IACC Report on Autism Spending

The Interagency Autism Coordinating Committee has just published Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 - FY 2012).

The conclusion:

Since the enactment of the Combating Autism Act in 2006, and its reauthorization under the Combating Autism Reauthorization Act of 2011, federal agencies, in partnership with the community, have made significant strides in addressing many of the pressing needs of individuals and families affected by autism spectrum disorder. In the period covered by this report, from 2010-2013, federally-funded programs and projects have increased knowledge about how prevalent ASD is in the U.S. population and how early in life ASD can be detected. While CDC most recently estimated the prevalence of autism in U.S. children at 1 in 88, they also found evidence suggesting that more children are being diagnosed by age 3 and potentially may be gaining the opportunity for early intervention.64 NIH research resulting in new and improved instruments for identifying children with ASD at increasingly young ages and a strengthened evidence base for early behavioral treatments, as well as efforts by ACF, CDC, HRSA, and the Department of Education to expand outreach to underserved populations, has also yielded new opportunities for improving skills and reducing disability both before school age and once a child enters the education system.

Federally-supported research is also revealing more about how autism develops and what risk factors may be involved. Recent studies supported by NIH have uncovered distinct differences in the brain development of infants who later are diagnosed with ASD, while studies supported by NIH, DoD, and EPA have identified potential contributions to ASD risk from diverse environmental risk factors including nutrients, air pollutants, pesticides, and paternal age. NIH- and HRSA-supported studies of conditions that often co-occur with ASD such as gastrointestinal disorders, sleep disruptions, and epilepsy are contributing to interventions strategies, and panels of experts, such as those convened through the HRSA Autism Intervention Research Programs, are rapidly assembling guidelines to help individuals with ASD, families, and practitioners address these needs in the context of daily living. NSF supports several basic and applied science projects encompassing topics related to ASD in its neuroscience and cognitive sciences portfolios and Research in Disabilities Education Program, as well as projects exploring computer simulation and robotics technologies that may have applications in helping people with ASD and other disabilities acquire important communication and social skills.

The Department of Education's efforts to develop and evaluate educational interventions, as well as provide guidance for schools on how to make school environments safe and conducive to learning for students with disabilities, are improving the ability of schools to meet the needs of students on the autism spectrum. Through comparative analyses of the effectiveness of therapies and interventions for children and adolescents with ASD, AHRQ is similarly providing communities with valuable guidance on the evidence base of such therapies as computer assisted care and mental health therapeutics.

Federal efforts at agencies such as CMS and HRSA are also identifying and evaluating best practices among services and supports across the states, and agencies including DoD, HRSA, SAMHSA, and NIH are developing practitioner training and disseminating information to individuals and families affected by ASD through toolkits, websites, and telehealth delivery systems to reach more isolated parts of the community. The Autism NOW website, supported by the Administration for Community Living, offers videos and toolkits on a range of issues spanning from early interventions to relationship building, employment, and family supports and training.

To ensure continuing coordination among federal agencies and between federal and private partner organizations, the Interagency Autism Coordinating Committee provides strategic guidance and a forum for public input into federal planning efforts, helping federal agencies and members of the public work together toward meeting the needs of the autism community. While the collaborative efforts of federal and state agencies and community partners have resulted in many research advances and improvements in services over the past 7 years, all acknowledge the growing needs of the community and the work that remains to be done. Continued collaborative efforts between the public and private sectors will be essential to drive the innovations that will lead to improved identification, interventions, services, and policies that will enhance the lives of people with ASD and their families.

New Study of Paternal Age

Brian D'Onofrio and colleagues have an article in JAMA Psychiatry titled "Paternal Age at Childbearing and Offspring Psychiatric and Academic Morbidity." Here is the abstract:

Importance Advancing paternal age is associated with increased genetic mutations during spermatogenesis, which research suggests may cause psychiatric morbidity in the offspring. The effects of advancing paternal age at childbearing on offspring morbidity remain unclear, however, because of inconsistent epidemiologic findings and the inability of previous studies to rigorously rule out confounding factors.

Objective To examine the associations between advancing paternal age at childbearing and numerous indexes of offspring morbidity.

Design, Setting, and Participants We performed a population-based cohort study of all individuals born in Sweden in 1973-2001 (N = 2 615 081), with subsets of the data used to predict childhood or adolescent morbidity. We estimated the risk of psychiatric and academic morbidity associated with advancing paternal age using several quasi-experimental designs, including the comparison of differentially exposed siblings, cousins, and first-born cousins.
Exposure Paternal age at childbearing.

Main Outcomes and Measures Psychiatric (autism, attention-deficit/hyperactivity disorder, psychosis, bipolar disorder, suicide attempt, and substance use problem) and academic (failing grades and low educational attainment) morbidity.

Results In the study population, advancing paternal age was associated with increased risk of some psychiatric disorders (eg, autism, psychosis, and bipolar disorders) but decreased risk of the other indexes of morbidity. In contrast, the sibling-comparison analyses indicated that advancing paternal age had a dose-response relationship with every index of morbidity, with the magnitude of the associations being as large or larger than the estimates in the entire population. Compared with offspring born to fathers 20 to 24 years old, offspring of fathers 45 years and older were at heightened risk of autism (hazard ratio [HR] = 3.45; 95% CI, 1.62-7.33), [emphais added] attention-deficit/hyperactivity disorder (HR = 13.13; 95% CI, 6.85-25.16), psychosis (HR = 2.07; 95% CI, 1.35-3.20), bipolar disorder (HR = 24.70; 95% CI, 12.12-50.31), suicide attempts (HR = 2.72; 95% CI, 2.08-3.56), substance use problems (HR = 2.44; 95% CI, 1.98-2.99), failing a grade (odds ratio [OR] = 1.59; 95% CI, 1.37-1.85), and low educational attainment (OR = 1.70; 95% CI, 1.50-1.93) in within-sibling comparisons. Additional analyses using several quasi-experimental designs obtained commensurate results, further strengthening the internal and external validity of the findings.
Conclusions and Relevance Advancing paternal age is associated with increased risk of psychiatric and academic morbidity, with the magnitude of the risks being as large or larger than previous estimates. These findings are consistent with the hypothesis that new genetic mutations that occur during spermatogenesis are causally related to offspring morbidity.

