NY Assembly GOP Urge Restoration of Cuts

ALBANY -- Assembly Republicans today urged the Democratic majority to reduce the $425 million in tax breaks for film productions and restore a $90 million cut to the state Office of People with Developmental Disabilities.

In the 2013-14 budget, lawmakers added back $30 million of a $120 million cut to the agency proposed by Gov. Andrew Cuomo. The $90 million cut that remains should be funded through lowering the tax breaks given to Hollywood, Assembly Republicans said.

New Jersey Assembly Passes Bill Preserving Institutions

TRENTON — State institutions for people with developmental disabilities would be preserved in four regions of the state under a bill the state Assembly approved today.

Experts Find Being Alive Tied to Autism

Our favorite story of the day. It's Friday, time to lighten up a little bit. If you're having a tough day, you may need to read this twice.

(April 26, 2013, Albatross University) — In a dramatic new breakthrough, researchers have concluded that autism is caused by being alive.

“This is a great day for medical science,” said Dr. Ernest Eagerly, Director of the Department for the Medicalization of Humanity at Albatross University. “Our research team sorted through a myriad of studies linking autism to everything from pet shampoo to freeway traffic to creases in the placenta. After controlling for variables in the research such as usefulness, rationality, shameless self-promotion, and general hysterical posturing, we determined that all of the studies had one thing in common: people with autism are alive.”

Fla. Legislator Seek to Shrink Wait List

TALLAHASSEE – Backing a proposal by Gov. Rick Scott, House and Senate budget negotiators have agreed to spend $36.3 million next year to provide services to hundreds of people with developmental disabilities who have been stuck on a waiting list.

The waiting list has grown to about 22,000 people over the years, as the state Agency for Persons with Disabilities ran deficits in its main program for providing services. But APD officials say they expect to avoid a deficit this year, and Scott included money in his proposal 2013-14 budget to start chipping away at the waiting list.

Audit Found Contractors Overbilled Tenn. Developmental Disabilities Agency

NASHVILLE, Tenn. -- The state system that cares for severely disabled adults didn’t hold providers who broke the rules accountable for their actions, even when it happened repeatedly. Those were the findings of an audit, released Thursday, of the Tennessee Department of Intellectual and Developmental Disabilities.

Study Ties Autism Risk to Creases in Placenta

After most pregnancies, the placenta is thrown out, having done its job of nourishing and supporting the developing baby.But a new study raises the possibility that analyzing the placenta after birth may provide clues to a child’s risk for developing autism. The study, which analyzed placentas from 217 births, found that in families at high genetic risk for having an autistic child, placentas were significantly more likely to have abnormal folds and creases.

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Seizure Drug Used During Pregnancy Increases Baby's Risk of Autism

Children born to mothers who took the anti-seizure drug valproate were five times more likely to be born with autism than those whose mothers didn’t take the medication, a Danish study found.
The epilepsy drug was also tied to a three-fold increase of autism spectrum disorder, which includes Asperger syndrome and other developmental disorders, according to research published yesterday in the Journal of the American Medical Association.

Young Adults with Autism Can Thrive in High-Tech Jobs

The job hunt is complicated enough for most high school and college graduates. But for the growing number of young people on the autism spectrum, it is a daunting challenge. Despite the obstacles these people face

Amelia Schabel works with art director
Andrew LaBounty at the nonPareil Institute
in Plano, Texas.

trying to find work, there's a natural landing place: the tech industry.

10 Things We Know About Autism That We Didn't Know a Year Ago

Just two decades ago, autism was a mysterious and somewhat obscure disorder, commonly associated with the movie Rain Man and savantism. It affected an estimated 1 in 5,000 children.
How times have changed. Today, thanks to awareness and advocacy efforts, people now have a much better understanding of autism. The Centers for Disease Control (CDC) now estimates that a staggering 1 in 88 children, including 1 in 54 boys, in the United States has been diagnosed with an autism spectrum disorder. Another recent federal report presented data that autism prevalence among school-aged children, as reported by parents, is 1 in 50. An Autism Speaks-funded South Korean study, which used a more rigorous methodology, found a prevalence of 1 in 38 students.

