Medicaid, Telehealth and Autism

At the 2nd Autism Telehealth Summit, April 23-24 in Boise, Idaho, Ms. Patricia Guidry, LCSW, MPH spoke about Medicaid's policies and approaches to adopting telemedicine in Idaho. Ms. Guidry is a Program Manager at the Office of Mental Health and Substance Abuse at the Idaho Division of Medicaid, and a telemedicine specialist.

Hyperbaric treatment for children with autism: a multicenter, randomized, double-blind, controlled trial

Several uncontrolled studies of hyperbaric treatment in children with autism have reported clinical improvements; however, this treatment has not been evaluated to date with a controlled study. We performed a multicenter, randomized, double-blind, controlled trial to assess the efficacy of hyperbaric treatment in children with autism. ... more (source)

Related:

• Treatments4Autism: HBOT
• Can high-pressure oxygen help autism? - Los Angeles Times
  
• HBOT autism and the NHS « Action For Autism
• Hyperbaric Oxygen as a Treatment for Autism: Let the Buyer Beware (heated debate at About.com on this subject)
• Facing Autism in New Brunswick: HBOT Autism Trial
• HBOT adjunctive role in the treatment of Autism
• To ABA or HBOT or Not?
• The Wonder of HBOT
• HBOT Dives 5-10
• Autism Therapy:Hyperbaric Oxygen Therapy | Autism Therapy: Ask Deb
  
• Dashed Hopes and Measured Steps: HBOT for Autism
• Shannon Kenitz Donates Millions on HBOT for Children
• Hyperbaric oxygen therapy might improve certain pathophysiological findings in autism
• BMC Pediatrics - Studies of hyperbaric treatment in children with autism
• The effects of hyperbaric oxygen therapy on oxidative stress, inflammation, and symptoms in children with autism: an open-label pilot study
• Oxygen therapy breathes new life into autism
• Is Hyperbaric Oxygen Therapy effective?

President Obama and the Autism Treatment Acceleration Act of 2008

Read the entire draft of President-Elect Obama's federal mandate for autism insurance coverage

In support of researchers, clinicians, and families who are working to find a treatment or cure ASD, Senator Obama and the autism community have united behind the “Autism Treatment Acceleration Act of 2008” This legislation authorizes federal funding in order to:

1. Create and evaluate Autism Care Centers, through a demonstration project to develop a national network of comprehensive treatment facilities that provide a full array of medical, behavioral, mental health, educational and family care services to individuals and families in a single location.

2. Establish an ASD Coordinating Committee, consisting of representatives from relevant governmental agencies, researchers, and the public, to coordinate government activities relating to ASD.

3. Establish a national autism translational “Research to Services” network for the purposes of leveraging and enhancing the autism treatment and service capacity of federal, regional, state and local agencies and integrating regional, state and local agencies as fully as possible into national efforts.

4. Create a “National Center for Project Access” to provide training and technical assistance to frontline autism service providers and enhance program evaluation support.

5. Establish a population-based ASD case registry that will facilitate the understanding of the root causes, rates, and trends of ASD.

6. Implement a grants program directed toward public and private nonprofit entities for the purpose of carrying out multimedia campaigns to increase public education and awareness about healthy developmental milestones for infants and children that may assist early identification of signs and symptoms of ASD.

7. Require that insurers provide coverage for the diagnosis of autism spectrum disorders and the treatment of autism spectrum disorders in connection with group health plans.

Source: ATAA 2008 (.doc) (Adventures in Autism)

Woman fights Kaiser on ABA coverage

Woman fights Kaiser on autism policy

Attn: Private Insurers: Autism not ‘rare’ disease, should be taken seriously

Your Turn: Autism not ‘rare’ disease, should be taken seriously

In Monday’s Post endorsement of Jill Thompson (no surprise there), there was an incredibly startling statement that I feel needs to be brought into the spotlight. The endorsement stated that “forcing private health insurers to provide coverage of rare conditions such as autism and diabetes would drive up the price of insurance.” We all know The Post Editorial Board leans Republican, but there are some serious issues with that statement.

Autism and diabetes are NOT RARE diseases. The Center for Disease Control estimated that approximately one in 150 births resulted in a child with autism; take the entire population of Ohio (11,478,006) and divide that by 150 and we can guess that over 76,000 people in this state alone have autism — that’s over three times the size of Athens — and the CDC says it is growing by 10-17 percent per year. As of August 2007, it is estimated that over 9 percent of Ohioans have diabetes. That’s more than 1 million people. It is the fifth leading cause of death in Ohio. It is especially prevalent in the Appalachian region, making it vitally important that the people we elect to represent us understand and care about the issue.

