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Dear MDSC Member,
Happy New Year!
2013 is well underway, and we have a lot in the works at the MDSC. We have an ambitious agenda packed with bold initiatives and proven longstanding programs.
As you will see below, we have been expanding at a startling pace to meet the needs of all our members and the challenges of a changing world. However, we are as committed as ever to remaining a grassroots organization that is personally connected to each and every family.
The work we do on behalf of individuals with Down syndrome and their loved ones would not be possible without the continued support of you, our members.
That is why we want you to know what's on our front burner for 2013...
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Public Policy Advances
There is perhaps nothing more important that the MDSC can do to advance our mission and support the Down syndrome community than push for solid, forward-thinking disability policy, whether on Beacon Hill, Capitol Hill or on the world stage.
ABLE Act
 
National Background Check Bill
 This bill would close a gaping loophole  so that employees who work with people with disabilities undergo a federal background check (currently only a state check is required). It has been one of our top statewide priorities for several sessions, but has never made it out of the House Ways & Means Committee. When we re-file it later this month, its chances for passage will have increased exponentially. It will have new language, a key disability champion behind it (Rep. Sean Garballey, right, will join longtime sponsor Marty Walsh, left), and the support of a broad coalition launched by the MDSC that reads like alphabet soup: DPS, DDS, EOHHS, DPPC, MDDC, DLC and The Arc.
Real Lives Bill
Last session, the Real Lives Bill came close to passage. But close isn't good enough. It will be re-filed in the coming weeks and we fully expect that the 188th General Court of Massachusetts will approve it and send it to the Governor. Sponsored by our good friend, Rep. Tom Sannicandro, Real Lives will change the way developmental services are financed and delivered for the tens of thousands of people with disabilities in the Commonwealth. It would allow individuals to determine how to spend their allocated dollars on the services and supports they need. See a fact sheet on Real Lives here.
Prenatal Bill
It was a tremendous victory in June when Governor Patrick signed our landmark legislation that will ensure that new and expectant parents who are given a prenatal diagnosis of Down syndrome get the latest, most accurate information. However, passage was only half the battle. Now, the law must be implemented. To that end, the MDSC has been in ongoing talks with officials at the Department of Public Health, who are mandated to get the information to health care providers, about which resources will be made available and how. We will keep you updated on this important legislation. See here for my overview of the Prenatal Bill just after it passed.
U.N. Treaty on Disability Rights
It seemed unfathomable that the U.S. Senate would turn its back on an international treaty modeled on the Americans with Disabilities Act that promotes equality, non-discrimination, inclusion, and accessibility. But that's exactly what it did last month, voting down the United Nations Convention on the Rights of Persons with Disabilities. The treaty, which is signed by 154 countries and ratified by 126, would encourage other countries to adopt our own standards and make life easier for disabled Americans abroad. We can't say why it didn't pass, but we can say that we - and 300 other disability organizations in the U.S. - will bring it back to the new Congress this year and fully expect different results.
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Expanding to Meet Our Members' Needs
Adults Only
Our Advocates in Motion Program for self-advocates 14 to 22 remains a signature program for us and continues to grow. But we have also made a concerted effort in recent years to expand programs and opportunities for adults with Down syndrome to serve individuals and their families across the lifespan. Here are three such initiatives:
MDSC-Approved Research
Launched last year, our Medical & Scientific Advisory Council has been busy vetting research projects to be shared with our membership. Most recently, they have approved a project by Liza Brecher whose history thesis project will explore the impact of the late Dr. Allen Crocker by interviewing parents (and other family members) whose children were seen by Dr. Crocker at Children's Hospital. See more about this and other approved research here.
Membership Assessment
In order to best serve our members, we are embarking on a membership assessment in the form of a comprehensive survey. Look for it in your inbox in the next 6 to 8 weeks. As we continue to grow, we need your feedback and guidance.
