Employment and the Cliff

ABC News reports on ASD people facing employment challenges facing young people with ASD as they face the IDEA cliff -- the point they "age out" of school services.

For four years, Janet Mino has worked with her young men, preparing them to graduate from JFK High School, a place that caters to those with special needs in the heart of one of the poorest cities in America, Newark, N.J.

...

Mino, a whirling dervish of enthusiasm and warmth, is the subject of a documentary, "Best Kept Secret," that recently premiered at the Independent Film Festival in Boston and will be shown at this weekend's Montclair Film Festival in New Jersey.

Mino's efforts to find resources for her students are Herculean in a school that is touted as the state's "best kept secret." Her efforts are exacerbated by poverty and lack of funding, but her classroom is a happy place as she finds ways to reinforce that they are capable and worthy.
...
Director Samantha Buck ["21 Below"] and producer Danielle DiGiacomo, who is manager of video distribution at the Orchid, follow Mino and her students in their hardscrabble lives for 18 months leading up to their 2012 graduation.

"Autism is part of who we are as a society," said Buck, 30. "Across the country, young adults who turn 21 are pushed out of the school system. They often end up with nowhere to go; they simply disappear from productive society. This is what educators call 'falling off the cliff.'"

This year alone, 50,000 children with autism will turn 18, according to Sen. Robert Menendez, D-N.J., who has sponsored federal legislation to provide funding for adult programs. Within two years of high school, less than half of those with autism spectrum disorder have paying jobs, the lowest rate of any disabled group.

Autism Registry: Implementation Problems

The Charleston Daily Mail reports that although West Virginia has an autism registry, its numbers may not be comprehensive.

But achieving compliance with those reporting the diagnosis has proven difficult, said Julie O'Malley, the Autism Spectrum Disorder Registry coordinator. It's not just West Virginia, though - she says it's a national and international problem.

"Compliance has been an issue. The big centers - the ones that diagnose on a daily basis - are reporting. But we're missing tons of tiny reporting centers all over the state. They just aren't reporting," O'Malley said.

...
In 2004, West Virginia became the first state to establish an autism registry, according to Barbara Becker-Cottrill, executive director of the West Virginia Autism Training Center. Doctors are required to fill out a form and report it to the registry upon diagnosing an individual on the autism spectrum.

Although the registry does not contain names, it states that a case has been reported and from which county.

That information allows the state to apply for grants and resources necessary to help those on the autism spectrum.

...
In addition to compliance issues with diagnosticians, other situations complicate matters.
In some cases, families don't want to disclose that their child is having problems, and some families don't go for a diagnosis, Becker-Cottrill said.

California Legislation

A release from California Assemblyman V. Manuel Pérez:

AB 1231 and AB 1232 were heard in Assembly Committee on Human Services, both passing with votes of 6-0. AB 1231 [sponsored by the Center for Autism and Related Disorders (CARD)],authorizes the use of tele-health and tele-dentistry as treatment options within the State’s regional center system for developmental disability services. This will help ensure that Californians with Autism Spectrum Disorder (ASD) and other developmental disabilities have access to the services they require. ASD is the fastest growing developmental disability in California, affecting approximately two-thirds of all new consumers entering the State’s regional center system. As autism prevalence increases, innovative treatment models are needed to increase access to critical intervention services. This is not only beneficial for families living in remote or medically underserved parts of the state, but also because people with ASD experience a range of conditions that can interfere with the delivery of services in a traditional setting. Tele-health and tele-dentistry offer those with ASD the opportunity to interface with professionals in a preferred setting, such as their home or school, accompanied by professionals who can facilitate the interaction.

AB 1232 [sponsored by Autism Care & Treatment Today (ACT Today!)] seeks to ensure that California’s regional center system of developmental disability services is meeting the needs of an increasingly diverse consumer population. According to the “Preliminary Report by the Taskforce on Equity and Diversity for Regional Center Autism Services,” prepared by the Senate Select Committee on Autism and Related Disorders, many California families due to linguistic and cultural barriers lack access to vital behavioral therapy services. The State has had a quality assessment program in place for its regional center system for more than ten years, though it does not collect data on cultural and linguistic competency of services. That means that as the state grows more diverse, it is lacking important information related to the equitable provision and utilization of state services. AB 1232 addresses this critical issue in a cost-effective manner, gathering the data needed to ensure California’s developmentally disabled are being served in an equitable manner.

In The Desert Sun, Pérez writes:

The task force found that many California families — because of barriers related to language, culture, education level and/or where they live — lack access to vital behavioral therapy services. These barriers result in stunning disparities in service delivery. Annual spending in services per child with ASD is one illustration. In Orange County, an average of $16,686 in services is spent per child, whereas in the Coachella Valley the average is $4,920.

The work of the task force has also spurred changes in the service provider community. Among other things, both CARD and ACT Today! have translated parent training modules and outreach materials into other languages, and ACT Today! has launched a website, ACT Today Español. Also, ACT Today! has committed to fund $100,000 in grants to Coachella Valley families who have children with ASD that can be used to defray the cost of treatments, assessments and other necessary expenditures.

These actions enhance the work of dedicated local service providers, such as the Coachella Valley Autism Society of America. They also dovetail with other efforts to improve access to care in the Coachella Valley, such as the Clinton Health Matters Initiative and the California Endowment’s Building Healthy Communities.

The Employment Picture, Bright and Dark

The Bureau of Labor Statistics has some sobering data on disability employment.

Among Americans between the ages of 16 and 64, the May 2012 labor force participation rate was 77.3 percent.  Among those in this age group with disabilities, it was just 20.9 percent.  The unemployment rates were 12.8 percent and 8.1 percent.

Disabled people in this age group who were not working (either unemployed or not in the labor force), 70.8 percent reported a barrier to employment.  Of this group, 83.5 said that the barrier was their own disability itself.  Other reasons included lack of education or training (16.5 percent), lack of transportation (14.3 percent) and the need for special features on the job (12.3 percent).  The figures top 100 percent because some respondents gave multiple answers.

