Tuesday, April 22, 2014

Parents of autistic children fight for treatment in an unforgiving market

Parents of autistic children fight for treatment in an unforgiving market
Therapy costing up to $40,000 a year aggravates insurance providers, whose refusal to cover it can leave parents struggling

ABA and OT Therapy were the only solutions to the pain
Nick experienced when he hear loud noises. 
Rob Gorski is a blogger and the father of three boys – Gavin, 14, Elliott, 8, and Emmett, 5 – all of whom are autistic. Gorksi remembered the multiple letters to his home in Canton, Ohio that told him that one of his sons could not renew his health insurance for a popular autism therapy because the insurance officials decided treatment was no longer necessary.
“One time, we got a letter for Emmett that said he was never going to learn,” said Gorksi. “Who are you to tell me that my son isn’t going to amount to something?”
So he turned to his blog, Lost and Tired, a frank and vivid chronicle of caring for three autistic boys. “I raised all kinds of hell,” he said. “I started using my blog to fight. Sometimes it took weeks and months to get the approvals.” Things have changed since then, he added. “Now, it’s automatically renewed.”
It shouldn't be such a struggle, he thinks. Gorski’s children are on Medicaid and, as a result, should be insured for therapy. “People think, 'You’re on Medicaid, you’re okay' – but you’re not,” said Gorski.
Gorski's struggle is a common one for parents of children with autism, a growing cohort in the United States. The number of children with autism has been rising; the latest numbers from the Centers for Disease Control and Prevention estimate that 1 in 68 American children have autism. 
A 2006 report by the Harvard School of Public Health said it cost the US $35bn to care for people with autism through their lifetime. In 2012, the cost leaped to $126bn, according to Autism Speaks, an advocacy organization. 

Insurance coverage isn't keeping up with the demand, and parents of children with autism often find themselves mired in administrative paperwork and vast yearly expenses. Although the Affordable Care Act requires insurance companies to cover behavioral health, it allows the states to decide the details, including the extent of coverage and hours of therapy. As a result, coverage for autism varies from state to state, and even plan to plan.
Parents and advocacy groups argue that children with autism deserve full coverage, just as those with any other medical condition. But a common autism therapy –applied behavior analysis, or ABA – is a sticking point. While applied behavior analysis is widely accepted as one of the most effective treatments for autism, it is also one of the most difficult to get insured. 

ABA is based on the science of behavior and uses one-on-one interaction to teach, communicate and effect changes in the behavior of autistic children. That takes time, from 25 to 40 hours a week of one-on-one therapy depending on the severity of autism. It also usually lasts for years, often starting when the child is as young as two. It can also become vastly expensive, often into five figures a year, which creates a struggle for middle-class families. 

“Much of the expense can be directly related to the intensity of the treatment,” said Matt McAlear, an ABA therapist in San Francisco, adding, “while there is not much we agree on in the autism community, we do agree that autism is a life long disability and that the earlier we can start intervention, the better the long-term outcomes." Autism itself is a spectrum of disabilities –it varies from people with mild social and communication difficulties to those who don’t speak at all. Insurance companies say that since autism includes a variety of conditions, applied behavior analysis, too encompasses an array of treatments. And this, they claim, makes it difficult to promise full coverage. The insurance companies don’t dispute that ABA helps, but they say research hasn't proven ABA’s efficacy.

