Corrective Steps Announced After Maryland Agency Returned Unused Funds

ANNAPOLIS, Md. — After Maryland’s Developmental Disabilities Administration had to give more than $25 million in unspent state funds back to the general fund, the health secretary told lawmakers he’s acting to correct the situation.
Health Secretary Joshua Sharfstein told members of the Senate Finance and Budget and Taxation committees he was shocked to hear of such a large expected surplus at the agency that supports services such as residential care, employment, day programs and respite care through a federal Medicaid waiver and state-only funding.

Finding Good Apps for Children with Autism

The Apple iPad has been hailed as a savior for assisting children with autism spectrum disorder or other special needs. It was portrayed as a minor miracle in a recent segment on “60 Minutes” and has been found to help even the very young quickly learn.
Anecdotally, teachers, parents and therapists describe the profound difference that apps for Apple and Android products have made in helping autistic children develop skills. IPad programs have provided a means of communicating for some children with autism who cannot speak or have language delays. Other apps help children learn to handle social situations that can be stressful, like crowds at malls. And many programs can help develop fine-motor skills, which promote functions like writing or manipulating small objects.

Seeking Work? Join a Job Club

From Laura Shumaker's blog at SFGate.com

My 25 year old son Matthew, who is on the autism spectrum, loves to work. He’s developed great skills as a gardener, but like most people who are looking for employment in this economic climate, he needs help understanding how to approach prospective employers. This is not something that comes to him naturally.
Today, Michael Bernick, the former director of the California Employment Development Department and an inspiring leader for the employment of people with disabilities, talks about a solution minded idea for individuals on the autism spectrum to find work:

Bills Host Special Football Clinic

BUFFALO, N.Y. -- For disabled but able kids, the Buffalo Bills Healthy Zone Fieldhouse played host to a unique and fun football clinic November 28^th, and wide receiver David Nelson was on-hand to help the children learn about football. The Donny Thiry Foundation Football Clinic, run by the Town of Hamburg, N.Y. Recreation Department, was held each Monday in November.
Bonnie and Don Thiry have helped continue the clinic for the past five years in memory of their son Donny, who passed away from a series of complications related to a disease called neurofibromatosis. The clinic was open to individuals with physical/mental disabilities, Aspergers Syndrome and high functioning autistic children. The participants are disabled but able to participate in the activities.

Disabilities Agency Going on the Ballot

MARION, Ohio -- By continuing to show residents they respect the tax dollars they are given, the Marion County Board of Developmental Disabilities hopes it receives continued support from residents.
Voters will be asked to renew a capital improvement levy for the agency in the March 6 primary election. It is funding that will expire at the beginning of 2013 if the levy fails.

Matthew Sappolin, New York City's Disabilities Commissioner, Dies

NEW YORK -- Matthew P. Sapolin, the Bloomberg administration’s disabilities commissioner, died of cancer on Tuesday. He was 41.
Sapolin, whose death was confirmed by the mayor’s office, had served as commissioner for the Mayor’s Office for People With Disabilities since the post was created in 2006. In that role, he pushed to make New York City’s building code more accommodating to people with disabilities, created a mentoring program and led an effort to freeze rents for some disabled New Yorkers.

Loss of Funds Upsets Maryland Families

BALTIMORE -- Health Secretary Joshua Sharfstein will try to explain to the Senate Finance Committee Wednesday how the Developmental Disabilities Administration left $38 million unspent over the last two years while 6,500 patients sit on a waiting list for state funding.
None of those with disabilities or their caregivers are scheduled to testify at tomorrow’s hearing, but they are planning to give Sharfstein and DDA Director Frank Kirkland a piece of their mind at a town hall meeting that evening in Severna Park.

The Future of Down Syndrome

Perhaps the most important thing you need to know about Melanie Perkins McLaughlin is that she's not pro-life or pro-choice or pro anything — other than pro-information.
When a distraught pregnant woman phones a Massachusetts hotline for Down syndrome, agonizing over what to do with an unexpected prenatal diagnosis, she will be routed to Perkins McLaughlin, who went through the same awful calculations in 2007. When Perkins McLaughlin learned halfway through her pregnancy that her daughter would have Down syndrome, she nearly decided to end the pregnancy for fear of what it would do to her marriage and her two older children.

Aging Parents Face Difficult Decision

It took Maureen and Joseph Pallatta a long time to decide that their eldest son needed to be cared for by someone else.
“Twenty-five years I had him at home,” said Maureen. “He is completely dependent. He’s 45, he’s still in diapers, he’s non-verbal, he has seizures.”
Joey developed his condition – the cause of which has never been diagnosed – when he was a toddler, and some doctors advised placing him in an institution. But that was not a possibility the Pallattas were willing to consider.

New Jersey Caregivers Struggle to Get By

This story hits the sad reality that the people who are entrusted with the care and safety of people with disabilities are hurting. The low wages are not just in New Jersey. It's throughout the country. If you want to learn more about these workers -- known as Direct Support Professionals (DSPs), I urge you to visit youneedtoknowme.org and get involved with the American Network for Community Options and Resources National Advocacy Campaign. We can't afford not to invest in DSPs.

Pat Faley is in charge of 74 supervisors and staff who care for nearly five dozen of the most physically needy individuals in New Jersey.
She has spent the past 12 years as the residential coordinator at the Spectrum for Living Intermediate Care Facility in Closter. All told, she’s worked in various supervisory jobs for more than 25 years at Spectrum, a non-profit organization that operates a variety of programs for the developmentally disabled.
Her compensation: $40,000 a year.
“I have a second job, too, at Stop & Shop. I work eight hours a day here and then five there,” Faley said. “I couldn’t live on just what I make here. I’m 66, and I don’t know when I’ll be able to retire. I did not think I’d be working two jobs when I was 66. I’d like to be spending my time with my grandchildren.”

Time to Hire People with Disabilities

When the Americans with Disabilities Act was initially passed, Congress recognized that more than 40 million Americans qualified as “Disabled.” Since then that number has increased as the courts gave expansive interpretation to the definition of a “disability.”
With 14 million people now out of work and no relief to the economic crisis in sight, what is the disabled job seeker to do? Most employers now understand that it is their obligation to make reasonable accommodation for the disabled, but some employers would argue that doing so gets much more difficult when businesses are trying to do more with less.

