Sunday, September 30, 2012

Over 3,000 in Alabama Waiting for Services

Kelly Ware with her cat.
MONTGOMERY, Ala. -- Anna Claire Statum loves her cats, Kitty and Smoky, the television station Nick Jr. and giving her mother "I want" demands such as "I want Coca-Cola," and then "I want ice water," after her request for sugary soda gets turned down.
But at 26, Stanton, who was born with profound developmental disabilities because of a recessive gene, can't live independently. Her parents, Carl and Susan, are in their mid-sixties and worry about what will happen to their daughter as they age. They'd also like her to have a place she could go during the day "where recreational activities are encouraged, to have some company."

In Georgia, a Bumpy Journey to a New Life

Wally Burns moved into a new group
home in May.
MILLEDGEVILLE, Ga. — On his last day in the state hospital, Wally Burns pulled on a new pair of plaid shorts and a neatly pressed polo shirt. He savored a final meal of eggs and grits, apple juice and milk, toast and a sweet doughnut stick.
You have a new home now,” his attendant told him, reminding him of the big move only hours away. “We hope you’ll like it.”

Saturday, September 29, 2012

Autism's Impact on Family Dynamics

The Coconis family -- Reed, 8; Sam, 9;
Chad; Costa, 11; and Shannon -- play a
game together.
SOMERSET, Ohio -- It's a challenge to raise a family in today's world, but those dealing with autism have additional hurdles face.
"What's often overlooked is the impact it has on everybody," said Shannon Coconis, National Autism Association of Southeast Ohio president and the mother of an autistic child. "Divorce rates are high in autism families, and it's tough on the siblings. We're not perfect, but (husband) Chad and I love each other, and our

Friday, September 28, 2012

Editorial: Overhaul New York's Special Education for Preschoolers

From The New York Times.

New York State clearly needs to strengthen oversight of the fraud-riddled program that spends $2 billion a year on special education services for preschool children with learning or other disabilities. The State Education Department got off to a good start this month when it issued a preliminary reform proposal.

An Eagle Scout Advances with Assist From Special Needs Troop


Rick Newell at the start of a
recent meeting.
 DENVER  -- A legion of supporters and a troop for special-needs boys allowed 15-year-old Ricky Newell to beat the odds and earn the rank of Eagle Scout. Newell had dropped out of scouts twice before, but in 2006, he joined Troop 5280, then a brand-new troop for kids with disabilities.
After six months, he joined the more traditional Troop 870 and hasn't looked back.
Earlier this month, he was presented his Eagle Scout medal, placing him among fewer than 5 percent of scouts who earn the organization's highest honor.

Tara's Law to Provide More Protections Advances


TRENTON – Legislation to create more stringent oversight of community care facilities servicing the developmentally disabled and provide a clear methodology for investigating potential instances of abuse continues advancing.
The measure (A-2573) is named “Tara’s Law,” in memory of 28-year-old Tara O’Leary, a developmentally disabled woman who had been residing in a licensed community care residence in the state. Over a 2.5-year period, she lost a dangerous amount of weight, failed to attend the majority of her day programs and was finally admitted to a local hospital, weighing only 48 pounds and suffering from dehydration, malnutrition and bedsores. When, despite efforts of the hospital staff, O’Leary’s condition did not improve, she was disconnected from life support and died.

Affordable Special Needs Housing OK'd in N.J.

Like all parents, Ellen LaFurn and Victor Calderin would do anything for their children.
Unlike most parents, they have to help them navigate a dizzying and overwhelming world that limits their job opportunities, virtually eliminates their social life and extinguishes the hope for a completely normal life.
LaFurn's 28-year-old daughter Gina and Calderin's 22-year-old son Jason both fall on the high-functioning end of the autistic spectrum.

Study: Half of Intellectual Disability Caused By Random, Not Inherited, Genetic Mutations

BERLIN -- More than half the cases of severe intellectual disability caused by genetic defects are the result of random mutations, not inherited mutations passed down from parents, a new study suggests.
The findings of the small-scale European study give hope to parents of children born with a severe intellectual disabilities who are worried about having another baby with the same condition, said Anita Rauch, chair of the Institute of Medical Genetics in Zurich who was one of the study's lead authors.

Autism Event Pegged to U.N. Raises Awareness

NEW YORK, N.Y. -- A milestone for 16-year-old Jaden Lake, who has autism, is sometimes as basic as a kiss.
Lake and his wife, Debi, say it's often the small victories that count most when raising the eldest of their two children.

Thursday, September 27, 2012

Young Autistic Aduts Seek White-Collar Careers for the First Time

A few weeks ago, Matthew Koenig, 24, was doing data entry for below minimum wage at a supervised employment center for people with disabilities in St. Paul, Minn.
Koenig, who has autism, was happy to have a job in a tough economy, but soon realized the workplace wasn't well suited to him. His co-workers "had too broad of a range of [disabilities]," he said. "Some people had really serious problems."
Moreover, employees were graded using "a time study to measure efficiency," he said, "but the nature of my disability means I lack certain kinds of motor skills, so I can't type as quickly as other people." 

New Medicaid Rules Threaten North Carolina Group Home Budgets

“I am counting on the fact that there’s going to be a fix, somehow, some way,” said Michael Maybee, director of Watauga Opportunities. Among other services, the nonprofit agency operates two six-person group homes for adults with developmental disabilities.

Campaigns to Address Disability Issues

From Huffington Post, an item by Liane Kupferberg Carter, a columnist for Autism After 16.

Remember that saying from the 1970s, that the personal is political?
As the parent of an autistic 20-year-old son, I know what my own family is struggling with. The need for employment. Housing. Health care. Insurance. Long-term community-based services and supports. Education. Transportation. Research. Improving the quality of life for autistic children and adults is my top priority.

Wednesday, September 26, 2012

Programs Help Autistic Students in College

Kevin Rinaldi speaks with a fellow
classmate at California
Lutheran University.