[FULL LETTER TO EDITOR @ THE POST]

Autism Agenda

O'HANLON and SPELMAN: Autism agenda beckons
Michael O'Hanlon and Stuart Spelman

WASHINGTON TIMES COMMENTARY:

In their last debate, Barack Obama and John McCain both graciously expressed concern about children with autism.

Mr. Obama in particular then spoke about the need for more research funding to understand the causes of this prevalent handicap. We concur. But that is hardly the extent of what the candidates need to understand about the state of autism in the United States today. Preventing future cases is crucial, but so is addressing the huge unmet needs of the more than 1 million Americans already afflicted.

Here's an example. At age 2, little Olivia was diagnosed with an autism disorder. Unable to speak, she preferred to sit in the corner of the room and repeatedly push her mini-Ferris Wheel hundreds of times in a row. She did not look people in the eye; she did not try to attract their attention by pointing with her index finger like normal toddlers. She was largely oblivious to, and uninterested in, other kids around her. She even lost the three or four words that she had learned the year before.

Four years later, after 30 hours a week of a type of intensive intervention that resembles speech or occupational therapy, Olivia was in regular kindergarten, following class discussions and interacting with her peers. She still was limited in her use of language, and had trouble keeping up with peers socially - but at least she was imitating and learning from her peers. Her future was still very uncertain. But her prospects for graduating from school, holding a job and having at least some real friendships had gone from nil to rather promising.

Those four years of preschool intervention came at a high price - about $75,000 a year. Medical insurance paid for none of it. Claiming that the therapies, which fell under the general billing of applied behavior analysis or ABA, were still "experimental," Olivia's insurance plan flatly denied coverage. Counting on the fact that mental and cognitive ailments have often been viewed as second-class issues by America's health care system, the insurer was confident it could escape with this bogus excuse. That was the case even though the National Academy of Sciences, American Academy of Pediatrics, and other key organizations endorse precisely the therapy regimen that Olivia followed - and even though ABA has been repeatedly shown to help up to half of all children with autism wind up mainstreamed in school, with the other half showing major progress as well.

It is time for this to change.

[FULL STORY]

Affordable Autism Treatments

Local news coverage about autism treatment and the lack of insurance coverage for people with autism.

South Carolina Residents: Save the PDD Waiver

SCAUTISM FORUM: SAVE THE PPD WAIVER

"If you love someone with autism, please, contact your state representative and senator NOW and encourage them to maintain funding for the Pervasive Developmental Disorder (PDD) Waiver/State- Funded Program. The PDD Waiver provides early intensive behavioral intervention (EIBI) services in the form of Applied Behavior Analysis (ABA) to children with autism spectrum disorders in South Carolina. Without the PDD Waiver, hundreds of children with autism across S.C. will be denied the right to live the highest quality and most independent, integrated, and inclusive lives possible."

More information on how you can help here.

Parents push for state laws on autism treatment coverage

Parents press states for autism insurance laws

By CARLA K. JOHNSON – 2 hours ago

CHICAGO (AP) — In Washington state, Reza and Arzu Forough pay more than $1,000 a week for behavior therapy for their 12-year-old autistic son.

In Indiana, Sean and Michele Trivedi get the same type of therapy for their 11-year-old daughter. But they pay $3,000 a year and their health insurance covers the rest.

Two families. Two states. Big difference in out-of-pocket costs.

If autism advocates get their way, more states will follow Indiana's lead by requiring health insurers to cover intensive and costly behavior therapy for autism.

In the past two years, six states — Texas, Pennsylvania, Arizona, Florida, South Carolina, Louisiana — passed laws requiring such coverage, costing in some cases up to $50,000 a year per child.

The powerful advocacy group Autism Speaks has endorsed bills in New Jersey, Virginia and Michigan and is targeting at least 10 more states in 2009, including New York, California and Ohio.

Other states, including Illinois, have similar bills in the works but aren't working directly with Autism Speaks.

"This is the hottest trend in mandates we've seen in a long time," said J.P. Wieske, a lobbyist for an insurance coalition that argues that these state requirements drive up insurance costs for everyone. "It is hard to fight them."

For lawmakers, voting against these measures means voting against parents who are struggling to do the best for their children.

