Superhero Project Takes Off

A little inspiration. Happy Thursday.

In looking at her son, Shawna Burbank sees a happy, healthy and active little boy with unlimited potential. She feels, though, that some people may wrongly view him as a child who is suffering because he has Down syndrome. 

So she was excited to participate in The Superhero Project, which features photos of special-needs kids dressed up to show off their inner superhero, a way to help them feel confident and strong while raising awareness about children with disabilities or other challenges.

After Losing Autism Diagnosis, Study Finds Need for Educational Support

A study examining children diagnosed with autism spectrum disorder whose social and cognitive symptoms had resolved 4 years later has found that most continued to have emotional and behavioral symptoms that required special educational support.
The research, presented at the Pediatric Academic Societies annual meeting in San Diego, CA, aimed to investigate whether any deficits remained after the resolution of early symptoms to the extent that children no longer met the criteria for autism spectrum disorder (ASD).

Princeton Provides Funds for Home

PRINCETON — A contribution of $400,000 from Princeton will turn a home on Hill Top Drive into affordable housing units for adults with disabilities.

Council unanimously adopted an ordinance Monday night to purchase 9 Hill Top Dr. at the corner of Route 206 with affordable housing trust funds. It will be renovated into a group home for adults of low to moderate incomes.

NYS Assemblyman Proposes Bill to Help Individuals with Autism Find Jobs

ALBANY, N.Y. -- Assemblyman Santabarbara will be unveiling his proposal to help those with autism in the workplace.

While Santabarbara says he has tried to address the issue of unemployment for those on spectrum in the past, the proposal he will be unveiling Monday will help better tackle the ongoing concern.

Autism Speaks' Grants for Swim Lessons

"Ian, Ian, Ian," squeals 8-year-old Anna as she spots her friend across a pool in the South Bronx. She splashes with excitement until he gingerly joins her in the water.

Five years ago, Anna wouldn't even utter "Mama."
Anna and Ian, 7, are on the autism spectrum. Among their challenges is learning how to swim. With 1 in 68 American children falling on the spectrum, many with a penchant for wandering near water, parents and advocates believe swim safety is crucial.

Connecticut Parents Fear Budget Cuts

Like many 20-year-olds, Jessica Zangrillo stands at the cusp of an uncertain future.

But, unlike others her age, Zangrillo isn't about to move from college into the professional world.

Michelle Rivelli sits with her
daughter Jessica Zangrillo.

 The West Haven resident, who is autistic and dyspraxic, will be finishing class at a special education program. Her next step is supposed to be a state-funded day program that provides employment counseling, therapy and a range of other services to those with intellectual disabilities.

However, the Connecticut Department of Developmental Services, which funds these services, was one of several departments that would have to cut programming under the proposed state budget.

NJ Medicaid Spending Up, But Rate of Growth Slower Than Most States

New Jersey spent 14.6 percent of its total revenues on Medicaid health coverage for low-income residents during the 2013 fiscal year, a full 2 percent more than the 2000 fiscal year, according to a new report from The Pew Charitable Trusts.

But that growth in New Jersey’s Medicaid spending as a share of total state revenue was still slower than the overall national trend compared to other states tracked by Pew over the same period.

Report Finds Limited Opportunities for Adults with Autism

Autism does not end when children reach adulthood—yet most public awareness, public policy and research about autism focus on the needs of children. Families, service providers, community leaders and policymakers still know too little about the experiences and outcomes of young people on the autism spectrum as they enter their adult lives. What are their experiences with transition planning, living arrangements, social participation, employment, postsecondary education, health and mental health, safety and other domains?

Answers to these and other critical questions, addressing life outcomes beyond clinical interventions, are the focus of a report issued today from Drexel University’s A.J. Drexel Autism Institute, from its Life Course Outcomes Research Program. The “National Autism Indicators Report: Transition into Young Adulthood” is a comprehensive report (available free online) that presents new findings about a wide range of experiences and outcomes of youth on the autism spectrum between high school and their early 20s, including new safety and risk indicators for young adults with autism. The report describes the indicators now available and serves as a call to action to fill the remaining large gaps in knowledge.

Matching Keen Eye for Detail and Routine to Jobs in Technology Sector

As our International Conference nears (May 4-7 in NYC), it makes us proud to see former keynote speakers have such an impact. Thorkil Sonne of Specialisterne is just one example.

Although he enjoyed his first job in software development when he left university in the late 1970s, Thomas Madar found difficulty in fitting in. Like many people on the autistic spectrum, the now 58-year-old had problems in the working world and was dismissed as a poor communicator.

Thomas Madar

Over the coming years, he went from courses in third-level education to jobs and back again, but sometimes struggled in interviews where, by his own admission, he would not sell himself as someone who was likable and who fitted into teams.