Campaign to End 'R-Word' Spreading

Greg Falk was in a department store in the Spokane Valley Mall a few years ago, waiting in line at a cash register situated near a display of dresses. A woman, who looked to be in her early 20s, pulled a dress off the rack and said, “Oh, this dress is so retarded.”Falk, executive director of The Arc of Spokane, an advocacy and service organization for people with disabilities, didn’t say anything.But he would today.

Up to 10 Percent Have Learning Disability, British Researchers Find

LONDON -- Up to 10 percent of the population is affected by specific learning disabilities such as dyslexia and autism, British researchers say.

Autism Hits Big Screen at Tribeca Festival

Long post because this is a subscriber only site. This film sounds amazing!

By BRUCE BENNETT

By and large, the 1.7 billion people who ride the city's subways each year share the same complaints about the system—rising fares, declining service, overcrowding. But when filmmaker Sam Fleischner embarked on his second feature, "Stand Clear of the Closing Doors," which makes its premiere Saturday at the Tribeca Film Festival, he became intimately acquainted with a straphanger issue well outside the typical range.

"The subway is like the worst place to make a narrative movie, ever," Mr. Fleischner said recently. "There's so many variables. If you go in with a plan, the chances of achieving your plan are very slim."

Enlarge Image

SeeThink Films

Jesus Sanchez-Velez stars in 'Stand Clear of the Closing Doors' as an autistic boy who rides the subway alone for 11 days after a fight with his mother, played by Andrea Suarez Paz.

Mr. Fleischner shot his debut feature, "Wah Do Dem" (co-directed with Ben Chace) on a ship that became available via a pair of cruise tickets. For his sophomore film, he was inspired by the real-life story of a 13-year-old autistic Bronx boy who rode the subway by himself for three days last April. The story—which ended happily with the boy being found in Brooklyn after relying on the kindness of strangers—made local headlines at the time. But the director discovered that the incident was not unique among families with children on the autism spectrum.

"That introduced me to the phenomenon they call 'eloping,'" Mr. Fleischner said. "Something like half of all autistic kids run away at some point. Specifically in New York, they are often attracted to the subway system."

In "Stand Clear of the Closing Doors," that attraction lures autistic teen Ricky (Jesus Sanchez-Velez) away from his family's Rockaway Beach apartment after a confrontation from his mother, and onto the A train, where he encounters an ever-changing cast of characters. As his mother, Mariana (Andrea Suarez Paz), desperately searches for her son above ground, Ricky finds new levels of danger, autonomy and awareness below, as practical necessities like food, water, plumbing and companionship force him out of his shell to engage with his mobile environment. Unlike the true story that inspired the film, Ricky spends 11 long days on the subway, amplifying his chances for disaster and his mother's anguish.

Enlarge Image

SeeThink Films

Andrea Suarez Paz

Casting the part of Mariana was a literal walk in the park. "We met in Prospect Park," Ms. Suarez Paz said. "I was walking around with my son and Sam came up to me and said he was making a film. I've been an actress in New York for nine years and, you know, everyone says they're making a film. But when I read the script I was struck by it as a mother. What if your child goes missing for long enough that you might have to consider never seeing it again?"

Filling the role of Ricky proved more challenging. "I wasn't interested in working with a child actor and trying to tell him what it's like to be autistic," Mr. Fleischner said. "I don't really know what it's like to be autistic. I really wanted to cast a kid that was actually on the spectrum."

So rather than go through the usual casting channels, the production reached out to families via autism blogs. "We couldn't find anyone in New York," Mr. Fleischner said. But an audition tape sent by a Florida family brought Mr. Sanchez-Velez to the filmmaker's attention and, ultimately, to the film. "Jesus looked the right amount like Andrea and he's a very patient and hard-working kid," Mr. Fleischner said. "He's really smart and really compassionate."

During the course of filming, much of which was funded by an online donations campaign, both virtues were tested for cast and crew alike. "There was a huge learning curve of figuring out where we could shoot and when," Mr. Fleischner said. Accomplishing the film's ambitiously long and frequently improvised scenes on an in-service R46 A express train required commuter acumen as much as filmmaking expertise.

"You learn the gaps," Mr. Fleischner said. "There's that huge gap between 59th Street and 125th Street on the A, so if I needed a substantial scene, that was where I would try to get it. We had 5.5 minutes to shoot without pulling into a station."

