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Teen & Adult Programming

Our MDSC team has been working on ways we can continue to connect teens, adults and their families through our Advocates in Motion and Self Advocate Advisory Council programs.  To learn more about getting involved in AIM or SAAC, our program for teens and young adults ages 13-22 and parents,  contact Colleen .

Teen & Adult Summer Salsa Party 

Our teens and adult self advocates last weekend got together for a Virtual Summer Salsa and Drumming Party to kick off the summer. Check out Johann playing the djembe. 

Save the Date: July 18th 
Join our next teen & adult Zoom event - more details coming soon.

Making Healthy Choices
with SAAC member Kate Bartlett -  July 29 at 1:30  
Do you have questions about how to eat healthier? Join us to learn from Kate as she shares tips she has learned and answers your questions. We will end with a fun trivia game! Email Colleen at to register. 

Newsletter for Teens & Adults
MDSC's regular  Newsletter for Teens & Adults includes fun ideas and activities while you stay safe at home, including  favorite ways to stay active, entertainment ideas, and the parent corner.  Check out the latest newsletter and send us your videos, photos and stories, so we can include them in an upcoming edition!
Trailblazers: Paving the Way to a Bright Future Through Innovate Research
Sign up now for full access to our "Trailblazers" Conference

We are thrilled to bring you our 36th Annual Conference and our very first Virtual Conference! 

Register for our custom Annual Conference website to enjoy our Opening Ceremony or go straight to exploring everything our conference has to offer! Sign up now for full access to our 2020 TRAILBLAZERS Conference. 

This includes the  Opening Ceremony , featuring  Zack Gottsagen of Peanut Butter Falcon John Cronin of John's Crazy Socks , remarks by  MA DDS Commissioner Jane Ryder  and the presentation of our  6 MDSC Annual Awards !
It also includes  20+ workshops by Down syndrome experts  around the country , and  14 special "By Self Advocates for Self Advocates" workshops. 

Plus, our  Exhibitor Gallery  and more information about our  generous Sponsors .   Also, once on the site, you can  sign up for our  Live Interactive Workshops , where you can  share stories and learn in a private setting with fellow moms, grandparents or siblings  or even learn how to   Craft Your Own Story in a special  storytelling workshop

Everything (except the Live Interactive workshops) will be available through the end of the 2020 calendar year! See here for an overview of all the workshops now available.
Congratulations to our 2020 MDSC Award Winners!

Every year, at our Annual Conference, we present awards in a range of categories to leaders throughout the state who exemplify our values of acceptance and inclusion as demonstrated through their extraordinary work and volunteer efforts. 

This year, we presented the awards during the Opening Ceremony of our Virtual Conference. Register here to watch the full Awards presentation, including acceptance speeches. You will gain access to the full Opening Ceremony and the 20+ conference presentations. 

South Shore Mothers Support Group
46 years ago, when Taffy Nothnagle and a small cadre of moms from Scituate joined forces to advocate for their children with disabilities, the South Shore Mothers Support Group was born. Their objective was simple - to ensure their children got the best education possible. Over the years, they've made tremendous gains and had personal losses, and have grown gracefully into the role of mentors.

John Hancock Non-profit Marathon Program
As a principal sponsor of the Boston Marathon, John Hancock's Non-Profit Program donates bibs to run the historic race to organizations like MDSC. Over the past 8 years, our John Hancock partnership has been a crucial part of our fundraising and public awareness portfolio, raising more than $800,000 for essential programs and garnering invaluable media exposure.

Stephen F. Narey
Few people have committed themselves to the Down syndrome community and MDSC as Steve Narey: 11 years on the MDSC Board of Directors, 3 years chairing the Personnel Committee, 3 years chairing the Board. Plus, his leadership - as a practicing attorney with vast expertise, a staunch advocate for our policy platform, and a key leader in western MA - has been invaluable.

Bunratty Tavern
When Bunratty Tavern owner Eilish Havey was asked about Samantha Gibbs shadowing a hostess to learn about the restaurant business, Eilish didn't hesitate. Eilish brought on Sam for the summer and insisted on paying her, just like she would any other worker. Eilish then fostered the ideal work environment for Sam. "Every single person in that bar has taught Sam about responsibility, expectations, attitude, and work ethic," Sam's mom says.

Boston25 News
MDSC's relationship with Boston25 News started 20 years ago with the eminent anchor Gene Lavanchy. Since then, the entire news staff have championed our community, reporting about us with sensitivity, complexity and compassion. Heather Hegedus, Mark Ockerbloom, and Vanessa Welch have all emceed our major events and covered important stories. Behind the scenes Director of Community Affairs Maggie Hennessey-Nees has been a key figure.

