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Independence Day?

Jo Ann SimonsBy: Jo Ann Simons

We recently celebrated Independence Day in the United States. We celebrate with parades, picnics, baseball, concerts and fireworks. I am not sure how many people actually took time to reflect on our independence but I thought a lot about the independence I take for granted. Not grand independence like freedom from tyranny or the right to vote but the independence that most people with disabilities still do not have.

Last night, I went out to dinner and ate too much. Then I took my 5 and 7 year old nieces out for ice cream- way past their bedtime. This morning, I decided to sleep late. I went to the gym and worked out for as long as I wanted. Spur of the moment, I met a friend for coffee. I decided to skip breakfast and have lunch before noon. I ate popcorn after my early lunch because I felt like it. I haven’t made my bed.

July 4thThe point I am trying to make is I have the independence to control much of my life. Sure, I have obligations and responsibilities but I don’t ask permission from anyone about when I go to sleep, wake up or what I eat or when. I am free to be with whoever I want. I can do things spontaneously, like keeping my young nieces out after 10 PM- or occasionally bending the rules, like when small children should go to sleep.

Most people with disabilities who depend on others for care, do not even have even enjoy this level of independence. Caregivers often make the decisions about these simple acts of daily living without input from the people they serve. While we work for the full inclusion of persons with disabilities in major areas of life, such as economic security, employment, housing, education and religious life, let’s not lose sight of the very important rights to independence:

The right to choose your friends.
The right to set your own schedule.
The right to eat when you want.
The right to skip your chores for another day.
The right to take risks.
The right to skip breakfast and eat popcorn.
The right to make bad decisions.

I have personal and professional experience. As a professional, I have seen the loss of dignity that comes when others make the decisions about when a person gets up, showers, exercises, eats and controls their access to friends and even family.

Personally, I have worked hard to make sure that my son Jon, who has Down syndrome, has as much control over his life as possible. I may not like all his decisions and choices- he stays up until after midnight most nights, he drinks too much diet soda, he has had way too much success in trying to taste every kind of beer in the world. But I work hard to smother all my maternal instincts and let him live his life and respect that he is 35.

It is hard sometimes and occasionally dangerous. Jon does not like to bother people and when he was sick recently, he minimized his symptoms. He has a complicated cardiac condition and in the area of his health, I draw the line. I choose his physicians but he makes his treatment decisions.

We don’t have to wait until next July 4th to start our own kind of fireworks, where people with disabilities get to control their own lives and the rest of us step back.

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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Affording Inclusion

Lisa FriedmanBy:  Lisa Friedman

The question we should ask is, “How can we NOT afford inclusion?” Given all the research, all the discussions, all the evidence; how can any Jewish institution afford to turn away a single person who wants to belong?

To be clear, when I use the word “afford” there is certainly a reference to finances. But it is essential that we make inclusion a reality regardless of our means. When I say we can’t afford to turn anyone away, it’s because I believe, genuinely and wholeheartedly, that there is a place for every person in the Jewish community. So why is it that we have yet to make the shift from wondering how we, as synagogues, camps and Jewish institutions, can afford inclusion, to making inclusion a priority and FINDING the money?

I get it, trust me. I live in the real world of synagogue life….the world of declining membership, budget challenges and tough choices. But we need to think about what it means to be a part of a community that excludes. When we turn someone away, we lessen ourselves. That’s just not a risk any of us should be willing to take.

Alexis Kashar, a special education attorney in New York who happens to be deaf says it best, “When I am not in temple, my family of five is not in temple. The ripple effect is real.”

While there is no denying that some aspects of accommodating people with disabilities can carry hefty price tags, becoming an inclusive organization is not always expensive. Here are practical, inexpensive and realistic ways to make inclusion a reality for your organization:

The most significant barrier to inclusion is attitude; and changing attitudes is free.
It’s hard work. It takes genuine commitment. But it is free.

You can begin by being mindful and intentional in the way you speak. Help to change the way clergy, staff, teachers, madrichim (teen teaching assistants) and board members speak. Change the wording on your forms, website, and school and synagogue communications to be fully inclusive. Make this one deliberate change and then reflect on what this change has brought to your community.

temple

Invest in professional development
This could be where you get the “biggest bang for your buck.” Most religious schools have a budget for professional development. A congregation can bring someone in to lead a full-day or a half-day workshop for teachers and madrichim. Include members of the clergy and board. Consider inviting parents or running a parallel learning track for parents and lay leaders. When everyone is invested, you reduce the possibility that anyone will consider inclusion “someone else’s issue.” You have the potential to move your community to a place of “this is who we are” and “this is what we do.” Maintain the learning with in-person or virtual check-in opportunities throughout the year.

