Developmental Disabilities in the News

Disability Rights: Sheltered Workshops Are Today’s Institutions

2012-01-27T16:09:00.000-05:00

The Oregon chapter of the Cerebral Palsy Association and eight individuals with intellectual and developmental disabilities have filed a class-action lawsuit charging that thousands of Oregonians with disabilities are stuck in dead-end “work-activity programs” where they typically make less than the minimum wage. Placement in such programs, in sheltered workshops, is in violation of protections against discrimination under the federal Americans with Disabilities Act and the Rehabilitation Act.

Work-activity programs where people perform simple packaging and assembly tasks in locations segregated from the general public have become the end point for too many individuals with disabilities, rather than serving as transitional programs that would ultimately lead to workers being integrated into the mainstream community.

Delegate: Strip 'Mental Retardation' From State Code

2012-01-27T15:27:00.002-05:00

RICHMOND, Va. (WTVR) - At the General Assembly one delegate is pushing for a change in quality of life, by trying to strike the words “mental retardation” from the state code. Republican Delegate T. Scott Garrett is looking to mirror a federal law to eliminate the term he considers insulting, with a less offensive term.
“Everywhere there is the word 'mental retardation,' it changes that to 'intellectual disability,'" said Garrett.
In 2010, President Barack Obama signed legislation requiring the government make the changes on the federal level. And here in Virginia, Garrett is sponsoring a bill to do the same here. Under the law, "mental retardation" would be stripped from the state codes.
The proposed bill comes on the heels of a recent rally, nearly two weeks ago when hundreds gathered at the Virginia Capitol in an effort to boost funding and improve mental health services for Virginians.

California Assembly Bills Expand Health Coverage

2012-01-27T15:15:00.000-05:00

The state Assembly on Thursday passed a set of bills intended to broaden the mental health and health care services covered by private insurance plans.
Lawmakers approved AB154, which would require insurers to cover the diagnosis and treatment of mental illnesses, and AB171 for coverage of developmental disorders such as autism. They also approved legislation to cover oral chemotherapy treatments and mammograms regardless of age.
Supporters say many people with mental illness and substance abuse problems are unable to obtain treatment and end up in public health care programs, emergency rooms and state and county jails.

Mid-Michigan Industries Partners with Students to Benefit Developmentally Disabled Residents

2012-01-27T10:42:00.001-05:00

Thirty-two year old Heather Naessens bounced her knees as she adjusted herself into the warrior pose.
“Shake it, but don’t break it!” the Mount Pleasant resident joked to her fellow developmentally disabled participants as a chuckle broke out in the room.
This was Naessens’ second time participating in Mid-Michigan Industries’ weekly yoga class this semester, led by Central Michigan University student volunteers.
“I am volunteering here as part of the 180 hours required for therapeutic recreation majors,” said Bay City junior Maeling Groya. The yoga facilitator said it’s rewarding to give people with developmental disabilities the opportunity to engage in yoga.

Virginia Reaches Settlement with Dept. of Justice on Care for Individuals with Disabilities

2012-01-26T14:46:00.000-05:00

RICHMOND, Va. -- Virginia will close four state institutions for the developmentally disabled and move thousands of people to their own homes, their family’s houses or group homes as part of a massive settlement announced Thursday with the U.S. Justice Department.
The agreement follows a scathing federal report of the training centers, which found the state harmed residents by keeping them in large institutions instead of providing smaller, community-based homes.

Oregon Sued for Denying Access to Mainstream

2012-01-26T08:35:00.001-05:00

PORTLAND, Ore. -- A federal class action claims Oregon is unnecessarily, and illegally, segregating "thousands" of people with developmental disabilities in "sheltered workshops," and denying them "virtually all contact with non-disabled persons," in the state's employment service system.
Lead plaintiff Paula Lane claims: "Thousands of other similarly situated individuals in the State of Oregon also are unnecessarily segregated because of DHS's [the Department of Human Services] over-reliance on sheltered workshops, and its failure to timely develop and adequately fund integrated employment services, including supported employment programs.

Education, Employment and Adults with Autism

2012-01-26T08:30:00.000-05:00

LOS ANGELES -- 1.5 million people in the United States have autism. Los Angeles County is expecting a dramatic increase in the number of adults with autism in the next five years. One local group is looking for ways to help these adults find housing, jobs, even careers.

Tom Iland just moved in with his girlfriend and passed the test to become a certified public accountant.
"Seeing things through, that's what makes things happen," said Tom.

Pounding Pavement Calms Autistic Runner

2012-01-26T08:22:00.000-05:00

MOUNT DORA, Fla. — When Kyle Krekeler showed up at the Mount Dora Christian Home and Bible School track in July to join a local running group, trainer Vickie Steuben encountered a problem.
The 22-year-old Krekeler, who is autistic, would smell her hand and try to put some of her fingers in his mouth.

"I would get really freaked out," said Steuben, who has been coaching Krekeler since he joined. "But he doesn't do that anymore."
Running keeps Krekeler on an even keel, said his grandmother and legal guardian, Anne Osborne. He smiles when he starts to run. He is healthy and fit. And though he has a long way to go, experts say there is evidence that moderate to vigorous exercise can help people with autism. The benefits have been explored in studies examining the results of swimming, treadmill walking and even horse riding, among other aerobic activities.

Teen with Autism Swims His Way to Success

2012-01-25T08:27:00.001-05:00

FOND DU LAC, Wis. -- When Hunter Develice wanted to join the Fond du Lac High School swim team, his father was told that perhaps the family should consider Special Olympics instead.
"A school official told me maybe it wasn't the right spot for Hunter, but he proved them wrong," Chris Develice said of his autistic son.
A powerhouse swimmer, the 17-year old Fondy High junior recently swam the 400-meter freestyle race in "letter" time in a dual meet at Berlin. He not only swam fast enough to earn a varsity letter, he won the race.

Autism Gains Visibility on TV, in Movies

2012-01-25T08:22:00.000-05:00

Premiering Wednesday night on Fox TV is “Touch,’’ a drama centered on a mute, emotionally withdrawn 10-year-old named Jake who possesses genius-level math skills. Just released, meanwhile, is the film “Extremely Loud and Incredibly Close,’’ whose 10-year protagonist, Oskar Schell, exhibits mildly autistic traits. It earned an Oscar nomination for best picture yesterday.
Even as the American Psychiatric Association announced last week that it may restrict its definition of autism, a wave of movies, television dramas, and best-selling books is drawing pop culture attention to the mannerisms and behavior associated with the disorder. Whether the effect will prove beneficial - or trivializing and exploitative - is a matter of some discussion.

Taking Care of Adults with Disabilities

2012-01-24T16:49:00.002-05:00

FLAGSTAFF, Ariz. -- Pearlie Hatcher calls her son, Jeffrey, “Mama’s baby.”
Jeffrey replies that he is a man. Physically, he is 45, and thegray hair creeping around his temples and the lines around hismerry eyes show it.

Developmentally, he is a child. He always has been. He alwayswill be. The Hatcher family learned when their youngest was aninfant that he had Down syndrome.
The way Pearlie explained it to his siblings, he would “always be like a baby.”

New Research Gets Look at Brain's Wiring

2012-01-24T09:23:00.001-05:00

Researchers for the first time are documenting the basic wiring of the brain, the complex relationships among billions of neurons that are responsible for reason, memory and emotion. The work eventually could lead to better understanding of schizophrenia, autism, multiple sclerosis and other disorders.

A look at the hidden anatomy of brain wiring.

New techniques, including advances in brain scans, are helping to reveal the hidden anatomy of brain wiring and giving scientists a new understanding of how thoughts, memories and emotions are formed. WSJ's Robert Lee Hotz reports.

