2011 has come to an end, replaced by 2012. The Holidays, a busy and stressful time for many, are over. It's time to resume winter routines. Here where I write in the North Woods, the winter has been unusually warm, with more rain than snow.
Once more, we have many articles and news items to share with our members.
Here are our article picks for this issue:
Support Groups Manager
The Global and Regional Asperger Syndrome Partnership, Inc.
GRASP Member Paul MacAuliffe was interviewed on CNN's "Health
Minute." Here is the link:
6 Dec 11 @ 07:33am by Alicia Melville-Smith
PLANET SEEKER: Steven Saffi has been nominated for the Channel 9 Young Achiever Awards. Mr Saffi has an honours degree in astrophysics and has attended space camps in Texas, Norway and Canberra.
AS A primary school student, Steven Saffi was told he was unlikely to succeed academically.
The 21-year-old, who has Asperger’s Syndrome, recently completed his honours year in Astrophysics and Space Sciences after achieving a First Class grading the highest mark available.
Mr Saffi, who already has an undergraduate degree in Astrophysics and Space Sciences, will next year begin his PhD.
“(Because of my Asperger’s Syndrome) I found a lot of subjects very boring and didn’t try all that hard when I was in primary school,” Mr Saffi, of Modbury North, says. “It wasn’t until I got to high school that I really became motivated to study astrophysics.
“There were times, especially in primary school, where I didn’t know if I would get to where I am now.”
Since then Mr Saffi has had his eyes focused firmly on the sky, attending space camps in Texas, Norway and Canberra.
In 2007, he graduated from Modbury High School with a Tertiary Entrance Rank of 99.4 and earlier this year travelled to Chile after being selected for a 10-week scholarship at the Gemini Observatory.
Mr Saffi says his fascination with space began while browsing books at his primary school library.
That fascination became a lifelong passion to discover secrets of the universe.
“When I was five years old I read this book about the planets and I got fascinated by it,” he says. “That fascination never went away ... I became more and more interested in space and wanted to know things about other planets and stars.”
Mr Saffi’s determination and achievement has seen him nominated for the Science and Technology Category of the Channel 9 Young Achiever Awards, sponsored by Messenger Community News.
Mr Saffi, who is also a member of the Astronomical Society of SA, says his lifelong ambition is to discover a new planet or star.
“My ultimate goal is to discover new things and find out how the universe works.”
N.Y. / REGION | December 11, 2011
By COREY KILGANNON Published: December 9, 2011
Leironica Hawkins, who is homeless and has Asperger's syndrome, fought back her panic to create a comic book about the ailment.
Leironica Hawkins recalls always having “social problems, sensory issues and bouts of depression,” while growing up in Crown Heights, Brooklyn, as well as behavioral tics like self-rocking and involuntary hand twitches. Finally, at age 28, she was given a diagnosis: Asperger’s syndrome, a form of autism, for which she has never received treatment.
After many years of family turmoil, short-lived jobs and psychiatric difficulties, Ms. Hawkins was released by a hospital nine months ago to a Lower East Side shelter, where homeless people with handicaps live four to a room.
The yelling, the perfumes and air fresheners, the byzantine regulations: it all led to her feeling trapped and anxious. So she adopted a daily routine of leaving early in the morning and returning for the 10 p.m. curfew. She spends her days walking the cacophonous corridors of Manhattan, and has grown adept at finding its nodes of serenity.
She takes refuge in museums — especially the Metropolitan Museum of Art — libraries, art galleries and “anywhere I can go for free that will calm me down,” she said. She wears ear plugs, avoids rush hours and passes up crowded trains. In recent months, she has used public library computers to research Asperger’s and to browse listings for jobs and rented rooms.
After a systematic search of many New York Public Library branches, she found the Grand Central branch, on 46th Street between Lexington and Third Avenues, to be the quietest. But three months ago, panic set in: She noticed a sign in the library soliciting artwork for display in the library.
Ms. Hawkins had always found escape in drawing comics. And she had talent. An eighth-grade teacher made one of her cartoons into T-shirts for the whole class. She got into Art and Design High School and then briefly attended Pratt Institute. As an adult, she did fewer drawings after she smuggled her portfolio into a comics convention and pushed it into the hands of the legendary Stan Lee. He never called.
But now there was this sign, and opportunity was calling. Several panic attacks later, she resolved to create a comic book about her condition, and to submit it to the library branch.
At night, she took to slipping out of her shelter bed and locking herself in the shower. Sitting on the shower floor, she taped her sketch-paper to the tile walls, put her headphones on, and worked for hours. She ignored the knocks on the door, and sometimes redrew the same picture 10 times — a repetitive behavior typical of Asperger’s.
“I was feeling trapped and the creativity helped bring me a lot of confidence,” Ms. Hawkins said. “It was a way for me to say I’m eligible for something.”
“This wasn’t just a comic — it was a journey,” she said. “It changed me as a person.”
She emerged last month with a 22-page comic book, “Asperger’s Syndrome: An Invisible Disability,” which caught the fancy of the branch manager, Jyna Scheeren. The comic went up on the walls, where it will be on display until Dec. 30.
“It represents what the library is about,” Ms. Scheeren said, “lifelong learning and bringing different people together. I’d love to see it as a book.”
The comedic story line acts as something of a primer on the condition, with three teenage characters with Asperger’s, including the autobiographical Andrea, a klutz who has problems multi-tasking and following the boss’s directions. She cannot hold a job and at one point throws a furious tantrum and punches holes in a door, and then loses her job and her apartment.
Many drawings and story elements are based on Ms. Hawkins’s life, including a scene from a nightmare of a job at a Brooklyn Heights cafe.
For research, she sketched and photographed people and places to use as models for the comic. She forced herself past her panic and approached strangers.
The juggler in Union Square taught her some skills and became the inspiration for the scene in which Andrea is seen juggling impossible tasks at work. The cute clarinetist in the fedora near Union Square became a main character, as did the teenagers in the St. Marks Place pizza shop. A man in an art store gave Ms. Hawkins a discount upon hearing about her project.
“I had to get past my fears of approaching people, but the New Yorkers I met were open and friendly and their energy helped me along,” she said on Wednesday as she walked along rainy, crowded Lexington Avenue. She stepped into a coffee shop but could not decide what to order. Back on the street, she winced as an ambulance screamed by. It was raining hard, but she had seven hours to kill before curfew.
“I guess I’ll go up to the Metropolitan Museum of Art,” she said, and disappeared into the crowd in the rain.
Is Asperger syndrome really less common in girls and women, or are females just better than males at masking autistic symptoms?
Rudy Simone, a San Francisco singer, writer and stand-up comic, didn’t learn that she was on the autism spectrum until her mid-40s. Simone has Asperger syndrome — a high-functioning form of autism that leads to social problems but no intellectual disabilities — which, like all forms of autism, appear much more commonly in boys than in girls. Ten times more men are believed to reside on the spectrum than women.
