Thursday, June 30, 2011

Bronx Teen with Autism Graduates from High School and Is College Bound

BRONX, N.Y. -- Naresh Cintron, an 18-year-old from Baychester, will graduate Friday with a Regents diploma. What sets him apart from thousands of other high school grads is that he has Autism Spectrum Disorder.
He is the first student to graduate with the hard-earned diploma from the Association for Metroarea Autistic Children (AMAC), where he attended the AMAC Academy, which focuses on moving the students on to junior college and college.

'Just Treat Me Like Anybody Else'

McMINNVILLE, Ore. -- Scott Wood is many things: valedictorian of the Class of 2011 at the Media Arts and Communications Academy, where he also was elected prom king; a budding scholar who is leaning toward studying either accounting or astrophysics when he starts college on a scholarship this fall; a young entrepreneur who spends Saturdays running a booth at the McMinnville Public Market.

He also is autistic. He's willing to talk about the neurodevelopmental disorder that makes communication and interpersonal interaction challenging. In fact, he started his market booth so he could educate people about autism.

However, he doesn't let autism define him, and he doesn't want to be dealt with differently because of it.

"Just treat me like anybody else," he said.

"Don't try to treat me as someone who needs help, or who's different," he said. "Just treat me like anybody else."

Summer Fun for Special Needs Families

Some tips and ideas to help parents of children with special needs keep their kids active this summer!

WASHINGTON, D.C. -- The importance of improving fitness skills cannot be underestimated. Many special needs children with low levels of interest in physical activity are often found to have decreased self-confidence. The American Heart Association has shown that physically active children show improvements in a wide variety of measures of psychological well-being—including self-esteem.

A vicious cycle can easily be established as both physical activity and self-confidence decline. A special needs child may feel inadequate when he thinks that he is unable to keep up with his peers and may avoid play situations. The child may find ways to compensate for lower skill level by staying indoors when possible, creating fictitious injuries, offering to be the game’s referee, or walking around the perimeter of the activity.

How can parents encourage their children to be physically fit? Simply put, make physical activities and games fun! The key to successful participation is creativity and positive reinforcement as well as scheduling a regular time during the week as family playtime.

Reforms to Safeguard Individuals with Developmental Disabilities

CHICAGO -- Illinois Gov. Pat Quinn on Tuesday signed into law sweeping reforms designed to safeguard thousands of children and adults with developmental disabilities who live in nursing facilities.

The new laws, sparked by a Tribune investigation, call for stiffer fines for poor care, fewer roadblocks to closing facilities, stricter rules on the use of psychotropic medications and increased reporting requirements in cases of death.

State officials and some advocates described the legislation, passed by the General Assembly in May, as the most significant effort in a generation to help the developmentally disabled in Illinois nursing homes.

In October, a Tribune series documented a 10-year pattern of death and neglect at a North Side nursing facility now called Alden Village North. The newspaper found that 13 children and young adults had died in cases that resulted in state citations for neglect or failure to investigate.

Inflatable Playground Accommodates Autistic Kids Nationwide

CHICAGO -- The nation's largest indoor inflatable playground, Pump It Up recently started making accommodations for children with Autism Spectrum Disorders.

More than 150 Pump It Up playgrounds across the country are giving children with autism sensory jump time. It's an opportunity for them to be in a safe environment while having a lot of fun.

At Chicago's Lincoln Park Pump It Up, 5-year-old Ivan is making his way around the inflatable playground. Mom Martha Fregoso said her son was diagnosed with autism just after his second birthday.

"A couple of things that we've noticed was just his development, he wasn't speaking very well for his age. He had a lot of sensory issues so we had a lot of issues with adjusting with the environment sounds," Fregoso said.

This is challenging for young kids like Ivan, to do simple things like play with peers.

"He's ultra sensitive to sounds, so if the radio is too loud, he can't tolerate it. He says it hurts. Fire alarms, fire trucks, any sudden, spontaneous sounds that he's not anticipating really affect him," Fregoso said.

The Sensory Jump Time program has games and activities catered to the specific needs of children with autism. It's a partnership between Pump It Up and Autism Speaks.

Abusive Doctor Loses License

A story from the BBC--a doctor who was caught abusing an autistic resident lost his right to practice. A disgusting situation, deserving of serious consequences.

NORFOLK, England -- A doctor who kicked a patient suffering from autism at a residential home in Cromer, Norfolk, has been struck off by the General Medical Council (GMC).

The GMC panel found Dr Robert Bartosik, 47, had kicked the male resident, in his 30s, in the rear during a row over a pair of rubber gloves in March 2007.

The GMC fitness to practise panel ruled his actions were "unacceptable".

Dr Bartosik, who was a support worker at the time, denied the allegation and claimed a witness was lying.

The GMC panel also found him guilty of deficient professional performance at various NHS trusts throughout the UK.

The panel agreed with a number of his employers that Dr Bartosik, who comes from Poland, had poor clinical skills and poor communication and language abilities.

The doctor was said to have ignored advice from colleagues when he tried to take the gloves from the kitchen of a bungalow at the Treehaven home for people with autism spectrum disorders.

The resident, who has Asperger's syndrome, began throwing items of cutlery at Dr Bartosik, who retaliated with the kick.

The panel noted: "As a professional person Dr Bartosik should have dealt with the situation in a different way and not have retaliated by kicking the patient.

"The panel is of the view that his actions were out with the boundaries of acceptability and that the public and profession would deem it to be unacceptable."

Daycare Center Settles With Autistic Child’s Family

OLD SAYBROOK, Conn. -- The Justice Department has reached a settlement agreement with Beach Babies Learning Center LLC, in Old Saybrook, to resolve allegations that the center ended the enrollment of a 2-year-old child because the child has autism.

The center will pay $7,341 to the child’s parents and will also implement policies so children with disabilities have equal opportunities to participate in from the center’s programs and it will post a nondiscrimination policy at its facility and its website, according to a news release from the Department of Justice.

When this happened, the child was 2 years old, officials said.

“Ensuring that children with disabilities, and their families, have equal access to early education and child care centers goes to the heart of the ADA’s promises and protections,” Thomas E. Perez, Assistant Attorney General for the Civil Rights Division, said. “Beach Babies Learning Center cooperated with the department to address this matter through this agreement, and we hope that this agreement serves as a reminder to other education and child care providers about their responsibilities under the ADA.”

Developmental Center Review is a Necessity

A writer's opinion on the New Jersey task force to review developmental centers and the recent closing of one facility.

VINELAND, N.J. -- State Sen. Jeff Van Drew's bill to create a task force to conduct a thorough review of the state's seven developmental centers and develop a plan for their future is the only way to go before any decisions on closures are made.

Unfortunately, this apparently wasn't done before the proposed closure of the Vineland Developmental Center was included in the governor's budget.

The Christie administration and Department of Human Services should have conducted such a thorough review and considered many factors before making any decision. Then, they would have known the:

• Economic impact on the community of closing a particular center.

• Ability of the surrounding community to provide the necessary services and support to those with developmental disabilities.

• Projected repair and maintenance costs.

• Number of patients within the centers who require 24/7 supervision.

• Number of patients and their families who expressed a desire to remain in a developmental center.

Even after a plan is developed, one or more of the developmental centers statewide could be closed. But then residents and the state will have all the facts to make an informed decision that's the best option to ensure taxpayers save money, economic hardships are shared fairly by North and South Jersey, and all center clients and their families continue to be served well.

A Mother's Message

An interesting blog post from the Huffington Post--a mother's message to the President about the rise in autism.

Dear Mr. President:

I received a form letter from Vice President Joe Biden recently -- one of those mass emails one gets but rarely reads. I read that if I were to make a donation of $5, my name will be thrown into a hat for a chance to have dinner with you. Alone.