Off-Label Drugs

Michelle Diament writes at Disability Scoop that AAP is is urging physicians to use evidence and their best judgement in prescribing “off-label” drugs, a practice that’s common among children on the spectrum.

In a policy statement issued Monday, the American Academy of Pediatrics said that with less than half of drugs labeled for use in children, it’s “more than likely” that doctors will prescribe medications for uses that are not specifically approved. However, that does not mean that the practice of prescribing “off-label” is “incorrect,” the group said.

Under the recommendations, prescribers should take into account “sound scientific evidence, expert medical judgment or published literature whenever possible” in determining whether a drug will benefit an individual patient.

“Off-label use of a drug should be done in good faith, in the best interest of the patient and without fraudulent intent,” the policy statement said.

Physicians should fully-document any use of drugs off-label and should warn patients and their parents if such use is experimental, the group said.
...
Off-label prescribing is common for children with autism, with research indicating that nearly two-thirds of kids on the spectrum take psychotropic drugs even though only two medications — Risperdal and Abilify — are approved by the Food and Drug Administration to treat symptoms associated with the developmental disorder

Insurance Mandate Action in Georgia and South Dakota

The Atlantic Journal-Constitution reports:

Insurance companies would have to cover autism therapy for children 6 years and younger under a mandate passed Tuesday by the Georgia Senate.

Chamber leaders hailed the 51-0 vote for Senate Bill 397, which they said would provide some of the state’s youngest children the help they need to succeed later in life.

Business and insurance groups continue to oppose the effort, however, and warn it would increase health insurance premiums across Georgia.

Hundreds of advocates have spent at least five years pushing for autism insurance coverage, many of them inspired by a now 9-year-old Georgia girl named Ava Bullard. Ava is the great-niece of Sen. Tommie Williams, the chamber’s former president pro tem. She began applied behavioral therapy for autism at age 3 and now functions well.

SB 397, sponsored by Senate Insurance and Labor Chairman Tim Golden, R-Valdosta, does not go as far as many of the advocates would like, but most have celebrated it as a first step. Senate leaders, who fast-tracked the bill after weeks of behind-the-scene negotiations, have acknowledged it is a compromise that seeks to lessen complaints from opponents.

In South Dakota, the Rapid City Journal reports:

 Insurance providers should cover autism spectrum disorder in South Dakota, the state House of Representatives decided Monday.

House members voted 57-12 to send HB 1257 to the Senate for consideration.

“For seven dollars a year? That’s nothing. That’s peanuts. We blow that out of our gas tank driving around town every day,” Rep. Charlie Hoffman, R-Eureka, said.

The bill’s sponsor is Rep. Scott Munsterman, R-Brookings. He said a Wellmark witness testified the coverage would cost $2 to $7 per person annually.

“These kids are salvageable, and we want to save as many as we can,” said Rep. Scott Ecklund, R-Brandon, a medical doctor.

More than 30 states have autism mandates, according to Rep. Melissa Magstadt, R-Watertown. “We need this for our kids,” she said.

Only 25 to 35 percent of children with autism would be covered, said Rep. Mike Verchio, R-Hill City.

Developments in Utah and California

In Utah, The Deseret News reports:

A Senate committee voted unanimously Monday to renew a two-year pilot program that provides treatment for children with autism spectrum disorder.

If the bill ultimately passes, HB88 would allow for autism services to be provided through a Medicaid waiver program and a public employee health plan. The program previously included an autism treatment account, but funding for the account ends in June.

Autism Speaks reports: 

California Senate President pro Tem Darrell Steinberg has scheduled a March 4 hearing to examine the impacts of the state's 2011 autism insurance reform law, including a review of how the Regional Centers have been affected.

The hearing before the Senate Select Committee on Autism & Related Disorders will take place at the State Capitol in Room 4203 starting at 1:30 pm. A preliminary agenda is HERE.
Steinberg, who sponsored the 2011 law (SB.946), said the informational hearing will focus on four areas:

• Access to care: Are consumers and families obtaining appropriate services and interventions in a timely and effective manner?
• Assessment and treatment: Are consumers and families obtaining services and interventions from appropriate and qualified networks of providers?
• Fiscal implications: What are the financial issues (savings and expenses) that have ensued from the autism mandate and how are they affecting consumers/families, regional centers, providers, health plans and other stakeholders?
• Benefits & Challenges: Are there other issues, perspectives, and topics that merit consideration in the implementation of the autism mandate?

A significant portion of the hearing is expected to fous on the law's impact on the Regional Centers. Kristin Jacobson, representing the Alliance of California Autism Organizations, will present the findings of a statewide survey of consumers conducted by the Autism Society.

Georgia Mandate Advances

An alternative to Ava's law is advancing.  Georgia Health News reports that the state Senate Insurance and Labor Committee approved SB 397.

Committee Chairman Tim Golden, R-Valdosta, the lead sponsor on SB 397, said the costs of the treatment that would be covered under the legislation could not exceed $35,000 per year for each child. The eligible age for coverage would be capped at 6 years old.

In addition, employers could opt out of the coverage for “applied behavior analysis” if it led to a 1 percent annual increase in premiums. Companies with 10 or fewer employees would be exempt from the mandate. It also would not apply to larger employers that self-insure their benefits.

