Hawaii Autism Insurance Bill

07-10-08 Genes From Middle East Families Yield Autism Clues

2008-07-18T21:48:00.000-07:00

Genes From Middle East Families Yield Autism Clues
Scientists Hope Findings Will Yield Clues to Mysterious Condition
By LAURAN NEERGAARD
AP Medical Writer
July 10, 2008

RSS WASHINGTON (AP) - Harvard researchers have discovered half a dozen new genes involved in autism that suggest the disorder strikes in a brain that can't properly form new connections.

(ABC News Photo Illustration)The findings also may help explain why intense education programs do help some autistic children - because certain genes that respond to experience weren't missing, they were just stuck in the "off" position.

"The circuits are there but you have to give it an extra push," said Dr. Gary Goldstein of the Kennedy Krieger Institute in Baltimore, which wasn't involved in the gene hunt but is well-known for its autism behavioral therapy.

The genetics suggest that "what we're doing makes sense when we work with these little kids -- and work and work and work -- and suddenly get through," he said.

But the study's bigger message is that autism is too strikingly individual to envision an easy gene test for it. Instead, patients are turning out to have a wide variety, almost a custom set, of gene defects.

Related
U.S. Scientists Eye Unproven Autism TreatmentCommon Chemicals May Have Autism LinkFamilies Seek $$ for Autism-Vaccine Link"Almost every kid with autism has their own particular cause of it," said Dr. Christopher Walsh, chief of genetics at Children's Hospital Boston, who led the research published in Friday's edition of the journal Science.

Autism spectrum disorders include a range of poorly understood brain conditions, from the mild Asperger's syndrome to more severe autism characterized by poor social interaction, impaired communication and repetitious behaviors.

It's clear that genes play a big role in autism, from studies of twins and families with multiple affected children. But so far, the genetic cause is known for only about 15 percent of autism cases, Walsh said.

So Walsh's team took a new tack. They turned to the Middle East, a part of the world with large families and a tendency for cousins to marry, characteristics that increase the odds of finding rare genes. They recruited 88 families with cousin marriages and a high incidence of autism, from Jordan, Saudi Arabia, Kuwait, Oman, Pakistan, Qatar, Turkey and the United Arab Emirates. They compared the DNA of family members to search for what are called recessive mutations -- where mom and dad can be healthy carriers of a gene defect but a child who inherits that defect from both parents gets sick.

In some of the families, they found large chunks of missing DNA regions that followed that recessive rule. The missing regions varied among families, but they affected at least six genes that play a role in autism.

Here's why this matters: All the genes seem to be part of a network involved in a basic foundation of learning -- how neurons respond to new experiences by forming connections between each other, called synapses.

Related
WATCH: Child Autism's Effect on ParentsInsurance vs. Autism: The Problem of Costly CareDebate Rages Anew on Vaccine-Autism LinkIn the first year or two of life -- when autism symptoms appear -- synapses rapidly form and mature, and unnecessary ones are "pruned" back. In other words, a baby's brain is literally being shaped by its first experiences so that it is structurally able to perform learning and other functions of later life.

"This paper points to problems specifically in the way that experience sculpts the developing brain," explained Dr. Thomas Insel, director of the National Institute of Mental Health, which helped fund the work.

Some earlier research had pointed to the same underlying problem, so these newly found genes "join a growing list to suggest that autism is a synaptic disorder," he said.

If that sounds discouraging, here's the good news: The missing DNA didn't always translate into missing genes. Instead what usually was missing were the on/off switches for these autism-related genes. Essentially, some genes were asleep instead of doing their synapse work.

"I find that hopeful" because "there are ways that are being discovered to activate genes," Walsh said. "This might be an unanticipated way of developing therapies in the long term for autism: Identifying these kids where all the right genes are present, just not turned on in the right way."

At Kennedy Krieger, Goldstein thinks the work may provide a gene-level explanation for why some children already are helped by intense therapy.

"We have trouble getting through to these children, but with repeated stimulation we can do it," he said. "These are circuits that have an ability not so much to recover but to work around the problem."

07-06-08 LA Times Who Pays for Autism Treatment?

2008-07-18T21:45:00.000-07:00

http://www.latimes.com/business/la-fi-autism6-2008jul06,0,1685457.story

From the Los Angeles Times
Who pays for autism treatment?
An explosion in the number of children diagnosed has parents, insurers and state and private institutions battling over coverage. The case of Andrew Arce is a window into the conflict.
By Lisa Girion
Los Angeles Times Staff Writer

July 6, 2008

By the time Andrew Arce was 15 months old, his parents suspected he was autistic.

He refused to cuddle, flapped his arms and stared into space a lot. On occasion, he picked at his nose until it drew blood and, with it, smeared the walls of the family's Pasadena town house.

It was nearly a year, Guillermo Arce said, before Kaiser Permanente, the family's healthcare provider, confirmed their fears. The diagnosis wasn't much help, though. Kaiser refused to provide most of the treatment that specialists said Andrew needed -- until the state ordered it to in April.

Last month, Andrew, now 2 1/2 years old, began getting the disputed treatment -- including individual training in how to eat and play.

"He is still young," his father said. "He will always be autistic, but maybe he could be fully functioning."

Guillermo Arce's battle is a window on a political and legal struggle playing out across the country amid a surge in diagnoses of autism. Parents, insurers and the government are tussling over who is going to pay for treatment.

"It's health plans versus schools versus regional centers," said Diane Anand, executive director of the Lanterman Regional Center in Los Angeles, one of 21 state-funded centers that serve the developmentally disabled. "It's going to take years to sort this out."

Autism is a disorder that impairs communication and socialization and is often marked by repetitive behaviors such as rocking and head banging. Although there are many theories, its cause remains unknown. There is no cure.

Treatment is mainly behavioral training, teaching such skills as dressing. There is wide agreement that the sooner treatment begins, the more effective it is, and that early intervention pays off in the long run by developing self-reliance.

But it costs money -- as much as $70,000 a year per child. The state spent $320 million last year, up from $50 million a decade earlier. Nationwide, the tab is $90 billion annually, a figure expected to double in a decade.

Parents, in growing numbers, say insurers aren't doing their part. Proposed class-action lawsuits -- including one filed in April by Arce against Kaiser and another filed late last month against Anthem Blue Cross -- allege that California's largest health plans are shirking their duties to autistic members.

Health plans say they cover medically necessary care. The problem, they say, is that parents ask for treatment that insurers deem experimental, or for basic skills training that has long been provided by state-funded regional centers and schools.

"What we're concerned about is we're seeing a shift of the state's responsibilities over to the health plans," said Chris Ohman, president of the California Assn. of Health Plans. "To just say 'We need to have health plans cover all treatments' could have unintended consequences."

But Kristin Jacobson of Autism Speaks California contends that the healthcare industry has "washed its hands of autism entirely." Parents of children who don't qualify for public programs "bear the full burden of the treatment costs and pay their premiums," she said. "They aren't asking for a free ride. They are paying premiums."

The significantly impaired -- about 1 in 5 autistic patients -- qualify for help from the regional centers, which currently serve about 37,000 people with the disorder. As the fastest-growing diagnosis at the centers, accounting for 60% of new intakes, autism adds 11 clients a day.

California's mental health parity law, enacted in 2000, was supposed to settle the issue, requiring insurers to cover autism and other behavioral disorders the same way they cover any medical condition. But critics say insurers are failing to follow the law.

Dr. Benjamin Chu, head of Kaiser in Southern California, said the law requires health plans to cover autism but not particular treatments. So, he said, Kaiser covers what it deems medically necessary.

Kaiser and other insurers say conflicts arise when parents expect them to cover services that schools and regional centers should provide, such as training to change self-destructive behaviors.

"Whether a health plan is responsible or not is a gray zone," Chu said.

But critics contend that health plans are looking for any excuse to avoid paying for expensive treatment.

"Kaiser is really just illegally dumping patients again," said Scott Glovsky, a Pasadena lawyer representing Andrew Arce in the Kaiser suit. "But instead of dumping poor, homeless people on skid row, they are dumping autistic children on the taxpayers."

A state commission report issued in September gives health plans low marks for autism care. It concludes that coverage for medical, behavioral and psychotherapeutic services "is limited, inconsistent or excluded altogether."

State-sanctioned independent medical reviews have concluded that insurers wrongly denied care to autistic patients in dozens of individual cases, but regulators have not issued a single citation.

With complaints on the rise, however, California's Department of Managed Health Care is now looking into the matter, Director Cindy Ehnes said.

Help can't come soon enough for many parents. Already exhausted by the daily struggle to care for their children, they must fight insurers to get the therapy that their own physicians, experts and government authorities say their kids need. In the end, many spend their own money and taking on debt.

Shelley Bell said that she and her husband have spent about $350,000 on treatments for their autistic son, Jason, 11. The family has had four insurance carriers over the years. Bell said she had to battle every one and usually lost.

"A lot of parents just don't have the fight in them," Bell said. "It's almost like a full-time job corresponding with these insurance companies: the follow-up letters, the denial, the appeal. The word among autistic families is the insurance companies turn down everything and wait to see if you are going to appeal."

The Bells refinanced their Westminster home, using the money to pay for treatments. But, Bell said, they still owe about $80,000.

"As much as I hate this debt, it's been great to see the progress," she said. "My son is not fully integrated. But he talks. He's social. He's funny. It's been worth every penny."

Pending lawsuits could change the way insurers deal with their autistic members.

A spokeswoman for WellPoint Inc., parent of Anthem Blue Cross, declined to comment on the suit against the insurer. In general, Shannon Troughton said, Blue Cross covers care it deems medically necessary, including screenings, medications and some therapies for autism.

In Andrew Arce's case, specialists concluded that he needed an array of therapies, including 20 hours a week of applied behavior analysis. The intensive, one-on-one therapy breaks down tasks such as eating into small steps and drills each until mastered.

Several insurers -- Anthem Blue Cross, Blue Shield, Health Net and PacifiCare -- decline to cover the treatment, saying it is unproven.

But advocates say this is a misreading of the medical literature. The U.S. surgeon general concluded in 1999 that it was good medicine, saying 30 years "of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning and appropriate social behavior."

Kaiser also declines to cover the therapy, but on the grounds that it is educational and not medical. Kaiser is reviewing its policy in light of the state's order that it provide the therapy for Andrew Arce.

lisa.girion@latimes.com

05-05-08 Autism Legislation - Thank you!!!

2008-07-18T21:40:00.000-07:00

Hi, everyone!

As most of you probably already know, the autism insurance bills/resolutions did fairly well. Here's what happened...