THOUSAND OAKS, Calif. -- Kevin Rinaldi was so silent as a child that his mother studied sign language in case he never talked.
She didn't expect he would ever go to college. But the boy who was diagnosed with autism at 3 and didn't speak in sentences until he was 6 earned As and Bs as a freshman last year at California Lutheran University. He edged into the social life at the Thousand Oaks university, too, living with roommates and joining a club.


Parents of Autistic Children Protest New PA. Co-Pays for Care

HARRISBURG - A move by the state Department of Public Welfare to require co-payments from families now receiving free services for children with autism and related disorders has touched off protests from parents who say they cannot afford hundreds of dollars a month for the specialized care.

At a rally Tuesday, several dozen parents, joined by Democratic legislators, objected to a decision to begin charging co-pays for about 48,000 children who now receive the care.

Eliza Schaaf to Return to College

AHS student with Down syndrome was forced to withdraw from SOU class

Nearly two years after Eliza Schaaf was asked to stop attending a course at Southern Oregon University, she's finally heading back to class.

The 22-year-old Ashland High School grad, who has Down syndrome, is in her first week of classes as a student at Highline Community College in Des Moines, Wash.

What They Don't Teach (Enough) in Med School: Disability Awareness

Medical students study a lot, but one thing frequently missing from their training is how to interact with patients who have intellectual or developmental disabilities.

A proven program to address that shortcoming, begun at Boston University School of Medicine, is expanding to other area schools. Operation House Call sends medical students to the homes of families with special-needs children, to get acquainted in a non-clinical setting.

Tuesday, September 25, 2012

New Tests Show Progress in Identifying Genetic Roots of Autism

One of the most agonizing questions that parents of children with autism ask is—why? Now, a growing number of genetic tests are providing some answers.
Scientists say that roughly 20 percent of autism cases can be linked to known genetic abnormalities, and many more may be discovered.
Pinpointing a genetic explanation can help predict whether siblings are likely to have the disorder—and even point to new, targeted treatments. Last week, for example, researchers reported that an experimental drug, arbaclofen, reduced social withdrawal and challenging behaviors in children and adults with Fragile X syndrome, the single most common genetic cause of autism.

Province Provides Housing for Autistic Teen

Miles Kirsh
There's hope in Canada.

Miles Kirsh will not be homeless next week.
The provincial ombudsman’s office has assured Donna Kirsh that Ontario’s social services ministry is working to find a way to keep her 19-year-old autistic son in respite care until funding for permanent group home care is available.

Monday, September 24, 2012

Is the Autism Label Stuck?

Amazing post by Amalia Starr of Autisable.

Getting a diagnosis and a name for your child’s condition is extremely important. It will help you understand why your children do what they do and it can often point you in the right direction for assistance. At the same time, we must remember that our children are not their disorder or condition. They need to be kept separate.

Sometimes labeling hinders us. We think that our children might not be able to do things other “typical” children can do and that type of thinking can keep your children from succeeding.



Autistic Girl, 10, Memorizes Complex Ballet

Clara Bergs is a ten-year-old with a passion for dance, yet she faces far more challenges than the average budding ballerina. Bergs was diagnosed with autism and DiGeorge syndrome at birth, meaning she faces great physical and learning challenges, has difficulty connecting to others, and often dwells in a world all her own.
Clara's parents noticed her repeating a certain dance around the house and after a while realized she had completely memorized Swanhilde's masquerade in "Coppélia," clearly no simple task.

Research Lacking on Drugs for Older Children with Autism, According to Study

More and more children are growing up with autism, and although many treatments and interventions are now available, clinical studies on the use of medications in teens and young adults are lacking, according to new research.
"The majority of (older) individuals with autism spectrum disorders appear to be taking medications that we have very little evidence for," said the study's lead author, Dr. Jeremy Veenstra-VanderWeele, medical director of the Treatment and Research Institute for Autism Spectrum Disorders at the Vanderbilt Brain Institute in Nashville, Tenn.

Preschool Kids Struggle to Get Special Education Services Under New Education Department Policy

Alexandra Berger and her triplets.
NEW YORK, N.Y. -- Alexandra Berger thought she had done everything right.
The Park Slope mother of 3-year-old triplets, two of whom have developmental delays, spent the spring and summer researching therapists for her tots and lining up a fall schedule of sessions to help them catch up to their peers.
But at the end of August, just one week before the city-funded therapies were scheduled to start, Berger got a call saying the Department of Education had denied the contracts.

Sunday, September 23, 2012

Students with Asperger's Thrive in College

FORT LAUDERDALE, Fla. -- When their son was diagnosed with Asperger syndrome at age 3, Fort Lauderdale residents Maria and Lorenzo Burga feared he would be unable to speak.
Today, however, Renzo Burga is an honors student at Broward College, where he is studying computer science and maintaining a 4.0 grade-point average. He wants to ultimately work for a high-tech company such as Apple, Microsoft or Google.

Lawsuit Claims State Cuts to Family Care that Hurt Services are Illegal

PARDEEVILLE — For a quarter of his life, Jason Neuman has been the guardian of his dad, Donald, who has a traumatic brain injury.
Donald Neuman, 61, likes the adult group home in Pardeeville where he lives, his son said, but in the next few weeks, he might be forced to leave.

California Unprepared for Wave of Autistic Adults

JP Samuel, alongside his ventriloquism
puppet Skully, bursts out in song
with a karaoke computer
program at his home in Camarillo.

Editor's note: A little over a decade ago, California officials raised an alarm about the growing number of children being diagnosed with autism. The Star examined the struggles of several Ventura County children who were part of that surge in 2000. In this series, we look at what has happened to them as they've come of age.

CAMARILLO, Calif. -- Dressed in a black tuxedo and dancing with a pretty blonde partner, JP Samuel went to a prom for special-needs teenagers this year. It was more than his mother could hope for when he was a baby. Her autistic son didn't coo, couldn't stand to be hugged, screamed with night terrors.
Over the years, though, he's learned to talk, read and make friends.
"I'm just tickled pink at where we are," said his mother, Kris Samuel of Camarillo. "I'll take it."

Severely Autistic Teen May Face Homelessness

Horrific story from Canada.

