Friday, June 24, 2016


Chaya's end of year celebration
We "celebrated" Chaya's graduation from her last year of school. Ever. (See snapshot on the right.) Our state now throws her to the wolves.

We have the choice of kicking her out of her home and plonking her in an institution - Aleh is the one that every professional we've encountered mentions as an option.

Otherwise, she is eligible to attend one of three "day centers" in Jerusalem. My husband visited two of them (the best of the three) and we can't consider those realistic options. People with profound disabilities are provided  nothing beyond very basic care by a staff of 2:10 students. Any therapies that will be offered - and some do not offer any - will be fewer than at her current school where they are 30 minutes per week per therapy. The math is disheartening.

Care to join our fight?
The Kupah (medical insurance fund) we're in offers Chaya 7-12 sessions of physiotherapy. That's per YEAR. Oh, and we forfeit that "gift" if we enroll her in one of the day centers.

Undoubtedly a grim picture. We are keen to petition the High Court for provision of the same services at home as Chaya would receive were she institutionalized. Bizchut assured me that if I could locate another four families to join our petition they would consider shouldering the cost of such an initiative.

Is there is anybody among you, readers, who has a child over the age of 21 with severe disabilities living at home? If so, do you feel entitled to therapies and care -assistance from the government? If you are up for the fight, please contact me.

And on a more upbeat note, my son forwarded this moving Washington Post photo essay of adults with developmental delays who are involved in romantic relationships.

Several years ago I wrote two articles about a Jerusalem couple with Down Syndrome who married, one before the wedding and the second, two years into their marriage. They're here and here. (Note: I used pseudonyms in the pre-marriage article.)

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