Self-Advocacy
Value yourself and your rights
- Understand that your rights, thoughts, feelings, needs, and desires are just as important as everyone else's. But remember they are not more important than anyone else's, either.
- When in a discussion, don’t forget to listen and ask questions! It’s important to understand the other person’s point of view. Sometimes finding a compromise may be the best outcome as long as it doesn’t impact your safety, health, and overall well-being.
- Believe that you deserve to be treated with respect and dignity at all times, and so does everyone else.
- Don’t be afraid to speak up and describe the problems you’re facing. Beating around the bush just makes the issue unclear.
- Don’t be afraid to disagree with others, even if it means upsetting the peace.
- Hold everyone, including yourself, accountable for following through on decisions and actions.
- Don't wait for someone to recognize what you need or expect others to advocate for you.
- Create ideas about how you can get your needs met without sacrificing others' needs in the process.
- Don’t give up because of red tape, the status quo, or defeat.
- Don’t accept “NO” from someone who doesn’t have the authority to say “YES.”
- Allow yourself to be upset or angry, but always be respectful.
- Do say what's on your mind, but do it in a way that doesn’t hurt someone else or place blame.
- Control your emotions as much as possible by rehearsing your ideas before formally speaking.
- Stand up for yourself and confront people who challenge you and/or your rights.
- Remember that assertive communication is NOT aggressive communication.
- Accept compliments graciously.
- Allow for mistakes and ask for help, these are learning opportunities.
- Accept feedback positively. Be prepared to say you don't agree, but do not get defensive or angry.
- Sometimes you will have to agree to disagree on certain topics.
- Prepare for meetings.
- Be informed about as much as possible on the topic you’ll be discussing. Do research, and listen, so you can gain other perspectives on the issue.
- Keep records and document all meetings, conversations and correspondence.
- Collaborate: having partners goes a long way.
- Analyze problems and provide suggested solutions.
- Keep an open mind. Brainstorm creative solutions to problems and challenges.
Resources
Information & Support
For Parents and Patients
Self-advocacy Online
A series of videos and information about learning self-advocacy skills.
Kids as Self-Advocates (KASA)
KASA is a national, grassroots network of youth with special needs and friends, speaking on behalf of ourselves. We are leaders
in our communities, and we help spread helpful, positive information among our peers to increase knowledge around various
issues. Those issues include: living with special health care needs, health care transition issues, education, employment,
and many more. We also help health care professionals, policymakers and other adults in our communities understand what it's
like to live with special health care needs and we participate in discussions about how to help each other succeed.
Advocating Change Together (ACT)
A grassroots disability rights organization run by and for people with developmental and other disabilities. ACT's mission
is to help people across disabilities to see themselves as part of a larger disability rights movement and make connections
to other civil and human rights struggles.
Center for Self-Determination
Highly interactive working collaborative of individuals and organizations committed to the principles of self-determination.
The purpose of the collaborative is to change the nature of the support and service system for individuals with disabilities,
using the principles of self-determination to help all persons create the lives they want, connected to and with their communities.
Self-Advocates Becoming Empowered (SABE)
SABE is a self-advocacy organization working hard for the full inclusion of people with developmental disabilities in their
communities throughout the 50 states.
Center for Parent Information and Resources (DOE)
Parent centers in every state provide training to parents of children with disabilities and provide information about special
education, transition to adulthood, health care, support groups, local conferences and other federal, state, and local services.
This link has a search tool to help you find the parent center in your state; Department of Education, Office of Special Education.
National Council on Independent Living (NCIL)
Provides information and advocacy for independent living with links to locate state councils and local centers.
State Government Links
Hosted by the federal government, this website provides links to official websites in the U.S. states and territories.
The Arc of the United States
Provides fact sheets, webinars, and a lot of other information on public policy for families. The Arc works to protect people
with intellectual and developmental disabilities and their families on the federal level through public policy efforts. Many
local chapters are available.
TASH
TASH is a national organization advocating for disability rights, combining research with advocacy.
National Disability Rights Network
Provides legally based advocacy services to people with disabilities in the United States and is a good national resource
for looking into the legal rights of people with disabilities.
Youth Leadership Toolkit
Guide book and DVD videos for youth/young adults, parents, medical providers, and other professionals with tips from young
adults to assist in transitioning to adulthood. Includes transportation, finding adult health care, healthy relationships,
employment/volunteering, self-advocacy and independent living.
Developed by Independent Living Research Utilization (ILRU) in collaboration with the Center for Persons with Disabilities
and the Becoming Leaders for Tomorrow Project.