Consumer Affairs has a more hopeful story:

When it comes to autism, many people might be aware of the social challenges involved but not the professional ones. That’s not the case with Gary Moore, the founder of the nonPareil Institute in Plano, Texas.

Moore and his partner, Dan Selic, have created a software and training program for people on the autism spectrum to help them find employment and develop skills to work in the tech industry.
...

“Many of the high-functioning guys are brilliant, but they can’t get a job because they’re different,” said Moore. “We’re trying to build a future for them.”

Selic agrees and says although the training program is about job placement, it’s about teaching adults with autism how to be independent as well.

“If we can consistently get product on the market, instead of having this tidal wave of individuals look for a welfare answer or a governmental answer, what we’re focused on is getting them resources they need to learn and earn their own way in their lives,” he said. “We’re committed to giving them the skills that they need to build great products and compete in the marketplace.”

TV Report on Michigan Mandate

In Michigan, WEYI reports on the state's insurance mandate and interviews Lieutenant Governor Brian Calley, an autism dad and supporter of the legislation:

California Coverage

KGO-TV covers the California families who lost ABA services as a result of the phaseout of the Healthy Families Program:

A Friday release from State Senate President Pro Tem Darrell Steinberg:

With California’s landmark autism insurance coverage law set to expire in 2014, California Senate President pro Tempore Darrell Steinberg announced a bill that would extend a requirement for health insurance companies to provide coverage of behavioral health treatment for autism spectrum disorders as a medical benefit.

At a State Capitol rally with advocates for autism awareness, the California Senate leader called for a five-year extension to the sunset clause in Senate Bill 946 of 2011, informing supporters that this year’s Senate Bill 126 would extend the law’s provisions until 2019. The original law, authored by Senator Steinberg, ended the discriminatory practice of health insurance plans denying coverage of early intervention therapies for those with autism.

In a statement, Senator Steinberg said, “Nine years ago I served as the Chair of the California Legislative Blue Ribbon Commission on Autism and the idea of autism insurance coverage was a distant dream. Not anymore. We passed SB 946, California’s landmark autism insurance mandate. Those with autism now have access to the most extensive insurance coverage of any state in the nation. SB 126 will keep the dream alive.”

A recent report by the Center for Disease Control indicates that one in every 50 children lives with an autism spectrum disorder, representing a 300 percent increase since 2005. It is estimated that Senate Bill 946 is already providing intensive early autism treatment to more than 12,000 California children while saving state taxpayers up to $197.8 million in special education costs, which were previously funded by school districts or regional centers, according to the California Department of Insurance.

Concerned that some families have lost behavioral treatment for their children with autism due to the transition from the Healthy Families program to Medi-Cal enacted last year, Senator Steinberg has committed to working with Governor Brown’s Administration to correct these problems.

Senator Steinberg said, “While SB 946 is a proud achievement, it’s not nearly enough. This year we intend to fight to make sure all kids, regardless of whether they’re on public or private insurance, get the benefit of behavioral therapy. We must seek to include behavioral treatment for autism in Medi-Cal Managed Health Care to ensure children receive necessary and equitable services.”

Steinberg made the announcement yesterday at “Stand Up, Speak Out,” a statewide autism and disability rights legislative advocacy day, hosted by the Special Needs Network, Inc., Autism Speaks, Alliance of California Autism Organizations, and Center for Autism and Related Disorders. Senators Lou Correa (D – Santa Ana), Ben Hueso (D – San Diego) and Marty Block (D – San Diego) also spoke at the rally.

Medications and Autism

The New York Times reports:

With the diagnosis of autism on the rise and drug companies facing major setbacks in developing successful treatments, the University of California, Los Angeles will lead a $9 million effort financed by the National Institute of Mental Health to find effective drugs, officials said Wednesday.

Under a contract with the institute, U.C.L.A. will form a network of researchers at other academic centers that will try to identify promising new and older drug compounds quickly, and conduct early tests to see if they merit additional investment.

The program, part of the “Fast Fail” initiative at the institute, aims to determine within weeks whether a drug works, rather than the years it traditionally takes to evaluate a new drug.

...

Several major drug companies, including GlaxoSmithKline and AstraZeneca, have scaled back their research in the neurosciences because of the high failure rate, Dr. McCracken said.
Developing drugs to treat neurological disorders is difficult, in part because brain science is still evolving. The field is littered with drugs that scientists had hoped would be effective against diseases like Alzheimer’s and schizophrenia but that performed poorly in clinical trials.

Despite the setbacks, scientific advances in understanding the genetic underpinnings of autism have accelerated, leaving the door open for new drug discoveries, said Robert H. Ring, vice president of translational research at Autism Speaks, a patient advocacy group.

Blood Test?

At present, the only way to diagnose autism is by observing behavior, which is time-consuming and involves an element of subjectivity. (Contrary to myth, brain scans are not yet a diagnostic tool.) Shirley Wang writes in The Wall Street Journal about a potential blood test that might distinguish kids with autism from those with other developmental delays.

The 20-site, 660-patient project, expected to be launched Wednesday, is thought to be one of the biggest studies to date to examine a biological marker for autism-spectrum disorders, which affect one in every 50 children in the U.S.

The blood test aims to speed the diagnosis of autism, a condition characterized by poor social interaction and repetitive behaviors that can be hard to recognize when a child is very young.

The average age of diagnosis in the U.S. is about 4 years, older than is optimal, according to experts, because therapies are more effective when begun early.

"Time is the enemy here in improving outcomes," said Stan Lapidus, chief executive of SynapDx, a lab-services company in Lexington, Mass., that is sponsoring the trial.
...

The new study on autism is based on early work from several academic groups suggesting that it may be possible to distinguish the condition by looking at the quantity of particular molecules in the blood.

Isaac Kohane, a professor of pediatrics, health sciences and technology at Boston Children's Hospital and Harvard Medical School, who led some of this work, said his team found a "substantial and persistent difference" in molecules produced by about 55 genes that could identify about 75% of the children with autism. The accuracy is "not the best you've ever seen, but it may be good enough to start with," said Dr. Kohane, who serves as a consultant to SynapDx but isn't involved with its blood test.