I imagined what I would say to you, Mr. President, if I had the opportunity to have dinner with you. And of course I knew what the answer was without hesitation. I would speak with you about the rising number of children diagnosed with autism. In 20years there has been a 600-percent increase in diagnosed cases of autism. I would direct you to the countless news stories regarding the rampant abuse of those same children and adults living in group homes and institutions. I would ask you to help set up communities where individuals with autism were treated with respect and would have more control over how they lived, allowing them to pursue their interests and encouraging them to follow their dreams.

Mr. President, I would tell you about our trips to Central America with our daughter Emma for stem cell treatments. I would encourage you to put more funding into stem cell research, umbilical cord stem cells, using the patient's own stem cells and any other form of stem cells that might prove viable in restoring the lives of hundreds of thousands, even millions.

Tenn. Budget Cuts Impact Families

NASHVILLE, Tenn. - Major state budget cuts will soon impact hundreds of Tennessee families who care for disabled loved ones.

Some believe that the cuts are so severe that it will greatly impact the quality of care for patients who depend on around the clock care.

The Department of Intellectual and Developmental Disabilities is cutting $47 million from its budget. These cuts will impact around 700 families.

Nursing services will be limited to 12 hours a day, and 215 hours a month is the new limit for personal assistance services.

The Tennessee Disability Coalition believes when you cut quality of care that will send more people to the hospital, or to institutionalized care which ends up costing the state more money.

On any one day, five health care professionals stop by Linda Gill's home. A brain injury as a toddler has caused lasting brain damage into her senior years.

"Initially we are going to lose one of the caregivers, for each shift," said caretaker Claudette Reed.

The 24-7 care that surrounds Linda is about to unravel because of state budget cuts; the hours that a personal assistant spends is about to change.

"Eventually we are going to be cut to 50 hours, which essentially means there will be no one to care for her, except for family, and there's not any family left," Reed said.

Campers with Developmental Disabilities Sing with Carrie Underwood

NASHVILLE, Tenn. -- Carrie Underwood stopped by Starstruck Studios Wednesday morning to talk with the ACM Lifting Lives Music Campers, but she wound up doing more singing than talking.

And so, she sang, with accompaniment from the enthusiastic campers, all in town for a week-long residential camp that provides musical enrichment for the participants and allows Vanderbilt Kennedy Center researchers to study developmental disabilities. They all sang Underwood hits “Jesus, Take the Wheel” and “Undo It,” as well as Bill Withers’ “Lean on Me.”

“I sing because I love to sing, and that’s what they love to do, too,” Underwood said. “They just made my day, my week and my month.”

New Blood Test for Autism in Development

Information on a developing new blood test to determine children's places on the autism spectrum.

On June 9, we commented on a scientific study that proved that autism in children can be caused by a random genetic mutation that could occur at any one of hundreds of different sites in the human genome. As I told you in that story, I believe the science because of the significant role that genetics often play in our everyday lives.

I have also previously written about my strong support for early intervention – essentially, how important it is that early diagnosis be made and how early intervention can make a difference in altering the maturity in some of the children with autism spectrum disorders.

Despite the countless studies that have been done on autism and it’s dramatically growing numbers, there are still many people who don’t believe in the reality of the autism spectrum. Nevertheless, for those parents like me that are seeking answers, there is a need to always keep an eye out for new studies and solutions.

And that brings me to this latest report, which is the product of ongoing research being conducted in Rhode Island at Bradley Hospital. Scientists are doing research based on the idea that autism has genetic origins. Their ultimate goal is to develop a blood test that could diagnose both autism and what the disorder would mean for the specific child it affects in terms of symptoms and treatment.

R.I. Budget Approved with Cuts to Developmental Disability Funding

PROVIDENCE, R.I. –– A $7.7-billion state budget for the year that begins Friday cleared the General Assembly on a hectic day at the State House, and now heads to Governor Chafee for his signature.

The tax-and-spending plan, approved on a 30-to-7 vote of the state Senate on Wednesday, was part of a packed agenda for lawmakers, who are pushing to bring the 2011 legislative session to a close by the end of the week, in time for the July 4 holiday.

Representatives and senators faced potential votes on more than 100 bills, including a number of controversial proposals that have been hotly debated all session.

The Senate passed legislation, already passed by the House, creating civil unions for gay couples in Rhode Island, and sent that to the governor. A key House committee took up legislation, already approved by the Senate, that would determine who controls the disposition of more than 40 prime acres of Providence real estate opened by the relocation of Route 195.

Meanwhile, opponents of binding arbitration flocked to the State House to pack hearing rooms in an effort to dissuade lawmakers from passing bills that, they claimed, will bring Rhode Island’s already financially struggling cities and towns to their knees.

“It makes no sense during the final 48 hours of this legislative session to rush this through,” complained Daniel L. Beardsley, executive director of the Rhode Island League of Cities and Towns.

Senate budget approval followed more than one hour of debate in which a number of proposals to significantly alter the spending plan were resoundingly rejected leaving the House-approved plan unchanged.

Senate Republicans, by far the minority in the chamber, launched failed bids to repeal the $500 corporate-minimum tax and to introduce changes to state worker pensions.

Sen. John J. Tassoni, Jr., D-Smithfield, a former top-ranking labor union official, wanted to strike down language eliminating new longevity pay increases for state workers, a controversial part of the budget that unions say violates their collective bargaining rights.

And Sen. Harold M. Metts, D-Providence, failed in his attempt to add funding to human-service programs dealing with housing, subsidized health insurance for low-income families, and programs for the developmentally disabled.

“I agonized over the cuts to the most vulnerable in our society,” said Metts, whose district covers South Providence. “Why are we helping AIG and Bank of America, but we can’t help the poor? I can’t understand it.”

Editorial: Virginia Needs Reform Now

Virginia ranks in the gutter among states for Medicaid services provided to individuals with intellectual and developmental disabilities, formerly characterized as mental retardation. They include those with a range of disabilities, including Down syndrome, cerebral palsy and autism. Medicaid, a federal-state partnership, provides funding for people who are eligible for long-term care in institutions; Medicaid waivers allow payment for community-based services, such as group homes, supported employment and day activities.
The shortfall in waivers has to change — and sooner, rather than later. The U.S. Department of Justice made that clear in February when it lambasted the state for its policy of institutionalizing the intellectually disabled instead of providing community care.

California Budget Slashes Services

SACRAMENTO, Calif. -- Poor people will receive less medical care and welfare, disabled people will see fewer services, state parks will close and public university students will pay more in California under the budget that takes effect Friday.

Wednesday, June 29, 2011

Students Feel Left Out After Graduation

SPRING VALLEY, N.Y. -— Like any parent, Maureen Osei was excited to attend her daughter Lauren's high school graduation.
After six years of hard work and overcoming a serious disability, Lauren, 21, who has autism, was set to receive her certificate of completion from Spring Valley High School, where she had been enrolled in a special-needs program.
But the proud parent's excitement gave way to confusion and anger when she arrived at Sunday's commencement ceremony and discovered Lauren's name missing from the class of 2011 seating arrangements and from the commencement program listing each of the 250 graduates.
Also left off the list: Anthony Mundy, a 21-year-old with Down syndrome and the only other student from Lauren's special-needs class who was to graduate Sunday.

Connecticut Daycare Center Settles with Family Over Child with Autism

OLD SAYBROOK, Conn. -- The Justice Department has reached a settlement agreement with Beach Babies Learning Center LLC, in Old Saybrook, to resolve allegations that the center ended the enrollment of a 2-year-old child because the child has autism.
The center will pay $7,341 to the child’s parents and will also implement policies so children with disabilities have equal opportunities to participate in from the center’s programs and it will post a nondiscrimination policy at its facility and its website, according to a news release from the Department of Justice.

