Robison on Lanza

Investigators found a copy of Just Look Me in the Eye in Adam Lanza's house. WSHM in Springfield, Massachusetts, interviews the author, John Robison, who has Asperger's.

"It is important to remember that just because somebody like that might have had Asperger's, that does not mean that he does not have other problems," Robison stated. "Asperger's does not protect you from any number of other potentially serious disorders."

At its root, Robison said autism is a communication disorder. For someone like Lanza, it could make it difficult to understand what people are trying say.

"It can make you lonely," said Robison. "It can make you depressed. It can make you anxious. It can make it hard for you to learn. There is nothing in the profile of autism, in any of its forms, that predicts violence towards other people."

That is why Robison, who just last year was appointed to the Interagency Autism Coordinating Committee by the secretary of health and human services, believes gun control is a tough issue. He said for every child diagnosed with autism, there are two adults who have the disorder but do not know it.

"Some of those adults that are not diagnosed are policemen, security guards, some are all manner of other emergency responders," said Robison. "Some are soldiers in the military. Should we take guns away from them? Of course not. Most of those people are valuable members of society."

Robison said something that gets overlooked in all of the Sandy Hook reporting is that two of the 20 children who were killed were also in the autism spectrum.

CBS 3 Springfield - WSHM

Autism and Privacy in North Dakota

Good data are necessary for good policy, but data collection often involves privacy concerns. In North Dakota, The Jamestown Sun reports:

A bill under consideration in the North Dakota Legislature is prompting concern among some parents of children with autistic spectrum disorders. The bill, Senate Bill 2193, creates a database of information about autistic people and establishes the position of a state autism coordinator. 

“I have minor concerns about it all but what is extremely upsetting is the mandated database,” said Amanda Lausch, mother of 5-year-old Ariella who has an autism spectrum disorder. “Whoever diagnoses them is required to report it to the state. It requires a physical exam and the state can collect any other information it deems appropriate.”
...

The current wording of the bill as passed by the Senate, includes a clause that requires the department of health to keep confidential all records of the database that could be used to identify an individual. The same clause exempts transfers of information to other state agencies from the confidentiality requirement. It does require the receiving state agencies to treat the information as confidential. 

[State Senator Joan] Heckaman said the privacy of the medical records is also covered by federal law. 

The Health Insurance Portability and Accountability Act, more commonly known as HIPAA, requires all medical information to be treated as confidential, she said.

A Vote in the New York Assembly

AP reports on a vote in the New York State Assembly:

The Assembly's march to approve the state budget was interrupted briefly on Thursday by an impassioned rank-and-file effort to reverse cuts in programs for the developmentally disabled.
"Whoever negotiated these cuts has never struggled with the pain of watching a child with disabilities," said Assemblyman Bill Nojay, a Monroe County Republican.

"I want to know why the state of New York is making is making an attack on people with disabilities," said Assemblyman Tom Abinanti, a Westchester County Democrat whose son is autistic.

Assembly members argued the programs that feed and care for the developmentally disabled youths and adults in group homes already often face short staffing that hurts care. They said money should be taken from elsewhere in the $141.2 billion budget. They cited the $420 million tax credit to subsidize movie and TV productions and $54 million that will be spent to help renovate the stadium used by the NFL's Buffalo Bills.

"Where are our values?" said Assemblyman Harvey Weisenberg, a Nassau County Democrat whose son is disabled and needs intensive care. "We cannot let dollars be more important than people!"

The effort by Republicans and some Democrats in the Assembly majority to fully restore a $90 million cut in aid failed. But it was followed by a rare standing ovation, and hugs by colleagues for Weisenberg, who was in tears.

h/t:  HP

Autism and the Vaccination Schedule

Bloomberg reports:

Autism risk isn’t increased by the use of recommended childhood vaccines, U.S. health officials found in a study addressing parent concerns that too many immunizations may cause the disorder.

An analysis of 1,000 toddlers showed no differences in exposures to vaccines between autistic and normally-developing children, according to findings published in the Journal of Pediatrics by researchers at the Centers for Disease Control and Prevention in Atlanta. The CDC recommends 10 immunizations before age 2, and some require more than one shot.

Multiple studies have shown measles, mumps and rubella vaccines don’t individually cause autism. A third of parents surveyed in a previous report were concerned too many vaccines given before age 2, or on the same visit, may be a contributor. About 1 in 10 toddler parents refuse or delay vaccinations because they believe the schedule to be unsafe, the study said.

“This is a very important and reassuring study,” said Geri Dawson, the chief scientific officer of Autism Speaks, an advocacy organization, in a telephone interview. She wasn’t involved in the study. “It’s going to be very helpful in addressing some of the concerns parents have had about vaccination schedules.”

The research compared data taken from managed-care groups for 256 children with autism and 752 without. It found no differences in the amount of antigens the kids were exposed to in the first 2 years of life. It also found no support for the idea that too many vaccines on one doctor’s visit might increase the risk of autism.

Massachusetts Autism Commission

In Springfield, WWLP reports on the Massachusetts Autism Commission:

Report: 75,000 people in MA have autism

Major recommendations include:

1. Expand eligibility criteria for the Department of Developmental Services so that individuals with autism who have IQs over 70 and have substantial functional limitations have access to services.
2. Assure that those with autism and a co-occurring mental health condition have equal access to and appropriate services from the Department of Mental Health.
3. Expand intensive services in the home and community for individuals with autism through the
Children’s Autism Medicaid Waiver, the Adult Medicaid Waivers, and the Department of Elementary and Secondary Education/Department of Developmental Services Residential Placement Prevention Program.
4. Expand insurance coverage for autism treatments
5. Increase and fortify supports and resources that make it possible to maintain the family unit and assist individuals with autism to live in the community.
6. Determine the number of people with autism in Massachusetts and their support needs by
implementing a plan for consistent statewide data collection.
7. Improve access to autism screening, diagnosis, and Autism Specialty Services through Early Intervention for children diagnosed with autism and those considered at high risk for autism.
8. Increase employment opportunities for individuals with autism by providing a range of job training, job development, and employment opportunities.
9. Increase capacity to provide educational supports and services necessary to meet the needs of all students with autism.
10. Increase availability of augmentative and alternative communication methods, devices and
services for individuals with autism.
11. Increase the range of housing options for individuals with autism.
12. Improve the delivery of healthcare services for individuals with autism. 13. Assure that the Autism Commission’s Recommendations are implemented and outcomes are

monitored for effectiveness.

