A Day to Explore

Our summer intern, Stephanie Reynolds, has been chronicling her daily experiences at Camp Shutaf. A recent college grad from Toronto, Stephanie has been having a blast experiencing camp and inclusion the Shutaf way. Enjoy!

IMG_20150731_182637When I got to Camp Shutaf, I was told I had the option of joining a group of young campers or going on a scavenger hunt with the teen camper. I was a little hesitant to leave the camp location but thought a day out exploring would be fun. I’m very glad I made the decision I did, as I got the opportunity to see various sections of the municipality and learn about the history of the area. I got to see the Old City, and in particular the Armenian Quarter which I’ve never seen –  I was really excited and impressed. Thankfully, I was put in a group where the counselors spoke very good English. One of them even gave me a little history lesson about the Armenian quarter which I really enjoyed. Learning about the rich history of Jerusalem and the Old City would’ve been enough but I also got to relax in the shade while eating lunch and a popsicle.

Today was a very different day to my previous experiences at Camp Shutaf but I thoroughly enjoyed myself. I wasn’t running around as much and wasn’t able to communicate as much with crazy actions during activities but I was still so pleased with how the day turned out. Now I don’t know what to do. Do I stay with little campers or do I mature up and go with the teens?

קייטנה לילדים בעלי צרכים מיוחדים מחפשת מקום קבע בירושלים

Author: Dana Pollak. This originally appeared in Walla News, on May 7th, 2015

שתי אימהות לילדים בעלי מוגבלויות הקימו מסגרת שתספק מענה לחופשות ולאחר הצהריים עבור
150 ילדים בעלי צרכים שונים. עכשיו, הן מחפשות מקום קבוע שיגרום להן להפסיק לנדוד, לטענתן לעירייה “לא אכפת”. עיריית ירושלים: “הבקשה תיבחן”1469827-18

מרים אברהם ובת’ שטיינברג, אימהות לילדים עם צרכים מיוחדים חיפשו מסגרת לילדיהם לתקופות חופש – חיפוש שלא העלה פתרונות. לכן, החליטו השתיים לפתוח בעצמן מסגרת עמותת “שותף”. כעת, אחרי שנים של פעילות, הן מחפשות מקום קבוע שיארח אותן בחופשת הקיץ. פניות לעיריית ירושלים, העיר שבה פועלת הקייטנה, נתקלו בדחיות חוזרות ונשנות לקבוע פגישות.

“התחלנו לפעול ב-2007 אבל עד היום לא מצאנו בית קבע”, אומרת שטיינברג, “את הפעילויות במהלך השבוע אנו עורכות בבית ימק”א בעיר ואת קייטנת פסח עשינו במוזיאון הטבע. היה מקסים שם וזה יכול להיות מקום מצוין גם לקיץ, אבל עכשיו מדברים על מכירת הקרקע לטובת בנייה. למה לא להשאיר משהו לטובת הילדים?”

“אנחנו שלושה חודשים לפני אוגוסט והמצב קשה. איש לא רוצה אותנו כשמדובר על תקופה של שלושה שבועות בלבד”, אומרת שטיינברג. “בפסח אנחנו הולכים לבתי הספר, אך בקיץ זו תקופה של שיפוצים לקראת השנה הבאה, אז זו לא אופציה. אנחנו מנסות לדפוק על כל דלת בתקווה למצוא מקום שיקבל אותנו ויהיה בגודל מתאים ונעים לילדים וגם מותאם לצרכיהם”.

את “שותף” הקימו שטיינברג ואברהם, עולות מארצות הברית, בעלת קייטרינג ומעצבת גרפית. תחילה, הייתה זו מסגרת קטנה שמטרתה לספק מענה לכמה משפחות שהכירו שחיפשו תעסוקת אחר הצהריים ובחופשות לילדים. “זה התחיל מעשרה ילדים שהעבירו שבועיים בכייף עם ארבעה מדריכים”, אומרת שטיינברג, “כשדיברנו עם ההורים הבנו שכולם הרגישו שלראשונה מצאו את מקומם. זה התחיל כמיזם פרטי לגמרי והפך למסגרת שהיא הרבה יותר ממה ששיערנו”.

