Where's the progress for the profoundly disabled?

Well, it's been a while so I'll update regarding that protest demo I publicized here ["For Israelis with disabilities, two divergent paths"] a couple of weeks ago.

To put it bluntly: a disappointment. 

Meager turnout and infuriating response from the Ministry of Welfare, the building outside of which we protesters stood. A number of people with disabilities participated and expressed their anger. 

The mother of Effie Ben Baruch, the young man who recently died from physical abuse by his caregivers, was there. I approached her asking how she was connected to Effie - I had a hunch she was his mother from her grieving demeanor:

When we first approached the building's entrance gates, a guard asked the man in the wheelchair leading us: "Who is your representative?"

The wheelchair-bound man was duly infuriated: "We represent ourselves!" he responded.

After the protesters were refused entry, they demanded that the director of the Ministry's department for disabilities come down to speak to us. He did not deign to do that.

Instead, some other employee from an unrelated department eventually emerged from the "fortress" and promised that the director will be visiting Effie's bereaved family soon.

Hmmm. I call that a slap in the face.

As I overheard one protester in a wheelchair telling his friend: "This protest takes me back 30 years!"

Precisely. The baby steps of progress for the severely disabled actually feel more like deterioration in comparison with every other area of social welfare.

That impression has been reinforced since joining the Facebook page "Special Needs Mama's in Israel". I hoped to find camaraderie, a common cause, etc. Instead, I sense that parents of children with profound disabilities aren't even on that page's - or society's - radar. We're invisible. The gripes and venting posted on the page make me feel so isolated. 

I fairly pray for the sorts of problems that those parents bemoan. For instance, one mother related how her daughter sat on the curb and cried after waiting three hours for a bus to go to a movie with friend. Several buses had passed her by. As one commenter noted: "I'd have cried too!"

At my husband's urging, I'm considering starting a Facebook page for parents in my boat.

Any of you caring at home for children with serious disabilities, physical/cognitive, and craving such a forum please comment here. If you prefer privacy, I can provide my email address at your request.

BTW, once again, and unfortunately, that protest only received coverage in the Hebrew language media, so I will translate the following piece asap. 

For now, I've done the headline and the intro:

"I am not prepared to be stashed away in an institution": Will the resident who died from abuse advance the closure of institutions for people with disabilities"
The death of Ephraim Ben Baruch in an institution highlighted that the era of institutions for people with disabilities, mostly in private and barely supervised hands - has ended. But the transition to in-community living is happening at a slow pace, thousands live in danger, and the State continues to violate the law. This week families protested against additional neglect from outgoing Minister of Welfare Chaim Katz.

More to come.