Okay, I know I can be a bit defensive, bristly almost, when it comes to talking about almost anything that I care about. I own that. When it comes to disability and inclusion, I can go a little overboard, but someone’s got to do the dirty work, right?

We were at a meeting: me, my Shutaf team members and with a respected colleague whose expertise is including children with disabilities in educational settings. In a discussion of how to create a program of outreach, education and inclusion for Jerusalem teens, with and without disabilities, she corrected our organization’s definition of what we call inclusion, explaining that facilitating the entry point of people with disabilities into the community of the typical, that is, us, those without a disability, is the only way to describe the term.

I was shocked and upset at having Shutaf’s “reverse-inclusion” model questioned. Okay, maybe a bit defensive too, as my team members pointed out after the meeting. At Shutaf Inclusion Programs in Jerusalem, we serve children and teens with special needs – a broad range of issues are included together – along with their peers who don’t have special needs at a ratio of 3:1. Meaning, those with disabilities outnumber their peers without disabilities, an admittedly unorthodox model. Our aim is to offer the best possible program for both populations, regardless of their differences.

So, when I hear that there’s only one way to include or only one way to define how we include, I get offended. It makes me realize how far we have to go in order to relax, stop defining and just start including. I’m always reminded what Professor Arie Rimmerman, an international figure in the field from the University of Haifa, noted when he visited our summer program last year. He said, forget about definitions and models and ratios, explaining “inclusion means everyone finding their place.” And that means all of us, with all of our issues and frailties, successes and failures, belief systems and cultural backgrounds. I like that, don’t you?

Recently, I wrote about expanding the terms used to describe people with disabilities, or better yet, our acceptance of a greater variety of terms used to for people with disabilities — special needs, cognitively disabled, or, whatever the moniker of the moment is — along with the services that the community offers.

Inclusion has to be a two-way street, an eight-lane highway, and not a four-way stop sign. People with disabilities have limited access to everything: schools, after school, camps, employment, living in the community and beyond. I’m not kidding, here. They really do. “He’s just not independent enough for this program,” I remember being told some years ago about my son. This without even meeting him.  Or, my other favorite line “is he high-functioning or low-functioning?” Funny, you should talk about him with his teacher of the past two years, his best critic but his biggest fan.

Again, it always seems to come down to semantics, as opposed to really making the world a welcoming place for all. Now, in truth, this colleague and I are on the same page, and as we continued our conversation we worked through the chaff, ultimately finding a meeting point that will allow us to reach more teens — with and without disabilities — giving them a chance to see themselves as young leaders, as movers and shakers in the fight for equality for all.

I’m raising the banner for inclusion in the broadest sense. Both my colleagues in the disability community and the rest of the world needs to see my flag, and yours.  Join me and be visible, verbal and upfront about why inclusion matters to you.

Special needs. Developmental delay. Cognitive disabilities. Disabled. Learning disabilities. Retarded. Autistic. Mentally challenged. Slow. Special. Blessed. Pure of soul.

Language is power. From the first words we form as toddlers, making our needs and wants known, to the daily information we share online, from 140 characters on Twitter and beyond, language has meaning and weight. The better we can say it, the stronger our positions, our beliefs and our passions, whatever they are.

Language can also constrict, preventing the honest sharing of our thoughts, especially if we fear putting our collective feet in our mouths. In these politically-correct times, language has become increasingly dangerous, as descriptive terms and labels change at a pace that many find hard to keep up with, let alone understand and accept. Heeding the dictates of the language police is not only recommended, it’s required, or you’ll suffer the ignominy of using the wrong term.

A colleague who’s involved in the development of camp programs for children and teens with disabilities in the United States had an uncomfortable moment recently when she used the wrong term in a discussion about people with disabilities. After being chastised by a fellow advocate, she commented to me, “I want to use the right language, of course, but I don’t want to feel like I can’t speak for fear that I’ll offend.” Even worse, as a parent of children who do not have disabilities, she already felt tentative when talking about it, wondering if she had the right to express her opinion. Now, she’s just uncomfortable, worried that she’ll do it again, use incorrect language.

I know how she feels. Recently, I was summarily informed by a colleague that there had been a language shift in the field of disability. “Didn’t you know, that it’s people with disabilities now, and not people with special needs?” she told me. I adjusted my speech right away, but was put off the more I thought about it. What word is truly right, and who gets to decide what’s in vogue or not?

