To quote Diana Ross: I'm still waiting

The Diana Ross song is here

Waiting, waiting and waiting some more. Aside from the US presidential election results, we're doing a heck of a lot of other waiting.

1. While she suffers from daily, debilitating seizures, we're waiting to get that new med, Fycompa (generic name: perampanel), for Haya. The neurologist mistakenly sent us on the 29 Gimel track for authorization. It turns out he isn't familiar with the workings of Israel's health funds so he's not to blame. I've been speaking to both our pediatrician - who must write us the script - and the secretary at the health fund office in order to get this process on the right track. For now, the ball isn't even rolling yet. And authorization remains a dream. 
2. I am also still awaiting a response from the Ministry of Welfare regarding the residents of institutions under its supervision. Specifically, what I want to know is in which institutions the victims of Covid-19 lived when they fell ill. Under the Freedom of Information Act, the public is entitled to that. It even has a name: segmentation. I was only given general numbers by the Ministry back in July. To date, the Ministry has only responded to extend its time limit. I've learned that it is entitled do that three times to reach a maximum of 120 days At that point I can proceed to the government ombudsman.
3. Waiting is ongoing for a response from the Ambassador of the Netherlands to Israel who is scheduled to speak at an Aleh event next week. Why would an ambassador from a country where family care is the accepted policy for its children with disabilities promote the removal of children from families in Israel!? I will share his response as soon as it arrives here.

But at least we're not waiting for magnificent hydro sessions for Haya. This week, due to some malfunction, the pool we rent for her therapy was heated to 34 degrees Celsius. That meant we were able to dispense with her wetsuit, allowing for greater freedom of movement. 

Here she is, relaxed and floating skillfully even without the added buoyancy of the wetsuit.

Good job, Haya!

The pilot project

Apart from the swing, we also await the launch of that pilot project to which Chaya has been accepted, organized by a unit of the JDC. It will enable us to provide her with our choice of paramedical therapies at home.

The funding for those services will follow the person with the disabilities rather than the therapists.

This is the model that we are advocating for all in order to facilitate de-institutionalization and the closure of warehouses like those of Aleh. 

For now, Chaya receives one session of hydrotherapy per week. But it remains the the highlight of her life. 

Here she is floating, kicking and obviously reveling in the hydrotherapy pool this week.