But some experts think the real prevalence of Asperger’s in girls may be much higher than believed, because girls tend to be far better than boys at concealing its symptoms, masking social problems and hiding the repetitive behaviors often associated with autism. So, many women go undiagnosed until middle age, along the way given other labels and therapies that do not address their real issues.
To help make up for the lack of resources available to girls with Asperger’s and their families, Simone wrote Aspergirls: Empowering Females with Asperger Syndrome. Healthland spoke with her recently.
How did you come to write this book?
I’m 47-and-a-half and I didn’t hear the word ‘Asperger’s’ until three-and-a-half years ago. I couldn’t find enough information on females on the spectrum and the word ‘Aspergirls’ just popped into my head, the way good ideas sometimes do. I thought it was a fabulous title and there was a gap in the literature on females on the spectrum and so …
Do you think Asperger syndrome is less common in girls or do you think it’s just that more girls go undiagnosed?
I don’t think they are rarer. There really is a very burgeoning awareness that women on the spectrum are better actors. There is more pressure on us from childhood to be social and to behave in a way that is not shocking or strange. We are good actors, and for most of us that’s why we go undiagnosed or misdiagnosed.
I had to diagnose myself. I contacted several psychiatrists within a 500-mile radius and I couldn’t find a single doctor willing to believe me. [For the book], I made sure to interview only [formally] diagnosed women because I didn’t want a backlash afterwards saying, She’s just interviewing quirky women. I wanted to avoid criticism like that, to compile a composite picture of what women on the spectrum are like, how our traits manifest and the different experiences we have, [often] because we’ve gone undiagnosed all our life.
What are some of the key differences you see in girls with Asperger’s, compared with typical girls?
A lot of challenges don’t appear [until] puberty. We don’t progress to so-called age-appropriate behavior and act like neurotypical women. We tend to have the same obsessive interests throughout our lives. We don’t change in the way people often change at puberty, and that makes us stand out. We tend to lose friends and be bullied. We all share that experience. …
We’re frightened of people. Our primary emotion is fear. [The concept of] other people stimulates the amygdala in our brains, which causes adrenaline overload: this causes the fight-or-flight [response], or freezing. Some will shut down when adrenaline overload happens. Some shut down so much that they don’t speak, and suffer from selective mutism. Other clues include stomach issues. These can all go unwitnessed. They can be seen as piecemeal things that have nothing to do with one another, but they’re all clues.
Sensory issues are [also] now recognized as part of the autism spectrum package and they are universal. What the particular issues are may differ from person to person, but they’re intense and completely color our experience of life.
I understand that a lot of girls with autism spectrum disorders show difficulty going from high school to college.
Yeah, that’s one of many difficult transitions for lots of reasons. Many of us had a hard time getting through high school because of social and sensory overload. If it were just the learning and schoolwork, it would be O.K., but if you are bullied and having sensory issues — well, college is more of the same. The expectations to [make friends and to be social] are higher, and the workload is heavier. Even though we may be intellectually more than capable, emotionally and sensorily, we may have a hard time. There really should be autistic training and support at every single learning institution.
What are some advantages that girls on the spectrum have?
We have incredible focus. I’ve written six books in three-and-a-half years. It frees you up to be that focused on what you want to do. [The key is] to encourage that focus and guide it if necessary so that it expands to be useful and marketable. Temple Grandin [the autistic professor, author and artist] only wanted to paint horses, and her mom said she should paint something beyond just horses.
We’re also very to the point and direct, which is often seen as rude, but you know where you stand with us. We’re guileless. Even though men sometimes say we play social games, we don’t know how to do that little dance that neurotypical men and women do socially. What you see is what you get with us.
The most interesting I thing found is that not only do we have higher IQs, we have higher fluid intelligence: the ability to be visionary and to connect seemingly disparate concepts, to see patterns. [We also have] the ability to self-teach. Temple Grandin is an excellent example. She taught herself draftsman’s drawing and it took her two weeks.
Some researchers have theorized that anorexia may be a female-biased manifestation of Asperger’s, in which the obsessive focus is turned on eating.
I don’t have statistics on that, but it does seem to be a very common part of autism. We very much like control and when kids are forced to eat what the school and parents want them to, it [backfires]. We also have food aversions and also want to be liked, and we might think if we look more like the girls on TV or in magazines, people will like us. We can get self-destructive and, because of bullying, [seek] ways of making ourselves very small. It does seem to be very prevalent.
Do you think girls self-medicate in other ways too?
I have been asked that. I’ve interviewed many people and asked if they drink recreationally or smoke pot, and what I’m finding is we like to use drugs in small doses. But because our bodies are so intolerant, it almost seems like we can’t abuse [drugs too much] because we get so sick. We are so sensitive even to vitamins or prescription drugs. We tend to need one-third of what other people need.
Do you have advice for girls on the spectrum in dealing with sensory issues?
Lots of it! I encourage them to list their sensory issues and have a sensory ‘tool kit’ to take with them wherever they go. I show how to create a compact one, including earplugs or noise canceling headphones; something they can stroke or squeeze for comfort; something that smells good because of smell aversions; and a hat and sunglasses because lots of the time, light and eye contact are difficult; also, gloves for touch and layers of clothing for temperature and security issues. Those are called specific strategies.
In addition to specific strategies, I also encourage total load strategies. Many Aspergirls have post-traumatic stress from bullying, so we can be extremely jumpy. Things like yoga, martial arts, meditation and good nutrition are essential to taming the sensory beast. We’ll always have heightened perceptions, but we can strengthen ourselves and not react quite as debilitatingly.
What about strategies for socializing?
I think that’s the hardest — it’s definitely the hardest part for me. When in school, it’s very helpful to have two neurotypical mentors: one boy and one girl who will sort of look out for you and help you in social situations, be a buffer and translator and someone who can help tell us when we are being bullied, because we often don’t know when we are being bullied till it gets [really bad].
That continues throughout life. We never get more adept. Scripts are helpful. The little niceties that Aspies don’t like, because they seem shallow and insincere, are actually very helpful — like saying, ‘Hi, how are you?’
I think education is also important. There’s too much pressure to learn to be normal. It’s far more important for the world to learn about us: ‘That person’s on the spectrum, that’s why they are the way they are, and that’s why we love them the way they are.’
In your book, you talk about how friends and family should give Aspergirls what you humorously label ‘B.A.L.L.S.’
That stands for belief, acceptance, like, love and support. Belief is believing the diagnosis. First of all, a lot of us spend a lot of time trying to convince people. Believe that the child is an extraordinary person and capable of anything they set their mind to. This applies to autistic people as well, who are often grossly underestimated.
Acceptance is just accepting us for who we are, not trying to normalize us, because that will never happen. Like is because love is really important, but it’s just as important to like your child. We’re often bullied and have few friends. It’s really important that someone tells us that we are likable and are O.K. We hear a lot of ‘I love you, but I don’t like your behavior,’ that’s the message we get from parents.
Love, which goes without saying, is that spiritual quality that is hard to define but you know when you don’t have it.
And support — that sometimes means we’re not quite ready to fly the nest as early as you might like. This can be hard on parents. They want their kid out there in the world and sometimes we need a little more time. A four-year degree might take six years. Sometimes, we need financial and emotional support longer than neurotypical children do.