There is reason for caution about such tests, as previous posts have explained.

Florida Charter School and Nonprofit School

In Tampa, WFLA-TV  reports on the Florida Autism Center for Excellence:

The teachers at the school (FACE) have experience with autistic students. Rosario credits the students and staff for helping her 4-year-old Louis say his first words. The school director Tiffiany Lassin says the school has an extensive wait list. "A lot of our students come from other schools and they don't get made fun of here," Lassin said. "Normally there's that shyness. In reality they don't want to be left alone but that's what happens because they don't fit in." FACE is one of four schools in the state for students with autism, but that's changing soon. FACE officials hope to open another school in Pasco in the fall to help cut down on the Tampa site's wait list.

Tampa Bay news, weather forecast, radar, and sports from


WFLA-TV also reports on a nonprofit school:
Tampa Bay news, weather forecast, radar, and sports from

The Costs of Caring

It is important not to see ASD people as "costs."  They can make great contributions to society.  Nevertheless, the costs of caring for people with autism -- especially children -- deserve frank attention.  Jeff Howe, the journalist who coined the term crowdsourcing, has a son named Finn, who is on the spectrum.  He writes at Money:

What we share in common with the parents of all those special-needs children is that our kids have almost nothing in common: Within the "autism spectrum" alone there is far more diversity than there is within the rest of the human population. As one clinical psychologist told me, "Saying you study autism is like saying you study the world of non-elephant animals."

Special-needs parents do share one thing: the eviscerating cost of our children. It's one of the awful ironies of this unchosen life. Not only do we divorce more frequently [not accurate -- ed.] and suffer from more mental health problems, but we pay dearly for the privilege.

... 

Well before Finn hits 22, a wave of disabled children will "age out," requiring massive amounts of state assistance. So just as baby boomers start putting unprecedented stress on government benefits, a slightly smaller but still significant population of disabled people will be in need of government help too.

"People assume the state will be there to help with their child," [financial planner John] Nadworny says, "but that's a really risky bet."
...

The final frontier for us (and, I suspect, many other families like ours) is to create a will and trust for our children. This is not straightforward. There are specialized vehicles that provide for the care of a kid like Finn without endangering his government benefits. There is also, critically, something called a letter of intent, which spells out the terms of care for a person who can't express those needs himself. But someone needs to serve as trustee; another person needs to serve as guardian.

How do you ask even a close family member to shoulder what we have taken on? There is, in our case, no obvious contender and no obvious solution.

Implementation Problems in Kentucky and California

In Kentucky, The Lexington Herald-Leader reports on implementation of the Kentucky insurance mandate:

he bill, which took effect in January 2011, required large group insurance plans to pay for autism-related therapy — up to $50,000 a year for children ages 1 to 6 and up to $12,000 a year for kids ages 7 to 12. In particular, it required coverage for a costly therapy called applied behavioral analysis — an intensive one-on-one therapy that uses behavioral techniques to teach children skills.

"It made everyone feel really great," said Shelli Deskins, director of the Highlands Center. "The legislators, the providers, families and everyone involved thought this would finally help kids with autism. But there are still families that are trying to get reimbursed for something that this law entitles them to."

In particular, insurance companies have balked at paying for services in an institutional setting such as the Highlands Center and the Academy at St. Andrews, a private school for autistic children in Louisville. Generally, insurance companies are not required to pay for treatment that is viewed as educational rather than medical.

"It's a loophole in the law," said Dr. Mark Miller, whose autistic daughter attends St. Andrews.
The school does not bill insurance for treatment, but Miller and his wife — who also is a doctor — tried to submit claims to Anthem Blue Cross and Blue Shield and United Healthcare for their daughter's treatment at St. Andrews.

Those claims were repeatedly denied because St. Andrews is a school, Miller said.

A recent post noted that hundreds of California children transitioning from Healthy Families to Medi-Cal may not have access to ABA in the Medi-Cal health plan. At The San Francisco Chronicle, Laura Shumaker provides some background:

...Medi-Cal “carves out” mental and behavioral health services from contracts with health plans. These services are to be provided by County Mental Health Departments for those with Asperger’s and Pervasive Developmental Disorder–Not Otherwise Specified or PDD-NOS (about 2/3 of individuals with ASD). County Mental Health Departments do not provide ABA therapy. Twenty-one Regional Centers (nonprofit private corporations that contract with the state’s Department of Developmental Services (DDS) to provide or coordinate services and supports for individuals with developmental disabilities) provide services for some of those with autistic disorder (individuals with autistic disorder make up about 1/3 of those with ASD). Funds for DDS and county mental health services have been cut over the past several years and while providers do their best to offer all children services, there can be long wait times and/or limitations on services. School districts may provide access to ABA therapy, but only as it relates to educational activities. As a result of all of the above, a majority of beneficiaries with ASD are unable to access the standard-of-care treatment for autism in Medi-Cal.

The transition of 875,000 children from the Healthy Families Program to Medi-Cal began in January, and 264,000 children moved in the most recent phase on April 1st. At that time, over 200 children receiving ABA therapy lost coverage of those services, despite families being notified by the state in writing that, “Your child will continue to have all of the same services during this move. Your child’s coverage will not be interrupted.”

In fact, families were specifically told: “The Medi-Cal program covers mental health services. Your county mental health plan will provide the services, and your Medi-Cal health plan will help coordinate them.”

However, this is not what many families are experiencing.

TRICARE Issues Comes Up in Hearing

Autism Speaks reports:

Critical questions regarding a one-year ABA pilot program ordered by Congress but yet to be created were left unanswered by TRICARE during a hearing before the Senate Armed Services Committee. Pressed by Sen. Kirsten Gillibrand (D-NY), who chairs the committee's personnel subcommittee, TRICARE Director Jonathon Woodson said the pilot program would cover ABA technicians, but declined to say when the program would begin, whether dollar caps would be imposed or when military families would begin receiving information. Congress directed late last year that the program be up and running by April 2, but Woodson said the Department of Defense had been unable to meet the deadline due to budget issues. "We are moving ahead with all due haste to set up the program," Woodson told Gillibrand.

