Alaska: Gumballs and Insurance

KTUU-TV in Anchorage reports that the Alaska House has just 15 days to act on Senate Bill 74, an insurance mandate. 

Sen. Johnny Ellis (D-Anchorage) says that over the course of a lifetime, early diagnosis and intervention in autism can save the state more than $200,000 in special-education costs, and millions more over the lifetime of someone who suffers from the disorder. That's because intervening early -- before the neural pathways of a child's brain have fully formed -- can disrupt much of the asocial behavior of a child with autism.

Six-year-old Mhina Richardson of Juneau would seem to be living proof of the benefits of early intervention. A year and a half ago, she was diagnosed with autism. Her mother, Beth, took her to therapists. Today, to an outsider, she looks and acts like any healthy, happy 6-year-old. Her mom can still tell that Mhina has challenges, but she also insists the early intervention made a big difference.

"She's doing really well now," Beth Richardson said.

On Friday, Beth, Mhina and perhaps a dozen other people toured the state Capitol handing out gumballs to lawmakers. Their point was that for the price of those gumballs, every child in our state can be insured for autism treatment.

They are urging that lawmakers hold hearings on Senate Bill 74, and their requests have finally been heard. The House Health and Social Sciences Committee announced Friday that it would hold hearings on the measure within the next 10 days.

Update on the CDC Data

At CNN, Sanjay Gupta and John King discuss the CDC data:

 

Also at CNN, Geraldine Dawson of Autism Speaks talks about the data:

At the Los Angeles Times, Alan Zarembo writes:

Some experts questioned the validity of relying on records to estimate the disorder's true prevalence.

David Mandell, an autism expert at the University of Pennsylvania, said the CDC's numbers primarily reflect the degree to which the diagnosis and services have taken hold in different places and among different groups.

"As the diagnosis is associated with more and more services, this becomes a less and less rigorous way to determine the prevalence of autism," he said, referring to the CDC's methods.
The federal agency found that Utah, which has widespread screening programs, had the highest rate—1 child in 47. The state was closely followed by New Jersey, which prides itself on its autism services, at 1 in 49.

At the bottom was Alabama, one of the poorest states in the country. Its autism rate fell 20% between 2006 and 2008 — from 1 in 167 to 1 in 208.

CDC officials acknowledged the limitations of their analysis. In surveillance areas where researchers had access only to health records, and not school records, prevalence estimates were generally lower. Including the capital city of Raleigh in North Carolina's surveillance area dramatically increased the state's rate.

"Our study really is more of a study of demographic differences and population differences," said Jon Baio, a CDC epidemiologist and principal investigator on the report.

Reuters TV on CDC Prevalence Data

Sharon Begley of Reuters talks about the CDC report on prevalence:

 

Michigan Mandate Passes

The Detroit Free Press reports:

Insurers must provide coverage for therapy for Michigan's autistic children beginning Oct. 1 as part of a package of bills passed Thursday by the Michigan Legislature.

The bills, which are expected to be signed by Gov. Rick Snyder, also create a state fund to reimburse insurers for treatment costs.

"This is a big day," said David Meador, executive vice president and chief financial officer for DTE Energy. His 15-year-old daughter, Maribel, is autistic.
...
Advocates for the insurance mandate had failed in several earlier attempts to win legislative approval, largely because of opposition from business groups opposed to insurance mandates and worried about costs.

But the campaign built significant momentum in the last year with backing from Snyder and Lt. Gov. Brian Calley, who has an autistic daughter. The autism bills were approved Thursday with broad bipartisan support.

They passed with a 91-19 vote in the House and 30-8 in Senate.

The Detroit News reports:

In Michigan, about 15,000 children and teens are diagnosed with autism disorders. Autism is diagnosed by making judgments about a child's behavior; there are no blood or biologic tests. Its cause remains a mystery.Calley said passage of the bills will benefit not only families but the state of Michigan. The state will realize $13 billion to $15 billion in savings over the lifetimes of children who will now be able to receive therapies needed to reach their full potential, he said.

"We know that half of (children with autism) can reach independence, reach typical function," Calley said.

Calley championed the three-bill autism package as the father of a small daughter with autism.

"This will benefit other families much more than mine," Calley said. "I'm in a fortunate position to have resources and connections, to be (among) the 1 or 2 percent of families in Michigan that have access to therapy.

"The vast majority (can't afford treatment) so they get this diagnosis and they don't get the therapy they need. That's why you see divorces and why families with autism are much more likely to be in poverty."

Autism and Cost

Autism Speaks reports:

Autism Speaks, the world’s leading autism science and advocacy organization, today announced preliminary results of new research that estimates autism costs society a staggering $126 billion per year (U.S.) – a number that has more than tripled since 2006, and annually in the U.K. has reached more than £34 billion (equivalent to $54 billion U.S.). The costs of providing care for each person with autism affected by intellectual disability through his or her lifespan are $2.3 million in the U.S. and £1.5 million ($2.4 million) in the U.K. The lifetime costs of caring for individuals who are not impacted by intellectual disability are $1.4 million in the U.S. and £917,000 in the U.K. (equivalent to $1.46 million). The Autism Speaks-funded research, conducted by researchers Martin Knapp, Ph.D., of the London School of Economics, and David Mandell, Sc.D., of the University of Pennsylvania, will be presented at the international conference “Investing in our Future: The Economic Costs of Autism,” hosted by Goldman Sachs in collaboration with the Child Development Centre and Autism Speaks, on March 31 in Hong Kong.

The CDC Report

An earlier post mentioned the CDC finding that about 1 in 88 children has been identified with ASD..  CDC has now put the materials online.  The scientific report is here.  The community report is here.  Here are key findss from the latter's executive summary (emphasis added):

Here are the key findings from this report:

• More children were diagnosed at earlier ages—a growing number of them by 3 years of age. Still, most children were not diagnosed until after they were 4 years of age. On average, diagnosis was a bit earlier for children with autistic disorder (4 years) than for children with the more broadly defined autism spectrum diagnoses or pervasive developmental disordernot otherwise specified (4 years, 5 months), and diagnosis was much later for children with Asperger disorder (6 years, 3 months).

