On status epilepticus and the status of institutions

With my daughter in hospital

We are currently ensconced in the hospital caring for Chaya, our youngest child.

Twelve days ago, we brought her to her neurologist after a seizure-packed week. By then, she was in true status epilepticus, the apex of epileptic states.

After several minutes in the doctor's office, we were hustled off to the ER where she was subjected to an avalanche of new drugs.

Now, with Chaya showing minimal improvement and barely responsive, we are nearing despair. 

It is telling that we are immersed in caring for Chaya in November – National Family Caregivers Month. Of course, it isn't known as such in Israel but then this is a country that in meaningful ways discourages parents from being caregivers for children with severe disabilities; children who will remain such their entire lives; children who will never be independent, productive adults.

It should surprise no one that we lack a month, or even a week, to salute parents who decide to embrace such children.

In the medical system, my husband and I are often asked "So where does your daughter live?" Our response: "With us at home" is invariably met with a degree of amazement.

That attitude should not be surprising in this institutionalization-friendly state. Generous government funding flows to institutions for each person with disabilities that is deposited there. On the other hand, a mere pittance is allotted to those who opt to care for their offspring with disabilities at home.

This is the way Israel rewards its precious resource of devoted parents. 

I can't think of a more effective means of dissuading parents from keeping their children than that financial policy. In fact, somebody ought to alert Aleh, our largest chain of closed institutions for people with disabilities, that it can hang on to its PR cash. The relentless ad campaign it wages worldwide is superfluous. Institutionalization is a deeply entrenched tradition.

Also coincidentally, the Ruderman Foundation is holding its Summit 2017 this month. Dedicated to the advancement of people with disabilities, the Foundation says the event is intended to:

"bring together 1,000 people from a variety of sectors including: tech, policy, human services, fashion, education, social justice, business, housing, advocacy and more to network and share best practices. Our goal is to inspire, motivate, and arm attendees with the know how to keep up the work of advancing full inclusion of people with disabilities in every aspect of life. These two days will be packed with over 15 panels and plenaries!"

We wonder how the Foundation reconciles this project with the fact that its website contains an article lauding the work of Aleh institutions (archived here in case it disappears). This baffling promotion of institutionalization has appeared there since 2013 and despite our queries about it of Ruderman officials two years ago, it has not been removed.

So what can you do to shake things up? 

Whenever you hear Aleh mentioned, speak up about the evils of institutionalization and the right of every child - regardless of his abilities - to live with his or another family within the community. 

Point out that all those mawkish tales we read of salvation by Aleh are smoke in our eyes. They are disseminated to shield us from the truth about Aleh's operations. 

More about that blinding smoke in an upcoming post...