Monday, December 6, 2010

Greetings from Milwaukee

Sister Magdalena
Earlier this fall, I was in Milwaukee for a meeting with all the other corporate ministries that are sponsored by the Sister's of St. Francis of Assisi. I was able to meet with several of our sisters who worked at Cushing. I thought you would  like to see the pictures I took.
Chris Pike and can you name everyone else? There is Sr. Clarinda...

Wednesday, December 1, 2010

Graduation 1971

Greg Wood, a Cushing alumni from Texas, and I have been communicating via email and Facebook about his time in Hanover.  Recently, he sent me a picture of his class tip with Sr. Rita to Washington, DC from 1971.  As it happened, it was the same year I graduated from high school.  What struck me  was  that my high school did not offer a trip to Washington to meet our representatives in Congress but, a school for students with disabilities provided that opportunity.  I think that was pretty progressive and another example of the commitment of our founder, Cardinal Cushing and our sponsors, The Sister's of St. Francis of Assisi to provide the highest quality education to our students.  A tradition we uphold today.

Greg is next to Sr. Rita
 Greg also donated a flag that was flown over our United States Capitol in memory of Senator Kennedy.  We will be flying it proudly on our Hanover campus.

Monday, November 1, 2010

The Russians Came and Make Way for Ducklings

Touring the campus with Jim Middleton and me.
Recently, the Weymouth Rotary welcomed a group of visiting Russian human service leaders, interested in intellectual disabilities, and toured them to various non-profit agencies.  We hosted them for a day and shared with them the Cushing Centers.

They couldn't resist the Cushing Trader.

Now you are probably wondering about what Make Way for Ducklings have to do with this post.  Last week, the Lederman family donated an original water color of a painting of "Make Way for Ducklings" to the student library at Hanover.  It is a childhood favorite of Class of 2011 student Amanda Lederman. Along with the  painting Amanda and her family donated 2 copies of the book in addition to many of Amanda's childhood books.

Amanda and Jude Morgan.

The Lederman's with Doug Frazier and me.


Monday, October 25, 2010

A Report from One of Our Classrooms

'Nala' Comes to Cushing

This past fall, 'Nala', a trained therapy dog has been coming on Thursdays to visit the school program. Barbara, a volunteer in the Challenger Classroom, has been doing presentations to each class with Nala. They have been learning about how to care for pets, such as Nala, by bathing, brushing, and even cleaning teeth!

Nala has also spent time with some students. They have been taking turns and doing oral reading of books and stories to Nala. The students have stated that they feel 'relaxed' while reading aloud to Nala.

We all have enjoyed the Nala visits and have learned about how animals can really help people.

The Challenger Classroom

Thursday, October 21, 2010

Monday, October 18, 2010

MIT's McGovern Institute Studies Autism

Last week I attended a program honoring 10 years of the McGovern Institute and its study of the brain. Among the speakers, Gerald Fischbach, M.D. of The Simons Foundation, stood out to me as he shared the work being done in understanding autism. He also explained that we are not in the middle of an autism explosion, as some media would like you to believe. Instead, we are now able to classify people who have other disabilities in addition to autism. So, we are seeing people with autism and intellectual disability, autism and bi-polar, autism and Down syndrome, etc. The actual numbers of individuals with just autism has not changed but, we are now able to include in the autism spectrum and the numbers being counted, people with autism in addition to other conditions.
Jane Pauley, who shared her own story of mental illness and Alan Alda were also among the evening's speakers.
Jo Ann and Alan Alda

Wednesday, September 29, 2010

Feel Good Today

Paul Daugherty delivered the keynote address at the Remarkable Families Symposium on Friday, April 3, 2009 in the Cintas Center. Paul is a graduate of Washington and Lee University with a degree in journalism. He has worked in Baltimore, Norfolk, Va., and Dallas and is now a columnist for the Cincinnati Enquirer. He is an award-winning sports journalist and author and has been Ohio's Columnist of the Year seven times. Married with two children, Paul is also a dedicated husband and father who has been involved in disabilities advocacy for several years.

Keynote Address

Thank you very very much for inviting me to speak to such a "remarkable" group of people. Life has given you a gift. If you don't realize that already, you will in time. I promise you.

My daughter Jillian is 19. She is a senior in high school, who will attend Northern Kentucky University in the fall. She has performed in the school play, she has managed the school volleyball team, she was on the junior varsity dance team that entertains at halftimes of basketball games. Believe it or not, she holds the school record in her weight class for the bench press, the dead lift and the squat. (Dad already had one son. Maybe he wanted another.) Last summer, she worked 12 hours a week in a daycare center, making almost $8 an hour. The kids loved her, and cried when she left to go back to high school.

And she has Down Syndrome. In some respects, that matters a great deal. In others, it matters not at all. It's about perception, mostly. It's about insisting on getting what you pay for, and not leaving the ticket counter or the insurance office -- or the high school conference room -- until you get it.

