Finding the 'Why' Behind Rising Autism Rate

Catherine Lord is the director of the Center for Autism and the Developing Brain, a subsidiary of Weill Cornell Medical College and New York Presbyterian Hospital. She wrote this piece for CNN.com.

This week, the Centers for Disease Control and Prevention released its newest study on the rate of autism among 8-year-olds, showing that 1 in 88 has some form of the disorder. Previously, it was 1 in 110. Does the new figure indicate that we are seeing an epidemic of autism, as some have speculated?

At this point, it's not clear.

One possibility is that we are seeing the result of better detection rather than a real surge in autism.

Catherine Lord

However, there are some striking parts about the study, which used data from 2008 collected in 14 sites across the United States. The rate of autism increased by more than 45% from 2002 to 2008 in numerous sites. It was a larger and more consistent increase than from 2002 to 2006. Also intriguing is that the increase was very uneven in terms of geography, gender, race and ethnicity.

Ruling Could Impact Those with Disabilities

RALEIGH, N.C. -- A ruling by a federal District Court judge could have statewide implications for North Carolina residents affected by developmental disabilities.
Judge Louise Flanagan said Thursday that a managed-care organization, Piedmont Behavioral Healthcare (PBH), did not properly alert about 700 residents about significant changes to the services they would receive.
The N.C. Department of Health and Human Services was listed as a defendant because it oversees PBH and other managed-care organizations.

Added Value in Your Morning Cup of Coffee

Dale Dickerson puts his name
on packages he will fill.

PORTLAND, Ore. -- The Happy Cup Coffee Company is more than just a coffee roaster. The beans they roast have been ethically traded, meaning the farmers who harvested them were fairly paid.
But Happy Cup's mission is to employ some of Portland's developmentally disabled adults and provide them with not only a safe and productive working environment, but also something they aren't always used to receiving: a competitive wage.

Autism Costs Soar to $137 Billion a Year

Autism is costing society $137 billion annually, according to new estimates that suggest a three-fold increase in less than a decade.
The figure comes from preliminary findings of a new analysis of the economic impact of autism. The results of the Autism Speaks-funded study are expected to be presented Saturday at a conference in Hong Kong.

Rising Rates of Autism: Advice for Parents

With a new government report showing a continuing surge in autism rates -- 1 in 88 children have been diagnosed with autism or a related condition -- parents may be wondering how to spot the signs in their own child and when to seek professional help.
Babies can start showing signs of autism as early as 12 months. “At that age, we want to see them initiating social interactions with other people, laughing easily without being tickled, smiling, gesturing, babbling, making eye contact,” said Dr. Rebecca Landa, director of the Kennedy Krieger Institute’s Center for Autism and Related Disorders in Baltimore. “When those social interactions aren’t present, that’s a red flag.”
Her research suggests that about half of children with autism start showing clear enough signs to be identified before their first birthday.

CDC Ups Autism Data to 1 in 88 Children

The number of children with autism in the United States continues to rise, according to a new report released Thursday by the Centers for Disease Control and Prevention. The latest data estimate that 1 in 88 American children has some form of autism spectrum disorder. That's a 78% increase compared to a decade ago, according to the report.

Since 2000, the CDC has based its autism estimates on surveillance reports from its Autism and Developmental Disabilities Monitoring Network. Every two years, researchers count how many 8-year-olds have autism in about a dozen communities across the nation. (The number of sites ranges from six to 14 over the years, depending on the available funding in a given year.)

Therapy on Ice

Jack, No. 42, on the ice.

A wonderful first-person article by Jean Winegardner of The Washington Times.

SILVER SPRING, Md. -- There are less than two minutes left on the clock in this, the final tournament game for one Maryland hockey team. The coach takes a player -- number 42 -- and positions him in front of the opposing team's net. He raps his stick on the ice, then raises it in the air to signal to the coach at the other end of the ice that the puck needs to meet this player's stick.
The coach gets the opposing goalie's attention and gestures at number 42. The goalie nods. The puck makes its way to the pair and the small player hits the puck but misses the net. The coaches get the puck back to him and keep the other players off of him long enough so that finally the puck meets the net and the arms of the team shoot skyward in celebration.
It has taken two teams, multiple coaches, and one determined player to make this one goal in this one low-stakes game happen, but based on the cheers and celebration from both the ice and the stands, you would never think that this game was unimportant. Number 42 has been playing hockey for two seasons and this is his first ever in-game goal.

Number 42 is my 8-year-old autistic son, Jack, and this moment meant the world to him.

Why Outsource to India When There of Workers with Autism Ready and Willing to Work?

Part of the reason autism has captivated Hollywood moviemakers more than other developmental disabilities is that, for all the difficulties it brings those who have it, it also gives some of them the ability to perform uncanny feats of brainpower: effortlessly memorizing train schedules or song lyrics, identifying the day of the week of any date in the past. Even among those who aren’t full-blown savants, many display an impressive ability, even a desire, to immerse themselves in what the rest of us would see as mind-numbingly boring, detail-oriented tasks.

What if we could turn that ability toward things besides memorizing train schedules? It’s not simply an abstract question: The vast majority of those with Asperger’s syndrome and high-functioning autism are unemployed. A few companies are trying to do just that, and all in the same sphere: software testing, the epitome of mind-numbing, detail-oriented work. The pioneer was a company called Specialisterne, started in 2004 by a Danish software engineer with an autistic son—it has since created offshoots in Iceland and Scotland. In 2008 a small nonprofit called Aspiritech in Chicago was started to put people with high-functioning autism and Asperger’s syndrome to work testing smartphone apps.

