Sometimes to make a point about the needs of the disAbility community, we have to tell stories that are very real but aren't so pretty. And, every time we open up to reporters, there is chance for human error and misinterpretation. That said, I have been on both sides of the reporter pad and I think the reporter did an excellent job with a complicated story. She completed the 30-minute interview with me at 4:30 p.m., filed her story sometime that evening and it appeared as follows the next morning. I do not recall ever saying that Grace had self-injured. She has, however, but would not be classified as "self-injurious." Two advocate friends suggested I ask for a correction when I clarified this on my Facebook wall. However, I left it because this is very true for many families much more desparate in their wait for services. Also, I do not advocate the use of the word "suffer" in regards to autism. It is the way my daughter is born. Yet, such wording is, again, part of the surrender that I believe must occur when taking one's story public.
From The Tennessean by Anita Wadhwani. Front page story, Thursday, October 24, 2013
At 19 years old, suffering from autism, severe speech and language disorders and other intellectual disabilities, Grace Walker Goad has been on a waiting list for services from the state Department of Intellectual and Developmental Disabilities for more than half her life.
She cannot cook, drive, take public transportation or communicate. In the past, she has tried to injure herself. Federal rules allow her to attend public school until she is 21. Without help from the state agency, her mother, Leisa Hammett, is worried about what comes next.
Goad’s 10-year wait for services is not unusual, advocates say. She is one of more than 7,100 state residents with intellectual disabilities who cannot take care of themselves and are waiting for a long-term-care program run by DIDD through special funding from the federal Medicaid program.
Some have been on the list since 1994, waiting for one of 8,447 slots.
The waiting list is one of nine “serious problems” identified in a newly released audit of the agency by the state comptroller’s office. Currently, only those in “crisis” situations are allowed off the list. The agency defines “crisis” as someone who is homeless, whose caregiver has died or who is a danger to himself or others.
Goad does not meet those criteria, but she still needs professional care that her mother, a self-employed writer, said she alone cannot provide.
“What happens to a lot of these young adults after they leave school is they just sit on the sofa,” said Hammett, 53, who cares for her daughter around the clock when Goad is not in school. “What comes with a lack of services is a regression of all those skills that federal government requires schools to provide.
“We unfortunately live in a state that has no plan. Tennessee has no safety net.”
More budget cuts
The rest of the story is here.