We Have Come so Far …. Ann Coulter Notwithstanding

Whenever I see an old Seinfeld episode where Jerry is using one of the first portable phones, it reminds me of how many changes I have seen in my adult life. Those bulky phones now seem primitive. In reality, it wasn’t too long ago when they looked pretty impressive. Now we are walking around with phones the size of a deck of cards that also double as computers.

These thoughts also remind me of the positive changes I have seen in the disability world. We can argue the decision to hire an able-bodied actor to portray the Glee character who uses a wheelchair. But we have to celebrate the producers’ use of Lauren Potter, an actor with Down syndrome, to portray Becky, one of the hit show’s cheerleaders. And it was the decision to hire a 50- year-old actor with Down syndrome to portray Sue Sylvester’s older sister that I celebrated most. Her character died in the second season, but the storyline was realistic. The life expectancy of persons with Down is now close to 60 years old but only a few decades ago it was 20.

Having depicted both a teen and an older adult with disabilities, Glee is bringing another generation of actors into the storyline. Last season ended with Sue revealing her pregnancy, and this season we have learned that baby Robin—named for the actress who played Sue’s sister—also has Down syndrome. While we all wait to see exactly how this will be played out, I took a moment to celebrate how disability is finally being seen as just a part of humanity.

My moment of celebration was cut short when I read about commentator Ann Coulter's recent description of President Obama as a "retard." Despite an outcry from people with disabilities and others, she said she was not sorry for her use of the “R” word.

Coulter defended this with an irrational logic: she claimed the word is synonymous with the word "loser." But that is the whole point… The high school kid who yelled "here comes the retard" as I drove my son to school was calling him a "loser." That is exactly how that kid wanted my son to feel.

So I can’t fully enjoy the progress we have made with Glee, because there are still those like Ann Coulter who just don’t get that the world has changed.

First appeared as a Ruderman Family Foundation blog

Sticks and Stones May Break Your Bones But Words Will Never Hurt You

Most of us have heard this saying during our childhood but, it took the student speaker at the graduation of the Cardinal Cushing Centers to really bring into the focus how far it misses the mark. Last month, Erik, began his graduation speech with the usual list of thanks and gratitude but, then he said: “People say that sticks and stones may break your bones, but words will never hurt you. People are wrong. Words do hurt.” Ask any one of our students or adults or their families what they think of the word “retarded” or “retard” and they will tell you.


They hurt. What I can’t understand is why we continue to use words after we have been told they hurt.

Special Olympics, Best Buddies and over 200 other organizations from around the world have joined together to Spread the Word to End the Word™ and build awareness for society to stop and think about its’ use of the R-word. That R-word is something hurtful and painful – “retard” or “retarded.” Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual and developmental disabilities, their families and friends. The R-word is just as cruel and offensive as any other slur.

Please join me in raising the consciousness of society and the dehumanizing and hurtful effects of the "R" word and pledge to stop using the word. Please visit http://www.r-word.org/ to take the pledge today to spread the word to end the word.  I did.

PS-Enjoy this slide show of graduation by clicking the link below:

http://www.patriotledger.com/features/x2067832439/Cardinal-Cushing-graduates-expressed-their-joy-in-Hanover

New York’s Justice Center for the Protection of People with Special Needs: A Different Perspective

Congratulations are in order for New York’s Governor Andrew Cuomo, who recently announced sweeping legislation to create the Justice Center for the Protection of People with Special Needs, which would investigate and prosecute allegations of abuse and neglect against people with intellectual disabilities. The Center will have broad powers to independently investigate private and public facilities that receive funding from the state. It will be the largest agency in the country established to protect people with disabilities. This is in response to the widespread reporting of abuse, deaths and even homicides throughout the service system in New York.

While this news was positively received by advocates for people with disabilities, I viewed it from slightly different perspectives.

First of all, why did it take rampant abuse and even death for New York to come to the aid of persons with disabilities being systematically abused? No other minority group would have had to wait as long as people with disabilities in New York are waiting for legal protections. Other states have been quicker to establish these kinds of safeguards.

The press releases emphasized the size of the new structure and while, as a Bostonian, you might accuse me of criticizing everything New York, it is the quality and effectiveness which will be important to me. Not the bragging rights of the biggest.