What about the question of labeling and stigma? Do you think having the diagnosis helps or hurts children?
The trouble is the way the diagnosis is viewed and the way it is handed down. I have girls write to me who have just received the diagnosis and they are told, ‘You will never be able to have a job or a relationship.’
I say, first, fire that doctor and second, it shouldn’t be a diagnosis, it should be a proclamation: ‘You will have intense focus and interests. The likelihood that you will develop incredible skills or talents is much higher.’ There’s a lot of beauty to being on the spectrum.
Even severe autism contains within it the same kind of repetitive nature and focus. Very autistic people can develop incredible skills — it’s simply a different way of neurologically processing input.
[Psychologist and Asperger's expert] Tony Attwood says, ‘You don’t suffer from Asperger’s, you suffer from other people.’ [Suffering is] only in the mirror of other people who see our uniqueness as a flaw. That’s because they’re the majority.
Maybe someday being neurotypical will be a diagnosis: ‘Oh, poor thing,s they have less focus and no special interests and a pathological need to socialize — maybe they need a support group.’
Basketball Profile By Chris Metcalf | Dec 15, 2011
The Livingston County News | Geneseo, New York |
NUNDA — When Nick Faulds first started playing organized basketball for the Keshequa modified squad, failure took its toll on the then eighth-grader.
Born with Asperger’s syndrome, a form of Autism that affects the neurological system, Nick would dwell for hours on top of hours after a not-so-successful outing on the hoops court. Instead of hanging with his teammates, Nick’s week would be spent head-hanging and his confidence hitting an all-time low.
“I was pretty tall but also pretty bad when I first started,” said Faulds. “I really liked playing basketball, but I never thought I was going to be good at it.”
But that all changed.
Dedicating himself to the game he plays today with a deep passion, Faulds, now a 6-foot-2, 180-pound senior, is a starting forward for head coach Todd Isaman’s Indians.
“I have worked with students with autism in physical education but never on the basketball court,” said coach Isaman.
“At first I was a little nervous because when he started playing he would get so down on himself. He would come to tears after a game and he beat himself up constantly. It was to the point where I was unsure if he could handle the ups and downs of a season. As I got closer to Nick, I started to understand how he functions. He sees things in black and white. I kind of babied him at first to make sure he was all right, but then realized that was not helping him. We used basketball as a tool. We pretty much told him that if he didn’t stop getting so down on himself and having a poor attitude that he couldn’t play basketball anymore. It was pretty much tough love.’”
And that “tough love” has worked wonders for Faulds, who dedicated himself the past several years and has used basketball to overcome the every day challenges that Asperger’s has.
Kids who have Asperger’s tend to become fascinated with a single topic of interest. They want to know everything about a certain topic and their conversations with others will be about little else. As a result, kids with Asperger’s are often isolated because of their poor social skills and narrow interests. They often make normal conversation impossible by inappropriate or eccentric behavior, or by wanting to talk only about their singular interest.
Instead of being an average player who used his disability as an excuse, or a crutch, Nick decided to dedicate himself to becoming the best that he can be — this directly through old-fashioned blood, sweat and tears.
“There are many things I admire and respect about Nick,” Isaman said. “To me the biggest thing is that Nick has never used Autism as an excuse. Instead, he used it as motivation.”
Throughout the past several summers, Nick would hop on his bike and ride to the weight room and basketball courts at KCS, bound and determined to increase his basketball ability.
In fact, every morning after breakfast in the summer, Nick would ride uphill — over 30 minutes one way — from his house to KCS to hit the weight room, and outdoor courts at KCS.
“But it would take me only 20 minutes to go home because that was downhill,” said Nick. “I usually got up around seven, had breakfast, and left around eight and was at school by nine.”
“He would spend all day here,” said coach Isaman, who is also the athletic director at KCS. “He’d start in the weight room in the morning and then after a few hours he’d head outside to the basketball courts to wait for kids to show up. Many of those days, nobody else showed up and I’d look out there and see Nick, all by himself, working on his game.”
“If nobody showed up I’d work on some drills,” said Nick, who would work on grabbing rebounds where he’d chin the ball high and squeeze it tight, a drill known to Nick as “The Moses Malone Drill.”
Many of those summer days, Nick would spend double-sessions at KCS where he would bike to school in the morning, work-out, bike home for lunch, and then bike back and hit the outdoor courts in the afternoon, and then bike back late at night when the sun went down.
Nick’s work-ethic also drew the attention of his varsity teammates the past two years as they voted him team captain last year as a junior, and also this winter for his senior year.
In fact, Nick received all 11 first place votes for captain this season.
“That shows you right there how much his teammates think of Nick, and respect him,” said coach Isaman. “Nick takes his responsibility of being team captain very seriously. The kids look up to him.”
Earning team captain the last few years has instilled plenty of confidence, and character, into Nick.
“I am very proud of myself for working hard, and being team captain puts more responsibility on my shoulders, which is nice,” said Nick. “Kids use to think I was just stupid, but basketball has been a very important part of my life. Basketball has also kept me away from drinking and drugs so much I can’t even tell you. While others choose that, I know that if I want to play basketball, I need to stay away from drinking and drugs.”
“Nick’s confidence has played a huge role in his transformation,” Isaman said. “In eighth and ninth grade, Nick didn’t have very much confidence in himself or his ability to play basketball. He had a really hard time back then, but because all of the hard work he put in you could see his confidence start to increase. The more time he put in the more confident he became as a player and a person.”
Nick isn’t just your average player either. He’s averaging nearly a double-double with 10.7 points, 8.3 rebounds and 1.1 assists per game for the Indians, who are 1-2 as of press time.
Nick also leads his team in taking offensive charges, which he has drawn five of in just three games.
Teams that prepare for Keshequa, concentrate plenty on how to contain Faulds.
“Nick was a focal point of our preparation for Keshequa,” said Cal-Mum coach Dan Dickens. “I could tell he improved from his junior season from watching him on film against LeRoy, but I was even more impressed when we played against him. He was much stronger and a more natural basketball player. That stuff doesn’t happen without putting in time and effort. Nick Faulds is the type of kid every coach would like to have on their team and Todd speaks volumes of his value to the Keshequa basketball program.”
High honors, Family support
Nick’s progression on the basketball court has also transformed Nick into a model student who is on the school’s high honor roll, something Nick takes plenty of pride in.
“I put a lot of effort into school because I know if I don’t I won’t be able to play basketball,” said Nick, who has two brothers, Luke and Adam — and one sister, Samantha.
Being picked on during his younger years is something that no kid enjoys, but instead of dwelling on the past, Nick focused his attention to the basketball courts, and that focus has turned him into one of Keshequa’s most outstanding student-athletes.
“Basketball gave Nick something to grab a hold of and focus on,” Isaman said. “Nick has always gave his heart and soul to basketball and his coaches. Every time he goes to practice or to a game he gives 100 percent. He easily could have went down the wrong path and been a follower, but he decided that his school work and basketball were more important. I give all the credit to his parents, Sam and Lisa Faulds. I know it had to be pretty trying at times, especially in Nick’s younger years. They have always been there for Nick — no matter what.”
