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

Advertisements

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!

“Shutaf is a family.” Guest blog by Jenny Kaufman

jenny

Shutaf is a family. I’ve seen it in action each and every day that I come into
my internship. My name is Jenny Kaufman and I have been interning at Shutaf for the past four weeks or so. I came to Israel on a program called Onward Israel, which partnered with the overnight camp that I am a counselor at in America. In order to supplement our summer as camp counselors in America, my camp delegation decided to send eleven college aged students to Israel to pursue internships and allow us to live in Israel in hopes that we can bring a piece of Israel back to camp
with us. One of my favorite days interning was when I had the opportunity to go
and hang out with all the kids in Shutaf at youth group. Although I speak basically
no Hebrew, the language of smiles, high fives, and simple gestures made it easy
for me to communicate with all the kids at Shutaf. The friendly, all-encompassing
environment made it easy for even I, a foreigner, to feel included and welcomed in
their Shutaf family.

When I was at Shutaf’s youth group, I had the chance to play with live
animals that had been brought into youth group for everyone to pet and hold. One
of the animals that came was a little baby turtle that had to be the fastest turtle
that I had ever seen. When he was placed on the ground he could outrun any of the
rabbits there. After about a half an hour of playing with the animals that little turtle
went missing. Nobody seemed to know where he had gone. Maybe your average
group of people wouldn’t notice if a tiny little turtle about fifty millimeters long
went missing, but this was no average group of people, it was Shutaf, and Shutaf
took notice. Everyone stopped what they were doing to search the room from top
to bottom until the turtle was finally found hanging out underneath a hat on the far
side of the room.

As I conclude my time here in Israel, I know that there is one clear lesson
that I will bring back to America with me from my experience interning at Shutaf:
inclusion. Whether it means including a little baby turtle, children with a variety of
different needs, or a foreigner like myself, Shutaf does it all. Shutaf has given me a
greater appreciation and understanding for what inclusion really means and how
much it can impact everyone. I will be headed off to overnight camp in a few short
days where I know that this value of inclusion will become even more significant
in my life. This summer it will be my personal goal as a counselor to make each
and every camper at camp feel welcome and included and a part of my own camp’s
family.

A Vegetarian on Israel Independence Day

Written by Miriam Avraham this post was originally appeared on April 23, 2012.

Morris and Martha Herman, ahead of their time.

Morris and Martha Herman, ahead of their time.

My dad was ahead of his time. He chose to become a vegetarian in the 1930′s, no doubt influenced by Harav Kook’s philosophy of vegetarianism as an ethical way of life. My dad believed that being mindful of what we eat together with daily exercise was the path to a healthy body, mind and spirit. You might say “duh!” today but he was living according to these principals at a time when everyone around him was eating steaks every night, smoking, drinking and living extremely sedentary lives. He maintained a vegetarian diet even during his service in the US army in WWII – telling us stories of how he dreaded KP (kitchen patrol) during basic training – “The chazer, uch!”.

Thanks to my dad, I’ve been a vegetarian all my life. But I wasn’t always grateful. As a kid growing up in suburban New York, the question kids most frequently asked me was “You’ve never had a hamburger?”. The answer was and still is “No.”. We didn’t even eat peanut butter and jelly sandwiches. My mom’s definition of a sandwich was a two inch pile of lettuce with some cheese. There was nothing to trade in my lunch box. Talk about weird. Being a vegetarian kid in the 60′s and 70′s was weird. I only started meeting other vegetarians as a teen when friends started ‘converting’.

Since there was never a vegetarian option at events, my mom would give us dinner before we went even to the fanciest of weddings, a habit I’ve only recently been able to break. Camp was a real problem since we weren’t just “non-meat-eaters” we were “healthful eaters” and that was in direct opposition to camp fare.

The list of how growing up vegetarian set me apart is long and having passed the “torah” on to my children and grandchildren, the sense of difference gets passed along too I think.

Every year in May I wonder how Yom Ha’atsmaut became the day of burnt offerings. It’s a relatively recent phenomenon since I remember people just enjoying nature, picnicking, going to the beach. My fondest memory of Yom Ha’atsmaut when I first arrived was riding bikes to the beach in near empty streets and having a picnic without the stench of “mangals” burning all around me. I think Israelis see the barbecue as a sign of affluence and I know people love it with a passion. I guess I will always be looking at this minhag (tradition) from the side, with a perplexed look and a nauseous feeling in my stomach.

