Thursday, December 30, 2010

Making a Difference On and Off the Field

JACKSONVILLE, Fla. -- When Ben Miller started playing soccer, his older brother Jake was there with him. However, Jake, 14, wasn't kicking goals like 12-year-old Ben.
His autism kept him off the field so the team made him their "assistant coach."
"Not what any kid wants. They want to play," said Jake's dad, Eric Miller of Mandarin. And thanks to a special-needs field on Jacksonville's Westside, McGirts Creek Park on 118th Street, they are no longer relegated to the sidelines while other kids have all the fun.
Volunteers from San Jose Catholic School on Toledo Road have become a big part of the Miracle League, which provides recreational opportunities for children with disabilities from across Jacksonville, including Mandarin.

Feeling Confident and Successful with Help From a Four-Legged Friend

Now 19, Brentwood resident and longtime rider Sam Wright graduated from his favorite program when he reached adulthood.
At 22, Samoens, also known as Sammy, a Dutch warmblood and former jumping horse, is ready for greener pastures and a relaxing retirement.
Together, horse and rider took their final ride at Saddle Up!, a nonprofit therapeutic horseback riding program for children who have mental and physical challenges.
"Sam's face lights up when he goes there. He smiles the whole hour that he is there," said Wright's mother, Sheree. "He loves riding and loves horses. When he is riding, it is one of the few times when he is just like other kids — he is successful and confident."

Adults with Autism Face Many Struggles

LOS ANGELES -- 1.5 million people in the U.S. have autism. About 80 percent are under 22, and research shows most do note end up living independent lives.
Some call the number of kids who will become adults with autism over the next five years an autism tsunami. That's because most state and federal assistance programs for autism stop at age 22, leaving these young adults with no place to go.

Wednesday, December 29, 2010

Best Buy Finds a Dream Employee

JACKSON, Mich. -- Jackson High student Phil Woodard is every retail store manager's dream.
He is a reliable and witty 18-year-old who is blessed with a keen sense of humor
On Saturday mornings, he engrosses himself in up to a dozen computers at a time as part of a work-study program, making sure Best Buy customers have ready-to-use products, often configured to their personal needs and updated with the latest antivirus software.
"It's amazing to see what he can do, and I'm learning new things all the time," Geek Squad Agent Eric Nelson said. "I've seen things he can do that I never knew he could or expect him to do; like he works on all sorts of electronics."
One reason Nelson didn't know what to expect is because Woodard is autistic.

'I Don't Feel Challenged'

HEBRON, Ind. - A mild form of autism affects Giovanni Phan's comprehensive abilities.
But the developmental disorder doesn't affect the Hebron freshman's ability to wrestle, run, get good grades, and simply be a 'regular' kid.
"I don't feel challenged," Phan said.
Nor did he feel challenged when Hawks coach Todd Adamczyk asked him over the summer to give wrestling a try.
"Coach convinced me to do it," Phan said. "He said we didn't have a 103 on the team and they needed me."
Though he has never wrestled before, weighs 93 pounds and doesn't process moves and techniques as quickly as his teammates, Phan has won four matches. With eight forfeits, he sports a record of 12-10.

Learning to Fit In

PLAINFIELD, Ill. -- Juniors Myles Walters and Deontre' Brown stand before the class and demonstrate the proper way to greet another student.
They spread their fingers open and show how to perform a high five.
Not too hard, not too soft, they say. Just give the other person a firm slap.
The two students at Plainfield East High School then invite their classmates to practice how to do a high five with them, and they applaud them when they do it correctly.
Walters and Brown are among a group of student peer helpers, who assist special education students twice a week with the help of the school's speech-language pathologist and social worker.

Tuesday, December 28, 2010

Families Proud of Children's Progress

ROANOKE, Va. -- Little voices sing: "Five green and speckled frogs, sitting on a speckled log, eating some most delicious bugs. Yum, yum!"
Molly McConnell, 4, watches her twin brother, Peter, and mimics the motions to the song. Every few seconds, her eyes dart to the teacher in search of cues, almost as if the little girl is uncertain of what she is supposed to do.
Across the room, Audreanna Robertson, 5, is focused on the teacher leading the song; Audreanna knows the words and sings along, but her pronunciation is not fully developed.
Molly and Audreanna, who both have autism spectrum disorders -- neurological conditions that affect communication, social interaction and behavior -- have made great strides since featured in a pair of February stories in The Roanoke Times.
Now, the girls are among about a dozen 4- and 5-year-olds, with and without autism, who start the school day together at the Blue Ridge Autism and Achievement Center in Roanoke County.