• As has been detailed in previous reports, we also found that almost five times as many boys were being identified with ASDs as girls (1 in 54 compared to 1 in 252). Research exploring why there are differences in the identified prevalence among males and females is ongoing and knowing that the conditions are more common among boys can help direct our search for causes.

• The largest increases over time were among Hispanic and Black children. We suspect that some of this was due to better screening and diagnosis. However, this finding explains only part of the increase over time, as more children were identified in all racial and ethnic groups.

• The majority (62%) of children the ADDM Network identified as having ASDs did not have intellectual disability. The largest increases during 2002 to 2008 were among children without intellectual disability (those having IQ scores higher than 70), although there were increases in the identified prevalence of ASDs at all levels of intellectual ability.

The New York Times reports:

C.D.C. researchers did not meet any of the children they judged to have an autism spectrum disorder. The team made the decisions based on evaluations of the children, drawn from 14 states. The estimated rates in those states varied widely, from one in 210 children in Alabama to one in 47 in Utah.

“This is a fourfold difference,” Dr. Éric Fombonne, a psychiatrist at McGill University and Montreal Children’s Hospital, said in an e-mail. “It means that ascertainment is unequal across states. Thus, in the next surveys, as ascertainment will most likely improve where it is currently low, average rates are bound to increase. Is there, in addition to this, a real increase in incidence? It’s possible, but cannot be determined from the study design.”

One in 88

Maggie Fox writes at National Journal:

One in 88 U.S. children have been diagnosed with some sort of autism spectrum disorder, from mild types of Asperger's syndrome to severe disability, the U.S. Centers for Disease Control and Prevention said on Thursday.

CDC said that this is a 23 percent increase in the numbers since the last report in 2009, and at least some of the rise is because more children are being screened and assessed. And more children are being diagnosed by age 3, the report finds.
...

“This information paints a picture of the magnitude of the condition across our country and helps us understand how communities identify children with autism,” HHS Secretary Kathleen Sebelius said in a statement. “That is why HHS and our entire administration has been working hard to improve the lives of people living with autism spectrum disorders and their families by improving research, support, and services.”

CDC reports data from 2008, which show 11.3 per 1,000 8-year-old children have been identified as having an autism spectrum disorder. "This marks a 23 percent increase since the last report in 2009. Some of this increase is due to the way children are identified, diagnosed, and served in their communities, although exactly how much is due to these factors is unknown," CDC said in the statement.

Michigan Mandate to Move to House Floor

The Detroit News reports on Michigan mandate legislation:

"There seems to be an effort to speak ill of federal health insurance mandates while at the same time we're having conversations of state-level mandates," said Dave Jessup, director of government relations for the Small Business Association of Michigan, which opposes the autism bills. "A mandate is a mandate whether it be a federal mandate or a state mandate."

The House Families, Children and Seniors Committee on Tuesday passed  Senate Bills 414, 415 and 981 after lowering the amount the state would reimburse insurers and third-party administrators annually for certain autism therapies.

Lt. Gov. Brian Calley, a Republican whose daughter has autism, said a mandate is necessary to stop a brain drain of autism specialists who get trained in Michigan but move to states with insurance mandates. [emphasis added]

...

"We have no idea how much it's going to cost," said Sen. Phil Pavlov, R-St. Clair Township, who voted against the bills. "It's wide open."

There are an estimated 15,000 children in Michigan with some form of autism, but not all children will require the expensive one-on-one speech and occupational therapy that bankrupts some families, Calley said.

"It doesn't really make sense to expect utilization will always be capped out," Calley told the committee.

The legislation is drawing opposition for different reasons. Business groups oppose the individual mandate, fearing it will drive up insurance premiums on top of new regulations in the federal health care reform law being argued before the Supreme Court this week and open the door to new mandates in the future.

"The question is: 'How do you say yes to some (mandates) and no to others?'" asked Wendy Block, health policy director for the Michigan Chamber of Commerce.

A Parity Argument Against the Michigan Mandate

MLive reports:

Mental health advocates said Tuesday that bills mandating insurance coverage for autism spectrum disorder (ASD) diagnosis and treatment should not have moved forward because they didn't include a provision extending the mandate to all mental health disorders.

Michigan Partners for Parity, a statewide coalition with more than 60 members, issued a press release soon after the three-bill package passed a state House of Representatives committee.
The group advocates for comprehensive mental health coverage, including autism.

"We don't understand why lawmakers won't consider all the facts on this issue," said Mark Reinstein, spokesperson for Michigan Partners for Parity and executive director of the Mental Health Association in Michigan.
...
Lt. Gov. Brian Calley, an outspoken proponent of the autism package, said Tuesday that parity advocates should get involved in the process by getting comprehensive legislation introduced.
But, he noted, adding parity to the existing autism package would likely cause the bills to fail.

Committee members Reps. Maureen Stapleton (D-Detroit) and Dian Slavens (D-Canton) offered amendments that would have expanded the scope of the mandates, but both were voted down.

California Provider Abruptly Closes

A California regional center vendor has abruptly gone out of business. KTLA reports:

A series of Southern California treatment centers for children with autism closed Friday without warning, leaving the parents of the young patients wondering what happened.

Wellspring Health Care and Home Care provided treatment for thousands of children with autism across Southern California until Friday, when its locations shut their doors, apparently for good.

Some employees told KTLA they haven't been paid for a month. Others said they received an email last week informing them they wouldn't be paid Friday.

Those employees traveled to Wellspring's corporate office at 16713 Roscoe Blvd. in North Hills only to find the storefront abandoned, with a sign on the door saying Wellspring is out of business.

Caroline Simha -- the mother of a child with autism -- wonders what she will do now that Wellspring is no longer open.

"When the services are cut, it's like you don't know where to go," she told KTLA.

Wellspring founder and CEO Leo Landeverde [sic:  correct spelling is Landaverde] issued an email to his employees last week saying they wouldn't be paid due to "cash flow problems."

There is now a Facebook group, "Former Clients of Wellspring." 

Last year, a Wellspring employee was a suspect in an abuse case.  Last week, he pleaded guilty.  (Mugshot here.)