Tuesday, June 28, 2011

Teaching the Fundamentals of Golf

SKILLMAN, N.J. -- Jin-ho Chang struts toward the driving range, his bright blue Callaway bag bouncing across his back, seemingly like any other golfer enjoying a sunny afternoon.
But Chang, a 14-year-old boy with Down syndrome, is unmistakably engaged in the details and dynamics of his golfing experience. On his journey from the putting green, Chang taps strangers on the shoulder, offering a high five and a gestural explanation of where his golf balls are stored (in the pocket next to his shiny white golf glove) and which clubs he wants to use first (his 9-iron, then his 5-iron). He communicates through simple pointing, and an awfully big smile.
Chang joined with other children from the Montgomery Special Olympics in Somerset County for five Monday sessions in the early summer to learn golf. Their instructors at the Cherry Valley Country Club are members of the Montgomery High golf team.

Tracy Morgan Drops the 'R' Word

Tracy Morgan may want to invest in a bus, because his apology tour may not be over just yet.
The Arc, a nonprofit advocacy group serving people with intellectual and developmental disabilities, is the latest organization demanding an apology from the comedian for remarks he made during his stand-up routine Saturday—his first performance since his infamous antigay rant.
This time Tracy ranted about "retarded kids" and "cripples." Oh boy.

Teacher Layoffs Tied to Special-Education Changes

MOUNT VERNON, N.Y. -- The Board of Education is laying off 19 teachers and five teaching assistants as part of a special-education change.

The layoffs mean that the district will have fewer classrooms staffed by two teachers.
Under the new approach, special-education teachers will only come into the classrooms that have a mix of nondisabled and special-education students for part of the day.

The Board of Education adopted resolutions authorizing the layoffs at a special meeting on Wednesday. The layoffs included three elementary teachers and 16 special-education teachers.
On Monday, schools spokeswoman Desiree Grand said that the district was following a model instituted by the Yonkers school district in the 2009-10 school year.

"Rather than having the special-education teacher with the students throughout the day, they are sharing special education teachers among several classrooms," said Jeff Yonkers, president of the Mount Vernon teachers union.

Families Continue Wait for Medicaid Waivers

One in a series of in-depth looks at the Virginia Medicaid waiver situation. Putting a face to the problem.

NEWPORT NEWS, Va. -- Kelsey Musick is 14 years old, loves Michael Jackson and likes to dance.

But if she's unhappy, she'll take off and hide.

She needs supervision to get dressed and out the door to catch the school bus. In the kitchen, she can make sandwiches and operate the microwave, but that's about it, her father, Kelly Musick, said.

Kelsey, who has Down syndrome, will need help for the rest of her life.

"I don't see her living independently," the Newport News resident said. "I don't see her ever having a checkbook. She needs mentored caring."

And what her parents can't provide, they hope a Medicaid waiver will.

Across the state, 8,327 people with intellectual and developmental disabilities are being served by Medicaid waivers. The waivers allow Medicaid to pay for a wide range of in-home medical services that would not be covered otherwise. As of June 13, 5,790 people were on a waiting list for a waiver. Kelsey is one of them. But she's not one of the 3,216 people on the urgent list.

The state budget, which goes into effect July 1, adds $9.8 million for 275 more waiver slots. But there are about 275 people on the Hampton-Newport News Community Services Board's waiting list alone — and about 100 of them are classified as "urgent." Kelsey is not one of them.

Special Needs Schools Suffer Funding Cut

A piece from the Guardian shows that across the pond, government funding for special needs programs is just as big a problem.

LONDON -- More than 20 schools for children with special needs have suffered a £1m cut in government funding, which will lead to cutbacks in provision, affecting services such as translating books into braille and helping children with disruptive behaviour.

The cut affects private special schools that received money for programmes involving children at state schools.

The schools affected have suffered individual cuts ranging from £45,000 to £145,000. They include the West of England school and college in Exeter, which caters for pupils with visual impairment, and St Vincent's school in Liverpool, a specialist school for children with sensory impairment.

Claire Dorer, chief executive of the National Association of Independent Schools and Non-Maintained Special Schools (NASS), said that in terms of overall education funding, the £1m cut was a "drop in the ocean" for the Department of Education.

The cut follows a government decision to integrate cash for special schools into the mainstream school funding grant.

Business 101 for Students with Special Needs

MAPLEWOOD, N.J. -- Calculating the best-priced cookie dough may be a small challenge for the executives of Diamond Enterprises, but making eye contact while paying the cashier is an enormous one.

Diamond Enterprises is a sandwich, salad and snack business run by students with autism and severe learning disabilities at a New Jersey high school where this year 700 orders, most placed by teachers, were served.

The program at Columbia High School in Maplewood, New Jersey, is among a wave of innovative programs in public schools throughout the nation that go beyond the traditional classroom to develop life skills among special-education students, many of whom were once bused out of their home district to far more costly programs.

Special-ed students can have difficulty with human interaction, so learning manners and acceptable behaviors such as eye contact is less of a social nicety and more of a survival skill.

"The social piece is at least as important as learning to read and do math," said Eugene Porta, a teacher who oversees the nine students running Diamond Enterprises. "We need to help them develop skills to function in the community."

N.J. Task Force to Review Centers

VINELAND, N.J. -- Sen. Jeff Van Drew, D-1, is backing legislation to create a task force charged with fully reviewing the state's seven develop mental centers.
The task force also would develop a plan for the future of developmental centers in this state, which could include plans for facility closures.
"This will ensure that residents and their families are able to decide the best course of care going forward should a closure occur, and that no one region of the state will be unduly harmed," he said.

R.I. Budget Moving Ahead with Severe Cuts

PROVIDENCE, R.I. –– The full Senate will vote on Wednesday to approve a proposed $7.7-billion state budget, following Senate Finance Committee approval on Monday.
The committee considered the House-approved budget for less than an hour before passing the plan unchanged, with only Sen. Frank A. Ciccone III, D-Providence, opposing.
Ciccone and other committee members expressed concern about the impact of some $24 million in cuts to programs and services for persons with developmental disabilities such as autism or Down syndrome. Still others were disappointed at the lack of direct funding for subsidized housing.
"Senator Ciccone and I have been absolutely hammered with e-mails this week," said Sen. James E. Doyle II, D-Pawtucket. "People are making comments that [persons with developmental disabilities] cannot help themselves. They are heart-wrenching emails."

The Night the Lights Went Out

Came across this on Patch by Lynn Hudoba, the mother of a little girl with autism. She writes a blog

DOWNERS GROVE, IL. -- I'm sitting downstairs, with my daughter supposedly sleeping upstairs. I simultaneously hear the thunderous storm outside, that dead-duck sound of everything powering down, and her screaming, "OH NO! MY AAAAANGEL!!!!"
It seems her guardian angel took a powder along with the electricity. The guardian angel, who also happens to double as a night light.
It's really hard to explain to any child, let alone a child with autism, what electricity is and how it makes the angel glow and how, no, I can't fix it by putting in a new light bulb like last time, all while wondering if the house was headed for Oz and whether that angel would have recommended that we get to the basement if she was around to look after our well-being.

Controlling Behavior with Meditation

LEVITTOWN, Pa. -- Brandon Heinz, an eighth grader in the Bristol Township School District, told occupational therapist Charles E. Gallagher that he had been asked to sit still "millions of times."
The problem is that it's not always easy.
For Brandon, 14, and his classmates -- students with autism, attention-deficit disorders, or other special needs - controlling signs of anxiety is often a struggle.
So Gallagher made a suggestion: Breathe

Monday, June 27, 2011

Developmental Disabilities Live Chat

The Daily Press is hosting a web question-and-answer session about developmental disabilitites--we'll keep you posted on what is discussed! Log in and ask some questions!

NEWPORT, Va.- Here's your chance to ask questions about Virginia's intellectual and developmental disabilities system. On Wednesday, June 29, at noon, we'll offer a live Web chat with Hampton-Newport News Community Services Board representatives Beverly Smith, manager of child and adolescent case management; Daphne Cunningham, clinical administrator of ID residential services; and David Spratley, clinical administrator of ID day support services; as well as Julie Palmer, director of children’s services, and Linda Kerns, director of community living, both of The Arc of the Virginia Peninsula. Ask them your questions about early intervention and how to enroll in services. Can't make the chat? Email questions in advance to

Country Music Stars Team-up to Help Developmentally Disabled

NASHVILLE, Tenn. - The 2nd Annual ACM Lifting Lives Music Camp – a week-long residential program open to campers nationwide with developmental disabilities, talented in music – will start start on Monday, June 27, with a number of stars lining up to help.

