Dear MDSC member,
While our state, nation and world continue to grapple with the impacts and implications of Covid-19, we at MDSC and in the Down syndrome community are moving forward with cautious optimism for a brighter future.
This summer and fall are shaping up to be far different than we might have wanted or expected. Nonetheless, there is much to look forward to, and we are determined to help you navigate this new landscape with as much helpful information, tools and resources as possible.
Read on below for more about everything we have been doing and what we have in store.
Re-positioning Programs to Serve Our Families
Over the past few months, MDSC has made significant changes to the way we have historically done things in order to serve our families and community in the most effective way possible:
- We have repositioned our programs and services virtually (including our Annual Conference), and created new program opportunities for families and self advocates based on social distancing standards.
- We have made concerted efforts to support our families with the most immediate and pressing needs, including by providing education and homeschooling supports as well as timely medical/health information.
- We have ramped up our communication and collaboration with our local and national disability partner organizations and legislative leaders to address policy concerns, including ones that have come to the fore because of the current pandemic.
Supporting You & Your Family During Re-opening
As our state moves forward with a tentative re-opening process, we are here to support you in keeping you and your loved ones safe while you go back to work, school and other community activities.
MDSC signed onto a letter
from our partners at 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.)
Finally, we invite you to join us on July 21 for a webinar on
Safety Considerations as the Re-Entry Process Begins
As a society, we are gradually reopening as the COVID-19 pandemic continues, but what does that mean for people with Down syndrome as they make plans to re-enter their communities? Join
Dr. Brian Skotko of Massachusetts General Hospital
Dr. Nicole Baumer of Boston Children’s Hospital
Dr. Helen Lyon of UMass Memorial Medical Center
as they answer frequently asked questions on this topic, share the most accurate up-to-date information, and provide resources to guide this process.
Statewide & National Advocacy
TAKE ACTION: 4th Covid Relief Package
MDSC is working alongside our national partners at
National Down Syndrome Congress
National Down Syndrome Society
to ensure that the needs of people with disabilities are adequately addressed in the next Covid-19 relief package. Despite the passage of three major and several smaller bills to address the Coronavirus pandemic, Congress has yet to prioritize disability-related issues in its Covid packages.
Please help us by calling MA senators Ed Markey and Elizabeth Warren and asking them to to support the priorities of our disability community and to pass their support on to Senate Leadership, who will ultimately decide the contents of the legislation. This is especially important while Congress is on recess.
DDS Issues Phase 3 Guidance
As Massachusetts entered Phase 3 of its reopening plan on July 6, the state's Department of Developmental Services has issued
a series of guidance for families
based on continued declines in new positive COVID-19 cases and across the state at DDS homes. The link above includes:
- Reopening Day and Work Programs Discussion Guide Packet
- Return to Day Program Risk/Benefit Discussion Tool
- Phase 3 EOHHS Day Programming Guidance
- Phase 3 EOHHS Day Programming Planning & Preparation Checklist
- Phase 3 EOHHS Day Programming Transportation Planning Checklist
In addition, DDS has issued
revised Visitation Guidance
. In a message, Commissioner Jane Ryder credited “the extraordinary efforts of our residential staff, families, and the individuals we support”.
The revised visitation guidance, which includes extending current time limits for group home visits as well as guidance on safe physical contact with loves ones, were developed with the Massachusetts Department of Public Health to ensure safe visitation. Commissioner Ryder noted that the new policy “is contingent on everyone continuing to be vigilant in wearing masks, maintaining social distancing, and following the safety protocols outlined in the visitation guidelines.”
TAKE ACTION: Accessory Dwelling Zoning Relief
"Accessory Dwelling", also known as "In Law Suites", can be an ideal housing arrangement for many of our families, often proving a stable, long-term living situation with equal parts independence and support. Local zoning laws have often been a barrier to families taking full advantage of this option. However, while individual bills filed in the legislature to provide statewide relief have not advanced, there is currently a unique opportunity for similar language to be inserted in Governor Baker's House Choice Bill.
The need for additional viable housing options has come into extreme focus during the Covid pandemic when nursing homes, long-care facilities and other congregate settings have faced particular challenges. We are proud to join with other disability advocates, like The Arc of Massachusetts, in requesting that the House Choice Bill include Accessory Dwelling language.
Dedicated Home & Community Based Services Funding
MDSC has signed onto a letter by the Consortium for Citizens with Disabilities asking that dedicated Medicaid funding for Home & Community Based Services (HCBS) 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 HCBS 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.
MDSC Statement on Race Relations and DS Community Discussions
Last night, our national partner, the National Down Syndrome Congress, hosted a follow up Town Hall to continue engaging community members for an open discussion around the state of race relations in the world today. Once again, longtime MDSC member and leader of our Diversity Task Force, Roxanne Hoke-Chandler, co-recipient of the 2015 Allen C. Crocker Award of Excellence, was a panelist. We will post the recording when it becomes available. Meantime, r
ead MDSC's statement on inclusion and Black Lives Matter
NDSC's first Town Hall on June 16.