If you recall, we had 4 different measures in the legislature:
1. HB2727 (Dylan's Law)
2. SB2532 (Senate companion for Dylan's Law)
3. HCR62 (Auditor's review of Dylan's Law)
4. SCR196 (Auditor's review, Senate version)

HB2727 was turned into a Task Force (all the mandates were taken out). This bill passed the House, Senate, and the Conference Committee. The Governor's signature is needed for this one.
http://www.capitol.hawaii.gov/session2008/Bills/HB2727_CD1_.htm

SB2532 was at first deferred (pending the auditor's review), but was then revived and amended for SCR196. They took out the new definition for "medically necessary" so that it wouldn't conflict with the current definition in Hawaii's statute. All the other insurance mandates are still in the bill. This bill did not pass through the legislature, only the Senate Health Committee.
http://www.capitol.hawaii.gov/session2008/Bills/SB2532_SD1_.pdf

HCR62 was amended and is now something completely different. They didn't need this one to pass since SCR196 passed through.

SCR196 passed the House and Senate, with SB2532 as the basis for the auditor's review. This one doesn't need the Governor's signature.
http://www.capitol.hawaii.gov/session2008/Bills/SCR196_SD1_.pdf

What happens now:

The auditor's review will be done - this is needed before any insurance mandates in Hawaii. The State Auditor's office will look at SB2532 for this study. Hopefully, the auditor's study will come back favorable and the premiums will not be found to increase very much. This report must be completed 20 days prior to the start of the 2009 session (in January 2009).

The Task Force will look at Hawaii's capacity with regard to autism services, and their report also must be completed 20 days prior to the start of the 2009 session.

Thank you everyone, for all of your support!!! See you at the Autism Walk on June 14th at Magic Island!!!! www.walknowforautism.org/hawaii

Mahalo!
Kalma

04-18-08 SCR196 (Senate version of Dylans Law) will be heard!! - Send in Testimony!

2008-07-18T21:38:00.000-07:00

Aloha, everyone!

SCR196, the Senate version of the resolution for the auditor's study of Dylan's Law, will be heard on Monday, April 21st. at 1 p.m. in room 229 by the House Committee on Health and the Committee on Consumer Protection and Commerce. This will probably be the final hearing for this very important resolution. Remember, we NEED this resolution (and HCR62) to pass.

Please send in testimony in SUPPORT:
Submit testimony in ONE of the following ways:

PAPER: 5 copies (including an original) to Room 436 in the State Capitol;

FAX: For comments less than 5 pages in length, transmit to 586-6051 (Oahu) or 1-800-535-3859 (Neighbor Islands); or

EMAIL: For comments less than 5 pages in length, transmit to HLTtestimony@Capitol.hawaii.gov.

We are almost at the end of the legislative session!! Thank you again for all of your help!!!!

Mahalo!!

04-16-08 Dylan's Law, HCR 62 will be heard this Friday 1:15

2008-07-18T21:35:00.000-07:00

Aloha, everyone!

The resolution for Dylan's Law, HCR 62 will be heard this Friday 1:15 by the Senate Health Committee and the Commerce, Consumer Protection, and Affordable Housing Committee. You can send in your previous testimony for this resolution, just change the names of the committees and committee chairs and co-chairs. Please remember, that we NEED this resolution to pass in order get insurance coverage for autism. This resolution requires the state auditor to conduct a study of Dylan's Law.

Please send in testimony to Chair Senator David Ige, Vice-Chair Senator Carol Fukunaga of the Senate Health Committee, and Chair Senator Russell Kokobun and Vice-Chair Senator David Ige of the Commerce, Consumer Protection, and Affordable Housing Committee.

o In person: 1 copy of their testimony to the committee clerk, Room 215, State Capitol.

o By fax: Testimony may be faxed if less than 5 pages in length, to the Senate Sergeant-At-Arms Office at 586-6659 or 1-800-586-6659 (toll free for neighbor islands), at least 24 hours prior to the hearing. When faxing, please indicate to which committee the testimony is being submitted and the date and time of the hearing.

o By Email: Testimony may be emailed if less than 5 pages in length, to testimony@capitol.hawaii.gov. Please indicate to which committee the testimony is being submitted and the date and time of the hearing. Email sent to individual offices or any other Senate office will not be accepted.

See the agenda below (we are 4th on the agenda).

Let me know if you have any questions.
Thank you so much!!!!!

03-13-08 The Audit Resolution for Dylan's Law Passes!!

2008-07-18T21:30:00.000-07:00

Aloha, everyone!!!

Thank you to all of you who submitted testimony for today's hearing for HCR62, the audit resolution for the autism insurance bill. The reso was passed by the House Consumer Protection and Commerce Committee!!!!! It's on it's way to the House Legislative Management Committee. Please contact Representative Michael Magaoay at 586-6380 (chair) and Representative James Tokioka 586-6270 (vice-chair) and request a hearing for HCR62.

Also, PLEASE contact the Chair, Senator David Ige (586-6230 senige@capitol.hawaii.gov) and the rest of the Senate Committee on Health and tell them you support HB2727, Dylan's Law, and to schedule a hearing!!!!
The other members are:
Vice-Chair, Senator Carol Fukunaga 586-6890 senfukunaga@capitol.hawaii.gov
Senator Rosalyn Baker 586-6070 senbaker@capitol.hawaii.gov
Senator Ron Menor 586-6740 senmenor@capitol.hawaii.gov
Senator Paul Whalen 586-9385 senwhalen@capitol.hawaii.gov

Thanks!!

Dylan's Law HB2727 is going to the House floor for a vote tomorrow (Tuesday, 3/4/08)

2008-07-18T21:11:00.000-07:00

Aloha, everyone!

Dylan's Law HB2727 is going to the House floor for a vote tomorrow (Tuesday, 3/4/08). Please send an email to:

reps@capitol.hawaii.gov

and allrepspermanentstaff@capitol.hawaii.gov

Tell them to vote YES for HB2727!!

Mahalo!!

02-29-08, Dylan's Law Passes House Finance Committee with Amendments

2008-07-18T21:01:00.000-07:00

Aloha, everyone!

Thank you so much for your continued support of HB2727 (Dylan's Law). As you probably know, the bill passed the House Finance Committee with amendments the other night. I have been told that the amendments were "non-substantive". Next week (probably Tuesday) the bill will go to the floor of the House for a vote. If all goes well, the bill will cross over into the Senate. The first stop will most likely be the Senate Health Committee - which already heard and deferred the senate version of Dylan's Law. This means we will need to call, call, and call Chair David Ige's office again (as well as the rest of the committee).

Stay tuned!!!

HB 2727, Dylan's Law - Send in Testimony, Sample letter

2008-02-27T03:07:00.000-08:00

February 26, 2008

Representative Marcus Oshiro

Chair, House Committee on Finance

Representative Marilyn Lee
Vice-Chair, House Committee on Finance

Re: Testimony in STRONG SUPPORT for HB2727 HD1, Relating to Health
Insurance Coverage for Autism Spectrum Disorders

House Committee on Finance, February 27, 2008, Room 308, 2:30 p.m.

Dear Chair Oshiro and Vice-Chair Lee, and the members of the Finance Committee:

I am writing to express my strong support for House Bill 2727 HD1, otherwise known as Dylan's Law. This important bill mandates health insurance coverage for autism spectrum disorders.

Children with autism often have co-occurring conditions, such as behavioral problems, speech disorders, anxiety, muscle or joint problems, ear infections, gastro-intestinal problems, vision and hearing problems, and allergies. The wide range of co-occurring problems leads to their need for services from trained medical professionals and for a full-range of therapies.

Unfortunately, children with autism are often denied coverage for necessary therapies by private health insurance companies. The therapies frequently denied include speech therapy, occupational therapy, and intensive behavioral therapy, such as Applied Behavior Analysis (ABA). Applied Behavior Analysis (ABA) is a data-based intervention for autism that has a decades-long record of efficacy. ABA therapy has shown to increase educational placements and increased IQ levels of those with autism. This therapy is recognized by the U.S. Surgeon General's 2001 Report on Mental Health as being widely accepted as the effective treatment for autism. But insurers frequently deny ABA as a benefit, and families are often forced to pay for these costly services out of pocket
Please pass HB2727 HD1. Thank you very much for your time. If you have any questions, please feel free to contact me at (your phone) and (your email).

Sincerely,

HB 2727 Dylan's Law - Recap + Hearing in Finance Committee Scheduled!!

2008-02-26T00:55:00.000-08:00

An audit was scheduled for HB2727

The audit was needed to happen in order for the insurance bill to go through. The hearing was scheduled on Wednesday, February 19, 2008 at 9 a.m. in room 329. It's for the House Health Committee so address it to Rep. Josh Green and Rep. John Mizuno again.

It passed!!

We are so excited.

Now there is a hearing scheduled in the Finance Committee on Wednesday, February 27, 2008 at 2:30 p.m. in house conference room 308.

The hearing has been SCHEDULED!!! Wednesday, February 27, 2008, 2:30 p.m., Room 309
Submit testimony in support of Dylan's Law HB2727 in ONE of the following ways:

1) PAPER: 2 copies to Room 308 in the State Capitol. It is required that the copies be on one side of an 8½ " X 11" sheet; or

2) FAX: For comments less than 5 pages in length, transmit to 586-6001 (Oahu) or
1-800-535-3859 (Neighbor Islands); or

In the subject line of your written testimony, please include: HB2727, Wednesday February 27, 2008, 2:30 p.m., Room 308, Agenda #5

3) EMAIL: For comments less than 5 pages in length, transmit to
FINtestimony@Capitol.hawaii.gov. Please include the HB2727, Wednesday
February 27, 2008, Agenda #5 in the Subject line of the email

Address the testimony to Representative Marcus Oshiro, Chair and Representative Marilyn Lee, Vice Chair.

This is our last chance. It will either die here or remain alive and move on. Let's pull together and do this!!

Thank you!!

HB2727 Dylan's Law - Passed the House Health Committee!!

2008-02-10T22:27:00.000-08:00

Aloha!

We are one step closer to Dylan's Law being a reality! It passed the House Health Committee on February 6, 2008!!! The next committee in the House is the Consumer Protection & Commerce Committee!

Chair and Vice-Chair of the CPC Committee are:
Robert N. Herkes, Chair Consumer Protection & Commerce Committee
phone 808-586-8400; fax 808-586-8404
E-mail repherkes@Capitol.hawaii.gov

Angus L.K. McKelvey, Vice-Chair Consumer Protection & Commerce
Committee
phone 808-586-6160; fax 808-586-6161
E-mail repmckelvey@Capitol.hawaii.gov

Please call or email the Chair of the House Consumer Protection and Commerce Committee and request a hearing for Dylan's Law HB2727. If you know anyone in his district, please ask them to call on our behalf. Our children's future depend on it!!

Robert N. Herkes
5th Representative District
Hawaii State Capitol, Room 320
415 South Beretania Street
Honolulu, HI 96813
phone 808-586-8400; fax 808-586-8404
From the Big Island, toll free 974-4000 + 68400
E-mail repherkes@Capitol.hawaii.gov

SB2532 Dylan's Law - Hearing AMAZING!!

