Sunday, June 30, 2013

Changes in How Disabled Are Treated

As a child in orthopedic schools in the 1950s, I clearly remember other disabled children being tackled or held down by teachers.I never forgot the embarrassment or the anger I felt in those moments. I found a former teacher from Leland School for Crippled Children where I attended and asked her decades after these events occurred why this was done.“I guess, Jerry, we didn’t know any better,” she said.

Friday, June 28, 2013

Club Blocks Family with Autistic Child

ELLINGTON, Conn. — An apology came from a country club in Ellington after a local mom claims the club turned her autistic son away from swimming simply because she wanted the child to wear a safety vest.
Their policy is that no flotation devices are allowed, but the club's president told Eyewitness News they're sorry for any miscommunication.

Thursday, June 27, 2013

Building Networks for a 'Good Life,' Even After the Caregiver Is Gone

This article is so on target it's not funny. A must read.
Twenty-five years ago, when Ted Kuntz, a family therapist in Vancouver, British Columbia, was preparing his will, he went around to family members and close friends asking if — in the event of his and his wife’s death — they would be willing to serve as a guardian for their son Josh, now 28, who has a severe cognitive disability and requires continual care. “Everybody said no,” recalled Kuntz. “They said the responsibility was too overwhelming, and they couldn’t imagine taking it on.”
Ted Kuntz, left, and his son, Josh.
As a young boy, Josh had frequent uncontrollable seizures. Life grew increasingly stressful, Kuntz recalled, and the family became isolated. “We were in crisis,” he said. “My wife quit her job and became a full-time caregiver for Josh. We were holding our breath constantly; people avoided us because we were angry; our family got worn out by the level of despair and pain we were feeling.”

Opinion: California Must Do Better

While I have certainly made known my opinion about how badly off-target government expenditures and programs are, my eyes were really opened this year while working on the state budget and specifically, programs serving our most vulnerable population -- Californians with developmental disabilities. To me, this issue serves as a representative microcosm of just how wrong and dangerous government "solutions" can be.
The good news here is that people with developmental disabilities -- autism, intellectual disability, epilepsy, cerebral palsy and others -- enjoy bipartisan empathy. However, I have learned that our visions for supporting this population are radically different, with the Democrats' and Gov. Jerry Brown's plan resulting in millions of wasted taxpayer dollars and the placing of this population in serious harm's way.

Wednesday, June 26, 2013

Study: Charters Edge Neighborhood Schools in Special Education

As charter schools continue to proliferate across the country, a new study finds that they are offering benefits for students with disabilities.
In a report out this week, the Center for Research on Education Outcomes at Stanford University compared the performance of students at charters with that of students attending traditional public schools in 25 states, the District of Columbia and in New York City. The analysis is an update to a similar report issued in 2009.

Tuesday, June 25, 2013

Justin Bieber Makes Wish Reality For Fan With Down Syndrome

An 8-year-old with Down syndrome got to live out her dream, scoring a meeting with pop star Justin Bieber.
Marisa Cox has Down syndrome and recently underwent a kidney transplant.

During her many hospital stays, her mother told FOX5 San Diego that watching videos of Bieber and listening to his music appeared to speed the girl’s recovery.

Born with cerebral palsy, but determined to triumph

For Jesse Martinez— a 19-year-old with cerebral palsy— his struggles are more than meets the eye. And his latest accomplishment means more than anyone could fathom.
On June 15, Martinez graduated with high ranks from South San Antonio High School and stunned the crowd when he walked to accept his diploma.
“When I crossed I felt as if I died and went to heaven because it felt amazing,” Martinez said. “I’ve always told myself one day, the world is going to know who I am and for me, this was the perfect way to put myself out there.”

Joe's Table, a Coffee Shop with a Difference

In a region fuelled by caffeine, a coffee shop with a difference has opened on Kingsway in Burnaby.

Joe's Table Cafe was founded by Peter and Stephanie Chung in memory of their son Joseph, a 32-year-old with autism and epilepsy who died last September in a swimming accident.
The café goes the extra distance to provide work for people with developmental disabilities.