Maryland Panel To Probe Unused Funds

ANNAPOLIS, Md. -- Members of the state Senate Finance Committee will receive a briefing Wednesday from health department officials on how the Developmental Disabilities Administration failed to spend $34.5 million in state and federal funding at the same time the department has a long waiting list for its services.
The committee wants to know from Department of Health and Mental Hygiene Secretary Joshua Sharfstein how an accounting irregularity occurred and what department officials are doing to fix the problem, said Sen. Thomas M. Middleton (D-Dist 28) of Waldorf, the committee’s chairman.

Study: Bigger Brains in Certain Types of Autism

A new study adds to an increasing amount of evidence suggesting a link between brain size and autism.
Researchers at the Mind Institute at the University of California at Davis have found that children with a certain type of autism, called regressive autism, generally have larger brains than children without the disorder, and for kids with early onset autism.
A number of recent studies have found a link between brain size and autism, confirming suspicions long held by many autism experts that the disorder is linked to neurological growth and development. But the authors of this latest study, David G. Amaral and Christine Wu Nordahl, say their findings, published in the Proceedings of the National Academy of Sciences, indicate that the causes of autism may vary among children with different types of the disorder.

How Practices Can Make Room for Mobility

Lisa I. Iezzoni, MD, MSc, has not been weighed in nearly two decades. The last measurement was taken when she still could stand -- before multiple sclerosis made her rely on a wheelchair.
Similar to those in many doctor's offices, the scale where Dr. Iezzoni sees her primary care physician is not wheelchair-accessible.
As a patient and an expert on disabilities, she understands the challenges that people with mobility impairments face when trying to access medical care. She said each obstacle, no matter how small, can send patients with mobility limitations a hurtful message. "It tells people with disabilities, 'You are not welcome here. I do not give the same quality of care to people with disabilities,' " said Dr. Iezzoni, a professor of medicine at Harvard Medical School.

Temple Grandin Joins Twitter

Temple Grandin, the autistic doctor who revolutionized animal sciences and whose life story became an Emmy-winning HBO movie last year, has started on Twitter.
Tweeting under the name TempleG2697, her new account — opened two weeks ago — reads simply:
“Hello. My name is Temple Grandin, it’s very nice to meet you.”

N.J. Families Face Uncertain Future

Aida Figueroa breaks down as she contemplates what the future might hold for her developmentally disabled son, Valentin Jr.
“What will happen when we’re gone?” she asks, excusing herself for weeping in front of a visitor.
With the intellectual capacity of a young child, Valentin will never be able to care for himself. That responsibility now falls on Aida and her husband. She’s 77 and he’s a 73-year-old survivor of heart-bypass surgery.
Their 45-year-old son is one of nearly 8,000 disabled adults on the state’s waiting list for placement in a group home and other community-based services. Even though he’s considered a priority case, his number is not likely to come up for years.

Transition to Adult Services Often Rough

Up until the age of 21, federal law requires local school districts to provide educational and support services for developmentally disabled individuals – either within the public schools or by paying for a private school to do so.
Once they become adults, that responsibility shifts in New Jersey to the Division of Developmental Disabilities. But the transition is rarely a smooth one.
Division case managers, families and school officials are supposed to meet well before a child’s graduation to work out a plan for the services he or she will need as an adult. But that doesn’t always happen, and even when it does, the division doesn’t connect families directly with agencies that fit the disabled individual’s needs.

Walgreens Hiring People with Disabilities

MILWAUKEE -- Persons with disabilities are often a forgotten or ignored portion of the unemployment statistic. Now the nation's largest drug store chain is working to use a local success story to call attention to a nationwide issue.
Sofia Walz-Chojnacki was hired one year ago at the Walgreens at 68th and State streets as part of a partnership program with Creative Employment Opportunities, an organization that helps people with developmental disabilities find work.
"She was really just looking for something else and it just came to work that Walgreens was a good fit for her," said Walgreens manager Trina Wankowski.

New Jersey Struggles to Boost Community-Based Services

TRENTON, N.J. -- The commissioner tried to explain why New Jersey needs to close one of its seven institutions for the developmentally disabled if it is to care for more of the 40,000 adults in the state who can’t take care of themselves.
But she was nearly drowned out by boos and catcalls from those in favor of the status quo: public employees with jobs at stake and families of residents at the Vineland Developmental Center who don’t want their loved ones relocated.
Nearly lost amid the throng at the raucous hearing earlier this year was the mother of Derek Legutko, a 26-year-old with autism who’s living at home while waiting for a community placement. It’s already been four years, and likely to be a lot longer.

Opinion: Rights Should Trump Budget Cuts

From the Press Democrat, column by Cami Weaver, chief executive officer of Becoming Independent, based in Santa Rosa.

The year 1977 was a breakthrough for California when Gov. Jerry Brown, then in his first term, signed the Lanterman Developmental Disabilities Act. This was named for Republican Assemblyman Frank B. Lanterman of Los Angeles, who during 28 years in office fought for people with disabilities.

The Lanterman Act, considered one of the nation's guiding standards, ensures equal rights for Americans born with disabilities. Lanterman enabled thousands of citizens to move from lonely, isolated institutions into the community. It is no less important to our country than civil rights, voting rights, gay rights, women's rights, any of the great human rights movements of our times.
Last June, 34 years later, Brown, now in his third term, signed a budget that threatens rights under Lanterman if the state can't raise enough taxes to pay its bills.

Support for Mom of Kids Killed in Crash

PHOENIX (AP) — Friends and acquaintances are lending support to an Arizona mother who lost her three children and her ex-husband in a plane crash in the Superstition Mountains.
Karen Perry, of Apache Junction, Ariz., has experienced a series of struggles in recent years and is described as a selfless woman trying to raise her three children. Morgan Perry, 9, was diagnosed with epilepsy and faced multiple brain surgeries. Luke Perry, 6, had autism. Perry's third child, Logan Perry, was 8.
"They were just great kids," said Mark Blomgren, principal at Peralta Trail Elementary in Apache Junction, where the two oldest children attended. "All the teachers were naturally shocked. They cared about them and wondered how their mom was doing and they were just hit pretty hard. Logan and Morgan were just special kids that the teachers really bonded with."