Not only is Nick a standout on the basketball court, he’s one of the LCAA’s premier high jumpers, where he was seeded No. 1 last spring in sectionals before finishing third.
Hitting a personal-best 5-10 a year ago, Nick’s goal is to clear the 6-2 mark next season.
He will have to fight a little tendonitis in his knee, but he doesn’t plan on letting that stop him.
“My vertical has gone up and I want to win sectionals in 2012,” said Nick. “That’s my number one goal.”
Like most seniors, Nick has a post-high school plan that includes college.
He plans on attending Genesee Community College next fall where he will major in “specializing in adaptive physical education.”
Will he try out for the star-studded basketball team?
“I know I’m probably not athletic enough to play there, but I am going to ask the coach if I could be the student-assistant coach,” Nick said. “I just want to stay involved in basketball any way I can.”
Nick Faulds’ transformation from a young, insecure, vulnerable student at KCS has shifted into one of confidence, composure and stability, this through the sport of basketball, and the support of the community.
With goals that involve, “Getting Coach Isaman to the Blue Cross for the first time,” and “Making the LCAA All-Star team,” you can count on Nick making every attempt to achieve those goals.
But despite what the future entails, Isaman has enjoyed watching Nick grow, both as a person, and as a player.
“Nick means so much to me,” said Isaman. “He goes with my family water skiing in the summer, he brought my daughter a present home from his vacation, he brings our family a big platter of food during the holidays, he has helped me do work at my house, he got hit by a car before a summer league game and still played with his hand all taped up, the list goes on and on. We are all so proud of him and the young man he has become.”
During a Livingston Conference crossover game at Warsaw Wednesday night, Nick hit a 10-foot jumper as time expired as the Indians defeated Warsaw 44-42. It was the first buzzer-beater of his basketball career.
“God was watching over him,” Isaman said.
via SFARI News by Virginia Hughes on 12/20/11
It’s hard to overstate how little we know about adults with autism. Their typical profile of symptoms, brain connectivity, response to drug and behavioral treatments, and even life expectancy are all unknown. Just two things are certain: Many adults with autism exist, and few are able to live independently.
With so many gaps in our knowledge of adults with autism, where should research begin?
A list of top priorities appears in the November issue of the Journal of the American Geriatrics Society. The report summarizes a meeting of the Autism-in-Older-Adults Working Group, which met in Chapel Hill, North Carolina, in March 2010.
There have been a few rigorous studies on adults with autism in the past year. For example, in May, researchers in England published the first study of adult prevalence, finding a rate of about one percent, the same as that of children with the disorder. Up to three-quarters of these adults don’t have jobs and, according to a June study, even those with normal intelligence and language skills are not likely to marry or find work.
This is a major economic and public health issue, as an editorial published 9 December in Autism Research points out. Lifetime direct and indirect costs of a person with autism come to $3.16 million — and that doesn’t include costs accrued after age 60. If the life expectancy of these adults is the same as that of healthy people, then some 700,000 individuals with autism aged 65 or older will need care over the next 20 years.
In the new report, the working group recommends six areas where study is most needed. First, researchers must design diagnostic tests tailored for adults, because most existing options rely on information — such as the age at which they spoke their first word — that makes sense only for children.
Once appropriate tests exist, the report suggests, researchers should study the common symptoms, co-occurring medical conditions and living situations, and conduct longitudinal studies of how each of these changes over time.
They should also conduct brain imaging and genetic studies of adults with autism and compare them to those of children with the disorder to see whether, and how, the brain compensates over time. They could also explore this in various rodent models of autism by allowing the animals to age a few years.
The final two recommendations are likely to have the most immediate impact on adults with autism.
On the other hand, certain drugs found to be ineffective in children with autism may benefit adults with the disorder. A study published 2 December, for example, found that the antidepressant Prozac improves symptoms in adults with autism, even though the drug has no effect on children with the disorder.
Finally, the report points out that researchers must speak out about the need for studies of adults with autism in order to inspire young scientists. It seems like a fantastic area for someone just launching a career: a field with many open questions, scant competition and clinical relevance that is only likely to expand with time.
12-year-old Michael Raven was found hanged in his bedroom on Monday at his home in Burnley, Lancashire, in the UK. The cause of Michael’s death has yet to be confirmed but police are not treating his death as suspicious. Michael was a student at St. Wilfrid’s Church of England Academy and, following his tragic death, Facebook tributes have emerged that claim that he was teased and bullied by girls because he was autistic.
One woman, who said her daughter had been bullied at the school, said: ‘She told me Michael was being picked on by a group of girls from year 8. It sounds like the teased him about his autism’, according to The Sun.
Megan Brandon said: ‘Bullies of St.Wilfrids C.O.E should feel ashamed 13years old 2nd year and taken his own life R.I.P Michael Raven never forgotten loved always.
The school’s principal, David Whyte, said that “the school was not made aware of any bullying concerns in relation to Michael.” He described Michael as “an avid reader” who “enjoyed playing chess and took part in every single house activity here at school”; Michael was indeed “doing really well in school.” Police have also said that there was “no indication at this stage ” that bullying was a factor, but that an investigation is continuing.
Besides the comments on Facebook, comments left on a Lancashire Telegraph article mention both bullying and autism in regard to Michael:
Gemvsshan says… (6:05pm Tue 29 Nov 11). I went to his school, he was in all my classes. I really understood what he was going through, since I myself have been bullied like that aswell. Everybody who’s ever said anything mean to him have been crying their eyes out today, they really have learnt a lesson. We’ve talked to each other before and he was a really nice, bright kid. He was always trying to smile. I just wish I talked to him about all his bullies before any of this happened. I also feel for all his family, because even my family was affected when I was being bullied, including stress and me being emotional all the time. But atleast nobody can harm him anymore.. RIP Michael! We will all miss you! xx
Gemvsshan says… (6:20pm Tue 29 Nov 11): … I go to his school. He told the head and the bullies got told off. But it doesn’t mean they would stop! What else can the school do? All the bullies were taken as far away from Michael as possible. I feel really sorry for Michael, since he got things thrown at him in sertain classes where the teacher couldn’t controll them all! I hope the bullies have atleast learnt from their actions and never do anything like it again. xx
mown43 says… (7:49pm Tue 29 Nov 11): This is the only comment I’m going to make ………. I know Michael and cried not just for him but also for his family…….I work at the ARC club…. Autism Resource Centre……www.actionasd.org.uk He was a lovely boy AND he WILL be sorely missed…
For students on the autism spectrum, there is no question that bullying is a huge concern. Social interactions can be very challenging for autistic individuals and all the more so for children who, as Michael was, are 12 years old — are entering adolescence and the teenage years. Students who are bullied are very likely not to come forward and inform school authorities, their parents and others, for a whole host of reasons including shame and the fear that nobody will believe them. New Jersey (where I live) has passed a very stringent anti-bullying..., in which all members of a school community are required to report instances incidents of bullying, even those that happen outside of school and online.