Use your synagogue’s existing tools to promote inclusion.
As discussed above, you can make inclusion a synagogue-wide priority. Encourage clergy to offer sermons about the value of inclusion. Select texts to study together at weekly Torah study, in committee meetings or at special programs. Write about inclusion in your synagogue bulletin and highlight success stories in your monthly newsletter. Incorporate lessons on disability awareness, tolerance and acceptance in religious school classes, at youth group events and at board meetings.

“It is not your responsibility to finish the work (of perfecting the world), but neither are you free to desist from it” ~ Pirkei Avot: 2:16

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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Sunflower Interview

Sara Portman Milner (L), Laurie Wexler (R)

Sara Portman Milner (L), Laurie Wexler (R)

Sunflower Bakery was a recipient of the 2013 Ruderman Prize in Inclusion. Below is part one of an interview conducted with the founders, Sara Portman Milner and Laurie Wexler, where they discuss what makes the bakery unique, the community support and how they view inclusion.

Please share with our readers your personal history- where you grew up, professional career etc.

Sara: I grew up in Savannah, Georgia. I was the fifth of six kids. When I was 14 years old, my parents gave birth to a child with Down syndrome. Our family pediatrician and the rabbi of our synagogue told my parents, “don’t bring him home. You have a beautiful family- send him away.” They did the exact opposite- all the kids wanted their baby brother to come home.

My career has been devoted to giving opportunities to people with disabilities- in Savannah, there weren’t many opportunities. There was primarily exclusion. My brother was actually the first to have an inclusive bar mitzvah at our congregation.

I’m a social worker by training. I started the disabilities program at the Greater Washington JCC where I worked for 34 years. The good news is that the Jewish community in DC got together to aim for inclusion. The bakery was a great opportunity to have a match for what I do.

Laurie: I grew up in upstate New York & South Florida, went to college in Texas and received a Masters in Jewish Communal Service from the Hornstein Program at Brandeis. I have worked for several Jewish organizations focusing on local community needs and Israel initiatives in Florida and DC.

My husband was elected to Congress in 1996, so our family moved to DC. I volunteered at the Ivymount School for students with special needs and the experience stuck with me. I have met numerous adults that have children with disabilities who are eager to find opportunities that will enable their children to become productive members of society. This led me to start exploring ideas for employment training for young adults with disabilities.

The most attractive possibility was to create a pastry arts training program. It also turned out that the DC Jewish community could support another kosher bakery. So, after visiting a bakery in Virginia Beach that employs individuals with disabilities, we married the concept of a kosher bakery with preparing young adults with disabilities to enter the job market.

What makes Sunflower Bakery unique?

Sara: Our chef says: It’s not about baking pastries- it’s about helping people have a career. They should have choices, have meaningful choices. We’re giving them the skills to a career that wasn’t an option to them before. Traditional baking schools are not an option for them. We allow them to develop skills in something they’re interested in. The individualized nature and going beyond skills training (inclusive training) makes it unique. We’re not just teaching baking skills- it’s life skills, professional skills (grooming, showing up etc)- things that are being taught in a very natural, inclusive environment

Laurie: Sunflower is a unique hybrid: it’s a kosher bakery and it’s a place to learn skills. As a nonprofit, it is helpful to have the earned revenue from the sales of products. Sunflower works hard to help the students become trained and ready for the workplace. Some of the students don’t have a service provider or support system in place & we can help get them started. In the end, we can help them to become employees who can go to work and do a job like the employer wants.

Sunflower students preparing mandel bread dough

Sunflower students preparing mandel bread dough

What special teaching methods/special services do you offer/use at the bakery?

Sara: Part of the beauty is that none of the pastry chefs have experience with special education. Therefore, we can mold them to teach and work with the students. We get information from the students, get their individualized education plan which educates us on what avenues are best for teaching them. Do they learn better by reading, watching, listening? We use every learning modality available so each individual learns the skills he/she needs.

Laurie: The very first thing we decided was to hire a professional pastry chef because we knew we wanted a program that was focused on the profession and to prepare them for employment. We were volunteers but we had a professional pastry chef who was paid. Now we have 3 pastry chefs, two work directly with the students and one manages production all day long. We chose baking and pastry- if you can learn to follow a recipe and do what’s asked, you can be successful at producing that product.