Nathan Goes to Washington

RICHFIELD, Minn. -- Nathan Bauer is proud of his home and he's giving a tour to his new friend.
"I call this the entertainment room," Nathan says as he shows his guest to the front of the house.
"You've got your CD's much better organized than I have my CD's," says Senator Al Franken.
That's right Senator Al Franken is Nathan's guest and new friend. The 33-year-old has developmental disabilities and met the Senator at an event with Hammer. Hammer helps people, like Nathan, live independently and realize their dreams.
"He's pretty impressive, he's a pretty impressive guy," says the Senator.
Franken is impressed with how outspoken Nathan has been as both a self-advocate and an advocate for other people with disabilities.

'Everyone Deserves a Shot'

CREVE COEUR, Mo. -- Carl Weleba never held a camera until he was 73.
Then a few months ago, an instructor at Life Skills approached Weleba about taking part in a program called "Everyone Deserves a Shot." That's when Weleba, who has a lifelong intellectual disability and is unable to live on his own without a Life Skills companion, got his chance.
Life Skills handed out cameras and instruction in basic photography to Weleba and 11 other people with developmental disabilities ranging from intellectual disabilities to autism to Down syndrome. They range in age from 21 through 73.

Choral Ace Faces Uphill Battle to College

LAWRENCEVILLE, Ga. -- Anthony Michael has beaten the odds throughout his childhood. Now he faces monumental odds as he nears the end of high school.
"Life is more about taking the broad road than taking this narrow strip that this is all you're meant to be," says the senior at Mountain View High School. "You can be anything you want to be."
Michael is a high school senior and an All-State singer, but this is not the path he was expected to take. To understand truly who Anthony is, you must learn about who he was -- diagnosed with severe autism at an early age.

Sign Language Benefits Children with ASD

More than two decades ago, Marilyn Daniels began researching the benefits of sign language — not just for deaf people, but for hearing children and babies and those with learning disabilities and autism.
Several books and many seminars and classes for parents and educators later, the studies by Daniels and others have proven true. Today, ASL (American Sign Language) is taught in colleges, universities, preschool and elementary schools and is the third most used language in the United States.
“It's more popular than ever,” partly because learning the manual language creates anatomical changes in the brain, Daniels told a group of parents and teachers during an October presentation called “Sign to Speak” at the Spring Lake Library.

Special Ed Lawsuits Focusing on Autism

Came across this on Education Week's blog.

As the number of children diagnosed with autism has increased over the last few years, new research finds these students are disproportionately involved in lawsuits about whether they are getting a free appropriate public education in the least restrictive setting as required by federal law.
A new study by Lehigh University education and law professor Perry A. Zirkel, recently published in the Journal of Special Education Leadership explores this issue.
Professor Zirkel found that children with autism were involved in nearly a third of a comprehensive sample of published court decisions concerning the basic tenets of federal special education law. He also found that when comparing this litigation percentage with the percentage of students with autism from 1993 to 2006, the ratio was approximately 10 to 1. In other words, Zirkel writes, "special education court cases are over 10 times more likely to concern a child with autism than the proportion of these children in the special education population."

Documentary Eyes Vaccine-Autism Debate

If the title of your documentary is “The Greater Good,” shouldn’t you at least define what that is? Apparently not, as this emotionally manipulative, heavily partial look at the purported link between autism and childhood immunization would much rather wallow in the distress of specific families than engage with the needs of the population at large.
Plucky kids and plangent music abound. “Show us the science and give us the choice,” pleads the mother of Gabi Swank, a Kansas teenager whose health deteriorated after being vaccinated against human papillomavirus. But while the film acknowledges that science has so far been consistent in its refutation of a vaccine-autism link, it fails to point out that even were such a link proved definitively, all that matters is that its victims number significantly fewer than those of the diseases vaccinations are designed to prevent.

Blood Test Detects Down Syndrome

ST. LOUIS, Mo. -- A new blood test for pregnant women that can reliably detect Down syndrome in a fetus has raised concerns about the ethical implications of making that information safer and easier to obtain.
The test is more accurate than the blood and ultrasound screenings currently used to gauge the chance that a baby will be born with the syndrome. And it's safer than invasive tests of the amniotic fluid that carry a small risk of miscarriage.
But families and advocates worry that if the blood test becomes widely used, fewer children with Down syndrome will be born. Studies have shown that as many as nine out of 10 pregnancies with a Down syndrome diagnosis end in abortion, although doctors in St. Louis believe the figures here are significantly lower.

Editorial: Maryland's Bungling Created Bogus Case for Tax Increase

During this year's General Assembly session, proponents of a 3-percent increase in the tax on alcoholic beverages argued that more revenue was needed for - among other things - programs to help the developmentally disabled. It was a powerful argument; who wants to deny help to the disabled?
The increase was eventually signed into law, raising the tax to 9 percent. The revenue from this allocated to the Maryland Developmental Disabilities Administration was to start at $5 million in fiscal 2012 and go up to $15 million by fiscal 2014.
In light of this, it's confounding to hear officials of the agency admit that the DDA left $25 million in state funding unspent over the last two years, so that it had to be returned to the state's general fund. The DDA also had a $12 million surplus in its federal Medicaid match. In total, the agency had some $38 million available that it wasn't spending on more than 20,000 disabled Marylanders - not to mention the thousands on the agency's waiting list.

Study Eyes Drugs Prescribed to Foster Kids

Foster children are being prescribed cocktails of powerful antipsychosis drugs just as frequently as some of the most mentally disabled youngsters on Medicaid, a new study suggests.
The report, published Monday in the journal Pediatrics, is the first to investigate how often youngsters in foster care are given two antipsychotic drugs at once, the authors said. The drugs include Risperdal, Seroquel and Zyprexa — among other so-called major tranquilizers — which were developed for schizophrenia but are now used as all-purpose drugs for almost any psychiatric symptoms.
“The kids in foster care may come from bad homes, but they do not have the sort of complex medical issues that those in the disabled population do,” said Susan dosReis, an associate professor in the University of Maryland School of Pharmacy and the lead author.