Legislative efforts to require insurers to cover applied behavioral therapy for autism have been ongoing in Georgia for five years, led by Sen. Tommie Williams, R-Lyons, whose niece’s daughter was successfully treated with the therapy.
...
Lt. Gov. Casey Cagle joined Williams and Golden on Thursday in making impassioned pleas for approval of the SB 397. The bill now goes to the Senate Rules Committee before heading to the Senate floor.

Also voting in favor of the legislation was Sen. Charlie Bethel, R-Dalton, who serves as Gov. Nathan Deal’s floor leader. Bethel was among committee members who noted that Deal supported funding for the autism therapy by allocating $2.4 million in his FY 2015 budget for coverage in the State Health Benefit Plan.

SB 397 would not mandate payment for applied behavioral therapy under Medicaid and PeachCare, the programs covering children of the state’s poorest families.

The Georgia Association of Health Plans, an industry trade group, opposes the effort to require autism coverage, saying it would unfairly increase costs for employers.

"Children Have Died"

At Forbes, Emily Willingham knocks down an old story that the CDC is hiding a vaccine-autism link.  At Livescience, Mark Lallanilla describes how the vaccine theory is hurting people.

The latest measles threat started when an infected student at the University of California, Berkeley, rode the Bay Area Rapid Transit (BART) train system earlier this month, possibly exposing hundreds of thousands of people to the disease, the Los Angeles Times reports.

And in a worrisome trend, it's the college-educated residents of affluent areas who are skipping vaccinations. "It's that whole natural, BPA-free, hybrid-car community that says, 'We're not going to put chemicals in our children,'" Dr. Nina Shapiro, of UCLA's David Geffen School of Medicine, told Salon.com. [5 Dangerous Vaccination Myths]

...
Some observers are surprised that many of the parents who are deciding against vaccinating their children aren't from poor or marginalized communities, but rather in some of the wealthiest enclaves in America.

"One of Malibu's three elementary schools reported that just 58 percent of its kindergartners were up to date on their vaccinations," Shapiro wrote, noting that some private schools have vaccination rates as low as 20 percent. "Parents are willingly paying up to $25,000 a year to schools at which fewer than one in five kindergartners has been immunized against … measles, polio, meningitis and pertussis."

Even in places where vaccinations are required, exemptions are easily obtained for religious or other reasons. Some people, it seems, have forgotten how devastating many communicable diseases are.

"When I was in medical school, pertussis was discussed primarily in the past tense," Shapiro wrote. "We learned about how whooping cough had taken the lives of many people in the 1930s, before a vaccine was available. It felt like ancient history."

"But now, pertussis has made a comeback in California and other states, causing severe illness in kids and adults," she wrote. "Children have died."

. From KQED's California Report:

First the flu, then whooping cough and now measles. State health officials announced Friday morning that the state has 15 confirmed cases, compared with just two at this time last year.

Of the 15 cases, three are in people who traveled to the Philippines, where a large outbreak is occurring, according to the California Department of Public Health (CDPH). Two more cases are in recently returned travelers from India, where measles is endemic. Nearly half of the cases — seven — are in people who were “intentionally not vaccinated,” said Dr. Gil Chavez, state epidemiologist with the CDPH.

...
“It’s very clear to anyone that’s been following the issue that there’s no information that supports the theory that vaccines are harmful to kids, and that any link to long-term problems, such as autism, has been debunked,” Chavez said.

ABLE Act Awaiting CBO Estimate

Many posts have discussed growing support for the ABLE Act. Disability Scoop reports:

But before Congress can move forward, lawmakers are waiting for the Congressional Budget Office to weigh in with an estimate of what the bill would cost the government if it’s implemented. Once that figure is released — which could happen any day now — Congress is expected to act swiftly with advocates hoping for a floor vote in early spring.

“The ABLE Act is a must-pass piece of legislation for this Congress,” said U.S. Rep. Cathy McMorris Rodgers, R-Wash., who is a member of the House leadership and a co-sponsor of the bill, in a statement to Disability Scoop.

Modeled after the popular 529 college savings plans, the ABLE Act would allow individuals with disabilities to open a special account at any financial institution to pay for education, health care, transportation, housing and other expenses. Interest earned on savings within the accounts would be tax-free.

The bill is backed by nearly every national disability advocacy group and has 63 co-sponsors in the U.S. Senate and 332 in the U.S. House of Representatives representing both political parties. An online petition favoring the act has generated more than 230,000 signatures.

“The fact that only six bills in all of Congress have this many co-sponsors is a sign of the overwhelming support for this effort to make a major difference in the lives of these families,” the measure’s chief sponsor, Sen. Bob Casey, D-Pa., said in December.

Insurance Industry Bill in Kansas

Dave Ranney writes for the KHI News Service: 

Agreement remains elusive on proposed legislation that would require health insurers to cover the diagnosis and treatment of some autistic children.

Last week, Rep. John Rubin, a Shawnee Republican, said he was close to reaching accord with insurance company lobbyists on a bill that would expand autism coverage to several hundred Kansas children. But that didn’t happen.

“We were unable to reach consensus on a compromise bill,” Rubin said, “So the insurance companies on Friday introduced their own bill.”

Rubin said the insurance company proposal, House Bill 2704, is “wholly unacceptable to me and to the autism community. It doesn’t accomplish anything positive. It’s likely that I will testify against it.”

Today, the bill was referred by House leaders to the House Taxation Committee, which exempted it from some looming legislative deadlines.

Rubin’s preferred bill, HB 2531, has not had a hearing nor has it been referred to a deadline-exempt committee.

The bill from the insurance companies would limit the autism coverage to state-regulated, large-group plans — those covering at least 51 employees — sold after Jan. 1, 2015. Coverage would be limited to no more than 520 hours of treatment per year for children less than nine years old.

Rubin’s bill would limit coverage to 40 hours a week (2,080 hours a year) for children up to age 19. It also would have applied to all state-regulated policies — individual, small-group, and large-group — in place before enactment of the Affordable Care Act.