Ultimately, it's about giving your child the chance every other child gets.

People look, but they don't see. People, and I'm talking qualified professionals, people trained in special education, too often don't look at Jillian and see possibility. They look at a child with Down Syndrome. They don't see who she can be. They conjure a stereotype. It's easier that way.

Jillian once had a special ed teacher who sat in an IEP meeting with us and said, quote, she can't learn. Jillian has had teachers, too many teachers, who could not be bothered to explore her possibility. It has been amazing, watching these teachers, who at some young age must have though teaching was an opportunity to change a kid's life. Presented with Exhibit A in my daughter, most of them have attempted the bare minimum. They have missed their calling. They're enriched only by a paycheck. My wife Kerry and I have spent 19 years trying to change their perceptions. We will never stop. We have been guided by one thought:

Expect. Don't accept.

We have not allowed our daughter's aspirations to be tethered to the the way people look at her, without seeing her. We let Jillian set her own bar. Wanna dance on a team? If you're good enough. Wanna get a summer job working with kids? If they'll hire you. Wanna set the school weightlifting record. Sure, great, absolutely. No steroids.

We never say never. Never is not a word. It's a self-defeating state of mind.

We have to change the way people think before we can change the way they act. Altering perceptions is like breaking a stone with drops of water. It can be done, if you're willing to take the time.

It hasn't been easy. Who said raising any child was easy? Kerry and I have blazed more trails than Daniel Boone. We have sat in countless meetings with teachers and administrators. We have spent countless nights and hours agonizing over homework assignments that were not modified for Jillian or overly dumbed-down for Jillian, you know, that kid with Down Syndrome. We have exhausted a lifetime's worth of patience in 12 short years.

We have spent an equal amount of time educating the educators. Don't just look at our daughter. See her.

Don't put up Stop signs for my kid. Let her direct her own traffic. If you don't, we will be there, hauling you into a meeting, demanding for Jillian what you so freely offer every other kid: An honest chance. Let her tell you the height of the bar. Expect, don't accept.

Great strides are made when we remove the word No from our vocabularies, when we expand our thinking to account for the impossible. We went to the moon, didn't we? We eradicated polio, we can take pictures with a telephone. We elected an African-American president of the United States.

All any of it required, at base, was a disbelief in limitations. She can't learn? No, you're not willing to let her try. As parents, we cannot let that go unchallenged, not ever. We owe our kids that much. Expect, don't accept.

Do not give in to those who would ignore their better natures, because it's easier to retain a stereotype than change it. Change requires work, but it's the only way we improve as human beings. When people resist change, protest. Scream real loud. Give 'em hell. Don't let them tell you what your kid can do. Expect, don't accept.

Let me tell you some about the life of Jillian Daugherty, young and improving.

On the harshest emotional night, Jillian Phillips Daugherty couldn't wait to get out. The occasion of her birth was melancholy to everyone but her. Jillian loved being born. Her older brother Kelly had taken his sweet time. He slept late in the womb. Fourteen hours of labor before he emerged, wary and wailing. Jillian couldn't wait to see everybody. It took less than an hour. She came out like a watermelon seed between two fingers. Hel-lo world!

I think about this all the time now, whenever Jillian wakes up early on days she can sleep late, or hears me coming into the house and screams like it's 1955 and I'm Elvis. Jillian can't wait for the next moment, the next hour, the next chance to be Jillian. Jillian wasn't born 19 years ago. She was unleashed.

When she was a couple months old, she developed mucous in her chest and lungs so thick, she could barely breathe. Jillian was in the hospital 11 days and nearly to the point she needed a respirator. Then one more in a silent army of doctors poked her in the heel with yet another needle.

Ticked her off.

Jillian screamed so profoundly, it knocked the snot from her chest.

She's never stopped expressing herself. There was a time, many, many years ago, when I yelled at her for some transgression or another. Unfortunately, having Down Syndrome doesn't mean you won't spill apple juice or try to ride the dog like she's National Velvet.

Anyway, I'm airing Jillian out. During a pause in the action, she looks up and says, "Do you want a piece of me?"

My daughter is a piece of work.

Something that we as parents have learned is, every small achievement is worth celebrating: Tying shoes, answering the phone, writing thank-you notes, making the bed, fixing breakfast. After each of these little triumphs, I always ask myself: Who got the better part of this deal? Jillian? Or me?

As parents, we've spent lots of time hearing what our kids can't do, will never do. We heard it from the first day. She'll never be able to... complete the sentence. We never bought into that. You get what you expect. Not what you accept. It is the difference between settling and battling. The difference between daydreams and real ones. You get what you expect. Not what you accept.

Jillian would never ride a two-wheeler. That's what we heard. She wouldn't have the coordination. Even if she did, she wouldn't have the stamina. These Down kids, you know, they're fragile little people.