Nevada Mandate Expansion Bill

LifeHealthPro reports on legislation in Nevada:

Assemblyman James Ohrenschall, D-Las Vegas, and two colleagues have introduced Assembly Bill 369, a bill that could require state-regulated health plans to cover an unlimited amount of medically necessary applied behavioral analysis (ABA) therapy.

Today, Nevada requires carriers to cover ABA therapy -- an intensive form of therapy that can cost as much as $100,000 per year in some areas -- but lets the carriers limit benefits to $36,000 per year.

Under A.B. 369, the minimum benefit cap for ABA therapy for autism would be enough coverage to pay for "30 hours of treatment per week unless a treatment provides for additional hours of treatment."

...
The board of the Silver State Health Insurance Exchange -- Nevada's Patient Protection and Affordable Care Act (PPACA) health insurance exchange -- has included an analysis of the bill in a health insurance legislative update packet.

Maintenance of Effort in the Continuing Resolution

Education Week reports:

Under maintenance of effort—or MOE, in wonky Washingtonspeak—states can't cut their own education spending below whatever amount they spent the previous year and still tap federal dollars for special education under the Individuals with Disabilities Education Act, unless they get special permission from the department.

Keeping up special education spending is usually not a problem for states, but it became an issue during the recent budget recession.

The most prominent example by far? South Carolina, which has actually sued the Education Department in connection with this issue. The department withheld $36 million in special education funding from the Palmetto State last October. And that reduction was slated to stay in place permanently, until Congress and the administration intervened.

The Obama administration and lawmakers on Capitol Hill, including U.S. Sen. Tom Harkin, D-Iowa, the chairman of the panel that oversees education spending, added a provision to the recent spending legislation clarifying that while states that are out of compliance with the law will still see their funding reduced, that cut won't be in place in permanently. Instead, the reduction would just be for the year (or years) that the state was out of compliance and didn't get a waiver. Once the problem had been fixed, the state could go back to its regular spending levels.

The new provision goes on to explain that the reduced funding would still go to IDEA, just not to the offending state. Any money that's taken away from a state that doesn't keep up its end of the spending bargain would be split among states that do, as a kind of bonus. But states that get the extra funds would have to understand that this would be a one-time thing—they wouldn't be able to count on the extra funding forever.

Autism: Causes, Correlates, and Confusion

Last year, Brandy Crainer wrote at The Examiner:

In recent news several possible factors have been pointed to as causes of autism: maternal obesity, smoking during pregnancy, lead, PCBs, paternal age, and maternal age. Despite the rush to find a definite cause for autism spectrum disorders, the answers seem numerous and it becomes difficult to evaluate what studies are worth paying attention to and which are just bad science. Parents looking at the headlines may feel fingers are being pointed at them while expectant mothers may worry everything they do will cause autism in the future.

The list also includes auto exhaust, pesticides, plastics, and gut bugs.  (Also see a list by Emily Willingham.)

Now add a couple of other risk factors:  maternal experience with childhood abuse and the age at which grandfathers had their children.

The problem here is not necessarily the quality of the research, but the risk of media overload. Under the barrage of potential causes of autism, people may end up believing everything or believing nothing.

If people obsess about remote, hypothetical risks, they may overlook real and avoidable risks.  Alternatively, after a point, they may just tune out the entire subject.

Pentagon Autism Research

Previous posts have noted an oddity:  a good deal of autism research money comes from the Pentagon budget.  Autism Speaks provides an update:

A government funding bill approved by Congress includes $6 million for the Department of Defense Autism Research Program.

The new funding is part of the Congressionally Directed Medical Research Programs which has awarded 85 grants valued at $41.4 million for autism research since the program was created in 2007 through efforts spearheaded by Autism Speaks. The new funding was included in a

Continuing Resolution approved by Congress to fund government operations through the end of the current federal budget in September. The bill awaits President Obama's signature.

Congress approved the additional funding as the Centers for Disease Control and Prevention (CDC) issued the results of a national survey which indicated the actual rate of prevalence in the United States could be in 1 in 50 children. The new data do not replace the CDC's official 1 in 88 prevalence rate, but indicates prevalence is on the rise.

The Department of Defense funding is in addition to the research funding authorized under the 2011 Combating Autism Reauthorization Act for the National Institutes of Health. Any impact of sequestration on the appropriation is not yet clear.

The CDC Study and Prevalence

At the Bergen Record, Mary Jo Layton writes of the new CDC finding of a 1-in-50 prevalence of autism:

When New Jersey reported one of the nation’s highest rates of autism last year — doubling in six years to one in 49 children — researchers described it as “beyond an emergency.”

But a federal study released this week indicated that the high rate appears to be the norm nationally. Autism spectrum disorder now affects one in every 50 children, well above the one in 88 previously reported by the Centers for Disease Control and Prevention.

“The good news is that the increase in autism isn’t special to New Jersey,” said Walter Zahorodny, an autism researcher at the University of Medicine and Dentistry of New Jersey. “The bad news is that it’s a significant increase and it’s registering everywhere.”
...
“The feeling all along wasn’t that New Jersey has more cases of autism — New Jersey was just more rigorous in ascertaining the incidence,” said Dr. Joseph Holahan, medical director of the child development center at St. Joseph’s Children’s Hospital in Paterson. “It’s still one of the most common serious developmental disorders we see.”
...
Some experts have questioned the methodology used in the latest federal report — a national phone survey of 95,000 parents from 2011 and 2012, compared with more rigorous population-based research the CDC relied on when it estimated the 1-in-88 rate. Fewer than a quarter of the parents contacted agreed to answer questions in the general health survey, which included the questions about autism.