When he got his current position as a software tester at Ernst & Young last year, he says his social skills had improved over the years. Also at hand was Specialisterne (Danish for the Specialists), a company which strives to match up people with autism to jobs where characteristics such as attention to detail and a an adherence to structure act as a competitive advantage.

Swim Team for Teens with Autism

A glimpse of what looks like an amazing documentary on The New York Times' Well blog. 

Team sports are a right of passage for many children, but kids with disabilities often can’t participate. A new documentary called “Swim Team” chronicles the Jersey Hammerheads, a swim team for children with autism.

“A lot of these kids don’t have friends. At one time or another, all of our kids have been ostracized,” says Michael McQuay, the Hammerheads’ coach. “For them to be part of a team is unbelievable.”

Tribeca Film Festival Documentary Explores Autism and Love

For all the research, hysterical media coverage, and hand-wringing there has been about autism in recent years, there’s shockingly little information on where the disorder overlaps with the most

fundamental thing about being human: love. People with autism have a hard time expressing themselves and communicating with others, but many of them express a desire for relationships—many are even married.

Iowa Official Fears 'Disaster' with Move to Medicaid Managed Care

Iowa Senate President Pam Jochum said Thursday she's worried that vulnerable Iowans face a "disaster" as the state implements a cost-saving plan to hire a private business to manage the Medicaid health insurance program.
Jochum, a Dubuque Democrat who has an adult daughter with severe developmental disabilities, said her family has the financial resources to care for her daughter if necessary. But she feels obligated to speak on behalf of other Iowa families who don't have enough money to care for their loved ones if Medicaid services aren't available.

Workers Still on Job After Settlement

ALBANY — Some of the employees named in a $2.25 million lawsuit stemming from the death of a client at the O.D. Heck facility in Nisakayuna continue to work for the state, caring for developmentally disabled people.

Bills Strengthen Maryland Group Homes

Advocates for the disabled are hopeful that legislation passed by the General Assembly will give Maryland regulators more tools to fix dangerous conditions at state-licensed facilities — such as the one where a 10-year-old Baltimore boy died last year.

The two bills — the most recent of several reforms enacted after a Baltimore Sun investigation into group homes — empower regulators to respond more aggressively when they find problems at such facilities. The reforms are designed to improve how regulators monitor the financial stability and health care quality of state contractors hired to care for disabled adults and children.

Fighting for Sheltered Workshops

It's a hectic day at Production Unlimited in Watertown, N.Y. Everyone has to drop his regular work — making plastic binders, safety equipment, office supplies — for a huge order.

Beth Carpenter punches hole after hole into colored plastic tags. She and her co-workers are paid based on how fast they work, usually well below minimum wage. Carpenter has done all different kinds of tasks here for more than 15 years.

"And I like working here every day," she says. "I work here five days a week. That's why I'd like to make sure we fight to keep this place open."

It's no secret that New York state is phasing out sheltered workshops like this one. 

Adults with Autism Aging Out and Their Mothers Who Stick By Them

We were proud to work with Dateline NBC on last night's segment "On the Brink." This is a short version of Kate Snow's report on adults with autism aging out of the education system, which aired on the Today show.

The producer Mary McAfee, who spent a great deal of time researching and meeting families, also wrote this piece about the mothers who go above and beyond to help their adult children.

In Autism, Brain's Response to Speech Speaks Volumes

When language delays or social detachment mark a baby for a diagnosis of autism, dark clouds cast that child's future in shadow. But researchers have discovered a test that can reliably forecast, some time between a baby's first and second birthday, whether those dark clouds will linger or dissipate.

The new study, published Thursday in the journal Neuron, took eight years -- and the participation of 103 babies -- to complete. But if its findings hold up, all it will take in the future to clarify an autistic child's prognosis is a nap, a mellifluous nursery rhyme and a magnetic resonance imaging scanner.

Editorial: Reject Missouri Medicaid Plan

A hasty and ill-timed attempt to make a major policy change regarding how to oversee health care services for about 200,000 Medicaid recipients in Missouri requires a quick burial.

In the early hours of Wednesday morning, Republican Sen. Kurt Schaefer succeeded in pushing through a plan to extend the use of for-profit companies to manage Medicaid in much of the state’s rural areas.

Read more here: http://www.kansascity.com/opinion/editorials/article17990141.html#storylink=cpy

Military Uniforms for Calming

Searching for a way to soothe her son’s anxiety, a South Carolina mom found a solution with a little help from a sewing machine, a few used military uniforms and rolls of pennies.

Now, Crystal Lyons, whose son John was diagnosed with autism spectrum disorder at 2, is sharing her home-made weighted vests with the world, sewing them for any family in need for free through her charity, Vests for Visionaries. She hopes parents see the same kinds of results she sees when her little boy dons a vest.

