Autism and Visits to the Doctor

At Left Brain/Right Brain, Sullivan [Matt Carey] posts a letter to IACC:

One goal I would hope that would be addressed in future Strategic Plans is the need for adequate medical care for autistics. It is my belief that the current medical system in the U.S. does not incentivize doctors for the care that is required by the disabled. One doctor told me that 70% or more of the information needed to come to a preliminary diagnosis comes from direct communication with the patient. It seems highly likely that individuals with difficulties in communication and sensory issues will require additional effort on the part of physicians. And, yet, insurance assumes that an office visit will be the same time for an autistic individual as for a non-autistic individual.

The questions that I would like to see addressed are straightforward. First, what is the appropriate amount of time doctors need to take to adequately address the needs of their autistic patients? This information could be used to allow for an additional or a different billing code for doctors to use with this population. Second, does the current system disincentivize doctors from taking on disabled patients in general, and autistic patients in specific?

A recent paper gives a view of the importance of these issues: Parenting aggravation and autism spectrum disorders: 2007 National Survey of Children’s Health. Parents without a medical home show much higher levels of aggravation. Addressing this one area could provide much benefit to not only the autistic children, but to the parents as well.

Also see agenda and materials for today's IACC meeting.

Views of the New York Autism Mandate Bill

The New York Post opposes it:

Albany's new stealth tax hike comes via a bill passed last month that requires insurers to provide coverage for "autism spectrum disorders."

And though the state wouldn't directly collect the "tax," employers nonetheless would have to pay it just the same -- in the form of higher insurance premiums for workers.

For lawmakers, it's a win-win-win.

* They get to play the part of the white knights -- championing "compassion" -- for having rushed in to mandate a range of medical, psychological and educational services for ASD kids.

(Who, after all, isn't moved at the thought of a family with an autistic child -- and no insurance for proper care?)

* They get to suck up to a host of special-interest groups -- the autism-treatment industry, families with autistic kids, big-government liberals, etc.

* And all the while, they can pretend that none of it will cost New Yorkers a dime in new taxes.

The truth? Insurance analysts say the bill could raise health-insurance premiums 1 percent to 3 percent.

Businesses will tack the extra costs onto the price of their goods or services, just as they do with sales tax. New Yorkers will pay -- even if they don't realize it.

That's not all. State and local governments throughout New York will face a higher tab for their own employees' insurance -- borne by . . . taxpayers.

"At a time when the state has been looking to rein in the cost of health care, we shouldn't be imposing new costs," says Leslie Moran, of the New York Health Plan Association.

Yorktown Patch reports:

"Studies have shown that for every 1 percent increase in the costs of health insurance, 30,000 New Yorkers lose their coverage entirely, as smaller employers are no longer able to afford such coverage for their workers," said Thomas Faist, Esq. in a legislative statement for the Empire State Healthcare Coalition and the New York State Association of Health Underwriters.

The statement also says that laws are already in place that require health plans to cover autism treatments, and that under the Employee Retirement Income Security Act of 1974, self-funded health plans, providing coverage for 40 - 60 percent of New Yorkers, wouldn't be subject to the mandate.

Feist writes that under the bill state insurance programs like Child Health Plus, Healthy NY and Family Health Plus "are not subject to all of the state mandated benefits that are required of the private, commercial plans and policies."

The bill states that health premiums are expected to increase by about 2 percent, but an analysis by advocacy group Autism Speaks estimates that the increase would be 0.27 to 0.63 percent after six years of the coverage mandate being in place.

The analysis also found that while New York would spend more for premimums on state health insurance programs like the New York State Health Insurance Program (NYSHIP) and Child Health Plus, it would ultimately save $13 million.

The savings, the analysis said, would come from a decreased demand for services from Medicaid, the Early Intervention Program and services provided by the Office of People with Developmental Disabilities. Over time, better access to therapies early in a child's life is expected to provide relief to school districts that may see less demand for intensive special education services as more students are able to be included in traditional classroom settings.

Judith Ursitti, Director of State Governmental Affairs for the advocacy group Autism Speaks, says that many parents of autistic children struggle with insurance denials for medical services that may not be provided by schools to the extent that a child needs to see improvement in his/her condition.