כיום מציעה “שותף” תכניות שבועיות ופעילות בחופשות ליותר מ-150 ילדים ובני נוער עם צרכים מיוחדים בגילאי 21-6 בירושלים. הארגון יצר מודל משולב חדש שבו 75% ילדים עם צרכים מיוחדים והשאר הם ילדים “רגילים”. בין התכניות שמפעילה העמותה ניתן למצוא מועדוניות, קייטנות בפסח ובחופש הגדול, סדנאות שילוב לקהלים שונים ותכנית מד”צים- מנהיגים צעירים עם צרכים מיוחדים.

ייחודה של המסגרת הנו, כאמור, השילוב שבין ילדים עם צרכים שונים באותה מסגרת, שילוב מסוג שלא נראה באף מקום. הדבר מוביל לרשימת המתנה לקייטנה, רשימה שכוללת בעיקר ילדים רגילים. “אחרי הכל, גם הם מחפשים מסגרת ואנחנו נותנות משהו שלא קיים כאן. יש הורים שמבינים את היתרונות”, אומרת שטיינברג.

אברהם מוסיפה: “אנחנו עושות בפועל מה שהאקדמאים ואנשי המקצוע מדברים עליו – שילוב. זה לא רק לקחת ילדים בלי צרכים ועם צרכים אלא גם לערבב בין המוגבלויות. היום, מדיניות הממשלה מונעת שילוב שכזה וזה חבל. זה מוביל לבזבוז כספים כשעושים פעילות אחת לאוטיסטים, אחרת לבעלי פיגור ואחרת לבעלי תסמונת דאון. לכן, אין לנו טעם לגשת למכרזים של העיר או של המדינה כשכל מכרז מגביל אותנו לסוג מוגבלות ספציפי ואוסר עלינו לשלב ילדים עם מוגבלות אחרת או ילדים רגילים”.

“אם לא נמצא מקום גדול מספיק נאלץ לקצר את הקייטנה”

השתיים פנו לעיריית ירושלים במטרה לקבל סיוע באיתור מבנה – אך לא הצליחו למצוא אוזן קשבת. “שנים אני מנסה לשבת עם ראש העיר ולספר לו על העבודה שלנו אך זה לא יצא לפועל”, אומרת אברהם. “יש לנו פגישות עם אנשים בעירייה ממחלקת שיקום ומאגף הנוער, והם יודעים שאנחנו פועלות למען ילדים עם צרכים מיוחדים אך לא ממש אכפת להם. אנחנו מקבלות מהם עשרת אלפים שקלים, אבל למה זה מספיק? הם לא מבינים שאם משקיעים בילדים האלו עכשיו יהיה להם עתיד טוב, הם לא יהיו נטל על איש. אבל היום איש לא משקיע בהם”.

“אנשים בעירייה או גורמי מקצוע לא רואים את הפוטנציאל, לא מבינים שאנחנו הצעד הבא. אבל אנחנו ממשיכות לבדנו”, אומרת אברהם. “אם לא נמצא מקום גדול מספיק או כסף לשכירות למקומות שכרגע אין ביכולתנו לממן ולהתאים לצרכינו, נאלץ לקצר את הקייטנה. אבל זו לא הכוונה”, היא מוסיפה. “אנחנו כאן לספק מסגרת לילדים, מסגרת שתתאים לצרכיהם ותעניק להם את הכיף שכל ילד עושה בחופש הגדול”.

מעיריית ירושלים נמסר: “עיריית ירושלים מאשרת הקצבות על-פי קריטריונים מקצועיים, והעמותה קיבלה הקצבה בסכום של עשרת אלפים שקלים. לעירייה הגיעה רק לאחרונה בקשה מעומתת ‘שיתוף’ להקצאת מקום לפעילותם, והבקשה תיבחן בהתאם לקריטריונים ולנוהל ההקצאות”.