Superstars volunteering time to participate include Gary Allan, Little Big Town, Darius Rucker, Carrie Underwood and Wynonna, along with hit songwriters Odie Blackmon and Brett James, and renowned producer Mark Bright.

The Camp has a dual purpose of studying Williams syndrome and other developmental disabilities and providing music enrichment through performance and education. ACM Lifting Lives funds the costs of the Camp, enabling the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities to advance its mission of improving the lives of individuals with developmental disabilities and their families through research, training and service.

Campers will participate in a songwriting workshop and recording session, culminating in a live performance at the Grand Ole Opry. At the Opry, campers will reprise their 2011 ACM Awards hit Music from the Heart and share an original song they will write at this year’s camp. Throughout the week, campers will also gain the invaluable experience of visits from top-tier country music veterans. Prior camps have featured artist visits from Kix Brooks, Julianne Hough, Eddie Montgomery, LeAnn Rimes and more.

Many Pediatricians Fail toTest Toddlers for Developmental Delays, Study Finds

Although there's been some improvement in the number of pediatricians checking toddlers for developmental delays, more than half still don't routinely do so, a new study finds.
In 2002, just 23 percent of pediatricians reported always or almost always using one or more standardized developmental screening tools for infants and toddlers up to 35 months of age. By 2009, that number had risen to just under 48 percent, reported the study.
Early detection of developmental issues such as autism or impaired hearing is key to initiating early and effective treatment, experts said.
"There's more and more evidence that starting early intervention can make a big difference in developmental outcomes than if we wait," explained study co-author Dr. Nina Sand-Loud, an assistant professor of pediatrics and a developmental-behavioral pediatrician at Dartmouth-Hitchcock Medical Center and Dartmouth Medical School in Hanover, N.H.

Baseball Team for Children with Developmental Disabilitites Celebrates Season

BRAINTREE, Mass. - Nine years ago, Richie Fennell was playing baseball in Norwood with other children with developmental disabilities and looking for a league closer to his hometown of Weymouth.

So Richie and his mother Laurie, along with other volunteers, created Challenger Baseball in Braintree, which has grown from just a handful of teams and players to more than 120 kids and 10 squads over the past eight years. On Sunday night, all 10 took to Hollingsworth Park to play their final games of the season and take home trophies.

Richie, who has autism, is now 18 years old, a first-year Challenger coach and a high school graduate, planning to attend Cape Cod Community College in the fall with a focus on environmental studies.

"We have come a long way from two teams," he said before the final game on Sunday.

After playing in the league since it began, Richie said he wanted to contribute his knowledge of the game to younger players, and will likely coach at least one more season with the Dodgers.

"They have a blast," he said. "It's good to watch."

Paper Mill Playhouse Earns Award for Sensory-Friendly Performances

A follow up on the article about Paper Mill Playhouse's sensory-friendly performances! Congratulations on all of your hard work!

MILLBURN, N.J. - Paper Mill Playhouse (Mark S. Hoebee- Producing Artistic Director, Todd Schmidt-Managing Director) created a comfortable, welcoming atmosphere for the very first sensory-friendly performance presented at the Millburn theatre on June 11th. Designed for children on the autism spectrum and with other developmental disabilities, great care went into structuring the performance into a fully accessible theater experience. This sensory-friendly performance of Pushcart Players' Stone Soup and Other Stories was supported by a grant from The Merck Company Foundation. In recognition of its success, Paper Mill Playhouse and Pushcart Players received the 2011 "Innovator Award" on June 23rd from the Cultural Access Network of New Jersey, which is sponsored by the New Jersey Theatre Alliance and the New Jersey State Council on the Arts.

"We've received suggestions and encouragement from the over 300 people who attended this first performance, and with their support we hope to grow this effort so that it's not a special event, but a regular occurrence." remarked Lisa Cooney, Director of Education at Paper Mill Playhouse. "

Woman with Down syndrome lives independently, thanks to new style of care

PROVIDENCE, R.I. - Megan Reynolds is chatting with visitors, her foot resting on her knee as she puts on a sneaker, preparing for a trip to the gym.

Amie Cabral, next to her on the couch, gives Reynolds’ elbow a little nudge. “Wrong foot,” she says.

Reynolds, 22, switches feet. She resumes tying her sneaker and answering questions about her relationship with Cabral, 20 –– a Rhode Island College student who is one of her four employees.

“I usually prefer women to men,” Reynolds explains, “because women have better ways to help me put my emotions in check. My anger is an issue. …

“They help me with my daily living skills. They help me by bringing me to the doctors. They remind me to get my medication when I need to take it. They help with transportation to social events with friends.”

Reynolds, who has Down syndrome, participates in a program called self-directed care. With her mother coordinating, she uses the state money that supports her (in her case, about $35,000 a year) to hire her own assistants, rather than having an agency take care of her.

Brain Test to Detect Autism in Toddlers

A new study indicates that autistic children show weaker synchronisation between the language areas on both sides of the brain.
Scientists measured the neural activity of sleeping toddlers, and found that children with the weakest synchronisation exhibited the most severe communication difficulties.
Researchers said the findings could lead to a method of diagnosing autism in one-year-olds.

Plan Would Save N.J. Developmental Center

VINELAND, N.J. — Democrats on the state's budget committee are making a final push to spare two key parts of Cumberland County's economic foundation that are under fire in Gov. Chris Christie's proposed spending plan.
The deadline for the state to pass a budget is Thursday.
In a last-ditch effort, Democrats are proposing their own budget that would save the Vineland Developmental Center from closure and fund the state's Urban Enterprise Zones, Sen. Jeff Van Drew said.

Sunday, June 26, 2011

33 Years Later, Living and Accepting Autism

Amazing what you can come across on the Internet. Here's an article about a New York resident whose son actually received services from YAI years ago and now has relocated with her family to the Philippines. We'll definitely have to reconnect with her. Lirio SobreviƱas Covey is a graduate of St. Theres’'as College, Quezon City and Manila, a New York resident for over 40 years, and currently Professor of Clinical Psychology and Senior Research Scientist at Columbia University in New York. She and several parents of and advocates for persons with autism have started the Association for Adults with Autism, Philippines (AAAP). The association, a non-profit corporation registered with the SEC, will develop and operate "A Special Place," a residential program for adults with autism.

When my firstborn was not quite four months old, his first nanny had delighted me with the comment, "You have a precocious son." And so it was that Billy became a source of family pride with his growing social, physical and mental prowess.
So imagine what a shocking blow it was when several years later, Dr. Isabelle Rapin, a noted neurologist in New York, gently told me that our second son Mikey, then 3, had what she termed "a brain disorder" and would likely need supervision throughout his life.
This very general diagnosis followed an earlier labeling of my child that should have been unnerving, but was not at the time. Looking back, I was probably refusing to acknowledge the observation of family and friends, and the doctors' eventual findings.

ARC Early Learning Center Closing

MADISON COUNTY, N.Y. -- Madison County ARC (now the Madison Cortland ARC) in 1968 developed a program for pre-school and school aged children with intellectual and other developmental disabilities. Founded by families of children with special needs, this program paved the road to the creation of the wide range of care and supports offered at Madison Cortland ARC.
What was originally known as the Day Care Center for the Mentally Retarded 42 years ago, evolved into providing State Education and Health Department approved school age, pre-school, and early intervention programs. The name was changed to The Early Learning Center and it became an inclusive program that included children with and without special needs.
The Early Learning Center has helped hundreds of children with special needs in Madison County. Unfortunately, funding for the programs at the Early Learning Center has not kept up pace and the program has been running a deficit for many years. Madison Cortland ARC can no longer support a program that runs a deficit. The Early Learning Center programs will be closing the end of June.

