Monday, December 31, 2012

Florida Rations Care for Vulnerable Children

This mother is suing the state to get
more nursing care for her daughter.

MIAMI -- In a drab, cramped conference room in Doral, a 45-year-old single mother is fighting with the state to secure in-home nursing care for her severely disabled daughter — while the 10-year-old fights for her life.
The mother sits across a wooden table from a state hearing officer who will decide whether health regulators were right to insist she get 18 hours each weekday of nursing care for her daughter, and fewer on the weekends, instead of the 24 hours her daughter’s pediatrician says are necessary. As her expert witness — a registered nurse — testifies, the woman’s daughter begins to cough, then vomit, then struggle for breath as her breathing tube becomes clogged. The hearing stops as the child’s mother and the nurse suction the girl’s tube, then clean, change and console her.
Generally lacking in such drama, hearings like the one that occurred Dec. 14 are held hundreds of times each year in Florida as the parents of severely disabled and medically fragile children battle state health administrators for nursing care and services for their children. Without such care, some of the youngsters will end up in nursing homes, something the 10-year-old’s mother is trying to avoid.

Teacher Helps Sandy Students Get Back on Feet

Teacher Kerri Harris and her
special education students.
MUNDELEIN, N.J. -- Kerri Harris, a Grayslake resident who teaches special education at Fremont Intermediate School in Mundelein, grew up in northern New Jersey, spending her summers at the Jersey Shore.
"When Hurricane Sandy made its way across the state (in late October) it destroyed so much of what I knew growing up. Luckily my friends and family were all OK, but there were so many who lost everything. There were children the same age as my students who had lost all sense of normalcy," said Harris, 25.
As the holiday season approached, Harris wanted to involve her students in a project to bring some comfort to New Jersey students who were impacted by the hurricane.

'Blood, Sweat and Tears:' The Life of a Fighter

Ian Cohen
PHILADELPHIA -- When Ian Cohen takes a punch to the face or a kick to the ribs, he’s not thinking about the pain.
He’s focused on his goal of becoming a mixed martial arts champion.

“As far back as I can remember, all I wanted to do is fight and be known as the toughest guy around,” he said.
Cohen, of North Wales, got a taste of his first scrap as a child when a fight broke out between him and another player during a T-ball game. “I remember him teasing me and then I was on top of him — just hitting the kid ... over and over," he said.
In high school, Cohen took out his aggression in bare-knuckle fistfights with friends for fun to see who was the toughest in the group. “The cool kids," he said, "were the ones who could throw down fists and fight. If you were a good fighter, you were popular.”
Cohen said he didn’t fight just to gain popularity, but also to protect others. Cohen, who is dyslexic and whose younger brother has autism, said he'd stick up for other students who were being bullied and often walk them to class.

Finding a Voice Through Music Therapy

Alex and works with
Anna Rennekamp.
Around the corner and down a hallway, the melody of "Feliz Navidad" is coming from a room with a two-way mirror.
Inside the room at Marywood University, Alex Conte strums a guitar. His therapist sings a verse of the popular Christmas song, and Alex, who has severe autism, sings a few of the words. His mom, sitting behind the glass, smiles.
For 19-year-old Alex, communication is found in music.

Friday, December 28, 2012

Caretakers Accused of Abusing Autistic Man

VISTA, Calif. -- The mother of a severely autistic man gave an emotional testimony Thursday at a hearing in Vista for two caregivers accused of abusing her son.
Police say 50-year-old Michael Garritson and 27-year-old Matthew McDuffie were supposed to be caring for 23-year-old Jamie Oakley, a man with severe autism who can't verbally communicate, has to wear a diaper and tends to injure himself when he's distressed.

Escaping Abuse, Autistic Uganda Boy Love and Support in L.A.

This is just an amazing story of how a community has helped just one child. Please watch and share link with others.

LOS ANGELES -- An 8-year-old autistic boy from Uganda traveled halfway around the world to spend his first Christmas with a local family.

Father and Son Share Spotlight in Production

Cast from "Annie:" From left,
Lisa Lapinski, Rick Woods,
Megan Kaye, Alison Walters
Short and Lee Woods
at the Open Door Theater
LUNENBURG, Mass. —  Fifteen years ago, 7-year-old Lee Woods and his mother and father went to see Disney on Ice's “Pocahantas.” He enjoyed the ice skating and the music until there were several loud explosions during the performance.
“He was out the door, and it took a lot of convincing to get him back in. It was not an autism-friendly performance,” said Lee's father, Rick Woods. “We had to be more selective and make sure there were no flashing lights or jarring things in any performances that we brought our son to.”
Years later, Mr. Woods saw a performance of “Big” at the Open Door Theater in Acton, a nonprofit community company that has been creating learning experiences for adults and children with special needs. He immediately knew that it would be the right fit for him and his son.

Brain-Injured Suffer Major Treatment Gap

Larry Boswell sat slumped in a wheelchair. His sweatpants were soiled, his T-shirt soaked in saliva. Flies buzzed around his head.
He was able to walk when he arrived at Illinois’ Cobden Rehabilitation and Nursing Center in 2008, government records show, something he can’t manage now. Speech therapy for the 57- year-old ended shortly after he was admitted, according to a lawyer trying to persuade Medicaid to transfer him.
While much of what Boswell says is incomprehensible, he managed a clear “no” when asked if he wanted to stay where he was. Cobden officials didn’t respond to telephone calls.
Boswell is one of nearly 244,000 brain-injured people consigned to nursing homes, according to data compiled by Bloomberg from U.S. Medicare and Medicaid statistics. He’s also on the front line in a national battle to get people like him out of facilities that aren’t equipped to care for them.

Thursday, December 27, 2012

A Florida Mom's Lonely Fight for Her Son

Bryan Pereira early in his life.
Tereza Pereira had cared for her woefully disabled son at home for most of his life. But she was in her 50s now, working two jobs to stay afloat, and state health administrators had repeatedly refused to pay for enough in-home nursing care to keep Bryan safe.
Pereira wanted her teenage son to live at a place called Baby House, a small group home for medically fragile children and young adults, with a long track record of treating children like Bryan as family. His care would have cost the state $300 per day there.
State health and disability administrators had a different plan: For $200 more each day, Bryan would live in a nursing home.

