Massachusetts Down Syndrome Congress E-Newsletter

New prenatal testing, which will make it possible for expectant couples to receive a simple blood test during the first trimester of pregnancy to detect a diagnosis of Down syndrome, will soon be available.The MDSC needs to be prepared more than ever before to provide up-to-date accurate information and resources to expectant couples and to the medical professionals who advise them.

MDSC is one of the leading organizations in the country preparing for this test by strengthening the prenatal services of our First Call program and by reaching out proactively to medical providers to equip them with up-to-date accurate information about Down syndrome. Last year alone, the MDSC provided support services to 130 families through our First Call program of whom 15% received the diagnosis prenatally. More than 175 health care providers participated in trainings that we offered.

The MDSC wants to ensure that expectant couples receive the most up-to-date information about Down syndrome available along with balanced information that portrays what life is like living with Down syndrome. We are now disseminating a new booklet "Understanding A Down Syndrome Diagnosis" that was developed by Lettercase and reviewed and approved by both the medical and the Down syndrome communities on a national level. It is considered the gold standard of information to share with expectant couples.

With the support and leadership of our Honorary Board member, Rep. Tom Sannicandro, we have filed our first MDSC piece of legislation, "An Act relative to Down syndrome genetic test results." This new legislation, if passed, will require the MA Department of Public Health to "make available to any person who renders prenatal care, postnatal care or genetic counseling of parents who receive a prenatal or postnatal diagnosis of Down syndrome... up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with Down syndrome that has been reviewed by medical experts and national Down syndrome organizations."

Earlier this week, NPR talk radio asked Dr. Brian Skotko and I to discuss our concerns about the new blood test with Wendy Mariner, an ethicist and professor of health law, at Boston University School of Public Health. Click the link below to listen to the show.

http://radioboston.wbur.org/2011/01/31/down-syndrome-test.

No doubt, this is the beginning of a national discussion about how the advances in prenatal testing will impact the difficult decisions expectant couples will face in the future. It is critical for us to work together to provide resources for these expectant couples and to give them an opportunity to learn about how people with Down syndrome can lead meaningful lives and contribute to our community in so many positive ways.

Warm Regards,

Maureen Gallagher

Executive Director

P.S. If you would like more information about the MDSC's Parents' First Call program, please contact Sarah Cullen, Family Support Director, at 1-800-664-MDSC.

Senator Scott Brown Joins the MDSC

Invitation to Serve on Honorary Board of Directors Accepted

"The MDSC is delighted to welcome Senator Scott Brown to our Honorary Board. Having our senator serve in this capacity underscores the prominent role that our organization plays in the lives of so many citizens in Massachusetts," states Brian Skotko, M.D., Board Chair.

The Honorary Board serves in an advisory capacity to the organization's regular Board of Directors and helps the MDSC expand its capabilities and strategic goals.

Senator Brown joins 23 other honorary board members who will provide support and assistance in expanding current MDSC programs and services and introducing new ones that will impact over 5,000 families who have a family member with Down syndrome.

We continually strive to expand and diversify our governance

and leadership, which will enable our organization to continue to be at the forefront in providing parents, educators, people with Down syndrome, health care professionals, and the

community-at-large with accurate information, networking opportunities, and advocacy for and about Down syndrome across the state of Massachusetts and beyond as we work with our national partners.

"I'm looking forward to meeting with Senator Brown during the Buddy Walk on Washington. There will be hundreds of people from the Down syndrome community all across the nation in Washington D.C. next week on February 7th and 8th to promote awareness of issues affecting people with Down syndrome and to advocate for legislation that will enhance their lives. We are very fortunate to have Senator Brown as a champion for our community," says Maureen Gallagher, Executive Director.

The MDSC will continue to work with Senator Brown and other legislators to ensure that all people with Down syndrome are valued, included, and given the opportunities to lead fulfilling lives in the community.

Scott Brown and John AntonBW

Sen. Brown and John Anton, NDSS Self-Advocate of the Year, 2010 Buddy Walk

Colleen Driscoll Joins the MDSC

MDSC's Newest Employee

We are thrilled to have Colleen Driscoll join the MDSC

management team as the new Teen and Young Adult Coordinator. She got off to a busy start assisting with the Educators Forum her first day on the job and then at the

Hockey Game shortly thereafter, giving her the opportunity to meet many people and families connected to the MDSC.