Holiday Stress for Children with Autism

BROWNSVILLE, Texas -- To most parents, the holidays seemed to come earlier every year. This year was no exception. The children recognized things were already beginning to change once the pumpkins had come and gone. Haystacks and turkey pictures seemed to be appearing everywhere in town and in the school. Now, even Christmas trees could be seen several weeks ahead of the actual holiday. The holiday season was an exciting time for most children. However, this time of year could also bring about some unexpected behaviors, too.
As the Thanksgiving holiday approached, Joanie, one of the newer parents of a child with autism, told the teacher that her son Willy was not able to go to family gatherings. The teacher knew that Willy still had difficulty parting from his mother. Joanie told the teacher that her son did not like going to any home other than his own. Willy was a child that had difficulty communicating what he wanted. Usually, Willy was a sweet child. However, when he didn’t get his way, the boy would throw a tantrum. Fortunately, that behavior hadn’t been occurring in the classroom but it was happening at home.

Service Dog Survives Attack and Helps Child with Autism Get Through Tough Times

RACINE, Wis. -- A dog named Fonzie is helping make the life of a seven year old autistic boy much easier. Since Ryan from Racine was introduced to Fonzie, his mom says he's been calmer and more in touch with his emotions, but just getting Ryan set up with Fonzie the service dog was a challenge, after Fonzie and two other dogs were attacked in their training pen. Fonzie was the only survivor of the attacks, and Vicki Pagel, who trains the service dogs, nearly gave up. Now,
Fonzie helps guide Ryan through difficult situations - like grocery shopping with his mom.

Doctors Push Dads to Become Involved

As autism becomes the fastest-growing developmental disability in the United States, doctors in a new documentary express concerns that that fathers of these children with special needs are sometimes reluctant to face the issue. Our friend NY1's Cheryl Wills filed the second part of this report. Powerful stuff.

NEW YORK -- Emotions are raw and tears are flowing during a recent retreat for fathers of autistic children covered in a new documentary called "Autistic Like Me: A Father's Perspective."
The film is trying to help fathers open up and embrace their children with special needs, but it is no easy task.
"I thought I would never laugh again if he would never talk, if he would never become normal again," says Dr. Robert Naseef, a clinical psychologist and the father of an adult son with autism. "He never did talk again."

Opinion: Schools Need Evaluations

Guest column by Charles Seaton, Jr., a special education teacher at Sherwood Middle School in Memphis, from The Commercial Appeal.

Earlier this month I flew to Washington, D.C., to represent my Sherwood Middle School students at a hearing of a U.S. Senate committee. After years of delay, Congress is considering the reauthorization of the No Child Left Behind (NCLB) law; what the lawmakers decide could change my students' lives for better or worse.

I am a special education teacher in the Orange Mound community. This is a community that is over 88 percent African-American, with a median annual income of $21,802. Almost all of the students at Sherwood -- 97.6 percent -- receive free or reduced-price lunches. My students have a range of disabilities, from attention deficit disorder to autism, as well as many talents. (One student struggles to make friends, but can build amazing things with gears and wires.)

Horses Help Children with Connections

JASPER, Ala. -- 15 -year- old Sam Dyson, and this horse, Doc, have made a special connection.
"He's been my best friend ever since I met him."
Sam has autism. But his friend Doc doesn't seem to mind. Actually they've been teaching one another new things.
"Every animal has intelligence and I've been teaching him how to be sneaky so he can steal some food," says Sam Dyson.
He's one of about 40 students who's apart of a program called Equines Assisting Special Individuals. It's a therapeutic riding program for children with disablities.

As Families Struggled, Maryland Insisted It Had No Funds to Help

This is just outrageous and is truly hard to grasp. There just is no way to even begin to defend Maryland's actions. Am certain we'll be hearing more on this one.

ANNNAPOLIS, Md. -- For more than two years, Heidi Berlin and her husband, Dan, have fought state bureaucracy while seeking help for their developmentally disabled son.
And for more than two years, officials have told the Edgewater couple there isn't enough money in state coffers.
So the Berlins were shocked to learn this month that over the past two years the Developmental Disabilities Administration hadn't spent at least $34 million intended to help people with disabilities - and actually returned more than $25 million to the state's General Fund.
"We live in a very depressing world," Heidi Berlin said Thursday morning after a particularly long night caring for her 4-year-old son, Adam. "But this was a real slap in the face. ... They could have helped us, but they gave the money away."

Audit: Maryland Homes Lack Inspections

The Maryland agency in charge of inspecting health-care facilities failed to conduct required annual inspections at more than half of the state’s assisted-living homes, according to a state audit released last week.
The state Office of Legislative Audits found that the Office of Health Care Quality (OHCQ), which operates within the Department of Health and Mental Hygiene, did not perform the inspections at 53 percent of the facilities during fiscal 2010, and that the agency also failed that year to inspect more than 75 percent of care providers for the developmentally disabled.
The agency’s lackluster inspection record has been a problem for much of the past decade and state health officials have often blamed it on heavy workload and understaffing, legislative auditor Bruce A. Myers said.
“It’s always been a pretty large percent of these not getting looked at,” he said. “If you’re not going to get more resources, maybe you have to make some changes.”

Film Explores Struggle Accepting Autism

NEW YORK -- Charles Jones is telling the little family secret about autism that few people talk about openly: That many fathers of children with special needs have a tough time facing it.
“I felt a lot of guilt, shame, a lot of things—anger. Didn’t know who to be mad at. God, why did you do this to him? What did this little boy do?” says Jones.
Jones' son Charles Malik was diagnosed with autism as a toddler in 2006, and the filmmaker says he was overwhelmed and even embarrassed.
"There was a time I couldn’t talk about my son’s condition. When I told my dad, I begged him, please don’t tell anybody," says Jones.

Judge Backs Schools in Autism Case

LINCOLN, Neb. -- Lincoln Public Schools' education plan for a student with autism did not violate federal education law, despite a national expert's opinion that it would make the boy's behavior worse, a U.S. District Court judge ruled.
Chrissy and Matt McNair filed a lawsuit against LPS on behalf of their son Luke, alleging that LPS officials' insistence on using a "calm down room" for him did not provide him with a "free and appropriate education plan" as required by federal law.
The lawsuit argued the district should have relied on research and recommendations of a national expert from the Kennedy Krieger Institute, who found that using the calm down room actually made Luke more aggressive, significantly reducing his academic progress.

