Directed Transition Planning Process,” Whose Future Is It Anyway? helps prepare students for their IEP meetings and gain self-determination skills through six sections that contain 36 lesson sessions. The lesson package comes with a Coach’s Guide that outlines the lessons, how to teach them, the roles of the students and teachers, as well as expected outcomes.

Building Self-Advocacy and Self-Care Management Skills.
Here’s a handy list of suggestions and insights for parents to build their youth’s self-advocacy skills at home, especially with respect to health care and management. There are several videos, too.

Youthhood’s Curriculum Guide.
Youthhood.org’s purpose is to help young adults plan for life after high school.  The site also offers information, links, and interactive activities for adults who work directly with youth (including but not limited to teachers, youth workers, community leaders, parents, and other adult family members) to help youth plan for their futures. It can be used as a “stand-alone” curriculum or as a supplement to an established curriculum.

ME! Lessons for Teaching Self-Awareness & Self-Advocacy.
The ME! Lessons were developed to help educators teach students critical transition skills. It’s quite a comprehensive package. There are 23 lessons in all, with each taking about 45-60 minutes to complete (not including extension activities). Lesson 1 focuses specifically on self-advocacy. Other lessons help students learn their rights, improve their communication skills, and learn how to advocate for themselves in high school, on the job, and in a postsecondary education setting. Each  lesson plan includes student objectives, materials, lesson opening, procedures, closure, and student evaluation.

My Health, My Choice, My Responsibility.
My Health, My Choice, My Responsibility is an 8-session curriculum-based group training program focusing on advocating for healthy choices on a daily basis. The emphasis is on gaining knowledge to make informed choices and the skills and tools needed to speak up for good health. Topics include being a self-advocate at medical appointments, physical activity, nutrition, being safe and healthy at home, and feelings. Participants learn the material through discussions, exercises, and visual aids. The link above will take you to a subsection, where you’ll need to scroll down a bit to find the curriculum (go just past “Online Videos”).

Personal Preferences Indicator: A Guide for Planning.   
For use with individuals with significant developmental disabilities | Available in English and Spanish. 
This is a tool to assist in planning with and for a person with a developmental disability. It’s a guide, not a checklist, for accessing information about the person’s preferences across 7 domain areas. The items are used as cues or prompts for discussing with the person or their family/friends the important considerations in developing a plan of support. Domains explored include the individual’s favorites, emotions, socialization, self-determination, physical self, health, and family roles. Also available in Spanish | Los Indicatores de Preferencias Personales: Una Guía para Planear.

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Resources in the Parent Center Network

Self-Advocacy: Tips for Teens.
From the Utah Parent Center, this short tip sheet is a good place to start learning about self-advocacy. At the bottom, enjoy the two videos of youth with disabilities talking about their own self-advocacy.

In the Driver’s Seat: Six Workshops to Help with Transition Planning and Self Advocacy for Youth with Special Needs.
From the Vermont Family Network, In the Driver’s Seat is a series of six workshops for youth in transition from high school to adult life. Although this curriculum is suitable for all students, it was developed for students with special needs particularly those with development disabilities. During the workshops, youth experience hands-on learning that helps them achieve adult, life goals. With encouragement and support, young adults identify their skills, interests, and needs, and work toward improving their ability to self
advocate.

Self-Advocacy.
This webpage of the Oklahoma Parent Center briefly explains what self-advocacy is and why it’s important, and then offers multiple resources on the subject, including articles, podcasts, and helpful organizations and agencies.

Dude, Where’s my Transition Plan?
Includes checklists you can use with youth.
Speaking directly to youth with disabilities, this 28-page booklet comes from PEATC, the PTI for Virginia. In addition to multiple transition planning worksheets, the booklet also includes several checklists and discussions of self-advocacy.

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Resources in Other Languages

Autodefensa: Una habilidad valiosa para su hijo adolescente con DA.
Es importante que los niños aprendan técnicas de autodefensa para tener éxito en todas las etapas de sus vidas. En el pasado, la autodefensa era un término aplicado principalmente a adultos con discapacidades, pero recientemente se ha hecho más énfasis en la enseñanza de esta técnica a preadolescentes y adolescentes. Este artículo ofrece consejos para desarrollar técnicas de autodefensa.

Autodeterminación | Módulos de aprendizaje para el interventor de sordo-ciegos.
A través de estos módulos, los interventores de sordo-ciegos aprenderán los cuatro componentes de la autodeterminación e identificarán oportunidades de autodeterminación dentro de estudios de casos basados en el video. Llevarán a cabo análisis ambientales para determinar qué oportunidades existen para que los alumnos sordo-ciegos desarrollen habilidades de autodeterminación con los socios en entornos escolares reales.

Cómo ayudar a nuestros hijos a desarrollar su auto determinación.
¿Desea ayudar a su hijo(a) con discapacidad a tener una vida productiva y una vida de inclusión en su comunidad? Su hijo(a) necesitará desarrollar habilidades de auto determinación, tales como establecer metas, cómo tomar decisiones, y habilidades de auto abogacía.  Este video sobre la auto determinación servirá de fundamento para enseñarles estas habilidades.

Los Indicatores de Preferencias Personales: Una Guía para Planear.
Esta guía no es una lista de verificación, sino una guía para tener acceso a información sobre las preferencias de una persona con una discapacidad intellectual significante. Los puntos listados son para ser usados como señales o llamados para recordarle temas importantes que deben tratarse en sus conversaciones con la persona. Estas conversaciones informales pueden darle una línea base de preferencias a partir de la cual se puede empezar a planear.

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Have a resource you’d like to recommend?
It’s hard to find information in other languages about how to use data to advance school reform efforts. If you know of a resource that’d be helpful to other Parent Centers and the families they serve, please share the news with Lisa Küpper, product development coordinator, at the CPIR: lkupper@fhi360.org. Thanks!

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Don’t Forget to Search the Hub!!

Since this Priority Page was originally created, we’ve added many “Self-Advocacy” resources to the Hub library. These are easy to find! Just use the link below:
https://www.parentcenterhub.org/category/topics/self-advocacy

There’s a SORT BY drop-down menu above the resources that will be listed. Set the drop-down to “Date (Newest).” And there you’ll have the latest resources on self-advocacy!

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