Multiple Problems Facing ASD People

Previous posts have examined bullying of ASD kids. The Kennedy Krieger Institute reports:

Today, the Interactive Autism Network (IAN), www.ianproject.org, the nation's largest online autism research initiative and a project of the Kennedy Krieger Institute, reports preliminary results of the first national survey to examine the impact of bullying on children with autism spectrum disorders (ASD). The results show that 63 percent of children with ASD have been bullied at some point in their lives. These children, who are sometimes intentionally "triggered" into meltdowns or aggressive outbursts by peers, are bullied three times more frequently than their siblings who do not have ASD.

"These survey results show the urgent need to increase awareness, influence school policies and provide families and children with effective strategies for dealing with bullying," said Dr. Paul Law, director of the IAN Project at the Kennedy Krieger Institute. "We hope that this research will aid efforts to combat bullying by helping parents, policymakers and educators understand the extent of this problem in the autism community and be prepared to intervene." (For more insights on the survey results, visit this online discussion with Dr. Connie Anderson, IAN's community scientific liaison.)

Nearly 1,200 parents of children with ASD completed the survey. Findings show that these children (ages 6 to 15 years) are especially vulnerable to bullying, and point to a number of risk factors.

The mortality rate among ASD people may be higher than in the general population. Karen Weintraub writes at The Boston Globe:

But science and medicine are catching up with parents’ understanding of the condition, and a more nuanced view is slowly emerging: Autism is not just a brain problem. Many people with autism, which affects 1 in 110 American children, are profoundly unwell, with physical symptoms ranging from sleep disorders to seizures, energy and immune issues to digestive troubles such as those that still occasionally plague Walt. And treating those symptoms can markedly improve the lives of autistic children, even if doesn’t cure them.

“There’s a whole slew of other symptoms,’’ besides the communication challenges, social impairments, and repetitive behaviors that are the core, defining traits of autism, said Dr. Gary W. Goldstein, president and chief executive officer of the Kennedy Krieger Institute, a Baltimore research institute that focuses on disorders of the brain, spinal cord, and musculoskeletal system. “A fair percentage have gastrointestinal problems, at least when they’re young, that may even outweigh the autism.’’
...
People with autism were once thought to be intellectually disabled as well. Goldstein said he used to think that 70-80 percent of people on the spectrum had intellectual deficits; now he believes that number is closer to 5-10 percent, or even lower. Walt, who was recently able to sit through his first IQ test, has normal intelligence, even though he struggles to communicate all he know

Voucher Bill in Georgia

AP reports:

Special needs children in Georgia may soon be able to forgo the required year of enrollment in a public school before they can receive a voucher that uses taxpayer dollars to pay for private school.

... 

Georgia's voucher program began in 2007 and has more than 2,500 students enrolled. That's up from 1,600 students in 2009.

The law defines special needs as students with an individualized education program written by the school district. That can include children who are autistic, deaf, blind, disabled and emotionally disturbed. It also can apply to a student with a learning disability or speech impairment.

Under the legislation, the state Board of Education would be responsible for deciding whether a child's medical condition warrants waiving the one-year public school enrollment requirement. The board would also be able to force the local school district to speed up the process of writing an IEP for the child, which can take months depending on the student's disability and often involves numerous meetings with parents and experts to work out the best strategy for teaching the student.

...

National experts say 11 states, Washington, D.C., and Milwaukee, Wis., offer voucher programs for low-income or special-needs students. No state has a universal voucher program for all students.

Georgia lawmakers have until Thursday to approve all remaining legislation before the session ends, including the voucher bill. It passed both the House and Senate, but senators amended the measure slightly, which means it must be approved by the House again before it goes to the governor's desk.

Medicaid Ruling in Florida

AP reports:

A federal judge has ordered that the agency that administers Medicaid in Florida cover an autism treatment it had previously rejected.

U.S. Judge Joan Lenard ruled Friday that applied behavioral analysis be covered by Medicaid. The Florida Agency for Health Care Administration had refused to cover ABA for three plaintiffs, claiming it was an "unproven treatment."

Lenard held that ABA was a proven and highly effective treatment of children with autism. ABA

uses techniques to help people with autism develop relationships and learn specific skills.
Attorney Neil Kodsi, who represents the plaintiffs, says the judge's order isn't just a victory for Florida's 8,000 autistic children but could set a precedent for cases throughout the country.
Emails seeking comment from the Florida Agency for Health Care Administration weren't immediately returned.

Mandate Passes Kansas House

The Topeka Capital-Journal reports on Kansas mandate legislation:

Health care coverage long-sought by the parents of autistic children could become mandatory in Kansas if a bill that passed the House 92-30 this week is signed into law.

The bill, authored by Rep. Arlen Siegfreid, R-Olathe, requires that private health insurers provide coverage for behavioral therapy for children up to age 19 who are clinically diagnosed with conditions along the autism spectrum.

When Rep. John Rubin, R-Shawnee, brought it to the House floor, it touched off more than four hours of debate, with opponents saying the mandate was burdensome to business and unfair to children on public health care.

But Rubin successfully argued that study after study has shown autistic children who receive early treatment are more likely to be mainstreamed in school and employed after school, which saves money.

...The House Democrats came out in strong support of the bill, with House Minority Leader Paul Davis, D-Lawrence, saying raising an autistic child provides "some of the most unbelievable challenges any parent can have.”

Rep. Judith Loganbill, D-Wichita, said some insurance providers cover [filtered word] implants for erectile dysfunction and they should be “called to task” for not covering autism in children.

"What we're asking them to do is, pardon my French, suck it up," Loganbill said.

Walking with Troy

At The Orlando Sentinel, George Diaz writes:

Troy Blevins walks in pain. He walks with purpose. He walks for his sons, and for the thousands of other children whose lives have been muted in heartbreaking silence.

One foot forward for his son Blake, 11. The next step forward is for his son Ty, 9. Both are autistic.

Blevins has been walking since Feb. 26. He started from his home in St. Augustine, marching onward toward the steps of the White House. The goal is to get there sometime between April 5 and April 10. It's a 749-mile journey, etched in a father's love and a grassroots desire to make a difference.