Saturday, June 25, 2011

Fonz Tells Kids Bulling Isn't Cool

Came across this from England. Good to see The Fonz again and spreading an importnat message.

AYLESBURY, England -- Monday was definitely a happy day for 800 Bucks schoolchildren who got the chance to meet TV icon Henry 'The Fonz' Winkler.
The Happy Days legend was at Aylesbury Waterside Theatre to promote the My Way! campaign which highlights the needs of children with learning difficulties.
Henry, who suffers from dyslexia, has written a series of children’s books about a character called Hank Zipzer who has learning difficulties.
"I tell the children my story about growing up with dyslexia and they say: 'Wow, that's how I feel.' Or they see why their friend is like that," he said.
"I tell the kids they have to take care of each other. It's too easy to make fun of someone who is different – if there is someone in your class who isn't having a good time you should help them."

Family Raising 3 Son with Autism

VISALIA, Calif. -- On Austin Collins' 17th birthday, he sat at the kitchen counter and fiddled happily with the brand-new CD-player radio his mother, Lori Collins, gave him.
"See what I did here?" Lori said as she holds up the bright yellow string that connects the device to Austin's stool. "This way, he has to keep it down here in the kitchen. He can't carry it up to his room and destroy it. Even though he loves it, he'll end up destroying it."
This is just one of many tricks Lori has devised to streamline everyday life for her unusual family, who live in Visalia. Having three children with low-functioning autism is a challenge, but it is one that 36-year-old Lori Collins was seemingly engineered to handle.

Friday, June 24, 2011

Editorial: A Pretty Good Budget?

It's disgraceful that the Providence Journal does not speak out about the many citizens impacted by the proposed budget--cuts to services for individuals with disabilities are not "sad but necessary," as many protesting the state capitol today will attest.

PROVIDENCE, R.I. - It has been another brutal year to do a state budget, but the plan likely to be approved today by the Rhode Island House is a pretty reasonable piece of hard work.

First, while the package would extend the state sales tax to a few items and services, the House tax package looks little like Governor Chafee’s proposed two-tier system, to be applied to many items and services, and whose costs and time-consuming complexity would hurt job creation as the state struggles to get out of its long slump.

Meanwhile, to avoid big tax increases, there are sad but necessary cuts to social-service, housing, mass transit (perhaps a false economy) and some other programs in the House budget. We hope that at least some of those funds can be restored in coming years, assuming that the budgets that do so are fiscally prudent.

Child with Down Syndrome Helps Family Re-evaluate Life

SAINT PAUL, Minn. - Five-and-a-half-year-old Gabe King is a person of routine. This morning, Gabe likely woke up long before dawn in the room next to his parents in their Stillwater home. He took off his diaper, put on a clean pull-up and got dressed. Then he banged on his door, locked from the outside because he wanders, and yelled: "Awake! Awake!"

"He's an early-morning person. He'll wake up at 4:45 a.m. or 5 a.m.," Peter King said of his fourth and youngest child, who has Down syndrome. "I'm an early-morning person, too. And, you know what, I wake up to him every morning, and he has this grin on his face. And it's a great way to start the day - it really is."

Fatherhood changes a man. But some kids stretch you more than others. Gabe has brought Peter unconditional love and cheerful exuberance, tested his patience, humbled him, awakened fears about the future and challenged him to redefine success.

"We thought of ourselves as having the 'picture-perfect' life," Peter said about the years before Gabe's birth. "Three beautiful children. Their grades are good. They're athletic. They're healthy. And then suddenly you get this curveball, and your world changes."

Higher Autism Diagnosis in High-Tech Areas, Study Says

Autism experts have long noted that they meet a lot of engineers and computer programmers who have autistic children compared to, say, salespeople. A new study suggests there may be merit to those observations.

Researchers from Cambridge University in England found that nearly three times as many children were diagnosed with an autism spectrum disorder in a region of the Netherlands known as a center of high-tech industry than in two other regions with fewer high-tech jobs.

The possible explanation: Autism is highly heritable -- meaning, it runs in families -- and has a strong genetic component related to a trait called "systemizing," which is a skill for analyzing how systems work and creating them. Workers in high-tech industries -- engineering and computing, for example -- tend to excel at systemizing.

17 Wishes from an Adult with Autism

Another illuminating blog entry by the San Fransisco Chrnoicle City Brights' Laura Shumaker with recent Seton Hall graduate and adult with autism Kerry Magro.

SAN FRANSISCO- A thought provoking list from my friend Kerry Magro:


1. I wish that acceptance was easier to come by

2. I wish that loving one another was always on our mind

3. I wish that an "early diagnosis" remains a high priority

4. I wish that people would stop calling autism a disease

5. I wish that communication becomes easier for everyone with autism. We are trying.

6. I wish that we find more treatments to enhance the lives of people with autism

7. I wish that insurance for autism gets passed in all 50 states

8. I wish that the government would understand the need for services for the autistic in schools

9. I wish that autistic individuals can one day live their lives independently

Study of Autistic Toddlers May Lead to Early Detection

Researchers studying autistic toddlers have discovered their brain activity appears to be out of sync at a very early stage -- a finding that sheds light on the biology of the condition and might help in earlier diagnosis.

In research published in the journal Neuron, scientists in Israel used functional magnetic resonance imaging (fMRI) to look at the brains of sleeping toddlers and found that certain types of neural activity are disrupted in autistic children, but not in typical children or in others with delayed language development.

"What we looked at is how the activity is synchronized," Ilan Dinstein of Weizmann Institute of Science in Israel, who led the study, said in a telephone interview.

"And we found that the synchronization was different -- specifically in toddlers with autism and across the hemispheres (of the brain) in areas related to language and communication."

Health Clinic for Developmentally Disabled a Success

CHICAGO- Little City resident Tony LaPorte loves to boast that he brushed his teeth and says he can’t wait to go back to the dentist, a remarkable transformation in attitude considering he dreaded those visits not too long ago.

But the 24-year-old, who has Down syndrome and lives on the foundation’s Palatine campus, isn’t the only one to have a change of heart.

A year since opening its Center for Health and Wellness, Little City is reporting similar success stories and numerous other healthy strides due to a partnership with Northwest Community Hospital that overhauled the way residents receive medical and oral care.

“There’s a gentleness here, how we treat folks with intellectual and developmental disabilities,” Little City’s Director of Programs and ancillary Services Bob Shears said.

Autism Insurance Reform Bill Sent to Governor

ALBANY, N.Y. - State Senator Charles J. Fuschillo, Jr. (R, Merrick) and Assemblyman Joseph D. Morelle (D, Rochester) today announced an agreement between the Legislature and the Governor’s office in support of legislation to enable individuals with autism spectrum disorders to receive insurance coverage for screening, diagnosis and treatment. The bill (S.4005-B) would save tens of thousands of dollars in out-of-pocket expenses spent by families caring for individuals with autism and address insurance companies’ refusal to cover costs for autism treatments and therapies.

Autism Spectrum Disorders affect individuals of all ethnic, racial, and socioeconomic groups. The Centers for Disease Control (CDC) estimates that 1 in 110 children, including 1 in 70 boys, are currently affected with autism.

The legislation, which has been approved by the Senate and the Assembly and will shortly be sent to the Governor’s office for his signature, requires insurance companies to provide coverage for the screening, diagnosis, and treatment of autism spectrum disorders, including behavioral health treatments, speech therapy, occupational therapy, and physical therapy. Insurance companies would be prohibited from terminating coverage or refusing to renew, adjust, amend, issue, or execute a policy solely because the individual has been diagnosed with or received treatment for autism spectrum disorders.

