|
|
| ***** UpSide Weekly No. 43***** |
Do you know an individual who can help govern the MDSC in the areas of policy, fundraising, financial oversight and strategic planning?
Nominate them for our Board of Directors by the Feb. 1 deadline.
We are looking for committed individuals willing to serve a 3-year term. The commitment of MDSC Board Members has been the catalyst to the legacy of the MDSC's 30 years. While all nominations are welcomed, we are particularly looking for the following:
** a public relations, c
ommunications or marketing background with leadership experience in the corporate sector.
** expertise in Government Affairs
** executive leadership and business skills
** entrepreneurial background skills
** someone with contacts in the community who can bring those connections to the board, whether financial or other.
Fill out our nomination form here.
|
We have an incredible crew of runners already signed on to run the 2016 Boston Marathon for Team MDSC - Angel Boisvert, Andrew Thompson (pictured above), Holly Pennell, Tracy Constantino, Stephanie Chiles and Arie Bram.
Go here to learn more about them and donate to their efforts.
We are still looking for qualified runners to join Team MDSC.
Benefits of joining the team include: MDSC running singlet, transportation to race starting line, fundraising and running training tips, included in all CharityTeams weekly training runs and themed long-runs with thousands of other charity runners, invitation to MDSC pre-race event, invitation to CharityTeams pre-race event, communication with CharityTeams founder and coach Susan Hurley.
Also, if you're running another major race or participating in an athletic event, please consider doing so on behalf of the MDSC.
For more information, please e-mail Interim Development Director Reaghan Bik at [email protected].
|
IRS Relaxes Rules for New ABLE Accounts
We are happy to share that the IRS is easing up on its rules for new ABLE accounts allowing people with disabilities to save without jeopardizing their government benefits.
The interim guidance issued by the IRS will make it easier for state administrators to establish and administer ABLE programs in an expedient and efficient manner,
said Heather Sachs, vice president of advocacy and public policy at the National Down Syndrome Society.
In September, MDSC Executive Director Maureen Gallagher submitted comments on the newly released IRS regulations for the Achieving a Better Life Experience (ABLE) Act. The comments advocate for provisions that enhance the flexibility of ABLE accounts for self-advocates and their families. Passed late last year after a decade of lobbying, the ABLE Act promises that our families will be able to set aside money that can be used tax-free for a loved one's expenses without risking the loss of government benefits. It is estimated that about 5.8 million individuals - including all people with Down syndrome - and their families could benefit from the accounts.
As it stands, people with disabilities cannot qualify for Medicaid if they have more than $2,000 in assets. With ABLE accounts, they can save up to $100,000. But Congress, concerned about lost tax revenue, has set a savings limit of $14,000 per year and included a "clawback," requiring that any money remaining in the accounts after the death of a disabled person be subject to reclamation by Medicaid.
Reuters News Wire recently ran a story about ABLE accounts that quoted financial planner John Nadworny, a former MDSC Board member. The "clawback", Nadworny said, is a fairly significant downside for many families. Still, ABLE accounts will be a boon for people with disabilities not only because of how families can save, but also because the conversation itself "educates people that they have to save," Nadworny said.
The Reuters story points out why ABLE accounts are not already being opened across country. "Families have to wait for their states to act, since the law allows them to open just one account per beneficiary and only in the state where the disabled person resides." While the establishment of ABLE Accounts has been compared to tax-free college savings plans, this points to a major difference - college savings plans don't limit where or how many accounts can be opened.
Complicating the situation in Massachusetts is that we had enacted our own version of the ABLE Act before the federal law passed. The MDSC is working with
State Senator Barbara L'Italien to
expand and revise ABLE Act language to
ensure that the Massachusetts version of is complementary to the federal law.
"The MDSC will continue to work with others to ensure that ABLE accounts have all the necessary provisions to become flexible savings instruments for self-advocates and their families," Gallagher said in her comments.
MDSC testifies for top bills on state platform
The MDSC was busy on Beacon Hill this fall, testifying on behalf of both of the priority bills on our State Legislative Platform for the 189th session (2015-2016) of the Massachusetts General Court.
MDSC Executive Director Maureen Gallagher, along with our bill sponsor Representative Jim Cantwell, testified at the State House for bill H. 3271, An Act concerning nondiscrimination in organ transplantation. The bill is intended to prevent discrimination against anyone with an intellectual or developmental disability in need of an organ transplant. We want to thank all the advocacy groups who turned out to support the bill including the Massachusetts Developmental Disabilities Council, the Boston Center for Independent Living, and Disability Policy Consortium, as well as MDSC parent, Carrie Howland who gave compelling testimony in favor of the legislation.
