Framingham Residents Attend Down Syndrome Advocacy Conference

From April 17-19 2023, Framingham residents Cheryl Caira, Jordan Caira, and Laura Green attended the Down Syndrome Advocacy Conference in Washington D.C., hosted by the National Down Syndrome Society. Over 350 advocates in the Down syndrome community from across the country attended.

According to the NDSS website, the conference is designed to bring the community together to advocate for legislative priorities facing the Down syndrome community, The conference ends with an opportunity for attendees to advocate to Members of Congress on Capitol Hill.

Cheryl Caira is a parent to a daughter with Down syndrome and powerful advocate in the Framingham community. Jordan, her daughter, is a self-advocate.

Laura Green is also an advocate who works for the Massachusetts Down Syndrome Congress. She and Jordan Caira met at Framingham High School, where they graduated in 2015.

The legislative priorities at the conference this year included the Transformation to Competitive Integrated Employment Act, National Alzheimer’s Project Act (NAPA) Reauthorization, Increased Funding for the INCLUDE Project at the National Institutes of Health (NIH) , and the Charlotte Woodward Organ Transplant Discrimination Prevention Act.

The NDSS website states:

“Despite existing civil rights protections, thousands of Americans with disabilities are legally paid less than the minimum wage because of a provision in Section 14(c) of the Fair Labor Standards Act of 1938. This provision has led to the segregation of people with disabilities into sheltered workshops and has perpetuated the myth that people with disabilities are incapable of meaningful employment. NDSS supports legislation that phases out the use of 14(c) certificates and transitions people with disabilities into competitive, integrated employment.”

To Jordan and Cheryl, the Transformation to Integrated Employment Act hits close to home. Jordan has been employed at AMC Theaters in Framingham for almost 8 years, and loves her job. The disability community is the most untapped pool of talent when it comes to employment, despite the numerous positive outcomes of businesses hiring a disabled person. To Jordan, her job at AMC is her livelihood and an important part of her identity.

To Laura, the National Alzheimer’s Project Act is incredibly personal. It is the number one leading cause of death in people with Down syndrome, and the community is often left out of necessary resources and supports because the disease can be so early onset in them. Over 90% of people with Down syndrome will get Alzheimer’s disease, and researching more on it can save lives of people with Down syndrome as well as other people who get the disease.

The NDSS website states:

“NDSS calls on Congress to improve supports for the Down syndrome community related to Alzheimer’s disease, encompassing supports for patients with Down syndrome, their caregivers, and the healthcare providers upon whom they rely for diagnosis and treatment. Additionally, NDSS supports coverage determinations that ensure access to and coverage of safe and effective Alzheimer’s treatments.”

Additionally, the prestigious Self-advocate of the Year Award, chosen and presented by the NDSS was also awarded to a man from Massachusetts this year, Matthew Cullen of Ipswich. His award was presented by Congresswoman Katherine Clark.

Altogether, the Framingham residents met with legislative aides and staff associates  at Ed Markey’s office, Elizabeth Warren’s office, Bill Keating’s office, Jim McGovern’s office, Katherine Clark’s office, and met with Congressmen Jake Auchincloss himself.

Cheryl, Jordan, and Laura feel it was a privilege and honor to represent Framingham in lobbying for the most prevalent issues facing the Down syndrome community. They plan to continue their efforts in advocacy in July, where Jordan and Laura will be presenting at the National Down Syndrome Congress Conference in Orlando, FL.