Friday, December 30, 2011

Telling a Child They Have Autism

From Laura Shumaker's autism blog at

What’s the best way to tell a child they have autism? Is it necessary to tell them at all?
Does Matthew know that he has autism?” my friends used to ask.
When he was very young, I saw no reason to tell him. Each of my three sons was different from the other, and I didn’t want Matthew to feel like he was being singled out because of his autism. But from early on, the words “autistic”, “special” “handicap” and “different” were mentioned casually in his presence by so many. “I’m not special!” Matthew would say, “I’m regular just like my brothers and the kids at my school!” I wondered if there would ever be a day that I could have a meaningful talk with him about his autism diagnosis. Just writing about it brings back that old familiar lump in my throat.

N.J. Partnership to Help with Housing

From the Star-Ledger, a guest blog by Lori Grifa, Commissioner of the New Jersey Department of Community Affairs.

People with developmental disabilities are among the most vulnerable segments of our society who often rely only on the care and support of parents, siblings and other loved ones to help meet their daily needs. But what happens when caregivers become too old, too infirm, too financially challenged or simply too overwhelmed to meet the special needs of their family member?
"What will happen to my son, daughter, brother or sister, if something should happen to me?" This is a constant worry that haunts every family tending to a loved one with special needs.
To help these families, the Christie Administration has created a new program to address the critical housing shortage that has existed for developmentally disabled residents. In May, a new incentive program called the Special Needs Housing Partnership was launched in an effort to create affordable, supportive housing for 600 people with developmental disabilities by June 2013. While the Special Needs Housing Partnership is not intended to be a permanent fix, it does represent a good start with achievable goals to be attained within the next two years.

Feds Ordered Wisconsin to Lift Cap

MADISON, Wis. — Gov. Scott Walker failed to reveal that the federal government had ordered him to immediately lift an enrollment cap on a state program to help the disabled and elderly stay out of nursing homes, instead telling reporters that his administration removed restrictions after identifying tens of millions of dollars in efficiencies in the program.

Maryland to Get $28 Million Bonus for Children's Medicaid Enrollment

Maryland will receive a $28 million performance bonus from the U.S. Centers for Medicare and Medicaid Services for fiscal year 2011 for its consistent efforts to identify and enroll eligible children in Medicaid and CHIP coverage.
"Since 2007, we have expanded coverage to more than 300,000 Marylanders, almost half of them children, and this bonus is a great recognition of those efforts," Lt. Gov. Anthony Brown said in a written statement.
The bonus came as good news to a department that has had a series of negative audits in the past year identifying lack of control over Medicaid payments, benefits paid on behalf of dead people and $8 million in federal dollars that went unspent on those with developmental disabilities.

A Call for Cracking Down on Bullying

BALTIMORE -- Special-education advocates are calling for the state to do more to address the bullying of disabled students, saying that a recent lawsuit against the city school system highlights the long-lasting harm that harassment can do to such children.
Experts want officials to strengthen Maryland's anti-bullying laws to provide more detailed rules for educators to follow in reporting incidents and more scrutiny in situations that involve sometimes-fragile students.

Gov. Brown Got it Right in 1980; Now It's Time to Correct Current Injustice

Column by Mark R. Klaus, executive director of Home of Guiding Hands, which was founded in 1961 as the Lutheran Association for Retarded Children. It currently operates 31 community-based residential homes in San Diego County for children and adults with developmental disabilities

One of the smartest things Jerry Brown did during his first eight years as governor was to adopt the federal Intermediate Care Facility (ICF) program for California. This program allows for the care of people with developmental disabilities and serious medical needs in small community-based licensed homes as opposed to large congregate settings such as the much more costly state developmental centers or in more restrictive settings such as nursing homes.

Thursday, December 29, 2011

$68 Million Settlement Proposed for 10 Children in Adoption and Abuse Case

Lawyers for 10 disabled children who were fraudulently adopted by a Queens woman more than 15 years ago and subjected to years of abuse have proposed a $68 million settlement in a civil rights lawsuit filed on their clients’ behalf, according to a confidential court filing.
The proposal comes as a federal magistrate judge in Brooklyn appears to be trying to mediate a settlement to the suit, filed in 2009, which seeks damages from New York City and three contract adoption agencies that placed the children with the woman, Judith Leekin.
The case has been seen as one of the most disturbing child welfare fraud cases in the city in recent years. Ms. Leekin used four aliases to adopt the children, who had physical or developmental disabilities, including autism and retardation, and later moved them to Florida. The children were caged, restrained with plastic ties and handcuffs, beaten with sticks and hangers, and kept out of school, according to court papers. An 11th child disappeared while in Ms. Leekin’s care and is presumed dead.

For the Herd's Sake, Vaccinate

Dr. Steven Weinreb, a high school friend, had an oped in The New York Times yesterday. It makes a lot of sense. I realize there are so many families who truly believe that vaccinations gave their child autism. But maybe they should think again.

WEST HARTFORD, Conn. -- I have chronic lymphocytic leukemia. Three months ago, I underwent an allogeneic stem-cell transplant, in which my wise, 52-year-old white blood cells were replaced by bewildered, low-functioning cells from an anonymous European donor. For the next seven months or so, until those cells mature, I have a newborn’s immunity; I am prey to illnesses like chickenpox, the measles and the flu.
These diseases are rarely fatal, unless you’re a newborn or someone with a suppressed immune system like me. My newborn buddies and I do have some protection, however: the rest of you.

Football Helps Child Tackle Asperger's

SALISBURY, N.C. — Zachary Owen talks slowly and directly.
His actions are measured, like the hits he delivers on a football field, even at age 12.
This week, Owen has been attending activities and practices connected with the Offense-Defense All-American Bowl, a nationally televised showcase of 80 high school seniors.
No, he isn’t playing against high school seniors yet, but he will be competing in the similarly designed Offense-Defense Youth All-American Bowl with peers his own size.
During the week, he’ll get to play two games, including one in Cowboys Stadium in Arlington, Texas, home of the Dallas Cowboys. Zachary is a Carolina Panthers fan, by the way.
Football means a lot to Robby and Barbara Owen, because it has helped Zachary deal with his Asperger’s syndrome — a high-functioning autism that has challenged him since birth.

