Autism Legislation: What It Means for Your Child | BusinessWest

Autism Legislation: What It Means for Your Child | BusinessWest

Imagine this: an issue so big that when the governor signs a much-anticipated bill into law so many parents and families want to view the historic event that the signing has to take place at Fenway Park in Boston, instead of the State House, to accommodate the crowd.

Well, that’s exactly what happened on August 3, 2010 when Gov. Deval Patrick signed House Bill 4935 (an Act Relative to Insurance Coverage for Autism Spectrum Disorder, or ARICA) into law. As the crowd cheered, Massachusetts, finally having recognized the unfair and unreasonable burden imposed on families with children diagnosed with autism, became the 23rd state to pass such legislation.

Effective Jan. 1, 2011, private health-insurance plans, employees and retirees under the state plan, hospital service plans, and HMOs are now required to provide coverage of evidence-based, medically necessary autism therapies for diagnosed persons of all ages.

Insurance Coverage for ABA Services - Lovaas Blog - ABA Treatment for Children with Autism - Lovaas

Insurance Coverage for ABA Services - Lovaas Blog - ABA Treatment for Children with Autism - Lovaas

The small subgroup of families that even have ABA services included in their health insurance plans are now finding out that the only ABA services authorized require 100% implementation by licensed clinicians. Now as a licensed clinical psychologist myself, I know that it is unrealistic for me to be present for every hour of a child's intervention. Not only is it cost-prohibitive for a licensed provider to be present for every hour of ABA intervention, it isn't evidence-based practice! The data on intensive ABA programs has historically relied on the undergraduate student implementers of the intervention, not licensed professionals.

Arizona bill would allow health insurers to cut coverage

Arizona bill would allow health insurers to cut coverage

If insurers didn't have to cover cancer drugs or autism treatments or postnatal care, would they?

Arizonans may find out if a bill that won approval in the House late Wednesday becomes law.

The measure, Senate Bill 1593, would allow out-of-state companies to write health-insurance policies in Arizona. Those companies could have a competitive advantage if they're based in a state with few or no mandates on coverage. So, to give Arizona insurers a level playing field, lawmakers on Wednesday added a controversial amendment that would waive Arizona's 32 insurance mandates, which require insurers to cover a host of treatments and services.

Read more: http://www.azcentral.com/arizonarepublic/news/articles/2011/04/14/20110414xgr-mandates0414.html#ixzz1Jb7Hvcu6

Autism Diagnoses Bring Slew of Costs for Families | PBS NewsHour | April 13, 2011 | PBS

Autism Diagnoses Bring Slew of Costs for Families | PBS NewsHour | April 13, 2011 | PBS

Autism and Insurance: a Push for Coverage

For those parents, unlike Henderson, whose children need more therapy and treatment than the school or state provides, insurance is the next step -- but it too is often little help. Many insurance plans exclude autism treatment or refuse to cover behavioral therapy because they say it is an educational, rather than a medical, treatment.

Recently, however, the insurance situation has been changing. In the past three years, the advocacy group Autism Speaks has coordinated a push to get states to pass laws mandating that insurance companies cover autism treatment.

"Our community had gone for far too long at the mercy of insurance companies who used autism as the basis of denial for meaningful, necessary, evidence-based interventions," says Peter Bell, executive vice president for programs and services at Autism Speaks.

The organization's push is working: In 2006, only Indiana had such a law in place. Today, 25 states do.

"Children are receiving treatments, making tremendous progress and are often able to transition into a school environment with less support," Bell says. "This is an investment in the future."

In Massachusetts, Debe Needham Chamberlain has seen that change firsthand. She and her husband, both special education teachers, paid out-of-pocket for their son T.J.'s $150-per-session occupational therapy for three years and worked extra jobs to make the money. The bill mandating autism coverage was signed into law in last summer, and just recently, for the first time, T.J. was able to see the occupational therapist with only a co-pay.

"This is such a godsend," Needham Chamberlain says. T.J. was lucky to be able to attend school in the district where his mother teaches, which offers ABA therapy in school, but the district they live in does not. "People mortgage their houses so that their children could get services," she says. Now, with the new law, they are moving T.J. back to his home school district, and insurance will cover out-of-school ABA therapy.

Others, particularly insurers, believe that the laws are a mistake. Susan Pisano, vice president of communications for the insurers group America's Health Insurance Plans, says that AHIP generally believes that legislative mandates are a bad way to structure benefit plans -- not just for autism but for all conditions.

"The cumulative impact of thousands of mandates across the country has been to raise the cost of coverage -- in some cases beyond what small employers can afford," she says.

And, she says, many of the therapies mandated in some of the new state laws are educational rather than medical -- and so should be provided by school districts.

But Bell, of Autism Speaks, disagrees.

"Autism is a diagnosis you receive from a medical professional," he says. "School and teachers do not give an autism diagnosis."

More ...

ABA or NOT ABA, Is the question effectiveness or cost?

