Trump, Autism, Disability

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.

Previous posts have discussed Trump's advocacy of this idea.

Maggie Haberman reports at The New York Times:

He has also promoted the notion that vaccines cause autism, a claim that has been widely debunked by doctors and scientists. “Just the other day, 2 years old, 2-and-a-half-years old, a child, a beautiful child went to have the vaccine, and came back, and a week later got a tremendous fever, got very, very sick, now is autistic,” Mr. Trump said at a Republican debate in September. When another presidential candidate, Michele Bachmann, then a Minnesota congresswoman, made a similar claim in the 2012 campaign, she was savaged by news media commentators for the remarks; Mr. Trump received little serious blowback.

Dominique Mosbergen writes at The Huffington Post:

What’s frightening, [John] Oliver added, is that “we have no way of knowing which of[Trump’s] inconsistent views he will hold in office … Will he stand by his statement that vaccines are linked to autism or his belief that Mexico is sending us rapists?” Or will he implement his plan to defeat ISIS by killing families of terrorists?

At Independent Journal, Andra Oyler recounts another candidate's meeting with her son, who has Down Syndrome.

Contrast this with Donald Trump’s horrific mocking of New York Times reporter Serge Kovaleski, who has a musculoskeletal disorder. How one treats those among us who are different is an indicator of character. A glimpse into the heart of the man. Trump is not just a flamboyant candidate who says outrageous things. Trump is, in every sense of the word, a bully. #NeverTrump took on real meaning for our family this week.

When Insurance Won't Pay

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Lynne Adkins reports at KYW-AM:

Advocates have been pressing insurance companies to pay for medicines taken by autistic subscribers, and currently people in 43 states are now benefiting according to Judith Ursitti, Director of State Government Affairs for Autism Speaks. She says if you’re left with the bill, there are options.

“You can look at the marketplace plans under Obamacare in your state too, if you go to healthcare.gov. Most of those do require coverage for pharmacy care for autism spectrum disorder,” said Ursitti.

An alternative is to challenge the insurance company’s refusal to pay by filing a complaint with your state’s Department of Insurance.

Alexandra Carter reports at WHNT-TV:

Alabama is one of just seven states that does not mandate insurance coverage for autism therapies. The recommended therapy can cost families upwards of $60,000 per year.
Applied Behavior Analysis or ABA is the gold standard for autism therapy, recommended by doctors, specialists and insurance companies.

"They need it for everyday life, they need it for when they get older if they want jobs or families of their own, to go to college. This therapy helps them achieve those goals," said Summer Stewart, mother of Eli, a child with autism.

The only problem is, ABA therapy is expensive and in Alabama, not covered by insurance, which means families must pay out of pocket.

"To our family it's like having two additional mortgage payments every month," said Eli's dad Brian.

Oklahoma: Autism Doesn't End with the School Day

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Opponents of insurance mandates say that schools should provide autism services. At Tulsa World, Carey Cadieux Ward writes:

But autism doesn’t end with the school day. What about children with autism who are unable to speak or communicate in any way? What about those who suffer from behaviors that cause them to hurt themselves or others, keeping them from even walking through the school doors in the first place?
...

The bad news is that health insurers in Oklahoma deny these treatments, saying that the schools should handle them. I wonder if the real assumption health plans are making is related to the cost of covering it. It’s a valid concern. Health insurance is expensive these days. But reasonable readers will recognize that other factors not originating in Oklahoma are causing that expense.

Actual claims data for autism coverage from multiple states show that the cost passed along to premiums payers is around 40-50 cents per month, less than the cost of a postage stamp. Meanwhile, the Harvard School of Public Health says it costs $3.2 million to care for individuals on the autism spectrum over their lifetime if they don’t get the treatment they need.

Some 43 states have passed autism insurance reform laws, including all states bordering Oklahoma. My assumption is that true fiscal conservatives who work hard and pay taxes in Oklahoma recognize the impact of those numbers.

Legislators from both parties recognize it too, and House Bill 2962 is the result. It’s a simple piece of legislation that requires health insurance to cover basic, evidence-based treatment for autism in Oklahoma.

Iowa Senate Passes Mandate

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Jenna Rehnstrom reports at KCAU-TV:

Iowa lawmakers are inching closer to big changes for families who have children with autism.

A bill has been passed in the senate that would require insurance companies cover autism treatment. Right now, only state employees have coverage. State Senator Rick Bertrand from Sioux City voted "yes" and has been supportive of the efforts.

Senator Bertrand says, "From a policy standpoint you just keep whittling away. You know that the support was very very minimal [at first], to give this access to parents to treat autism as a chronic disease as opposed to an acute disease; again every year you pick up a little more support and I'm proud to say this was the year we got it through the senate 41-7."

The bill now moves on to the Iowa house.