"It may be the first new perspective on neuroanatomy in 100 years," said Bruce Rosen, director of the Martinos Center for Biomedical Imaging at Massachusetts General Hospital. "There may be some real surprises."

Perspective: Redefining Autism Comes at a Cost

2012-01-24T09:11:00.002-05:00

Another opinion. This one by Ilyse Levine-Kanji, a school committee member in Westborough, Mass. and a former employment discrimination lawyer. Her son, Sam, has autism.

Ilyse Levine-Kanji and her son, Sam

As a school committee member, I recognize how costly services for autism are, and I understand the current urge to more narrowly define autism. As a parent of a child with autism, I also know that the costly supports my son Sam has received – from his school, through our insurance company, and from our own pocket – have helped him immeasurably .
If you saw Sam, now 13, on the street, you would know immediately that he is unlike most children. Sam makes little eye contact; can “flap” his arms or make other disconcerting movements; speaks in an unnaturally loud, high-pitched sing-song voice; and has frequent loud bursts of laughter about things evident only to him. Throughout his school day, Sam requires the constant presence of a trained adult to painstakingly teach him information, from academics to reading social cues to following societal norms of behavior. Sam’s need for constant supervision continues once he gets home from school.

Footage of Bullying Posted on Facebook

2012-01-24T09:01:00.000-05:00

Whether you're a fan of Facebook or not, clearly this is a sad commentary on society. How could anyone think about capturing video when someone is getting bullied?? And posting it on Facebook? Well, I'll let you decide.

The horrified parents of an autistic sixth grader watched video of their son being pummeled by a peer after another student posted the disturbing footage on Facebook.
The 11-year-old boy, Kaleb Kula, says he’s been bullied for years at Elkton Middle School in Maryland, local station WMAR-TV reported.
The video, recorded on a student’s cell phone, shows Kula and other students standing near a school bus stop.

Opinion: Why it Makes Sense to Redefine Autism

2012-01-24T08:50:00.000-05:00

Jennifer A. Pinto-Martin is the Viola MacInnes/Independence professor and chair of Biobehavioral Health Sciences at the University of Pennsylvania's School of Nursing. She is also the director of the university's Center for Autism and Developmental Disabilities Research and Epidemiology.

"Will my child still qualify for a diagnosis of autism?" This is the question on the minds of many parents with children who have autism. The short answer is: Most likely, yes.
As an expert panel considers changing the definition of autism in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, parents are expressing concerns about what this will mean. The manual is the standard reference for the diagnosis of mental disorders and has an important influence on insurance coverage, access to educational support and therapeutic services, as well as research in the medical community.
But rather than debating whether the change is warranted or wise, we should focus on the effects.

N.J. Earmarks Funds for Autism Clinical Studies

2012-01-23T08:37:00.001-05:00

The prevalence of autism in New Jersey has spurred extensive study, with biomedical researchers looking at everything from behavioral therapy to genetics to discover autism's causes.
Now the state intends to expand these efforts in research and treatment by supporting the scientists financially -- with $8 million in grants over five years -- and coordinating individual efforts by sharing results in a central office.

Anxiety, Other Disorders, Common in Autism

2012-01-23T08:33:00.000-05:00

NEW YORK -- Autism tends to go hand in hand with a variety of other mental and behavioral conditions in kids, suggests a new study that highlights the fuzzy nature of autism diagnoses themselves.
Researchers said that other disorders that often go along with autism -- such as attention-deficit/hyperactivity disorder (ADHD) or learning disabilities -- may complicate the diagnosis, or slow down any improvement in kids who do get diagnosed and treated early.

Where to Draw Line Between Social Media Responsibility and Anti-Vaccine Activists

2012-01-23T08:30:00.002-05:00

A new article in the medical journal Vaccine sheds light on the online practices of one such group—the global anti-vaccination movement, which is a loose coalition of rogue scientists, journalists, parents, and celebrities, who think that vaccines cause disorders like autism — a claim that has been thoroughly discredited by modern science.

While the anti-vaccination movement itself is not new—religious concerns about vaccination date back to the early 18^th century—the ease of self-publishing and search afforded by the Internet along with a growing skeptical stance towards scientific expertise—has given the anti-vaccination movement a significant boost.

When Teens with Autism Want to Drive

2012-01-22T16:59:00.000-05:00

COLUMBUS, Ohio -- For parents of teens with an autismdisorder, life is interesting enough. It gets more so when their sons and daughters, sometimesbrilliant but also quirky, are old enough to drive.

'Do we do it, do we not do it? Will it work, will it not work? You ask yourself all the time,'said Beth Luzader, whose son turns 16 next month.
Before she can explain further, Garrick Hatcher interrupts his mom to declare, “I’m not a baddriver!”

Siblings Take On Lifetime Commitment

2012-01-22T09:10:00.000-05:00

Katie Ketter loves to joke around at least a couple times a week with her big sister, Ashley Baldwin.
“Recently we started swimming together at the Y,” Baldwin, 27, of Appleton, said of Ketter, 24. “Katie will stop over on the weekends and I help her print out her pictures; she just got a new camera.”
At the end of November, Ketter, who is cognitively disabled, also began a new stage of life — she’s moving out of her parent’s Appleton home and into a privately run adult family home in Darboy.

Autism Debate Worries Some Families

2012-01-21T09:26:00.000-05:00

A debate among medical professionals over how to define autism has spilled over into the public domain, stirring anger and fear among many parents and advocates of those with the neurological disorder, even as some argue that the diagnosis has been too loosely applied.
A study reported on Thursday found that proposed revisions to the American Psychiatric Association’s definition would exclude about three-quarters of those now diagnosed with milder forms of autism called Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. These are people who have difficulties with social interaction but do not share the most severe impairments of children with classic autism.

Budget Ups Funds for Md. Disabilities Agency

2012-01-21T09:22:00.000-05:00

Hope this passes, because what happened before should never happen again. Just horrific.

ANNAPOLIS, Md. -- After a rocky six months for the Developmental Disabilities Administration, Gov. Martin O’Malley’s fiscal year 2013 budget proposal increases funding by about $31 million and creates a new fund so unspent money will stay in the agency.
Health Secretary Joshua Sharfstein and Developmental Disabilities Administration Director Thomas Frank Kirkland sent a letter detailing the agency’s budget initiatives to all members of the General Assembly on Wednesday morning, soon after O’Malley shared his budget proposal.

Illinois Governor to Close 2 State Institutions

2012-01-21T09:17:00.002-05:00

SPRINGFIELD, Ill. -- Gov. Pat Quinn announced Thursday that he plans to close a Tinley Park mental hospital and a Jacksonville center for people with developmental disabilities as he ramps up efforts to move people out of state institutions and into group homes or other kinds of community care.
As the push continues, Quinn hopes to move 600 people out of institutions over the next 2½ years. That would eliminate the need for up to four hospitals and developmental centers, aides said.
Quinn's office emphasized that the goal is to improve quality of life for people who depend on the state for care. But doing away with costly institutions should also save money. They predicted closing facilities in Jacksonville and Tinley Park, which together employ about 550 people, would save nearly $20 million.

Artists with Disabilities Raise Awareness

2012-01-20T22:01:00.000-05:00

The work of eight special artists was unveiled Wednesday at the state Office of People With Developmental Disabilities, or OPWDD. The mural was five weeks in the making, a way for people like Lisa Kasper to raise awareness for people with special needs.

"I want other people to see that because I am visually impaired that I can still do art, and I can share my art with other people," says Kasper.The OPWDD program works with residents at the Institute for Community Living, an organization that provides housing and services for developmentally disabled people.

Federal Judge Blocks In-Home Service Cut

2012-01-20T09:31:00.000-05:00

SACRAMENTO, Calif. -- A federal judge on Thursday continued to block the state from reducing in-home care to low-income disabled and elderly residents, a budget cut pursued last year by California Gov. Jerry Brown and lawmakers.
The reduction would have slashed one-fifth of service hours for In-Home Supportive Services recipients to save the state $100 million over the next six months.

