Saturday, November 4, 2017

For caring parents, no choice but to fight the system

As this piece appeared on kerenmalki.org
While we never intentionally give away the identities of the families who benefit from the Malki Foundation programs, or of course their children, we do want to share with the public - and especially with our supporters - some of the drama, the sweet moments, the challenges and the daily realities of the lives they live.

The profile below was posted last week to the "Meet the kids" section of the Malki Foundation website

The child's real name is not Shai, and his mother is not called Chaya. That's not him in the photo. But all the facts here are true.

* * *

“It’s not enough to have a disabled child. You are left with no alternative but to fight the system.”

These are the words of Chaya, whose 12 year-old son, Shai, has Cerebral Palsy.  Shai has a specific form of CP called spastic diplopia which causes his leg muscles to stiffen and contract, and relegates him to a wheel chair, unable to walk.  Several months ago, Shai underwent expensive surgery to help release the leg muscles enough to allow him to walk on his own. The surgery went well and the doctor sent him home with instructions to undergo therapy at least 4 to 5 times a week until he is able to walk on his own.  The frequent therapy is essential to stretch and strengthen his legs.  Without it, not only will he not be able to walk but his legs will weaken even more. That means the surgery will have been for naught.

Despite letters and requests from the surgeon and the neurologist treating Shai, his health fund (Kupat Holim) granted him only a single therapy session per week. It wasn’t until Chaya complained to the Ministry of Health that Shai’s intensive therapy schedule was approved, but then only for three months. 

Once the three months ended, Chaya had to put in a new request to for medical insurance coverage and then repeat that at intervals. And then wait - and wait for the approval request to be processed and approved for another one or two months of therapy at a time.  Each such request inevitably comes with a processing delay. The result: Shai does not get the therapy he needs while they are left waiting for an answer. 

Sometimes the response from the anonymous system is that Shai “doesn’t need any more therapy”. Chaya then threatens to take the matter to the Ministry of Health and that’s when the Kupah grudgingly agrees to a month or two more of therapy. The process then repeats itself.

There’s an additional disheartening aspect to Shai’s story: as he grows older, the system gets more tight-fisted. 

Chaya recalls that when he was little, Shai received therapy in his pre-school at the rate of 4-5 times per week, without any argument.  But as he has gotten older, the faceless clerks have cut his therapy entitlement by half and then by another quarter. No doctor’s decision has been involved; it’s done entirely within the medical fund. 

Chaya feels she must fight because as Shai grows, he needs frequent therapy sessions even more than when he was younger.  How, she wonders, do they not see that helping her son become more independent means he will need less support from government funding in the future.

Determined to maximize the likelihood that Shai will eventually walk unaided, Chaya turned to the Malki Foundation. She told us how deeply worried she is that the kupah people might decide at some point to discontinue their support of the therapies that can help Shai walk on his own. 

In cases like Shai’s, the Malki Foundation pays for 85% of the cost of the therapies, a contribution that makes a real difference to their ability to arrange them and that over time can dramatically empower the family. 

Our hearts are with Shai and his family in their struggle. No one will ever be able to do for Shai what they do. We are proud to have the privilege to stand with them and watch as our support contributes to them achieving their dream.  

Tuesday, September 26, 2017

As we draw near to the Day of Atonement

2017 annual report
To read the online version of our annual report,
click on the image a few paragraphs below this photo
The High Holydays period in Jewish tradition reaches its dramatic high point on Yom Kippur, starting this Friday evening.

We're accustomed to think of it as a time for fasting. But in our people's sacred texts it's called a time to practice self-denial, something we rarely do at other times. 

Thoughtful commentators have helped us understand that we take on the not-eating, the not-drinking, the other self-imposed hardships of this very special day for practical reasons: to help us enter into a self-searching frame of mind and to achieve personal dialogue with the Master of the Universe.

Looking honestly within ourselves is never easy. It involves thinking not only about actions but about ethics and spiritual ideas: Am I living up to my own values? Am I the person I wanted to be? Is the world, is my community, is my family better because of me?

