July. School's out, summer's in full swing, the temperatures are hot. Fourth of July and Canada Day have passed with all their festivities. Some in the US are challenged by storms, loss of power or wildfires.
Here at GRASP we have a new crop of articles for you to ponder. Perhaps not as many as other times, but summer is a busy time.
Support Groups Manager
The Global and Regional Asperger Syndrome Partnership, Inc.
Cut Bank is known for the beauty of its high plains, the lush productivity of its grain and hay fields, and for the history and promise of its oil and gas industry. There is much for the people of Cut Bank to take pride in, including a young woman from the area who has risen to the top of this year's competition for Miss Montana.
At the conclusion of the statewide competition held in Glasgow this year, 18-year-old Alexis Wineman was crowned as Miss Montana. Wineman is a recent graduate from Cut Bank High School and the daughter of Kimberly Butterworth and Michael Wineman.
Wineman' s selection as Miss Montana is made even more impressive by her own struggle to overcome the stigma of autism.
According to the American Psychiatric Association, autism is a disorder of neural development characterized by impaired social interaction and communication. People with autism have social impairments and often lack the intuition about others that many people take for granted.
People with high functioning autism frequently suffer from frequent and intense feelings of loneliness, and may have trouble making and maintaining friendships. Despite this, Wineman, who was diagnosed with the disorder in the seventh grade, won the prestigious competition that requires both poise and confidence.
Wineman said she was a bit "shocked " to win the Miss Montana, especially in her first year of competition. Yet the judges found something compelling in her presentation, a platform of autism awareness entitled, "Normal is just a dryer setting — Living with Autism."
Wineman, who is an art student at the University of Montana, will represent her home state at the Miss America Pageant, to be held in Las Vegas next January. She will also appear in tomorrow's Independence Day parade in Great Falls. The parade will take place on Central Avenue, and begins at 11 a.m.
For local pastor Henry Clarke, a puzzle is solved when he's diagnosed with Asperger's as an adult
Kathleen Poliquin, The Post-Standard
Rev. Henry Clarke has always enjoyed solving puzzles. But until he was diagnosed with Asperger's syndrome at the age of 45, much of his life was a puzzle he just couldn't work out.
Things like math, engineering and computer systems were always a cinch for Clarke to understand, even without formal training. He could usually read a book or manual or just look at a problem and figure out what needed to be done. His talent for understanding what stumped so many others left those around him scratching their heads.
As a child, Clarke was fascinated with circles and spinning things. Rather than ride a bike or pull a wagon, he would tip them over and spin the wheels and gears to see how they worked. He also loved numbers, and once devoured three years of math in one semester.
Finding the pace of classroom learning too slow and boring, Clarke often mouthed off to his teachers. In his hometown of Amelia, Va., and even in his family home, finishing high school wasn't that important, so he didn't.
In his late teens, Clarke was flipping through the TV channels one Sunday morning when he heard a TV minister asking viewers if they were tired of their lives. The minister told viewers God had a plan for them. Clarke said, "I thought, 'I would like my life to be different,' and I prayed, but I didn't know if it would be."
After becoming a Christian, Clarke got his GED and found acceptance from some young pastors. "They just loved me and accepted me," he said. "While I didn't notice how important that was, it was a contrast to being an outsider in other aspects of my life."
Clarke moved to Florida to help out with a new church, and within five years he was managing the computer-aided- design department and the surveying division of the largest engineering firm in Jacksonville, Fla. He also met his future wife, Susan, a Bible school graduate who had just completed a year of missionary work in Eastern Europe.
After attending a Midwestern Bible university, Clarke ended up running the school's information technology department. After that, he landed management and consulting jobs with nonprofit organizations and churches in Texas, Michigan, Canada, Australia and Europe.
In 2000, the Clarkes, both ordained ministers, moved to Guatemala for four and a half years, as co-directors of a large mission organization.