The survey focused on children ages 6 to 17, and the CDC attributed much of the increase to reported cases in adolescents ages 14-17. These children were more likely to have milder symptoms and therefore were not diagnosed until later, CDC experts concluded.

“This is a good study, done with a large U.S. sample, and it correctly reflects the magnitude of increase in autism spectrum disorder over the past years,” Zahorodny said.

But he urged caution. As a telephone survey, he said, “it may be biased from the perspective of who responds.”

News Article Slants Against ABA

For some reason, Minnesota newspapers seem to have a bias against ABA.  In an article titled
"Minnesota Senate Panel OKs Disputed Autism Treatment Coverage Mandate," The St. Paul Pioneer Press reports:

A state Senate committee voted Friday, March 22, to approve a bill that would mandate insurance coverage for an expensive and controversial form of autism therapy.

The bill, sponsored by Sen. Chris Eaton, DFL-Brooklyn Center, next goes to a finance committee, where senators will more directly consider the cost of the mandate.

The treatment is known as early intensive behavioral intervention (EIBI). It can include 40 hours per week of therapy at an annual cost of about $57,000.

One version is known as "Lovaas therapy," which is named for a California doctor [sic: Lovaas was a psychologist, not a physician.] who developed the treatment approach to autism spectrum disorder in the 1980s [actually, he started in the 1960s]

During a hearing Friday in the Senate Health, Human Services and Housing Committee, supporters credited the rigorous therapy with helping children recover from autism.

"This crucial insurance coverage will provide individuals with life-transforming therapies that enable individuals to reach their full potential, and ultimately will enable many to live independent lives," said Kara Redding of Maple Grove, whose son Jack has been helped by treatment.

But critics argue that scientific evidence showing the superiority of the treatment is lacking. Insurers say they cover other effective autism therapies.

Medicaid Waiver in Maryland

Autism Speaks reports:

More than half of all children with autism are insured by Medicaid. Some states insure children with autism through Home and Community-Based Services Waivers -- special programs that waive certain Medicaid rules so that people with great needs can be served in their communities rather than in institutions.

Maryland has a Medicaid waiver for children with autism. The Maryland waiver provides respite care, environmental accessibility adaptations, family training, and other unique services, in addition to more common Medicaid services such as physician and hospital care.

The number of children who can be served by the Maryland autism waiver is capped at 900. Almost 4,000 children are on a waiting list for services. The Maryland legislature is now considering whether to increase the number of waiver slots so that more children can be served. The parents of three children on the waiting list report on their visit to the state capital in Annapolis to testify before the legislature for additional slots.

From one of the parents:

•  I noted that Rory has been on the autism waiver wait list for five years, and she is only #1,633 out of 3,900 names. There was an audible gasp in the committee room. And that gasp startled me. What’s more shocking? That Rory is only at number 1,633 on the list after all these years? Or, that I am surprised that this surprises other people?

IACC Endorses National Standard

Disability Scoop reports:

A federal advisory panel is calling on the Obama administration to establish a minimum standard for autism insurance coverage.

The Interagency Autism Coordinating Committee, or IACC, voted unanimously on Tuesday to send a letter to U.S. Secretary of Health and Human Services Kathleen Sebelius highlighting the vast differences emerging as states determine what type of treatments insurance providers will be required to cover under the new health care reform law.

At present, the committee indicated that about half of states are expected to include treatment of applied behavioral analysis, or ABA therapy, and other autism-specific behavioral interventions in their “essential health benefits” — 10 categories of treatment that most plans will be required to provide starting next year. Other states may mandate that little to no autism treatments are covered by health insurers, the panel said.

The draft letter is here. 

Organ Transplant Discrimination

Previous posts have discussed discrimination in organ transplants.  Disability Scoop reports:

People with developmental disabilities who are in need of life-saving organ transplants are facing widespread discrimination from health care providers, a new report indicates.

In what’s believed to be the first comprehensive look at the experiences of those with intellectual and developmental disabilities seeking transplants, advocates found that individuals are routinely turned down for the procedures due to their special needs.

The report released this week by the Autistic Self Advocacy Network indicates that doctors often weigh the presence of a developmental disability when making decisions about transplant eligibility, but to what degree varies largely depending on the type of organ needed. Evidence suggests that many heart transplant centers consider a cognitive impairment reason enough to make the procedure inadvisable, while disabilities are generally less of a driving factor in determinations related to liver and kidney transplants, for example.

Federal law prohibits health care providers from discriminating on the basis of a person’s disability. Nonetheless, the report finds that given the broad discretion that doctors have in making medical judgements “decision-making done on the basis of disability can often be officially attributed to non-discriminatory motives.”

Cantor on Autism

From House Majority Leader Eric Cantor (R-VA):

Today's news that 1 in 50 school kids has autism is sobering. These children and their hardworking parents are overcoming challenges on a daily basis, and in Congress we must prioritize policies that will assist them.

For example, this year House Republicans will renew our focus on school choice, which allows parents with autistic children to find the best school that suits their needs. This is critically important. We will also address prioritizing medical research funding, so that we can continue to study the cause and treatment of disorders such as autism.

Working with parents and organizations like Autism Society and Autism Speaks, I know we can take positive steps forward. On April 2, World Autism Day, we will have an opportunity to reflect on these issues, and the children they affect.

One in Fifty

Many posts have discussed the prevalence and incidence of autism.  NBC reports new data:

Two percent of U.S. schoolkids – or about a million children – have been diagnosed with some sort of autism, according to the latest government report released on Wednesday -- or at least their parents say they have. It’s a large increase since the last report but experts stress it doesn’t necessarily mean more children are developing autism.

...

Tanya Paparella of the University of California Los Angeles Center for Autism Research and Treatment says she thinks it very possible that kids have been going undiagnosed.

“A child who is verbal, who has good language, who is highly intelligent – those are children where I think parents and even teachers and the layperson might not necessarily have thought that was a child with autism spectrum disorder,” says Paparella, who was not involved in the study.