2008-02-10T21:24:00.000-08:00

Aloha,
The hearing on Friday 2/8/08 was amazing!! There were six (6) parents that came, and gave testimony. I thought together we gave the committee members (Senator Ige and Baker) a complete picture of our lives, and what we face every day in the race to pull our children out of the grasps of Autism.

I thought each parent's testimony was incredible. I'm not going to mention their names, because I am not sure if they want to named. Below is a small summary of the testimonies.

One parent brought a wealth of statistic information that quantified the current ratio of 1 in 150 children that has autism. Those were incredible numbers. A parent spoke about the amount of progress that was seen in her child, and within a years time, and the enormous out of pocket cost associated with paying for her child's ABA therapy. Another parent spoke about the moral obligation that the state has to include Autism along with other currently medically covered treatments. Plus, the numbers of Autism surpasses Pediatric cancer, diabetes, and aids combined!!and these, and the treatments are all covered by insurance. Why is Autism excluded?

Sadly, the senate Health Committee deferred the measure. All is not lost. We still have the House bill 2727 that is still alive. Let's work hard to keep this bill alive.

SB2532 Dylan's Law - Hearing Scheduled This Friday - Testimony Needed!!

2008-02-06T02:57:00.000-08:00

Aloha,

Dylan's Law in the SENATE is being heard this Friday, February 8th, at 1:15 in room 016 of the State Capitol (Chamber Level).

Fax the testimony for Friday's hearing to the Senate Sergeant at Arms
at 586-6659. Include the following:
1. Attention the Senate Health Committee,
2. Date of the hearing 2-8-08
3. The time of the hearing 1:15 p.m.
4. Room number 016
5. Bill number SB2532

REMINDER also about tomorrow's hearing (2-6-08)in the House Health Committee
at 8 a.m. in room 329. Fax your testimony for HB2727, Dylan's Law to
the House Sergeant at Arms at 586-6051!!!!!

THE SENATE
THE TWENTY-FOURTH LEGISLATURE
REGULAR SESSION OF 2008

COMMITTEE ON HEALTH
Senator David Y. Ige, Chair
Senator Carol Fukunaga, Vice Chair

NOTICE OF HEARING

DATE:Friday, February 8, 2008
TIME:1:15 PM
PLACE:Conference Room 016
State Capitol
415 South Beretania Street

Hearing Scheduled Dylan's Law House Bill 2727

2008-02-05T00:12:00.000-08:00

This was a surprise to find out that a hearing is scheduled for Dylan's law House bill 2727!!sooner than not at all. It's scheduled for Wednesday February 6, 2008 8:00 a.m. in room 329 of the State Capitol Dylan's Law (HB 2727) is third on the agenda.

We need to send a flood testimony to let them know that we need this bill passed.

Please fax it to 586-6051 (Oahu) or 1-800-535-3859 (Neighbor Islands), or email it to HLTtestimony@Capitol.hawaii.gov.

Below is a sample letter. Please include personal stories or personal knowledge in your letters.

Sample letter (modify, cut and paste!!)

Your Name
Your Address
Your Phone Number
Date

Representative Josh Green, M.D.
Chair, House Committee on Health
Hawaii State Capitol, Room 327
415 South Beretania Street
Honolulu, Hawaii 96813

Representative John Mizuno
Vice-Chair, House Committee on Health
Hawaii State Capitol, Room 436
415 South Beretania Street
Honolulu, Hawaii 96813

Re: In strong support of Dylan's Law HB2727, Relating to Health Insurance Coverage for Autism Spectrum Disorders
House Committee on Health, February 6, 2008, 8 a.m., Room 329

Dear Chair Green, Vice-Chair Mizuno, and members of the House Health Committee:

I am writing to express my strong support of House Bill 2727, otherwise known as Dylan's Law. This bill mandates health insurance coverage for autism spectrum disorders.

Autism is a complex neurobiological disorder that currently affects 1 in 150 children, according to the Center for Disease Control. This disorder affects boys four times more likely than girls. Autism impairs a person's ability to communicate and relate to others, and is often associated with repetitive behaviors, poor eye contact, and rigidity in routines. Children with autism often have co-occurring conditions, such as behavioral problems, speech disorders, depression, anxiety, muscle or joint problems, ear infections, vision and hearing problems, and allergies. The wide range of co-occurring problems leads to their need for services from trained medical professionals and for a full-range of therapies. The therapies include speech therapy, occupational therapy, and intensive behavioral therapy, such as Applied Behavior Analysis (ABA), among others. With proper medical intervention and intensive therapies children with autism can improve to such an extent that they can enter mainstream classrooms unassisted.

Unfortunately, children with autism are often denied coverage for necessary therapies by private health insurance companies. One important therapy denied by insurers is Applied Behavior Analysis (ABA). ABA has a decades-long record of efficacy. It is a data-based intervention for autism that has over forty years of research behind it. In a 1987 study by Ivar Lovaas, the children who underwent early intensive ABA therapy achieved higher educational placement and increased IQ levels than those who did not. ABA is recognized by The U.S. Surgeon General's 2001 Report on Mental Health as the treatment that is widely accepted as being effective for autism, and the National Institute of Child Health and Human Development acknowledges that Applied Behavior Analysis is an effective treatment for autism. Although ABA is the single intervention most often sought by parents of children with autism, insurers frequently deny it as a benefit. As a result, families are often forced to pay for these costly services out of pocket.

Too many families of children with autism are deeply in debt as a result of the lack of insurance coverage for these necessary therapies. However, the cost of paying for the therapies out of pocket not only causes financial strain for the families, but it also causes heavy emotional distress. For many of these families, the stress is more than they can bear and many of the marriages end in divorce. But in spite of the burdens of autism on the insurance companies, the government, the families, and even on society as a whole, the most important point in this issue is the CHILD. Dylan's Law is about all children with autism who deserve to have a better quality of life.

I urge you to pass Dylan's Law House Bill 2727 and make insurance coverage for autism a reality. The children with autism in Hawaii deserve to have the opportunity to thrive.

Thank you for your consideration.

Sincerely,

Your name

Article

Autism Speaks. Arguments In Support of Private Insurance Coverage of Autism-Related Services

October 24, 2007

Contents

Page 4 Executive Summary

Page 5 About Autism Speaks

Page 5 About Autism

Arguments in favor of a legislative mandate for coverage of autism:

Page 6 Argument 1: Mandated private health insurance coverage will provide services that are desperately needed by children with autism, who have greater health care needs than children without autism.

Page 7 Argument 2: Treatments for autism are difficult to access, often inadequate, and frequently delayed. Denied coverage by private group health insurance companies, parents are often forced either to pay out-of-pocket or forego the treatments their children need.

Page 10 Argument 3: Mandated private insurance coverage will bring effective autism services within the reach of children who need them. The efficacy of Applied Behavior Analysis (ABA), the centerpiece of this legislative mandate’s benefits, has been established repeatedly.

Page 12 Argument 4: Government and scientific organizations have endorsed Applied Behavior Analysis (ABA) and other structured behavioral therapies.

Page 14 Argument 5: To combat the difficulty many families face in accessing Applied Behavior Analysis (ABA) and other structured behavioral treatments through public insurance, three states have passed autism insurance mandates that specifically require private insurance companies to provide coverage of these therapies, thus creating a public-private partnership for the provision of care.

Page 16 Argument 6: The costs of this insurance reform are small and will have very little impact on the cost of health insurance premiums for the individual consumer.

Page 17 Argument 7: By improving outcomes for children with autism, mandated private insurance coverage will decrease the lifetime costs of treating and providing services and will actually result in an overall cost savings in the long-run.

Page 19 Argument 8: Without passage of legislation requiring private health insurance coverage for autism, the costs associated with autism will continue not only to affect families, but will have far reaching social effects as well.

Page 21 Conclusion

Page 22 References

Executive Summary

Autism is a complex neurobiological disorder and is the fastest-growing serious developmental disability in the U.S. The Centers for Disease Control estimates that 1 in 150 children have autism. These children require extensive services from medical professionals. Early intervention is critical to gain maximum benefit from existing therapies. Most private health insurance plans do not provide coverage for Applied Behavioral Analysis (ABA) and other autism-related services.

This document contains eight arguments in favor of requiring private health insurance policies to cover the diagnosis and treatment of autism spectrum disorders for individuals under the age of 21. These arguments are based on epidemiological, social, and economic studies of the children and families affected by autism and prove the significant long-term financial and public health benefits of this requirement.

We first point out that children with autism have substantial medical needs and have a difficult time accessing necessary treatments through Medicaid and private health insurance. Most insurance policies contain specific exclusions for autism. This is a hardship for many families, who are often forced to cope with delayed, inadequate, and fragmented care through the Medicaid system. Often, families must pay for costly treatments out-of pocket or forego them.

We then review some of the many studies and reports that document the effectiveness of intensive behavioral therapies in the treatment of autism. An autism insurance mandate should specifically target coverage of Applied Behavior Analysis (ABA) and other structured behavioral therapies, which are the most effective forms of treatment and have the best outcomes, both in human costs and in long-term economic benefits.

We then comment on the experiences of several states with insurance reform. Their experiences show that the policy holder costs resulting from the passage of legislation requiring comprehensive autism services have been relatively small.

Finally, we point out that the mandate offers hope that children with autism will need less intensive care in the future. They will, in short, have a better chance at a normal life.
What is Autism Speaks?

Autism Speaks is an organization dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention, treatments, and cure for autism, and to advocating for the needs of affected families. The organization was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Vice Chairman, General Electric, and served as chief executive officer of NBC for more than twenty years. Autism Speaks has merged with both the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN), bringing together the nation's three leading autism advocacy organizations.

What is Autism?

Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime. It is part of a group of disorders known as autism spectrum disorders (ASD). Today, 1 in 150 individuals is diagnosed with ASD, making it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.

Argument 1: Mandated private health insurance coverage will provide services that are desperately needed by children with autism, who have greater health care needs than children without autism.

Children with autism have a tremendous need for services from trained medical professionals. These children are at risk for a range of other medical conditions, including behavioral or conduct problems, attention-deficit disorder or attention-deficit/hyperactivity disorder, stuttering, stammering, and other speech problems, depression and anxiety problems, bone, joint, or muscle problems, ear infections, hearing and vision problems, allergies (especially food allergies), and frequent and severe headaches. These problems greatly affect their overall health and their need for and use of health care services.

A recent study by James G. Guerney and others highlights the broad medical needs of children with autism. Using data from the National Survey of Children’s Health, Guerney showed that relative to children without autism, children with autism require more services for physical, occupational, and speech therapy. Children with autism are also much more likely to have poor health, to require medically necessary care for behavioral problems, and to be using medications. As evidenced in the chart below taken from the study, parents of children with autism were more likely to report the presence of a variety of concurrent medical conditions and the need for more visits to a range of medical service providers than parents of children without autism.