Ever since my youngest, who has Down syndrome and autism, was born, I’ve felt the need to be blunt about how I talk the talk of disability, especially when it comes to developmental issues. Take the word retarded. According to my Google dictionary, retarded means “less advanced in mental, physical, or social development than is usual for one’s age.” Okay, check. I also like this use of the word retard, when referring to bread baking as in “to slow down…[as in] a long, cool rest for the dough, during which it develops flavor and gluten.” Interesting. Needs time to develop in all sorts of ways. Checkmate.

Point is, “retarded” isn’t an evil term, it’s a descriptive term. When used pejoratively, of course, it isn’t acceptable, any more than “Mongoloid” was when it was used to describe the somewhat Asian features of kids with Down syndrome, or “Spick” for a person of Latino background. And I’m not arguing that language shouldn’t change along with attitudes towards inclusion and people with disabilities in general. What I am arguing is just this: If we’re looking to break down barriers, let’s not raise new ones by fiddling with the language so much that people are afraid to open their mouths.

When I talked about the new terminology with my Shutaf co-founder and colleague, Miriam, she commented that she preferred special needs to disability. Special needs, she argued, is what it’s about, that is, “the unique issues faced by each person,” as opposed to the perhaps harsher term, disability. She added that special needs also refers to the family as well, dealing as they do with the member of the family who has a specific issue. Or, in the words of my husband, “families of children with special needs, have special needs.” They’re not disabled by disability, but they are rendered special by the experience. It’s got a nice ring, I think.

With that in mind, I hereby suggest that we react more sensitively when we hear a term that we consider questionable when it comes to disability. Consider that the person who used the term may actually feel a connection to that word. Or they may not realize that the language has shifted. Or they might not know that the word is no longer in style, or that using it suggests they are insensitive or ill-informed.

Education and engagement will go a long way towards bringing us all together, while challenging all of us as a community of caring individuals to step up and use our words wisely, just like we encourage a toddler to ask and not point. Language is the point of contact. But tone and the desire to learn is more important than what’s the newest flavor in the disability lexicon. That’s how we’ll create a more inclusive and welcoming society in which well-intentioned people feel at home no matter what language they use.

During my senior year at Brandeis, I felt an unshakable yearning to study Torah in Israel before I begin rabbinical school at the Jewish Theological Seminary. As I settled into life in a Jerusalem yeshiva, I realized that my Torah learning would not be complete unless I found a volunteer program through which I could serve the Jewish people on a tangible level. For me, Jewish spirituality is not contained to the synagogue or beit midrash, but only really comes alive in the service of others. Invigorated by the summer I spent working with the special needs program at Camp Ramah New England, I was eager to develop my passion for Jewish special needs education. Shutaf was the obvious choice.

My first few weeks of volunteering at Shutaf were overwhelming. Working in special needs is always challenging, but limited by my fairly basic Hebrew vocabulary, I was worried that it would be impossible for me to genuinely connect with my students and fellow counselors. Over these last few months I’ve found my worry completely dissipated as I’ve grown into a welcoming community of incredible and fun loving children and an equally inspiring staff. I often feel as though the language barrier is completely irrelevant, and I’m amazed to be able to form friendships with the children on a much deeper and more meaningful level. Whether we are dancing and singing, doing puzzles, or making freshly squeezed orange juice, the joy and fellowship of the Shutaf community shines through and makes our whole day brighter.

Working with Shutaf has made me more passionate about special needs education than ever before. I can’t wait to bring the knowledge, experiences, and friendships I have gained at Shutaf to other communities as I continue along my path toward the Rabbinate.

Flying into Los Angeles I am filled with envy. I am meeting with Jewish community leaders involved in disabilities issues and I am keenly aware of the work that is ongoing in this area. From the activities surrounding Inclusion Awareness Month, the Federation’s excellent blog, The Better Together Inclusion Conference and the Mission to Israel which focused on best practices for community inclusion, there is much to proud of.

As a disabilities-rights activist, the co-founder of Shutaf (partner in Hebrew), an inclusive, informal education program in Jerusalem, and a mother of a teen with Down syndrome, how I wish I were coming to Los Angeles to share Israel’s advanced attitudes and wisdom with people who have disabilities. Like so many Israelis, I wish that I was thrilled not just with our newly elected government in Israel but with their respective platforms on the rights of all people with disabilities. I wish I could tell you about conferences dedicated to including people with disabilities in Israel – in schools, camps, after school programs, universities and the workplace. Sadly I cannot.

There is very little formal outreach, let alone mentorship and training for educators in the field – both in traditional settings as well as informal education – regarding inclusion.

