Wednesday, April 8, 2015

A by-pass road to avoid confrontation, empower families, help the children

Screen shot from tomorrow's Jerusalem Post Magazine
Click here for a PDF of the two-page article as printed
In Thursday's Jerusalem Post Magazine (April 9, 2015), there's going to be an article in the paper's occasional Wine Therapy section under the heading "A meaningful life". It's an interview with Malki Foundation co-founder, Arnold Roth, that examines the factors that led to the organization's chosen direction and its approach to the population it seeks to serve. (And for those wondering what this has to do with wine or restaurants, we're with you.)

Thursday being the eve of the last festival days of Passover, the story went up online today, Wednesday (but it's behind the paywall) here

Click here for a PDF of the article as printed.

Following is a modified text version of the online article.

Wine Therapy: A meaningful life | YOAV SCHWARTZ, ASAF FINKELSTEIN | Jerusalem Post | April 8, 2015

Goal: To discover the personal story behind the Malki Foundation
Means: A meal at Station 9 restaurant in Jerusalem and Emek Bracha wine from Gush Etzion Winery

It’s 2001: the Second Intifada. Terrorism is rampant, striking at Israelis across the country. Jerusalem is firmly in the sights of the terrorists who carry out atrocities that remain etched in Israeli consciousness. One was the human-bomb attack on central Jerusalem’s Sbarro pizzeria.

Minutes before the explosion, Malki Roth, 15, and her best friend Michal Raziel, enter and place their lunch order at the counter. The powerful bomb and the terrorists’ determination to kill as many Jews as possible gave them no chance.  It cut short Malki’s young life and horrified an entire nation.

While the attack was celebrated with dancing in Arab villages, Malki’s family being creating a foundation in her name. Their goal: to provide support for children with special needs and their families on a non-sectarian basis.

Thirteen years later, we sat with Malki’s father, Arnold Roth, to learn more about the foundation whose work positively impacts thousands of families.

Interviewer: Tell us about Malki. What sort of girl was she?

Arnold Roth: Malki was born in Melbourne, Australia. She was two when we made aliya. It’s human nature to speak of the departed as being wonderful. But whoever knew Malki was aware of her beautiful, constant smile. She was always doing something constructive for others. This was especially clear in how she cared for her youngest sister, Haya, who is nearly 20 now and profoundly affected by disabilities. Malki was just 11 when her little sister’s tremendous challenges emerged.

Were they close?

Yes though the relationship was not symmetrical. Haya’s disabilities meant she gave no visible response to the deep love and affection that Malki showed her. Malki had a rare sensitivity to other people that was rich in insight and empathy – something rare in a person so young. By the summer of 2001, when she and a friend volunteered at the Etgarim camp for children with cognitive disabilities, Malki had acquired a substantial resume of volunteer work with special-needs children. Malki’s compassion and zest for life were exemplary and moving. That’s the legacy she bequeathed to us.

When did you decide to establish the Malki Foundation?

That was during the seven days of mourning – the Shiva. As a family, we wanted to ensure Malki’s beautiful life would not be forgotten  - that it would not become a mere statistic. As the family of a child with profound disabilities, we knew how hard that can be. We decided to create a small, very focused organization, that would help other families achieve more and get disheartened less.  We filed the formation papers right after the Shiva, and received the certificate of Keren Malki’s establishment on September 11, 2001. That was the same day that we held an Azkara, marking 30 days after the murders of the two neighbourhood girls, Malki and Michal. That date, of course, is now better known as 9/11.

Why choose to support families of special needs children?

My wife and I had been pushing back for some years against some very disappointing aspects of Israel’s health-care system. It seemed the very last thing the insurance companies and government ministries cared about was our youngest daughter’s future. Malki’s murder brought about a subtle change in our approach. We realized the system would never change as fast as we wanted. Fighting it would take energy we no longer had. Instead, we started building a detour – a by-pass road – to allow families like ours to avoid confrontations but still get what they and their special-needs child need.

It takes courage to try and replace the state in this role

We make very sure that Keren Malki’s work augments, and never duplicates or replaces, what government ministries and the health funds do. Despite its tremendous achievements, Israel does not yet do tremendous things for its children with special needs. It does much less than it could and should. Things will get better.

How do you bring about change?

When we were first told by so-called experts that it would be best for our year-old daughter and us to hand our child off to institutional care, we knew something was wrong with a system that devalued the parents’ role. In creating the Malki Foundation, we saw two key things that would empower the family and allow them to keep the child at home as long as possible.

One: provide them with essential home-care equipment like special chairs and walkers. We asked the Yad Sarah Organization to partner with us in this. It has worked wonderfully well.

The second: Enable easier access to the paramedical treatments that are essential for a child’s development.  We passed the 40,000 therapy sessions mark a while ago. Every one of those sessions could not have happened if it were up to the health funds or the government alone. The families who benefit can tell you about the positive impact those therapy sessions are having.

