Beyond the Conversation: Putting “Nothing About Us Without Us” into Action

By Alison Barkoff: Complete Post through this link…

Beyond the Conversation: Putting “Nothing About Us Without Us” into Action
By Alison Barkoff, Acting Administrator and Assistant Secretary for Aging

Every March, the Administration for Community Living (ACL) and our networks proudly recognize Developmental Disabilities Awareness Month (DDAM). In collaboration with the National Association of Councils on Developmental Disabilities (NACDD), we celebrate the full inclusion of people with intellectual and developmental disabilities (I/DD) in our communities.

We have come a long way over the last several decades. Today, more people with I/DD than ever before live and participate in their communities. However, there are still many barriers that keep people with I/DD from being fully included in all aspects of community life. This has had harmful results. In comparison to their non-disabled peers, people with I/DD are more likely to live in poverty and experience homelessness. They have lower rates of employment and education and poorer health outcomes. People with I/DD who are from historically marginalized or underserved communities or who also have other disabilities (such as mental health needs) face additional barriers.

It is fitting that the theme of DDAM 2023 is “Beyond the Conversation.” It is not enough to simply talk about ways to improve the lives of people with I/DD. We must also take action so that all people with I/DD are making their own decisions, living the lives they want, and fully participating in their communities.

People with I/DD are more likely to have opportunities to work, learn, and participate fully in their communities when the public and policy makers understand their abilities, skills, and needs. And who better to share that information than people with I/DD themselves? Yet too often, people with I/DD have not had opportunities to advocate for what is important to them or been at the tables where decisions that impact them are made. As a result, they often have not had a meaningful role in shaping the systems that are meant to serve them. We must take action to make the phrase “nothing about us without us” more than just words for people with I/DD, and ACL is working hard to do that.

In many cases, the barriers faced by people with I/DD are the result of stereotypes and biases that have created low expectations and misunderstandings about what they can do and achieve. For example, people with I/DD are often presumed to be unable to make choices for themselves, and their rights to self-determination and autonomy are taken away.

One way ACL and the DD networks are working to change this is by creating more opportunities for people with I/DD to gain the skills to advocate for themselves and make their voices heard through advocacy at the local, state, and federal levels.

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