Special Education in Los Angeles

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

At PBS NewsHour, John Tulenko of Education Week reports on special education in Los Angeles:

JOHN TULENKO: Eighty-nine students from McBride and other schools moved into Grand View, increasing its special education population by 50 percent.
Most of the new students spend the majority of their day in classes like Maria Ventura’s. She teaches eight students on the autism spectrum. To help develop their social skills, every morning, she invites kindergartners to her classroom for a shared lesson.
MARIA VENTURA, Special Education Teacher: This is circle time. As a kindergarten teacher, I used to do that. And so when becoming special ed, I collaborated with another kinder teacher and said, you know what, bring me your kids, so that my kids can use them as a model.
Now you can’t even tell the difference between my kids and the gen-ed kids, because they have learned by watching their peers, oh, this is how I need to sit in a class.
JOHN TULENKO: Looking around the room, I noticed that nearly half the students with autism weren’t participating.
You’re bringing them together, but maybe they’re still staying apart.
MARIA VENTURA: Well, I can’t force it on them. It’s basically their demeanor and how they do it. For example, Sean and Austin and Marigold, they’re much more open to change. Depending on David’s temperament, if he’s not having a good day, I don’t want to force it. We slowly bring them in when they’re ready, because, if we rush them, then it actually goes against what we’re trying to do. We wanted to make a good experience for them.
JOHN TULENKO: Right.
MARIA VENTURA: Yes.
JOHN TULENKO: So it takes time.
MARIA VENTURA: Exactly. It does take time.

Euthanasia and Autism in Europe

In The Politics of Autism, I write about the dangers of eugenics and euthanasia.

At The Washington Post, Charles Lane writes of an autistic Dutch psychiatric patient Dutch psychiatric patient known as 2014-77.  Despite his doctor's qualms, he requested and got a fatal dose of drugs.

Thus did a man in his 30s whose only diagnosis was autism become one of 110 people to be euthanized for mental disorders in the Netherlands between 2011 and 2014. That’s the rough equivalent of 2,000 people in the United States.
...

According to an analysis of 66 of the 110 cases from 2011 to 2014, by psychiatrist Scott Kim of the National Institutes of Health and two colleagues, Dutch psychiatric patients were often euthanized despite disagreement among consulting physicians as to whether they met legal criteria. In 37 cases, patients refused possibly beneficial treatment, and doctors proceeded anyway.
...

Among the obvious risks, Columbia University psychiatrist Paul S. Appelbaum writes in a companion article to Kim’s, is “inducing hopelessness among other individuals with similar conditions and removing pressure for an improvement in psychiatric and social services.”

“Will psychiatrists conclude from the legalization of assisted death that it is acceptable to give up on treating some patients?” Appelbaum asks.

Some doctors already have. In 2009, a 37-year-old Belgian woman became distraught after a romantic breakup and began seeking a doctor to euthanize her, per that country’s law, which is similar to Holland’s.

The woman, Tine Nys, had a history of mental illness, including a teenage suicide attempt, but had more recently been doing well. In February 2010, however, she received a new diagnosis of autism and, two months later, a lethal injection. Her two surviving sisters have recently come forward to denounce the administering physician’s “nonchalant” attitude.

Autism, Medi-Cal, and California Regional Centers

In The Politics of Autism, I discuss services for the disabled.

Regional centers are private nonprofits that contract with Califorinia's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families help find and access a variety of services.

David Gorn reports at California Healthline:

According to children’s health advocates, roughly half of the providers who work with the 9,000 children with autism at the state’s regional centers could be excluded from seeing those kids as the state shifts to managed care.

Beginning March 1, the state Department of Health Care Services will start the transition at 21 regional centers across the state. These centers are nonprofits that contract with the state to provide services for people with developmental disabilities.

State officials say the regional centers will continue to serve the kids. The children will not experience a disruption in service because no one will lose a provider without another one lined up, they say.

The change is merely a shift in payment systems, according to state officials — moving from a Medi-Cal program run by the regional centers to one coordinated by managed care companies.

But as a practical matter, advocates say, the families of up to half of these kids could find themselves searching for new providers. The reason: The state’s new rules seem to exclude longtime providers from payment unless they are supervised by people with newer credentials.

The article quotes Dan Unumb of Autism Speaks: "If you’ve eliminated half of the providers in the regional centers, where are you going to get new providers?” Unumb said. “Where is the other half going to come from? That’s the big question. How are they going to do this?”

State Senator Holly Mitchell has introduced legislation (SB1034) to address the problem, but it may not take effect in time.

“What’s going to happen is there are a whole group of providers who can’t serve the kids they’ve been serving. So in practical terms, you’re going to have kids who are not having continuity of care,” Unumb said.

The department has promised “continuity of service,” which is slightly different from continuity of care, Unumb said. The state doesn’t have a legal obligation to ensure beneficiaries keep the same provider.

“Folks feel they were misled,” Unumb said, “because this should just be a financing change. Families aren’t going to be perusing the State Plan Amendment and then cross-referencing the Institutions and Welfare Code to see if they can keep their provider. This whole thing is so unnecessary.”