Miles Kirsh is a 19-year-old Thornhill teen with autism who functions at the level of a 3-year-old.
Miles Kirsh
He is largely non-verbal and responds to stressful situations by shrieking, biting himself, slapping surfaces, ripping his clothing and occasionally destroying property.
Since Sept. 5, he has been living in a group home for developmentally disabled adults near Barrie. But on Oct. 1, emergency community funding to cover his $400-per-day care runs out.
His frantic parents, who have separated due to the pressures of raising their severely disabled son, sold the family home at the end of August and are no longer able to care for him.
They say one provincial bureaucrat told them they could drop off Miles at a shelter.

Saturday, September 22, 2012

Autistic Adults Have Unreliable Neural Repsonses

A new study, published in the journal Neuron, reveals that autistic adults have unreliable neural sensory responses to visual, auditory and somatosensory (touch) stimuli
This poor response appears to be a basic characteristic of autism.
Up until now research on what causes atypical behaviors in autism has focused primarily on specific brain regions without necessarily tracing back to the brain’s fundamental signaling abilities.

Friday, September 21, 2012

Dogs Bring 'Heeling' Touch to Autistic Children and Families

For families raising autistic kids, the littlest things can be the hardest, making a trip to the grocery store or a walk around the neighborhood nearly impossible.
Five new families in that position are gaining valuable new companions to help them on the path to a more stable home life this week — specially trained dogs who can stop autistic kids from roaming or bolting into traffic, the worst-case scenario for many families living with autism.

Autistic Boy, 11, Handcuffed on School Bus

BALTIMORE -- Howard County school officials are investigating an incident involving an 11-year-old autistic boy who was handcuffed by police officers on a school bus after he allegedly bit several adults and students.
The child, who does not speak and has limited social skills, according to his mother, was being transported from the Kennedy Krieger Institute in Baltimore, which accepts students whose severe learning disabilities require specialized education not provided by public school systems.

Educating the Local and State Candidates


ST. CHARLES, Ill. -- Karen Belcher has a clear idea of what candidates seeking votes in the Nov. 6 election should do.Belcher, a special education advocate from Big Rock, had a teenage daughter who died. Joanna Belcher, 17, was mobile and verbal but had special needs like schizophrenia and autism.“Even though my daughter is no longer with us, the issues didn’t die with her,” Karen Belcher said. “… We need them to be able to represent us at the state and tell the governor and all of the representatives and senators that are still there to say — you cannot cut the children, adolescents and adults who already have the least services.”

Calling for End to Transplant Discrimination


In the wake of two high-profile cases of people with disabilities allegedly denied organ transplants due to their special needs, advocates are urging federal officials to step in.

Putting People with Disabilities to Work


EL CAJON, Calif. -- There's a San Diego program helping people with developmental disabilities gain a new sense of freedom and independence in the workplace. Research shows people with disabilities are consistently less likely to be working than their non-disabled counterparts.
Calvin Fry has Asperger's syndrome a form of autism. At 23, he's a ball of energy who works up to 28 hours a week at Vons in El Cajon. "5/21/11 is when I started," Fry said walking down the produce aisle. "I'm a janitor/cardboard clerk early in the mornings with the night crew," he said proudly. His supervisor says Fry is always on time with a great attitude. Fry says he would be sitting at home watching TV if it wasn't for TMI, or Toward Maximum Independence.

Autistic Boys' Parents Blame Schools for Behavior Issues

DAYTONA BEACH — Parents of two kindergarteners with autism have filed complaints charging Volusia school officials failed to follow federal law to address the boys' behavior problems.
"Essentially, Volusia County public schools are discriminating against my clients based upon their disabilities," said Jamison Jessup of Deltona, who's executive director of MyChildWins.com and is serving as the children's advocate in both cases.
Volusia's exceptional student education director, Barbara Bush, denied the accusation and said school officials were in the process of addressing the parents' concerns when the complaints were filed with the district.

Police Department Helps Volunteer Live Dream

HIGH POINT, N.C. -- This is a story that will really touch your heart.  It teaches you never to give up and to be thankful for every opportunity you have.Tracey McCain found this inspiring young man living right here in our community.  Javonta Riddick is 18, has Autism and wants to be a police officer.  He's so passionate about it, High Point police couldn't turn him away.  Now Javonta is a full-fledged volunteer and has he puts it, he's living the dream.

Study Finds Video Games Are Therapeutic


Video games are often criticized as part of a sedentary lifestyle that contributes to obesity, but a new study from the University of Utah highlights the growing uses of games as therapeutic tools.
The study, which was published in the September 19th issue of the journal Science Translational Medicine, examined clinical data on existing health-promoting video games and less active titles on the Wii, as well as Sony and Microsoft consoles. According to Dr. Carol Bruggers, the lead author of the "Patient-Empowerment Interactive Technologies" article and a pediatrics professor at the University of Utah, "A growing number of published studies show promise in effecting specific health-related behavioral changes and self-management of obesity, neurological disorders, cancer or asthma."

Thursday, September 20, 2012

'When I Run, I Feel Like I Can Do Anything'

On a chilly morning last October, Jesse Carrico wiped the sleep from beneath his sports goggles as he struggled to pin on his race bib. It was still three hours before he'd run his seven-mile leg of the 2011 Baltimore Marathon, and he was already nervous. But when the 20-year-old finally spotted his relay mate's matching royal blue singlet coming toward him, confidence had replaced worry. With no idea what to expect as he took off for the finish line, Carrico simply remembered something his coaches had said to him often: Trust your training. You can do this.
That training had begun in April 2011, when Carrico's coach, Andy Parsley, started preparing a group of four students at the St. Elizabeth School to run the Baltimore Marathon as a relay team. Parsley, the principal of the Baltimore school, which serves those with learning and physical disabilities, is himself an eight-time marathoner.
"I thought the coaches were pulling my leg when they told us we were running to the lake near our school," Carrico, now 21, says of an early practice. "I didn't know if I'd make it, but I did and was very proud of myself."