Virtual Programming for Families Across the Lifespan
Bingo for AIM & SAAC (teens and adults with Down syndrome and friends, ages 13 and up)
Saturday, July 18
10 am on Zoom
New Moms Support Group
Monday, July 20 from 6:30 - 8pm
For moms whose child is 0-18 months
This group meets the 4th Monday evening of the month for 3 months
New Hampshire Moms
Monday, July 20 from 1:30 - 2:30
For mom of kids 0 - 10 years old
Grandparents: Sharing & Caring
An MDSC Conference Live Workshop
Friday, July 24, 10am
For Grandparents of children with Down syndrome to share and connect
Making Healthy Choices
Wednesday, July 29
1:30 pm on Zoom
New Family Social
Saturday , August 1 from 10 - 11am
For families with little ones 0-3 years old.
Dancin’ with DJ Dan for 4-12 Year Olds
Wednesday, August 5, 4:30 - 5:15 pm
Our 4-7 AND 8-12 playgroups will gather virtually
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!
Upcoming Events to Raise Awareness & "Gather" as a Community
Annual Virtual Conference
You can still sign up for full access to our "
Trailblazers" Conference: Paving the Way to a Bright Future Through Innovate Research. This, our 36th Annual Conference, is our very first Virtual Conference!
On our custom Annual Conference website, you can enjoy our 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 -- or go straight to exploring everything our conference has to offer.
Buddy Walk Reimagined
Join us on October 11th for our
MDSC CARES Buddy Walk in Your Community. We're proud to have reimagined our traditional Buddy Walk so that you can 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.
Sign up your team today!
Webinar: Translating Down Syndrome Neuroscience Research
Tuesday, July 28, 10 - 11 am
As people with Down syndrome age, the risk of developing Alzheimer’s disease (AD) increases significantly. The Tsai Lab discovered that by boosting gamma power, they could reverse AD related pathology and improve memory in mouse models of AD & DS. They developed a device that boosts gamma power in people using light and sound to improve memory in AD patients and individuals with Ds. In addition, the lab is using human pluripotent stem cells to generate the different types of cells in the brain, to study the mechanisms of how Trisomy 21 has such a large impact on brain function.
We are excited to announce that our 16th Educators Forum will be virtual! Set to launch this fall, the conference will include a combination of recorded presentations and live, interactive workshops for education professionals and families of school-aged children.
Join keynote speaker Paula Kluth, PhD, who will present on
5 Ways to Create Better Schools for All and other nationally renowned experts in the field of education to gather tools and resources for supporting students with intellectual and developmental disabilities.
Falmouth Road Race
The beloved Falmouth Road Race is going virtual! This means that no matter where you are -- even hundreds of miles from Cape Cod -- you can participate.
It's now called the
2020 New Balance Falmouth Road Race Home Edition
, and your can run the 7 miles in your own neighborhood any time between August 15 and August 29. And since there's no time limit, you can even walk the race! Each runner pledges to raise funds to support the MDSC.
Every registered participant will receive an official personalized bib, a New Balance shopping bag, a buff, all-summer access to a dynamic virtual gift bag of coupons and special offers, access to an “At-Home Edition” playlist on Spotify, a training program, online contests - including a chance to win a private Zoom session with elite athletes and VIPs.
Together, this group of remarkable individuals have collectively raised more than $60,000. The historic Boston Marathon will now be held virtually this fall, and Team MDSC continues to raise funds for MDSC programs and services during our time of greatest need.
We appreciate everything they are doing to ensure that people with Down syndrome have the opportunity to live full, rich lives in their communities and have the resources and supports they need during the current coronavirus crisis.
I would like to thank all our extraordinary members and supporters for their remarkable efforts working together at this time to achieve our shared mission of acceptance, inclusion and supporting our families in need.
MDSC's new Annual Report,
which highlights the depth and breadt
of our programs to support individuals with Down syndrome and their families.
In particular, I am excited to welcome our new Board of Directors members, Dave Granfors, Jonathan Tabasky, Esq., and Angelique Uhlmann, MD, JD, who are joining our
dedicated and accomplished board
, which is continuing to pave a path for a bright future for MDSC and our members.
I also want to call out our amazing Support Group Leaders who continue to serve our families across the state (MDSC collaborates with
more than 20 local Support Groups around the Commonwealth
to share experiences and strategize on how to advance our mutual goal of strengthening supports for people with the Down syndrome).
How You Can Help Too!
MDSC CARES Campaign
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.
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.
So many of us are ordering supplies and necessities for our new home-based lifestyles. When you do your Amazon.com shopping, why not support your loved ones with Down syndrome at the same time? Just go
directly to this link
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.
As we continue to face the challenges in our country together, please know that all of us at the MDSC are thinking of you. We'll be here to continue to provide the critical resources, supports, and advocacy that is more important now than ever before. Please don't hesitate to reach out to us at
at any time.
Best wishes to you and your family to stay healthy and safe. Together we will ensure that our community makes critical strides to ensure our loved ones with Down syndrome have every opportunity for a meaningful, fulfilling life.