Throughout their marriage, Susan observed Henry's quirky and troubling behaviors, but because he was brilliant and successful, she tried to shrug off his meltdowns and compulsions as eccentricity.
Simple things such as ordering food at a drive-through window confounded him and could trigger a meltdown if Susan or one of their three children changed an order. He was so unnerved by the drive-through their youngest daughter, then 5 years old, once offered to handle it for him.
Susan finally realized her husband really had a problem when he gave a talk at an Indiana church about their missionary work. As he spoke to the congregation, he kept poking his fingers through holes in the lectern, so distracted by the holes he kept losing his train of thought. "At that moment, I realized there was something wrong because he couldn't stop himself," she said. "He just kept doing it until he finished the message."
Angry and embarrassed, Susan confronted Henry about his behavior on the drive home, but he rejected her concerns.
Susan was also anxious about Henry's social challenges. He often missed social cues and had to shut himself up in the basement for a couple days after periods of social or professional interaction with other people.
In 2009, when he was an associate pastor at Abundant Life Christian Center, in East Syracuse, Clarke finally faced the puzzle that was his life.
"As a minister and someone who had done a lot of good around the world, I had to ask myself, 'What is wrong with me?'" he said. "How can so many pieces of my life be successful ... in other people's words, brilliant, and yet simple things are just a struggle?"
He looked for answers. "I came across this article about adults with Asperger's syndrome, and quite frankly, I thought I was reading my own story, so I dug further."
He took a test he found online -- the Autism Spectrum Quotient -- which indicated there was a high likelihood he had Asperger's or some form of autism. While the results were a revelation, it was still a devastating diagnosis. "It can only be described as my life coming together and falling apart at the same time," Clarke said. "It just hit me, because I started realizing what I'd put my wife, my family through."
Clarke's armchair diagnosis was soon confirmed by a neuropsychologist, and he looked to his faith for help.
"One of the things that helped me through all of this was something the apostle Paul wrote, 'In my weakness, God's strength is perfected,'" Clarke said. "I had to acknowledge my weakness and my strength."
Susan said life is much better since Henry was diagnosed. "Before, he needed help, but didn't know he needed it and didn't know he could ask for it. Now he realizes that and knows that certain things he does or things he doesn't do or things he should do, that I bring to his attention, are important."
Henry reached out to Michael John Carley, who was also diagnosed with Asperger's as an adult, after reading Carley's book "Asperger's from the Inside Out." Carley founded the Global and Regional Asperger Syndrome Partnership (GRASP) in 2003. Henry serves on the organization's board of directors and in April, he joined a panel of representatives from different faiths in New York to discuss how faith communities can address the challenges and opportunities presented by members who are on the autism spectrum.
The Clarkes are facing the issue head on as co-pastors at the new, independent church they've started. It's called Hillsview Church and the growing congregation meets at 10 a.m. Sundays at The Palace Theatre at 2384 James St., Syracuse.
"We're trying to focus on helping and loving people, but we're also saying whatever is on the inside of you, that's what we want to develop," Henry said. "... and that means us being real honest with ourselves about what our limitations are and our need for one another."
An autistic teen allegedly breaks a police officer's hand and is shocked with a Taser because he can't calm down in a movie theater. Experts predict more incidents because autism is increasing exponentially in America.
UPDATE, June 13: This story has been posted on the Huffington Post.
A 15-year-old autistic boy is shocked with a Taser by police at a Johnston movie theater because he can't calm down.
The police were responding to a disagreement between the autistic 15-year old and another teen over a stolen wallet. But the situation quickly mushroomed into charges disorderly conduct, theft, and assault with injury on a police officer against the autistic boy, whose parents let him go with friends to watch "The Avengers" at the theater.
"You don't want to see me get mad," the boy told Police Officer Cale McClain after swearing at him, according to a videotape. (Patch does not identify juveniles accused of crimes.) The officer tells the boy to calm down or "it's going to be bad" and threatens to Tase him, according to DesMoinesRegister.com.
