Tuesday, December 13, 2011

Sorry I Have Been Away

It has been over a month since my last blog entry and it is not because there has been nothing to say, it's just that I have been busy and didn't know what to say. Today, I saw this photo and I knew that I had to share it with you because it reminds me that we all have gifts. As you hurry through this holiday season, I hope you carry with you this message-some gifts can't be bought, they are gifts from the heart.

Monday, October 31, 2011

New post on Zeh Lezeh (For One Another)

From time to time, I am a guest blogger for the Ruderman Family Foundation. Here is my entry on today's blog.
Guest Blogger: Jo Ann Simons, CEO, Cardinal Cushing Centers

I’ve been asking myself this question each time I read about cloud computing in the pages of the business section and have no idea what it means. But I knew I needed to solve the mystery when I was asked to participate this fall in a conference at the Coleman Institute at the University of Colorado. With the title “Implications of Cloud Computing for Residential Support and Service for People with Disabilities,” the gathering will bring together service providers, consumers and advocates, technologists, law and policy specialists.

What have I learned? Enough to know that the cloud is going to be a game-changer – indeed a universe-changer -- for people with disabilities. If we think the IPad was revolutionary (and I do believe it was), we’ve seen nothing yet.

Imagine, the cloud will mean that each person with a disability will have a unique identifier (stored in the cloud) so that every time the person accesses their mobile phone, PDA, notebook, laptop, netbook, computer or any device with a screen (Metro card ticket machines, ATM machines, etc), the interface will look the same because the user will be identified and the font, size, colors and layout will look the way that works best for them.

A visually impaired person will see the size and color that best suits them and the volume will be set just for them. A person with a cognitive disability will see the same screen layout each time they access technology.

And the cloud is coming closer every day. There’s already an international initiative, the Global Public Inclusive Infrastructure (GPII) that’s planning to inform the public and work with government regulators, to shape cloud policy. For example, they’re already shaping how people with disabilities will access all forms of technology in a way that will make sense to each and every user.

All this is just the beginning. As budget pressures continue to mount and in-person supports may be cut back, we must all find less labor-intensive ways to provide services. The cloud will go a long way in helping people with disabilities become more independent as they stay connected to what’s an increasingly virtual support system.

-- Jo Ann Simons

Tuesday, October 25, 2011

Brian Skotko Remembers Allen Crocker

I miss him so much already. While October 23, 2011, marked the end of Dr. Allen Crocker’s profound life, it triggered the official beginning of his timeless legacy. He was a lover and a healer, a poet and a dreamer, a fighter and a defender. He was our buddy, whether we knew him personally or not.

When I arrived in Boston for medical school, I was determined to know him. I had heard him speak at national conferences before, but this was my chance to really meet the legend in our Down syndrome movement. After my parents had dropped me off—and before all of my bags were unpacked—I walked to his office at Children’s Hospital Boston, but what I didn’t realize was that Allen would quickly become my mentor, my colleague, and, most preciously, my friend.

He taught me you get when you give. No sooner had I begun medical school, Allen was driving me to Board meetings for the Massachusetts Down Syndrome Congress. Me, a Board member? Allen showed me that while my classes at Harvard Medical School were important, richer lessons were to be found in this non-profit, parent-driven organization. For the past ten years, I have learned more from the families of the MDSC than I will ever be able to repay. As I sat by his bedside during some of his final days, Allen still asked me how the “boys and girls of the MDSC” were doing. He never believed that doctors should be stuck in hospitals.

He taught me to be unsatisfied. Our friends with Down syndrome deserved to have their mysteries unlocked, so Allen would push me to find the answers. I would arrive at his office regularly at 7:30 a.m., prompt, to share my far-flung ideas about projects that I was considering. Allen told me that I was not crazy. In fact, I was not crazy enough. He prompted my research trip to Spain because he knew—before I did—that the journey would be formative. Allen remained my research mentor since that first project, and during my last visit to his bedside, I shared with him three papers that were six years in the making. He helped shape this project, and I told him that I would keep asking questions.

He reminded me to believe in myself. Life cannot be scripted. Allen knew that, and I think, preferred that. But, sometimes, I wish I could have avoided certain dramatic scenes in my own life. I remember that after sharing one tough day with Allen, he told me that I must meet him at a local Dunkin Donuts. Right there, on napkins, he sketched out for me his view of the situation. And, then, he looked me in the eye and told me that I was special. I needed that, no matter how much validation I might have found elsewhere. Allen taught me that our most graceful moments in life could be found during the most trying times.

He told me to seek unexpected cheer. Every so often, Allen would meet with me to review my career plans. I would write down some goals that I would hope to accomplish within the next year or so. Yet, after we got through those items quickly, he would ask me about more important life goals. He seemed more pleased when I told him that I was trying to learn Spanish, that I liked to make cold soups, and that my wife, Carrie, and I were taking dance lessons. And, he was right: my academic accomplishments will always pale in comparison to these private goals. Carrie and I still remember with great fondness when Allen, unannounced and unexpectedly, took to the podium at our wedding and reminded us all of the importance of “good cheer.”