Monday, June 24, 2013

Preschool Autism Program Enlists Classmates to Help Teach Social Skills

A preschool classroom which mixes
 typically-developing children with
others on the autism spectrum.
Being polite, taking turns, and the like can be difficult for many preschoolers, but even more so for students with autistic spectrum disorders.
One fledgling early-childhood initiative is finding that getting classmates involved in helping autistic students can help boost the social skills of all children in the classroom.

Sunday, June 23, 2013

'A Special Friend' Describes Perspective of Children with Disabilities

Many children without disabilities often ask why some of their classmates are ''different.''
A special education teacher created a book that helps children understand each other.
"A Special Friend" is a book written in the point of view of a child with a disability. It enables parents and teachers to explain why they may be "different." Laura Matuszewski's book "A Special Friend" is on the shelves at Anderson's Bookshop in Naperville. Laura is a special education teacher in the Lake Zurich school district.

Friday, June 21, 2013

Pope Francis invites boy with Down Syndrome for a ride on the Popemobile

 Pope Francis has given a 17-year-old boy with Down Syndrome the ride of his life – sort of. Francis invited Alberto di Tullio up onto his open-top Mercedes at the end of his general audience Wednesday, letting him spin around on the pontiff's white chair while tens of thousands of people looked on.

Exploring Career Option and Experiencing Taste of College

UTICA, N.Y. — Ten students will soon start their professional careers after completing the two-year certificate program, CollegeWorks offered at Mohawk Valley Community College.
The program is a collaboration between MVCC and the Arc, Oneida-Lewis Chapter to develop and improve post high school employment outcomes for people with developmental disabilities, while providing the experience of attending college.

Thursday, June 20, 2013

Years After High School, It's Prom Night

So proud of our staff in New Jersey and Rockland County for creating a prom for more than 100 of our guys. 

Even without glass slippers and horse-drawn carriages, last week’s first ever Westwood-based prom for the developmentally disabled would have been enough to make Cinderella swoon.
Afrah Nyatome, a NIPD/NJ staff
member, joins Christopher Bovee at
the prom.

"When talking to our clients about past life experiences, quite a few of them expressed sadness at never being able to go to prom when they were in high school," said Afrah Nyatome, an assistant supervisor at the Westwood supervised apartments for NIPD-NJ.

Wednesday, June 19, 2013

Editorial: Frederick County's Silence Cannot Be Last Word on Two Deaths

In response to the outcry that followed Robert Ethan Saylor’s fatal encounter with off-duty deputies in Frederick County, Sheriff Charles A. Jenkins promised “that this agency is transparent and that all the facts will be presented when the investigations are completed.” But the public is still in the dark about how the refusal of this young man to leave a movie theater could end in his death. Now come troubling details about the department’s handling of another incident that also resulted in death. It’s enough to make one wonder who exactly is being protected in Frederick County and whether it’s time for an independent look by outside agencies. The circumstances of the two cases, occurring within days of each other in January, vary greatly, but each raises issues of whether these fatalities could have been avoided had authorities acted differently.

Study: Air Pollution Linked to Autism

Pregnant women who were exposed to high levels of air pollution were twice as likely to have a child with autism as women who lived in low pollution areas, a Harvard University study said on Tuesday.

According to researchers, this is the first large national study to examine links between the prevalence of pollution and the development of the developmental disorder.

Tuesday, June 18, 2013

Top 10 iPad Apps for Special Ed

The iPad takeover of public education isn’t just confined to the mainstream classroom: Special needs educators, too, are finding that iPads can be a vital tool to support independence. What sets the iPad apart from other devices is the simple and visually robust user interface that can be used by almost everyone. It’s also a highly customizable device that can be set up with applications and features to support a variety of special needs.
With nearly a million apps in the iTunes App Store, identifying effective apps is often an overwhelming task for educators.

Young Adults with Autism Struggle with Isolation, Study Finds

Tossing a high school graduation cap into the air typically signals the launch of a bigger life. But for many young adults with autism, summer after senior year is when the world begins to narrow.
Lacking the structure high school provides, they too often fall into isolation. Too much unscheduled time can produce anxiety, leading to reclusive routines, according to Sharon Spurlock, who’s worked with people with developmental disabilities for more than 30 years.