Autism advocates and experts say the May incident illustrates the need for more training about autism for first-responders as the number of young people with autism increases exponentially in America.
"The tsunami of autistic adults is beginning to arrive. We'd better be ready or we will continue to have tragic outcomes in these situations," wrote Sherry Cook, a Lexington, KY, parent of an autistic child, in commenting on the Patch.com article.
Number of Autistic Children Continues to Climb
The U.S. Centers for Disease Control, in late March, revised its statistics on the prevalence of autism in America. According to the agency's latest statistics, one in 88 American children is diagnosed on the autism spectrum, a 78 percent increase since 2002. The agency has consistently reported an increasing prevalence of the disorder, although it's unclear why.
Dennis Debbaudt recounts the growth of autism in America this way. When his now-28-year-old son, Brad, was diagnosed in 1987, experts believed autism affected 2 to 5 of every 10,000 children, he said.
Over the course of his son's life, that estimate has been revised to 1 in 2,000, then 1 in 1,000, then 1 in 150. And now, 1 in 88.
"You can say it's more children being diagnosed. You can call it a tsunami or an epidemic, but nobody is really questioning that the CDC is wrong in their prevalence rate," said Debbaudt, a Florida private investigator, whose son's diagnosis prompted him to form a company that specializes in training on autism.
"That's going to stress our social infrastructure, so that will include contacts with law enforcement, first responders, 911 telecommunication, etc.," said Debbaudt.
Autism spectrum disorders now affect more children than diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined, according to AutismSpeaks.org, the nation's largest autism science and advocacy organization.
It's a neurological intellectual disability that impairs how people gather and process information, causing them problems in social skills and communication. People who have been diagnosed with a disorder on the spectrum of autism can range from those who are unable to speak and will always need a caregiver to those who are intellectually gifted.
Do Police Need More Training?
As early as 2001, an article published in FBI Law Enforcement Bulletin said that people with developmental disabilities have up to seven times more contact with law enforcement officers than others.
In the case of kids with autism, many have a tendency to wander, which is a leading cause of death by drowning or traffic deaths, Debbaudt said. But autistic individuals also are often suspects in criminal investigations, in need of help because they've been in an accident or emergency, or have to interact with police because they are a victim or a witness to crime.
Urbandale Police Chief Ross McCarty said his department and the Johnston Police Department often train together and take a yearly course on how to deal with mentally ill or mentally disabled citizens. Although the departments' take more training in this area than they are required to, he said the officers haven't had specific training on autism.
Debbaudt's company trains police department's on how to deal effectively with people with autism. His website lists 25 field response tips for officers dealing with someone with autism.
They include keeping a safe distance from the person, keeping your voice low and calm and keeping your hands low, or waiting as much as 10 to 15 seconds for the person to respond.
But those tips and training aren't enough, Debbaudt said
Educating Families and Autistic Children
"We can't leave it up to the police. Even if we train them for a month or a year, they would never have the ability to field diagnose someone with autism," Debbaudt said.
"We also need to help our families educate our young people for adulthood. We can help young people to learn about what to do when they come in contact with the police," Debbaudt said.
The problem with simply trying to train officers on dealing with autistic citizens, said Des Moines area autism expert Steve Muller, is that "Many of these individuals that don't wear a letter on their sweater that says 'Hi, I have autism'."
Muller, executive director of The Homestead, a Des Moines-area center that provides services for teens and young adults with autism, urges parents to contact police, emergency responders, and firefighters in their town, in advance, to let them know there is a person with autism living in the house.
In Ottawa, Canada, police have computerized records of people with autism. Families can put decals with the autism ribbon symbol on their cars and their windows, said Debbaudt. There are specialized vehicle license plates that are connected to a computer registry of disabled people that police officers can instantly access from their police car.
People with autism, particularly those who are lower-functioning, can have temporary tatoos, wear a medic alert bracelet, or shoe tags.
