Tag Archives: disabilities

An Interview With Michael Stein

I had the pleasure of interviewing Harvard Professor Michael Stein about a wide range of issues affecting people with disabilities. Professor Stein is an internationally recognized expert on disability rights, who participated in the drafting of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and actively consults with international governments on their disability laws and policies.

Below is part one of the interview. Part two will appear on the blog very soon.
– Ephraim Gopin

Michael Stein1) How well is the Americans with Disabilities Act (ADA) being implemented?

The ADA has been a mixed bag. It’s been extraordinarily successful in creating access to public places and public accommodation, but it’s been extraordinarily unsuccessful in affecting employment.

According to many studies, the ADA has had a major effect as far as making the public areas a place where people with and without disabilities can come and go at their leisure and more accessible for people with disabilities. It has improved the quality of people’s lives immeasurably.

As far as employment, we’ve seen a consistent decrease in employment and holding since well before the ADA. It was hoped that the ADA would improve the employment situation but it has not. (Michael has studied disability employment in the US for over 25 years and around the world. A book on this topic will be coming out next month.)

2) What’s the most jarring finding you have found from your studies?

Almost 80% of working age adults with disabilities are unemployed. When the overall unemployment rate reached 9%, it was considered a matter of great public attention and almost a national crisis. But yet the national disability unemployment rate has never been lower than 66% and over the last few years it has held steady at nearly at 80%. The fact that it doesn’t raise the same sort of red flags and calls to action is concerning.

3) Is the UN Convention on the Rights of Persons with Disabilities (CRPD) really a game changer? If yes, how so?

I view the CRPD as a remarkable tool that can be used to leverage change. It ultimately depends on local civil societies and how they use the tools. We see it as a lever on a national level for the creation of progressive and inclusive laws, policies and programming.

michael stein II

Picture courtesy of: http://b.globe.com/1gDj4y6

On an international level we see it being very effective in how the UN approaches disabilities. We’re seeing donor organizations now changing their guidelines to be inclusive- not as special projects but included in all the projects they’re doing bilaterally. On the individual national level- it really depends on the social and legal culture, what the alternatives are and how active the civil society is, which shows how conducive government is to change. In some places, I’ve been told by ministers that they will not change their policies. In other places, it’s been a wake-up call, it’s been an educational device and policy makers have begun to think how to approach differently almost invariably their largest minority group.

Is it a game- changer? At the end of the day, it depends how active civil society is and how well they pair with non-disability sectors to find areas of common interest and team up with them on projects.

4) The state of technology for people with disabilities- passing grade? Are apps made with people with disabilities in mind? If not, that’s a huge population to not serve.

Globally, new technology has in some areas embraced inclusion. The technology is certainly there to make all these apps accessible. The technology is cheap and incredibly easy to implement. But by and large, the needs and rights of people with disability are not taken into account.

It’s frustrating- I hear the anger and exclusion from many friends and different groups. Especially because this is a new world created by supposedly young, savvy, cosmopolitan people who have no excuse for excluding people with disabilities. To embed barriers into new structures seems to me to be a lost opportunity as well as a harmful and avoidable phenomenon.

Big businesses are by & large aware of it and some are more savvy than others. Microsoft has been rather good on accessibility. Amazon, on the other hand, has been obnoxious on the issue. For example, Amazon has been approached time and again about the Kindle but refuses to make it accessible.

5) Employment discrimination: Do you believe that people with disabilities face barriers to finding a job?

Empirical evidence from all over the globe suggests there’s a real disconnect policy-wise when we think about people with disabilities and the workplace. In terms of Western notions, people are viewed either as work capable or disabled; if they’re disabled, then they’re not meant to be working.  We don’t think enough about people’s different abilities, how to cultivate those abilities, getting them integrated into the workplace, why work is valuable especially when it comes to interacting with other people.