The Malki Foundation's work is intended to change people's lives for the better. With all due modesty, we feel that we do that - though not enough, of course

If you are reading this letter, you probably know already that we devote our energies and resources to providing concrete, measurable help to people who get far too little of it: families caring at home for a child with serious disabilities. No other organization in Israel does the things we do.

During these Ten Days of Penitence, when acts of charity are especially respected, please consider making a donation to the Malki Foundation.  You will be assisting families grappling with some of life's major challenges. Secure, online donations can be made by clicking here.

This is also the time of year we send out our annual print newsletter. If you have not yet received your copy, click below to read it now - online.


There's one brand-new development that does not appear there:  The Malki Foundation Australia Ltd is now endorsed as a Deductible Gift Recipient (DGR) from September 1, 2017. That's great news. Details to follow.

With sincere wishes for a better new year for all, and warm thanks to all of you who have made such a positive difference by your contributions to the indispensable work of the Malki Foundation.

Gmar Hatima Tova
The Team at the Malki Foundation
Jerusalem

Sunday, August 27, 2017

Fast approaching: Our second annual Ra'anana concert

The audience loved last year's Ra'anana concert
It's that time of year again.

The Malki Foundation invites everyone to an enchanting evening of Hassidic, Israeli, jazz and popular songs benefiting our unique and life-changing programs for children with special needs.

The Ra’anana edition of our acclaimed annual Rainbow of Music concert will showcase the delightful talents of Daniel Zamir and Shlomo Katz together with the Ramatayim Men's Choir Jerusalem directed by Richard Shavei-Tzion.

Tuesday evening - September 12, 2017
The Mishkan, Municipal Arts and Music Hall, Ra'anana (north of Tel Aviv)

Order tickets at https://www.rainbowofmusic.org/tickets

This being our most important fund-raiser of the year, please consider purchasing extra raffle tickets while putting through your order.

Enjoy an entertaining night out and help contribute to a great cause at the same time. What could be better than that?

Wednesday, July 26, 2017

Another Twelve Tribes success!

It's good to be able to report on another successful Australian Friends of Keren Malki Twelve Tribes Kiddush - the third year running - this past weekend in Caulfield Synagogue Hall, Melbourne, Australia.

A crowd of more than two hundred packed the venue - people of all ages and from a variety of denominations, coming together to share good food and fine beverages with friends - all while supporting families of children with disabilities in Israel. 

Attendees at the well-run and lively event were treated to twelve gourmet herring-based dishes, all kosher and each one paired with a different kind of whisky. Who knew there were so many possibilities?! 

Debbie Fishman, who is normally based in Jerusalem where she directs the Malki Foundation's global operations, was present (in the course of a family visit to Melbourne) and addressed the crowd. She spoke of how the Malki Foundation works to fill a great gap in the services available in Israel to children with disabilities and to the families who care for them. She emphasized the importance of the Australian community's support in helping the Malki Foundation achieve its mission. Debbie gave thanks for the hard work of the organizing team whose voluntary efforts along with some hard work and the support of the many sponsors enabled the event to happen again, and again to be a success of which we are all proud.

The special appreciation of the Malki Foundation is extended to Ron and Sarah Tatarka of Scott Winton Insurance Brokers who were this year's Twelve Tribes Patrons. 

Also to booklet designer Doodie Bankier and printer Charles Leski whose great work provided the means to express gratitude in physical form to the sponsors and supporters. 

Last but not least, our extremely gratitude to the dedicated and hard-working committee members (alphabetically): Leon Burman, Chaim Gelber, Helen Gelber, Ralph Greenberger and Jacob Weinmann

Thank you to everyone – attendees and organizers alike – for coming together in true Twelve Tribes fashion to give children with disabilities in Israel the chance to receive the care they deserve.