From Blog Posts to Bills, Student Advocates for Individuals with Autism

2012-01-20T08:21:00.000-05:00

WASHINGTON, D.C. -- For better or for worse, Lydia Brown's identity has been shaped in large part by her autism.
"Autism affects every aspect of my life," she said. "I would completely not be me if I were not autistic."
Drawing on her experiences, Brown (COL '15) wrote and submitted two bills, one before the House of Representatives and one in the Senate in Massachusetts, proposing a mandatory training program about autism for law enforcement and correction officers in the state. The training would focus on how to recognize and communicate with autistic people in high-tension situations.

Study: Low Birth Weight Predictor of Autism

2012-01-20T08:15:00.000-05:00

EVANSTON, Ill. -- Low birth weight is an important environmental factor contributing to the risk of autism spectrum disorder, U.S. researchers say.
"Our study of discordant twins -- twin pairs in which only one twin was affected by autism spectrum disorder -- found birth weight to be a very strong predictor of autism spectrum disorder," lead author Molly Losh of Northwestern University said in a statement.

Bill Preventing Hospital Discrimation Against Disabled to Be Proposed

2012-01-19T19:41:00.002-05:00

TRENTON, N.J. -- Senate President Steve Sweeney (D-Gloucester) Thursday announced that he will soon introduce legislation that would ban hospitals in New Jersey from declining to perform an organ transplant on someone simply because they have a developmental disability.
The legislation comes in the wake of an incident at Children’s Hospital of Philadelphia (CHOP) where a Camden County family was allegedly told that their 3-year-old daughter would not be eligible for a kidney transplant because she is “mentally retarded.”

French Film Takes Issue with the Psychoanalytical Approach to Autism

2012-01-19T19:34:00.002-05:00

PARIS — “Le Mur,” or “The Wall,” a small documentary film about autism released online last year, might normally not have attracted much attention.
But an effort by French psychoanalysts to keep it from public eyes has helped to make it into a minor cause and shone a spotlight on the way children in France are treated for mental health problems.

FDNY Instructs on Rescuing Autistic Children

2012-01-19T09:52:00.000-05:00

When a building is burning and firefighters are focused on saving lives and the difference between life and death is a matter of seconds, they can be stopped in their tracks by an autistic child.

"A lot of the time, people with autism don't understand what's going on so they don't know what's expected of them," said Capt. Bill Cannata, an autism first responder educator. "They're going to do opposite of what a first responder would think."

It's that kind of situation that inspired a new autism seminar at the FDNY training academy Wednesday that dealt with what to do when handling an autistic child at an emergency.

New Definition of Autism May Exclude Many

2012-01-18T19:32:00.000-05:00

Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and may make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.

The definition is under review by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders. The D.S.M, as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions.

Supreme Court Holds Fate of Medicaid

2012-01-18T12:41:00.002-05:00

WASHINGTON, D.C. -- Two cases before the Supreme Court have the potential to effectively do what Republican lawmakers have tried and failed: transform Medicaid into a block grant program for states with few enforceable federal rules about how they provide health coverage for the poor.
That outcome may not be the most likely scenario. But legal experts say no one can predict what the high court will do — particularly because many were surprised that the Supreme Court agreed to consider the Medicaid portion of the big multistate challenge to President Barack Obama’s health reform law in the first place.

Parents Say Doctor Denied Daughter Transplant Due to Developmental Disability

2012-01-18T08:47:00.001-05:00

PHILADELPHIA — The parents of a 3-year-old girl say she's being denied a kidney transplant because of her mental disabilities, but experts caution the situation may be much more complex.
Chrissy Rivera, who lives in New Jersey, last week posted a blog entry that described an encounter she claimed happened at The Children's Hospital of Philadelphia. She said she was there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities.
Rivera wrote that a doctor, whom she did not name, told her and her husband, Joe Rivera, that Amelia wouldn't be eligible for a transplant because of her quality of life and her mental condition.
"I put my hand up. 'Stop talking for a minute. Did you just say that Amelia shouldn't have the transplant done because she is mentally retarded. I am confused. Did you really just say that?'" she wrote. "I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded."

When Workers with Autism Are Perfect Fit

2012-01-18T08:28:00.003-05:00

NAPERVILLE, Ill. -- Finding steady work in this economy isn’t easy. The challenge is magnified for individuals with disabilities such as autism, who often have difficulty with social interaction.
Experts and parents are trying to change that by helping employers understand what this population has to offer.
“There’s an untapped pool of potential workers available in the special needs community that can really do a great job for many employers,” said Naperville resident Karen Thomas, whose 19-year-old son, Eric, is autistic.

California Clinic Fills Gap in Dental Care

2012-01-18T08:21:00.003-05:00

For most adults, a cavity calls for a quick prick of Novocain and a 20-minute filling. But for 40-year-old Tina Lumbley of Moreno Valley, Calif., the routine procedure was a day-long ordeal.
Lumbley has autism, a developmental disorder that makes the sounds, smells, tastes and bright lights of the dentist's office overwhelming.

Editorial: Placing People Ahead of Finances

2012-01-18T08:17:00.002-05:00

SPRINGFIELD, Ill. -- We are firmly on record advocating that Illinois move away from its reliance on large institutions to house the developmentally disabled.
Housing people with developmental disabilities in large facilities is an antiquated, expensive and, most importantly, ineffective way of allowing the disabled to live the fullest and most productive lives possible. By and large, advocates for the developmentally disabled favor providing residential care in residential settings — group homes with six or fewer residents supervised by a properly trained staff.

Maryland Disability Administration Fixing Outdated Accounting Method

2012-01-18T08:12:00.003-05:00

ANNAPOLIS, Md. -- A flawed, outdated and ineffective method of accounting is the reason why the Developmental Disabilities Administration discovered a startling $33 million in unspent funds, and Health and Mental Hygiene Secretary Joshua Sharfstein said that the agency is committed to fixing those problems.
Testifying Tuesday afternoon before the House Appropriations Committee, Sharfstein, whose department oversees the Developmental Disabilities Administration, along with several department officials, assured legislators that they are working hard internally to correct the problems.

DOJ Report: Thousands Unjustly Institutionalized and Isolated in Mississippi

2012-01-17T12:36:00.003-05:00

ELLISVILLE, Miss. — A federal investigation of the state’s mental health system may lead to changes in operations at Ellisville State School and other state-operated regional facilities providing comprehensive services to individuals with intellectual and developmental disabilities.
In mid-December, the U. S. Department of Justice (DOJ) sent its investigation findings to former Gov. Haley Barbour which pointed out problems in the state’s mental health system and what steps need to be made to correct them. According to DOJ findings, the mental health system violates the Americans with Disabilities Act by unnecessarily institutionalizing thousands of Mississippians with disabilities or mental illness.
“The Justice Department basically wants us to offer more community based services,” said ESS Director Renee Brett. “They want individuals at Ellisville State School and other mental health facilities across the state to be able to associate more with non-disabled people.”

Inspirational Model with Down Syndrome

2012-01-17T08:57:00.003-05:00

NEW YORK, N.Y. -- Ryan Langston has everything a casting director would want in a child model: charisma, a hip haircut and a knockout smile. This 6-year-old also has Down syndrome -- and it is that fact that has daytime talk shows, international newspapers and news networks all wanting to tell Ryan's story.
His appearance in a Nordstrom catalog this summer, and a Target ad this month created the kind of buzz marketing directors dream of -- because of what the ads do not do. They don't emphasize or point out that Ryan has special needs. He's just a good looking kid in an ad, appearing alongside other good looking kids about the same age.