TRICARE Cuts

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

From Autism Speaks:

Applied Behavior Analysis (ABA) is an effective, evidenced-based treatment for ASD. In 2014 TRICARE, the Department of Defense (DoD) healthcare program for military servicemen and women and their families, implemented thoughtful and necessary changes to its coverage of ABA through its Comprehensive Autism Care Demonstration (ACD). In late 2015, TRICARE announced reimbursement rate cuts for ABA therapy provided through the ACD. The rate cuts were announced without supporting written analysis.

The details of TRICARE’s proposal have now been released. Autism Speaks is concerned that the rate cuts will reduce access to ABA services. Shortages of Board Certified Behavioral Analysts (BCBAs) already exist near Fort Campbell, Fort Sill, Wright-Patterson Air Force Base and other locations around the country. The DoD’s own studies indicate that TRICARE’s proposed rates for technicians are significantly below the national average. If adopted, the rate cuts might lead providers to leave TRICARE’s networks or give priority to children with other types of health insurance.

The reimbursement rate cuts risk a rollback of the substantial progress TRICARE has made in meeting the needs of military family members with ASD. Autism Speaks urges that reimbursement rates not be cut before the ACD is completed in 2018. At that time TRICARE should undertake a comprehensive analysis of ABA services, including reimbursement rates, to assure adequate coverage and access for TRICARE beneficiaries.

Amy Bushatz reports at Military.com:

"The ABA treatment for persons with autism and the proposed rate cut is something that I'm concerned with the timing of," Sen. Thom Tillis, a Republican from North Carolina, told a panel of experts a Senate Armed Services subcommittee hearing this week.

"I think we may be making a mistake cutting treatment options below the national average and produce a bad outcome for something, I think, that has been proven to be highly effective and highly beneficial to those that take advantage of the treatment," he added.
...
Dr. Jonathan Woodson, the Pentagon's assistant secretary for health affairs, told the committee that Tricare is keeping a close watch on whether or not there are enough providers.

"Certainly we'll be monitoring the situation very closely, and should we find in any locality that it's been adversely affected, we will make rapid changes," he said.
Sill Sen. Kristen Gillibrand, a Democrat from New York, worried that the Tricare-ordered RAND study is "misleading."

"I have some specific concerns in regards to the studies and the methodologies, because I don't think they are reflective of the cost, so I'd like to request some follow-up information specifically on that, and further consideration, because I think it's inadequate," she told Woodson during the hearing. "I think your study is misleading in its outcomes … I'm very concerned that there will be negative consequences for patients."

Mandate Limits

In The Politics of Autism, I write:

The details of insurance mandates vary from state to state. Many have age limits and caps on what insurers have to pay. Because the Affordable Care Act forbids annual dollar limits on essential health benefits, insurers in these states may be able to convert these limits into non-dollar limits (such as a cap on the number of ABA sessions each year). [Lorri] Unumb writes of a visual aid that she and her husband designed: “We set to work designing a double-wheel that would show the 50 states on the big outer wheel and the various types of health insurance on the inner wheel. Only if you’re lucky enough while spinning both wheels do you get coverage for the treatments your child needs.”

There are no exact figures available, but suppose that we take the total number of autistic people and subtract the following:

• Those in states without mandates;
• Those who live in states with mandates but are under exempt, self-funded plans;
• Those with individual and small group policies to which post-2011 mandates do not apply, and
• Those who have already gone over the various limits and caps.

The remainder surely makes up a minority of the autistic population.

At Stateline, Jen Fifield writes:

[Even] in states that require coverage, families can have a hard time getting it.

After the law passed in New York in 2011, families couldn’t get the coverage for two years due to a licensing problem. The state Department of Financial Services was telling therapists they needed to get an ABA license in order to receive insurance reimbursement, yet the state had no ABA license available. In 2014, the Legislature amended the law, creating a licensing procedure.

In states such as New Jersey, some families have trouble finding therapists who will take their insurance, said Peter Bell, CEO of Eden Autism Services, a nonprofit there. Bell said some insurers’ plans reimburse therapists so little for the therapy that Eden cannot afford to accept them.

Medicaid reimbursement rates also are low in some states. In South Carolina, for example, Medicaid pays up to $15 an hour for therapists who normally charge $50 an hour and $58 for board certified behavior analysts who typically charge $125, Unumb said.

In a handful of states, such as Massachusetts, there is better access to coverage. The Massachusetts mandate includes small businesses and individual plans, and there are no caps. In addition, 62 percent of people working for companies that insure their own workers, which aren’t subject to the mandate, have coverage because their employers have chosen to offer it, according to Amy Weinstock, director of the Autism Insurance Resource Center at the University of Massachusetts, which helps families find coverage.

Training Deputies in Los Angeles County

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand.

At the San Gabriel Valley Newspapers, Rebecca Kimitch reports that the Los Angeles County Sheriff’s station in Industry has a simulator to develop aimed at honing deputies’ verbal skills.

Before the deputies even started the simulation exercises last month, they were armed with new training on how to recognize someone who might be in a mental health crisis or have a developmental disability, such as autism.