An Uncertain Future Looms

Poignant piece by Gary Blumenthal, President and CEO of the Association of Developmental Disabilities Providers, that perhaps hits a little too close to home for many of us worried about the nationwide cuts that await our field. Blumenthal is a former member of the Kansas House of Representatives and was appointed last year by President Barack Obama as a member of the National Council on Disability, an independent federal agency that advises the president and Congress on disability issues.

As the father of three healthy, active and mischievous young boys, I often ask myself how my mother ever survived having five children.
Life for my mom, Blanche Blumenthal, was much tougher. Widowed in mid-life with five kids under 18, including my younger brother Steve, who had autism, she had to face schools, social service systems and a community ill prepared to welcome her or my family into the fabric of our hometown.

Obesity Study to Focus on Youth and Young Adults with Disabilities

CHICAGO -- While the nation's obesity epidemic is the target of many programs to combat it, few such programs embrace an often-overlooked subgroup -- adolescents and young adults with physical or cognitive disabilities.
"There's a higher rate of obesity in this population," says James Rimmer, professor of disability and human development at the University of Illinois at Chicago, and disability specialists need to know much more about the causes and consequences of this significant health risk.

Monday, December 27, 2010

Honoring a Son's Memory

CLIFTON PARK, N.Y. -- Gary Stewart delicately held his son Andy's hand Friday morning as he thanked everyone at the Spare Time bowling alley in Clifton Park.
Andy, 14, kept his head turned away as his father fought back tears. Stewart shook the hands of family and friends while clutching his son.
The manager at Spare Time assured Stewart that the entry fees from 76 people who sacrificed their Christmas Eve morning to honor the memory of Gary's other son, Bob Stewart, would go to Andy's school, St. Colman's in Watervliet.
Bob Stewart was four years older than Andy. He was always protective of his brother, who was diagnosed with autism when he was 2.

Teacher Shares Special Bond with Former Student

CARROLLWOOD, Fla. -- He's a kid in a candy store, although it's not bubble gum and lollipops making him gasp with delight. Tony Browdy, 21, instead is transfixed by air conditioner filters, patterned floor tiles and paint samples.
Tony is no kid, either, although his enthusiasm and gratitude are childlike as he charges through the Lowe's store in Carrollwood, his wonderland, with Judy Shargaa trailing behind. He stops and rubs Shargaa on the head to show his joy.
"He loves the texture of my hair," says Shargaa. "He says it feels like spider webs. Yeah, that's just the look I was going for."
It doesn't take long to pick up on the affection and easy camaraderie between the young man with autism and his warmhearted former teacher, who still tries to sneak in a lesson or two during their adventures. Shargaa first met Tony when he was a young boy who never spoke; she agreed to become a surrogate parent for him as he made his way through the school system. Later, she taught him at the Caminiti Exceptional School in Tampa.

Friday, December 24, 2010

Caren Zucker is a television producer currently working on a six-part series on autism for the PBS NewsHour with Robert MacNeil. I've had the opportunity to work with her and this is just a wonderful holiday perspective. Wishing everyone a Merry Christmas!

Can something that breaks your heart be a gift? For most parents working their way through their kids' Christmas lists, the question has to seem a bit odd, or besides the point. But when you're raising a child who has autism, it comes up for consideration. In fact, many of us raising kids with autism choose to see the condition as a rare sort of gift.
Not everyone, of course—because the truth is, autism in the family can sometimes make things painfully difficult. But I'm a natural optimist, a glass half-full sort of parent. I like to focus on what's good about autism: having a kid who is innocent and honest (sometimes to a fault), whose love comes without condition, and whose existence in my life has taught me the real meaning of patience.

Keeping Optimistic Amid Long Job Search

DOWNEY, Calif. – Twenty five-year-old Laia Jreisat, a lifelong Downey resident and Warren High School alum, has been searching for a job since 2008.
“And she’s still actively looking,” said Luana Acuna, director of vocational services at Arc of Southeast Los Angeles County. “We’re very optimistic. Right now, she’s training and gaining new skills. She hopes to find a job here in Downey so she doesn’t have to go far.”
“I’m good with fashion – I really want to work at Ross,” added Jreisat, a faithful participant of Arc, the nearly 55-year-old Downey organization that provides vital services and training for nearly 350 children and adults with intellectual and developmental disabilities.

Thursday, December 23, 2010

Cheerleader Is 'Star of the Show'

YORK, Pa. - Amber Delp doesn't need a cheerleading uniform to motivate others. She does it simply by being her enthusiastic self.
The 20-year-old has Down syndrome and is a cheerleader for the Central York High School varsity boys' basketball team.
The 4-foot, 4-inch, 80-pound senior started her cheerleading career recently with the team. Monday was her third game. "She's the star of the show," said Jacki Belker, 17.