The best solutions come from a community approach, where police, firefighters, city officials and other first-responders work with parents of autistic children and experts on the disorder, said Debbaudt, who does that kind of community training.
Preparedness will never completely prevent negative encounters. Johnston Police spokesman Lt. Lynn Aswegan said the police department has had a voluntary computer registry of Johnston residents with disabilities for several years.
However, the boy arrested at the movie theater lived in Urbandale.
You can find more articles from this ongoing series, “Dispatches: The Changing American Dream” from across the country at The Huffington Post.
PETALING JAYA: Twenty-one-year-old Vincent Wong has autism but to those who know him, he is a walking GPS
He has memorised every public bus route in the Klang Valley, including the bus numbers and number plates, and can spell out the exact names of the streets the buses ply, which his father, taxi driver Wong Kee Fuen, finds helpful.
Asked how he knows the routes, Vincent said: My mother used to take me on buses and we would travel around KL.
However, despite his remarkable sense of direction and extraordinary memory, Vincent is unable to hold down a job due to the limitations of his disorder a short attention span and inability to respond to normal social cues.
Since his mother died of cancer in 2001, he has been left in a hostel except for the occasional weekends when he gets to go home.
Although Vincent is now being taught basic interactive skills and trained to work in a normal setting at the National Autism Society of Malaysia (Nasom), his teachers say it is difficult due to his age.
Nasom said that if autistic children like Vincent were given the opportunity to develop their remarkable memory and trained from a young age to overcome the disorder's limitations, they could be very successful in life.
Many autistic children are gifted in certain areas, such as music and drawing. However, about 30% of them lose' these gifts as they grow older, he said.
Health Ministry's statistics showed that one in 625 children in the country is born with some form of autism.
Teh said autistic children, who have been placed in an environment where they were given support and opportunities to learn how to adapt, showed quick progress in their education and development of social skills.
It is crucial not just for their parents but for the society to understand and provide them with such opportunities and exposure, he said.
Hidayati Basri, 45, has two autistic sons, aged 12 and 16, who have achieved exceptional grades in their UPSR, PMR and school exams.
The bank officer said it was all about finding out what worked for them and tapping into their strengths so that these could be developed.
They respond best to mind maps. So, I sit with them at the end of each day and draw out mind maps to discuss their progress, she said.
Copyright © 1995-2012 Star Publications (Malaysia) Bhd. All rights reserved.
We are inundated with disturbing imagery depicting autism in the media. Perhaps one of the most famous was a video made by a well-known organization several years ago. It was a montage of a number of parents expressing their distress and the difficulties they face while raising an autistic child. Their children were almost always present as the parents spoke. The camera cut to those same children in full meltdown, stimming or sitting alone in a playground in stark contrast to their neurotypical peers who were running, shouting and laughing, while playing with one another. At one point a parent discussed how, for a brief moment she allowed herself the fantasy of driving off the George Washington Bridge with her autistic child in the backseat.
No one disputes raising a child can be challenging, and raising a nonverbal child all the more so, but that is not the entire story. As someone who once devoured anything on the subject of autism through the lens of ignorance and as a result was paralyzed with the fear these depictions induced, I am aware of the underlying emotional manipulation that is often so obviously being employed. It is propaganda, whether intentional or not, biased, deeply prejudiced and intended to create fear. And it is doing tremendous damage to autistics and to all of our autistic children who will soon grow up to be autistic adults. These types of imagery perpetuate the marginalization and unfortunate stereotyping of people on the spectrum. In using the images of autistic children it negates and ignores the effect these depictions have on those same children 10 or 15 years from now, when they grow up to be autistic adults. Sadly, it is not just any one organization engaged in this kind of negativity and bias. News programs routinely air shows about "savants" who are seen as fascinating curiosities or programs about the tragedy and horrors of autism, citing statistics and the growing numbers, with shrinking resources available.
