Tuesday, July 2, 2013

An unexpected turning of the tables

The caption to the Wall Street Journal article photo reads: Just 13 residents remain at Fernald Development Center in Waltham, Mass., the oldest state-run institution in the country for people with developmental disabilities. Photo: M. Scott Brauer
Everywhere else in the world, campaigns are being waged to shut down large institutions for people with disabilities. But 13 Massachusetts families are fighting for the opposite. They want to keep one such facility, Fernald Developmental Center, open. And they've got the best interests of their disabled relatives in mind.

It's a long story that begins with decades of abuse and neglect suffered at Fernald by those thirteen residents along with thousands of others. It includes a hard-won 1993 class action suit that awarded them, as compensation, a guaranteed level of care, regardless of cost.

But the story has a surprise twist: this handful of residents with severe disabilities are the only ones left after their neighbors were all transferred to smaller residences.

And the annual bill for their care is - you'd better be sitting - $10.9 million. That's four times the American average of $220,119 per resident elsewhere.

Read ["At Nation's Oldest Institution for the Disabled, 13 Lives in Limbo", here in the Wall Street Journal] about the superlative care that has been given these residents since 1993. You will then understand why the families are now back in court to block their transfer to smaller facilities. And why they are likely to win.

I was also struck by how truly profoundly affected these adults are - much like our own children.

Note that it is their siblings who are advocating for them. No parents alive. Who will worry about our children after we leave them? Do you ever think that far ahead?

I have always presumed that C.'s life expectancy is limited. This story has me wondering - and worrying - about that.
Michael Martin is 51 years old, but because of brain damage he lives his days like a very young and anxious child, prone to violent outbursts. He is learning to fold towels. Yet his abilities tower over a longtime neighbor, Teresa Kacinski, who can't walk, talk, see, feed herself or change positions. With help, she can strike a key on a toy piano. 
(She reminds me of C.)

Of course the question remains: Can the exorbitant cost to the state be justified?

I'm torn.

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