California Autism Treatment Centers Close

NORTH HILLS, Calif. -- A series of Southern California treatment centers for children with autism closed Friday without warning, leaving the parents of the young patients wondering what happened.
Wellspring Health Care and Home Care provided treatment for thousands of children with autism across Southern California until Friday, when its locations shut their doors, apparently for good.

Rethinking Autism as a 'Whole Body' Condition

Dr. Martha Herbert

We often think of autism as a disorder of the brain. And it certainly is. But a new book, “The Autism Revolution,” (Random House) by Dr. Martha Herbert, an autism expert and pediatric neurologist at Massachusetts General Hospital, and CommonHealth writer Karen Weintraub asserts a more comprehensive and holistic view in which autism is really a condition of the whole body and should be treated with that in mind.

Judge Order's Florida's Medicaid to Cover ABA

LAKELAND, Fla. -- Florida's Medicaid program must cover applied behavioral analysis for children who are diagnosed with autism and related disorders, a federal judge in Miami ruled Monday morning.

An estimated 8,500 Florida children on Medicaid are identified now as having full-blown autism or related conditions falling under the umbrella of autism spectrum disorder. The decision will benefit them, along with other children diagnosed with those disorders in the future who need behavioral health therapy.

"U.S. District Court Judge Joan Lenard called the state's decision not to cover ABA therapy "arbitrary, capricious and unreasonable, both in its process and in its conclusion.

Where Mobile Apps Are Built By Those Who Benefit From Experience

Kyle, an instructor helps a
student at the nonPareil
Institute

Came across this gem this morning. Wonderful story about an amazing company in Texas. Hopefully their 100-year-plan will come to reality.

PLANO, Texas -- The connection between adults with autism and computer programming has become the basis of a unique nonprofit technology company in Texas.
Called the nonPareil Institute (for "no equal"), the company builds apps for iPhone and Android phones and PCs. The 11 staffers provide 80 students who are on the autism spectrum, which includes Asperger's Syndrome, technical training and help adjusting to a work environment.

People with Autism Better Suited Than Others To Process Information, Study Finds

People with autism have an enhanced ability to process information, which may explain the apparently higher-than-average percentage of people with autism who work in the information technology industry, British researchers say.
Along with this heightened capacity for processing information, people with autism are better able to detect information that is considered critical, according to the study, which appeared March 22 in the Journal of Abnormal Psychology.

Opinion: Empowerment and Education Needed to Put an End to Abuse

Howard Moon is an Ocala advocate for children and the disabled. He is a past recipient of the Marion County Children's Alliance Children's Champion Award.

Some statistics just scare me and make me almost ashamed to be human. Especially concerning are the statistics regarding family or domestic violence and abuse of persons with disabilities. These are our most vulnerable residents. These are the people who need the most care and protection.

However, they are being abused at an alarming rate. People with developmental disabilities, for example, are four to 10 times more likely to be victims of abuse than the general population.

Delays, Splinter Skills and Crystal Balls

From Laura Shumaker's blog at SFGate.com. Good timing for Developmental Disability Awareness Month.

Can you imagine what it feels like to hear that your child has a developmental disability?
Here is my story:
_____
“Matthew was tested by a speech therapist, and a psychologist already,” said my husband Peter, “I don’t get why he needs to see a developmental pediatrician.”
“Because a developmental pediatrician will look at Matthew’s development from a medical perspective and make referrals to other specialists if needed,” I said, though I agreed that it was a little ridiculous to test him again so soon.
After testing Matthew, the developmental pediatrician started by giving us the most encouraging news of all. “Many areas of his delay are quite mild,” he said, “and Matthew has splinter skills, which are areas where he is at or above age level. With continued focus on speech and language, I’m optimistic about Matthew’s prognosis.”
Peter and I looked at each other and pumped our fists. Good news!
“This is wonderful!” I exclaimed.
“The fact that a significant delay exists is evident,” the doctor hedged.
Uh-oh.

Florida Man Walking to Washington for Autism

Troy Blevins strides up U.S. 1 with a purpose.
The Florida resident is walking to Washington, D.C., hoping to raise awareness of autism. He began his 760-mile trek, which he calls “My House to the White House,” at his home in St. Augustine, Fla., in mid-February. He tries to walk 18 to 20 miles each day, and hopes to arrive at his destination April 5.
“We are hoping to make an impact,” Blevins said by cellphone as he walked through Moore County Wednesday. He is walking on behalf of Project Autism of St. Johns Inc. April is Autism Awareness Month.
Blevins and his wife, Gina, — have two sons, Blake, 11, and Ty, 9. Both have autism.
Along the way, Blevins is speaking with local groups, schools, media and individuals. He stresses the importance of early diagnosis and treatment of autism.

State Department Selects Documentary Showing How People with Disabilities Work to Inspire Audiences

For Once in My Life, a film about The Spirit of Goodwill® Band, a musical group made up of program participants from Goodwill Industries of South Florida (Miami), is one of 29 films selected for the 2012 American Film Showcase. The American Film Showcase is an international cultural diplomacy initiative that will bring award-winning American films, including documentaries, feature films and animated shorts, to foreign audiences through events worldwide.
For Once in My Life is a film that shatters preconceived notions of what it means to have a disability and shows the greatness that lies within each of us. The film chronicles the 28 members of the Spirit of Goodwill Band, all of whom have varying developmental and physical disabilities, such as autism, Down syndrome and blindness, and a wide range of behavioral disorders.

