Often times, many with or those who are close to those affected by Down syndrome are unable to find the proper help and outreach they need. With this being a condition we are familiar with, it is most definitely a great significance for such a support system to be set in place.
This is where the National Association for Down Syndrome comes in; with their help, many individuals and their families have received the proper care that is needed. The first of its kind and an established organization that serves not only its area, but often times out of country as well, NADS is here to help.
National Association for Down Syndrome
I had the upmost delight of interviewing Mrs. Linda Smarto, the Executive Director of the National Association for Down Syndrome. We had a face-to-face interview (virtually) over the mission of NADS and the details, such as involvement, the future, and resources.
Kate-Yeonjae Jeong: How did the National Association for Down Syndrome begin, and what is its mission? What are the goals hoped to be accomplished?
The NADS organization was founded back in 1961 with the mission to ensure that all persons with Down syndrome have the opportunity to achieve their full potential.
In 2021, the National Association for Down Syndrome will be celebrating its 60th year as an organization in establishment; since its beginning, the organization has certainly come a long way.
"Our goal would be to continue to provide support to our individuals with Down syndrome and their families, as well as expand on educational outreach to further promote inclusion and acceptance in the Down syndrome community," says Mrs. Smarto.
The Greatest Accomplishment
Kate-Yeonjae Jeong: What would be said to be the National Association for Down Syndrome’s biggest accomplishment in regard to its mission?
"The amount of families that we have served over the years gives us a sense of pride," replies the National Association for Down Syndrome, "Knowing that we are the oldest organization in the country, and the first of its kind that was established here in Chicago, Illinois, is one we consider to be one of our biggest accomplishments."
Not only that, the National Association for Down Syndrome also helped start the first adult Down syndrome center located in Partridge, Illinois- also the first of its kind. The organization additionally gave its support and hand in funding for the medical facility for populations to become a reality.
"In addition, the numbers of families we have assisted over the years and the expansion of education at universities for students, teachers, doctors, nurses, fire and police departments is something we are extremely proud of," says Mrs. Smarto.
Provision of Resources
Kate-Yeonjae Jeong: How is the National Association for Down Syndrome providing a resource for those in need of guidance regarding down syndrome?
"Now with the global pandemic, the way we provide resources has changed a bit. We most commonly respond to emails and phone calls from all over the United States and often out of the country. Although our organization has "National" in it, we primarily serve the Chicago metropolitan area. However, we never turn anyone away and do our best in providing resources to whomever contacts us."
One of the things NADS is known for and has done well over the years has been the ability to quickly address any requests that come in with a prompt turnaround time. This is particularly important with a pre-natal and at birth diagnosis.
Three times a year, NADS offers a workshop for the families whose loved ones have been diagnosed with Down syndrome plus another diagnosis such as Autism or ADHD. Typically these workshops are held in person, but now we have been offering them virtually. This has been successful, since those who are out of state can also join the group.
Their main goal is to work with the hospitals in providing the families with the information and resources that NADS provides. NADS offers an online referral program, so that whenever a baby with Down syndrome is born, they are automatically connected with a Support Parent. In which case, a Congratulations basket is delivered (usually to the hospital by a volunteer), but currently being dropped off on doorsteps to their homes or delivered by mail.
Additionally, the National Association for Down Syndrome is proud to continue congratulating and celebrating the many families they serve; with participating in 46 hospitals, their goal is to provide resources, such as an online referral program, and work closely with the hospitals anytime a baby with Down syndrome is born in the areas they are currently serving. Each family is provided with Congratulations baskets filled with resources, which also include local organizations' information as well to offer a variety of options.
Speaking of options, the National Association for Down Syndrome's website can be translated into 10 different languages with resources for not only parents, but for grandparents and siblings as well. "Providing that extra support is helpful to the entire family, especially when English in not their primary language," states the National Association for Down Syndrome.
Parent Support Groups
With having the support from volunteers, parents are able to feel comfortable in asking questions and addressing concerns that the volunteers have most likely experienced.
"My family still remains in touch with our support parents who helped us twenty-six years ago.," says Mrs. Smarto, "So thus, we give our all to try make a connection and reach that family upon receiving the diagnosis, which is key. We hope for the National Association for Down Syndrome to serve as a hub to gather resources for families and to allow them to benefit from the programs that are offered."