Andrew Solomon's 'Far From the Tree' Defies Conventional Wisdom

NEW YORK --  In his latest book "Far From the Tree," National Book Award winner Andrew Solomon turns the conventional wisdom that children are composites of their parents on its head, but says that is not a bad thing.
In the 700-page tome that explores the lives of families with children with conditions ranging from autism to deafness, Solomon says having a child is an act of production rather than reproduction that "abruptly catapults us into a permanent relationship with a stranger."
Though the book focuses on how families cope with more extreme forms of difference, Solomon, 49, believes that encountering unexpected traits in one's child is a universal part of parenthood.

Children on Autism Spectrum Appearing More on TV, But Is Media Getting it Right?

We stray to Canada for this post.

 TORONTO -- When "Parenthood" creator Jason Katims created the character Max Braverman — an intelligent, inscrutable, insect-obsessed youngster with Asperger's — he had in mind his own son, Sawyer, who was similarly diagnosed.
But while many are absorbed in the travails of the mop-topped Max on the generously open-hearted family drama, Katims' own teenaged son isn't among them.
"Everybody else in the family watches it but he doesn't," the Emmy Award winner said in a recent telephone interview, chuckling softly.

Social/Language Therapy: A Must

Kathie Harrington is a Speech Language Pathologist and a mother of a son on the autism spectrum. This is her blog post from's blog.

 Social skills aren't really so hard. Most children glean them during play and with appropriate guidance. No, social/pragmatic skills aren't hard at all, not unless you have ASD (as well as other mental disorders)

Wednesday, December 26, 2012

Opinion: It's Not About Cost; It's About Need

This letter is by Julie Cunningham, LICSW, who is the executive director of Families First Vermont. She sent it to Gov. Peter Shumlin, Sens. Patrick Leahy and Bernie Sanders, and Rep. Peter Welch. It pretty much could apply to any resident of any state who is concerned about cuts in services.
Dec. 17, 2012
Dear Gov. Shumlin,
Like you, I have been watching the tragedy in Newtown, Conn., and trying to comprehend how society has become completely unsafe for our children. I know that you have dedicated much time and energy to thinking about Vermont’s youth, and that you are invested in doing what you can to avoid a similar catastrophe in our state. Since our mental health and developmental services system have been undergoing major systems changes, I would like to share with you some of my thoughts about our shared concerns for our future.
As a community-based social worker for 25 years and for the past 13 years as director of a specialized service agency, I have worked closely with hundreds of families who are struggling with a child with a mental illness or a disability. I have noticed, over time, a steady decrease in services that are available for children — most notably in special education — but also in agency programming. Most families come into services at a crisis point. Prevention and outreach are non-existent. IEP and Coordinated Service Plan meetings are often uncomfortable, even excruciating, as service providers do not have enough funding to meet the needs presented. A child under the age of 19 who has a developmental disability can only receive a Medicaid (Developmental Services) waiver if there are repeated hospitalizations or the child is in DCF custody. We are a reactive system, and unfortunately our recent conversations about upcoming changes promise more of the same.

Georgia Legislature Looks to Cut Red Tape While Presevering Safety of Vulnerable Citizens

In Georgia, it takes more than 1,200 pages to catalog all the rules and regulations surrounding social services to the disabled, elderly and mentally ill. In other states, all those requirements take up as few as 40 pages.
If House Speaker David Ralston, R-Blue Ridge, succeeds, many of those regulations, spread across multiple agencies, could go away.
Ralston last year created the Red Tape Watch initiative with a goal of helping businesses and other organizations perform more efficiently while also protecting the interests of patients, consumers and the environment.

Tuesday, December 25, 2012

Laws of Physics Can't Trump the Bonds of Love

Jeffey Wright and his son, Adam,
in a scene from "Wright's Law."
Jeffrey Wright is well known around his high school in Louisville, Ky., for his antics as a physics teacher, which include exploding pumpkins, hovercraft and a scary experiment that involves a bed of nails, a cinder block and a sledgehammer.
But it is a simple lecture — one without props or fireballs — that leaves the greatest impression on his students each year. The talk is about Mr. Wright’s son and the meaning of life, love and family.
It has become an annual event at Louisville Male Traditional High School (now coed, despite its name), and it has been captured in a short documentary, “Wright’s Law,” which recently won a gold medal in multimedia in the national College Photographer of the Year competition, run by the University of Missouri.

Painter's Christmas Cards Brighten Holidays

Add caption
The artwork Larry Deskiewicz creates by moving the paintbrush affixed to a bicycle helmet on his head relaxes the muscles that his cerebral palsy makes tight and makes him feel good in general.
“It calms down my mind,” he said.
His collected works have been growing over the past two decades, since an occupational therapist figured out a way for him to paint without using his hands, which are too constricted to hold a brush.

The Power of Mom's Love

 Merry Christmas! A wonderfully powerful oped column from Joe Nocera in The New York Times this morning.

 It’s Christmas. The fiscal cliff is still approaching, guns remain a huge problem and the political paralysis in Washington isn’t abating. But, in the spirit of the season, let’s put aside our national troubles for this one day and talk about something a little more inspiring. Let’s talk about what a mother’s love can accomplish.

Monday, December 24, 2012

'They're Really Just 2 Guys Living In This House'

Brian Hough, left, and Mark Nibbler
relax on the couch in their house.
WALLA WALLA, Wash. — “At the end of the day, they’re really just two guys living in this house.”
With a broad smile and upturned palms, Jim Hough characterized the situation in the East Walla Walla home shared by his brother, Brian Hough, and Mark Nibbler.
They want to hang out in their boxers, be on their computers and eat chili mac. It’s not just disability guys doing that. You have laundry on the floor (to be sorted) and the category is ‘dirty.’ Sorting is unnecessary. They’re guys.”

Born Prematurely, He Overcomes the Odds

Sara Bollinger and
her son Everett
ARROYO GRANDE, Calif. -- Sara Bollinger remembers lying in the recovery room after her son’s birth on a cool day in October 2009.
Instead of weeping with joy, the tears streaming down her face were laced with fear and sadness. The new mom didn’t get to hold her baby just after his birth, nor did his father, Zac.
Instead, Everett Bollinger — born 15 weeks early, weighing just 1 pound, 13 ounces — was swept away to the neonatal intensive care unit.
“We all kept repeating, ‘He’s going to be OK,’” Sara Bollinger wrote in a letter to her son on his first birthday. “Kittens weigh more than you did. But packed into your little body was a will to survive and to thrive that is rarely seen in one so small.”