Va. Begins Moving People From Centers

2012-01-17T08:39:00.003-05:00

CHESAPEAKE, Va. -- Within the next few months, Sandra Arnold will move to a new home.
The 57-year-old woman has lived in state institutions for the mentally disabled since she was 5, and at Southeastern Virginia Training Center in Chesapeake since it opened nearly four decades ago.
She's now part of a wave of intellectually disabled residents who are moving out of the state's five training centers in an unprecedented downsizing effort, which could eventually lead to closing some entirely.

Opinion: Reconsider Managed Care Reform

2012-01-17T08:22:00.003-05:00

WICHITA, Kan. -- The Brownback administration’s sweeping overhaul of Medicaid into a privately run managed-care system called KanCare mustn’t sweep individuals with developmental disabilities over the edge. As it is, there is a good argument for exempting the vulnerable population from such a sea change.
A packed weekend meeting in Wichita demonstrated how unsettling the governor’s plan is proving for the developmental disability community, as Department of Aging Secretary Shawn Sullivan was questioned about why the reform was needed and how it would affect loved ones.
Sullivan argues that care coordination is justified because many who are developmentally disabled suffer from medical conditions such as diabetes and high cholesterol, and have problems with mental illness and substance abuse. He makes a good point.

Read more here: http://www.kansas.com/2012/01/17/2177892/medicaid-plan-unsettling-for-developmentally.html#storylink=cpy

How Do You Explain Autism to Your Son?

2012-01-17T08:12:00.002-05:00

From Patch's Yuji Fukunaga, a Highland Park, Ill., resident and the father of a dynamic seven-year-old boy who has autism.

The book displayed caught my attention. My son and I were in the children’s section of the public library, just prior to the start of Hanukkah.
Nathan Blows Out the Hanukkah Candles was an amusing title – one that I could relate to. At past Hanukkahs, Kai has wanted to blow out the candles on our menorah.
I grabbed the book and quickly paged through it. It looked like a fun story. At a minimum, it was timely, and I thought that perhaps it would help my son learn a little more about the holiday we would soon be celebrating.
So, I checked the book out and brought it home.
It was only after I began reading it with Kai at bedtime one night that I realized that the title character was a boy with autism. I had unwittingly chosen a book that might spur our first discussion about autism with our son.

Metronome Device Aids Brain Processing

2012-01-17T08:06:00.003-05:00

WILMINGTON, Del. -- Nicole Dye-Anderson credits rollerskating lessons with alleviating her daughter's ADHD symptoms.
It was Jenna's skating coach who noticed the 11-year-old seemed to prefer her left side over her right. She suggested physical therapy to improve Jenna's balance.
That's how Jenna wound up at Nemours/Alfred I. duPont Hospital for Children using the Interactive Metronome, a computer-based rhythm program that uses simultaneous sound and images to help with the brain's processing, specifically when it comes to attention, motor planning and sequencing.

Study Finds Babies Learn to Talk By Reading Lips; Could Offer Clues to Autism

2012-01-16T18:52:00.003-05:00

For years, the conventional wisdom was that babies learned how to talk by listening to their parents. But a new study in the Proceedings of the National Academy of Sciences shows that our little angels are using more than their ears to acquire language. They’re using their eyes, too, and are actually pretty good lip readers.
The finding could lead to earlier diagnosis and intervention for autism spectrum disorders, estimated, on average, to affect 1 in 110 children in the United States alone.
In the study, researchers from Florida Atlantic University tested groups of infants, ranging from four to 12 months of age and a group of adults for comparison.

The Joys of Independence

2012-01-16T12:17:00.002-05:00

HANOVER, N.J. — Packed to the refrigerator are pictures of his family smiling brightly. On a wall leading from the living room to the bedroom is a plaque from Employment Horizon proclaiming Stephen Somich the "most improved worker."
These trappings of home sit side by side with the generic playthings that are near necessities for men of a certain age — a comfortable chair in front of a television hooked up to a PlayStation.
Somich, 30, has been living in this roomy, one-bedroom apartment in Hanover since June. His very own apartment.

Syracuse University Honors Deceased Doctorial Student as King Unsung Hero

2012-01-16T12:09:00.005-05:00

SYRACUSE, N.Y. -- Cheryl Spear passed away before she learned she’d won a Syracuse University Martin Luther King Jr. Unsung Hero award, but her friends, family and colleagues said she’d have been overjoyed at the honor.
“She advocated for people with visual impairment and for people with disabilities in general,” said Kinnari Desai, an SU grad student from India who is visually impaired. Spear, who died in December, took Desai under her wing when she arrived in Syracuse in 2010.
“She helped create a path for others, and showed many of us how to cope,” said Desai, one of a group of students, friends and colleagues who nominated Spear for the award.

Life with Williams Syndrome

2012-01-15T07:39:00.004-05:00

COLLEGEVILLE, Pa. -- Most parents have to teach their kids how to properly greet people — to stand up before saying hello to someone who’s entered the room, to shake hands with the new neighbor, to hug relatives who’ve come to visit.
Children with Williams syndrome will perform these friendly acts naturally, and willingly, while making each person they’re greeting feel like the man of the hour.

Losing a Job and Self-Esteem

2012-01-14T21:58:00.000-05:00

MARENGO, Ill. -- Always clean and perfectly pressed, Eddie Mrkvicka’s McDonald’s uniform gave him the same sense of pride that a sailor might feel in his dress blues.
The 38-year-old from Marengo more recently was employed at a rehab facility in Woodstock, but like many in the rocky economy of recent years, he lost his job to cutbacks.
Mrkvicka, however, is not like the majority of unemployed U.S. workers. He has a controlled seizure disorder, suffers from adult attention deficit and hyperactivity disorder, and has learning disabilities and Asperger syndrome, a high-functioning form of autism that affects a person’s social interaction skills.

Tim's Place: A Dream Followed

2012-01-14T18:11:00.003-05:00

ALBUQUERQUE -- Running a restaurant isn't easy, but Tim Harris has made it work.
Along the way he became perhaps the only person with Down syndrome in the U.S. who owns and operates his own place.
“This trophy right here, I got student of the year,” Harris, 25, said as he gave KRQE News 13 a tour of Tim's Place.
Harris has accomplished a lot.
“I won homecoming king from the highest margin of votes in school history,” said Harris, a 2004 graduate of Eldorado High School. He went on to get a degree from Eastern New Mexico University-Roswell.

Changes to Medicaid Sowing Uncertainty

2012-01-14T11:20:00.002-05:00

WICHITA, Kansas -- Wichitan Jennifer Norgren has sparkling brown eyes and smiles a lot. She’s ornery and, well, boy crazy.
She’s like many other young women.
Jennifer is also developmentally disabled and lives at home with her parents. She was born with Down syndrome 22 years ago. She’s blind, uses a wheelchair and has hydrocephalus, or water on the brain.
Her developmental level ranges from 24 to 36 months, depending on the area being measured. She’s also a cancer survivor.
“For as much as she’s gone through, she has a really positive attitude,” said her mother, Terri Norgren. “She is one of the happiest persons I’ve ever met. Always has a smile on her face. She does like boys. She had a date to the prom two years ago and had a blast.”
She also needs around-the-clock care. Terri, 55, and her husband, Ron, 57, are worn out.
They wonder what will happen to their daughter as they grow older and when they are no longer around. That’s one reason they want to put their daughter in a group home.