Kerry Bremer
Four years ago, as a dedicated special education teacher, Kerry met Jake Manning, who has Down syndrome. As she helped him get the supports he needed, she also got to know his mom, Jean, who had stage 4 breast cancer. Last November, when Jean passed away, the Bremers, including their 3 kids, embraced Jake, making him a part of their forever family.

Register your team today for our Buddy Walk Re-imagined!

On October 11th you'll walk in the morning and join us for our biggest virtual celebration ever in the afternoon. We will have live-streaming entertainment, special guest speakers, and self-advocate cheers.And, to help us celebrate during this challenging time, we'll be sharing lots of photos of our community coming together.

We hope you will join us in October to ensure that all MDSC's programs, advocacy and awareness initiatives stay strong!
As the Covid-19 outbreak evolves throughout the country and here in Massachusetts, MDSC continues to advocate on national and statewide public policy efforts to protect our loves ones with Down syndrome & other disabilities from being disproportionately or unfairly impacted. 

Town Hall on Race Relations

Our national partner, the National Down Syndrome Congress is hosting a follow up Town Hall on Thursday, July 16  from 7pm-8:30pm to continue engaging community members for an open discussion around the state of race relations in the world today, the longstanding history of racism, the justice system, healthcare, and education and other societal systems. 

Longtime MDSC member and leader of our Diversity Task Force, Roxanne Hoke-Chandler who is the co-recipient of the 2015 Allen C. Crocker Award of Excellence, will be on the panel. Join the conversation to discuss the inequalities that exist for the Black community and explore how we can all do better.  Register here.

MDSC supports request for dedicated HCBS funding

MDSC has signed onto a letter by the Consortium for Citizens with Disabilities asking that dedicated Medicaid funding for Home & Community Based Services be included in the Congress' next COVID relief package.

This funding, which would provide critical assistance for people with disabilities and aging adults, was included in the HEROES Act, which passed the House. But the language still needs to be included by the Senate.

Dedicated HBCS funding is necessary to support the workforce that provides critical services to people with disabilities and aging adults, the service providers that employ that workforce, and the people who rely on those services to live safely in their homes and communities. 

Updates on visitation policies

In March, DDS stopped all visitation to state-run group homes and facilities in response to the COVID-19 crisis in order to keep residents and staff safe and stop the spread of the virus. On June 10, new guidance was issued for visitations at DDS Residential Programs.

While the new guidance allows for in-person visits, it still includes restrictions meant to keep residents, visitors and staff safe. This includes meeting outdoors only, screening visitors for symptoms of illness and fever, wearing face coverings, and no touching.

According to DDS Commissioner Jane Ryder, "We will continue to enforce proper procedures in infection control, cleaning, good hygiene, and the wearing of PPE. And we will continue to track the virus by monitoring the health of our residents, tracking positive cases, and making testing available to individuals and staff."

Commissioner Ryder noted that the visitation policy will be further revised when possible.  Read the full visitation policy here.

Our partners at the Disability Law Consortium have released an  updated guide on health care rights, Know Your Rights , which includes  NEW important information on hospital visitation, accommodations and rationing.
Covid-19 Education Resources & Tools 
We have gathered a wealth of education resources and tools related to Covid-19 that are vetted and being constantly updated. This includes resources, curriculum materials, subscriptions, virtual tours, field trips, social stories, practical tips for caregivers and legal matters.  See the complete list here. 

MA Statewide Family Engagement Center needs your feedback
Are you the parent or guardian of a child currently attending school in Massachusetts? The Massachusetts Statewide Family Engagement Center (MA SFEC) wants to hear about your experiences related to how schools and families interact and support one another. How does your child's school keep you informed? How are families involved at the school? What improvements do you want to see?
MA SFEC is conducting a survey to learn more about the relationships that schools and families  have with one another. It is important for the MA SFEC to hear from all families, especially those within the disability community. This survey asks about your experiences and will inform efforts to help promote and increase family engagement with schools. Your answers will be kept confidential by the MA SFEC team; no school or district personnel will see your responses. The survey will take 5-10 minutes to complete.
If your child or youth attends a Massachusetts school in Pre-Kindergarten through 12th grade, please complete this online survey to help them learn about your experiences.
This year, the family survey and postcards are available in the following languages: English, Spanish, Portuguese, Chinese, Arabic, Haitian Creole, Vietnamese. For questions or help completing the survey, please contact Ryan Miskell with MA SFEC at 202- 471-2463

State extends Early Intervention services for 3-year-olds
Mass Health has issued a bulletin that extends Early Intervention (EI) services to children who may have been impacted by the Covid-19 pandemic.