Read more here:

Sunday, December 23, 2012

Nets' Guard Blindsided by Son's Diagnosis

Brooklyn Nets Deron Williams with
his son Deron Jr. aka DJ, 3, and
wife Amy at a celebration at
Brooklyn Borough Hall.

NEW YORK, N.Y. -- Sitting at a SoHo restaurant, expressing a mood seemingly solar systems removed from the Nets’ struggles on the court, Deron Williams is smiling while covered with orange face paint — “festive colors,” he calls it. A little girl comes up to Williams decorated like a tiger. He growls, prompting the child to growl back more ferociously.
Some other kids are opening gifts donated by Williams, with basketballs and X-Box games among the favorites. Every year the star point guard and his wife, Amy, put together this kind of charitable holiday party with their Point of Hope Foundation.
But on Saturday the theme is different: autism awareness. The inspiration is 3-year-old D.J. Williams, the energetic young boy walking around the restaurant with a pretzel stick and a toy.

A Mother's Anger: Stop Linking Autism to Violence

A post on by Sarah Darer Littman.

 I've just listened to NRA Executive Vice President Wayne LaPierre suggest we need guns in our schools because "our society is populated by an unknown number of genuine monsters."
I cringed.
After his further suggestion that the United States create a nationwide database for the mentally ill, I got angry. Leaving aside the issue of medical privacy laws, I found it ironic that an organization so vehemently opposed to gun registration would propose such a measure.

Saturday, December 22, 2012

Holly, Jolly Christmas Stressful for Some

Holiday lights can be
hard on autistic

LOVELAND, Colo. -- Sparkly lights and tinsel, lively music, crowds of visitors -- the very things that "help to make the season bright" for many at Christmas -- can bring stress to people with autism.
So "getting ready for Christmas" takes on a whole new meaning for parents of autistic children.
"A lot of kids with autism are very routine-based and routine-oriented," said Rhonda Ayres, an autism interventionist with the Thompson School District. "As we know during the holidays, all routines are out the window."

Friday, December 21, 2012

What Does Autism Have to Do With It?

Great interview from TELL ME MORE of NPR News. Sandy Hook shooter Adam Lanza has been described as "quiet" and "different." Unconfirmed reports have suggested that he may have had autism or Asperger's syndrome. Host Michel Martin looks at the speculation about Lanza, and talks about the myths and truths about autism and Asperger's syndrome with two moms and a child psychiatrist.

By now you might have heard that the shooter, Adam Lanza, has been described as quiet or different. Many reports quoting unnamed sources or hearsay from the family's divorce mediator have suggested that Lanza had autism or Asperger's syndrome.
Now it's important to note that officials have not confirmed those diagnoses. Still, we wanted to dig deeper into the conversation that people are now having, which is what if Lanza was on the autism spectrum? What, if anything, does that mean? To talk more about this we're joined now by a group of people who are very well acquainted with autism and Asperger's.

Google Executives Acquitted in Italy

An Italy appeals court acquitted three Google executives of 2010 charges of having violated the privacy of an Italian boy with autism by letting a video of him being bullied be posted on the site in 2006.
The court's decision, in a public hearing, overturned a previous ruling in 2010 which had sentenced the executives to jail. Reasons for Friday's decision will be made public in 60 days.

When Will Military Kids Matter Enough?

A soldier embraces his daughter
after returning from Afghanistan.
Less than a week after the tragedy in Newtown, Conn., conferees from the House and Senate met to discuss this year’s defense bill. Sadly, at least some of those conferees seem to have missed one of the larger points related to that horror: the need for families, in this case military families, to have access to the needed behavioral health treatments to treat their children with disabilities.
Let me be emphatic to say I’m not linking Newtown to children with disabilities. But it has reminded us of the importance of mental-health care for all.

FDA Warns School About Shock Therapy

The U.S. Food and Drug Administration is warning a Massachusetts school over its use of a controversial skin-shock therapy with students who have disabilities.
In a letter sent to the Judge Rotenberg Educational Center earlier this month, FDA officials said the devices used to administer electric shocks at the school “violate the Federal Food, Drug, and Cosmetic Act (Act) because your facility has failed to obtain FDA clearance or approval.”

Thursday, December 20, 2012

I Have Asperger's; I Am Just Like You

A must-read post by Michael Ryan, an assignment producer who works on the homepage.

I am not an expert on Asperger's syndrome. But I am an expert on me, and I have Asperger's.
And attention deficit hyperactivity disorder. And a bit of obsessive-compulsive disorder. Having all three disorders together is not unusual, my doctor says.
Like you, I get angry sometimes. And, like you, I would never think of channeling that emotion into violence.

A Young Publisher with Autism Thrives

PUXICO, Mo. -- Huge accomplishments are starting to pile up for one Puxico seventh grader.     
Jacob Robertson performing.
He refuses to let autism get in his way.
The diagnosis of Asperger's Syndrome was no doubt a challenge, but one 12-year-old Jacob Robertson took head on.
He's a musician and quite the writer, as he even just got a book published.

Troubling Sandy Hook Legacy May Be Backlash Against Children with Autism

On the first day back to school after 20 first-graders and six adults died at a Connecticut elementary school, students at a Utah middle school gathered to discuss the massacre.
A boy raised his hand. "The reason why this man shot little kids is because he has autism," he said.
Tricia Nelson's seventh-grade son was at the assembly. He's shy, not the kind of child apt to speak in public, but his hand darted up in response. "Autism doesn't make people shoot other people," he said.

Wednesday, December 19, 2012

Therapy Dogs Lend Hand to Grieving Newtown

Addison Strychalsky, 2, of Newtown,
Connecticut, pets Libby, a golden
retriever therapy dog, during a visit
from the dogs and their handlers
to a memorial for the Sandy Hook
Elementary School shooting victims.
NEWTOWN, Conn. -- Lisa Peterson went straight to the dogs - therapy dogs, that is - when she returned home to Newtown from a business trip to Florida upon learning of the Sandy Hook school massacre.
"I saw them and I just had to come over and hug them," Ms Peterson said as she stroked Abbie Einstein and Smartie Jones, two gentle, purebred golden retrievers whose mission in life is to make people feel better.
"There's something about that unconditional love (from dogs) that is just so nurturing," she said.