In lieu of filming permits, the small crew employed a different form of paperwork when dealing with inquisitive MTA employees. "We all were armed with the MTA rulebook," Mr. Fleischner said. "You don't need permits. Whenever anyone would stop us we'd show them the book and say, 'Actually...'"

Many of the film's background performers were cast from the A train itself.

"We were inclusive about it," Mr. Fleischner said. "'This is what we're doing, if you don't want to be in it, no problem, but if you're interested in it...'"

Straphangers who pitched in had only to sign a release and be photographed. "We had a little picture frame and in Sharpie it said, 'My name is [blank].' A lot of times people would actually stay on and keep riding with us if they didn't have anything important to do."

No amount of planning, however, could have prepared the production for how it might navigate the arrival of superstorm Sandy. "We had just finished our first day on the subway," Mr. Fleischner said of the storm surge that devastated the film's above-ground Rockaway locations, "pretty much demolished" the director's own home and knocked out train service for weeks. "We had to take almost a month off," he said.

A generator brought in from Vermont helped the production get back on its feet, and storm footage shot by Mr. Fleischner, as well as script revisions made during the halt, made Sandy a part of the finished film instead of its undoing. Ms. Suarez Paz offered that, if nothing else, the real-life disaster helped her get deeper in touch with her fictional mother's loss. "When we were finally back there and shooting [in Rockaway], we were in so much shock," she said. "Creatively it made a lot of sense to me—emotionally and mentally. I think I used that."

Walmart Overlooked Harassment of Worker with Developmental Disability

From 2005 to 2011, Jamie Wells was subjected to sexual harassment by a male co-worker at the Walmart in Akron, Ohio. Three weeks after Wells, who has developmental disabilities, filed a complaint, she was fired from the job she had worked at for more than 11 years. The U.S. Equal Employment Opportunities Commission (EEOC) has now filed a lawsuit against Walmart, alleging that the company violated the federal American with Disabilities Act (ADA) on the grounds that it failed “to provide reasonable accommodations to Wells through adequate training, supervision, and communication regarding its anti-harassment policies.”

Flying with Autism

Air travel can be stressful for even the most experienced road warriors. But it can be much tougher for families with a child on the autism spectrum who becomes unnerved by the lines and security procedures at the airport and the tight quarters and strange noises on an airplane.

For the Littlejohn family it was dreadful. In 2010, they had plane tickets to fly from Boston to Orlando for a vacation at Walt Disney World. "My son Henry, then 6, has autism but had traveled well before. This time he was very anxious on the way to the airport. And by the time we got on the plane he was melting down; kicking and screaming," said Susie Littlejohn. Before the plane could take off, they had to make a decision: Her husband ended up going on to Orlando with their older son, Jack; Henry and his mom got off the plane and went home.

Study Suggests Autism Has Strong Genetic Link in Mice

A new study suggests that, at least in mice, the most important factor causing autism is likely an individual's genes.

Scientists have long been stumped by what causes autism, with many suggesting that toxin and pollution exposure and certain medications taken by pregnant mothers could play a role in causing autism.

Couple Develop App to Help Autistic Daughter

DURHAM — Pete and Jennifer Minnelli recently launched two applications built to help their little girl navigate social situations.

In June, the couple also founded rubycube, a software development company that focuses on creating apps for children who display characteristics associated with high-functioning autism, attention deficit hyperactivity disorder and other disabilities that could cause a range of social, communication and behavioral challenges.
On March 26, rubycube launched the first two apps from its storysmart series. The series includes six different characters in six interactive animated stories that seek to teach children ages 6 to 12 how to navigate and react appropriately to a range of social situations.

Read more here: http://www.newsobserver.com/2013/04/15/2827584/backstory-couple-develop-apps.html#storylink=cpy

New Yorkers Fearing Impact of Cuts

SYRACUSE, N.Y. – Stephanie Silverman so wanted to meet Gov. Andrew Cuomo last year as he announced his plans for a Justice Center to protect developmentally disabled people like her.

Stephanie Silverman, right, meets
Gov. Cuomo last year.

“The way we treat people is really the judgment of who we are,” Cuomo said at the time.

Silverman, who is 45 and has Down syndrome, got her wish and shook the govenor’s hand.

“Oh, he wanted to be a good advocate,” said Stephanie’s mother, Harriet Silverman.