לפניות לכתבת דנה ווילר פולק: danawp@walla.co.il

Shutaf: The Best Place To Be

In one room, four pre-teen girls closely followed the complicated sequence of Zumba steps their teacher, Lisa, was doing in time to the music.  In an adjacent room, a small group of children, aged 6-13, sat in a circle petting a variety of animals brought in by Aryeh, a staffer from Jerusalem’s Nature Museum who has worked at Shutaf for many years.  One boy finally worked up the courage to pet a rooster (more than I could do); another stoked the soft fur of a white a rabbit; and others carefully held guinea pigs, and other tame animals.  Downstairs in the gym, under the supervision of a gym teacher, two teams were engaged in a spirited obstacle course-type relay race involving running, balancing on a beam, and aiming a basketball into a net.  A preteen unable to run due to a back injury, participated by serving as the timekeeper with her Smartphone.  But, winning or losing didn’t really seem to matter; it was all about being in the best place to be for having fun, socializing, cooperating, and getting exercise.

Marci, the Program Director of Shutaf’s informal, inclusive education program had been giving me a tour of the inclusive afterschool activities held two afternoons a week at the Jerusalem YMCA.  It was important for me to see and appreciate first-hand one of the Shutaf programs in action.

Arranged by Skilled Volunteers for Israel, I was a volunteer from the U.S. for a month. Thus far, I had been spending my time working at the Shutaf office alongside Beth and Miriam, the organization’s founders; Marci and Yoni, a staff professional), with Elizabeth, the Director of Outreach and Education, and Rebecca, another volunteer from the U.S.

Meeting four days a week at the office, we collaborated on key issues: program planning, grant writing, and program assessment.  We clarified ideas about each program’s goals and objectives (for the after school program at the YMCA), camp programs (the week before Passover and for three weeks in the summer), and the different units specially designed for the teens.  For example, we documented what had occurred during a teen unit on going to a restaurant, and another on sex education.  We listed the ways in which these units resulted in a positive impact on the teen participants.  For the restaurant unit, we discussed how the teens succeeded in learning appropriate restaurant behavior, how to order, and what it meant to converse over a meal.  We worked on formulating and refining plans to share with current and future donors, to ensure that they would understand and financially support Shutaf’s many, valuable programs.

I have come to appreciate that no matter where you may be—at the YMCA, at camp, taking a field trip with the teens, or working at the office with extraordinary colleagues—Shutaf is the best place to be, not only for the program participants, but also for a volunteer.

Thank you, Shutaf!

Judith Zorfass, February 24, 2015

P.S. And the extra bonus for me was that it was the best place to be for the month of February—who cared about a Jerusalem snowstorm (we had much, much worse back home in Boston).

judyz (1)Dr. Judith Zorfass is currently a senior advisor to a project funded by the U.S. Department of Education, Office of Special Education Programs and a supervisor of special education student teachers for Lesley University.  From 1986-2014, she directed over 25 federally-funded projects at the nationally-recognized organization, Education Development Center. Her work focused specifically on literacy development, special education, and technology implementation. She has conducted research studies, developed curriculum, created software, designed and conducted online courses and webinars, designed websites, and carried out professional development. In addition to authoring the book, Helping Middle School Students Become Active Researchers, she has written book chapters and journal articles. She frequently presented at national conferences.  Dr. Zorfass received her doctorate in reading and language development from the Graduate School of Education at Harvard University.  She has been delighted to be visiting Israel from Boston for the month of February, volunteering at Shutaf in Jerusalem.

 

Valuing Differences. Guest Blog by: Jenn Smith

Jenn interned at Shutaf during 2013-2014 academic year.  Originally from LA, she lived in Jerusalem while studying in Hebrew University’s Non-Profit Management and Leadership MA program.  Thank you, Jenn!

Jennifer SmithPrior to my first visit to Shutaf’s afterschool program I was warned that most of the kids would speak little to no English, however with two months of ulpan under my belt, I was confident that I would be able to communicate with at least some of them. Boy was I wrong! When I arrived at the program, the kids were all very warm and welcoming, but once they started talking, I seemed to have forgotten all of the Hebrew that I had learned! A young girl immediately approached me to investigate who I was and what I was doing at Shutaf. A staff member not only had to translate for me, but also respond on my behalf. I was not as fortunate other times that afternoon and often found myself frantically searching for help when a child attempted to communicate with me. I was dependent entirely on the English-speaking staff. Not being able to communicate with the kids made me feel useless and completely isolated from the very people I was there to interact with.