Meeting Complex Needs
We continue to strive to meet the needs of all individuals with Down syndrome and their families, including those with complex needs. Through a new partnership with Boston Children's Hospital, we are holding quarterly support meetings for parents of children with complex needs. The next meeting will be Jan. 26. See here for complete details. We are also meeting the needs of parents whose children have a dual diagnosis of Down syndrome and Autism. The Down Syndrome-Autism Connection has been an affiliate of the MDSC since last year.
New Parent/Grandparent Socials
In 2012, the MDSC launched a new program for parents and grandparents of "new" or "newer" babies with Down syndrome to come together several times a year at our Burlington office for informal support, networking and treats (See photo below). Our New Parent Socials have already expanded to include grandparents as well. Our next gathering is Feb. 9. See the flyer here.
Support for Brothers & Sisters
MDSC programming for brothers and sisters of people with Down syndrome is expanding in 2013. On Feb. 10, we will host our first-ever support group activity exclusively for siblings from 11 to 18. The bowling and pizza event is being run by our Brother/Sister Facilitator Sam Stark, sister of Chris Stark, a self-advocate and member of our Advocates in Motion program. (See the flyer for that event here.) Sam also runs the Brothers & Sisters track of our Annual Conference in March. Read more about our Brothers & Sister program here.
Supports for Fathers and Grandparents
Our Dads Appreciating Down Syndrome (D.A.D.S.) affiliate has begun holding meetings around the state to provide support for fathers throughout the Commonwealth. The next meeting will be Wednesday, Feb. 20 at the Beacon Grille in Woburn with special guest Dr. Brian Skotko. See here for complete details. We also continue to support grandparents with our Grandparents Group.
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Expanding Our Outreach
Meeting our members' needs is central to our mission. However, in order to truly achieve acceptance and inclusion of people with Down syndrome we also must reach beyond our community. That's why we are putting so much effort into outreach to the general public, but also to those professionals who work directly with our members in a critical way -- educators and health care providers in particular.
Reaching the Public
Much of what we do can only be successful if the general public understands what having Down syndrome truly means. That's why our Board of Directors last year directed us to make "Public Awareness" even greater priority. In response, we are expanding our public awareness initiatives, including launching a new Buddy Walk in Central Mass. in the fall and making plans to develop a comprehensive public relations strategic plan.
Reaching Educators
The MDSC's Education Task Force is putting the finishing touches on a comprehensive Educator's Manual. "Meaningful Inclusion for Students with Down Syndrome" has been three years in the making and promises to an invaluable resource for educators looking to apply best practices for including students with Down syndrome in regular education.
Reaching Health Care Professionals
In 2012, the MDSC formed a partnership with The Arc of Massachusetts to support and participate in Operation House Call, which has taught disability awareness to medical students in Massachusetts for more than 20 years. Through OHC, medical students meet with people with disabilities and their families first-hand in a variety of settings - seminars, home visits and clinical visits. We continue to reach health care professionals through our hosting of Grand Rounds, where Dr. Brian Skotko shares leading-edge information with hospitals and doctor groups on a variety of topics related to Down syndrome.
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Our Expanding Influence
The MDSC is a Massachusetts-based organization, but our reach has been increasingly broad. We have programs that are being recognized as national models and partnerships that have extended the MDSC's reach even beyond the U.S. This trend will continue in 2013.
Parent's First Call
Over the past year, Sarah Cullen, our Family Support Director has visited organizations in New Orleans, Connecticut, Vermont, North Carolina and Pennsylvania to share her expertise on the basics and intricacies of building something like our signature Parents' First Call Program. (Learn more about First Call here). Next month, she will present on the subject at the Down Syndrome Affiliates in Action Annual Leadership Conference in Cincinnati. We consider First Call a treasure, and clearly, many other around the country agree.