The hope is to meet President Obama, not for a fawning photo op, but for the opportunity to talk to the President in hopes of raising autism awareness.

"If I can't talk to the president, I want to talk to the most powerful person in the country — Oprah," Blevins joked by phone over the weekend.

...

Blevins isn't looking to play the blame game — though it's natural to think about environmental factors — but wants to make sure the powers that be don't dawdle on trying to figure out what the heck is going on.

At 44, Blevins has the financial means to take a work break — he is a business development director for Scott Lagasse Jr., a driver on the NASCAR Nationwide circuit. Blevins has also raised funds through his Facebook page (Walking with Troy), asking 100 friends to donate $100 each to pick up the costs of hotels and meals.

Studies to Know for an IEP

Dr. Jonathan Tarbox of CARD talks to Shannon Penrod about ABA literature that parents might want to consult before their next IEP meeting.  Here are the studies that he mentions:

• Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.
• Sallows, G., Graupner, T. (2005). Intensive behavioral treatment for autism: Four-year outcome and predictors. American Journal on Mental Retardation, 110, 417-436.
• Cohen, H., Amerine-Dickens, M., Smith, T. (2006). Early intensive behavioral treatment: Replication of the UCLA Model in a community setting. Journal of Developmental and Behavioral Pediatrics, 27, S145-S155.
• Eikeseth, S., Smith, T., Jahr, E., Eldevik, S. (2007) Outcome for Children with Autism who Began Intensive Behavioral Treatment Between Ages 4 and 7. Behavior Modification, 31, 264-278.
• Eldevik, S., Eikeseth, S., Jahr, E., Smith, T. (2006). Effects of low-intensity behavioral treatment for children with autism and mental retardation. Journal of Autism and Developmental Disorders, 36, 211–224.
• Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G., Stanislaw, H. A. (2005). Comparison of intensive behavior analytic and eclectic treatments for young children with autism. Research in Developmental Disabilities, 26, 359–383.
• Eikeseth, S., Smith, T., Jahr, E., Eldevik, S. (2002). Intensive behavioral treatment at school for 4- to 7-year-old children with autism: A 1-year comparison controlled study. Behavior Modification, 26, 49-68.
• Eldevik S, Hastings RP, Hughes JC, Jahr E, Eikeseth S, Cross S. (2009)  Meta-analysis of Early Intensive Behavioral Intervention for children with autism. Journal of Clinical Child and Adolescent Psychology, 38, 439-50.
• Eikeseth, S., (2009). Outcome of comprehensive psycho-educational interventions for young children with autism. Research in Developmental Disabilities 30. 158–178
• Reichow, B., & Wolery, M. (2009). Comprehensive synthesis of early intensive behavioral interventions for young children with autism based on the UCLA Young Autism Project model. Journal of Autism and Developmental Disorders, 39, 23-41.

Also see:

• Reichow, B. (2012) Overview of Meta-Analyses on Early Intensive Behavioral Intervention for Young Children with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 42, 512-20.

Insurance Action in the States

In New Hampshire, the Union Leader reports: 

The Senate has voted to keep insurance mandates for midwives, autism services, hearing aids and bariatric surgery — for now.

Senators voted 19-5 to recommend House Bill 309 for further study. The move prevented a vote to pass the bill.

In a passionate debate ahead of the vote, opponents of the bill said it was wrong to force people to pay out of pocket for hearing aids and autism coverage, which can be costly. In addition, they noted that a midwife-assisted birth is generally less costly than a hospital birth.

Supporters, however, argued that every mandate made insurance more expensive for everyone, and for some, unaffordable.

The Kansas Health Institute reports:

After lengthy debate that went into the evening, the Kansas House today endorsed a bill that would require that insurance companies cover autism disorders.

House BIll 2764, as amended during the floor debate, also would require autism coverage by the state's HealtWave program. HealthWave covers children in the Kansas Medicaid and Children's Health Insurance programs.

Estimated cost of the HealthWave provision was about $26 million, with about $12 million of that coming from the State General Fund. The balance would be covered by federal Medicaid dollars.

Some opponents of the measure argued that the annual cost to the state and federal governments could reach $57 million. More precise estimates of the cost weren't available to members when they voted on the measure and some cited that lack of information as good reason to send the bill back to a committee for more study.

A motion to do that however, failed by a margin of almost two to one

Video of floor discussion of the Iowa mandate legislation:

A Young Advocate in Minnesota

In Minnesota, Sue Austreng of ABC Newspapers reports on Kari and Ryan Hadley, whose son Hunter has benefited from state funding of ABA.  That funding is now in jeopardy.

So Kari and Ryan brought Hunter along when they visited the state Capitol Feb. 28.

On that day – and on every Tuesday during the 2012 legislative session – families affected by autism partner with the Autism Advocacy and Law Center as they join forces with the Minnesota Consortium for Citizens with Disabilities to meet with legislators, share their stories and plead for continued coverage for autism in the state’s healthcare budget.

Hunter spoke to legislators Feb. 28, telling them, “Thank you for allowing me to have ABA therapy. Without therapy I would not be able to tell my mom and dad I love them.”

“He was so brave and we are so proud of him,” Kari said. “We just want other kids to be able to have ABA, too, if they need it. It really does help. And we couldn’t have done it without state funding.”

...

Hunter’s mom put the need for continued ABA coverage this way, “That’s why we’re asking the legislature to continue funding this therapy,” Kari said. “They can spend a little money now (to provide the therapy) or they can take care of these kids for life.”

Credibility Battles

Anna Kirkland has published "Credibility Battles in the Autism Litigation" in the April 2012 Social Studies of Science.  The abstract:

That vaccines do not cause autism is now a widely accepted proposition, though a few dissenters remain. An 8-year court process in the US federal vaccine injury compensation court ended in 2010 with rulings that autism was not an adverse reaction to vaccination. There were two sets of trials: one against the measles–mumps–rubella (MMR) vaccine and one against the mercury-based preservative thimerosal. The MMR story is more widely known because of publicity surrounding the main proponent of an MMR–autism link, British doctor Andrew Wakefield, but the story of thimerosal in court is largely untold. This study examines the credibility battles and boundary work in the two cases, illuminating the sustaining world of alternative science that supported the parents, lawyers, researchers, and expert witnesses against vaccines. After the loss in court, the families and their advocates transformed their scientific arguments into an indictment of procedural injustice in the vaccine court. I argue that the very efforts designed to produce legitimacy in this type of lopsided dispute will be counter-mobilized as evidence of injustice, helping us understand why settling a scientific controversy in court does not necessarily mean changing anyone’s mind.