Colleen comes to us fresh out of Lesley University where she graduated last May with a Master's degree in Education. Her art and

education background, energy, and strong skill set are sure

to bring the AIM program to the next level.

"I am excited to bring my creativity, program planning, and compassion to the table to expand AIM's reach as well as to provide opportunities for young adults beyond the AIM program," says Colleen.

Colleen will work alongside Nadine Briggs, AIM Parent

Coordinator, Leigh Ann Pond, AIM Program Facilitator, and

the many other AIM program volunteers this year.

To contact Colleen about your AIM-related ideas or questions,

you can contact her at cdriscoll@mdsc.org.

27th Annual Conference "My Great Story"

Registration Now Open

We are gearing up for our 27th Annual Conference "My Great Story" on Saturday, March 19th at the DCU Center in Worcester, MA and we hope to see you all there.

There will be sessions for new families, families of individuals with Down syndrome across the lifespan, as well Annual Conference Check In as workshops for young adults, brothers and sisters, and educators. You'll have the opportunity to learn from national and local experts including Brian Skotko, Jose Florez, Allen Crocker, Emily Davidson, Kerim Munir, Julie Moran, Karen Erickson, David Koppenhaver, Richard Villa, Leslie Hirsch Walker, Chris Rose, Beverly Beckham and many more.

Families will also have the chance to network, share stories, ask question Self Advocates at Conference s, and collaborate with one another during our networking session. During the Awards Luncheon we will celebrate our community's many accomplishments and honor the remarkable individuals that have worked so hard to improve the lives people with Down syndrome.

To REGISTER, visit http://mdsc.kintera.org/mygreatstory

If you have questions about the conference please contact Rosalie Forster, MDSC Education Resource Specialist and Conference Coordinator, at rforster@mdsc.org.

"My Great Story"

The MDSC is integrating the National Down Syndrome Society's (NDSS) My Great Story public awareness campaign into this year's conference theme because your stories inspire us every day!

My Great Story seeks to ignite a new way of thinking about people with Down syndrome by showcasing and collecting inspirational stories told by people with Down syndrome, their family members, friends, colleagues, employers, and many others.

Self-Advocate Corner

Shannon Driscoll

On October 1, 1979, the Pope came to Boston and so did I. My name is Shannon Driscoll and I turned 31 years old on October 1, 2010. I am an adult who was born with Down syndrome. I am the middle child. I have an older sister, Danielle, and a younger sister, Jacqui. Neither of my sisters live at home. This past July, I was the maid of honor in my sister Jacqui's wedding.

My parents tell me that I had early intervention when I was a baby. I went to Tuft's New England Medical Center to the genetics clinic. I went to a program once a month at Children's Hospital Boston. I went to a speech group in Dorchester and went to school when I was 3 years old. I did not have serious medical problems when I was born, but went to a lot more doctors than my two sisters. I have had many sets of tubes in my ears. I am on medicine for a thyroid problem. I was diagnosed with sleep apnea last year, so I have to wear a sleep mask every night. It is not as bad as I thought it would be and I feel more awake and energetic each morning. Basically, I am very healthy. I still go to my pediatrician, Dr. Sisson, when I am sick because my parents and I really like her.

I lived in South Boston until I was 5 years old and have been in Braintree ever since. I went to Boston Public Schools, St. Coletta Day School, and then the Braintree Public Schools. In addition to learning reading and math in elementary school, I starred in many plays such as Peter Pan, Cinderella, The Wizard of Oz, and Mary Poppins. I always loved school and I still love to learn new things. I take reading, writing, and math at Massasoit Community College one night a week. I never get tired of learning. I have six college credits in child care and I would love to get my associate's degree. Braintree High School was my favorite school. I was in the Project Prove Program for students with special needs and took other classes such as English, Spanish, Italian and Drama. I made many new friends in Project Prove and outside of my class.I am glad my friends accepted me for who I am.