From what I can tell, only those programs and facilities that receive state funding will come under the scrutiny of this new Center. If we are serious about eliminating abuse against people with disabilities, we must hold entire communities to the same standards. While the assumption seems to be that caretakers are the only ones that abuse people with disabilities, facts and police reports tell a different story — families and friends can abuse, too.

Investigation and prosecution are important tools but, if we want to protect people with intellectual disabilities, we must prevent abuse from occurring. This will only happen when people with disabilities are truly equal members of our communities who live, work, play and pray with us.

Originally published on the Ruderman Family Foundation website

When Labels Fail-The Ongoing Debate in Autism

Not a week goes by before there is a new article about the increase in the rates of autism and within these reports is a debate about what it means. There are generally two camps, as I see it: those who believe better detection and a broadening of the definition of autism is at work and those who believe there are some unknown environmental factors in play. While there is a genetic component to autism, I fall into the first camp.


Until the 1990’s, when the definition of autism was broadened, only the more involved children were labeled as having autism and the rest received various other labels-PDD, PDD/NOS, MR and an alphabet soup of other labels. It was widely accepted that a label of autism also included some level of intellectual disability. Now, only 1/3 of those who are labeled as having autism also have an intellectual disability.

There are lists even being developed of famous people and much speculation of others (Steve Jobs for example) who might have Asperger’s. What concerns me and should concern you is why are we obsessed with labels? I used to have a poster on my wall that said “Label jars. Not people.” I think we should accept some natural variations of human behavior. That quirky kid from my elementary school who went to MIT would no doubt today be put somewhere on the autism spectrum and provided with social skills classes. Instead of being celebrated for who he is, he would be set apart and attempts would be made to fix him.

When we finally have societies where everyone is included and accepted for their uniqueness, I am hopeful that labels will only be on jars.

This blog was oringianly published on the blog Zeh Lezeh

Growth on horizon at Cardinal Cushing Centers

 By Neil Simpson/Patriot Ledger
HANOVER — With a few minutes until closing, 21-year-old Erick Conroy rushes with his co-workers through the Iron Kettle Inn to clear dishes from the lunch rush. Nearby, other young workers sort donations in a thrift store and work the register at a bakery.

The little-known collection of shops off Route 53 is staffed almost entirely by students with intellectual disabilities at the Cardinal Cushing Centers and serves as a training ground for many of them to enter the adult work force. For Conroy, the experience working at the Iron Kettle led to a job busing tables at Bertucci’s in Hingham.

“I like busing, but I’m working my way up to waiting,” he said confidently as he paused during his work at the Iron Kettle.

In addition to typical classrooms and athletic facilities, the campus includes 150 units of affordable housing and a marketplace of shops open to the public, including the Bass Village Café, the Cushing Greenery nursery and the Timeless Treasurers thrift shop.

Now, after 65 years, leaders at Cardinal Cushing Centers are preparing to launch projects aimed at opening the 40-acre campus to more people outside the school. New plans call for adding 48 units of affordable housing at the center of the property and a new building that will move the school’s retail shops – including a bakery, restaurant, thrift store, gift shop and recycling center – to a more visible location on Route 53.

“The future is really about transformation from a traditional residential school for kids with disabilities into a community, a village, for people of all ages and all abilities to live, work, play and pray together,” said Jo Ann Simons, the organization’s president and CEO.

Cardinal Cushing Centers was founded in 1947 by Cardinal Richard Cushing, who saw a need for a school that would serve what he called “exceptional” children. At the time, Simons said, few children with intellectual disabilities were educated, and many were institutionalized.

Since then, state and federal laws have been rewritten to guarantee that all students with intellectual disabilities receive access to an education, and public schools have developed programs to serve many of them. As competition among special-education programs has grown, the Cushing Center has worked to carve out a niche serving those students who need the 24-hour structure of a residential program, while also providing vocational training for older students preparing to enter the adult world.

Today, the organization serves 80 residential students and 40 day students at its Hanover campus, 24 day students at St. Coletta Day School in Braintree and about 150 adults supported through various programs. Students start as young as 6 and range from those with mild learning disabilities to students considered nonverbal.

With a few minutes until closing, 21-year-old Erick Conroy rushes with his co-workers through the Iron Kettle Inn to clear dishes from the lunch rush. Nearby, other young workers sort donations in a thrift store and work the register at a bakery.

