Wednesday, December 23, 2009

Siblings in Need

Had a fun day filming at Shutaf last week, with friend and fellow parent of a kid with special needs, Michael Liben. Michael and I are friends from childhood and the Malverne Jewish Center, where my father was Rabbi for 25 years before retiring in 1992 and making Aliyah to Israel. Michael went to Brandeis High School while I was at Hillel - we shared the bus as the two schools were across from the street each other although they were much farther apart ideologically but that's another story.

Michael and I were looking for a story and that day we decided to follow the Junior Counselors - local teens, ages 15-19, both with disabilities and without. They were having one of their midday meetings and we shot them chatting, laughing and having fun, a blend of energy and happiness - no teen was left out of the discussion and nobody was marginalized because of disability.

After the teens went off back to their groups, we had a brief chat with one teen, Avigail and the Teen Coordinator, Nomi. At first, the camera made everyone a bit stiff until I asked the question of Avigail, 'why do you come to Shutaf?' She gave a positive response 'I love being with kids with special needs.' But I wanted a bit more and Avigail is the older sister of Atara who was at camp with us during the summer. Atara's issues are not insignificant - developmental and physical - so I wondered that Avigail had no sibling fatigue from dealing with kids with disabilities. I asked her about this. She told me that when she goes with her sister to the park or to shul that often she's hurt by how other kids behave to her. She said, 'I go home and I cry.' She also said that 'Atara doesn't understand' but of course, Avigail does and  hurts for herself and her sister's feelings. 

We talked more about this but I was struck by this feeling that Shutaf works for her because it's a place she can let down her hair and not worry about having her feelings hurt - about feeling any sense of humiliation for her sister, her self or for some perceived lack in her family because of her sister's presence. She can love her sister even more because of Shutaf and maybe she can forgive herself for any of the guilt she carries about this mix of feelings percolating around in her head and heart.

Wow. Maybe that's why I like Shutaf too. 

Sunday, December 13, 2009

A Letter to the Editor

A local friend sent me a link to a recent article in the Jewish Week about the invisibility of being a certain kind of kid with special needs. It was hard not to want to react, both as a parent of a child with special needs and as a professional and exec at Shutaf. Even though my child's issues are more apparent, I understood immediately the frustration and sadness of the parents writing in to the paper. We want acceptance - for our kids and for ourselves. It's time that the great community really consider what that means. I don't know if my letter will make it so here it is for you to read and opine. 

Dear Jewish Week,
November's article 'Invisible Disability' Kids are being Left Out' struck a chord with me. My 12 year old son, Akiva, has a more visible disability - Down Syndrome and PDD - and yet, he is often just as invisible in community life. While he has many adult friends at Kehilat Mayanot in Jerusalem(where we regularly attend), and is welcomed when he arrives, he tends to remain by our side during Shabbat services. He's outgrown the children's service - he's too big to sit with the little ones - and we no longer have the patience to accompany him. Most kids don't know how to relate to him and he lacks the social skills to make appropriate overtures even though he loves contact with other children. 

When we lived in Brooklyn and attended the Kane Street Synagogue, we often wondered how we'd ever find a way to connect him with the other kids of the community. Once a child passes through the cute toddler stage (when all the teenage girls lavish attention), if they can't run with the pack they get left behind. If a kid has more moderate or 'invisible' issues, they suffer even more - they look like the others but can't cope with the typical kids social pace and demands. When we left Brooklyn and moved to Jerusalem, community life became even harder. At least in Brooklyn, everyone knew us and knew Akiva. Here, we were brand new and people weren't used to Akiva's noisy shul presence, consequently, we didn't feel welcome in every shul. 

Inclusion and acceptance are critical areas that need to be developed in every area of Jewish life - as an ethical, social and necessary Jewish value. Parents need to be educated and children taught to watch, care and include - with love and acceptance. 

Looking to answer my own child's needs, I co-founded a new camp and after school program in Jerusalem that teaches these important skills - Shutaf. At Shutaf, we've developed a unique new inclusion model that that teaches these important values in real time. We 'include' the typical kids, who are outnumbered by kids with special needs - all types, all disabilities, visible and invisible. Differences are not such a big deal when everyone is having fun together - when the program is carefully planned and the staff well-trained. By leveling the playing field in such a dramatic fashion at Shutaf, we teach with a gentle hand and make a difference in the lives of all the kids that participate. And our teen program offers opportunities for the older set to feel less marginalized by their differences. They train and work and earn, alongside their typical peers and life looks just a bit more brighter. 

It's not so impossible to create more programs like Shutaf in every community. Youth movement programs could be easily adapted to an inclusion model like Shutaf's. With proper parent support and education, barriers to such programs; fear, lack of awareness and experience, can be reduced and over time even eliminated. 

Parents of kids with special needs have special needs. We need extra attention and effort paid - we tend to feel isolated and alone in our lives, even if we have good friends and seem involved in community life. The toll of caring for our kids takes a huge amount out of us. Making such efforts will go along way to bringing us back from the margins, from the 'invisible' corners of the community. And remember this - the typical kid and teen who has a positive experience now with a child with special needs may be the one who will hire him/her in the future, who will have less fear and more awareness that we're really all created in the image of G-d. Tikkun Olam - something we all need. 
Thank you,
Beth Steinberg
Executive Director and Founder, Shutaf.
Shutaf. Community. Inclusion. Fun.

