The voices of people with intellectual and developmental disabilities (IDD) are often ignored or not considered. They have their own ideas and aspirations for their lives. However, the voice of people with IDD is often usurped by people who may be well-meaning but believe they know better.

This is why advocacy, specifically self-advocacy, is essential. Being a self-advocate puts power in the hands of a person with a disability. It helps them see opportunities to take more control of their lives and become more independent.

By being a part of a self-advocacy group, people with I/DD can increase their subjective well-being and happiness. They also have the opportunity to be part of a supportive and empowering network.

Let’s dive in.

What is an Advocacy Group for People for IDD?

An advocacy group for people with IDD is an organization that specializes in protecting people’s fundamental rights. They empower individuals to advocate for themselves and others through knowledge and support. 

An advocacy group can take on many forms, like friends empowering each other. Usually, they are official networks or organizations with regularly scheduled meet-ups where people with disabilities can meet others, ask questions, and learn about available resources.

What are the Types of Advocacy?

The three main advocacy groups we will look at today are individual advocacy, systems advocacy, and self-advocacy.

Individual Advocacy

Individual advocacy, according to West Virginia University, comes in two forms: formal and informal. Individual advocates usually focus on one or two people with disabilities and ensure their needs are met. Informal advocates can take the form of friends or family, while formal advocates are usually paid and part of an organization to assist an individual. 

An example of formal individual advocacy may involve a direct support professional (DSP) or case manager talking with an employer at the workplace where injustice has occurred to a person with disabilities, such as bullying from fellow co-workers. The advocate would address the person’s concerns and open a dialog with the employer to rectify the issue quickly.

System Advocacy

Systems advocacy is adjusting the law put in place to protect the rights and freedom of people with IDD. Systems advocacy groups advocate politically on the state and national levels, pushing for equality rights to be later turned into new laws.

For example, the American Association of People with Disabilities (AAPD) and the National Council on Disability (NCD) are both organizations that have a political presence and push for the rights of people with IDD to be heard.

Self-Advocacy

Self-advocacy is the most essential and powerful form of advocacy, as it puts the power back into the hands of people with IDD. Understanding what is self-advocacy means understanding individual rights, and knowing it’s okay to stand up for them.

Support networks or dedicated self-advocacy groups give people with I/DD the skills and encouragement necessary to speak up for themselves.

For example, a person with I/DD who’s usually shy or doesn’t know how to voice their desires can learn, with encouragement and support, how to better advocate for themselves.  This can happen through a support network, or even remote supports services. They may start speaking up for themselves at case manager meetings with the right encouragement. 

What are Some Advocacy Groups in the USA?

Some of the most well-known advocacy groups in the USA include:

• The Arc of the United States
• The American Association on Intellectual and Developmental Disabilities
• American Association of People with Disabilities (AAPD)
• ANCOR
• The Disability Rights Education and Defense Fund

These advocacy groups aim to educate people about their rights and how to empower themselves and their loved ones. They also fight for the rights of people with disabilities.

Why Join an Advocacy Group?

Joining an advocacy group can lend itself to a network of empowered individuals with the interests of people with I/DD at their forefront. Joining a group also means a person with IDD can access any resources they have, like educational documents, classes, and lectures on the rights of people with IDD and how those rights are improving daily.

For example, joining an advocacy group like The Arc of the United States would bring numerous benefits. People with IDD would be surrounded by people who could share best practices and what laws are in place to protect the rights of people with disabilities. They would know all the benefits a person with a disability has available to them. They would use a person-centered approach to determine the best course of action for any individual’s best future.

What are the Benefits of Being an Advocate?

The benefits of being an advocate are numerous. Advocates change lives around them as well as improve their own lives.

The Journal of Applied Research in Intellectual Disabilities (JARID) conducted a study in which they noted how people with disabilities felt after joining self-advocacy groups . This study specifically looked at the subjective well-being that the participants were asked to describe. Subjective well-being refers to how an individual would describe their emotional state according to external factors, like this new organization.

In the study, researchers found that people with disabilities benefited from being a part of self-advocacy groups. There were reports of improved subjective well-being by simply participating in these groups.

Conclusion

Being an advocate is necessary in a world where people with IDD rights and needs may be ignored. By learning how to self-advocate and empower oneself and others, people can experience the many benefits such as improved self-esteem, enhanced communication skills, and a greater sense of inclusion within their communities. 

Additionally, as self-advocates, individuals with IDD can contribute to shaping policies and systems that promote equality and ensure their voices are heard, fostering a more inclusive and equitable society for all.