"Over and over again, when families get the diagnosis the supports in place say, 'Go to school and they'll do everything for you.' Most kids need both school and medical supports," she said.

"When an autism diagnosis is disclosed to a health plan, just about everything related to autism treatment will be denied," Ursitti said. She noted that people outside of New York whose insurance companies are based here would also see the benefits of the pending legislation.

"[Insurance companies] will always deny ABA, deeming it experimental or educational. When evaluations are needed—many times doctors prescribe speech and occupational therapies—health plans will cover only 10 visits, saying that it's not a form of rehabilitation and that it's not medically necessary."

Cuts, Mandates, and Special Education

PhillyBurbs.com reports:

It can be an imposing challenge to meet the ever-growing demands of special education. The steady increase nationwide in students with individualized education programs (IEPs), partly because of the rise in autism, is juxtaposed with increasing costs and often insufficient funding.

New Jersey got federal approval to cut $25.7 million in special education funding for the past school year, and some districts have felt the pressure grow significantly on this portion of their budgets for years. A 2007 study by the New Jersey School Board Association of the 2005 fiscal year revealed the federal and state funding gaps in New Jersey special education as costs and needs continue to rise, and the consequential financial burden special ed is putting on local school districts. That report showed that federal aid to New Jersey for special ed covered only 9 percent of the costs; initially, at the outset of IDEA, the federal government intended to pay 40 percent of special education costs for states. But many states like New Jersey, according toUnderstandingSpecialEducation.com, have seen the fed percentage of the pie shrink to less than 15 percent. The fed changed the cost formula in the 1990s, from an amount per student with disabilities to one based on three factors: a base amount, a census factor and poverty percentage.

...

Meanwhile, federal mandates for inclusion and monitoring by the New Jersey Department of Education’s Office of Special Education compel school districts to fit most IEP students into the regular classroom for the majority of the school day. This often requires sweeping staff development and alternative instructional models, such as co-teaching or an in-class supplemental resource/special ed teacher, all of which cost money to implement.

But the financial incentive there is that it costs less to educate IEP students in the home district than it does for the district to pay for special services at a private school.

But there is some positive news as well:

As for postsecondary transition incomes, the most recent data, for 2008-09, from the Department of Education show that 84 percent of IEP students no longer in secondary school at Rancocas Valley were competitively employed or enrolled in a postsecondary school within a year of leaving high school. That exceeded the state target of 80 percent. Lenape showed an 89 percent success rate.

“Early in my career, there were a lot of pullout programs and special classes, and kids did get labeled,” Moskalski said. “I think one of the good purposes of inclusion is if a (special ed) kid can be taught and helped in a regular classroom, then that helps eliminate those distinctions.

“We observe a lot of classes. I may know going in that there are three or four kids in a class who have an IEP. Can I pick those kids out? Most of the time I can’t, and that’s good.”

“We’re now addressing students that were never addressed before,” Myers added. “Students that otherwise would’ve been a burden on society are now productive members of society. There’s an economic comeback from that.”

Insel on CARA

On Monday, NIMH director Thomas Insel testified about the Combating Autism Reauthorization Act before the House Energy & Commerce Subcommittee on Health. Dr. Insel's testimony begins 21 minutes into the video:

States and Insurance

At the Los Angeles Times, Duke Helfand and Alan Zarembo follow up on the agreement between the California Department of Managed Health Care and Blue Shield of California and Anthem Blue Shield (Kaiser is considering):

One autism activist said the agreements give insurance companies a loophole by narrowly defining who can deliver the services.

Kristin Jacobson of the Alliance of California Autism Organizations said California has a shortage of licensed professionals who can provide the therapy.

The agreements, she said, are "not going to resolve the issue for the vast majority of people who need the services."

The therapy is often prescribed for up to 40 hours a week and can cost $70,000 a year or more per child in some cases.

California requires insurers to provide the same level of benefits for mental disorders, including autism, as for physical ailments. But the law does not specify what type of therapy to use.