Sara: The repetitive nature of the work; you don’t change your cookie recipe every week. We have to deal with sensory issues (light, sound, smells)- they have to be able to work in the kitchen. There are certain accommodations we took into account to make sure they’ll be successful out there.

Did people approve of you starting a bakery that trains/employs people with disabilities?

In the very beginning, it seemed a little difficult for some people to envision. We knew that to be successful, we needed to meet not only the need for employment training for individuals with disabilities, but also provide a broader community benefit. This benefit was providing a kosher, parve bakery under the supervision of the Rabbinical Council of Greater Washington. Our synagogue, Beth Sholom Congregation in Potomac, MD, readily donated kitchen space for us to begin the pilot program. Community members first purchased our products because they liked the organization’s mission, they purchased a second time because they liked the product. We then knew we were on the right path. The community is enormously supportive.

What difficulties did you face when starting the business?

The main difficulty in starting this venture was determining the correct blend of a skilled employment training program and a production bakery with pastries for sale. A related challenge was determining an accommodating course of instruction and training that would best position our students for success in employment.

How do you define inclusion?

Laurie: Inclusion is a value. Everyone should have the same opportunities, do as they wish (which goes beyond the educational setting) and people becoming valued members of society. It’s a way of life, giving people the possibility to have meaningful relationships so they can join the community & reach their highest potential.

Sara: It’s NOT about numbers. You have no clue how many people have a disability out there. Everyone should be given opportunities to be the best they can be. While that is not the same for every person, each individual should have the chance to apply their achieved skills to a job to be self-supporting and productive members of a community.

Sara Portman Milner and Laurie Wexler are the co-founders and co-directors of Sunflower Bakery located in Gaithersburg, MD.  They can be reached at sara@sunflowerbakery.org or laurie@sunflowerbakery.org. Visit them on Facebook at Sunflower Bakery. 

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One Grant- A Lifetime Of Change

Carole ParrishBy: Carole Parrish

The J.E. & Z.B. Butler Foundation was created in 1954 and remains a living legacy to Zella and Jack Butler and their deep commitment to New York and the Jewish community. Zella and Jack were my aunt and uncle. They were warm, deeply caring people and they treated their nieces and nephews with special affection. The Foundation is committed to continuing Jack and Zella’s vision with diligence, compassion and creativity.

In 1939 their only child, Barbara, was born with severe developmental disabilities. As there were few options for people with disabilities at that time, Barbara was cared for at the Devereux School in Philadelphia from the age of four until she died in 1993.

The Butlers’ first-hand knowledge of the challenges encountered by individuals with disabilities and their families led to their lifelong commitment to insuring that people with disabilities had access to programs that would enhance their lives. For years, Zella read to visually impaired university students helping them realize their academic dreams in spite of their disabilities. Zella often said, “I have graduated from most of the colleges and universities in the New York area by osmosis.” Jack was a man of humor and grace who had a special rapport with young people, serving as their mentor and friend; his devotion was unconditional. Together they opened their home for Shabbat dinners and holiday celebrations. Young and old, family and strangers became friends around their table.

In 2003 the Foundation started funding in Boston, continuing the work that was started in NY. One of the early organizations I met with was The Asperger’s Association of New England (AANE). AANE works to support individuals with Apserger Syndrome and similar autism spectrum issues and their families. They help individuals build meaningful, connected lives by providing information, education, community, support and advocacy.

Dania Jekel, AANE Executive Director: “The Butler Foundation began funding AANE’s child and teen programs in 2005. Before that, our Child and Teen Services department didn’t exist: We had three clinical staff members who handled all calls and questions relating to individuals of all ages, from 2–90 years old. Thanks to the Butler Foundation grant we were able to hire an additional part-time staff person, which greatly enhanced the support we can offer to families”.

Butler educator's conference

AANE Educator’s Conference

The extra staff also enabled AANE to expand educational offerings. Since 2005 they have developed and offered several different seminars and support groups held both in person and online. The online offerings are able to reach families throughout New England who otherwise would be isolated and not able to benefit from all that AANE has to offer. Interaction with parents has helped to shape subsequent programs, ensuring that they are meeting the current needs of the community.