Rubin’s bill would cover an estimated 750 children. The insurance company bill would cover less than 200, according to Michael Wasmer of the advocacy group Autism Speaks.

Consider the Source

Many posts have discussed purported links between autism and toxic chemicals.

Emily Willingham tracks the source of one article:

Two clinicians who “utilize detoxification methods in their clinical practices” together with a third author have published an epic review in Translational Psychiatry claiming to evaluate the evidence for the involvement of environmental contaminants in autism. While we obviously want to limit contaminant exposure, autism doesn’t emerge here as the reason for doing so. Something that does emerge, however, looks a lot like bias and not much like systematic evaluation.

...
The review article funding came from the Autism Research Institute, begun by the late Bernard Rimland (vaccines-cause-autism proponent) and the origin of the controversial and now-defunct Defeat Autism Now! conferences and clinician registry.

The first and third authors of this review, Daniel Rossignol and Richard Frye, are scientific advisors to Jenny McCarthy’s Generation Rescue, a group committed to the idea that vaccines and mercury cause autism. Rossignol and second author Stephen Genuis declared the conflict of interest regarding using “detoxification methods” in their practices (those would be applied, presumably, for “metal toxicity” etc.). Each author has other interests in the conclusions from the review (including related to oft-mentioned metabolicdisorders, among others).

Rossignol was a Defeat Autism Now! Doctor who tells parents on his clinic Website that children with an autism diagnosis “in many cases” will need to have a large number of tests ordered. These tests include analyses for lead and “increased heavy metal or pesticide levels in the kidney … markers of the metal burden in the body.” And, of course, at the top of his “Articles” page, you will find a link to this latest open-access review with its conclusions that such toxicants are implicated in autism. In addition to his “detox in clinical practice” disclosure, he’s a big fan of HBOT, which the FDA has warned us about.

Self-Advocate Backs Ava's Law

Autism Speaks features a post by self-advocate Paul Silver, who supports mandate legislation in Georgia. 

Finally, On February 4th, 2014, I went to the Georgia State Capitol armed with a Power Point about Ava’s Law on my tablet and two friends who have Aspergers themselves. I also brought with my most treasurable item which was a baby picture of me with my grandfather. The picture was giving to me by my grandfather’s second wife, Alice, during my Bar Mitzvah. My grandfather was a doctor and started a medical facility inside the State Capitol. My grandfather was also a lobbyist for the Medical Association. But sadly, my grandfather passed away in April 2002.

Anyway, my friends and I get to the State Capitol. We found the room where Autism Speaks was having their rally and then I was asked if I would like to be interview about Ava’s Law. I say yes. The reporter from WGCL asked what I think what of my autism? I say Autism is a blessing and a curse. Then he asked me why that is? I had to think of that and then say “A blessing, you know that you are different and a curse because it is very hard to get along with you peers.” The blessing part of my statement to the reporter was very difficult for me because I did not have a very good answer in my head.

However, the curse part of my statement to the reporter was somewhat easy because I was often bullied by my peers in my years of public education. The bullying was so bad during my first two years of high school; my parents move me and my brothers to a different high school for the last two years of high school. My interview was show on the five o’clock news. After my interview I walked to the doors to house chambers and found Mike Dudgeon and show him my power point.

While I was talking to Mike, I saw Anna Bullard and her daughter Ava walking out of the Speaker David Ralston’s office. I show Anna and Ava my power point. They were so glad that I came to capitol and very impressed with my power point. But on the State Senate side I could not get in touch with my state senator. After two attempts he still would not come out. I know this going to be hard but I will not be satisfied until Ava’s Law is sign by Governor Nathan Deal.

Nearing the Cliff

From an editorial in The Worcester Telegram:

Certain birthdays are milestones in the progress to adulthood. Ages 16, 18 and 21 have special meaning to many. For families with severely disabled children, turning 22 is huge.

And it is a threshold many fear to cross.In Massachusetts, a person with autism or another special need "ages out" of the public school system at 22, and into the adult services system if they qualify.

With the number of autism cases climbing, Massachusetts — a state respected for its comprehensive response to different capabilities and learning styles during the school years — is unprepared to assist the many autistic adults expected to need help with housing, self-care and other basics for decades.

Parents facing the age-22 divide are finding to their alarm that money for services is absent or tight. Just when they might have been aiming for some degree of independence for their loved one through concerted, joint effort — they are more on their own than before.

Michael E. Moloney, CEO of Horace Mann Educational Associates in Franklin, said at a recent autism summit in Worcester that "the adult system, unequivocally, is not ready" for the tide of autistic children aging into adulthood.

It can take a decade or two for space in an appropriate group home to open up, parents and advocates say. Some parents who are legal guardians for their children end up serving as their housing and care provider for many years, which does not always meet the autistic adult's best interest in the present, let alone the future.

Many parents of autistic people say, "I can't die."

But we all do.

Wakefieldism Goes Global

The Australian carries a London Times story about Andrew Wakefield's legacy:

THE legacy of the discredited research by MMR scare doctor Andrew Wakefield has been exposed by a map showing spikes in cases of preventable childhood diseases in areas across the globe where anti-vaccine campaigners are active.

Laurie Garrett, senior fellow at the Council on Foreign Relations think-tank, who assembled the data for the interactive map, said there was growing evidence that “Wakefieldism” had become a worldwide phenomenon.

“Our data suggests that where Wakefield’s message has caught on, measles follows,” she said.

 

Utah Mandate Advances

The Salt Lake Tribune reports:

SB57 would add Utah to the list of 34 states that require insurers to pay for autism treatment. It cleared the Senate Business and Labor Committee 6-1, despite concerns that it could raise insurance rates for employers, including the state of Utah.

Fiscal analysts predict the bill would cost the state about $3 million, mostly in increased premiums for state employees.