And so, today, I have the remarkable privilege of working as a physician in the Down Syndrome Program at Children’s Hospital Boston, a program and a place where Allen shared his wisdom and his heart for decades. And, it is already here on a weekly basis that I see his legacy at work. They may not all know it, but children with Down syndrome have more opportunities today because of Allen. Parents have fewer battles to fight because Allen tore down walls. Grandparents play leading roles because Allen understood them to be central figures in family life. Brothers and sisters become advocates because Allen established precedents.

He would be the first to remind us that we all need to “carry on.” I will. We must. And, he will be right there with us.


Monday, October 3, 2011

Family Weekend

Our first ever Family Weekend was beyond expectation. The weather cooperated, the food was terrific as always ( who will forget the Italian block party on Friday night where we had dinner under the twinkling lights with music in the background), to the desert reception where the beta version of our new web site was revealed and the Transition workshop topped off our open houses, an assembly and demonstrations.

Saturday, the Shut up Sisters had us laughing until our stomachs hurt, the Harvest Festival delivered it's usual day of fun and food, our flag football and cheering teams had their qualifying event and the day was topped off by the student and alumni dance.

To end the weekend with a Confirmation Mass was a blessing to our community.

Many pictures were taken, here are the ones from my camera


Tuesday, September 20, 2011

Asperger’s: By Any Name Deserving Early and Effective Treatment

I am a guest blogger for Ruderman Family Foundation blog, "Zeh Lezah". This translates from the Hebrew to that we are all "responsible for one another".  Here is my first entry as a gust blogger. To become a subscriber to this very intersting blog, follow this link:

Guest blogger Jo Ann Simons, President/CEO Cardinal Cushing Centers, Hanover, MA

In less than two years, The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will be published by the American Psychiatric Association. This detailed book functions as a bible for countless physicians and other health care professionals, as well as government, insurance and legal agencies. Clinicians worldwide use it to diagnose and develop treatment plans and options for mental illnesses and disabilities. But this edition, the 5th, brings with it a huge change: eliminating Asperger’s syndrome and pervasive developmental disorder as separate diagnosis. Instead, both diagnoses will be considered an unnamed subset of Autism Spectrum Disorder.

Of course change is rarely greeted with complete enthusiasm and these plans are no exception. Some advocates feel the new definition of Autism Spectrum Disorder is too broad and many within the Asperger’s community prefer being separate from the general autism category. Still others believe it will lead to earlier identification of individuals with what is now called Asperger’s and this in turn will lead to earlier and more effective services. Professionals, too, are divided on the potential impact of this change, with proponents arguing it will give more freedom to physicians to make a diagnosis and greater latitude to decide the best course of treatment on a case-by-case basis.

Here at the Cardinal Cushing Centers, we welcome any change that leads to earlier identification and intervention which in turn leads to improved lives and outcomes for people with disabilities. Although it’s too early to assess the impact of this change and the debate is certain to continue over the next two years and well beyond, there is one other planned change in DSM-5 that we can all get behind: changing the diagnostic term “mental retardation” to “intellectual disability.” This will bring the DSM criteria into alignment with terminology used by other disciplines and organizations and serve as a potent reminder that this disability deserves the consideration and respect of every other one.

– Jo Ann Simons

Thursday, September 15, 2011

Cushing Family Member Throwing Out Ceremonial First Pitch Tonight

DUXBURY, Mass. -- A longtime employee of VERC Enterprises is warming up in the bullpen. John Burgess has been selected to throw out the first pitch at the Boston Red Sox game at Fenway Park

tonight and I will be there!!!   Join the pre-game show and look for John.

Burgess works at the VERC Pembroke Mobil location stocking the shelves and cooler, and providing general maintenance. Nestle Water is honoring Burgess, one of 40 disabled/challenged employees at VERC, with the chance to take the mound based on his 19 years of service to VERC and his love for his hometown baseball team.

Burgess will get an up-close chance to see his favorite player David Ortiz from a seat of honor. Joining him at the game will be his girlfriend, his father and Richard Cleary, manager of the VERC Pembroke Mobil store.

"We're absolutely thrilled that John will have a chance to throw the first pitch at what should be a great game," said Leo Vercollone, president of VERC Enterprises. "John is a valued employee who always comes to work with a smile on his face -- I have a feeling that smile will be bigger than ever following [the Sept. 15] Red Sox game."

VERC Enterprises is well known for reaching out the disabled community. Earlier this summer the c-store operators -- with locations in Eastern Massachusetts and New Hampshire -- hit its goal of having 20 percent of its workforce made up of disabled and/or challenged individuals, as CSNews Online previously reported.