Autistic California Man Puts Knowledge of Sports to Use as San Pedro High School Announcer

Jamaal Street delivers
play-by-play for San Pedro
High School.
LOS ANGELES -- When Jamaal Street was diagnosed with autism as a toddler, the news dealt an emotional blow to his mother.
"There were a lot of tears, a lot of tears, but we prayed a lot," Street's mother Lydia Haley told CBS Los Angeles. "My faith is in God. We prayed a lot once we found out."
But Haley refused to allow the diagnosis to negatively impact her son's future. Today, Street, now 33, is putting his distinctive voice and encyclopedic knowledge of sports to good use as an announcer for games at San Pedro High School in Los Angeles.

Children with Autism & Interrealted Health Issues

COLUMBIA, Mo. -- One in 88 children has been diagnosed with an autism spectrum disorder (ASD) in the United States, according to the Centers for Disease Control and Prevention. A new study by a University of Missouri researcher found that many children with ASD also experience anxiety, chronic gastrointestinal (GI) problems and atypical sensory responses, which are heightened reactions to light, sound or particular textures. These problems appear to be highly related and can have significant effects on children’s daily lives, including their functioning at home and in school.

Study May Offer Peek Into Autistic Mind

"Imagine you have the experience that your world is completely unreliable," said New York University psychologist David Heeger. "Every time you look at something it looks slightly different, or every time you hear something you hear it slightly differently."
That's what the environment may be like for people with autism, based on a study that he and researchers in Pittsburgh and Israel published today in the journal Neuron.

Drug May Help Social Withdrawal in Autism

An experimental drug showed promising results in treating the key symptom of social withdrawal in people with Fragile X syndrome, the most common known inherited cause of autism with intellectual disability, according to a recent clinical trial.
The drug, known as arbaclofen or STX209, is a derivative of the FDA-approved drug, baclofen, which is primarily used to treat muscle spasticity in conditions like cerebral palsy and is being studied as a treatment for alcoholism and other addictions.

Educational Planning Tips for Autistic Children

A child with an autistic spectrum disorder does not intuitively understand the social world. Severely affected kids may have little apparent interest in people around them. Someone with mild impairment may be quite motivated socially, but lacks the skills to initiate or maintain social exchange or play. Regardless of whether the diagnosis is autism, Asperger's syndrome or pervasive developmental disorder (PDD)-nos, this difference in social development defines the disability.
Educational planning for children with autistic spectrum disorders is often complex and difficult to negotiate.

Court Order State to Release Documents

SACRAMENTO -- A state court Tuesday ordered the California Department of Public Health to disclose uncensored copies of dozens of patient abuse cases at institutions for the developmentally disabled.
The ruling came in a lawsuit filed by the Center for Investigative Reporting in Sacramento County Superior Court in January, seeking citations issued to developmental centers in Los Angeles, Orange, Sonoma, Riverside, Tulare and San Jose counties.

Read more here: http://www.sacbee.com/2012/09/18/4836468/court-orders-state-to-release.html#storylink=cpy

Wednesday, September 19, 2012

Texas Company Penalized for Paying Workers with Disabilities 41¢ an Hour

IOWA CITY, Iowa -- A Texas company that profited for decades by supplying mentally disabled workers to an Iowa turkey plant at wages of 41 cents per hour must pay the men $1.37 million in back wages, a federal judge ruled late Tuesday.
The judgment against Henry’s Turkey Service in Goldthwaite is the third of more than $1 million against the company after state authorities in 2009 shut down a dilapidated bunkhouse in rural Iowa where the men had lived since the 1970s.

For Celebrities, Opening Up on Health Issues Raisess Awareness

'Real Housewife' Jacqueline Laurita,
far right, has spoken publicly of
her 3-year-old son's autism.
On "The Real Housewives of New Jersey," Jacqueline Laurita shared about her struggles with fertility, and, later, her pregnancy – and the joyous birth of her beautiful son Nicholas.
Then, last month, Laurita opened up about something she’d withheld during the filming of Season 4, whose final episode airs this Sunday: Nicholas, now 3, is autistic.
"U have no idea how great it feels 2b able2discuss autism openly now," Laurita, of Franklin Lakes, tweeted, six days after making the announcement in the Aug. 22 edition of People. "U all give great advice and tips."

Promising Autism Research: But Far From Cure

The journal,Science, has an article entitled Shared Synaptic Pathophysiology in Syndromic and Nonsyndromic Rodent Models of Autism, which found a common bond between Fragile X and autism. What's more, they were able to "reverse" the autism-like symptoms, in mice. The article that drew my attention to this research was Neuronal Dysfunction Found In Autism can be Reversed, posted online at the Examiner. Imagine my surprise, and excitement, when I read that an effective cure for autism had been found! Of course, I checked my excitement and started to read the article.

Bullying Study Show What Parents Already Knew

A study published this month in the Archives of Pediatric & Adolescent Medicine shows that children with autism are more than four times as likely to be the victims of bullying than their typically developing siblings. The statistics confirm what many parents already knew: Children with autism spectrum disorders are particularly vulnerable to rejection from their peer group.
It’s no surprise that they are victimized more. Kids with autism often struggle with social interactions and language, making it challenging for them to connect with others, even when they want to.

After Convincing Performance, Priyanka Chopra to Become Ambassador for Autism

Priyanka Chopra
MUMBAI, India -- Priyanka Chopra's portrayal of an autistic person in the recently released Barfi! got her rave reviews. Her role also seems to have touched the lives and hearts of many. The Forum For Autism (FFA), a support group for parents of autistic kids in the city, has approached Priyanka to become the face of their organization. Impressed by her acting, they believe she is the perfect ambassador for their cause.

Editorial: Florida's Children Deserve Better

TAMPA, Fla. -- Call it official neglect. Florida is accused by the Obama administration and the parents of sick and disabled children of warehousing hundreds of those children in large nursing homes rather than helping them stay home with their families. Disabled children have a right to the support services that would allow them to live safely at home or in community settings. But the state has been fulfilling its duty for some children and not others, leaving it to the courts to set things right for the rest.

Tuesday, September 18, 2012

Garden and Nutrition Program Teaches Life Skills

Jesse Shaffer and
Jade Litchfield pick
cherry tomatoes.