The guidance in the latter is particularly remarkable. While police departments across the country have boosted their mental health training in recent years, training in how to handle people with autism and other developmental disabilities is relatively uncommon, according to Kate Movius of Autism Interaction Solutions, who conducted the autism training in Industry.

But it is becoming increasingly important, Movius said. Autism is on the rise and so are the number of encounters people with the disorder have with the police, as victims and suspects. People with developmental disabilities are seven times more likely to encounter law enforcement than other people, she said.

That is precisely why Industry Councilwoman Cory Moss, whose son has autism, asked Industry to fund the specialized training.

“I just have heard about these situations with police and I think, ‘God, it sure sounds like it could have been someone with autism,’ ” she said.

Because autism isn’t often readily visible, getting officers to recognize the signs is key, Movius said, particularly because some of the behaviors — slowness to respond to directions, unwillingness to communicate — can escalate an already tense situation.

Industry deputies were trained to use different strategies to respond, such as: slowing the situation down, assigning one person to talk, involving the caretaker of the subject/suspect, speaking slowly and simply, and offering a smartphone or pen to someone who is completely non-verbal.

“Officers tell me they approach situations completely differently now,” Movius said. “It is more, ‘how can I help this person’ and not as much ‘this person is being noncompliant.’ ”

"There Is No Help Here"

As I explain in The Politics of Autism, Ieven when funding is available, providers of needed services are frequently in short supply.

Once parents get past all the red tape, they often find that providers are scarce. Rural states may be especially short on behavior analysts, who tend to prefer to work in large metropolitan areas that have greater educational and technological resources.  If psychiatric help is necessary, it may be hard to get. There is a shortage of child psychiatrists, and insurers are of little help in finding them.  When The New Haven Register called several doctors’ offices listed on Aetna’s website as “Psychiatry, child and adolescent,” they found none who actually treated pre-teen children.  One doctor said of the rosters of providers issued by insurance companies, “Their lists are never correct.”  More generally, psychiatrists are less likely than other physicians to accept insurance.  A national survey found that barely half said they accepted private insurance and only 43 percent accepted Medicaid.   

At Buffalo's WKBW-TV, Katie Morse reports on an upstate New York family:

The Cordones are sharing video of James in crisis mode because they want other families to know what they're day-to-day is like.

James goes to school at Autism Services Inc., but when his behavior got so severe, his family had to look elsewhere for help - and here's what they found.

"There is no help here. There is no help in New York State," explained Debbie.

So James, like many kids from Western New York, had to leave the state, ending up at a specialized program in Maryland. The Cordones uprooted their lives and spent eight months getting James intense treatment at Kennedy Krieger in Baltimore. It's something a lot of families can't do.

 

The Screening Controversy

In The Politics of Autism, I discuss screening and diagnosis.

At Philly Voice, Sharon Lurye reports on a Drexel professor's pushback against the U.S. Preventative Services Task Force statement  on autism screening.

"Far too often, if you wait until there's clinical concern, you've lost of a lot of critical intervention time," said Diana Robins, associate professor at Drexel's Autism Institute.

Robins was the lead author of a paper calling for universal autism screening. The paper was published in late January after researchers learned what the national committee was going to recommend.

"It is important to develop a body of research showing long-term health-related outcomes from screening, but waiting until that literature is complete does a disservice to the thousands of toddlers in need of screening and early detection with each passing year," wrote Robins, along with 14 other autism researchers from across the U.S.

...

There is a risk that universal early screening could increase the number of false-positives, i.e. diagnosing children with autism when they don't actually have it. Intensive interventions like Applied Behavioral Analysis are quite expensive and there might not be enough experts in the U.S. to respond to an increase in autism diagnoses.

However, the task force stated in its report that it found "little evidence on the harms of screening and treatment."

"The truth is even the children who might be considered a false-positive because they don't have autism usually have other development delays or concerns" and could thus benefit from early screenings, Robins said.

Autism and Police in the UK

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand.

A release from the University of Bath:

Seven out of ten autistic adults were dissatisfied with their experiences with the police, reporting discrimination, a lack of clarity and feeling that their needs were not met, according to a new study published by psychologists from our University with colleagues at City University London.

These responses, which are published in the Journal of Autism and Developmental Disorders, were echoed by the experiences of police officers in England and Wales, with one in five police officers being dissatisfied with how they had worked with autistic individuals and only a minority of police officers having received training on autism.

The results emphasise the need for training that is tailored to specific policing roles, such as uniformed officers and specialist interviewers.

Involvement with the police can be a difficult experience for anyone, but especially for someone with autism. There are no figures for autistic involvement in the criminal justice system, but evidence suggests that individuals with autism can and do come into contact with the legal system, as victims, witnesses and suspects.

There are over 700,000 people with the condition in the UK, but detecting autism isn’t easy as there is no characteristic appearance associated with the condition – autistic people look just like anyone else, and not all behaviours associated with autism are very obvious.