Our Sons Are Not Future Killers

From The New York Times' Motherlode blog, a post by Emily Willingham is science editor at the Thinking Person’s Guide to Autism, manages the Double X Science blog, and blogs at Forbes.
The Asperger’s stereotype before the shootings in Newtown, Conn., was relatively harmless if inaccurate – that of a quirky, brilliant male unable to read subtle social cues or navigate the world of non-autistic people. Think Sheldon on “The Big Bang Theory” or Abed on “Community.”
The reality, like any reality disconnected from network television, is quite different. People with Asperger’s have a highly variable set of skills and capacities, most of them unrelated to brilliance or prepossessing eccentricities. Average intelligence, very real struggles with social navigation, and joblessness are far more prevalent among those with Asperger’s  than cute personality quirks like wearing unmatched socks or exhibiting an endless fascination with trains.

Fla. Schools Focusing on Special Needs Expand

Bay Life Academy behavior aide
Darian Rohn claps as Julian Stibich
participates in a science experiment
A peek inside the classroom for students with autism spectrum disorder reveals nearly as many adults as youngsters.
Most of these children have aides who work with them throughout the school day. Occupational and speech therapists also work side-by-side with some of the students as they forge ahead, despite their disabilities.
In the upper levels at Bay Life Academy in Seffner, a fifth-grader may break away and attend a math course set up for third-graders, so she can work her way up to grade level. A fourth-grader at Livingstone Academy in Riverview may attend a reading class for second-graders, even though he is on-level in other areas.
Both schools are growing as demand for their specialized services grows.

Sandy Hook Victim with Special Needs Died in Aide's Arms

NEWTOWN, Conn. -- Staring down the barrel of a rifle, Anne Marie Murphy pulled Dylan Hockley close to her, trying to shield him from the hail of bullets that would kill them both.
Dylan, 6, had special needs, his family said Monday. And Murphy was his "amazing" aide, they said. He loved her, pointing happily to her photo on the Hockley's refrigerator every day.
"We take great comfort in knowing that Dylan was not alone when he died," said his parents, Ian and Nicole Hockley.

California State Senator To Call for Legislation to Protect Disabled from Sex Crimes

SACRAMENTO -- State Sen. Fran Pavley announced her intent Tuesday to introduce legislation to help protect developmentally disabled victims of sex crimes in California’s state developmental centers and state hospitals.
Pavley, whose senate district includes about half of the Santa Clarita Valley, is working with Disability Rights California, the California Coalition Against Sexual Assault (CALCASA), The Arc of California and United Cerebral Palsy to introduce legislation to require that sexual abuse victims within the state developmental centers and state psychiatric hospitals receive timely forensic medical examinations.

Tuesday, December 18, 2012

North Carolina Finds Funds to Keep Homes Open

Self-Advocates and staff rallied
outside the legislative building
last month.
State officials said Tuesday that they have freed up $1 million to allow people with mental illness or developmental disabilities to stay in group homes across North Carolina through the end of January.
A change in federal rules means that, as of Jan. 1, group home patients are no longer eligible to receive Medicaid payments for personal care services, such as assistance with bathing or feeding. The loss of funding puts the homes that rely on that money at risk of closing.

Parents Urge Lawmakers to Spare Special Ed Funds

ALBANY -- Parents of children with development disabilities spoke in Albany last week to plea with lawmakers to avoid cuts to the state's preschool special education program. They also wanted to counter negative media attention after state auditors recently discovered cases of fraud and inefficiencies in the program.

Autism Does Not Cause Violence; It's a Developmental Disorder, Not a Mental Illness

Much has been made of Adam Lanza, the 20-year-old shooter at Sandy Hook Elementary School in Newtown, Conn., who took so many innocent lives, as having Asperger Syndrome, a high functioning condition on the autism spectrum which has recently been reclassified as autism. Experts and parents who have children with Asperger Syndrome want everyone to know that there is no correlation between autism and violence and express concern that autism is a developmental disorder and NOT a mental illness. Parents of those with autism, who are already too often stigmatized in our society, are worried that this will lead to their kids being further shunned and misunderstood.

Report: Abuse Ignored at Group Homes

SEATTLE -- A watchdog organization says the state is failing to protect some of Washington's most vulnerable people — those with developmental disabilities who live in group homes. Disability Rights Washington says overworked investigators focus on rule compliance, often overlooking the substance of complaints.

Monday, December 17, 2012

Shooting Media Coverage Creates Dangerous Stereotypes of People with Autism

Like every other parent, I was heartbroken and very nearly physically ill as I watched the news unfold in Newtown, Conn., on Friday. I spent most of the afternoon fighting the urge to flee my desk and get to my two children — who were at school, safely and happily ignorant of the news — to hug them and smell the tops of their heads.
Then I saw a news report from ABC saying that Ryan Lanza had told authorities that his brother Adam, the alleged gunman in Friday’s massacre, had an autism spectrum disorder.
No. Oh, no no no no no.

Doctors Meeting Needs of Adopted Children

Dr. Elaine Schulte
When Eleanor Rybicki first came to the office of Elaine Schulte, MD, MPH, in August, she was a frail and tiny baby — so small she didn’t register on U.S. growth charts for her age group.
Joseph and Kimberly Rybicki, who adopted Eleanor from a Chinese orphanage, were nervous, but Dr. Schulte quickly put their fears to rest.
“Eleanor was malnourished and understimulated, both cognitively and physically,” Kimberly Rybicki said. “She could sit up, but just barely. She was not crawling, and it was clear that she had not spent much time on her stomach. Dr. Schulte was very helpful. Because of the experience she has had seeing these children over the years, she didn’t panic.”

Asperger's Is a Red Herring to Explain Newtown Shooting

Friends of Nancy Lanza, the mother of Newtown shooting suspect Adam Lanza, told 60 Minutes on Sunday that he suffered from Asperger's syndrome, and that dealing with the condition dominated both their lives. It's already been reported that Lanza reportedly had the condition, but there's no evidence it had any effect on his rampage. As the nation sets out to understand how Friday's massacre came to pass, some are rightly worried that the high-functioning form of autism will become unfairly stigmatized.

