April 26, 2023

Did You Know?


Despite being the most widespread chromosomal disorder in the United States, Down syndrome remains the least-funded major genetic condition in the country.

Please consider donating your time or resources to NADS so we can continue our support of the Down syndrome community through events, outreach, and education.

Support Us Today

🌷 Send in Your Mother's Day Photos! 💐

Please send in a photo of your favorite NADS mom in your life so we can honor her for Mother's Day!!


Childhood and Memorial photos are welcome!


Email photos to Ann at aleonard@nads.org!

Less Than a Week Away!

NADS Annual PUBLIC

Board Meeting


Monday, May 1, 2023

7pm (Central) on Zoom

Come see how NADS supports our community throughout the year and learn more about all we have to offer!

Sign up HERE to Join Us!

(Zoom link will be emailed out later this week)

AN IMPORTANT MESSAGE FOR OUR

ILLINOIS RESIDENTS:

The Arc of Illinois Requests Uses of the Live-in Caregiver Exemption from Illinois's Implementation of Electronic Visit Verification (EVV)

EVV is a federal mandate passed by Congress in 2016 via the 21st Century Cures Act that requires states to implement technology-based systems to verify personal care and home health care services provided during home visits. For purposes of the intellectual and developmental disabilities (IDD) system, this will specifically impact Personal Support Worker (PSW) services.


EVV requires real-time data entry. Because of the nature of live-in caregiving, and the often-immediate needs of the individual requiring support, real-time entry will be nearly impossible in many circumstances. Ultimately, families will face the need to edit EVV entries repeatedly throughout the day to comply with requirements. If shift entries are edited to reflect accuracy, that shift would be an “exception” and would not be EVV compliant. Additionally, continually having to edit shifts would be considered “burdensome” and certainly would impede the way care is delivered.


Several states have chosen to implement a live-in caregiver exemption. By electing to use a live-in caregiver exemption, Illinois would be engaging in best practice.

The Arc of Illinois is strongly advocating for a live-in caregiver exemption. This will alleviate the unnecessary burden of family members repeatedly clocking in and out at their own home when they are providing PSW services for an individual who also lives in their home.


Illinois is in the process of determining whether the live-in caregiver exemption will be implemented for this population. We understand that compromise may be necessary to find a solution that will be mutually beneficial for families and the state. The Arc of Illinois respectfully requests the opportunity to formally engage in discussions related to the policy for live-in exemption.

The remaining input session will be taking place:

Date: Friday, April 28, 2023  

Time: 9:00 a.m. – 10:00 a.m. 

Register HERE

Coming Up in June:

FREE MTDS Online Workshop!



WHEN: Saturday, June 24

9-10:30am (Central) on Zoom

TOPIC: Tips for Managing Difficult Behaviors


Please join us as we welcome guest speaker:

Heather Risser, PhD

Assistant Professor - Mental Health Services and Policy Program, Feinberg School of Medicine, Northwestern University


This FREE seminar is for parents/family/caregivers of a person (any age) with a dual diagnosis of Down syndrome PLUS Autism Spectrum Disorder. Registration Required.

RSVP Today!

Get Your NADS Merch Right HERE!!

Celebrate the beautiful Spring weather and show off your Down syndrome pride OUTSIDE!


Yard Signs, Car Magnets, Tote Bags, and more to accessorize your world with Ds pride!

Shop NOW!

NADS Golf Outing

Thursday, July 27


Get ready for a whole new adventure- golf, foot golf, dinner, and a dance party!


More details coming soon!

NADS Fashion Show

Sunday, October 1


Friends and fashion come together for this amazing event showcasing Down syndrome!


Stay tuned!

A HUGE THANK YOU!!


Once again Penn Station subs has outdone themselves with their support of World Down Syndrome Awareness Day!


Thank you to everyone who contributed to our "Round Up for Down Syndrome" campaign by enjoying delicious subs!


And thank you to Penn Station for always including NADS and being so generous!

Want to join the fun?

Email your pics to aleonard@nads.org

Thank You Special Gifts Theatre!

Thank you to all who joined in the fun and laughter that we had this week during our SGT improv session!

Mark Your Calendar...

Our next session is coming up on:

Wednesday, May 10

7pm Central


More details will be out soon!

Interested in joining the SAIA Group?

SIGN UP HERE!!

Down Syndrome Stories in the News

'Peter Pan' Star Makes History As First Actor With Down's Syndrome To Land Major Role In Disney Movie

A Peter Pan & Wendy star is making history as the first actor with Down's Syndrome to land a major role in a Disney movie. Noah Matthews Matofsky, 15, is set to star as Lost Boys leader Slightly in the 2023 live-action film, set for release on Disney+ on April…

Read More

Dundalk man selected for first-ever Ireland down syndrome futsal team

Jamie Linden, Fergus Cosgrove, David O'Hare and Liam Foley with organisers Sanet Jordaan (L) and Tessa van Heerden (R) The initiative has been spearheaded by the Louth and Meath Branch of Down Syndrome Ireland.

Read More

Maximize Your Impact!

Did you know that 65% of Fortune 500 companies offer matching gift programs?!


Be sure to inquire at work about corporate donation matching! Many companies even allow employees to submit match requests for 1 year following the date of the donation!

CLICK HERE to see if your employer offers this option!

If you would like to honor a loved one with donations to NADS, we would be happy to send you a packet of specialized envelopes for easy collection.


Email aleonard@nads.org for more information.

Celebrate your Birthday with NADS!

Don't need anything for your special day?

Spread the love you get from others within the Down syndrome community!


Designate NADS as a gift recipient by setting up a fundraiser on Facebook or by simply sharing this link with your friends and family:

http://weblink.donorperfect.com/nadsdonation

The NADS Shop has EVERYTHING you need to celebrate Down syndrome!!

Get your Down syndrome hoodies, mugs, and tees today!

Shop HERE!

Calling All Volunteers!!

Want to make a difference in the

Down syndrome community?


Come share your time and talent with us!

NADS is always in need of great people to help with events and activities! Please consider volunteering

or joining our NADS Board of Directors!

Click HERE to have a NADS member contact you!

For over 60 years, NADS has been a leader in the Down syndrome community. Please consider helping us carry out our mission: "To ensure that all persons with Down syndrome have the opportunity to achieve their full potential in all aspects of community life."


Your tax deductible gift will help us continue to educate, congratulate, and spread our message. Thank you for

your kindness and support of the National Association for Down Syndrome.

DONATE TODAY!
NADS | 630-325-9112 | info@nads.org | www.nads.org
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