Wednesday, December 28, 2011

Tuscaloosa Center Closes After 88 Years

TUSCALOOSA, Ala. -- After 88 years of serving people with intellectual disabilities, the W.D. Partlow Development Center in Tuscaloosa has officially closed, announced the Alabama Department of Mental Health on Wednesday.
Since March of this year, approximately 150 residents were relocated from Partlow to other facilities. The last resident was relocated to another home Wednesday.

New Autism Program Underscores Need

NEW BRITAIN, Conn. -- The years of work that went into the Hospital for Special Care's plan to open an autism center gave officials there a sense of the need for services. But the demand hit home the morning after a local newspaper detailed the New Britain hospital's plans.
"We got a phone call by 9 o'clock from a dad," said Lynn Ricci, the hospital's senior vice president for administration. "People are really desperate for some help with this."
It was hard, Ricci said, to not be able to tell the man his child could be seen the next day, but the program isn't expected to open until later this winter.

Advice from Dr. Spock's 9th Edition: Less Materialism, More Nature

In the pantheon of parenting gurus, Dr. Spock appears to have legendary staying power. Nowadays, there are shelves full of niche parenting books, offering advice on raising twins or singletons, high-spirited toddlers and attention-starved middle children. But this week, the good doctor weighed in yet again with his generalist and commonsensical pronouncements. More than 60 years after the inaugural edition of Dr. Spock’s Baby and Child Care was published, the ninth edition hit the shelves.
Benjamin Spock died in 1998, so this most recent tome is the sum of Spock’s original content and that of similarly minded authors. At least half the book is still in Spock’s own words, but there’s new information on the importance of outdoor play and nature, on autism, ADHD, immunizations and raising children who aren’t so darn materialistic. The previous eight editions have sold more than 50 million copies.

Autism: A Year in Review

From Huffington Post's Cara Santa Maria.

In the United States, we've seen a fifteen-fold increase in autism diagnoses over the past two decades. In fact, it's currently estimated that almost 1% of US children have an autism-spectrum disorder (ASD), while the rates in US adults are largely unknown. Autism is described in the DSM-IV, listed as a disorder usually first diagnosed in infancy, childhood, or adolescence. Autism is further categorized as a pervasive developmental disorder, falling within the autistism spectrum, along with Asperger's and PDD-NOS.

Inclusion Films Opens Doors in Hollywood

Greg Donoghue grew up around film sets. His father worked as a film publicist in Europe and his uncle is Pierre Spengler, a producer of the "Superman" movies.
But the 30-year-old had never seriously considered a career in the movie industry until he got a chance to direct his own short-film called "Sunshine Manor," a love story about relationship between a nursing home patient and her doctor.
"It takes a lot of patience, and time is your worst enemy," Donoghue said of his directorial debut. "I'd rather build sets than be a director, but the experience is going to benefit me when I try to get an interview." Donoghue, who was diagnosed a few years ago with a form of high-functioning autism, was among nearly two dozen special-needs crew members who worked on "Sunshine Manor."

N.J. Prods Towns to Spend on Housing

New Jersey municipalities are sitting on a pile of cash — more than a quarter-billion dollars — and the state would like to help them spend it while addressing a critical housing shortage for some of its neediest residents.
The Department of Community Affairs signed a deal last week with 12 municipalities which allows the towns to spend some of their own money for new special needs housing. Lori Grifa, the outgoing DCA commissioner, expects the money to create 600 new beds by June 2013.
Under the deal, the towns will receive a dollar-for-dollar match on the money they spend. The towns committed $5.1 million, which the state matched.

It Takes a Village to Raise Child with Autism

From Michele Somerville on Huffington Post.

We're three years apart, my brother and me. I'm a city mouse. He's a suburb mouse. He drives a big suburban truck. I ride the subway. He works in finance and subsists on Diet Pepsi and cheeseburgers. I'm a latte-sipping, teacher and poet. There's a major cultural divide. On Sundays, his kids go to mass and play soccer. On Sundays my kids set up for the Hope Dinner at my church and study art at the museum. But one thing he and I have always had in common is robust imagination. People with imagination tend to have an easier time valuing and enjoying diversity. I have come to recognize that it is his imaginative powers, as much as his love for a sister, that have moved my brother to "throw down" with truly knowing and loving his nephew (my son) who has Aspergers (a disorder on the Autism Spectrum)

Tuesday, December 27, 2011

Medical-Legal Partnership Will Aid Families After Receiving an Autism Diagnosis

EDISON, N.J. -- Almost one out of every 94 children born in New Jersey is diagnosed with Autism Spectrum Disorder.
Autism Spectrum Disorder becomes apparent in early childhood.
Those affected process information and perceive the world around them in a different way.
Autism is not caused by emotional disturbance or bad parenting, according to research.
Its root causes remain undiscovered.
Dr. Gary McAbee, director of pediatric neurology at the New Jersey Neuroscience Institute at the JFK Medical Center in Edison, is heading an effort to create a medical-legal partnership designed to help patients and families sort through the various legal matters that follow a diagnosis.
McAbee also is a lawyer. He said this has made him aware of issues that are legal and not medical in nature.

Family Saves Kids with Down Syndrome

Amazing story from ABC World News Tonight.

Tucked away behind the white walls of an orphanage in the eastern Ukrainian city of Donetsk, Kareen had no inkling of the life that awaited her.
At 4 years old, her fate was seemingly sealed. Within a matter of months, Kareen was scheduled to be transferred to an adult mental institution, where she would live out her life with no hope for a family or an education.
But one picture on the Internet of the little girl with Down syndrome was all it took for a 30-something Utah couple with three daughters at home to fly across the globe to bring her home. They knew virtually nothing about her, except the life of neglect she likely faced if left in her native Ukraine.

Adults with Autism Testing Software

We've covered this story before, but this TV report just brings it to life. Just a great company doing great things.

Aspiritech is a non-profit organization based out of the Chicago area that specialized in finding software bugs. It's made up of a unique team of workers -- young adults with autism.