This reform of private health insurance coverage will address the broad medical needs of children with autism. It will ensure that these children will receive the full range of therapies necessary to ameliorate their condition.

Argument 2: Treatments for autism are difficult to access, often inadequate, and frequently delayed. Denied coverage by private group health insurance companies, parents are often forced either to pay out-of-pocket or forego the treatments their children need.

Children with autism face barriers in accessing early intensive behavioral treatments and other therapies. According to the Institute of Medicine, the term “access” is defined as “the timely use of personal health services to achieve the best possible health outcomes.” For a child with autism, lack of access to services can be the cause of inconsistent and uncoordinated care. Children with autism often experience barriers to access with even greater frequency than children with other special health care needs. In fact, one study found that “over one-third of the children with autism were reported to have experienced an access problem with respect to specialty care from a medical doctor in the preceding 12 months.” A study of the Tennessee Medicaid system, TennCare, found that for children with autism, “the rate of service use was only one tenth what should be expected based on prevalence rates.” The chart below illustrates these results and the significantly lower rates of service access for children with autism.

Within the Medicaid system, the amount of public money spent for services for developmental disabilities including autism is now eight times the rate of spending just a few decades ago. Medicaid accounts for 75% of all funding for services for the developmentally disabled, making it the largest single public payer of behavioral health services. Children with disabilities comprise a significant portion (15%) of all Medicaid recipients, and an even more significant portion (31%) of disabled children use the Medicaid system as their primary insurer.

Medicaid suffers from very low reimbursement rates that make it difficult for many locations to retain service providers. Moreover, services that can be accessed through the Medicaid system are often inadequate at meeting the specific needs of a child with autism. The system operates as a short-term service provider, tending to push children through treatment as quickly as possible. The success of the Applied Behavior Analysis, however, depends in part, on the amount of time the child with autism spends with the provider of the therapy.

The failings of Medicaid point to the importance of the private health care system in providing services to children with autism. But nationwide there are very few private insurance companies or other employee benefit plans that cover Applied Behavior Analysis and other behavioral therapies. Most insurance companies designate autism as a diagnostic exclusion, “meaning that any services rendered explicitly for the treatment of autism are not covered by the plan, even if those services would be covered if used to treat a different condition.” A 2002 study by Pamela B. Peele and others of 128 behavioral health plans administered by one of two large managed behavioral health organizations found that all the plans had some type of limit on benefits for behavioral therapies – over half of the plans had limits on the number of annual outpatient sessions and 65 percent of the plans imposed limits on the number of inpatient days covered per year.

Families that refuse to allow their children to suffer through the inadequate Medicaid system and are denied coverage by their private health insurance carriers often end up paying for therapies out of their own pockets. For these families, the financial burden is immense. Without the negotiating powers of an insurance company behind them, out-of-pocket prices are extremely high. Parents can often spend upwards of $50,000 per year on autism-related therapies, often being forced to wager their own futures and the futures of their non-autistic children to pay for necessary autism-related therapies. Children whose parents cannot afford to pay for behavioral and other therapies and who cannot access adequate therapies through the Medicaid system simply go without these interventions.

Argument 3: Mandated private insurance coverage will bring effective autism services within the reach of the children who need them. The efficacy of Applied Behavior Analysis (ABA), the centerpiece of this legislative mandate’s benefits, has been established repeatedly.

Private health insurance coverage of autism services will allow children with autism to access Applied Behavior Analysis (ABA), a proven treatment for their condition. Several studies have shown that as many as 47 percent of the children that undergo early intensive behavioral therapies achieve higher education placement and increased IQ levels. A significant portion of children who receive ABA are placed into mainstream educational settings. Children who begin their treatment with minimal IQ levels end treatment with substantially higher levels of intellectual functioning. These results have been shown to last well beyond the end of treatment. As such, the effectiveness of ABA therapy has allowed many children to forego costly intensive special education in the future.

Lovaas:

The most famous study of the effectiveness of behavioral modification treatments was conducted in 1987 by O. Ivar Lovaas. Lovaas’s study showed that when compared with other treatment programs that provide minimal therapy, Applied Behavior Analysis is extremely effective in helping many children struggling with autism, providing gained capacity for intellectual functioning and allowing a child to progress educationally.

Lovaas conducted his study of the effectiveness of behavioral modification treatments on very young children affected by autism. For his study, Lovaas split his 38 subjects into two groups: 19 subjects were put into an intensive-treatment experimental group that received more than 40 hours of one-to-one treatment per week, and 19 subjects were place in a minimal-treatment control group that received 10 hours or less of one-to-one treatment per week. Both groups were identical at intake in terms of intellectual functioning abilities, and both received their assigned treatment for 2 or more years.

Upon follow-up at age 7, the experimental group attained significantly higher results on education placement and IQ levels than the control group. According to the results of Lovaas’s study, the 19-subject experimental group showed nine children (47%) who successfully passed through normal first grade in a public school and obtained an average or above average score on IQ tests.

McEachin:

Lovaas’s landmark 1987 study was followed in 1993 by another study of these same 38 subjects. The objective of John J. McEachin’s study was to discover the long-term effects of Lovaas’s early intensive behavioral treatment and to find out if the results of the experimental group were preserved over time.

For this study, Lovaas’s original subjects were evaluated at a mean age of eleven-and-a- half years. The study was presented in two parts: the first examined whether the experimental group had maintained its treatment gains, the second part focused on the nine subjects who had achieved the greatest gain in the original study and examined the extent to which they “could be considered free of autistic symptomology.”

McEachin’s follow-up resulted in findings in three different categories: school placement, intellectual functioning, and presence of adaptive and maladaptive behaviors. In terms of class placement, the study found that “the proportion of experimental subjects in regular classes did not change from the age 7 evaluation (9 of 19, or 47%). In the control group, none of the 19 children were in a regular class, as had been true at the age 7 evaluation.” (McEachin, supra note 10) In terms of intellectual functioning, the study found that “the experimental group at follow-up had a significantly higher mean IQ than did the control group… indicating that the experimental group had maintained its gains in intellectual functioning between age 7 and the time of the current evaluation.” Finally, in terms of presence of adaptive and maladaptive behaviors, “the findings indicate that the experimental group showed more adaptive behaviors and fewer maladaptive behaviors than did the control group.” (McEachin, supra note 10)

Based on these findings, the effectiveness of ABA and other structured behavioral programs, as provided by the proposed benefit, would be experienced in the short-term as well as the long-term.

Argument 4: Government and scientific organizations have endorsed Applied Behavior Analysis (ABA) and other structured behavioral therapies.

ABA is the treatment of choice for autism. Its efficacy has been recognized in a number of prominent reports, including the following:

v The 2001 U.S. Surgeon General’s Report on Mental Health, which states, “Among the many methods available for treatment and education of people with autism, applied behavior analysis (ABA) has become widely accepted as an effective treatment. Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior.”

v The New York State Department of Health assessed interventions for children ages 0-3 with autism, and recommended that “behavioral interventions for reducing maladaptive behaviors be used for young children with autism when such behaviors interfere with the child's learning or socialization or present a hazard to the child or others.”

v The Maine Administrators of Services for Children with Disabilities notes in their report that “There is a wealth of validated and peer-reviewed studies supporting the efficacy of ABA methods to improve and sustain socially significant behaviors in every domain, in individuals with autism. Importantly, results reported include ‘meaningful’ outcomes such as increased social skills, communication skills academic performance, and overall cognitive functioning. These reflect clinically-significant quality of life improvements. While studies varied as to the magnitude of gains, all have demonstrated long term retention of gains made.”

v The National Institute of Mental Health reports, “The basic research done by Ivar Lovaas and his colleagues at the University of California, Los Angeles, calling for an intensive, one-on-one child-teacher interaction for 40 hours a week, laid a foundation for other educators and researchers in the search for further effective early interventions to help those with ASD attain their potential. The goal of behavioral management is to reinforce desirable behaviors and reduce undesirable ones.”

v The National Institute of Child Health and Human Development lists Applied Behavior Analysis among the recommended treatment methods for Autism Spectrum Disorders.

v The National Research Council’s 2001 report on Educating Children with Autism acknowledged, “There is now a large body of empirical support for more contemporary behavioral approaches using naturalistic teaching methods that demonstrate efficacy for teaching not only speech and language, but also communication.”
v The Association for Science in Autism Treatment recommends ABA-based therapies, stating, “ABA is an effective intervention for many individuals with autism spectrum disorders.”

Argument 5: To combat the difficulty many families face in accessing Applied Behavior Analysis (ABA) and other structured behavioral treatments through public insurance, three states have passed autism insurance mandates that specifically require private insurance companies to provide coverage of these therapies, thus creating a public-private partnership for the provision of care.

While there are several states that have passed autism specific private insurance mandates, very few states specifically mandate coverage for ABA and other structured behavioral therapy programs. Without coverage of these crucial, medically necessary, evidence based therapies, the effectiveness of most mandates is severely diminished. For this reason, we have concluded that only the following states have passed autism insurance legislation:

South Carolina:

Senate Bill 20, better known as Ryan's Law, was passed by both the South Carolina House of Representatives and Senate on May 31, 2007. The bill was then vetoed by Governor Mark Sanford on June 6. On June 7, the bill was brought back to the House and Senate floors, and unanimous votes in both chambers overrode the Governor's veto. This law goes into effect in July 2008.

Coverage Includes: Treatments, including behavioral therapies, which are prescribed by the individual’s treating medical doctor in accordance with a treatment plan.

Age Range: An individual must be diagnosed with autistic spectrum disorder at age eight or younger. The coverage must be provided to any eligible person less than sixteen years of age.

Dollar Cap: Coverage for behavioral therapy is subject to a $50,000 maximum benefit per year.

Texas:

On June 15, 2007, Texas enacted House Bill 1919, effective September 1, 2007. While the Texas bill limits the ages for children who can benefit from coverage, it goes further than some other states in spelling out exactly what kinds of services are covered. The bill's text specifically cites which kinds of autism-related services are examples of treatments that must be covered.

Coverage Includes: Evaluation and assessment services, A BA, behavior training and behavior management, speech therapy, occupational therapy, physical therapy, medication or nutritional supplements used to address symptoms of autism spectrum disorder.

Age Range: An individual must be between ages three and five to receive this coverage.

Dollar Cap: Same as afforded to physical illnesses

Indiana:

In 2001, the Indiana enacted House Bill 1122, requiring insurers that issue accident and sickness insurance policies on an individual basis to provide coverage for the treatment of autism spectrum disorders.

Coverage Includes: Treatment that is prescribed by the insured’s treating physician in accordance with a treatment plan. The statute thus allows many different professionally accepted therapies, such as ABA, speech therapy, occupational therapy, physical therapy, and medications to address symptoms of autism.

