Wednesday, January 14, 2015

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

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