Site Preserves History of Fight for Rights for The Intellectually Disabled

In the 1950s, Eleanor Elkin adopted a baby boy, Richard, whom -- it soon became clear -- had intellectual disabilities. It was a much different era then and the adoption agency offered to take him back.
“But no, I said, you don't send babies back; you don't turn them in like cars. We had had him then probably about two weeks and by then he was my son … there was no doubt …and no way were they going to get him back,” Elkin recalled.
The story of Elkin, who is 95 and a leader in the Intellectual Disability Movement in Pennsylvania and across the country, is now documented and preserved through Visionary Voices, a new site that was recently launched by Temple’s Institute on Disabilities (IOD).

Glee’s Lauren Potter on World Down Syndrome Day and Bullying

March 21, was Down Syndrome International’s World Down Syndrome Day. Their goal is to “create a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome.”
“Glee” star Lauren Potter opened up on Huffington Post on Wednesday about her own experiences, and how Down Syndrome has not stopped her from achieving what she dreamed. The actress says people told her she could never make it to the stage, but she paid attention to the people who said she could.

Special Needs Cheer Squad Sparkles

At the age of 17, despite a developmental disability, Blair Mercer is shining in her penultimate year in high school.
She is getting a sense of independence, going to dances by herself and attending high school sporting events.
Her newfound independence has come because Blair is part of an innovative adaptive cheerleading squad in the Farmington school district.
Where before Blair was chaperoned by her parents for activities or events, the cheerleading squad has allowed her to be more like other students at Farmington High School.
It has also allowed her parents to do something they thought they would never have a chance to do: simply observe their daughter participating in a sport or activity at school.

Surf Group Changing Lives of Autistic Children

Jacob Wolf frowns, cups his hands over his ears to shut out the clamor of the world, and stares fixedly at the ground as he navigates the playground.
His father touches his shoulder, then holds his angelic face and waits for the 10-year-old to focus.
"What do you do on the ocean, Jacob?" Robert Wolf asks.
The frown changes to a grin.
"Surf!" he answers quickly, snapping into surfing position and waving his arms to demonstrate.

Lacey Township Girl Scout Troop Caters to Girls With Special Needs

LACEY, NJ - As Girl Scouting celebrates its first 100 years, Lacey Township Girl Scout Troop 476 is celebrating its first year together. Troop leader Maryann Pietruska formed the troop in an effort to attract girls who might not have considered being a Girl Scout otherwise.
"Four of the girls joined as first-time Girl Scouts," said Pietruska, a retired teacher who taught every type of class from honors to special needs. "Our girls work at their own pace as to what their interests and abilities are."
The five members of the Junior-level troop have various disabilities, ranging from physical to developmental.

A Touch of Understanding: Nonprofit has Taught Disability Awareness to 50,000 Students

A student works at an an
"invisible disability station"

“Respect means treating people the way you want to be treated. Everyone should be treated with respect.”
That was the message on the whiteboard in the Dry Creek School classroom where around 35 fifth-graders gathered for a disability awareness program on a recent Thursday.
They sat on the floor, listening and interacting with Leslie DeDora as she talked about understanding and accepting people who walk, talk or act differently than they do.

Disabled Artists Show Off Their Abilities

MANSFIELD -- Richland Newhope's observance of Disabilities Awareness Month this March will draw to a colorful close with an art and talent exhibit for the public at Richland Mall in Ontario. The event, noon to 7 p.m. Friday, will feature the work of individuals supported by Richland Newhope.
Kathy Goodwin, director of Newhope's Element of Art Studio and Gallery at 96 N. Main St., says people who visit the gallery across from the Richland Carrousel Park are pleasantly surprised when they discover the art is the work of people with a wide range of disabilities.

Understanding Why Autistic People May Reject Social Touch

One of the hardest challenges for families facing autism is the problem of touch. Often, autistic children resist hugging and other types of physical contact, causing distress all around.
Now, a new study offers insight into why some people shrug off physical touches and how families affected by autism may learn to share hugs without overwhelming an autistic child’s senses.
Yale neuroscientists recruited 19 young adults and imaged their brain activity as a researcher lightly brushed them on the forearm with a soft watercolor paintbrush. In some cases, the brushing was quick, and in others slow: prior studies have shown that most people like slow brushing and perceive it as affectionate contact, while the faster version is felt as less pleasant and more tickle-like.

Dublin Man Exemplifies Kasich Jobs Initiative for Developmentally Disabled

When Gov. John Kasich put his name to paper yesterday, it was Micah Hetrick who dotted the "i."
Life stories like Hetrick’s punctuate Kasich’s new Employment First initiative — to makereal-world job placement a priority for working-age Ohioans with developmental disabilities.
Hetrick, 23, of Dublin, has Down syndrome. But after graduating from Dublin Scioto High School and Project SEARCH, a training and employment program for people with disabilities that originated in Cincinnati, he works at Sam’s Club making $8.50 an hour.

Toy-Lending Library Offers Adaptive Play

All of the excitement and fantasy of kids set loose in a toy store came to Nipomo recently with the opening of Pat’s Place, a toy lending library sponsored by the nonprofit Jack’s Helping Hand.
“I love all the noise and commotion,” said Bridget Ready, one of the founders of Jack’s Helping Hand — a nonprofit organization that assists children with illnesses and disabilities by funding treatments and services otherwise unattainable.

Autism's Burden Reflected in Family Incomes

Raising children brings financial challenge for many families, but especially for parents of children with autism. And the magnitude of that burden is a lot bigger than you may think.

A new study in the journal Pediatrics finds that overall earnings in families with children with autism are 28% ($17,763) less compared to families whose children do not have health limitations, and 21% ($10,416) less compared to families with children with other health limitations.