Age Range: All ages are allowed coverage

Dollar Cap: Same as afforded to physical illnesses

Argument 6: The costs of the proposed benefit are small and will have very little impact on the cost of health insurance premiums for the individual consumer.

Earlier this year, The Council for Affordable Health Insurance, a research and advocacy association of insurance carriers, released its annual report on state health insurance mandates, Health Insurance Mandates in the States 2007. The report defined a mandate as “a requirement that an insurance company or health plan cover (or offer coverage for) common – but sometimes not so common – health care providers, benefits and patient populations.” (Bunce, supra note 21) Using this definition, the report identified legislative mandates for autism benefits in ten states: Colorado, Delaware, Georgia, Iowa, Indiana (which, as we have noted, provides comprehensive benefits), Kentucky, Maryland, New Jersey, New York, and Tennessee. The report assessed the incremental cost of state mandated benefits for autism in these ten states as less than one percent.

The Council’s modest estimate of incremental premium costs is consistent with state government estimates across the country. Prior to enactment of Indiana’s sweeping legislation, the Indiana Legislative Services Agency estimated additional premium costs as ranging from $.44 per contract per month to $1.67 per contract per month. In vetoing Ryan’s Law in South Carolina, Governor Mark Sanford estimated that the bill, with its $50,000 maximum yearly benefit for behavioral therapy, would add $48 annually to insurance policies. And in Wisconsin, where pending Assembly Bill 417 would provide the same broad coverage Indiana’s statute mandates, the Department of Administration estimates policy increments of between $3.45 and $4.10 per month – about the same as Governor Sanford’s estimate for Ryan’s Law.

The cost estimates for Indiana, South Carolina, and Wisconsin – all states whose legislation allows a maximum benefit that can be considered high – suggest that an average autism insurance coverage mandate will cost approximately $50 annually per policy holder. For only a modest effect on premium cost, this insurance reform holds the promise of significantly improving the lives of thousands of children.

Argument 7: By improving outcomes for children with autism, mandated private insurance coverage will decrease the lifetime costs of treating and providing services and will actually result in an overall cost savings in the long-run.

A 1998 study by John W. Jacobson and others titled, Cost-Benefit Estimates for Early Intensive Behavioral Intervention for Young Children with Autism – General Model and Single State Case, examined the cost/benefit relationship of early intensive behavioral intervention treatment at varying levels of treatment success. The study used estimates of costs for early intensive behavioral interventions (EIBI) from childhood (age three) through adulthood (age 55) based on prices in the Commonwealth of Pennsylvania and compared these costs with the expected amount of income the child would earn later in life to arrive at an estimated cost savings.

With a success rate of 47 percent for early intensive behavioral intervention therapy (as determined by Lovaas), Jacobson’s study found that cost savings per child served are estimated to be from $2,439,710 to $2,816,535 to age 55.

The study also accounts for the initial investment in early intervention by concluding that, with an initial annual cost of $32,820, the total cost-benefit savings of EIBI services per child with autism or PDD for ages 3-55 years averages from $1,686,061 to $2,816,535 with inflation.

According to a 2005 Government Accounting Office (GAO) report, “the average per pupil expenditure for educating a child with autism was more than $18,000 in the 1999-2000 school year. This amount was almost three times the average per pupil expenditure of educating a child who does not receive any special education services. “ With this insurance reform in place, more children would be able to access the early intervention services they need. That investment will, in the long run pay benefits, both economic and social, to the greater population.

Argument 8: Without passage of legislation requiring private health insurance coverage for autism, the costs associated with autism will continue not only to affect families, but will have far reaching social effects as well.

The cost of autism is borne by everyone. Michael L. Ganz’s study of the societal costs of autism, The Lifetime Distribution of the Incremental Societal Costs of Autism, examined how the large financial burdens of autism affect not only families with an autistic child but society in general.

Ganz broke down the costs associated with autism into two distinct categories, direct costs and indirect costs. Direct costs include direct medical costs, such as physician, outpatient, clinic services, dental care, prescription medications, complementary and alternative therapies, behavioral therapies, hospital and emergency services, allied health, equipment and supplies, home health, and medically related travel, as well as direct nonmedical costs, such as child care, adult care, respite and family care, home and care modification, special education, and supported employment. Indirect costs include productivity losses for people with autism (calculated by combining standard average work-life expectancies for all men and women with average income and benefits and estimated age and sex specific labor force participation rates).

According to Ganz’s study, direct medical costs reach their maximum during the first five years of life, averaging around $35,000. As the child ages, direct medical costs begin to decline substantially and continue to decline through the end of life to around $1,000. Ganz goes on to report, “The large direct medical costs early in life are driven primarily by behavioral therapies that cost around $32,000 during the first 5-year age group and decline from about $4,000 in the 8-to 12-year age group to around $1,250 for the 18- to 22-year age group.” (Ganz, supra note 27)

In terms of direct medical costs “the typical American spends about $317,000 over his or her lifetime in direct medical costs, incurring 60% of those costs after the age of 65 years. In contrast, people with autism incur about $306,000 in incremental direct medical costs, which suggests that people with autism spend twice as much as the typical American over their lifetimes and spend 60% of those incremental direct medical costs after age 21 years.” (Ganz, supra note 27)27

The study also found the indirect costs of autism to be significant as well. While in the first 22 years of life, indirect costs are mostly associated with lost productivity for the parents of a child with autism, the costs from age 23 on are associated with lost productivity of the actual individual with autism as depicted in the chart below taken from the study. The impact of this lost productivity can have enormous ramifications for the tax base of an entire society and the future of the older generation as their children with autism transition into adult care.

Ganz posited that direct medical costs “combined with very limited to non-existent income for their adult children with autism combined with potentially lower levels of savings because of decreased income and benefits while employed, may create a large financial burden affecting not only those families but potentially society in general.”(Ganz, supra note 27)

Without the help of private insurance coverage, families affected by autism may never be able to pull their heads above water and provide their children with the medically necessary, evidence- based treatments that they need. It is to the advantage of these families, to the 1 in 150 children affected by autism, and to all of society that private health insurance coverage is provided for these services.

Conclusion

A legislative mandate for coverage of autism asks private insurance companies to make a limited, but significant, contribution to help pay for medically necessary, evidence- based treatments that have been established to be of the greatest impact in fighting this terrible disorder.

Unbelievably, it is not uncommon for insurance carriers to have line- item exclusions for treatment of individuals diagnosed with autism. Across the nation, children with autism are routinely denied insurance benefits for treatment of their disorder. We believe that private insurance companies must contribute their fair share and partner in the financial burdens with these families.

With every new child diagnosed with autism costing an estimated $3 million over his or her lifetime, the current practices are both unfair and not cost effective in the long run for states and their citizens. Autism Speaks is confident that many more state governments will recognize the significant long-term cost benefits found in these legislative measures, will do what is right for their constituents, and will pass legislation requiring private health insurance coverage of autism services.

References

James G. Gurney, Melissa L. McPheeters, Matthew M. Davis, Parental Report of Health Conditions and Health Care Use Among Children With and Without Autism, 160 Archives of Pediatric and Adolescent Medicine, 825-30 (2006).

Institute of Medicine, Access to Health Care in America (Michael Millman ed.) (1993)

Marty W. Krauss, Stephen Gulley, Mark Sciegaj, Nora Wells, Access to Specialty Medical Care for Children with Mental Retardation, Autism, and Other Special Health Care Needs, 41 Mental Retardation, 329-39 (2003).

David S. Mandell, Jun Cao, Richard Ittenbach, Jennifer Pinto-Martin, Medicaid Expenditures for Children with Autistic Spectrum Disorders: 1994 to 1999, 36 Journal of Autism and Developmental Disorders, 475-85 (2006).

Lisa A. Ruble, Craig A. Heflinger, J. William Renfrew, Robert C. Saunders, Access and Service Use by Children with Autism Spectrum Disorders in Medicaid Managed Care, 35 Journal of Autism and Developmental Disorders, 3-13 (2005).

Department of Public Welfare, Commonwealth of Pennsylvania: Autism Task Force Final Report (2004) Retrieved from www.dpw.state.pa.us.

Douglas L. Leslie, Andres Martin, Health Care Expenditures Associated with Autism Spectrum Disorders, 161 Archives of Pediatric and Adolescent Medicine, 350-55 (2007).

Pamela B. Peele, Judith R. Lave, Kelly J. Kelleher, Exclusions and Limitations in Children’s Behavioral Health Care Coverage, 53 Psychiatric Services, 591-94 (2002).

O. Ivar Lovaas, Behavioral Treatment and Normal Educational and Intellectual
Functioning in Young Autistic Children, 55 Journal of Consulting and Clinical Psychology, 3-9 (1987).

J. J. McEachin, T. Smith, O. Ivar Lovaas, Long-term Outcome for Children with Autism Who Received Early Intensive Behavioral Treatment, 97 American Journal on
Mental Retardation, 359-72 (1993).

U.S. Department of Health and Human Services, Mental Health: A Report of the Surgeon General, 163-64 (1999).

New York Department of Health, Clinical Practice Guideline: Report of the Recommendations, Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children (Age 0-3 Years) (1999) Retrieved from http://www.health.state.ny.us/community/infants_children/early_intervention/autism/index.htm
Maine Administrators of Services for Children with Disabilities, Report of the MADSEC Autism Task Force. (2000). Retrieved from http://www.madsec.org/docs/ATFReport.pdf .

National Institute of Mental Health, Autism Spectrum Disorders, Pervasive Developmental Disorders. (2007) Retrieved from http://www.nimh.nih.gov/health/publications/autism/complete-publication.shtml .

National Institute of Child Health and Human Development website: Questions and Answers (2006). Retrieved from http://www.nichd.nih.gov/publications/pubs/autism/QA/sub18.cfm .

National Research Council, Educating Children with Autism.(Catherine Lord & James P. McGee eds2001). Retrieved from http://www.nap.edu/openbook.php?isbn=0309072697.

Association for Science in Autism Treatment website: http://www.asatonline.org/resources/resources.htm. .

S. 20, 2007 Gen. Assem.,117th Sess. (S.C. 2007)

H.B. 1919, 2007 Leg., 80 (R) Sess. (Tex. 2007)

H.B. 1122, 112th Gen. Assem., 1st Reg. Sess. (Ind. 2001)

Victoria C. Bunce, J.P. Wieske, Vlasta Prikazsky, Health Insurance Mandates in the States 2007. Council for Affordable Health Insurance, (2007). Retrieved from www.cahi.org .

Legislative Services Agency,, Fiscal Impact Statement for HB 1122 (Apr. 5, 2001). Retrieved from http://www.in.gov/legislative/bills/2001/PDF/FISCAL/HB1122.006.pdf .

Governor Mark Sanford, Veto Message for S.B. 20 to the South Carolina Senate President, (2007). Retrieved from http://www.scgovernor.com/uploads/upload/S.20.pdf .

Wisconsin Department of Administration, Fiscal Estimate for Assembly Bill 417 (July 23, 2007). Retrieved from http://www.legis.state.wi.us/2007/data/fe/AB-417fe.pdf.

John W. Jacobson, James A. Mulick, Gina Green, Cost-Benefit Estimates for Early Intensive Behavioral Intervention for Young Children with Autism – General Model and Single State Case. 13 Behavioral Interventions, 201-26 (1998).

United States Government Accountability Office, , Special Education: Children with Autism( GAO-05-220 (2005)).

Michael L. Ganz, The Lifetime Distribution of the Incremental Societal Costs of Autism. 161 Archives of Pediatric and Adolescent Medicine, 343-49 (2007). Retrieved from www.archpediatrics.com .

SB2532 - Dylan's Law is granted a hearing

2008-02-01T19:51:00.000-08:00

Hi Everyone,
I am excited to report that Senator Ige stated that a hearing for Dylan's Law will be scheduled!! along with SB 2738. They want to compare the two bills.

All of your testimonies made a difference today. Our voices were heard. Now, we need to pull together and support SB2532 Dylan's Law and show the legislature that there is a big difference between the two bills. That we need Dylan's Law SB 2532.

Stay tuned!!

URGENT!! - Testimony Needed to Keep Dylan's Law Alive

2008-01-30T15:42:00.000-08:00

Aloha,

We found out that other bill SB2738 is scheduled for a hearing this Friday, February 1, 2008 at 1:15 p.m. in conference room 016.

The hearing for the WRONG bill (SB2738) will be on Friday at 1:15 at in Room 116 of the State Capitol. Please write testimony saying that while you appreciate the intent of the bill, it does not meet the needs of the children with autism and that Dylan's Law SB2532 is the bill of choice for the autism community - and please schedule a hearing for Dylan's Law.

Please do one the following:

1) take one copy of testimony to the committee clerk in room 215 of the State Capitol,

2) fax it in to the Senate Sergeant-At-Arms Office at 586-6659 (toll free for neighbor islands) at least 24 hours prior to the hearing and indicate the committee and the date and time of the hearing,

3) email to the Legislature's Public Access Room at testimony@capitol.hawaii.gov and indicate the committee and date and time of the hearing. If you have questions call 586-6363.

The Senate Health Committee Chair is Senator David Ige and the Vice Chair is Senator Carol Fukunaga. See the Hearing Notice at the bottom of this email.
Please include in your testimony:

From Autism Speaks, the main points are:
1) SB2738 (the OTHER bill) does not define any of the treatments it
mandates. In particular, "rehabilitation care" and "therapeutic
care" could mean just about anything (or worse, nothing). ALL the
terms in the statutes should be defined.

SB2532 Dylan's Law does
defines all the identified treatments, including "habilitation".

Insurance companies currently do not cover most speech sessions because the policies do not cover "habilitation" (for instance gaining the ability to speak or developing new words) but only "rehabilitation" (recovering skills).

2) SB2738 (the OTHER bill) does not specifically mandate ABA.

Dylan's Law mandates ABA and defines this intervention. ABA has a decades-long record of efficacy. Although ABA is the single intervention most often sought
by parents of children with autism, insurers frequently deny it as a
benefit.

3) SB2738 (the OTHER bill) authorizes the Department of Health (DOH) to determine medically necessary treatments for autism. This completely inappropriate, because each child is different; each case is different.

Dylan's Law mandates that a a licensed physician, psychologist or nurse practitioner determine the treatment intervention.

SB2738 (the OTHER bill) is no guarantee that persons with autism will
get the coverage they desperately need. Without the specific
language of Dylan's Law SB2532, the promise of help for families may
never be realized.

Thank you so much for all of your support. Send it in even if it's less than 24 hours before the hearing.

TEMPLATE or Sample Letter (Feel free to copy and paste)

Via email: testimony@capitol.hawaii.gov
Subject: Health Committe, 2/1/08, 1:15 p.m.

Via Fax 586-6659

TO: Senate Sergeant-At-Arms Office

From: Your Name

Date: Today's date

Subject: Hearing - SB2738

We appreciate the intent of SB2738, however, it does not meet the needs of children with autism. Dylan's Law, SB2532 is the bill that the autism community is supporting. We request a hearing for Dylan's Law.

The Autism community has concerns regarding SB2738 for the following reasons:

1) SB2738 does not define any of the treatments it mandates. In particular, "rehabilitation care" and "therapeutic
care" could mean just about anything (or worse, nothing). ALL the
terms in the statutes should be defined.

2) SB2738 does not specifically mandate ABA which has a decades-long record of efficacy.

3) SB2738 authorizes the Department of Health (DOH) to determine medically necessary treatments for autism. This is completely inappropriate, because each child is different; each case is different. A treatment protocol or intervention should be determined by licensed medical professional.

There is no guarantee that persons with autism will get the coverage under SB2738without the specific language of Dylan's Law SB2532, the promise of help for families may never be realized.

Sincerely,
Your name

fyi

Committe Chairs

David Y. Ige
16th Senatorial District
Hawaii State Capitol, Room 215
415 South Beretania Street
Honolulu, HI 96813
phone 808-586-6230; fax 808-586-6231
E-mail sendige@Capitol.hawaii.gov

Carol Fukunaga
11th Senatorial District
Hawaii State Capitol, Room 216
415 South Beretania Street
Honolulu, HI 96813
phone 808-586-6890; fax 808-586-6899
e-mail: senfukunaga@Capitol.hawaii.gov

ALERT - a "Dylan's Law look alike"

2008-01-27T20:47:00.000-08:00

Aloha,
It was brought to my attention that there is another bill that was introduced that looks a little like Dylan's Law. That OTHER BILL is SB no. 2738, date stamped 1/22/08, 7 pgs introduced by Sen Suzanne Chun Oakland.

Please note that this is not Dylan's Law. Dylan's law is HB 2727, SB 2532, date stamped 1/18/08, 13 pages, and was introduced by Rep Tommy Waters and Sen David Ige. The senate version of Dylan's law SB2532 is posted here on this site.

See post dated "1/25/08 Dylan's Law, HB 2727 / SB 2532 is Introduced 1/23/08"

The main points are:
1) SB 2738 does not specifically state "Applied Behavior Analysis", which is one of the specfic treatment protocols for Autism that is backed by research, and one the MOST important points.

2) SB 2738 does not offer any definitions for ANY of the Autism treatments

3) SB 2738 does not specifically state "habilitative" care, which means DEVELOPING SKILLS that wasn't there before, as opposed to REHABILITATIVE which means getting skills back. In other words, if you didn't speak, there would be no covered therapy to GAIN speech!!!

4) SB 2738 also states the appropriate treatment ISN'T going to be determined by YOUR PROFESSIONAL WHO KNOWS AUTISM. It does NOT give YOUR PROFESSIONAL MD, PsyD, etc. the final say in what treatment your child needs!!!

Please let ALL the legislators know that there is a difference and
that we need HB2727 and SB2532!!!

We are so physically isolated from the rest of the United States, the professionals who KNOW autism are so few and far between here in Hawaii, that it's important to know that the few Autism Experts who exist here will be allowed to do their jobs!!!!

It is so important that we acknowledge that the Autism disorder requires Autism specific treatment protocols and services. Research is showing that with early intensive intervention, our children have a real chance at living an independent, productive life.

Inform the legislators that you will Support Dylans Law HB 2727, SB 2532

House Committees

Consumer Protection & Commerce Committee
http://www.capitol.hawaii.gov/site1/house/comm/commCPC.asp

Finance Committe
http://www.capitol.hawaii.gov/site1/house/comm/commFIN.asp

Health Committe
http://www.capitol.hawaii.gov/site1/house/comm/commHLT.asp

Senante Committees
http://www.capitol.hawaii.gov/site1/senate/comm/commCPH.asp

Go to the following for the Health Committee page:
http://www.capitol.hawaii.gov/site1/senate/comm/commHTH.asp

Dylan's Law - HB 2727 / SB 2532 Senate version is referred to Committee

2008-01-25T21:13:00.000-08:00

Aloha, everyone!

The senate version of the bill has been referred to the Health Committee and the Commerce, Consumer Protection, and Affordable Housing Committee.

Go to the following link for the Commerce, Consumer Protection, and Affordable Housing Committee page to see who the committee members are:
http://www.capitol.hawaii.gov/site1/senate/comm/commCPH.asp

Go to the following for the Health Committee page:
http://www.capitol.hawaii.gov/site1/senate/comm/commHTH.asp

Please send a short email of support to the committee members. I will let you know when the House version is referred to committees and also when the hearing are scheduled.

Thank you so very much for your support!!!!

Dylan's Law, HB 2727 / SB 2532 is Introduced 1/23/08

2008-01-25T15:49:00.000-08:00

Hi Everyone,
Dylan's Law was introduced on January 23, 2008 by Representative Tommy Waters and Senator David Ige.

We want extend our appreciation, and thank them for doing this for us. Please send them a short note or email, and thank them. Their email addresses are listed below.

Representative Tommy Waters repwaters@Capitol.hawaii.gov
Senator David Ige sendige@Capitol.hawaii.gov

Dylan's Law (the Bill) is below

Let's Work Together and make this a Reality and give all families with children with Autism hope for a brighter future. We can make this happen!!

THE SENATE

TWENTY-FOURTH LEGISLATURE, 2008

S.B. NO. 2532

STATE OF HAWAII

JAN 18 2008

A BILL FOR AN ACT

RELATING TO HEALTH INSURANCE.

BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF HAWAII:

SECTION 1. The purpose of this Act is to ensure the
provision of quality health care procedures for all Hawaii
residents by requiring coverage of and treatment for autism
spectrum disorders.

SECTION 2. Chapter 431, article 10A, Hawaii Revised
Statutes, is amended by adding a new section to be appropriately
designated and to read as follows:

"§43l:lOA-Autism spectrum disorders benefits and
coverage; notice; definitions. (a) Any other law to the
contrary notwithstanding, each employer group health policy,
contract, plan, or agreement issued or renewed in this State
after December 31, 2008, shall provide to the policyholder and
individuals under twenty-one years of age covered under the
policy, contract, plan, or agreement, coverage for the diagnosis
and treatment of autism spectrum disorders.

(b) Every insurer shall provide notice to its
policyholders regarding the coverage required by this section.
The notice shall be in writing and prominently positioned in any

SB LRB 08-0560-l.doc

1

S.B. NO. 2532

literature or correspondence sent to policyholders and shall be
transmitted to policyholders within calendar year 2008 when
annual information is made available to policyholders, or in any
other mailing to policyholders, but in no case later than
December 31, 2008.