Some commenters have said that the mention of bullying and the criticism of St. Wilfrid’s is unwarranted.
But one commenter who identified himself as a former St. Wilfrid’s student says that he has a special needs son and that the school did not seem an appropriate setting for a child with such needs:
Blarty says… (7:43pm Tue 29 Nov 11): My son has behavioural problems and is under Special Eucational [sic] Needs, and when I took him round to see the schools when he was in year 6, I was willing to give St Wilfrid’s a chance, more so than my wife was willing to give them, I might add, and to say I was underwhelmed with the quality of SEN support is an understatement.
Another parent of a child with disabilities commented:
rugbythighs says… (8:49pm Tue 29 Nov 11): a piece of news like this always makes my blood run cold, so tragic to think one so young felt such pain to end life. my heartfelt thoughts go to his family at this very sad time. reading through the comments i note michael was autistic. my son has aspergers, a form of autism and a lot of his time at wilfrids is unfortunately not remembered fondly. if there is any blame to apportion i would say it is ultimately the local authority. when my son attended the school there was a special needs support department though obviously not all problems were dealt with, I am told it doesn’t exist now. The special needs children in this region and, i’m sure, others are being dreadfully shortchanged.
Michael’s parents are, very understandably, in shock and “too ‘distraught’ and upset to speak or release a tribute to Michael yet.
via SFARI News by Virginia Hughes on 12/2/11
When I've talked to researchers about the reportedly low prevalence of autism outside of the U.S., Canada and the U.K., the word that comes up repeatedly is ‘stigma.’ Some South Korean families, to use an oft-cited example, think of autism as a mark of shame, and are hesitant to seek medical help for their child's developmental problems.
Less talked about are the parents in developing countries who do, in fact, seek help — sometimes hundreds of miles from home — but have trouble getting it because of poor healthcare infrastructure, high costs, long lines and, most dishearteningly, doctors' lack of awareness. That was what struck me the most in a survey about Rett syndrome in Chinese families, published 21 November in the American Journal of Medical Genetics Part A.
Reported rates of autism prevalence in China are notoriously low. The most recent, published 11 November in Epilepsy & Behavior, is based on a survey of 771,797 households in 31 provinces. The researchers found an autism prevalence of just 0.02 percent in children aged 17 years or younger, far lower than the 1 percent reported in the U.S.
This is one of a handful of autism prevalence studies done in China, most of which have looked at specific regions and are in Chinese. Even the highest rate reported so far, 0.11 percent, is an underestimate, according to the researchers on the new study.
It’s not surprising that these studies have found low rates, because doctors, parents and teachers in China apparently don't know enough about autism to flag troubling symptoms. When researchers led a rigorous autism screening study in South Korea, for example, they found a prevalence of 2.65 percent, but three-quarters of the children identified had not been diagnosed before the study.
Identifying rare forms of autism, such as Rett syndrome, is even more difficult because the symptoms are less known and require genetic testing for a definitive diagnosis. Based on Rett prevalence in other countries, the authors of the new Rett survey estimate that about 1,000 girls are born with the syndrome in China every year. Yet only around 200 cases have been identified to date.
The researchers found 74 Chinese families of children with Rett syndrome who had joined an international online resource called the International Rett Syndrome Phenotype Database. Of these, the team contacted 14 for more comprehensive surveys and phone interviews about their interactions with the healthcare system.
Many of their stories are similar to those of American parents. For example, some of the children were initially misdiagnosed with cerebral palsy or intellectual disability. Many families complained of long waits, high fees and short consultations with doctors.
But other anecdotes are striking.
Some families traveled hundreds of miles to get to a hospital, only to wait many hours, or even days, to see a doctor. One doctor accused a mother of lying because her daughter, who is non-verbal, smiles well. Three families, despite their repeated inquiries, were never given the results of the genetic tests performed on their child. Many families complained that, even after getting a definitive diagnosis, they received no guidance or further information. As one mother said, even at the specialist hospitals, "they don’t know about genetics or Rett. So why would we go there for medical help?"
This is a small sample of children with an extremely rare genetic condition. But I think some of these trends — lack of resources, empathy and awareness about developmental disorders — hold true for many areas of the world with low autism prevalence rates. Combating stigma is important, but there are many other challenges to be tackled to raise autism awareness across the globe.
Posted: 12/ 5/11
On Dec. 8, a French judge in the Lille Regional Court in France must decide whether or not to ban a documentary by Sophie Robert, "The Wall: Psychoanalysis Put to the Test for Autism," that highlights the treatment -- psychoanalysis -- that families are offered in France when seeking help for their child with autism.
The documentary consists of interviews of 30 French psychoanalysts (many of them lead psychiatrists at treatment centers and department heads of notable French hospitals) who place the blame for autism on mothers who are either too cold or too incestuous towards their children.
The psychoanalysts in the film quote Bruno Bettelheim (a proponent of the "refrigerator mother" theory of autism), Sigmund Freud (father of the Oedipus complex and penis envy), and Jacques Lacan when discussing the causes and treatment of autism. In the 1960s, Lacan described psychotic and autistic children as victims of the alienation of a psychogenic mother who is unable to separate from a child who is a substitute for the penis she was born without.
Three psychoanalysts have taken legal action to ban the release of this film in which they were interviewed. The plaintiffs, Eric Laurent, Esthela Solano and Alexandre Stevens, members of the School of the Freudian Cause, contend that they were deceived about the purpose of the film. The filmmaker's attorney, M. Benoît Titran, says:
"The plaintiffs delivered information and were properly informed of the purpose of the film. But they realized afterwards the scope of their statements; therefore they don't assume them anymore and they want to be able to reconsider the authorizations they gave. If the Court accepts their request, the basis of journalistic work will be undermined."
It is not just the basis of journalistic work that is in question here; it is whether or not the public will learn the truth about the ineffective and demoralizing treatment that families with autism are subjected to when other evidence-based (and less expensive) treatments and strategies recognized and implemented everywhere else in the civilized word (except perhaps in Argentina) could be used.
Psychoanalysts have a stronghold in France for the treatment of children despite the lack of any research showing progress in their expensive psychiatric day programs paid for by government medical funds. These ineffective treatments include "Le Packing" -- derived from a 17th century treatment for mentally-ill patients in insane asylums -- where autistic children and teens are wrapped in cold, wet towels. French non-profit autism organizations such as Autistes sans Frontieres and Vaincre l'Autism among others have been battling for years to have their children educated at schools with evidence-based strategies provided by trained teachers and paraprofessionals, rather than to have to enroll their children in psychiatric day programs run by the medical system.
In 2004, a study conducted by the INSERM (The French National Institute of Health and Research) concluded that psychoanalysis therapy is far less effective than other psychotherapies including cognitive behavior therapy. However, the Minister of Health at the time, Minster Douste-Blazythe, had the results of the study removed from the official Ministry of Health website after psychoanalysts complained to him. Such is the political power that psychoanalysts wield in France.