CVS Caremark and Easter Seals Help Make the First Five Years of Life Count for Kids

According to the National Survey of Children's Health 2007, one in five households with children has a child with a special health care need and could benefit from screening and services, yet less than 20 percent of children under the age of 5 receive a developmental screening.  Easter Seals, through the generous support of the CVS Caremark Charitable Trust, is now making it possible for parents and caregivers to easily track their children's' development through age 5 by means of a free online screening tool.
Traditionally used by clinicians, therapists, professionals, and educators, Brookes Publishing's Ages & Stages Questionnaires (ASQ)® is now available to parents and caregivers on Easter Seals' Make the First Five Count website to monitor child development and identify potential issues so that any concerns can be readily addressed to make sure they are on track and ready to enter school.

Read more here: http://www.sacbee.com/2012/03/19/4348757/cvs-caremark-and-easter-seals.html#storylink=cpy

Read more here: http://www.sacbee.com/2012/03/19/4348757/cvs-caremark-and-easter-seals.html#storylink=cpy

Under ADA, Public Pools Now Required to Provide Handicapped Access

Today is the first day that most public pools and spas must have permanent lifts, according to Americans with Disabilities Act guidelines. Not all do now, but most will soon or face possible fines or lawsuits.

Disabilities Advocates File Lawsuit

HARRISBURG - Advocates for people with mental illness and intellectual disabilities filed a lawsuit Wednesday claiming that Gov. Corbett and executive agencies violated state law by requesting too little funding for services.
The governor has proposed combining funding for several public welfare programs, including services for mental illness and intellectual disabilities, into block grants for administration by counties.

Two Friends With Down Syndrome to Make History by Completing the LA Marathon

Angela Armenta & Antoinette Mendoza are two friends who have Down Syndrome, but they are not letting that stop them from completing the LA Marathon March 18th!
According to ARC, Angela & Antoinette will be the first women with Down Syndrome to complete the LA Marathon, and they are beyond excited to hold that title! Their inspiration came about when they saw their friends Rafael & Tim, two men with special needs, complete five marathons over the last few years.

Letter: Why Civility is Important Today

Baton Rouge, LA - Jason W. Weill, a self-described "human rights watchdog", wrote an opinion piece in The Advocate about some recent political discourse.
I decided to write this letter to The Advocate in wake of the Rush Limbaugh-Sandra Fluke incident because I am very concerned that individuals continue to show disrespect to other individuals with whom they do not agree. I would like to share with you straight from the heart why this issue matters to me; as someone diagnosed with an autism spectrum disorder, I know what it is like to be the target of uncivilized behavior.

Pentagon Extends Pilot Autism Treatment Program

ARLINGTON, Va. -- The Pentagon announced Tuesday it is extending a pilot program that provides autism treatment to the children of service members.
Tricare Management Activity will extend the Enhanced Access to Autism Services demonstration program through March 2014, according to a news release.
The initiative allows beneficiaries — qualifying offspring of active-duty personnel — to receive 10 hours a week of applied behavioral analysis, or ABA, a treatment that helps autistic youngsters learn new skills and improve communications.

Autism Won't Stop Her Singing Career

Katie Chance

NASHVILLE, Tenn. -- It may be hard to believe at first, but Katie Chance didn't even speak until she was four years old.
"I think most of it is stress because I get very stressed if something doesn't go right," she said Tuesday night. "I really had to learn that if something goes wrong I have to deal with it and move on."
As a toddler, doctors diagnosed her with Asperger's syndrome, a mild form of autism.

Michigan Senate Backs Autism Bills

LANSING, Mich. -- The Michigan Senate approved a package of bills Tuesday that would require insurance companies to cover certain types of treatment or therapy for autism despite opposition from insurance and business groups and mental health advocates.
The three-bill package, approved on votes of 29-9 and 28-10, moves to the state House of Representatives. The legislation would require that insurance companies cover treatment for autism spectrum disorders up to $50,000 a year to age 18 and create a state fund to reimburse claims from insurers and third-party administrators.

On-the-Job Weight Loss

Taking advantage of a lunch break.

STATEN ISLAND, N.Y. -- Shai Garner knows that a healthy and happy staff makes for a healthy and happy clientele in her line of work. So, when she kept hearing her co-workers talk about how they needed to lose weight, she decided to do something about it.
Last month, the Willowbrook-based Staten Island Developmental Disabilities Services Office (SIDDSO) kicked off its first “The Biggest Loser” style contest. Four teams of up to 15 employees are competing to take home the title and lose as much weight as possible in three months. “I was thinking about how we can boost the morale of the staff and the individuals we service,” said Ms. Garner, a senior recreation therapist. “It’s something I’ve been thinking about for a while. I was trying to pull together different activities to get the staff motivated.”

Students Pass Up Beach to Help Others

PHILADELPHIA -- Several students from the University of Georgia skipped the beach and decided to spend their Spring Break in the City of Brotherly Love for a worthy cause.

18 students from the school arrived on Sunday in the Hunting Park section of the city to spend a week as volunteers for the Arc of Philadelphia and the Philadelphia Developmental Disabilities Corporation. The students will be working with local residents with intellectual and developmental disabilities.

Group Homes Still Face Community Resistance

Damon Hood participates in the
Support Services for Adults program.

WENTZVILLE, Mo. -- Lisa Drier remembers a man who spent years in a nursing home before moving into a group home in Wentzville.
The man hadn’t eaten in a restaurant for years, Drier said the staff learned.
“He walked in and said, 'It feels so good to be home,’” said Drier, who is the executive director of the Emmaus Trust Foundation. Emmaus is a St. Charles-based nonprofit organization that operates group homes for disabled people.
But group homes in residential areas are a complicated issue issue these days. Some area municipalities have laws that limit the number of group homes by requiring them to be a certain distance apart.

