World Down Syndrome Day is March 21, 2021. Because of awareness campaigns like this, the outlook is brighter than ever for those with Down syndrome and their families. To introduce you to what is going on locally, we introduce Tia Marsili, Director of Trusts for the Arc of Northern Virginia. Thank you, Tia! The information below is very meaningful.
Mission of The Arc
The Arc and its chapters promote and protect the human rights of people with intellectual and developmental disabilities and actively support their full inclusion and participation in the community throughout their lifetimes.
The Arc will celebrate its 59th anniversary on the same day as World Down Syndrome Day.
What is your role at Arc?
I am the Director of Trusts. Primarily, I oversee our special needs trust (SNT) program and staff, develop program initiatives, counsel parents, work with people with disabilities, establish SNTs, collaborate with agencies and attorneys serving our beneficiaries, educate families and others in the community about SNTs, assist with futures planning, including benefits – using a holistic approach and person-centered planning.
On a personal note, I’m the mother of two young-adult daughters with Down syndrome. Skye is 21, and Sheridan is soon to be 27. My life changed completely in 1994. I went from being a sinologist, the study of Chinese culture, to an advocate. What my daughters have taught me and the community around them is unforgettable and significant. I believe I am a better person because of them.
What does World Down Syndrome Day help to accomplish?
The event hopes to raise public awareness, promote inclusivity, encourage advocacy and support the wellbeing of those living with Down syndrome.
Do you have some activity ideas for World Down Syndrome Day?
A newer tradition is to wear mismatched socks. John’s Crazy Socks is a social enterprise inspired by John Lee Cronin, a young man with Down syndrome and his dad. Buy a pair or create your own!
DSANV also has its 2021 calendar for sale. It’s full of beautiful photos and dreams, events and programs!
What have parents done differently for their children with special needs because of the pandemic?
During the pandemic parents with and without children with Down syndrome have been trying even harder to stay sane! Seriously, most people have been spending more time outdoors, joined in more virtual activities than ever before, coming up with even more creative ways to teach and keep their children engaged. As part of the change required over the last year, The Arc of Northern Virginia has gone virtual as well. Facilitated roundtables, online seminars, trust consultations, trust appointments, etc. Our staff members have continued to work from our home offices.
(The Arc has a blog about parent support groups during a pandemic.)
Please tell us about your fundraising breakfast on March 25 and how people can participate.
The Arc of Northern Virginia’s “A Life Like Yours” Benefit Breakfast is an annual event that raises funding required to provide information, education, direct support services and advocacy to meet the needs of the 39,000 individuals with intellectual and developmental disabilities of all ages and their families in Northern Virginia.
This year’s breakfast theme is “Defined by Strength and Resilience.”
There is no cost to attend the breakfast and no minimum or maximum suggested donation. It will be up to us to inspire you with the stories of those we serve. We would love for you to hear first-hand what The Arc of Northern Virginia does, and meet some of the people whose lives have been changed for the better.
We hope you’ll pour yourself a cup of coffee, fix yourself a nice plate or bowl, and join our virtual breakfast gathering. You’ll hear inspiring stories of perseverance and determination, while understanding the role The Arc of Northern Virginia plays in creating communities that support those with disabilities and the people who care for them.
If you have questions about Down syndrome resources, Special Needs Trusts or getting through the healthcare system maze, please don't hesitate to contact us at Miorini Law. We are here to help.
Source: Global Down Syndrome Foundation