A group of adults with developmental disabilities from Target Community and Educational Services, Inc., stood in a greenhouse picking cherry tomatoes, some popping a few tomatoes in their mouths to eat.
The rule is, they can eat them if they pick them,” said Terry Serio, a food supplement nutrition educator at the University of Maryland Extension, Carroll County Office.

Serio, along with her program assistant and volunteer Master Gardeners, work with groups like the one from Target in the Carroll Outdoor Research and Education Center at the Carroll County extension office.

New Eye Test Could Detect Autism Earlier

Think new parents are already obsessed with milestones? A new test for autism that could diagnose kids on the spectrum as young as 6 months could be the proverbial gamechanger for parents. On the other hand, the eye test could be drive parents absolutely bonkers.

Classroom Yoga Helps Autistic Children

Kids with autism can have symptoms, like being irritable, that interfere with their school day. In one study, a morning yoga session in class helped with some behaviors.
Kids did yoga as part of their morning routine for 16 weeks. After, their teachers said that they had less problem behaviors during the school day.
Bringing yoga into the morning routine may be a way to empower kids with autism.

Monday, September 17, 2012

Editorial: Airline Right or Wrong

American Airlines recently refused to allow a teen with Down syndrome to fly from Newark to Los Angeles with his parents because the pilot deemed him a safety risk. The teen's parents, Robert and Joan Vanderhorst, said they plan to sue the airline for discrimination under the Americans with Disabilities Act.
Although not all details of case are known at this point, the incident appears to be a troubling reminder of how precarious and subjective airline security remains 11 years after 9/11. Even so, the issue here wasn't terrorism, but an airline's subject determination and fuzzy explanation about why the child couldn't be allowed to fly.

Family Fights to Bring Autistic Girl to Australia

A British family with an 12-year-old autistic daughter is desperate to move to Australia after doctors and specialists said her condition would improve in the country. 

Niamh Pebbles Scott, who is also deaf, has spent more than one year in Australia over eight separate holidays to visit her two brothers and grandmother, who live in Queensland. On each trip, according to specialists and her family, Niamh's condition "hugely" improves due to the family support she receives and the outdoors-based lifestyle.

Her father Adrian Scott has tried over the past two years to get visas for the rest of the family to move to Australia, but both the initial application and an appeal have been denied solely because Niamh fails to meet the health requirement.

Regatta Offers Seafaring Experience to People with Disabilities


Multiple Seacoast boaters welcomed eager new crew members Sunday during the 21st annual Challenger's Cup Regatta, held by One Sky Community Services of Portsmouth and the Portsmouth Yacht Club. The event offers people who live with developmental disabilities an opportunity to work as crew members on seafaring boats.
"This is really the only chance that some of these people get to go on a boat all year," said Jesse Gage, chairman of One Sky Community Services. "Some have never been on a boat."

Saturday, September 15, 2012

Experts: Need to Change Outlook Toward Disability


 Interesting from The Times of India.

NAGPUR, India  -- A rich family from India took their child, who had some neurological problems that were resulting into certain disabilities, to London to get him operated. However, after the surgery the child refused to return because of the overwhelming acceptance among all sections of society there, which was lacking in India.
It may sound unfair to those who are working really hard back home to bring disabled people into the mainstream or fighting for their rights, but the truth remains that Indian society is still very non-receptive to these specially-abled persons as it cannot still integrate with them. We not only lack the right system which is disability friendly but also the teamwork needed among experts, society and government institutions to make disabled persons more inclusive in society and prevent disability at large.

Advocates Urge Probe of Tasers Use at Center

SANTA ROSA, Calif. — Advocates for the developmentally disabled Friday afternoon called for an investigation into reports 12 adults at the Sonoma Developmental Center near Sonoma were tortured with Tasers a year ago.
Members of The Arc of California, the Developmental Disability Council and the Parent Hospital Association for the Sonoma Developmental Center also urged Gov. Jerry Brown to sign five legislative bills that protect developmentally disabled persons from abuse and expedite reporting 

Willowbrook Exhibit Serves as Reminder: 'You'll Have to Repeat History If You Forget It'

It has been 45 years since an exposĂ© led to public outcry about the abysmal conditions at the former Willowbrook State School on Staten Island, and now an exhibit on the former school for developmentally disabled children is on display in the Port Authority Bus Terminal. 
 
Bernard Carabello was just three years old when he first entered the Willowbrook State School on Staten Island. He was 21 years old when he finally left what he recalls as the worst place on earth.
"I used to get beaten almost every other day," Carabello remembered.
Designed for 4,000 children, the state-supported institution was overcrowded and understaffed. Twenty five years ago this month, the facility was closed for good.

Friday, September 14, 2012

Dual-Eligible Market Creates Opportunities for Physican Practices

WASHINGTON, D.C. --  Physicians have new opportunities to partner with health plans to take advantage of the rapidly growing private market for beneficiaries who are eligible for both Medicare and Medicaid, according to a partner at a global management consulting firm.
“There’s been a tremendous interest and appetite around the so-called dual-eligibles population,” said Sanjay Saxena, MD, a partner in the North American health practice at Booz & Co. and co-author of a new Booz report (booz.com/media/uploads/BoozCo_Winning in_the_Medicaid_and_Duals_Markets.pdf).
Several years ago, discussions about changes in the private insurance market were all about health insurance exchanges, then about accountable care organizations, and “now it’s about the duals,” Dr. Saxena said.

Actors with Down Syndrome Raise Awareness

Lauren Potter, who plays Becky
Jackson on Glee, with Jordyn Orr
(Robin Sylvester) Gail Williamson
and Robin Trocki (Jean Sylvester).
When Gail Williamson was pregnant with her son Blair in 1979, there was no one on TV with Down syndrome to help make the diagnosis less scary.
Today, doctors tell parents that their babies will grow up and be like "Becky," a character on "Glee" who has Down syndrome -- and quite a bit of sass as she rocks a cheerleading uniform at the fictional William McKinley High School.
"It changes it for parents," said Williamson, the woman who connected "Glee" with Lauren Potter, the actress who plays Becky; Robin Trocki, the actress who played Sue Sylvester's big sister, Jean; and Jordyn Orr, the baby who made her "Glee" debut as Sue's daughter Thursday night. They all have Down syndrome.