A year later, families like the Silvermans are questioning the priorities of Cuomo and other state leaders. The governor and the New York State Legislature just approved a new budget that includes using $420 million to pay for tax breaks for “The Tonight Show” and other films and televisions shows and the purchase of a luxury box at the Buffalo Bills’ stadium.

'They Are the Forgotten Bunch;' N.J. Teacher's Aide Claims Program Is Failing

TRENTON — It started as a transitional program, a way to teach special education students with developmental disabilities how to handle personal finances, find a job and live independently once they left school.

But in the last several years, the Trenton school district’s Life Skills program has gone tragically off the rails, one teacher’s aide is alleging.

Students mindlessly copy answers teachers have written in textbooks. No curriculum exists. The students, all high school age, sometimes color sheets of Disney characters in lieu of classwork. There’s no rhyme or reason as to who graduates or who stays on for another year.

Editorial: Where's the Support

Three months and one week into KanCare, Kansans can be cautiously hopeful that the massive Medicaid overhaul eventually will realize state leaders' goals without compromising people's health. But it's hard to believe that the Brownback administration, with the tacit approval of the Legislature, still intends to let the program take over long-term care for individuals with intellectual and developmental disabilities next year.

Autistic and On the Airwaves

The participants at Lifestyles for the Disabled do not exactly seem like naturals as radio personalities. 

There is Anthony Cossentino, 29, a huge “Jeopardy” fan who for years has been arriving at Lifestyles, a daytime occupational program on Staten Island for developmentally delayed adults in their 20s and 30s, every morning with a self-written question of the day, to pose to anyone who will listen.

App Aims for Faster Autism Diagnosis

Because of a shortage of specialists around the country, it can take as long as six months for parents who suspect their child might have autism to get confirmation and begin treatment.
To help with the problem, the Southwest Autism Research and Resource Center, a Phoenix-based autism research nonprofit, is developing a smartphone application that specialists would use to diagnose autism based on videos of children's behavior uploaded onto a website.

Impact of Cuts to NYS Providers May Be Less

As they say, it ain't over till the fat lady sings. Let's wait till it's in writing and we see more details.

STATEN ISLAND, N.Y. -- The providers serving thousands of Staten Islanders in group homes, day programs and other life-enriching activities have been reeling since the budget passed in Albany last month: The Office for People with Developmental Disabilities (OPWDD) was dealt a $90 million blow to its budget -- this on top of cuts for the two preceding years.

But Friday, the Developmental Disability community learned they could breathe a little easier.

Opinion: Autism Is Not a Disability

Op-Ed piece from The Baltimore Sun by John P. Hussman, an Ellicott City resident and director of the Hussman Foundation, has helped establish the Hussman Center for Adults with Autism at Towson University and the Hussman Institute for Human Genomics at the University of Miami. 

April is National Autism Awareness Month, which naturally raises the question: awareness of what?

As a parent of a 19-year old son with autism, if you had asked me that question years ago, I would have said things like, "Be aware that kids with autism can experience sensory overload" or "Be aware that creating teaching opportunities around an autistic child's interests can help him learn." Or, if I was meeting one of my son's teachers: "Be aware that if you leave that scented candle on your desk, it's going to have a perfect bite taken out of it within two minutes."

Independent Oversight Proposed for California Developmental Centers

SACRAMENTO -- The state’s influential legislative analyst is recommending that the California Legislature create an independent Office of Inspector General to monitor state developmental centers where police failed to properly investigate patient deaths, abuse, sexual assault and neglect.

Former Convent Gets a Second Life

It's not every day that a former convent is converted into a group home for aging individuals with developmental disabilities. But that's precisely what happened in Brooklyn. YAI is very fortunate to be in such a welcoming community with great neighbors. 


An old Bay Ridge convent has been given a new life — as a home for developmentally disabled seniors.

Sister Dolores Ferry greets Raymond,
a resident of the group home.

The nunnery which housed St. Anselm’s Catholic school teachers was rebuilt into comfortable quarters for 16 aging special-needs residents with lots of room to maneuver wheelchairs and walkers.“It’s moving to see how beautifully it was redone,” said Sister Dolores Ferry, who returned Tuesday to visit the 83rd St. property where she lived for 24 years and which the parish is renting to the nonprofit YAI.