Many years ago, we got Jillian a bike with training wheels. She used it for a summer. Then the training wheels came off. For awhile, Jillian's wheels came off, too. It was like a guy in Nebraska, finding his sea legs.

Jillian, being Jillian, banged into this two-wheeled business with both feet. And both knees, both elbows and a forehead or two. We spent three months learning to ride the two-wheeler. It was like cracking a code or something. Every day, I'd drag poor Jillian out to the driveway we share with three other houses. I'd help her up, get her started and hold the back of her seat as she began pedaling.

For a month at least, Jillian ran that bike the way Mike Brown runs the Bengals. She'd sway and swerve and after about a 2-yard gain, crash.

We made progress, though, mainly because Jillian has a will like an I-beam. The kid never quit. The amazing thing was, she wasn't doing it so much for her as for me. She knew how much I wanted her to ride that two-wheeler. She saw how happy it made me when she managed a few more feet than the day before. My joy became hers.

Then one day, I pushed and ran alongside and... let go. Jillian kept going, to the end of the driveway, dread mixed with elation. "Dad, I'm doing it. Oh my gosh." She was off and riding. I was in the clouds. The last time Jillian and I went riding, we did 20 miles on the Loveland Bike Trail.

Don't accept. Expect.

What else did we hear? These kids won't read. Jillian reads at about a 6th-grade level. She's in a book club. These kids aren't good socially. There are times I wish that were the case. In her elementary school, Jillian was known as The Mayor. In intermediate school, she was appointed an ambassador, a 6th-grader charged with showing the rookie 5th-graders around the building.

Education should be the business of instilling hope. Too often, it isn't. I don't like being a pioneer. I'm not curing polio. I'm just expecting teachers to do their jobs. I'm not accepting any less. There are teachers at Jillian's school now who frown at the mention of my name. And my wife's. We're a pain in the ass. Other parents have to change diapers. We have to change minds.

But what a payoff.

Here is what Jillian does. Here is the service she performs, by being her: She opens my eyes to the wonder of the ordinary. I've enjoyed the little wins with Jillian I took for granted with her brother: Using a fork, spelling, times tables, discerning the incredibly vital difference between homogeneous and heterogeneous mixtures. Actually, for several years, Jillian has had homework I can't do, making me wonder who's got the syndrome thing here.

I would never have seen any of this without Jillian's vision. I look forward to the next generation of milestones: Jillian home alone overnight, Jillian in her own apartment. Jillian, God help us, learning to drive.

As these kids grow, so do we. We spend less time asking why and more asking why not. Their limitations are obvious. What's less apparent is how many of those limitations disappear when we expect better and more, from them and ourselves. And when we accept nothing less. Their potential is limited only by our preconceptions.

I remember in the weeks and months after Jillian was born, listening to a Bruce Springsteen song called Walk Like A Man. One of the lines was, "I was young and I didn't know what to do, when I saw your best steps stolen away from you; I'll do what I can. I'll walk like a man."

I was wrong about that. From the instant she appeared, Jillian has never lost a step. She doesn't get cheated, to use a baseball term. Jillian gets her hacks. We quickly got over the immediate emotions surrounding her birth. Jillian, happily, never got over being Jillian.

I see Jillian with different eyes. I love her with a different part of my heart. I can't help that. But I don't expect anything less from her. And I accept nothing less than all she has.

Life doesn't let us in on many secrets. One of them is, happiness comes to those who do the best with what they have. The more we struggle in our limited, human way, to make sense of things, the more we see that some things don't come with sense included. The best we can do is the best we can do.

It's called Down Syndrome because a guy named Down identified it. It's not down at all, not for the kids and the teachers and classmates who choose to embrace them. Certainly not for those of us who are privileged to know them and love them.

As parents of children with disabilities, we face unusual challenges. But also, unique opportunity. As we blaze the trails, bend the minds and tweak the perceptions, we reap the rewards of knowing we've made the world a better place. We're only as good as the way we treat each other.

It's hard. It's damned hard. But we wouldn't be here today if we didn't believe, with everything we've got, that it's worth it. Expect, don't accept. Carry on and thank you again for the privilege of speaking to you today.

Tuesday, September 28, 2010

A Picture Can Be Worth 1000 words

As I was leaving our Hanover campus one recent day, I stopped and observed a student and a staff person near our chapel and I was moved by what I saw. And thankful to have a camera. 