For those who do not have an autistic person in their life or have never met one, these depictions are what you base your perceptions and assumptions on. Just as when I was first told my daughter, Emma, was autistic, my mind latched onto the image of Dustin Hoffman rocking back and forth while muttering in his role as Raymond Babbitt in the movie "Rainman." Emma is as dissimilar to Raymond Babbitt as I am. But at the time of Emma's diagnosis I knew of no other autistic person, so this was who I immediately thought of and then felt confused as to how my daughter could possibly be autistic. Many years later, when I met Temple Grandin at a lecture she gave, I again found myself looking for similarities. There were few.
Over the years I have read about and met countless autistic children, teens and adults. While some share one or two behavioral similarities to Emma, I have yet to see any where I think "Oh, that's what Emma will certainly be like in 15 or 20 years."
Comparing Emma to adults on the spectrum is something I have been doing for years without realizing it. This is not something I do with my eldest child, Nic. In fact, it never occurs to me to compare him to adults. I know and trust that Nic will continue to mature and grow up to be the responsible, kind, thoughtful, intelligent human being that he is already showing himself to be. Why do I not do this with my daughter? Clearly this is where my work lies. It's a double standard that I hold, one for my neurotypical son and another for my autistic daughter. Here is where using the word neuromajority really is appropriate and more accurate. Nic is in the neuromajority, and therefore I assume things about his future that I cannot know any more than I can predict my daughter's. But because he is in the neuromajority I am able to lull myself into a state of calm, thinking that I know, or feel that the chances are at least better than good that he will grow to be the person I can see him becoming now.
Emma's future remains a giant question mark, and so I fall easily into fearful thinking. The single most important thing to effect my thinking regarding my daughter has been communicating with autistic adults. There are a number of them I particularly like and admire, whom I reach out to and are kind enough to take the time out of their busy lives to communicate with me. I do not assume Emma will grow up to be like any of them, but in communicating with them I am given tremendous hope, because unlike the media coverage of autism and autistic people, they do not live their lives from one dramatic sound bite to another. They are complicated, interesting, intelligent people studying, working and living their lives.
As a result, the frightening portrayals the media seems so enamored with are softened, and I am able to be logical in my thinking when confronted with those images and now even choose to avoid those programs. I do not need these depictions to compete with the very real autistic person in my life who struggles, yes, but who also progresses, is funny and happy, smart and kind and loving, sensitive and unique, who will continue to progress and mature to become a young woman with all of those qualities and more. Being in contact with these kind autists has taught me more than any specialist, article, book or news show. These people with their writing and blogs have opened my mind to the very real possibilities that exist for my daughter. This gives me hope. I fall easily into fearful thinking, but I was capable of that long before Emma came into my life.
For a list of some blogs by autistic adults go to: Emma's Hope Book
The depiction of autism and why it matters
By JOHN VARGO , Tribune Chronicle | jvargo@TribToday.com
WARREN - David Gut (pronounced Goot) played all 18 of his regular-season games on his 9-10-year-old baseball team.
But when it came to playing in the postseason, he didn't.
David, who has Asperger's syndrome, a form of autism, wasn't informed when his team's first postseason game was to be played.
According to mayoclinic.com, "Asperger's syndrome is a developmental disorder that affects a person's ability to socialize and communicate effectively with others. Children with Asperger's syndrome typically exhibit social awkwardness and an all-absorbing interest in specific topics."
The 9-10 Sandy's Tire team from the LaBrae Athletic Club, whose team finished the regular season 15-3, played without David, despite numerous attempts by his father, Jeremy, to get a hold of his coach Shawn Phillips.
"Our coach didn't tell us about tournaments," said David, 9, as he watched Monday's game between Sandy's Tire and Newton Falls' Zip Lube in a 9-10 Cal Ripken championship game at Burbank Park. "Then, he told everyone else we went on vacation. Before this (Monday's) game, he told us how they had the tournament games already."
Jeremy, David's father, was quick to say that team sponsor, players and the parents were not to blame for why his son was not playing in two tournament games last week, one of which was against the Southington Junior Outlaws.