Families Fear Michigan Plan for Dually-Diagnosed

LANSING, Mich. -- Michigan health officials have come up with a new plan for providing care to people who qualify for both Medicaid and Medicare and are seeking public comment at eight forums this month.
The proposed plan affects those with developmental disabilities or mental illness who are considered “dual eligible” under Medicaid and Medicare.
The goal is to provide better integrated care for patients and improve efficiency, but the process has sparked controversy among families of those affected. In forums last year, parents and caregivers said they were afraid that strong local programs of care would be replaced with statewide programs that cut services and have little local accountability.

Kids with Autism at Synagogue on Purim? Not a Prayer, Right?

Wonderful piece by Amy Lennard Goehner from Huffington Post.

I celebrated the Jewish holiday Purim last week at my synagogue. And Purim, along with a host of other Jewish holidays, will never be the same for me.
Though I attend services at my synagogue regularly, it has never once occurred to me to bring along my older son, Nate, who has autism. To imagine Nate sitting quietly in his seat for 90 minutes, not talking, not eating, and listening to words he can't understand (and that's just the English) -- is simply unimaginable. And that includes the kid-centered holiday services, where the cacophony of joyful sounds is anything but music to the ears of anyone with sensory issues. So I've always chalked up "going to synagogue" as just another family event which our whole family could not enjoy.
Until now.

New School Recruiting Undiagnosed Students

NEW YORK, N.Y. -- The founders of a new Harlem charter school for students with high-functioning autism are hitting neighborhood streets to recruit undiagnosed children.
Officials from the Neighborhood Charter School of Harlem, slated to open in mid-August, have spent the last year talking to preschool parents about the signs of autism through visits to dozens of schools, local stores, hair salons and laundromats.
"We know statistically that there are as many high functioning autistic kids in low income neighborhoods as anywhere else," said Neighborhood’s co-founder Patti Soussloff. "We wanted to make sure the school is available to all those people with our huge outreach program."

Guest Essay: Sharing Inspiring Stories

Rod Christian of Penfield, N.Y., is director, donor relations at The Arc of Monroe.
 
For the past 17 years, I’ve been working for non-profits that serve children and adults with developmental and/or intellectual disabilities. But a recent project with a simple premise has given me a much greater understanding of and appreciation for persons with developmental and intellectual disabilities and their families — their unique personal narratives, challenges, and triumphs.
You never know when something you once studied will come back and show its worth.  I majored in journalism in college. After joining The Arc of Monroe a few years ago, one of my responsibilities was to begin building relationships with the family members of those we support. It didn’t occur to me right away that my journalism degree and this responsibility might naturally intersect, but it did and in a powerful way.

Orchestra Connects with Special Audiences

MADISON, Wis. -- Music belongs to everyone — which is the reason violinists Suzanne Beia and Laura Burns, violist Christopher Dozoryst and cellist Karl Lavine are out and about on a chilly winter afternoon, heading to the Central Wisconsin Center with their instruments and a thick folder of music.
The musicians make up the string quartet HeartStrings, an outreach program of the Madison Symphony Orchestra. Since 2006 the group has made the rounds of nursing homes, retirement centers, the children’s hospital, family resource centers and facilities for people with developmental disabilities such as Central Wisconsin Center to perform a live, interactive program grounded in the principles of music therapy.

Making a Case for Patient-Centered Medical Home

Have talked with so many professionals on the lack of effective health care services for people with autism and other developmental disabilities. It's quite clear that with the shift toward more outcome-based services, that the patient-centered medical home is a model that will definitely catch on.
 
The Patient Centered Medical Home is a simple idea — a patient has a relationship with a primary care physician who looks after his or her overall health.
One would like to think health care already works this way. Or maybe it did at one time — imagine Marcus Welby or the doctors in Norman Rockwell paintings.
Today, this concept is being driven by alarming statistics about the present state of health care.
The first problem is overall quality.

New Strategy to Help Adults with Autism

 This is definitely one of those areas that gets me riled up -- autism isn't just about cute little children. Fortunately children today have the benefit of so many therapies and interventions. But what about those adults who are in the community today? So, we go to England to learn about its strategy for adults on the spectrum.

HAMPSHIRE, England -- A new approach to helping adults with autism is being set out by the Hampshire Autism Partnership Board and is now out for a three-month consultation.
The draft Hampshire Autism Strategy for Adults is the first part of a ‘lifespan autism strategy. The second part, for children, will be published in 2013.
The strategy aims to give adults with autism the same opportunities as anyone else to live a rewarding and fulfilling life,

How Will Boy with Autism Calm Down in Future?

Sage Rollins

Just catching up on this on Momarama blog.

WILDOMAR, Calif. Laurie Rathbun, a Murrieta parent, emailed to talk about Tuesday's column and blog post concerning the Wildomar fourth-grader with Asperger's syndrome who had a box in his classroom to provide a "quiet place" for him to calm himself. When Sage Rollins' mother learned of the box, she accused the teacher of mistreating her son and has taken legal action.
(The Press-Enterprise's news story about this can be read here. Tuesday's Momarama blog post about this can be read by clicking here.)

Politicans' loss Is Autism Group's Gain

BOSTON --  A Massachusetts research collaborative looking into the causes and treatment of autism is the first beneficiary of an unusual deal struck by U.S. Sen. Scott Brown and his Democratic challenger Elizabeth Warren to discourage third-party campaign ads.
Warren on Friday chose the Autism Consortium to receive a donation from Brown under the agreement signed by both candidates in January.
The deal — dubbed the “People’s Pledge” by both campaigns — is designed to blunt the influence of negative attack ads in what is shaping up to be the most expensive U.S. Senate race in Massachusetts history.

