Self-Advocacy

MODULE GOAL(S): To provide students with disabilities basic knowledge of self-advocacy skills needed to be successful in a college setting.

OBJECTIVE(S):

  1. To define self-advocacy.
  2. To identify the reasons for learning self-advocacy skills.
  3. To describe the differences between high schools and colleges.
  4. To identify the skills needed to be a self-advocate.
  5. To list activities for becoming a good self-advocate.
  6. To describe an example of a self-advocacy program.
  7. To provide a resource for college self-advocacy programs.
  8. To explain the relationship between leadership and self-advocacy.
 

INTRODUCTION:

This module provides basic knowledge of self-advocacy skills you need to be successful in a college setting and your adult life.

KEY QUESTIONS:

Several questions are important as you develop your self-advocacy skills. These are:

  1. What is self-advocacy?
  2. Why do I need to learn self-advocacy skills?
  3. What do I need to know to be a self-advocate?
  4. What activities can I participate in be a good self-advocate?
  5. How can I practice leadership?
  6. Are there courses that teach me to be a self-advocate?
  7. Are there any college programs that teach self-advocacy skills and where I can see what college is like?

What is self-advocacy?

When you speak up for yourself, when you decide what YOU want to do now or in the future, you are a self-advocate. Self-advocacy means understanding your strengths and weaknesses, developing personal goals, being assertive (meaning standing up for yourself), and making decisions. Self-advocacy also means communicating your needs and making decisions about the supports necessary to meet those needs (Martin Huber-Marshall, & Maxon, 1993; Stodden, 2000). This last point is visit important in the college setting, where you and you alone, will be responsible for getting the supports you need to best learn your coursework.

Why do I need to learn self-advocacy skills?

With self-advocacy skills, you’re going to have an easier time with your classes, getting the support you need, to show what you can do. Self-advocacy will give more control and direction in your life outside of school too. The main reason you need this information set the goals you want and to know how to make plans and get the help you need to achieve them.

When students don’t have the information and the skills they need to find their way in the college setting and don’t know how to self-advocate for themselves, they may not get good grades and many of them leave before completing their degree. By learning self-advocacy skills, you have a better chance of college success!

When you worked with other members of the Individualized Education Plan (IEP) team by speaking up and helping to develop your goals and a plan for achieving these goals, you have practiced self-advocacy skills. However, you will need to practice these skills even more in college because the way you get the services you need is very different than high school. The table[1] below shows you how college is different than high school.

Parental Role

Parents can get your records and can participate in the accommodation process

Parents cannot get your records and cannot represent you without your agreeing to this in writing

Parents are the legal advocates for you

You are the legal advocates for yourself

 

Instruction

Teachers modify curriculum and alter assignments as outlined in IEP

Professors are not required to modify, design, or alter assignment deadlines

You are expected to read short assignments that are discussed in class

You are assigned substantial amounts of reading and writing which may not be directly addressed in class

You may need to read assignments more than once, often listening in class is enough

You need to regularly review class notes and text material

Grades and Tests

IEP or 504 plan may include modifications to test format or grading

Grading and test format changes (e.g., multiple choice vs. essay) are generally not available. Accommodations in how tests are given (e.g., extended time, test proctors) available when supported by disability documentation.

Testing is frequent covering small amounts of material

Testing is generally periodic and may be cumulative, covering large amounts of material

Makeup tests are usually available

Makeup tests are seldom an option; if they are, you are responsible for requesting them

Teachers often take time to remind you of assignments and due dates

Professors expect you to read, save, and review the course syllabus to understand what is expected, the assignments and how grades are given.

Teachers often let you know if you are doing poorly or going to fail the course.

You are more responsible for tracking how well they are doing in courses.

Responsibilities for Studying

Tutoring and study support may be a service provided as part of an IEP or 504 plan

Tutoring generally does not fall under the requirements for Disability Services to provide reasonable accommodations. If you need tutoring, you most likely will have to seek out tutoring resources available to all college students. (Some colleges offer specialized LD programs for an additional fee.)

