David Egan on Advocacy and the NDSS Advocacy Conference

After many years going on Capitol Hill advocating for the issues that matter in our lives, this year was again a special experience with the Down Syndrome Association of Northern Virginia (DSANV) team where we joined the National Down Syndrome Society (NDSS) advocacy Conference in Washington, D.C. The multi-day event culminated in face-to-face Capitol Hill meetings to advance critical federal legislative priorities for the Down syndrome community. Those meetings reinforce my passion for advocating with our legislative representatives.

These were the Core Legislative Priorities & Board Takeaways:

Supplemental Security Income (SSI) Benefits

The Issue: Current SSI asset limits heavily penalize individuals with Down syndrome who wish to work or save for their future.

Advocacy Focus: Pushed lawmakers for immediate legislative updates to raise asset limits, eliminate marriage penalties, and modernize the system to promote financial independence.

Individuals with Disabilities Education Act (IDEA) Funding

The Issue: IDEA has historically been underfunded, limiting the resources available for true inclusive education in public schools.

Advocacy Focus: Campaigned for fully funding IDEA to ensure local school districts receive the federal financial support necessary to provide robust accommodations and inclusive classrooms.

The Charlotte Woodward Organ Transplant Discrimination Prevention Act

The Issue: Individuals with Down syndrome and other intellectual disabilities face unlawful discrimination when being considered for life-saving organ transplants.

Advocacy Focus: Urged immediate co-sponsorship and passage of this federal bill to prohibit healthcare providers from denying transplant access based solely on a disability diagnosis.

National Institutes of Health (NIH) Research Funding

The Issue: Targeted research on Down syndrome—specifically regarding its links to Alzheimer’s disease, immune system traits, and cognition—requires sustained federal backing.

Advocacy Focus: Met with appropriators to secure robust, continuous funding for the NIH INCLUDE project (Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome).

While all of the above issues are critical, and I advocated for all of them, I would like to highlight the importance of inclusive competitive employment

In my past experience of almost thirty years of competitive employment, the issue of being fully included in the workforce is always a priority for me and I would like to share with you my thoughts on this issue that is dear to me:

Employment should make people feel like they belong. After my internship in 1998, I was hired as a clerk by Booz Allen Hamilton in the Distribution Center. I was a member of the team, and I was treated like everyone else in the office, in terms of wages, yearly assessments, professional development and inclusion in the firm activities. My personal experience should be the norm in 2026. In many ways, my career path reflects the drive and commitment of any professional. What sets my story apart is maybe what is not expected: I have Down syndrome.

There are many bright, capable people with disabilities sitting at home or doing jobs that don’t challenge them. Why is that? I think part of it has to do with confidence. Maybe the people with more self-confidence will try jobs that others might not. And businesses are looking for people who have confidence in what they can do. The other part is that companies need to be open to hiring people with disabilities for their jobs. All the confidence in the world won’t get you a job if companies won’t consider your application. So I am hopeful that my story will help change the minds of employers. My success stems from two key factors: a strong work ethic and a lifelong system of support. My family believed in me. My teachers prepared me. My mentors cared about me. And my employers hired me, gave me the training, tools and opportunities to succeed and pursue a career of advocacy.

The individuals with Down syndrome have been advocating for the Transformative Competitive Employment bill and for the SSI Savings Penalty Elimination Act. Together with the Down Syndrome Association Northern Virginia (DSANV) and the National Down Syndrome Society (NDSS), we have met with several Congressional Members to share our stories and to ask for their support. We need to be seen as individuals who can contribute. We do matter, we have abilities, we are reliable and citizens who vote.

“My experience should be the norm and not the exception in employment”

I am looking forward to more meetings with our legislative representatives as those encounters are critical for the well being of our community. Hearing our stories changes hearts and minds and hopefully translates into actions that improve the lives of individuals with Down syndrome and their families.