“Insurance coverage is focused on those treatments that are medically necessary,” said Rhonda Robinson, a health consultant and the chief medical officer at UnitedHealth Group. Medical necessity, by definition, refers to any health service that is “appropriate” for evaluating and treating a given condition.
Insurance companies, Robinson explained, determine medical necessity through research that clearly defines the population and documents the treatment’s efficiency and durability. Is it helping? How long will it’s effects last? ABA research, she said, doesn’t meet many of these criteria yet. “It’s not quite there but it’s getting there,” she added.
The problem has already drawn opponents – and lawsuits – against the insurers. “There has been enormous, long-standing discrimination against people with developmental disabilities by insurance companies,” says Eleanor Hamburger, a Seattle-based attorney who has brought class action suits demanding autism coverage.
It also creates a growing class of frustrated parents. Jennifer Sheridan, the mother of a nine-year-old autistic son, Charlie, is one of them.
“If the data shows that your child is not progressing, they’ll cut you off, and if your child does better than expected, they’ll cut you off then too,” says Sheridan. “So you must sit right on average.”
“Some people are good responders, some are not,” said Hamburger. How long the treatment takes shouldn’t matter either, she argued, because, “If insurers don’t cap services based on age, why should they cap mental health services?”
$85 an hour for 30 hours a week, every week of the year
Sheridan remembers the day she realized she could no longer afford therapy for Charlie. It was Christmas.
“Frankly, we couldn’t keep up any longer,” she says. Charlie, a lanky kid with curly brown hair, was diagnosed when he was two-years-old. Since then, Sheridan and her husband, David, have spent $15,000 a year on average for applied behavior analysis. 
Families such as the Sheridans, who don’t qualify for Medicaid and cannot find insurance plans that cover ABA, are struggling to pay out of pocket. Charlie’s ABA therapy approximately cost $85 an hour. He was prescribed 30 hours of therapy every week. But his parents couldn’t afford to pay for more than eight to 10 hours.
“We never had that kind of money,” says Sheridan. “We had to slowly taper off as the years went by. It just got less and less because we couldn’t afford it anymore.” Last year, they tried giving him the least amount of therapy and it cost them $6,000.
“And that’s low,” says Sheridan. “One year, we spent $18,000. Many families spend $20k, $30k, $40k and up. It depends on how much credit you can get.”
Charlie stopped therapy in January. He hasn’t been to a session since.
“It breaks my heart that I can’t get him any more therapy this year,” says Sheridan. “But we have got mortgage payments. We have got car payments. The amount of debt we have incurred to pay for therapy almost matches our mortgage payment.”
The Sheridans live in Nashville, and Tennessee is one of the 14 states that are yet to pass legislation mandating state insurance plans to cover autism therapy.
The Sheridans are on a self-insured plan paid for by David’s employer, T-Mobile, which puts them in an unusual position because self-insured plans are federally regulated and not governed by state-level mandates. While many companies, including T-Mobile, pay for autism-related therapies such as those for speech, not all of them pay for ABA. They aren’t required to do so by federal law either. Even if Tennessee were to pass a law mandating coverage for autism, that wouldn’t apply to the Sheridans unless the federal government passed a similar law.
'Nothing you say will matter. I have no way to help him'
But that doesn’t deter Sheridan, who is a strong local advocate for Autism Speaks. “What we are hoping is that we’ll get this passed across the country,” she said. Even if the state laws don’t help her, she added, they would help families like hers. And eventually, she believes, the federal government will do the same.
Sheridan, meanwhile, is struggling to help Charlie without his therapy. For the most part, she said, he is doing okay. Her “little blur”, as she likes to call him, is still active. He still loves watching YouTube videos of either elevators or tours of people’s homes.
Charlie was home-schooled for years, Sheridan says, because he couldn’t tolerate the noise or the number of people in a classroom. Now he goes to public school. “He participates in Chinese class, in gym class and math is his strength,” says Sheridan. “ABA did that for us.”
He is popular at school where, Sheridan says, the girls fight over who gets to be his “helper”. He has friends who invite him to birthday parties. Charlie goes but his father always goes with him.
But he still doesn’t know how to cross the street. “He can’t go on the sidewalk by himself,” Sheridan says. “I need someone who can understand his reactions to a street corner. I can’t look that up [online].”
She’s also unsure of what upsets him. When they are driving and she is forced to take a detour, she said, Charlie starts screaming. “I don’t know what’s setting him off,” she said. “Nothing you say will matter. I have no way to help him. He’s verbal but he’s not conversational.”
She worries that things will get worse as he gets older – and stronger. His head already reaches up to her nose. “He’s taken a swat at me but because of [applied behavior analysis] we figured out how to redirect it,” Sheridan says. “But he’s getting bigger, too big for me to handle him. When the hormones set in … that’s what I am worried about.”