Christmas Comes Early for Utah Family

HERRIMAN, Utah -- Lexi and Sophi traveled thousands of miles to be part of the Green family's live nativity this year.
In fact, their parents Jeremy and Christianne Green traveled to China to bring them home. They are the fourth and fifth special needs children adopted by the Herriman couple. Sophi, 2, was born without arms and has no fibula in her right leg. Lexi, 4, is blind.
As the family prepares to observe other traditions, such as driving through the elaborate light displays at Thanksgiving Point on Christmas Eve followed by a meal at Arby's, the actual holiday may be somewhat anticlimactic for Jeremy and Christianne.

Wednesday, December 22, 2010

Bracing for Cuts in Medicaid Health Services

Unfortunately, this may be a preview of what we can expect in the new year across the country. It is going to be rough going for a lot of folks.

SPOKANE, Wash. -- As January approaches panic is setting in for people who living with low incomes or are disabled and will have to live without several health services currently provided under Medicaid.
The shuttering of health services under Medicaid comes as part of the ongoing budget balancing act in Olympia that has shaved $80 million out of the state’s $4.6 billion budget shortfall.

Choir Welcomes Singers of All Abilities

This is the feel-good story of the day from the Chicago Tribune.

A slight boy with glasses, Chris Choe walked to the front of the choir room and raised his hand to signal for attention. The 16-year-old junior needed silence and support to rehearse the lines he would repeat in a week before an auditorium packed with students at New Trier Township High School.
For him, it wasn't just about nerves.
Choe has Noonan syndrome, a genetic disorder that can complicate speech and vocal articulation, among other symptoms. Introducing himself in a loud, clear voice to hundreds of his peers would be a challenge, but Choe knew he could rely for support on the High Five Choir, where students with special needs perform alongside general music students.

Children with Disabilities Not Portrayed Accurately in Books, Study Says

Despite an increasingly positive portrayal of disabilities in Newbery Award-winning books, they are not representative of the nearly 7 million children with disabilities attending U.S. public schools, say Brigham Young University special education researchers.
They published their study in the December issue of Education and Training in Autism and Developmental Disabilities.
"We are hoping that this will be a call to authors," said special education professor Tina Dyches, one of the co-authors. "We've got so many wonderful authors in the world, and we would love to see more inclusive characterizations in high-quality books, where kids with disabilities are being recognized for who they are and not just for the limitations of their disabilities."

Tuesday, December 21, 2010

Illinois Nursing Homes Escape Paying Fines

BLOOMINGDALE, Ill. -- In 2004, a 12-year-old boy with cerebral palsy became wedged between the mattress and protective padding of his bed at Alden Village Health Facility in Bloomingdale.
Nursing aides didn't immediately notice because the room was so crowded and cluttered, and within three hours, Sharif Khamissi was dead.
Illinois regulators hit the home with one of their largest penalties: a $50,000 fine. But in the end, the facility cut a deal with the state and paid just $10,000.

Texas Lawsuit Claims Many with Disabilities 'Trapped' in Nursing Homes

More than 4,500 people with intellectual and developmental disabilities are "trapped" in nursing homes providing inadequate care, according to advocates who filed a class-action lawsuit against Texas on Monday.
Two advocacy groups, the Arc of Texas and the Coalition of Texans with Disabilities, filed the lawsuit in U.S. District Court in San Antonio along with six individuals with intellectual and developmental disabilities.
The suit focuses on the approximately 4,500 people with disabilities living in nursing homes in Texas and alleges that thousands more are at risk of the same fate.
Most of those people would receive better care in a community-based facility or their own homes, but the state unfairly restricts access to the programs and services, according to the suit.

Monday, December 20, 2010

Children on Spectrum Struggle to Find Items

Children with autism may have a harder time than other kids searching for items, such as a particular food in the grocery store, or keys inside a house, a new study suggests.
The results were surprising, the researchers said, because previous work had shown that autistic individuals are often superior to others at searching for visual cues in a small-scale environment, such as a table top or a computer screen.
But the new study suggested that when the scale is larger, autistic individuals have impairments. The findings may explain part of the reason why some autistic individuals have trouble living independently, the researchers said.

