Sunday, April 16, 2017

Respite care at Aleh: A mirage?

Respite care for disabled boy [Stock Image]
We parents caring for a child with severe disabilities all suffer from exhaustion and burn out sooner or later. A break from the grueling routine can not only energize us; it can literally rescue us.

Unfortunately, though, that salvation can be elusive. So it was with keen interest that I read the following in a post on Aleh's homepage.
As we toured ALEH, we all noticed the great love and care offered by the staff and volunteers. ALEH provides these special children with a quality of life that would not be possible otherwise, ensuring that their parents receive the support they so desperately need and a break from the 24/7 attention require to care for them appropriately. [Source: Aleh]
This was news to me. I had never heard or read that Aleh offers respite care. All their PR blather about Aleh being a "family" and a "home" appeared to indicate that Aleh only offered one residential option - for life.

But a dear friend of mine who also has a daughter with special-needs requiring round the clock care had been trying to locate a setting offering short term care to enable her and her husband to take a desperately needed vacation. So I told her about Aleh's apparent respite care program and she wrote them the following:
Dear Aleh,
I am the mother of a child with profound disabilities and a chronic illness. I have been caring for her at home for many years.(she's now 22).
I learned from your website that Aleh offers respite for caregivers like me.
What is the time range during which I can leave my child temporarily in your care?
Mrs S [Surname omitted]
My friend received this response soon afterwards:
Dear [S],
Hi! I am so sorry for the delayed response.
Your email went into my junk mail by mistake.
I do not have an answer for you.
I suggest you call the Jerusalem office directly and see if they can help you 02.501.1000

Dov Hirth
Marketing & Development
Office: +972-2-501-1116
USA: 1-866-717-0252
Canada: 888-824-5477
England: 0808-234-3782
ALEH provides over 700 children and young adults with severe disabilities in Israel with high-level medical and rehabilitative care in four residential facilities. ALEH is their home and their family – 24 hours a day, 365 days a year.
This struck us as odd since Mr. Hirth appeared to be in a perfect position to answer my friend's straightforward query. She wrote him again.
Hello Mr. Hirth,
What I am interested to know is whether Aleh can care for my child for a few days to give me and my husband some respite. If that is a service that your facility offers I will definitely phone the Jerusalem office as you suggested.
Thank you.
My friend's second email never received a response.

Clearly, Aleh implies that it offers respite care but does no such thing. And this should surprise nobody. No doubt they figure: why would we offer that service to aid and abet parents who reject institutionalization and keep their children at home? That would be at cross purposes with Aleh's goal.

But mentioning respite care on their website sure enhances Aleh's image.

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