In N.Y., 'Families Cannot Be Caregivers Forever Campaign' Seeks Funding

Althea Penepent, right with her
daughter-in-law Jeanne and daughter Valerie

BYRON, N.Y. – Althea Penepent often wonders (and worries) what will become of her daughter Valerie after she’s gone. So, Althea has joined a growing number of families across New York State advocating for expanded services for people with intellectual and other developmental disabilities. The “Families Cannot Be Caregivers Forever Campaign” calls current funding in the New York State Budget completely inadequate to meet the needs of these New Yorkers, many living at home with aging parents.

Valerie is the seventh and youngest child of Althea and Richard Penepent, born Feb. 2, 1977. Althea shares that her pregnancy and delivery with Valerie were the same as her first six children. She was blindsided when her doctor came into her hospital room after Valerie was born and coldly stated, “Women over 40 shouldn’t have a child because she’s mongoloid,” then turned on his heel and left. A nurse’s aide called Richard Penepent, plowing snow in the aftermath of the Blizzard of ’77, to come talk to his wife.

More Support Needed for Adults with Autism, Survey Finds

PHILADELPHIA — Within the next 10 years, nearly half a million young people diagnosed with autism grow into adulthood. A new survey says there will be a big need for supportive services and housing for these autistic adults.

The housing and residential supports survey was conducted over the course of four weeks and included responses from 10,000 caregivers and 400 people with autism spectrum disorder.“There’s no national plan or effort to really strategically deal with so many adults with autism coming into the system,” says Leslie Long, director of adult services for Autism Speaks, which conducted the survey.

Adults Facing Challenge to Find Work, Home

ST. LOUIS -- Sam Lyss is an ideal employee.

Sam Lyss at his volunteer
job in a library.

He never misses a day at work, has an eye for detail, loves what he does and is easy to train.
“He’s a whiz at mailings,” said his mother, Jane. “If you lay it out for him and show him one time, he watches you do it once and then just turns around and starts working.”
Then there’s his work ethic.
If you give him too much work, he actually won’t leave,” she said. “They have to take half of it and hide it.”

Aging Out: 'Like Falling Off a Cliff'

Sad but powerful story focusing on the lack of adult services. It's not just Michigan. All states need to address this and the numbers demonstrate the need.

TROY, Mich. -- Nick Gammicchia knows exactly what he's going to do in the future.

Nick Gammicchia uses a driver
simulator at a driving school.

"I'm going to Hollywood to help out movie producers, storyboard artists," Gammicchia said.
He already has drawn several storyboards and even sent a storyboard and screenplay to director Steven Spielberg.
"He's got big dreams," his mother, Carolyn Gammicchia, said with a smile.

Transition Time for Teens with Autism

Now that an autism diagnosis is 10 times more common than it was in the 1980s, more children than ever before are undergoing effective early interventions and treatment plans. However, one aspect of the disorder that has yet to garner attention is the scarcity of support for young adults transitioning out of high school and into adulthood.
“There is a severe lack of knowledge for educators and parents regarding available options after the public K-12 system,” says Rodger Stein, M.A., an instructor at UC Davis Extension and professor of psychology with the Los Rios Community College District who specializes in behavior supports for youth with high-functioning autism or Asperger syndrome. “We have to get to the point where our students are the ones driving their own transitions based on their own futures.”