Friday, September 24, 2010

New Beginnings

While we officially recognize January 1st as the beginning a new calendar year, September is also a time of new beginnings. The summer winds down, vacations conclude and a new school year begins for many.  Here at the Cushing Centers, we have, in addition to the new school year, some exciting things to share with you.
We have 90 residential students and over 30 day students in Hanover-our largest enrollment in over 6 years. Our Hanover campus is buzzing with the excitement of so many new and returning faces.  In Braintree, our students and adults  are eager to begin a new year.
Our intergenerational Hanover community where people of all ages and all abilities work, live and play together is being played out in some new ways.  Our dining room now welcomes the residents of Cushing Residence to share lunch with our students every Monday, Wednesday and Friday. A nutritious and economical meal is enjoyed by seniors as they eat alongside  our students and staff.
Another exciting venture is the expansion of menu items offered at our Bass Village Cafe. From 11 AM-2 PM, Mondays-Friday, beginning Sept. 27th, soups and made to order sandwiches will be added to the menu. In addition to being a great local coffee shop, we look forward to welcoming the lunch crowd.
Whether you are eating in the dining room or the Bass Cafe, you will be served a great meal with a big smile as our students learn valuable work skills.
Earlier this week, we joined with people throughout the world in celebrating the Intergenerational Day of Peace through the Pinwheels for Peace project. We made a public and visual statement about our feelings about  peace/ tolerance/ cooperation/ harmony/ unity by planting pinwheels in our own peace garden-The Sister's of St. Francis of Asissi Peace Garden.

Friday, August 27, 2010

Herb and Susan Zarkin Visit

Caroline Dane admires the student art that was presented to the Zarkins.
Our students presented the Zarkin's with original student art.
Recently, our Project Forward students shared with BJ's Chairman, Herb Zarkin and his wife, Susan, their college and Cardinal Cushing experience. The generosity of the Zarkin Family Foundation provided funding for our students to attend Cape Cod Community College.

Wednesday, August 25, 2010

Governor and Kitty Dukakis visit Cushing

Our Leadership Team were as excited as our students.
This week we were treated to a real thrill as history came to life for us in Hanover. Governor Michael Dukakis, who served as governor for 12 years, visited classrooms and work sites, delighting students and staff with stories of Massachusetts and national issues and politics. It was a timely visit since our students are studying Massachusetts. They even joined in classroom activities in the Challenger classroom. While we were all excited to meet someone who contributed so much to our state and our country, we were equally impressed with Kitty's work in Kenya  and for sharing with staff her battle with depression and her advocacy on behalf of others. Her book, Shock: The Healing Power of Electroconvulsive Therapy, is a moving account of her battle and healing.  We wish them both happiness and thank them for spending a rainy afternoon with us. Enjoy the pictures:
The Governor is about to help our students with a map of MA by filling in Brookline
We believe!!

I Am Proud to Work at a Non Profit

From the Board Cafe...

The most listened-to radio show in America got it wrong again last week. Conservative radio personality Rush Limbaugh said about nonprofit staff: "Bunch of lazy idiots. Many of them don’t want to really work. Nonprofits siphon contributions . . . these people are rapists, in terms of finance and economy."

We like what Robert Egger had to say on the subject, but maybe Rush is right for once. We nonprofit staff are so lazy we would rather follow environmental regulations than create huge amounts of work for ourselves trying to cap mismanaged oil wells. We're so lazy we'd rather advocate for preventive care than suffer from chronic illness and expensive treatments. Most nonprofit staff are so lazy they don't even bother to collect paychecks: they're volunteers.

And talk about idiotic: we're such idiots we thought we could get the vote for women, Medicare for the elderly, and regulations against unsafe toys. We thought it was okay for kids in wheelchairs to go to regular schools. We thought we could overturn apartheid in South Africa.

If we're accomplishing this much being "lazy idiots," maybe by working a little harder we could get rid of hateful, inaccurate radio hosts?

Friday, August 6, 2010

News from Arc Massachusetts

FMAP Passes Senate; House to Vote Tuesday

On Thursday, August 5, the U.S. Senate voted 61-39 to pass a bill whose amendments will extend some measure of enhanced Medicaid (FMAP) funding to states, including an expected $506 million to Massachusetts.

The bill, H.R. 1586, would extend portions of FMAP funding that were set to expire in December of this year. With passage of the legislation, $15 billion will be used to extend increased funding through June of 2010, though at a lower rate than included in the ARRA stimulus package.

Republican senators Susan Collins and Olympia Snowe, both of Maine, voted to pass the bill. Massachusetts' senator John Kerry also voted in favor of the legislation. Senator Scott Brown voted against it.

The bill cleared a procedural hurdle on Wednesday when the Senate approved a motion for cloture on the bill, preventing a filibuster. After the Wednesday vote, Speaker of the House Nancy Pelosi announced that she would call back the House to pass the bill. With the bill's passage through the Senate today, the House will consider the bill next Tuesday.

The extension of increased FMAP funding is welcome news in Massachusetts, where Governor Patrick was forced to make significant cuts to the human services safety net and local aid in anticipation of increased funding being rejected.

"I applaud the U.S. Senate for moving forward on this critical effort to save jobs, support education, and maintain critical services for working families and our most vulnerable citizens," Governor Patrick said in a statement. "I especially appreciate the leadership of Senator Kerry in ensuring that this bill comes to a vote on the merits. We are lucky here in Massachusetts to have an entire House delegation that has already shown their strong and vocal support for this initiative and I am hopeful that after final Senate approval the House will act on this vital legislation quickly."