Police and ASD People

The Detroit News reports:

Felony charges against an autistic Jackson County teen accused of cutting two sheriff's deputies with a nail file have struck a chord with autism advocates in Michigan.

They say the case highlights the need for law enforcement officers to get more training about the brain disorder, which affects about 15,000 children and adults in the state.
Michigan doesn't require police officers or first responders to get specific training for dealing with autistic children and adults. But experts say as more children on the autism spectrum reach adulthood, it poses more challenges for law enforcement officials and could potentially make stressful situations even worse.

Zachary Maxson, 17, faces two counts of assaulting, resisting and obstructing a police officer causing injury and one charge of domestic violence, a misdemeanor, in connection with the Feb. 9 incident.
...

"Here's a person who may not understand (law enforcement's) role in society," said Dennis Debbaudt, a Detroit native and founder of Autism Risk & Safety Management, which does training for agencies across the country. He also has a son who is autistic.

"There's a reason law enforcement drives marked vehicles and wears uniforms. They want people to know they're the police. But here's a segment of the population that doesn't know that."
...

Eight states require training for police or first responders in dealing with people with autism, mental illness or disabilities, according to Autism Speaks, the nation's largest autism advocacy group. Some agencies, such as the Ottawa Police Service in Canada, even have autism registries, where relatives can sign up loved ones so if a situation arises, police are ready.

And while Michigan doesn't require it, autism advocacy groups are teaming up more and more with law enforcement across the state to offer training.

The Autism Alliance of Michigan hosted a conference with Debbaudt last month for more than 200 first responders, educators and community professionals. Wayne County sent officers and the training was webcast to locations including Macomb County, Traverse City, Berrien Springs and Cadillac.

Economic Impact on Families

An article in Pediatrics:

Implications of Childhood Autism for Parental Employment and Earnings
Zuleyha Cidav, PhDa,b,
Steven C. Marcus, PhDc,d, and
David S. Mandell, ScDa,b

OBJECTIVE: To examine changes in parental labor force participation, hours of work, and annual earnings associated with childhood autism spectrum disorders (ASD).

METHODS: We used the 2002–2008 Medical Expenditure Panel Survey to examine parental labor market outcomes of children with ASD relative to children with another health limitation and children without health limitations. A logit model was used to estimate parental labor force participation. A tobit model was used to estimate parental hours of work and earnings.

RESULTS: On average, mothers of children with ASD earn 35% ($7189) less than the mothers of children with another health limitation and 56% ($14 755) less than the mothers of children with no health limitation. They are 6% less likely to be employed and work 7 hours less per week, on average, than mothers of children with no health limitation. There were no statistically significant differences in fathers’ labor market outcomes across 3 groups. On average, children with ASD are 9% less likely to have both parents working. Family earnings of children with ASD are 21% ($10 416) less than those of children with another health limitation and 28% ($17 763) less than those of children with no health limitation. Family weekly hours of work are an average of 5 hours less than those of children with no health limitation.

CONCLUSIONS: Families of children with ASD face significant economic burden. Given the substantial health care expenses associated with ASD, the economic impact of having lower income in addition to these expenses is substantial. It is essential to design universal health care and workplace policies that recognize the full impact of autism.

Independence

Roger Phillips writes at The Stockton Record:

During a freewheeling daylong discussion of autism in young adults Saturday, there was one message above all that Peter Gerhardt was trying to transmit.

The educational system, he said, is failing to adequately prepare children with autism for independence as adults.

"I'm very tired of meeting adults with autism who can do a math worksheet properly but can't cross the street by themselves," Gerhardt told an audience of perhaps 200 educators and parents - and a few young adults with the disorder - at Saturday's annual autism forum at the San Joaquin County Office of Education.

Gerhardt, director of a school program in New York that serves adolescents with autism, has worked in the field for more than 30 years. He visited Stockton to drum home the point that the educational system that is serving children with autism is inadequately preparing them.
...

He said he does not like to classify autistic people as "high functioning" or "low functioning" because he knows autistic people with IQs of 140 who are "not functional" and others with IQs of 40 who are "very functional."

Independence, he said, should be the focus of all Individual Education Plans written by school officials for their autistic clients, because independence is the key to fulfillment.

"We need to focus on skills that really make a difference in a person's life," Gerhardt said. "If we're not providing skills that transfer out of the classroom, that's a real problem. When is the last time any of you wrote an IEP where the goal was happiness?"

More on the "Jump Street" Autism Slur

A previous post noted that the trailer for 21 Jump Street uses "autistic" as a punchline.

There is a petition to ask Columbia pictures for an apology.

People can make comments on the movie's Facebook page.

A post on CNN iReport:

After watching the new "21 Jump Street" movie trailer, I am so upset. I don't understand why it's okay to disrespect and make fun of people with autism? In the clip Ice Cube asks jonah Hill "What are you Autisitic?" As parents of three boys with autism, this is not acceptable. The ironic thing is, one of the things that our boys love is movies and movie logos, including Ice Cube's "Are We There Yet?" and here he is, making fun of autism. How shameful. Our boys spend hours drawing Sony, Columbia and MGM logos and ask every day when they can visit the studios and see the logos... little do they know they are making jokes about them. How sad. Now what do I tell them?

Leading Researchers on DSM

A number of posts have dealt with pending changes in the definition of autism in DSM-5. In The New Scientist, Fred Volkmar urges caution:

The way DSM-IV is formulated means there are over 2000 combinations of the 12 criteria that at the minimum threshold of six yield an autism diagnosis.DSM-5 proposes collapsing autism, Asperger's and PDD-NOS into a single "autism spectrum" category, combining and reducing criteria, vastly cutting the number of combinations that can lead to an autism diagnosis. This prompted me and my colleagues to reanalyse the DSM-IV field-trial data from 1994 for an upcoming edition of the Journal of the American Academy of Child and Adolescent Psychiatry. We found that many people, particularly the more cognitively able, would lose their diagnosis under the new regime.