R.I. Protesters Decry Proposed Budget Cuts

PROVIDENCE, R.I. — They came on foot and, in some cases, in wheelchairs, gathering more than 250 strong at the State House on Thursday to protest budget cuts they say will hurt one of Rhode Island’s most vulnerable populations — people with developmental disabilities.
"My son Patrick is multi-handicapped and lives in a group home in Middletown," Cynthia Feighan, one of about a half-dozen speakers, told the crowd that gathered in the State House rotunda. "He needs help getting dressed, going to the bathroom. Someone needs to prepare his meals and help him eat his meals. He needs help getting into bed, getting out of bed, turning on a radio, turning it off."
But with the House of Representatives poised to vote Friday on a budget that would cut spending for developmental disability services by about $24 million, according to figures from the advocates, Feighan and others wonder what will happen to their loved ones.

Thursday, June 23, 2011

Hooves, Heart and Hope for Children with Autism

HOUSTON- While the reasons why may not be fully understood, the idea is widely accepted that horses can sometimes have a therapeutic effect on human beings.

Horses are therefore utilized in several forms of therapy for people with disabilities, and multiple equine therapy organizations operate in the United States.

One of those is Spirit Horse International, based in Corinth, Texas, and an affiliated facility known as Spirit Horse JC Ranch, recently began operation in southeastern Texas County.

Spirit Horse JC Ranch president and director Jenni Spacek-Elseman is a Summersville native who has twin three-year-old boys with autism - Creek and Jesse James. After hearing about Spirit Horse and its many success stories, Spacek-Elseman purposed to open a branch in south-central Missouri. She made an arrangement with the owners of a 415-acre tract of land north of Willow Springs that includes a home and a 72,000 square-foot indoor rodeo facility formerly known as Soaring Eagle Arena, and she and her family members moved in about a year ago.

Children with Disabilities Take a New Ride

SPRINGFIELD, Ill. - Maggie George of Springfield was riding a two-wheel bicycle Wednesday without training wheels, and her mother was ecstatic about her daughter's accomplishment and reaction.

"I haven't seen that big a smile in a long time, " Donet George told 11-year-old Maggie. "Good job, sweetie."

Maggie, who has autism, is learning a new skill and gaining confidence during a camp operated by Lose the Training Wheels, a not-for-profit organization that works throughout the United States and Canada to help people with physical and intellectual disabilities learn to ride a bicycle.

"Riding a bike is a rite of passage for a lot of individuals, " said Cory Bunner, 25, a physical-education teacher from Jacksonville and bicycle technician with the group. "We hope this skill will open up new avenues for our participants. It's a great way for these kids to be successful."

Leave No Child Behind

PASADENA, Calif. -- On the evening of June 6, Tony and Mary Brandenburg convened with friends and fellow parents in front of the University Club of Pasadena. In just one hour, Pasadena Unified School District officials, parents and teachers would start arriving for an awards ceremony intended to honor the efforts of those who work on behalf of more than 2,200 students in the district's special education programs.
But the Brandenburgs weren't there to celebrate — they were there to protest.
Members of their small group assembled around a pickup parked in front of the club entrance and festooned with posters reading: Inclusion means everyone. Bullying is not OK.
The parents'claim? Their 8-year-old son, whose name they asked be withheld, was bullied out of his second-grade class at Sierra Madre Elementary School by classmates and their parents, the latter of whom, they report, held meetings off campus to discuss his removal. His crime? Unruly behavior brought on by autism.

Family Receives Free Autism Service Dog

ROCHESTER, N.Y. - For Brockport resident Amy Johnson and her husband, Hal, life has not always been easy. Their 17-year-old daughter, Amber Wicks, has a rare brain disorder causing seizures, and their 7-year-old son, Rex, was diagnosed with autism when he was just 2.

Johnson says Rex is non-verbal and has a tendency to run away when faced with even small challenges, so safety has always been an issue. "When he was little, we were able to catch him, but now that he is faster, bigger and stronger, we have to keep locks on all of the doors to keep him safe."

But life is about to get significantly better for Rex and his family. Last month, Johnson found out Rex had won a free therapy dog from Siberian Snow Babies, a company that sells and trains autism service dogs. Johnson says she knew a dog would help her son but the cost — $20,000 to cover a full year of specialized training — was prohibitive.

As Johnson was researching dogs and planning fundraisers, she saw the Snow Babies' ad for a nationwide giveaway as a promotion to raise autism awareness. She immediately applied, creating a video of Rex interacting with dogs and assembling more than 20 pages of documentation and letters from Rex's doctors, teachers and friends.

"We were floored and shocked that we won this dog," Johnson says. They found out mid-May that out of all the applications, Rex was chosen to receive James, a newborn puppy that will be trained to specifically meet Rex's needs.

Summer Camp Brings Fun to Children with Autism

LUBBOCK, Texas- As Lane Barnett grew up, no camps existed for children like her.

Now, Barnett, 31, helps give other kids a chance by volunteering at the Burkhart Camp for children with autism.

"I see it through their eyes," said Barnett who was diagnosed with autism at age 18. "I know how hard it is."

She works with nine other students from the Burkhart Transition Academy, a post-secondary school for young adults focused on helping them find jobs.

Since 2005, the Burkhart Center for Autism Education and Research has provided services to people with autism and their families, while educating future teachers.

But this is the first summer they've held a camp.

"This population of kids, they didn't have a camp to go to," said Janice Magness, director of the Burkhart Transition Academy and the camp.

Autsim Therapy Coverage Nears OK

PROVIDENCE, R.I. — Her voice breaking, Joanne Quinn said she hopes no Rhode Island family ever again experiences what she did:

Twelve years ago, when her 4-year-old son, Patrick, was newly diagnosed with autism and barely able to talk, Quinn’s health insurer refused her request for the intensive treatment he needed. The insurer would cover only six weeks of speech therapy, Quinn recalled.

On Wednesday, Quinn, now director of the Autism Project, joined others at a State House news conference marking House and Senate passage of companion bills to require health insurers to cover up to $32,000 a year in autism diagnosis and treatment, including behavioral therapies that have proven effective in improving a child’s quality of life.

The bills, identical compromise versions that involved extensive negotiations with health insurers, would cover children until their 15th birthdays.

"Sensitive Sensory Cinema" for Children with Disabilities

ANN ARBOR, Mich. -- Rave Motion Pictures has introduced a new monthly series of movie screenings called "Sensitive Sensory Cinemas," geared to families with children who have special needs—specifically, those who have a disability or are on some stage of the autism spectrum.

In an announcement of the series, Jason Wiles, lead manager at Rave, wrote, "We realize that bringing children with autism to the theater can be quite a challenge. Each child reacts differently to the normal conditions of the theater, darkened theaters, and loud sound systems. These shows are shown at a light and sound level which will be more inviting for these families.

"We also realize that the normal standards of theater etiquette of 'please sit and be quiet' can also be challenging. We want to emphasize that during these performances, the lighting will be left on high, the sound will be turned down, and our patrons are free to talk, sing, or move around the theater during the show."

Tennessee Budget Cuts Mean Big Changes

NASHVILLE, Tenn. -- With budget cuts looming, Tennessee is cutting nursing and personal assistance services for people with intellectual and developmental disabilities in the new fiscal year, limiting aid services and placing more people in community-based homes.
As of May, about 1,827 persons with intellectual and developmental disabilities received letters that their one-on-one nursing services would be reduced to 12 hours a day and personal assistance services limited to 215 hours a month, according to a Tennessee Department of Intellectual and Developmental Disabilities news release.

Wednesday, June 22, 2011

Autism Aid for Military Families

NEW YORK, N.Y. -- Autism Speaks, the nation's largest autism science and advocacy organization, Wednesday applauded Congressmen John Larson (CT-1) and Walter Jones (NC-3) for introducing bipartisan legislation that would assure military families receive necessary therapies for dependents who have autism.
The legislation would clarify that TRICARE –- the Department of Defense's health care program for members of the uniformed services and their families –- covers medically necessary autism therapies, such as Applied Behavior Analysis for dependents of both active duty and retired service members who have autism.
The bill was introduced as the 'Caring for Military Kids with Autism Act.'