Autism and Apps: Letter to '60 Minutes'

From Huffington Post's Dr. Marion Blank, Director of a Light on Literacy Program at Columbia University.

Dear "60 Minutes":
As a psychologist with a long-term commitment to children with autism, I watched with great interest your recent segment "Apps for Autism." The encouraging picture you presented was welcome. Like many parents and many colleagues, I have seen the extraordinary array of skills that children on the spectrum can possess -- even when they are deemed to be "non-verbal" and severely limited in cognitive functioning.
At the same time, I was dismayed by serious failures and distortions in the material you presented.

Teens with Autism Face Barriers to Social Life Outside of School, Study Finds

ST. LOUIS, Mo. -- Hanging out with friends after school and on the weekends is a vital part of a teen’s social life. But for adolescents with autism spectrum disorders (ASDs), social activity outside of school is a rarity, finds a new study by Paul Shattuck, PhD, autism expert and assistant professor at the Brown School at Washington University in St. Louis.
“We looked at data from the National Longitudinal Transition Study 2 (NLTS2), a group of over 11,000 adolescents enrolled in special education,” he says. “Out of this group, teens with an ASD were significantly more likely never to see friends out of school (43.3 percent), never to get called by friends (54.4 percent), and never to be invited to social activities (50.4 percent) when compared with adolescents from all the other groups.”

Ohio Parents Who Bugged Daughter to Record Bullying Get Settlement

COLUMBUS, Ohio - The parents of a developmentally disabled Ohio teen who hid a recording device on the girl to prove she was being bullied by school officials received a $300,000 settlement from her district.
Kourtney Bacus and her boyfriend, who are raising the 14-year-old, say they bugged the girl for four days after their concerns about "mental and emotional abuse" by a teacher and aide were ignored by officials in the Miami Trace school district.

Possible Low Birth Weight-Autism Link

Low birth weight babies, infants born weighing between one and five pounds, can face a host of long-term health and developmental issues, including illness, infection and, according to a study from the School of Nursing, an increased risk for autism.
For 25 years, Jennifer Pinto-Martin, the Viola MacInnes/Independence Professor of Nursing at Penn Nursing, has been involved in a longitudinal study examining a cohort of infants with a low birth weight.
Pinto-Martin, also director of the Center for Autism and Developmental Disabilities Research and Epidemiology, says medical professionals knew very little in the 1980s about the long-term consequences of prematurity. To determine the lasting effects of being born at low birth weight, the cohort was assessed at ages 2, 6, 9, 16 and 21.

Cause of Deadly Blaze Under Investigation

MARINA, Calif. -- As hundreds bowed their heads for five developmentally disabled adults killed in a fire at their home-care facility, Marina Mayor Bruce Delgado addressed the mourners with a mix of sadness and second-guessing.

“So many of us… are wondering what we might be able to do in the future to make sure nothing like this happens again,” he said at the Nov. 10 service.

The cause of the Nov. 5 fire at Mt. Carmel Residential Care Facility remains unknown, according to officials with the Marina Police Department and the federal Bureau of Alcohol, Tobacco, Firearms and Explosives, who have teamed up with the county in the investigation. ATF spokesman John Lee says his department doesn’t expect new information to come to light for several weeks.

Quinn Works On Keeping Facilities Open

SPRINGFIELD, Ill. -- Gov. Pat Quinn said Wednesday that he's close to a deal with lawmakers that would keep seven state facilities open through June 30 and prevent 1,900 layoffs.
Quinn said his office has been working with legislative budget leaders on a plan that would stop the closings if lawmakers agree to uphold roughly $225 million in vetoes he made this summer. That money was set aside for things like school transportation and hospital bills, but would instead be shifted around to keep the facilities open through the end of the budget year.
"I am very optimistic," Quinn said. "I think we're very, very close and we've got to get this done right."

The 'Grand Experiment' in Social Services

From the Forst Scott Tribune in Kansas, a column by Tim Cunningham, executive director of Tri-Valley Developmental Services, which serves people with developmental disabilities in Allen, Bourbon, Neosho and Woodson counties.

The "Grand Experiment" in social services continues. This past Tuesday, Gov. Brownback announced sweeping reforms to the state's Medicaid system, that according to Lt. Gov. Jeff Colyer, will save the state $367 million over the next five years without cutting rates or services, this while at the same time improving the quality of services provided.
Their plan involves reshuffling departments, implementing a global waiver, expanding managed care to all Home and Community Based Services (HCBS) programs, emphasizing "health homes," intensive case management and improving efficiencies within departments.
While I applaud the governor in his attempt to get Medicaid costs under control and support a couple of the initiatives, some of the "new" initiatives already exist in our current system and have been very effective in controlling costs.

Researchers Seek to Reverse Rett Syndrome

Newly discovered details might advance efforts to reverse Rett syndrome, a rare condition that prevents an infant’s brain circuitry from developing, according to a presentation called out as a “Hot Topic” by the Society for Neuroscience at its annual meeting this week.

The study by researchers at the University of Alabama at Birmingham is part of mounting evidence that conditions from autism to Down syndrome need not last a lifetime.

“Our results suggest that the field is on the right track in early efforts to design a treatment for a devastating condition in Rett syndrome,” said Lucas Pozzo-Miller, Ph.D., professor of neurobiology at UAB and senior author of the paper. “They also provide the latest argument that correcting for the genetic miscues behind developmental disabilities may one day reverse their effect, even if treated in adulthood.”

Learning to Make College Work for Him

JACKSON HOLE, Wyo. -- Near the end of his morning French class at the University of Wyoming, Johnny Fifles glances at the clock.
“Four minutes,” he says, mechanically, loud enough for all to hear.
The students are filling in missing lyrics to a French song and practicing vocabulary. They raise their hands when they think they have the answers. “Amours.” “Petit.” “Vieux.”
The first-level class is conducted completely in French. Almost.
“Have you ever seen ‘Big Fish’?” Johnny blurts out, in English, to his teacher.
She hasn’t. The class chuckles. She calls on a student.
“One minute,” Johnny says aloud again, putting his stuff away with purpose. He can’t hold himself back in his public speaking class, either.
“I forgot what causes autism again,” he says to a classmate speaking about the benefits of organic produce.
Pesticides, she says.
“Well, I’ve got autism,” Johnny says.

'What Happens When They Become Adults?'