Editorial: Ongoing Concern

Leaders of organizations that advocate for people who have developmental disabilities may have won the battle in the Kansas Senate this session, but it’s certain that the war is not over.Senate Majority Leader Terry Bruce, R-Hutchinson, stressed as much when he said he has no plans for the Senate to take up the Senate substitute for House Bill 2155 that would limit services a Community Developmental Disability Organization (CDDO) could provide. The issues the bill was attempting to address still need to be faced, he warned.Yes indeed. And the assistance provided to thousands of Kansans remains to be determined.

Shakespeare and Autism

Researchers at Ohio State University Wexner Medical Center’s Nisonger Center are working with a group of middle school students in Columbus to see if Shakespeare’s plays can help children with

Robin Post of  Ohio State works 
with elementary school children.

autism spectrum disorders make gains in communication and in understanding and expressing emotions.

Latino Families Brace for Future of Their Young Adult Children with Autism

Kudos to NBC Latino for exploring this topic and its impact on families. Be sure to watch the video.

In a recent study published online in Pediatrics, researchers found that more than half of young adults with autism had no job or schooling within two years of graduating high school. Are America’s Hispanic families and communities prepared to help serve this generation?As part of a special project with Telemundo, NBCLatino.com hopes to explore this topic more deeply by talking with families who are living with these challenges.
We begin with the story of southern California’s Ana DaSilva and her family of 5.  Eighteen-year-old Andy DaSilva has autism and is about to graduate high school.  Anna is worried about Andy’s transition into college.  He wants to become a  chef or maybe an animator someday.

Siblings Tackle Life, Fun, in Tandem

BELLEFONTAINE, Ohio — The tandem swing goes so high it requires harnesses and a hoist, plus safety helmets and nerve. More than a few of the would-be riders looked up — 34 feet up, to be exact — and balked. 

Steve Meyer, 18, left, yells with
excitement as he begins a tandem
swing ride at Camp Willson with
 his sister Susan Meyer, 20.

Barb Sapharas listened to the coaching that ensued and smiled. Each set of swing partners were siblings, one with a lifelong disability and one without, ready again to laugh and love each other through something scary. 

Voters Consider New Tax To Aid People With Disabilities in Illinois County

From the Chicago Tribune:

Advocates for the disabled in McHenry County, Illinois,  are pushing for the passage Tuesday of a ballot initiative that would create a new property tax to help the estimated 5,000 people in the county with Down syndrome, autism and other developmental and intellectual disabilities.

The vote comes after years of cuts in state funding, but also as citizens have grown increasingly vocal about opposing new taxes. The proposal highlights a growing debate over what role local taxes should play in funding services that have traditionally been state and federal responsibilities.

Those who live and work with people with disabilities tell a common tale: As funding has dwindled, the need has increased. People with Down syndrome, for instance, are living longer than they used to. And as more people are diagnosed with autism spectrum disorders, they come out of school needing help with working, socializing and living independently.

Teen Couple Humiliated at Movie Theater Plan New Date Courtesy of Phillies

OK, even as a Mets fan, I have to post this and tip my cap to Philadelphia Phillies and their fans.

What first seemed like a humiliating date night for a teenage couple has set off a flood of support larger than even FOX 29 expected.

On Wednesday night, we introduced you to 17-year-old Annarose and 18-year-old Stephan. Both live with Down Syndrome and both are inseparable.

This past weekend, Stephan planned to take Annarose to an AMC movie theater in Marlton, New Jersey. The theater had assigned seating and the couple accidentally sat in the wrong row.

A movie theater worker told them to move to different seats that were separate from each other.

N.J. Prepares for More Group Homes

Kelly is the very embodiment of one of the biggest issues confronting New Jersey as it revolutionizes the way it cares for the state’s most vulnerable residents.

Christiana Sarfo of Arc of Morris County
 lifting resident Kelly from her bed
 at a Parsippany group home

But she doesn’t know anything about that. Like her five housemates at a group home run by the Arc of Morris County, she suffers from a range of severe physical and intellectual disabilities.

Your first impression when you walk into her room is that the occupant is a small child.

Child Abuse on Rise in Arizona

FLAGSTAFF, Ariz. -- Unrelated adults have more often been placed in childcare roles lately, and they are often the prime suspects in child-abuse cases here.