The longstanding question of whether ABA is medical or educational came up in the exchange:

 

Autism and the Boston Bombing

From Autism Speaks:

The thoughts and prayers of all of us at Autism Speaks go out to the people of Boston, Massachusetts in the wake of the tragedy that occurred yesterday, especially the victims and their families. The devastation has been felt by people across the country and the world as we struggle to understand and deal with this horrible event. It is often particularly difficult for children with autism to fully understand such tragic situations and the feelings of grief and loss associated with them. Helping Children Deal with Tragic Events in the News, a resource from Mr. Rogers at PBS, is a great tool to help your children better comprehend and cope with yesterday's tragedy.

In addition, the Autism Speaks Resource Library contains a list of Bereavement and Grief Resources that you can find here.

In Seattle, KING-TV reports:

The Boston Marathon bombings present unique challenges no one wants to face when it comes to confronting fear and tragedy. In particular, children and people with disabilities have a hard time comprehending, advocates say.

“I think people make assumptions about I.Q. being relative to feeling,” explained Sylvia Fuerstenberg with ARC of Seattle. “I think that’s changing.”

Fuerstenberg said in the past, people with developmental disabilities would be sheltered from difficult news or events.

“We shouldn’t avoid the topic,” she continued, “but sometimes, we should let the person with the disability lead the understanding.”

That conversation is on the mind of Sammamish’s Janet Howe. Howe ran in the Boston Marathon and finished twenty minutes before the bombs exploded. She spoke with KING 5 from Philadelphia, as she prepared to fly home and explain to her autistic son what happened.
“There might be a tendency to assume they’re not aware of what’s happened,” Howe said. “There is a need to shelter, but there’s also a need to be honest.

In Amarillo, KFDA-TV reports:

Rose Burch was relieved to see her son's facebook status after watching the horror at the finish line of the Boston Marathon on TV.

Tim Burch, 42, who has lived in Baltimore for the past 20 years but grew up in Amarillo, never got to cross the finish line. He wasn't able to call home to Amarillo for about an hour after the explosions.

"He didn't tell me where he was, but he said I just wanted to let you know I'm okay," Burch said.

Tim was running to raise money for a little boy with Autism. Burch said that he would have been carrying the child across the finish line if he had ever got there, and she was terrified for the both of them.

"He's my baby," Burch said. "I was typing him a message to say 'keep going Tim, you're doing great' when I heard what happened. He likes for us to call him when he races, he can hear it in his ear and it helps him run."

Implementing the Combating Autism Act

Several weeks ago, the Government Accountability Office issued a report on implementation of the Combating Autism Act:

Department of Health and Human Services (HHS) agencies responded to the Combating Autism Act of 2006 (CAA) by establishing some new autism activities and continuing others. The Health Resources and Services Administration (HRSA) created a new initiative to address specific directives in the CAA. Through this initiative, HRSA expanded its existing training programs by requiring grantees to include training specific to autism. It also established new autism research grants and funded new state grants to improve services for children with autism. HRSA awards its autism grants under the authority of the CAA. The National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) continued their autism activities—some of which were undertaken in response to the Children’s Health Act of 2000—but did not create new programs as a direct result of the CAA. NIH continued to fund, expand, and coordinate autism research through its Autism Centers of Excellence and autism-specific grants and contracts. CDC continued to fund its regional centers of excellence for autism epidemiology and other activities, such as an awareness campaign. HHS’s Interagency Autism Coordinating Committee (IACC)—reauthorized by the CAA—assumed additional responsibilities to coordinate autism efforts within HHS and restructured its membership to include more nonfederal members. NIH created the Office of Autism Research Coordination to coordinate and manage the IACC. The CAA did not appropriate funds to any HHS agency. Nevertheless, overall spending on HRSA, NIH, CDC, and IACC autism activities increased from approximately $143.6 million in fiscal year 2006 to approximately $240.4 million in fiscal year 2011.

Autism, Insurance, and the Affordable Care Act

Jessica Contrera writes at the Journal and Courier (Lafayette, IN) that the Indiana mandate has limits.  Like other mandates, it does not apply to self-insured plans (e.g., Purdue University).  It also does not apply to companies (e.g., Caterpillar) whose insurer is based out-of-state.

So for parents such as Clay and Danielle Sheese, who work for Caterpillar and Purdue, respectively, there is no chance of getting therapy for an autistic child without buying an additional insurance package.

When the Sheeses purchased an additional insurance plan for Jacob in 2011, they chose one that covered him individually.

Today, such child-only plans no longer exist.

“When it seemed to insurance companies that the Affordable Care Act would pass, they needed to cut costs. One of the ways they did that was to eliminate child-only plans,” said Mary Rosswurm, executive director of Little Star in Lafayette. “Now you have to buy a plan that covers both a child and a parent together.”

Dual-coverage plans are far more expensive than child-only. Rosswurm said some of the insurance plans used at Little Star cost parents up to $900 per month. With their child-only plan, the Sheeses pay just over $300 per month. The price differs for each family based on their insurance plans. Some pay for treatment via co-pays, others have no additional costs once they pay their monthly insurance bill.

For some families whose insurance does not cover autism, buying an additional private plan is out of the question, especially when one parent cares for the child instead of working a paid job.

Such families can apply for insurance provided by the Indiana Comprehensive Health Insurance Association. Essentially, ICHIA is state-provided insurance for people who private insurance companies consider to be “uninsurable.”

But this is where the Affordable Care Act comes into play again. Starting in 2014, insurance companies will no longer be permitted to deny coverage based on pre-existing medical conditions. That means there no longer will be “uninsurable” people, and therefore no longer a need for ICHIA to exist.

The program will end on Dec. 31, or as soon as the federal insurance program laid out in the Affordable Care Act begins.