Tuesday, April 8, 2014

Disney Parks Refutes Lawsuit Claiming Discrimination Against Autistic Kids

By DOMINIC PATTEN | Tuesday April 8, 2014 @ 1:22pm PDTTags: Americans With Disabilities ActDisney

Walt Disney Parks and Resorts today denied allegations in a lawsuit filed by families of children with developmental disorders that the company has caused them suffering and violated the American With Disabilities Act. The 57-count complaint (read it here), filed last week, seeks damages, injunctive relief, and declaratory relief forviolations of the ADA and the Unruh Civil Rights Act. ”Disney Parks have an unwavering commitment to providing an inclusive and accessible environment for all our guests,” a Disney Parks and Resorts spokesperson said today. “We fully comply with all ADA requirements and believe that the legal claims are without merit.” The scathing legal action filed by 16 children and young adults with autism and other developmental disorders and their guardians and parents contends that Disney’s recently implemented Disability Access Service violates federal and state law and is completely unsuited to the needs of individuals with such special needs. Disney disagrees. “Our Disability Access Service is designed for guests who, due to certain disabilities, cannot tolerate extended wait times at attractions. In circumstances where the service might not meet guests needs, we work individually with guests to ensure we are able to accommodate them,” said the company in a statement.

The 176-page complaint also alleges that, at the same time Disney moved to the DAS system last October, the Parks and Resorts division created a secret ”Magic List” program that could actually help solve a lot of their concerns. “The Magic List is a secret list of persons to whom Disney will automatically extend, without the stigma of a ‘Disability’ card, and without amandatory photograph, and without the newly-ingrained disrespect of Disney employees, five immediate-entry, no-appointment ride passes,” says the April 3 filing in federal court. “The Magic List does not perfectly accommodate the special needs of all persons with cognitive impairments, but it is considerably better than the recklessly inadequate DAS card,” it adds. “Disney is withholding the existence of the ‘Magic List’ from the broader community of families in which someone has a cognitive impairment. By doing so, Disney continues to deter families from visiting the Parks or making plans to do so.” While Disney has a Make-A-Wish Foundation program that provides front-of-the-line access among other privileges, the “Magic List” the plaintiffs allege seems to be something very different. A WDPR spokesperson denied to Deadline any knowledge of the so-called Magic List

Monday, April 7, 2014

Legendary Wayne Henderson My Friend and a Friend to our Kids Died this Weekend

This weekend I lost a dear friend Mr. Wayne Henderson.  He was not only my friend but a man who cared deeply about family and children. He was excited when my daughter was learning how to play Bass Clarinet, and he encouraged her. When my non-profit Special Needs Network threw it's first big fundraiser he was one of my friends I called on make the entertainment special, he didn't hesitate to say yes and he showed up and gave everyone an amazing show.  Every time we spoke he would say "How are the babies? How's Mom?".  I can't believe I won't hear him ask me that again. 

Wayne Henderson, Jazz Crusaders Co-Founder, Dies


Wednesday, April 2, 2014

News Alert: There may soon be a way to genetically test children for ASD.

I read this right after scheduling a new round of genetic testing for Nick. Nick recently got a new doctor. When she reviewed his old medical files, she said “Interesting he has gene number, blah…that shows up in children with autism, he’s got one of the autism genes.”  I just looked at her. No one had ever mentioned this to me! Nick had genetic testing done he was 3 and they were only looking at Fragile X, it was there but at the time no one knew what it meant. It was just a gene they noted. So, yes we know more and yes Nick is going to do another round of genetic tests. Yet the question that remains for me, the most important question is what will change? What difference will it make for him? Is this just more information building a path to nowhere, or somewhere for the benefit of children in many years to come?  Don’t know, but its progress.  Wish it was faster. For all the progress, the new science I just wish I could know that something might happen to preserve the wonders of Nick as a person with autism, and reduce the challenges that make so much of life unavailable to him. 

News Alert: There may soon be a way to genetically test children for ASD. 
So far, there have been "unprecedented advances" in the genetic study of ASD. Perhaps the most significant breakthrough of the past half-decade has been establishing the genetic basis of ASD in the first place, writes author James Gusella, Ph.D.