As the afternoon progressed, many of the kids seemed to pick up on my limitation or special need, if you will. One boy took my hand and brought me over to where lunch was being served and merely pointed to the items that he wanted and required my help getting. Another girl, who insisted that we work on her art piece together, simply communicated by passing me a crayon and pointing at her drawing. I knew I correctly interpreted her actions when a huge grin spread across her face after I began adding a little jewelry to the ladies in her drawing! She clearly had not yet learned that every woman is in need of a little bling and I was happy to share such an important life lesson with her! After our artwork was complete, another group of kids gestured for me to join them on the floor for a card game that I was unfamiliar with. They demonstrated first how to play and then handed me the cards so that I could have a turn. They were patient when I didn’t catch on to some of the rules immediately and persistent in trying to find alternative ways to explain something when I didn’t understand their hand mimes the first time. Similar instances occurred throughout the remainder of the afternoon and, by the end of the program, I was baffled as to where the time went!

I had never thought of myself as being a person who has a disability, but reflecting back on my first visit to Shutaf, I now see that I was. Yes, it was only temporary and, in the realm of disabilities, doesn’t even begin to compare, but it did give me a quick glimpse into what many of these kids experience on a daily basis and may continue to throughout their lives. The initial feelings of isolation, exclusion, frustration, and purposelessness that endured when I arrived at Shutaf are typical for a person who has a disability. Although adjusting to this new environment and impairment of mine was difficult and uncomfortable at first, having the kids at Shutaf accept and include me despite my differences, made a huge impact and had me leaving with a sense of purpose. This outcome, I believe, can be attributed to the amazing, inclusive environment that the Shutaf staff has cultivated.

Above all else, Shutaf has taught me to value people’s differences by understanding that everyone has something worth contributing. I was lucky enough to be in an environment with kids who are thoughtful, tolerant, kind, and patient, and also embrace this very notion. Unfortunately, this is not always the case. It is important to remember that although you may not know now what it feels like to be a person who has a disability, likely, at some point in your life, you will (World Health Organization). Keep this in mind before you decide to brush off someone who might be a little bit different from you, or even before you choose to park on the sidewalk, making it virtually impossible for someone in a wheelchair to get somewhere they need to be, instead of spending the extra ten minutes it takes to find a parking spot, or before you opt to not make your business, classroom, program, or whatever else, accessible for everyone because it requires a little extra work on your end or might cost a bit more.

A huge thank you to all of the Shutaf staff and Shutaf participants for the invaluable lessons you have taught me over the last year! I will be sure to share those lessons and I hope you and everyone reading will do the same!

Is Accessibility Of Public Spaces So Impossible?

Originally published on the Ruderman Family Foundation blog, Zeh Le’zeh, where it first appeared on February 27th, 2014, in honor of Jewish Disability Awareness Month 2014.

By: Beth Steinberg

As I skied down that gorgeous piste on January 27th, I wasn’t considering that I was about to make myself a living monument to Jewish Disability Awareness Month. That came a few days later, after I fell, had been surgically repaired and was hobbling down the hallways on my brand new crutches in the lovely little hospital in rural Sallanche, France, in the shadow of the majestic Mont Blanc.

Jay Ruderman is fond of saying “everyone in their lifespan will experience disability in one way or another.” He explains further, “people with disabilities are…the one minority group that we will all join one day as we age.” Sobering. A sub-group that we are all likely to experience, whether because of illness, injury or some other aspect of the aging process.

Before you go and stick your head in the sand, consider some facts about disability. People with disabilities are the largest minority group worldwide, an estimated 1 billion people. This is a number that will grow, by the way, as the world’s population grows and as medicine helps us live longer. As a matter of fact, in countries where the life expectancy is over 70 years, people may experience disability for an average of 8 years, or 11.5 percent of their life span. Compelling, no?

I didn’t need to fall that day in order to understand disability. Quite frankly, as a parent to a child who walked at the age of 6, and who continues to need significant assistance navigating his life, I get what disability is about. And yet, to experience firsthand the problems of “crutching” around Jerusalem is to remind myself in a truly palpable way of the challenges that people with physical disabilities in particular experience every day, in a city that is probably one of the least accessible in the world.

Yes, I know that Jerusalem was built 2000 years ago. I get that its infrastructure was not exactly designed by an urban planner and that roads that wind and climb were originally made for mules, not cars. But it’s 2014, and Israel is a country where a certain percentage of soldiers become disabled due to war and army service, separate from those who develop disabilities at different points in their lives and those born with disabilities. It’s time to step up to the plate and force compliance in Jerusalem, as well as in the rest of the country and worldwide, certainly in countries with the ability to support such efforts.