Speaking about the study, Dr Katie Maras from the Department of Psychology, who co-authored the report, explained: “It is essential that police feel better equipped with role-specific training about autism, and that they have the institutional support that allows them flexibly adapt their procedures in order to better support people with autism.”

Co-author Dr Laura Crane from City University London said: “Contact with police can be a stressful event. As a result, police officers, especially those in frontline roles, need to be aware of possible signs of autism.”

Such signs can include problems with social interaction (such as avoiding eye contact), problems with language and communication (literal understanding), and also poor behavioural flexibility (for example, obsessional interests).

To find out more about police officers' experiences of people with autism, the team used an online survey to gather the experiences and views of 394 police officers from England and Wales. They found that 42 per cent of officers were satisfied with how they had worked with individuals with autism, with 21 per cent reporting dissatisfaction (37 per cent gave a neutral response).

Reasons for this varied, but a variety of barriers were cited, such as time and organisational constraints, as well as a lack of role-specific training, with just 37 per cent of officers having received training on autism.

Using a different questionnaire, 31 autistic adults and 49 parents were asked about their experiences. They were also largely dissatisfied with their experience of the police and echoed the need for police training on autism. The majority of parents (74 per cent) and autistic adults (69 per cent) were dissatisfied with their experiences, reporting perceived or fear of discrimination, a lack of clarity and explanation, and feeling that their needs were not met.

In particular, many autism community respondents felt that an inappropriate physical environment (for instance interview rooms, custody suites) coupled with a lack of appropriate support and explanation led to emotional stress, along with breakdowns in communication.

Dr Crane added: “Autistic people are a vulnerable group within the criminal justice system. High quality training and support for police who may encounter autistic people within their role will ensure that the experience for all involved improves to the necessary level.”

...
To access the latest study 'Experiences of Autism Spectrum Disorder and Policing in England and Wales: Surveying Police and the Autism Community' published in the Journal of Autism and Developmental Disorders see http://link.springer.com/article/10.1007%2Fs10803-016-2729-1.
Read exclusive coverage of the story via The Guardian / Observer from Sunday 21 February 2016 http://www.theguardian.com/society/2016/feb/20/autism-police-need-better-training.

Pushing for a Mandate in Oklahoma

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Bill Schammert reports at KOKH-TV:

For the first time in nearly a decade, legislators are looking at the issue of insurance coverage for autistic children. On Wednesday, dozens of families from across Oklahoma gathered at the state capitol to make their presence known.

"We have really good momentum and a lot of positive support," mother Tara Hood said.

Hood is referencing House Bill 2962. She's the mother of two autistic children. Statistics show one in every 64 children will be born with autism.

"You get the news and it's a punch in the gut," she said. "Then in Oklahoma, you find out none of the [suggested] therapies are covered, so it's a double kick in the gut."

Bill Hickman writes at The Oklahoman:

As the father of a child diagnosed with an autism spectrum disorder, an attorney who has represented children with special needs, and chairman of the board of the Good Shepherd School for Autism in Oklahoma City, I'm grateful that state Reps. Jason Nelson and Jason Dunnington, both of Oklahoma City, have introduced House Bill 2962. This represents a bipartisan effort to enact an insurance mandate for autism coverage this legislative session.

Oklahoma parents who have children diagnosed with autism deserve the same treatment in insurance law as parents whose children are diagnosed with a life-threatening illness. Be it autism or a life-threatening illness, treatment is critical to the child and cost-prohibitive for most parents without insurance.

If 43 states and the District of Columbia can require autism coverage in their states, so can Oklahoma. I call on all citizens and lawmakers to support this quest and make certain the 1 in 68 Oklahoma children who need and deserve autism treatment receive it.

This isn't just a legal issue. It's also a moral one, and one that Oklahoma must finally address.

A Problem in Pasadena

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

At  KPCC-FM, Adolfo Guzman-Lopez reports in a lawsuit against the Padadena Unified School District:

At issue is the school district’s Focus Point school, founded in 2009 for special education students with behavioral problems. The school enrolls 67 students from third to 12th grade. 

The suit argues that the school provides an educational experience that is inferior to that offered at other Pasadena schools and that Focus Point's students are denied opportunities to participate in extracurricular activities and electives such as the arts.  

The lawsuit was filed on behalf of five current and former students at the school, who have disabilities including autism, attention deficit disorder, and emotional disturbances.“Those disabilities are not indicative of their capacity to learn, they don’t have cognitive disabilities that will cause them to learn at a rate below grade level,” said Candis Bowles, a lawyer for Disability Rights California, the Sacramento-based group that bought the suit. 

...
The suit claims that staff tried to control the behavior of one student, an 11-year-old referred to in the complaint as Tanya Doe, through excessive force and seclusion in what the suit calls "the boring room" and the district calls "the reflection room."

Iowa Mandate Bill

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Jodi Whitworth reports at WHO-TV:

ABA therapy is believed to be the only research based treatment for autism but it's also expensive, costing families about a thousand dollars a week. 