Treating 'Fragile X Syndrome' Autism Symptoms

You've probably never heard of it, but one in three kids with autism has Fragile X Syndrome. It's a disorder involving chromosomes that can be diagnosed while your baby's still in the womb. Now a new treatment is helping kids with Fragile X get rid of some of the symptoms that affect them developmentally.
Holly is her mom's little princess. But this girl's fairy tale started with a scare. While pregnant with Holly, Vicki Davis found out she was a carrier of Fragile X Syndrome.
"I had never heard of it. I had no clue what it was," said Vicki.
It's a mutation of a gene on the X chromosome that leads to a lack of protein production, critical for development. It's one of the most common causes of mental retardation.

When Children with Autism Grow Up

Susan Senator is a writer in Massachusetts and the author of “The Autism Mom’s Survival Guide” and “Making Peace With Autism.” This column first appeared in The Washington Post.

MADISON, Conn. -- I’m tired of being called brave. But being the mom of a deeply autistic young man of 22, I can’t avoid it. Because I survived. Ever since Nat’s birth, in the Autism Stone Age of 1989, I have had to be a Saber-Toothed Tiger Mother — or at least pretend to be one. From finding the right doctors to getting my town to do right by him, to also doing right by my other two sons, I have always had to be strong — or feign strength. No one has real answers. They didn’t then, and they don’t now. It has always been up to my husband and me.
I never thought that figuring out autistic adulthood would be the same way. Now that Nat has finished school, I feel like I am right where I started, the diagnosis days: grieving, confused, panicked. I’m sad because I miss the comfort and safety of the old routines.

Monday, December 26, 2011

Practice Flights Helps Kids with Autism

PHILADELPHIA -- Air travel horror stories typically involve lost luggage, missed connections and overzealous security staff. But families affected by autism face other challenges in navigating airports and planes.
A Philadelphia program is bringing families, airport employees and airlines together to help autistic kids fly more comfortably.
Airports are loud, hectic places: blaring announcements, glaring lights and long lines can spell trouble for people with autism. They often can't tolerate noise, bright lights and close quarters.

Sunday, December 25, 2011

Navigating Love and Autism

GREENFIELD, Mass. — The first night they slept entwined on his futon, Jack Robison, 19, who had since childhood thought of himself as “not like the other humans,” regarded Kirsten Lindsmith with undisguised tenderness.
She was the only girl to have ever asked questions about his obsessive interests — chemistry, libertarian politics, the small drone aircraft he was building in his kitchen — as though she actually cared to hear his answer. To Jack, who has a form of autism called Asperger syndrome, her mind was uncannily like his. She was also, he thought, beautiful.
So far they had only cuddled; Jack, who had dropped out of high school but was acing organic chemistry in continuing education classes, had hopes for something more. Yet when she smiled at him the next morning, her lips seeking his, he turned away.
“I don’t really like kissing,” he said.
Kirsten, 18, a college freshman, drew back. If he knew she was disappointed, he showed no sign.
On that fall day in 2009, Kirsten did not know that someone as intelligent and articulate as Jack might be unable to read the feelings of others, or gauge the impact of his words. And only later would she recognize that her own lifelong troubles — bullying by students, anger from teachers and emotional meltdowns that she felt unable to control — were clues that she, too, occupied a spot on what is known as the autism spectrum.

Wyoming Bill Seeks to Address Wait Time for Services

CASPER, Wyoming -- Like most 27-year-olds, Melissa Dixon doesn’t want to live with her parents.
She was born with fetal alcohol syndrome, a condition that affects her motor skills and ability to understand certain things. But she craves independence and often gets frustrated that she’s still at home.
“It makes her feel like she’s still a little kid,” said D.J. Dixon, her adoptive mother. “And she’d prefer to be around people who have more in common with her.”
Her parents applied to Wyoming’s Home and Community Based Waiver Program, which provides services for people with disabilities. For someone like Melissa, the waiver could pay for an assistant who helps her with social skills and job training.
Melissa has been stuck on the waiting list for a year and a half. She’s not alone. There are more than 450 people waiting for adult, child or brain-injury waivers, state figures show. The time between application and assistance for adults routinely exceeds two years.

Center Provides Parents with Support

SALEM, Oregon -- Faint cries and whimpers are heard from a back bedroom at Louis and Tami Montemayor's Salem home. Their son, Gabriel, awakens from an afternoon nap, partly confused and not yet fully awake.
He curls up in Tami's lap, ready for a bottle.
At 3 years old, he's nonverbal, can't eat solid foods and has sensory and anxiety issues, among other health problems.
"We manage and take care of his needs when he's ready — not at our pace," Louis Montemayor said. "It has to be at his pace with this child. It's concerning, it's hard and it's taken a lot out of us."
Learning how to care for a child with Down syndrome is an ongoing challenge, but the Montemayor family finds strength and support at Juntos Podemos/Together We Can Family Center in northeast Salem. There, they connect with other local families who have children with developmental disabilities.

A Home for Holidays and Beyond

Merry Christmas to all

COLUMBUS, Ohio -- F  or the first time in her life, Stacey Baldwin will not spend Christmas with her grandmother. 
After raising Stacey and Stacey’s three sisters, Granny learned in the spring that she had cancer. She died in August. 
The death of someone who was virtually a parent would be traumatic for anyone but doubly so for Stacey Baldwin, who is developmentally disabled and unable to live on her own. For her and others like her, a change of address can be a monumental proposition.
Despite her grandmother’s death, the 21-year-old isn’t spending the holidays alone or in an institution.

Saturday, December 24, 2011

Study: Ohio Faces Medicaid Challenges

COLUMBUS, Ohio -- As skilled nursing facility (SNF) providers across Ohio face 2012, a new report reveals the depth of their financial challenges. Medicaid, the health program for low-income seniors and individuals with disabilities, underfunded Ohio SNFs by $262 million, or $14.31 per patient per day, in 2009. The report projected those figures to rise to $330 million and $18.23 per patient per day in 2011, but those calculations were done for Fiscal Year 2011, which did not take into account the Medicaid rate cut of nearly $10 per day imposed on Ohio SNFs by the state budget bill, House Bill 153. This cut took effect for Fiscal Year 2012, which began July 1, 2011.