Later in the same week, MDSC representatives testified for our other priority bill, H.1064/S. 672 - An Act Creating Higher Education Opportunities for Students with Intellectual Disabilities, Autism Spectrum Disorders, and other Developmental Disabilities. Mo Blazejewski, MDSC Education Director; Julie Messina, MDSC Government Affairs Committee Member and President of the 3-21 Foundation; and MDSC Self-Advocate Advisory Council member Kate Bartlett all testified. This legislation addresses some of the major findings and recommendations of the Joint Task Force on Higher Education for Students with intellectual disabilities and ASD. Sponsored by Rep. Tom Sannicandro and Sen. Barbara L'Italien, the bill would bolster Massachusetts' Inclusive Concurrent Enrollment Initiative (ICEI) to give 18-to 22-year-old students with disabilities higher education opportunities in an inclusive college setting with necessary services and supports -
Our overall platform, developed in consultation with our Government Affairs Committee, includes wide-ranging policy items are critical to providing support for people with Down syndrome in Massachusetts and will pay lifelong dividends.
If you would like to join our advocacy efforts, please contact us at [email protected].
|
SAAC Homecoming Dance and Karaoke Night
On November 14, 2015, the MDSC Self-Advocate Advisory Council (SAAC) hosted a Homecoming Dance for adults with Down syndrome, ages 21 and up, and their friends. The event continues the MDSC's collaboration with the Best Buddies Program at Bentley University. Everyone had a blast!
On Feb. 27, the SAAC, which plans and organizes events for adults with Down syndrome, will host its 3rd Annual
Karaoke Night at Bentley University! The event is open to all adults 21 and older with Down syndrome. Learn more about the SAAC here.
Advocates in Motion Hangouts and NEW Saturday Night Socials
Our AIM: Teen and Young Adult Program continues to explore its curriculum, "Presenting Myself to the World," which focusses on discussing their abilities and potential career paths, creating digital resumes, preparing for interviews and dressing for success.
AIM Hangouts take place one Sunday afternoon each month at the YMCA in Newton. While youth meet for fun games and learning activities, parents have an opportunity to network and learn from an expert speaker in the field of transition. AIM Parent meetings are held in a different room of the YMCA and are coordinated by our wonderful AIM Parent Facilitator Cathy Polewarczyk.
New in 2016 are our
AIM Saturday Night Socials! These events will be held at the Boys & Girls Club in Waltham, and you can count on music, dancing, fun and the chance to make new friends!
For more information on any of our Teen & Adult Programs contact Colleen Endres or Kristen Tenglin at [email protected].
|
Clinical Trials at Children's Hospital and MassGeneral Hospital
Boston Children's Hospital and MassGeneral Hospital are now recruiting children 6 to 11 years old with Down syndrome for a
clinical trial sponsored by Roche Pharmaceuticals.
The study
looks at the safety and potential effectiveness of an investigational medication that may improve learning, memory and performance of daily activities in children with Down syndrome.
- For more information on the Boston Children's Hospital study, go here.
- For more information on the MassGeneral Hospital study go here.
UMass Medical Weight Loss Study
A research study called Health U. is being conducted at the UMass Medical School/Eunice Kennedy Shriver Center.
Health U. is a weight loss research study for healthy teens and young adults ages 14-22 who are overweight and have an intellectual disability. Eligible participants will participate in weekly group sessions and receive individual counseling that will focus on healthy eating and increasing physical activity in ways that are fun and achievable. Parents receive training on supportive behavioral techniques to encourage their son/daughter to meet nutrition and physical activity goals.
The Shriver Center has a four decade history of pioneering research, education, and service for people with intellectual disabilities and their families. The Center seeks to advance local, national, and international efforts to improve the quality of life of people with disabilities.
Health U. is a free and voluntary research study funded by the National Institute of Health (NIH) through the Shriver Center in Boston and at UMass Medical School. Qualified participants may be eligible for compensation.
The MDSC is dedicated to ensuring that all members have information about and access to the latest research opportunities.
Through working directly with researchers and scientists, the MDSC Medical and Scientific Advisory Council selects a number of studies each year that will be made available for the MDSC members to participate in if they so choose.
Each research proposal received is carefully reviewed for content, ethics, and feasibility before forwarding the information onto our members. The MDSC is sensitive to the confidential nature of our membership information and at no time does the MDSC sell or share member information with researchers. The MDSC will not be informed by researchers about who agrees to participate in their research.
|
|
We were privileged to hold our first ever conference geared specifically for adult self advocates with Down syndrome, their loved ones and providers on Oct. 24. The event, organized in collaboration with the Mass General Hospital's Down Syndrome Program, took place on MGH's Boston campus.