“In the past, people really thought children on the autism spectrum had significant learning difficulties and we know now that is not necessarily the case. We know there are children who may be highly intelligent and do very well in areas of academics.” Such kids may have been seen merely as quirky, Paparella says.

The abstract:

Objectives—This report presents data on the prevalence of diagnosed autism spectrum disorder (ASD) as reported by parents of school-aged children (ages 6–17 years) in 2011–2012. Prevalence changes from 2007 to 2011–2012 were evaluated using cohort analyses that examine the consistency in the 2007 and 2011–2012 estimates for children whose diagnoses could have been reported in both surveys (i.e., those born in 1994–2005 and diagnosed in or before 2007).

Data sources—Data were drawn from the 2007 and 2011–2012 National Survey of Children’s Health (NSCH), which are independent nationally representative telephone surveys of households with children. The surveys were conducted by the Centers for Disease Control and Prevention’s National Center for Health Statistics with funding and direction from the Health Resources and Services Administration’s Maternal and Child Health Bureau.
Results—The prevalence of parent-reported ASD among children aged 6–17 was 2.00% in 2011–2012, a significant increase from 2007 (1.16%). The magnitude of the increase was greatest for boys and for adolescents aged 14–17.

Cohort analyses revealed consistent estimates of both the prevalence of parentreported ASD and autism severity ratings over time. Children who were first diagnosed in or after 2008 accounted for much of the observed prevalence increase among school-aged children (those aged 6–17). School-aged children diagnosed in or after 2008 were more likely to have milder ASD and less likely to have severe ASD than those diagnosed in or before 2007.

Conclusions—The results of the cohort analyses increase confidence that differential survey measurement error over time was not a major contributor to observed changes in the prevalence of parent-reported ASD. Rather, much of the prevalence increase from 2007 to 2011–2012 for school-aged children was the result of diagnoses of children with previously unrecognized ASD.

A Case of Abuse in California

Cases of abuse are all too common.  The latest comes from California.  Serene Branson reports at KCBS in Los Angeles about Kathy Coleman, who arranged with Jay Nolan Community Services to find a Northridge home for her 31-year-old nonverbal ASD son.

Coleman, however, grew concerned about her son’s living situation when she started to notice bruises on his body.

The mother said she immediately took her concerns to management.

“When I asked them (about the bruises), (they said), ‘We don’t know.’ Then the next week when I came, (the bruises) got worse. Every week (it) got worse. Then my son showed me signs that he’s afraid of the staff,” she said.

Coleman decided to take matters into her own hands and installed hidden cameras inside Cameron’s home.

After a few days, she was horrified by what she saw the workers do to her son.

The recordings showed a caretaker kick Cameron in the face on the toilet, kick him on the floor, hit him with a towel, and then spit on him before walking away.

Bill in New Mexico

Autism Speaks reports:

The New Mexico Senate gave final legislative approval to a bill that would expand the state's 2009 autism insurance reform law to cover state employees. It was approved 34-0 and sent to Gov. Susana Martinez.

Sponsored by Bernalillo legislators, Rep. James Smith (R) and Senator Bill O'Neill (D), the bill (HB.22) was amended in its final stages at the request of the Martinez administration to delay implementation until January 1, 2015. Martinez signaled her intent to sign the bill with the amendment.

The current law requires coverage for the diagnosis and treatment of autism through age 19, including up to $36,00 a year for applied behavior analysis. In addition to New Mexico, legislatures in California, Maine, Kansas and Texas are considering bills to expand coverage under existing autism insurance reform laws.

The New Mexico bill is the first to complete legislative action and be sent to the governor.

Michigan Plan

A release from the Michigan Department of Community Health:

Today, Mar. 18, the Michigan Department of Community Health (MDCH) and the Michigan Autism Council released the Michigan Autism Spectrum Disorders (ASD) State Plan. This plan represents another major step to addressing the many needs of the 16,000 students with ASD in our public school system and the 50,000 individuals and their families living with ASD in our state.

"Today marks another significant day for Michigan and our efforts to help families and individuals with autism," said Lieutenant Governor Brian Calley. "It was an honor to sign the autism insurance legislation last year and I'm glad to see that our efforts have not stopped there. We have a great opportunity in front of us with this plan. I'm eager to see the progress Michigan will continue to make."
...
The key focus areas identified in the Michigan ASD State Plan are:

• Infrastructure: System, Service, and Resource Coordination
• Family Engagement and Involvement
• Early Identification and Intervention Services
• Educational Supports and Services
• Adult Supports and Services
• Physical, Mental, and Behavioral Health Care
• Training and Professional Development

The development of the plan included identifying current best practices in supporting individuals with ASD of all ages, reviewing current practice in Michigan across key priority areas, identifying gaps between best practice and current practice in Michigan, and making recommendations for improving services and outcomes. The ultimate goal of this plan is to guide future planning, decision making, and resource allocation to meet the needs of individuals and families living with ASD.

For more information about Michigan's efforts to address autism and to view the Michigan ASD State Plan, visit www.michigan.gov/autism.

Licensing in Pennsylvania

The Pittsburgh Tribune-Review reports:

Some autistic children and their families will suffer because of a state law that requires behavioral specialists to apply for a license in order for insurance to cover their treatment, a local support group said.

“Kids with autism lack the understanding to deal with a disruption or delay of services,” said Luciana Randall, executive director of ABOARD'S Autism Connection of PA. “Any progress they have made is going to be interrupted, and in autism, a transition like this means the vast majority will regress behaviorally and emotionally.”

Randall estimates there are 14,000 autistic children statewide served by specialists. The Pennsylvania Medicaid Policy Center estimates 21,000 children in the state are autistic.
“The intent was to raise the standards for people working with children with the autism spectrum disorder,” said Pennsylvania Department of Public Welfare spokeswoman Carey Miller.

Of the 2,500 to 3,000 behavior specialists in Pennsylvania, Miller added, only 540 have applied for a license. Local agencies said some of their other specialists will qualify for the license but are still gathering the paperwork to apply for one.

