Thursday, April 7, 2016

A new law for others and a new oil for Chaya

Israel's parliament, the Knesset [Image Source]
Every so often, Bizchut ("The Israel Human Rights Center for People with Disabilities") pats itself on the back and shares the news with its supporters. Today, the organization considered itself worthy of a fresh pat. The occasion was passage of a new guardianship law:
We are delighted to announce a historic achievement that will impact on 50,000 people in Israel who have a guardian. Supported decision-making, an alternative to guardian promoted by Bizchut during the past two years, has been included in the new guardianship law just approved by the Knesset.  This change was actively supported by a coalition comprising 18 organizations who worked together on the issue and impacted by a Bizchut-led Facebook campaign that reached over 200,000 people. [From a Bizchut e-mailer I received today]
The Bizchut website explains that on March 29, 2016,
the Knesset voted in favour of the Amendment to the Legal Capacity and Guardianship Law. This amendment constitutes a substantial reform to the law and includes a number of dramatic changes: Recognition of supported decision-making; Recognition of lasting power of attorney; Cancellation of the term ‘ward’; Reduction of cases in which a guardian can be appointed to situastions in which this is necessary in order to prevent harm to a person when no less restrictive option is available; Cancellation of the option of appointing a general guardian without detailing the issues under his or her authority; Defining the individual’s wishes as a guiding element in the guardian’s considerations; Defining the rights of persons under guardianship such as the right to receive information from his or her guardian and the right to independence and privacy; Defining the right to legal aid representation in cases of involuntary hospitalization; Limiting the ability of a guardian to force a decision relating to fundamental issues; The new law constitutes a rare opportunity for recognizing the right of every person to legal capacity and to make the decisions that affect their lives...
This is indeed welcome and important news. But it won't affect the thousands of severely and profoundly impaired individuals including my Chaya. For her, full guardianship isn't even at the bottom of her list of worries because she couldn't survive for a moment without it.

While involved in campaigns like the one described above, Bizchut has been neglecting the needs of those like my daughter for whom this law is utterly irrelevant.

Specifically, it has neglected its past, forgotten mission to push for de-institutionalization and a redirection of funding to families caring for their children at home.

As the recent selection of recipients of the 2016 Israel Prize for Lifetime Achievement makes abundantly clear [see my earlier post, "In love with institutions"], this segment of the population with disabilities isn't on anybody's radar in Israel. In the eyes of mainstream NGO's and our government, the solution to their problems is simple: institutions, and the larger the better.

On a happier note, a lengthy CNN segment profiled our largest grower and distributor of medicinal cannabis, Tikun Olam, Another video report ["Video: Israeli boy finds relief through medical marijuana", April 2, 2016 - here] profiled a Haifa couple who - as we do - purchase CBD oil for their son who suffers from intractable epilepsy and severe CP. The couple noted that it supplements the CBD, which their son receives several times/day, with THC oil which it administers only on "bad days.".

Our THC bottle from Tikun Olam
I have been toying with the idea of trying THC but presumed that getting the stuff would involve a daunting string of phone calls and paperwork. But that video piece prompted me to  take the plunge.. I was blown away to learn from Tikun Olam's nurse that all we needed was a doctor's written authorization - and a pediatrician would suffice!.

Now, just three days after watching the video clip online, we are the proud possessors of this bottle of THC.

Today, while Chaya is actually having a "bad day", i.e. having lots of seizures, they are accompanied by her "central fever". This is an inexplicable neurological symptom which occasionally appears on the scene through no fault of any of us. When it does, Advil does the trick. Once the fever is lowered, the seizures taper off.

So I'm saving the THC for a "no-fever-bad-day". And, of course, you, readers, will be the first to hear how Chaya responds to it.

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