Speculation Over the Shooter's Disorder

Adam Lanza as a middle school
I hesitate to post this, because it is still hearsay that Adam Lanza had any form of autism. There have been reports of mental illness and it just seems to early to speculate. There have been so many errors in the media's coverage of this tragic story. So perhaps that's why I am so reluctant to even address this issue. Please share your thoughts on this.
Among the details to emerge in the aftermath of the Connecticut elementary school massacre was the possibility that the gunman had some form of autism.
Adam Lanza, 20, had a personality disorder or autism, his brother reportedly told police. Former classmates described him as socially awkward, friendless and painfully shy.
While those are all traits of autism, a propensity for premeditated violence is not. Several experts said that at most, autism would have played a tangential role in the mass shooting -- if Lanza had it at all.

Sunday, December 16, 2012

Autistic Workers Seen as Reliable, Hard Working

An estimated 1.5 million people in the United States have autism spectrum disorder, so chances are you may be affected by autism in some way.
Your own child, a relative or even a friend may be dealing with the disorder.
But chances are good you soon may start to deal with autism in the workplace. The most visible generation with autism is getting ready to graduate from high school and will be looking for jobs, says Scott Standifer, a University of Missouri researcher who studies employment issues affecting adults with autism.
Some employers such as Walgreens, AMC Theatres and TIAA-CREF already are making efforts to hire and train autistic employees, finding such workers to be dependable and hardworking, Standifer says. These employers are making employment inclusive and don’t isolate autistic workers or give them only limited tasks.

Saturday, December 15, 2012

Holiday Message to Autism Parents

Susan Moffitt, an editor at Autism Key, is the single mother of high functioning autistic twin sons who are now fifteen. When not advocating for them, she pursues her multiple creative passions of fine art, piano composition, and writing.

For those of you who followed my articles in the past, you will know I’ve been out of the autism loop for a while, consumed by the affairs of my immediate family of sixteen-year-old twin sons with high functioning autism. 
Having seen them to their junior year of high school, I can tell all of you with younger children that it does get better.  Not withstanding the day in and day out rigors of dealing with autism, the myriad ways you work to bring your child to higher ground do, in fact, manifest in the expanse of time.

Parents Feel Impact of Caregiving

Caring for an adult child with developmental disabilities or mental illness increased by 38 percent the chances that an aging parent would develop disabilities of their own, according to findings of a new study led by Dr. Subharati Ghosh, a post-doctoral research fellow at the Lurie Institute for Disability Policy in the Heller School for Social Policy and Management at Brandeis University.
The study, published in Psychiatric Services, highlights economic and psycho-social challenges faced by parents of adult children with disabilities, compared with parents of children without disabilities.

Friday, December 14, 2012

Autistic Aduts Report Worse Health Care

Adults with autism report significantly worse health care experiences than adults without autism, according to a study published in the November issue of the Journal of General Internal Medicine.
Christina Nicolaidis, MD, MPH, of the Oregon Health & Science University in Portland, and colleagues used a community-based participatory research (CBPR) approach to adapt a survey for adults with autism. The online cross-sectional survey was completed by 209 adults with autism whose health care experiences were compared with those of 228 adults without autism.

Advocates Hope Senate Reconsider Treaty

WASHINGTON -- Advocates for Louisiana's disabled residents are trying to figure out why the Senate failed to ratify what they view as a non-controversial treaty designed to bring U.S. protections to other countries. The vote fell five short of the two-thirds margin needed to ratify a treaty.
The advocates contend the treaty, known as the United Nations Convention on The Rights of Persons with Disabilities, would insure that disabled Americans, including military, are provided with protections when they travel abroad.

Families Shocked Over Center's Decertification

Shock and anguish Thursday night for the families of those being cared for at the Sonoma Developmental Center. It provides care and assistance to hundreds of patients with intellectual challenges. In a surprise decision that we broke Wednesday -- regulators are yanking the facility's license.
The center has had a troubling history of reported abuses and poor investigations by its police force. And now, the Department of Public Health has moved to shut down a major portion of the center -- the program that cares for patients with severe disabilities who aren't bedridden but live on the premises.

With Resolution, U.N. Puts Focus on Developmental Disabilities

The United Nations is urging countries worldwide to do more to support and accept people with autism and other developmental disabilities.
A resolution unanimously approved this week by the the U.N. General Assembly calls for member nations to embrace those with developmental disorders as full members of the community.

Thursday, December 13, 2012

Where Great Art Transcends Disability

In 1950, Judith Scott, a seven-year old girl with Down's Syndrome, became a ward of the state. She spent the next 35 years in an Ohio state institution. Her twin sister, Joyce Scott, who does not have Down's Syndrome, describes waking up one morning to find Judith simply gone. In her forthcoming book, EnTWINed: Secrets From the Silent World of Judith Scott, she tells a dark story of her mother and father retreating into depression and the aching absence of her twin. "My parents didn't know any better," she told me. "The doctors and the pastor recommended institutionalization in those days." As an adult, Joyce visited the institution when she could, but the aching absence of her twin remained.

Real World Lessons Help New Jersey Special Education Students Find Their Place

Adam Troyer using a stationary
bike at Volt Fitness in Glen Rock.
Confronting a tidal wave of autism and other mental disorders, educators have turned to “community-based instruction,” a program that extends learning with experiences outside the classroom.
For students at the Phoenix Center in Nutley, that means phys ed includes hitting the treadmill and weights at a fitness center.
Students at the Sinai Shalem High School in Teaneck study math in class, then practice addition and subtraction by depositing coins at a bank.
And those at the Forum School in Waldwick learn patience — that absolute necessity of society — by waiting in line at a grocery store.

'I Could Never Do What You Do'

Came across this fascinating post by Rose Woodhouse, the mother of three children, one of whom has special needs, on The League of Ordinary Gentlemen blog.