Common Sense Lacking in School Lunch Denial

A New Jersey grammar school let a special needs student go hungry instead of contacting his parents over an unpaid bill, according to several reports. Despite an apology from the school district, the parents may now transfer the boy to a private school, according to Fox News.
John Robert Caravella, a 5-year-old kindergartner with autism, was denied a $2.30 meal by Cliffwood Elementary School in Matawan because his parents had yet to settle an $8 charge that was just a few days overdue, reports the Newark Star-Ledger.

Thursday, September 13, 2012

Kansas Helps Disabled Get to Work

TOPEKA, Kans. -- Much of the focus on growing Medicaid enrollment (up to 50.8 million, according to new Census figures) is on the people who can’t find work so they need Medicaid. But what about the people who need Medicaid so they can work?
That’s the population that Kansas policymakers had in mind when they created the WORK program in 2006. They’re mostly developmentally disabled adults who want to work, but require a little assistance around the house to stay independent. So the Kansas Medicaid office provides them with a cash allotment (averaging just under $1,700 per month) to pay for the help they need. WORK enrollees can hire an in-home aide or purchase other services themselves—or a state case worker will do the legwork for them.

Author of Bullying Study: 'It Puts a Fire In Me'

Paul Sterzing
BERKELEY, Calif. -- Paul Sterzing had barely moved into his office at UC Berkeley when the New York Times, the Washington Post, Reuters and CNN started calling. The newly hired assistant professor’s just-published study – showing nearly half of U.S. adolescents with autism spectrum disorder have been bullied at school – had propelled him into the media spotlight.
His first mistake was eyeing readers’ comments under the online news articles. “Duh, tell me something I didn’t know,” was a common theme. “Science provides a factual basis for beliefs and assumptions,” Sterzing says, shrugging his shoulders.
And just as many, if not more, commenters revealed they’d been bullied, too. Clearly, the study had touched a nerve.

An Alternative to the Traditional Job Market

Adam Dankner with one of his
vending machines.
TOWSON, Md. -- Though it's the first thing a person sees when entering Towson City Center from the garage, it's easy to ignore the building's healthy snack vending machine.
Aside from offering healthy alternatives to candy and chips, this new vending machine gives the Towson University Center for Adults with Autism one more way to service its target audience.
And the vending machine itself is owned and operated by one of its own.

Wednesday, September 12, 2012

Brain Injuries Cause Developmental Disabilities in Children

A healthy, typically developing child suffers an accident or injury that damages the brain. It’s a far too frequent occurrence. In the worst cases, damage to the brain can cause death. It may cause a lifelong disability for the child, including intellectual or cognitive impairments.
According to the Centers for Disease Control and Prevention, traumatic brain injuries are the leading cause of disability and death in children and adolescents in the U.S. Children ages birth to 4 and 15 to 19 have the highest rates of incidence. In the early years of life (about birth to 5), children’s brains are developing at their most rapid rate, and brain trauma can prevent a child from ever being able to develop the skills controlled by the portion of the brain that is damaged.

Yale Researchers Win NIH Grant to Pursue Autism Study in Girls

NEW HAVEN, Conn. -- Three researchers at the Yale School of Medicine learned last week that they will receive $15 million from the Nationnal Institute of Health (NIH) for autism research.
The researchers, all of whom are professors in the Child Study Center, found out on Sept. 4 that they had won the grant, called the “Autism Center of Excellence (ACE) program,” to research autism in females. The announcement was the culmination of an application process that began in the fall of 2011, and means that Yale will act as the primary institution in the five-year network grant, collaborating with researchers at Harvard, UCLA and the University of Washington.

Genetic Test to Predict Autism Developed

Australian scientists have developed a genetic test to predict autism spectrum disorder in children, which could provide a long-sought way for early detection and intervention, according to a study published on Wednesday.
About one in 150 children has autism, with symptoms ranging from social awkwardness and narrow interests to severe communication and intellectual disabilities, said researchers led by the University of Melbourne.

Tuesday, September 11, 2012

Finding Care for a Child with Special Needs Is a Time-Consuming Process

MOUNTVILLE, Pa. -- When friends ask Michelle and Jeff Janidlo to get together for dinner or come to a party the Mountville couple turns them down. It's not that they don't want to socialize it's because the Janidlos can't leave their son at home by himself or with a sitter. Connor Janidlo 13 has severe intellectual and development delays autism and seizure and movement disorders

See the World Through Eyes of Autistic Children

A young photographer hands in his
camera to have photos downloaded.
SYRACUSE, N.Y. Picture this: 26 children, ages 5 to 16, tramping around Onondaga Lake Park, sizing up the surroundings through the viewfinders of digital cameras and photographing anything or anybody that, well, needed to be photographed.
The kids, all decked out in yellow T-shirts donated by Logos Custom Embroidery, of East Syracuse, were participants in the Aug. 26 "World Through My Eyes 2012 Photo Walk."

Autism, Parenting and Feeling Judged

I saw a woman at the gym the other day that I really wanted to avoid.
I used to see her a lot when Matthew was small. It seemed she was always there when he was bolting away from me at the grocery store, the swimming pool, the park. She watched me as I tackled Matthew before he wandered into the street, and while I tried to defuse a big bad meltdown. She was always sitting right behind us in church while Matthew flapped and tapped and giggled. Her pale blue eyes followed us everywhere and her frown was constant.

Monday, September 10, 2012

Survey to Help Autistic Workers Find Meaningful Employment

We go abroad for this item. Anything to help individuals find meaningful work.

Do you have a loved one or know someone who has autism? If so, do take a survey that aims to help these individuals find gainful employment.
I've been supporting efforts by a Danish company, Specialisterne, which hires and trains people with high-functioning autism so they can acquire the relevant IT skills and eventually find meaningful employment.