At Christmastime, Autism Creates Family Struggles

GAINESVILLE, Fla. -- When Suzanne Holman takes her two children, Alex and Will, to see Santa Claus, she waits in the line while Will rides the escalator up and down with his father.
Will, 5, is too fidgety to wait so long, so the escalator keeps him entertained without overloading his senses.
Will is autistic, which poses special challenges around Christmastime. The disorder affects the brain's normal development of social and communication skills.
"We usually have to prep Santa and his helpers to make sure he understands this is an autistic child and there may be some issues with that. Santa's scary to him," Flowery Branch resident Suzanne Holman said.

A Voice of Inspiration

It was a miracle as far as Jamie and Kelley Murphy are concerned.
Their son, Micah, who is autistic, could not speak until he was 6 years old. He didn’t say “Mama” until he was 11.
But at the age of 13 or 14, Micah started singing. The song he chose was Jesus Loves Me.
Today, 16-year-old Micah travels and sings with his mother, who shares their testimony with congregations across the country.

Thursday, December 22, 2011

UC Davis Autism Campaign Goes Statewide

SACRAMENTO, Calif. -- A statewide billboard campaign has been launched focusing on the UC Davis MIND Institute's efforts to develop improved treatments for children with autism spectrum disorders.
The billboards depict a young child and state: "Making breakthrough discoveries in the causes of autism," and then provide contact information for the MIND Institute, which was founded in 1998 to coordinate research into autism and other disorders.
The billboards were made possible through the support of the California State Outdoor Advertising Association (CSOAA), which contributed $50,000 to the enterprise.

School Accused of Putting Student with Autism Into Bag

LOUISVILLE, Ky. — A 9-year-old autistic boy who misbehaved at school was stuffed into a duffel bag and the drawstring pulled tight, according to his mother, who said she found him wiggling inside as a teacher's aide stood by.
The mother of fourth-grader Christopher Baker said her son called out to her when she walked up to him in the bag Dec. 14. The case has spurred an online petition calling for the firing of school employees responsible.

Teaching Speech to Nonverbal Children

Interesting blog item by Kathie Harrington.

How to teach speech to nonverbal children with autism is a blog I am sure you've all been waiting to read. I wish I had a rainbow colored pill, a magical injection or a jarful of stardust to write that down in a recipe for you. No one person or program has all of the tools to make communication happen for all of the nonverbal children with autism. A poster session at ASHA, however, leads me back to ADVANCE for Speech-Language Pathologists & Audiologists.
"Approximately 90 percent of nonverbal children with no vocal imitation skills at the beginning of treatment are able to imitate some sounds or word approximations after a few VBT sessions," Dr. LorRainne Jones, PhD, CCC-SLP, wrote on her website.
Ninety percent -- that's a huge claim. What you'll see and what I like on Dr. Jones' website is the comparison chart between applied behavior programs and VBT. The results and cost between the programs alone is staggering.

N.J. Housing Plan Running Low on Funds

TRENTON, N.J. -- The Christie administration announced Wednesday that it has $5.1 million in commitments from 12 municipalities around the state, including Wayne, to use affordable-housing trust fund money to provide community housing for developmentally disabled adults.
When combined with an equal amount of matching state funds, the resulting $10.2 million pool should be enough to purchase 20 homes, state officials said. Each of those homes will house a number of people with disabilities.
The effort is part of a state plan announced last May by Department of Community Affairs Commissioner Lori Grifa to build and renovate enough homes for 100 developmentally disabled adults this fiscal year and 600 by June 2013.
But unless the Legislature allocates millions of additional dollars next year, the state will be unable to continue providing matching funds and will fall short of its long-range goal, Grifa noted.

Wednesday, December 21, 2011

Connecticut Eyes Shift in Service System

HARTFORD -- Connecticut's dual system of public and private services for the developmentally disabled is very costly, according to a new legislative report presented Tuesday, which recommends eventually shifting to a fully private system.
But analysts for the General Assembly's program review and investigations committee did not recommend closing some key state-run facilities, including the five regional centers that now provide 24-hour residential care and the sprawling Southbury Training School, built in the 1930s, which halted new admissions in 1986.

Autism Rates Have Spiked, But Why?

Listen or read the transcript from NPR's Talk of the Nation.

According to the Centers for Disease Control, nearly one percent of U.S. children have some form of autism, 20 times higher than the rate in the 1980s. Alan Zarembo of The Los Angeles Times and clinical psychologist Catherine Lord discuss what's behind the growing number of diagnoses.

Lincoln Couple Files Appeal Against School

LINCOLN, Neb. -- A Lincoln couple is appealing a federal lawsuit they filed against Lincoln Public Schools over the education plan for their son, who has autism.
U.S. District Judge Laurie Camp ruled in favor of LPS in the lawsuit filed by Chrissy and Matt McNair.
The couple alleged the district violated federal education law by not adopting a plan devised for their then 10-year-old son, Luke, by experts at a research institute associated with Johns Hopkins University.
Camp found LPS complied with federal law because it took the plan provided by the institute into consideration, even though it didn't adopt all of its recommendations.

Tuesday, December 20, 2011

A Letter to Santa From an Autism Mom

I can't say I've been a good girl this year. Let's just say my house has been cleaner. I can't even remember what the flooring looks like in that room with those big laundering vessels. I've been horrid about returning phone calls. Unless one has a Dr. or Pr. in front of their name and an RN, MD, and MS after, they may wait weeks for a returned call. I forget about play dates for my neurotypical kids. I've abandoned polite society, so it seems. Time previously spent executing thank yous on expensive stationary is now spent on food preparation. Turns out my son Noah is sensitive to just about everything one can buy at the grocery store. Yes, even rice. Your standard cracker. Juice box. I have to make everything he ingests from scratch with my own two hands. Huge learning curve for someone who considers Starbucks a food group.

Families Struggle to Cope with Autism

GREENWICH, Conn. -- Nestled in the pews of a Greenwich church for the First Communion ceremony of her 9-year-old son last summer, Brenda Landsman gazed with bittersweet longing at the line of little girls, twirling in white dresses as flowers dangled from their hair.
Landsman's 10-year-old daughter, Katie, would not be able to participate in this sacred ceremony of the Catholic faith because her autism rendered her incapable of understanding the concept of "Jesus' love for her," the pastor said.