A Sobering Look at ID/DD Services

Came across this piece from The New Republic by Harold Pollack, a professor at the University of Chicago School of Social Service Administration

Pardon my excursion into graphs and scatterplots today. There is a broader purpose.
Last Tuesday I hit the "send" button on a big grant concerned with intellectual and developmental disability (I/DD) policy issues. Last Wednesday, the bible of the field, State of the States in Developmental Disabilities, appeared in my mailbox. Such is life.
State of the States is a periodic compendium of state policies, service patterns, and spending across the country. (It’s a telling commentary on the separation between disability policy and health policy wonkdom that few among the latter group even know that State of the States exists.) It has been a few years since David Braddock and his University of Colorado colleagues put out the last version of this book.
The 2011 edition extends previously-available data from 2006 to 2009. As such, it provides a sobering window into the human impact of the current recession. I/DD services serve a highly-valued, highly-vulnerable population. Yet these services are also quite costly, particularly to states and localities having difficulty carrying the load. States' different approaches to preserving or to cutting these services in hard fiscal times thus provides a real signal of states' larger values and vision of government.

Comments By OPWDD's Burke About Developmental Centers Misunderstood

TUPPER LAKE, N.Y. - Sunmount DDSO is not scheduled for closure.
"It's totally false," village Mayor Mickey Desmarais said Wednesday. "They're not going to close Sunmount down."
Courtney Burke, head of the state Office for People With Developmental Disabilities, caused a wave of panic in this town of 6,000 people when she appeared on the WCNY radio show "Capitol Pressroom" Monday.
Host Susan Arbetter asked if the OPWDD plans to close Sunmount, and Burke answered her, "We are seeking to close all of our developmental centers by the end of 2014."
But Burke's spokesman Travis Proulx said Wednesday that the whole thing is a misunderstanding. He said there is a plan to close down all of the state's developmental centers, but that Sunmount is a "developmental disabilities services office," not a developmental center, so her answer didn't apply to it.

Obama Marks Anniversary By Renewing Commitment to People with Disabilities

WASHINGTON, D.C. - On June 22, 1999, the Supreme Court ruled in Olmstead v. L.C. that, under the Americans with Disabilities Act (ADA), the unjustified institutional isolation of people with disabilities was a form of unlawful discrimination. Since taking office, the Obama Administration has taken many steps to uphold both the letter and the spirit of the ADA.
"The landmark Olmstead case affirmed the rights of Americans with disabilities to live independently," said President Obama. "On this anniversary, let's recommit ourselves to building on the promise of Olmstead by working to end all forms of discrimination, and uphold the rights of Americans with disabilities and all Americans."

Cheerleaders Root on Children with Down Syndrome

BARRINGTON, Ill.-- For three weeks, Barrington High School’s cheerleaders have been teaching different routines to young girls with Down syndrome, but it has been the varsity squad that has been learning a thing or two from the kids.

“(Gigi’s Gems) have given us a different prospective,” Alexa Hanaford said of working with the aspiring girls with Down syndrome who are a part of Gigi’s Playhouse. “Their outlook is so different, and they are always so happy.”

“It’s been awesome and the whole experience has been unbelievable,” Melissa Mersch, one of the many co-coaches and varsity cheerleaders working with the young girls said. “Everything is just so positive when you are around them.”

Advocates Praise Autism Therapy Pay Bill

ALBANY, N.Y. -- Trish Washburn's son Buddy, who has an autism spectrum disorder, didn't speak until he was 4 years old.

Washburn, who lives in Colonie, said she cried at night thinking about the life Buddy would have if he couldn't talk.

"I became a crazy mom and made sure he got the things he needed," Washburn said.

Her insurance company denied payment for speech therapy, so she found grants. Buddy, now 10, talks nonstop.

The state Legislature passed a bill last week that would require insurance companies to pay for therapy for autistic children. Gov. Andrew Cuomo has not signed the bill into law yet.

Girl Scouts Redecorate Home of Men with Down Syndrome

UNION GROVE, Wis.- Rudy Garcia loves pencils. There's just something about them.

Garcia, who is 58, has Down syndrome and the mental age of a 3- to 5-year-old. He carries pencils with him all the time. He twirls them in his hand, taps them on nearby surfaces and sneaks them into his pockets.

So this weekend when a Waterford troop of high school-aged Girl Scouts performed a makeover of the home where Garcia lives, they made sure pencils were part of his bedroom design. The girls mounted a custom-made 6-foot tall pencil on one wall and arranged new packs of pencils on the bed.

When Garcia saw them Sunday during a makeover reveal, his face formed an "oh" of surprise, then a wide smile.

"Nice work," he told the girls, already ripping into the new pencil packages.

Researcher Seeks Genetic Answer to Autism

PROVIDENCE, R.I.-- Three papers published recently in the journal Neuron shed new light on the genetic roots of autism. Dr. Eric M. Morrow, a Brown University professor of biology and psychiatry and director of the Developmental Disorders Research Program, participated in the research.

As part of an occasional series on local researchers, Journal Medical Writer Felice J. Freyer last week talked with Morrow about the Neuron papers and his work at Brown. Below are condensed and edited excerpts of their conversation.

What was learned from the study published in Neuron?

This study could contribute to our understanding of what causes autism and potentially even be used in diagnosis and treatment based on the genetic findings.

Emotion High Over NJ Plan to Close Disability Home

VINELAND, N.J. — Karen Lee Colletti has severe autism, speaks only a few words and needs a diaper. When she was 27 and her parents felt they couldn't care for her at home any longer, they moved her to the Vineland Developmental Center, which cares for women with developmental and intellectual disabilities.

That was 29 years ago. Now, her 80-year-old father, Vito Colletti, fears the state's plans to close the center by 2013 will happen, pushing his daughter out of a place that he thought she could live for the rest of her life. It's discomforting for a man who's come to rely on the care she gets at the state institution. After a hard time difficult adjustment from a move last month from one part of Vineland's campus to another, he fears a longer move to one of the state's remaining institutions would "drive her bananas."

He's joined the fight of the 1,300 developmental center employees who could lose their jobs — and officials around the southern New Jersey community of Vineland — in trying to persuade the state to leave the center open.

School Finds Gifts in Autistic Children

Berwyn, Ill. — Karol Sigda is as bright as he is troubled.

He knows nearly every dinosaur and the era they came from, but gets so frustrated by handwriting that he struggles to complete book reports. The 8-year-old Berwyn resident already has developed plots for three more “Star Wars” sequels, but sometimes lacks the social skills to effectively communicate with his classmates and teachers.

Sigda has Asperger syndrome, a high-functioning diagnosis within the autism spectrum of disorders.
From an education standpoint, Sigda is problematic. He’s years ahead of his classmates in many ways, but still occasionally throws tantrums or just shuts down if he feels bored.

Rather than put Sigda and other children like him in special education classes, Havlicek Elementary School Principal Nancy Akin decided to try something new. Sigda and two other autistic third-grade boys were placed in a gifted program known simply as AIMS at the beginning of the most recent school year.

“We have known Karol and how bright he is since he’s been in kindergarten, and we wanted to give him and the other kids a chance to use their intellect,” Akin said. “One of the things that they talk about in the AIMS program is that every student has the right to optimal development, and we believe that too often, kids that are bright but have some kind of disability, for whatever reason, aren’t given that chance.”

Autism Insurance Bill Nears Passage

PROVIDENCE, R.I. -- A measure that would require insurance companies in Rhode Island to provide coverage for the diagnosis and treatment of autism is nearing final passage.

The House passed the bill Tuesday, and the Senate passed an identical bill last week. The bills need to be reconciled before they go to the governor.

According to a General Assembly news release, the legislation would require private insurers to provide up to $32,000 a year in benefits for medically prescribed behavioral therapies for children with autism, up to the age of 15.

'Lion King' to Test Autism-Friendly Performance on Broadway

Came across this on the Orlando Sentinel's Theater Blog. Hadn't heard a word about it but bravo to the Theatre Development Fund.