Like most teenagers, 18-year-old Ryan Wall enjoys playing sports, attending high school football games and dances, and socializing with friends. But as Ryan nears the end of his senior year at Naperville Central, his parents face an unsettling question … now what?
Theirs is not the usual anxiety of parents whose children must choose between college and work. Ryan is autistic. Although Naperville has a transitional program after high school to help prepare him for adulthood, those services will end the day before he turns 22.
For his mother and father, Jama and Bob Wall, thinking about the decisions that have to be made can be overwhelming. Where is he going to live and work? Who is going to take care of him when they are gone?

As Jama Wall said, “With more and more kids being diagnosed, what happens when they become adults?”

Does New Orleans Welcome Students with Disabilities?

NEW ORLEANS -- New Orleans has become the center of an education revolution, where more than 70 percent of students attend a charter school.
The number of students taught in traditional district-run schools is shrinking fast. That's because parents in post-Hurricane Katrina can pick and choose from a smorgasbord of schools with different approaches and cultures.
By many measures, this educational marketplace has improved student achievement. But as this experiment moves ahead, it's led to questions about whether the district is truly open to the most challenging students.

Families Fear Future as Kids Become Adults

BROOKLYN, N.Y. -- Sixteen weeks into her third pregnancy, Lourdes Rivera-Putz’s gynecologist alerted her to a situation that, she would soon learn, would change the course of her life.
After a prenatal examination, the gynecologist called her up and said there was an unusually high level of alpha-fetoprotein in her blood, and went on to explain the significance of the anomaly: it could be a harmless temporary surge that would subside later. Or it could also indicate an increased likelihood that the fetus had chromosomal problems, such as Down syndrome, which would limit the child’s physical and mental development.
The gynecologist recommended that Rivera-Putz go through amniocentesis, a test that would give a clearer indication of the presence of any health issues. But the invasive procedure, which involves inserting a needle into the uterus, has been known to lead to miscarriage or injury to the fetus in some cases. “I was determined to have this child no matter what,” Rivera-Putz says. So she declined the test, and waited for the birth of her child.
Five months later, she gave birth to a boy, whom she and her husband, Frank Putz, named Jonathan. The elevated alpha-fetoprotein was a harbinger – Jonathan was diagnosed with Down syndrome.

Maryland Developmental Disabilities Administration Probes Unspent Funds

ANNAPOLIS, Md. -- Officials at the Developmental Disabilities Administration have launched an investigation into why $25 million was left unspent by the agency, and the new executive director says he expects answers by the end of the year.
The agency serves 20,000 but has a waiting list of 5,000, and some could have benefited from the money, said Frank Kirkland, who took over the post in August, about the time when fiscal year-end auditing found that accounting errors had cost funding.

Saving for People with Disabilities May Soon Be Tax Free Without Risking Benefits

A bill that’s expected to be introduced in Congress Tuesday would give families a new way to save money for people with disabilities without jeopardizing government benefits.
The legislation known as the Achieving Better Life Experience Act, or ABLE Act, would create savings accounts that could be used to pay for education, health care, transportation, housing and other expenses for people with disabilities.

U.N. Eyes World Down Syndrome Day

The United Nations is on track to officially recognize an annual World Down Syndrome Day starting in 2012.
A resolution to establish the awareness day on March 21 of each year cleared a U.N. committee by consensus last week. Officials say it will be adopted by the international body’s General Assembly in December.
The United States is one of 28 countries supporting the effort, which is spearheaded by Brazil.
Supporters said the date — March 21, or 3/21 — is significant because Down syndrome occurs when a person has three copies of the 21st chromosome.

iPad Gives Children with Autism a Voice

POCATELLO, Idaho - Ryder McBride sat anxiously squeezing an empty 2-liter pop bottle as family and a few strangers filled his family's living room Wednesday morning.
He did not speak.
Pocatello's 8-year-old Ryder has a severe form of autism which makes verbal communication difficult, if not impossible. Help may be on the way. Gary James, originally from London, has a son he classifies as "nonverbal." He turned to the use of an Apple iPad to interact and help his 2-year-old son learn and communicate.
James presented the Mc-Bride family with a free iPad and a host of educational applications to better work with Ryder.
"He'll have a voice," James said.

Japan Taking Lessons from Ohio on Supporting People with Disabilities

ATHENS, Ohio -- Tucked away in the foothills of Southeast Ohio, Athens County's rural charm and Appalachian beauty may not lure an international tourist as the first stop on a journey to the United States. But for Akemi Moriizumi Harada of Japan, it was the primary destination.
Harada visited the region earlier this fall as part of the Exchange Program for Developmentally Disabled and Elderly Citizens (EPDDEC). According to the Ohio Chapter's mission statement, the program works to improve and advance services for these individuals by facilitating visits between Japan and Athens, and exposing participants to methods of care used in both cultures.
"We want to exchange ideas about supporting people with disabilities," said Arlene Sheak, Ohio Visit Coordinator for EPDDEC.

Editorial: Balancing Bottom Line and Risk

Kansas Gov. Sam Brownback’s administration is embarking on a fundamental restructuring of the state’s Medicaid program, which will place all recipients under privately run managed care programs.
The plan is an ambitious attempt to rein in costs and improve health outcomes without booting Kansans off eligibility rosters or reducing reimbursements to health care providers. Brownback and Lt. Gov. Jeff Colyer, the plan’s chief architect, deserve praise for seeking to avoid those draconian measures.
But the plan also places the state’s most fragile populations — the physically and developmentally disabled, mentally ill and impoverished elderly — into managed care plans run by companies with an eye on their bottom line.

P&G Hires Workers with Disabilities

AUDBURN, Maine -- Daniel Twitchell is a 21-year-old recent high school graduate who can’t vocalize more than 50 or so words. To express his needs, he uses signs, word boards and a tablet programmed with simple phrases and words. Despite this limitation, he landed a job at Procter & Gamble’s Tambrands factory in Auburn this summer, and since then, has become the face of P&G’s inclusive hiring initiative. When the company on Aug. 2 unveiled a new manufacturing station where Twitchell and other employees with disabilities work, it was Twitchell who cut the ribbon.
Asked whether he likes his job, Twitchell nods “yes” repeatedly, closing his eyes behind his glasses to reinforce the feeling. He has just wrapped up a six-hour shift as one of the company’s newest hires in a work-force development program that has been surprisingly successful in its three months of operation.

