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the guardian - Health Opinion
March 24, 2016
By Belinda Barnet

The deaf community doesn’t see deafness as pathology in need of a cure which, as an Australian mother writes, creates a terrible conflict for parents wanting to ‘fix’ a child

Laura’s first word wasn’t “mama” or “dada” – it was “up”. I couldn’t believe my ear at first (I’m profoundly deaf on one side). Our baby, implanted with cochlear implants at 11 months old, was now talking. That first word came at 15 months. I’d spent the last 14 months crouched on the carpet trying to coax any sound at all to issue from her lips.

Like a spectre of the future, this first word predicted her language trajectory over the next year: her vocabulary exploded to over 400 words by the age of two. She is now three, blue-eyed, blonde-haired, with an annoying tendency to sing Disney songs when I’m on the freeway. Her language is “in normal range” – this means she speaks as any other hearing three year old might speak.

It also means I can stop and reflect on what just happened. I don’t think I breathed for the first two years of her life; it was a blur of medical appointments, bad news, waiting rooms, “auditory brainstem response” caps larded with electrodes, and more bad news.

Then there is the conflict that ate away at me for months: was this cherubic little person “disabled”? If so, I felt an overwhelming compulsion to “fix” her.

Read more . . . 'disabled'?



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Miami Herald
Feb 4, 2015

Six months after Florida rolled out its Medicaid managed care program – transitioning almost 3 million Floridians into private insurers — some recipients with disabilities say the new model hasn’t fixed some of the old problems.

Last week, about 30 people from the disabled community gathered at the Center for Independent Living of South Florida to discuss complaints about access and communication, ranging from lack of American Sign Language interpreters at doctor’s offices to confusing paperwork.

Marc Dubin, director of advocacy for the Miami-based branch, has spent the last 10 years trying to ensure that barriers to access for the disabled — especially the deaf — were eliminated in Florida’s Medicaid managed care system. But he said problems still arise “at every level of the healthcare system from making appointments, to communicating with their doctors, to receiving discharge information, to receiving prescriptions.”

At the meeting, Dubin spoke on behalf of the disabled community to managed care companies and state Medicaid leaders on a conference call while attendees flicked their fists and nodded their heads — the American Sign Language symbol for “yes.”

“We cannot just sit around not understanding forms, not understanding our doctors,” said Damis Fellove, a deaf Miami man who spoke through an interpreter.

Read More  . . .Health Care

Suit May Go On in Disaster Plan for the Disabled

By Benjamin Weiser, 12/8/2012

A judge has agreed to allow a class-action lawsuit to proceed against New York City alleging a systemic failure in addressing the needs of the disabled population in planning for emergencies and disasters.

The lawsuit was filed last year after Tropical Storm Irene; the lawyers have contended that there were significant gaps in the city's plans to accommodate people with disabilities at city shelters or to evacuate them from high rises, among other claims.   ...continue reading "New York City Lawsuit over Disaster Planning for Individuals with Disabilities"