Update on Sheltered Workshops in Oregon

A previous post discussed a suit against sheltered workshops in Oregon. The Oregonian reports:

Gov. John Kitzhaber on Thursday announced plans to move more Oregonians with severe disabilities into the general workforce and gradually decrease state funding to nonprofit sheltered workshops.

The governor, facing a class-action lawsuit by critics of the workshops, issued an executive order affirming Oregon's plan to help the disabled find and keep jobs in mainstream workplaces.

A key goal of the state's Employment First plan is to halt a cycle in which special education students graduate high school and immediately take jobs in sheltered workshops that, by U.S. law, are allowed to pay less than the federal minimum wage.

Kitzhaber also announced he was appointing Mike Maley, deputy director of the state's Office of Developmental Disabilities Services, as Oregon's first Statewide Employment Coordinator for people with intellectual or developmental disabilities. Maley, a lifelong Oregonian who has spent his career working with the disabled, will help implement the executive order.

Minnesota Mandate

At The Minneapolis Star-Tribune, Maura Lerner writes:

This year, Minnesota legislators proposed one of the most generous mandates in the country, with no dollar or age limits on the coverage. But last week, in the face of growing cost concerns, a House committee scaled it back, setting a $50,000 annual limit per child.

Supporters have said they’re more optimistic than ever about an autism mandate, which has support on both sides of the aisle. “People just understand that this is a growing problem that needs to be addressed,” said Rep. Kim Norton, DFL-Rochester, one of the chief sponsors. “We’re all there. It’s just finding the funds.”

The debate has pit desperate parents, who believe their children’s futures depend on the most intensive treatment, against insurers and business groups that say the mandate will drive up health costs and lock in place a hotly contested brand of therapy.

Thanks to a quirk in federal law, the mandate also could cost Minnesota taxpayers millions of dollars at a time when the state budget is facing $150 million in health care cuts.

Initially, the mandate would affect only about a quarter of Minnesotans — those in state-regulated insurance plans. (Most large employers, which are self-insured, are exempt from state mandates.) But under federal health care reform, any new mandate would apply to plans sold on the new health insurance exchange, and state taxpayers would have to subsidize it. Officials estimate that would cost $3.5 million next year, and $10 million by 2016.

FDA and Compounding Pharmacies

As a previous post  noted, many families of ASD people use compounding pharmacies for alternative medications.  The FDA is cracking down, as Commissioner Margaret Hamburg explains on an FDA blog: post:

Ever since the recent fungal meningitis outbreak tragically took so many lives and injured so many others, we have been very clear that we all must act aggressively to help make sure nothing like this ever happens again. Last month I wrote in FDAVoice about the legislation and resources we believe are urgently needed to effectively oversee the evolving compounding pharmacy industry.

Above all, patient safety is our greatest priority. In addition to working with Congress and other stakeholders on legislation, we also have been very focused on evaluating our current surveillance and enforcement approach to compounding pharmacies and are using our existing, yet limited, authorities more effectively to protect consumers.

FDA has continued to conduct for-cause inspections upon receiving reports or complaints about serious adverse events related to drugs made by compounding pharmacies, or when states have requested our assistance.

And in coordination with state officials from around the country, we have just recently completed proactive inspections of 31 firms that are known to have produced sterile drugs in the past. We identified these firms using a risk-based model that included factors such as serious adverse event reports, historical inspection data, and reports of product quality problems. The inspections specifically focused on each firm’s processing of sterile drugs to identify firms that may pose a higher risk of producing contaminated sterile products. A summary of these inspections can be found on our website.

During the course of both our proactive and reactive inspections over the past few months, we observed concerning sterility practices, inappropriate conditions for sterile processing and other practices that create risk of contamination. As of this week, we have issued to all but one pharmacy that we inspected an inspection observation report (called an FDA Form 483, or just a “483”) that lists objectionable conditions observed at the facilities. The one firm not receiving a FDA Form 483 was not producing sterile drugs.

Medicaid and Health Care Costs

The Journal of Autism and Developmental Disorders has a new article by Li Wang, David S. Mandell, and colleagues: "Healthcare Service Use and Costs for Autism Spectrum Disorder: A Comparison Between Medicaid and Private Insurance."  From the concluding discussion:

This study is the first to directly compare healthcare utilization and costs for children with ASD enrolled in Medicaid versus private insurance using nationwide claims data. We found that average healthcare expenditures for Medicaid-enrolled children with ASD were four times higher than those of children enrolled in private insurance plans. ASD-specific healthcare costs alone in Medicaid were higher than the total healthcare costs in private insurance per child with ASD. Medicaid-enrolled children with ASD received many more services than those enrolled in private insurance. Every state in our study sample had greater expenditures per child with ASD in Medicaid than in private insurance.

The study identifies some possible reasons for the difference:

• Children in Medicaid may be sicker and therefore need more care. 
• Medicaid eligibility criteria are quite different, which may result in a more severely ill population.
• Children in Medicaid got more autism-specific services such as speech, OT, and behavior modification.
• Medicaid covers different services, some of which (e.g., long-term care) are costly.

A Newtown Mom on Autism

Many recent posts have discussed the killings at Sandy Hook.

At Mediaite, Tommy Christopher writes:

One of the many unfortunate consequences of the horrific slayings at Sandy Hook Elementary School has been an intermittent media campaign to spread cruel misinformation about people with Autism Spectrum Disorders. On Tuesday night’s Anderson Cooper 360, Newtown mom Nicole Hockley, whose 6 year-old son Dylan Hockley was killed on that darkest of days, helped to undo some of that damage by talking to host Anderson Cooper about her slain son’s autism, and the beautiful qualities he possessed, qualities which belie the stereotypes that have been spread by some in the media.

There has been a lot of bad reporting on the fact that the Newtown shooter allegedly had an Autism Spectrum Disorder called Asperger’s Syndrome, but very little attention paid to the fact that two of his victims, Dylan Hockley and Josephine Gay, also had ASDs. Nicole Hockley mentioned it during the 60 Minutes interview with the Newtown families, and she mentioned it as a positive. “He was always smiling, and always laughing,” she told interviewer Scott Pelley, “And he was very pure, possibly because of his age – he was six – and possibly because he was autistic.”

