World Down Syndrome Day: How a Mothers’ Personal Story Continues to Make a Difference
By: Maggie Garbarino
Every year, World Down Syndrome Day is observed on March 21st, a date symbolically chosen to represent the triplication of the 21st chromosome which causes Down syndrome. Advocates in New Jersey, and all over the country, work to ensure that the one in every 700 babies born in the United States with Down syndrome have access to inclusive education and employment opportunities and are seen as valued members of the community.
Recently, I had the opportunity to speak with Dria Law, co-chair of Knowledge and Information about Individuals with Down Syndrome (KIIDS). KIIDS is a non-profit organization based in Southern New Jersey that raises awareness about Down syndrome while supporting families in the area by providing them with resources and information.
As the mother of a teenager with Down syndrome, Law knows exactly what it is like to be both a parent and an advocate for her child. Law began to understand the importance of advocacy when her daughter started elementary school.
Law went on to say, “This is often similar for many families who have a child with Down syndrome, the first few years are about getting used to a new reality as you’re learning and focused on your child and immediate life. As my daughter got older, in addition to advocating for her and her educational and physical needs, I met many other folks in our community and started to see a broader need for legislative advocacy for individuals with Down syndrome by getting involved with some of the national organizations.”
Law and her daughters outside of the U.S. Capital after speaking with elected officials about issues important to the Down syndrome community.
Law knows just how critical it is to have a strong community to lean on. Law says, “Finding that local community is so important. It lets you connect with other people who understand what you are going through and can provide you with resources.”
Over the years, KIIDS has been that community for many families of children with Down syndrome. The organization was founded in 2003 by a handful of families who had newborns with Down syndrome and, over the years, membership has grown to about 115 families. The organization puts on events and activities to provide information, social, and educational outlets for members. Due to the ongoing COVID-19 pandemic, many of these events have been cancelled as the organization adapts to providing services for their members without meeting face-to-face.
The impact of the pandemic can also be observed in the top policy priorities of advocates for individuals with Down syndrome. Due to the pandemic, a new concern which has quickly become a top priority for advocates is COVID-19 relief and vaccine priority. According to the Center for Disease Control and Prevention, individuals with Down syndrome are at an increased risk of severe illness making it critical that they receive the vaccine. In New Jersey, individuals with Down syndrome are placed in Phase 1B and are currently eligible for vaccination; however, there are still concerns about family caregivers and their eligibility to get vaccinated.
Other legislative priorities for this cause are related to matters such as education, employment, and health care. Advocates across the country work tirelessly to ensure that individuals with Down syndrome have equal access to education and employment opportunities by supporting federal and state legislation. In New Jersey, the Every Student Succeeds Act (ESSA) and the Law Against Discrimination (LAD) prevent individuals with disabilities from being discriminated against in their efforts to obtain an education or find employment. While advocates have had success enacting this legislation, we can always do more to ensure that society is inclusive at all levels.
In regard to how advocates push their policy priorities forward, Law says, “The number one thing I was taught was to tell your story. I know it’s cliché, but the most effective advocacy tool for individuals and families is telling your personal story. Legislators hear from paid lobbyists every day and when you hear from an individual about how something affects them personally, it can really have an impact.”
Although progress has been made, there is still more we can do to ensure that individuals with Down syndrome are fully included in every aspect of society. As for how you can get involved, New Jersey residents can make a difference simply by spreading awareness and supporting legislation that protects the rights of individuals with Down syndrome. It is our responsibility to create a world where everyone is given the opportunity to lead a fulfilling, meaningful life.
Law runs for Board of Education (and wins!) to advocate for inclusive education opportunities in a new way.
If you want to contribute to KIIDS, Law says, “We are always incredibly appreciative of financial support. In addition to that, spreading accurate and updated information about what Down syndrome is while learning how to be inclusive and how to help promote opportunities for individuals with Down syndrome is equally as important.”
About The Author: Maggie is a PR and Social Media Intern at the Lesniak Institute for American Leadership. She is also a senior at Fairleigh Dickinson University where she is double majoring in Communications with a concentration in Public Relations and Political Science. Maggie aspires to help her community by advocating for progressive social justice policies.
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