Mom Asks World to Stop Using R-Word

A colleague shared this with me the other day. I've posted Max's story before but what is really troubling are the comments. Truly disturbing. Hoping you'll share your thoughts.

Max Seidman is "a kid with special needs who kicks butt -- and who deserves your respect." So says his mother, who wants you to help banish the derogatory term "retard" from our vernacular. Before producing this video in support of a Special Olympics campaign (called Spread The Word To End The Word), Ellen Seidman had called out dozens of Twitter users, to mixed results, for their casual use of the R-word.

Why Aren't People More Outraged?

 Interesting post from thestir.cafemom.com

According to neighbors and former teachers, George Hodgins was a pleasant adult with autism. He was non-verbal and afraid of the neighborhood dogs but enjoyed hikes, going on walks, and listening to music. This past week, however, things took a sad turn for the worst. George's mother shot her only child in his bedroom and turned the gun on herself. Her husband, George's father, found them a few hours later. 
Neighbors recall her saying she was tired and she needed a break. That she was stressed out and depressed, thinking she recently had a nervous breakdown. Elizabeth Hodgins pulled George from a San Jose Autism Center in December, hoping to find something she felt was more appropriate for her son. George had attended the program since he became school-age and could have transitioned to an adult day program there. But Elizabeth wanted more for her son. She was just having trouble finding it.

Agency Gives Caregivers a Well-Deserved Break

VolunPEER Drew, from left, assists his
sibling Avery, a client of Desperate
for Respite, with a game at February’s
Caregivers’ Night Out event.
VolunPEER Khamani and client
Mason join in the fun.

HOUSTON -- The staff and volunteers of local nonprofit Desperate for Respite provide clients with a simple yet priceless gift: four hours to just be.
The organization hosts monthly Caregivers’ Night Out events on Saturday nights, providing fun for children and adults with intellectual, physical and developmental disabilities, so caregivers can have a small period of time to themselves.
“How comfortable would you feel sharing the road with an 18-wheeler driver that’s been driving for 36 hours straight? Nobody wants to do their job 24/7,” said executive director Tonya Frye. “Some of these kids, especially the more severe ones, need constant attention, and that usually falls on the mom or the grandmother or the sibling.”

Missouri City Stops Identifying People by Disability

So refreshing and reassuring. And it validates the direction in which YAI is heading when it comes to language and branding. Even after spending four years in Missouri for college, must confess I have no never heard of Arnold, Mo. They should definitely be on everyone's radar now!!!

ARNOLD, Mo. -- The City of Arnold became one of Missouri’s more progressive cities during the City Council meeting on March 1.
At that City Hall meeting, at 2101 Jeffco Blvd., councilmen approved guidelines for writing and reporting about people with disabilities.
“Write about the people first, only mention the disability if it’s needed,” Bill Knittng, Director of the Jefferson County Developmental Disabilities Resource Board, said about the motion.

N.J. Panel OK's Bill Preventing Discrimination

Bravo!

TRENTON, N.J. — The Senate health committee Thursday unanimously approved a bill that penalizes any New Jersey hospital for denying people organ transplants solely because they have an intellectual or developmental disability.
The bill was swiftly introduced after the parents of 3-year-old Amelia Rivera of Stratford said a physician from Children's Hospital of Philadelphia told them in January their child would not be eligible for a kidney transplant because she is "mentally retarded." According to the blog post written by Chrissy Rivera, her daughter has Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities.

Editorial: Kansas Await Ruling on Wait Lists

Will the U.S. Department of Justice put the hammer down on Kansas? That’s the question after a meeting last week about Kansas’ long waiting lists for services for people with disabilities. If the Justice Department does take action, it will be for good reason.
More than 5,000 Kansans with developmental or physical disabilities have qualified for services but are on waiting lists. Many of them have been on the lists for years.

Read more here: http://www.kansas.com/2012/03/08/2245693/action-on-waiting-lists.html#storylink=cpy

Ending the R-Word: Ban it or Understand it

Ellen Seidman and her son, Max.

Every time Ellen Seidman hears the word "retarded," she worries for her 9-year-old son, Max, who has cerebral palsy.
She wonders if people will ever respect him, or see him as an equal, if they associate that word with people like him, who have intellectual disabilities.
"I'm not saying that anyone who uses the word flippantly has something against people with special needs," said Seidman, a magazine editor and mom blogger. "But it is a demeaning word even if it's meant as a joke, because it spreads the idea that people who are cognitively impaired are either stupid or losers."

Another Hearing on Proposed Closing of Center

Sharon Pfeiffer pushes her daughter,
resident Kathy Lowe, left, while David
Iacono-Harris, center, and his
son, Jonathan, right, another resident follow
at the Jacksonville Developmental Center

JACKSONVILLE, Ill. -- It’s round two with another public hearing on the proposed closure of the Jacksonville Developmental Center being held today — just the latest in what has been a six-month process aimed at closing the facility.
The Commission on Government Forecasting and Accountability will convene the hearing at 5 p.m. in the Illinois College Bruner Fitness Center.
There, the commission will ask questions of members of the Department of Human Services and the Governor’s office and hear testimony from politicians, advocacy groups and members of the public.

Maryland Legislation Would Make It Easier for Parents to Get Involved in Children's Education

Commentary from The Baltimore Sun by Curtis Valentine, founding executive director of MarylandCAN: The Maryland Campaign for Achievement Now, a nonprofit education advocacy organization, and  Eric Cole, the vice-chairman of the Maryland Developmental Disabilities Council, a public policy organization that advocates for the inclusion of people with developmental disabilities in all facets of community life.