Titled "Growing up with Down Syndrome: Living a Longer, Healthier and Meaningful Life," the conference included plenary and breakout sessions on a range of topics including "Keeping Adults with Down Syndrome Healthy", "Empowering Ourselves for a Healthy Future: How to Stay Healthy by Eating Well and Being Active", "Nothing About Us Without Us", "Best Resources from Experienced Parents and Family Members", "Best Practices and Resources for Direct Service Providers", and "Growing Old Gracefully - Addressing Common Aging Concerns and Alzheimer's Issues."
It was wonderful to see so many of our longtime families coming together to learn about issues related directly to adults with Down syndrome and to celebrate these incredible members our community! Thanks to photographer John Crookes for volunteering his talents to help us capture so many warm moments.
|
 |
It was a thrill to be back on the ice on November 22 for our 11th Annual Hockey Benefit Game featuring the Boston Bruins Alumni and sponsored by our friends at EchoStor Technologies. More than
400 people came together to watch the Bruins legends take on the ragtag MDSC All Stars.
Having lost last year, the Bruins came out firing and mercilessly reestablished their dominance. But as has been said, our event is "so much more than a hockey game!" For over a decade,the game has celebrated our Down syndrome community, and that happened in countless ways at the New England Sports Center.
People with Down syndrome, young and old, were involved in all aspects of the day. Dozens of fans donned skates for the family Free Skate with the Bruins alum (Rick "Nifty" Middleton is pictured above giving an assist). Self advocates Sara Crookes, Matthew Cullen, James Hintlian, Daniel Kinchla, Colleen MacPhee, Cara Papagni, Amy Polewarcyzk, Steve Roller and Leah Toronto sang a wonderful rendition of the national anthem. Aidan Downey, (whose father Rich is a perennial All Star player) dropped the ceremonial puck at center ice to start the game. And for the third consecutive year, MDSC Self Advocate Advisory Council Member John Dunleavy served as honorary Bruins Alumni coach.
The Bruins Alumni couldn't have been more gracious, taking time during their brief halftime break to meet, greet and sign autographs for fans.
This year, we were proud to recognize and give awards to several individuals who have been integral to making this game a success over the years.
- Bruins great Terry O'Reilly has been a mainstay of the event for years, not only during the game, but during the pre-game activities as well, where he's made a point to connect with families and our members with Down syndrome. For his ongoing dedication to our cause, Middleton, MDSC Honorary Board member Dave Kelleher, Hockey chair Scott Trinque and his daughter Zoe presented O'Reilly with the MDSC's Helping Hands Award.
- Once again this year, Joey Campagna, skating in honor of his brother Danny, was our top fundraiser. Joey began playing in our game when he was just 11 years old, and he's now a 9-year veteran! Year after year, he is a powerhouse in spreading the word and raising critical funds to support MDSC programs and services. This year alone, he brought in $9,000 and a total of more than $50,000!
- Two MDSC All-Star Players, Dr. Harlow LaBarge and Dr. Errol Mortimer, were recognized for their leadership and support of the MDSC mission, and for taking time out of their busy schedules every year to play in our benefit game. Drs. LaBarge and Mortimer both provide exceptional medical connections through their work that directly help our loved ones with Down syndrome. They also serve in leadership roles on the MDSC Honorary Board and the MDSC Medical and Scientific Advisory Council.
Special thanks to our other sponsors: The Bustonian, Flank Restaurant and JK Boston Limo.
Finally, the event would not have been possible without the incredible leadership and support of first time event chair Scott Trinque and his family, including his son Theo, who has Down syndrome.
|
The 11th Annual Educators Forum, this year was on the theme of "We Are All in This Together - Collaborating to Create Inclusive Schools," f
eatured dozens of workshops on topics designed to provide teachers with tools and ideas to facilitate collaboration and planning for students with Intellectual and Developmental Disabilities.
Dr. Zachary Rossetti (below) of Boston University offered a keynote that was equal parts personal and empirical,
"Friendship: The Final Frontier of Inclusive Education." A showing of the Your Next Star centerpiece video gave participants a sense of the potential lifelong positive impacts of their work on students.