Read more here: http://www.kansas.com/2012/01/14/2175195/changes-to-medicaid-sowing-uncertainty.html#storylink=cpy

Bandleader Doc Scantlin and His Wife's Lifelong Struggle with Autism

2012-01-14T11:09:00.005-05:00

She wears a red tulle dress with a tight bustier with sequins that frame her impressive decolletage, a plume of tulle flowing down the back of her legs. A red-feathered headdress shivers upon her blond updo, above a pale face with striking red lipstick. She’s Chou Chou Scantlin, a songstress built like a Barbie doll, crooning “As Time Goes By.” Behind her, Doc Scantlin, her husband, leads his Imperial Palms Orchestra , a 15-piece, 1930s-themed band that has been a fixture in the Washington area for more than 20 years.
Tonight their audience is members of the Scottish Rite Freemasons, a mostly over-50 group slowly filling the massive Washington Hilton ballroom. As the tempo picks up, couples self-consciously take to the edges of the dance floor, while Doc — dapper with a pencil mustache and white tails and spats — tells corny jokes and sings standards such as “Night and Day” and “Minnie the Moocher.” Chou Chou (pronounced “shoo-shoo”), 58, flirts with the men in the audience, rubbing one man’s bald head and exclaiming, to his tablemates’ delight, “More skin to kiss!” When Doc starts playing “Paper Moon,” she pulls two men in suits onstage and says, “This is Lou and Bill! They’re going to blow bubbles for me!”
In truth, there’s little separation between the two personas onstage or off. Stop in at their bayside Calvert County home unannounced, and you’ll find Doc, who’s 65, in a bow tie, pressed pants and shirt. It’s how he has dressed his whole adult life.
With a perfect figure, Chou Chou looks years younger than her age, a youthfulness exaggerated by a breathy, sweet-as-pie voice that always sounds as if it’s on the verge of a giggle. But her disposition is particularly striking, considering the tragedy she has dealt with and her lifelong struggle with autism.

Public Schools Need Funding for Autism

2012-01-14T11:05:00.001-05:00

From Technorati's Jeremy Robb.

I'm very lucky. I live in the boundaries of one of the largest school districts (if not the largest) in the State of Utah. That means this school district is well funded as it covers the more affluent East side of the valley, as well as the less affluent West side. And because it is well funded, the school district has been able to build a special school for special needs students, like my son. He has an occupational therapist that works with him and his sensory needs, a speech therapist that is assisting him in learning to talk, a fabulous teacher that coordinates the effort, and a supportive environment that helps all the students that are in need.
And there are quite a few. As Autism becomes more recognized, more children are entering our public school system with needs that many schools across the country are finding difficult to meet due to funding issues. Many districts do not offer special programs for Autism, because they just can't offer any special programs. Having spoken with many other parents in Utah,

Audit: Former Arkansas Center Residents Healthy and Safe in the Community

2012-01-14T07:21:00.002-05:00

LITTLE ROCK, Ark. — Scores of developmentally disabled patients who were moved when the Alexander Human Development Center closed last year over concerns about their care are healthy and well served at new facilities, lawmakers heard today.
Of the 109 residents who were transferred when the Alexander center closed in June 2010, 59 are living in privately run facilities, 45 were transferred to other state facilities and one is living independently, according to a state audit presented to members of the Legislative Joint Auditing Committee.
Four others have died, according to the report.

Transition Time for Teens with Autism

2012-01-13T08:44:00.002-05:00

Now that an autism diagnosis is 10 times more common than it was in the 1980s, more children than ever before are undergoing effective early interventions and treatment plans. However, one aspect of the disorder that has yet to garner attention is the scarcity of support for young adults transitioning out of high school and into adulthood.
“There is a severe lack of knowledge for educators and parents regarding available options after the public K-12 system,” says Rodger Stein, M.A., an instructor at UC Davis Extension and professor of psychology with the Los Rios Community College District who specializes in behavior supports for youth with high-functioning autism or Asperger syndrome. “We have to get to the point where our students are the ones driving their own transitions based on their own futures.”

They're People First!

2012-01-12T15:58:00.002-05:00

Came across this article from Canada and it's just too powerful to pass up. Have to change the perception of people with disabilities as victims. They are people -- just like anyone else.

Historically, people with disabilities have been regarded as individuals to be pitied, feared or ignored.
They have been seen as helpless victims, offensive adversaries, heroic people overcoming tragedy and charity cases that are dependent on others for their wellbeing and care.
The media would focus on heartwarming stories of inspiration that reinforced stereotypes and patronized and underestimated people’s abilities. They have also been treated as people who are incapable of making decisions about their own lives. Behaviour, life skills, social skills programs and so on were set up to address what they needed based on their diagnosis.

Autism Units Lacking at U.S. Hospitals

2012-01-12T13:54:00.000-05:00

More psychiatric hospitals are working to meet the needs of a burgeoning population of kids with autism and other developmental disabilities, a new study finds, but despite significant growth, services remain limited.
Researchers found just nine hospital units across the country that focus specifically on the needs of those with autism and other developmental disorders. That’s more than twice the number that existed 10 years ago.

Nickels, Dimes and Autism

2012-01-12T08:12:00.001-05:00

From Huffington Post's Todd Drezner.

At my son Sam's school, the math curriculum has recently been focused on coins. By the time Sam is an adult, all financial transactions will probably take place via the microchips implanted in our heads, but nevertheless, we've been dutifully working to help him understand pennies, nickels, dimes and quarters.
It's been a challenge. Unlike reading, which came easily to him and which he's very interested in, Sam doesn't really care about money (lucky kid). So one night, when we were going over the value of coins for what seemed like the hundredth time, I said to Sam, "Repeat after me. One dime is the same number of cents as two nickels."

Autism Speaks Executive Named to President's Committee

2012-01-12T08:05:00.003-05:00

The White House has announced that the President intends to appoint Autism Speaks Executive Vice President of Programs and Services Peter Bell to serve on the President’s Committee for People with Intellectual Disabilities, which advises the President and Secretary of Health and Human Services on issues that impact people with intellectual disabilities and their quality of life. The Committee consists of 21 citizen members appointed by the President and 13 ex officio (Federal Government) members designated by the President.

Waiting List Funds, Oversight Still Critical

2012-01-11T10:31:00.002-05:00

LINCOLN, Neb. -- With the number of high-profile issues facing state senators, they might be tempted to move on from focusing on developmental disabilities.
Credit Sen. Steve Lathrop for not letting a still-critical issue slide. Lathrop on Monday introduced a resolution asking the Legislature's Executive Board to extend the committee he chairs that was created in 2008 to focus on issues at the Beatrice State Developmental Center and other community facilities serving the developmentally disabled.
The committee was formed in light of a Department of Justice report in March of that year that detailed the systemic culture of abuse at the center as well as revocation of federal Medicaid certification, causing the annual loss of about $30 million in federal dollars.

Children with Disabilities Moving Out of North Carolina for Services, Study Shows

2012-01-11T08:23:00.001-05:00

RALEIGH -- An advocacy group for people with disabilities is calling on North Carolina officials to better care for children who have both a mental illness and developmental disability, hundreds of whom have been sent to live in facilities outside the state because of a lack of adequate resources closer to home.
A study released today by Disability Rights North Carolina says the state is failing children with a "dual diagnosis," such as having both autism and bipolar disorder.

Kids with Disabilities Moving Out of North Carolina for Services, Study Shows

2012-01-11T08:23:00.000-05:00

Viewpoint: Autism Is the Unexpected Party

2012-01-11T08:12:00.003-05:00

Inside the Puzzle blogger Devon Alley provides a parental perspective on childhood autism, sensory integration dysfunction, and other issues.