Monday, December 19, 2011

State Seeks To End Sheltered Workshops

DERBY, Conn. -- A 33-year-old Shelton woman may lose her job at the start of the new year along with over 80 fellow clients if the state succeeds in thinning the amount of people employed in “sheltered” workshops around the state.
Jacelyn Hoha works at VARCA , Inc., located at 5 Coon Hollow Rd. in Derby. The private, non-profit manufacturing factory offers developmentally and intellectually handicapped individuals with employment opportunities.
This past October, the State of Connecticut Department of Developmental Disabilities (DDS) released the initial draft of their Five-Year Plan to address the needs of the clients they serve, like Jacelyn. One of the plan’s main goals is to “decrease the number of individuals in sheltered workshops and day habilitation programs.”

Bond of Friendship Spans 70 Years

SOUTHBURY, Conn. -- The late morning sun was pouring through the window of the TV room at Southbury Training School when Belton "Sunshine" Antrum and Donald Gibson plunked down next to each other on a plush green couch.
It was Thursday, and the pleasant aroma of turkey soup wafting from down the hall was but one clue that lunch was about to be served.
Antrum, 85, and Gibson, 88, don't often eat their noontime meal at home during the week.
The bus comes early to pick up these two men, best friends since they were teenagers.
It whisks them off to Waterbury so they can get in some exercise, take a trip to the mall, go on a picnic or meet up with friends.
Never, however, does one man go without the other.

Illinois Focuses on Affordable Housing

SPRINGFIELD, Ill. -- Illinois has been criticized in the past for placing people with developmental disabilities in state-run institutions. Mental health advocates and those concerned about the state's dismal financial situation have criticized the practice as being bad for the disabled and for the budget. Now, Gov. Pat Quinn is looking to make some changes.
Quinn announced Friday that he would set aside $15 million from the "Illinois Jobs Now!" program to launch "Home First Illinois," an affordable housing program for people with disabilities, according to the Illinois Housing Development Authority.

Holidays Can Be Unsettling Season for Some

When Brady's having a day like that, there's no visiting relatives or friends. Even on Christmas Day.
Brady, 16, was born prematurely, weighing in at a mere pound and a half. He's nearly blind and has other physical problems. But the one that changed the Cook family's lives is autism.
And as many parents of children who have an autism spectrum disorder (ASD) can tell you, Christmas is a challenging time of year.

Sunday, December 18, 2011

Dealing with Autism and Fearing the Future

STATEN ISLAND, N.Y. -- Dyane Irvine's son and daughter, Billy and Rachel, were diagnosed with autism when they were 2 years old. But had the twins, now 13, been born two decades earlier, Ms. Irvine is confident they would not have been diagnosed with autism, and would have missed out on the life-altering therapy they received as very young children.
"They wouldn't have been given the right attention," she said. "Who knows what the diagnosis would have been?"

Friday, December 16, 2011

Programs Lacking for Adults with Autism

Delia O'Mahony moved back to New Jersey a decade ago seeking better educational opportunities for her autistic son, Jonathan.
"We were living in the country in Ireland and they didn't know much about dealing with autism," said O'Mahony, who returned to the U.S. after her Irish husband died of leukemia.
But when Jonathan turned 21 four years ago, she was disappointed to learn that programs for autistic adults seemed just as scarce here.

Autism Hidden in Plain Sight

Last of four-part series from the Los Angeles Times

When autism researchers arrived at Norristown State Hospital near Philadelphia a few years ago, they found a 63-year-old man who rambled on about Elvis Presley, compulsively rocked in his chair and patted the corridor walls.
Ben Perrick, a resident of the psychiatric institution for most of his life, displayed what the University of Pennsylvania researchers considered classic symptoms of autism. His chart, however, said he was schizophrenic and mentally retarded.
Delving into the file, the researchers learned that as a 10-year-old, Perrick had seen Dr. Leo Kanner, the psychiatrist who discovered autism. In his notes from 1954, Kanner described Perrick as “a child who is self centered, withdrawn, and unable to relate to other people,” and recommended that he be committed.
Later, other doctors relabeled Perrick. The autism diagnosis was forgotten.

Thursday, December 15, 2011

Popular Autism Therapy Mixes Warm Praise and Firm Guidance

Continuing autism series from the Los Angeles Times.

SEAL BEACH, Calif. -- It's 10:30 a.m. on a Tuesday, an hour and a half into Michael Thomson's daily therapy. Three and a half hours left to go.
Lined up before him are three plastic blocks and a toy hippopotamus.
"Which one is different?" asks the therapist, seated on the carpet with him.
When he answers correctly, the therapist lights up with approval: "Good job! You are so, so smart."
The drill continues with other objects. Each correct answer allows him to add a piece to a simple wooden puzzle. Its completion entitles him to the prize of his choosing: A few minutes playing with a toy telephone.
Michael, nearly 3, has been receiving up to 29 hours a week of "applied behavior analysis," or ABA, since he was diagnosed with autism more than a year ago. The therapy is designed to steer children away from troublesome behavior and instill social and communication skills.

Good and Bad News on Aging in Place

Government funding for programs to support aging in place was still growing through 2008, but much more slowly than in the past. At the same time, states were making it harder to enroll, limiting benefits, and forcing people to wait longer before they could participate in these programs. And all that was happening before Medicaid home care faced major budget cuts in the face of the Great Recession and the collapse of state tax revenues.
A new study by the Kaiser Family Foundation’s Commission on Medicaid and the Uninsured found that while overall spending on home and community-based services grew from $17 billion in 1999 to $45 billion in 2009, the rate of growth slowed sharply after 2004. Annual home and community payments rose by an average of more than 13 percent from 1999 to 2004, but by less than 9 percent since. And in 2008, funding increased by only about 7 percent.
Despite this shift to home-based services, less than half of the program’s dollars were geared to these benefits in 2009, when 57 percent of Medicaid dollars still went to nursing home care.

Opinion: Congress Must Not Cut SSI

If you read one story today, make it this column by Timothy Shriver chairman and chief executive officer of the Special Olympics.