When conferences on disabilities do take place they are more often than not for specific disabilities only – inclusion isn’t present when it comes to the division of people with disabilities in Israel, let alone in the greater society. Our community is, for the most part, fragmented and weakened by fear, by the fear of association with the other who has a disability different than ours.

Another issue in Israel, as in the United States, has been the rise of Autism to the top of the “disabilities heap.” Autism has become the label of the moment – the cause célèbre in the world of disability, pushing aside the needs of all people, children in particular, with other developmental disabilities.

This inequity, one that’s reflected in the generosity of municipal and government coffers, has caused a growing need throughout Israel and particularly in poorer municipalities such as my hometown of Jerusalem. This is a city that lacks the funds to professionally 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 disabilities. As for quality inclusion programs including schools, after schools, and day camps for all children and teens – with and without disabilities – they are few and far between.

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 than children with cognitive disabilities, severe learning problems, and emotional/behavioral issues receive. As well, 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.

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 last 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.

It is well known that a number of governmental leaders have family members with disabilities and we applaud those who’ve talked about it honestly and we respect those who have chosen to protect their privacy. But we are now demanding that Israeli leaders put the needs of all Israeli citizens with disabilities on their platforms.

If they do, perhaps the community will be able to come together, as you are, in Los Angeles.

We have much to learn.

Beth Steinberg is the co-founder of Shutaf Inclusion Programs in Jerusalem, providing year-round activities for children and teens with special needs, ages 6 to 21. www.campshutaf.org

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.

אימהות לילדים עם צרכים מיוחדים התקשו למצוא מסגרת עבור ילדיהן בחופשות. הן הקימו קייטנה ייחודית המשלבת גם ילדים “רגילים”. “ההורים שמחו והילדים הרגישו שיש להם מקום”
תגיות: צרכים מיוחדים,קייטנה,פסח

מרים אברהם ובת’ שטיינברג, שתי אימהות לילדים מיוחדים, סירבו לקבל את המציאות בה לילדיהן אין תעסוקה בחופשות והחליטו לעשות מעשה. “נפגשנו עם כמה הורים והבנתי שכולנו מחפשים פעילות איכותית לקיץ עבור הילדים, וחוץ ממחנה לשלושה ימים פה ושם אין מענה”, מסבירה אברהם, מעצבת גרפית, שכמו גם חברתה שטיינברג שבבעלותה קייטרינג מצליח, עלתה לארץ מארצות הברית. “המצב חזר על עצמו מדי חופש, ובסוף נאלצנו לקחת חופש. הבנו שהמצב לא יכול להימשך וצריך ליצור קייטנה לעצמנו, שתיתן לילדים כל מה שהורה רוצה שיהיה לילדיו במקום כזה”.

“הבנו שהמצב לא יכול להימשך”. אברהם ושטיינברג (צילום: טלי מאייר)

בשנת 2007 החלו אברהם ושטיינברג להוציא לפועל את הרעיון ופנו למוזיאון עין יעל, שנעתר והעניק את חסותו לקייטנה קטנה שייסדו. “התחלנו עם עשרה ילדים וארבעה מדריכים שהעבירו שבועיים של כיף במקום”, מספרת אברהם. “ההורים שמחו והילדים והנוער הרגישו שלראשונה יש להם מקום שאליו הם משתייכים”, מוסיפה שטיינברג. לדבריה, “מה שהתחיל כמיזם פרטי שמטרתו הייתה לשרת את ילדינו הפך לדבר הרבה יותר גדול וחשוב מזה”.

כל אחד משלם על פי יכולותיו

ואכן, אחרי שנה וחצי הרגישו השתיים בשלות ויצאו לדרך עצמאית. “לקחנו את הזמן ללמוד את המקצוע, מה עובד ומה לא, ורק כשהרגשנו מוכנות הקמנו עמותה – “שותף” שמה – ויצאנו לדרך עצמאית”, אומרת אברהם. “האמנו שאנו צריכות להציג גישה מקצועית שתבטיח חוויה חיובית לילדים, שקיפות כלפי תורמים ותמיכה להורים. היה לי חשוב להבהיר להם שאנו שונים ממקומות שצצים מדי פעם ומציעים קייטנה, שבניגוד אליהם אנחנו לא בייביסיטר, ומדריכים מלווים את הילדים בהסעות ולא סתם אנשים שאספנו. אחרי שנה פתחנו קייטנות של 40 ילדים”.