The deadline is May 26. Miller couldn't say whether the state would be able or willing to extend the deadline, which the state set last summer.

Maine Bill

From Autism Speaks:

Autism Speaks has endorsed a new bill, SP.127, which would amend Maine's 2010 autism insurance reform law by raising the age of eligibilty for benefits from 5 to 21. The measure is sponsored by Sen. Colleen Lachowicz (D-Kennebec).

The current Maine law took effect in 2011 and requires state-regulated health plans to cover the diagnosis and treatment of autism through age 5. The coverage includes speech, occupational and physical therapy, as well as behavioral health treatment, such as ABA, up to $36,000 per year.

Maine was the 16th of the current 32 states to enact autism insurance reform and is one of five states seeking to expand coverage this year.

Senator Lachowicz testified for the bill:

Often families will get secondary MaineCare/Medicaid to cover ABA services, because they arethe only payor in the state that pays for this program past age 5. Then they can get the caretheir child needs from a qualified professional. An educated consumer wants to make sure theirchild receives treatment that is evidence-based from a well trained, qualified provider. In theend, the taxpayers wind up paying for something that parents want to provide for their familiesthemselves when they buy insurance. The State of Maine can save money on Medicaid bypassing this legislation

...
In 2010, the 124th Legislature passed a bill that said that insurance companies have to pay for autism services for children covered under health insurance plans up to the age of 5. The original bill specified the age of 21 but was amended in committee. This bill proposes again that insurance companies pay for services up until the age of 21. I looked at the previous legislation.One of the arguments was that once children are in school, they can access services for autism in school.

Well, I've worked in school-based behavioral health for a long time. I have to tell you that sometimes that isn't enough. If a child is having difficulty at home or in the community, the parent may need to access that professional someplace other than the school. The training level of the providers also varies greatly across school districts. School-based providers are not required to be trained in Applied Behavior Analysis, nor should they be; it is a specialty.Clinicians pick up generalist skills in working with a variety of conditions over time, but nothing replaces an evidence-based practice like ABA.

Red Tape

Back in 2004, The New York Times reported: "With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance."  An often-overlooked challenge  is the sheer amount of red tape associated with obtaining and maintaining services. (Obviously, this problem affects independent adults on the spectrum as well as parents and other caregivers.)

In Murfreesboro, Tennessee, the Daily News Journal reports on Felicia Burk, who has three children on the spectrum.

“Trying to obtain services for a special-needs child is a never-ending process. ... Taking care of the children is much simpler than taking care of the paperwork,” says Burk, placing her hand on a stack of papers to keep it from teetering off the edge of the desk. “It’s very frustrating.”

The autism diagnosis alone can be overwhelming, says Holly Thornhill of Murfreesboro, Autism Speaks advocate and mother to Hunter, who has autism.

Knowing where to start can seem like an insurmountable task, she notes.

“The first thing you have to do is accept it. Being in denial will hinder a child. Swallow your pride and say, ‘We gotta deal with this,’” says Thornhill.

Thornhill suggests downloading the Autism Speaks 100 day kit. “It gives you peace of mind and tells you what step you need to take next,” Thornhill says. “You also need to get an IEP (Individual Education Plan) set up and you need to get involved with therapists to find whatever therapists your child is needing and get that therapy set up,” she adds.

The young mother started early. As a nursing student, she knew her son had developmental delays early on. So she contacted Tennessee Early Intervention Services (TEIS). “He was already getting therapy, although we didn’t have a diagnosis,” she says.

Denise White of Smyrna, also a nurse, pushed to get both her boys help early. Her 13-year-old son, Levi, and 9-year-old son, James, both have autism spectrum disorders. James struggles mainly with social issues while Levi is nonverbal. Both boys are on TennCare, the state’s Medicaid system, because they receive Supplemental Security Income. The boys receive medical and dental coverage and are also cover under their mother’s health insurance.

The only way White knew to apply for SSI at all is because the director of the special-needs daycare Levi attended suggested she do so.

“I showed proof of their disability back when they were 2. I had to show documentation from doctors, from their teachers and from other people who knew them, just about every single piece of paper I had on them,” says White, a single mother of three, including teenage Marian, who is not on the spectrum. “It was mainly to get them services they need, not just now, but when they are adults.”

Football and the Dilemma of Difference

In 1990, legal scholar Martha Minow wrote of the "dilemma of difference."

When does treating people differently emphasize their differences and stigmatize or hinder them on that basis? and when does treating people the same become insensitive to their difference and likely to stigmatize or hinder them on that basis?

The Newark Star-Ledger reports on a recent case of  this dilemma:

Anthony Starego, the autistic placekicker who kicked a game winner for Brick High last fall and became a national story, was denied another year of eligibility by the New Jersey State Interscholastic Athletic Association’s eligibility appeals committee, his father said Wednesday.

Starego was ineligible under NJSIAA rules that prohibit athletes from participating for more than eight consecutive semesters and after they turn 19. But his father Ray Starego had appealed because playing football had not only helped his son’s development, but could serve as inspiration to others with autism.

“They said, regardless of his story, they had to treat him like he was any other kid,” Starego said. “So in other words, his development meant absolutely nothing. And I think that’s probably the scariest thing at all, because they ignore all of that and gave that no weight. And that’s the whole point.”

NJSIAA executive director Steve Timko, in a statement Wednesday night, said that the committee grappled with Anthony Starego's story but decided that it would be unfair to allow him an opportunity to participate in sports that other students, disabled or otherwise, could not receive.

"This young man brings a high degree of skill to the game," the statement reads. "He is a physically mature young man with college-level kicking skills. He is a strong competitor and a difference-maker. His participation gives the school an advantage against other teams.
"In the end, the committee determined that, among other things, the student did not qualify for a waiver because he has already played four years, he's a difference-maker on the field, and would displace another student on the team."