Michael Stein holds a J.D. from Harvard Law School and a Ph.D. from Cambridge University and is the Co-founder and Executive Director of the Harvard Law School Project on Disability. An internationally acclaimed expert on disability law and policy, Stein participated in the drafting of the United Nations Convention on the Rights of Persons with Disabilities, works with disabled persons organizations around the world, actively consults with international governments on their disability laws and policies, and advises a number of United Nations bodies.

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The Right To Choose: A Lesson From The Maccabees

Rabbi Michael LevyBy: Rabbi Michael Levy

When Alexander the Great conquered Jerusalem in 332 BCE, he permitted the Jews to continue traditional worship and rituals in the Holy Temple. The Jews honored him by naming some of their children “Alexander.”  (It would please Alexander that a legendary Jewish baseball pitcher bears a derivative of his name: Sandy.)

Some of Alexander’s successors were despotic rulers. Nevertheless, as long as they granted Jews the right to freely practice their religion, the Jews tolerated them. But Antiochus Epiphanes, believing that he could strengthen his kingdom by instituting pagan worship in the Temple and throughout Israel, banned traditional Jewish worship and rituals.  His “no choice” edicts sparked the Maccabees’ successful rebellion, commemorated on Chanukah.

After the Maccabees’ victory, their leader Simon decreed that the non-Jewish Idumeans either convert to Judaism or leave Israel. His bickering successors also forgot about choice, concentrating instead on accumulating wealth and power. One faction allied itself with Rome, hastening the demise of the Maccabean dynasty

The Chanukah liturgy scarcely mentions individual Maccabees, perhaps because their descendants failed to preserve freedom. Chanukah prayers focus instead on God championing Israel’s cause, enabling the faithful to purify and rededicate the Temple.

Choices for People with Disabilities

The Maccabees’ rise and downfall teach us that those who achieve freedom must ensure that citizens retain the right to make meaningful choices. Now that we with disabilities are gaining freedom to participate fully in society, it’s crucial that we, to the greatest extent possible, choose our own paths to inclusion.

Courtesy of Sandee Brawarski, NY Jewish Week

Courtesy of Sandee Brawarski, NY Jewish Week

There are still professionals, parents and people with disabilities who say “let the experts make the decisions.” Sometimes, people “labeled” with a particular condition or disorder are steered towards others who share that label. While input from educators and doctors is invaluable, a person is much more than the sum of his test results and diagnoses.

Decision-making should start early. The developmentally delayed child who never chooses the red dress or the green dress may later struggle to decide when it’s safe to cross the street.

Disability-related decisions should be based on accurate information, knowledge of “best practices” in synagogues and communities, awareness of financial and technology resources, input from experienced people with disabilities and the principle that the person, not the disability, is primary.

Choices on the Path to Inclusion

Some of us, conscious of the stigma still associated with disability, choose to hide what makes us different.

Others prefer the label “special needs individuals.” “Special” can be misinterpreted to mean that those in this category aren’t expected to follow rules and assume responsibilities like their “non-special” counterparts.

Still others, myself among them, believe that disability itself doesn’t prevent full participation in society. Rather, attitudinal, architectural, communications and transportation barriers keep us from integrating fully into our communities.  We must work together to eliminate or minimize those barriers.

May God crown our victories with the wisdom to maximize the choices of those for whom we advocate.

A native of Bradley Beach, New Jersey, Rabbi Michael Levy attributes his achievements to God’s beneficence and to his courageous parents. His parents supported him as he explored his small home town, visited Israel and later studied at Hebrew University, journeyed towards more observant Judaism, received rabbinic ordination, obtained a master’s degree in social work from Columbia University and lectured on Torah- and disability-related topics.

As a founding member of Yad Hachazakah — the Jewish Disability Empowerment Center, Rabbi Levy strives to make the Jewish experience and Jewish texts accessible to Jews with disabilities. In lectures at Jewish camps, synagogues and educational institutions, he cites Nachshon, who according to tradition boldly took the plunge into the Red Sea even before it miraculously parted. Rabbi Levy elaborates, “We who have disabilities should be Nachshons –boldly taking the plunge into the Jewish experience, supported by laws and lore that mandate our participation.” He also  writes a weekly “disability blog.”