“הפתרון הכי טוב שאנו מצליחות להציע” (צילום: טלי מאייר)

מרכיב ייחודי נוסף בקייטנה, המיועדת לילדים ומתבגרים עם צרכים מיוחדים בגילאי 21-6, הוא העובדה שהיא כוללת גם ילדים עם התפתחות רגילה – דבר התורם רבות בפן הטיפולי בפעילויות. כנשים שהגיעו מרקע של מחנות קיץ יהודיים בחו”ל הכירו אברהם ושטיינברג את חשיבות החינוך הבלתי פורמלי-מקצועי ואת השפעתו, ולא התכוונו להתפשר. “אנחנו לוקחות צוות אחרי צבא בלבד, עם הכשרה מתאימה כשהמימון שלנו מגיע בעיקר מתרומות בחו”ל”, מסבירה אברהם. “הילדים נחלקים לשתי קבוצות על פי גילאים והפעילויות כולן מועברות על ידי אנשי מקצוע וכוללות תכנים מגוונים. בנוסף, הבוגרים יוצאים לסיורים במקומות עבודה אפשריים לעתיד, עורכים התנדבות קבוצתית, מטיילים ואף לומדים הגנה עצמית, שכן מדובר באוכלוסייה הנחשפת לאלימות פי ארבעה מהאוכלוסייה הרגילה”.

אחרי טבילת האש הרחיבו השתיים את מועדי הקייטנות לשלוש פעמים בשנה – בחנוכה, בפסח ובחופשת הקיץ. לאור הקשרים שנוצרו בין הילדים והנוער החליטו שטיינברג ואברהם לקיים פעילויות גם באמצע השבוע.

עלותו של שבוע בקייטנה הנערכת בפסח במוזיאון הטבע בירושלים עומדת על 500 שקלים. אולם היכרותן של השתיים עם המשאבים הנדרשים בגידול ילד עם צרכים מיוחדים, ורצונן לשלב ילדים מכל גוני הקשת הובילה אותן לקבל גם ילדים שלהוריהם אין את היכולת הכלכלית לשלם עבור הפעילות. “כל אחד משלם על פי יכולותיו”, קובעת אברהם. “מדובר באוכלוסייה שמתמודדת עם הרבה מעבר לרגיל. זה הפתרון הכי טוב שאנו מצליחות להציע לאוכלוסייה שהפתרון שהרשויות מציגות בפניה הוא ‘תסתדרו’. הילדים שלנו, שאינם מוגדרים ‘במצב קשה’ הם אלו שתמיד נופלים בין הכיסאות, ואנו מעוניינות לסגור את הפער”, היא מסכמת.

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.”

הכתבנ באנגלית.

תקשיבו טוב ביבי, יאיר, שי ונפתלי: אוטיזם הוא לא המוגבלות היחידה שזקוקה לתשומת לב. האם שנת 2013 תהיה השנה שבה ממשלת ישראל תשים בראש מעייניה את צרכיהם של כל מי שנאלצים להתמודד עם מוגבלויות באופן יום־יומי? גברים, נשים וילדים (ובני משפחותיהם) שסובלים ממוגבלויות קוגניטיביות, פיזיות ורגשיות? האם השרים החדשים והמוסדות שהם מייצגים יהיו מוכנים להודות שאוטיזם הוא מוגבלות אחת מתוך רשימה ארוכה של מוגבלויות הזקוקות להתחשבות?

בימינו אוטיזם נהפך לנושא המדובר ביותר בעולם המוגבלויות, תוך דחיקה לשוליים של הצרכים של ילדים עם מוגבלויות התפתחותיות. האי צדק הזה גרם לחלל שרק מתעצם ברשויות מקומיות עמוסות כמו עיריית ירושלים למשל, שאמצעיה לא מאפשרים לה לממן חינוך הולם לאוכלוסייה ההולכת וגדלה של ילדים המאובחנים כסובלים ממגוון של מוגבלויות לימודיות ובעיות התפתחותיות. המסגרות הנדרשות הן בתי ספר, צהרונים וקייטנות במהלך החופשות הארוכות, בעבור ילדים בכל הגילים.

בארץ ובעולם הורים הוכיחו את עצמם כגורם מניע חזק בתחום האוטיזם. הם מחו, דרשו וקיבלו כיתות מיוחדות לילדיהם בתוך בתי ספר רגילים, בנוסף על יום לימודים ארוך יותר ומסגרות מתאימות בזמן החופשות. כיום השירותים הניתנים לאוטיסטים בישראל מקיפים הרבה יותר מהשירותים המוצעים לילדים הלוקים במוגבלויות קוגניטיביות, חינוכיות ורגשיות. זאת ועוד: רוב התוכניות שפותחו לאוטיסטים ממוקמות בתוך מוסדות חינוכיים רגילים, באופן המאפשר לילדים להשתלב עם בני גילם, פריווילגיה שילדים עם מוגבלויות אחרות אינם נהנים ממנה.