N.J. Lags in Commitment to People with Dual-Diagnosis

MILLSTONE, N.J. — At least twice a week, panicked parents call Donna Icovino for help.
They’ve heard the Millstone mother lived through her share of struggles raising a child who is "dually diagnosed" with a developmental disability and a mental illness, and the violent attacks that often come with it. At 18, her son, Michael, was committed to a state psychiatric hospital against her wishes after hospital emergency room doctors turned him away because they were unable to handle his aggressive behavior.
Icovino was co-chair of a task force of parents and professionals that in 2008 produced a report called "a landmark effort" by state Human Services commissioner Jennifer Velez, who convened the task force. Her department vowed to make the report a blueprint to beef up sorely needed services.
But two years later, some task force members say little has changed

Technology Helps Students with Autism Spread Joy

WHARTON, N.J. — With an assistant supporting his hand, David Sierchio typed a special holiday greeting to cancer patients at St. Clare's Hospital in Dover, said Lisa Romaine, the facilitated communication trainer at David's school.
David, an 11-year-old student with autism, attends Celebrate the Children, a school on South Main Street in the borough for students with alternative learning styles and developmental and learning disabilities.

Shopping for Children with Special Needs

KANSAS CITY, Mo. -- He’s 8. What are they up to at that age? Is this too simple or could it be too complex? Or might he already have it?
Shopping for Christmas can be downright stressful, brain-wracking, frustrating.
Toss into the mix that the child in question has special needs and the anxiety can notch up even more
"Shopping for a child with a disability is tough, even for a parent," said Jill Bamber, a former special education teacher whose 2-year-old son has cerebral palsy and low vision. He’s a student at Kansas City’s Children Center for the Visually Impaired.

Friday, December 17, 2010

Traveling with Autism: Travel Opportunities for Young Adults with Disabilities

Part two of Laura Shumaker's series from her San Francisco Chronicle blog.

SAN FRANCISCO -- If you ask a college senior what they plan to do when they graduate, 9 out of 10 will tell you that they plan on traveling through Europe with a backpack and a Eurail pass before anything else.
Many young adults with a developmental disabilities dream of travel and exploration as well. Matthew has been talking about going to Europe since he was a teenager. He's been saving money from his gardening jobs and has enough for at least a round trip ticket and some spending money. But sending him off with a backpack and a train pass would not be safe. (It would be crazy.)

Study Find Links Between Proximity to Freeways and Autism

LOS ANGELES -- Children born to mothers who live close to freeways have twice the risk of autism, researchers reported Thursday. The study, its authors say, adds to evidence suggesting that certain environmental exposures could play a role in causing the disorder in some children.
"This study isn't saying exposure to air pollution or exposure to traffic causes autism," said Heather Volk, lead author of the paper and a researcher at the Saban Research Institute of Children's Hospital Los Angeles. "But it could be one of the factors that are contributing to its increase."

Music as a Gateway to Success

GEORGETOWN, Del. -- It's the music that takes center stage at most school holiday performances this time of year.
But at Howard T. Ennis, a school for children with developmental disabilities in Georgetown, the music in the "Celebrations" concert Thursday was secondary.
"Our kids learn a lot throughout the process," Principal Kris Perfetti said.

Students Thrive in Inclusionary Pre-K Class

CHEROKEE COUNTY, Ga. - For special needs students, school isn’t always easy. But one Metro Atlanta school system has a program to make it somewhat easier.
Brody Moses, 4, is just like any other child in this pre-k class at the Primrose School in Cherokee County. But according to his mother, that wasn't always the case. She says at around 15 months, she noticed he was different from other kids his age.

Thursday, December 16, 2010

Girls Scout with Special Needs Helping Others Along with Her Troop

MUNCIE,Ind. -- There's something about this time of year that just makes most people a little nicer, a little kinder, a little more inclined to help others.
Since most Girl Scouts couldn't get any nicer, kinder or more helpful year 'round, you can imagine what they're like at Christmastime.

Traveling with Autism

Laura Shumaker does it again, giving her perspective of life with her adult son on the spectrum.

It was the Saturday morning after Christmas, and the two different alarms that I had set the night before for 4:30 a.m. went off as they should, starting the long day ahead on a jittery note.
I would be flying Matthew, who has autism, back from our home near San Francisco to his special school in rural Pennsylvania, about an hour west of the city.
Matthew is high functioning but socially awkward, and since it wasn't wise for him to travel alone, my husband and I took turns flying him to and from school.
I was on edge not only because it had been an exhausting visit with way too much family togetherness, but because Matthew did not like to fly with me.

Massachusetts Agencies Brace for Cuts

BOSTON -- Having been hit hard in recent years, as budget cuts have taken a steady toll and demands for their services have spiked, the state’s social service providers now worry that the worst is yet to come.
The Patrick administration announced this week that it intends to cut as much as $1.5 billion from next year’s budget, potentially eviscerating social services statewide. The cuts have loomed for months as political leaders and economists warned of a shortfall for the next fiscal year, which begins July 1.
With Patrick and state lawmakers saying they need to make between $1 billion to $2 billion in reductions and with federal stimulus money exhausted, the reality of an even worse year is sinking in. Providers are pleading for the governor to spare them.
"I think everyone in the human services field is incredibly nervous," said Gary Blumenthal, president of the Association of Developmental Disabilities Providers in Waltham, which represents about 25,000 residents who receive state assistance.

