Wednesday, October 31, 2012

Indianapolis Teen with Autism Found

INDIANAPOLIS -- An Indianapolis teen with autism is found cold and wet, but safe after disappearing for nearly 27 hours.
Hunter Valant was found on Old Oaklandon Boulevard North Drive just before 10:30 p.m. Tuesday. His friends and family are now celebrating, thankful he's alive.

Kaiser Finds More Medicaid Managed Care

Analysts at the Henry J. Kaiser Family Foundation have found that 10 states will be making major changes to Medicaid managed long-term care (LTC) programs in fiscal year 2013.

Special Bond with Birds Helps Teen Soar

Drue Sheffield with her parakeet,
Charlie.
SALT LAKE CITY — Nobody can explain the bond Drue Sheffield has with birds, and perhaps it’s just as well.
Words aren’t really necessary when Drue carefully scoops a pigeon into her arms at the park and delicately strokes its neck feathers, or when she sets a mourning dove aloft after weeks of tending to a broken wing.
All her parents know is that the connection with birds has always been there and that caring for the feathered creatures has helped their daughter to soar as well.

Empathy and Analytical Thinking at Odds in Our Brains, Study Finds

Even the most intelligent, complex brains can be taken by a swindler’s story, a new study from Case Western Reserve University shows, even stories that prove false upon a second look.
The new study, published online in the journal NeuroImage, reveals that when the brain fires up the network of neurons that allows a person to empathize, the network used for analysis is suppressed. Our ability to appreciate the human cost of our action is repressed when the analytic network is engaged.

redOrbit (http://s.tt/1rqWi)

Hurricane Autism Has Made Landfall

From our friends at the Age of Autism. Something we've been talking about for years . . . autism isn't just about children; there are thousands of adults on the spectrum.

Looking back over the last several weeks I’ve noticed a steadily increasing trend in the news — more and more stories are coming around the country talking about the aging out ofthe autism generation.  It’s not surprising that this isn’t a cause for alarm.  Mounting numbers of children with autism have been calmly accepted for the last several decades by doctors, health officials, and the media.  And of course, children grow up, so this is only to be expected

Panel OKs Closure of Illinois Developmental Center

BOLINGBROOK, Il. -- The state will work to find new homes for residents at a central Illinois institution for the developmentally disabled after a state panel agreed Tuesday to close it for good, part of Gov. Pat Quinn’s sweeping plan to change the way such residents are cared for and to save tens of millions of dollars a year.
The Illinois Health Facilities and Services Review Board voted, 6-1, to allow the Department of Human Services close the Jacksonville Developmental Center, which has provided a home for developmentally disabled adults for more than 100 years. Most will be moved into small group homes or apartments, which many advocates say allows them to live more productive and satisfying lives.
The closure had been set for today, but it was delayed until Nov. 21.

Tuesday, October 30, 2012

Celebrating a 'Small Victory'

From our friend Laura Shumaker at SFGate.com

Matthew and I went to lunch the other day, and he ordered water to go with his meal. When he stepped up to the water/soda machine, he decided he wanted root beer instead, but paused and looked at me before he filled his glass. “Isn’t there an extra charge for root beer? I’d better go pay for it first.”
The fact that Matthew stopped himself and wondered   “Is this free like the water?” was huge, and I smiled about this victory all day.

Study: Autism Tough to Spot Before 6 Months

The development of 6-month-old babies who are diagnosed with autism in toddlerhood is very similar to that of children without autism, a new study suggests.
"We always thought that if a child had autism, we would be able to tell during infancy . . . but we were wrong," said study author Rebecca Landa, director of the Center for Autism and Related Disorders at Kennedy Krieger Institute in Baltimore. "At 6 months of age, babies who end up with autism by age 3 are scoring similarly on tests to children who didn't have autism."

Autism Therapy Alters Brain Activity

An innovative early intervention approach may be doing far more than helping children cope with autism. New research suggests that the behavior therapy is actually modifying brain development.
The intervention known as the Early Start Denver Model incorporates applied behavioral analysis, or ABA, with a play-based approach focused on relationship-building. It can be used with children as young as 12 months.

Monday, October 29, 2012

Using Music to Motivate Students

COLUMBIA — Music therapist Kristin Veteto smiled warmly at the boy sitting in front of her.
Kristin Veteto sings to Blake
Roberts in a classroom.


“Listen to Miss Kristin,” Veteto said in a cheerful, singsong voice.
She picked up a book called, "Rap a Tap Tap," and began singing the words to cue the child's attention.

Study Details Economic Benefits of Medicaid Expansion

Michigan is one of several states that has yet to decide which path it will take on expanding Medicaid eligibility to an effective rate of 138% of the federal poverty level starting in 2014. A new report concludes that if the state decides to proceed with expansion, it could save hundreds of millions over a decade even while increasing enrollment in the program by more than 600,000 people under this Affordable Care Act provision.

Medicaid On the Ballot

 From New York Times' columnist Paul Krugman.

There’s a lot we don’t know about what Mitt Romney would do if he won. He refuses to say which tax loopholes he would close to make up for $5 trillion in tax cuts; his economic “plan” is an empty shell.

Turning a Tragedy Around to Make a Difference

Stephanie Shirley with her late
son Giles.
From the U.K.'s Henley Stanley.

When Dame Stephanie Shirley lost her only child Giles, it could have torn her life apart.
Instead, she used the tragedy as a turning point to become one of Britain’s greatest philanthropists.
Since her autistic son died, aged 35, in 1998, Dame Stephanie — or “Steve” as she likes to be known — has gone on to invest more than a third of her £150million wealth into charities.
“Philanthropy comes from inside and each of us has some sort of feeling of wanting to make a difference,” she explains.
“When we have some focus, such as a mother who has died of cancer or a son who has autism, you think ‘I understand that area and I can help that — I’m not just going to be a victim’. I object to being a victim because I was a child refugee. If you can survive that then you become a real survivor.”

Is Everyone on the Autism Spectrum?

Interesting story by Benjamine Wallace of New York Magazine.