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What might this mean? It is possible that support for those in need will be hit, particularly in the US, where a diagnosis can trigger health insurance. Secondly, such a radical change would make it difficult to interpret the vast body of work done using DSM-IV - in 1993 there were about 390 peer-reviewed publications on autism. Last year over 2100 were produced.

Finally, the change of name to autism spectrum would suggest a broadened diagnostic concept when, if our reanalysis is correct, the opposite is the case. These are troubling issues. For such a major project, a more scientifically informed and engaged revision process is needed.

Frencesca Happe argues for change:

Anomalies in DSM-IV criteria for autism and other pervasive developmental disorders (PDDs), which includes the subgroups of autistic disorder, Asperger's and PDD-NOS, have led to clinical inconsistency, leading to wide variations in how diagnoses of these are made. One study found it was the clinic attended that best predicted which label was given.

 Most people diagnosed with Asperger's actually meet the DSM-IV criteria for autism. And research suggests there are no major differences between those with early language delay and those without - the feature differentiating autism and Asperger's in DSM-IV. The current split into three categories has little support in terms of genetic, neural, cognitive and other differences. Clinicians show little agreement in telling the three apart but are good judges of what is on the autism spectrum.

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There is concern that those with Asperger's or PDD-NOS might not meet ASD criteria. This is not the aim. With fellow members of the DSM-5's neurodevelopmental disorders work group, I am working hard to ensure the full autism spectrum is well recognised. We have proposed a new category of "social communication disorder" for those with some of the difficulties of autism but without rigid and repetitive behaviour - currently poorly described by the very diverse DSM-IV category of PDD-NOS. We are also seeking to aid recognition of ASD in adults coming for first diagnosis.

"Autistic" as a Slur

At The Examiner, Melissa Teodorovic writes about the trailer for 21 Jump Street (the slur is at 3:38):

The trailer for the movie 21 Jump Street was recently released, and even though some moments appeared to be funny, the laughs ended for many, when Ice Cube's character attempted to insult another by asking him if he was "autistic". The "joke" has upset many parents of children with autism, as well as many adults on the spectrum. Some have expressed that they fear it will potentially make way for others (especially young people) to think that it's acceptable to call someone "autistic" in order to insult their intelligence.

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Many parents have also felt let down over the fact that the movie features a cameo by Holly Robinson Peete, who is not only a mother to a child with autism, but also an active member of Autism Speaks, and an advocate for children with autism. Many have wondered how she feels, and why she would be a part of a movie that would try to make fun of autism. She recently responded to this question by saying that the line was not in the script she read, and that the cast ad-libbed a lot of the scenes, she also added that, "autism is SO not a punchline" http://img.fae.ro/d0c1a7.jpeg.

See the Facebook boycott page.

"Political autism" has sometimes cropped up as a term of abuse, mostly in Britain, though sometimes in the United States.

Canada to Deport Family Because of Autistic Child

The Mississauga News reports:

A man employed by a Mississauga company will be deported from Canada with his family because of the potential health care and social services costs associated with their 12-year-old autistic son.

For Sungsoo Kim, who has lived in Hamilton with his family for nine years, being rejected for permanent residency is devastating. He came to Canada on a student permit and has remained here on work permits.

Kim is working as the IT help assistant administrator for Pattison Outdoor Advertising at its Mississauga headquarters. His work permit expires in July.

Daughter Lisa, 17, and son Taehoon, 12, were 8 and 3, respectively, when the family arrived in Canada. Taehoon was diagnosed with autism in 2005 or 2006, his father says.

Officials informed Kim in January that he doesn’t meet Canada’s immigration requirements because Taehoon “is a person whose health condition, autism, might reasonably be expected to cause excessive demand on health or social services.”

Since his son is inadmissible, so is Kim.

This case is not the first.  See coverage of similar stories in The Star (Toronto) and The Ottawa Citizen.

Debate Over Restraint and Seclusion

A few days ago, the Education Department issued a report with data on restraint and seclusion. Last week, the American Association of School Administrators released a new report entitled "Keeping Schools Safe: How Seclusion and Restraint Protects Students and School Personnel."  From the release:

The study documents the importance of preserving school districts’ ability to use seclusion and restraint techniques in situations where a student is in danger of hurting himself, another student, or a school staff member.

“These techniques enable schools to educate students with severe behavioral difficulties in the least restrictive environment possible,” said Daniel Domenech, AASA executive director, in introducing the report. “These are practices that keep everyone safe.

At Education Week, Nirvi Shah reports:

However TASH says the AASA report "is unsubstantiated, ill-informed and reckless." TASH, formerly The Association for the Severely Handicapped, was particularly incensed over a statement in AASA's report that implies that the choice for some students is to either be restrained and/or isolated or institutionalized.

The National Disability Rights Network has a new report of its own, "School Is Not Supposed to Hurt."  From the executive summary:

ED [The US Department of Education] is also in the unique position to pull together a national summit of researchers, educators, mental health professionals and others to discuss whether restraint and seclusion has any therapeutic value and to develop evidence-based best practices to prevent and reduce the use of restraint and seclusion. ED should collaborate with the Substance Abuse and Mental Health Services Administration (SAMHSA) in this effort because SAMHSA has successfully supported efforts over the last decade to reduce the use of restraint and seclusion in mental health facilities. ED should fund demonstration projects to test what works.

ED can prevent future injuries and deaths by investigating restraint and seclusion (even where there is no individual complaint) and requiring school districts to take appropriate corrective action.

Back in January, the Autism National Committee released a report titled "How Safe Is the Schoolhouse?"  From the executive summary:

Today, there are 29 states with statutes and regulations providing meaningful protections against restraint and/or seclusion. (In 2009, there were only 22.) These have the force of
law and must be obeyed. Even the 29 states offer varying protections, with key safeguards present in some states and missing in others. There are 13 states with nonbinding guidelines, but these lack the force of law and can be readily changed by the State Department of Education. They are not the equivalent of statutes or regulations.

