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August 09, 2022

What is Advocacy and Why is it Important?

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Different Types of Advocacy for the I/DD Community

 “Nothing about us, without us.” It’s a phrase disability advocates work hard to enforce. Both disabled and nondisabled people must work together to show the world that the negative perceptions surrounding the disabled community are wrong. Disability advocates show that disability is natural and that those with disabilities can do just as much as a non-disabled person. A quote by Emma Thompson says, “being disabled should not mean being disqualified from having access to every aspect of life,” and that captures the message that disability advocates are trying to get people to understand and work towards.

To be an advocate is to speak out, stand up, protect, and defend the rights of people who have an intellectual or developmental disability (I/DD). Both self-advocacy and advocacy on behalf of others are needed to present the strongest voice. Disability advocacy can include speaking, writing, promoting, and defending the rights of people with disabilities. Advocacy on behalf of others is critical when someone in the I/DD community cannot advocate for themselves or attend advocacy events.

Even If they can advocate for themselves, unfortunately, not everyone listens. Every voice matters and deserves to be understood.

“Because people have false perception of the limitations and abilities of individuals with disabilities, they remain regularly undermined and discriminated against,” according to an article written by Kristi Mutz at Southeastern University. She goes on to say that a lack of understanding surrounding the I/DD population has created exaggerated fears and diminished expectations. Because of this, these individuals can lose or be denied basic human rights like equal opportunity, inclusion, access, and independence, which leaves them discriminated against.

Research by Ten Klooster in an article he wrote for the National Library of Medicine suggests that providing information alongside contact and dialogue with those with I/DD can change previously negative attitudes into positive outlooks. Together, we need to work to include those in the I/DD community, so they not only maintain existing rights, but also gain new rights and live fulfilling lives reaching their full potential.

It is essential to include those in the I/DD community in conversations and decisions about disability. Having a disability brings firsthand experience that those without an I/DD cannot fully understand. That is why self-advocacy is important. People with I/DD have the right to and are encouraged to act as self-advocates. Self-advocates exercise their rights as citizens by communicating for and respecting themselves and others. Through self-advocacy, people with I/DD will have more impact on their own situations and public policies that affect them. Self-advocacy does not mean you will be alone throughout the process, but you will learn how to use your voice and speak about your feelings. Self-advocacy is important because these individuals are the ones living through it and can provide the knowledge, experience, and skills required for change.

There are many ways you can advocate for the I/DD community, including individual advocacy, citizen advocacy, family advocacy, legal advocacy, and systematic advocacy. Whether you are an individual with an I/DD, have a family member or friend with an I/DD, or just want to be involved and help advocate, there are ways to participate.

Individual advocacy is a person or group that helps advocate for one person with a disability. The individual advocate helps prevent and address discrimination, abuse, or neglect. They may speak out for a vulnerable person or help connect them to resources. Individual advocates can be friends, family, volunteers, or, more formally, you may hire someone as an individual advocate.

Having a supportive family or family member can make a world of difference for an individual with I/DD. According to the American Association on Intellectual and Developmental Disabilities, most people with I/DD live in the family home, and families are the primary source of support for their family member with I/DD.

Family advocacy is when a family member of a person with a disability advocates for that person. As a family member, you typically know that person best and understand what they need better than anyone. Not only is it helpful to the person with the disability, but the family member advocating can learn more about the world of disability and grow in their experience and knowledge.

Another option to help you start advocating is group advocacy. Group advocacy consists of people, online or in person, who advocate for the same disability or a disability rights goal together. Examples can include Facebook groups, unions, and alliances.

 Group advocacy is citizen advocacy where members from the community voluntarily advocate for a specific person or a specific cause. This can include fundraising, raising awareness, volunteering, or simply showing your support. Both group and citizen advocacy are especially important for people with I/DD who may not have supportive family members or others to turn to for help.

Finally, there are the more legal and systematic sides of advocacy. These include the rights, policies, and laws surrounding people with disabilities. The goals can be to get a law changed, a policy written, long-term social change, and to have the legislation and practices align with the rights and interests of the people with I/DD.

Advocacy makes a difference, whether it is just one person or a team of people. It raises awareness, so the rest of the world understands the needs and challenges. Without advocacy, people with disabilities will not be represented as well as they should be.

Below you can find links to resources of various advocacy groups, alliances, and resource pages. These can teach you how to become more involved and where to go if you need help connecting with or finding assistance.

Links and Resources:

ADA National Network,Americans%20with%20Disabilities%20Act%20(ADA)

  • This link takes you to a website that lists and describes some laws in primary and secondary education

American Association of Intellectual and Developmental Disabilities

  • The AAID promotes progressive policies, research, effective practices, and human rights for those with I/DD.

 American Association of People with Disabilities

  • This link will take you to a page full of resources for many distinct categories such as Veterans, Technology, and Education.


  • This link provides you with advocacy and legal rights resources, including the ADA National Network, the American Association of People with Disabilities, the Job Accommodation Network, and more.

Center for Parent Information & Resources

  • A parent resource center that provides resources and connects parents that have children with I/DD

Department of Developmental Disabilities

  • This link takes you to the Ohio Department of Developmental Disabilities and has a lot of information, resources, providers, and how to find a provider

Disability Advocacy Alliance

  • The Disability Advocacy Alliance was formed by parents, guardians, and family members to protect the rights of individuals with I/DD in Ohio.

Disability Rights of Ohio

  • The Disability Rights of Ohio is a nonprofit that advocates for the human, civil, and legal rights of people with disabilities in Ohio. They also have a resource center on their website that can connect you to anything from housing to benefits counseling to transportation.

Independent Living Research Utilization

  • This link takes you to a map that has a directory of Centers for Independent Living and Associations in Ohio and all around the U.S by state, city, or county.

Ohio Laws & Administrative Rules

  • Rights of a person with developmental disabilities

Olmstead Rights

  • This website provides resources and information on self-advocacy, family/friend advocacy, and legal advocacy.


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