Parents tell moving stories about how behavior therapy works better than anything they've tried. In two states, bills got nicknames like "Steven's Law" and "Ryan's Law," so voting against them was tough.

Arzu Forough of Kirkland, Wash., who is pushing a bill in her state, credits behavior therapy for teaching her son Shayan, at age 3, to make a sound to ask for a drink of water. Now 12, he is learning to converse about his favorite food and music, and to talk about his frustrations rather than throw tantrums.

Trained therapists, using principles of applied behavior analysis (ABA), created a system of rewards to teach Shayan these skills. As a preschooler, he got a piece of cheese when he said "bubba" for water. Now a therapist rewards him with tokens when he responds in conversation. He uses the tokens to "buy" privileges like going for a car ride.

Shayan's improvements are a welcome relief to his mother, who once called for police help with her out-of-control son while she was driving.

"I pulled over to the side of the road," she said. "I had to call the police to drive behind me so I could drive safely home."

The Foroughs have health insurance, but it doesn't cover Shayan's therapy. Although they both work full time, they must live rent-free with her elderly mother to be able to afford his treatment.

Meanwhile, the Trivedi family of the Indianapolis suburb of Carmel, get 25 hours a week of behavior therapy for 11-year-old Ellie. They contribute co-pays and a deductible, totaling about $3,000. Insurance pays the rest, about $47,000 a year.

Michele Trivedi is an autism activist. She fought for years after a vaguely worded 2001 Indiana law required coverage but insurers still refused to pay for ABA. Finally in 2006, she helped convince the state's insurance commissioner to issue a bulletin spelling out what was expected of insurers.

"It's no longer acceptable that blatant discrimination against people with autism occur," Trivedi said.

Autism is a range of disorders that hinder the ability to communicate and interact. Most doctors believe there is no cure. An estimated 1 in 150 American children are diagnosed with it.

Supporters say behavior therapy has decades of research behind it and can save money in the long run by keeping people out of institutions. Researchers agree, but say much remains unknown about which therapy works best for autistic kids, whether long-term gains can be claimed, and whether it works with older children.

[FULL STORY]

Parents press for insurance coverage of autism treatments

POTOMAC FALLS, Virginia (CNN) -- Parents of children with autism often say it's like being on a roller coaster 24 hours a day. And the ticket for the ride is jaw-droppingly expensive.

The monthly cost of Ethan Nunez's autism therapies is more than his family's income, says his mom, Carol.

A family's lifetime costs for caring for a child with autism can reach as high as $5 million, according to the Autism Society of America. Each month, parents report they pay thousands of dollars for treatment and therapy. And in most cases, insurance, even good insurance, won't cover all of the fees.

Many families are triple-mortgaging their homes, taking second and third jobs, even living with other family members, just so they can provide the care their children so desperately need. Some even have to choose between their child's development and keeping their homes.

For Carol and Rick Nunez of Potomac Falls, Virginia, the stack of bills piled up on the dining room table is a brutal reminder of their reality. The Nunezes, parents of two boys, were introduced to autism when their younger son, Ethan, was found to have the condition two years ago.

[FULL STORY]

Autism Treatments and Poverty

Tax and Public Benefit Eligibility Reforms Needed to Help Families Affected By Autism Avoid Poverty

Today is Blog Action Day. Bloggers worldwide have united to blog about poverty. Many families affected by autism are currently facing poverty. Many more families are only a few paychecks away from financial ruin. I am hopeful that lawmakers and policymakers will read this post and make some changes to both public benefit eligibility criteria and tax laws. Families of children who have autism should be able to both obtain treatment necessary to improve their children’s lives and meet their other financial obligations. Parents should not have to choose between helping their children thrive and keeping a roof over their heads.

Autism treatment is expensive. The cost of ABA, speech therapy, occupational therapy and other therapies, interventions and equipment used to improve the functioning and quality of life of people who have autism typically costs thousands of dollars. In fact, the cost of intensive autism treatment could easily exceed a typical family’s annual housing, transportation and food costs combined.

Not surprisingly, many families affected by autism cannot afford to provide the treatments their children need. Overwhelming autism treatment costs combined with gaps in health insurance coverage lead some families of children who have autism to refinance mortgages, sell cars, deplete savings, make hardship withdrawals from 401ks and file for bankruptcy. University of Missouri researcher Deanna Sharpe reported cases of families skipping meals in order afford autism treatment.

[FULL STORY AT AUTISM ASSISTANCE BLOG]