ANNAPOLIS, Md. -- Too many Maryland parents are engaged in a tug-of-war between their family's financial livelihood and their children's education. Sadly, in this economic downturn, financial needs often win the day.
The state cannot legislate parental involvement, but it can do everything in its power to reduce any barriers to it. That is why MarylandCAN: The Maryland Campaign for Achievement Now and the Maryland Developmental Disabilities Council stand together in support of SB 329/HB 567, legislation before the Maryland General Assembly that ensures parents and guardians the right to attend parent-teacher conferences, Individualized Education Program meetings, Individualized Family Service Plan meetings and 504 meetings without penalty from their employer.

Watch Your Language: Stop Using the R-Word

SAN DIEGO –  Civilized, caring people have stopped using common derogatory terms intended to stereotype, belittle and show disrespect to people due to race, sexual orientation, gender or certain physical attributes.
But there is one common slang term that is equally insulting and offensive, yet people use it without hesitation: the R-word.
The R-word, “retard” or “retarded,” is slang for the term mental retardation. Mental retardation was what doctors, psychologists, and other professionals used to describe people with significant intellectual impairment. The R-word is still commonly used by society as a thoughtless insult for someone or something stupid. You might hear someone say without thinking, “That is so retarded” or “Don’t be such a retard.”

With Help of iPad, 12-Year-Old Marks Milestone

Michael and Suzanne Emmi
use an iPad to help their son Matthew.

ANDOVER, Mass. -- The 12-year-old boy sat in the synagogue, looked out at the congregation, and waved. On a day when Jewish tradition marks the transition from boy to man, Matthew Emmi smiled often and moved his hands to the music of the Hebrew songs. During prayers, he alternately slouched and sat erect.
And when it was time for him to say a prayer before the Torah, he touched the screen of an iPad.
Matthew is severely autistic and cannot read, write, or speak sentences. His family, friends, and educators never know exactly what he is thinking, but they know Matthew likes going to synagogue. He has been a regular at the Sunday service at Andover’s Temple Emanuel, where he hums, claps and smiles when Cantor Idan Irelander plays traditional Hebrew prayers on his guitar.

When Leaving 'for Personal Reasons' Is Just That

CHICAGO -- When executives cite "personal reasons" for leaving jobs, it often comes across as spin.

Mark LaNeve

Sometimes, skepticism over the news turns out to be justified. Other times, it really appears to be true. Deeper digging to get that the truth is almost always required.

This Hockey Team Brings Passion to the Ice

HARTFORD, Conn. -- Before and after Andy Jortner underwent surgery for pancreatitis and gall bladder disease last fall he was in excruciating pain. But each time his mother said her 28-year-old son still held his hands together and motioned as if controlling a puck.
“All he wanted to know is when he could play hockey,” his mother Catherine said.
The young man is one of 13 players on the Connecticut Chasers, a team for those with developmental disabilities in the Greater Hartford area. The Jortners are from Kensington and the current roster also includes players from towns such as West Hartford, Avon, Ellington, South Windsor and Simsbury.

Nonprofits Vie for Share of Charity Resale Business

Amy and Tom Paprocki of Jefferson
are rung up by St. Vinny's
cashiers Dora Urbina and Sue Huffman

CORAVALLIS, Ore. -- When Goodwill Industries built a $1.8 million thrift store on Northwest Ninth Street in 2005, Arc of Benton County Director Karin Frederick knew she had a problem.
The brand new 20,000-square-foot superstore was right across the street from The Arc’s Corvallis resale shop, a much smaller location with less parking and limited street exposure. And Goodwill had a secret weapon: a covered drive-through area for dropping off donations.
“It’s a beauty,” Frederick sighed.
Goodwill Industries is a juggernaut in the used merchandise trade, with more than 2,600 stores nationwide and a business model fine-tuned over a century of providing employment for the disabled.
For other nonprofits trying to fund their missions by reselling clothing, furniture, housewares and home electronics, going head to head with Goodwill is an existential challenge. The resale giant also opened an Albany superstore in 2002, and organizations throughout the mid-valley have discovered they must either compete for customers and donations or get out of the way.

Military Families Seek Autism Coverage Changes

Add caption

KILLEEN, Texas -- Prepared to remain in the military indefinitely, Lt. Col. Chuck May is determined to get his children the health care they need.
"I would stay in the Army well beyond 30 years if I knew I could have my family covered with TRICARE," said the officer in Fort Hood's Operational Test Command. "I don't care about pay raises, and I don't care about promotions."
May's sons, ages 11 and 14, have been diagnosed with forms of autism spectrum disorder. In the year before TRICARE covered any autism treatment, the May family spent $19,000 on therapy for just one of his sons.
Now TRICARE offers autism therapy through the Extended Care Health Option, but only active-duty service members are eligible to participate. If May retires, his sons lose the coverage.

Overcoming the Odds and Playing for Michigan St.

Anthony Ianni, right, with teammates

EAST LANSING, Mich. -- Anthony Ianni isn’t sure if he’ll cry when he kisses center court on Senior Day, the emotions overwhelming him while surrounded by fans and family celebrating the achievements during his improbable Michigan State career.
The former walk-on-transfer earned the respect of coach Tom Izzo as the captain of the Spartans’ scout team along with a scholarship to play on one of the best college basketball programs in the country.
The big man also managed to prove a team of doubters from his past to be completely wrong.
Ianni was 5 years old when a group of specialists and therapists ran a battery of tests and foretold a future for him that stunned his father and left his mother in tears.