But without a doubt, the highlight of day was
our young keynote speakers from Framingham High School who proved to be the embodiment of what an inclusive educational environment is all about. Between cheers, tears and laughter, the room fell silent for long periods as
Jordan Caira and her fellow graduates Sarah Rosenthal, Eliza Meltzer and Laura Green (pictured above) told of their journey in a keynote titled,
"True Friends Don't Count Chromosomes - A Story of Friendship and Inclusion."
|
Alyssa Campbell of North Shore Bank with MDSC Allen Crocker interns
Ned Reichenbach and Felicia Patti, and Executive Director Maureen Gallagher
|
Special thanks to the dozens of members and supporters who have used our
Community Fundraising Program to support the MDSC and our programs. See below for several recent examples of MDSCers making a difference by partnering with local companies they're connected to. We can't thank these individuals and companies enough for what they're doing to support individuals with Down syndrome and their families!
North Shore Bank
Every Friday,
North Shore Bank employees celebrate "Jeans Day" to support a good cause. Thanks to
Alyssa Campbell, a teller in North Shore Bank's Cliftondale Square, Saugus branch, the good cause our Down syndrome community recently.
 In exchange for $5 each week, employees are permitted to wear jeans to work while the proceeds collected are pooled together for the month and then donated to an area charity that is recommended by the employees. North Shore representatives recently presented the MDSC with a check for $1,080 from the proceeds collected during September.
Alyssa's niece is 18-month-old Mia Campbell (right), who happens to have Down syndrome and whose parents Leah and Matt have been wonderful supporters of the MDSC since Mia was born. "The MDSC has helped my family so much. They are constantly there to advocate for my niece and others with Down syndrome." Campbell went to say, "My niece is a beautiful, happy, and healthy 16 month old who is absolutely thriving. We are grateful to all the employees at MDSC for everything they have done for us."
Buffalo Wild Wings
 To help fund his spot on the MDSC All Star team in our annual hockey benefit game with the Boston Bruins Alumni, Matthew Mattero and his family last month partnered with
Buffalo Wild Wings on a spicy community fundraiser!
For a day in mid-November, the BWW in Shrewsbury donated 20 percent of some purchases to the MDSC! Matthew, a student at St. John's High School, played in our 11th Annual game in honor of Liam Fitzgerald (right with a St. John's Banner), also known as the Fist Bump Kid. "Liam is an inspiration to me and to so many," Matthew said.
Shirley Fire Department
For the 6th August, the
Shirley Fire Department held its annual motorcycle ride to raise funds for causes that make a difference. This year, Hose company members voted to donate $1,000 to the MDSC! The idea was spearheaded by Brandon & Kristy Levesque, who are members of both the Fire Department and - after the birth of their beautiful daughter Karlee, who happens to have Down syndrome - the MDSC as well.
Last month, Allen Crocker Self Advocate Intern Felicia Patti and Teen & Adult Services Facilitator Kristen Tenglin, visited the Fire Department for the check presentation ceremony. As you can see Karlee, Felicia and Kristen had a wonderful time. Thanks to the Levesque family and Shirley Fire Department for their generosity.
Community Fundraisers
If you have an idea to involve your neighborhood, school, sports team or work, apply now to hold your community fundraiser - all you need is the desire to help, a fundraising idea you're passionate about, and a plan!
Corporate Giving/Grants
The MDSC has been very successful in obtaining grants and corporate donations through our members work at various companies who have community giving programs. You can help the MDSC connect to your employer, too. If you would like to help us raise awareness within your company about the many wonderful programs and services of the MDSC, please contact Reaghan Bik at
|
|
| |
| |
|
|
In August the Lowell Sun published a story, "A Girl's Future, A Mom's Dream," about MDSC member Jennifer Zeuli and her 3-year-old daughter Cordelia, who was adopted from China. The article ends with a quote from Jennifer. "People tell me she's so lucky. We're both lucky," Zeuli says. "She's an incredible kid and all she needed was half a chance." Before Jennifer and Cordelia sat down with the Sun, she shared Cordelia's (and her) amazing journey with the MDSC....
|
|
By Jennifer Zeuli
Photos above by Julie Malakie
It was the idea I'd been waiting my whole life to have.
I always wanted children, but at 40 it just hadn't happened. Then one day I read a short article which mentioned, in passing, how difficult it is to grow up with a special need in China, and it HIT me: I wanted to adopt a special needs child. I had been a high school English teacher for almost twenty years, and I'd worked with large numbers of kids with learning disabilities, intellectual disabilities, emotional difficulties, autism, you name it. I'd encountered a few kids with Down syndrome, including one exceptional young man who was my student for his junior and senior years in high school. All at once, I knew: I wanted to bring a baby with Down syndrome home with me.