Man with Cerebral Palsy to Host TV Show

A man with cerebral palsy selected earlier this year to host his own travel show on Oprah Winfrey’s network will debut the new series in December.
Zach Anner, 26, was one of two winners of Winfrey’s “Your OWN Show” contest in February, landing a six-episode series on the OWN Network.
The show dubbed “Rollin’ with Zach” follows Anner as he tackles a new city during each of the half-hour episodes.

Study: Home Supports to Play Bigger Role

LOWELL, Ind. -- Denise Fields has been volunteering for Meals on Wheels for about a year now.
Fields, 49, lives in Lowell with her mother, Janice Fields. She goes with a driver once a month or so to help deliver the meals, bringing them to the door and sometimes chatting with the recipients.
“She loves it,” her mother said, adding Fields was ill recently and couldn’t help out, which broke her heart. “She enjoys being around elderly people.”
Fields has received services from The Arc Northwest Indiana since around 1980. Fields, who has Down syndrome, also works at The Arc’s sheltered workshop in Crown Point, putting pieces of wood together for craft kits, sorting shop rags or readying the cloths that come with eyeglasses.

Students Sharpen Life Skills in Kitchen

BRIGHTON, Mich. -- "Good job, chef girl."
Special-needs student Jack Krayer gave this compliment to Renee Chodkowski while munching on a bagel topped with cream cheese and vegetables at Hawkins Elementary School. Krayer and other students, some mentally and cognitively impaired, made their own bagel faces and corn dogs Nov. 4 during a cooking class put on by guest chef Renee Chodkowski, a Livingston County resident known as The Great Foodini.
The students were having fun, but educators said they also were learning something very important — basic life skills that could help them as they grow up.

Autism's Early Child

OK, promise the next post will be from the U.S. This was just an amazing story.

Michael Edge was one of the first children to be diagnosed as autistic, at a time when few in Britain had heard of the disorder. His mother was told to lock him away in an institution. The Observer's Christopher Stevens, whose own son is autistic, traces Michael's remarkable and poignant life

The Royals' Dark Secret

OK, I admit, I couldn't resist this gossipy tidbit. I usually pass on these, because I do tend to question their accuracy. But it is a slow news day . . . so we go to England.

Kate Middleton's marriage into the royal family created an extreme public curiosity and intrigue for the royals that's not seen such heights since Princess Diana joined this circle. The public's thirst for everything Kate Middleton and everything royal family unturned one stone lately that harbors a deep dark and sad secret about members of the royal family.
The Queen's two hidden cousins is a story put into a documentary that airs on TV this Thursday. These two sisters, who are first cousins of the Queen were born with developmental disabilities and hidden away in an asylum all their lives. One of the sisters died at age 66 in 1986, but the other sister is still alive.

Antidepressant-Autism Link Considered

Autism is on the rise, and no one has pinned down reasons, but researchers at the University of Mississippi Medical Center may have helped discover a cause: anti-depressants taken during pregnancy.
Their study, conducted with colleagues at the University of California, San Francisco, exposed rat pups to the drugs.
Published online last month by the Proceedings of the National Academy of Sciences (www.pnas.org), the findings showed that when developing rats were given the antidepressants, their behavior mimicked that of children diagnosed with autism spectrum disorders, including difficulty in communicating and relating to others.

Hidden Tax Deducations for Special Ed

More than six million children in the U.S. fall into the "special needs" category, and their ranks are expanding. The number of those affected by one developmental disability alone—autism—grew more than 70% between 2005 and 2010.
The tax code can help—if you know where to look.
There are numerous tax breaks for education, but the most important one for many special-needs students isn't an education break per se. Instead, it falls under the medical-expense category.

Ohio Teen with Special Needs Wears Wire to Tape Aide's Bullying in Classroom

Such a disturbing story. Got to give the mother credit for even thinking this way. Just so sad that she has to and that her daughter was being treated so poorly.

WASHINGTON COURTHOUSE, Ohio -- The mother of an Ohio teenager with special needs had her daughter wear a wire to secretly record a barrage of disparaging comments from a classroom aide, officials and the family's lawyer said.
On the four days of tapes, made last spring, the aide Kelly Chaffins is heard telling the 14-year-old girl that she is "dumb" and "a liar" and saying, "No wonder you don't have any friends."
"Don't you want to get rid of that belly?...Go for a walk. Do you know how to? You are just lazy and your family is lazy," she castigated the child, according to the complaint in a lawsuit filed by the girl's family.

Opinion: Are We Being Bankrupted By Our Humanity?

From Huffington Post's Larry Strauss.

Growing up in New York City nearly half a century ago, I watched my parents try to get help for my developmentally disabled brother. There was very little available and my parents were told, on multiple occasions, by education and psychiatric professionals, to dispose of their defective child in an institution. They refused, embarking instead on a long and expensive struggle.

Service Features Music, Message and Cake

NEW KINGSTON, Pa. -- Once a month, St. Stephen Evangelical Lutheran Church in New Kingstown conducts a worship service that is spiritual and simple, interactive and informal, friendly and fun.
Forget stiff hymns, stuffy sermons and sitting for hours on hard wooden pews.
Think instead about a 45-minute service with fun music, an easy-to-remember message and even a cake with candles to celebrate Pentecost.
Rejoicing Spirits, a ministry at St. Stephen, enriches the spiritual lives of people with developmental disabilities and welcomes their families and friends.

Illinois Lawmakers Reject Quinn's Plan

Illinois Gov. Pat Quinn is backing away from a plan that would shutter seven state facilities within months to save money as a bipartisan panel of lawmakers rejected the idea in an advisory vote Thursday.
Even before the Commission on Government Forecasting and Accountability's votes, Quinn's office had floated a slower, more orderly reduction of state-run services for the mentally ill and developmentally disabled that would keep seven targeted prisons and treatment centers open through this budget year.

Baltimore Survey Launched to Measure Bullying Impact on Children with Autism

Camping inside is suitable for Abby Mahoney and her younger brother Aidan.
The tent is a place for them to play.
In about 10 minutes, we watched as Abby created animation on Post-it notes. Her talent seems endless, but unfortunately it hasn't been celebrated among many of her peers.
Abby was diagnosed with Asperger’s Syndrome when she was 8 years old. She is on the high end of the autism spectrum, above her grade level in academics, but slower to develop social skills.
In fourth grade, she says bullying became the norm in her Baltimore County school.