The new procedures will benefit children with disabilities who receive EI services and turn 3 between March 15 and August 31, 2020, ensuring that they don't face an abrupt end to services.

According to Mass Advocates for Children, whose petition MDSC signed, under the new guidelines, eligible children can continue to receive EI services after they turn 3. Furthermore, EI programs can now start providing these children's IFSP services through October. And, EI programs can provide IFSP services even if he or she was already discharged from EI on their 3rd birthday.

If you want your child to continue receive EI services, call or e-mail your early intervention provider and tell them that you want EI to continue to implement your child's IFSP during the COVID-19 emergency.

MDSC advocates for State to ensure people with disabilities are kept in mind when re-opening schools
MDSC has signed onto a letter from Mass Advocates for Children asking the state Department of Early & Secondary Education, when setting policy to reopen schools, to consider the needs and challenges faced by students with disabilities.

Among the concerns are that some students with disabilities may be unable to safely wear masks; new safety procedures may cause increased anxiety for students who experience difficulty adjusting to new routines; and many students with disabilities will require 1:1 services that require physical contact and make social distancing impossible. There is also concern that social distancing requirements may result in the separation of students with disabilities from the general education classroom, inconsistent with their needs and in violation of state and federal education law. 

Family Support Programming

MDSC's Parents First Call Program is a national model for serving and supporting parents of children with Down syndrome, including new & expectant parents. Parents First Call provides opportunities to connect with others who have had the same experience to listen, share, answer questions, and provide valuable information.

Our family support team is now actively supporting families virtually and has many online support groups now forming. Please contact Sarah at to learn more about any of the gatherings below and to let us know how we can help.

Wednesday, July 8 from 2-3:30pm
Single Moms Group
Please email Sarah Cullen at for Zoom link

Thursday, July 9 from 7-8pm
21 Shades Family Support Group Zoom Call
For families of color 
Please email Sarah Cullen at for Zoom link 

Saturday, July 11 from 10-12
Live New Family Workshop
Register for just $29.99 per household for the entire MDSC Virtual conference to then get free access to register for this workshop! 
Go to

Sunday, July 12 from 4 - 4:45
Music and Movement with Kathlynn for 4-7 and 8-12 Groups
Please email Sarah Cullen at for Zoom link and with 1-2 of your child's favorite dance songs!

Wednesday, July 15 from 4-5pm
Prenatal Support Group
For moms/couples in the last trimester of pregnancy preparing to welcome a baby with Down syndrome
Please email Sarah Cullen at for more information

Monday, July 20 from 6:30 - 8pm
New Moms Support Group for moms whose child is 0-18 months
4 spaces left
This group meets the 4th Monday evening of the month for 3 months
Please email Sarah Cullen at if you're interested 
During These Turbulent Times, Support MDSC & Individuals with Down Syndrome 

Tribute Giving
Honor someone special in your life by making a donation in his/her honor to the Massachusetts Down Syndrome Congress. Tribute Giving is a way to recognize, honor and celebrate people that are important to you by giving back and supporting the mission of MDSC and the community it serves! For more information, visit our Memorial & Tribute Giving page of our website.

Facebook Fundraisers 
Consider organizing a Facebook Fundraiser for your birthday to support the MDSC mission to ensure all individuals with Down syndrome in Massachusetts are valued, included, and given opportunities to pursue fulfilling lives by providing information, networking opportunities, and advocacy for people with Down syndrome and their families, educators, health care professionals, and the community-at-large. To set up your Facebook fundraiser, go here. 

Today, in these uncertain times, we have received more requests than ever for support from our community, and we are stepping up to provide the critical assistance that can make a difference in as many lives as possible. Please help by contributing to our MDSC CARES Program, an expansion of Parents First Call, which supports families when their children are hospitalized for extended periods or experiencing critical health challenges or other extenuating circumstances. Consider making a donation during these turbulent times to provide care packages and other supports for families and their children so they can feel the support and love from our community. Support MDSC CARES here. 

Amazon Smile
So many of us are ordering supplies and necessities for our new home-based lifestyles.  When you do your shopping, why not support your loved ones with Down syndrome at the same time? 
Just go directly to this link or to and select the Massachusetts Down Syndrome Congress as your charity of choice.  When you do so, a percentage of your purchases will support MDSC programs and services.   
Attend an Event Donate Now New Parents
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