Disability and Employment

A number of posts have discussed employment of people with ASD and other disabilities. The Census Bureau reports:

Individuals with disabilities were less likely to be employed than individuals without disabilities, and those who were employed typically held jobs with lower earnings and also earned less than their colleagues with no disability, according to the U.S. Census Bureau's American Community Survey. Based on the new Disability Employment Tabulation, the statistics show that between 2008 and 2010, individuals without disabilities were about three times more likely to be employed than individuals with disabilities. Overall, individuals with disabilities accounted for 9.4 million, or 6.0 percent, of the 155.9 million civilian labor force.

More than half of all workers with a disability were concentrated in four general occupation groups: service workers (except protective services) with 18.2 percent, followed by administrative support (15.1 percent), sales workers (10.4 percent) and management, business and finance (8.9 percent).

Among specific occupations, janitors and building cleaners had the highest number of employees with a disability at 315,000, or 11.8 percent of all workers in that field, followed by drivers/sales workers and truck drivers with 263,000 people, cashiers with 256,000 and retail salespeople with 223,000.

Among occupations with 100,000 or more people, dishwashers had the highest disability rate at 14.3 percent, followed by refuse and recyclable material collectors (12.7 percent), personal care aides (11.9 percent), and janitors and building cleaners (11.8 percent). The rates for refuse and recyclable material collectors, personal care aides, and janitors and building cleaners were not statistically different from one another.

More than half of workers with disabilities (52 percent) earned less than $25,000 in the previous year, compared with just 38 percent of workers with no disabilities. This translates into an earnings gap where individuals with disabilities earn about 75 percent of what workers without disabilities earn. [emphasis added]

...The Disability Employment Tabulation, which has similar content to that found in the recently released Equal Employment Opportunity Tabulation, now presents in-depth labor force characteristics of individuals with disabilities, with more details on employment status, occupation, education and earnings.

ABLE Act Support

A release from Rep. Ander Crenshaw:

Congressman Ander Crenshaw (R-FL), Senator Robert Casey, Jr., bill co-sponsors, and disability advocates highlighted growing support for the Achieving a Better Life Experience Act (ABLE Act - HR 647/S 313) at a Capitol Hill press conference on Thursday, March 14. The bipartisan legislation - with over 100 House and Senate co-sponsors - aims to create an improved quality of life for individuals with disabilities through tax-free savings accounts.

House and Senate bill co-sponsors and self-advocates from the National Down Syndrome Society (NDSS) spoke at the press conference on the grounds of the United States Capitol on Thursday (3/14). They were joined by representatives from the disability advocacy community, including NDSS, Autism Speaks, and The Arc. With the Capitol Dome behind them, members of the group highlighted the road ahead for the bill and described an improved quality of life for individuals with disabilities through the legislation.

In addition to Crenshaw, Casey and other bill co-sponsors, John Anton, National Down Syndrome Society Self Advocate, spoke at the event. Anton, of Haverhill, MA, currently serves as an intern in the office of Congresswoman McMorris Rodgers.

A video in support of the legislation:

Tennessee Mandate Legislation

In Nashville, WKRN reports on Tennessee mandate legislation:

A state proposal that would require insurance companies to add more coverage for autism patients has hit a snag.

House Bill 1265 was introduced to Tennessee lawmakers this legislative session. The bill would require insurance companies to cover therapy for autistic kids and adults.

However, a vote on HB 1265 has been pushed back until next Wednesday.

The bill's sponsor, Representative Kevin Brooks (R-Cleveland) says it won't be easy to get HB 1265 passed.

Brooks said lawmakers needed time to meet with disability, business and insurance groups so at least a compromise could be reached for passage of the bill.

WKRN, Nashville News, Nashville Weather and Sports

Making Insurers Pay in California

Previous posts have discussed insurance regulation in California.  Yesterday, the state's insurance department issued a release:

Insurance Commissioner Dave Jones today announced that the Office of Administrative Law (OAL) approved the emergency regulations aimed at eliminating delays and denials of coverage for autism treatment. Commissioner Jones issued these emergency regulations to protect children diagnosed with autism and their families from the emotional, physical and financial harms caused by insurer denials or significant delays in autism treatment, which has reached crisis proportions in California.

"I am extremely pleased that the Office of Administrative Law has approved our emergency regulations," said Commissioner Jones. "These emergency regulations will ensure that insurance companies cover medically necessary treatment required by the Mental Health Parity Act and Senator Darrell Steinberg's autism treatment legislation. Autistic children and their families should now, without delay, receive the transformative treatment that will enable them to succeed in school, their families, and communities."

The California Mental Health Parity Act was intended to provide adequate private health insurance coverage and benefits for mental illnesses. The legislature found that autism is one of several severe mental conditions that are seriously disabling. Failure to provide adequate coverage in private health insurance policies significantly increases expenditures by state and local government for medical treatment, special education and other services.

Later laws, such as SB 946 (Steinberg), signed by Governor Jerry Brown in October, 2011, reconfirmed the mandate for health insurers and HMOs to provide behavioral health treatment for autism. This emergency regulation is expected to benefit thousands of California's children and families and save California taxpayers approximately $138.8 million to $197.8 million over the next year in costs that should properly be borne by insurers. These emergency regulations are the latest in a series of actions taken by Commissioner Jones to make sure autistic children can receive behavioral therapy treatment.

AP Stylebook

Many posts have discussed journalistic practice in light of the Newtown shooting. Kira Goldbenberg writes at The Columbia Journalism Review:

After Adam Lanza killed 20 children on December 14, a host of subsequent coverage of the Newtown, CT, massacre focused on whether or not he was mentally ill and, if so, how his illness may have affected his actions.

Most of the speculation centered on whether or not Lanza had autism—which is not a mental illness but often gets lumped in with them—leading to enraged pushback by advocates that (rightfully) resented the implication the developmental disorder causes violence. (A joint investigation between Frontline and the Hartford Courant reported that Lanza did have a diagnosis of Asperger’s syndrome.)

Turns out all this coverage was crafted with no official standards guiding how journalists should treat mental illness in their reporting—the Associated Press Stylebook, the main arbiter of style and usage in journalism, lacked an entry on mental illness until Thursday.