Christopher also discussed Anderson Cooper's interview with her:

“He loved looking at the moon at night,” Nicole continued, “and he ate spaghetti with his fingers. He was a very loving and empathetic little boy. He was autistic, and so had some learning difficulties and some social interaction difficulties, but he was a joy in our family, and I miss him terribly.”

Dylan’s parents have established Dylan’s Wings of Change, a charitable project “dedicated to provide support for children with autism and other special needs, committed to positive change for the future.”

Josephine Gay’s family has set up “Joey’s Fund” through the Doug Flutie, Jr. Foundation for Autism, to help families raising autistic children.

Autism and Medi-Cal

The Sacramento Business Journal reports that an unknown number of autistic children transitioning from Healthy Families to Medi-Cal may not have access to ABA in the Medi-Cal health plan.

The transition of 875,000 children from the Healthy Families program to Medi-Cal began in January; more than 264,000 moved in the most recent phase on April 1.

Since July 1, heath plans have been required to provide these services under state law, but applied behavioral analysis is not a specific covered benefit under Medi-Cal. The controversial and expensive therapy teaches young children with autism and similar disorders how to eat, communicate, play and learn.

Controversial?   From the Kennedy Krieger Institute (click link to find citations mentioned below):

Over the past 40 years a large body of literature has shown the successful use of ABA-based procedures to reduce problem behavior and increase appropriate skills for individuals with intellectual disabilities (ID), autism and related disorders. Several review articles and meta-analyses have been published summarizing this large body of literature. ... The large body of literature reviewed in these studies provides empirical evidence indicating that procedures developed using ABA-based principles are effective at assessing and treating a variety of socially important behaviors engaged in by individuals with a variety of diagnoses. Furthermore, ABA-based approaches for educating children with autism and related disorders have been extensively researched and empirically supported (e.g., Howard, Sparkman, Choen, Green, & Stanislaw, 2005; Koegel, Koegel, & Harrower, 1999; Krantz & McClannahan, 1998; Lovaas,1987; McGee, Morrier, & Daly, 1999; Strain & Kohler, 1998)

The federal Office of Personnel Management agrees about the evidence behind ABA.

The article continues:

Senate Bill 946, the law that requires health plans to provide ABA services, exempts Medi-Cal, said Norman Williams, deputy director of California Department of Health Care Services. “That’s why Medi-Cal doesn’t provide it.”

Behavioral health services are available to all Medi-Cal recipients, including those recently moved into Medi-Cal from Healthy Families, Williams said. “However, we are still assessing the specific availability of ABA services.”

Under Medi-Cal, children diagnosed with autism are provided with “medically necessary” services that may include speech, occupational and physical therapy, Williams said. Some children, based on their medical diagnosis, may qualify for specialty mental health services, including ABA.

The Healthy Families program is required to provide behavioral health treatment — including ABA — under the California mental health parity law, according to state regulations.

Social Blindness App

A project is under way to help adults on the spectrum with social skills. People could us it at home on computers or tablets:  it uses video-modeling to explain social situations where ASD people may not interpret it the same way as NT people. It walks them through body language gestures, mirroring exercises, quizzes, and more.  More here:

http://www.kickstarter.com/projects/jmitchell/social-blindness-app-for-aspergers-and-autism

Abuse in Antioch, California

As many posts have indicated, abuse cases are all too common. In California, The Contra Costa Times reports:

Two weeks after her autistic son came home with bruises on his neck and face, allegedly at the hands of his teacher, a frustrated Michele Smith complained to Antioch's top two special education administrators.

She says she received a stunning response: They asked her not to call police.

"They just wanted to sweep it under the carpet," Smith said in an interview.

That Dec. 10 conference call is one of the most incendiary revelations in an abuse scandal that has entangled the Antioch Unified School District since the filing of a federal lawsuit last week. Along with the suit filed by three families, lawyers released an email from Antioch special education director David Wax in which he tells colleagues he "de-escalated" Smith during the call, convincing her not to report the allegations against Mno Grant Elementary teacher Theresa Allen-Caulboy to police or the media.

This week, Smith described her end of the conversation to this newspaper.

"They said, 'We can handle it, you don't have to go make police reports,'" Smith said. "I don't trust them at all. They failed my child."

Administrators launched an internal investigation, as they told Smith they would, but did not report the suspicions of abuse to police or Child Protective Services as the law requires. But they failed to contain the scandal: Smith ignored Wax's request and went to police the same day.

Last week, KGO-TV reported:

The California Mandate and Co-Payments

The Santa Cruz Sentinel reports on implementation of the California mandate:

A January 2012 survey of 1,400 families by the California Autism Society found insurers paid for 13 percent of autism therapies, regional centers, 22 percent, school districts, 48 percent and private payers, 17 percent.

SB 946 was expected to save the Regional Center system $80 million in a year, according to San Andreas Regional Center chief Santi Rogers, who sent parents a letter in July advising them to contact their health insurance provider and request funding for behavioral health services.

For some families, co-pays could total $400 to $500, and pose a financial barrier to a treatment that has been effective.

Most of the 21 regional centers in California were covering co-pays, but six were not, according to Scotts Valley resident Peter McLean, who has a son, 16, with autism and serves on the Area VII board. San Andreas Regional Center, one of the six, posted a statement to that effect on its website.

TV Coverage of Michigan Blues Case

WOOD-TV in Grand Rapids reports on the federal case involving Blue Cross/Blue Shield in Michigan:

Judge: BCBS must pay for autism therapy

Study of Respite Care

Amber Harper and colleagues have a new study of respite care in the Journal of Autism and Developmental Disorders.  The abstract:

Parents of children with autism spectrum disorders (ASD) are at risk for having higher stress and lower marital quality than other parents. Survey data regarding respite care, marital quality, and daily hassles and uplifts were obtained from 101 mother-father dyads who were together raising at least one child with ASD (total # of children = 118). Number of hours of respite care was positively related to improved marital quality for both husbands and wives, such that a 1-h increase in weekly respite care was associated with a one-half standard deviation increase in marital quality. This relationship was significantly mediated by perceived daily stresses and uplifts in both husbands and wives. More respite care was associated with increased uplifts and reduced stress; increased uplifts were associated with improved marital quality; and more stress was associated with reduced marital quality. The number of children in the family was associated with greater stress, and reduced relational quality and daily uplifts. Results suggest policymakers and practitioners should develop supports for providing respite for families raising children with ASD.

