Self-Advocacy 101: Empowering People with IDD to Speak Up

Everyone should have a voice — especially when it comes to their own life, goals, and needs. For many people with intellectual and developmental disabilities (IDD), learning to speak up for themselves — called self-advocacy — can be life-changing.

What Is Self-Advocacy?
Self-advocacy means speaking up for yourself. It means knowing what you need, what helps you, and sharing that with others. It also means saying what you don’t want or need. Self-advocacy isn’t just about big events — it can be as simple as saying, “This isn’t working for me” or “I need support here.” People who do this are called self-advocates.

People with IDD have the right to self-advocate and to get support when they need it. Self-advocates take part in decisions about their daily lives and in public decisions that affect their rights and opportunities.

Why Self-Advocacy Matters
Self-advocacy builds confidence, independence, and control. When you speak up, you help others understand what matters most to you — whether it’s school, work, services, or everyday choices. Self-advocacy also helps break down barriers and change systems for all people with IDD, not just individuals.

Tools, Trainings, and Organizations in Illinois

There are many groups in Illinois that support self-advocacy and disability rights. Some focus on statewide self-advocacy networks, others offer training, mentoring, legal support, and ways to get involved.

Illinois-Based Supports

• Illinois Self Advocacy Alliance – A statewide network that helps people with disabilities learn to speak up, set goals, and take action. They offer training and mentoring to build strong self-advocates.
• Equip for Equality – Helps people with disabilities learn about their rights, advocate for themselves, and, when needed, offers legal support and training.
• The Arc of Illinois – Offers advocacy, information, and training so people with disabilities and their families can make informed choices and pursue their goals.
• Illinois Guardianship and Advocacy Commission (GAC) – Provides training and support around education rights and how to be an effective advocate in schools and beyond.
• Advocacy Unlocked LLC – Offers workshops and tools for families and people with disabilities to communicate clearly, document needs, and advocate for appropriate services.

National & Local Allies

• Self Advocates Becoming Empowered (SABE) – A national self-advocacy organization led by people with developmental disabilities.
• Access Living – Works to remove barriers and empower people with disabilities to take charge of their lives.
• ADAPT – A grassroots disability rights group focused on civil rights and full community inclusion.
• Family Support Research and Training Center | University of Illinois Chicago – Provides research, training, and resources that strengthen family support systems and promote inclusion, independence, and self-determination for people with disabilities.

These groups offer a mix of community, skills training, workshops, networking, and opportunities to join advocacy efforts.

These are just some of the advocacy organizations available. You can explore even more supports, training, and advocacy resources at IDDNavigator.org.

Know Your Rights

People with IDD have rights under federal and state laws — like the Americans with Disabilities Act (ADA), Fair Housing Act, and special education law. These laws are designed to stop discrimination and ensure equal access to education, work, housing, and public life.

In Illinois, the Office of the Attorney General’s Disability Rights Bureau enforces disability rights laws and protects equal access across the state. You can contact their bureau for information or to file a disability rights complaint.

Organizations like Equip for Equality can help you understand your legal rights and how to stand up for them.

Communication Strategies for Self-Advocates

Here are simple ways to speak up strongly and clearly:

1. Know What You Want to Say
   Before a meeting, write down your needs, goals, and what supports help you.
2. Use “I” Statements
   Say things like:
            “I need…”
            “I want…”
            “I feel…”
   This makes your voice clear and personal.
3. Practice Active Listening
   Listen carefully to others, then repeat what you heard to make sure you understood.
4. Bring a Support Person If Needed
   A trusted friend, family member, or advocate can help you communicate and feel confident.
5. Follow Up in Writing
   After meetings or emails, summarize decisions in writing so everyone is clear.

Get started today

Self-advocacy is a skill you build over time. Try one step this week: speak up in a meeting, join a training, or reach out to one of the groups listed above.

You have a voice — and it matters.