[Kerry] Lust says insurance companies repeatedly denied her son’s therapy and instead was given a Medicaid waiver for children with special needs but even that's short-lived. The waiver expires for children when they turn 9 - years -  old. 

Brandon is 8. 

A piece of legislation is moving through the statehouse that would require insurance companies to provide autism therapy coverage until the age of 21.

Cameras in School

In The Politics of Autism, I discuss problems in public schools.

WRDW in Augusta, Alma McCarty reports:

Autism 2016

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  As I explain in the book, Hillary Clinton has a long history with the issue, and has issued an autism policy statement for the 2016 campaign.  Marco Rubio helped pass autism insurance legislation in Florida.  And Trump continues to press the discredited idea that vaccines cause autism. At WIAT, Mark Meredith reports on comments by John Elder Robsison, John Donvan, and Caren Zucker.

The Red Tape Irony

"Every restraint and requirement originates in somebody's demand for it." -- Herbert Kaufman, Red Tape.

In The Politics of Autism, I discuss the red tape that pervades all aspects of the issue, from special education to  insurance to health care.

The Government Accountability Office reports that the US Department of Education tried pilot projects to reduce paperwork in special education. But states have been reluctant to take part -- because the pilot projects involve too much paperwork.

Despite Education’s efforts, no state applied to participate in either of the pilot programs. NASDSE [National Association of State Directors of Special Education] officials told us that the application requirements were much too resource-intensive for the potential value they would bring, and implementation of either pilot program would most likely require require additional staff that federal funding would not cover. Several states wrote letters to Education explaining their reasons for not applying for and implementing the Paperwork Waiver Program in particular, noting that the program would require more paperwork and staff, but provide little in the way of additional federal funds. For example, New York’s letter listed as key reasons for not participating the extensive requirements for participation, limited funding for the pilots, and the staff commitment necessary for both development of the proposals and ongoing oversight of the pilot projects. In a similar letter, Rhode Island noted that implementing the Paperwork Waiver Program would likely result in more paperwork—not less—as well as taking more time from staff.

A summary of the report:

In response to the 2004 reauthorization of the Individuals with Disabilities Education Act (IDEA)—the primary federal law governing education of children with disabilities—the Department of Education (Education) attempted to reduce administrative burden by creating pilot programs and publishing model paperwork forms, but states have used these tools sparingly. Specifically, Education created pilot programs allowing states to use multi-year rather than annual individualized education programs (IEP) to describe services to meet each student’s needs, and to waive certain federal paperwork requirements. However, no state applied for these pilots, citing a perceived lack of benefit, and inadequate funding to implement and evaluate the pilots. As required by law, Education also published templates, known as model forms, to help states streamline the process of preparing IEPs and comply with parent notice requirements in IDEA. Although some states and school districts adopted at least one of these model forms, they have used others primarily as a starting point to develop their own forms. State and district officials told GAO this allowed them to meet federal as well as state and local requirements, and provided better protection against potential litigation. Stakeholders were mixed in their views about the effects of other provisions intended to reduce administrative burden. For example, several stakeholders viewed a provision allowing states to use more grant funds for paperwork reduction activities as helpful; others said the effect of a provision eliminating benchmarks and short-term objectives for IEPs was largely negligible.

Stakeholders across 9 focus groups—3 each with state administrators, local administrators, and educators—said that state-imposed requirements contribute to the administrative and paperwork burden, but their views on the burdens and benefits of federal IDEA requirements varied somewhat. For example, in focus groups, educators expressed concerns about monitoring and documenting student progress, while local and state administrators expressed concerns, respectively, about IEP implementation and federal reporting requirements. Consistent with prior research, many educators in these focus groups estimated they spend roughly one to two hours daily on administrative tasks, and expressed concern about this taking time away from the classroom. Despite perceived burdens, stakeholders widely acknowledged that IDEA’s requirements play an important role in accountability. For example, educators said the requirements provide information about student strengths and limitations that help them assist the student, while state administrators said requirements aid planning and program development.

Education, states, and school districts have reduced administrative burdens by adopting new technology and using certain resource strategies. For example, several state administrators said Education’s electronic data submission system has made it easier to complete federally-required state performance plans. During fall 2014, Education launched a new electronic reporting system intended to, among other things, consolidate data collections and ease data entry. Some schools and districts have also adopted resource strategies, such as hiring data clerks to reduce administrative burdens, but these strategies can be costly.

Screening

In The Politics of Autism, I discuss screening and diagnosis.

Lisa Rapaport reports at Reuters:

While there’s little evidence screening or treatment harms children, follow-up tests and interventions may place unnecessary burden on some families in terms of costs and time, according to the USPSTF recommendations published today in the Journal of the American Medical Association.

But the recommendations, which are often used by government and private insurance providers to make coverage decisions, could eliminate funding for pediatricians to screen toddlers and preschoolers, Dr. Jeremy Veenstra-VanderWeele of Columbia University argued in an editorial in JAMA Psychiatry.

The American Academy of Pediatrics recommends screening all children for autism at 18 and 24 months, he wrote.