From the article:

The findings of this study are relevant for policymakers, practitioners, and families of children with ASD. Policies that encourage broad accessibility of flexible, responsive, and compassionate respite care are warranted (Oliver and Mossialos 2004; Sawyer et al. 2010). Such policies should ensure equality of access to care regardless of the specific diagnosis, age, or behavioral challenges of the child or the socio-economic status, geographic location, or awareness of respite care availability of the family (Doig et al. 2009; Oliver and Mossialos 2004). Many parents are unaware of the options available. As one parent stated in a previous
study (Dillenburger et al. 2010, p. 18): ‘‘If we don’t know the questions to ask [about available services], then we don’t get any answers. Social services should be called secret services.’’ Targeting widespread media attention to the availability of respite care is recommended. [emphasis added]

Dillenburger, K., Keenan, M., Doherty, A., Byrne, T., & Gallagher, S. (2010). Living with children diagnosed with autistic spectrum disorder: Parental and professional views. British Journal of Special Education, 37, 13–23. 

Doig, J. L., McLennan, J. D., & Urichuk, L. (2009). ‘Jumping through hoops’: Parents’ experiences with seeking respite care for children with special needs. Child: Care Health and Development, 35, 234–242.

Oliver, A., & Mossialos, E. (2004). Equity of access to health care: Outlining the foundations for action. Journal of Epidemiology and Community Health, 58, 655–658.

Sawyer, M. G., Bittman, M., La Greca, A. M., Crettenden, A. D., Harchak, T. F., & Martin, J. (2010). Time demands of caring for children with autism: What are the implications for maternal mental health? Journal of Autism and Developmental Disorders, 40, 620–628.

New Law in New Mexico

A Friday release from the Governor of New Mexico:

Governor Susana Martinez announced today that she has signed House Bill 22, expanding coverage under the Health Care Purchasing Act (HPCA) to include treatment of Autism Spectrum Disorder. Any healthcare plan covered under the HCPA will be required to cover the diagnosis and treatment of autism. The HCPA covers school employees, state and local employees, and certain retirees.

“Autism not only affects those individuals living with it, but it also has an impact on their families and loved ones,” said Governor Martinez. “This bill will provide some measure of relief to autistic New Mexicans and their families by expanding many health insurance plans to include Autism Spectrum Disorder.”

In 2009, the New Mexico Legislature passed a bill that mandated autism coverage for children in group healthcare plans. However, that law only applied to commercial, private insurance and included a massive loophole that left thousands of public employees – including state employees, municipal employees, and public school teachers – without much-needed autism coverage.

“Caring for a child with autism is an expensive challenge without the right health care coverage,” said Shawna Childress, a teacher at East Mountain High School in Albuquerque. Shawna approached a fellow East Mountain teacher, Representative Jim Smith, about closing the loophole that denied autism coverage to public employees. “This law is a tremendous help and I’m grateful that Governor Martinez and Representative Smith responded to parents like me who are raising an autistic child.”

Robison on Autism and Violence

At CNN, John Robison has an essay on the purported connection of autism and violence:

The truth is, people with autism are far more likely to be victims of violence than perpetrators. Even in our supposedly enlightened society, anyone who is different can become a magnet for bullies and predators. Growing up with undiagnosed Asperger's, I learned that the hard way. So did my son, Jack (I call him Cubby), who also has Asperger's. I'd sensed that all my life, but it's also supported by scientific studies, in both medical and criminal justice research.

Sanjay Gupta has a video essay on Asperger's Syndrome

Wakefield Pitches Reality TV Show

Andrew Wakefield, who launched the vaccine theory and later lost his medical license for faking his results, has been pitching a reality TV show about autism. In the UK, The Guardian reports:

For three days at the end of January, the Renaissance hotel in Washington DC fills up with television executives from around the world.The Realscreen Summit is where the makers of reality TV gather to discuss ideas, negotiate deals and discover the next Apprentice or I'm A Celebrity. Among the estimated 2,200 people who had paid up to $1,600 (£1,050) this year to try to snag face time with an exec from Freemantle, TLC, Discovery or National Geographic was an Englishman in his mid-50s wearing jeans, a crisp, white shirt and loafers, and carrying a MacBook. On his badge were the words "Autism Team".

This man's pitch was a reality TV series about autism, and he hada short trailer on his laptop: an autistic child screams; another bites his mother's hand; another repeatedly and violently slams a book against his head. Then a narrator tells us that "every day across the world, medical symptoms of hundreds of thousands of people with autism are being ignored". Cue piano music and the titles, The Autism Team: Changing Lives.
...
The man in the white shirt and jeans punting the prospective TV series that day was Andrew Wakefield, coauthor of a now notorious 1998 study, published in the Lancet, that suggested a possible link between autism, gastrointestinal disease (it was Wakefield who coined the term "autistic enterocolitis", which Krigsman diagnoses in the Autism Team trailer), and the measles, mumps and rubella (MMR) vaccine. Afterwards, Wakefield called for the suspension of the triple jab, which caused widespread panic and is said by his critics to have resulted in a drop in the number of parents choosing to vaccinate their children. Cases of measles rose from 56 in 1998 to nearly 1,400 in 2008. In 2006, a 13-year-old boy became the first person in more than a decade to die of the disease in Britain.

"Outgrowing" Autism? More Misreporting of the Optimal Outcomes Study

Previous posts discussed news reports of a study on optimal outcomes, noting that they tended to suggest that kids with ASD can simply "outgrow" it.  Another such report has appeared on KABC in Los Angeles:

Autism is thought to be a lifelong disorder but new research produced some interesting results.