The Arc played a central role in efforts pushing Sen. Brown to change his vote against funding FMAP, holding a vigil with partner organizations in his Boston offices in late June. We are disappointed that Sen. Brown did not come around, but thankful that the Senate as a whole did. The quality of life of several thousand individuals and families is dependent on those funds for critical cuts (including $19 million in the Department of Developmental Services alone) to be restored. We applaud our federal lawmakers for their persistence on this critical issue.

In This Issue
FMAP Passes Senate
R-word Removed from Mass. General Laws
Autism Insurance Reform Signed
Local Business Supports Individuals with Intellectual Disabilities
Letter to the Editor
Looking for a Roommate
About Us

The mission of The Arc of Massachusetts is to enhance the lives of individuals who have intellectual and developmental disabilities and their families. We accomplish this through advocacy of supports and services based in the community.

Governor Signs Bill Removing R-word from Mass. General Laws

Advocates yesterday crowded Governor Deval Patrick's office as he signed legislation replacing the words "mental retardation" with "intellectual disabilities or disability" in the Massachusetts General Laws.

The legislation, "An Act Eliminating the Word 'Retardation' from the General Laws" (H4922), was sponsored by Rep. Tom Sannicandro whose son has Down syndrome. The bill's passage reflects the passionate work of advocates, particularly self-advocates with developmental disabilities, and follows last year's renaming of the Department of Developmental Services, which had previously been called the Department of Mental Retardation.

"This is an important step in addressing the stigma faced daily by people with disabilities. Words do matter," said Leo Sarkissian, executive director of The Arc of Massachusetts. "As we saw last year with the DMR name change, removing the R-word from as many government documents and agencies as possible makes a real difference in how thousands of people with disabilities and their families feel about themselves and those charged with helping them," Sarkissian added.

"This has always been a civil right issue for me," said Sannicandro, who is Vice Chair of the Committee on Children, Families, and Persons with Disabilities. "With today's bill signing, we fulfill the promise we made when we changed the name of the Department of Mental Retardation to the Department of Developmental Services; a promise to treat all persons with intellectual disabilities with dignity and respect."

"This important change reflects our commitment to promoting dignity and respect for people with disabilities," Governor Patrick said.

Autism Insurance Reform Signed into Law

On Tuesday, August 3, after months of advocacy from individuals, families, and disability organizations, including The Arc, Governor Patrick signed legislation that requires insurance companies to cover essential medical services for people with Autism Spectrum Disorders. In a ceremony at Fenway Park, Patrick praised the bill, saying he was "proud that Massachusetts now has one of the most comprehensive autism coverage laws in the nation." Patrick also commended the redoubtable efforts of individuals with autism and their families, noting that the success of the bill demonstrated "the way government is supposed to work."

The hundreds gathered in the Fenway stands to celebrate the occasion comprised a wide range of individuals who had contributed to the success of the bill.

"No one should be denied a healthy outcome because of the high cost of services. This is a victory for the courageous families who live with the uncertainty of autism daily," said Senator Frederick E. Berry, who sponsored the bill in the Senate.

Reflecting on the scope of the historic bill, Representative Barbara L'Italien, who sponsored the bill in the House, said, "today we are taking the necessary steps to transform the lives of people throughout the Commonwealth, so that all individuals with autism have access to services and treatment."

"Autism insurance coverage represents a systemic change in how many people with autism in Massachusetts will access critical treatment," said Amy K. Weinstock, Insurance Committee Chair for Advocates for Autism of Massachusetts (AFAM). "We are grateful to the members of our community for their tireless advocacy and for the amazing support of Autism Speaks. Representative L'Italien and Senator Berry, we are incredibly fortunate to have you as our champions. Governor Patrick, thank you for making autism insurance coverage a reality for our families."

The enacted legislation is now a part of the Massachusetts General Laws at

Thursday, July 29, 2010

Students Visit Channel Seven

Our wonderful friend, Dave Kartunen, weekend anchor at Channel 7, invited our students to tour the studios and see the news last weekend. These photos tell the story.

Monday, July 26, 2010

Furniture Painting Day

Painting day started about 10 years ago, when art teacher Randy Wiskow found some chairs at the Thrift store that needed to begin a fresh new life! It has grown into a yearly project. Twice during the summer, all the students are invited to paint 20-30 pieces and paint!  Painting continues throughout the year if we get any unique pieces. Pieces are sold on campus at the CushingTrader, auctioned off at fundraisers, given as gifts to donors and staff leaving and decorate the halls, classrooms and offices throughout our campus! We like to paint chairs the best, as one of the students commented years ago,” just think how many people have sat in this chair, each person has his or her own story, if the chair could talk, what a story it could tell!” Chairs are donated by staff, parents and items that Randy finds on his drive to and from work. In Randy's words, "I think what I like about this project is the smile on the students faces as they give each new piece of furniture a bright, new life!"