"Is every man in America somewhere on it?” Nora Ephron wondered about the autism spectrum in an e-mail to a friend a few months before her death. “Is every producer on it? Is every 8-year-old boy who is obsessed with statistics on it? Sometimes, when we say someone is on the spectrum, do we just mean he’s a prick? Or a pathological narcissist? I notice that at least three times a week I am told (or I tell someone) that some man or other is on the spectrum.”
Ephron was hardly alone. In August, after a string of campaign-trail bloopers by Mitt Romney (e.g., at a New Hampshire parade, he described his lemonade as “lemon … wet … good”), noted ­diagnostician David Shuster, a television personality at Current TV, floated the idea that Romney might be on the spectrum. Shuster cited “an uncle who specializes in the field of Asperger’s”—a mild variant of autism—who had “suggested that perhaps Mitt Romney has some sort of form of Asperger’s because he’s so socially inept in terms of being able to connect with people. What he thinks is funny is really sort of not so funny. I sort of wonder if there’s some sort of tic or something that he has that’s related to that.”

Sunday, October 28, 2012

Heart Transplant Fight Continues

Paul Corby with his mother.
POTTSVILLE, Penn. -- A Pottsville woman is fighting for her autistic son to receive a desperately needed heart transplant after he was denied placement on the national heart transplant list.
Paul Corby, 23, has PDD-NOS, also known as Pervasive Developmental Disorder-Not Otherwise Specified, an autism spectrum disorder. But he is otherwise able-bodied and highly functioning, and was diagnosed with a heart condition in 2008 when he was 19 years old.

Saturday, October 27, 2012

Down Syndrome Registry to Collect Medical Data

— The first national Down syndrome patient registry to be housed at the Eunice Kennedy Shriver National Institute of Child Health and Human Development was spearheaded by the Global Down Syndrome Foundation with support from many organizations, including those on the National Institutes of Health (NIH) Down Syndrome Consortium.
The national registry will collect much needed medical information from people with Down syndrome, and connect people with Down syndrome and their families with scientists engaging in research that is of interest to those people and their families. The registry will be used to identify critical health trends, the most effective treatments and clinical trials for potential therapies.

Read more here: http://www.heraldonline.com/2012/10/26/4368630/national-institutes-of-health.html#storylink=cpy

Friday, October 26, 2012

Behavior Therapy Normalizes Brains of Autistic Children, Research Finds

Autism likely has deep genetic roots, but the latest research provides hope that some learning techniques can lessen symptoms of the developmental disorder.
In children with the mildest cases of autism, these techniques resulted in changes in their brains that made them “indistinguishable” from those of unaffected children of the same age — essentially normalizing them, according to Geraldine Dawson in the department of psychiatry at the University of North Carolina at Chapel Hill.

Testing Autism and Air Travel

For Dana Napoleon, a flight attendant in Tacoma, Wash., zipping in and out the nation’s airports every week is second nature. Yet she is still filled with dread every time she flies with her 10-year-old son.
Other children might scamper through the airport, delighted by the moving sidewalks and dreaming of sand castles. But for Ms. Napoleon’s son, the crush of unfamiliar faces, the creeping pace of security lines and delays in boarding and takeoff can trigger excruciating anxiety.

Autism Speaks Looks To Commercial Market

The nation’s largest autism organization is launching a secondary entity with an eye toward bringing everything from medical innovations to apps for those on the spectrum to market.
Officials at Autism Speaks said this week that they are creating a new nonprofit known as Delivering Scientific Innovation for Autism, or DELSIA. The spinoff, which will be led by some of the organization’s existing staffers, will not raise any money of its own, but will rely exclusively on grants from Autism Speaks to fund promising new innovations.

The Unsinkable Alex Jones

From Huffington Post's Leda Natkin Nelis.

Alex Jones is our family's human safety net.
Alex is the glue that keeps our household in one piece. Even though she makes her way only intermittently into our lives without any official title or regular timetable, she has more than managed to make herself indispensible. Every special needs family needs an Alex Jones.

Strengthening Bonds with Students with Special Needs

OCEANSIDE, Calif. -- When Nicole Rosen was in middle school she saw a girl fall down on campus. Rosen realized the girl who fell was a special needs student, and what really stands out in Rosen’s memory is that no one helped the girl up.
“I saw all the rest of my classmates,” Rosen said. “Nobody responded to her and nobody helped her.”

Not-So-Special Treatment in Seattle Special Ed

SEATTLE -- Five years ago, a high-profile report found that Seattle's public-school district was decades behind the rest of the country in serving students with disabilities.
In response, then-Superintendent Maria Goodloe-Johnson declared special education a major priority and announced sweeping changes.
Today, the problems are even worse.

Thursday, October 25, 2012

iPad Band of Autistic Students on iTunes

FoxNews.com broke the news in July of a school band from New York City made up of special needs students using iPads as instruments. After the shoot, we suggested putting their original song on iTunes for the world to hear ... and now they have.
You can jam out to P.S. 177 Technology Band's original single, 4-2-4 Jam by downloading it off of iTunes; the $0.99 download proceeds go to P.S. 177.
Click here to download P.S. 177 Technology Band's original single 4-2-4 Jam.

Alabama Gets Funds for Money Follows the Person

Elderly and disabled Alabamians will soon have more help to live independently in their homes and communities instead of in institutional long-term care facilities, thanks to new grant funding from the Centers for Medicare and Medicaid Services (CMS).  Alabama was one of three states notified by CMS on October 2 that their request for a Money Follows the Person Rebalancing (MFP) Grant Demonstration project had been approved. Montana and South Dakota also received MFP grants, joining 43 other states and the District of Columbia with MFP initiatives.

For One Parent, Fear is Part of Daily Routine

ST. PETERSBURG, Fla. -- The topic is fear, and Nila Benito is a reluctant expert.
Fear of today. Fear of tomorrow. Of meals not eaten, and dangers not seen. Of lives not lived to their fullest, and of all of the complications in between.
Mostly, fear of the anguish seen this week in another mother's eyes.

What Ann Coulter Could Learn from My Special-Olympian Brother-in-Law

This is the Boyle Family on vacation
together: Matriarch Barbara Boyle
and me with my two children
Lili and Jake, my husband
David Boyle on the upper left,
and his brother Paul Boyle
on the upper right.
"I highly approve of Romney's decision to be kind and gentle to the retard." Ann Coulter referring to President Barack Obama in a tweet during the final presidential debates October 22, 2012.
Like the "N word" or "fag," the word "retard" has joined the class of words disfavored in public discourse and polite society because these words are most commonly understood to be slurs, used to hurt or diminish a person, not to classify them in any helpful manner.