מוסדות הרווחה, ובהם המוסד לביטוח לאומי, מעריכים את המוגבלות ומספקים מענקים כספיים בהתאם לקריטריונים שונים. בדרך כלל, ילדים הסובלים מאוטיזם מקבלים את מלוא הסכום האפשרי באופן אוטומטי. לעומתם, חבריהם הסובלים מוגבלויות אחרות, כמו תסמונת דאון למשל, מתקשים פעמים רבות לקבל אפילו חצי מסכום המענק הפוטנציאלי, וילדים עם מוגבלויות שקשה יותר לסווג, לעתים אינם מקבלים מענק כלל, למרות שיבוצם במוסדות מיוחדים ולמרות שהשירותים שהם צורכים מורכבים לא פחות.

ללא גישה לכספי הסיוע הללו הורים נאלצים לממן מכיסם טיפולים וציוד חיוני, ולרוב למשפחות חסרים האמצעים הדרושים לכיסוי ההוצאות הרבות. הערכה מחודשת של הקריטריונים שעל פיהם התקציבים הממשלתיים מחולקים היא הכרחית כדי לאפשר לכולם נגישות לשירותים שהם כה זקוקים להם. ההגדרות הקיימות – אוטיזם, מוגבלות קוגניטיבית ושיקום – יוצרות מחסומים המונעים מאוכלוסיות מסוימות תוכניות חברתיות, חינוכיות ומקצועיות.

שבועיים לפני הבחירות האחרונות, הבטיח ראש הממשלה בנימין נתניהו, שממשלתו תגבש “תוכנית מיוחדת” שמטרתה לטפל באוטיזם. יש עתיד, מפלגתו של יאיר לפיד, התעקשה שמימון הטיפול באוטיסטים יהיה חלק מההסכם הקואליציוני. אין פסול כמובן בהקצאת כספים לטיפול באוטיזם, ההפך הוא הנכון. אבל למה רק אוטיזם? מה בדבר אלפי ישראלים, מבוגרים וילדים, הסובלים ממוגבלויות אחרות? האם צרכיה של אוכלוסייה זו נופלים בחשיבותם? ואיזה מסר חינוכי אנו מעבירים בכך לאותם בעלי מוגבלויות, למשפחותיהם ולחברה כולה, שעדיין זקוקה לעידוד כדי שתשלב אנשים עם מוגבלויות במקום לפחד מהם.

ידוע הדבר שלכמה מנהיגים יש ילדים עם מוגבלויות. אנחנו מעריכים את אלה מהם שבחרו לדבר בפתיחות ובכנות על כך, ומכבדים את מי שהעדיפו להגן על בני משפחתם. עם זאת, הגיע הזמן לפעול. אנחנו דורשים מממנהיגינו שיתייחסו לכל בעלי המוגבלויות באופן שווה. זה הרגע להרים את הדגל, לפעול למען ביטול הסטיגמות והסרת המחסומים, לצד הקצאת מימון הולם לכל בעלי המוגבלויות. נבחרי ציבור נבחרו כדי להוביל הן במישור החקיקתי והן במישור המוסרי, ולא כדי להיאלם דום לנוכח סוגיות קשות כמו הצרכים של בעלי מוגבלויות, והיחס אליהם. הם נבחרו כדי שינקטו עמדה, ישמשו מקור להשראה ויובילו על ידי דוגמה אישית, כי זו הדרך היחידה לחולל שינוי.

שרים, שמשו דוגמה. הראו שאכפת לכם מכל מי שסובלים ממוגבלויות, שאתם סבורים שזכותם לקבל את השירותים המתאימים להם ולחיות בכבוד. הגיע הזמן שמנהיגינו יראו קבל עם ועדה את מחוייבותם לאוכלוסייה, וידאגו לשילובם בחברה, לא מתוך רחמים אלא מתוך אמונה שהם שווים לכל אזרח אחר, וזכותם ליהנות מאותן זכויות יסוד למרות ההבדלים. מנהיגות שתצליח לגייס את כוחה של הממשלה והמגזר הציבורי כדי להבטיח חלוקה הוגנת של אמצעים ושוויון הזדמנויות, תהפוך את מדינת ישראל למקום יותר טוב, ואפילו לאור לעמים.