A bill now being considered by the Legislature would do just that, naming applied behavior analysis as a covered therapy. Regulators and insurers said the new agreements were meant to help families in the short term.

While admitting no violation of law, the insurers said the settlements resolved the dispute for now. Anthem said the agreements would "reduce uncertainty for families trying to access behavioral and medical treatments for autism and related disorders." A Blue Shield spokesman said its settlement protects consumers while various legal issues are resolved.

Audrey Lee, who heads the group Los Angeles Families for Effective Autism Treatment, said six months of treatment is only the beginning for most children. Her son, now 5, has been receiving the behavioral therapy for nearly three years.

In her case, as with many others, the state Department of Developmental Services pays for it — at least for now.

"People don't have confidence that the state of California is going to take care of them," Lee said. "Parents see insurance as the wave of the future as far as funding."

The Sacramento Bee editorializes:

Senate President Pro Tem Darrell Steinberg, who chairs the select committee on autism, is carrying Senate Bill 166, which would settle the dispute by requiring that companies provide the coverage. Insurance companies remain opposed, as does the California Chamber of Commerce, contending that the bill would add to insurance costs.

Those costs are not trivial. The Department of Managed Health Care estimates the therapy runs $50,000 to $70,000 a year for a single child. An analysis of Steinberg's bill estimates its implementation might increase insurance premiums by a combined $222 million a year. But the therapy also can lower long-term costs by helping individuals live more normal lives and reduce their dependence on state services.

As the issue is fought out in the Legislature and in courts in California and other states, the U.S. Department of Health and Human Services is determining whether the therapy is covered under the Affordable Care Act of 2009.

While all that is being sorted out, Blue Shield has done the right thing by reaching an agreement. Other health care providers should follow.

Meanwhile, in Michigan, a press release from a law firm:

In a case brought by families having a child with autism spectrum disorder against Blue Cross Blue Shield of Michigan, Judge Stephen J. Murphy, III, today entered an Order granting Plaintiffs' Motion for Class Certification. The families filed suit against Blue Cross over its policy of denying applied behavior analysis (ABA) therapy to children with autism. The suit alleges that Blue Cross has illegally characterized ABA therapy as "experimental," even though it is validated by overwhelming medical and scientific authorities.

Today's ruling means that the case will proceed on behalf of thousands of families who have Blue Cross insurance and who have a child with autism. The Order was issued in the case of Potter v. Blue Cross Blue Shield of Michigan, No. 10-cv-14981 (E.D. Mich)

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Light Bulbs and Mercury

What does legislation on incandescent light bulbs have to do with autism activism? A release from the National Center for Public Policy Research suggests the answer:

Rep. Mike Burgess, M.D. (R-TX) is expected to offer a light bulb regulation limitation amendment to the U.S. House Energy and Water Appropriations bill sometime after 3:30 this afternoon.

House Energy and Commerce Committee Chairman Fred Upton (R-MI) is encouraging the move.

If opponents request a recorded vote, as expected, the vote on the amendment is expected to take place tomorrow.

"This is welcome but not surprising news," said Amy Ridenour, president of the National Center for Public Policy Research, who has been an outspoken opponent of the de facto ban on the most commonly sold incandescents. "The public response to the news that the federal government has taken away our light bulb choices is increasingly akin to the response of our ancestors to a tea tax. In both cases, the governments involved chose to interfere with the sale of something citizens of all classes all use, use often, and like a lot."
...

Ridenour was pictured with her autistic son, Jonathan, in front of their family's light bulb collection in a front page New York Times story in March. Ridenour opposes the de facto ban on limited government grounds, but first got interested in the issue because of her middle child's autism, she says. "The government is pushing us toward mercury-containing compact fluorescent bulbs, nicknamed CFLs," said Ridenour, "even as it advises us not to put them in rooms with children because these
bulbs are especially fragile and mercury is exposed if the bulbs break. Because
of his disability, our son doesn't understand that he should be careful around
bulbs, so breakage isn't an 'if,' it's a 'when.'"