Wednesday, October 24, 2012

Non-Speaking at Times: Autistic Provides Insight Into Communication Differences

From Ariane Zurcher of Huffington Post's Healthy Living.

AZ: Paula, you've described yourself as a "non-speaking (at times) autistic."
Yes. I think the phrase "non-speaking at times" captures my experience and also that of others who do have speech capabilities but can't always access them. I could also say "partially speaking" or "intermittent speaker." Just because one can speak at times does not mean speech is a reliable form of communication for that person. Also, when a person can speak part of the time, others may not notice they are having trouble speaking. I have sometimes not been able to speak and other people just thought I was "being quiet" or did not have anything to say; that dates back to childhood.

Presidential Debate Brings Attention to State Medicaid Plans

GOP presidential candidate Mitt Romney has pushed for Medicaid block grants that would significantly cut program spending and provide states with the ultimate flexibility to design the health care program without Washington meddling.
But the two examples of state Medicaid programs he cited as success stories during Monday’s debate don’t quite fit the mold of traditional block grants — at least not the kind that Republicans have been clamoring for.

N.Y.'s Medicaid Changes Are at Washington's Mercy

Depending on who is doing the talking these days, New York State is either a national model of how to curb Medicaid spending, or the nation’s prime example of Medicaid abuse.
Now billions of dollars in state revenue may ride on which image prevails, as presidential politics puts a new spotlight on the joint federal and state spending program for care of the disabled, the elderly and the poor.
No state spends more Medicaid money than New York — $54 billion a year. But Gov. Andrew M. Cuomo, a Democrat, persuaded health care providers and major health worker unions to live within a strict Medicaid spending limit last year, and to accept an ambitious Medicaid redesign that promises better health outcomes at a lower cost.

Attitudes Are the Real Disability

Barbara Aden in her apartment.
BELMONT, Calif. -- Barbara Aden, 31, has a love for life seldom seen.

She wakes up in the morning with a positive attitude, sings and dances her way through the day even as she works and offers sincere compliments to just about everyone she meets.

Born with Down syndrome, Aden has worked hard since she graduated Carlmont High School in 2001 to live life to the fullest on her own terms.

Helped by family, friends and agencies that serve people with developmental disabilities, Aden not only holds a regular job, she also has her own apartment in Belmont. She moved into the apartment earlier this year, and it is the first time she has ever lived on her own.

Special Needs and the Magic Kingdom

Jeremy Robb's piece from Technorati.

Several parents have talked about their experiences taking their child with autism to Disneyland. Some parents have shared their experiences and advice which I have always found helpful. In fact, I've posted about this previously myself.  I really wanted to share my recent experience.

Service Dog Donated to 6-Year-Old Autistic Boy

Lugnut, a service dog, with his
new family.
XENIA, Ohio —A 6-year-old autistic boy’s dream of getting a service dog almost was crushed after an Illinois woman scammed his family last year.
But on Tuesday, Samuel DeWitt met a donated service dog at 4 Paws for Ability in Xenia. Lugnut, a golden retriever, was given to the DeWitt family after $23,000 combined was donated by an anonymous donor from Cincinnati ($13,000) and Wrestle Against Autism ($10,000). The average cost to train a service dog is about $23,000.

Autistic Player Has Moment for the Ages

I just can't get enough of this story.

Anthony Starego
BRICK, N.J. -- A high school student with autism becomes a hero on the football field. Sounds like a good movie doesn’t it? Well, it’s a true story.
The score was tied with just 21 seconds left on the clock Friday night. Out trotted Brick High School’s Anthony Starego, an 18-year-old kicker who’s used to facing adversity.

Tuesday, October 23, 2012

Teen Author Pens 'Growing Up Autistic'

When he was diagnosed with autism at five years old, Trevor Pacelli knew that his childhood and adolescence would be drastically different than that of his peers. But he never let his disorder hold him back -- now 19, Pacelli is a published author. His book, "Six-Word Lessons On Growing Up Autistic: 100 Lessons To Understand How Autistic People See Life," offers practical guidance for understanding autism, and insight on the way that autistic kids and teens view the world. In the excerpt below, Pacelli shares 10 things you should know about autistic teens.

Autism Awareness: I See You Everywhere

Jo Ashline's column from The Orange County Register.

Some feel panic. Some feel insulted that there's panic. Some don't feel nearly enough.
Me? I feel privileged to be my son's parent. I feel petrified about his future. I feel too exhausted to get in the middle of the ongoing drama that continues to play out in our enormous and diverse community.
To me, you are more than a number, more than an ongoing debate about the proper terminologly to use when regarding your diagnosis, more than the bickering ad nauseam playing out on unfiltered internet connections every single day.
Instead, I'd rather take the time to reassure you. To let you know that I see you; I see you everywhere.

Monday, October 22, 2012

Teachers Union: NYC Special Education Overhaul Hasn't Worked

NEW YORK, N.Y. -- A two year-old overhaul of city special education programs has produced disappointing results, a new analysis shows.
City officials touted their 2010 effort to keep more kids in their local schools instead of sending them to specialty programs as a way to improve academic achievement for special education kids.
But an analysis by the teachers union found that students enrolled in the first two years of the program received lower scores on state tests than students in traditional special ed classes.

Moving People Out of Nursing Homes Proves Difficult, Despite Federal Funding

BALTIMORE -- After nearly two years in a Baltimore nursing home, Sonia Savage was eager to leave. She was in her late 20s, surrounded by older people and feeling “it wasn’t a place for me.”
Savage had suffered a traumatic brain injury, a stroke and broken bones after being struck by a car in 2009 while crossing the street with her 7-year-old daughter, who died after the crash. Now 30 years old, she still uses a wheelchair and walker but is in her own house, outfitted for the handicapped. “It was a new beginning,” said Savage.
Savage is one of 1,336 disabled or elderly low-income Marylanders who as of early July had moved out of nursing homes and other institutional settings as part of a national program called Money Follows the Person. The goal is to return them to the community.

Girl with Down Syndrome Takes to the Runway

Annaliese Hauser with her mom Katia.
DENVER -- Last Saturday, Annaliese Hauser and her parents traveled Denver and met many celebrities such as Oscar-winning actor Jamie Foxx, two-time Super Bowl champion  quarterback John Elway and singer Natasha Bedingfield.
But 11-year-old Annaliese felt like the true star of the day.
She was among about 30 models chosen to walk in the Be Beautiful Be Yourself fashion show, sponsored by the Global Down Syndrome Foundation.