Just recently I was in my favorite local sushi restaurant. On the surface it seemed accessible, that is until I asked to use the restroom, which was down a few stairs. What got left out of the architectural plans and what official signed off allowing the space to open when laws have been set into place that require handicapped accessibility? It boggles the mind. beth-steinberg-walking I’ll bet that almost every restaurant on Jerusalem’s popular Emek Refaim stretch lacks accessible restrooms, let alone accessible entrance ways and pathways. And that goes for one which recently underwent a lovely renovation. On my first visit, I noted that the bathroom is up a flight of stairs. I haven’t gone back.

That’s not all. In Jerusalem, ramps are built at the kind of angles that nobody would want to use them without fear of hurting themselves. Walking paths are continually built from a polished Jerusalem stone that becomes slippery to the point of being downright dangerous during winter rains. And sidewalks remain the favorite place for parking one’s car – never mind pedestrians, babies in strollers, wheelchairs and yes, people on crutches.

Jerusalem, of course, is not alone. For the nine years that we pushed a stroller/wheelchair in urban Brooklyn and NYC we struggled with a mass transit system that wasn’t completely accessible (especially then), as well as with uneven sidewalks and inadequate ramp cuts. I still have lingering elbow problems from maneuvering through snow, over ice, up staircases and through the crowds, in small shops so crowded and narrow I had to leave. I’ve traveled throughout Europe and wondered at the continued inability of major cities – think Rome, Paris and London – to make their cities, their public spaces, their mass transit systems completely accessible. Each one, especially when it comes to mass transit, has complicated access points for anyone dealing with any kind of significant physical disability. If you’ve ever shlepped a suitcase up and down the staircases in the London Underground you know what I’m talking about.

As for me, I’m still getting a handle on this crutches thing. I’ve gone out just a bit since I got home and even the trip to my local health clinic wasn’t exactly a walk in the park, located as it is on a steep street with tough sidewalk access from the car. I’d like to get into work but I’m worried about the elevator to the 4th floor, it doesn’t always work, and the entrance into the building, not so perfectly pitched, and our flooring is a bit uneven. I have a presentation I’m making next week – hoping to find a way to get into the building safely, otherwise I won’t be able to go. Forget about my favorite locations, like the outdoor market, Machane Yehuda, and even my new coffee place around the corner, down a flight of stairs. Until I get more secure handling stairs, it’s just not worth the risk.

But it’s only a couple of months. By April, I should be up on two feet, working at therapy and getting myself back to my crazy schedule of two jobs, working out a few times a week and generally running myself ragged. Because I will be able to – thankfully. What if I couldn’t? Quite frankly, I’d be considering moving out of Jerusalem.

So next time you think to yourself, “We don’t have any people with disabilities in our neighborhood,” consider the possibility that they’re shut into their houses because they’re simply unable to maneuver local streets and byways safely. I say it’s time for a change.

I want excellence. I want opportunities.

I’m the mother of a 17 1/2 year old girl with special needs. As I watch Adina’s peers without disabilities graduate from high school this month, going on to mechina or the army, my heart aches. What future awaits my daughter? She has another 3 years to go in the Israeli special education system. And then what?  Where are her Mechina programs, army options, college track?

vinnyAdina started out by being individually included in neighborhood preschools and elementary school until fourth grade, when she expressed that she was tired of always being “on the side”. We transferred her to special education – Tidhar – a wonderful school for children with severe learning disabilities, as well as emotional and behavioral issues in Jerusalem. She had three excellent years there. But since then, she hasn’t yet found a place that truly answers her emotional needs.

And yet, the bigger question is what happens after the school years? Adina loves to work with babies, horses and dogs – she’s a good worker. Where is the vocational school that will train her to do these jobs, truly believing her capable of hard work and giving her the emotional support she needs to succeed as well as the social framework that a young person craves? Where are the adult education frameworks, and college programs for young adults with special needs, like Adina? Don’t they also deserve to continue their formal education, just like everyone else? Where are the job opportunities for these capable young people?  They are part of our society, even if they think or move a bit slower than most of the rest of us.