Tuesday, December 14, 2010

At 8, a Black Belt in Taekwondo

Just an amazing story from the Las Vegas Sun.

When 8-year-old Sonya Dilks, a student of taekwondo, stepped onto the mat on a recent afternoon, she was instantly at ease. She high-fived one classmate and took a gentle jab at another.
But the girl on the mat barely seemed to resemble the girl who just moments before had been in her instructor’s office, with her parents, as they offered words of encouragement for an upcoming competition. The Sonya who stood in the office clutched her favorite stuffed animal, uttered no more than a dozen words and frequently blushed.
Sonya, who on Sunday earned her black belt, is autistic

Students Left Out and Lagging in Hawaii

HONOLULU -- Special-needs students in the islands, many of whom have mild learning disabilities or behavioral issues, perform abysmally on state tests overall and are well behind their peers on the mainland. Most spend much or all of their school day outside of general-education classrooms at a far higher rate than the national average.

Monday, December 13, 2010

26-Year Games Tradition Eliminated

Interesting editorial by Angela Melody of Able Newspaper.

We all know that these are tough economic times and can understand that we must tighten our belts and make do with less. What we cannot and should not accept is how our "disabled" governor can cut an important program for disabled children.
When Gov. David Paterson saw fit to eliminate the Empire State Games from the state budget, he, in the process, cut a small subsidiary program – the Games for the Physically Challenged that brought joy to children who are hearing impaired, deaf, spinal cord injured, amputees, those who have cerebral palsy, muscular dystrophy, dwarfism, arthritis and yes, even blindness, like our governor.

Follow-Up Lacking in Coveted Benefit

HOLYOKE, Mass. — Her toddler was adorable and rambunctious, but his vocabulary was limited to "Mommy" and "that," while other children his age knew dozens of words. When little Alfonso tried a full sentence it came out in a swirl of sounds, often followed by a major league tantrum when he realized he was not understood. And so his mother, Roxanne Roman, was not surprised when the 18-month-old was diagnosed by a specialist with speech delay.
It came as a shock, however, when she learned from relatives that Alfonso's problem might qualify him for thousands of dollars in yearly disability payments through the federal Supplemental Security Income program. For Roman, pregnant with her second child at age 17 and living at her mother's, the extra income was attractive. She wanted to rent her own place.
Within three months, the boy's application was approved. Alfonso receives $700 in monthly cash benefits, plus free government-paid medical coverage. Roman said her relatives told her she can pretty much count on the disability checks for Alfonso, now 5, to keep arriving in the mailbox for the rest of his childhood.
Alfonso is part of the wave of very young children swelling the ranks of this $10 billion disability program — once primarily for those with severe physical disabilities but now dominated by children with behavioral, learning, and mental disorders. Children under 5 are the fastest-growing age group qualifying for SSI benefits, representing four of every 10 new cases, according to data obtained from the Social Security Administration, which runs the program.

Georgia's Special Ed Programs Questioned

ATLANTA -- Georgia's Department of Education is pouring millions into a program for the most emotionally disturbed students, but there is little evidence the special attention is helping, according to a state audit.
The state spent $64 million last year on the Georgia Network for Educational and Therapeutic Support, a special education program that serves students age 3-21 who have severe emotional or behavioral problems. Across the state, the program's 24 branches offer instruction in special classrooms at select schools or at off-site locations.

Study Pinpoints One Cause of Autism

LOS ANGELES - Parents of an autistic child face the grim fact that there is no known cause or treatment for the condition. Autistic children generally go into social withdrawal, disconnection, and repetitive behaviors. However - there are new causes for hope. In a study published in The Journal of the American Medical Association by researchers from the University of California, "Mitochondrial Dysfunction in Autism" discovered a profound and serious biological underpinning of autism -- an acquired loss of the ability to produce energy in the cells, damage to mitochondria and an increase in oxidative stress.
In short, the same chemical reaction that causes cars to rust, apples to turn brown, fat to become rancid, and skin to wrinkle factor into autism.

Autism on the Rise in Hawaii

HONOLULU -- Through the last decade, the number of public school students with autism has doubled to more than 1,200 even as the total number of special-needs students has dropped.
And some parents say that growth is outpacing increases in services.
Those frustrations can be seen in due-process claims parents file when they disagree with the services offered for their child.