Member of Cardinal Cushing Family Throwing Out Ceremonial First Pitch#.TnIC7VRmZDY.blogger

VERC Employee Throwing Out Ceremonial First Pitch#.TnIC7VRmZDY.blogger

Wednesday, September 14, 2011

Noah Picked the Winning Number

 So, you all see that it was a fair drawing, here is a picture of Noah and Donna a member of the teaching staff. Here is what Noah wrote:
Today I got chosen to choose a number from a bucket for the President of our school I felt honored being chosen for this especially since I am a new student. It made me feel welcome here. I number I chose was...32!

Tuesday, September 13, 2011

You Did It!!!

I promised that I would give away an Ipod shuffle when I reached 50 followers on my blog and we are at 50.I will assign each of you a number between 1 and 50.  Tomorrow, I will put numbers 1-50 in a bag-shake it up and have a student pull one out.  I will notify the winner and I hope to continue to bring you interesting blog entries and another prize drawing....
In the meantime, I want to share with you some photos from our tribute to Hanover's first responders, which we had yesterday to mark the 10th anniversary of 9/11.  Hanover's Police, Fire and EMT's support us each and every day. They are here for us and I was so proud of our student's yesterday who showed their thanks. They read poems, presented them with art work and we all joined together in singing, "Proud to be An American."
A tree was dedicated as well.

Wednesday, August 31, 2011

The Health of People with Disabilities

I have long been aware of the health disparities that exist for people with disabilities ever since the 2001 literature reviews done by Yale University for Special Olympics. A new report from the Institute on Disability at the University of New Hampshire, examines the health status of working-age (18-64) people with disabilities, as reported to the Behavioral Risk Factor Surveillance System, the nation’s premier public health survey. According to their website:

Among the key findings in the report:

• If people with disabilities were a formally recognized minority group, at 19% of the population, they would be the largest minority group in the United States.

• The highest proportion of people who say their health is fair or poor is found in people with disabilities (40 percent, compared to 23 percent of Hispanics, 22 percent of American Indian/Alaska Natives, 18 percent of blacks, and 8 percent of Asians).

• People with disabilities have the least desirable prevalence rates for ten of the fourteen selected health indicators including cardiovascular disease and diabetes.

If the nation received this report on the health status of any of the above minority groups, there would be public outrage and calls for increased funding. But, because it involves people with disabilities, it falls upon us to demand that the health people with disabilities, be as high a priority as any other minority group.

For more information on the Health Disparities Chart Book and to download a copy, visit http://iod.unh.edu/Projects/health_disparities/chartbook.aspx

Monday, August 22, 2011

What Is This Cloud Computing?

I have been asking myself this question each time I have read about cloud computing in the pages of the business section and having no idea what it meant. The need to learn more became acute when I was asked to participate in a conversation at the Coleman Institute at the University of Colorado, titled:”Implications of Cloud Computing for Residential Support and Service for People with Disabilities” in October. .This conversation is going to include service providers, consumers and advocates, technologists, law and policy specialists.

I have learned that the cloud is going to be a game changer for people with disabilities. If you thought the IPad was revolutionary, we have seen nothing (and I believe the IPad is a game changer for people with disabilities). The cloud is going to be universe changing.

There is already an international initiative, the Global Public Inclusive Infrastructure (GPII) initiative that is already thinking and planning and we need to be informed and get involved so we can shape the thinking and policy that will come out of this initiative. For example, they are already shaping how people with disabilities will access all forms of technology in a way that will make sense to each user. Imagine, each person with a disability (or me) will have a unique identifier (stored in the cloud). Every time the person accesses their mobile phone, PDA. notebook, laptop, net book, computer, or any devise with a screen (Metro card ticket machines, ATM machines, etc), the interface will look the same because the user will be identified and the font, font size, color, background color, layout, will look the way they want. A visually impaired person will see the size and color that best suits them, the voice commands will be at the right volume; a person with a cognitive disability will see the same screen layout each time they access technology.

All this is just the beginning and important because as budget pressures increase, we must find less labor intensive ways to provide services and as in-person supports become less common, people will need to become more independent in their use of the web because their service providers may be at a remote location, monitoring supports for lots of people..

Wednesday, August 17, 2011

What is "Typical" ?

We use the word so often, that most of us hardly give notice to what "typical" means. This week, however, I have been thinking about it ever since a former student contacted me.  Greg shared with me that he was living in Texas, working , had gone to college and was collaborating with a filmaker about a film about his successful life.. It got me thinking about a question that I am frequently asked, "What is a typical Cushing student?". Greg says that part of his his success are the  opportunities he received at Cushing and for the staff who encouraged him to pursue his dreams.Since few of our students go to 4 year colleges, did that mean that Greg was not typical?  While I was pondering that thought, yesterday I was preparing to do a live call in with the local radio station, WATD. I called into the number I was given and the man who answered the phone and gave me my instructions, also shared this with me.  He was  a Cushing graduate, had a car, lived in his own apartment and worked his dream job at the radio station. He also said he owed his success to Cushing. Is he typical?