So far, researchers have identified hundreds of genes associated with varying degrees of ASD risk. Those genes also appear to be related to other neurodevelopmental disorders and psychiatric problems, writes Gusella. The hope is that these breakthroughs will open the door to research on the interplay between environmental factors and genes.
Currently, there is no standard blood/genetic test for diagnosing ASD. Instead, professionals evaluate a child's behavior for signs which include failing to make eye contact with others, repetitive play, sensitivity to everyday noises and a lag in motor skills.
Additional links if you want to learn more....

  • Autism News -- ScienceDaily


    Science Daily
    Read current research on autism including early diagnosis of autism spectrum ... 21,2014 — The same gene family that may have helped the human brain ...
    You've visited this page many times. Last visit: 2/23/14
  • Missing Genes More Likely in Those With Autism | Psych Central News

    psychcentral.com › News › Technology News

    Oct 5, 2013 - Researchers have discovered that people diagnosed with autism spectrum ... “This gives us the power, for the first time, to run one test from a blood ... 2014, from http://psychcentral.com/news/2013/10/06/missing-genes-more- ...
  • Researchers discover a potential cause of autism - Newsroom

    news.unchealthcare.org › News › 2013 › August

    UNC Health Care
    Topoisomerase inhibitors reduce the expression of long genes in neurons, including a remarkable ... Wednesday, August 28, 2013 ... and potentially lead to autism spectrum disorder (ASD), according to research published today in the journal Nature. ... 2014University of North Carolina at Chapel Hill School of Medicine.
  • Autism News from Medical News Today | Page 1


    Medical News Today
    24 Mar 2014. Language development aided ... New APA autism guidelines 'reducediagnosis by more than 30%'. 26 Feb 2014 ... New research underscores the geneticcomplexity in schizophrenia. 24 Jan 2014 ... 5 Dec 2013. Brain circuitry ...
  • New genetic test may improve autism diagnosis | FOX13Now.com


    SALT LAKE CITY -- A new genetic test may lead to a more accurate diagnosis for individuals with autism spectrum disorder by looking ... Posted on: 4:35 pm, February 24, 2013, by Mark Green ... Viewer Photos: March 2014 · shaming-400x225 ...
  • Network News: Gene Discoveries for Autism | NIH Director's Blog


    National Institutes of Health
    Affecting an estimated 1 in 88 U.S. children, autism spectrum disorder (ASD) is a ... Posted on December 3, 2013 by Dr. Francis Collins .... did the chrome X Testing and other things but rule out any genetic cause….any info would be appreciated ... 2014;DNA Analysis Finds New Target for Diabetes Drugs March 11, 2014 ...
  • DNA Shows Washed Up Remains Match Autistic Teen Avonte ...


    Jan 21, 2014 - Avonte Oquendo had been missing since Oct. 4, 2013. ... 21, 2014 that remains found along the East River are a DNA match. ... But, he added, Avonte's mother was awaiting DNA test results before jumping to conclusions.
  • HealthDay - Genetic Disorder News


    Gene Study Offers Clues to Why Autism Strikes More Males ... to prevent genetic diseases in children, the procedure raises ethical issues. 2/19/2014 ... Genetic test for deadly condition spotted healthy embryos for implantation, ... 12/30/2013 ...
  • Disentangling the heterogeneity of autism spectrum disorder ...


    by SS Jeste - ‎2014 - ‎Related articles
    Jan 28, 2014 - Published online: 28 January 2014 ... Autism spectrum disorder (ASD) represents a heterogeneous group of disorders ... We also present current clinical guidelines for genetic testing in ASD and ..... The AAN has not updated these guidelines, but in 2008 and 2013 the American College of Medical Genetics ...
  • Monday, March 31, 2014

    Would Our Kids Have More Friends If They Were Better Dancers?

    I wonder if anything would be different if Nick had moves like Jagger! Would he be cooler at school?  Would cool moves get him asked to the Prom? I'm just saying :). 

    Scientists Discovered What Makes Someone A Good Dancer

    Friday, March 28, 2014

    Autism Rates Soar by 30%!. New CDC Report Confirms 1 in 68

    All I can say, is what I keep saying “Be Afraid, be very afraid”.   If you don’t know why, here’s why:   As a country we are looking at a multi trillion dollar price tag for the care, housing and education of this growing population of extraordinary people and we‘ve  yet  to develop and implement sufficient local solutions, much less national ones.  What has to happen for our country to wake up and fund and develop sustainable programs that will work? 