Now that I am out of school, I work at Stop and Shop in Braintree. I was hired as a bagger but then promoted to cashier. I love cashiering but I still help bagging when they need me. I get paid holiday pay, vacations, and raises every year.I am in the union at Stop and Shop. I also attend South Shore Industries in Braintree which is a workshop. I go there when I am not working because I get to see all of my friends.

I am involved in many activities. I belong to the Arc of the South Shore and go on outings one Saturday evening a month. We go to plays, restaurants in the North End, sports events and many other places. I go to Friendship Club in Norwell, where we make dinner, play board games, and just socialize with one another. I also bowl once a week, and play basketball as well as softball. I swim for the Special Olympics on a team known as the SHARCS. I also volunteer on Saturdays in a program called Super Saturdays, which is for young children in Braintree who have special needs. I volunteer at Gillette Stadium to raise money for our activities. For all you football fans please come to the Barbecue Blitz in Section 140 and come to my register. I am usually very busy but I like it this way. I am known as a social butterfly. I love to write when I am home in my bedroom. I also use the computer every day. I email my friends and I belong to Facebook. I recently bought myself a laptop with money I have saved. My mother is happy because now I am not always on her computer.

I have many friends. Three of my girlfriends and I take turns having sleepovers at each of our homes. We watch movies, have "girl time", and just love being together. I also have a best friend.

I am going on a cruise to the Bahamas with my friends in February. This trip is sponsored by Friendship Home in Norwell.

There are many things that I would like to do in the future. I have always loved to write, especially poetry, letters, and in my journals. I really enjoy photography. I also love public speaking and taking care of animals, especially dogs. My favorite dog is my sister's English bulldog named Hazel. Someday in the future I would like to take care of animals and become a veterinarian or a veterinarian's assistant. I would also love to be a public speaker. Since I love to write I would love to write articles or submit my poetry to either a magazine or to a newspaper.

I feel I am entitled to pursue my dreams like my two sisters did. It is harder for me, but so far I have achieved what others have achieved. Things just take me longer.

I have a great family who love and support me, but at 31 years old, I don't like being the only one at home with my parents. I would love to live with my friends who have common interests but for right now, that is not an option because there is no funding for me to be able to live on my own.

Right now, I am engaged to my fiancé, Michael Goodhue. Someday we would like to get married, but this is going to be difficult because I still need to pursue a career I enjoy and I still do not have housing.

Even though I have Down Syndrome, I never give up on my dreams. I have a great life. I love my life.

Thank You.

AIM Holiday Party

DJ Sean's rockin' tunes kicked the holiday spirit into gear! The limbo pole made an appearance mid-party, and not a seat in the house was filled as everyone came to the floor to take part in the fun. Many self-advocates also took a turn on stage to help DJ Sean emcee the celebration.

Those in attendance had the opportunity to sit amidst a winter wonderland scene for a solo or group portrait taken by AIM parent, John Crookes.The portraits were inserted into framed photo cards and available to take home at the end of the evening. What a treat!

Party goers feasted on pizza, including a gluten-free option, and ice cream, thanks to Mary Anne Sannicandro's fantastic ice cream bar spread!

As in past years, the holiday party carried on the tradition of givi AIM Holiday 2010 Girls ng to others.The evening included an activity for those needing a moment to catch their breath. Participants had the chance to make a birthday card for a homeless child in need of some cheer. All cards made that evening were delivered to Birthday Wishes, Inc. in Newton, a company that provides birthday parties for children whose parents do not have the means to celebrate their child's birthday.

In addition, all attendees brought an unwrapped toy or food item resulting in three overflowing cartloads that were donated to the Ashland Food Pantry! The generosity our self-advocate community shows is something in which everyone should take great pride!

As the evening came to a close, self-advocates picked up a goody bag on their way out including a personalized card, gluten-free cookie and recipe, and a CD with holiday music!

Thank you to all of the attendees, families, and volunteers for your support of this great event! AIM looks forward to continuing to provide social opportunities like this and hopes you will join in on the fun!

Over 45 self-advocates from AIM and the Teen Inclusion Club, led by Mary Anne Sannicandro, gathered together on December 5^thfor the AIM AIM Holiday Dancy Guys

Holiday Party. The historic Sherborn Community Center once again opened its doors, providing the Great Hall for our teen and young adult dance and the School Room for a parent and caretaker Potluck.