יום האישה הבינלאומי בכנסת – 3 למרץ 2014

Beth Steinberg, Shutaf co-founder, speaks at the Knesset Aliyah Committee in honor of International Women’s Day

Knesset Day!

 

תודה לכולכם – חברי כנסת מכובדים, ועדת העלייה, עולים חדשים וותיקים, אורחים. טוב להיות כאן היום, לכבוד יום האישה הבינלאומי.

לפני קרוב לשישים ושש שנים, אבא שלי הפליג בספינת הSS Marine Carp. מה היתה המטרה שלו? להגיע ארצה ולעזור למדינה החדשה. הוא לא הצליח – זה סיפור אחר – אבל ב2006 כשעליתי ארצה עם בן זוגי ושלושת הבנים שלנו, סוף סוף כל המשפחה המורחבת שלי הייתה במקום אחד – בארץ ישראל. אבי ז״לֹ ואמי בירושלים, אחי הגדול ומשפחתו בכוכב יאיר, אחותי הגדולה בראש העין, אחותי הקטנה בירושלים – במרחק הליכה של כמה דקות מביתי.

הייתי בת 44 ובעלי בן 45. עלינו עם ילדים גדולים. לא ידענו מה מחכה לנו ואיך החיים שלנו ייראו. ידענו שתמיד אפשר לחזור לברוקלין. (לא לדאוג – אנחנו לא חוזרים)

היום, כשאני מסתכלת אחורה על שבע שנים של עשייה, אני אומרת Wow. יחד עם השותפה שלי, מרים אברהם, ייסדנו את ״שותף״ תוכנית שילוב לילדים ובני נוער עם צרכים מיוחדים. תוכנית איכותית שעונה על הצרכים של כ150 ילדים – ילדים עם צרכים מיוחדים יחד עם ילדים רגילים לגמרי, פה בירושלים. ב״שותף״ בונים עתיד טוב יותר, עתיד משלב יותר, עתיד שבו כולם עובדים, לומדים וחיים – ביחד – בלי להתייחס לתוויות או רמת תפקוד. חלום טוב.

אז הסתכלתי למשהו אחר שגם חשוב לי – תאטרון.

ב2010 הקמתי, יחד עם אומני תאטרון, את ״תיאטרון בתזוזה״.  ״תיאטרון בתזוזה״ מביא לקהל הירושלמי חוויות תאטרון איכותיות, שוות-לכל-כיס, מיידיות ומרתקות. ההופעות מוצגות במקומות יוצאי דופן ובלתי צפויים – בפארקים ובמקומות ציבוריים אשר נגישים לכולם. בקיץ 2013, יותר מאלפיים ומאתיים איש הגיעו לגן בלומפילד בירושלים ליהנות מהצגה באנגלית –  ריצ׳רד ה3, המחזה השייקספירי המוצג ביותר בעולם.

נשמע טוב? נשמע מעולה. אבל יש עוד מלאכה חברתית בארץ ובמיוחד בירושלים. למדתי כאמא של ילד מיוחד שחייבים לעבוד במשותף כדי לבנות חברה תומכת, חברה שחושבת על כל אזרח, על הזכות של כולם להצליח ביחד.

מקוה שנשב שוב בעוד כמה שנים ואעדכן אתכם לגבי ההתפתחויות ב״שותף״ וב״תאטרון תזוזה״, או אולי לגבי משהו לגמרי אחר!

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.

More must be done for kids with disabilities

Original article from the Israel Hayom Newsletter on Monday February 25, 2013. By Miriam Avraham and Beth Steinberg.

February is Jewish Disabilities Awareness Month, a time when Jews around the world come together publicly to raise awareness and support for people with disabilities and their families. In Israel as well as worldwide, families and children are isolated and marginalized by disability; in their synagogues, schools, neighborhoods and workplaces. Fear, inadequate education, as well as a lack of meaningful opportunities for integration, prevent understanding and connection between people, an effort which must begin in childhood.