Even if one does not believe that mercury causes autism, there still may be cause for concern, as Science Daily explains:

Once broken, a compact fluorescent light bulb continuously releases mercury vapor into the air for weeks to months, and the total amount can exceed safe human exposure levels in a poorly ventilated room, according to study results reported in Environmental Engineering Science, a peer-reviewed online only journal published monthly by Mary Ann Liebert, Inc.

The amount of liquid mercury (Hg) that leaches from a broken compact fluorescent lamp (CFL) is lower than the level allowed by the U.S. Environmental Protection Agency (EPA), so CFLs are not considered hazardous waste. However, Yadong Li and Li Jin, Jackson State University (Jackson, MS) report that the total amount of Hg vapor released from a broken CFL over time can be higher than the amount considered safe for human exposure. They document their findings in the article "Environmental Release of Mercury from Broken Compact Fluorescent Lamps."

Medicaid, S-CHIP and Autism

The Hill reports:

Advocates for people with disabilities and special health needs are out in force as President Obama and lawmakers weigh deep cuts to Medicaid as part of debt ceiling talks.

Georgetown's Health Policy Institute released a report Thursday that concludes that almost eight in 10 children with autism, cancer and other special healthcare needs who are enrolled in Medicaid or the Children's Health Insurance Program - about 2.9 million children - rely on those programs as their primary source of coverage. For many others, the government programs fill the gaps for services not covered by private insurance or help with cost-sharing.

"Children have the most to lose in the budget debate if Medicaid takes the brunt of the budget cuts because they make up a disproportionate share of Medicaid beneficiaries," the paper concludes. "Children and youth with special health care have more at stake in the deficit debate than any others."

From the report about children and youth with special health care needs (CYSHCN):

The most recent data indicate that of the 74 million children in the United States, approximately 14 percent (10.2 million children) meet the criteria of having a special health care need. Thirty-six percent or 3.6 million of these children rely on Medicaid or CHIP for all or part of their health care coverage. In most instances, Medicaid is the sole source of coverage for these children, but it also often plays the role of serving as a “backup” or “supplemental” source of coverage for those with private insurance. Notably, the majority of CYSHCN have private insurance, but 33 percent of their families report their child’s coverage is inadequate in meeting their needs.6 For these families, Medicaid can help fill coverage gaps and make the private coverage more affordable.

Blue Shield to Cover ABA in CA -- Sometimes

Wyatt Buchanan reports in The San Francisco Chronicle:

Parents of children with autism are hopeful they have scored a victory this week after Blue Shield of California has agreed to pay for a form of therapy for the developmental disorder that it previously refused to cover.

The announcement that Blue Shield will pay for behavioral therapies for autism treatment - a step that other providers may soon follow - was made Wednesday during a hearing at the Capitol.

The hearing was focused on myriad problems parents faced in seeking coverage for behavioral therapies for their autistic children, but part of the way through, Maureen McKennan of the Department of Managed Health Care that regulates health maintenance organizations told members of a committee about the agreement.

McKennan, the department's acting deputy director for plan and provider relations, said the deal, which was signed Monday and took effect immediately, includes no denial of coverage for behavioral treatments, though medical necessity of treatments still would be considered, broader access to health providers, forbidding interruptions in care and reimbursing a handful of people for previous treatments they received that Blue Shield would not pay for.

Coverage of the treatment - known as applied behavior analysis or behavioral intervention therapies - has been denied by HMOs and health insurers who said it is not medical treatment. Medical professionals and advocates for those with autism have disagreed.

...

California's insurance regulation is split between two departments, and the agreement applies only to Blue Shield members whose health plans are overseen by the Department of Managed Health Care and affects about 2.5 million people.

The other regulator, the Department of Insurance, has been aggressive in enforcing what regulators with that department believe is a legal requirement that health insurers pay for the treatment.

California Healthline follows up:

In related news, California's Department of Insurance on Wednesday issued a cease-and-desist order calling for Blue Shield to stop denying coverage for the behavioral autism therapy (Payers & Providers. The order contends that Blue Shield's denials violate the 1999 California Mental Health Parity Act, which requires insurers to provide the same level of coverage for certain mental health conditions as they do for physical conditions., 7/14).