Number of Students with Autism Doubles in Wichita

Andrew Fuchs gets
help from Pepper Stephy,
a para professional.
WICHITA, Kans. -- It’s a typical morning in Beth Orth’s classroom at McCollom Elementary School – though she might argue there’s no such thing – and five children are learning about the letter “S.”
“S says ‘ssss,’ ” says Orth, the teacher, pointing to a drawing projected on the smart board. “Spider in the soup! Ssss-ssss-ssss!”

Read more here: http://www.kansas.com/2012/10/21/2540727/number-of-autistic-wichita-students.html#storylink=cpy

Autism Support Group Focus on Parents' Needs

Sania Veal, left, and her mother
Carmen.
HARTFORD, Conn. -- When Carmen Veal's daughter Sania was diagnosed with autism at age 4, Veal's entire life became dictated by the disorder.
"I was stressed. I was depressed," says this single mom, a lifelong resident of Hartford. "I completely isolated myself and my child from the outside world, family included."
After a period of soul searching and reaching out for help, she learned to accept autism and pull herself out of her self-described funk. But she has met many other mothers and fathers who are struggling to cope every day. So she has created a new kind of support group, an innovative concept that highlights the needs of the parent.

Saturday, October 20, 2012

Taking a Swing at Golf

Shane Collins on the driving range.
TAMPA, Fla. -- They spread out along the driving range that morning, six students who had never played golf. The pro at the University of South Florida's Claw course handed them each a bucket of balls.
"Okay, now, let's keep an arm's length between the next person," said Jeff Gibson, who is also a physical education professor at USF. "We all need to loosen up a bit, then we'll get started."
Alex Lange, 20, moved to the left end of the line. "I just want to make that beautiful ball go sailing into the sky," he said.

Autistic Kicker Makes Game-Winning Field Goal

BRICK, N.J. -- In an enormous upset from New Jersey's Shore Conference, Brick Township senior kicker Anthony Starego booted a 21-yard field goal with 21 seconds to stun Toms River North 24-21.
According to a YouTube video uploaded shortly after the game, the 6-foot-3, 163-pound Starego is autistic.

Friday, October 19, 2012

California Investigates Special Ed Email

SAN FRANCISCO -- The California Department of Education will investigate whether the San Francisco Unified School District improperly denied summer school services to students with special needs to curb costs, violating federal regulations, officials said.
The state investigation follows a report by the Bay Citizen that Lisa Miller, the district's head of middle school special education, directed teachers and staff to consult with her before authorizing summer school for students with disabilities, saying the cost had become "exorbitant."

Puppies Kept Lost Child Warm in Woods

Kyle Camp being brought out of
the woods
Realize I'm late to the party with this story, but just incredible.

HACKLEBURG, Ala. -- An Alabama man credits a dog and her four puppies for helping rescue a 10-year-old boy with Down syndrome who was lost in the woods for 18 hours.
Those puppies kept him company, they kept him warm and comfortable,” Jamie Swinney of Hackleburg, Ala., told NBC News on Thursday. “We don’t know what would have happened to him had the puppies not been with him. And credit goes to the mother dog for leading me to the boy.”

Opinion: Shift Autism Research's Focus From Cures to Management

Carson Bard, 7, works on his
homework.
From New Jersey Star-Ledger's guest blog, a post by Lilia Kang, a freshman at Communication High School in Wall, who has interacted with autistic children for four years and performed autism research at the University of Medicine and Dentistry of New Jersey.

For a decade, the scientific community has made progress in the identification of potential genetic and environmental causes of autism. Myriad problems remain unsolved and untouched.
Many autistic children are medically fragile. They endure physical suffering from gut irregularity (reflux, diarrhea, pain, constipation), insomnia, seizures, adverse reactions to medications and significant allergies.

Track is Part of This Student's Curriculum

William Potts finishes his run during
cross-country workouts.
Sixth grader William Potts was ready to run at Haddonfield Middle School's last cross-country practice, as he has been almost every practice day since September.
The coed team's roster lists 82 participants, but only two to three dozen attend the optional five-day-a-week workouts, coach Maureen Baker said last week.
Will came to almost every one, she said - "maybe he missed one."

Thursday, October 18, 2012

Autistic Tween Duet with Katy Perry


Eleven year-old Jodi DiPiazza was diagnosed with autism right before she turned 2, and her parents feared their daughter would never speak. Not only does Jodi now speak, she has found a voice through music. Her mom says, "Through music and through song, she's making herself known."
Jodi joined voices with pop star Katy Perry and they performed Perry's hit "Firework" as a duet on Comedy Central's "Night of Too Many Stars: America Comes Together for Autism Programs."  Night of Too Many Stars airs Sunday at 8/7 Central.
Check out the video, and maybe have the tissues handy. After a few minutes of introduction about Jodi, what parents went through with her autism diagnosis and how Jodi is thriving, the "Firework" duet begins at 3:11.

Lawmakers Warn of Special Education Cuts

Some 12,000 special education teachers and aides could lose their jobs in the coming months unless Congress acts to stop impending cuts, according to a new report from Congressional Democrats.

Russian Ballerina Teaching Autistic Children

A Russian ballerina is working a little magic with autistic kids.

Isis Aquino,8, a student at the
Brighton Ballet Theater's dance
class for autistic children with
Frances Dodin, an assistant teacher.


She is teaching them to dance. 

Medicaid: Showing We Value People

Great read by a parent of two children with autism and how Medicaid is helping them.

CARY, N.C. -- There’s been a lot of talk about the “moocher” class – those Americans who don’t pay federal income taxes and those who receive some kind of government benefit.
I must confess, I have two moochers living in my house – my sons, Kenny and Theo, ages 13 and 11 respectively.
They both have autism, and they both have cognitive and severe language delays. Because of their disabilities, they receive Medicaid coverage, which pays for speech therapy and occupational therapy as well as their medical care. Medicaid also pays for a service called home and community support, which provides staff who work with the boys on goals like how to make purchases at stores and how to behave appropriately in public.

Read more here: http://www.newsobserver.com/2012/10/17/2418488/medicaid-showing-we-value-lives.html#storylink=cpy

Wednesday, October 17, 2012

Advice on Job Huting for People with Disabilities

In honor of National Disability Employment Awareness Month, this piece from the Friendship Circle's Blog seems appropriate.