For some reason, I've been reading a lot of negative and depressing posts about autism lately. I'm guessing this may be because Extreme Makeover Home Edition is coming to my hometown, and since Jenny McCarthy is coming to Knoxville as part of that project, the word on the street is that the initiative will be helping a local family that's affected by autism. This has reignited the local branch of the "vaccers vs. anti-vaccers" debate, which has been part of negativity, and has also brought attention to some very real problems that many people in the community are currently dealing with, such as a single mom being evicted from her apartment because of her autistic son's noise disturbances.
Don't get me wrong -- it's good that such a big media event is bringing attention to these issues, and it's good to have these debates and conversations in a public forum. The minister of my church, Rev. Chris Buice, said something in his sermon last Sunday that I feel would be especially applicable to these discussions:
"So much of what passes as dialog in our culture is really about defeating an opponent, humiliating an enemy, destroying an adversary, winning an argument, instead of winning new understanding, winning new awareness, winning new friends."

Life Milestones and Autism

2012-01-11T08:05:00.001-05:00

From Technorati's Jeremy Robb, who has a child on the autism spectrum and has been a staunch advocate for research and therapy for children with autism, and finding the tools that will make parents more effective in raising their children.

Autism has an impact in many different parts of a family's life. Families will battle with the condition in order to teach basic self-care skills such as hygiene, dressing one's self, cooking (or at least getting cereal), and so on to be sure their children will have those skills that are necessary to take care of themselves. During these long sessions, other children are reaching milestones such as riding a bike, walking to school with friends, participating in important religious and social events, etc.
Of course parents are concerned that their children are missing out on these important childhood milestones, and look for ways to have their children enjoy as much as their peers. But some milestones require a level of understanding that is demonstrable that may not be possible for a child on the Spectrum. This becomes a problem.

Study Finds Autism-Gastrointestinal Link

2012-01-11T08:00:00.001-05:00

Children with autism have bacteria in their gut that is different from the bacteria seen in kids who do not have the disorder, researchers have found.
In their report, published Jan. 10, 2012, in the online journal mBio, researchers from the Mailman School of Public Health at Columbia University in New York City suggested that this finding could help explain the link between autism and gastrointestinal problems, such as inflammation.

Utah University, Google Team Up for Autism

2012-01-10T13:45:00.003-05:00

These days, we hear a lot about the disorder of autism, but researchers at the University of Utah have created a program that helps kids with autism focus on building their skills and utilizing an aptitude for visual-spatial thinking, computers and other electronic media.
One of the program participants is 12-year-old Christopher Charles, who was diagnosed with what's now known as high-functioning autism when he was 18 months old. His parents started him in therapies early on, but hadn't found something that seemed to hold Christopher's interest or accommodate his behaviors.

Disabled Immigrant No Longer Homeless

2012-01-10T08:30:00.003-05:00

Bravo to Chicago Tribune for helping this man find a home!

CHICAGO -- Pedro Azpur, an undocumented, developmentally disabled immigrant who has been living at Little Company of Mary Hospital for more than a year, finally has a new home.
Avancer, a nonprofit organization that operates facilities for adults with developmental disabilities, agreed to take the 35-year-old man to a home in Genoa last month.

N.J.Hospital Fires Neuroscientist Over Controversial Autism Treatment

2012-01-10T08:27:00.001-05:00

SECAUCUS, N.J. — The neuroscientist who would have overseen a controversial therapy for children with autism has been fired by Meadowlands Hospital Medical Center in Secaucus and, in a separate action, his nomination to a state commission on brain research has been delayed.
Philip DeFina was part of an ambitious plan by Meadowlands to offer hyperbaric oxygen therapy to children diagnosed with autism. The therapy, typically used to treat burns and other wounds by energizing dying tissue, required approval from the state Department of Health and Senior Services. Meadowlands would have been the first hospital in the state to offer the experimental treatment.

When Teens with Autism Want to Drive

2012-01-09T16:51:00.001-05:00

In the first study to investigate driving as it relates to teens with a high-functioning autism disorder (HFASD), child development and teen driving experts at The Children’s Hospital of Philadelphia’s Center for Child Injury Prevention Studies found that two-thirds of teenagers with a high-functioning autism spectrum disorder (HFASD) who are of legal driving age in their state are currently driving or plan to drive.
The study is published this month in the Journal of Developmental and Behavioral Pediatrics.

Facts and Myths About Autism

2012-01-09T08:36:00.002-05:00

Came across this column by Pamela Gross Downing, a special education teacher.

Many years ago while working with special needs children, the teacher discovered that there were several myths about autism spectrum disorders (ASD). Over time, people often heard lots of misinformation about the disability.

New Hampshire Offers Work Incentives

2012-01-09T08:28:00.002-05:00

CONCORD, N.H. -- Determined to lure the disabled into the workforce, a New Hampshire agency is offering a bonus for people who go through a job-skills program and land a job.
A $50 gas card; one a month.
The gas card is just the start for NH at Work, a program by Granite State Independent Living that targets the thousands of disabled people in New Hampshire who could be working.
“Everyone’s employable. It’s just finding their unique situation,” said Chris Purington, business development administrator at Granite State Independent Living, which announced the gas-card incentive this month.

Asperger's Syndrome Being Redefined

2012-01-08T17:51:00.002-05:00

Column by Daniel J. Vance, a Licensed Professional Counselor (LPC) and Nationally Certified Counselor (NCC).

Dr. Diane Twachtman-Cullen, editor-in-chief of Autism Spectrum Quarterly, began working with children with autism 25 years ago, "back when autism was a rare disorder," said Twachtman-Cullen in a telephone interview. "It involved about two (children) in 10,000 then." Now autism affects one in 110.
A National Institutes of Health website defines Asperger's syndrome (AS) as a mild form of autism and notes people with AS have three core symptoms: obsessive or repetitive routines, poor communication skills, and physical clumsiness. People with AS often are called "geeks" or "nerds."
Twachtman-Cullen described two boys, in particular, with Asperger's syndrome: one she worked with beginning in fourth grade; the other, from first grade on.
She said, "They both had problems socially and didn't have friends. That didn't matter to them at first, but as they approached adolescence, it did. For example, with the boy I began working with in first grade, at first he could care less if he had friends. When he got into seventh grade, however, it did matter. There are exceptions, but this has been my experience with children with Asperger's. At some point, most want friendships but don't know how to go about making them. That's one distinguishing characteristic between them and children with straight autism."

N.D. Lags in Disability/Elder Law

2012-01-08T13:55:00.002-05:00

Oped by John Johnson, an advocate/trainer at the Options Center for Independent Living in East Grand Forks.

EAST GRAND FORKS, N.D. — I came across a section of the North Dakota Century Code (14-04-01) that deals with “grounds for annulling marriage.” Reasons 3 and 6 of that section state that such annulment may be granted for reasons of disability.

That’s really offensive to people with disabilities.
True, the section likely was written in a different era; but nonetheless, it still exists, and it should be modified or nullified.
Which brings me to the larger question of how a state so rich in resources and finances continues to treat the elderly and people with disabilities. It is almost like the “massa/slave” relationship of long ago.

Minnesota Town Seeks Legislation on Concentration of Group Homes

2012-01-08T09:16:00.004-05:00

BURNSVILLE, Minn. -- Sometimes the calls come multiple times a day.
A resident with physical or developmental disabilities and traumatic brain injuries has wandered away from a group home for adults, and the staff asks Burnsville police to find the missing person.
"We might get three or four calls the same day on the same person," Police Chief Bob Hawkins said. "It really started to drain our resources."
The challenges with adult group homes, also known as adult foster homes, came to the fore as the city discussed its 2012 budget. Hawkins, who stressed that the police work to keep everyone safe, pointed to increased calls to group homes for things that could be handled differently -- for example, when residents are angry with one another or staff members, or false reports, neighbors' complaints about loud music or repeated calls about people leaving the facility.

'Touch' Gets to Kiefer Sutherland

2012-01-08T09:11:00.002-05:00

Kiefer Sutherland runs through a packed Grand Central Station, dodging bystanders and scanning the crowd for suspicious activity. The minutes fly by — seen in frequent close-ups of ticking clocks — drawing closer to a potentially explosive moment. Sutherland confronts a guy on a public phone, spins him around and starts punching.
Wait, is Jack Bauer back on TV?
He's not, but Sutherland is returning to the Fox network. Only his new drama, "Touch," owes more to feature films like "Crash" and "Short Cuts" than to his previous award-winning espionage series, "24." He just happens, in the first episode of "Touch," to be racing against time to unravel a mystery, an unintentional bone for "24" fans since it was written before Sutherland signed on.
The new drama, which will have a sneak preview Jan. 25 after "American Idol," centers on Sutherland's character, Martin Bohm, a former journalist and single dad to a special-needs 11-year-old boy.

Melatonin Eases Sleep in Children with ASD

2012-01-07T13:07:00.001-05:00

A new Vanderbilt study shows that the over-the-counter supplement melatonin is promising in helping children with autism spectrum disorders (ASD), and their families, sleep better.
The study, published in the Journal of Autism and Developmental Disorders, contributes to the growing literature on supplemental melatonin for insomnia in ASD, according to lead author Beth Malow, M.D., M.S., professor of Neurology and Pediatrics, Burry Chair in Cognitive Childhood Development and Vanderbilt Kennedy Center investigator.

Learning Pizza-Making Venetian Style

2012-01-07T10:27:00.003-05:00

OK, it's the weekend and in honor of Venice, home of the best pizza (apologies to Patricia's II in the Bronx -- definitely best pizza this side of the Atlantic), I couldn't resist this story.

PITMAN, N.J. — Novice pizza makers learned the steps required to make the perfect pie on Friday morning, as they attended a special workshop by Venice Italian Eatery owner Ron Zold and his pizza chef Shane Ciarrocchi.
“Everybody ready to make a pizza?” Zold asked the clients of Lifestyles Supports — a day program for adults with developmental disabilities. “We’re going to make one ourselves to show you, and then we’ll help you make your own. Then we’ll throw it in the oven and you can eat it.”

Viriginia Beach Home Closed After Owner Fails to Report Drug Charge

2012-01-07T10:20:00.003-05:00

VIRGINIA BEACH, Va. -- State officials decided Friday to shutter a care home for people with intellectual disabilities after they discovered that the owner -- facing a recent neglect charge and scrutiny over earlier complaints about the home -- failed to report that he'd recently pleaded guilty to a cocaine charge.
The decision by the Department of Behavioral Health and Developmental Services came after The Virginian-Pilot inquired whether Lawrence Batiste's Dec. 5 guilty plea for felony cocaine possession would affect his license to operate Pleasante Vue Residential Care Home, a Baker Road facility serving about four people. Les Saltzberg, the department's licensing director, investigated and found that Batiste had not reported the charge as required

Fearing Loss of Life Line Service

2012-01-06T12:56:00.000-05:00

ATLANTA -- Evette King recently sat in her south Atlanta home fretting about how she could avoid eviction without someone to watch, feed and bathe her severely autistic son so she can work and pay the bills.
Last spring, King’s 19-year-old son, Gerald Stephens, joined a growing number of Georgians with mental illness or developmental disabilities who have been discharged or are at risk of being cut off from a state program that has been a life line for thousands of elderly and disabled people for the past 15 years.
The program -- which provides housekeeping, transportation to adult day centers, care management and other services -- not only helps people avoid ending up in nursing homes but ultimately saves taxpayers money, advocates say. Caring for someone in the community costs thousands of dollars less each month than in a nursing home.

Options Amid ADHD Drug Shortage

2012-01-06T08:48:00.004-05:00

NEW YORK, N.Y. -- If the current shortage of some drugs used to treat attention-deficit/hyperactivity disorder (ADHD) has left you searching for something else for your child to take, experts suggest you choose a substitute carefully because the effects of these medications can vary widely.
For example, "generics can sometimes be less bioavailable [how much of the drug is absorbed into the bloodstream], and that can make it harder to get an exact dose match between medications," explained Dr. Eric Hollander, director of the Autism and Obsessive-Compulsive Spectrum Program at Montefiore Medical Center in New York City.

Living with Rett Syndrome

2012-01-06T08:39:00.002-05:00

Cecelia Farley sits at the kitchen table of her apartment in Hailey's Woodside subdivision and watches her friend Marissa cuddle Cecelia's 3-year-old daughter, Delilah.
"Marissa's the baby-whisperer," she says. "She's a miracle worker."
Delilah and Cecelia certainly need a miracle, but sadly, a slightly bigger one than Marissa's magic can conjure.
"Delilah can't communicate," Cecelia, 20, says matter-of-factly. "She's lost purposeful hand movements. She used to put puzzles together and play with cars—now she doesn't play with any toys. She has seizures and heart attacks."
Delilah has Rett syndrome, a rare genetic neurological disorder that occurs almost exclusively in females. The syndrome manifests itself after 6-18 months of early normal development (in Delilah's case, at 11 months), and rapidly causes developmental regression, leading to lifelong impairments.

Wakefield Sues British Medical Journal

2012-01-05T17:19:00.001-05:00

Andrew Wakefield, the doctor who was struck off the medical register after triggering a health scare linking autism to the MMR vaccine, is suing the editor-in-chief of the British Medical Journal for defamation.
In a complaint filed to a district court in Texas, lawyers acting for Wakefield claim that articles, editorials and other statements that appeared in the BMJ were "false and make defamatory allegations" about the doctor.
The lawsuit names Fiona Godlee, the BMJ's editor-in-chief, and the British investigative journalist Brian Deer, who has covered the controversy over the measles, mumps and rubella vaccine, which led to a drop in MMR vaccination rates to dangerous levels.

"Thinking Person's Guide to Autism"

2012-01-05T16:01:00.003-05:00

From Laura Shumaker's blog at SFGate.com

The book that I REALLY could have used when Matthew was first diagnosed with autism is here.
Thinking Person’s Guide to Autism a one-stop resource for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.
The book has only been out for a few weeks and already been declared Book of the Year by Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science.
“Refreshingly free of dogma, disinformation, and heavy-handed agendas,” says Silberman, “Thinking Person’s Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them.”
I recently had the opportunity to sit down and talk with the editors of Thinking Person’s Guide to Autism — Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg. Each woman writes, educates, and advocates within the autism communities. Here is what they had to say about their collaboration:

Maryland OK's $64 Million Contract for Chimes

2012-01-04T20:35:00.000-05:00

BALTIMORE -- The state Board of Public Works approved Wednesday a $63.8 million contract for Chimes Inc. to provide janitorial services for Baltimore/Washington International Thurgood Marshall Airport, despite objections from state Del. Barbara A. Robinson.
Robinson, a Baltimore Democrat, has drafted a bill for the 2012 legislative session that would exclude some nonprofits from the state’s Minority Business Enterprise, or MBE, program. Chimes, a nonprofit, provides employment opportunities for those with developmental disabilities.
“What I am saying is there should be an even playing field,” Robinson told the three-person Board of Public Works panel. “When you put a MBE against a nonprofit, it's not an even playing field.”

R.I. Proposes New Taxes Over Cuts

2012-01-04T20:29:00.001-05:00

PROVIDENCE, R.I. — Another battle over taxes and budget cuts is brewing in Rhode Island as lawmakers look for ways to plug a budget shortfall now pegged at $120 million.
Advocates for the disabled, homeless and other vulnerable Rhode Islanders are calling on lawmakers to raise taxes before reducing services. It's a message that resonates with some lawmakers who are already proposing legislation to raise income taxes on wealthy individuals.