The answer is that there is no typical Cushing student. What is typical is the belief that we hold for every student and person we serve-to provide them with opoprtunities to learn, grow and to be an independent as possible.

Monday, August 1, 2011

A Picture is Worth a Thousand Words

Or so they say. In this case, it is worth 6 words. That is the length of our tag line. All Ages. All Abilities. All Together. Last week, we had a fun filled field day and Jovanny Gomes, one of our staff, found a new way to show his committment to what we do.

Friday, July 22, 2011

Special Event-Expect Delays at Exit 17

This morning, as I was driving to work, the above sign greeted me as I drove to work.  It was meant for those entering the Mass Pike from the Ted Williams tunnel. In spite of the fact, that I was heading down Rt. 93, the sign gave me pause.  The special event was really not a special event, but a funeral that was going to be held a few hours later in Newton.  There was good reason to expect delays because when a good person or a young person is buried, their funeral attracts many mourners. Today a very good person was buried and she was taken from us too young.Myra Hiatt Kraft, a powerful local philanthropist and wife of New England Patriots owner Robert Kraft, died at 68 on July 20 after a battle with cancer. Never simply a boardroom benefactor, she staffed phone banks for fund-raising drives and made persuasive calls when a cause needed the kind of financial boost only the rich can provide. Take a look back at the philanthropist's life and achievements.

Many wonderful things have been said about Myra Hiatt Kraft and as many of us have learned, they were all true. She was a woman devoted to her family and to philanthropy. Many of of her causes were born out of her own experiences. Her father's parents, sisters and brother were exterminated in Nazi concentration camps and she grew up with a devotion to Israel and to Brandeis, from which she later graduated. Her commitment to philanthropy was not limited to Jewish causes, in fact, Boston College, Holy Cross and Catholic Charities received major support from her generosity. And then there were the countless secular causes, most notable the Boys and Girls Club of Boston.
I never met Myra, but I felt her presence. While I loved seeing her cheer loudly for our New England Patriots, it was the knowledge of her many acts of selfless kindness, that made me proud she lived among us. I was not among the mourners at Temple Emannuel in Newton this morning but I join the millions across the globe who will miss her.

Monday, July 18, 2011

From Children's Hospital's Blog

The following was written by Brian Skotko , MD, MPP, a Physician at Children’s Hospital Boston’s Down Syndrome Program. It’s in response to a feature in GQ magazine that used insensitive language.

Brian Skotko and his sister, Kristin

On July 15, John B. Thompson of GQ magazine slammed Bostonians as the worst dressed in the nation. Evidently, our beloved Beantown is actually a “bad-taste storm sewer” where all the worst fashion ideas come to “stagnate and putrefy.” He further decries, “Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”

Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister.

My sister, Kristin, has Down syndrome, and let me explain what “Style Down Syndrome” really is. “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist.

Style Down Syndrome is strong-willed, persevering, and forgiving—because it has to be.

People with Down syndrome are ridiculed on a daily basis. Although not as obvious as GQ’s sport, children with Down syndrome do not always get invited to birthday parties just because they have Down syndrome. Young adults, freshly minted from high school, sometimes have trouble finding post-secondary opportunities. And, adults with Down syndrome are often the first to be fired when the economy tanks.

All of this comes at a time when people with Down syndrome are achieving previously unimagined successes. They are graduating, working, living and loving within our communities. So, why do people underestimate their abilities? It must be because they do not know someone with Down syndrome. Because, if they did, they would come to appreciate the life lessons that accompany their extra chromosome.

If my friends who are black were mocked, they would not take it. If my friends who are gay were slurred, they would not take it. My 400,000 fellow Americans with Down syndrome have been cheapened, and I will not take it. I invite GQ magazine to introduce its readers to real people with Down syndrome through the My Great Story campaign of the National Down Syndrome Society.

Tuesday, June 21, 2011

Special Olympics World Summer Games ATHENS 2011

Special Olympics World Summer Games ATHENS 2011

On Friday, I will be celebrate the gathering of 7000 Special Olympic athletes from 180 countries who will begin competition in Athens at the Special Olympic World Games. I have the honor to be marching in Opening Ceremonies with the delegation from the British Virgin Islands. The true honor, however, comes from witnessing the skill, courage and determination of these amazing athletes as they compete. I look forward to meeting as many athletes from as many countries as I can while I am in Greece.

Thursday, June 2, 2011

Spring Has Arrived

There is nothing better than being able to hold classes outside after a long and snow filled winter. This week, our students enjoyed the lovely weather and the opportunity to enjoy a music class with teacher RoseAnna Bragdon Cyr.

Wednesday, May 25, 2011

Boston Herald Editorial-$16 M to care for 14 people at Fernald

When it comes to the drawn-out closure of the Fernald Developmental Center the old stereotypes get turned upside down. This isn’t about faceless bureaucrats pinching pennies; in fact the state today is spending too much.