Michigan and Iowa Senates Pass Mandates

MLive reports on the Michigan insurance legislation:

The cost of mandating health insurers to cover autism diagnoses and treatment became an issue today in the Michigan Senate, which ultimately approved the idea despite objections from a handful of Republicans.

The three-bill, bipartisan package gathered support from Democrats, though some argued that the coverage should be extended to other mental health disorders.

But a group of Republicans objected, saying the bills could cost too much over time.

Two of the measures passed 29-9 -- and the other 28-10 -- with all objections coming from the GOP side of the aisle.

The bills require insurers to cover an autism diagnosis and treatment. At the same time, they direct the state Licensing and Regulatory Affairs Department to create an autism coverage incentive program through which insurance carriers and third-party administrators could see reimbursement for paid claims.

The cost is expected to come in at $15 million in the first year.

The Fort Dodge Messenger reports on Iowa:

Watching his 10-year-old grandson live with autism inspired state Sen. Daryl Beall to work on making the treatment of that condition more affordable for Iowa families.

The Fort Dodge Democrat's efforts advanced significantly on Tuesday when the state Senate passed a bill requiring insurers to provide coverage for autism treatments.

''It was the proudest vote I've cast in 10 years,'' Beall said Tuesday evening.

The bill that passed 43-7 late Tuesday afternoon is a followup to a measure Beall wrote and successfully worked to pass in 2010 that he called Drew's Law in honor of his grandson, Drew Beall. That law makes insurance coverage of autism treatment available to the children of state government employees. Drew Beall, however, is not eligible for the coverage under that measure.

Beall said his latest proposal had ''tremendous bipartisan support'' in the Senate. He said Sens. Bill Anderson, R-Sioux City; Rick Bertrand, R-Sioux City; and Tom Reilly, D-Oskaloosa; ''all spoke passionately for the bill.'

Emken Gets Endorsement

Elizabeth Emken, who created the AutismVotes website for Autism Speaks, is running for the US Senate from California.  The San Jose Mercury News reports:

The California Republican Party on Monday endorsed Elizabeth Emken of Danville over several other GOP contenders to unseat U.S. Sen. Dianne Feinstein, D-Calif.

"This was a humbling experience and a tremendous honor to receive the unanimous support of the board," she said Monday. "I'm looking forward to the challenge ahead, as well as working in partnership with the CRP as we head toward victory together."

As many as half a dozen other Republicans are in the race against Feinstein, including Oceanside businessman Dan Hughes and Santa Monica businessman Al Ramirez.

A couple of weeks ago, Joe Garofoli reported at The San Francisco Chronicle:

Yeah, Feinstein is popular, but according to the latest Field Poll, she’s in slightly worse shape than Sen. Barbara Boxer was in a similar point in her 2010 re-election.

Emken is unafraid She’s spent more than a decade as an advocate for those with autism. Her 19-year-old son, who will join her on the campaign trail, is autistic and she has two younger children. Plus, she’s hired veteran campaign hands with experience on statewide campaigns and said her Washington, D.C. experience advocating for autistic issues will give her a national fundraising base.

Will be interesting to see how this campaign develops and if any national money and names jump on board.

Seclusion Rooms

A recent post involved seclusion in Ohio.  In Columbus, WCMH-TV reports on seclusion rooms in local schools:

 

Report on Restraint

Recent posts have dealt with incidents of seclusion and restraint.  Such incidents are more common than one might hope, as AP reports:

Tens of thousands of students, most of them disabled, are strapped down or physically restrained in school, and disability advocates hope that a new Education Department report detailing the practice of "seclusion and restraint" will spur federal action to end it.

The report, compiled and made public for the first time by the department's civil rights arm, shows that 70 percent of students subjected to the techniques have disabilities. There are no current federal standards on the use of the techniques in schools.

The American Association of School Administrators says they are a last resort in protecting students and faculty from physical harm and keeping some children with behavioral problems in schools who might otherwise go into residential institutions. Advocates for the disabled say the use of seclusion and restraint is too accepted in schools and has led to abuse. They want Congress or the department to help curtail the practice.

The report is about civil rights data in general, not just seclusion and restraint.  But here is the relevant page (click to enlarge):

Insurance Legislation in West Virginia and Louisiana

The State Journal reports that the West Virginia Legislature has passed a cleanup to its autism insurance mandate:

It was never a sure thing, but a bill to provide insurance coverage for applied behavioral therapy for autism spectrum disorders will be sent to Gov. Earl Ray Tomblin.

After a few questions in the House of Delegates March 10, the final day of the regular legislative session, members concurred with the amendments the Senate made to the bill.

House Bill 2693 passed during last year's legislative session to provide insurance coverage for children with the disorder. However that bill left a gap in coverage.

A bill introduced during this year's regular session, House Bill 4260, aimed to close that gap. It quickly and unanimously passed the House of Delegates, but stalled in the Senate.

A Thursday  release from Autism Speaks:

Autism Speaks, the world’s largest autism science and advocacy organization, today endorsed HB.771, which would amend Louisiana’s 2008 autism insurance reform law by raising the age cap to 21 and eliminating the $144,000 cap on lifetime benefits. Families paying thousands of dollars a year in insurance premiums would be able to continue coverage for the screening, diagnosis, testing and treatment of autism spectrum disorder (ASD) for individuals aged 16 through 20 if the legislation is enacted.

Sponsored in the Louisiana House of Representatives by Rep. Franklin Foil (R-Baton Rouge), the bill would eliminate any ceiling on lifetime benefits. Under current law, coverage ends once lifetime claims reach $144,000. In addition, the bill would eliminate the current requirement that treatments be supervised by a physician or psychologist.

Super PACs, Autism, and Massachusetts

The Boston Herald reports on an unusual agreement in Massachusetts:

Scott Brown wrote a $1,000 check to the Autism Consortium after a super PAC launched an ad touting his candidacy, fulfilling his end of the deal he made with U.S. Senate rival Elizabeth Warren to keep big money political action committees out of their campaign.

“I could not be more pleased that Professor Warren has chosen the Autism Consortium,” Brown stated in a press release. “Over the years, I have advocated at both the state and federal level for more funding for autism research and support for children and families impacted by this disease.”