(c) Coverage provided under this section shall be subject
to a maximum benefit of $75,000 per year but shall not be
subject to any limits on the number of visits to an autism
service provider. After December 31, 2010, the insurance
commissioner, on an annual basis, shall adjust the maximum
benefit for inflation using the medical care component of the
United States Department of Labor consumer price index for all
urban consumers 021-U). The commissioner shall ~ublish the
adjusted maximum benefit annually no later than April 1 of each
calendar year, which shall apply during the following calendar
year to health insurance policies subject to this section.
Pavments made bv an insurer on behalf of a covered individual
for any care, treatment, intervention, service, or item, the
provision of which was for the treatment of a health condition
unrelated to the covered individual's autism spectrum disorder,
shall not be applied toward any maximum benefit established
under this subsection.

SB LRB 08-0560-1.d0c

S.B. NO. 2532

(d) Coverage under this section shall be subject to co-
payment, deductible, and coinsurance provisions of a health
insurance policy to the extent that other medical services
covered by the policy are subject to these provisions.

(e) This section shall not be construed as limiting
benefits that are otherwise available to an individual under a
health insurance policy.
(f) As used in this section, unless the context clearly
reauires otherwise:

"Applied behavior analysis" means the design,
implementation, and evaluation of environmental modifications,
using behavioral stimuli and consequences, to produce socially
significant improvement in human behavior, including the use of
direct observation, measurement, and functional analysis of the
relations between environment and behavior.

"Autism service providerw means any person, entity, or
group that provides treatment of autism spectrum disorders.

"Autism spectrum disorders" means any of the pervasive
developmental disorders as defined by the most recent edition of
the Diagnostic and Statistical Manual of Mental Disorders,
including autistic disorder, Asperger's disorder, pervasive

SB LRB 08-056O-l.doc

S.B. NO. 2532

developmental disorder not otherwise specified, Rettfs disorder,
and childhood disintegrative disorder.
"Diagnosis of autism spectrum disorders" means medically
necessary assessments, evaluations, or tests conducted to
diagnose whether an individual has an autism spectrum disorder.

"Health insurance policy" means any group health, sickness,
or accident policy or subscriber contract or certificate issued
by an insurance entity subject to this section.

"Medically necessary" means any care, treatment,
intervention, service, or item that is prescribed, provided, or
ordered by a physician, psychologist, or registered nurse
practitioner licensed to practice in this State in accordance
with accepted standards or practice and that is reasonably
expected to accomplish any of the following:

(1) Prevent the onset of an illness, condition, injury, or
disability;
(2) Reduce or ameliorate the physical, mental, or
developmental effects of an illness, condition,
injury, or disability; or
(3) Assist to achieve or maintain maximum functional
capacity in performing daily activities, taking into
account both the functional capacity of the recipient

SB LRB 08-0560-l.doc

S.B. NO. 2532

and those functional capacities that are appropriate
to recipients of care of the same age.

"Pharmacy care" means medications prescribed by a licensed
physician or registered nurse practitioner and any health-
related services that are deemed medically necessary to
determine the need or effectiveness of the medications.

"Psychiatric care" means direct or consultative services
provided by a licensed psychiatrist.

"Psychological care" means direct or consultative services
provided by a licensed psychologist.

"Rehabilitative and habilitative care" means professional,
counseling, and guidance services and treatment programs,
including applied behavior analysis, that are necessary to
develo~, maintain, and restore, to the maximum extent
practicable, the functioning of an individual.

"Therapeutic care" means services provided by licensed
speech pathologists, registered occupational therapists, or
licensed physical therapists.

"Treatmentfor autism spectrum disorders" includes the
Tollowing care prescribed, provided, or ordered for an
individual diagnosed with an autism spectrum disorder by a
licensed physician, psychologist, or registered nurse

SB LRB 08-0560-1.d0c

S.B. NO. 2532

practitioner if the care is determined to be medically
necessary:
(1) Psychiatric care;
(2) Psychological care;
(3) Rehabilitative and habilitative care;
(4) Therapeutic care; and
(5) Pharmacy care. "

SECTION 3. Chapter 432, article 1, ~awaii Revised
Statutes, is amended by adding a new section to be appropriately
designated and to read as follows:

S432 :1-Autism spectrum disorders benefits and

coverage; notice; definitions. --(a) Any other law to the
contrary notwithstanding, each individual and group hospital or
medical service plan, policy, contract, or agreement issued or
renewed in this State after December 31, 2008, shall provide to
the member and individuals under twenty-one years of age covered
under the service plan, policy, contract, or agreement, coverage
for the diaanosis and treatment of autism spectrum disorders.

(b) Every mutual benefit society shall provide notice to
its members regarding the coverage required by this section.
The notice shall be in writing and prominently positioned in any
literature or correspondence sent to members and shall be

SB LRB 08-0560-1.doc

S.B. NO. 2532

transmitted to members within calendar year 2008 when annual
information is made available to members, or in any other
mailing to members, but in no case later than December 31, 2008.

(c) Coverage provided under this section shall be subject
to a maximum benefit of $75,000 per year but shall not be
subject to any limits on the number of visits to an autism
service provider. After December 31, 2010, the insurance
commissioner, on an annual basis, shall adjust the maximum
benefit for inflation using the medical care component of the
United States Department of Labor consumer price index for all
urban consumers (CPI-U). The commissioner shall publish the
adjusted maximum benefit annually no later than April 1 of each
calendar year, which shall apply during the following calendar
year to health insurance policies subject to this section.
Payments made by a mutual benefit society on behalf of a covered
individual for any care, treatment, intervention, service, or
item, the provision of which was for the treatment of a health
condition unrelated to the covered individual's autism spectrum
disorder, shall not be applied toward any maximum benefit
established under this subsection.

(d) Coverage under this section shall be subject to co-
payment, deductible, and coinsurance provisions of a health

SB LRB 08-056O-l.doc

S.B. NO. 2932

insurance policy to the extent that other medical services
covered by the policy are subject to these provisions.

(e) This section shall not be construed as limitins
benefits that are otherwise available to an individual under a
health insurance policy.

(f) As used in this section, unless the context clearly
requires otherwise:

"Applied behavior analysis" means the design,
imnlementation, and evaluation of environmental modifications,
using behavioral stimuli and consequences, to produce socially
significant improvement in human behavior, including the use of
direct observation, measurement, and functional analysis of the
relations between environment and behavior.

"Autism service providert' means any person, entity, or
group that provides treatment of autism spectrum disorders.

"Autism spectrum disorders" means any of the pervasive
developmental disorders as defined by the most recent edition of
the Diagnostic and Statistical Manual of Mental Disorders,
including autistic disorder, Asperger's disorder, pervasive
develonmental disorder not otherwise s~ecified, Rett's disorder,
and childhood disintegrative disorder.

SB LRB 08-O56O-l.doc

S.B. NO. 2532

"Diagnosis of autism spectrum disordersi1 means medically
necessary assessments, evaluations, or tests conducted to
diagnose whether an individual has an autism spectrum disorder.

"Health insurance policy" means any group health, sickness,
or accident policy or subscriber contract or certificate issued
by a mutual benefit society subject to this section.

"Medically necessary" means any care, treatment,
intervention, service or item that is prescribed, provided, or
ordered by a physician, psychologist, or registered nurse
practitioner licensed to practice in this State in accordance
with accepted standards or practice and that is reasonably
expected to accomplish any of the following:

(1) Prevent the onset of an illness, condition, injury, or
disability;
(2) Reduce or ameliorate the physical, mental, or
developmental effects of an illness, condition,
injury, or disability; or
(3) Assist to achieve or maintain maximum functional
capacity in performing daily activities, taking into
account both the functional capacity of the recipient
and those functional capacities that are appropriate
to recipients of care of the same age.

SB LRB 08-056O-l.doc

"Pharmacy care" means medications prescribed by a licensed
physician or registered nurse practitioner and any health-
related services that are deemed medically necessary to
determine the need or effectiveness of the medications.

"Psvchiatric care" means direct or consultative services
provided by a licensed psychiatrist.
"Psychological care" means direct or consultative services
provided by a licensed psychologist.

"Rehabilitative care" means professional, counseling, and
guidance services and treatment programs, including applied
behavior analysis, that are necessary to develop, maintain, and
restore, to the maximum extent practicable, the functioning of
an individual.

"Therapeutic care" means services provided by licensed
speech pathologists, registered occupational therapists, or
licensed physical therapists.

"Treatment for autism spectrum disorders" includes the
following care prescribed, provided, or ordered for an
individual diagnosed with an autism spectrum disorder by a
licensed physician, psychologist, or registered nurse
practitioner if the care is determined to be medically
necessarv:

SB LRB 08-O56O-l.doc

S.B. NO. 2532

(1) Psychiatric care;
(2) Psychological care;
(3) Rehabilitative care;
(4) Therapeutic care; and
(5) Pharmacy care. "

SECTION 4. Section 4320-23, Hawaii Revised Statutes, is
amended to read as follows:

"S432D-23 Required provisions and benefits.

Notwithstanding any provision of law to the contrary, each
policy, contract, plan, or agreement issued in the State after
January 1, 1995, by health maintenance organizations pursuant to
this chapter, shall include benefits provided in sections
431:lO-212, 431:lOA-115, 431:lOA-115.5, 431:lOA-116, 431:lOA-
116.5, 431:lOA-116.6, 431:lOA-119, 431:lOA-120, [aft$]
431:lOA-121, and 431:lOA- , and chapter 431M."

SECTION 5. The benefit to be provided by health
maintenance organizations corresponding to the benefit provided
under section 431:lOA- , Hawaii Revised Statutes, as contained
in the amendment to section 43213-23, Hawaii Revised Statutes, in
section 4 of this Act, shall take effect for all policies,
contracts, plans, or agreements issued in the State after
December 31, 2008.

SB LRB 08-O56O-l.doc

S.B. NO. 2532

SECTION 6. Statutory material to be repealed is bracketed
and stricken. New statutory material is underscored.
SECTION 7. This Act shall take effect upon its approval.

INTRODUCED BY:

SB LRB 08-0560-l.doc

Report Title:

Mandatory Health Coverage; Autism Spectrum Disorders

Description:

Requires all health insurers, mutual benefit societies, and
health maintenance organizations to provide mandatory coverage
for all policyholders, member, subscribers, and individuals
under age 21 for the diagnosis and treatment of autism spectrum
disorders beginning 1/1/2009.

SB LRB 08-056O-l.doc

Support Needed for Insurance Bill - Dylan's Law

2007-12-29T10:58:00.000-08:00

Dear Families in Hawaii,

We write today to bring awareness, and ask for your support when autism legislation is introduced this legislative session. Majority of the families we know are privately funding their child’s ABA programs and biomedical treatment plans with little or no assistance from the schools, Medicaid, or their insurance company.

A child with autism does not outgrow it. However, with intensive intervention, some have recovered completely. Some have recovered to the point of leading a productive life. Intensive intervention gives our children and their families hope, and a brighter future.