With autism affecting a growing number of families, I thought this was interesting: The Theatre Development Fund (TDF) is testing a new program, called the Autism Theatre Initiative, to make theater accessible to children and adults on the autism spectrum, and their families.
And how appropriate that the first Broadway show to test an autism-friendly performance is a show with strong child appeal: Disney's "The Lion King." The Oct. 2 matinee of "The Lion King" at the Minskoff Theatre (200 W. 45th St., New York) will be modified to better suit those with autism and related conditions.

Advocates Praise New York's Autism Bill

ALBANY -- Trish Washburn's son Buddy, who has an autism spectrum disorder, didn't speak until he was 4 years old.
Washburn, who lives in Colonie, said she cried at night thinking about the life Buddy would have if he couldn't talk.
"I became a crazy mom and made sure he got the things he needed," Washburn said.
Her insurance company denied payment for speech therapy, so she found grants. Buddy, now 10, talks nonstop.

Mom Raises Awareness and Shares Support with Facebook Group

MAYBROOK, N.Y. -- From day one, Shari Heter of Maybrook wanted to reach out to others.
"I felt like I had a story to tell — even though I didn't know the whole story," she says. "But to be shut down and shut down before finally being validated, I was ready to yell from a mountaintop."
About six months or so ago, Facebook became the platform from which Heter's voice — and now more than 200 other voices — is heard.

Tuesday, June 21, 2011

Camraderie Breeds Confidence

SILVER SPRING, Md. -- Mohammed "Kumail" Abbas tossed a small yellow ball onto the lawn on an eye-squintingly bright afternoon outside James Hubert Blake High School in Montgomery County. He and three other students with Down syndrome were playing bocce ball, in a lesson that offered a glimpse at a traditional form of special education that is becoming less common across the country.
"What's the name of the ball, again?" asked teacher Heather Cory.
Some special-needs students at Blake High School in Montgomery County spend their days building life skills and self-esteem — and their softball abilities.
"A pa-, pa-, pallino," Kumail said, drawing a rousing "Good job!" from his teacher. When his teammate threw a larger red ball and his opponent threw a larger blue ball, Cory led a discussion on how the relationships among the balls determined a winner.
"Which one is closer to the pallino?" she asked.
In bocce, as in special education, the discussion is often about relationship

Wandering Children with Autism

Creve Coeur, Mo -- A 10-year-old boy with special needs is safe after running away from school on Monday. Doctors say so-called "autism-related wandering" is common for people with developmental issues including autism.
"Parker is five and a half. He was diagnosed with autism when he was two," said Amy Lim of Creve Coeur.
Lim says in the past two weeks, her son, Parker, ran away from home twice.
"It is really difficult going out in public or even just at home. If he chooses to leave the yard he will find a way to do it," said Lim.

N.J. Bill to Increase Awareness of Programs Availalable for People with Disabilities

TRENTON, N.J. -- The quality of life for New Jerseyans with developmental disabilities is not improving, and in fact is diminishing due to the economic crisis. However, a ray of hope exists with a recent attempt by members of the State Legislature to begin with a compilation of data about these individuals.
New Jersey State Assembly members Valerie Vainieri Huttle, Upendra Chivukula and Ruben J. Ramos Jr. have introduced a bill in the lower house that is designed to arouse public awareness of New Jerseyans with Developmental Disabilities, and to increase enrollment of these individuals with special needs in public programs that were created to serve them.

Minnesota Government Shutdown Looms

ST. PAUL, Minn. -- Less than two weeks before the far-reaching mechanisms of Minnesota's government might come to a halt, Jessica Lund's mind is filled with thoughts of snikerdoodles. Lund, 38, has Down syndrome and was helping to bake the cinnamon-sugar cookies with a care worker in a group home on a recent afternoon. Five other adults with developmental disabilities live with Lund in this 2,000 square-foot rambler that looks like any other on a suburban block of Golden Valley — one of many homes run by Hammer, a private non-profit that's funded almost entirely by taxpayer money. Like the thousands of the state's most vulnerable citizens, Lund doesn't have a voice in the legislative brinkmanship that threatens to disrupt her life.
Minnesota's political leaders failed to pass a budget by the end of the legislative session on May 23. Now, the clock is ticking down to a fiscal deadline of June 30, the end of the current budget biennium, when lawmakers are required to pass another two-year budget that will close a $5 billion deficit.

Sports Helps Student Deal with Autism

NAPLES, N.Y. — Ian Liebentritt was just 13 years old when Greece Athena High School's Jason McElwain, who was diagnosed with autism at a young age, stepped into that national spotlight after playing in the team's final regular season game.
"It was an incredible story how he just came off the bench and scored 20 points in four minutes," said Liebentritt, who is also autistic. "In 11th grade, I didn't play much and I often would think of it as I had this many points and J-Mac had 20 in four minutes."

Parents Sue Philadelphia School District

PHILADELPHIA -- Four parents have filed a class-action lawsuit on behalf of their autistic children, alleging that the Philadelphia School District is illegally moving the children from school to school based solely on their disability.
At issue is the district's Automatic Autism Transfer Policy, which mandates that students with autism move to another school at the end of third and fifth grades. Non-autistic students do not have to move.

Monday, June 20, 2011

Communicate to Work

Everyday, millions of conversations take place across the country. Employers ask, teachers tell, and friends talk. Communication, it is said, is the key to success. For many people with developmental disabilities who cannot speak, the lack of basic communication is an ever present barrier in developing relationships, finding a job, being hired, or performing a job optimally. Other than a few exceptions, people who cannot talk do not work. An inability to effectively communicate with peers, employers and support staff most often leads to stereotyping, social rejection and failure in the workplace. Frustration caused by an inability to express basic needs becomes a "behavior problem" to be fixed, rather than recognized as a signal that someone has something important to say but cannot.

Ozark Center for Autism Plans to Rebuild After Joplin Tornado

JOPLIN, Mo. -- Families whose children get some of the best autism services available are scrambling for help after a prominent treatment facility was destroyed in the tornado that ravaged the city of Joplin last month.
The Ozark Center for Autism, which has a national reputation and draws families to the area, offers hands-on, intensive therapy at an early age. The program had recently added a diagnostic team and was slated to expand with services for adults, including vocational training. But the May 22 tornado that pummeled the city, killing more than 150 people and injuring hundreds, demolished the center.
It has relocated to an indoor skate park on the outskirts of town until it can move to another temporary facility closer to its previous location. But fewer families can easily reach the current location, and while Ozark Center staff members have increased their number of home visits, they are concerned that some children could see their progress halted.

Progress Seen Amid Battle Against Bullying

SANDY, Utah — At 12 years old, in honor of Martin Luther King Jr., Hannah Gilbert sat down at the computer, chose a fancy font and, using short, simple sentences, laid out her life's dream in an essay.
"My dream is to help little kids with special needs like me," wrote the little blonde, who has Down syndrome. "Please treat special needs kids good and don't be mean."
According to the National Center for Education Statistics, 85 percent of children with disabilities are targets of bullying. In a recent study conducted by Community Gatepath, a California-based nonprofit that serves people with disabilities, researchers found maltreatment wasn't isolated to verbal abuse or ridicule, but also included physical abuses like tying children up or force feeding them dog food and alcohol. Sixty percent of children with disabilities are harassed to the point of physical injury.

Ruling Requires Pennsylvania to Move People From Institutions to Community

HARRISBURG, Pa. -- Hundreds of institutionalized mentally disabled people must be released to community programs starting this year to meet a settlement that has been struck to end a federal court battle.
The accord is expected to cost the state as yet untold millions of dollars.
It stems from a federal judge’s ruling that the Department of Public Welfare was violating the Americans with Disabilities Act by not having a system to allow those people to get out of state-run intermediate care facilities.
"At this point, we don't know what the exact cost might be," DPW spokesman Mike Race said Thursday.
Estimates in the settlement state that at least 300 institutionalized clients statewide already have expressed interest in returning to the community.