The little-known collection of shops off Route 53 is staffed almost entirely by students with intellectual disabilities at the Cardinal Cushing Centers and serves as a training ground for many of them to enter the adult work force. For Conroy, the experience working at the Iron Kettle led to a job busing tables at Bertucci’s in Hingham.

“I like busing, but I’m working my way up to waiting,” he said confidently as he paused during his work at the Iron Kettle.

In addition to typical classrooms and athletic facilities, the campus includes 150 units of affordable housing and a marketplace of shops open to the public, including the Bass Village Café, the Cushing Greenery nursery and the Timeless Treasurers thrift shop.

Now, after 65 years, leaders at Cardinal Cushing Centers are preparing to launch projects aimed at opening the 40-acre campus to more people outside the school. New plans call for adding 48 units of affordable housing at the center of the property and a new building that will move the school’s retail shops – including a bakery, restaurant, thrift store, gift shop and recycling center – to a more visible location on Route 53.

“The future is really about transformation from a traditional residential school for kids with disabilities into a community, a village, for people of all ages and all abilities to live, work, play and pray together,” said Jo Ann Simons, the organization’s president and CEO.

Cardinal Cushing Centers was founded in 1947 by Cardinal Richard Cushing, who saw a need for a school that would serve what he called “exceptional” children. At the time, Simons said, few children with intellectual disabilities were educated, and many were institutionalized.

Since then, state and federal laws have been rewritten to guarantee that all students with intellectual disabilities receive access to an education, and public schools have developed programs to serve many of them. As competition among special-education programs has grown, the Cushing Center has worked to carve out a niche serving those students who need the 24-hour structure of a residential program, while also providing vocational training for older students preparing to enter the adult world.

Today, the organization serves 80 residential students and 40 day students at its Hanover campus, 24 day students at St. Coletta Day School in Braintree and about 150 adults supported through various programs. Students start as young as 6 and range from those with mild learning disabilities to students considered nonverbal.

Simons said that having a campus where “typical” people live and interact alongside students is key to the school’s evolving mission, giving its students the experience they need to leave the often-sheltered world of special education.

“By living in this community, they’re going to be much more comfortable living among people who are not paid to be around them,” she said. “People with disabilities are constantly surrounded by people who are paid to be around them.”

Under a master plan developed over the last 18 months, the center would partner with the Planning Office of Urban Affairs to transform an outdated office and classroom building into 48 affordable-housing units. The 150-unit apartment building already on the property is for low-income seniors and was recently sold for about $8 million.

The plans also call for a multi-story building facing Route 53 with ground-floor retail space to house many of the center’s current vocational programs and some new ones. Simons said the school’s leaders hope to break ground on both projects within the next three years.

The initiatives come after several years in which the school struggled with falling enrollment, growing debt, and layoffs and pay freezes that Simons described as “very painful.” But Simons said the school has recently increased enrollment, reduced its deficit and put its finances “on a better course.”

“These difficult times give us an opportunity to be very clear, and direct and thorough about where we’re going, and to make sure, not only that we’re relevant today, but that we are building something that will stand the test of time,” she said.

Neal Simpson may be reached at nesimpson@ledger.com.

A Parent’s Worst Fear: When Down Syndrome Leads to Alzheimer’s

Sometimes days go by and even weeks when I do not think about it.

However, it was a Sunday, an ordinary day, when I was forced to think about it. Dorothy called me. I knew Dorothy from a previous position I held in the disability world. She and her husband are devoted parents to Cheryl, who has Down syndrome. Dorothy and her husband forged a path of inclusion for Cheryl that allowed many of us to follow. Defying the conventional wisdom of the day, without Federal or state laws as protection, Cheryl was included in all aspects of life. She now lives independently and until recently, was competitively employed.

Immediately, I knew why Dorothy was calling. Call it a sixth sense or just call it knowledge. Cheryl had been diagnosed with the beginning of Alzheimer’s, an almost inevitable diagnosis for adults with Down syndrome.

Advances in medicine have extended the life span of persons with Down syndrome and also the real possibility of Alzheimer’s. There is an indisputable link between Down syndrome and Alzheimer’s. Anybody with Down syndrome, if they live long enough, will eventually develop this disease.

That afternoon, I found myself listening to this mother, herself in her 80’s, trying to make decisions to help Cheryl on this next part of her life’s journey. Her struggle was how to continue to support Cheryl to live independently and make sure she was safe and receiving the health supports she now needs. It was the same kind of decision many children have to face with their elderly parents: do we unplug the stove, when do we alarm the doors, how do we tell someone who is proud and independent that they can no longer live by themselves? How do you do this to a person who has fought society’s low expectations for over a half century?