Americans have been increasingly alarmed by the prevalence of bullying in our nation’s classrooms and communities — especially the bullying of children with intellectual and developmental disabilities. They’re the most bullied of all — nearly three times more likely than their nondisabled peers to be humiliated and abused.
It’s no secret why they’re more likely to be victims: They’re more vulnerable, easier to target, less likely to speak up. Now, that same vulnerability is leading this population to face another group ready to push them around: their own members of Congress.
Congress is now undertaking the unenviable task of restoring our nation to fiscal health. Amid fierce partisanship, record-setting deficits, a prolonged recession and widespread cuts to nearly every budget category, Congress is considering dramatically cutting — or even eliminating — the children’s Supplemental Security Income program.

Follow-Up Audit Show N.J. Is Improving

TRENTON, N.J. — The state Division of Developmental Disabilities (DDD) has recouped wasted dollars, tightened its travel expenditure policy and strengthened its monitoring of contracts in response to a 2009 audit by the Office of the State Comptroller.
A follow-up review conducted by state comptroller’s office
, released today, found DDD officials have fully implemented seven of the nine recommendations contained in the initial audit and have partially implemented the other two.

Wednesday, December 14, 2011

It's Hard to Tell Who's Having More Fun

BIRMINGHAM, Mich. -- It's not often that Jim Ryan, the retired 6th U.S. Circuit Court of Appeals judge, is seen on a dance floor, much less doing the hokey pokey with a young blonde.
But on Friday night in Birmingham's St. Regis Elementary School's gymnasium, the judge could not say no to a petite woman with sparkling eyes and a smile just this side of heaven. She merely implored with a small, outstretched hand and he melted like butter. Seconds later, the man with four honorary law doctorates to his name was shaking it all about. All the while, his wife, Loretta Nagle Ryan, watched from a distance, smiling.
This is what happens when Angels' Place, an organization of group homes for adults with developmental disabilities, throws a party.

Blinking May Yield Clues About Autism

When and why children blink may provide researchers some important clues about how children with autism process and take in information.
Although it may not feel like it, blinking interrupts what we are watching. If a story or scene is engrossing, we can keep our eyes peeled. This is called blink inhibition. There are key differences between toddlers with and without autism spectrum disorder and when they blink their eyes.
The new finding appears in the Proceedings of the National Academy of Sciences.

Tuesday, December 13, 2011

His Son's Amazing Memory Helps Him Connect with Others

Column by Tom Fields-Meyer, a Los Angeles author and journalist. This essay is adapted from his new memoir, “Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love From His Extraordinary Son” (New American Library).

My son Ezra was 4 or 5 when he began asking people their birthdays. At first it seemed like a typical child’s question. But then months later he would encounter acquaintances — or even whole families — and reel off the birth months with perfect recall as he pointed at each person.
“Steve, April. Janice, November. Shayna, August.”
Driving him to school one morning, I heard him in the back seat reciting what at first sounded like random dates and names. Then I realized what he was doing: listing the months in calendar order, each followed by the names of everyone he had encountered whose birthday fell in that month.
It was an early glimpse of what I came to realize was an extraordinary — even superhuman — memory. Ezra, now 15, has high-functioning autism. Experts will tell you that the disorder’s most significant characteristic is difficulty communicating and forming relationships. Ezra knows he has autism, but to him one of its primary characteristics is that he can remember things better than most people.

In California, Clashing Views on Transition

SACRAMENTO, Calif. -- Either the state's transition to managed care is going great, or it's a confusing mess.
That would depend on who's talking. At a joint oversight hearing last week, convened by the Senate and the Assembly committees on health, government officials outlined a generally positive picture for the effort to move Medi-Cal seniors and people with disabilities (SPDs) from Medi-Cal fee-for-service to managed care.
"The transition of seniors and people with disabilities into managed care is part of the triple mandate from [the federal] HHS," according to Jane Ogle, deputy director at the Department of Health Care Services. "Better health, better quality and more cost-effective care."

Opinion: N.Y. Families Speaking Up Now

It's hard to protest something that hasn't happened, but the families of people with developmental disabilities have learned that it is never too soon to speak up.
"Andrew wants his own home," says Leslie Hulbert, of Victor, Ontario County. Her 25-year-old son, who has autism, has been on a waiting list for four years for a spot in a residential adult home.
Leslie, like other parents of adult children with developmental disabilities, has been her son's advocate since he was a toddler and his condition was first diagnosed. She will be his advocate for the rest of her life — which is why she's advocating now for a home, a place where Andrew, who is learning the baker's trade, can live safely with 24/7 supervision and care.
Across the state, nearly 12,000 adults are waiting for placements in group homes, about 1,300 in the Finger Lakes region, with about 400, like Andrew Hulbert, seeking spots through Heritage Christian Services. There is a state moratorium on construction of new residential homes, and the state is developing new policies and procedures for housing disabled adults, including those who have been in state-run developmental centers.

Autism Research Network Shaping Up

Autism research efforts are getting a leg up with a new public-private partnership designed to make data on thousands with the developmental disability more available for study.
The National Institutes of Health said Monday that a new collaboration with Autism Speaks will create what’s believed to be the largest single source of research data on people with autism to date.

Services Go to Those Who Fight Hardest

Part 2 of the Los Angeles Times' autism series.

LOS ANGELES -- From the day her son was diagnosed with autism nine years ago, Stacie Funk has made it her full-time job to find him the best possible help. Hiring lawyers and experts to press her case, she established herself as a mother whose demands could not easily be dismissed.
The result has been a bounty of assistance for Jonah: A behavioral therapist who works with him at home and comes along on family outings, a personal aide at school and specialists to design his curriculum, improve his speech and refine his motor skills.
So far, the state of California and the Los Angeles Unified School District have spent at least $300,000 on specialized services for Jonah.
Now 13, he bites his hands, pinches his younger siblings and is easily flustered by changes in routine. But his mother is proud of the progress he's made — his ability to express his needs, read aloud and surf the Internet for movie trivia.
The outside support, she said, helps hold the family together.

Monday, December 12, 2011

Study: World's Smallest Babies Defy Odds

Two women who hold records for being the smallest surviving newborns are now doing fine and have developed normally, despite being born months premature and weighing about as much as a smart phone after birth, according to doctors where both babies were born.
Madeline Mann is now 20 and a college student. When she was born in 1989, at nearly 27 weeks, she was the world's smallest surviving infant at 9.9 oz. In 2004, Rumaisa Rahman, a twin, weighed just 9.2 oz when she was born at nearly 26 weeks and became the world's smallest surviving newborn. She still holds that record today.
In a follow-up study published in the journal Pediatrics, doctors at Loyola described the girls' progress since their birth. Both Madeline and Rumaisa developed normal motor and speech abilities and so far, have no chronic health problems. They are also both much smaller than peers their age.