Autism's $100,000 question - KansasCity.com

Now a battle is raging in some areas, including Minnesota, about whether taxpayers and health insurers should be forced to pay for the treatment, known as Applied Behavior Analysis (ABA).

At a time when autism diagnoses are soaring nationwide, many parents and professionals insist that ABA therapy is the best way to help these children live normal lives.

Eric Larsson, a Minneapolis psychologist and leading advocate, says ABA is more than just a treatment - it's a way to rescue children "from the ravages of autism." He tells parents that nearly half of children can recover if they start ABA soon enough.

"They're coming to us because they want to cure their child," he said. "Just like you or I would do if we had cancer."

But other autism experts say the benefits of ABA treatment have been blown out of proportion. They say there is scarce evidence that it's really better than less costly alternatives.

"A lot of claims out there are inflated," said Barbara Luskin, a psychologist with the Autism Society of Minnesota. "Autism is a difference in the way your brain is. You're not going to cure it."

This year, for the third year in a row, the Minnesota Legislature is debating whether to require the state's health insurance plans to cover ABA treatment for autism, a speech and behavior disorder that is said to affect 1 in 110 children nationally.

More than 20 states have adopted such mandates since 2007, says Lorri Unumb of Autism Speaks, a national advocacy group.

Ultimately, she hopes it will become the law of the land as part of national health reform.

"There is no controversy at all about whether ABA is the gold-standard treatment," says Unumb, a lawyer and senior policy adviser. "The only discussion is whether we can afford it."

Read more: http://www.kansascity.com/2011/04/12/2794461/autisms-100000-question.html#ixzz1JK0HLS6J

Autism Treatment Double Standards

Kids with autism face double standard

Officially, Minnesota doesn't pay for an intensive type of autism therapy. Yet it has - but only for some families.

Two years ago, a single mother in the Twin Cities asked the state Medicaid program to pay for an intensive type of autism therapy for her 2-year-old son.

She was turned down. State officials said the treatment -- known as Applied Behavior Analysis, or ABA -- is "not now, and never has been,'' a covered service.

It turns out, though, that's not the whole story.

For years, Minnesota taxpayers have been subsidizing that same treatment, which can cost up to $100,000 a year, for middle-class and even wealthy families, including the children of lawyers and business executives.

Last year, the state Medicaid program spent $13.5 million on ABA treatments for 379 children -- most of them above the poverty line, according to state records. Those families have been able to tap into Medicaid through a special disability category that has no limit on family income.

Yet the state tells some of its poorest children, who are in Medicaid managed-care plans, that ABA is simply not an option.

Read more at http://www.startribune.com/lifestyle/wellness/119121669.html

New New Hampshire Majority Seeks to REPEAL Autism Insurance Law

Bill repeals insurance for autism treatment

It was only last year that New Hampshire required insurance companies to provide support for early treatment of autistic children.

Now the new majority seeks to end that. HB 309 would end mandatory insurance for all kinds of early interventions.

I’m 55 years old, only recently diagnosed with Asperger syndrome – a form of high-functioning autism. I’m married and a former partner of a major consultancy – all without such treatment.

Lack of social skills exposed me to sexual abuse as a child, caused several episodes of extended insomnia and isolated me socially until I did learn how to practice social skills in my teens.

Denying autistic kids the skill to connect is equally cruel. It is also fiscally irresponsible. Early treatment is costly, but much less than 50 or more years of institutionalization.

I also hope the political sponsors of HB 309 will recognize that this is political suicide. Autism affects one in 70 families. And we will speak out. Forcefully.

This demonstrates most clearly why universal coverage is needed now. So that millions of our children will not grow up in isolation, will be less vulnerable to abuse and bullying and will get their shot at a life defined by their abilities rather than their limitations.

The House Commerce and Consumer Affairs Committee hearing is today at 1:15 p.m. in Room 302 of the Legislative Office Building. Let’s speak out and help Rep. John Hunt, R-Rindge, and his colleagues not to make this big mistake.

Peter Luttik

Nashua

Source: http://www.nashuatelegraph.com/opinionletters/910000-263/bill-repeals-insurance-for-autism-treatment.html

LOS ANGELES — The families of seven autistic children have sued a regional medical center for discontinuing a type of treatment that they say helped

LOS ANGELES — The families of seven autistic children have sued a regional medical center for discontinuing a type of treatment that they say helped

In the lawsuit filed in a Los Angeles Superior Court Thursday, lawyers for the children's families said the treatment was provided by Eastern Los Angeles Regional Center until Aug. 1.

"These kids, if they get this treatment now, are far less likely to be dependent in the future," said family lawyer Laura Faer. "They'll be able to achieve dreams and lead independent lives."

The medical center's executive director Gloria Wong said the cuts are among many being made as a result of a $384 million budget cut to the state's 21 regional centers.