Supplement May Treat Autism in Some

A widely-available nutritional supplement may be key to treating select cases of autism, according to a new study.
Researchers identified a specific gene mutation responsible for a small number of cases of autism accompanied by epilepsy and intellectual disability. Those with the gene mutation experienced a low level of certain amino acids known as branched chain amino acids or BCAAs.

Sunday, September 9, 2012

Day of Primping for Pre-Teens on Spectrum

Emily Lund straps on her shoes
before the final fashion show.
, Texas —Facing the day to day challenges of preteen years can be difficult for the average girl.
It's even more difficult for a girl who has Asperger syndrome.

Autistic Children Tackle Football Camp Fun

In honor of the NFL getting in full swing today, thought this would be appropriate.

Dakota Smallwood at football camp.
APPLETON, Wis. -- The  parents of children with autism are used to getting “the look” from other adults who judge them for their child’s behavior not knowing the cause.
But Saturday at the Autism Society of the Fox Valley’s annual Football Camp for Kids with Autism at Xavier High School, not one parent had to worry.

Why Does Florida Place Children with Disabilities in Nursing Homes?

TAMPA, Fla. -- The letter from the U.S. Department of Justice is probably the best place to start.
It suggests in a simple, unadorned way how Florida has abandoned its most vulnerable citizens. Over the course of 22 dispassionate pages, it makes a point-by-point case of many of the state's shortcomings in caring for children with extreme medical conditions.
It highlights how Florida's apparent inclination to herd helpless kids into geriatric nursing homes is not only a violation of federal law, but also leads to the unnecessary ruin of families and can be an impediment to developmental progress.

Saturday, September 8, 2012

Medicaid as a Middle-Class Entitlement

Eric Patashnik notices a key strategic move that former president Bill Clinton employed in his Democratic National Convention speech: He recast Medicaid as a program for the middle class, rather than for the welfare population.
A lot of folks don’t know it, but nearly two-thirds of Medicaid is spent on nursing home care for Medicare seniors who are eligible for Medicaid,” Clinton told the crowd. “A lot of that money is also spent to help people with disabilities, a lot of middle-class families whose kids have Down syndrome or autism or other severe conditions.”
Patashnik has previously done research that looked at Clinton’s Medicaid rhetoric, and he says this isn’t an isolated take: Clinton has put no small effort into recasting Medicaid as a program that serves the middle class. In 1995, when he faced off against House Republicans over a government shutdown, he regularly grouped Medicaid with Medicare, environment and education — government programs not tethered to income levels.

Up Close and Personal with the Spectrum

Great post by Hannah Cushing on Autism Support Network.

Three years ago, I was teaching in a charter school for students in recovery from drug and alcohol addictions. My campus was closing and I needed a new job. The first four years of my teaching career were spent working with addicts, gangsters, and wanna-be gangsters. This was exactly the population I had pictured myself working with, and I loved it. I had always been most drawn to the students that our society relegates to the fringes, the kids who fall through the cracks, unwanted, unnoticed or blamed for their inability to fit our expectations.
At the time, I had a connection within a new charter school for students on the Autism Spectrum going into its third year and was encouraged to apply. So I did. I applied, interviewed, and was eventually hired. Although there was a part of me that thought, “Hmmmm, this is not what I imagined for myself.” There was another part of me that said, “Doesn’t matter. This is where you are supposed to be.”

A Terrifying Way to Discipline Children

Interesting opinion piece in Sunday's edition of The New York Times by Bill Lichtenstein, an investigative journalist and filmmaker.

In my public school 40 years ago, teachers didn’t lay their hands on students for bad behavior. They sent them to the principal’s office. But in today’s often overcrowded and underfunded schools, where one in eight students receive help for special learning needs, the use of physical restraints and seclusion rooms has become a common way to maintain order.

It’s a dangerous development, as I know from my daughter’s experience. At the age of 5, she was kept in a seclusion room for up to an hour at a time over the course of three months, until we discovered what was happening. The trauma was severe.

Friday, September 7, 2012

A Rare, But Potentially Treatable Form of Autism

Researchers at the University of California, San Diego, have identified a rare, hereditary form of autism that may be treatable with nutritional supplements, a new study reports.
The scientists sequenced the genomes of six children with both autism and epilepsy from three Middle Eastern families — in each case, the children’s parents were first cousins — and found that they had mutations in a gene that normally prevents the breakdown of certain amino acids. The end result is that children had low levels of these proteins — known as branched chain amino acids — which the body doesn’t make on its own and must be gotten through food.

Voting Rights Disputed in Minnesota

This sounds so outrageous. Don't people realize that just because someone has a developmental disability doesn't mean they lose a constitutional right. These folks have the capacity to learn -- it's a matter of finding their learning style and taking small steps.

In Minnesota, a dispute is going on about whether individuals with disabilities who are under the care of a guardian should retain the right to vote. According to the Star Tribune, Minnesotans whose affairs are controlled by guardianships do have the legal right to vote, unless a judge takes this away.

DOJ Finds Florida Violates Olmstead

On Tuesday, the Civil Rights Division of the United States Department of Justice issued this findings letter to the State of Florida.  Here's the key intro paragraph:
Our review of the State’s system reveals that the State fails to meet its obligations under Title II of the ADA and its implementing regulations, 28 C.F.R. Part 35, by unnecessarily institutionalizing hundreds of children with disabilities in nursing facilities. Many children entering nursing facilities in the State are unnecessarily separated from their families and communities for years. With adequate services and supports, these children could live at home with their families or in other more integrated community settings. The State’s policies and practices also place numerous other children who have medically complex or medically fragile conditions at risk of placement in nursing facilities and other institutional settings.

Thursday, September 6, 2012

Why Autistic Kids Make Easy Targets for Bullies

A new study finds that children with autism spectrum disorders are bullied far more often than their typically developing peers — nearly five times as often — but parents of autistic kids think the rate is even higher than that.
In the study, about 46% of autistic children in middle and high school told their parents they were victimized at school within the previous year, compared with just over 10% of children in the general population. Calling it a “profound public health problem,” lead author Paul Sterzing of Washington University in St. Louis told the New York Times that the “rate of bullying and victimization among these adolescents is alarmingly high.”
Many people with autism have trouble recognizing social cues, which makes them awkward around others. They also often engage in repetitive behaviors and tend to be hypersensitive to environmental stimuli, all of which makes kids with the disorder ripe targets for bullies who home in on difference and enjoy aggravating their victims. About a third of autism cases are severely disabling — those affected may suffer from low IQ and be unable to talk — but most autistic people have average or high intelligence and many can function well, if their social and sensory issues are appropriately addressed.