And the people who are unhappy about it aren’t just riled-up taxpayers — they’re advocates for the scores of disabled individuals in Massachusetts who must wait for services because there just isn’t enough money to go around.

Scheduled to close last July, Fernald remains open while the state considers appeals brought on behalf of residents set for transfer to other facilities.

But as the process drags out, the state is spending millions to care for the remaining residents of the Waltham campus, who today number all of 14. Last year the cost was $16 million. Gary Blumenthal, president of the Association of Developmental Disabilities Providers, labeled those costs “excessive.”

“They are the cost of delay and they are costing thousands of families the ability to gain services while preventing the state from effectively and efficiently using their limited dollars wisely,” he said.

Certainly families and guardians are entitled to act in what they feel is the best interest of the individuals in their care, but every dollar spent at Fernald is a dollar that isn’t available for the 30,000 individuals in need of services in the community or at home.

Blumenthal and other advocates are back at the State House this week, fighting proposed cuts to human services for fiscal 2012. They argue the pain would be made easier if the state weren’t sinking so much money into a facility like Fernald, and it’s impossible to argue that point.

Thursday, May 19, 2011

Israel Unlimited Visits Cushing

Our students and staff joined with representatives from non-profits, government ministries and self advocates from Israel this week. They were in the United States visiting innovative and creative programs in New York and Massachusetts. We were honored that we were included on their itinerary.

Wednesday, May 11, 2011

President Obama Appoints Our Friend Jim Brett

James T. Brett, Appointee for Chair, President’s Committee for People with Intellectual Disabilities

James T. Brett is the President and CEO of The New England Council, a position he has held since 1996. Prior to leading the Council, Mr. Brett served in the Massachusetts House of Representatives for 15 years. He currently serves as the Chairman of the Massachusetts Governor’s Commission on Intellectual Disability, and sits on the Board of Directors of the Massachusetts Association for Mental Health, and the Advisory Councils of the Robert F. Kennedy Children’s Action Corps and the New England Center for Children. Mr. Brett has been honored with several awards for his advocacy for the disabled, including receiving the Action for Boston Community Development’s Lifetime Public Service Award, the Massachusetts Special Olympics’ Distinguished Leadership Award, and the Hospice of Boston’s Humanitarian of the Year Award. In 1996, Bay Cove Human Services of Boston named a new community home for disabled adults "Brett House" in his honor. Mr. Brett is a graduate of American University in Washington, DC, and holds Masters Degrees in Public Administration from Suffolk University and from the John F. Kennedy School of Government at Harvard University.

Monday, May 2, 2011

Reflecting on Today

 Today, many of us awoke with the news that  Osama Bin Laden had been killed. Throughout the United States and the world, this news was met with much joy. However, it also gave many pause to ask, "How can we be celebrating the killing of a life?" I found an answer that suits me. The Scripture tells us (Amos 5:15) not only to "love good", but also to "hate evil".

Thursday, March 24, 2011

Simple Thought for Today

"Sometimes the perfect person for you is the one you least expect."
Unknown author

Thursday, March 17, 2011

Will you "Let Us In!"?

March 2st is World Down Syndrome Day and is known by the date. Since there are 3 copies of the 21st chomosome that make up Down syndrome, it is fitting that we celebrate on the 21st day of the 3rd month-get it?

Monday, March 14, 2011

ABLE Act-Important for our Families

Note from Jo Ann: Last month , I traveled to DC to speak with membersof our congressional delegation about the ABLE Act. Congressman Crenshaw says it well:

Editorial by Congressman Ander Crenshaw

Equality. Americans have strived to open the door to its strength across generations of our nation’s history. And, no population may understand the dedication and footwork needed to realize a level playing field for its players more than the disabled.

Great strides have been made to ensure that fewer of the disabled fall through society’s cracks. But there is ample ground to cover before they have the same opportunities as other Americans. A good place to continue that fight is in the area of financial planning.

Today, the federal government encourages Americans to save for future needs through a variety of tax-advantaged savings accounts: individual retirement accounts, education savings accounts (529s), medical savings accounts, and employer savings accounts (401-ks). With the right tools in place, life’s horizon can be brighter. Without them, dreams can pass by in the blink of an eye.

That’s why I am so encouraged by the growing number of supporters behind my “Achieving a Better Life Experience Act” (ABLE) to create tax-deferred savings accounts for the disabled. To date, 184 House Members and 22 United States Senators are co-sponsors of this legislation. Special Olympics, the National Down Syndrome Society, Autism Speaks, and National Fragile X Foundation are among a long list of organizations also supporting the bill. All understand the need to crack open a wider door to equality for the disabled.

The average cost of raising a child with a significant medical disability is more than $1 million over the course of their lifetime. Continuing education, transportation, housing, and medical care make up some of the predictable costs on that staggering bill.