There is a tendency, among people who do not live in Holland (i.e., who do not have a child with disabilities) to praise us Holland-dwellers. “I could never do what you do!” “You guys are simply amazing, the way you take care of him,” or “He’s lucky to have you.”
I’m not sure what to respond to these. (Well, to the last, I do say, “We’re lucky to have him,” because this is not something anyone says about my other kids.) Here’s what I am thinking, though, when people praise me. It’s not as if I had a choice, here. I’m doing the best I can with the hand I’ve been dealt, and so would you. What would you say if I didn’t take care of him? If I abandoned, or simply neglected him? Would you say, “Of course, that’s totally understandable!” I think not.

Medicaid Benefits Cuts Impact Thousands in N.C.

Changes to state Medicaid rules that will cut benefits to group home residents across the state will also affect between 3,000 and 4,000 people with Alzheimer's disease who live in adult care facilities, sources close to state proceedings told WRAL News Wednesday.
The federal government is pulling 40 percent of its funding out of adult care facilities under new Medicaid rules that aim to ensure the same personal care eligibility standards exist for people no matter where they live, instead of having rules that may steer people toward institutional care.

Embattled N.J. Institution Gets New CEO

TRENTON — The former vice president of a national company serving people with disabilities will run the Hunterdon Developmental Center, the target of several internal investigations that shook up its top leadership this year.
Human Services Commissioner Jennifer Velez announced Califon resident Lisa Coscia begins on Monday at the Union Township facility, home to 520 people with developmental disabilities.
Coscia replaces William "Gus" Wall, the longtime CEO who retired in September following an investigation into a senior doctor that was administering potentially dangerous levels of Vitamin D to patients with developmental disabilities for an unauthorized study.

UC Irvine Receives $14 Million for Autism Work

IRVINE, Calif. -- UC Irvine will receive $14 million in public and private funds to expand autism research and create a comprehensive clinic that will offer autism diagnostic services and treatment.
The gift, to be announced today, comes from the Children and Families Commission of Orange County, which allocates state tobacco tax money, and the William and Nancy Thompson Family Foundation in Newport Beach.

Wednesday, December 12, 2012

Google Executives Should be Jailed for Autism Video, Italian Prosecutor Says

MILAN — An Italian prosecutor has asked an appeals court to uphold jail sentences for three Google executives charged with violating the privacy of an Italian boy with autism by letting a video of him being bullied be posted on the site in 2006.
"Not only has the privacy of minors been violated but lessons of cruelty have been given to 5,500 visitors," Milan prosecutor Laura Bertole Viale said on Tuesday at the appeals hearing.

Fragile X Protein Linked to Autism Genes

DURHAM, N.C. – Doctors have known for many years that patients with fragile X syndrome, the most common form of inherited intellectual disability, are often also diagnosed with autism. But little has been known about how the two diagnoses are related.
Now a collaborative research effort at Duke University Medical Center and Rockefeller University has pinpointed the precise genetic footprint that links the two. The findings, published online in the journal Nature on Dec. 12, 2012, point the way toward new genetic testing that could more precisely diagnose and categorize the spectrum of autism-related disorders.

Autistic Boy Funds Research with Holiday Cards

Just one greeting card benefiting
autism research.
MADISON, Wis.-- Giizhik Klawiter has never been so much as a visitor to the University of Wisconsin-Madison's Waisman Center, but the 10-year-old boy with autism from Hayward, Wis., is one of the most faithful supporters of the center's developmental disabilities research.
For four years, Giizhik's mother, Pam Miller, has visited Walmart, the casino, grocery stores and craft fairs to sell Christmas cards designed by Giizhik (whose name means "white cedar" in Ojibwe) and his brother Mino (short for Minode'e, loosely "has a kind heart").
"So far we've been able to donate about $5,600 with the cards, and from the start we wanted that money to go to research," Miller says. "I know it's important for families like us to have other things — support and services — but I wanted to help research, so that we'd keep learning about autism."

Monday, December 10, 2012

Opinion: U.N. Treaty Vote Defies Even Dole

It may be difficult for many to remember how formidable Bob Dole was. The respected lion of the Senate, former Senate majority leader and standard-bearer of the Republican Party in 1996 worked miracles across the aisle with Democrats. It was a different era.

Asperger's Identity Crisis Big Fear

SCHENECTADY, N.Y. — The adult Asperger's support group, meeting over pizza last week, briefly debated the issue without coming to a resolution: What should they call their gathering since Asperger's — the diagnosis, not the condition — will soon cease to exist?
It's a question of identity.
"There seems to be a culture, an 'Aspie' culture," said one Capital Region woman with Asperger's who identified herself as R.Z. "They feel part of their culture will be taken away."

Don't Be Afraid to Hire People with Disabilities

Jamie Smith at the Special Olympics
World Games.
One of the best experiences of my life was watching Jamie Smith, a young man with autism, leave his routine in Chicago, travel to the Special Olympics World Games in the chaotic Chinese city of Shanghai — and succeed.
Jamie's success — managing in a foreign country and bringing home a silver medal — was the result of one thing: hard work. And I've yet to meet a harder worker than him, or a person who more appreciates the opportunities a job presents.

Ohio Mom Creates Emotion Recognition App

Therese Wantuch and her son, Jack.
CINCINNATI -- A Cincinnati-area mother is on a mission to help children and families across the globe break through some of the daily challenges faced by those with autism and Asperger's Syndrome.
This year Therese Wantuch launched Training Faces, an application for iPads, iPhones and Android phones designed to help people like her son, Jack, with emotion recognition.

Young Autistic Adults Seek White-Collar Careers

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."

Friday, December 7, 2012

How Medicaid Coverage Can Fall Short For Americans With Disabilities

The last four years have produced historic debates over the nature of America’s health care safety net. But Medicaid — a state-federal partnership program that serves some of the sickest, poorest, most overlooked Americans — is still in need of serious reforms when it comes to its approach toward covering Americans with special health care needs.
Federal requirements for the populations and services that states must cover under their Medicaid programs are currently broken up into “mandatory” and “optional” categories — misleading characterizations that have nothing to do with the actual medical or financial realities of the Americans these broad generalizations claim to encapsulate.

Goodbye Asperger’s?

In Wired magazine's "Geek Mom" column, Andrea Schwalm, whose child will be impacted by the latest revisions to the DSM, explains: "Why I think it's a good idea that the Asperger's dx is going away.”