Dispelling Perceptions of People with Disabilities

FLAGSTAFF, Ariz. - Cerebral palsy affects the brain, but not the mind.
Because of this neurological condition, Matthew Wangeman needs help with essentially all physical functions. Some simply will never happen, such as speech. What he is quite capable of, though, is his work to advance understanding of the disabled person's experience.
As an instructor at Northern Arizona University, that's what he does

Friday, December 10, 2010

Young People with Disabilities in Nursing Homes is Rising

The number of young adults moving into nursing homes is on the rise and advocates say the reason could be a lack of resources available for people to stay in the community.
Individuals ages 31 to 64 account for 14 percent of nursing home residents today, federal data indicates. Ten years ago, this group made up just 10 percent.
While it’s uncertain precisely why this uptick is occurring, the trend is likely the result of limited resources to help people with developmental disabilities, mental health needs and other concerns stay in their homes. Even as funds for home-based care have increased in many states, the need for assistance is rising faster, experts say.

Thursday, December 9, 2010

A Different Perspective of Princeton University

A search for "Princeton University" on returns more than 20,000 books. But only one is written by a 6-year-old.
Zach Malott's latest book, written with help from his father, Michael Malott, was released Saturday. "Let's Explore Princeton," published in November through the self-publication company CreateSpace, shares the experience of a Princeton visit from a child's point of view.
The book consists of photographs and descriptions of points of interest in the Princeton area. It is the latest in the Malotts' "Let's Explore" series, which began with a Boston title and has included Hollywood, Atlantic City and Central Park. Zach has been diagnosed with development disabilities, ranging from autism to the broader category of special needs, Michael said.

Cafe Puts People with Disabilities to Work

INWOOD, N.Y. — When the owners of Indian Road Café opened their eatery in 2008, the owners decided to hire people who have disabilities whenever possible.
As a result of that decision, the café was named the 2010 small business recipient of the "Works For Me" award from the New York State Office for People with Development Disabilities. They received the award for their "supportive attitude when it comes to employing people with developmental disabilities." They say they do it because it's just the right thing to do.

Wednesday, December 8, 2010

Medicare Waiver Cuts Loom

BLOOMINGTON, Ind. -- If you think you're going to hike with Ron Habney, you'd better be prepared. The 6-foot-tall, 130-pound, 25-year-old treks an average four to six miles a day on some of the most challenging trails in Southern Indiana's Upland regions. Not everyday, to his chagrin, but multiple times a week. Last summer, on one 96-degree day, Ron hiked 9.4 miles through the Charles Deam Wilderness Area in two hours and 20 minutes.
So says John Willman, who knows. He's been Ron's hiking companion and caregiver for almost eight years now. "He's truly an athlete," John says of Ron.
Ron has autism, and John, who is not Ron's parent, is preoccupied with his fate. Ron's progress has paralleled the development of routines that suit his particular needs, Willman says. "For people with autism, that routine is comfort to them."
"The Medicare Waiver cuts, at least as thus far interpreted for Ron, will most likely mean an end to the activities that keep him happy . . ."

Jobs Program Boosts Independence

CARLSBAD, Calif. — Alex Cohen, Allison Isaia and Lori Heien are ideal employees. They're punctual, and they love their jobs.
The three are adults with developmental disabilities, who work at the Pizza Port in Carlsbad, where they fold pizza boxes, wipe down tables, fill cheese shakers and just about anything else they are asked to do.

Tuesday, December 7, 2010

Artist with Down Syndrome Donates Work to Help Needy Neighbors

DARTMOUTH — Three of David Danis' favorite activities are watching television, painting and helping those in need.
One TV program he watched a while ago helped pull it all together. David, a 43-year-old with Down syndrome, watched something about a struggling family whose children were getting sick from lack of food.
"The baby girl wasn't feeling well," David recalled with a frown on his normally smiling face. "She was sick."
That gave him the idea to do whatever he could to help people in need. David, a professional painter, told his mother he wanted to donate some of his work to help the struggling neighbors in his area.

Report Prompts Revamping of Austin Special Eduation Program

AUSTIN, Texas -- The Austin school district is revamping parts of its special education program after a report, commissioned by Superintendent Meria Carstarphen, found that some students appear to be overidentified as having certain special needs, the special education program is undervalued, and students are sometimes ineffectively served.
The report, conducted by the Council of the Great City Schools , addresses an issue that has kept the district from meeting federal school improvement standards for the past two years.
Despite a decrease in the overall percentage of students enrolled in special education, too many students in the district are still taking modified and less rigorous standardized tests meant for special education students.

Teacher's Devotion to Child Captures Oprah's Attention

TAMPA, Fla. - Jeana Rago Blair saw Oprah Winfrey's request online for people who had made a difference and knew she had the perfect nominee.
She frequently writes in to recommend her son's special-needs aide, Diane Sangelo, for local or national awards
. This time, her submission caught the attention of "The Oprah Winfrey Show," which invited her and Sangelo to come to a taping of the program last month.