Sponsoring Sen. Brian Shiozawa, R-Cottonwood Heights, said data from other states with autism coverage requirements show the increases in premiums costs are negligible. A study in Missouri showed its autism mandate bumped the cost of health insurance claims by 0.2 percent.

"There’s a medical adage you never want to be the first or the last to embrace a therapy," said Shiozawa, a physician. But "this is not an investigational drug or therapy. We know this is safe and that it works."

The bill is endorsed by the Salt Lake Chamber of Commerce and Utah’s doctor lobbies, the Utah Medical Association (UMA) and Utah Academy of Family Physicians.

It’s opposed by the equally politically powerful insurance industry, which contends it will raise insurance premiums for small businesses that can least afford to pay them and will likely drop their health benefits. SB57 would only affect state-regulated insurers, those that sell directly to individuals and small employers.

But faced with growing ire over coverage denials, insurers were hard-pressed to mount a persuasive argument Friday.

DSM-5 and Services in South Carolina

There was some concern that DSM-5 could lead to reduction of services to people on the spectrum.  In South Carolina, however, people with a diagnosis of Asperger or PDD-NOS were ineligible for services from the Department of Disabilities and Special Needs.  But under the new, broad label, things are different.

In Columbia, The State reports:

State officials have seen a 14 percent jump in the number of people seeking help for autism because of a change in the official definition of the disorder.

The American Psychiatric Association updated its definition of autism in the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders to include Asperger syndrome and some cases of pervasive developmental disorder. That new definition made a new population eligible to receive services from the state Department of Disabilities and Special Needs.

“It’s a very good thing because these people are the ones who have kind of fallen through the cracks,” said Kim Thomas, president of the Autism Society of South Carolina. “It gives them hope that there can be services for them.”

Statewide, more than 6,500 people have applied for autism-related services from the Department of Disabilities and Special Needs. Of those, about 920 are eligible because of the new definition for autism, said Lois Park-Mole, a department spokeswoman.

But not all of them are receiving services.

That is because the department has huge waiting lists for most of its programs. One program that includes autistic children – the pervasive developmental disorder program – has 902 children in the program and another 1,241 on its waiting list.

Read more here: http://www.thestate.com/2014/02/14/3267770/new-definition-prompts-almost.html#storylink=cpy

South Dakota Mandate Bill

In Sioux Fall, SD, KDLT-TV reports:

Children with cancer receive treatment, children with diabetes get insulin. So why is it becoming difficult for children with autism to get the help they need? That’s the question South Dakota State Representatives were faced with Thursday.

Several parents and therapists were in Pierre speaking with legislators about House Bill 1257. If passed as is, the measure will require insurance companies to cover all therapies for autistic individuals.

Robyn Stemper, mother of autistic child said, "A year ago, she would just bang her head on the wall and she would have a constant bruise on her forehead, we didn't go out much because it was just too overwhelming for her." 

Stemper's daughter Kierra was diagnosed with autism last December. Since then, the 5-year-old has been in Applied Behavioral Analysis, or ABA, 40 hours a week.

"They had her toilet trained within one to two months, she can sing songs, she can count to five," Stemper smiled. 

Stemper said in November, she received a letter from her insurance company saying they would no longer cover the ABA therapy, because they aren't required too.

"It's not based on her needs, it's based on money," Stemper said.

Senate Report on Restraint and Seclusion

A Wednesday release from the US Senate Committee on Health, Education, Labor and Pensions:

At a news conference in Washington today, Senator Tom Harkin (D-IA), Chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee, unveiled the findings of an investigation into the use of seclusion and restraints. Harkin’s investigation found that under current law, a family whose child has been injured, experienced trauma, or died as a result of the use of seclusion or restraints in school has little or no recourse through school procedures or the courts.

At the event, Harkin announced the introduction of the Keeping All Students Safe Act, a bill to ensure the effective implementation of positive behavioral interventions in our nations’ schools. The legislation will help schools establish a safe and engaging learning culture for teachers and students alike, and will bar the use of seclusion in locked, unattended rooms or enclosures. The bill also prohibits almost all uses of restraint procedures in schools. A summary of the bill can be seen here.

...

Chairman Harkin’s staff undertook an investigation in order to better understand the types of seclusion and restraints occurring in U.S. schools, and the obstacles faced by families seeking to stop the use of these practices or seeking restitution for harm caused by these practices. The investigation examined ten recent cases where children have suffered severe trauma and even loss of life as a result of these practices, and found that only eighteen states currently require parents be notified about the use of seclusion or restraints. In these ten cases across different states, children were significantly injured or had died due to the use of seclusion and restraints in their schools. For the students profiled in the report, their educational experiences were marred by the use of these practices with no educational benefits, often repeatedly for long periods of time over many instructional days that reduced the students’ learning opportunities.

The report also found certain commonalities across cases and states, including:

• Families were often not informed of the seclusion and restraints being used with their children. In fact, when parents are told or discover their children have been subjected to these practices, it often explains why they have seen changes in their child’s temperament, behavior, or learning.

• Families had difficulty obtaining information or documentation from schools about the frequency, intensity, and duration of the practices.

• Current laws and regulations often prevent families from successfully recovering on behalf of their children even in cases of clear abuse. The exhaustion requirements of the Individuals with Disabilities Education Act (IDEA), which require a family to exhaust all of their due process options under the law before taking a case to court, pose a particular challenge to families of children with disabilities. In light of these requirements, parents are often forced to resort to removing a child from a school as the only means to stop the use of seclusion and/or restraints.

• Proving psychological harm in the absence of physical damage poses additional challenges in a formal court setting.

• Parents have difficulty overcoming the presumption that teachers and schools acted appropriately when secluding and restraining children;

• Even in cases where a family may find relief for their own child, existing laws do not incentivize school districts to change policies and practices.

...