This was one finding by Susann Clinton, a nurse practitioner who interviews and collects evidence on behalf of abused children at Flagstaff Medical Center.

Children with developmental disabilities (requiring extra care) face more severe forms of physical abuse than other children, and girls face sexual abuse from male non-relatives more often than boys, Clinton said Friday.

Non-relatives providing childcare are accounting for the bulk of child-abuse cases here, said another health worker who reviews child fatalities as head of a Coconino County team attempting to prevent child deaths.

'I Am 1 in 50'

One in 50 school-age children in America has autism, according to the Centers for Disease Control and Prevention. But to the families affected, autism is not a number. It's a son, daughter, or sibling. It's an intense love of Spider-Man and the Weather Channel. It's frustration, despair, joy and amazement—all in 24 hours. These 50 brave moms, dads and kids take us inside life on the spectrum, and show us what autism truly looks like.

A Message to Arizona Governor and Legislators: 'We Are In Your Community'

A guest column from azcentral.com by Mark Jacoby, executive director of Gompers Habilitation Center and chairman of the Arizona Association of Providers for People with Disabilities.

Gov. Jan Brewer, Arizona legislators: Are you listening?

A provider of developmental-disability services in Vail has been forced to discontinue providing respite services, leaving the community with no one to turn to. A Phoenix provider has closed six group homes. Children with autism have to endure long waiting lists in order to receive critical behavioral treatments. A children’s program in Kingman closed. A Phoenix provider closed a dental center that exclusively served individuals with disabilities. Services for children with developmental disabilities age birth to 3 have closed all across Arizona.

Growing Up Autistic: My Story

Editor's note: Trevor Pacelli was diagnosed with autism at age 5 and has had to deal with many of life's complexities in an entirely different light. Now 20, Pacelli attends college and has written a book. "Six-Word Lessons on Growing Up Autistic" was published in May 2012 and talks about the daily struggles of living with autism and raising an autistic child. Pacelli lives outside Seattle.

(CNN) -- Growing up as an autistic has never been easy.

Trevor Pacelli

At 5, I was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified, or PDD-NOS, one of the five autism spectrum disorders. Those with PDD-NOS have difficulties in areas of social interaction and communication.

DOJ Backs Suit Challenging Oregon's Employment Services

A lawsuit filed against Gov. John Kitzhaber challenging Oregon's employment services system for persons with developmental disabilities is getting support from the federal government.

Oregon Gov. John Kitzhaber

The Department of Justice on Monday announced it has filed an action against Kitzhaber, the director of the Oregon Department of Human Services, the Administrator of the Office of Development Disability Services and the administrator of the Office of Vocational Rehabilitation Services, in support of the class action lawsuit Lane v. Kitzhaber.

Feds Backed Cuomo Medicaid Cuts

The federal government approved a deal with the Cuomo administration that dramatically slashes Medicaid payments to New York for services provided to developmentally disabled people.

Under the restructuring, Medicaid payments will fall from more than $5,100 to $1,200 per resident per day at centers that serve the developmentally disabled. The new rate comes on the heels of a scathing report by the House Committee on Oversight and Government that charged New York overbilled Medicaid for these services by $15 billion over 20 years.

'I Could Let this Consume Me or I Could Do What I Needed to Help My Son'

ORMOND BEACH, Fla.— Like most twin brothers, Joseph and Thomas Davis shared similar developmental milestones. They cooed and smiled, crawled and walked during their first few months of life.

Kathy Davis, 46, and her 4-year-old
twins, Joseph, left, and Thomas.

But when it came time to speak, 18-month-old Joseph was silent while his brother's vocabulary grew. When a hearing test came back normal, a doctor recommended that the twins' parents Kathy and Scott Davis test their son for autism.

Their worst fears were confirmed.

New York ARCs Bracing for Cuts

If you work for one of the 49 organizations within the New York ARC network, the state budget adopted last week will affect your job. And it could result in the freezing or cutting of salaries of ARC executives, many of whom are compensated beyond Gov. Andrew Cuomo's comfort level.
Indeed, several executives of ARCs are paid well above the $199,000 threshold Cuomo has set under restrictions that take effect in July, according to new regulations posted on the Division of Criminal Justice Services website a few days before the budget was passed. Many more are paid a salary above the $136,000 earned by Office for People With Developmental Disabilities Commissioner Courtney Burke.