Jon and me

You do it with grace. And with my thanks for showing me how I might do it. My son is 32 and he has Down syndrome and this is the future that awaits him.

Unless we find a cure.

-- Jo Ann Simons

Originally published on the Ruderman Family Foundation blog.

Disabilities Discrimination: Against the Law But All Too Real

Another of my blogs which was originally published on the Ruderman Family Foundation's website:

I recently attended a breakfast where Congressman Stephen Lynch of Massachusetts was the speaker. He shared with us that he had been to Iraq many times in the past few years and on this occasion was meeting with various government ministers. At one point, one of the ministers said to him, “Excuse me, Congressman. I feel betrayed by the United States government. You never told us how hard democracy is.”


While the Iraqi people are learning how hard democracy is, we are willing to invest our money and the lives of our sons and daughter into a cause which we believe is just and right. It is also absolutely necessary for our civilization to progress.

I would like to suggest that the same can be said for the inclusion of persons with disabilities. While the Americans with Disabilities Act and other legislation makes it unlawful to discriminate against persons with disabilities, discrimination exists every time a person with a disability in excluded from loving, learning, working or playing.

Democracy-loving people, wherever it the world they live, should be demanding a society where every member is valued and has equal access to its opportunities. Inclusion is hard work but lives do not have to be sacrificed to create a just world.

Our civilization depends on it.

Our Values

Another blog of mine from the Ruderman Family Foundation blog

By Jo Ann Simons, Ruderman Family Foundation Disabilities Advisor and CEO Cardinal Cushing Centers

Hardly noticed until Time Magazine reported on it recently, is the availability, for expectant mothers to learn with almost 100% certainty and accuracy whether their unborn child will have Down syndrome. The simple blood test is performed at 10 weeks of pregnancy and checks for the presence of markers for the extra chromosomal material that causes Down syndrome. Expectant mothers have already been given this simple blood test and the test has been administered without one essential aspect: accurate information about the joys and challenges of having a child with Down syndrome.

In a society that values perfection, these tests have been developed and are presently offered with a built-in bias against people with disabilities. For now, the test identifies Down syndrome, a genetic condition with which I have much experience. It will not be too long when the same simple blood test will be able to screen for other conditions like Alzheimer’s, breast cancer and schizophrenia. Can you imagine if we were robbed of the contributions that people with these conditions have made?

We already have too much experience with the horrific outcomes when humans think they can decide who is worthy of life. We should all be very worried that this test will surely lead to the rapid decline in the number of people with Down syndrome and then we will take this knowledge and apply it to other conditions. While it may not be as easy to point to people with Down syndrome and their contributions to our society, I can tell you about the contributions of my son, Jonathan, to my world and to the world of every single person he encounters. He breaks stereotypes and long-held beliefs about people with disabilities and, in doing so, he has single-handedly made the world a better place.

When he volunteers at the Boys and Girls Club, Jonathan becomes a contributor. When he files his taxes, Jonathan becomes responsible. When he accompanied his confirmation class to the Holocaust Museum and announced to the assembled group of typical students and religious school teachers that the Nazi’s “killed kids like me,” Jonathan became the teacher.

Some people may say that he suffers from having Down syndrome and some of the medical conditions that accompany it. I can tell you this — Jonathan does suffer. This year he suffered as he watched his beloved Red Sox crumble in September and crush his hopes for a post season and he still suffering from the New England Patriots Super Bowl loss. Just like millions of other fans, he is just now beginning to be able to talk about it.

On any day, however, he will tell you that he loves his life. Is there any other reason to be?

– Jo Ann Simons

Turning 21: Bittersweet Birthday for Young Adults with Disabilities

I occassionally blog for the Ruderman Family Foundation and this is my latest  blog:

In a recent Boston Globe column, (January 29), Joan Vennochi brought us the story of James Nadworny, a young man with Down syndrome, who recently celebrated his 21st birthday. While it was undoubtedly a wonderful occasion, it would bring him and his devoted family closer to the day when he turns 22, a milestone, to paraphrase Don McLean, when “the music died.”


In Massachusetts and in most states, people with disabilities and their families have been “happy for a while.” People like James and my son, Jon, through the age of 22, are guaranteed an education but, unlike the majority of special education students, who will go on to college or careers, our children need additional supports to achieve the dreams and hopes we have for them.