Autism figures prominently in the entry: 

Autism spectrum disorders. These include Asperger’s syndrome, a mild form of autism. Many experts consider autism a developmental disorder, not a mental illness

Insurance, Autism, and Georgia

In Atlanta, WXIA covers a hearing on Georgia mandate legislation:

 

The report includes comments by Senator Renee Unterman, a foe of the legislation.  Unterman is an insurance company employee.  See this page from her financial disclosure:

Amerigroup, in turn, belongs to WellPoint.

Two Cases of Restraint

Many posts have discussed the issue of restraint in schools and other settings.

WFLD in Chicago reports on a case of restraint in a hospital: Chicago News and Weather | FOX 32 News

KRIV in Houston reports on a case in a school: Houston weather, traffic, news | FOX 26 | MyFoxHouston

Trying to Revive the Georgia Mandate

Even though the Georgia mandate legislation appears to have stalled for the time being, autism advocates are pressing on.  The Gainesville Times reports:

The Georgia Senate Insurance and Labor Committee is scheduled to hold a hearing Monday on “Ava’s Law” that would require insurance companies and other health insurance plans to cover treatments for autism, including applied behavioral analysis.

The bill is named for Ava Bullard, an 8-year-old girl from Lyons with autism, whose mother, Anna, has advocated for expanded autism coverage.

Georgia is one of 18 states that doesn’t require insurance plans to cover autism treatments. Carpenter, other mothers and supporters are planning to show up at the state Capitol to show their support for legislation. But with just 10 days remaining in the legislative session, its chances of passing are dim.
...


Judith Ursitti, director State Government Affairs of Autism Speaks, an advocacy organization, said autism is a treatable condition and children with intensive therapy and early intervention can “lose” their autism diagnosis.

Ursitti plans on testifying before the Senate insurance committee Monday. The Special Advisory Commission on Mandated Health Insurance Benefits, created by Sen. Tim Golden, R-Valdosta, in 2011, will discuss autism legislation Tuesday. Golden, chairman of the Insurance Committee, created the commission to study the social and financial impact of legislation that mandates insurance benefits or providers. However, Ursitti said the organization has worked to pass autism legislation since 2009 and the commission has never studied the issue.

“It’s important to note that there’s nothing that says they (lawmakers) have to wait for the mandate commission to act,” she said.

There are bills in both the Senate and House, but their language is the same. “Crossover Day” in the Georgia General Assembly on Thursday is the deadline when bills stuck in committees and not voted on out of one chamber are dead for that year. Both bills remain in each chamber’s insurance committees.

Letter on Federal Employee Health Benefits

A Tuesday release from Representative Jim Moran (D-VA):

Today, lawmakers from the DC Metro area sent a letter to Director of the Office of Personnel Management John Berry asking the agency to ensure Federal Employee Health Benefits Program (FEHBP) insurance providers cover applied behavior analysis (ABA), a therapy frequently used for children with Autism Spectrum Disorders.

Signing onto the bipartisan letter are Congressmen Jim Moran (D-VA), Frank Wolf (R-VA), Steny Hoyer (D-MD), Del. Eleanor Holmes Norton (D-DC), Elijah Cummings(D-MD), Bobby Scott (D-VA), Chris Van Hollen (D-MD), John Sarbanes (D-MD), Donna Edwards (D-MD), Rob Wittman (R-VA), and Gerry Connolly (D-VA).

“We applaud the decision to reclassify ABA as a medical therapy covered under FEHBP. At the same time, we are disappointed that families in many areas around the country, including our own, are not benefiting from this decision,” the lawmakers wrote. “All federal workers, not just a fortunate few, should have plans that cover ABA.”

Beginning in 2012, FEHBP allows, but does not require, health plans to cover ABA. According to the organization Autism Speaks, only 67 state-specific plans offered ABA coverage for 2013 and the Washington Post has highlighted that no FEHBP plans in the National Capital Region cover ABA.

UN Report Mentions the Judge Rotenberg Center

Previous posts have discussed torture at the Judge Rotenberg Center.  Emily Willingham writes at Forbes:

Some practices used as “therapy” for autism in the United States amount to torture, a U.N. representative says. The U.N.’s Juan Mendez is the organization’s special rapporteur on torture, and in his report examining torture worldwide, he’s called out the only facility in the United States that uses “skin shocks” to ‘treat’ people with severe mental illness or developmental disabilities, including autism. That facility is the Judge Rotenberg Center (JRC), formerly the Behavioral Research Institute. While it once was located in California and then moved to Rhode Island, the facility is now sited in Massachusetts. Mendez expresses concern in his report (p. 84) that if Massachusetts becomes too hot to hold the JRC, the center might simply relocate again, and he urges action at the federal level to end the use of such aversives nationwide.

Red Tape and the New Jersey Mandate

In Newark, New Jersey, the Star-Ledger reports:

Parents of children with autism told an Assembly committee today that state regulations governing insurance coverage for their children's treatment are so confusing they had to hire an attorney and medical billing expert to help untangle them.

"I'm a medical doctor and the issues with coding were so involved I had to hire someone to help me," Meredith Blitz-Goldstein, an oral surgeon, told the Assembly Financial Institutions and Insurance Committee.

After listening to complaints for nearly two hours, Assemblyman Gary Schaer (D-Passaic), the committee chairman, ordered insurance companies and disability advocates to revise the regulations and make them easier for families to navigate or else lawmakers would do it for them.

“There will be a hearing convened six months from now, and for everyone’s sake I pray we have meaningful movement,” Schaer said.

The People Who Killed the Georgia Mandate

WXIA reports on the officials who killed mandate legislation in Georgia:

Representative Richard Smith said no. He's the Chairman of the House Insurance Committee, where the bill was sent. He wouldn't give it a hearing. And he announced he was sending it to the Mandate Commission where it wouldn't get out.

Senator Tim Golden is the Chairman of the Senate Insurance Committee. He wouldn't give the bill a hearing, initially. He said yes this week, but the hearing is next week -- too late.