Rabbi Levy is currently director of Travel Training at MTA New York City Transit. He is an active member of Congregation Aish Kodesh in Woodmere, NY. He invites anyone who has disability-related questions to e-mail him at info@yadempowers.org

Please note: There will be no post on Thursday due to the holiday of Thanksgiving.
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Fifty Years Later: JFK’s Lasting Legacy

President Kennedy, 1963: “It was said, in an earlier age, that the mind of a man is a far country which can neither be approached nor explored. But, today, under present conditions of scientific achievement, it will be possible for a nation as rich in human and material resources as ours to make the remote reaches of the mind accessible. The mentally ill and the mentally retarded need no longer be alien to our affections or beyond the help of our communities.”

(Editor’s note: Although the language we use has changed, the hope expressed by President Kennedy remains the same)

simonsJo Ann Simons is a Disability Advisor to the Ruderman Family Foundation and President and CEO of the Cardinal Cushing Centers. She remarked: “As we all have been reminded over and over again about the great national tragedy that our nation endured when President Kennedy was assassinated, I noticed a Facebook entry from Anthony Shriver, the President’s nephew. He wrote about his uncle’s call to service and the great accomplishments of his short presidency in the area of disability. I thought Anthony’s message was one that should be spread and applied to the work we do at the Cardinal Cushing Centers.”

Below is the message Jo Ann sent her staff yesterday…

Staff,

Tomorrow marks the 50th anniversary of the death of President John F. Kennedy. While the media will concentrate on the tragedy and what might have been, I will be using the day to reflect upon one of his gifts to the world. President Kennedy ushered in the age of inclusion and acceptance for persons with intellectual disabilities.

Here at the Cardinal Cushing Centers, we bore witness to his future legacy when, in 1957, then Senator Kennedy dedicated Kennedy Hall in memory of his brother, Joseph P. Kennedy, Jr. This building was made possible by the generous $400,000 gift from the Kennedy Foundation.

As President, Kennedy signed the first major U.S. legislation to help people with intellectual disabilities at a time when individuals with ID were routinely institutionalized and locked away.

WH/HO Portrait

Photo courtesy of: http://bit.ly/1jrZEce

Inspired by the challenges in the life of his sister Rosemary, President Kennedy became a pioneering advocate for people with disabilities. He was the first president to welcome a person with intellectual and developmental disability in to the White House. Fueled by the passion of his sister, Eunice Kennedy Shriver, he established a President’s Panel on Mental Retardation. Within the National Institute of Health, he created what would become the Eunice Kennedy Shriver Institute of Child Health and Human Development. And he supported Mrs. Shriver’s  creation of Special Olympics. In the years following the Kennedy administration, Congress passed 116 acts or amendments providing support for people with intellectual disabilities and their families.

Tomorrow, I will remember exactly where I was on that tragic day but, I also will remember where we are today because President Kennedy dared to be bold. And thankful to all of you for choosing to continue part of his legacy.

I am grateful.

Jo Ann

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Ten Steps To Make Your Congregation More Inclusive, Part III

Lisa FriedmanBy: Lisa Friedman

We thank Lisa for this three part series on making congregations more inclusive. We encourage you to read part one and part two and then continue reading below.

One of the greatest mistakes I have seen congregations make is to bring together an amazing group of committed lay leaders and professionals who meet frequently to develop a vision and goals and then create a plan to bring to the community at large.  Yet, despite all good intentions, there is only a small group of people who are “in the know”.  This lack of transparency frequently dooms an initiative before it ever gets off the ground.

So Step 7 in my “10 Steps to Make Your Congregation More Inclusive” is:

Share

Let the congregation know about your efforts.  Changing a culture requires transparency and support; keeping your work a “secret” until a program or an event is “ready” can be a mistake. Inclusion is not about an isolated program, it is about relationships. Invite others into your conversations.

Steps 8, 9 & 10: Lather, Rinse, Repeat

Ok, not quite. But the idea is to put your goals into action, build in the opportunity for assessment and reflection, and then do it all again.

