Thursday, November 27, 2014

Close the institutions - but vet the families!

My blood is still boiling after learning about Lumos’ strides toward global de-institutionalization while in this corner of the world institutions flourish. My country is on the cutting-edge of every other field. So why, when it comes to caring for our severely disabled, is it entrenched in the Middle Ages. And, even more baffling, why are local professed activists for disability rights so blasé about it.

About a year ago, the administrators of the preeminent organization  in this arena boasted to me about a meeting they'd had with our minister of welfare. They said they had elicited  from him a commitment to halt the expansion of our institutions. They considered that a major achievement!

I’m working on a piece about this which I hope to finish and publish locally by December 3 – International Day of Persons With Disabilities

Speaking of Lumos, I mentioned that this organization promises to follow and support all the families to whom residents of institutions are transferred. But I glossed over what an enormous undertaking that would be.  It would, I imagine, demand the input of huge cadres of professionals such as social workers and psychologist to select and supervise those families. Because far too many children with disabilities are victims of unspeakable abuse at the hands of either biological, adoptive or foster parents. I wonder how Lumos is tackling the enormous challenge.

This article, once again from the Neediest Cases files of the New York Times, highlights the risks.

Dejulaira Lopez, 21, born with spastic quadriplegia and confined to a wheelchair
is the young woman in the New York Times article
Ms. Lopez, 21, was born with spastic quadriplegia, and is confined to a wheelchair.“Not only was I a kid in foster care, I was a disabled child in foster care,” she said… By Ms. Lopez’s side at each home was her brother Ruben Camcela, 23, who has autism and epilepsy...“I felt it was my obligation to look after him because he didn’t have anybody,” she said. “I didn’t really care what happened to me.Ms. Lopez said her first foster home was brimming with love, but the house was not kept clean. After seven years the agency placed the children with a different caregiver. It was there, when Ms. Lopez was 9, that the abuse began, she said. It would continue off and on for a decade in five more homes. “My brother was kind of my rock through all these years,” she said. “Even though he couldn’t talk, he did so much for me. Every time I looked at him, he just pushed me to keep going.” ["After Years With Caregivers, Cherishing Her Independence", New York Times, November 22, 2014]
Fortunately, thanks to a dedicated non-profit organization, this story has a happy ending. But undoubtedly many more such children still languish in abusive foster homes. There’s clearly a crying need for a better approach.

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