Being gainfully employed is akin to finding that elusive needle in the haystack for everyone these days, regardless of disability.
For those of us with disabilities, the added challenge of grasping for a much smaller needle in a much larger haystack is a challenge that often keeps us from knowing how to begin the search.
As every person and every disability is unique, my story and advice may not align exactly with every reader’s puzzle pieces of life, but I hope that my experiences will inspire you to find new ways for the pieces to fall into place.

Autism Researchers Focus on Tangled Role of Genetics

In families that have children with autism, nearly half the risk of getting the brain disorder comes from inheriting an accumulation of common genetic variations from the parents, a new study shows.
The research, being published today in the journal Molecular Autism, showed that in families with only one child with autism, about 40 percent of the risk for the disorder is inherited. In families with two or more children with autism, about 60 percent of the risk is inherited.

The Autism Whisperer of Hawaii

Helene Mann
Take a moment to picture every redhead you have ever seen or met in your life. Got it?
The most recent studies by the state departments of Health and Human Services on autism put the current prevalence of children born with the disorder at one in 88 births, a rate higher than children born with auburn locks (which stands at one in 100).
That means that in next few years you will know more children with autism than ones you can affectionately call “ginger.” The disability has been growing at a double-digit rate since it was first discovered in 1943, when just one in 10,000 children were found to have the condition.

Tuesday, October 16, 2012

SSI Recipients To Get a Raise

Americans with disabilities who receive Social Security benefits — including Supplemental Security Income — will see their monthly payments rise in 2013.
The Social Security Administration said Tuesday that all beneficiaries will get a 1.7 percent increase to account for higher cost-of-living. The automatic payment adjustment known as COLA occurs whenever inflation rises.

Syracuse Seeks Role in Monitoring Abuse

ALBANY — The Cuomo administration is strongly considering a surprise bid from Syracuse University to run a new federally financed nonprofit agency that will monitor treatment of people with developmental disabilities and mental illnesses, according to people involved in the process.
The university’s application, however, is being questioned by some disability advocates. Syracuse is proposing to create a nonprofit group under its auspices that would run the oversight agency, a departure for the university, which is largely known for its research and policy expertise in the field. And while the group is supposed to be independent, the university is proposing to allow one-third of its board members “to be elected with input from the governor.”

Mom Wants Son to Have Chance to Be a Kid

This Modified Life is a column by Jo Ashline for and about the families in Orange County, Calif., living with special needs. Jo is a freelance writer and married mother of two. She writes regularly for OC Moms, the Orange County Register's parenting section.

Exactly one week after turning 2 years old, my son Andrew was diagnosed with autism. Within days of the diagnosis, he was properly enrolled in all of the necessary therapies: physical, occupational and speech. We immediately began implementing an intensive behavioral intervention program and our home quickly became our autism headquarters; our kitchen table permanently littered with research materials promising very little, and our hallway cluttered with therapeutic toys and adaptive equipment.
That was 2004.
I haven’t done the actual math, but I can tell you that my son, who’s now 10, has easily spent thousands of hours outside of a regular school day working hard to acquire communication, self help, and social and academic skills that most of us take for granted. I can’t count the number of naps I had to cut short over the years, begging my bleary-eyed little boy to get up so he could practice brushing his teeth and learn the fundamental basics of imaginative play as a therapist looked on and took data.

Sheriff's Official: Autistic Boy's Therapy Chickens Likely Killed By Animal in Florida

DEBARY, Fla. — An autistic boy's four backyard chickens were most likely killed by an animal, and not in a human attack, a Volusia County sheriff's spokesman said Monday.

Off-Broadway's 'Falling' Rises to Occasion

NEW YORK, N.Y. -- Never mind that tinkly piano score you’ll hear at the start of “Falling.” Far from receiving a mawkish, “Hallmark Hall of Fame” treatment, Deanna Jent’s play is harrowing stuff.
Inspired by her experiences as a mother of an autistic child, this heartfelt and nuanced family drama is shot through with dark humor, as cathartic for the audience as it is for its conflicted characters.

Monday, October 15, 2012

New York Association Of Counties Releases Mandate Relief Suggestions

The New York State Association of Counties has released its latest recommendations to reduce mandated costs on local governments.
The bipartisan association report includes suggestions for relieving local governments of increased Medicaid, education, welfare, pensions and other costs.
In total, there are 40 state-mandated programs - many of which are accompanied by "dozens or even hundreds of pages of regulations and rules" - using local tax dollars.

Disability Advocates Vow to Keep Up Protests Until Governor Meets with Them

HARRISBURG, Penn. -- Angered that Governor Corbett will not meet with them, disability advocates have returned to the Capitol. Many of the demonstrators are Medicaid recipients who say further cuts will force them to live in nursing facilities and institutions.
The activists gathered inside the Capitol Rotunda Monday. Others moved to the hallway outside the Governor's second floor office, closing the ceremonial reception room. Still more went to the offices of the chairmen of the House and Senate Appropriations Committee.

Are Pesticides to Blame for Rise in Autism?

An anti-pesticide manifesto from the Pesticide Action Network North America (PANNA) has recently made a few headlines in big papers and nabbed a feature on an NPR member station with claims that “children today are sicker than they were a generation ago” and that pesticides are a “key driver” of the increase in childhood disorders such as “childhood cancers … autism, birth defects, and asthma.” The news reports almost invariably describe the tome in scientific terms without mentioning that it’s self published and not peer reviewed and contains no new data or information. The stories do not fail, however, to mention autism and to mention it early.

Study: Yoga May Improve Behavior of Autistic Kids

A simple, school-based yoga program can do wonders for kids with autism, researchers say, yielding gains in both behavior and socialization.
In a study comparing children with autism who did yoga each day at school compared to kids who followed a typical routine instead, those who participated in the stretching exercises exhibited significantly less aggressive behavior, social withdrawal and hyperactivity.

Hot Dog Cart Gives Team Taste of Entrepreneurship

A team of nine runs a hot dog cart.
OCALA, Fla. -- When you run a successful hot dog vending business, you truly relish your work. And, that is certainly the case for nine APD customers who collectively run a hot dog cart just outside Goodwill industries on Silver Springs Boulevard in Ocala.Fred Allen, Charlotte Coach, Anthony Dayton, Becky French, Aisha Issa, Michael Jacobie, Josh Lessor, Kerr Sargood and Amy Thompson run the enterprise. Learning how to operate their own business has changed their lives and the lives of everyone around them.