In 2007 Didier Sicard, President of the French Comité Consultatif National d'Ethique (CCNE), a French advisory council on bioethics issues, released the findings of a working group charged with looking into the situation of the 350,000 to 600,000 individuals with autism in France.
The report stated (among other concerns) that children and their families encountered huge problems accessing early and specialized educational programs, had little if any choice in the treatment or educational modality, and that little support was provided to parents. It also stated that the Council of Europe had condemned France in 2004 for not meeting its obligations to provide children with autism an appropriate education, but that this had not resulted in any significant change in the educational care provided to these children. The report affirmed that "ethical and humane solutions are not more expensive."
Despite these findings by two different yet reputable sources, psychoanalysis continues to be the treatment offered to children with autism. Upon questioning, the psychoanalysts admit their techniques are useless. In "The Wall," when asked, "What can an autistic child reasonably expect from an analytic work in terms of results?" one psychoanalyst replies:
"Personally, if the kid does not do anything during the session, if I drowse beside him, I don't care. I am used to that in my work as a psychoanalyst."
Another one answers:
"The pleasure of taking interest in a soap bubble. I can't answer anything else."
French press coverage of the legal action taken can be read in English here.
In my opinion, "The Wall" should not be banned. It needs to be seen by as many people as possible so that the plight of French families impacted by autism can be understood and hopefully improved. If this documentary is banned, it is the French children with autism and their families who continue to struggle to access evidence-based treatments and strategies in an educational setting who will suffer.
Watch the film while you still can. Please spread the word and leave your comments below.
via SFARI News by Virginia Hughes on 11/29/11
With just two prescription drugs approved to treat the symptoms of autism, it's no wonder that an estimated three-quarters of children with the disorder have used complementary and alternative medicines, from massages and biofeedback to vitamins and other dietary supplements.
Among the most popular supplements touted for autism are omega-3 fatty acids, which are thought to help correct a deficiency in children with the disorder. But few rigorous studies have tested their effectiveness. The evidence so far suggests that omega-3 fatty acids don't improve social interactions, communication, repetitive behaviors, hyperactivity or irritability, according to a report published 9 November by the Cochrane Database of Systematic Reviews.
Omega-3s are unquestionably important for normal growth, metabolism and a healthy immune system. The body doesn’t make these fatty acids, so they must be absorbed from foods such as fish oils and flaxseed. It's well known that people who don't get enough of the fatty acids have a higher risk of heart and inflammatory diseases.
What's less clear is their role in the brain.
For example, a 2005 study published in Pediatrics focused on children with developmental coordination disorder, a condition characterized by motor deficits and learning difficulties. The study found that omega-3 fatty acids lead to significant improvements in reading, spelling and behavioral problems in children with this disorder.
However, for other neurodevelopmental conditions, including attention deficit hyperactivity disorder, dyslexia, schizophrenia and autism, the evidence is spottier: Some studies show benefits, but others don't.
The new Cochrane review searched a dozen medical databases for carefully designed trials that tested any dose or type of omega-3 fatty acid supplements in individuals with autism of any age.
As of June 2010, just two studies met the researchers' criteria. The review excluded six other studies because they did not place participants into random treatment groups, did not have a control group or did not treat the control group with a placebo.
The two studies that made the cut included just 37 participants aged 3 to 17 years. After combining results from both studies, the review found no statistically significant differences between treatment and placebo for any symptom of autism, using several tests, including the Aberrant Behavioral Checklist, Social Responsiveness Scale and Peabody Picture Vocabulary Test.
With so few studies and such small numbers, it's hard to say anything definitive about these supplements, and the authors say as much. At low doses, the supplements have few, if any, side effects, however, so for parents, the question may boil down to whether they want to spend $20 a bottle on something that may not work.
Happily, there may be more answers in the next year or two, as results from four large ongoing trials testing the supplements are published.
Tony Kurdzuk/The NJ Star-Ledger
Tommy Ellison, 6, shows off the hyperbaric oxygen chamber which his parents, Polly and Tom, purchased to help treat his autism. The family from Egg Harbor Township said the treatments have yielded great results and helped the boy overcome many of the symptoms associated with autism.
Unable to watch the seizures continue to wrack their daughter’s tiny body, Ann Marie Angelucci said she and her husband were willing to try anything — and pay anything — to help their child diagnosed with autism.
On the advice of other parents, they took Carolyn to a doctor for hyperbaric oxygen treatments, which cost $90 each and required their 5-year-old to lie repeatedly in a pressurized chamber flooded with oxygen.
They also paid $15,000 to install a chamber in their Yardley, Pa., home. Six months later, with no sense the treatment was helping, the Angeluccis sold the device on eBay for about half the price they paid.
"I cannot say one way or another if it helped her. There was no measurable effect," said Angelucci, a nurse and central New Jersey native. "But I wouldn’t tell a family not to do it, because you never know. You’ll grasp at anything that might help."
Come January, the state health department will decide for the first time whether a hospital — Meadowlands Hospital Medical Center in Secaucus — should be allowed to offer this experimental and controversial treatment for children with autism.
Judging from the sentiments on both sides of the issue, there is a lot at stake. Traditional medical experts say hyperbaric treatment offers families false hope while draining their bank accounts because insurance doesn’t cover it. Advocates say the approach deserves more respect and attention by researchers because some families swear it has helped their children communicate and learn.
If the state licenses the hospital’s hyperbaric chambers for experimental use, the work would be overseen by Philip DeFina, who has a doctorate in clinical psychology from an accredited online university. His work with neurologist Jonathan Fellus treating coma and brain-injured patients commands $100,000 a year in out-of-pocket costs from hopeful families across the country, according to the two doctors.
Should the state give its approval, the statewide advocacy group Autism New Jersey won’t recommend it.
"There might be some anecdotes, and they are a nice start to develop a hypothesis, but they in no way substantiate claims of efficacy," said Suzanne Buchanan, clinical director for Autism New Jersey. She suggests families explore the evidence-supported applied behavioral analysis, which requires a child to break down desired actions into smaller steps that are repeated.
Buchanan also recommends "hopeful skepticism" with anything deemed experimental.
"You have to explore things that could make a positive difference," she said, "but if you are not skeptical, you could be led down the wrong path."
A CHALLENGE TO TREAT
With no confirmed cause or cure, autism is the most confounding of developmental disabilities, impairing a person’s ability to communicate, form personal relationships and learn. When New Jersey’s autism rate was evaluated nine years ago by the Centers for Disease Control and Prevention, it ranked the highest in the country, with one in 94 children.
The Interactive Autism Network, the world’s largest autism registry, which is run by the Kennedy Krieger Institute in Baltimore, says fewer than 1 percent of families reported they had tried the hyperbaric treatment, but New Jersey is one of three states where it was the most often used, spokeswoman Elise Babbitt Welker said.
Tony Kurdzuk/The Star-LedgerTommy Ellison, 6, does his homework with his mother, Polly, after school. The Ellison family said treatment of their son with a hyperbaric oxygen chamber has yielded great results and helped the boy overcome many of the symptoms associated with autism.
