From Keren Malki's Casebook: Yaron

A child-size Gecko Upright Stander: We were delighted
to be able to loan one immediately to Yaron's family

A little extra effort can go a long way...

In general, parents looking for assistive equipment for their child ring directly to the Yad Sarah hotline. Yad Sarah, based in Jerusalem and with many dozens of branches scattered across the country, is one of the largest providers of on-loan personal rehabilitative and mobility equipment in the world. It has been in a very effective and growing Joint Venture with the Malki Foundation since 2003. Here's a link to the launch event.

Sometimes, however, the parents ring us in the Keren Malki Jerusalem office. In general, we try to help the parents directly, even if it is just to take a message and pass on to the Joint Venture warehouse inside the Yad Sarah headquarters building in Jerusalem's Yefe Nof neighbourhood rather than bother them with having to make another phone call.

Yesterday afternoon, we received such a call and I was glad it had come directly to us.

In very broken Hebrew, the father introduced himself as Shlomo. (The names in this story have been changed to protect the privacy of the individuals, but the facts are all accurate and real.) He asked if it would alright to speak in English. Of course, I said. Shlomo explained (in not much better English) that his family has recently made aliyah to Israel. Their son, Yaron, is five years old and has Cerebral Palsy. He has just had surgery on his legs at Assaf HaRofeh Medical Center, a 900-bed Israeli hospital located in Tzrifin, about 15 km south of Tel Aviv.

Yaron, said the father, now has plaster casts keeping his legs straight and apart. On release, the doctors advised getting an active stander for Yaron in order to get him upright for as many hours as possible during the day. Could the Malki Foundation help?

I asked Shlomo to hold while I rang Yisrael at our warehouse. Between us, we decided it would be best if Shlomo could send a photo of what the doctors recommended and then we would try to help. I explained this slowly to Shlomo who then emailed us the photos of what he was shown at the hospital.

Jerusalem: The Malki Foundation/Yad Sarah
Joint Venture is based in the Yad Sarah
headquarters building

First thing this morning, Yisrael checked the warehouse for available stock, and sent back three possible options. A few more phone calls ensued among myself, Shlomo and Yisrael. Then conversations between Shlomo and the doctor, and we came to an agreement as to which of the standers would be best.

To make things easier for Shlomo, he has Yisrael's cellphone number and will meet him at the Yad Sarah warehouse tomorrow morning at 9, where a Gecko stander will be ready for him.

Choosing to move your family to Israel from a western country is never an easy decision. How much more complicated it must be with a child with disabilities. I take my proverbial hat off to Shlomo, Yaron and their family. I am glad that in our way we could help with one problem.

Debbie Fishman
Malki Foundation, Jerusalem

From Keren Malki's Casebook: Yael

The four Israeli health funds are central to the lives of children
with special needs and the families who care for them

Yael, who lives with her family in one of the suburban cities on the Israeli coast south of Tel Aviv, is four and a half. She goes to a Gan Shikumi - in English, a rehabilitative kindergarten. That's the educational framework designed to meet the needs of little children with complicated lives.

The team who man the phones and manage the file-load in the Malki Foundation office in Jerusalem are only too familiar with the kind of experiences Yael's mother and father are going through at this stage in her challenged life - challenged, that is, by a difficult medical prognosis, significant disabilities and uncertain access to a support system.

Yael has Cerebral Palsy like about half the children who benefit from the Malki Foundation's programs. She is also prone to epileptic seizures. The medical report that accompanied her family's application for Keren Malki's support describes a child with a severe developmental delay.

The details of her case are not something we will describe here in detail for obvious reasons of privacy and confidentiality. But what we can highlight is the battle in which her parents are caught up on Yael's behalf. In some ways, it's emblematic of what brings families to the Malki Foundation in the first place.

Like most communities in Israel, the city where Yael lives has its own local Center for the Development of the Child (in Hebrew: Machon LeHitpat'chut Hayeled). Yael is brought there at intervals for assessment and therapies. The most recent status report given to the parents by the paediatric development specialists at the Center (and which forms part of the application to the Malki Foundation) says Yael will benefit from, and therefore needs, more physical therapy than she is getting.

Yes, the little girl gets PT sessions in her kindergarten. The experts' letter says that's not enough. She needs more. So her parents find themselves in an ongoing struggle on multiple fronts to ensure their sweet little child gets the best chance at a happy outcome.

Armed with the referral letter from the Center, the parents turned to their health fund, as they must. All Israelis belong to one of the funds. There are four of them: Clalit, Maccabi, Meuhedet, Leumit and by law, the membership fees come out of the parents' salaries juist as tax payments do. The rules by which the health funds operate are regulated by law and government policy, but they are not identical to one another. From the citizens' standpoint, this can mean a daunting mish-mash of procedures, rules and loopholes to navigate.

Too often, the real power ends up being with a clerk to whom the member turns at the health fund offices. And that's when the 'fun' sometimes begins.

Yael's family found themselves in an impossible situation. On one hand, the experts at the Center for the Development of the Child are prescribing more physical therapy for this child, and now. On the other, the health fund, which has to approve the request and accept the financial charge, says no. That can be a tough argument to overturn. Too often, the unpleasant exchange ends with the clerk saying "No, and that's the final answer". And sometimes, it's "No, and we're not obliged under the law to cover this anyway because your daughter is in a Gan Shikumi".

Here's the rub: that's not what the law says. But a lot of the time, families have no easy way to know that. In our experience (12 years of Keren Malki working with families), it's something that happens too often - as if taking care of a child with serious special needs were not hard enough on its own. Challenging clerks is hard. Changing the law is harder still.

Fortunately, the Malki Foundation steps in when situations like this happen to families admitted to our Therapies in the Home program. We always ask the parents to keep insisting on their rights when the health funds refuse. But while that goes on, we provide support via a structured reimbursement program that lets them ensure their child will get those therapies. It's amazing what a relief it can be for families to discover they have an alternative to a clerk's flat refusal.

We have our rules too, naturally. They exist to ensure our funds are spent wisely and equitably, with the emphasis on empowering the parents. We wish Israel's medical system understood better than it does now that the parents of a child with special needs have a critically important and valuable role to play in achieving better results for children like Yael.

PS Yael's parents receive Malki Foundation support today that ensures she gets considerably more physical and speech therapy sessions than the family's health fund has approved until now. We continue to work with the family to keep the pressure on the health fund to live up to its legal and ethical obligations.

- Arnold Roth