And for the curious, a list of the delectables:

Herring
Whisky
Schmaltz
Ballantines 17 year old
Sriracha
Glengoyne 9 year old by Provenance
Wasabi
Bowmore Small Batch Bourbon Cask
Chili and Garlic
Glenlivet Nadurra 16 year old
Tomato and Basil
Laddie Classic
Roasted Capsicum
Glenmorangie The Original
Chimichurri
Glenfiddich 14 year old Rich Oak
Fennel and Mustard Seed
BenRiach 10 year old
Sweet & Sour
Deanston 12 year old
Mediterranean Olive
The Balvenie 14 year old Caribbean Cask
Salmon Gravlax
Jura 10 year old

Monday, July 17, 2017

Calling all Twelve Tribes: If you're in Melbourne this weekend...

For the third year running, the Australian Friends of the Malki Foundation are having a memorable public gathering under the meaningful title "Twelve Tribes Kiddush". All the details are in the poster below.

The key things to know:
  • To take part in what have been popular and successful events in 2016 and 2015, you need to book and pay in advance. 
  • Venue: Caulfield Hebrew Congregation, 572 Inkerman Road Caulfield
  • Bookings at Trybooking,com
  • The cost is modest and great value for the very fine fare being provided but in any event...
  • All the proceeds go to support the really fine work done in Israel with families from all parts of Israel's multi-hued spectrum who care for a child with extreme special-needs.
Click to enlarge the poster
Look forward to seeing you and all the Twelve Tribes!

And for some background, some notes on the previous years' Twelve Tribes Kiddush:

Sunday, July 16, 2017

A Tel Aviv gathering helps us get out the word

Partial view of attendees and the snacks
In Tel Aviv earlier this month, a Malki Foundation event in a professional office with one of the Big Orange's most spectacular views provided a great opportunity to share an intimate update on the work we do to benefit Israeli families and their children with special needs.

The Asserson Law Offices in Tel Aviv's Azrieli Center provided the setting for a fascinating gathering with His Excellency, Ambassador Daniel Taub, until recently Israel's chief diplomatic representative in the United Kingdom.

Though the breathtaking late afternoon vista, looking out onto Tel Aviv's high rise skyline and the glittering Mediterranean just beyond it, was a major distraction, Mr Taub's talk kept the invitation-only crowd entranced.

A gifted and charming presenter, Mr Taub did real justice to the intriguing subject line: "Behind the Scenes at the Court of St James: An Outsider's Inside View".

He spoke of how representing Israel at the highest levels of British society, politics and public life provided him with unique opportunities and challenges. He shared some of the ways in which he was able to put emphasis on cross-cultural and interfaith aspects, including teaching Bible and Hebrew study classes in Westminster Abbey and at the Church of England Synod and jointly hosting a Hanukah party with Greece's ambassador to London!

The difficulties and the delicacies of being under great scrutiny as Israel’s representative to the UK made for a captivating talk.

His very well-received presentation was followed by some brief words from Arnold Roth, The Malki Foundation’s co-founder and Honorary Chair, who shared some of the experience of being a parent of a child with severe disabilities and the ways in which Israeli society rises - and often fails to rise - to the challenge. He surveyed some of the ways in which the limitations and shortcomings of health and welfare systems in providing support for children with disabilities can be the source of significant hurdles for such families in every part of Israeli society.

The Malki Foundation plays an increasingly valuable role in helping to address those challenges. Arnold highlighted the way our work has recently been helped via a significant grant from an Israeli government office - the first of more to come, we hope.

Jennifer Shaw Racz of the Malki Foundation's Development Desk
responds to the ambassador's speech.
He also spoke about Malki Chana z”l, his daughter whom he referred to as a special soul who brought light and kindness to the world. The Malki Foundation carries out its important work as a living memorial to Malki's life.

This is a good opportunity to express a public "thank you" for their invaluable contribution to Ambassador Daniel Taub whose presence - despite a forbiddingly busy schedule - graced the event; to Trevor Asserson, Lisa Green, and Nicola Field for their hospitality at Asserson Law; and to the new and veteran Malki Foundation supporters who attended as members of the audience.

To find out about upcoming events at the Malki Foundation, please email us [office (a) kerenmalki.org] so we can add you to our list.