When I was hired thirteen years ago by a Reform congregation in NJ, there were a handful of children in the religious school whose needs were not being met.  The desire was there to ensure that their experience would be as meaningful as anyone else’s.  And so I was invited to help design a program that would best meet their needs and the needs of the community.  Significantly, even from the beginning, my role was not to help teachers figure out what to do with the kids who were “ruining” classes for other students.  The concept was that everyone had a right to a Jewish education and we were going to figure out how to offer it.

Courtesy of B'nai Amoona Synagogue, St. Louis

Courtesy of B’nai Amoona Synagogue, St. Louis

I believe that this attitude, which is shared by the professionals, lay leaders and synagogue membership, has helped us to consistently meet our inclusive goals. Our school program offers a variety of options for students and we do offer pull-out classes, a concept that is sometimes criticized by advocates of inclusion.  What we have learned, however, is that there are some students in our community who need this level of individual attention in order to be successfully included in the life of the congregation.

For us, our work within the school has led us to explore ways to make worship and other aspects of synagogue life more inclusive. This is a work in progress for all of us.  We consistently learn from our efforts, reflect and evolve, finding the right options for everyone in our community.

As recent studies demonstrate a changing Jewish demographic in America and research illustrates that individuals with disabilities are turned away from synagogues, religious schools and other organizational programs; saying “yes” is a significant step toward inclusion.  Keep at it. Inclusion requires intentionality, dedication and perseverance. It is hard work, but it is work that is important, meaningful and satisfying.

Lisa Friedman is the Education Co-Director at Temple Beth-El in Hillsborough, New Jersey where she  oversees an extensive Special Needs program within the Religious School designed to help students successfully learn Hebrew, learn about their Jewish heritage and feel connected to their Jewish community. She also consults with congregations to develop inclusive practices for staff, clergy, and families through dialogue, interactive workshops and awareness training.  Lisa is a blogger on the issue of disabilities and inclusion. Follow her on Twitter to learn more.

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Don’t Count Our Children Out

jo ann cropBy: Jo Ann Simons

The 2013 World Series is now history, the champagne has been cleaned from the clubhouse floor, the parade is over and the confetti has been swept from the streets of a grateful city. Yet long after the players have dispersed to their hometowns and our region’s thoughts have turned to Super Bowl and Stanley Cup dreams, conversations continue about this year’s victorious Boston Red Sox. On my long commute each day, I have been listening each morning to sports radio dissecting this historic winning season and the players.

This team had been doubted and demonized and the fans showed their apathy by ending the longest sold out attendance streak in Major League Baseball. Much was said about the dearth of superstars which have historically been the foundation of a team and its fan base.  Boston’s fan base had deteriorated after the team’s dismal 2012 season amid talks of beer and fried chicken in the clubhouse.

Someone forgot to tell the baseball players they had been counted out- by their fans, by the Boston sports writers and by baseball.  They had something to prove and they delivered with a passion and love for the game. Sometimes with a flair for the dramatic- how else can you explain those 9th inning walk off home runs?

They were relentless. They came together as a team with little regard for what others had to say about them.

jo ann bosox
As I continued to listen to sports radio, I began to think of another team that sounded very much like our 2013 Red Sox. A team that I know very well- families of children with disabilities.

We are relentless in standing up for our children to be included in all aspects of life- education, housing, employment, sports and leisure activities. We do not care about what others say about us. We know the work we need to do and we do it. Too often, very much alone.

When it comes to our children, we might be dreamers but, what parent is not allowed to dream?

Realistic? Do not count our children out. We don’t settle for realistic. We set the bar just higher than anyone else thinks it should be. And then we watch with pride when they meet high expectations. And we prove the pundits wrong. Every day.

There will not be champagne when our goals are met. There will not be a parade for us when we are victorious. We will not be considered heroes.

But each and every day, we do the heroic and while we are not looking for full page ads in the Boston Globe congratulating us for our achievements, awareness and recognition of our efforts by our community would be nice. But I will settle for more public support and funding.