“Bad news is on the doorsteps” because our children are entitled to nothing after their education ends. Continuation of support depends entirely on the state budget process. The support that individuals with significant disabilities need to be successful is not adequately funded and the funding gets tougher every year.

I know. I have been advocating on behalf of persons with disabilities for over 30 years. I know our State House too well and I get tired of begging for a society to see the worth of our children and adequately fund the services they need and to pay the dedicated staff who work with them a living wage.

My son was lucky. He is 32 and when he turned 22, the economy was stronger and the political will to provide him the supports he needed was stronger. As a result, he received the support he needed to work and live independently.

James is turning 22 in the worst possible economic time and the hopes of his family, for him to live a full, productive and meaningful life, should be the hope all of us has for James.

VERC Enterprises Shows Us the way

 

 

Over 20% of VERC Enterprises workforce are people with intellectual disabilities and according to CEO Leo Vercollone (pictured here with me and one of his employees at a recent recognition event at Cardinal Cushing Centers) and it has kept his 24 convenience stores/gas station and car washes ahead of the competition. In an industry with 100% turnover, his company has a 40% rate. The difference are... people with intellectual disabilities. He spoke of a culture created at his company through hiring individuals with intellectual disabilities. In the face of stiff competition, he wanted to create a store culture that is happy, fun, inclusive and caring. The key to creating that culture is the over 20% of his workforce who have intellectual disabilities. His employees say work is more fun. His customers find the practice socially responsible and he he describes these employees as committed and hardworking. Three cheers for VERC!!!

How do we get the word out that people with intellectual disabilities are an asset in the workplace??

Vercollone is keynote speaker at Cushing Centers breakfast

Vercollone is keynote speaker at Cushing Centers breakfast

Cushing Centers volunteers a real plus at Hanover COA

Cushing Centers volunteers a real plus at Hanover COA

Cardinal Cushing Centers' Simons wins book award

Cardinal Cushing Centers' Simons wins book award

Collaboratives try to Distract the Legislature by Focusing on C766 Schools.

Thank you to Larry Sauer, Guest Blogger

Vice President for Student Program and Services

Cardinal Cushing Centers

In recent months Educational Collaboratives have been under a great deal of scrutiny because a few collaborative directors have taken advantage of the lack of regulation and financial accountability to enrich themselves at the expense of special education students. Like our Chapter 766 schools, Cardinal Cushing School and St. Coletta’s Day School, Educational Collaboratives serve school districts by providing special education services to low incident populations as well as provide districts with a variety of other services including transportation, IT services, and Medicaid Reimbursement services. Unlike our schools, Educational Collaboratives have been largely unregulated and financially unaccountable.

The concerns uncovered by the State Auditor’s Office at the Merrimac Educational Collaborative and a few other collaboratives have brought this lack of regulation and accountability to the attention of the legislature and they are in the process of taking action to increase regulations and accountability for the collaboratives. Senate Bill 2101, which will be taken up in the Senate today is intended to address the recent scandal involving the alleged misuse of millions of taxpayer dollars by officials of the Merrimack Education Collaborative. The bill will provide badly needed oversight of the governance and financial activities of education collaboratives to assure public accountability and transparency.

Unfortunately, the collaboratives are fighting back against these efforts by trying to shift the legislature’s focus away from the collaboratives and on to schools like ours. Two proposed amendments, 13 and 14 to Senate 2101 are stacked against C766 schools like ours. The proposed amendments seek to direct attention away from the lack of accountability in education collaboratives and, instead, conduct reviews of C766 schools by commissions dominated by education collaboratives and public schools.

There are a number of problems with the proposed amendments:

• Amendment 13 calls for a study of the effectiveness of C766 schools, collaboratives and public schools by a commission dominated by collaboratives and public schools, but with not one representative from C766 schools.

• Amendment 14 calls for a review of the tuition setting process and salaries in C766 schools by a different commission with 14 members – and only one representative from C766 schools.

• Amendment 14 calls for the commission to obtain input from groups ranging from education collaboratives and human service providers – but not from C766 schools.

We urge you and all families, school staff, Boards of Directors, and advocates to call your State Senator today to ask them not to support amendments 13 and 14 to Senate bill 2101 sponsored by Senator’s Tarr and Baddour.