Thursday, October 11, 2012

Family Gets a Reprieve for Son's 'Therapy' Chickens

DEBARY, Fla. — A family's small but technically illegal flock of chickens got a 60-day reprieve from the city's code enforcement board Wednesday night, setting up what's likely to be a community campaign to allow the birds in yards around town.
The biggest reason for the reprieve: 2-year-old J.J. Hart, a boy with autism spectrum disorder who's become attached to his family's chickens since his parents got them earlier this year.

Social Media Helps Teen with Autism Find Voice

TAMPA, Fla. -- Sometimes a picture can be worth a thousand followers too.
Henry Frost outside the Republican
National Convention.
That’s what happened to Henry Frost after he posted a photo to Facebook.
The photo shows 13-year-old Frost sitting on the steps outside a downtown Tampa building with his service dog Denzel. Not shown are the thousands of Republicans who had gathered nearby for the week-long Republican National Convention.
Frost holds a sign. It reads:
“The Civil Rights Act of 1964 granted equal rights to all people. I am a person. I want these rights.”
Frost has autism and a list of related physical problems which have so far eluded a tidy diagnosis. He communicates using an iPad app that speaks what he types.

This Election, a Stark Choice in Health Care

Joyce Beck, who runs a small hospital and network of medical clinics in rural Nebraska, is reluctant to plan for the future until voters decide between President Obama and Mitt Romney. The candidates’ sharply divergent proposals for Medicare, Medicaid and coverage of the uninsured have created too much uncertainty, she explained. 
“We are all on hold, waiting to see what the election brings,” said Ms. Beck, chief executive of Thayer County Health Services in Hebron, Neb. 
When Americans go to the polls next month, they will cast a vote not just for president but for one of two profoundly different visions for the future of the country’s health care system.

Romney Champions Medicaid in Ohio with No Mention of Proposal for Severe Cuts

Feeling a little political this morning, will try to provide a proper balance.

During a rally in Mt. Vernon, Ohio on Wednesday, Mitt Romney touted the benefits of Medicaid and claimed that all Americans will be able to obtain health care insurance without President Obama’s Affordable Care Act.
Responding to a question from a woman whose son suffers from Spina Bifida, Romney disparaged Obama’s health care measure — which would expand access to 30 million Americans — and claimed that the law is unnecessary for people suffering from chronic conditions:
ROMNEY: Actually, we had health care in America before Obamacare came along. And we still have health care in America…Each of us today in America has a choice of the type of health care plan we might choose. People who are poor are able to get Medicaid, which is a government support effort for those who can’t afford to have insurance. And these things aren’t going to disappear without Obamacare.

Wednesday, October 10, 2012

Opinion: Look at the Person, Not the Disability

Peter Ripley
Peter Ripley wrote this column for the Peninsula Daily News. Ripley, 52, has arthrogryposis, a congenital joint disorder that makes him unable to walk. 

 As we commemorate National Disability Employment Awareness Month this month, we need to reflect on far we've come, and still need go, to overcome barriers to employment for the disabled.

My story is about how I overcame adversity, the challenges I was born with ­— and the challenges which were placed on me by others because of underestimation and ignorance of not knowing how to treat someone with a disability in regard to employment.

Colorado's Wait List for Services Too Long

By Tara Kiene, director of case management with Community Connections Inc.

DURANGO, Colo. -- For more than a decade, Colorado has maintained a waiting list for most of its programs for people with developmental disabilities. Before the economic downtown in 2008, this often meant that a person with developmental disabilities who needed support to live as independently as possible in the community would have to wait 10 to 15 years before receiving services. The wait now is indefinite.
The issue is money, or the state’s lack thereof. Although the majority of Colorado programs for people with developmental disabilities is funded by Medicaid, the state has to match dollar for dollar with the federal contribution. During the last 10 years, Colorado has hovered between 46th and 48th in the nation when it comes to funding for developmental disabilities.

Tuesday, October 9, 2012

N.J. Senator Focuses on Relocating Residents

More than 500 disabled individuals will need new homes as the state closes its Totowa and Woodbridge developmental centers over the next five years.

Sen. Loretta Weinberg wants to make sure that in planning for those relocations, the state Division of Developmental Disabilities takes into account lessons learned from earlier developmental center closures.

Toward that end, Weinberg has introduced legislation to require a study of how several hundred former residents of the North Princeton Developmental Center fared after it was closed in 1998.

Today's Special: A Cafe with a Mission of Empowerment

STATEN ISLAND -- Drake takes drink orders, greets regular customers with a warm handshake and sets the tables for the next wave of the lunch crowd. It’s a stark change from the sheepish man who patrons first encountered when Harvest Café opened its doors in the beginning of 2011.
“My goodness, it’s like night and day. You’d see the change in him week by week,” says Jean Ringhoff, a regular at the café who works at a nearby bank. “At first, he barely made eye contact.”
Drake, like the restaurant itself, now commands a second look.
The pale yellow house with the white wrap-around porches serves not only as a fully-operating restaurant, but also as a day habilitation program for people with developmental disabilities.

Opinion: Close Minds Preventing Open Hearts

Powerful piece to share from the Buffalo News.

I wish I had heard about the respite facility for developmentally disabled youths planned for a Town of Tonawanda neighborhood before the neighbors did. Maybe I could have prevented what’s happening. At least I would have tried.

I would have told them not to gather petition signatures to present to the Town Board objecting to the facility under the theory that it will cost tax revenue, increase traffic and compromise the safety of their own children, because all those reasons are a thin facade for the truth that everyone but they care to admit: fear of the unknown.

Study Suggests Autism Less Likely in Poor Families

To reduce risk of autism, it may be important for mothers to give their children enough nutrients like vitamin D, thiamine and riboflavin if they excursively breastfeed their children, according to a new study in Journal of American College of Nutrition.
R.J. Shamberger at King James Medical Laboratory Cleveland, Ohio conducted the study and found mothers who participated in the Women, Infants, and Children (WIC) Program were less likely to have children with autism.