Monday, June 17, 2013

Minority Children with Autism Lacking Access to Specialists, Study Finds

African-American and Hispanic children are far less likely to be seen by specialists - for autism, but also other medical conditions - and also less likely to receive specialized medical tests than their white peers, according to a new study published Monday in the journal Pediatrics.Dr. Sarahbeth Broder-Fingert and colleagues studied the records of 3,615 children with autism at the Massachusetts General Hospital,  specifically looking at the rates of both referral to specialists and medical tests undertaken.  They discovered that children from African-American and Hispanic families were far less likely to receive specialized care or specific medical tests such as a sleep study, colonoscopy, or endoscopy.

Battle Lines Drawn in Va. Medicaid Overhaul

RICHMOND, Va. -- The battle lines are drawn over a major overhaul of Virginia’s Medicaid program that could lead to expanding coverage to hundreds of thousands of uninsured Virginians.The Virginia Medicaid Innovation and Reform Commission will meet for the first time Monday to review a three-phased plan of reforms outlined in amendments to the state budget that will take effect July 1.

Friday, June 14, 2013

Report: District Coming up Short

A court-ordered report shows that the District fails to properly serve some of its developmentally disabled residents.For more than three decades, the city has failed to fully comply with a court ruling that found that D.C. violated the rights of some of the city's institutionalized, developmentally disabled residents' rights to be free from harm and to be given necessary support.In an attempt to assess the District's progress, the report reviewed the city's performance and found a number of problems.

Cuomo Agrees Not to Lower Pay Rates to Service Providers

ALBANY — Faced with lingering concerns about one of the most contentious elements of the current state budget, Gov. Andrew M. Cuomo has acquiesced to legislation that would protect nonprofit organizations that provide services for people with developmental disabilities from possible cuts to their reimbursement rates.The state budget approved in late March included a $90 million cut to the Office for People With Developmental Disabilities, but the new deal reached between Mr. Cuomo and lawmakers will ensure that if the state cannot generate enough administrative savings and other efficiencies to avoid reducing payment rates to providers, part of the budget cut will be rolled back

Feds, Rhode Island Reach Settlement

PROVIDENCE, R.I. — The federal government has reached a settlement with Rhode Island and the city of Providence for violating the rights of the disabled by segregating them at a vocational school and an employment program where they were "robbed of years of productivity," a Justice Department official said Thursday.

Thursday, June 13, 2013

Providence Rights Violation Probe Expected

PROVIDENCE, R.I. (AP) — Federal, state and Providence officials plan to make an announcement about an investigation into programs for the disabled that the U.S. Department of Justice says violated their rights.

Social Impact Bonds: A Different Way of Funding Critical Services

Goldman Sachs is making its second foray into an experimental method of financing social services, lending up to $4.6 million for a childhood education program in Salt Lake City.
This “social impact bond,” in which Goldman stands to make money if the program is successful but will lose its investment if it fails, will support a preschool program intended to reduce the need for special education and remedial services. The upshot, in theory, is that taxpayers will not have to bear the upfront cost of the program.

Wednesday, June 12, 2013

Leadership Lessons From a Child with Autism

I have been leading people since I was a 16-year-old in high school working at a restaurant in the town where I grew up. Leadership has always been a passion for me and after years of study, reading dozens of leadership books, listening to mentors and accumulating great experience on the way to a successful career I have come to understand one thing: I can still learn something new about leadership. In my case, one of the best sources of ongoing leadership lessons is my 15-year-old son who has high functioning autism.
With roughly 1 in 88 children diagnosed with autism today, it is likely you have parents in your extended circle of family and friends who are raising a child on the autistic spectrum. For clarification and perhaps education purposes, you should be aware that people suffering from autistic spectrum disorder will always present differently. These wonderful people are all unique and their symptoms can range from very low-functioning and non-verbal to very bright and verbal. A disorder that includes such a broad and varied range of symptoms is often called a spectrum disorder; hence the term "autism spectrum disorder." The most significant and commonly shared symptom is in the area of social communication, which includes challenges with direct eye contact, normal conversation, communicating ideas, empathy and reading facial expressions or social cues.