For example, the Jerusalem municipality should have a certain number of places set aside for people with disabilities – cognitive and physical – in its city programs. Imagine if the municipality, when planning a complex of discounted studios for artists, set aside a studio or two for artists with special needs. Nobody wants or needs a “Festival Tsamid” – a separate municipal festival for people with disabilities – that just emphasizes difference. It’s condescending, wastes public funds that should be spent on quality services and ultimately and is of no interest to anyone in the broader society.

I want opportunities, excellent opportunities for my daughter. I want people to see and really understand what she CAN do and not only focus on her limitations. Stop separating and feeling sorry for the person with cognitive disabilities! Instead, stretch your mind and open your eyes to believe in that person’s abilities and her inherent right to be an integral part of society. That will benefit the person with cognitive disabilities and even more, will strengthen our society.

It’s time to think about finding a way to integrate people with cognitive disabilities into every walk of life, naturally.  Cafe Aroma does it on a national level. Why can’t the government? It’s not because of limited budgets, it’s because of limited thinking.

Committed to Inclusion

Original article published on March 21st at 11:55 by Merav Ceren for The Jerusalem Post’s “In Jerusalem”

Camp Shutaf, an informal education program, fills a niche for children with special needs.

Beth Steinberg moved to Jerusalem from Brooklyn with her husband and three sons in 2006. She knew she’d have to fight an uphill battle for her youngest, Akiva, who was diagnosed with Down syndrome at birth. Education for children with special needs is also challenging in the United States, but Steinberg did not expect what she described as a completely absent culture of informal education and a dearth of options for after-school enrichment programming.

This lack of services by both the Jerusalem Municipality and private after-school programming drove Steinberg to partner with another local mother to found Shutaf, a Jerusalem-based informal education program for children and teens with special needs.

Faced with a long summer vacation in 2007 with no real options for Akiva, she turned to members of a special-needs parenting support group for advice.

There she met Miriam Avraham, who also felt frustrated by the insufficient options and resources available for her daughter, Adina. Both alumnae of Jewish summer camps in the United States, the mothers said it seemed natural to adopt the model they were already accustomed to when they decide to set up Shutaf.

Steinberg and Avraham both point to their camp experiences as formative and credit summer camp with kindling their passion for informal education and instilling a commitment to inclusion of all children, not just those with special needs.

Together, the women planned the first Camp Shutaf in August of that year and hosted 10 participants. The camp was more successful than they expected.

“By the following August, [we] had more than quadrupled in size,” Avraham says. They believe Camp Shutaf fills a niche sorely lacking in the Israeli education system, which is indicative of the country’s inadequate philosophy toward special education.

The Education Ministry runs schools that provide services for and educate children with special needs, who are divided into one of three categories – those with delayed development; autism; and all other groups. Funding for programming is assigned separately to each group, and does not encourage integration among children with different special needs, or of these children into the general population.

Special-needs children are assigned to schools that are often far from home and inadequately managed, according to Shutaf. Avraham goes further, stating that the municipality’s department of after-school activities for children with special needs, Tzamid (an acronym for “special needs” in Hebrew) spends most of its resources on a once-a-year festival that highlights special-needs organizations instead of providing services year-round.

Officials at the municipality point out that the Jerusalem education system responds to the needs of all pupils, aged three to 21, experiencing all levels and types of disabilities, including ADHD, Down syndrome, autism, sensory impairments, and other learning disabilities.

“Jerusalem represents the most advanced system of special education in the country and aims to integrate children with special needs as much as possible, both on an individual and school-wide level, with classes running alongside regular elementary school and secondary school classes,” said a Jerusalem municipality spokesperson, who did not respond to specific criticisms leveled by the Shutaf founders.

Shutaf contends that the lack of integration of those with special needs causes a division within communities. Steinberg claims that when communities are split and children are sent to segregated classrooms that are “out of the child’s neighborhood, in poorly maintained school buildings, many of them non-compliant in terms of accessibility,” the city is inherently signaling that these children are different and in some ways inferior to their traditionally educated counterparts. This separation indicates an implicit difference, at least in official policy, between a child with special needs and other children.