ABLE accounts would relieve some of that burden, by allowing parents with disabled children or family members of disabled individuals to invest through a tax deferred savings account that could be drawn from for these future expenses. No longer would they have to stand aside and watch as others use IRS-sanctioned tools like 529 education savings accounts to lay the groundwork for a brighter future. They would be able to do so for their child as well.

Creating an ABLE account is as simple as opening an account at the local bank. Anyone currently receiving supplemental security income (SSI) benefits would be eligible, and qualified expenses include educational and transportation expenses, medical and dental care, and employment and training support.

Anyone may contribute to an ABLE account and rollovers would be allowed without penalty; however contributions to these accounts are capped at $500,000. Under the proposal, the principle in the account would accrue interest tax free during the life of the beneficiary. When distributions are made to the beneficiary for qualified expenses, the distributions are excluded from the gross income of the beneficiary.

In real life terms, that means young Sydney Leach, who was born with Down Syndrome in Jacksonville, Florida and is now finishing first grade, can plan for her future. A bright student who can read, write, and perform simple arithmetic, she hopes to gain a post-secondary education. Eventually, Sydney will work and earn a salary just as millions of other Americans do. Under current law, however, she cannot keep more than $2,000 in assets (whether earned or through gifts) or she will lose her benefits, such as Medicaid and Social Security Disability Insurance. With an ABLE account, that roadblock would be lifted enabling her to save and use her earnings to cover qualified expenses.

The cost to reform U.S. tax code to offer ABLE accounts would be minimal, but the positive impact for Sydney Leach, her family, and others who are struggling to cope with an uncertain future would be sizeable.

They and all the disabled deserve that opportunity. A change in the tax code so they can Achieve a Better Life Experience is a step forward toward equality with every other American – a step worth taking.
Senator Scott Brown

Rep. John Tierney of my home district.

A blurry pic of Sen. John Kerry

Friday, March 11, 2011

The "Shut Up Sisters" Are Coming to Cushing-October 1

Meet the “Shut Up Sisters”

Mary Kate and Ashley minus the twinness and the thinness.

Gina (Terrasi) Gallagher and Patricia (Terrasi) are sisters who share a love of wine, humor, and writing (excluding checkwriting). They are also among the growing number of parents raising children with disabilities. Inspired by the success of their sisterly heroines, Mary Kate and Ashley, and fed up with listening to parents brag about their “perfect children” and never asking about theirs, the sisters decided to seek therapy by writing a book. So in 2006, they self-published their first book, Shut Up About Your Perfect Kid! The Movement of Imperfection, which explores the humorous, heartwarming side of raising an imperfect child in a world pre-occupied with perfection.

It wasn’t long before the book starting selling and the sisters were asked to come and speak at parenting, autism, and mental health conferences in Massachusetts and other exciting parts of the country. “Pack your bags, Gene, we’re going to Akron, OH, the birthplace of rubber.”

With strong sales, the book was picked up by Random House and in August 2010, an expanded version, Shut Up About Your Perfect Kid! A Survival Guide for Ordinary Parents of Special Kids, was introduced. The new book includes helpful tips, information, and inspiration to help caregivers of special children cope with the challenges of managing “imperfect” children in a world-pre-occupied with perfection. The book features a Foreword by Dr. Ross Greene and prescriptive advice from Lee Ann Karg, M Ed, a Disability Advocate.

They will be speaking at our Hanover campus on Ocotber 1, 2011 as our Opening Act of our fabulous fall Harvest Festival.

Wednesday, March 9, 2011

Read Across America Came to Cushing

Thank you to all of our wonderful volunteers who recently read at the Cardinal Cushing 2011 Read Across America Celebration! We also celebrated the birthday of the late Dr. Suess. The highlight of the morning for me was student Lee R., who rapped and Matt F. who read a Dr. Suess book. They were the stars of the morning!!!!


Students and staff alike had a relaxing morning of stories and rhymes, provided by the following volunteers:

Lee R.
The McElmans
Jo Ann Simons
Larry Sauer
The State Street Volunteers
John Pappone
Roberta Pulaski
Matt F
The OT, PT and Speech Specialists!

The McElman family
This important event further enhances our student’s joy of reading and whimsy. We all appreciate the efforts of everyone involved.

Thursday, February 17, 2011

Our Own Shannon Driscoll Writes

Reprinted with permission from the Massachusetts Down Syndrome Congress February 2011 e-Newsletter

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.

Wednesday, February 16, 2011

Education Unlocks Potential

Swampscott's Jonathan Derr advocates for people with Down syndrome and others with disabilities to go to college.

By Terry Date

In Jonathan Derr’s mind, school is a mighty thing.

The 31-year-old, who has Down syndrome, graduated from Swampscott High School — and Cape Cod Community College.

Today he works two jobs and is on the road to getting his driver’s license.

But education has been the key to his life.

It has fed his mind and made work, a social life and driving possible.

Now, he wants others with disabilities including Down syndrome to have a shot at college.