Warren and Brown agreed to ban the use of PAC ads in their campaigns and to donate 50 percent of any such ad’s cost, to the charity of their rival’s choosing. Earlier this week, a super PAC that supports Mitt Romney posted ads for Brown on Google. Brown’s campaign said they asked the group to remove the ads and offered to make a donation. Warren chose the autism advocacy group yesterday.

Insurance Legislation in New Hampshire and West Virginia

In New Hampshire, the Union-Leader reports:

Mothers with babies packed a State House hearing room on Thursday to oppose the elimination of a mandate that insurers cover midwife services.

They were joined by the parents of autistic children and advocates for the hearing impaired at a Senate hearing on House Bill 309.

The bill, approved by the House in January, would make insurance coverage for midwife services optional, and it would place limits on bariatric surgery, hearing aids and early intervention services for children with autism.

Supporters of the bill said eliminating insurance mandates would help reduce the cost of health insurance in the state....
A representative of the state Insurance Department estimated that all of the state’s mandates together make up less than 5 percent of premium costs, and that of the mandates being considering for elimination, hearing aids impose the greatest cost, at about 1.6 percent of premiums.

The bill targets mandates enacted over the last four years. The midwife services is the only mandate that would be eliminated outright. Parts of the other mandates would remain, but there would be limits on coverage.

In the case of early intervention services for children with autism, the benefits would be “subject to utilization review” in line with insurance department rules.

In West Virginia, The State Journal reports: 

The Senate Finance Committee, after some debate, moved a bill to the full Senate to provide insurance coverage for children with the disorder.

House Bill 2693 passed during last year's legislative session to provide insurance coverage for children with the disorder. However that bill left a gap in coverage.

A bill introduced during this year's regular session, House Bill 4260, aimed to close that gap. It quickly and unanimously passed the House of Delegates, but stalled in the Senate.

.... 

Jill Scarboro McLaury, a certified behavior analyst, was moved to tears while speaking to the committee.

"I certainly understand how there is a miscommunication about what the intent was last year if you weren't here for those final meetings," she said. "I don't understand how they can refute their own language that clearly says the caps were for ABA."

McLaury pointed to data from other states, including Missouri, with a population about four times the size of West Virginia, reporting that insurance costs increased about one-tenth of 1 percent.

"Assumptions used by states that have independent fiscal consultants are between 10 and 15 pages," she said. "If you look at PEIA and CHIP's notes, you have about a paragraph of their substantiating, I'm sorry, lack of substantiating evidence."

McLaury said claims data from five states show that increases in premiums range about 15 cents to 31 cents per member per month.

Action in the Michigan Senate

MLive reports:

Lawmakers said a package of bills requiring autism diagnosis and treatment coverage shouldn't be considered a mandate on insurers, but a “moral public responsibility.”

A series of bipartisan bills sailed through the state Senate’s Health Policy Committee on Thursday with support from both sides of the aisle.
But Democrats and Lt. Gov. Brian Calley – a strong advocate of the package – said the bills are only a first step, and that coverage should someday be extended to other forms of brain disorders.

“This was a time when both parties could rise above the rhetoric and do the right thing for Michigan’s kids,” Calley said after the committee vote. “It’s a good day, and a good first step.”

None of the senators voted against any of the bills, thought Rick Jones, R-Grand Ledge, passed on voting for two because he disagreed with some language.

The bills -- SB 414, 415 and 981 -- would require insurers to cover an autism diagnosis and treatment. They would also direct the state Licensing and Regulatory Affairs Department to create an autism coverage incentive program through which insurance carriers and third-party administrators could seek reimbursement for paid claims.

The bills, sponsored by Sens. Tupac Hunter, D-Detroit, Mike Green, R-Mayville, and Majority Leader Randy Richardville, R-Monroe, are estimated to cost about $15 million a year at first, and supporters said 29 states have similar laws.
The two days of hearings included testimony from high-profile supporters, including Richardville and Calley, who has a daughter with the disorder.

Insurance Action in Kansas and Alabama

Autism Speaks reports:

Kansas Advocates -- Autism insurance reform is on the move! The House Insurance Committee has scheduled the first hearing for MONDAY, MARCH 12 at 3:30 pm on HB 2764 which would expand our 2010 law to cover many more families. The existing law covers only state employees. HB.2764 would extend the same coverage to all state-regulated group plans for individuals with autism through age 18. That includes coverage for the screening, diagnosis, and treatment of autism spectrum disorder (ASD) up to $36,000 a year through age 6, and then $27,000 a year through age 18. It's important that you let your House Representative know you want this bill. If they serve on the House Insurance Committee, you will ask them to vote it out of committee. If they do not serve on the committee, you will ask them to support the bill and urge their colleagues on the Insurance Committee to approve it.

Also from Autism Speaks:

March 7 UpdateSB.283 Voted Out of Senate Committee, Floor Vote Next
MONTGOMERY, AL -- The Senate Health Committee today approved SB.283, the aurtism insurance reform bill, clearing the way for a floor vote before the full Senate.Autism Speaks Endorses Alabama Autism Insurance Reform Bills
SB283/HB345 Would Assure Access to Health Care for Children with Autism by Requiring Coverage of Diagnosis and Treatment

NEW YORK, NY (February 15, 2012) – Autism Speaks, the nation’s largest autism advocacy organization, today announced its support for SB 283 and HB 345, which would bar large group health insurance plans in Alabama from refusing to cover the diagnosis and treatment of treatment of autism.

Families paying thousands of dollars a year in insurance premiums would gain coverage for the screening, diagnosis, and treatment of autism spectrum disorder (ASD). The Senate bill would provide coverage for children through age 9; the House bill would provide coverage through age 18.

Sponsored in the Alabama Senate by Senator Cam Ward and in the House by Rep. Mac McCutcheon, the bills include coverage of behavioral health treatments, such as Applied Behavior Analysis (ABA), an evidence-based autism therapy, for up to $50,000 a year. The bill woulds apply to large group health insurance plans regulated by the state of Alabama.

Senator and Mrs. Ward speak on SB 283: