Toward a More Inclusive Definition of Diversity in the Disability Community

March 30, 2015

This post was published March 2015, please see below for an update from March 2016.

As Developmental Disabilities Awareness Month draws to a close, it is important that we take time to reflect on the values embodied within the Developmental Disabilities Assistance and Bill of Rights Act of 2000. The DD Act, as it is commonly known, ensures that people with developmental disabilities in the United States and their families have access to services and supports that promote self-determination, independence, and inclusion in their communities.

The nearly 5 million Americans with developmental disabilities represent a vast diversity of backgrounds, experiences and cultures. This is why the DD Act specifically calls for the services and supports it provides to be delivered “… in a manner that is responsive to the beliefs, interpersonal styles, attitudes, language, and behaviors of individuals who are receiving the services …”

To make the DD Act’s vision a reality, AIDD is actively taking steps to increase the cultural competency of our leaders, staff, and decision makers across the developmental disability network.

Why do cultural competency and diversity matter?

The 2010 census figures vividly illustrate that racial and ethnic minority communities are growing at a much faster pace than the current majority population, white Americans. Trends in immigration and birth rates indicate that by 2050 there will be no majority racial or ethnic group in the nation. We are already seeing this in our schools; this spring, for the first time in U.S. history, more students of color will be graduating from high school than white Americans. And as ethnic diversity in the United States has increased, so too has the number of individuals with disabilities from diverse ethnic backgrounds.

People with developmental disabilities reflect the diversity of the country in many other ways as well; including in regards to gender, socio-economic status and education, just to name a few. Unfortunately, people with developmental disabilities from minority communities can face unique barriers to achieving self-determination, independence and inclusion.

For example, we know that African American and Latino boys with disabilities face school suspension and expulsion at higher rates than their peers. We also know from a project conducted by the University of Minnesota that Somali children in Minneapolis have higher rate of autism spectrum disorder than their peers, however the stigma associated with autism in the Somali community may cause families to miss out on critical early intervention opportunities.

And we know that lesbian, gay, bisexual, and transgender young people who are living with intellectual disabilities have unique sexual health needs. Well-meaning attempts to protect gender and sexual minority youth by limiting their autonomy can inadvertently put this population at risk for a range of negative health consequences.

These sorts of complex issues can only be addressed by building a diverse workforce and weaving inclusion and cultural competency best practices into the fabric of all services provided under and outside of the DD Act.

What is AIDD is doing to increase diversity?

The first step is working to better understand the needs of the communities that we serve to ensure that our programs provide culturally competent services. For the past two years, AIDD has been working to better understand the needs of diverse populations through data collection and research.

We are funding work by the Association of University Centers on Disability (AUCD) to develop a blueprint for cultural and linguistic competence across the nation’s 67 University Centers for Excellence in Developmental Disabilities. We have also developed workgroups within the Protection and Advocacy Agencies and Developmental Disability Councils to accomplish the same goal. And, most importantly, we are reaching out to the non-profit communities that serve under-represented groups to learn from and partner with them.

Second, AIDD will work to increase the cultural competency of our workforce. In 2014, for example, we funded a Leadership Institute for Cultural Diversity and Cultural and Linguistic Competence at the Georgetown University Center for Cultural Competence. The Institute will help our leaders to better understand the issues surrounding disability in diverse communities, and recruit a more diverse workforce. The Administration for Community Living has also instituted an agency-wide diversity initiative to strengthen the cultural competency of all programs that impact people with disabilities, older adults, and their caregivers.

Third, we have been working to increase diversity within our workforce. We are working with other agencies within HHS and across the federal government to look for ways to mutually benefit from pipeline grants and other initiatives to increase cultural and ethnic diversity of people working in social services fields (including people with disabilities). In 2016 and 2017, AIDD hopes to fund grants designed to encourage under-represented groups to take on leadership and advocacy roles in the disability community.

Finally, and most importantly, we are working to build the broadest possible definition of diversity in the foundations of all we do at AIDD and across ACL. Only then can we ensure that all people, regardless of age, ability or cultural background, have the opportunity to participate fully in our society—not just during Developmental Disabilities Awareness Month, but every day of the year.

Update: March 1, 2016

Over the past year, people and organizations from across the DD Act network have stepped up to the plate with a renewed focus on diversity and cultural and linguistic competency.

Among the initiatives AIDD has been supporting:

  • The Georgetown University National Center for Cultural Competence will be hosting its second Leadership Institute this summer. The institute seeks to increase the ability of leaders within the disability network to respond appropriately to the growing diversity among people with disabilities. Once again this year we had far more qualified applicants than available slots and many of last year’s participants have shared how much the experience meant to them.
  • AUCD has published a Diversity and Inclusion Toolkit, which identifies key themes and objectives for increasing cultural and linguistic diversity along with specific strategies and resources to put them into action.
  • AIDD awarded National Training Initiative grants to 14 University Centers for Excellence in Developmental Disabilities (UCEDDs) to support a one-year diversity fellowship

I am frequently reminded that we are not alone in working towards greater diversity and inclusion. These important, and often difficult, conversations are taking place across the country — in homes, classrooms, boardrooms, and even on the Oscars stage.

I look forward to the progress that lies ahead as we continue to work together and bring the promise of the DD Act to everyone in our community.



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Last modified on 11/13/2017


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