The full investigation can be seen here.

Schools and Costs

CNN reports on a recent study of costs (the subject of an earlier post):

The surge in autism diagnoses since the year 2000 has come with a massive cost that’s shouldered largely by the public school system, say researchers at the Harvard School of Public Health.

In what’s billed as a conservative estimate, they say the “economic burden” of an autism diagnosis is more than $17,000 a year through age 17, with medical costs making up less than 20% of the total. The biggest chunk of the tab, $8,610, is picked up by schools, according to their paper, published Monday in the journal Pediatrics.

“The education system is already under a lot of financial strain,” says Tara LaVelle, the lead author, who is now an associate policy researcher at the RAND Corporation. “We need policies at the federal, state and local level to make sure funds are available to provide appropriate intervention.”

...

In the study, 78% of children with ASD attended public school, compared with 62% of other children. Researchers found 76% of children with ASD use special education services, compared with 8% of the overall school population.

As autism diagnoses surged in the early 2000s, so did federal grants for special education – from $5 billion in 2000 to $12 billion just five years later. More recently, the pace of federal spending has slowed, leaving states and cities struggling to make up the difference.

Restraint and Seclusion in Connecticut

The New Haven Register reports:

Children with autism were the most frequently subjected to restraint or seclusion in Connecticut schools in the 2012-13 school year, according to a new state report that tallied more than 33,000 incidents of physical restraint or seclusion in public schools and private special education programs.

The report from the state Department of Education shows that autism was the primary disability among special education students subject to “emergency” restraint or seclusion, with 40.4 percent of all such incidents involving a child with autism. Autism also accounted for nearly half of all cases in which children were put in seclusion as part of their individualized education plans, or IEPs.

From the report:

The Economic Burden

At Pediatrics, Tara Lavelle and colleagues have an article titled "Economic Burden of Childhood Autism Spectrum Disorders."  The abstract:

OBJECTIVE: To estimate the associations between autism spectrum disorder (ASD) diagnoses and service use, caregiver time, and cost outcomes.

METHODS: We used national data from the Medical Expenditure Panel Survey linked to the National Health Interview Survey and a study-specific survey to estimate the annual utilization and costs for health care, school, ASD-related therapy, family-coordinated services, as well as caregiver time in children aged 3 to 17 years, with and without parent-reported ASD. Regression analyses estimated the association between ASD diagnosis and cost, controlling for child gender, age, race/ethnicity, insurance status, household income, country region and urban/rural classification, and non–ASD-related illnesses.

RESULTS: Children with parent-reported ASD had higher levels of health care office visits and prescription drug use compared with children without ASD (P< .05). A greater proportion of children in the ASD group used special educational services (76% vs 7% in the control group, P < .05). After adjusting for child demographic characteristics and non–ASD-associated illnesses, ASD was associated with $3020 (95% confidence interval [CI]: $1017–$4259) higher health care costs and $14 061 (95% CI: $4390–$24 302) higher aggregate non–health care costs, including $8610 (95% CI: $6595–$10 421) higher school costs. In adjusted analyses, parents who reported that their child had ASD did not have significantly higher out-of-pocket costs or spend more time on caregiving activities compared with control parents.

CONCLUSIONS: The economic burden associated with ASD is substantial and can be measured across multiple sectors of our society. Previous analyses that focused on health care underestimated this economic burden, particularly for school systems.

Disability Scoop adds:

Nationally, with 673,000 kids estimated to be on the autism spectrum, the researchers said that the cost of caring for this group in 2011 likely totaled $11.5 billion in the U.S. alone.

A 2012 study found that autism costs total $137 billion annually, but indicated that adults account for the majority of spending since they require housing and are often unemployed or underemployed. The current study focused exclusively on children.

Despite the hefty price tag, parents of kids with autism did not report significantly higher out-of-pocket costs, the study found. Rather, the expense is largely borne by society through special education services and other offerings.

Autism Speaks adds:

Unexpectedly, the Harvard study found no autism-related increase in out-of-pocket expenses or lost income to families. This contrasts with recent reports of unreimbursed therapy costs forcing families to sell their homes in states that have yet to pass autism insurance reform laws.

“Numerous studies have demonstrated financial burden on families,” Rosanoff notes. Onerecent study, for example, found that mothers of children with autism earn, on average, 56 percent less than mothers of children without health limitations.

“There’s no clear explanation for this discrepancy,” Rosanoff says. “But studies that use different datasets at different points in time aren’t directly comparable.” Another possible explanation is that hard-won advances in health-insurance coverage for autism are reducing the burden on some families. However the majority of American families remain without health coverage for autism therapies. (For more on Autism Speaks advocacy efforts, click here.)
Looking beyond childhood

While the Harvard study looked at children, the majority of autism’s lifetime costs appear to be associated with adulthood, Rosanoff adds. These costs - including housing, disability support and lost productivity - are set to skyrocket as increasing numbers of children with autism reach adulthood. For these reasons, Autism Speaks is funding a broad range of research and family service projects designed to promote greater independence, employment and quality of life for adults with autism. (Learn more about these projects here.)

Autism, Asperger, and Social Communication Disorder

;Jennifer Wright writes at SFARI:

Most of the children who would lose their autism diagnosis under the diagnostic criteria released last year will fall under the new category of social (pragmatic) communication disorder (SCD), reports a large study of Korean children. The study was published last week in the American Academy of Child and Adolescent Psychiatry1.

SCD is a condition that includes severe social and communication deficits but lacks the repetitive behaviors and restricted interests seen in autism.

It is unclear exactly how the newest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), released amid controversy in May last year, will affect people with autism, despite a plethora of studies addressing the issue.

On 22 January, researchers at the U.S. Centers for Disease Control and Prevention (CDC) reported that as many as 20 percent of people found to be on the autism spectrum using previous criteria would lose this designation with the DSM-5.

