UCEDD What?

This week, I attended the Association of University Centers on Disabilities (AUCD) annual conference where a surprising moment happened. 

The National Center for Prenatal & Postnatal Down Syndrome Resources, where I serve as a bioethicist, is part of the University of Kentucky’s University Center for Excellence in Developmental Disabilities (UCEDD). UCEDDs, LENDs (Leadership Education in Neurodevelopmental and related Disabilities), and Intellectual and Developmental Disabilities Research Centers (IDDRCs) are the constituent organizations of AUCD.

There are 67 UCEDDS (at least one in every state), 43 LENDs, and 15 IDDRCs spread across the nation. More than likely, one is at nearby university in your state. You can find out about these programs and where they are located at AUCD’s website. 

The conference draws hundreds of directors, staff members, research assistants, and trainees to Washington DC. The Tuesday morning plenary featured an impressive panel of leaders from the Obama Administration:

• Melody Musgrove, Director, Office of Special Education Programs, Department of Education
• Portia Wu, Assistant Secretary of Labor for the Employment and Training Administration, Department of Labor
• Kathy Greenlee, Assistant Secretary for Aging and Administrator of the Administration for Community Living

Judy Woodruff, Co-Anchor and Managing Editor for the PBS NewsHour, moderated the panel.

Sec. Greenlee, Wu, Dir. Musgrove, Woodruff (L-R)

As a father whose daughter Juliet has Down syndrome, it was inspiring to hear what the panelists had to say:

• Secretary Wu talked of how working for the Department of Labor, and seeing individuals with visible disabilities working along side her every day made her realize how even when she worked at places that hired those with disabilities, there was still a ways to go for including those with disabilities in the workforce.
• Secretary Greenlee talked of the need to develop programs and support services so that individuals with disabilities could live in the community and have a reason for getting out of bed each morning, “like each of us needs.” She also got a laugh sharing how she once called and challenged her mom about her upbringing: “why didn’t I have any friends with intellectual disability growing up?”

But it was Director Musgrove’s remarks that really connected with me.

Director Musgrove talked about the importance of not just “inclusion,” but an “inclusion culture.” She talked of how she tours schools and they will mean it as a good thing when they highlight “where they do inclusion well” in a certain classroom or activity. “Doing inclusion well,” Director Musgrove explained, really means its ingrained in the entire culture of the school, not in isolated classrooms or activities.

I sat there having hope because here were people in positions of making real policy change talking about working towards a society where Juliet and those like her have jobs, have a purpose, and are included.

And, then, I was surprised.

Woodruff was reading questions submitted by the audience and asked one about the need for both defining goals and steps to meet those goals for students with intellectual disabilities. She asked if the person who submitted the question wanted to elaborate, and behind me rose a young man with Down syndrome posing his question to the Director of the Office of Special Education Programs.

I thought “how cool is that?”

How many people would have even thought of a person with Down syndrome attending a conference for university programs in DC? Or, would’ve expected a person with Down syndrome, a person who had an IEP, ask a question before hundreds of attendees to the Director of Special Education?

And then I realized how if the remarks of the panelists actually were realized, if we did have an inclusion culture, then it wouldn’t be so surprising to have someone with Down syndrome at a conference asking a question.

As evidence of what an inclusive culture looks like, one needed only to consider the panel itself.

I doubt any of the attendees were surprised that the panelists of high-ranking agency officials moderated by a news anchor were all women. Something that would’ve been surprising just 50 years ago. But, our society has progressed in including women in the workforce, in the community, and in leadership. So much so that it’s not even noticed that this panel would be all women.

If these agency officials actually implement their goals, then perhaps in the not too distant future, it will be equally unremarkable to find individuals with Down syndrome attending professional conferences asking questions of high-ranking agency officials.

I certainly hope that happens, because I think Juliet would enjoy visiting Washington DC, and would have a good question to ask.