High School

Derr, at home in his family’s Swampscott living room over the holidays, said he arrived to a crossroads early in high school.

He had attended Marblehead schools since he was a child because of the special programs the district offered. Then, early in high school, he changed directions because he did not feel challenged there.

Derr pauses before he speaks, then speaks carefully, choosing words that reflect what he wants to say.

“Mom called Swampscott High,” he said. “It was amazing. All my friends were there.”

He transferred, completing his sophomore through senior years at the school, which, by then, could support him.

“Basically, I found life,” he said.

He managed the lacrosse team, helped the basketball team and played on the golf team.

Every Friday he went to someone else’s house for dinner.

Also, he was challenged academically.

“I kind of focused on the books more,” he said. “History, math, science, wood shop, health.”

He graduated at 18 years old.


At 18, Derr learned about a program on Cape Cod that helps people with disabilities get ready for the outside world.

He also learned that he could attend Cape Cod Community College, one of the very few colleges in New England that offer programs for students with Down syndrome.

Derr learned cooking, office, retail and maintenance skills. He graduated from both the life skills and college programs.

He has worked six years at a golf course, starting out shagging balls on the driving range then, in 2006, being promoted to the Pro Shop.


More recently he has taken his experience back to the classroom, telling younger students with disabilities that their futures are bright if they work hard.

“No one likes to be held back,” he said.

Programs that bring students with disabilities and students without them together benefit both groups, he said. They learn more about each other.

His mother, Jo Ann Simons, President and CEO of the Cardinal Cushign Centers, chairman of the National Down Syndrome Society and other organizations that advocate for people with disabilities, says Masachusetts is a leader in post-secondary education but not in the education of students with disabilities.

Brian Skotko, a doctor at Children's Hospital Boston who advocates for people with Down syndrome, says they have proven that with appropriate support they do succeed in grade schools and high schools.

Many people with Down syndrome want to develop their talents to find meaningful employment but few colleges around the country give them that opportunity, he said.

“We need more postsecondary opportunities for young adults with Down syndrome,” Skotko said.


Derr’s opportunity gave him a chance to learn.

He said he has watched and interacted with others and learned from them.

“I’m slow,” he said. “I like to watch people to see what they can do.

Basically, what I learned was that everyone has strengths and weaknesses.”

Friday, February 11, 2011

Check out Nickmorseart.com

Talk about long, strange trips. Nick Morse has been on one. He was born in Boston, lived at first in Cambridge, then Hingham, then Newton and Wellesley, then Hanover where he attended the Cardinal Cushing Center for 10 years. He now resides in a group home in Watertown. He has an extraordinary pedigree -- his grandfather on his deceased mother's side, Alexander Rotow, founded color television for RCA. Perhaps it's not a surprise that Nick, despite his special needs, has applied a love of color to his art. His father has taken him to many vibrant rock concerts with spectacular stage shows -- Green Day, Aerosmith, Tool, Pearl Jam, Roger Waters, Jimmy Buffett and Godsmack to name a few -- and Nick has absorbed them all. They have also caught many animated movies and action films and have spent a lot of time at the Museum of Fine Arts looking at the work of Impressionists from Monet to Van Gogh. Nick's eyes light up when surrounded by beautiful art, and his Dad's light up to see him so happy. "He has been the love of my life", says Steve Morse, Nick's dad and former music critic at the Boston Globe for 30-plus years.

Nick Morse can be contacted at:


Friday, February 4, 2011

Congratulations to our Sue Martin

A Good Story to Share on a Cold Day

I tried not to be biased, but I had my doubts about hiring Stevie. His placement counselor assured me that he would be a good, reliable busboy.

But I had never had a mentally handicapped employee and wasn't sure I wanted one. I wasn't sure how my customers would react to Stevie.

He was short, a little dumpy with the smooth facial features and thick-tongued speech of Downs Syndrome. I wasn't worried about most of my trucker customers because truckers don't generally care who buses tables as long as the meatloaf platter is good and the pies are homemade.

The four-wheeler drivers were the ones who concerned me; the mouthy college kids traveling to school; the yuppie snobs who secretly polish their silverware with their napkins for fear of catching some dreaded "truck stop germ" the pairs of white-shirted business men on expense accounts who think every truck stop waitress wants to be I shouldn't have worried. After the first week, Stevie had my staff wrapped around his stubby little finger, and within a month my truck regulars had adopted him as their official truck stop mascot.

After that, I really didn't care what the rest of the customers thought of him. He was like a 21-year-old kid in blue jeans and Nikes, eager to laugh and eager to please, but fierce in his attention to his duties. Every salt and pepper shaker was exactly in its place, not a bread crumb or coffee spill was visible when Stevie got done with the table. Our only problem was persuading him to wait to clean a table until after the customers were finished He would hover in the background, shifting his weight from one foot to the other, scanning the dining room until a table was empty. Then he would scurry to the empty table and carefully bus dishes and glasses onto his cart and meticulously wipe the table up with a practiced flourish of his rag. If he thought a customer was watching, his brow would pucker with added concentration. He took pride in doing his job exactly right, and you had to love how hard he tried to please each and every person he met.