School staff often structure your time and assignments

You structure your own time and assignments

You may study outside class for as little as 0 to 2 hours a week and this may be mostly last-minute test preparation

You usually need to study at least 2 to 3 hours for each hour in class

What do I need to know to be a self-advocate?

First, you should know about yourself, your strengths, and interests. List the areas you want to improve. Your strengths are the skills you do well currently. Interests are hobbies or job areas you want to learn about. You will want to improve those areas you need for success. You must be able to talk about these things.

You must know about your disability and the things that are hard for you. You must know the accommodations you need and about laws that give you the right to go to college. As a self-advocate, you should have goals and know how to meet them. Self-advocacy means taking control of your life. Think about these questions:

Do you:

  • Shop for your own clothes?
  • Wake up with an alarm clock?
  • Have your own bank account?
  • Know how to eat the right food?
  • Know how much sleep you need to keep from being tired?
  • Know what to do in an emergency?

Finally, you need to know what you want, such as the kind of job, where you want to live and with whom, and what activities do you want to be involved in to have fun. These are called goals. It is important to have goals and a plan for achieving them. Going to college is not a goal, but it may be part of a plan for achieving some of the other things you want, such as a good job. If you know your goals and how you will achieve them, you can advocate for getting what you want. Do you know what your goals are the plan for achieving them?

If you find answering these questions difficult, you need to take control of your life by setting goals and developing a plan for achieving them. You may need to ask friends, teachers, and your parents to help with these skills. You may need to work on these skills before you go to college.

What activities can I participate in be a good self-advocate?

Here are some activities:

  • Ask your friends, teachers, and parents to be on your team to help you with your goals.
  • Remind them (and yourself) that you are the team leader.
  • Tell them what you want and how you want them to help you get what you want.
  • Be assertive, but don’t be too strong or demanding in telling them what you want.
  • Clearly state what you want and defend your right to get it.
  • Ask your team for help and advice, but all final decisions are up to you.
  • Evaluate the progress you are making towards your goals
  • Make changes if necessary.

There may be a support group for students with disabilities at your school. You can learn self-advocacy from these students. Seek them out. You can provide support to each other in solving any problems. It helps to talk to peers who have similar issues. Also, get to know someone with more experience on campus that cares about you. This could be an instructor, a staff member, or a graduate assistant. They can be a mentor and help you with any problems.

Your goals and your future belong to you!

How can I practice leadership?

Once you can self-advocate for yourself, you may want to think about advocating for others in your community. Community can mean your neighborhood, your town or city, your school, or a group of people with disabilities. Advocating for others is a form of leadership. You don’t need to be THE leader to be involved in leadership, but you need to take an active role in a group that has a mission to create change to improve the community. Such a group could have a mission to clean up the community, support a political cause, or advocate for disability rights.

Youth leadership can be looked at as (1) the ability to guide others to take action, influence their opinion and/or behavior, and show the way by leading the way (Wehmeyer, Agran, & Hughes, 1998); and (2) the ability to understand one's strengths and weaknesses, set personal and vocational goals, and have the self-esteem to carry them out. It includes the ability to know community resources and use them and to establish support networks to participate in community life and to effect positive social change.

Everyone needs five areas to learn and grow: Thriving, Leading, Connecting, Learning, and Working. Youth leadership programs emphasize the areas of Leading and Connecting, which research shows are especially important for youth with disabilities (Feber, Pittman, & Marshal, 2002). In addition, several aspects of developing youth leadership have been identified as being important to youth with disabilities including providing supportive adults (role models and mentors), personal leadership (goal setting, self-advocacy, and conflict resolution), and leadership opportunities (service learning, peer mentoring, leadership training, and organizational leadership).

It doesn’t matter what you do, but do something. You CAN a take leadership role. Here are some resources to help you get started.