We hope for the National Association for Down Syndrome to serve as a hub to gather resources for families and to allow them to benefit from the programs that are offered. -National Association for Down Syndrome
The Effect of COVID-19
Kate-Yeonjae Jeong: Has COVID-19 changed any of the system structure for the National Association for Down Syndrome’s provision of services? If yes, how so, and moving forward, how will people be able to access these resources?
"We were concerned when Covid-19 restrictions first came about, because the majority of our outreach was in person presenting to hospitals, schools, Fire/Police Depts., etc. Due to the pandemic, we started connecting virtually. Including our "Self Advocates In Action" group for our adults who usually would meet on a monthly basis to do service projects or gather socially, began meeting on Zoom weekly. Each week there are games, events or specialties shared amongst different hosts. It's very popular and has been beneficial for so many of our participants," says NADS.
Luckily, NADS was able to get their Bowl-a-thon in early March, just one week before everything was shut down. Unfortunately, the Biannual Conference that NADS hosts for parents and professionals to attend was planned for August and hopefully will be reschedule for 2021. "The pandemic did cause some unexpected surprises, but interestingly enough, we have seen an increased numbers of referrals from the hospitals of baby's born with Down syndrome," says NADS, "In just five weeks, we have seen 25 referrals opposed to just 5 or 6 in a month."
Kate-Yeonjae Jeong: Where do you hope to see the National Association for Down Syndrome’s organization in 10 years?
"I would like to see all of our programs expanding, and to work collaboratively with other Down syndrome organizations," says Mrs. Smarto, "I think such a collaboration would be beneficial, as at the end of the day, our mission is the same- to help our individuals with Down syndrome and their families."
The National Association for Down Syndrome hopes to see growth not only in separate entities, but through working together.
October is Down Syndrome Awareness Month
Kate-Yeonjae Jeong: What events/organized movements will the National Association for Down Syndrome be participating in the light of October's designated awareness month?
"Next to the Bowl-A-Thon, we also have our biggest fundraiser, The Fashion Show," says the National Association for Down Syndrome, "The runway consists of 40-45 models ranging from infancy to adult, with whom all have Down syndrome. We typically have about 600 people in attendance, along with several guest speakers and acts, and it's a big event."
With the pandemic, the fashion show was no doubt a challenge, but things are falling into place. "With October being Down Syndrome Awareness Month- and also Disability Awareness Month- we now have people from other states joining us, people crowdfunding for us, and working on a social platform to bring this virtual event to life on November 1st There will be raffles, auctions, and so much more- additionally, the models have submitted a photo and brief bios to accompany their model images and of their talents."
"The fashion show is ready to launch on November 1st," says Mrs. Smarto.
To The Heart
Kate-Yeonjae Jeong: As someone who is involved and works for the organization, what makes you the most content and proud about your career with the National Association for Down Syndrome?
"I became involved with NADS 25 years ago when my oldest daughter was born. I started out volunteering for the first 15 years and then joined on staff 10 years ago," says Mrs. Smarto.
"I think what makes me most proud is how we have carried on the legacy of those who started this organization: with the intention to give the utmost support to the Down syndrome community", continues Mrs. Smarto. "It makes me proud to be able to stand with NADS and aid in making a difference!"
We want to see our individuals soar- the sky's the limit. -National Association for Down Syndrome
How You Can Get Involved
Kate-Yeonjae Jeong: As a primarily Gen Z and young adult magazine, is there a way teenagers can be involved with the National Association for Down Syndrome?
"Teens are our future," says the National Association for Down Syndrome, "We enjoy receiving emails from interested students wanting to learn more about Down syndrome. We welcome teens to serve as volunteers to assist at our events. Their enthusiasm and help is both needed and appreciated."
"Teens will be the next generation working with our population and making positive changes. The more that they become educated about Down syndrome, the more comfortable they will be in helping our community," says Mrs. Smarto.
Just your support in any form, whether it be a donation of your time, support, or talent- is immensely helpful.
Biggest of thanks to Mrs. Linda Smarto and the National Association for Down Syndrome for the amazing interview-- The Teen Magazine is honored to spread word of this mission and to share for more awareness on this networking organization.
To keep up with NADS, make sure to follow them on Instagram here @nadschicago.