I considered adopting domestically through the foster care system, but I felt drawn to China. Kids growing up in the US, even in foster care, have access to Western medicine and education. Disabled children in China have nothing. Through the recommendation of a friend, I found Wide Horizons For Children in Waltham, and their China Special Children program. The coordinator assured me that there were many, many young children with Down syndrome waiting for families, and in January of 2014 she matched me with a beautiful seventeen-month-old girl called Xin Yi. I named her Cordelia, and I began to wait.
My former student, John Dunleavey, is on the MDSC's Self Advocate Advisory Council, and his whole family is active in the MDSC. I contacted them when I was first considering adopting; his mom answered every single one of my questions, including the very painful and the very personal, and connected me with Sarah Cullen and the First Call program. I quickly received a welcome package and an invitation to attend MDSC's new parent breakout session at the annual convention in March. I met other parents whose babies helped me imagine what Cordelia might be like, and felt warmly welcomed by the whole community despite how different my story and my situation were from the others.
At the end of October, 2014, I flew to Jaingsu Province in China, and my whole world changed in an instant when Cordelia was finally placed in my arms. Expecting a toddler, I got a baby-at 26 months she weighed just sixteen pounds, and she was neither walking nor talking. She was breathtakingly gorgeous and absolutely terrified. For two days, she lay on her back and stared at the ceiling; I couldn't get her to smile or pick up a toy or even stay upright, and even though my case worker, on the phone each night, kept assuring me that it was normal for her to be so shut down, I was really anxious. Had the orphanage staff just left her in her crib? Had no one loved her?
 On the third day we visited the orphanage and my fears were laid to rest. She was
overjoyed
to see those people, and she laughed and crawled and played with toys. In her playroom, familiar to me from the periodic update photos the orphanage had sent while I waited, I found five other toddlers with Down syndrome-all of them sweet, wonderful kids, none of whom had adoption prospects. The nannies loved them and cared for them, and the orphanage director was utterly devoted to them, but if they stay in China none of them will ever have a family of their own, go to school, or even live outside of an institution. Happy as I was to see how beloved Cordelia was there, my heart ached for the babies I was leaving behind.
We flew home to the US on November 6, and about ten days later found ourselves at a beginning sign language workshop at MDSC. Cordelia, who had come to life after the orphanage visit, showed off the "more" sign I'd taught her in China.
It was becoming obvious, through MDSC events like this workshop and the new parent socials, as well as doctor visits and just daily life at home, that Cordelia was doing phenomenally well. She's a happy, resilient, socially engaged kid who just soaks up every new experience that comes her way. And MDSC has given us a whole network of supporters and admirers, connecting us with other parents and toddlers as well as with older kids and adults with amazing stories.
This year, I returned to the MDSC Annual Conference -without Cordelia, who's too active to make it through a day of seminars, but with both of my parents, who were excited to attend the grandparents' breakout session-and heard the keynote speakers, Naia Fairchild and her mother, Tierney, talk about navigating the public school system and their quest for a standard diploma. Despite her rough start, Cordelia's making impressive developmental gains; she's now walking (and into everything!) and has more than twenty signs. At the conference, I started to grasp just how high I can set my sights.
It's funny-I'm the single parent of a former orphan, and I've never felt more connected in my life. The staff at my adoption agency knocked themselves over to make my process go smoothly, and still respond enthusiastically to my periodic updates, as does the family coordinator at the grant foundation that helped so much with funding. We're in touch with Cordelia's orphanage, the Zhenjiang Social Welfare Institute, and they send the occasional note after viewing her website ("We happy progress grandmother!" one recent email exclaimed; I've told them I have a translation service but they insist on trying it themselves).
Cordelia has a whole battalion of day care staff and Early Intervention therapists who work tirelessly for her, not to mention the top-notch pediatricians and specialists we've encountered at Children's Hospital. And I feel so privileged to be part of the Down syndrome community.
The MDSC gave me a way to advocate for Cordelia even before she came home, a venue to talk to other parents about the myriad little issues that come up, even support in helping my own parents understand their granddaughter's needs and their role in her life. Down syndrome adoption is an amazing journey, and I'm still wrapping my head around just how big the family is that was ready and waiting for Cordelia to come home.
|
|
|
John has been a beloved member of the Boston Bruins front office for over 5 years now! He initially came to the organization when the Bruins partnered with The Achieve program at Winchester High to give a 12-week internship for 4 of their students, including John. They worked on travel training, job skills, etc. and at the end of the 12 weeks, the Bruins committed to hiring John for a permanent position. 