A New Meaning to Defining "Dignity"

How One Act Leads to Change

We encourage individuals to express their thoughts, choices, and Trent and Megan Briggs feelings about issues that are important to them. An excellent example of this was set by 9 year old, Trent Briggs. Trent's sister, Megan, has Down syndrome. Curious about his sister's diagnosis, Trent looked up the definition of Down syndrome in the Scholastic Children's Dictionary at school one day. He discovered that Scholastic's definition was "a person who is retarded."

Trent knew the definition was offensive, so he decided to take action. Following is the letter he sent to Scholastic with the company's response:

Dear Scholastic,

In your Scholastic Children's Dictionary book on page 160, the word "retarded" is used to describe Down syndrome. I have a sister with Down syndrome and I find that word very offensive. I suggest that you use developmental disability or intellectual disability instead. A website you could visit is www.r-word.org. The word is considered hate speech by the special needs community. Please change your dictionary. Thank you.

Sincerely, Trent Briggs, age 9

RESPONSE:

Dear Trent,

Thank you for contacting us about the definition of the word "retarded" in the Scholastic Children's Dictionary. I have

forwarded your comments on tothe editor who wanted me to let you know that they are in the process of revising the Dictionary and will make sure that that definition is changed when the Dictionary is reprinted. We truly appreciate you sharing your perspective with us and giving us anopportunity to respond to

your concerns. Have a great school year! And thanks for

writing to us.

-The Scholastic Staff

The Westford, MA public school system, where Trent is a student, designated Wednesday, March 3, 2010 as "Stop the R Word Day" to raise awareness for individuals with disabilities. By stopping

the "R-word," society can reach a major milestone in silencing

hate speech.

Thanks to Seven Hills Foundation for permitting the reprint of this article featured in their Horizons, Newsletter, Winter 2010 Issue.

Providing For A Loved One

Contributor, Robert Krause, Financial Professional

If you're caring for someone with Down syndrome, you know how important it is to prepare for the future and the possibility that, one day, you may no longer be able to provide the care your loved one needs.

Even when other family members, such as siblings, are willing to assume the duties of caregiver, it is still important to provide for the management of assets. A testamentary or Living Trust are examples of vehicles that can be considered for this purpose. Such a trust, sometimes called a "Special Needs Trust," should:

Appoint someone to take care of this person's property and money.
Select a guardian for the individual.
Set out instructions on how he/she is to be cared for
Ensure, to the extent possible, that he/she will not lose payments or benefits from government agencies.
Integrate the trust with the remainder of the parent's estate plan to ensure equity amon all family members.

Not withstanding the time value of money, survivorship life insurance on both parents could provide a cost-efficient means of funding this trust upon their death. Disability income insurance on a working parent is also something to be considered.

At one time or another during his/her lifetime a person with special needs could receive benefits from Supplemental Security Income (SSI), Medicare, and/or Medicaid. Keep in mind though, that eligibility for government assistance can be negatively affected by the disabled person's assets. For example, to be eligible for the SSI benefit, a single disabled person cannot own more than $2,000 in cash and liquid assets. The objective of a Special Needs Trust is to supplement the child's inheritance, not replace these government programs.

Planning for the future of your loved one with Down syndrome can be aided by a licensed financial services professional can help you determine what approach may best serve your families needs.

Provided courtesy of Prudential. For more information, contact Robert Krause, CLU , a Financial Professional with The Prudential Insurance Company of America's Greater New England agency located in Wakefield, MA. Robert Krause's private office is located in Rockport, MA. He can be reached at robert.krause@prudential.com and (978)546-5135.

Become an MDSC Member!

New families are encouraged to contact Sarah Cullen, Family Support Director, to learn more about our Parents' First Call program. Please do not hesitate to call anytime at 1-800-664-MDSC for advice, resources, or support. All new families receive a complimentary one-year MDSC membership as well as a new parent packet and two books.

GIVE to the MDSC

Thank you for your support!

www.mdsc.org

1-800-664-MDSC

New Office Address:

Massachusetts Down Syndrome Congress

20 Burlington Mall Road - #261

Burlington, MA 01803