The Arkansas Innovation

Mention medical innovation, and you might think of the biotech corridor around Boston, or the profusion of companies developing wireless medical technologies in San Diego. But one of the most important hotbeds of new approaches to medicine is … you didn’t guess it: Arkansas.
The state has a vision for changing the way Arkansans pay for health care. It is moving toward ending “fee-for-service” payments, in which each procedure a patient undergoes for a single medical condition is billed separately. Instead, the costs of all the hospitalizations, office visits, tests and treatments will be rolled into one “episode-based” or “bundled” payment. “In three to five years,” John M. Selig, the head of Arkansas’s Department of Human Services, told me, “we aspire to have 90 to 95 percent of all our medical expenditures off fee-for-service.”

Wednesday, September 5, 2012

Poor Sleep Among Preschoolers Linked to Delays

New research suggests that sleep problems early in life may boost the risk of developmental disabilities by the age of 8.
Researchers found that kids who suffered from problems like sleep apnea and snoring in their infant, toddler and preschool years were more likely to need special education services for conditions such as speech and behavioral problems a few years later.

Family: Airline Refused to Let Son with Down Syndrome Aboard Cross-Country Flight

The Vanderhorst family.
A California family says they were kicked off a cross-country American Airlines flight because their 16-year-old son has Down syndrome.
Joan and Robert Vanderhorst, of Bakersfield, Calif., said they intend to sue American over the "humiliating" incident at Newark Airport, in which they were told their special needs son posed a "flight risk."
"It's defamation," Robert Vanderhorst told the Daily News. "It's a violation of his civil rights and its defamation."

Self-Advocates Call for Retraction of Editorial in The Washington Times



SILVER SPRING, Md.-- Last week, shortly after The Washington Times Opinion section published an editorial arguing against affirmative action for individuals with disabilities seeking jobs at the Justice Department, The Autistic Self Advocacy Network (ASAN) put out a statement in response, published in the paper.
Since then, ASAN has followed up with a FAQ, posted on the ASAN website, about federal disability hiring efforts that refutes many of the arguments made in the editorial. This FAQ outlines the purposes and differences in the forms mentioned in the Times editorial and explains why this hiring process doesn't create an unqualified workforce.
Attorney General Eric Holder also responded to the editorial via a letter to the editor published in the Times on Monday.
Ari Ne'eman, president of ASAN, agreed to answer some questions about why the Times editorial was not just offensive, but factually inaccurate and should be retracted.

And the Latest Cause of Autism Is . . .

Post by Michael Yudell, an associate professor at Drexel University School of Public Health.


Autism, the lifelong neurodevelopmental disorder marked by a range of social and communication impairments, has seen its share of reckless claims about causes and cures.
From the belief that the emotional coldness of the so-called refrigerator mother caused her child’s autism to the fabricated science that vaccines were a trigger, such misbegotten ideas have, at best, offered only temporary hope to affected families, and, at worst, done incalculable harm to the public’s health. Because scientists still know so little about autism’s causes – almost certainly a complex combination of multiple factors – it should come as no surprise that claims based loosely or not at all on science continue to attract public attention.

Tuesday, September 4, 2012

App On iPod Touch Helps Autistic Adults Work More Efficiently

With difficulties related to behavior, communication, cognition, and sensory processing, people with autism spectrum disorder (ASD) have a hard time not only finding a job, but keeping the job as well. In the United States, just 15% of adults struggling with ASD are getting paid for some type of work. However, according to new research, people with the disorder are able to work more efficiently with the task management and organizational features on personal digital assistants (PDAs).

The research consisted of case studies that demonstrated the use of Apple® iPod touch® PDAs as vocational supports, which was published in the Journal of Vocational Rehabilitation.

Autism's Impact, Good and Bad, on Siblings

Ranit Mishori is a family physician and faculty member in the Department of Family Medicine at Georgetown University School of Medicine.

Ranit, top, and her brother Dror.
One of the least fun moments I recall from my years of growing up with an autistic brother was when he bit me on the cheek — just in time for my class photo. I was 12 and he was 11. I went into school with visible bite marks, and when they sat me in the chair for my solo shot, I told them that the cat had done it.
That’s one of the bad stories. As for a good one . . . um, to be honest, I have a hard time coming up with much.

California Pilot Offers Caveats For Moving ‘Dual Eligibles’ to Managed Care

As federal officials evaluate state proposals to move millions of the nation’s poorest and sickest individuals into managed care plans, they might consider a recent report from the California HealthCare Foundation.
The report analyzed California’s year-long transition of 240,000 low-income seniors and people with disabilities from fee-for-service plans into managed care as part of a federally approved demonstration project. Beneficiaries had to pick a managed care plan, or the state assigned one to them.
Despite efforts by state and health plan officials to smooth the transition, caregivers and others reported “the managed care system … was not prepared” to care for the population’s specific needs, which include complex cases involving mental illness, homelessness and developmental disabilities, the report said.

Editorial: Entitlement Changes, Misplaced Fear

The next time you hear someone say that Mitt Romney wants to “end Medicare as we know it,” consider what New Hampshire has done with Medicaid.
Last week, the federal government gave New Hampshire the final OK to switch to what is being called Medicaid managed care. The state has hired three companies to manage the coverage provided to the state’s Medicaid recipients. (Medicare is the subsidized government insurance program for seniors; Medicaid is for low-income and disabled individuals.)
With Washington’s approval last week, New Hampshire officially has ended Medicaid as we know it. The new managed care plan will end the state Medicaid program’s old fee-for-service model (in which patients go to the doctor and Medicaid pays for services individually) with a managed care plan in which the three contracted companies work with patients to more effectively spend health care dollars and provide better care.