Pets Put to Work in Vocational Program

SAYREVILLE, N.J. — It took a bit of coaxing from a school aide for Yasli "Cecilia" Martinez to pet an American bulldog named Harry who visited her Sayreville classroom.
But it was worth it when Martinez, 17, who is cognitively impaired and legally blind, touched the canine’s fur. The special-needs student relaxed and began to smile. The simple interaction was the first step in a vocational program to train older students with autism and multiple disabilities to care for animals.

Everything You Didn't Know About Autism

From Huffington Post's Ariane Zurcher.

Here are some things you will not find in your research on autism:
You will not learn how this diagnosis will affect your marriage or other members of your family. You will not be told how it may fundamentally alter your perceptions of what is "normal," how it may change your view of human beings, how it can force you to question small talk and why we behave the way we do, how it will transform your outlook on life, how it will change you, how your life and everything you assumed to be true, is no longer what you thought.

Agency Returns Unused Money to Maryland

ANNAPOLIS, Md. -- The beleaguered Developmental Disabilities Administration, with thousands on its waiting list for care, left $25 million in state funding unspent over the last two years, and wound up having to return the money to the state's general fund.
The agency also had a $12 million surplus in its federal Medicaid match, meaning there was a total $38 million left over.
The surpluses had apparently been going on for some time, leaving millions in the kitty that were supposed to be spent on people with some of the most severe physical and mental disabilities, many unable to care for themselves.

Teaching Children on Spectrum How to Play

The Roth family moved to Phoenix in Baltimore County a year ago to be closer to better services for their 7-year-old daughter, Avery, who is autistic.
By chance, their new neighbor, Katherine "Kay" Holman, was experienced in crafting inclusive programs for children with autism.
"We were still in the process of moving in when she introduced herself," Jenni Roth recalled. "I looked her up, and said, 'Oh my.' It worked out really well."
The families quickly formed a friendship that led to Holman's organizing a neighborhood group called PAW Pals. The play group is composed of a controlled number of kids — both typical-learning and autistic. During structured sessions, the youths learn how to play and socialize with one another in activities such as running a mock cafe or going on a pirate-themed treasure hunt. The group is named after the street, Princess Ann Way, where the participants live. Holman's next step is to introduce the program to schools.

Autism Hits Home Amid Funding Cuts

STATEN ISLAND, N.Y. -- Barbara and Billy D’Amora have three children, but their oldest son, Nicholas, 13, takes up a lot of their attention. Nick has autism.
“Everyone needs a piece of me,” Mrs. D’Amora said. “But Nick needs the most.”
The D’Amoras are one of the thousands of families affected by autism on Staten Island who depend on services funded through Medicaid and other programs to make life a little easier — and Nick is one of the many people with autism here who depend on those services to make his life brighter.
But as more and more children here and nationwide are diagnosed, wait lists for these services are only growing — and funding for programs like Medicaid are continually under threat of cuts or administrative changes.

Parents Provide Police with Autism Insight

GLENDALE, Calif. -- Don Short and Tamara Mark’s encounter with law enforcement hasn’t always been positive, especially when they have been trying to care for their two autistic sons.
During a family trip in Hawaii, Short had to restrain one of the couple’s son’s — 10-year-old Harry, who is nonverbal and prone to injuring himself — because he became extremely agitated at a Honolulu airport. But to the public, his actions looked like child abuse. He was reported to airport police.
As Short tried to calm his son, police warned him to let go of his son. He reluctantly complied. His son ended up biting an officer on the knee. And it wasn’t until after the scuffle that officers learned that Harry was autistic.
With similarly traumatic experiences behind them, the couple reached out to Glendale police on Tuesday to give officers insight into the challenges autistic children can pose in the field.

Researchers May Have Found Clue in Preventing Cerebral Palsy

ST. LOUIS, Mo. -- Five years ago, a group of researchers at Washington University Medical School discovered that elevated levels of an enzyme called Nmnat1 could prevent nerve damage. This got Philip Verghese, a postdoctoral research associate in Dr. David Holtzman's neurology lab thinking. Could Nmnat1 prevent damage in brain cells as well?
Verghese was thinking in particular of cerebral palsy. "Cerebral palsy is sometimes attributable to brain injury that stems from inadequate oxygen and blood flow to the brain before, during and soon after birth," says Verghese. If this goes on long enough, the brain cells start to die through a process called necrosis, where they swell and explode. The damage is permanent, and it can affect movement, vision, cogitation and communication. So far, there is no cure. But what if doctors could prevent the damage from the very beginning?

Finding a Job the Answer to His Prayers

JOPLIN, Mo. — For Matthew Crews, a 23-year-old with autism, his full-time job at Signature Granite in Neosho has provided not only a sense of freedom but also the answer to a prayer.
“I thank the Lord for providing this for me,” he said. “I’ve been praying every day. . . . It’s a blessing to have the job. I don’t think I’m here by chance.”

California Cuts Threaten Day Programs

SAN JOSE, Calif. -- State budget cuts that go into effect Dec. 1 will eliminate funding for day programs for thousands of seniors and the disabled, creating angst among relatives who say their lives will be turned upside down.
Some fear they will have to send their elders to institutions. Others worry they will need to quit jobs to care for them.
Unless a pending lawsuit blocks the plan, the state will halt $169 million in annual Medi-Cal funding for 35,000 people in 287 adult day health care programs throughout California, jeopardizing many of the programs.

Tips to Tame Stimulation of Holiday Season

The parents of children with autism often become accustomed to dealing with the effects of their child’s overstimulation. Yet as we enter the oft-frenzied period of the holidays, many parents will begin to sympathize and wonder if their child fits on the autism spectrum.
Considering that 7.4 percent of children between the ages of 3 and 7 have been diagnosed at some point with Attention Deficit Hyperactivity Disorder, and another 1 in 110 children have an Autism Spectrum Disorder, there are a lot of children out there who struggle with high-sensitivity and sensory-processing challenges. Under the right circumstances, just about any child can be overstimulated.