Records Reveal Abuse, Neglect Led to 13 Deaths in California Centers

State-run homes for the developmentally disabled have been directly responsible for 13 deaths of patients since 2002, according to records from the California Department of Public Health.

The documents obtained by the Center for Investigative Reporting show abuse, lack of supervision and neglect led to the deaths in the homes, which provide services for men and women with serious cases of autism, cerebral palsy and other disabilities.

Cuts Threaten Illinois Autism Services

SPRINGFIELD, Ill. — Hundreds of families in the Springfield area and thousands across the state face the possibility of abruptly losing services for their autistic children after an immediate $1 million budget cut by Gov. Bruce Rauner.

“It was totally unexpected,” Russell Bonanno, director of The Autism Program’s statewide network, said Monday at a news conference at TAP’s Springfield headquarters.

Physicians: High Court's Medicaid Ruling Blocks Equal Access

Organized medicine is complaining that a 5-4 decision last week by the Supreme Court unfairly bars healthcare providers from suing state governments over paltry Medicaid rates.

With the door to the courthouse blocked, medical societies contend, there's little if anything they can do to force states to pay enough so that more physicians will accept Medicaid patients, ensuring equal access to care.

Senator's Son Inspires Legislation

TALLAHASSEE — As Andy Gardiner and his wife, Camille, drove home from the Orlando hospital with their newborn son 11 years ago, in shock at having just learned he had Down syndrome, they made a decision that reverberates in the Florida Legislature today.

Fla. State Sen. Andy Gardiner
with his son Andrew, Jr.

With Gardiner now in the powerful post of state Senate president, lawmakers are poised to pass legislation that will put Florida on the cutting edge in education, savings and employment opportunities for the intellectually disabled.

The package of bills reflects their decision: They would raise Andrew Jr. no differently from any other child, expecting educational attainment and independence.

Gardiner wants all such children to benefit from the same attitude.

Read more here: http://www.charlotteobserver.com/living/health-family/article17495576.html#storylink=cpy

Microsoft Launches Pilot Program to Hire Individuals with Autism

 Post by Mary Ellen Smith, Corporate Vice President, Worldwide Operations,  for Microsoft.

In honor of World Autism Awareness Day, Thursday, I had the privilege to attend and speak at an event held at the United Nations in New York City, where the theme was “Autism, The Employment Advantage.”

This theme resonates with me on two levels.
First, as a parent. I am the proud mom of Shawn, now 19, diagnosed with autism when he was four years old. Secondly, as a proud executive at Microsoft. A company that believes strongly in diversity.

A 'Prom-Posal' She'll Never Forget

It's your feel-good story of the day.

He’s a blue chip college basketball recruit. She’s a high school freshman with Down syndrome.

At first glance Trey Moses and Ellie Meredith couldn’t be more different. But all that changed Thursday when Trey asked Ellie to be his prom date.

Opinion: Why I Despise Autism Awareness Month

Thoughtful opinion piece by Kim Stagliano has authored a novel and two books on parenting daughters with autism. She is managing editor of Age of Autism. Anyone else feel this way? 

Today, you’ll be seeing a lot of blue: World monuments will be cast in blue lights, your co-workers will be wearing blue clothes, and companies will be hawking blue products. Why? April 2 is World

Autism Awareness Day, when advocacy group Autism Speaks “celebrates” its international Light It Up Blue Campaign. But while you’ll be seeing blue everywhere, I’ll be seeing RED. The feel-good frippery of Light It Up Blue cloaks an often debilitating disorder in an air of festivity, with balloons, sparkling lights and pep rallies. The campaign implies autism is a party, rather than a crisis. For families living with autism, reality is far more sober, and their needs extend far beyond “awareness.”

The Troubling Downfall of FEGS

At the end of January, the announcement that the Federation Employment & Guidance Service (FEGS) would be closing its doors blindsided many connected to the 80-year-old nonprofit agency. Amid allegations of mismanagement and funneled-away profits, and companies that say FEGS still owes them tens of thousands of dollars, some of New York City’s most vulnerable citizens — or their advocates — were left wondering what would replace the organization’s critical support services.

Corporations Find Untapped Resource

Something curious is happening in Corporate America. Business leaders are discovering a whole new source of talent they never realized existed: people with autism and intellectual and developmental disabilities. 

Of course, this population has been there all along. But now that their bottom-line value is beginning to be understood, best of breed companies are competing to capitalize on the myriad opportunities presented by hiring people who, until now, have been roundly ignored

High Court Rules Against Providers

WASHINGTON — Private health care providers cannot sue to force states to raise their Medicaid reimbursement rates to keep up with rising medical costs, the Supreme Court ruled Tuesday.
In a 5-4 decision that broke across ideological lines, the justices said medical companies have no private right to enforce federal Medicaid funding laws against states if Congress has not created such a right.