“This is what pediatricians are supposed to be doing, and should continue to do,” he added by email.

Screening kids even when parents and doctors don’t see symptoms may be of benefit to children who might otherwise fall through the cracks, Geraldine Dawson of Duke University argued in an editorial in JAMA Pediatrics.

From Autism Speaks:

Autism starts very early in brain development, and its symptoms can be detected by age 2. We have a broad consensus, based on research, that early intervention for autism results in better outcomes.Yet to our great disappointment – and against expert counsel – the US Preventive Services Task Force has refused to recommend universal autism screening. Unfortunately, the USPSTF statement risks misleading families – and health insurers – on the value of autism screening for all children.

Autism Speaks – together with the Autism Science Foundation – continues to wholly endorse the Bright Futures guidelines of the American Academy of Pediatrics, which call for continuous developmental surveillance and for specific autism screening at 18 months, 24 months and whenever a parent or provider expresses concern.

Disability, Autism, and Voting

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  As I explain in the book, Hillary Clinton has a long history with the issue, and has issued an autism policy statement for the 2016 campaign.  Marco Rubio helped pass autism insurance legislation in Florida.  And Trump continues to press the discredited idea that vaccines cause autism.

S.E. Smith writes at The Guardian:

In an election where gender and race are both popular topics of discussion, there’s a silent but formidable group of voters that no one’s talking about: disabled voters.

At last census, roughly 20% of the US population identified with some degree of disability, spanning a huge range of impairments across race, gender, age and class. Disabled people represent a huge electoral bloc, one Jim Dickson, the co-chair of the National Council on Independent Living’s voting rights subcomittee, contends is as formidable as other minority bloc voters.

But disabled voters don’t get much media attention – and substantial barriers lie between them and the polls. Some organizers want to change that, and are looking at ways to mobilize the disability vote.

Lisa Schur and Doug Kruse, researchers at Rutgers, have studied disability and voting extensively to explore the statistics of the disability vote and find out more about who is participating – and who isn’t.

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Organizing as a bloc could be tough, [Schur] admits, because not everyone with an impairment identifies as disabled, and people experience such varying degrees of disability. Blind voters are different from wheelchair users or deaf voters, she says, with their own interests.
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Dickson disagrees, though, arguing that disabled voters all have something in common: the experience of disability. His comments are in line with those of other disability rights activists, who acknowledge that disability is quite varied, but the priorities of disabled people remain extremely consistent.

Dickson, along with disability rights organizers Alice Wong and Andrew Pulrang, identified jobs as a key priority for disabled people, something that should be perking up the ears of the Sanders campaign. Economic inequality is a huge problem for disabled voters, who struggle with what’s known as the “benefits penalty” – disabled people who go to work risk losing benefits, so even in cases where people want to work, they are forced to stay home or lose healthcare, personal assistants and other supports that keep them living in their communities.

• • Schur and Kruse have assembled a bibliography on disability and voting.
• The National Council on Independent Living has links to resources on voting.

Iowa Mandate Legislation

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Erin Murphy reports at The Quad City Times:

Coverage of autism services would be required in insurance plans offered by some large businesses under legislation that advanced Wednesday in the Iowa Senate.

The legislation would add required behavioral analysis coverage for autistic Iowans who are not already covered by Medicaid or the state employees’ health care plan, which covers autism services.

Maria Valdovinos, a certified behavioral analyst from Des Moines who teaches at Drake University, testified Wednesday at a subcommittee hearing at the Capitol that for autism patients, access to behavioral analysis services is “necessary and so important.”

Roughly 3,000 Iowans receive autism services through the state health insurance plan, a Department of Human Services official said at Wednesday’s hearing.

Michelle Schoening reports at KTIV-TV:

The debate over insurance companies covering medical treatment for those with autism continues in Iowa.

A bill in 2010 gave Iowa state employees insurance coverage for autism treatments but not for every family.

A new bill proposed in the Iowa House and Senate will provide coverage for more than 1 million Iowa families affected by autism.

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A proposed bill in the Iowa Legislature would require all insurance companies to cover the diagnosis and treatment plan for those with autism under the age of 22.

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A co-sponsor of the bill said it's all about providing equal coverage for Iowa families.

"Expanding to allow everyone that type of coverage it would just be a matter of fairness," said Rep. Dave Dawson.

KTIV News 4 Sioux City IA:  News, Weather and Sports

An Argument for the Insurance Mandate

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

At The Journal Record (Oklahoma City), Bob Medley makes the case for an insurance mandate:

Oklahomans who pay their premiums every month have a chance to join the millions of families nationwide who have autism coverage. House Bill 2962 will change lives in every neighborhood of our state.

Providing coverage also makes sound, economic sense. If children with autism can access medically proven treatments, the core symptoms are much better controlled and the long-term cost of care will decrease.

The human benefits that come with autism treatment cannot be overstated, but the economic benefits seal the case. That’s why I’m among the growing group of Oklahoma residents urging state lawmakers to make that change, as every state that borders Oklahoma has done.