Dance, a Positive Outlet for People with Autism

Jeremy Koven enjoys a hip-hop class.
TOMS RIVER, N.J. -- After a warm-up of jumping jacks and stretches in the bright dance studio at Once Upon a Dance in Toms River, Jeremy Koven, 20, listens attentively as his hip-hop teacher, Lauren “Lolly” White, instructs the class on the new dance combination they’ll be learning that evening, a series of step ball changes, body rolls and brisk arm movements set to popular music.
White praises Koven on his listening skills and mastery of the runner’s stretch, recognition that makes him smile, no matter that the classmates to his left and right are largely girls half his age, or that he is a man with high-functioning autism.
Simply put, “dancing makes me feel good,” the Toms River resident said.

Monday, October 8, 2012

Autism Documentary Winning Hearts, Acclaim

Anton Kharitonov
What is it like to live with autism in Russia? A documentary depicting the daily challenges of an autistic boy over a period of six years is finally due to be released in Russia, a month after it was lauded in Venice where it had its world premiere.
­Anton's Right Here is the brainchild of the prominent Russian critic-turned-filmmaker Lyubov Arkus. Her debut documentary chronicles her relationship with the boy who remains a child regardless of his actual age.
While autism is rising alarmingly throughout the world, the challenges of raising a child in Russia often seem to be next to impossible to cope with, the film's director Arkus soon makes clear.

Study Shows Autistic Children Tend to Stray

When Patrick Murphy was 6, he became obsessed with vacuum cleaners. The boy, who has autism, used to slip out of his house near Buffalo without telling his parents, running to a nearby appliance store or into strangers’ homes to marvel at vacuum cleaners.
Patrick is now 14, and his parents have double bolts on the doors in their home and brackets on their windows. Still, Patrick — who is now focused on dogs — manages to sneak out. Two weeks ago, he crept from the house after his mother went to bed. When his father came home, he alerted the police. They found Patrick running barefoot in his pajamas at 2 a.m., three miles from his home.
“That was very scary,” said Patrick’s father, Brian Murphy, who has now added an alarm system to the house to keep his son safe. “He has broken through brackets, windows, picked locks, you name it. It’s absolutely the most stressful part of parenting a child with autism.”

Budget Cuts and the Meaning of Work

From The Gazette in Cedar Rapids, Iowa. Unfortunately, you can change the names and the location to almost anywhere around the country and find the same thing.

If you don’t have any direct experience with them, it can be hard to understand just how profound an effect Linn County’s recent budget cuts have had on people who rely on Mental Health and Developmental Disability services. That’s why a handful of families are speaking out, specifically about the cut to work programs.
Most of us are taught from childhood that work is an important part of becoming an adult — a source of pride and identity — and developmentally disabled adults in Linn County are no exception. Here are a few of their stories as written by family members:

Sunday, October 7, 2012

Don't Judge People on Their Disability

October is National Disability Awareness Month and National Disability Employment Awareness Month. In a way, it is surprising that we need a proclamation of something so common.
Across all ages, genders, ethnicities and educational levels, about 11.9 percent of the U.S. population reports having a disability. Minnesota and Wisconsin have slightly lower levels, with 9.8 percent and 10.7 percent respectively.
The percentage of people with a disability grows as we age. Fewer than 1 percent of those younger than 4 have a disability. In the 75-and-older group, 50 percent of us have a disability. The origins of acquired disabilities are diverse, including illness and military service. With the appreciative rise in those diagnosed with autism spectrum disorder, the percentages may well be changing.

Autism-Friendly 'Lion King' Gets Rave Reviews

NEW YORK, N.Y. -- Tickets to the Sept. 30 autism-friendly performance of “The Lion King” sold out in a day.
Cheryl Squires, a refreshingly no-nonsense Queens school teacher whose 10-year-old son Geoffrey has autism, said she bought seats the minute they were available because there’d be “no staring and no judgments” at the theater.
When the hit Disney show was over, she added, “We made friends with the parents and children sitting around us.”

N.J. Military Families Stung by Loss of Program

Denise Bard with her children Delaney
and Carson.
DELRAN, N.J. — As the wife of a senior master sergeant in the Air Force who is frequently deployed around the world, Denise Bard said she sometimes feels like "a single mother with a marriage license."
But when their son was diagnosed with autism and their daughter with a number of chronic illnesses, the Delran mother of two quickly realized that with her husband, Charlie, away from home so often, she couldn’t handle the responsibilities by herself.

Saturday, October 6, 2012

Disabilities and the Presidential Debates

You may have missed it in all the post-debate chatter, but the issue of disabilities as part of the national domestic agenda came up not once but twice during Wednesday’s night debate, both times by President Obama. This is a pretty big deal, as every possible issue/cause wants to get in a mention during a presidential debate with 60 million viewers. With so many worthy topics out there competing for attention, I was happy to hear that the D-word had made the cut even if there were criticisms of how Obama framed the issue

Ex-Walmart Worker with Disabilities Sues Store

The nation's largest retailer, Walmart, is facing a laundry list of allegations in a lawsuit stemming from the sexual abuse of a woman with developmental disabilities by her 72-year-old co-worker, who later pleaded guilty to "gross sexual imposition."

21, Autistic and Having a Party

From NYTimes.com Motherlode parenting blog.

For his 21st birthday, my son received cards from friends, relatives and a favorite elementary-school teacher, yet few of these well wishes were printed with his age. In searching out my own card for him, I soon learned why. Tag lines that start, “So you’re 21?’ ” often end with instructions to go out and tie one on; as my son is on the autism spectrum, such advice would have been in dubious taste. Yet as much as I appreciated the senders’ thoughtfulness, I found myself thinking: another difference. Again.

Friday, October 5, 2012

Pennsylvania Shelves Plan to Raise Co-Pays for Children with Disabilities on Medicaid

Gov. Tom Corbett’s administration Friday shelved a plan to require thousands of families that get Medicaid coverage for children with autism and other disabilities to help pay the bills after complaints from parents and legislators.
Proposed copayments for wealthier families that had provoked criticism from many parents were put on indefinite hold while officials instead work to win federal approval for a new premium that would be paid upfront, Public Welfare Secretary Gary Alexander said.