The 2013 Boston Red Sox made our town better. Keep them in mind at home: Just as they did on the field, our children at home make our lives and our community better.

Every single day.

Jo Ann Simons is a Disability Advisor to the Ruderman Family Foundation and President and CEO of the Cardinal Cushing Centers

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Bridging The Gap Globally

Jean JudesBy: Jean Judes

I was honored to be invited to present at the recent Conference on the Convention on the Rights of Persons with Disabilities (CRPD) at the United Nations this past July. Beit Issie Shapiro received Special Consultative Status to the Economic and Social Council of the UN in 2012, and it has been both eye-opening and inspiring for me and my colleague, Shosh Kaminski, to take part in the global dialogue concerning the CRPD and its implementation in different countries.

As a social worker through and through, with over 30 years of experience in the social sector, I was amazed at the commitment shared by so many colleagues from around the world, in both developing and developed countries to promote a joint agenda around disabilities. I felt a real sense of opportunity for mutual learning and dialogue in the air, though mostly through the informal talks, and less through the formal conference panels, which were very political in nature. During those informal moments and corridor conversations, Shosh and I were approached by representatives and organizations from countries that do not have diplomatic relations with Israel, and we were thrilled to hear them say that there is much to learn from Israel in the field of disabilities. Our Commissioner, Ahiya Kamara, was at the conference as Israel`s State representative and as always, made some powerful statements.

A large number of issues were discussed at the conference, but the following were the ones that stuck with us most:
– The important place allocated to disabilities organizations in the conference emphasizes the growing empowerment of the civil society around the world and its impact on policy in the field of disabilities.
– The conference highlighted the connection between poverty, disability and the State’s responsibility to allocate funds to minimize these phenomenon, especially through inclusive employment as a necessary economic and social mobility track.
– We learned about the growing use of information and communication technologies (ICTs) for developing abilities of children and adults with disabilities, and as a means to promote their inclusion in society.

Jean Judes at the United Nations

Finally, the conference encouraged us to continue with our work to set up a coalition of civil society organizations which will be involved in the implementation and monitoring of the CRPD in Israel. We believe that active participation by the civil society, together with State bodies, will bring about a more effective and qualitative implementation of the convention.

When I stood up on the stage in the main hall and looked upon the many state and civil society representatives from  around the world, I felt such great excitement and a great sense of pride to be able to represent the vibrant civil society in Israel. Many countries represented in the U.N. stifle their civil society and see it as a potential threat. This gave me a perspective on our democracy in Israel and the ability to influence through civic action .

I presented Beit Issie Shapiro’s Community-based Rehabilitation (CBR) model, which includes developing innovative model services that can be replicated, inclusion work designed to change attitudes in the community and influence policy and legislation, and developing and disseminating knowledge through research and training. I gave our inclusive and accessible playground – Park Chaverim – as an example of just how we put our CBR model into practice, focusing  on changing attitudes in the community and  legislation so that true inclusion can take place. Please click here to view the full presentation (scroll to 1:27:41), and click here to read the President of RespectAbilityUSA.org, Jennifer Laszlo Mizrahi’s take on the presentation, published in The Jewish Week.

Our model interested many countries, and representatives approached us to ask us additional questions and showed interest in learning more about what is happening in this field in Israel. It was so very heartwarming to receive such positive feedback and it raised some hope in me that so many of our differences and negative attitudes towards one another can be bridged by focusing on an issue that crosses all boarders and affects all cultures – disabilities!

Jean Judes is the Executive Director of Beit Issie Shapiro, Israel’s leading organization in the field of disabilities. Jean has been working in the field of disabilities for the past 20 years and believes in the necessity of social change in the way society treats those who are different. In order to improve the quality of life of people with special needs, society must be changed and the community made physically and socially accessible, so that people with special needs can become part of the community on all levels and in all spheres of life.

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Customer Service When You Enter CVS

Michael LibermanBy Michael Liberman- Transitions to Work Graduate

When I first started Transitions to Work, the Director, Madeline Wenzel, told me I would be doing a 3 month training to learn register and customer service skills. I started the class and was taught how to use the cash register, stock the shelves, how to keep the store clean and how to properly greet customers.

