Self-Advocacy

OPWDD understands how important it is to share information and connect with others. We know it can be hard to know where to find help and advice.

We want to help you connect with groups across New York State. These groups include self-advocates, parents, and families who have gone through similar experiences and are ready to share what they've learned.

Many of these groups are run by self-advocates and parents of children with disabilities. They are often supported by professionals who can offer help or direct you to other groups that can answer your questions. 

You can also find resources on this page to help people with developmental disabilities advocate for themselves and to support their friends and families in advocating for them.

OPWDD and the Self-Advocacy Association of New York (SANYS) worked together to create a Right, Responsibilities & Advocacy Booklet to help people know their rights. 

Read the OPWDD/SANYS Rights Booklet

The Office of Advocacy’s goal is to support people with developmental disabilities and your families by sharing information, answering your questions, and connecting you to the right resources.

Our work focuses on:

• Listening to your concerns and ideas
• Providing guidance to help solve problems
• Promoting positive experiences for you through our services.

The Office of Advocacy is committed to strengthening our communication with you and your understanding of what OPWDD can provide to help you live the life you want to live. Our goal is not only to respond to your concerns and questions, but to help you build confidence, improve your self-advocacy skills, and have a stronger voice within the service system.

The Office of Advocacy also works closely with the Intellectual Developmental Disabilities Ombuds Program, or “Ombuds Program,” to address issues and make sure your voice is heard on things that are important to you.

Advocacy and Peer Support Unit

The Advocacy and Peer Support Unit is part of OPWDD’s Office of Advocacy and offers support for you and your family from people who have a developmental disability themselves and who will listen to your concerns and help you get the answers you need. When you connect with someone who truly understands your journey, it builds trust, reduces isolation, and strengthens confidence in advocating for yourself. Peer Specialists and advocates work with people to:

• Share information and guidance
• Support self-advocacy and confidence-building
• Help you understand services and supports
• Encourage your meaningful participation in decision-making about your life.

Through both one-on-one support and broader outreach, the Advocacy and Peer Support Unit help share your experiences and insights that can help OPWDD make improvements to services and policies over time.

How to Reach an Advocate

If you would like to connect with an advocate or Peer Specialist for support, you can reach out to the Office of Advocacy by email.

To get started, please email our advocacy inbox: [email protected] .

You can include general information about your question or situation, such as:

• Your name and how you want to be contacted
• The name of the person you are reaching out for (if not yourself)
• A brief description of what you are looking for support with

This helps us understand how we can best support you and connect you with the right advocate.

The independent Intellectual Developmental Disabilities Ombuds Program, or “Ombuds program” for short, provides you and your family with information, assistance, and support related to OPWDD services and systems. This program is separate from OPWDD and is operated by the Community Service Society of New York. An Ombudsperson is someone who is available to you to advocate on your behalf as you navigate OPWDD’s programs and services.

While the Ombuds program operates separately from OPWDD, the Office of Advocacy works with the Ombuds program to help you understand their role and how they can help you.

The Ombuds program is available to you and your family to:

• Explain the Front Door process, which is the first step in getting OPWDD services.
• Help you get the right documents ready for the OPWDD eligibility and service authorization process.
• Educate you and your family on Self-Direction, an option that lets you decide how you get your services.   
• Explain what a Care Coordination Organization is and how to talk to your Care Manager who will help you get services
• Explain the purpose of The Life Plan and advise you on how to address issues with your Life Plan.
• Provide resources and referrals for housing
• Understand how to report abuse/neglect to the New York State Justice Center
• Counsel you on complaints, actions that may be unfair, and how to be heard about those actions at a hearing

How to reach the Ombuds program

The Ombuds program statewide helpline is available Monday-Friday, 9 am-5 pm. To get help, call the free and confidential helpline at 800-762-9290 or visit www.iddony.org 

1.  Self-Advocacy Association of New York State (SANYS): SANYS is a statewide network of self-advocates with intellectual/developmental disabilities.  SANYS has regional self-advocacy groups throughout New York State that provide opportunities for people to meet and discuss ideas and concerns with people who have had similar experiences.  The regional self-advocacy groups assist people with developmental disabilities to become full and valued members of their communities, and help to educate people on their rights and opportunities.    
2. Self Advocates Becoming Empowered (SABE): SABE is a national organization that represents and provides services to people with developmental disabilities.  SABE’s mission is to ensure that people with disabilities are treated as equals and that they are given the same decisions, choices, rights, responsibilities, and chances to speak up to empower themselves; opportunities to make new friends, and to learn from their mistakes.
3. Independent Living Centers: The New York Association on Independent Living (NYAIL)'s mission is improving the quality of life, safeguarding the rights, and ensuring equal opportunities for all people with disabilities, as well as promoting the independent living philosophy both within the disability community and to the public.
4. Tourette Syndrome Association of Greater New York State (TSA): The Tourette Syndrome Association of Greater New York State is an affiliate chapter of the national Tourette Syndrome Association, Inc., a national voluntary health organization dedicated to identifying the cause, finding the cure and controlling the effects of Tourette Syndrome.
5. The Autism Society of America: The Autism Society of America provides advocacy, education, information and referral, support, and community at national, state and local levels through a nationwide network of affiliates.
6. The Sibling Leadership Network: The mission of the Sibling Leadership Network is to provide siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.
7. NYS Justice Center for the Protection of People with Special Needs: The Justice Center’s Individual and Family Support Unit provides resources and support for people receiving services and their families.

Accessing Life is a podcast focused on empowering people with developmental disabilities to live their best life.

Listen to Episodes on YouTube

In this video, self-advocates speak up and tell us what advocacy means to them and what they hope the future of advocacy will hold. This video was developed with the Self Advocacy Association of New York State.

In this educational set of videos, you will hear directly from people with developmental disabilities about the importance of open dialogue, information and community connection in helping people have meaningful relationships and supporting their sexual self-advocacy. These videos were developed with the training company Elevatus, the Self Advocacy Association of New York State (SANYS), and the filmmaker, the University of Minnesota. The videos will soon be accompanied by an online toolkit that will further assist self-advocates, professionals, and family members in supporting people with developmental disabilities around sexuality and relationships.