"Why did he ignore us? Why did he lie to the Southington coach that we were on vacation?," said Jeremy, 28, of his son's coach. "He replied back to me that we're giving our kids an even chance against the other teams. The way I took that is our kid is not good enough. I know he's got Asperger's. His motor skills aren't that good. Smart kid. He loves being with the team. He felt left out after we told him what happened."
Then, Monday morning, the LAC board stepped in as it suspended Phillips for the remainder of the season.
"As far as what happened, we don't condone that at the LAC Board," LAC secretary Tony Stephens said. "Every kid is treated equal on this team. If we have a coach that goes outside the rules, we take immediate actions.
"The allegations are serious and we take them seriously."
LAC president George Kaschak was disappointed to hear of the allegations.
"I'm not making excuses, but I've never been in that spot," said Kaschak, who also coaches youth baseball. "People get competitive and make mistakes for whatever reasons. You lose focus of whatever and we've got to be reminded who we're doing this for. The organization is rec ball and we have to continually stress that.
"It is rec ball and it's for all the kids. That's the way we've done things. You're playing to win, but there's integrity and a teaching model, whether you know it or not, when you take upon the part of coaching. You're actually a teacher. More times than not, we tell the coaches, whether you know it or not, you're passing on a lot of life skills."
This is David's first year of kid-pitch ball and he played two years of T-ball and two years of coach-pitch at Lordstown prior to moving to Leavittsburg and playing in the LAC. Jeremy is a 2002 graduate of LaBrae High School.
One of David's coaches last year, Tony Hufford, 30, who now coaches and lives in Newton Falls, said he was dismayed at David's plight.
"It was disappointing to hear that to say the least. I think what was more upsetting was the lies that were being associated with why they weren't able to come to the games," Hufford said. "When you have a situation like this and you have tournaments, it's one thing to stack a team or put star players together.
"You like to hear that coaches have more to them than strictly playing to win. Everybody wants to win, but there's a lot of things taken away from the game other than that."
Kaschak, on the other hand, was shocked to learn that Phillips was accused of this allegation.
"I can tell you I know Shawn personally, for a while," Kaschak said. "This is very uncharacteristic of him, deliberate or whatever was done. The guy's done a lot of work for the LAC and the community. It's bad for all of us. If it would've been any of us, the course would've been the same. We're all friends. We're all a small community. We all know each other. We all know each other pretty well."
Phillips then reached out to Jeremy and told him Monday around 12:30 p.m. that the title game started around 6 p.m.
"He apologized to me," Jeremy said. "He let me know that the game was going to be here tonight around 6 o'clock. He won't be here though because they suspended him.
"He said there will be 10 boys in the dugout upset about this, which kind of caught me off guard because he's trying to turn this situation on me because of what he did."
Phillips did not want to comment to the Tribune Chronicle.
"I'm really not going to discuss it with the Tribune," he said.
Jeremy asked David if he wanted to play Monday.
"He still wanted to come to the game," Jeremy said. "He still wants his team to win. He doesn't want to play because if they win, they can win without him. If they lose, they lose without him. He'll know it's not him. We made that decision completely up to him. We kept asking him, 'Do you want to dress or play?' We brought his uniform in case he wanted to change his mind."
The LAC Board told Jeremy they wanted David to play.
"He was supposed to be dressed for the game," Kaschak said. "He was supposed to play. That was a decision from the family, what the father told me. We didn't agree with that. That was a decision he had to make.
"The board did recommend we wanted him to play. He earned that right."
After the LaBrae team lost to the Newton Falls team Monday, Stephens went up to David, took him out to the field for his runner-up trophy and was put him in line with the rest of his team.
Some of his teammates gave David hi-fives after getting his trophy.
Then, Jeremy said the LaBrae coaches insisted David come to Dairy Queen with the team.
"There's a lot more taught at this age of baseball than just playing to win," Hufford said. "I think these kids take a lot of life lessons from this, how to play as a teammate, good teamwork and how to lose. There's a lot of things carried through life that start at this point."
June 29, 2012 Text Size A A
A new study suggests that changes to autism diagnosis criteria may be more to blame for rising rates of the developmental disorder than anything else.
Since the 1960s, autism prevalence rates have skyrocketed from 4 in 10,000 children to a current reported rate of 1 in 88. The reason behind the rise, however, has remained unclear.
Now researchers are shedding new light on the trend by applying current diagnostic criteria to data from a 1980s study on autism prevalence in what’s believed to be a first-of-its-kind analysis.
The original study, published in 1989, looked at hundreds of Utah residents ages 3 to 25 who were suspected to have autism. Clinicians used DSM-III criteria to assess individuals as “diagnosed autistic” or “diagnosed not autistic” and ultimately found an autism prevalence rate of 4 in 10,000 in Utah at that time.
But when a research team from the University of Utah applied current diagnostic criteria from the DSM-IV-TR to records from participants in the two-decades-old study, they found that most who were deemed to be autism-free at that time would receive the label today.
What’s more, the study authors indicate that the vast majority of those who went overlooked in the original study had low IQ’s and would now be diagnosed with both autism and intellectual disability.
“Thus, while it is well known that current DSM-IV-TR criteria increased the identification of high functioning individuals, our results indicate that they also increase identification of ASD among individuals with autism and intellectual impairment,” wrote researchers in the study published online in the Journal of Autism and Developmental Disorders this month.
The analysis found that 59 percent of those who were “diagnosed not autistic” in the 1980s would qualify as having autism today, while an additional 38 percent of people in this group showed some characteristics of autism.
Meanwhile, those who were found to have autism in the 1980s study continued to qualify for the diagnosis using the current criteria, the study found.
“The results of this study demonstrate a significant effect on ASD case status attributable to changing ASD criteria, particularly with regard to individuals with intellectual impairment,” the researchers said. “An important caveat, however, is that we were unable to determine whether it was the broadening of the criteria themselves, or the interpretation of the criteria, which lead to this effect.”
June 29, 2012 Text Size A A
Advocates are hailing the U.S. Supreme Court’s decision to uphold sweeping changes to the nation’s health care system as a victory for people with disabilities.
The high court ruled Thursday that the nearly all of the Affordable Care Act is constitutional, paving the way for additional provisions of the 2010 law to take effect between now and 2014.
As Democrats applauded the decision, Republicans promptly vowed to repeal the act. Meanwhile, leaders from a host of national organizations representing individuals with developmental disabilities praised the decision.
“People with disabilities and their families have their lives dictated by the status of their health insurance,” said Katy Neas, senior vice president of government relations at Easter Seals. “The Supreme Court’s ruling today tells these families they can make decisions about what is best for them as a family, and not be controlled by fear of losing health insurance coverage.”
President Barack Obama’s signature legislative accomplishment, the health care reform law includes a number of provisions — many of which have yet to be fully implemented — that advocates say are significant for people with disabilities including:
• No more lifetime coverage limits on health insurance plans.
• Insurers will not be allowed to charge higher rates or deny coverage to those with pre-existing conditions, including disabilities.
• Establishes the Community First Choice Option offering states the opportunity to receive increased federal matching funds to support community living.
• Requires health insurance plans to cover a menu of “essential benefits” including mental health services, habilitation and rehabilitation services as well as behavioral health treatment.
More than two dozen states challenged the constitutionality of the health care reform act, arguing that the law oversteps the bounds of federal authority. But the Supreme Court’s 5-4 ruling this week upheld nearly all of the law including the requirement that Americans must purchase health insurance or face a penalty starting in 2014.
“For millions of Americans with disabilities who rely on home and community based services to live, learn and earn in America, the ruling today by the Supreme Court on the Affordable Care Act is arguably the most significant decision since passage of the Americans with Disabilities Act 22 years ago,” said Jonathan Young, chair of the National Council on Disability.