Tuesday, June 11, 2013

Warehoused: Nova Scotians with Disabilities Face a Housing Crisis

From Huffington Post Canada - an in-depth look at Nova Scotia’s system to provide housing for persons with intellectual disabilities which is overburdened and bureaucratic as governments keep promising to fix it. As journalism students in the investigative workshop at the University of King’s College discovered, our most vulnerable citizens are essentially warehoused.
Penny Kitchen
Nancy Walker’s partner had never seen her so upset. She had cried through the entire meeting with her son’s social worker, and would continue to cry “pretty much for the whole year. Every single day.”
This isn’t what she’d wanted. This isn’t what she’d wanted at all.
Ben James, her 19-year-old boy-becoming-man, had severe autism. He
Paul Gilllis
was in public school and had improved his communication by using picture-and-words systems and new technologies available for autistic people on iPods. He loved swimming, went bowling once a week and thrived at his recycling centre job.Walker had dreams for him.
But James could be violent. The six-foot-two, 230-pound teenager’s kicks, scratches, bites and head butts were nearly always aimed at his mother. Despite the stronghold that was his bedroom – reinforced walls, double studding, a Plexiglas window and a steel door – Walker still had to find ways of avoiding her son’s demands, and physical outbursts when they weren’t met.

Monday, June 10, 2013

In Autism, the Importance of the Gut

Michael, an autistic boy living in New York City, started scratching and picking at his face when he was about seven years old. Before long, he was gnawing on the side of his thumb. Along the bottom of his stomach, he tore cuts so deep that they scarred.
Over the next five years, a series of psychiatrists prescribed psychotropic medications to correct the self-mutilation. But nothing seemed to help. By age 12, he'd been taken out of school because he was a constant disruption. Though his parents wanted him to live at home, they decided he could be better cared for in a residential facility.
As they prepared to move Michael to the group home, his family was referred to Dr. Kara Margolis. Margolis, 36, is a pediatric gastroenterologist at New York Presbyterian Hospital and a researcher at Columbia University Medical Center. She speaks with contagious enthusiasm and the slightest hint of a Brooklyn accent. By the time she met Michael, bloody scabs dotted his face, from the tender skin below his eyes to the tips of his ears. He'd chewed his thumb down nearly to the bone. There was blood everywhere, Margolis recalls as she describes their first visit. He screamed and paced the room throughout the brief exam.

Lack of Support for Army of Care-Takers

From across the Pond.

A hidden army of unpaid carers in the Westcountry is being woefully failed by a lack of support according to a new report which warns of devastating consequences.
The region is estimated as being home to between 180,000 and 570,000 carers with many looking after frail or elderly relatives or disabled children every hour of every day.
But despite the fact they save taxpayers billions of pounds every year, they suffer in silence as their needs go ignored.

Meditation Can Provide Perspective to Parents of Children with Special Needs

From Huffington Post's Eden Kozlowski, Founder and CEO of Just Be Meditation.
I am the mother of a child with special needs. My daughter is 11 and was born with her brain's prefrontal lobe not fully developed. The condition is called pachygyria. If you Google it (which is the first thing I did when we were given our official diagnosis), you will be presented with a stifling litany of sites professing the medical challenges and potentially dire possibilities.
The current reality for my daughter: She is physically agile but has fairly extensive learning delays and mood highs/lows... and, at this point, we are seizure-free.
Now, on the other side of my life, I am a long-term practitioner and teacher of meditation and mindfulness. With all of the challenges presented with my daughter, I can honestly say that this practice has been my saving grace. I've had periods of anger and deep frustration but never to the point of sheer depression or hopelessness. Every time I felt like I was at a point of no return, it always pulled me forward with new direction, hope and perspective.

Sunday, June 9, 2013

'Look at Me'

From Age of Autism Contributing Editor Cathy Jameson.