Above them -- Speaker David Ralston runs the house. He could have moved the bill. Supporters begged him to help. He would not intervene.

Lieutenant Governor Casey Cagle runs the senate. He could have moved the bill. Supporters begged for his help. He would not intervene.

Google, Autism, and Hateful Terms

The Internet has been central in the rise of autism as a national issue.  But it has also provided a forum for those who hate and resent people on the spectrum.  In Newark, The Star-Ledger reports:

How would you feel if an internet search about your neurological condition produced a suggestion you be exterminated?

Autism activists have succeeded in getting Google to change the results of its automated search process so that offensive "hate speech" doesn't routinely show up as a suggested match.

Until today, typing "Autistic people should...." into Google's search engine would produce four so-called "auto-complete" suggestions: that they "be killed," "die," or "be exterminated."

In response, an autism activist group staged an online protest called a Flash Blog, which encouraged people with autism to counteract those violent suggestions with poetry and positive awareness of the developmental condition.

 The Star-Ledger updates the story:

With each passing day, Google’s effort to eliminate offensive terms about autism from its search engine suggestions is gradually taking effect.

Typing in the phrase “Autistic people should ...” last week produced so-called “auto-complete” suggestions that they “be killed,” “die” or “be exterminated.”

Four days later, there has been some improvement: Only one of the three auto-complete suggestions expresses violent hostility to people who have the neurological developmental disorder.

The latest top search result suggestion is “killed,” followed by “should autistic people have children” and “should autistic people drive.”

New York License Update

Previous posts have discussed a bureaucratic maneuver in New York to limit ABA services.  Autism Speaks reports:

Autism Speaks today reported it is making progress with high-level Cuomo administration officials and legislative leaders in resolving a bureaucratic dispute which has limited access to ABA services provided under New York's autism insurance reform law which took effect last November.

Under emergency regulations issued by the Department of Financial Services (DFS), practitioners of Applied Behavior Analysis (ABA) have to be state-licensed in order to qualify for insurance reimbursement. New York has no ABA license. In addition, the insurance reform law made clear that certification by the national Behavior Analyst Certification Board (BACB) would be sufficient for practitioners to be covered under the law.

"Autism Speaks has been in conversation on this issue with high-level state officials, who now understand the problems and the urgent need for a remedy," said Lorri Unumb, Esq., Autism Speaks vice president for state government affairs. "We have devoted substantial resources, both political and legal, toward resolving this issue as quickly as possible. For now, we believe that it is in everyone’s best interest to allow the legislature to work on a fast-track legislative solution that would create state licensure for BCBAs already certified by the Behavior Analyst Certification Board."

Unumb said Autism Speaks continues to regard BACB certification as an appropriate standard for behavior therapists and that it would continue to keep all options open in order to bring a quick resolution to the dispute.

Interview with a Military Mom

A number of posts have dealt with active-duty military members and veterans who have family members with ASD.  Autism Live interviews Shannon Strayhorn:

Aging Parents

The Sacramento Bee reports on aging parents of people with developmental disabilities.

Across the country, according to U.S. Census figures, 20 percent of adults below age 65 have developmental or physical disabilities – and almost 70 percent of the families of special-needs adults in a recent MetLife survey said they worried about their offspring's future.

The Alta California Regional Center, which serves 18,250 people with developmental disabilities in 10 counties, has about 5,000 adult clients who still live at home with their parents, just as Jessica and Lori do.

"And every one of those clients will age," said Phil Bonnet, the regional center's executive director. "People who grew up in our system are now middle-aged, and their parents are older."

As a result, said the executive director of Sacramento's Resources for Independent Living, Frances Gracechild: "We have this phenomenon of aging parents with increasing need for support themselves, and they're still taking care of their grown developmentally disabled children.

"It's quite a burden to meet when you're facing your 70s."

From the MetLife study:

Read more here: http://www.sacbee.com/2013/03/03/5231706/aging-parents-worry-about-adult.html#storylink=cpy

"Expensive Students" in Minnesota

The Minneapolis Star Tribune reports on the rising cost of special education in Minnesota, using an autistic boy as its peg:

Every school day, the boy, who has autism and doesn’t speak, came to the barren cell built only for him. Two adults spent all their time teaching him to communicate.

The price? $153,000 for a year of instruction, nearly 20 times what’s spent on a student without special needs. “The costs are staggering,” said Connie Hayes, superintendent of the public school district that built the classroom.

A decade ago, the boy would have been institutionalized. Today, he’s sent to public school. His education in Room 112 tells a larger story of a growing predicament confronting schools across Minnesota.

A sharp rise in students diagnosed with major disabilities is forcing many schools to take difficult and at times divisive new steps to tailor classrooms to the disabled students’ needs, no matter how expensive that gets.

Even as overall school enrollment declined over the past decade, the number of disabled students rose 14 percent, reaching 128,000. That includes a fivefold increase in students with autism.

Many of the state’s most psychologically troubled students also are being sent to school settings for the first time as mental health programs that once served them have been cut back or eliminated.

By law, state and federal budgets are supposed to cover about 90 percent of the cost of educating students with special needs.

But they are falling short, shifting much of the cost to local school districts. Spending on special education is soaring — it has risen 70 percent in Minnesota over the past decade to $1.8 billion this school year

The story goes on to tell the story of John Glenn Middle School, which spent $88,000 to build a classroom for one boy with ASD, ADHD and severe behavior problems.   In a telling phrase, the paper calls him "one of the most expensive students in Minnesota."  The cost of special education creates conflicts, pitting ASD students and their parents against school districts and parents of nondisabled students on the other.

In other contexts as well, ASD people bear the label of "expensive."

• From a report on insurance in Oregon: "But the problem for the company now is that if other insurers don't also start offering coverage, Kaiser could end up attracting lots of expensive new customers with autism. That would drive up their costs."
• From a report on Montana: "He’s become the most expensive state client using a state program for individuals with developmental disabilities that provides community-based services to people.