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.

Thank you Helen Chernikoff for inviting me to post on this great new online forum in the Jewish community. It’s a place to talk about disability issues – with honesty and passion.

I’m an angry mother. I’m also a dedicated mother, and an all-or-nothing mother. Tiger mother? She’s got nothing on me. She’s too busy seeing that her kids become concert violinists, go to Harvard, come up with a cure for cancer and change the world. Pfft – that’s the easy stuff. The road to Carnegie Hall may be paved with hours of tears and practice at her house, but I invite her to join me on the Yellow Brick Road, where each brick is paved with sweat, tears, and wet sheets. Lots of laughter but lots of laundry, too. Me? I’m making sure that my kid is always treated with respect and caring, and kindness, don’t forget kindness, especially when your child requires significant help with simple, everyday activities.

Newsflash. The world doesn’t like disability. The world likes ability and uniformity. Funny how much we relish being the same. Visit any major city these days and note how much the world dresses the same, eats the same junk food and shops in the same chain stores. Walking, talking, going to school, getting a job, doing as you’re told – one nice uniform row of people going in and one nice uniform row of people going out. That’s what we’re asked to do, and what we’re asked to produce when we parent. After all, we can abort those who show themselves already in utero to be of questionable quality and convince ourselves that we’re doing it to prevent them – the unborn fetus – and ourselves, pain and suffering, that it would be too sad or too hard, or too complicated to live our lives otherwise. So why do we raise our eyebrows when we read about hate crimes? Those people were just acting on that basic human impulse buried deep inside us. Blame the world’s woes on someone else and if you can, get rid of them. They’re just dragging us down.

Sounds harsh right? But hey, today, I’m feeling harsh. I’m an angry mom, remember?

It all started with a conversation I had with my son’s afterschool program, which serves about 150 kids and teens with disabilities, many of them significant, everyday, year round.  It’s a great program, run by dedicated, wonderful people, even though I wish it was a bit more inclusive in its methodology. His current group of guys is being closed for logistical reasons. I wasn’t happy to hear of this mid-year change and was upset to hear that instead of offering my son and his buddies a chance to integrate into groups with kids who have better independent living and social skills, they were separating them into two different groups, a sort of motley mix of kids, who don’t seem to fit in with ease anywhere else.

I asked if we could try him out with a group of older and seemingly more capable boys (most of the groups are separated by sex as the program serves a predominately religious clientele). I was told, as I have always been told, that he would be lost in the shuffle, shunted aside socially because of his limited social and verbal skills. I can believe that. But the next day, I was stunned to find out that more than half his new group has mobility issues – meaning they have problems walking and getting around – and at least two are non-verbal.

A bit of background. I co-founded and run Shutaf Inclusion Programs in Jerusalem. We serve close to 120 children and teens, ages 6-21, with and without special needs, year round at our programs; vacation day camps; after school activities; Young Leadership Program for Teens and parent support groups. Shutaf is a place of complete acceptance and inclusion for all kids of all abilities and from all cultural and religious backgrounds. I told the program’s director that I don’t mind a mix of ability and disability. But where’s the other side, those kids who’d help liven up the group by virtue of their language skills and social sophistication? And really, you couldn’t engage me as parent ahead of time, and explain your educational plan and how you structured this group?

And then, I got it. I remembered that even the world of disability doesn’t always know where to place my guy. That’s what it comes down to, of course, even in the world of disability, fitting into the box.

So please, be sure and try not to have a kid with developmental delay, what no one wants to call mental retardation anymore, or worse, one with a dual diagnosis, or one who doesn’t quite fit the descriptions and labels used today. Those are the hard ones, the ones who need that other box to describe their particular needs, like my son.

My guy has always defied his labels – good for you, boyo – so, when he’s found wanting, I’m ready to go out swinging, brought to tears by people’s inability to understand that he can be included, that he deserves to be included, that it’s his right regardless of whether he can tie his shoes, or function at a level deemed acceptable by others. I hate the whole high and low functioning thing, sorry.

When that happens, I have to pull out my dukes and fight back. Because I know who he is, what he is and why he deserves his place in the world. And I say so, because I’m the angry mom.

Beth Steinberg, is the co-founder and Executive director of Shutaf Inclusion Programs in Jerusalem. Shutaf is a place of complete acceptance for all kids; abilities and disabilities; religious and secular, rich and poor, from all cultural backgrounds. FollowBeth on Twitter, and read the Shutaf blog.