“Look at me!
Look at me!
Look at me NOW!
It is fun to have fun
But you have to know how.” –Cat in the Hat by Dr. Seuss

Ronan has loved his Dr. Seuss books for several years now. He really enjoys ‘The Cat in the Hat’ and ‘Green Eggs and Ham’. Flipping back and forth to his favorite pages, he hands us his books so we can read aloud to him. Since he loves the books so much, I’ve memorized several of the pages. To Ronan’s delight, I offer these silly sentences to him at random times of the day.  Ronan’s siblings do a really good job at keeping Ronan engaged too.  Big Sis adds silly sounds and acts out certain scenes. Little Buddy offers goofy expressions at the really funny pages while pointing to the words he’s reading. Ronan’s little sisters wait patiently to see the pictures while Ronan eagerly looks for his next favorite part of the story. 
Ronan’s been thumbing through, scanning and reading books for several years now. We have multiple copies and other Dr. Seuss media—board books, apps for the iPad, DVDs, flip books and have bookmarked favorite youtube videos. I love that while I read aloud, Ronan is able to fill in many of the words. It’s not verbal language yet, so he signs everything to me.  

Friday, June 7, 2013

How High-Tech Jobs Could Solve Autism Unemployment Crisis

Since getting his first Game Boy at five years old, Aaron Winston knew he wanted to work in the gaming industry. But as he got older, the prospect seemed less and less likely: Winston, who is autistic, enrolled in community college but never made it to his first day of classes. "The social environment scared me off," he told The Verge. "I was too nervous.
Aaron Winston on the job.
Three years later, however, Winston is thriving as a staff programmer at the nonPareil Institute in Dallas, TX. His first game, Space Ape, is available on iOS and Android, and Winston now looks forward to a future in the industry. "This is the right environment for me, and I want to stay at nonPareil for years," he said. "They gave me a career."

An Experimental Drug's Bitter End

Holly Usrey-Roos will never forget when her son, Parker, then 10, accidentally broke a drinking glass and said, “I’m sorry, Mom. I love you.”
Holly Usrey-Roos, right, with
Parker, 14, and Allison, 10
. Both have fragile X syndrome
It was the first time she had ever heard her son say he loved her — or say much of anything for that matter. Parker, now 14, has fragile X syndrome, which causes intellectual disability and autistic behavior.Ms. Usrey-Roos is certain that Parker’s new verbal ability resulted from an experimental drug he was taking in a clinical trial, and has continued to take for three years since then. She said she no longer had to wear sweaters to cover up the bruises on her arms she used to get from Parker hitting or biting her.
Now, however, the drug is being taken away

Thursday, June 6, 2013

Future of Habilitative Services Uncertain Under Affordable Care Act

Despite their inclusion as essential health benefits, habilitative services face an uncertain future under the Affordable Care Act, according to a new analysis done at the George Washington University School of Public Health and Health Services (SPHHS).
Many parents of children with developmental disabilities have trouble getting insurance coverage for habilitative services which can help their children keep, learn or improve their skills and daily functioning. The new analysis, by Sara Rosenbaum, JD, the Harold and Jane Hirsh Professor of Health Law and Policy at SPHHS, finds that considerable ambiguity regarding the scope and extent of coverage can be expected as a result of the initial implementation of the health reform law.

Wednesday, June 5, 2013

Embracing Neurodiversity, Some Employers Seek Workers with Autism

Some call it neurological diversity, others see it as autism's fight back. People diagnosed as "on the spectrum" are suddenly in demand by employers seeking a competitive advantage from autistic workers more used to being considered disabled than special.
Expressing a belief that "innovation comes from the edges", German computer software giant SAP last month launched a recruitment drive to attract people with autism to join it as software testers.
A week later, U.S. home financing firm Freddie Mac advertised a second round of paid internships aimed specifically at autistic students or new graduates.