A couple of years before my oldest child was born, the DSM, the Diagnostic and Statistical Manual of Mental Disorders created by the American Psychiatry Association (and used by insurance companies and school systems to mete out services), officially re-evaluated its autism diagnosis, further slicing it into “high” and “low-functioning” subsets.

It's Been a Tough Road for Special Olympics Powerlifter

If this were a typical sports story, the headline might read, “Englewood man wins state powerlift, looks to regionals.”
Robbie Dixon's story is a bit deeper than that. It started when he was in his mother's womb, and two chromosomes split, leaving him with Down syndrome.
At the time, Robbie's diagnosis unnerved Tim and Dorann Dixon, who already had three entirely healthy children. As they learned, it could happen to anyone.
It's what happens afterward that really counts.

Hair Did and Nails Done: Special Needs Women Receive Free Makeovers

A 22-year-old girl named Katie sported a black feather boa, a pink tiara, newly trimmed and straightened hair, foundation, eye shadow, mascara and lip gloss Thursday, thanks to a program called Beautiful You.
Katie designed the look herself. She even gave it a name.
“Dramatic,” Katie said.

The D’Shaw Beauty School artists behind dramatic performed their magic for free thanks to Mrs. Treasure Valley, Joy Cameron.
“Yesterday,” Joy said, “I just couldn’t get the smile off my face.”

Thursday, December 6, 2012

Florida Health Administrator Denies Kids are Dumped in Nursing Homes

TALLAHASSEE — Florida's top health administrator told lawmakers at a Senate committee meeting Wednesday that she was "enraged" by "sensational" reports that her agency was funneling sick and disabled children into nursing homes designed for adults.

"We do not place our medically complex or medically fragile children in nursing homes," Liz Dudek, secretary of the Agency for Health Care Administration, told members of the Senate Health Policy Committee, adding that parents are given the choice of where their children live and receive care. "The last place we want children is away from their parents."

Federal civil rights administrators see it differently.

Florida Teen Dies After Disabled Mom Loses Custody

The last time Doris Freyre saw her 14-year-old daughter, Marie, alive was around 1 p.m. on April 26. She watched helplessly as the disabled girl was strapped to a stretcher and sent by ambulance to a nursing home in Miami -- five hours away from their home in Tampa, Fla.
Florida child welfare authorities had deemed Freyre, a 59-year-old single mother with six herniated discs and carpal tunnel syndrome in both her wrists, unable to take care of Marie, who had cerebral palsy and suffered from life-threatening seizures.

614,000 School Students Suffer from Development Disabilities

About 614,000 students at public elementary and junior high schools in Japan are possibly suffering from developmental disabilities, and about 40 percent of them do not receive any special support, according to a survey conducted by the Ministry of Education, Culture, Sports, Science and Technology.
The survey released on Dec. 5 shows that two to three students in a class of 40 students have difficulty reading and writing, and they cannot concentrate on their classes. 

Autistic Kids 9 Times More Likely to Have ER Visit

BALTIMORE -- New research has found that children with autism spectrum disorders (ASD) are nine times more likely to be at a hospital emergency room for psychiatric reasons.
The study found that severe behaviors tied to aggression were the leading cause of emergency visits among autistic children.
The researchers also found that the likelihood of a psychiatric emergency room visit was higher if a child carried private health insurance rather than medical assistance.

A Blood Test for Autism?

Earlier detection of autism, relying on markers in the blood, may help more children to take advantage of helpful behavioral therapies.
Diagnosing autism currently requires hours of observation by clinicians and a far from objective series of behavioral measures, but improvements in genetic testing could make the process more efficient.

Wednesday, December 5, 2012

'Fear' Keeps Roles From Lauded Disabled Actors

Australia's most in-demand ensemble of actors, lauded this year for creating the nation's best stage play and about to tour internationally, would struggle to make a living outside their theatre company because of what disability advocates call ''fear of the unknown''.
Cate Blanchett has jointly commissioned Back to Back Theatre's next work to premiere in Sydney next year and the company's actors, who all have intellectual disabilities, are in demand from New York to Paris for their tour of Ganesh Versus the Third Reich from next month.
But while Ganesh won best play at this year's Helpmann awards, Back to Back's artistic director, Bruce Gladwin, says its actors ''would really struggle to make a living'' outside their four-day-a-week employment with the company in Geelong.

Lack of Autism Coverage Leaves Parents Upset

At first glance, the Office of Personnel Management’s decision to permit the Federal Employees Health Benefits Program (FEHBP) to cover a certain autism treatment next year seemed like an important step forward. More than 30 states already mandate insurance coverage of Applied Behavior Analysis (ABA), so it appeared that Uncle Sam is finally catching up.
He is. But his step, while important, also doesn’t take him very far. It continues to leave him, autistic children and their federally employed parents behind the curve.

ABC News Video: Kids with Autism Can Visit Santa

Visiting Santa is a must do for kids this time of year. But for children with autism, all the lights, noise and big crowds can be too much.
So the Mall in Columbia is bringing in Santa an hour earlier on Wednesday to visit with these kids and their families. From 9 AM to 10 AM, children with autism and their families can visit with Santa. The mall will be dimming the lights, turning off the music, and keeping it quiet to create a sensory friendly environment.

Republican Opposition Downs UN Disability Treaty

Led by Republican opposition, the Senate on Tuesday rejected a United Nations treaty on the rights of the disabled that is modeled after the landmark Americans with Disabilities Act.
With 38 Republicans casting "no" votes, the 61-38 vote fell five short of the two-thirds majority needed to ratify a treaty. The vote took place in an unusually solemn atmosphere, with senators sitting at their desks rather than milling around the podium. Former Senate Majority Leader Bob Dole, looking frail and in a wheelchair, was in the chamber to support the treaty.

Tuesday, December 4, 2012

MBTA Will Close Government Center Station for Two-Years for Necessary Upgrades

The MBTA has plans to shut down the Government Center Station on City Hall Plaza for two years starting in the fall of 2013 in order to improve the infrastructure. And, as always, riders are less than enthused.

“Epic Fail,” “Yowza” and a collective “ugh” were the most-used reactions on social media sites when the story about the closure broke over the weekend.