One week after completing the training course, the staff from the Transitions to Work program helped me get a three month internship at the CVS in Government Center. The internship would give me a chance to apply what I had learned in the training to working in a real store. On the first day of my internship one of the co-workers in the store was showing me how to stock shelves. I was given an aisle and I had to put items on the shelves and keep them clean. I did that and I loved it.

A little while into my internship, my manager came up to me and told me that she wanted to hire me as a Greeter in the store. I went home and thought about the position of Greeter and made the decision to accept the offer. As a Greeter, it is my job to stand by the door and say “Hello, how are you today, do you need help finding anything,” and I tell the customer to have a great day when I finish helping him/her. If the customer needs help, I walk them to the aisle and show them where the item is and explain to them the sale of that particular product. I make sure to use all of the GOT (greet, offer and thank) steps I learned during my training to each customer so they all continue shopping at our store.

I have been working in this CVS for about 5 1/2 months and I really like the people I work with. It feels good to be making money and making some new friends too. My experience working at a CVS has been great. I have even been employee of the week twice!  Everybody keeps telling me what a good job I am doing and to keep up the good work. Getting such positive feedback from my manager and co-workers makes me feel good.

CVS Michael Wenzel and Lianne Tan

Michael with CVS manager Lianne Tan

The Store Manager of the store recently sent me an email sharing a customer comment. “This store is amazing. All the staff here is helpful and especially Michael. He is the face of your store and it’s so nice to have him walk me to my items and take his time to explain to me about the products. I really appreciate him!”  My Assistant Manager thanked me for all of my help and greeting customers as they walk in the store and told me that our customer feedback is positive when I am working. I continue to provide good customer service to the customers so they will continue shopping in this store.

As I am working I am meeting some more people to talk to. A graduate from the last Transitions to Work CVS session just started an internship in my store and I recently helped her by showing her what I do as a Greeter. I started working here on March 26, 2013 and I am happy that I had the opportunity to get this job. I am glad to have been a part of the Transitions to Work program and I am grateful to the Ruderman Family Foundation, Combined Jewish Philanthropies, CVS and Jewish Vocational Service for making this program possible.

 Michael is a graduate of the Transitions to Work Program.  He is 21 years old and lives in Sharon, MA

TransitionsLogo_webTransitions to Work is a collaboration among Combined Jewish Philanthropies, The Ruderman Family Foundation and Jewish Vocational Service, to build relationships with employers to raise awareness about inclusive hiring practices and to engage corporate partners to consider young adults with disabilities as qualified, committed candidates for appropriate employment opportunities.  Transitions to Work provides an extensive 12 week training and internship program to enable young adults with disabilities to develop the skills needed for employment and place them into jobs that provide earnings and a sense of purpose.  

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Siblings Need Support Too- Part II

Don Meyer is the director of the Sibling Support Project, a national effort dedicated to the interests of millions of brothers and sisters of people with special health, developmental and mental health concerns.  As the project’s director, Don has conducted more than 300 workshops in all 50 states as well as Canada, Guatemala, Ireland, Italy, Iceland, Turkey, England, New Zealand, and Japan.  His workshops and trainings have reached thousands of parents and providers have helped establish more than 390 Sibshops worldwide.

Below is part two of an interview I conducted with him about Sibshops and the need to support siblings of people with disabilities. Part one of the interview can be found here.
– Ephraim Gopin, Communications Director, Ruderman Family Foundation

Credit: Mike Houle

Credit: Mike Houle

Who attends Sibshops?

Most Sibshops are for sibs of kids with developmental concerns. While Sibshops were developed for sibs in the 8-13 year-old age range, Sibshops (depending on the community) are being offered for sibs as young as six and for teens as well.

Why are most Sibshops developed for kids aged 8-13?

