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

March 31, 2023
Source: Administration for Community Living (ACL)

Written 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.

Continuing our long-standing work to build strong self-advocacy networks and leaders with disabilities across the country, ACL funds the Self Advocacy Resource and Technical Assistance Center, a national center to strengthen the self-advocacy movement and support self-advocacy organizations. We also recently funded the National Center for Disability, Equity, and Intersectionality, which includes a focus on building young leaders with disabilities that reflect the diversity of the community.

Partners in Policymaking (PIP) is another example of an ACL program that moves beyond the conversation to give people with I/DD the tools to take action. Started by the Minnesota Governor’s Council on Developmental Disabilities, PIP celebrated its 35th anniversary last year. The program trains people with I/DD and their family members to advocate for themselves and for changes in the systems that support them. Participants learn about their state’s systems for disability services, inclusive education, assistive technology, and federal civil rights laws. They also learn how to effectively educate policymakers about issues impacting people with I/DD and are empowered to take action in their communities. Thousands of PIP graduates are now armed with more knowledge about their rights and strategies for creating effective change. In addition to advocating for changes in their own lives, graduates have formed nonprofits, served on boards and DD councils, and helped lead major initiatives in their states. PIP also has shaped ACL’s current leaders: my brother Evan got his start in disability advocacy through PIP and then joined me in national disability advocacy, and ACL’s Commissioner on Disabilities, Jill Jacobs, is a proud PIP graduate, too.

ACL is building on the PIP model of education and advocacy and adding grassroots-coalition building through our work to implement the Home and Community Based Services (HCBS) Settings Rule. The Settings Rule ensures that people who receive Medicaid-funded HCBS (including HCBS waivers) have the same rights and ability to make their own choices as everyone else. It also ensures that they have access to their broader community. ACL and the DD networks, working with self-advocacy organizations, have hosted webinars and developed plain-language materials to educate people with I/DD and their families about their rights under the rule. ACL’s DD networks are advocating alongside people with I/DD to ensure the rule is fully implemented in every state and territory, including by helping people with I/DD give input through public comment and working groups. This ongoing stakeholder engagement is leading to better-informed policies and stronger monitoring and enforcement. In the upcoming year, ACL will be expanding this advocacy effort beyond the HCBS settings rule to broader HCBS policies in states.

When people with I/DD have the skills and tools to advocate for themselves, they can also give voice to their own wishes, make their own choices, and build lives free from the restrictions of guardianship. The Center on Youth Voice, Youth Choice (CYVYC) is one way ACL is taking action to tackle the issue of guardianship. CYVYC is training young people with I/DD and their families about the harmful impacts of guardianship – including the loss of the person’s ability to choose where they live, whether to get married, or their ability to vote – and about alternatives to guardianship, like supported decision-making. These young people then become “youth ambassadors” who educate other young people with I/DD and their families about alternatives to guardianship. CYVYC is also about advocating for systemic change. Because guardianship laws are different in each state, youth ambassadors are playing an important role in educating policymakers in their own states. Their advocacy has already led to a number of states changing their guardianship laws and practices.

These are just a handful of the many examples of how ACL and our networks are working to ensure that people with I/DD are at the table, their voices are heard, and that they are driving policy change.

I’ll close by recognizing that DDAM 2023 began with a huge loss to the disability community. Judy Heumann, often called the “mother of the disability rights movement,” passed away on March 4. Judy championed so many of the positive changes we see today – she was instrumental in nearly every hard-won victory for disability rights since the 1960s. Judy put it best when she said, “Independent living is not doing things by yourself. It is being in control of how things are done.” That’s what DDAM is all about. As we celebrate how far we have come, we also recognize what remains to be accomplished. As DDAM 2023 comes to a close, ACL affirms our commitment to working alongside people with I/DD, as well as with their families and the broader disability community, to ensure that every person with I/DD can live the life that they want, as a truly included and valued member of their community.

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