For Parents of Children with Special Needs, an Opportunity for a Night Out

VIENNA, Va. -- You can hear the tired in Jan Butters's voice.
Until several weeks ago, she'd never spent a night away from her son, who has cerebral palsy and other disabilities.
If he wants a toy, she has to put it in his hand. If he wants to watch a movie (he loves "Mary Poppins" and watches it relentlessly), she has to set it up for him. She feeds him, diapers him and exercises his limbs and shifts his teenage body numerous times each day.
This has been her life for 15 years.
"Basically, you're doing everything for him," said Butters, 50, who can't just call a sitter and catch a movie with her husband.
That kind of a date night would run about $600 for the couple, given the specialized care that their son, Rolfie, needs.

Monday, December 6, 2010

Cheer Texas, a Special Needs Cheering Squad

AMARILLO, Texas -- Ten year-old Kenzie Lee has Down syndrome. She’s one of 19 children, ages 5 to 21, on a special needs cheer squad.
"There are all walks of life, you got autism, downs, kids that are struggling but they don't struggle when they get out there with the team and do real good together," said Kenzie’s father, Tommy Lee.

Scientists Finding Genes Related to Autism

NEW YORK -- Scientists combing the human genome in recent years for autism-related DNA have uncovered dozens of genes related to the disorder and note that countless more genes have yet to be found.
New gene discoveries announced this year - including one just last week - are helping to shape a narrative that autism spectrum disorders are largely genetic conditions.
"A consensus is emerging that many of the individual genes associated with autism underlie a number of other brain disorders," said Dr. Joseph Buxbaum, director of the Seaver Autism Center at Mount Sinai School of Medicine in Manhattan, which is participating in the Autism Genome Project.

A Visit with 'Sensitive Santa' Draws Crowd

TAMPA — With a serious look, Jason Montefusco walked toward Santa, keeping a cautious eye on the man with the white beard.
Slowly, the 5-year-old climbed up into the seat, slid closer to Santa and reached out to touch the white pouf atop his red hat.
His 3-year-old brother took a seat next to him. A photographer snapped their picture.
Jason wasn't smiling. But his mother beamed enough for the both of them as she celebrated a holiday milestone with scores of other parents of autistic kids.

State Moves People with Disabilities into Community

MONSON, Mass. - Lawrence T. Davis became mentally disabled when he contracted whooping cough as a child. Now 71, he uses a feeding tube for nutrition and a wheelchair or a walker to get around. He can't read. He uses an electric razor and dresses himself, but is prompted to wash his face, his sister said.
Davis became a resident of the Monson Development Center in 1951 and lived there until September of this year. That month, as part of a plan to gradually close the center and three similar campuses for the mentally disabled, he moved into a state-operated group home in Woburn, along with seven other longtime residents.

Friday, December 3, 2010

Hanukkah, Autism and One Temple's Run at a Miracle

Just a wonderful story from The New York Times. Sad beginning, but a happy ending.

On these days of Hanukkah, as Jews light the menorah’s candles, they recite a blessing for miracles of the past, for enemies vanquished and for lamp oil sustained. What might constitute a Hanukkah miracle today depends, perhaps, on what one needs and what one asks. It could even happen on the Upper West Side of Manhattan.
Early in the summer six or seven years ago, Nancy J. Crown set about looking for a part-time job for her teenage daughter, Sadie. By now, as both a mother and a psychologist, Ms. Crown was all too familiar with the struggle of finding any person, any program, any place suitable for a child with autism.
Doctor, dentist, swimming lessons, vocational therapy, tutoring, ballet, even a pair of shoes without buckles or laces – every part of Sadie’s life, it sometimes seemed, plunged Ms. Crown into a lonely quest. At the lowest moments, she told herself, “I am not allowed to die,” because then who would take care of Sadie?

Working His Way Into Shape for a Job

ST. CHARLES, Mo. -- Jose Espinosa has Down syndrome; few people have expected much from him. But that hasn't mattered, he said, as long as he expects a lot from himself.
Today, he works a job at Club Fitness in St. Charles, where as a porter 12 hours a week, he keeps the place spotless.
"I just worked hard," he said, explaining how he got the permanent job. "I'm proud of myself."

Autism Insurance Coverage Dies in Michigan Senate

LANSING, Mich. — The Michigan Legislature won't pass proposals requiring insurance coverage for certain autism treatments in the 2009-10 session.
Republican leaders in the Senate would not allow a vote on the proposal before finishing its voting for the year today. The Democratic-run House had approved the measure last year.

Home Care Might Be Cheaper, But States Still Fear It

Interesting series from NPR. This is just one piece of it.