The National Consortium on Leadership and Disability for Youth (NCLD-Youth)  is a youth-led resource, information, and training center for youth and emerging leaders with developmental disabilities. NCLD-Youth is taking a positive development approach to working with future disability leaders, and developing materials to better prepare them for the transition to adulthood, and leadership. 

The Youthhood Community Center provides youth with information about leadership roles and opportunities to gain and practice skills that will serve them throughout their lives. The Community Center also provides information on the benefits of mentoring and on finding or becoming a mentor. Finally, this neighborhood addresses getting involved in the community and how this can build skills useful in applying for postsecondary education and employment. 

The National Youth Leadership Network (NYLN) is dedicated to advancing the next generation of disability leaders by promoting leadership development, education, employment, independent living, and health and wellness among diverse young leaders in the United States. NYLN host a national conference, provides mentoring and support to local participants, conducts research, and provides youth consultants to policy boards and other organizations. 

Kids As Self Advocates (KASA) is a national, grassroots network of youth with disabilities and needs (and our friends), speaking out. KASA members are leaders in our communities, help spread helpful, positive information among their peers to increase knowledge around various issues. Those issues include: living with disabilities, health care transition issues, school, work, and many more, They also help health care professionals, policymakers and other adults in their communities understand what it is like to live with disabilities. Members participate in peer discussions about how to help each other succeed. 

Disability Mentoring Day is an opportunity for youth with disabilities to visit worksites and develop relationships with volunteer mentors. Participating youth make connections between school and work, develop or refine personal goals, identify career skills, and explore possible career paths. 

The Youth Leadership Forum (YLF) for Students with Disabilities is a unique career leadership training program for high school juniors and seniors with disabilities. YLF delegates attend a four-day even in their state capital to cultivate leadership, citizenship, and social skills. 

Mitsubishi Electric America Foundation - American Association of People with Disabilities (AAPD) Congressional Internship Program provides an opportunity for students with disabilities to work on Capital Hill for eight (8) weeks and acquire valuable work experiences that will enrich their academic studies. As congressional interns, participants gain insight into congressional office operations, public policy development, and constituents’ roles in the legislative and political processes. 

Are there courses that teach me to be a self-advocate?

Being a self-advocate is a valuable personal attribute. As you practice your self advocacy skills you will soon make them a part of who you are and how you behave. Some schools offere courses and opportunities to practice self-advocating skills. Students in the Holt Public Schools in Michigan can attend a College Success Class (Lamb, 2002) to study different learning styles and what self-advocacy means. They write a self-advocacy plan for furthering their education by using an outline. This plan includes their learning styles, strengths, limits, and needed accommodations. The plan also states what the student needs to do to put the plan into action. Students share their plans with peers and teachers. If you are new to self-advocacy, ask a teacher or a friend to help you write a plan. This will help you learn the steps to get what you want.

Taking active participate in your Individualized Education Plan (IEP) can be a part of a self-advocacy plan AND you can ask for your IEP team to include a goal to provide assistance for you to develop a self-advocacy plan.

Are there any college programs that teach self-advocacy skills and where I can see what college is like?

Some colleges have summer programs for students with disabilities. These programs often teach self-advocacy and study skills. They also discuss the problems of being on your own more. Some programs have classes for credit. Contact HEATH for the most recent list of summer programs. Many schools have orientation programs for all freshmen. You should check to see if the school you plan to attend has a program. There may be an orientation session for students with disabilities.

ONLINE MATERIALS/RESOURCES:

There is helpful information on these websites:

The HEATH Resource Center at the National Youth Transitions Center

Advocacy Consortium for College Students with Disabilities (Look for student information on left of page.)

National Center for Learning Disabilities

There are several lesson plans on a range of self-advocacy skills at the University of North Carolina at Charlotte, Self-Determination Synthesis Project.