But updating the station, which will cost roughly $90 million and bring the MBTA into compliance with the Americans with Disabilities Act, in the end, is meant to improve convenience for T riders, not hinder it.

Gridlocked Senate Considers Worldwide Disability Rights Pact

Despite the overwhelming wish among Americans for an end to partisan standoffs in Washington, the fate of a treaty to promote international rights for people who are blind, crippled by disease or war, or otherwise disabled indicates that the Senate continues on a divided path.
The treaty’s troubled fortunes provide a twist on the usual tale of congressional gridlock, however, because Senator John F. Kerry of Massachusetts and other supporters of the pact enjoy considerable bipartisan support as well as broad backing from the business community and veterans groups.
Two prominent Republicans, Arizona Senator John McCain and former attorney general Richard Thornburgh, joined Kerry at the Capitol on Monday to demand passage. The proposal is backed by former Kansas senator Bob Dole, the GOP presidential nominee in 1996, and former president George H.W. Bush.

Monday, December 3, 2012

Asperger's Syndrome Dropped from American Psychiatric Association Manual

Asperger's syndrome will be dropped from the latest edition of the psychiatrist's "bible," the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5.

The American Psychiatric Association (APA) announced on Saturday the changes to its flagship manual that doctors use to diagnose patients with mental disorders. It's the first major rewriter to the DSM in nearly 20 years.

The familiar "Asperger's," along with some similar disorders, will be lumped together under autism spectrum disorder, "to help more accurately and consistently diagnose children with autism," the APA said in a statement.

A Charity Calls for 'Lunatics' Term to be Removed From Irish Law

An Irish charity that supports people with intellectual disabilities has called for an end to the use of the term 'lunatics' in Irish law to describe people with intellectual disabilities or mental health problems.
Inclusion Ireland said despite repeated promises of change the term was still used in Irish law.
It wants the Republic's 1871 Lunacy Act and the Ward of Court system reformed.
The charity said there was an urgent need to reform this long outdated law.
Chief executive Paddy Connolly said: "This is not an old law that has no affect on people in modern Ireland."

Calls Grow for Local Police to Take Developmental Center Cases

Sonoma County’s top prosecutor has joined with advocates for the developmentally disabled in calling for local police to take charge of criminal investigations of patient abuse at California’s board-and-care institutions.
Cases involving reported assault and negligence have long been left to the Office of Protective Services, the police force at the five state-run developmental centers. The force's detectives and patrol officers have routinely failed to do basic police work even when patients die under suspicious circumstances.

Friday, November 30, 2012

U.S. Senate Passes Gillibrand Amendment to Cover Care for Military Kids with Autism and Other Disabilities

U.S. Senator Kirsten Gillibrand, a member of the Senate Armed Services Committee, announced that the Senate voted for her amendment that would cover behavioral treatment for military children with autism spectrum disorders and other disabilities. 
Based on the USA Heroes Act that Senator Gillibrand authored and introduced in 2009, this bipartisan amendment under the 2013 National Defense Authorization Act (NDAA) bill would help reduce the burden of military families and their children living with autism and other disabilities by requiring the military health insurance program to lift restrictions on behavioral care and expand proven treatment by meeting the national recommended standards.

Severity of Autism Linked to Rigid Fearfulness

New research shows that children with autism have a hard time letting go of old, outdated fears.
Furthermore, this rigid fearfulness is linked to the severity of classic symptoms of autism, such as repetitive movements and resistance to change.
“People with autism likely don’t experience or understand their world in the same way we do,” said Mikle South, Ph.D., a psychology professor at Brigham Young University and lead author of the study.

S. Fla. Troupe Giving Disabled The Gift Of Dance

John Beauregard suffered a spinal cord injury in a fall many years ago. Bonnie Malcolm has brittle bones. James Salter has Down Syndrome. Guillermo Acosta has intellectual disabilities while Adam Eckstat was born with Spina Bifida. What do they have in common?

Thursday, November 29, 2012

Program Helps First Responders Learn How to Help People with Special Needs

Disabilities affect millions of New York residents. When first responders are called to help those in need, they are obligated to help regardless of the cause. That's why one university created a program to help those who help us.
Whether it's law enforcement, firefighters or EMS, thousands of Monroe County's first responders are thoroughly trained at the Public Safety Training Facility. Today about a dozen responders got a very different kind of training that officials believe will end up saving lives not just here, but across the state.

Opinion: Nursing Home No Place for Children

FT. LAUDERDALE, Fla. -- As the executive director of Victory Living Programs, a non-profit organization that provides services to individuals with disabilities in Broward County, I was troubled to learn that the state of Florida is accused by the United States Department of Justice of warehousing hundreds of children with intellectual and developmental disabilities in nursing homes.
Some of these children have been in nursing homes for as long as 10 years. Children and nursing homes should only be mentioned in the same sentence when discussing a child visiting or volunteering at a nursing home. Certainly not in describing a child's place of residence. This practice is in total conflict with the Americans with Disabilities Act.

Police Ignored, Mishandled Abuse of Disabled

Patients at California’s board-and-care centers for the developmentally disabled have accused caretakers of molestation and rape 36 times during the past four years, but police assigned to protect them did not complete even the simplest tasks associated with investigating the alleged crimes, records and interviews show.

Wednesday, November 28, 2012

Can a Baby's Cry Provide Clue to Autism Risk?

Researchers have analyzed brain scans and eye movements as harbingers of autism. Now they’re listening to babies’ cries. Scientists at Brown University think it’s possible that infants’ early cries might provide a clue to whether they’re at risk of developing autism, based on a small study they conducted on about 40 babies. They compared the cries of one group, considered at risk of autism because they had older siblings with the disorder, to a second low-risk group. When the babies were six months old, they were videotaped in order to collect a vocal sampling. At some point during the 45-minute filming, the infants cried.
Researchers have analyzed brain scans and eye movements as harbingers of autism. Now they’re listening to babies’ cries. Scientists at Brown University think it’s possible that infants’ early cries might provide a clue to whether they’re at risk of developing autism, based on a small study they conducted on about 40 babies. They compared the cries of one group, considered at risk of autism because they had older siblings with the disorder, to a second low-risk group. When the babies were six months old, they were videotaped in order to collect a vocal sampling. At some point during the 45-minute filming, the infants cried.

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