    CDC estimates 1 in 68 children has been identified with autism spectrum 

     Latest snapshot shows proportion of children with autism and higher IQ on the rise

    The Centers for Disease Control and Prevention (CDC) estimates that 1 in 68 children (or 14.7 per 1,000 eight-year-olds) in multiple communities in the United States has been identified with autism spectrum disorder (ASD).  This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children (11.3 per 1,000 eight year olds) being identified with an autism spectrum disorder.    The number of children identified with ASD ranged from 1 in 175 children in Alabama to 1 in 45 children in New Jersey. 


    The surveillance summary report, “Prevalence of Autism Spectrum Disorder among Children Aged 8 Years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010,” was published today in the CDC’s Morbidity and Mortality Weekly Report.  Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed.
    The data continue to show that ASD is almost five times more common among boys than girls:  1 in 42 boys versus 1 in 189 girls. White children are more likely to be identified as having ASD than are black or Hispanic children.
    Levels of intellectual ability vary greatly among children with autism, ranging from severe intellectual challenges to average or above average intellectual ability.  The study found that almost half of children identified with ASD have average or above average intellectual ability (an IQ above 85) compared to a third of children a decade ago.
    “Community leaders, health professionals, educators and childcare providers should use these data to ensure children with ASD are identified as early as possible and connected to the services they need,” said Coleen Boyle, Ph.D., M.S. hyg., director of CDC’s National Center on Birth Defects and Developmental Disabilities.
    The report also shows most children with ASD are diagnosed after age 4, even though ASD can be diagnosed as early as age 2. Healthy People 2020, the nation’s 10-year health objectives, strives to increase the proportion of young children with an autism spectrum disorder (ASD) and other developmental delays who are screened, evaluated, and enrolled in early intervention services in a timely manner.
    “The most important thing for parents to do is to act early when there is a concern about a child’s development,” said Marshalyn Yeargin-Allsopp, M.D., chief of CDC’s Developmental Disabilities Branch. “If you have a concern about how your child plays, learns, speaks, acts, or moves, take action. Don’t wait.”
    If you suspect that your child may have ASD:
    ·         Talk to your child’s doctor about your concerns.
    ·         At the same time, call your local early intervention program or school system for a free evaluation.
    ·         It’s never too late to get help for your child.
    CDC’s “Learn the Signs. Act Early.” program has joined with others across the federal government to promote developmental and behavioral screening through the Birth to 5: Watch Me Thrive campaign, which will be launched today. The program will help families look for and celebrate milestones; promote universal screenings; identify delays as early as possible; and improve the support available to help children succeed in school and thrive alongside their peers.
    “More needs to be done to identify children with autism sooner,” said Boyle. “Early identification is the most powerful tool we have right now to make a difference in the lives of children with autism.”
    Through the Affordable Care Act, more Americans will have access to health coverage and to no-cost preventive services, including autism screening for children at 18 and 24 months. Most health insurance plans are no longer allowed to deny, limit, or exclude coverage to anyone based on a pre-existing conditionExternal Web Site Icon, including persons with autism spectrum disorder.  Visit Healthcare.gov or call 1-800-318-2596 (TTY/TDD 1-855-889-4325) to learn more. Open enrollment in the Marketplace began October 1 and ends March 31, 2014.
    For additional information on:
    ·         Autism and Developmental Disabilities Monitoring (ADDM) Network and this report, visitwww.cdc.gov/autism.
    ·         CDC’s autism research, visit www.cdc.gov/SEED  
    ·         Developmental milestone checklists and other resources to help families track their child’s development, visit www.cdc.gov/milestones.
    ·         What to do if you are concerned about your child’s development, visitwww.cdc.gov/Concerned.
    ·         State’s early intervention contact information, visitwww.cdc.gov/ncbddd/actearly/parents/states.html.
    ·         Birth to 5: Watch Me Thrive, is part of a coordinated federal effort to encourage developmental and behavioral screening and support for children, families, and the providers who care for them. Watch for updates at www.hhs.govExternal Web Site Icon/watchmethrive (expected to be announced later today).