The grant has allowed AANE to offer many options for learning, community building, and problem solving:

  • Asperger Syndrome Information Line:Parents can call or email AANE Child and Teen Services staff whenever they need referrals, have questions or concerns, or just need support to raise and educate their child.
  • Parent Topic Nights: These are free events to discuss the issues that keep parents up at night. Topic nights also include time for parents to meet and network.
  • Workshops: AANE staff and trainers offer in-depth, practical workshops designed around parents’ top concerns, from preventing meltdowns to handling homework to IEPs.
  • Ask the Expert Series: Professionals in the field share their expertise and answer questions on a variety of special topics.
  • Consultations: AANE staff members provide customized information and guidance in order to help parents feel more confident in their ability to plan and advocate for what their children need at school, at home and in the community.
  • Online Support Groups: Groups are free for current members. AANE parents can connect and communicate with other parents 24/7/365 online. AANE also offers moderated discussion/support groups for parents of children or teens.
  • Transition GPS: A coordinated set of workshops and services that address families’ needs during this developmental stage.

Families from the New England area and around the globe have benefited from the work that AANE is doing with children and youth.

One parent writes:

“When my son was diagnosed with AS at age 7, the diagnostician urged us to join AANE. He could not have made a more useful suggestion. Our son is now almost 17, and over the last ten years we have attended many meetings, workshops, webinars, support groups, and conferences. We keep coming back because AANE parent resources are always on the cutting edge of best practices in the field.  Every AANE staff person I know is both knowledgeable and empathetic. The email list for parents of teens with AS is a regular treasure trove of information. My parenting has been much more effective because of AANE, and when I meet younger parents who have a child with AS I always advise them to join.  We are very, very fortunate to have AANE in our community.”

It is gratifying to know that so many individuals, families, schools and communities are being served by the work that AANE is doing. We have watched them grow, always on the cutting edge, always finding ways to serve families, regardless of distance or circumstance. Jack and Zella Butler would be so pleased to know that work like this is being done as a result of their life and their legacy.

Carole Parrish is the Vice President of the JE&ZB Butler Foundation. She heads up the foundation’s work with people with disabilities and at risk youth in the Boston area.

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A Thousand Words

jo ann cropBy: Jo Ann Simons

Sometimes a picture is just a picture and sometimes it’s more. On a recent Caribbean vacation we were taking a bus tour when I looked forward and saw something so ordinary but so powerful that I grabbed my cellphone and took a picture. It was a young man’s leg in the aisle of the bus. He was wearing rugged footwear and a fashionable bathing suit and a polo shirt. His hands were clasped together. I couldn’t see his face but he might be handsome, thoughtful and strong. I imagined him happy, accomplished and satisfied. I saw him, in that moment, how I do see him and how I hope the world sees him.

Without judgement.

Jo Ann St KittsThis picture is my son and it was taken last month on St. Kitts. I was sitting several rows behind him on that bus. Without his face visible, it was possible for me to see, for several exquisite moments, the hope I have for a truly inclusive world. A world where Jonathan was judged by his employment success and not by the facial features that tell the world he has Down syndrome. A man who has his own home, who decides what time to go to bed, get up, shower and what time to eat. What if they saw him as a powerful swimmer and not someone whose chest is defined by the scars of open heart surgery? What if they saw him as a man with 6000 songs on his I Pod and not someone wearing hearing aids?

What if disability were invisible and we judged people by their character? While I believe that differences and individuality ought to be celebrated and embraced, they are NOT a reason to exclude or discriminate.

Or judge.

What if it didn’t matter because we didn’t notice?

Or care?

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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An Inclusive Tu Bishvat Seder

Daniel SchwartzBy: Daniel Schwartz

A highlight of the year for the entire New England Yachad community is the Tu B’Shevat Seder with K’sharim and Shaarei Tefillah Synagogue, which was held recently in Newton, MA. The Tu B’Shevat Seder ceremony commemorates the new year for trees, which falls on the 15th day of the Jewish month of Shevat. Individuals of all ages with disabilities, their families and the broader Jewish community participated. Congregation Shaarei Tefillah and its rabbi, Benjamin Samuels, have consistently shown eagerness to take initiatives to include people with disabilities into their community. Shaarei also co-sponsored the event and was recently recognized nationally by the Hineinu Initiative as one of the most “Inclusive synagogues in the country.”

Over 130 people attended the Tu B’shevat Seder. Over forty teen ‘peer participants’ also attended the Seder to enjoy the evening alongside their Yachad friends. At Yachad we don’t have “volunteers” because everything we do is inclusive – so our cadre or middle and high school students without disabilities, who attend activities alongside the individuals with disabilities, are called peer participants.

