National Down Syndrome Society

Adults with Down syndrome use NDSS toolkits and advocacy resources to lobby lawmakers and raise awareness when mainstream services exclude them from essential supports.

ENABLE Model location

• Navigator-side Compensations → Assert One's Rights
• Navigator-side Compensations → Stage a Protest
• Builder-side Interventions → Set Requirements that Include Accessibility

What it is

National Down Syndrome Society (NDSS) is a navigator-side disability rights advocate and a builder-side policy shaper.

NDSS equips self-advocates and families with legislative toolkits, policy briefings, and advocacy training. People with Down syndrome and their allies use these resources to organize lobbying efforts, meet with lawmakers, and assert their rights when public and private services fail to provide equitable access. NDSS provides toolkits for Medicaid, organ transplant discrimination, subminimum wage, IDEA, ABLE accounts, and more. Its advocacy also influenced Medicaid policy and brought national attention to police violence affecting people with Down syndrome. These actions fit both navigator-side asserting one's rights and protesting categories, as people compensate for upstream neglect by demanding systemic change. ^{1 2 3}

NDSS acts as a builder-side requirement-setting force directly shaping policy and legislation through its collaboration with lawmakers and inclusive consumer products through industry collaborations.^{4 5 6 7} NDSS played a builder-side role in the passage of the ABLE Act, working with lawmakers to create tax-exempt savings accounts for people with disabilities. Its work included direct collaboration with Congressional sponsors, policy briefings, and lobbying efforts that shaped the bill’s language and secured bipartisan support.^{3 8 6 9 10}

Why it matters

When builders (service providers, policymakers) fail to set inclusive requirements or deliver accessible services, people with Down syndrome are forced to carry the burden of advocacy. When disabled people assert rights and protest to secure access that should have been embedded upstream, NDSS toolkits and briefings help alleviate their labor burden. By operating navigator-side, this NDSS manifestation highlights gaps in requirement-setting and design while addressing disabling forces like abandonment and precarity.^{1 4 5 2 6}

At the same time, NDSS’s builder-side interventions (such as shaping the ABLE Act and influencing Medicaid policy) demonstrate how advocacy organizations can drive systemic change and improve upstream requirements.

Part of the labor of advocacy can be demanded by the requirement to skillfully navigate internal and external challenges. NDSS’s leadership and advocacy strategies have sometimes led to internal debate and public critique, as reported by the Kansas City Star. While the organization is credited with major legislative achievements like the ABLE Act and raising awareness about police violence affecting people with Down syndrome, its leadership and engagement strategies have also led to tensions over partisanship and dissent.⁶

Real-world examples

In the news

Push Is On For States To Ban Organ Transplant Discrimination (March 2021)

• NDSS and other disability advocates lobby for state laws to prevent discrimination against people with Down syndrome in organ transplants, using toolkits and protest actions to mobilize families and allies.

New York Woman Is Nation’s First Lobbyist With Down Syndrome (June 2018)

• Kayla McKeon, hired by NDSS, became the first registered lobbyist with Down syndrome. The article covers her advocacy work on Capitol Hill, NDSS’s legislative priorities, and protest actions for disability rights.

Mattel partnered with the National Down Syndrome Society for the addition to the Barbie Fashionista line (April 2023)

• NDSS partnered with Mattel to create the first Barbie doll with Down syndrome. The article discusses NDSS’s advocacy for representation, the use of educational toolkits, and the partnership’s impact on public awareness.

Hospital No-Visitor Policies Endanger People With Disabilities, Advocates Say (May 2020)

• NDSS and other groups protested hospital no-visitor policies during COVID-19, lobbying for legislative changes and using advocacy toolkits to mobilize families and allies.

What care sounds like (builder-side interventions)

Care at the requirement-setting and design stages involves:

• "We are updating eligibility criteria so adults with Down syndrome can access all services."
• "We must consult self-advocates to ensure our programs meet real accessibility needs."
• "Our policy review includes input from NDSS and other disability organizations."
• "We use NDSS toolkits to guide our legislative process and ensure equity."

What neglect sounds like (builder-side interventions)

Neglect involves:

• "Adults with Down syndrome aren't our target population."
• "We'll address accessibility if someone files a complaint."
• "It's not required by current regulations."
• "We assumed families would find alternative solutions."
• "We don't use advocacy resources like NDSS toolkits."

What compensation sounds like (navigator-side compensations)

Compensation describes the labor disabled people undertake when upstream care is absent:

• "I had to meet with lawmakers myself because the system excluded me from services."
• "We organized a protest to demand access after repeated neglect."
• "I use NDSS toolkits to file complaints and push for change."
• "Our family joined NDSS advocacy campaigns to protect Medicaid and civil rights."

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All observations occur within the context of disability advocacy in the United States, especially legislative lobbying and protest actions in Washington, D.C.

Footnotes

1. https://www.disabilityscoop.com/2021/03/09/push-is-on-for-states-to-ban-organ-transplant-discrimination/29232/ "Push Is On For States To Ban Organ Transplant Discrimination - Disability Scoop" ↩ ↩²

2. https://www.disabilityscoop.com/2020/05/08/hospital-no-visitor-policies-endanger-disabilities-advocates/28300/ "Hospital No-Visitor Policies Endanger People With Disabilities, Advocates Say - Disability Scoop" ↩ ↩²

3. https://ndss.org/resources/able "ABLE Account Education and Advocacy Toolkit – NDSS" ↩ ↩²

4. https://www.disabilityscoop.com/2018/06/26/new-first-lobbyist-down-syndrome/25237/ "New York Woman Is Nation’s First Lobbyist With Down Syndrome - Disability Scoop" ↩ ↩²

5. https://abcnews.com/GMA/Living/barbie-unveils-doll-syndrome/story?id=98815030 "Mattel partnered with the National Down Syndrome Society for the addition to the Barbie Fashionista line - ABC News" ↩ ↩²

6. https://www.kansascity.com/news/politics-government/article234419687.html#storylink=cpy "’Hard to see her as an ally.’ Some in disability community wary of Weir’s campaign - Kansas City Star" ↩ ↩² ↩³ ↩⁴

7. https://www.congress.gov/bill/113th-congress/house-bill/647/history "H.R.647 - ABLE Act of 2014 - Congress.gov" ↩

8. https://www.prnewswire.com/news-releases/coalition-of-employer-financial-and-disability-groups-endorses-new-legislation-to-promote-able-accounts-in-the-workplace-301340417.html "NDSS-led coalition press release on ABLE Employment Flexibility Act – PR Newswire" ↩

9. https://ndss.org/able-employment-flexibility-act-letter "ABLE Employment Flexibility Act Letter of Support – NDSS" ↩

10. https://ndss.org/news/ndss-supports-enable-act-ensure-key-provisions-able-accounts-do-not-expire "NDSS Supports the ENABLE Act to Ensure Key Provisions of ABLE Accounts Do Not Expire – NDSS" ↩