In contrast, the Korean study — which the journal rushed into publication the following day — suggests that only 8 percent of children would show a change in diagnosis under the DSM-5. More than three-quarters of these children had a diagnosis of pervasive developmental disorder-not otherwise specific (PDD-NOS), the mildest and arguably least clearly defined autism diagnosis in the DSM-IV.

Unlike the CDC study, these findings rely on careful clinical review of each child’s records and consider several diagnostic categories in both editions of the DSM, says lead researcher Young Shin Kim, associate professor at the Yale Child Study Center in New Haven. “We got rid of every possible variance, which might bring in differences in the diagnosis,” she says.

...
One of the most controversial changes in the new guidelines is the consolidation of three autism spectrum diagnoses in the DSM-IV — autistic disorder, Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS) — into a single label of autism spectrum disorder in the DSM-5.

While the guidelines were still being debated, there was widespread concern that individuals with Asperger syndrome would lose their autism diagnosis. But for many, the final version of the DSM-5 allayed fears that children with an existing diagnosis of autism would no longer qualify for services.

The findings of the Korean study should further reassure people that this is unlikely to happen, says Kim: Only 5 children diagnosed with either autistic disorder or Asperger syndrome under the DSM-IV lost that diagnosis with the DSM-5. Four of those children meet the criteria for SCD and the fifth for ADHD.

“The good news is that people with Asperger syndrome should not have to worry, because they are going to be diagnosed with [autism spectrum disorder],” says Kim. “The problem lies with PDD-NOS, because they do not meet the criteria for repetitive behavior and restricted interests.”

Autism License Plates in Tennessee

One theme of the book I'm writing is that autism touches a bewildering array of policy areas.  For instance, what does autism have to do with automobiles and driving?  From The Chattanoogan:

The Tennessee autism community needs help getting the state’s first Autism Awareness license plate printed. Once a specialty plate project has been approved by the House and Senate, Tennessee requires 1,000 copies be pre-sold before it will be added to the DMV lineup of plates available.

The autism community has less than 150 left to pre-sell in order for this plate to be printed.

The Autism Awareness license plate was the project of four Tennessee moms. All four have children on the autism spectrum and wanted to spread autism awareness in a big way, while also raising money for the autism organizations that have touched their lives.

The funds from the license plate sales will support the missions of Autism Tennessee (formerly the Autism Society of Middle Tennessee), the Autism Society of East Tennessee and the Autism Society of the Midsouth, serving West Tennessee.

The organizations provide resources and supports to families living with autism.

License plates are $35.

For more information, or to order an Autism Awareness license plate, go to autismtn.org  

Utah: A New Bill and an Old Problem

Autism Speaks reports:

Autism Speaks today formally endorsed SB.57, the latest piece of legislation to require certain health plans in Utah, the state with the highest prevalence of autism in the nation, to cover medically necessary treatments.

Utah is one of just 16 remaining states yet to enact autism insurance reform, having instead created a "lottery" under its Medicaid program in which several hundred of the state's estimated 18,000 children with autism are randomly chosen for treatment. The 2014 bill is again sponsored by Dr. Brian Shiozawa, a Salt Lake Republican Senator and past president of the Utah Medical Association.

SB.57 would require state-regulated health plans to cover applied behavior analysis (ABA) up to $36,000 a year for children through age 8, then up to $18,000 a year though age 17. The new bill mirrors a coverage plan Salt Lake Mayor Ben McAdams proposed for county employees in his 2014 budget proposal.

Small businesses with fewer than 50 employees would be exempt from providing the coverage if they could demonstrate it raised the cost of their health plans by 2.5 percent or more. A new study in Missouri showed the impact of its autism insurance reform law during 2013 on total health care costs was 0.2 percent.

Also at Autism Speaks, Andrea Griggs of Murray, Utah, explains what it took to pay the bills for her son Jaxon:

We were faced with tens of thousands of dollars in bills for the first year of his treatment that our insurance company wouldn’t pay a single dime to cover. We went through our entire savings, but still couldn’t afford to pay for his treatments. After much thought and prayer, we came to a very difficult decision for our family. The only way we would be able to give Jaxon the treatments and opportunities that he would need to be happy and successful was to sell our home.

This was not an easy decision for our family to make. We had built this home together from the ground up. We had moved there before our oldest started kindergarten so they would attend the same school with the same kids all through elementary school and even through high school. We had made friends and established a neighborhood family that we all loved. Change is difficult for anyone, but even more so for an individual with autism. This was a very difficult decision for our family.

Georgia Lawmakers' Family Connection to Autism

As other posts have noted, political leaders often get take action on autism because of relatives.  Georgia Health News reports:

Georgia state Sen. Tommie Williams and three other General Assembly members urged their colleagues on Tuesday to pass legislation that would require private health insurance companies in Georgia to cover treatment for autism.

Georgia is one of 16 states that does not mandate coverage for autism.

“It’s time to fix this problem,” said Williams, a Republican from Lyons.

His niece’s daughter, Ava Bullard, is the inspiration for the proposed legislation, called Ava’s Law. The issue has been raised at the state Legislature for the past five years, Williams said.
Williams was joined by Rep. Scot Turner, R-Holly Springs, whose son suffers from autism; Sen. John Albers, R-Roswell; and Rep. Ben Harbin, R-Evans, at a news conference that was part of Autism Day at the Georgia Capitol. Albers and Harbin are lead sponsors of the Ava’s Law bills in their chambers.

“If the bill gets to the floor of the House and Senate, it will pass,” Harbin said.

To bolster their case, the legislators noted that Gov. Nathan Deal supported first-time funding for coverage of autism in the State Employee Health Plan. The proposal allocates $2.4 million for treatment.