Tuesday, July 6, 2010

Savings Plans for Persons with Disabilities

By James Brett
July 5, 2010

As the nation struggles with economic recovery from the recession, government leaders at all levels are making difficult choices to fix budget shortfalls. For those who rely on publicly-funded programs for crucial health and other human services, there is a pressing need to find ways to compensate for any future benefit cuts. The most vulnerable populations, such as people with disabilities, need to plan now for future needs.

Bipartisan legislation pending in Congress, known as the Achieving a Better Life Experience (ABLE) Act, would establish tax-exempt accounts for individuals with a disability to pay certain expenses for education, housing, transportation, employment support, medical care, and certain life necessities. Creation of such accounts, similar to a 529 tax-advantaged plan for higher education, would provide an incentive for and encourage long-range planning. It’s never too soon to plan ahead.

Indeed, projections for the insolvency of Social Security and Medicare already accelerated last year. And paying for these programs is only part of the challenge facing the federal government as unemployment remains high and revenues decline. States, too, are struggling with budget shortfalls.

As a result, many people with disabilities and their families are feeling the impact of the recession. Since 2008, 25 states and the District of Columbia have made cuts to medical, rehabilitative, home care and other services for the elderly and people with disabilities, according to the Center on Budget and Policy Priorities.

There are also about 2 million to 2.4 million elderly or people with disabilities who are on waiting lists and in need of some type of long-term services and supports, noted the National Council on Disability in recent months.

And the need for services is not going to go away when the economy recovers and — perhaps — funding is restored. People are living longer and that includes people with disabilities. Currently there are some 54 million Americans — or 18.7 percent of the population — that have some form of disability, according to the most recent data from the census. Of those, 35 million have a severe disability.

Poverty is more prevalent among people with disabilities, which also underscores the need for publicly-funded support programs. The poverty rate for people with severe disabilities is 27 percent and 12 percent for those with non-severe disabilities. Compare that with 9 percent for people without a disability.

If government funding does not support all of the services needed, then individuals and families will need to find ways to supplement. A qualified disability savings account could be set up in a way that would not exclude the individual from receiving government services, but rather encourage them to save, so that funds could be used to supplement benefits.

The account could be created like other special savings accounts which have been established through the federal tax code, to provide savings vehicles for vacations, college education and emergency spending. Contributions to the qualified disability savings account would not be tax deductible to the contributor. Nor could the account be used as a tax shelter.

But distributions to the beneficiary, and all account interest earnings, would accumulate on a tax-free basis for the benefit of the individual with disabilities. These distributions could be used to pay a third-party service provider for a number of services. For example, funds could be used to supplement transportation, the hiring of an aide to offer one-on-one support, or for eye or dental care that may not be covered by Medicare or Medicaid.

In a time when government agencies are trying to do more with less, it’s hard to predict what level of support will be available in the future. Now more than ever, it is important to encourage families to save what they can.

Parents want the best future for their children. And families of people with disabilities are no different. But to ensure that their children continue to experience the highest quality of life, throughout adulthood, they may need to rely more on public programs. At the same time, they may want to help ensure that the funds are there when their child needs services down the road. Creating an opportunity where parents can save to benefit their child in the future will help them achieve this important goal.

James Brett is chairman of the Governor’s Commission on Intellectual Disability.

Tuesday, June 29, 2010

Where High Expectations Lead You

Fifteen years ago, my son, Jon came home from high school and told me he had bad news, "My teacher, June G. told me that because I have Down syndrome, I can't get my driver's license."  I told him that was not true. If he wanted to get his license, we would help him to study and give him driving lessons. The next thing we did  was to take him out of June's class and  and Marblehead High and the low expectations June and the school had for him. June was a good teacher, but since she was not on the same page as us, she could not teach Jon. You see, we had high expectations for Jon and set the bar just beyond where anyone else thought he could achieve. This wasn't about whether Jon could drive, it was bigger than that.  If Jon wanted to drive, like any other person, he would receive instruction and then he would either pass or fail. That was the natural consequence.  To deny Jon the opportunity, would be to deny his person hood. Down the road, someone could use this thinking to say he couldn't stay by himself, take public transportation or whatever other low expectations people had. So, Jon enrolled at Swampscott High, our neighborhood school, where there were high expectations and  no limits for him. After taking driver's education, he decided that in fact, he was not interested in driving after all.  It was his decision-not June's.
Today Jon, age 31, lives by himself-I mean by himself. No roommates.  Staff assist him a few hours a week. He has a job, friends and is active in his community.
Last night, Jon called. He drove a car.

Monday, June 28, 2010

From Best Buddies


Best Buddies Massachusetts

At the start of 2010 Best Buddies and Cardinal Cushing Centers paired up to introduce the Best Buddies Jobs program to student-aged participants in the vocational program in Hanover. Cardinal Cushing Centers is a non-profit school that works to prepare students with disabilities with an education and vocational training that will allow them to succeed after graduation.