Tuesday, June 4, 2013

Special Needs Students Teach Others About Assistive Technologies

For many special education students in New York City, this school year was the first time they were integrated into general education classrooms. The move is part of city reform efforts in special education that call for more mixed classes of disabled and nondisabled students in public schools.
With limited speech and mobility,
eighth-grader Thomas Ellenson
relies on his iPad to write, work out
math problems and communicate
with classmates. 
To make that inclusion work, students like senior Abraham Axler are calling for a greater understanding of assistive technologies for students with disabilities.

One Mom's Tips for Armchair Advocacy

Interesting article by Cathy Jameson, a Contributing Editor for Age of Autism. Great tips for anyone involved in advocacy.

We have questions.  Our Congressman should be able to us get answers.  In a perfect world, all of our question asking will have paid off and the truth revealed.  The truth, especially as how it relates to vaccines and autism, has been hard to get.  Many of us have gone round and round locally with our doctors, special education departments and state government agencies while working tirelessly to heal our children.  Yes, it’s been tiring; but, it’s time to think bigger.  It’s time to get the attention of our nation’s leaders—those people who have promised to work for us.  

With a few politicians at our disposal, especially those who attended the 2013 AutismOne Congressional Panel last weekend, keeping their attention is important now more than ever.  Before you shy away in a corner thinking you have no experience dabbling in politics, getting the attention of our government leaders isn’t as hard as it sounds.  It, just like so many things you’ve already done, is just a quick Google search away.  I’ll prove it.  

Autism Focus of New Legal Center

Autism Speaks plans to announce Tuesday that it will form the new center with an eye toward helping establish key legal precedents for this growing population.
First on the agenda will be ensuring that autism insurance laws passed in many states in recent years are implemented appropriately, organizers said. Ultimately, however, plans call for the center to address everything from housing to employment to criminal and family law issues as they relate to autism.

Hyperactive Brain Cells Linked to Autism

Networks of neurons were found to be firing in a highly synchronized and seemingly unrelenting fashion, even through sleep, in the brains of juvenile mice that have a genetic abnormality similar to one that causes mental retardation and autism symptoms in humans, according to the research published online Monday in Nature Neuroscience.

Monday, June 3, 2013

How a Special Ed Student Changed His Life and Found Success

Seven years ago, when I first wrote about Paula Lazor’s teenage son, John, his future was uncertain. The headline read: “Bright, But Falls Asleep in Class.”
Educators at public and private schools had helped John for years with his learning disabilities. But homework was still torture, and he had trouble following what teachers said. The nodding off in class had begun in eighth grade.John became interested in welding after watching the Jesse James reality show “Monster Garage.” The Arlington County school system’s career center had an automobile repair course that seemed perfect. Then he bumped into one of those inexplicable rules that special-education families know too well: Students with learning disabilities, he was told, were not eligible for the course.

The Global Plight of Disabled Children

From Sunday's edition of The New York Times.

A United Nations report, “The State of the World’s Children,”underscores the moral bankruptcy of Senate Republicans who blocked ratification of a treaty to help disabled people around the world. There is scant data on how many children have such disabilities or how their lives are affected. One outdated estimate is that some 93 million children, one in 20 of those 14 or younger, live with a moderate or severe disability of some kind. The issue is how they might be helped to overcome their disabilities and become productive members of their societies.

Definitions Change but Schools Not Expected to See Immediate Impact

The psychiatry profession's newly revised reference manual on mental disorders changes the definition and classification for many disabilities commonly seen in schools, but those changes—at times extensive—are unlikely to have an immediate impact on services for students with disabilities, special education experts say.
The reason: Schools are guided primarily by the federal Individuals with Disabilities Education Act, which offers its own definitions for disabilities, such as specific learning disorder and autism spectrum disorder, that can trigger the provision of special education services.

Sunday, June 2, 2013

N.J. Families Rush to Apply for Medicaid to Maintain Services

TRENTON — The letter started arriving in mailboxes in early February, and the panic has yet to subside.
Our records indicate that you are not currently Medicaid eligible and thus, may be in jeopardy of losing your services,” according to the letter 4,400 parents and guardians of people with developmental disabilities received from the state Department of Human Services.
It said they must apply for Medicaid by March 23 if they wanted health care, housing, and vocational, therapeutic, respite and other services in the future.