Connecticut Set to Address Wait List

HARTFORD – The governor's budget chief said officials over the next year will find ways to unfreeze a stalled list of more than 2,000 people with intellectual disabilities waiting for services, which advocates have identified as a crisis.
While Ben Barnes stopped short of saying the state will allocate money, he said the Department of Developmental Services will "develop strategies to address and fund" the waiting list – a queue that never moves unless a person's parents or care givers become incapacitated or die.
Barnes' assertion immediately struck a chord with advocates.

Clinton Outlines Autism Plan

This week in Iowa, Hillary Clinton announced a detailed plan to address autism, including additional resources and research. NPR's Kelly McEvers speaks with Ron Fournier, a columnist for National Journal and father of a child with Asperger's syndrome, about the plan and the significance of a presidential campaign taking on the issue.

NYSARC Sees Rough Year Ahead

Not exactly an uplifting story for the start of 2016, but important nonetheless.

People with developmental disabilities and their families are really worried about the New Year. Leaders at NYSARC, New York State’s largest advocacy and helping agency for disabled people, said they’re facing potential budget cuts and strict, new rules from the state. They also fear caretakers might quit their jobs in search of higher pay.

A Father's Guilt Prompts Fight for Reform

Had the opportunity to hear Murray speak and read from his powerful book. Compelling to hear a father's perspective. What seemed like hitting the lottery when his daughter was placed in Willowbrook turned into a nightmare for Murray, as he struggled with guilt and anger, and eventually began a fight for major reform.
 
STATEN ISLAND, N.Y. -- Murray Schneps' story begins with the birth of the first of his four children, a daughter, Lara, in 1968. She is a beautiful red-head who is profoundly retarded, blind, and so physically handicapped that she does not develop the capability to sit or stand. She has difficulty swallowing and cannot speak.

In his recently published book, "I See Your Face Before Me," Schneps tells his story as a parent in turmoil over leaving his daughter at Willowbrook, whose guilt and anger sharpened his resolve to champion reform.

A Mother's Story of Raising Her Child with Down Syndrome

One mother's journey, bumpy for certain, but ends with acceptance and Seeing Beyond Disability.

As a 30-something living in New York City, Gina LeVeque had an exciting career in journalism, a passport with stamps from Italy, and a long-term boyfriend. To an outsider— and even to LeVeque at the time— her life looked picture-perfect.

When LeVeque learned she was pregnant in the fall of 2007, she and her boyfriend celebrated. They talked about getting married and building a family.

But during a doctor’s visit that October, LeVeque— like hundreds of other expectant moms in the United States today— received news that would shake her seemingly idealistic world: Her child, which she had been carrying for about 14 weeks, had Down syndrome.

An Open Letter to Jet Blue

Interesting Blog post by Shawna, a mother of two children with special needs. It originally appeared on her blog — Not the Former Things

Dear Jet Blue Airlines,

I am writing this post to thank you.My son has high functioning autism and, because of the custody arrangement between his father and I, we fly 7-9 times a year out of sheer necessity. Flying, with all of it’s loud announcements and crowded waiting areas and unusual smells, is quite frankly torture for him. He has acute sensory processing issues that affect us even in simple every day situations, so you can imagine how complicated airports and airplanes are for us.

When Caregivers Need Healing

“This has happened before,” she tells herself. “It’s nowhere near as bad as before, and it will pass.”Robbie Pinter’s 21-year-old son, Nicholas, is upset again. He yells. He obsesses about something that can’t be changed. Even good news may throw him off.

Dr. Robbie Pinter and her
son, Nicholas.

So Dr. Pinter breathes deeply, as she was taught, focusing on each intake and release. She talks herself through the crisis, reminding herself that this is how Nicholas copes with his autism and bipolar disorder.

Lifetime Cost of Autism Tops $2 Million

U.S. and U.K. scientists have completed the most comprehensive analysis of the costs associated with supporting a child with an autism-spectrum disorder (ASD) over a lifetime and found that those whose ASD is linked with intellectual disability can accrue up to $2.4 million while those without intellectual disability require about $1.4 million in medical, nonmedical and indirect costs. And that’s on top of the average $241,000 that it takes to raise a child to age 18 in the U.S.

Busting Autism's Myths with a Camera

From across the pond.

Since her young son was diagnosed as autistic, Sara Dunn has been attempting to help "challenge the myths surrounding autism" with a camera.

The photographer has been documenting her experiences with her son and other families affected by autism through photography.Ms Dunn, 27, from Chester, stays with families for 48 hours to take images and wants to stage a public exhibition of her work, Admiring Autism.

The Boy Who Ran Away: In-Depth Look at Life and Death of Avonte Oquendo

The doctor told the mother not to worry, that the baby was only a little developmentally delayed. Some kids just do it on their own time, he said. So she brought him home and waited.

Vanessa Fontaine had the background, as a nurse and an experienced mother, to understand that something was different about Avonte. He was one year old and still not making eye contact. He’d started talking, saying “Mommy” and “Daddy,” but then just as suddenly he’d stopped saying anything at all. There were other symptoms, too. “He’d watch TV, but he wouldn’t play with toys,” she remembers. “He didn’t like any toy that I would buy him, no toy at all.”

Study: Autism Begins In the Womb

The symptoms of autism may not be obvious until a child is a toddler, but the disorder itself appears to begin well before birth.