DOI said it issued the order after the parents of two children with autism requested the department's assistance in responding to Blue Shield's denial of coverage for the behavioral therapy (Central Valley Business Times, 7/13).

According to a DOI spokesperson, the order does not take effect immediately. An administrative law judge will need to review the order and Blue Shield potentially could appeal the judge's ruling (Payers & Providers, 7/14).

In a statement, Blue Shield said that it will begin covering behavioral autism treatment in all cases "until the underlying legal issues are resolved in court."

The insurer added that it already has complied with DOI's request to cover the therapy for the two children whose families had requested DOI's assistance (Payers & Providers, 7/14).

See coverage from KABC Los Angeles:

Autism, Managed Care, and California

A press release from Consumer Watchdog:

Autistic children with health insurance coverage regulated under the Brown administration's Department of Managed Health Care (DMHC) are routinely denied access to treatment in violation of state law while children whose policies are regulated by the Department of Insurance (DOI), led by Insurance Commissioner Dave Jones, get the care they need, according to Consumer Watchdog and parents of autistic children testifying today at a Senate hearing in Sacramento.

Consumer Watchdog said the DMHC's willingness to settle an on-going lawsuit brought by the consumer group against the DMHC under the Schwarzenegger administration will be a litmus test of whether the Brown administration is committed to caring for autistic children.

"It is simply outrageous that whether autistic children get the care they need depends on which government regulator oversees their parents' insurance company," said Jerry Flanagan, staff attorney for Consumer Watchdog. "We urge the Brown administration to reverse the Schwarzenegger-era pro-insurer policies that illegally cut off access to needed care and severely undermine the health and safety of some of the state's most vulnerable residents. Beyond the harm to severely ill children, insurers' refusal to provide treatment for autistic kids eventually leaves taxpayers to pick up the tab."

Download Consumer Watchdog's letter to Governor Brown urging him to end the Schwarzenegger-era policies:

http://www.consumerwatchdog.org/resources/autismletter3-9-11.pdf.

Beginning in March of 2009, the DMHC made a policy change to allow insurance companies it regulates to refuse to pay for an essential treatment for autism – Applied Behavioral Analysis (ABA) – on the grounds that ABA is "educational" and not "medically effective," and paradoxically on the grounds that ABA providers are not "licensed" even though no such state license exists.

Another Study, Another Set of Uncertainties

Reuters reports:

Research has hinted that various factors around the time of birth may raise a child's risk of autism later in life, but there is still too little evidence to point to specific culprits, a U.S. study said.

Experts have long believed that genes play a key role in autism risk, but a U.S. study released last week found that genes appeared to explain a much smaller portion of the risk than previously suggested.

The latest study, a review published in Pediatrics of 40 previous studies, found that factors including low birth weight, fetal distress during labor and signs of "poor condition" in the newborn, such as problems with breathing or heart rate, have been linked to the risk of autism.

"There is insufficient evidence to implicate any one perinatal or neonatal factor in autism etiology, although there is some evidence to suggest that exposure to a broad class of conditions reflecting general compromises to perinatal and neonatal health may increase the risk," wrote Hannah Gardener, a researcher at the University of Miami who led the study when she was at the Harvard School of Public Health.

More detail from MedPage Today:

Collectively, the studies examined more than 60 perinatal and neonatal factors. Meta-analysis showed that 16 of the factors had significant associations with autism:

• Abnormal presentation, umbilical-cord complications, fetal distress, birth injury or trauma
• Multiple birth, maternal hemorrhage, summer birth, low birth weight
• Small for gestational age, congenital malformation, low five-minute Apgar score, feeding difficulties
• Meconium aspiration, neonatal anemia, ABO or Rh incompatibility, and hyperbilirubinemia

The magnitude of the risk conferred by any one factor ranged from a relative risk of 1.14 for summer birth (P=0.02) to 7.87 and 7.34 for neonatal anemia and meconium aspiration, respectively (P=0.02, P=0.001). Use of healthy versus abnormal control groups for comparison increased the effect size for all of the factors.