Opinion: My Son and the City

 From NYTimes.com's Opinionater by Marie Myung-OK Lee


When my husband and I began mentioning to friends and family that we were thinking about moving from Providence, R.I., to New York City, everyone’s first question was not about what career opportunities awaited us or which borough we wanted to live in, but: “What about J?”
J, our 12-year-old son, has serious medical challenges and developmental disabilities, autism among them. He’s prone to violent tantrums that can be triggered by something as simple as catching sight of a dog 100 feet away, which makes our everyday life often messy, always unpredictable. But in Providence, we had the help of in-home aides and respite care provided by Medicaid, as well as a close-knit group of friends. Whenever we had an emergency, there were plenty of people to call. Whenever J had a meltdown, we could just jump in the car and go home. What would this scenario look like in New York?

Bullying Is a Weapon of Mass Destruction

From Huffington Post's Stuart Chaifetz.

"Have a good day at school."
Such an innocent, innocuous phrase, yet last year when I said that to my son, Akian, when the school bus arrived in the morning, it sent him into a spiraling panic. I would later learn that his pained reaction was merely the exposed wick of the candle -- a manifestation of a greater crisis whose origins were, until I sent him to school with an audio recorder in his pocket, buried beneath the surface and invisible to me.

Experts Brace for Wave of Autistic Adults

Guido Abenes
BERKLEY, Calif. -- Guido Abenes appreciates their concern, but he'd really like his parents to stop worrying about him.
He's 25, he says, and he's doing fine. But he's also autistic, part of the generation of young adults who were born during the first big wave of autism cases in the United States two decades ago and are now struggling to strike out on their own.
"I tell them sometimes, 'Stop it, I'm doing things, I'm resourceful,' " said Abenes, who is a student at Cal State East Bay. "They're getting the message, I think. But they still worry."

Video of Autistic Child in China Being Beaten Provokes Internet Outrage

This is so disturbing . "Jaime's China" is a weekly column about Chinese society and politics. Jaime FlorCruz has lived and worked in China since 1971. 

BEIJING -- Even a grainy three-month-old video clip can stir up a controversy.
A closed-circuit television clip, posted and shared on Chinese social media and reported by the local press this week, has triggered sympathy and outrage here in China.

Thursday, October 4, 2012

Feds Approve N.J. Medicaid Waiver

TRENTON — New Jersey would have more freedom to spend money to keep senior citizens and people with developmental disabilities living at home and out of institutions under a revised Medicaid program the Obama administration approved Wednesday.
Three Christie administration cabinet members Thursday morning outlined the much-anticipated “comprehensive Medicaid waiver” that will give the state more flexibility in how the $10 billion state and federally funded program serves more than 1 million poor, disabled and elderly people, and supports hospitals.

Autistic Ballerina, 10, a YouTube Sensation


Clara Berg at her home.
TORONTO -- Her thin, delicate arms arced gracefully above her head, 10-year-old Clara Bergs points her ballet-slippered toes then lowers herself to one knee, grinning.
She’s watching the end of a taped performance of the ballet Coppélia, and as the video audience applauds, Clara mimics the ballerinas’ elegant movements and bows to her own adoring fans: stuffed animals set up along the couch.
“She really loves an audience,” says Clara’s mom, Lisa Anderson.
Until last week, that audience was whoever was gathered in Clara’s downtown Toronto home. Now, the autistic girl who dances despite physical and developmental disabilities has hundreds of thousands of fans all over the world.

Making Children Accepting of the Disabled


How do you talk to kids about others whom they perceive as being different?
Instead of sitting still in their religious school classrooms Sunday, the children of Congregation B'nai Tzedek participated in a morning-long series of interactive simulations of challenges people with special needs face every day at a disability awareness event entitled "Spread Over Us Your Sukkah."

DNA Scans Help Pinpoint Causes of Mental Retardation

Sequencing the genomes of 100 individuals with mental retardation with no known cause yielded genetic answers for 16 of them, a study found, suggesting the technique may help diagnose and aid in treatment.
While more than 400 genetic mutations are known to cause intellectual disability, they are responsible for less than half of the cases, said Han Brunner, a study author and head of human genetics at Radboud University Nijmegen Medical Centre in the Netherlands. The research is published today in the New England Journal of Medicine.
The study shows how gene sequencing can improve diagnosis in patients with mental disabilities, many of whom never learn the cause. Knowing the genetic origin can help patients and families understand the prognoses and may lead to specific treatment options, the authors said in the study.

Initiative Focuses on Educating Disabled Voters


If the approximately 11,000 county residents with disabilities turn out at the polls, David Long figures elected officials and candidates will take notice.
"I really believe that if the people with disabilities in Washington County would get out and register to vote, and they actually do go out and vote ... it will grab the attention locally," said Long, an adviser to People First of Washington County, an initiative of the county board of developmental disabilities to advocate for disabled individuals.

Wednesday, October 3, 2012

The Joy Just Comes Out for This Band

Thomas McClure plays air guitar as he
fronts the Voices of the Village band
during a recent performance.
ARLINGTON, Wash. — He has the moves of his hero, Johnny Cash. The sweeping turn with his right arm. A little smile as he points at the audience.
Some who've watched Corey Anderson, 26, could easily believe he is playing that guitar.
He isn't.
As Anderson strums, the actual music comes from Jon Dalgarn, a professional musician who has his gear — electric guitar, drum machine, a small P.A. system — set up in the back of the Arlington United Church social hall.

States Drastically Cut Medicaid Dental Care

WASHINGTON -- Facing tough fiscal times, states across the country are cutting a vitally important, but often overlooked, area of medical insurance for their low-income residents: dental care.
The cuts have left many poor people with few options to pay for services such as teeth cleanings, fillings and dentures. States that have recently slashed funding for adult dental coverage include Pennsylvania, Massachusetts, Illinois, California and Washington.

Tuesday, October 2, 2012

A Battle That Can't Be Won: Cure for Autism vs. Neurodiversity

An amazing blog post by Tim Villegas of thinkinclusive.us. Where you you stand?

I did something I slightly regret. I joined in the fight for a battle that can’t be won.
This is the battle between those who advocate  for a “cure” for autism and those who are offended by the term’s very existence.
To be honest…I have spent enough energy “debating” this on Twitter (not such a good forum for real discussion) so I thought I would put some thoughts out in the blogosphere. I am not autistic, nor do I have a disability. I am what people in the neurodiversity community call “neurotypical” (NT ). But I am a stakeholder. I have been a teacher for students with severe disabilities for close to a decade…which included time working exclusively with students with autism (most of which were non-verbal). I also have close relatives who have autism and other intellectual disabilities.