Prenatal Legislation
Having shepherded the Prenatal Testing bill into law, the MDSC has acquired knowledge that is invaluable to Down syndrome organizations in other states. In September, I was honored to partner with DSAIA and the National Down Syndrome Society to co-host a webinar, "How You Can Help Pass a Down Syndrome Prenatal Testing Information Law in Your State." I was joined by MDSC Advocacy Specialist John Anton, as well as Sara Weir and Madeleine Will of NDSS. See that webinar here. Sara and I will be presenting a similar session next month at the DSAIA Conference.
Big in Japan
Also on the prenatal testing front, we recently had a visit from Makiko Tatebayashi, a health writer at the Yomiuri Shimbun, the largest newspaper in the world (with a circulation of 13.5 million)! The prenatal tests will made available in Japan in 2013, and Makiko will be reporting on the MDSC's pro-information stance and how we helped pass prenatal legislation that provides parents with critical information.
Northeast Down Syndrome Education Conference
We were thrilled at the end of last year to collaborate with Down Syndrome Education International for our first-ever Northeast Down Syndrome Education Conference. More than 400 participants from from 25 states and 6 countries attended to learn from the international leaders in Down syndrome education. If you didn't make it, the conference was filmed in its entirety and will be made available to the public for a small fee.
Sharing Our Expertise
In addition to myself and Sarah Cullen, two other members of our team will speak next month at the DSAIA Conference in Cincinnati. Board Chair Louise Borke and I will present "Transitioning Your DS Parent Support Organization from a Mom & Pop Shop to a Significant, Professional, Effective Organization." Strategic Online Communications Director Joshua Komyerov will present "Credibility & Buzz: How to Build Your Non-Profit Brand."
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Final Thought: Making a Difference on Capitol Hill
Finally, I want to share some news about how one person is making a difference by packing his bags for the nation's capitol, and how you can do the same (though yours would be a smaller bag).
Mr. Anton Goes to Washington
I am thrilled to announce that MDSC Advocacy Specialist John Anton will be heading to Washington D.C. early next month where he will live out a lifelong dream, advocating for disability policy at the highest level of government. John will intern for Congresswoman Cathy McMorris Rodgers of Washington, a rising star in national politics. Now in her second term, McMorris Rodgers is Chair of the House Republican Conference and co-chair of the Congressional Down Syndrome Congress. Her 5-year-old son, Cole, has Down syndrome. (Above, John is meeting with State Rep. David Linsky. Photo by Reed Young of TIME Magazine).
During his time in D.C, the MDSC will provide John with funding as our first Allen C. Crocker Self-Advocate Intern. The internship was established after Dr. Crocker's passing in 2011 in honor of his steadfast commitment to advancing self-determination for individuals with Down syndrome. Crocker Interns will gain valuable work experience and develop leadership skills while advancing the shared mission of the MDSC and Dr. Crocker. Congratulations John!
Mr. or Ms. insert your name here Goes to Washington
In February, myself, members of our Legislative Advocacy Task Force and others from the MDSC family will participate in the Buddy Walk on Washington, a two-day advocacy event that brings together hundreds of people from the Down syndrome community around the country to advance education, research, healthcare and employment opportunities. While there, we will meet with each member of the Massachusetts Congressional delegation or their staff. (One of our top priorities will be securing the support of new members for the ABLE Act).
We want YOU to join us! The bigger our coalition, the more influential we will be. No advocacy experience required. (In fact, if you consider yourself just an "average voter," that's perfect.) All you need is passion about government's role in ensuring that people with Down syndrome and their families have the supports they need. Write to us at timetospeakout@mdsc.org if you're interested or with any questions.
Again, thank you for your ongoing support for the MDSC and the Down syndrome community. We will be working on behalf of you and your loved ones throughout the year.
Sincerely,
Maureen Gallagher, Executive Director
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P.S. - I look forward to seeing your March 23 at our 29th Annual Conference. Once again, we will welcome renowned experts from around the country for dozens of sessions and celebrate our collective accomplishments at our Annual Awards luncheon. Registration will open at the end of this month.
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