The 2008 Hawaii Legislative Session will begin in a couple of weeks and bill introductions must be done in the next 2 weeks. We will be introducing a bill mandating health insurance coverage for autism diagnosis and treatment (including ABA, speech, ot, biomed, and anything else that is determined to be "medically necessary").

South Carolina, Texas, and Indiana have already passed similar bills and other states will be introducing their own bills.

See http://scautisminsurancebill.blogspot.com

for information on the SC bill and how they got it passed!

WE NEED YOUR HELP!

Tell your Representatives and Senators that insurance coverage for autism treatment is greatly needed. Many of them still do now know what autism is, nor do they know what treatments are needed. They need YOU to tell them! The South Carolina bill passed because the families got involved and heavily lobbied for it. Go to the following links:

If the link does not show; hightlight, copy and paste the link in URL section of your web browser, and it will take you to that location.

Home Page
www.capitol.hawaii.gov

House of Representatives
http://www.capitol.hawaii.gov/site1/house/house.asp

House of Representatives - Committees
http://www.capitol.hawaii.gov/site1/house/comm/comm.asp

House of Representatives - Links
http://www.capitol.hawaii.gov/site1/links/links.asp

House of Senate
http://www.capitol.hawaii.gov/site1/senate/members/members.asp

House of Senate - Committees
http://www.capitol.hawaii.gov/site1/senate/comm/comm.asp

House of Senate - Daily Journal
http://www.capitol.hawaii.gov/site1/senate/DailyJournal.asp

Our goal is to have at least 3 or 4 constituents for each Representative/Senator. We need to hear from you!! Please email me at flute866@gmail.com with your contact info (name, street address, phone number, ) so that we may keep a list of people who are willing to help with this cause. This will also help us know which Rep/Sen's have constituents who can contact them and which ones do not.

We can only make this happen if we work together!!!!

Mahalo!!!!
Kalma Wong
Deborah Tasato-Kodama

Website Shows Autism Videos - Offers Comparisons Between Autistic and Unaffected Children

2007-11-01T02:05:00.000-07:00

Web site shows autism videos
Dozens of clips offer comparisons between autistic and unaffected children

updated 3:23 a.m. HT, Mon., Oct. 15, 2007
CHICAGO - What's so unusual about a baby fascinated with spinning a cup, or a toddler flapping his hands, or a preschooler walking on her toes?

Parents and even doctors sometimes miss these red flags for autism, but a new online video "glossary" makes them startlingly clear.

A new Web site offers dozens of video clips of autistic kids contrasted with unaffected children's behavior. Some of the side-by-side differences can make you gasp. Others are more subtle.

Story continues below ↓

The free site, debuting Monday, also defines and depicts "stimming," "echolalia" and other confusing-sounding terms that describe autistic behavior. Stimming refers to repetitive, self-stimulating or soothing behavior including hand-flapping and rocking that autistic children sometimes do in reaction to light, sounds or excitement. Echolalia is echoing or repeating someone else's words or phrases, sometimes out of context.

The new site is sponsored by two nonprofit advocacy groups: Autism Speaks and First Signs. They hope the site will promote early diagnosis and treatment, which can help young children with autism lead more normal lives.

'Not a rare disability'
Pediatrician Dr. Michael Wasserman cautioned that the site might lead some parents to needlessly fret about normal behavior variations, and said they shouldn't use it to try to diagnose their own kids.

"Just as there's a spectrum in autism... there's a spectrum in normal development," said Wasserman, with Ochsner Medical Center in New Orleans. "Children don't necessarily develop in a straight line."

But Amy Wetherby, a Florida State University professor of communications disorders who helped create the site, noted that sometimes "parents are the first to be concerned and the doctors aren't necessarily worried. This will help give them terms to take to the doctor and say, 'I'm worried about it."

And while the children shown in the "Red Flags" video clips on the site have been diagnosed with some form of autism, the sponsors note that not all children who behave this way have something wrong. In fact, the behaviors in some of the short video clips — when viewed individually — look fairly normal.

The important thing is to seek medical help if a child does exhibit persistent unusual behavior, to either rule out autism or get an early diagnosis, said Alison Singer of Autism Speaks.

Added Wetherby, "We now know that one out of 150 children has autism, or one out of 94 boys. It's not a rare disability. We also know that early intervention is critical."

Fact file On the spectrum

Autism spectrum disorders are part of a category of conditions recognized by the American Psychiatric Association as pervasive developmental disorders. Click below for a general description of each condition.
• Autism
• Asperger Syndrome
• Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)
• Childhood Disintegrative Disorder (CDD)
• Rett Syndrome

Autism
A complex condition, autism is the most commonly diagnosed pervasive developmental disorder. Autism impairs a person’s ability to communicate, both verbally and non-verbally, to form relationships and to interact with others. It also typically results in a range of unusual and repetitive behaviors. A child with autism may initially appear to develop normally, but then withdraw and lose interest in others. Typically diagnosed by the time a child is age 3 or 4, autism can vary from mild to severe. Autism is frequently accompanied by mental retardation, but not always. In many cases, patients will show uneven levels of intelligence with highly developed talents in some areas.

Sources: Centers for Disease Control and Prevention; Yale University Child Study Center; National Alliance for Autism Research • Print this

The site was to be available to the public starting Monday on the Autism Speaks Web site.

Helpful tool
Several autism specialists who reviewed it at the request of The Associated Press called it an unusually helpful tool for parents and doctors.

"The moving pictures speak a million words," said Dr. Edwin Cook, an autism researcher and educator at the University of Illinois at Chicago.

"Not only do I see this as useful for the general public and for parents who might be wondering ... but I will frankly be using it for education" and training, Cook said. He has received research funding from Autism Speaks but has no connection to the new site.

Stefanie Voss of Tallahassee, Fla., said it will be a great tool "for parents who are in the situation that I was in three years ago, which is, 'I'm not sure if something's wrong with my child.'"

She said she asked her pediatrician about her son Nicholas when he was 14 months old and was told he didn't show "the classic signs" of autism.

"He did smile and have eye contact, but what I've learned since is those aren't the only red flags," Voss said.

Nicholas didn't point, wave, or demonstrate any other nonverbal communication. He'd also spend hours opening and closing cabinet doors or spinning plastic bowls on the floor.

She eventually took him to Florida State where he was diagnosed at age 17 months and intervention began. Nicholas is featured in a video clip on the site.

With speech lessons, physical therapy and behavior training several hours daily, he's now affectionate, social, talking, walking and in preschool.

"It shows you that all your hard work and early intervention pays off," Voss said.

Dr. Karen Ballaban-Gil, a pediatric neurology specialist at Montefiore Medical Center in New York, said the site "will be doing a real service."

The site will eventually feature a section on autism treatments and Ballaban-Gill said the only scientifically sound ones are intensive behavior training. Others, including special diets, are unproven and should not be included, she said.

Singer said there is no decision yet on which treatments will be added to the site.

Copyright 2007 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Autism screening urged for toddlers by age 2

2007-11-01T01:51:00.000-07:00

Autism screening urged by age 2
Oct. 29: Experts are urging all children to be screened for autism twice by age 2. MSNBC's Contessa Brewer reports.

updated 2:10 a.m. HT, Mon., Oct. 29, 2007
CHICAGO - The country’s leading pediatricians group is making its strongest push yet to have all children screened for autism twice by age 2, warning of symptoms such as babies who don’t babble at 9 months and 1-year-olds who don’t point to toys.

The advice is meant to help both parents and doctors spot autism sooner. There is no cure for the disorder, but experts say that early therapy can lessen its severity.

Symptoms to watch for and the call for early screening come in two new reports. They are being released by the American Academy of Pediatrics on Monday at its annual meeting in San Francisco and will appear in the November issue of the journal Pediatrics and on the group’s Web site.

Story continues below ↓

The reports list numerous warning signs, such as a 4-month-old not smiling at the sound of Mom or Dad’s voice, or the loss of language or social skills at any age.

Increasing worries
Experts say one in 150 U.S. children have the troubling developmental disorder.

“Parents come into your office now saying ‘I’m worried about autism.’ Ten years ago, they didn’t know what it was,” said Dr. Chris Johnson of the University of Texas Health Science Center in San Antonio. She co-authored the reports.

The academy’s renewed effort reflects growing awareness since its first autism guidelines in 2001. A 2006 policy statement urged autism screening for all children at their regular doctor visits at age 18 months and 24 months.

The authors caution that not all children who display a few of these symptoms are autistic and they said parents shouldn’t overreact to quirky behavior.

Just because a child likes to line up toy cars or has temper tantrums “doesn’t mean you need to have concern, if they’re also interacting socially and also pretending with toys and communicating well,” said co-author Dr. Scott Myers, a neurodevelopmental pediatrician in Danville, Pa.

“With awareness comes concern when there doesn’t always need to be,” he said. “These resources will help educate the reader as to which things you really need to be concerned about.”

Another educational tool, a Web site that debuted in mid-October, offers dozens of video clips of autistic kids contrasted with unaffected children’s behavior. That Web site is sponsored by two nonprofit advocacy groups: Autism Speaks and First Signs. They hope the site will promote early diagnosis and treatment to help children with autism lead more normal lives.

The two new reports say children with suspected autism should start treatment even before a formal diagnosis. They also warn parents about the special diets and alternative treatments endorsed by celebrities, saying there’s no proof those work.

Therapy techniques
Recommended treatment should include at least 25 hours a week of intensive behavior-based therapy, including educational activities and speech therapy, according to the reports. They list several specific approaches that have been shown to help.

For very young children, therapy typically involves fun activities, such as bouncing balls back and forth or sharing toys to develop social skills; there is repeated praise for eye contact and other behavior autistic children often avoid.

Mary Grace Mauney, an 18-year-old high school senior from Lilburn, Ga., has a mild form of autism that wasn’t diagnosed until she was 9.

As a young girl, she didn’t smile, spoke in a very formal manner and began to repeat the last word or syllable of her sentences. She was prone to intense tantrums, but only outside school. There, she excelled and was in gifted classes.

“I took her to a therapist and they said she was just very sensitive and very intense and very creative,” said her mother, Maureen, 54.

Pediatricians should send such children for “early intervention as soon as you even think there’s a problem,” Johnson said.

Dr. Ruby Roy, a pediatrician with Loyola University Medical Center, who treats at least 20 autistic children, applauded the reports.

“This is a disorder that is often missed, especially when it’s mild, and the mild kids are the ones ... who can be helped the most,” Roy said.

Dr. Dirk Steinert, who treats children and adults at Columbia St. Mary’s clinic in suburban Milwaukee, said the push for early autism screening is important — but that it’s tough to squeeze it into a child’s regular wellness checkup.

Some pediatricians have tried scheduling a visit just to check for developmental problems, when children are 2½. The problem is that insurance doesn’t always cover these extra visits, Steinert said.

© 2007 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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