Edison physician James Neubrander said he has treated approximately 800 children with autism using hyperbaric oxygen therapy since 2005, and thousands more with dietary supplements and other biomedical treatments. He also uses neurofeedback, a treatment that calms and regulates brain waves, which he said DeFina taught him when they met in 2007 to discuss "a mutual patient," he wrote in an e-mail.
The Undersea and Hyperbaric Medical Society says hyperbaric therapy is recognized to treat 14 conditions, such as wounds and "the bends" — decompression sickness sometimes suffered by scuba divers — by raising the oxygen level in the blood and revitalizing dying tissue. Autism is an "off-label" use not yet supported by evidence, executive director Peter Bennett said.
"Critics will say the studies are not out there, and the studies that are out there are contradictory," Neubrander said. "By the time we get the funding for everything, it takes too long. If something is safe and seems to be effective, it should be tried if it is something parents want and enter with full informed consent."
Neubrander warns the therapy is time-consuming and expensive, at about $125 a session. In rare cases, seizures or pain from pressure on the eardrum or sinuses may occur.
"I make sure they know they are not going to get a magic one-time quick fix — the magic-bullet dream that doesn’t exist," Neubrander said. "If done correctly, I have seen it work to some degree for a majority of children."
Tom and Polly Ellison paid $21,000 to put a hyperbaric oxygen chamber in their Egg Harbor Township home after they saw their son Tommy, then 2½, improve under Neubrander’s care. Some 300 hours in the chamber later and with the aid of vitamin supplements, a special diet and behavioral therapy, "Tommy has more friends than I think I ever had at this age. ... He’s a straight-A student. He has no speech impediments or delays," said Tom Ellison.
"It’s alarming the funding has not been put toward this research," he added.
Many pediatricians and neurologists, however, balk at the suggestion hyperbaric treatments should be given the same weight as behavioral therapies.
"Virtually all of the literature supporting the use of hyperbaric oxygen therapy in autism comes from one investigator and is published in obscure journals,’’ said Steven Lomazow of Belleville, president of the Neurological Association of New Jersey.
"The research was funded by the manufacturers of the equipment. Even these papers cite a low number of patients and a need for further investigation," Lomazow said.
Pediatric neurologist Mark Mintz of Cherry Hill said there is no evidence the brains of children with autism have ever been deprived of oxygen.
"Nobody credible seems to see a need to do a study (on hyperbaric treatment)," he said.
Tony Kurdzuk/The Star-LedgerTommy Ellison, 6, grabs the legs of his father Tom, after finishing his homework. The Ellison family said treatment of their son with a hyperbaric oxygen chamber has yielded great results and helped the boy overcome many of the symptoms associated with autism.
Although he would be the hospital’s point person on hyperbarics for autism, DeFina, the scientific officer for Meadowlands’ Institute of Neuroscience, said, "I always had a healthy skepticism for HBOT (hyperbaric oxygen treatments). I am of the belief there is no magical bullet in one treatment. The brain is too complex.
"The hospital will probably roll out some of those clinical programs, but I am not an advocate for them to do that until the research is done," he said.
Senate Health Committee vice chairman Joseph Vitale (D-Middlesex) said he sensed the hospital’s enthusiasm to offer the treatment when the facility’s co-owner, Richard Lipsky, showed him the chambers during a tour in August.
"He told me he was proud to have it because he was going to use those chambers for children with autism,’’ Vitale said during a committee hearing in September. The hearing was held to discuss Meadowlands’ recent change from a nonprofit hospital to a for-profit company and how the hospital is making money. A group of investors converted the nearly bankrupt hospital to a for-profit company last December.
"There is no real body of evidence that says a hyperbaric chamber in any manner treats children with autism," Vitale said. "Do insurance companies pay for that treatment? The answer is no, they don’t. That means parents that are desperate for an answer for their children would pay out-of-pocket to have the procedure."
Meadowlands CEO Tom Gregorio testified that DeFina and Fellus, are "not the most orthodox of physicians. ... For years, this treatment they did for vegetative-state patients was not accepted by the medical community, and it has recently been approved by the FDA to move into the research phase.’’
Vitale said in an interview he remains skeptical about the hospital’s motives. "I don’t believe they are doing this for the right reasons. I think it’s the money and taking advantage of families desperate for an answer," he said.
When Fellus ran the Kessler Institute’s traumatic-brain-injury program and DeFina served as a consultant, they used medication, dietary supplements and electrical stimulation on patients in various states of unconsciousness. Fellus left Kessler earlier this year. Of the 41 patients undergoing the treatment, 28 "woke up" or saw brain function improve, according to an article they published in the Journal of Restorative Neurology and Neuroscience in Germany, specializing in experimental strategies, according to its website.
DeFina and Fellus also gained attention for treating Steven Domalewski of Wayne, a then-12-year-old pitcher who suffered brain damage when a line-drive to the chest stopped his heart in 2006. His mother, Nancy, said he went from being in a coma to "making gains all the time" and now goes to school and went to the prom this year.
"We are with doctors who are really smart and positive," she said.
Tony Kurdzuk/The Star-LedgerThe Ellison family, left to right, Polly, Tommy, 6, and Tom inside their Egg Harbor Township home. The Ellisons said treatment of their son with this hyperbaric oxygen chamber has yielded great results and helped the boy overcome many of the symptoms associated with autism.
Dawn King of Boulder Creek, Calif., said she and her family raised $10,000 to fly in DeFina’s colleagues to evaluate her son Timmy, who suffered a severe brain injury when he was struck in the head with a baseball. They’ve waited for a year to find out whether the team will take the case.
"I know they’ve done good,’’ King said. "We are willing to do whatever it takes," to raise the funds.
Fellus said he and DeFina are inundated with calls from families "who have been told there is no hope.’’
"Where other doctors leave off," he said, "that’s where we pick up."
Like the treatments he researches, DeFina’s background is unconventional.
He obtained a doctorate in clinical psychology in 1995 from Fielding Graduate University, a nonprofit online college that provides the only online doctorate program accredited by the American Psychological Association.
He never became a licensed psychologist. According to the state Division of Consumer Affairs, DeFina obtained a three-year permit to practice psychology in 2005 and let it lapse in 2008. He said he decided to pursue "an administrative and research career instead."
The hospital website has identified him as a "neuropsychologist" and clinician, but DeFina said neither title is accurate. He acknowledged he saw patients when he collaborated with Neubrander, but "in my role as a research neuroscience consultant."
A CLOSER LOOK
An inquiry about DeFina to Consumer Affairs prompted the office to examine his activities and use of the title, division spokesman Jeff Lamm said. According to state licensing rules, psychologists who see patients must be licensed, but people don’t need a license to work in psychology if employed by a school, a research facility, the government or a nonprofit community organization supported by public money. DeFina said he has not violated any rules.
"Dr. Fellus has always overseen Dr. DeFina’s role as nonclinical scientist, researcher and adviser to physicians,’’ and will continue to do so, Meadowlands spokesman Bill Maer said.