The justices did rule against one provision of the health care law, however, that’s causing some concern among disability advocates. The Affordable Care Act called for states to expand Medicaid to include those earning up to 133 percent of the federal poverty level — currently about $14,856 for a single person — or lose out on federal funds. But the court said that such a mandate could not be imposed.
If the ruling leads states to decide against the Medicaid expansion, many people with disabilities could be shortchanged if they earn too much, said Marty Ford, director of public policy at The Arc.
Nonetheless, Ford said she’s optimistic that states will opt in given that they stand to gain significant federal funding for increasing their Medicaid rolls.
“I think in the end when the states take a look at what’s offered for Medicaid, it’s a tremendous gift,” Ford said.
June 4, 2012 Text Size A A
A recent change in federal policy could lead many more families affected by autism to gain insurance coverage for applied behavior analysis, advocates say.
In a major shift, the U.S. Office of Personnel Management said that it has determined there is enough evidence behind the use of ABA therapy to deem it a medical rather than an educational service.
The office is responsible for managing benefits for federal government employees, so the announcement paves the way for health plans offered to government workers to include coverage for the popular autism therapy for the first time.
What’s more, autism advocates say it sets an important precedent since the U.S. government is the nation’s largest employer.
“The OPM decision directly contradicts a long-standing insurance industry claim that ABA therapy is not ‘medical,’ but rather ‘educational’ — provided by the schools at taxpayer expense,” said Peter Bell, executive vice president for programs and services at Autism Speaks. “Now, tens of thousands of families will have better access to more affordable, critical ABA treatment.”
Currently, 30 states require that health insurance plans include ABA therapy, according to Autism Speaks, which has lobbied heavily for such legislation.
Under the new rules, coverage for ABA therapy may be included in health plans provided to federal workers starting in 2013.
June 18, 2012 Text Size A A
As an increasing number of states require health insurers to cover autism therapy, some families are leaving communities that don’t offer such coverage in search of greener pastures.
In Utah where no insurance mandate exists, families have crossed state lines for Colorado and fled as far away as New York and Missouri.
While moving was drastic for Brian and Anne Eliason who separated from their family and friends, the couple say relocating to the Denver area was worth it. In April alone the family’s health insurer spent $3,534 on speech, occupational and behavior therapy for their son, Isaac, money that they would have had to come up with on their own if they still lived in Utah.
Some advocates warn, however, that families should consider more than an autism insurance mandate before making a move. They caution that insurance requirements vary from state to state and there are other factors such as special education funding and Medicaid services that will make a difference for those with autism long-term, reports The Salt Lake Tribune. To read more click here.
June 11, 2012 Text Size A A
In what could be a major blow to autism research efforts, scientists say that one-third of the world’s largest collection of autism brain samples has been damaged.
Officials at McLean Hospital, a Harvard affiliate near Boston, found that a freezer where the samples were housed failed in late May, according to a report in The Boston Globe. Two alarms designed to warn of freezer problems had not gone off even as the internal temperature rose and all of the 150 brains inside thawed.
Of them, 53 were intended for autism research, according to Autism Speaks, which runs the Autism Tissue Program that the samples are part of. The collection includes brain tissue from individuals with autism who have died.
Experts told the Boston Globe that the damaged brain samples represented a “priceless collection” and the loss could slow autism research efforts by a decade.
Officials at Autism Speaks, however, were more optimistic.
“Although this event will affect the availability of tissue for future research, we cannot yet determine the level of impact, but we are confident that we can maintain the momentum of scientific studies based on brain tissue,” wrote Geri Dawson, the organization’s chief science officer, in a letter to supporters.
Dawson said that all but one of the damaged brain samples were bisected. As a result, just half of each had been stored in the problematic freezer. The other half of each brain sample remains available for research.
It is not clear what led to the freezer malfunction and a number of investigations are underway. However, given the unusual circumstances, officials at the center where the brain samples were stored told The Boston Globe that they cannot rule out foul play.