For Israeli families coping with disability, February is an anxious month as the lengthy Passover vacation looms only a few weeks away. Parents are faced with an impossible situation — close to three weeks of school vacation, with limited or no programs available for kids with special needs who can’t be left alone at home to cope like their typically developing peers.

And it’s not just during Passover vacation that this issue complicates the lives of families. Children and teens with special needs are in need of quality informal education programs year-round, especially during longer school vacations.

Who gets needed services in this country? Children with more significant disabilities benefit from longer school days and shorter school vacations but there’s a whole population of children and teens with special needs, many of whom are educated in special education frameworks, who are considered less needy by the Ministry of Education and the Ministry of Welfare. This population often lacks traditional developmental labels to describe their needs — they receive fewer services and their school schedules are much like those of typically developing children. After school and camp programs meant for typical kids don’t work for this group, which requires a more structured environment and individualized attention.

The issue is further complicated by government funding resources that are determined per child and per disability, an approach that often precludes inclusion of any kind. It’s simply easier to keep kids segregated according to their disabilities — in school and in after-school programs. With this model in place, after school often consists of a class of kids who are bussed to a local community center, or provided with activities in the building where they spent most of their day, an approach that limits all children socially and developmentally.

The government’s approach to this population in need is short sighted and ultimately flawed. A planned and proper investment of time and resources, along with a thoughtful informal education response for these kids and teens would help ensure their future success as capable adults in the greater society.

It is time that the Israeli educational system recognize the need and value for quality, informal education programs, a goal that will serve everyone — children with special needs along with their typically developing peers. The vast majority of existing informal education programs in Israel for children are unprofessional, often staffed by teens with limited training and mentorship, with a high camper-to-staff ratio. As for programs for children with special needs, the educational approach is far from therapeutic; in fact, it’s not much more than babysitting. Sadly, a huge educational opportunity is being missed.

This is not just Israel’s problem. Today, every country worldwide is challenged by the question of how to best meet the needs of people with disabilities. It’s time that the government and the greater community remember to include those members with special needs, as well as to provide quality services that promote mutual respect and understanding between all people.

The Jewish approach to disabilities has always been compassionate, although not always enlightened, held back by the push for success especially in modern times. As Passover approaches, let’s recall that the Jewish people’s most important leader, Moses, had a speech impediment, a special need that he felt cowed by when accepting the yoke of leadership.

Diversity is the key to a healthy, strong and just society. Let’s all join together and make it happen today.

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.

A Pure Heart

In this soul searching season, I’ve been thinking a lot about how I’ve changed my attitude towards parenting when it comes to Adina. For so many years – about 15 – I worked tirelessly to get her every possible therapy, work with her at home on building her skills and for a while I was even teaching her math when I realized the school system was unequipped to do so. I would say a prayer when lighting my Shabbat candles that she be the most she can be.  There was never a question in my mind that I had to do EVERYTHING I could to ‘move her ahead’.

But lately I’ve been wondering how this all effected her. Something her new homeroom teacher said to me in a meeting before school started clarified this even more. She was talking about how the school’s approach is to encourage change and I got a shiver down my spine. I replied that I believed real change comes from within. To the teacher’s credit, she agreed.

It was then that I realized how much my attitude had changed. As Yom Kippur approaches, I spoke to Adina about fasting – she knows everyone around her fasts and for a while after her bat mitzvah I thought I had to encourage her to fast as well. But she wants her drink of water before going to bed and she needs to have lunch the following day. I’ve always gone along with this thinking some day she’ll ‘get it’ and want to try and fast the whole day.

But now I finally ‘get it’. She doesn’t need to fast. She doesn’t need to review her actions and her thoughts of the past year. She doesn’t need to repent. She doesn’t need to clean her slate. She has a purity of heart that the rest of us can only yearn to achieve.  She accepts other people for who they are – let’s them just be.  If you’ve never been in the presence of someone like Adina, taken the time to get to know her, you might not even be able to grasp this concept – it is so unique.

While I’m a bit sorry it’s taken me this long to realize all of this, I’m grateful for having finally understood in my heart that not only should I let her just BE but that I need to aspire to be more like her.

I’ve updated my candle lighting blessing for her – I pray that she will be happy and love herself just the way she is.

G’mar Chatima Tova