And your personal role?

We felt this new charity should not become our parnassah, a source of income for us. We had seen too many worthy causes that turned into family businesses and wanted to avoid the conflicts that inevitably follow. Frimet and I are volunteer advisers and board members at Keren Malki. The real work gets done by dedicated staff professionals.

How does it work in practice?

In our Therapies at Home program, the family decides which non-medical therapies, how many, when and selects the therapists. Families who are sometimes infantilized by their dealings with officials are empowered by the support of the Malki Foundation. And empowerment, as we have learned, is a key ingredient in getting great results.

We have a second therapies program that’s specifically for families in the northern and southern periphery of this long, narrow country. Too often, we could give them a blank cheque but they could not spend it. They live too far from where the therapists are. So we have done what we wish the government would do: send physical, occupational and speech therapists into their homes under expert supervision. The inspiration and seed funding for the Zlata Hersch Memorial Therapists on Wheels Program came from a remarkable Jerusalem family who have asked that their names remain private.

Here’s an example. A severely disabled boy of seventeen was released from long-term hospital care to his home in a Negev community. Back in Jerusalem for his annual clinical review, the parents were asked why there seemed to be little progress. Answer: there were no accessible therapists in their vicinity and driving their son to far-away treatments was overwhelming. It’s just one instance, but even telling it makes my blood boil. A totally avoidable problem.

How so? Their town is in the remote periphery.

Ours is not a banana republic with third-world expectations. This is Israel where the values are proudly Jewish and the expectations are state-of-the-art. In the case of that young man, the Malki Foundation, with our limited donor-funded resources, intervened. The outcome is as you might expect, heart-warming and positive.

We all know the government and the “system” ought to be thinking the way we do. Perhaps one day it will.

You sound critical…

Both as a parent and as someone passionate about the foundation, I am certain that things can and must get much better. Empowering parents does not happen enough. Parents are among the child’s main advocates and agents of change. Ignoring them and their contribution happens more than the authorities seem to realize. It’s a self-defeating mistake.

Why did you choose to support these families specifically through therapy?

After more than a decade of activity, we know how often a parent’s request for support is answered with a bureaucrat’s “no”.  It’s deeply satisfying to me whenever Keren Malki steps in to say “yes”.

The Malki Foundation seems unlike some other organizations in the non-profit sector in that you don’t leverage your success for fund-raising and you don’t use personal stories very much. Whoever is familiar with the world of Israeli non-profits knows this is a rather unusual way of operating.

My wife and I, as parents of a special needs child, often feel condescended to by the system. We are determined that the families helped by the Malki Foundation’s work don’t get that treatment from us. We keep a respectful distance and respect their privacy. But human nature being what it is, sometimes families who have gotten support push hard for the right to help us tell our story.

Can you share an instance?

There’s one family who have endeared themselves to us in special ways. Triplets were born. Two were fine; one had severe challenges, beyond words. The mother, a fantastic advocate for her own family, today talks about how the doctors said she should abandon the special child and focus on the others. I believe the word ‘vegetable’ was used. She and her husband chose to ignore the ‘advice’.  The tiny child with huge challenges came home after his siblings, and the family embarked on a mission to give every kind of non-medical treatment that could enable him to achieve his potential. This, not surprisingly, brought them to the brink of insolvency and the pressures that come with that.

What was the outcome?

The Malki Foundation got involved via our Therapies at Home program. Fast forward: that little boy is now a beautiful, energetic young fellow who does pretty much what other children of his age do. His parents are an absolute inspiration, but the system let them down. Had matters run their course and the family accepted it, the outcome might have been much less happy.

It’s incredible that Ahlam Tamimi, the terrorist who masterminded the Sbarro pizzeria killings and bought the human bomb to the center of Jerusalem, was freed from prison in the Shalit exchange and has become a celebrity in Jordan while she continues even now advocating for the murder of more Israelis.

Many hundreds of Arab families have benefitted from the services of the Malki Foundation. There is no political aspect to its work, which is the way most Israeli institutions operate even if people far from here believe the opposite. The foundation operates on a strictly non-sectarian, politics-free basis.

When I think of the hatred that motivates Malki’s murderers up until today, and then of the constructive things done in her memory, I no longer pay attention to such journalistic clichés as “two sides of the coin”. For me, our side is symbolized by a fifteen year-old girl who, if she had been spared to live a full life, would probably laugh off the silliness of politicians and look around for more good, helpful things to do.

Final word?

Malki wrote a song. It’s on the foundation’s website. I often speak to schools when I travel. Almost every time, a student or two will come up afterwards and tell me my daughter’s music is on their smartphone or portable device. Knowing that Malki’s music is out there, spreading optimism, is satisfying beyond words.

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