A National Crisis: Lack of Choice and Approrpriate Care and Services

Across the country, tens of thousands of individuals with developmental disabilities, including autism, are suffering due to lack of access to appropriate care and services.The numbers representing present and future need are alarming.  Almost all states have waitlists for accessing adult support services, with more than 280,000 individuals with developmental disabilities, including autism, going without necessary care in 2013.  Almost 1 million  individuals with developmental disabilities, including autism, are still living with caregivers over the age of 60.  In the next decade, over 800,000 on the autism spectrum will transition to adulthood.So where do we go from here?

Autism Support Program Guided Students Through College

Like many college students, Max Skula and Merlin Moore, aren’t sure what their future holds when they graduate.  They hope to find jobs or maybe go to graduate school after earning some money. 

Merlin Moore, left, and Max Skula.

The two seniors – who will graduate from Rutgers May 18 – try not to think too far ahead, looking instead at how much they have progressed as college students and promising that they will stay in touch once they go their separate ways.This might not seem unusual. But Skula and Moore were diagnosed as children with what was once called Asperger’s Syndrome, a mild form of autism characterized by social awkwardness that affects a person’s ability to communicate effectively with others, and is now on the autism spectrum.

'Forgetting Is Not an Option'

WILLOWBROOK -- The horrors endured at the former Willowbrook State School for developmentally disabled children and adults were remembered Wednesday afternoon at the College of Staten Island's 21st annual Willowbrook memorial lecture at the Center for the Arts Recital Hall.

The theme of this year's lecture was "Forgetting is Not an Option: Tragedies and Triumphs of American Deinstitutionalization."

A Mother's Decade-Long Journey for Son's Diagnosis

For more than a decade Natanya Dugall tried in vain to find a diagnosis for her son that would explain his vision, speech and movement impairments.Dugall had noticed something was wrong with her son Grayson the day after he was born. Grayson was so fussy even the nurses took notice and Dugall’s mother pointed out her son’s eyes were different sizes and asymmetrical.

“Truly within 24 hours being born we knew there was something wrong with the vision,” said Dugall. The kind of changes made to Grayson’s eyes made doctors suspect a genetic malfunction that could suggest other more serious syndromes.However, initial genetic testing turned up nothing. It would take more than a decade for new technology to develop so that Grayson could be diagnosed.

Soldier-Turned-Teacher Honored for Work in Special Education

To retired U.S. Army Sgt. Garry Lawson, drill sergeants and school teachers face four types of learners:The willing and able, the unwilling and able, the willing and unable, and the unwilling and unable.

The first group isn't necessarily easy. Advanced kids and advanced soldiers need attention to reach higher. And the last group isn't always a lost cause. They just need different incentives, as do those in the middle groups.

Bill Would Help Parents Save for Future of Children with Special Needs

When Michael Carney told his daughter Olivia about her meeting with U.S. Sen. Bob Casey, the red-headed 6-year-old with Down Syndrome said she'd need a new dress.

A new outfit was no problem, but for Olivia to have the fulfilling and independent life her parents envision, they will have to put money away to pay for her care as an adult.

Speaking Monday to parents and advocates of the intellectually and developmentally disabled, Casey said he's hopeful a measure to help families like the Carneys plan for the future will soon become law.

Environment Just As Important As Genetics in Finding Causes of Autism

A large study in Sweden has shown that genes are just as important as environmental factors in assessing the causes of autism.Researchers were surprised to discover that the inheritability of the neurodevelopmental disorder was about 50 percent -- much lower than previous studies that put it at 80-90 percent -- and that it was equal to environmental causes, according to the study published in the Journal of the American Medical Association.