Fitness, Nutrition and Special Needs

LYNCHBURG, Va. -- Special Olympics and Challenger Baseball have some competition.
The YMCA of Central Virginia is offering a new fitness and nutrition program specifically for members of the Intellectual and Developmental Disability, or IDD, community.
Already, 15 students have signed up.
“It’s a different kind of opportunity for the special needs population,” said Cindy Capps, who began teaching the first class in January. Between cycling and zumba lessons, Capps inspires students to consider water instead of soda and yogurt instead of ice cream. YMCA staff modified a fitness and nutrition program called “Shapedown” to meet the specific needs of those in the class. Each activity — such as doing bicep curls with bands —can work for a variety of abilities.

Confusion Over Autism Coverage Laws

Even in states requiring health insurers to cover autism treatments, a new survey suggests that uncertainty about the mandates is calling into question the effectiveness of the laws.
In the survey of more than 900 families affected by autism who live in states requiring coverage, more than a quarter said they were unaware of the rules in their state.
And among those who were familiar with their state’s autism insurance law, more than half said they didn’t know if their insurance plan was included.

Training First Responders to Help Those with Autism Is Mission Close to Fire Captain's Heart

An amazing job by the Today show. Such an important topic and only wish Capt. Cannata could help educate other first responders, including the police, about helping people with autism and other developmental disabilities.

WESTWOOD, Mass. -- As an experienced firefighter and a devoted father to an autistic son, Bill Cannata is combining the two worlds he knows so well to help protect others.
Being in a fire can be confusing and overwhelming -- especially for someone with autism, says Cannata, a fire captain in Westwood, Mass. And autistic people may react in a way that seems combative to emergency first responders. His mission: teaching first responders around the country how to identify someone with autism and how best to help them in an emergency, when every second counts.
Cannata knows about autism first-hand: His 21-year-old son, Ted, who has the disorder, is unable to speak and is highly sensitive to sight, sound and touch.

Connecticut Struggles with Adult Services

Stan and Kathy Peters stand with
their daughter, Sarah, 28, at their
Killingworth home where she still lives.

 

There are so many families like the Peters. Hopefully Sarah will be able to move into a group residence and enjoy a quality life and her parents can retire with peace of mind knowing she is well cared for, safe and happy. Sarah deserves nothing less.

HARTFORD, Conn. -- Kathy and Stan Peters talk about retiring to Florida, but first, they must consider Sarah, their daughter with intellectual disabilities. She's 28 and lives at home but wants her independence. Florida's group home situation is dismal, and Connecticut — unless there's an emergency in the family — has a growing waiting list and a complicated system, Kathy Peters says.
"I have a couple of master's degrees, but trying to get through the system can be just exhausting," she said.
The state Department of Developmental Services, the agency charged with the providing services for residents with intellectual disabilities, just released its five-year plan that concurs with Peters' assessment. The department, with its $1 billion budget, is currently working in a system that is "unsustainable," the report said. The old model — early intervention, special education, day programs for older residents — is too expensive.

Get Involved in Developmental Disabilities Awareness Month

Nationwide, approximately 4.6 million Americans live with developmental disabilities. As the nation’s deficit must be brought under control, budget cuts could hamper essential services for individuals with special needs. March is a time to reflect and participate in Developmental Disabilities Awareness month. President Obama recently announced his revenue and spending plan that will begin on October 1 of this year. Some of the bright spots include increasing the funding for the Early Intervention Part C program for the Individuals with Disabilities Education Act. But other programs such as the Supportive Housing for People with Disabilities were cut by 10 percent. The President’s budget is just a start for the yearly budget and we could see other budgets and bills from Congress.

Plan for Harlem Group Home Scaled Back

HARLEM, N.Y. — A controversial plan to house seven developmentally disabled men in two luxury condominiums on Lenox Avenue to house seven developmentally disabled men has been scaled back, according to a state agency.
Non-profit Community Options is now seeking approval from the state Office for People with Developmental Disabilities to purchase just one condominium, an agency spokesman said.

Official: N.J. Can Make Up for Loss of Federal Reimbursement with Other Medicaid Savings

TRENTON, N.J. -- While waiting for federal approval to overhaul New Jersey's Medicaid program, state Human Services Commissioner Jennifer Velez said Wednesday the state will reach its goal of saving $300 million this year without having to impose service cuts or reducing the number of people insured.
Velez acknowledged "it was a big disappointment" when the U.S. Centers for Medicare and and Medicaid Services declined the state's request last year for $107.3 million that New Jersey mistakenly paid for decades by providing disability insurance coverage for low-income people. Every state had hoped to recoup millions this way, under a mistake the federal government has acknowledged, she noted.
But Velez assured the Assembly Budget Committee in Trenton the lost reimbursement would be made up in other unanticipated ways, unrelated to the overhaul, formally known as the "comprehensive Medicaid waiver." Enrollment slowed down, and pharmaceutical drug companies paid more rebates to help offset the cost of prescription drugs, she said. Moving about 155,000 of senior citizens and people with disabilities into managed care plans also saved more money than expected.

iPad Playing Bigger Role in Autism Classroom

Joshua Brooks, 7, works on an
iPad with his teacher Danielle Loch

GLEN ELLYN, Ill. — Teachers of students with autism say it's the year of the iPad.
It provides motivation. It helps with therapy and handwriting practice. It even models appropriate ways to share toys or take turns.
For 7-year-old Joshua Brooks of Glen Ellyn, the device has educational, therapeutic and entertainment value — something teachers and parents say they're recognizing more these days.