Because of their extensive vocational training, Cardinal Cushing students are prepared to excel in competitive work environments. The goals of the Best Buddies Jobs program and Cardinal Cushing Centers compliment one another and offer exciting opportunities for the students.

Through the Best Buddies Jobs program, five students have been placed in jobs in the Hanover area including Verc Enterprises Briteway Carwash, The Fresh Market, Super Stop & Shop and Cohasset Cycles.

Verc Enterprises is retail convenience store/gasoline station group operating in twenty locations in MA and NH. Most recently Leo Vercollone, President of Verc Enterprises, raised his employee population of people with disabilities to 15%. In March, Verc Enterprises hired two Best Buddies participants from Cardinal Cushing Centers at their Norwell Briteway carwash.

Josh and Brandon, were hired to perform maintenance work around the carwash. Originally, they were responsible for cleaning the vacuums, waiting area and washing the windows. After their first couple weeks, they were excited to be given the opportunity to help the other employees in the carwash tunnel during their “down time” at work. Two months later, Josh and Brandon are enjoying working full time in the “tunnel”, as they call it, power washing the cars before they enter the carwash.

Another Best Buddies Cardinal Cushing participant, Robert, began working at The Fresh Market, a specialty super market in Hingham in March. He is a courtesy clerk bagging groceries and carrying them out to customer’s cars. Robert loves his new position and is striving to reach a goal of moving up to cashier in the next couple months.

Other Best Buddies Cardinal Cushing participants, Michael and Dustin, work at Super Stop & Shop as a bagger and Cohasset Cycles as a bicycle tuner.

Manager of Stop & Shop, Colin Macloud sought out Best Buddies when he knew he had a position to hire for as he was already familiar with the hard working and positive ethics Cardinal Cushing students have.

Bicycling has been Dustin’s favorite hobby for a long time and he spends most of his free time either riding or repairing bikes around Cardinal Cushing. On Dustin’s first day at Cohasset Cycles, owner John Wilkie, had set up a bicycle tuning stand for him and asked him to dive right in. Four bicycles later when asked what Dustin thought of his new position he replied “just another day in paradise.” Best Buddies is thrilled to be working with such a positive student population at Cardinal Cushing.

Wednesday, June 23, 2010

Real Threat to Services In Massachusetts

The Arc and ADDP are glad to announce that Mass. Families Organizing for Change and Mass Advocates Standing Strong are also on board for the Vigil for the Vote...Save the Safety Net
Senator Brown's office is located in the JFK Federal Building, Suite 2400
New Sudbury Street, Boston, MA 02203 (across from Boston City Hall)
Detailed directions are here:
Vigil for the Vote and to Save the Safety Net  
Advocates, Consumers and Family Members  to Hold Vigil  in Scott Brown's Boston Office
Vigil Photo
Unless Scott Brown and his fellow Senators agree to end the GOP filibuster on the Jobs Extender's Bill (H.R. 4213), Massachusetts will lose nearly $700 million in extended FMAP dollars.

This loss will force the Massachusetts budget to be drastically cut, endangering health and human service programs that make up the state's safety net.

Today, more than 50 U.S. senators are set to approve the release of the FMAP funds, but the minority can delay passage by extending debate.  Rules in the Senate require 60 votes to stop debate (cloture).

Massachusetts Senator Scott Brown is one of several key lawmakers who is refusing to vote to end debate and subsequently preventing a vote on FMAP from succeeding in the senate.

We need your help to move the vote, and get the money to Massachusetts.

At this point, there are no other options. So ADDP and the Arc of Massachusetts are joining with four other states to convince Senator Scott Brown and others to "Allow the Vote."
Join the Vigil in Scott Brown's Senate Office

We will hold a daily vigil in his office starting this Thursday, June 24, until the Senate takes action on FMAP.
Activists crowd State house
  • Thursday, June 24
  • Friday, June 25
  • Monday, June 28
  • Tuesday, June 29
We will hold the vigil from
10:00 a.m. until 3:00 p.m. each day.

To join the vigil,  please email, and let her know of your plans to attend.

Leo V. Sarkissian, Executive Director
The Arc of Massachusetts  
217 South St.                   (781) 891-6270, xt. 106
Waltham, Ma 02453          (781) 891-6271 (fax) 
The Arc of Massachusetts’ mission is to enhance the lives of individuals with intellectual and developmental disabilities and their families. We accomplish this through advocacy of supports and services based in the community.