Sunday, December 11, 2011

Arkansas Considers Proposal for Centers

LITTLE ROCK, Ark. — A proposal to create developmental disability service centers across the state has caused a stir among the mentally disabled and their families and caregivers, some of whom say the idea sounds like a way to cut costs at the expense of the most vulnerable Arkansans.
The author of the proposal says it is only a concept at this stage and insists the state would not implement changes that negatively affect services.

A Team Helps Child Flourish

LINTON, Colo. -- Gretchen, 6, began her first year of kindergarten at Linton Elementary School in August. She is a special needs student with Down syndrome excited to join the ranks of a traditional classroom.
On Monday, the kindergartner will celebrate her 70th day in the classroom, a milestone that her parents, Jeffrey Coon and Linda Trentman, credit to the team of teachers and professionals who work with Gretchen daily.
"We have been very impressed with the number of people involved in Gretchen's education on a daily basis," Jeffrey Coon said."Linda and I are both very thankful for all of these individuals and feel good sending her to such a wonderful environment each day."

Saturday, December 10, 2011

Discovering Autism: Unraveling an Epidemic

First of a four-part series in The Los Angeles Times.

The U.S. Centers for Disease Control and Prevention estimates that nearly 1% of children across the country have some form of autism — 20 times the prevailing figure in the 1980s. The increase has stirred fears of an epidemic and mobilized researchers to figure out what causes the brain disorder and why it appears to be affecting so many more children.
Two decades into the boom, however, the balance of evidence suggests that it is more a surge in diagnosis than in disease.
Factors that have nothing to do with biology can explain much of the steep increase in cases around the world: an expanded definition of autism, spreading awareness of the disorder and an improved ability to distinguish it from other conditions.

These Horses Offer Help and Comfort

SAN ANTONIO -- The employees and volunteers at Triple H Equitherapy Center have seen how horses can help make miracles happen.
They've watched a 72-year-old stroke patient who barely could walk learn to ride. They've witnessed an autistic child say the word “mom” for the first time and ask her if he could take home the horse he'd just ridden.

She Finds Refuge in Art

NEW YORK - Leironica Hawkins recalls always having “social problems, sensory issues and bouts of depression,” while growing up in Crown Heights, Brooklyn, as well as behavioral tics like self-rocking and involuntary hand twitches. Finally, at age 28, she was given a diagnosis: Asperger’s syndrome, a form of autism, for which she has never received treatment.

Friday, December 9, 2011

Radio Station Recognized for Hiring Record

OK, we stray to Canada for the feel good story of the day!

AMHERST, Nova Scotia -- Listeners to Tantramar FM Community Radio might have been surprised that the station was honoured recently for employing persons with disabilities. Anyone listening to Sam Hunt on the air would never notice he has a disability.
Hunt, a 22-year-old Tatamagouche native, has been working as an assistant to operations manager Ron Bickle at the station since September, performing a variety of tasks, including broadcasting.
He also happens to be afflicted with cerebral palsy, but it does not affect his work at the station.

Tough Holiday Tradition in Massachusetts

Came across this column by Gary Blumenthal, president and CEO of the Association of Developmental Disabilities Providers, based in Framingham, Mass.

So many of us look forward to the holidays for the chance to share special times with friends and family, to toast the past months and relish the opportunities in the new year ahead. It is a time of hope, and the optimism many feel is real and near.
But that is largely not the case for the thousands of people living with significant disabilities in Massachusetts, nor is it for their families and friends, who number in the hundreds of thousands. For them, the change of the calendar means repeating the same frustrating steps as previous years – the ritualistic begging and pleading to the Commonwealth’s leaders to fund necessary supports and services that they need to survive.

Traffic Fumes Linked to Higher Autism Rate

Tiny carbon particles commonly found in car and truck exhaust have long been researched for their role in heart disease, cancer, and respiratory illnesses. Now an increasing number of studies are linking vehicle exhaust to other serious health problems.
Studies in New York, Beijing, Boston, and Krakow, Poland show that children in high traffic areas do worse on intelligence tests and have more emotional problems than children who breathe cleaner air.
In a California study, children born to mothers living within 1,000 feet of a major road were twice as likely to have autism.

Thursday, December 8, 2011

Arkansas Advocates Fear Medicaid Overhaul

LITTLE ROCK, Ark. — Advocates for the developmentally disabled expressed concerns to legislators Wednesday that an overhaul of the state’s Medicaid system could hurt some mentally disabled Arkansans.
Katy Carver, executive director of the Arkansas Waiver Association, told the Hospital and Medicaid Study Subcommittee of the Arkansas Legislative Council that a proposed model for creating developmentally disabled centers across the state could lead to cuts in services and the creation of a new level of bureaucracy between patients and the care they need.
Charlie Green, director of the state Division of Developmental Disabilities, told the panel that those concerns are groundless.
Gov. Mike Beebe has received a go-ahead from the U.S. Department of Health and Human Services to develop a proposal for overhauling the way health care providers in the state are reimbursed for their services. Beebe has said he wants to switch from a system in which providers are paid for each service to a system in which providers are paid for bundled episodes of care.

Opinion: Calif. Needs to Set Priorities

As the Department of Finance gears up to release its revenue forecast that will decide whether or not California will implement “trigger” cuts, Californians with developmental and intellectual disabilities, once again, find themselves as the bull’s-eye on the state’s budget dart board. In these difficult economic times, the state can only fund the highest priorities and supporting people with developmental and intellectual disabilities must be one of those priorities.
If you recall, the two tiers of trigger cuts are automatic mid-year budget reductions totaling almost $2 billion from education and social services. The cuts were a kind of safety mechanism incorporated into the June budget deal to deliver a state budget “balanced” by overly-optimistic revenue projections. The budget failed to develop any long-term, sustainable plans to address California’s chronic budget shortfall and in doing so, nearly guaranteed that the trigger cuts would be implemented.