Brain tissue taken from children who died and also happened to have autism revealed patches of disorganization in the cortex, a thin sheet of cells that's critical for learning and memory, researchers report in the New England Journal of Medicine. Tissue samples from children without autism didn't have those characteristic patches.

Don't Keep Sports Off Limits

Michael John Carley is the Founder of GRASP, and the author of "Asperger's From the Inside-Out" (Penguin/Perigee), "The Last Memoir of Asperger Syndrome" (TBD), and numerous articles. In 2000, he and one of his two sons were diagnosed with Asperger's Syndrome. 

When you grow up with any kind of developmental disability it means that you do not grow as everyone else does. Shut out of the rituals of your peers -- the "developmentally-appropriate" experiences others refer to -- you will grow in different, often unseen ways. We positive types like to mention that there are some areas where you might find yourself surprisingly ahead of your peers. But, as we all know, not only will the areas where we are behind get the most notice (as that is what others will more clearly see), being in any kind of minority makes life harder, not just "different."

For autism spectrum kids who are better able to navigate greater society, sports are one of those rituals. But unlike fellow proponents of "more athletics for spectrum kids," my concerns don't rest solely with the exercise benefit. In 10 years of running the world's largest membership organization for adults (GRASP), I saw inestimable damage because people had grown up terrified of competition. In some cases, with folks whose ages range from the 20s to the 80s, I even saw a commitment -- rather than a conditioning -- towards avoiding rivalry. They were so determined to avoid creating, or engaging in any kind of battle with their fellow humans that they wouldn't even utter the words, "I can do better," which, as we all know, is wherein we compete against ourselves.

Parents Nurturing, Affection Can Shape a Child's Brain Development

Parents do a lot more than make sure a child has food and shelter, researchers say. They play a critical role in brain development.
More than a decade of research on children raised in institutions shows that "neglect is awful for the brain," says Charles Nelson, a professor of pediatrics at Harvard Medical School and Boston Children's Hospital. Without someone who is a reliable source of attention, affection and stimulation, he says, "the wiring of the brain goes awry." The result can be long-term mental and emotional problems.

Study Puts Annual Cost of Care for Child with Autism at Over $17,000

Substantial costs come along with an autism diagnosis, researchers say in a new study that attempts to put a price tag on the care needed by children with the developmental disorder.When factoring expenses for health care, schooling, caregiving, therapy and similar family-coordinated services, a study published online Monday in the journal Pediatrics suggests that an autism diagnosis brings an annual cost of $17,081 per child.

Customers Protest Whole Foods Firing

There are times when a snow day should just be a let-it-go day. People tend to overreact in ways that could be avoided if everyone just chilled out and waited for the plows to do their work.The folks at a Chicago Whole Foods store may be reconsidering a snow-related action that brought once-loyal customers into the snowy streets to protest an action taken against a working mom with a special-needs child. Such a scene was starkly at odds with the upscale grocer’s carefully crafted image of good deeds and high-quality products and service.

Opinion: Do We Really Need Cure for Autism?

Does autism need to be cured? I am forever reading articles, mainly on American sites, that claim they have found a 'cure' for autism. These are observed when scrolling down my Twitter feed or conducting online autism research, I mainly look for interesting news stories and new interventions, ways in which I can help my child. I use the word 'help' rather than 'cure' as this word sits uneasy with me.

New School Filling an Educational Void

One of those times we are proud to share a story about our elementary school -- Manhattan Star Academy -- for children with special needs.

Manhattan Star Academy, a privately-funded, non-profit school, hopes to bring to the Upper West side and Manhattan something that many parents of special needs children feel is lacking in the city school system: a place for their child.The Academy is part of the YAI network, a network of schools, training and health and human service agencies in New York and New Jersey that focuses on special needs children, teens and adults. Manhattan Star Academy is in its fledgling stages, with 10 children enrolled at the YAI Central Building in Chelsea. But by next year, the school for children ages 5-12 (the first school in the network above the preschool level), hopes to be open at their new Upper West side location, for 55 students eventually, right around the corner from Lincoln Center.

Parents Create Custom Jobs for Their Children with Autism

Lori Ireland and a handful of other parents in Chapel Hill, N.C., had a simple dream: They wanted their teenage children to be able to have jobs someday. Sitting around with nothing productive to do would be unsatisfying and frustrating for their kids, not to mention expensive.But they also knew the dismal truth: It's tough for someone with autism to get a job.So, like an increasing number of parents with children on the autism spectrum, Ireland and her peers set out to employ them themselves. Their non-profit Extraordinary Ventures businesses, including one cleaning city buses and another making candles and other gifts, now employs 40 people with developmental disabilities in the Chapel Hill area.

Opinion: For People with Disabilities, One Size Just Doesn't Fit All

A well-intentioned plan to provide greater independence to people with disabilities is facing fallout from a surprising bunch:A small, but vocal group of families and caregivers of people with disabilities.At the final of four public listening sessions, this one in Rochester in August, parents of children with severe developmental disabilities shared their heightened concern about the state’s “Olmstead Plan.” The plan seeks to discourage institutional settings in favor of community-based living arrangements.

Autistic Young Adults Less Likely to Have Jobs or Live Independently, Studies Find

Young adults with autism are less likely to find work or live on their own than their peers with other kinds of disabilities, two new studies show.
The studies detailed the fates of a national sample of 20-somethings who had received special-education services in high school.