Tuesday, June 15, 2010

Thought you Would Want to Know

Disability Stats and Facts

·        People with disabilities constitute the nation's largest minority group, and the only group any of us can become a member of at any time.
·        Between 1990 and 2000, the number of Americans with disabilities increased 25 percent, outpacing any other subgroup of the U.S. population.
·        People with disabilities represent the single largest minority group seeking employment in today's marketplace.
·        Of the 69.6 million families in the United States, more than 20 million have at least one family member with a disability.
·        According to the U.S. Department of Education, workers with disabilities are rated consistently as average or above average in performance, quality and quantity of work, flexibility, and attendance.
·        Over 65 percent of working-age adults with disabilities are unemployed. Of these working adults, nearly one third earn an income below the poverty level.
·        People with disabilities are nearly twice as likely as people without disabilities to have an annual household income of $15,000 or less.
·        The unemployment rate of people with disabilities is ten times greater than the national unemployment rate, yet many of those unemployed individuals have the skills you need.
·        1 billion people globally report having a disability, and people with disabilities in the U.S. control aggregate annual income of > $1 trillion
·        2.3 million undergrad & grad students reported disabilities in 2004, more than double the 1.1 million reported in 1996
·        The employment rate for people with disabilities was 38.1% in 2005, roughly half of that for people without disabilities
·        There are 133 million people in the United States living with a chronic health condition. That number is expected to increase by more than one percent a year to 150 million by 2030. 75 percent of people with chronic health conditions are younger than 65
·        Globally, people with disabilities represent an emerging market on par with the size of China
·        Approximately 54 million Americans have at least one disability, making them the largest minority group in the nation. As our baby boomer population ages and more veterans return from war, this number will double in the next 20 years.
·        Notwithstanding the strides made in disability rights in the past 25 years, the majority of people with disabilities are poor, under-employed and under-educated due largely to unequal opportunities. People with disabilities constitute the largest minority group in the United States, making up an estimated 20 percent of the total population. It is a diverse group, crossing lines of age, ethnicity, gender, race, sexual orientation and socioeconomic status.
·        We all have a personal stake in this community: it is open to anyone who might experience an accident, illness, genetic difference or the effects of aging. And yet, the Foundation Center reports that out of over 3 billion dollars spent in philanthropic giving, only 2.9 percent of grants made by institutionalized philanthropy are directed to programs serving people with disabilities.
·        Disability Inclusive Grantmaking is the mission of DFN: inclusion of disability in grantmaking programs and inclusion of people with disabilities in grantmaking organizations.
·        Disability belongs in any grantmaking program that supports diversity. Or education. Or employment. Or housing. Or civic participation, arts and culture, technology, health care or any other element of life. The interests and needs of people with disabilities mirror those of other groups.
·        Disability Funders Network, or DFN, was established in 1994 to be a catalyst for creating a new understanding of how funders can respond to disability issues and promote awareness, support and inclusion of people with disabilities and disability issues in grantmaking programs and organizations.
·        By broadening the definition and understanding of disability, grantmakers can be more responsive to the full range of issues affecting the country's largest minority group
·        According to the Social Security Disability Resource Center (SSDRC), more than 50 million Americans have some level of disability. Of these individuals, 44 percent have a disability that is not considered severe and are able to work year round on a full-time basis. Of the total number, 80 percent are individuals who are 80 years of age or older. Additionally, among the 51.2 million Americans with disabilities are 1 million individuals who report they are unable to hear and 1.8 million individuals who report they are unable to see. (source: U.S. census data released May 2006; read the full news release)
·        For more than a third of individuals with disabilities, assistive technology is essential to being able to take care of themselves at home. (source: 2004 Harris Poll)
·        Disability rates vary among the major racial and ethnic groups (source: U.S. Census 2000):
o   African-American and American Indian/Alaska native persons report the highest rate of disability, at 24.3 percent for each group.
o   Asians reported the lowest rate of disability, 16.6 percent.
·        Disability rates vary geographically, as well (source: U.S. Census 2000):
o   Nearly 40 percent of persons reporting a disability live in the South - twice the 20 percent of each of the other three geographic areas. Persons living in Alaska, Utah and Minnesota each reported the lowest rates of disability, about 15 percent. Persons living in West Virginia reported the highest rate of disability, at 24.4 percent, followed by Alabama, Arkansas, Kentucky and Mississippi, each over 23 percent.
·        Of the 49.7 million noninstitutionalized individuals aged five and older who reported having a disability in the U.S. 2000 Census (source: U.S. Census 2000)
o   9.3 million reported having a sensory disability involving sight or hearing.
o   21.2 million reported having a disability that limits their ability to engage in basic physical activity such as walking, climbing stairs, reaching, lifting or carrying.
o   12.4 million reported having a physical, mental or emotional condition that makes it difficult to learn, remember or concentrate.
o   6.8 million reported a physical, mental or emotional condition that makes it difficult to dress, bathe or get around inside the home.
o   18.2 million reported their disability makes it difficult to venture outside the home.
·        Census 2000 data on disability:
·        August 2004 NOD/Harris Poll data:
o   Key indicators: in Word format and PDF format.
o   Detailed results: in Word format and PDF format.
o   Presentation by Humphrey Taylor, chairman, Harris Interactive: in PowerPoint format and PDF format.