Thursday, December 03, 2009

Is NPO a Dirty Word? Finding a Model that Works in 2010

Those of us working in the NPO world constantly think about fundraising - how, when, where, etc. Then again, those working the world of profits always think about money - bottom line, where's the next money making idea, profit margins, etc.

But in fundraising circles there is this increasing sense that NPO's have to reconsider how they do business, especially in these economic times. How can one stay current in the world of 'the ask,' where every conversation may lead you to new contacts, where every letter of inquiry might, once and for all, be the one that means real sustainable funding for your program.  Or, how to move beyond the constant scrounge for funding to monies that mean growth, development and success in the years to come for the organization. Can one use a for profit approach that will reduce the fatigue of 'yet another NPO asking for funds.'

But what about the social worth factor? Something that makes a difference to others. Isn't that why you got yourself into this mess? As Dan Pallota, longtime NPO innovator writes, "We got involved because human suffering is not okay with us, and because we wanted to stop it."

Pallota, believes that NPO's should be allowed to do business in a way that would align them much more with profit making businesses, and in his new book, Uncharitable, writes that NPO's should be unleashed to do their good works under a free-market model.

“It is about freeing charities—and all of the good people who work for them—from a set of rules that were designed for another age and another purpose, and that actually undermine their potential and our compassion,” writes Dan Pallotta in Uncharitable (Tufts University, 2008).

As a parent of a child with special needs, I can tell you that I did not intend to start a program that would grow from 10-40 kids in less than a year. But it was hard to stop the ball from rolling once my colleague and I saw the need. Shutaf, the camp program that we founded makes a difference, serving children during long school vacations, August and 1x a week. Did the funding or lack thereof stop us from bringing in teens with special needs as well? Err, no. Our own kids are growing up and we saw the need. More than two years into this venture, we have yet to take a salary or truly pay ourselves back for costs incurred and time given.

Maybe Shutaf isn't yet ready for the kind of business models that Pallotta presents or maybe we should have considered building our infrastructure from the get go the same way a new business would. And yet, when I recall our 2nd camp, back in December 07, we had a budget shortfall. Essentially, we had some donations to make camp possible that combined with parent tuition should have covered everything. It didn't. One salary to one specialist remained unpaid for 6 months, until we had more funds in place by the following summer. Powerful lesson I thought at the time. We will never run a program again if we're not sure that we have the money.  That's a good business lesson, one worth learning but not one that all NPO's follow - at least not here in Israel.

What about partnering with NPO's doing similar work? This makes sense in theory but in practice or reality, doesn't always jive.

At Shutaf, we've been examining this concept from all sides but have discovered that it's not so easy. We spent much of the past summer negotiating with two local organizations in order to run our proposed weekly program for Shutaf kids with them. One organization works within the community and offers much of interest to typically-developing kids. Kids with special needs fit in only if they can manage within traditional inclusion boundaries - that is, they can be part of the program with minimal intervention. Unsurprisingly, many kids with special needs don't take part because they need extra staff or for the program to be adapted to their needs. They want us to bring our kids to them but were unwilling to really offer a space or a way of making it possible. Organization #2 works with a mainly adult population (they started off as kids) and is accustomed to the needs presented by people with special needs, even bigger needs, but they're not sure why they should bother with our method and our population - what's the worth in it for them. After having spend some time trying to convince both of them, we gave up for a while - rather, we retreated to reconsider a better approach in the future.

Financially it could have been a boon for us - shared resources, shared funds and a chance to fundraise and tell individuals and organizations that we serve more children, learn from each others methodologies and ultimately make a bigger and better difference.

We sat down again, rethought our finances, decided that we could manage a bare bones program for a small group of kids and went ahead with our fall program albeit much more simply - 8-10 children, 1x a week and found ourselves a hosting location willing to make it work for us financially. A success? We think so, but that means we're back to square 1 when it comes to finding longterm funds for the program.

I constantly think about other ways that we can generate funding in a more traditional sense. Lots of ideas but none that would work right now. We're running a program in a poor city, serving many marginal families with children who would not attend our programs unless they were as subsidized as we make them. 

How do we move our young organization to a business model that foundations would still fund and private donors would still find acceptable? One that would impress them both with our financial acumen and ways of making it work - especially in this particular market and economic environment. And, how do we, an NPO barely scraping by, get the right kind of advice and mentorship that could mean success and a viable future for our organization so that we can continue with our mission of quality, inclusive informal-education programming for children and teens with special needs?

Here's a great closing story that makes me feel like a real Vermonter, given that at Shutaf we're quite careful with every shekel. Christopher Kimball from Cooks' Illustrated wrote recently (sorry, couldn't find the original)..

I leave you with yet another story from Allen R. Foley, who wrote The Old-Timer Talks Back. It was foliage season and a tourist cruising the back roads felt an immediate need to visit toilet facilities, so he stopped at a farm. The lady of the house directed him to the privy out back. On arriving there, he was embarrassed to find it already occupied by the farmer.
“No bother,” said the farmer. “This is a two-holer, so come on in.”
Later, as the farmer was leaving, a dime fell out of his pants and slipped down the hole. The farmer got out his leather wallet, removed a $5 bill, and tossed it down the hole.
“What in the world did you do that for?” exclaimed the visitor.
“Mister,” said the farmer, “you don’t think, do you, that I would climb down in there for just a dime?”