Advocating Change Together has developed a step-by-step training program. You can find more information here

Self-Advocates Becoming Empowered (SABE) is a national organization. Its goal is to make self-advocacy available to everyone. Their web site  can link you to a local self-advocacy group. It also has helpful information.

ASSESSMENT/EVALUATION:

Now that you read this module, use the following steps to develop a plan of action for meeting this need:

  1. Understand the need for self-advocacy and the skills you need to become a self advocate, especially in a college setting.
  2. Be able to describe the difference between high school and college in terms of how services are provided to you.
  3. Plan some life goals. Ask your family and friends to help you develop these goals. They can always change, but it’s good to have goals. They give your life direction.
  4. Lean more about leadership programs and consider participating in one.
  5. Ask your teacher or IEP team for help in developing a self advocacy plan
  6. Consider attending a summer orientation program at a nearby college (or the college you plan to enroll).
  7. Learn more about how to become a better advocate by exploring the websites included in this module and/or reading books on this topic, which can be found on websites such as Amazon.

WRAP UP:

Now that you read this information on self advocacy, you should understand the difference between high school and college. You should know the skills you need to be a good self advocate and to take more control of your life. There are many opportunities to develop leadership skills. You can use these skills and opportunities as an adult to achieve success in your career, your community, and your life.

For teachers interested in creating a lesson plan on self-advocacy, Rachel Bennett created a lesson on Self-Awareness/Self-Advocacy for middle school students. 

ATTACHMENT:

www.www.heath.gwu.edu/assets/71/my_style_lesson_plan_middle_school_1.pdf

Dr. Michael Ward coordinates the Transition Special Education Distance Education Certificate and Master's Programs at George Washington University. Prior to this, he was a Research Associate with the HEATH Resource Center on Postsecondary Education for Individuals with Disabilities, the Executive Director of the Arizona Council on Developmental Disabilities and the Director of the National Center for Self-Determination and 21st Century Leadership at the Oregon Health and Sciences University. He administered the Secondary Education and Transitional Services Branch in the U.S. Office of Special Education Programs. Dr. Ward also worked as a vocational rehabilitation counselor for New York State Developmental Disabilities Services and an education specialist for the Council for Exceptional Children. He received a Ph.D. in special education from the University of Maryland.

REFERENCES:

Ferber, T. and Pittman, K., & Marshall, T. (2002). State youth policy: Helping all youth to grow up fully prepared and fully engaged. Takoma Park, MD: The Forum for Youth Investment. Available at http://www.forumfyi.org/node/106

Lamb, M. (2002). Preliminary findings on a college success class for students with disabilities. Honolulu: National Center for the Study of Postsecondary Educational Supports (NCSPES), University of Hawaii at Manoa

Martin, J., Huber-Marshall, L., & Maxson, L. (1993). Transition policy: Infusing self-determination and self-advocacy into transition programs. Career Development for Exceptional Individuals. 16(1), 53-61.

Stodden, R. A. (2000). The study of postsecondary educational supports: A formative approach to an emerging area of study. National Review Forum Briefing Materials, March 9-10, 2000. University of Hawaii at Manoa: Center for the Study of Postsecondary Education Support, Rehabilitation Research Training Center.

Wehmeyer, M. L., Agran, M., & Hughes, C. (1998). Teaching Self-Determination to Students with Disabilities: Basic Skills for Successful Transition. Baltimore: Paul H. Brookes Publishing Co.


This document made possible in part by the support of The HSC Foundation, a Washington, D.C.-based foundation dedicated to expanding access and success in education beyond high school. HEATH is affiliated with The George Washington University Graduate School of Education and Human Development.The opinions expressed do not necessarily reflect the views or policies of The HSC Foundation. No official endorsement by the Foundation or of any product, commodity, service or enterprise mentioned in this publication is intended or should be inferred. Permission to use, copy, and distribute this document for non-commercial use and without fee, is hereby granted if appropriate credit to the HEATH Resource Center at the National Youth Transitions Center is included in all copies.