A small study suggests that some people diagnosed with autism can possibly outgrow it. The findings have got some experts changing the way they think about autism.
Jack's mom Leslie Griggs knew something was different about her son Jack.

"He wasn't making a lot of eye contact. He didn't have any words," Griggs said.
Jack has autism. Leslie says daily therapy sessions have made all the difference for him.

"He seems like he's more aware of us being in his world," Griggs said. "He's not in his own little world anymore."

While Jack has shown big improvements, a University of Connecticut study suggests some kids may actually outgrow the disorder.

One more time: The study does not use terms such as "outgrow" or "grow out of," which would suggest that the process is automatic, like losing baby teeth. The New York Times quotes lead author Deborah Fein:

Dr. Fein emphasized the importance of behavioral therapy. “These people did not just grow out of their autism,” she said. “I have been treating children for 40 years and never seen improvements like this unless therapists and parents put in years of work.” [emphasis added]

Scarborough Strikes Again

Joe Scarborough is at it again, with another comment about ASD.  Tommy Christopher writes at Mediaite:

Joe Scarborough, who is, himself, the parent of a child with Asperger’s Syndrome, infuriated Autism advocates and other thinking people when, in the days following the devastating massacre in Aurora, Co., revealed that whenever one of these things happens, the first thing he thinks of is Autism. “You have these people that are somewhere, I believe, probably on the autism scale, I don’t know if that’s the case here, but it happens more often than not,” Scarborough said, despite the fact that no evidence exists to support that statement, and evidence suggests, instead, that developmentally disabled people are far more likely to be victims of violent crime than perpetrators of it, and their attackers are overwhelmingly neuro-typicals like Joe Scarborough.

That was before the massacre at Sandy Hook Elementary School, which also touched off a flurry ofirresponsible reporting on ASDs, aided by the fact that the Newtown shooter apparently had Asperger’s Syndrome. Again, there is no evidence whatsoever that this contributed, in any way, to his crime, but the media has continued to focus on it anyway. It doesn’t help that law enforcement sources have consistently been leaking information, and highlighting evidence, about the shooter’s ASD, while ignoring the co-pathologies he was alleged to have had. If it’s ever actually confirmed that the Newtown shooter had an ASD (so far, the information has been gleaned through leaks,secondhand sources, and books found in the home), he would be the first.

That fact, however, didn’t stop Joe Scarborough from pre-judging the Newtown shooting, as he revealed Friday morning. “The second Mika and I heard the news that there was a shooting in Connecticut,” Scarborough said, “I said, ‘you watch. This kid is going to have a certain condition, I won’t say it here on the air because people will kill me for saying it.”

"The Story of Luke"

A number of posts have discussed the portrayal of ASD in popular culture.  "The Story of Luke" is a new movie about an autistic adult.  Variety reports:

“I wanted something entertaining that’s not too heavy so the movie has comedic and romantic elements,” said scribe-helmer Alonso Mayo. “Too many movies have the hard drama on this topic and are very depressing. In my experience, I saw a lot of hope, laughter and happiness. I wanted people to see a side they haven’t seen before. It’s not just something to be scared about.”

Even though Lou Taylor Pucci’s character shares the same disorder as Dustin Hoffman’s in “Rain Man,” Pucci took a different approach.

“The generalities are all there,” he explained, “their inability to focus, their repetition of ritual. But I needed to create a totally fictional character out of nowhere. What it ended up being was a morph of four different families with an autism member I had met who helped create somebody just for me to play.”

Sheltered Workshops in Oregon

The Oregonian reports:

Oregon unlawfully segregates people with disabilities in sheltered workshops instead of providing them more work opportunities in the public midst, federal authorities allege.

In a news conference Monday, officials with the U.S. Justice Department said they have joined a class-action lawsuit filed by people with disabilities against Gov. John Kitzhaber and the state of Oregon last year, demanding changes to the sheltered workshop system
...


Lane v. Kitzhaber was so named because it pits Paula Lane, who earned as little as 40 cents an hour in a sheltered workshop in Beaverton, against Gov. John Kitzhaber as Oregon's chief executive. The lawsuit aims to provide workshop laborers such as Lane, who has multiple disabilities including autism, with job coaches and other professional supports so that they can work at regular jobs in the public midst, said Bob Joondeph, executive director of Disability Rights Oregon.

As it stands, he said, the majority of working Oregonians with serious disabilities find themselves segregated into workshop settings. They often toil in jobs for nonprofits that pay poorly and sometimes give participants practice work when there are no jobs for them to do.
Oregon has not developed adequate services to offer people a chance to work outside the workshops, Joondeph said.

"A person cannot choose to use a service," he said, "that is not made available to them."

The President, Brain Research, and World Autism Awareness Day

At the White House blog, presidential adviser Valerie Jarrett writes of brain research:

Today marks World Autism Awareness Day, and it was filled with events, meetings, and information campaigns here at the White House, across the Obama Administration, and across the country. 

It was fitting that President Obama unveiled a bold new research initiative designed to revolutionize our understanding of the human brain. The BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative will be essential to advancing what we know about the complexities of autism. Originally referenced during the State of the Union, this ambitious new project was launched with approximately $100 million in the President’s Fiscal Year 2014 Budget, and ultimately aims to help researchers find new ways to treat, cure, and even prevent brain disorders, such as Alzheimer’s disease, epilepsy, and autism. 

As President Obama said today: “We’re still unable to cure diseases like Alzheimer’s or autism, or fully reverse the effects of a stroke. And the most powerful computer in the world isn’t nearly as intuitive as the one we’re born with. So there is this enormous mystery waiting to be unlocked, and the BRAIN Initiative will change that by giving scientists the tools they need to get a dynamic picture of the brain in action and better understand how we think and how we learn and how we remember. And that knowledge could be -- will be -- transformative.”

As with Tom Cole's comment, self-advocates might take exception to the characterization of autism as a "disease."