The Seder opened with two activities: working on a community mural with artist Tova Speter and completing a make-and-take arts and crafts project. The tables of the Shaarei Tefillah social hall were adorned with art supplies, make-your-own flower pots, stencils, and ceramic tiles waiting to be decorated. As the Seder participants began to create these bright, nature and/or tree-related projects, the atmosphere was one of friendship. Around the room, people helped each other out with their art, offering Tu B’Shevat inspired ideas for each other’s art projects and socializing. Eventually, the vast majority of people in the room had their own project to take home– either a decorative tile or a flower pot– and each was specific to each participant’s taste, yet united as part of one general theme of Tu B’Shevat and renewal.

Yachad tu bishvat
Perhaps most impressively, the girls of The Binah School in Sharon, MA led an array of activities. First, these motivated students publicized their recent projects in school that were part of a Binah School unit that focused on inclusion. Then, the Binah School invited the seder participants, table by table, outside into the synagogue’s atrium to contribute to their mural. The mural created by the Binah school and Tova Speter is traveling in pieces to disabilities groups and programs from across Greater Boston in addition to Yachad and K’sharim and is set to be the first public mural on display in the town of Sharon. The mural represents values of community and sharing. Every participant who wished to contribute had an opportunity to draw his or her own design in an individual portion of the mural. This activity was a great builder of self-esteem for all, especially the artistically talented Seder participants. (Unfortunately, I do not fit into this category!)

The Tu B’Shevat Seder  continued with eating fruits and nuts of all kinds- from papaya to mango, kiwi to apricots, carob to cashews. The goal was to commemorate the new year for the trees and celebrate what they bring forth.

This year’s Tu B’Shevat seder was fun, inspirational, and unifying for our communities. We hope we can reach even higher heights in Seders to come!

Daniel Schwartz is a senior at The Maimonides School in Brookline. Among his many other hobbies and interests, which include baseball, acting, and Jewish learning, he has been involved for the past three years in New England Yachad.  Daniel writes, “Our local Yachad club began as a small group of Maimo students who would go together to events within the Jewish community with a handful of people with disabilities. It remained small for many years. After a few of us attended Yachad’s National Leadership Shabbaton 2 years ago, we became committed to helping transform our Yachad chapter. Our commitment to doing more programs with individuals with disabilities received a huge boost with the support of Liz Offen, an inclusion expert, hired as the Director of New England Yachad. In a short time, our chapter grew to more than 250 participants– students and adults, people with and without disabilities, within the broader Jewish community.” Contact New England Yachad at NewEnglandYachad@ou.org

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Third Annual Ruderman Prize In Inclusion Announced

We are happy to announce the launch of the third annual Ruderman Prize in Inclusion global competition. The Prize recognizes organizations who have demonstrated their commitment to the full inclusion of people with disabilities into the Jewish community through innovative programs and services. The $250,000 prize will be split equally by five organizations.

“Our foundation is seeking to recognize and award excellence in the inclusion of people with disabilities in our Jewish community around the globe,” said Jay Ruderman, President of the Ruderman Family Foundation. “It is our hope that by shining a light on the leaders in inclusion in our community that we will encourage other organizations to follow their lead and effectuate lasting change. We believe that a more inclusive Jewish community is a fair and flourishing one for all.”

Come over to Facebook, Like our Page and watch a video of Jay announcing the launch of this year’s prize.

Over the last two years, fifteen organizations worldwide have been recipients of the prize, including organizations in Russia, the UK, the United States, Mexico, Israel, South Africa and Argentina. The winners include schools, a synagogue, a dance company, a bakery and organizations that serve all Jews, whether they have a disability or not.

Prize in inclusion logoFully inclusive programs ensure that everyone can participate together, without stigma or imposed limitations. Each year, the Ruderman Prize in Inclusion honors the programs and organizations around the world whose work best exemplifies the full inclusion of people with disabilities, celebrating them as inspiration and models which could be replicated elsewhere. The Ruderman Prize in Inclusion is a signature program of the Ruderman Family Foundation, which believes that inclusion and understanding of all people is essential to a fair and flourishing community.

Guidelines and a link to the application form for the awards are available on the foundation’s website, rudermanfoundation.org. Submissions are due by Monday April 7, 2014 and the winners will be announced in June.

Good luck!

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