|As this piece appeared on kerenmalki.org|
Saturday, November 4, 2017
For caring parents, no choice but to fight the system
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.
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“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.