How to Afford an iPad for Holidays

Blogger Laura Shumaker on life with her son Matthew, who has autism.

In my experience, the Christmas and holiday wish lists of children on the autism spectrum are eclectic (to say the least).
Some of the items on Matthew’s lists over the years have included a drain, a shopping cart, and a chainsaw. (No, he did not get the chainsaw.)
For the second year in a row, parents are scrambling to find ways to to afford an iPad, because of the many ways that it helps children with autism.

Autism Screening Urged for Young Children with Epilepsy

BALTIMORE – All young children with epilepsy should also undergo screening for autism spectrum disorders and developmental delay, a study has shown.
In a pair of pediatric epilepsy units, 77% of children screened positive for development delay, and 36% screened positive for autism. About one-third of those children were previously undiagnosed.
Because the conditions often occur concurrently, a screening of children 5 years and younger can make a life-changing difference, Anne Berg, Ph.D., said at the annual meeting of the American Epilepsy Society.

Wednesday, December 7, 2011

Social Network Launched for Parents

One in every 110 children is diagnosed with autism, so you would think that by now there would be more infrastructure to help parents navigate the murky waters of autism. But the truth is that too often, parents receive a diagnosis and are left to fend for themselves, with little to no understanding of what kinds of resources are available to them. Depending on where you live, you might be able to locate a nearby support group, but there’s no guarantee.
To help parents locate a stronger foothold in the uncharted terrain of autism, MyHealthTeams announced Tuesday the launch of MyAutismTeam, a social network designed exclusively for parents of autistic children.

Autism and Health Care

Family can help calm a child with Autism. So often we may find ourselves focused so much on one particular disorder or illness, and forget that people can still get common colds and cavities. And that's the same for my son. I often find myself so caught up on trying to teach him behaviors, focus on speaking and spelling (he's becoming a wizz on the iPod Touch virtual keyboard), that I forget that he has other needs too. And, unfortunately for him, he inherited my baby teeth and now has at least one massive cavity.
Because my son has Autism and is non-verbal, he can't tell us that his jaw hurts when he tries to eat. So we need to rely on body language to help guide us. It's not easy, because any behavior caused by continuous pain could also be caused by his need for constant deep pressure. It's difficult to tell what the problem is, and how to best address it. It wasn't until I started looking into his mouth that I noticed a large cavity forming.

Joplin Couple Donates $3 Million to Rebuild Local Autism Center

JOPLIN, Mo. — Holding back tears, Amanda Dillard explained how the instructors at the Ozark Center for Autism had helped her autistic daughters, Reagan and Savannah, progress in ways she never dreamed possible.
On Tuesday, she told Bill and Virginia Leffen, of Joplin, that their donation of $3 million to fund the rebuilding of the center means more to the parents of autistic children than just the construction of a building.
“This donation gives us hope,” she said. “I can’t say enough about that.”

Tuesday, December 6, 2011

Fetal Exposure to Epilepsy Drug More Likely to Have Autism, New Study Finds

Children exposed to the epilepsy drug valproate have a nearly three times higher risk of having an autism spectrum disorder, new research finds.
Researchers in Denmark used national birth data that included nearly 656,000 children born in that country between 1996 and 2006 to 428,000 women. Using a national prescription drug registry, they identified women who had filled a prescription for valproate (Depakote) shortly before pregnancy through the day of the child's birth.

Opinion: N.J. Struggles with Housing Issue

TRENTON, N.J. -- The plight of New Jerseyans with developmental disabilities has received considerable media attention in recent weeks. Perhaps the most immediate burning issue regarding this population is the housing problem.
In many cases, the parents of adults with developmental disabilities are elderly and unable to continue to care for their offspring with special needs. Most tragically, the parents often die before alternative living arrangements can be made. In fact, the current State Administration inherited a waiting list for housing for adults with disabilities. Such adults can expect to wait seven or more years before such housing become available.
The State, in attempting to deal with the situation, has set a policy in which the home of the parents of the disabled person will be made more accessible, in lieu of an outside housing placement. The obvious problem is that the parents continue to become older, more frail, and inevitable pass away with the vulnerable, disabled person without housing. As this occurs, the waiting list continues to become longer and longer, as additional applications for housing are made.

Monday, December 5, 2011

Prozac May Reduce Adult Autism Symtoms

NEW YORK, N.Y. -- The antidepressant Prozac may alleviate repetitive behavior and obsessive-compulsive symptoms in adults with autism, reducing these defining symptoms of the disorder, according to new research.
The research, which included 37 high-functioning autistic adults, mainly diagnosed with Asperger's syndrome, followed participants for 12 weeks. Taking Prozac (fluoxetine) doubled the chances that a patient would show overall improvement, measured by their clinicians. Half of the participants taking Prozac had significant reductions in obsessive-compulsive symptoms, compared with 8% taking placebo. Side effects were mild to moderate and participants taking Prozac did not show increases in suicidal thoughts or ideas.
"Repetitive behavior is a core symptom of the illness," says lead author Dr. Eric Hollander, medical director of the Autism and Obsessive-Compulsive Spectrum Program at Montefiore Medical Center in New York, explaining that "from a very early age, these children have rituals and routines. For example, they like to line up their toys and they get very bent out of shape if there is any deviation."

Series: New Jersey Failing the Disabled

Too frequently, they are New Jersey's forgotten residents: Adults living with severe, chronic mental or physical impairments such as autism, cerebral palsy, epilepsy and spina bifida. They are the developmentally disabled among us, our brothers and sisters, our sons and daughters.
Roughly 2,500 of these 40,000 adults statewide reside in one of seven state-run, expensive-to-operate developmental centers. Some 27,000 live at home, where often they are cared for by aging parents with health problems of their own. Approximately 12,000 more live in group homes or independent apartments run by non-profit agencies specializing in care for the disabled.
Meanwhile, nearly 8,000 disabled adults are on a long waiting list for services ranging from training to a place in a community-based group home, which reformers see as among the best and most cost-efficient ways of providing adequate care.
And yet, as "Crucial Care at a Crossroads," Staff Writer Harvy Lipman's three-day series for The Record, indicates, by and large the state is falling down on the job of caring for its developmentally disabled adults.