New Push for Georgia Mandate

In Atlanta, WGCL reports on a new push for Ava's Law, a proposed Georgia insurance mandate:


CBS Atlanta News

Autism and Insurance in Missouri

A release from the Missouri Department of Insurance:

A new report from the Missouri Department of Insurance shows that the number of individuals treated for autism-related conditions increased by more than 22 percent last year. In 2012, the number of individuals receiving treatment was 2,508 while in 2013 that number increased to 3,070.

A 2010 law, signed by Gov. Jay Nixon, requires health insurance companies to cover specific autism therapies, including applied behavior analysis (ABA). The department's report says autism treatments have increased more than 92.3 percent since 2011.

Using data supplied by health insurance companies, the report says insurance claims for autism-related treatments totaled $8.2 million in 2013. That figure is 26.6 percent higher than claims paid in 2012. Still, the number accounts for a small fraction - just 2/10 of 1 percent - of the over $4 billion in health claims paid by Missouri health insurers during 2013.

The number of licensed professionals providing ABA treatment continues to grow, with over 200 providers currently licensed in Missouri. As a result of greater access to this treatment, payments for applied behavior analysis jumped 264.4 percent from 2011 to 2013. However, the impact on overall health insurance costs remains minimal. In 2013, the average policyholder seeking ABA treatment received $1,704 in autism services, just 4.3 percent of the annual maximum benefit.

"Missouri's landmark autism insurance law continues to deliver benefits for families impacted by autism," said John M. Huff, director of the Missouri Department of Insurance. "Especially encouraging is the continued low impact on overall health insurance claims."

Missouri law does not require health insurance companies to submit their rates to the Department of Insurance, but Huff says the overall claims numbers suggest minimal, if any, impact on the premiums consumers pay.

Other noteworthy findings from the department's report:

• Across all market segments, the average per member, per month (PMPM) cost in 2013 for all autism-related claims was $0.48 and was just $0.22 for ABA treatments.
• More than 1.3 million individuals received coverage from a licensed insurer. Adding public employees and other self-insured entities, the DIFP estimates that as many as 1.6 million individuals have benefited from the autism mandate.
• All policyholders in the large- and small-group markets now have insurance coverage for autism treatments.
• The law allows insurers in the individual market to offer autism coverage as an extra, with an added cost. Some companies offer it as a standard provision in every policy. As a result, about one-third of consumers enrolled in the individual market have this coverage.

The law originally required health insurance companies to cover $40,000 for applied behavior analysis therapy per policyholder, to be adjusted yearly by the director of the Department of Insurance using the Consumer Price Index. The maximum benefit for this year is $42,734, subject to medical need.

The Department of Insurance has extensive resources for families and health care providers on its website. Consumers and providers with complaints or questions are encouraged to call the department's Insurance Consumer Hotline at 800-726-7390 or file a complaint at insurance.mo.gov.

What Happens After Screening?

To a large extent, the literature on autism consists of uncertainty surrounded by gaps in knowledge.  Disability Scoop reports:

Despite a heavy emphasis on expanded screening for autism, a new study suggests that little is known about whether such efforts are leading to earlier diagnosis and treatment.

In a new review, researchers found that routine screening for autism has increased the number of kids flagged as possibly having the developmental disorder, but it remains unclear whether or not children go on to receive further evaluation.

“We found a considerable lack of follow-up on what happens to children who score at high risk for developing autism,” said Amy Daniels, assistant director for public health research at Autism Speaks and the lead author of the study published in the February issue of the Journal of the American Academy of Child and Adolescent Psychiatry.

For the review, researchers looked at 40 studies published between 1990 and 2013 examining the effectiveness of 35 different approaches for screening young children for autism.

They found that few studies addressed whether or not children determined to be at high risk for autism went on to receive a diagnosis or treatment. And among the studies that did look at how kids fared after screening, researchers found that some children were not receiving continued care or referrals to specialists even after being flagged as at risk.

Lunchtime Politics

WCAU-TV in Philadelphia reports:

The mother of a fifth grader at the Jersey Shore says her son has had his school lunch taken from him and thrown away by school staff -- just like a similar case in Utah that made national headlines.

“This to me is a form of bullying," said Amy Ross. Her 10-year-old son Jake attends Smithville Elementary School in Galloway Township, N.J.

As recently as this month, Jake, who has Asperger's syndrome, a form of Autism, has had his hot lunch tossed aside by staff because of an unpaid balance on his lunch account, Ross told NBC10's Ted Greenberg. The mother said the same practice has taken place several times since her son was in third grade and calls it "humiliating."

...

Dr. Annette Giaquinto, superintendent of Galloway Township Public Schools, told NBC10 that Ross had not made a recent complaint about Jake's food being thrown away.

Giaquinto said it is school policy to replace a child's hot lunch with a cheese sandwich if their account is delinquent.

Nothing in the report indicates that the school singled Jake Sutton out -- but treating any 10-year-old that way is pretty stupid -- as is the cheese sandwich option, which is the worst possible thing to give any kid on the gluten-free casein-free diet.

Good News, Bad News for Mississippi Autism Mandate Bill

In Jackson, Mississippi, The Clarion-Ledger reports:

A bill requiring the state and schools employee health insurance plan to cover autism therapies will pass out of the House Appropriations Committee on Tuesday, said its chairman, state Rep. Herb Frierson, R-Poplarville.

Frierson said a subcommittee passed an amended version of House Bill 542 Friday, and he will bring it up for a vote when the full committee convenes Tuesday morning.

 When asked what members might do, he said, “They’ll pass it.”

It then heads to the full House floor, which will make it the longest-surviving legislation of its kind in the eight consecutive years lawmakers have introduced autism insurance bills. Others have died in committee.

But the newly amended language places a hold on the legislation – without killing it entirely – until Frierson’s group can gather more data.

Members want information from other states that have passed similar bills. They also want input from Blue Cross & Blue Shield of Mississippi, which administers the state and schools employee health insurance plan.