That age is the easiest time to get kids together. Their sibling’s disabilities may be affecting them. The concerns of siblings include:
– embarrassment (for example, a sister who removes her top at the swimming pool or the brother who has a major meltdown)
– resentment
– jealousy (the world revolves around the sibling)
– concern about the future that young siblings may be feeling

What more is needed for siblings of people with disabilities?

There’s still a need to create opportunities for siblings to connect with their peers. It’s natural that when we meet a parent of a child with a disability, we introduce them to other parents in the same boat…but for siblings we don’t automatically do that. I have met siblings in their forties who are just joining SibNet and they post: “I’m so glad I found this…this is the first time I’ve ever talked with anybody about my sibling’s disability.”

Siblings need info and that info changes as they get older. When they are…
– Kids: They need to know they did not cause the disability and they can’t catch it.
– Teens: They need information about what will happen when everyone grows up. Many times, parents do not share their plans for when they’re gone and so teens devise their own plans. They need to be able to discuss those plans and make sure they are realistic.
– Siblings who reach child rearing age: If there’s a genetic component to their siblings disability, they need to know so they can make informed decisions.

As far as policies, agencies need to acknowledge that siblings require services too. Agencies need to tweak their policies and actively reach out to them. Over the last four years, I have seen the beginnings of national organizations reaching out to siblings and creating programming for them. To me it’s obvious that this should have happened years ago- but better late than never.

We live in a time where people with disabilities will outlive their parents. Who will become the point people when the parents die? SIBLINGS! We need to do more for them. Immediately.

Where can I find a Sibshop near me?

OLYMPUS DIGITAL CAMERAThere are over 400 Sibshops in almost every state and country ranging from Argentina to Iceland and Ireland to Japan.  We have an online directory of registered Sibshops.

Don lives in Seattle with his wife, Terry DeLeonardis, a special education teacher and consultant and their  four children. Don is the senior author or editor of numerous articles and six books and received the 2007 Duncan Award from Children’s Hospital in Seattle for his work with families.  Don Meyer recently created a group for grandparents to connect with their peers. Enjoy this video about the importance of creating services for siblings.

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The Abysmal Truth About Abuse And Disabilities

simonsBy: Jo Ann Simons

The Disability and Abuse Project released a report in early September that gives low grades to state and local agencies for failing to respond adequately to widespread abuse of children and adults with disabilities. The press release states:

“The Report — “Abuse of People with Disabilities: Victims and Their Families Speak Out” — analyzes the results of what may be the largest survey of its kind in the nation.  More than 7,200 people took the survey which inquired into the experiences of people with disabilities as victims of abuse and bullying. Family members, advocates, service providers and various types of professionals also responded.

Over 70% of people with disabilities said they had been victims of abuse.  More than 50% of these victims had experienced physical abuse, with some 41% having been victims of sexual abuse.  Nearly 9 of 10 respondents with disabilities had suffered verbal or emotional abuse. Most victims said they had experienced abuse on more than 20 occasions.

About half of the incidents of abuse were not reported to authorities.  When reports were filed, fewer than 10% of alleged perpetrators were arrested.

Only one-third of victims received therapy and fewer than 5% received benefits from victim compensation programs.”

Sadly, while I did not participate in the survey, my personal experiences support these findings.

My son, who is now a well-adjusted, employed, home owning man with Down syndrome, has been physically abused, sexually abused, bullied and verbally abused.  I have not kept track of the number of occasions that this occurred but I am sure that it is close to the 20 occasions that most victims reported.

I reported the most serious offenses to the authorities. Their reaction was mixed. The high school assistant principal didn’t care about calling out the classmate who shouted to us as we drove to school, “There goes the retard.” The middle school principal tried as best he could to figure out how Jon received all the scratches on his body after a gym class.

The local police department arrested the young man who sexually abused Jon as his transportation provider. They were very supportive in getting Jon’s story and believed the 8 year old with Down syndrome. Maybe it was because the perpetrator was known to them. The district attorney was very interested in the case but, eventually didn’t think they could get a conviction under the archaic system that would have required Jon to face his accuser in an adult court room.