The treatment in question — called the Developmental, Individual Difference, Relationship-based Model — provides children with several hours of one-on-one care each week. Parents praise the treatment for providing close supervision of their verbally and cognitively impaired children, while teaching proper nonviolent behaviors in social settings.

In the face of budget cuts, a statewide stakeholder group that included advocacy groups and providers decided the treatment was among one of 25 to target for cuts, said Nancy Lungren, spokeswoman for the California Department of Developmental Services.

Wong said the stakeholder group decided that the treatment was a non-medical therapy and experimental, but the lawsuit contends it "is not experimental, nor is it a therapy of any kind.

[FULL ARTICLE]

Medicare covers $8k Dynavox, not $300 iPhone

OK, let's see. Medicare will cover an $8,000 talking device, but not a $300, because you might play games on it. It sure seems like someone might be missing the point.

For voiceless, gadgets speak but insurers balk

By Ashlee Vance
THE NEW YORK TIMES

SAN FRANCISCO — Kara Lynn has amyotrophic lateral sclerosis, which
has attacked the muscles around her mouth and throat, removing her
ability to speak. A couple of years ago, she spent more than $8,000 to
buy a computer, approved by Medicare, that turns typed words into
speech that her family, friends and doctors can hear.

Under government insurance requirements, the maker of the PC,
which ran Microsoft Windows software, had to block any nonspeech
functions, such as sending e-mail or browsing the Web.

Dismayed by the PC's limitations and clunky design, Lynn turned to
a $300 iPhone 3G from Apple running $150 text-to-speech software. Lynn,
who is 48 and lives in Poughkeepsie, N.Y., said it worked better and
let her "wear her voice" around her neck while snuggling with her
5-year-old son, Aiden, who has Down syndrome.

Medicare and private health insurers decline to cover devices such
as iPhones and netbook PCs that can help people with speech
impairments, despite their usefulness and lower cost. Instead, public
and private insurers say that if Lynn and others like her want
insurance to pay, they must spend 10 to 20 times as much for dedicated,
proprietary devices that can do far less.

The logic: Insurance is supposed to cover medical devices, and
smartphones and PCs can be used for nonmedical purposes, such as
playing video games or browsing the Web.

"We would not cover the iPhones and netbooks with
speech-generating software capabilities because they are useful in the
absence of an illness or injury," said Peter Ashkenaz, a spokesman for
the U.S. Centers for Medicare and Medicaid Services. Private insurers
tend to follow the government's lead.

Two years ago, iPhones and netbooks barely existed, so it may not
be surprising that the industry has yet to consider their role as
medical devices.

[MORE]

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.

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]

US Government Bailout Plan = More Coverage for Autsim Treatments

While it doesn't seem to be in the news much, it sounds like one of the "sweeteners" added to the recent $700 Billion dollar bailout plan. I am sure that most lawmakers didn't even read this bill before it passed. It's a shame that this coverage had to be slipped in through the back door to get passed. Will this lead to more coverage for autism treatments? I will believe it when I see it.

• In addition to providing $700 billion to bail out Wall Street, the Emergency Economic Stabilization Act of 2008 contains the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 (the "Act"), which, for the first time, requires equal coverage of mental and physical illnesses in an employer's group health plan. The Act has been over a decade in the making and marks a significant shift in the coverage requirements for group health plans that offer coverage for mental health or substance use disorders. *
  
• Employers that provide coverage for mental health and substance use disorder benefits will no longer be able to provide less coverage for these benefits than they do for the treatment of medical and surgical benefits. The Act will make it easier for plan participants to obtain treatment for a wide range of conditions, including depression, autism, schizophrenia, eating disorders and alcohol and drug abuse. Only small employers and employers with group health plans that satisfy the cost exception shall be excluded from the Act's coverage. Therefore, employers may have to adjust their benefits to comply with the Act. Fortunately, employers will have more than 12 months to fully comply with the sweeping changes required by the Act. *
  

ABA Therapy Often NOT Covered by Insurance

TACOMA, Wash. – Grant Fulton is a busy boy.

Seated at a child-sized table in his family's Lacey living room, the 5-year-old kneads a ball of soft, claylike material. He talks about its colors, shapes and textures.

Laurie Waguespack, his therapist, subtly switches between play and learning. Her goal is to help Grant, who has autism, gain cognitive skills.

Waguespack grabs a deck of picture cards, and asks Grant to name the colors and shapes as she flips through them.

"Pentagon. Octagon. Diamond. Black. Circle. Rectangle. Yellow," says Grant, building speed as he identifies 34 of 35 cards correctly.

Eight months ago, says Denise Fulton, Grant's mother, it would have been difficult to get him to name shapes and colors. Two years ago, it would have been impossible. Grant has mastered this only through daily, step-by-step therapy administered by Waguespack and others.

"It's hard trying to rewire the brain," says Fulton.

It's also expensive, with in-home therapy costing anywhere from $15 to $25 per hour. None of it is covered by the family's health insurance plan.

[FULL STORY]