Additionally, the analysis ruled out several factors as possible etiologic culprits:

• Anesthesia
• Assisted vaginal delivery
• Post-term birth
• High birth weight
• Head circumference

"This study suggests that several perinatal and neonatal complications may be related to autism risk, either alone, in combination or perhaps only in those who are genetically vulnerable," the authors wrote in their discussion.

"However, the correlated occurrence of many of these complications limits the ability to determine which factors, if any, are independently associated with autism."

As an example of correlated occurrence, they noted that cesarean delivery is more common in pregnancies with abnormal fetal presentation, fetal distress, and multiple birth. Additionally, congenital malformations, low birth weight, abnormal presentation, and low Apgar are interrelated

ABC Report on Causation

KVUE in Austin presents an ABC report on autism causation:



See an earlier post with cautions about media coverage of the twin study.

Brian Calley

The Detroit Free Press profiles Michigan Lieutenant Governor Brian Calley:

Calley said his family and his Baptist faith are what truly define him, not politics. He and his wife have three children, all with Irish names -- Colin, 7; Reagan, 4, and Karagan, 16 months.

When Reagan was diagnosed with autism, Calley led an effort in the Legislature to require insurance companies to cover autism treatments. It's not a typically conservative cause -- more government control of private insurers.

The bill failed. But his daughter's autism sensitized him to the plight of other families. He said his family spends $20,000 a year for Reagan's therapy.

"My daughter is one of the fortunate few that has access to all the things she needs to in order to develop appropriately," he said. "Most parents of kids with autism have no hope whatsoever in accessing these sorts of things."

Autism in Mississippi

The Clarion-Ledger reports:

Unlike most other children his age, 7-year-old Austin Carter can't tell his dad about his day in school.

"I don't have the luxury," said Chris Carter, 32, of Jackson. "I can't wait for that day to come."

How long that will take is unknown; Austin's language problems stem from autism.

A range of socialization and communication disabilities affecting different children in different ways, Autism Spectrum Disorders are being detected in Mississippi in ever greater numbers.

A report released July 1 refers to it as a multi-billion dollar "ticking time bomb," and the means to disarm it have been as hard to come by as words are for Austin.

"The statistics are mind-boggling," said Emily Le Coz, parent of a son with autism, and author of the report prepared by the Mississippi Autism Advisory Committee.

Appointed this year by state lawmakers to produce an annual plan to educate and train students with autism, the brain trust estimates 8,139 Mississippi children have it.

Over the past decade, that's a 368 percent spike.

Yet, the state does not require autism training for teachers to get a license, nor is it required as part of a teacher's continued professional development.

That leaves many parents desperate to find adequately trained teachers for their children, or affordable services elsewhere.

"We would try voodoo if we thought it would work," said Carter, who has joint custody of Austin with ex-wife Ruth Dixon of Brandon.

From the report:

Only early, intensive intervention has been shown to help these children improve and, in many cases, overcome the debilitating effects of autism. Yet early intervention services, which are plentiful in most states, are sorely lacking in Mississippi. This is partly due to the fact that few families here can afford the cost of these services without insurance reimbursement, and Mississippi currently doesn't require health insurers to cover early intervention. Because few families can afford it, early intervention specialists don't locate in Mississippi.

...

Without the proper intervention – either as preschoolers or within the school system – this population has little chance of gaining independence or becoming contributing members of society. Few resources exist in Mississippi to help these children transition out of school and into adulthood, and as a result, they tend to drain money from state and local coffers instead of contributing to them.

It's estimated that each person with autism, if not rehabilitated, will cost society $3.2 million over their lifetime. Most of that cost comes from adult care and lost wages.

If none of the state's 8,139 children currently living with autism overcome their challenges by the time they reach adulthood, it could cost Mississippi taxpayers more than $26 billion over the next 50 years. And that's if this population doesn't expand; mostly likely it will. If so, it will strain the Department of Education, the Department of Mental Health, the vocational rehabilitation centers and the families and communities caring for them.

Yet if we begin to address this crisis today, we have the potential to rehabilitate a generation of children and save the state billions of dollars in the end.