Stop_Sign

We wanted the school system to be accountable. We questioned why they were still allowing the driver to transport other children, after pulling Jon from the transportation, since we presented evidence that he abused Jon and others were at risk. We faced a belligerent school system that preferred to bury their head in the sand and then hide behind their expert witnesses whose credentials included discrediting children as witnesses.

In the end, we settled, reluctantly.  We used the small sum of money, funds that could never begin to undo the damage, towards the fabulous celebration of achievement that was Jon’s Bar Mitzvah.

We all suffered. Our family was almost torn apart by this horrific abuse. Some of my family was in denial, others were as pained as I was. While we tried to shield our five year old daughter, her keen sense of hearing allowed her to listen to our quiet conversations with Jon. I have no idea how we found the explanation to answer her query: “The man driving him to school did that to him?” Somehow, we found the words, the strength and the love to move forward; though I am still haunted by the possibility that the abuser has found other victims.

So I regularly check the sex offender data base. Just to be vigilant. The abuse itself may have ended but its effects linger.

Jo Ann Simons is a Disability Advisor to the Ruderman Family Foundation and President and CEO of the Cardinal Cushing Centers

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Back To School Tips

Sharon GoldsteinBy: Sharon Goldstein

Have you ever really thought about all that goes on during your child’s day in school? Each time they switch classes, it can literally feel like stepping into another country. Each teacher has different rules, expectations and customs. Do you raise your hand to go to the bathroom, or just go? Are you penalized for handing in an assignment late? Can you call out an answer, or do you need to raise your hand? Can you eat in class? Imagine how much more overwhelming this can be for students with executive functioning and organizational issues. Here are a few strategies that parents and teachers can implement to help ease back-to-school anxiety and navigate the academic jungle.

  • Before the start of the school year, visit the school and walk around, find the restrooms and other important places. Also let your child check out the playground and play.
  • Butterflies can be anxiety, but it can also be excitement. Help your child articulate what s/he is feeling by asking open-ended questions: What do you think will be different this year?  What are you curious about? What have you heard about ______ grade?
  • You know your child – use her/him as a gauge as to how much information to provide. Some children need to know exactly what to expect and don’t like the unknown; some children become overwhelmed by too much information.
  • Current research is telling us that there are positive correlations between movement/physical activity and learning and achievement.  Encourage some form of physical activity before school. This gets the blood pumping and aids in concentration at school.
Gateways Back to School

Photo courtesy of Gateways

  • Establish a routine bedtime prior to school starting.
  • Most children need down time after school before doing homework. Let them take a breather.
  • Establish a predictable homework routine. Give them a snack before they begin homework. Have a quiet place to study/do homework. Your child will need to take breaks – expect them to take short breaks every 20 minutes to move around (ten jumping jacks is a great tool to get out energy and refocus them). When they complete their homework, have them put in their backpack and pack anything else they need for the next day. That way, in the morning, the only thing left to put in the backpack is lunch.
  • Create a morning routine (e.g. wake up, get dressed, eat breakfast, brush teeth and hair, make lunch, put it in backpack, go to school). Remember to eat protein at breakfast and pack healthy snacks to help boost learning and concentration.
  • For older students with longer term assignments, consider hanging a whiteboard calendar in an obvious spot with any appointments/sorts/activities so they can plan accordingly.
  • Be aware of how many/what types of after-school activities are appropriate for your child. Again, you know your child best.
  • If you point out the fact that each class/teacher is different, it will help students focus on figuring out the “customs” of each class.  Making them aware will help them pay closer attention to these rules that some students figure out easily but others need to be explicitly told.  Encourage students to feel free to ask the teacher about his/her rules and expectations, if they are not sure.

Using these strategies will cut down on typical back-to-school anxieties and help ease your child back into the daily grind. We wish you a happy, successful year!

Sharon Goldstein is the Director of Day School Programs for Gateways: Access to Jewish Education. Gateways is Greater Boston’s central agency for education for children with disabilities across Jewish institutions. Additional tips were provided by Sharon’s team of therapists. Engage with Gateways on Twitter or connect to Gateways on Facebook.

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