Over time, we learned that he lived with his mother, a widow who was disabled after repeated surgeries for cancer. They lived on their Social Security benefits in public housing two miles from the truck stop. Their social worker, who stopped to check on him every so often, admitted they had fallen between the cracks. Money was tight, and what I paid him was probably the difference between them being able to live together and Stevie being sent to a group home. That's why the restaurant was a gloomy place that morning last August, the first morning in three years that Stevie missed work .

He was at the Mayo Clinic in Rochester getting a new valve or something put in his heart. His social worker said that people with Downs Syndrome often have heart problems at an early age so this wasn't unexpected, and there was a good chance he would come through the surgery in good shape and be back at work in a few months.

A ripple of excitement ran through the staff later that morning when word came that he was out of surgery, in recovery, and doing fine.

Frannie, the head waitress, let out a war hoop and did a little dance in the aisle when she heard the good news. Marvin Ringers, one of our regular trucker customers, stared at the sight of this 50-year-old gra ndmother of four doing a victory shimmy beside his table

Frannie blushed, smoothed her apron and shot Marvin a withering look.

He grinned. "OK, Frannie, what was that all about?" he asked.

"We just got word that Stevie is out of surgery and going to be okay."

"I was wondering where he was. I had a new joke to tell him. What was the surgery about?"

Frannie quickly told Marvin and the other two drivers sitting at his booth about Stevie's surgery, then sighed: " Yeah, I'm glad he is going to be OK," she said. "But I don't know how he and his Mom are going to handle all the bills. From what I hear, they're barely getting by as it is." Marvin nodded thoughtfully, and Frannie hurried off to wait on the rest of her tables. Since I hadn't had time to round up a busboy to replace Stevie and really didn't want to replace him, the girls were busing their own tables that day until we decided what to do.

After the morning rush, Frannie walked into my office. She had a couple of paper napkins in her hand and a funny look on her face.

"What's up?" I asked.

"I didn't get that table where Marvin and his friends were sitting cleared off after they left, and Pete and Tony were sitting there when I got back to clean it off," she said. "This was folded and tucked under a coffee cup"

She handed the napkin to me, and three $20 bills fell onto my desk when I opened it. On the outside, in big, bold letters, was printed "Something For Stevie."

"Pete asked me what that was all about," she said, "so I told him about Stevie and his Mom and everything, and Pete looked at Tony and Tony looked at Pete, and they ended up giving me this." She handed me another paper napkin that had "Something For Stevie" scrawled on its outside.. Two $50 bills were tucked within its folds.. Frannie looked a t me with wet, shiny eyes, shook her head and said simply: "truckers."

That was three months ago. Today is Thanksgiving, the first day Stevie is supposed to be back to work..

His placement worker said he's been counting the days until the doctor said he could work, and it didn't matter at all that it was a holiday. He called 10 times in the past week, making sure we knew he was coming, fearful that we had forgotten him or that his job was in jeopardy. I arranged to have his mother bring him to work. I then met them in the parking lot and invited them both to celebrate his day back.

Stevie was thinner and paler, but couldn't stop grinning as he pushed through the doors and headed for the back room where his apron and busing cart were waiting.

"Hold up there, Stevie, not so fast," I said. I took him and h is mother by their arms. "Work can wait for a minute. To celebrate your coming back, breakfast for you and your mother is on me!" I led them toward a large corner booth at the rear of the room.

I could feel and hear the rest of the staff following behind as we marched through the dining room. Glancing over my shoulder, I saw booth after booth of grinning truckers empty and join the procession. We stopped in front of the big table. Its surface was covered with coffee cups, saucers and dinner plates, all sitting slightly crooked on dozens of folded paper napkins. "First thing you have to do, Stevie, is clean up this mess," I said. I tried to sound stern.

Stevie looked at me, and then at his mother, then pulled out one of the napkins. It had "Something for Stevie" printed on the outside. As he picked it up, two $10 bills fell onto the table.

Stevie stared at the money, then at all the napkins peeking from beneath the tableware, each with his name printed or scrawled on it. I turned to his mother. "There's more than $10,000 in cash and checks on that table, all from truckers and trucking companies that heard about your problems. "Happy Thanksgiving."

Well, it got real noisy about that time, with everybody hollering and shouting, and there were a few tears, as well.

But you know what's funny? While everybody else was busy shaking hands and hugging each other, Stevie, with a big smile on his face, was busy clearing all the cups and dishes from the table. Best worker I ever hired.

Plant a seed and watch it grow.

At this point, you can bury this inspirational message or forward it fulfilling the need!

If you shed a tear, hug yourself, because you are a compassionate person.

Well.. Don't just sit there! Send this story on! Keep it going, this is a good one.