The numbers indicate that Israeli society regards the special-needs community as separate from the mainstream. Of 605 Israelis surveyed, 52 percent said they wouldn’t want to meet or get to know someone with a cognitive disability. Sixty-seven percent said they wouldn’t know how to respond to a person with a cognitive disability, and 25% think that people with a cognitive disability are violent or aggressive, according to a January 2013 poll by AKIM Israel, the Association for the Habilitation of the Intellectually Disabled.

This is precisely the type of discrimination Shutaf works to remedy through its inclusion programming.

The organization now runs a year-round inclusive program for youngsters aged six to 21, with camp three times a year; after-school programs that include a youth group, a cooking workshop and a young leadership program; and a support group for parents.

Shutaf camp groups are made up approximately 75% of children with a wide variety of special needs and the other 25% are typically developing children.

Shutaf just held a Passover camp for 50 participants this year at the Natural History Museum, and is proud of the growth of its year-round after-school programming.

Reflecting on the current state of the program, Steinberg remarked “what had started off as a small program for our own children developed into something much bigger and more important.”

Where’s the money for all people with disabilities?

The original Op-ed appeared on March 27th, 2013 at 18:33  in the “Israel Opinion” section of Ynetnews.com. By Beth Steinberg, Miriam Avraham.

JTA editor’s pick on March 29th. Translated into Hebrew on Haaretz.

Ministers must show they believe in the right of people with disabilities to excellent services, dignified lives

Listen up, Bibi, Yair, Shai, and Naftali. Autism isn’t the only disability in need of attention. Will 2013 be the year that the Israeli government puts the needs of all people with disabilities front and center – men, women, children, and their families – who deal with disability; cognitive, physical, emotional, each and every day?

Will new government officials and the funding bodies they represent, the Ministries of Finance, Education, Welfare and Health, be willing to admit that Autism is only one in a long list of disabilities in need of proper attention?

Autism has become the label of the moment – the cause célèbre, if you will – in the world of disability, pushing aside the needs of all people, children in particular, with other developmental disabilities. It’s an inequity that has caused a growing need in many an overburdened municipality such as Jerusalem, a city that lacks the funds to properly handle educating and supporting the growing numbers of children diagnosed with a range of learning issues that include Autism spectrum disorder, as well as other developmental challenges. That means quality programs, including school, after school, and day camps during longer vacation periods for all children and teens.

Parents have proved to be a powerful force in the world of Autism, in Israel, as in the rest of the world, lobbying, demanding and receiving specialized classrooms within general education schools as well as longer school days, and a school vacation schedule that is much more comprehensive year-round than children with cognitive disabilities, severe learning problems, and emotional/behavioral issues receive.

Furthermore, many of the specialized programs for students with Autism are held in general education facilities, giving those children opportunities for inclusion alongside their typical peers that is rarely offered to children with cognitive and physical disabilities.

Social services programs such as the National Welfare Institute, Bituach Leumi, which assesses and offers monthly stipends to children with known and identified labels, gives the full 100% of the monthly allotment allowed to children with Autism, regardless of their independent living skills and overall cognitive issues, compared to their peers with known cognitive labels, such as Down syndrome, for example, who generally receive 50% of the full monthly grant.

Children with disabilities that are not as easy to label often receive nothing, even though they may be enrolled in special education schools and have needs are no less complicated. Without that all important access to government funds that parents and caregivers use for therapies and equipment not covered by government health services, most are left high and dry unless their families have the extra funds on hand – most don’t.

They were elected to lead

Reassessing how government agencies divvy up people with disabilities in order to provide support services is critical if all are to have equal access to the help they need. Currently, the three available designations, Autism, cognitive disability and rehabilitation (an all-inclusive label that truly means nothing), create barriers that limit access to a range of programs both social, educational and vocational, for adults as well as children.

Two weeks before the recent election, Prime Minister Netanyahu said that his government would put together a “special plan” for dealing with people with Autism. Yair Lapid’s Yesh Atid party, made Autism funding a critical part of the deal they cut before entering the coalition, something that many would describe as sector-based legislation, an old-style way of doing politics that many would like to see ended.

While it’s great to see attention paid, and monies apportioned, why just Autism? What about the thousands of Israeli adults and children with other disabilities? Since when did their needs become any less important than others, and what kind of message are we sending to them and their families, as well as the greater society, who still needs to be encouraged to include and not to fear people with disabilities?