Court Blocks Service Cuts for Disabled

2012-01-04T20:24:00.001-05:00

MIAMI -- A Miami-Dade County circuit judge has issued a preliminary injunction against a plan by the state Agency for Health Care Administration to slice millions of dollars in payments to facilities that serve people with developmental disabilities.
Intermediate-care facilities throughout the state filed a lawsuit Dec. 21 to try to block AHCA from moving forward with the Medicaid funding cuts. The facilities argue that AHCA improperly approved the plan and that it will hurt the quality of care provided to people with severe disabilities.

9-Year-Old with Autism Questions Candidates Prior to Iowa Caucus

2012-01-04T17:49:00.002-05:00

As reporters and candidates canvas the Hawkeye State, one boy has been scouring Iowa to ask Republicans what they would do to help children with learning disabilities.
Nine-year-old Sam Wessels has stood up before the presidential hopefuls time and again this election season. In five YouTube videos with five different candidates, Wessels identifies himself as having autism and asks what each candidate would do as president to help children with special needs.

Opinion: Kansas Shouldn't Shift Medicaid Program to Managed Care Too Quickly

2012-01-03T15:18:00.001-05:00

TOPEKA, Kans. -- Health care providers and advocates — as well as state legislators — have ample reason to be nervous and cautious about major changes in the state’s Medicaid program.
The rising costs of the program make it a natural target for Kansas officials trying to trim the state budget or divert funds to other uses. Kansas isn’t the only state that is pursuing ways to cut its Medicaid costs — sometimes with mixed success.
Kansas already uses a private managed care provider for its HealthWave program, which serves children in low-income families. Gov. Sam Brownback now is proposing a plan that would include the elderly, disabled and mentally ill in managed care plans and to make the entire transition in one year’s time, by Jan. 1, 2013. Although other states are moving toward managed care plans administered by private insurance companies, making such a fast and complete shift is unusual. What works for children in low-income families may not work as well for elderly nursing home residents or people who need long-term assistance because of developmental disabilities.

Two Oklahoma Center Set to Close

2012-01-03T07:52:00.003-05:00

OKLAHOMA CITY -- Sonya Foster wheels around her Oklahoma City home giggling, occasionally watching television and lobbing her favorite words at three health care workers.

While Foster is fed spoonfuls of pudding, workers clean within the home's widened hallways. None of the floors are carpeted, and sharp wall corners are softened with a spongy material. A wheel-in shower stands in place of a bathroom tub. Tubes and medical equipment mix with bedroom furniture.
“This, for many people, is a better way to live,” state Department of Human Services spokeswoman Ann Dee Lee said of community homes such as Foster's. “Nationwide, it's what people are going toward.”

When Turning 22 Is a Catch-22

2012-01-02T09:13:00.003-05:00

Anne Dachel writes about author Susan Senator's recent experience with a son who has "aged out" of school services and the difficulty she faces in crafting a safe, meaningful adult life for him. She has been screaming from the rooftops for years "The adults are coming! The adults are coming!" and few have listened.

This story started with the Washington Post and it was picked up by the Albuquerque Journal. Susan Senator talked about her mission advocating for her son now that he's aged out of the school system. It's mammoth task and she's had to write her own job description.

It brings back so many memories. My son is 25. How he survived in school until I started to homeschool him, I'll never know. In the second grade, the school system got a psychologist to come from Minneapolis (a hundred miles away) to figure out what was the matter with this weird acting kid. She told us, "Your son has autism. I don't know if he'll ever be able to live independently or hold down a job. We don't know much about autism--it's such a rare disorder. There's probably not another child in Chippewa Falls who also has autism."

Luggage Forwarding Services Eases Travel for Families of Children with Special Needs

2012-01-01T20:52:00.003-05:00

As the holiday travel season comes to a close, many parents of children with autism are relieved that it’s over. As we’ve documented in the past, traveling with a child with autism can be a major challenge, with airports and airplanes providing a multitude of sensory challenges for those with special needs. Adding to these issues for parents is the burden of hauling heavy bags around the airport, all while simultaneously tending to their children.
What many may not be aware of is the emergence of luggage forwarding services in recent years. These are provided by companies that offer convenient door-to-door luggage shipping services for a fee. Companies will pick up bags at your home or office and ship them to just about any destination of choice. Your bags will be there upon arrival and the process is then repeated for the return trip home, eliminating the issue of hauling heavy bags around during family vacations or business trips. Prices vary based on destination, bag size/weight and urgency of delivery.

Autism Advice: When Saying Nothing Is Better Than Saying Anything at All

2012-01-01T20:43:00.003-05:00

This Modified Life is a column in The Orange County Register by Jo Ashline for and about the families in Orange County living with special needs. Jo is a freelance writer and married mother of two. If you have a question for Jo or a suggestion for a topic, email her at ashline02@sbcglobal.net.

It begins the minute you announce you’re going to have a baby; well-meaning friends and family bombard you with advice, claiming to have the best to offer in everything from heartburn cures to breastfeeding techniques. Your mother-in-law insists you don’t lift anything heavier than 6 oz and your sister, who’s had 3 natural births in the last three years rallies against the evils of the epidural. It’s a free for all at your expense and even though you don’t technically have morning sickness, you find yourself pretty nauseous anytime someone opens their mouth to bestow yet another tidbit of
Of course, what you don’t realize then is that this was just the beginning, because once the baby arrives, the advice multiplies and you can barely approach your child without someone getting in the way to tell you how to do it “better.”
For the most part, parents are able to if not embrace this constant barrage of opinions and suggestions, at least accept it as a part of the parenting journey. While there’s no doubt that unsolicited advice about how to raise your child is nothing short of annoying, it’s also inevitable that folks tend to stick their noses where they don’t belong where children are concerned. But what happens when the child in question has autism and the person giving their opinions or advice has zero experience dealing with the unpredictable and often frightening nature of raising such a child? Does the playing field change? Is the advice less tolerable, the comments seemingly crueler, the lack of perspective so blaring it leaves you feeling sick to your stomach with resentment and loneliness?

A New Era Begins

2012-01-01T17:55:00.001-05:00

TUSCALOOSA, Ala. -- The State Mental Health Department last week closed W.D. Partlow Developmental Center in Tuscaloosa, marking the close of the institutional era of services for those with intellectual and emotional disabilities.
For almost 90 years, the name W.D. Partlow has been synonymous with mental health care in Alabama, and often that association was not a good one.
Like most states, Alabama opened an institution to house those with intellectual developmental disabilities whose families were unable or unwilling to keep at home. When Partlow opened in 1923 in Tuscaloosa, it was considered the best way to assist those with disabilities and their families.
But a new era dawned in Alabama last week when the state finished moving the last 16 residents from Partlow into small community-based residences.

A New Era Begins

2012-01-01T17:55:00.000-05:00

The State Mental Health Department last week closed W.D. Partlow Developmental Center in Tuscaloosa, marking the close of the institutional era of services for those with intellectual and emotional disabilities.
For almost 90 years, the name W.D. Partlow has been synonymous with mental health care in Alabama, and often that association was not a good one.
Like most states, Alabama opened an institution to house those with intellectual developmental disabilities whose families were unable or unwilling to keep at home. When Partlow opened in 1923 in Tuscaloosa, it was considered the best way to assist those with disabilities and their families.
But a new era dawned in Alabama last week when the state finished moving the last 16 residents from Partlow into small community-based residences.

Telling a Child They Have Autism

2011-12-30T21:39:00.003-05:00

From Laura Shumaker's autism blog at SFGate.com

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

N.J. Partnership to Help with Housing

2011-12-30T12:35:00.002-05:00

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

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

Feds Ordered Wisconsin to Lift Cap

2011-12-30T08:28:00.001-05:00

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

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

2011-12-30T08:24:00.002-05:00

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

A Call for Cracking Down on Bullying

2011-12-30T07:35:00.001-05:00

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

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

2011-12-30T07:27:00.002-05:00

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

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

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

2011-12-29T20:29:00.001-05:00

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