If Oklahoma insurers provided meaningful autism coverage, state taxpayers would save millions in lifetime costs for the current population of kids with autism. All for the investment of about 40 to 50 cents per member per month, which is what actual claims data reflects in multiple plans across the country that have been covering autism for several years.

A bipartisan group of legislators has come together to provide an Oklahoma-specific solution this legislative session. HB 2962 would simply require state-regulated plans to cover evidence-based treatments like speech, occupational, physical and behavior therapy when prescribed by a licensed physician and determined to be medically necessary.

This treatment is provided at a different level of intensity than special education services provided in school by our hardworking teachers. There the goal is to accommodate students, helping them to access the curriculum. Research shows that these taxpayer-funded services can be eliminated or dramatically reduced when children receive the medically necessary treatment provided in HB 2962.

Police and Autism in Northeast Florida

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers need training to respond appropriately.  When they do not, thing sget out of hand.

At WJXT, Joy Purdy explores police autism training in Northeast Florida's largest counties.

The St. Johns County Sheriff's Office has incorporated an autism curriculum into its annual in-service training for all officers.

The department has also made it an integral part of its Crisis Intervention Training, focused on multiple aspects of mental health.

The week-long, 40-hour CIT training is used by law enforcement departments nationwide and includes role-playing scenarios, videos, visits from area autism experts and families dealing with the disorder, as well as field trips to related facilities.

Sheriff David Shoar said his department has taken extra steps, making sure every employee, sworn or civilian, has the week-long block of training.
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The Clay County Sheriff's Office was the first local law enforcement department to incorporate autism experts from Wolfson Children's Hospital.

It now has it's own specialized mental health training unit, providing the knowledge in-house for all officers on a variety of issues, including autism.

The Jacksonville Sheriff's Office required all of its police supervisors to take autism training last April.

Now, every Jacksonville officer has, or is in the process of receiving, the same training, which is also now part of every Jacksonville police recruit's required CIT training.

Police encounters that have made headlines recently prove just how helpful and timely autism training has been for each of the three local sheriff's offices.

Speech language pathologist Lauren Papke, with Wolfson Children's Rehabilitation Center, said she discovered the area's first responders didn't have adequate autism training after she researched resources for a family that was concerned about their young child with autism who often ran away.

"We sought to fill that gap," Papke explained.

The program she and others created in 2013 is called SAFE Program Training: Safety Awareness for First Response to Elopement.

North Carolina Mandate

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

At The News & Observer in Raleigh, Colin Campbell writes about North Carolina's autism insurance mandate, which takes effect on July 1.

Sen. Tom Apodaca, a Hendersonville Republican who sponsored the autism insurance bill, said the legislation was the product of negotiations with insurance companies – which for years have opposed legislators’ efforts to require coverage.

Those companies ultimately supported last year’s bill, which caps adaptive behavioral treatment – a broader term for programs that include the Applied Behavior Analysis sessions Abbey attends – coverage at $40,000 per year and limits it to patients age 18 and under.

“We don’t need to put anybody out of business, but we do need to cover the families,” Apodaca said.

Apodaca’s bill won’t provide universal autism coverage in North Carolina, in part because the state can’t regulate federal insurance programs such as Medicaid. Autism advocacy groups say they’ll continue to lobby at the state and federal level to expand coverage further.

“I think all insurance legislation is generally incremental; you almost never get everything you want the first time around,” said Jennifer Mahan, director of advocacy and public policy for the Autism Society of North Carolina. “You’re going to have to make compromises or you won’t see legislation passed.”
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In addition to Medicaid recipients, the new law doesn’t include people whose insurance isn’t part of a large-group health plan provided by a company with 50 or more participants.

“State insurance laws cover a limited number of plans,” said the Austism Society of North Carolina’s Mahan. “This does not provide coverage for everyone out there.”

Given the steep cost of ABA programs, many families of children with autism can’t afford to sign up. “Insurance coverage is one of the big barriers to getting access to treatment, and for some people it will continue to be,” Mahan said.of negotiations with insurance companies – which for years have opposed legislators’ efforts to require coverage.

Those companies ultimately supported last year’s bill, which caps adaptive behavioral treatment – a broader term for programs that include the Applied Behavior Analysis sessions Abbey attends – coverage at $40,000 per year and limits it to patients age 18 and under.

“We don’t need to put anybody out of business, but we do need to cover the families,” Apodaca said.

Apodaca’s bill won’t provide universal autism coverage in North Carolina, in part because the state can’t regulate federal insurance programs such as Medicaid. Autism advocacy groups say they’ll continue to lobby at the state and federal level to expand coverage further.

“I think all insurance legislation is generally incremental; you almost never get everything you want the first time around,” said Jennifer Mahan, director of advocacy and public policy for the Autism Society of North Carolina. “You’re going to have to make compromises or you won’t see legislation passed.”
Read more here: http://www.newsobserver.com/news/politics-government/state-politics/article60119656.html#storylink=cpy