For states, it's the big unanswered question about expanding opportunities for elderly and disabled people to get their long-term care at home: How much is all this going to cost?
In 1999, the U.S. Supreme Court ruling in Olmstead v. L.C. said that the unnecessary institutionalization of people with disabilities is a form of discrimination. State Medicaid programs are required to provide alternatives so that the elderly and disabled can choose to get their care at home, instead of in state institutions or nursing homes. But the Supreme Court said there were limits. A doctor, representing the state, has to determine that the person is capable of living at home. The person has to want to get that care at home. And a state when considering its responsibility to move people out of institutions can consider its own budgetary constraints.
That makes the cost issue important. But there's disagreement over whether moving people out of institutions and nursing homes and into home-based care will save or cost money.

Thursday, December 2, 2010

Disability Advocates Lobby for Alcohol Tax

BALTIMORE -- Michelle Rikon of Elkridge has a 12 year old son with multiple disabilities who sometimes violently lashes out at her and his 8 year old brother, traumatizing the youngster and monopolizing his mother's time to the point that the younger child won't eat and may need a colostomy. He's fed through a tube, she said, while her older boy has been hospitalized seven times for his outbursts, and nothing seems to help.
If that weren't bad enough, she said, "We have received no services" from the state's Developmental Disabilities Administration. Other speakers said the overburdened agency is busily dropping thousands of needy families from its 19,000-name waiting list, often without any notification — an allegation that the state disputes.
Rikon, a 38-year old nurse, made her tearful, emotional remarks spontaneously at a legislative breakfast held Wednesday morning by the ARC of Howard County and the Howard County Autism Society. Those groups are pushing Howard's state legislators to support an alcohol tax increase that they believe could help relieve their problems with more than $200 million in dedicated new revenue.

New Version of Old Drug Could Treat Autism

One night in 2006, Kathy Roberts rushed her autistic daughter, Jenny, to the hospital. Nothing had been able to stop the young woman, then in her mid-20s, from vomiting. Jenny had recently suffered several major seizures and her entire gastrointestinal system was going haywire.
To try to calm Jenny's GI tract, doctors at Massachusetts General Hospital prescribed baclofen, an antispasmodic drug that is also being studied as a potential treatment for alcoholism and other addictions. The drug relieved Jenny's vomiting, but it did something else too — a completely unexpected and welcome side effect.
"Within 24 hours, I saw a change," says Roberts. "Right away, I saw that it was globally calming. I've always described a state that she would get into where it seemed like she wasn't comfortable in her own skin, and was trying to crawl out. I saw that calmed down."

Study Finds Brain Scans Can Detect Autism

U.S. researchers are closing in on an accurate test for autism, a finding that could lead to earlier diagnosis and treatment.
The test, which uses conventional magnetic resonance imaging or MRI machines, detected 94 percent of individuals with a high-functioning form of autism, they reported on Thursday.

Study Finds Southeast-Asian-Americans Face Service Barriers

SACRAMENTO, Calif. — A new community-based study by UC Davis researchers has found that children with developmental disabilities in Southeast-Asian-American families face significant obstacles to receiving intervention services. Barriers include lack of accurate information, language difficulties, lack of trust and limited outreach.
Despite these findings, study participants said that with education, outreach and culturally responsive support, families would likely accept services, which led researchers to continue to work with the community groups to develop educational opportunities to improve access and services.

Wednesday, December 1, 2010

Legos Spur Creative Thinking in Children with Autism, Study Shows

Legos may be an important learning tool for children with autism. University of Rochester Medical Center researchers discovered that the use of legos may be vital in helping children with autism tap into their ability to think creatively.
Children with autism often experience difficulty in formulating creative ideas, often hampering their ability to be successful. Frustration and uncomfortable feelings often accompany the inability to be creative. With this study, researchers took a step forward as all six children were effectively taught to play with legos more creatively.

Data Released from National Autism Research

Once again, relying on a press release (not too often, unless it's extremely strong, which this one is).

Autism Spectrum Disorder (ASD) researchers now can use data from over 10,000 participants enrolled in ASD studies. The National Database for Autism Research (NDAR), created by the National Institutes of Health, recently made the data available. Researchers can now use the NDAR portal to perform queries that simultaneously yield results from multiple datasets. The portal was designed to provide tools to define and standardize data collected by different laboratories under different protocols. It was also built to ensure a collaborative approach and open data access to the whole ASD research community.
Researchers supported through the NIH Autism Centers of Excellence were the first to contribute data to NDAR in 2008. Since then, NDAR staff has been working to define, standardize and transfer data into NDAR from earlier NIH programs, such as the Collaborative Programs of Excellence in Autism (CPEA) and Studies to Advance Autism Research and Treatment (STAART).