DeFina founded the International Brain Research Foundation in 2005 to "advance cutting-edge brain research through global collaboration,’’ according to its mission statement. In 2009, he drew a $483,460 salary despite the foundation running a $406,082 deficit, according to the nonprofit group’s report to the IRS. DeFina said the foundation’s coffers took a hit after a donor sustained a big loss in the Madoff Ponzi scheme.
"Now we’re doing extremely well,’’ DeFina said, thanks in part to a $6.4 million grant from the federal Department of Defense that will allow them to build on their original research.
Health and Senior Services Commissioner Mary O’Dowd will ultimately determine whether Meadowlands can provide hyperbaric treatments for autism and other brain disorders. O’Dowd’s spokeswoman, Donna Leusner, said an answer is due on or about Jan. 6 — 90 business days from the hospital’s request.
"At this point, the licensing program is unaware of any hospitals outside New Jersey where this is being done,’’ she said.
N.Y. / REGION | December 14, 2011
By RUSS BUETTNER
New York reimburses nonprofit providers for home care for the developmentally disabled at such beneficial rates that it has led to multimillion-dollar surpluses and eye-popping salaries.
For their work, which requires no special credentials, the employees typically earn $10 to $15 an hour.
But when the nonprofit organizations that employ those workers bill the state, they collect three and four times that amount — with some having received as much as $67 an hour.
Spending on this little-known home care program, called Community Habilitation, has soared in recent years, creating multimillion-dollar surpluses at some nonprofit agencies and eye-popping salaries and benefits for those who run them.
And it helps explain how New York’s costs of caring for developmentally disabled people have ballooned in recent years, creating the nation’s most generous system of Medicaid-financed programs, with little scrutiny of its efficiency or results.
Indeed, New York reimburses the nonprofit providers for home care visits for the developmentally disabled at such beneficial rates — far more than for similar services here or in other states — that the money has propped up failing nonprofit providers and built juggernauts out of modest ones.
Esther Lustig, executive director of a Brooklyn nonprofit organization that has become a major provider of the home care visits, saw her compensation double, to nearly $400,000, over two years.
Lynne Brush, a retired social worker who served as chairwoman of a nonprofit provider in Kingston, N.Y., said it nagged at her conscience that her organization was able to collect so much more than it paid its workers. “I lost sleep over the fact that we were making money hand over fist,” Ms. Brush said. “I don’t like a system that makes money off poor people.”
The home care program has been described in official documents as “the linchpin” of the state’s plans for services to developmentally disabled people, those with conditions like cerebral palsy, autism and Down syndrome.
Its aim is to help the developmentally disabled build basic life skills so that they do not have to live in state-financed group homes and can stay with their families or by themselves. The tasks the program sets out to teach, like brushing teeth or communicating in accepted ways, can be arduous to master yet life-changing for those who learn them.
Over the past three years, spending on the program has risen more than 40 percent, to $183 million last fiscal year. And like much of New York’s system for the developmentally disabled, it gives significant discretion over how much public money should be spent to the nonprofit providers.
The state allows the providers, for example, to assess how many hours of care a week each developmentally disabled person’s condition warrants. Other states typically have independent entities make that determination, given the obvious incentive to nonprofit organizations to overprescribe services, said Allan I. Bergman, a Chicago-based consultant to providers of services to the developmentally disabled.
“In the old days, we would say it’s the fox guarding the hen house,” Mr. Bergman said.
Until two years ago, each nonprofit provider negotiated with the state for its reimbursement rate. The state phased in regional rates, which are all about $40 an hour. During the phase-in period, some providers received far more, as much as about $67 an hour for those that claimed high expenses.
The providers also decide how much to pay their workers. One upstate provider last year advertised starting pay of $9 an hour while collecting four times that much from the state.
The nonprofit providers have limited expenses beyond the cost of hourly workers. They must generate brief monthly summaries on each person’s progress. And they have few overhead expenses: The employees typically travel from their homes to the homes of the developmentally disabled, so little office space is needed.
After repeated inquiries from The New York Times, Courtney Burke, the commissioner of the State Office for People With Developmental Disabilities, acknowledged that the structure had led to runaway costs.
Ms. Burke, whom Gov. Andrew M. Cuomo brought in this year to overhaul the agency, is proposing that the state abandon the fee-for-service reimbursement system now in place for services to the developmentally disabled.
It has become clear, she said, that some nonprofit providers have taken advantage of it.
“They basically try and line their pockets by billing as much as possible — the more people and the more services, the more they line their pockets,” Ms. Burke said in an interview. She said her goal was to change “the incentives in the system, to be focused on not quantity, but quality.”
Jeff Wise, president of the New York State Rehabilitation Association, which represents nonprofit providers, said that looking at a single program in isolation could be misleading.
“The global picture is one that shows that, at the end of the day, the vast majority of providers are juggling various programs and rates to keep their agencies viable,” Mr. Wise said.
The rate for the home care visits to the developmentally disabled here exceed those of similar services. Companies that dispatch home health aides to help people with other types of disabilities, along with senior citizens, for example, charge Medicare and others a median rate of $21 an hour in New York, according to an annual survey by Genworth Financial, an insurance company that specializes in long-term care.
Mr. Bergman, speaking of the New York developmentally disabled home care program, said, “I think those are very, very high numbers for that kind of a service.”
The revenue pouring in from the home care program to nonprofit providers has helped make some executives quite comfortable.
Ms. Lustig, executive director of Human Care Services for Families and Children, a small organization in Brooklyn, which became the second-largest provider in the program, began working at the agency as a part-time assistant director who made $19,000 a year in 2003, tax records show. But as the agency expanded its home care services, its revenues swelled; Ms. Lustig, now 57, took on the role of full-time executive director in 2005 and now earns nearly $400,000. Ms. Lustig also used Medicaid money to hire her daughter at a salary of $67,000 just after she graduated in 2009 from New York University.
Last year, Human Care billed the state nearly $30,000 for each of its 257 clients. That is almost twice the state average, records show. Most of its clients are developmentally disabled children, which means that Human Care can, in some cases, simply pay a relative to teach the client the tasks rather than hire an employee to do so.
Ms. Lustig said her compensation had increased as a result of her performance and Human Care’s growth. Her organization is “very frugal,” she said, adding that its home care program is saving Medicaid the millions of dollars it would have cost to place participants in group homes.
She also defended the hiring of her daughter to fill in as the No. 2 person managing the provider’s 38 beds in group homes and apartments. The daughter, who had studied psychology and interned at a legal service for developmentally disabled people, held the job for a year until she entered Yale Law School.
“She was very highly qualified for the job,” Ms. Lustig said.
Last year, Human Care recorded a $2.6 million surplus on the $7.4 million it billed the state under the program. That increased its overall cash on hand to $8 million, about half its total annual revenue. Ms. Lustig said her accountants had recommended maintaining a surplus of that size.
But after months of inquiries from The Times, the Office for People With Developmental Disabilities recently referred Human Care to the State Office of the Medicaid Inspector General for investigation, a spokesman for the development disabilities agency, Travis Proulx, said.
“Any surplus that is generated should be immediately reinvested directly into existing programs and services,” Mr. Proulx said.