No parent struggling with disability would argue the need for school services, quality afterschool activities and appropriate vacation programs but it is unclear why so much has been given to one population in need.

It is well known that a number of our governmental leaders have family members with disabilities. We applaud those who’ve talked about it honestly and we respect those who’ve chosen to protect their family members. But the time has come to act.

We demand that Israeli leaders put the needs of all Israeli citizens with disabilities on their platforms. A leadership opportunity exists for that person and party who stands up and makes the issue their own, encouraging the removal of stigmas and barriers as well as finding the necessary funds to help all people with disabilities. They were elected to lead – morally and legislatively – and not shy away from difficult issues such as disabilities. They were elected to take a stand, to inspire and to lead by example – the best and only way to make a difference.

Ministers, set an example. Show that you care about ALL people with disabilities. Show that you believe in their rights to excellent services and to a life lived with dignity.

It’s time. It’s time for all Israeli leaders to publicly and unequivocally pledge their commitment to all Israelis, and to include them in the greater society. Not because we pity them but because they have equal and inalienable rights, regardless of difference.

A leadership that is able to harness the energy of the government, non-profit sector and public to ensure fairness of resource distribution and opportunities will make Israel a better place for all, and a light unto nations around the world – imagine that.

Embracing Independence

I almost can’t believe it. Adina is taking the Jerusalem city bus home from school. For a 16-year-old girl with Down syndrome, this is a HUGE step and can only happen if she has been properly prepared and taught how.

That’s where Shutaf comes in. Adina has been part of the Shutaf Teen Explorers’ program since its inception in summer 2010. The purpose of the program is to help young teens with special needs transition into this next stage of life, to see beyond their own, everyday worlds and realize that they can be part of the bigger community.

During Shutaf camp sessions, the kids take city buses together, visiting places of business, volunteering, learning self defense skills – taking a closer look at the community around us. Taking the bus together with her Shutaf friends and staffers was the perfect introduction for Adina to what can be a scary first time experience for any kid. Sure, she had taken public buses before with us but with Shutaf she learned to pay for herself and figure out where she wanted to sit or stand on the bus – without Mom taking the lead.

Most of the kids in her special ed. class ride the city buses and Adina decided she was ready to give it a try. I was excited by her initiative and ready to help her make it happen. I accompanied her on the school-home route five times and then she was ready to solo, equipped with a bus ticket and a cell phone. She’s been acing it – handling the crush on the bus calmly and completely sure in her knowledge of when to push the button and when to get off the bus.

My only concern is the unexpected and then it happened. This week Adina missed the bus for the first time. She has her own pace in life and I’ve never figured out how to rush her – it’s simply impossible. Know what she did? She called mom. The absolute right move. Yes, she was crying and upset but she problem solved and made the call. I was able to talk her through it, making her understand that she has to relax and be patient and wait for the next bus. Three calls later, she was on the bus – thrilled to have successfully managed the setback and quite proud of herself. Will she walk to the bus stop faster next time? Stay tuned…

Seemingly Small Steps

My daughter Adina hasn’t missed a Shutaf camp session yet – she’s been to all 13 of them since our first summer camp in August 2007. She was my reason for creating Shutaf with Beth Steinberg and embarking on this incredible journey together with our staff and all the children who have enjoyed many hours of quality inclusive programming at Shutaf.

Adina’s group, the Chokrim (Explorers) are an inclusive group of young teens who leave camp to go about town, learning independent living skills like riding a bus, paying for a snack, volunteering at a soup kitchen, self defense skills as well as learning about the wider community. Finding out what potential jobs are there? What does a hotel look like behind the scenes?

I love seeing Shutaf lessons brought home. Adina, 15 ½ , has always been hesitant to hold money in her hand, let alone feel confident enough to conduct a purchase on her own. At Shutaf she’s been learning how to make a simple purchase by herself with staff support. What an incredible opportunity.

Yesterday, we were having lunch at a local pizza parlor, enjoying the last day of summer vacation together. After lunch, Adina wanted ice cream for dessert.  I gave her the money and told her to go inside and buy it. Instead of her usual “you do it”, she agreed! Wow! In our world, that’s a tremendous breakthrough, close to a miracle… and it is thanks to Shutaf.