Autism Services: Pay Now, or Pay Later

Uncertainty and complexity are major themes of The Politics of Autism.

At Crain's Detroit Business, Ron Fournier writes about the Autism Alliance of Michigan and its "navigators." who answer the calls of autistic people and caregivers.

Navigators consult in-house specialists in autism education, clinical treatment, insurance and adult services. They refer callers to the cornucopia of uneven services available to people on the spectrum. Their notes go into a database, and they follow up on the callers for weeks, months or years — whatever is necessary.

Michigan legislators might cut state support for the program.

While I have a son with autism and I'm on the Autism Alliance board, this issue is bigger than my personal biases. According to Lt. Gov. Brian Calley, a Republican who has a daughter on the autism spectrum, the GOP legislation would jeopardize a variety of autism programs, as well as state services that improve mental health, combat child lead poisoning, give disabled people opportunities to live independently and that would provide caretakers a small raise.

Calley likes tax cuts and smaller budgets as much as the next Republican, but he considers these proposals to be short-sighted and fiscally foolish. It costs the state far less to give people with disabilities the tools they need to seek some measure of independence, Calley said, than it does to provide for them for life.

"If we get it right early, the long-term outcomes are better and more efficient. In other words, cheaper," Calley told me in a telephone interview.

A consistent theme in autism policy is very simple:  pay now, or pay later. 

100 Days: Trump, Autism, Vaccines

In The Politics of Autism, I discuss for the discredited notion that vaccines cause autism.  This blog has often documented Trump's support for this bogus idea. (He also has a bad record on disability issues more generally.) The story that Trump might appoint anti-vaccine activist Robert F. Kennedy Jr. to head a presidential commission -- whether on vaccines or autism -- provoked widespread criticism. Fortunately, he backed off.

Factcheck.org lists this item in "100 Days of Whoppers":

• Feb. 14: Trump said there has been “a tremendous amount of increase” in autism among children. Actually, scientists don’t know whether the increase in reported cases is due to an increase in autism itself, or to a broadening of the disorder’s definition and greater efforts to diagnose it.

At Buzzfeed, Dan Vergano wonders would would happen during a disease outbreak.

Complicating matters is the “‘new anti-vaccine' movement,” which Trump has publicly supported, outbreak expert Peter Hotez of the Baylor College of Medicine told BuzzFeed News, which claims there is a CDC conspiracy to hide the harmful effects of vaccines. (Needless to say, he and other doctors call this erroneous.)

Healthy young child goes to doctor, gets pumped with massive shot of many vaccines, doesn't feel good and changes - AUTISM. Many such cases!

— Donald J. Trump (@realDonaldTrump) March 28, 2014

For antivaxxers, Hotez said, “the one thing they all get behind is a government conspiracy.”

Public support for vaccination is a key factor in stopping an epidemic because successful efforts depend on “herd immunity” where a large proportion of the population needs inoculation to act as a firebreak on the spread of a disease. Defections from vaccination help explain outbreaks of whooping cough in California, mumps in Arkansas, and measles among the Amish in Ohio.

In a big epidemic, falling short of herd immunity can lead to an outbreak lasting far longer than necessary. Since 2014, the CDC has tracked 300 dangerous outbreaks in 160 nations, and 37 dangerous bugs, according to a recent Washington Post report on the administration’s failure to fill key public health positions.

Trump, NIH, and ASD

In The Politics of Autism, I discuss the National Institutes of Health.

Trump would cut its budget by $5.8 billion.

This week, the Inter-Agency Autism Coordinating Committee released data showing that NIH funded 57.6 percent of all autism research funding in 2013.

Insurance in South Carolina

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

Ashleigh Holland reports at WIS-TV:

The parents of children with autism say their needs can fall through the cracks in South Carolina - especially if their families don't have the insurance coverage they need to pay for expensive treatments.

A bill in the State House now aims to expand insurance coverage for those with autism. Autism advocates are pushing for it to pass, but it has stalled in the House.

Rep. Nathan Ballentine (R- Richland) sponsors H. 3747 in hopes of adding more insurance coverage to the expansion passed 10 years ago, under Ryan's Law.

Ryan's Law required state employee insurance plans and fully-funded large group plans to fund treatment like Applied Behavior Analysis (ABA) therapy for children with autism.

The bill filed recently would further mandate people on small group plans, which is small-business insurance plans, and individual plans to be covered by insurance.

Autism Speaks advocate Lorri Unumb works with the nonprofit group to fight for better autism treatment coverage across the country. Unumb is also a parent and Ryan's Law is named after her son. He was diagnosed with autism at a young age.

wistv.com - Columbia, South Carolina

Careless Headline

In The Politics of Autism, I discuss various ideas about what causes the condition.  I also write:  "If the science were not confusing enough, its coverage in the mass media has added another layer of murk.  News reports hype tentative findings and weak correlations as “breakthroughs” in the quest for autism answers. "  

USA Today is running a story about research into marijuana as a treatment.  Though the text of the story explains that the studies are ongoing and not conclusive yet, the headline uses the word "miracle," which is not in the article.

This headline is bad for two reasons.

First, there is a long, long history of "miracle" cures that ended in deep disappointment for autism families.

Second, in this particular case, the reference to marijuana might lead some families to try it. Though some states have legalized it for medical or recreational use, the federal government has not.  In other words, it is encouraging families to break the law and attempt a "treatment" that could have unanticipated consequences.

Texas Fails Military Families with Special Needs Kids

I write in The Politics of Autism: "[T]ime is on the school district’s side. A child is in any one school for only a few years, so services delayed are services denied. And in the long run, there is no long run. IDEA only covers people until their 22d birthday: after that, public schools may cut them off."

Brian M. Rosenthal reports at The Houston Chronicle:

Texas, which is home to more members of the military than all but one other American state, loves to proclaim its support for the armed forces. But for soldiers who have children with disabilities, there may be no worse place in the country to live, the Houston Chronicle has found.

A decade long state effort to cut special education costs, which only recently ended after being exposed, had an especially large impact on public schools that serve military families, according to interviews and data.

Meadows Elementary is a prime example. The school, within the walls of Fort Hood and attended largely by the children of troops, provides special education services to just 7 percent of its students, state statistics show. That is less than the state average of 8.5 percent, which itself is by far the lowest in the United States. The national average is 13 percent.

In 2004, the Texas Education Agency set an arbitrary cap on students in special education.

There are many reasons why military families were disproportionately hurt by the cap, experts said. Military families move a lot and do not make a lot of money, leaving them less able to fight schools. Soldiers also are trained to obey authority and often are loath to cause waves.

"I'm not surprised at the percentages," said Jeremy Hilton, a Navy veteran who has traveled the country to speak about raising a child with disabilities as a veteran.
Most kids of active duty troops move at least half a dozen times during their school years, and districts know that, Hilton said.

"This knowledge creates incentives for school districts to roll the dice in withholding services and supports, knowing that a military family is unlikely to be able to effectively hold a school district accountable," he said.

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Trump, Science, Autism

In The Politics of Autism, I discuss the issue's role in presidential politics.   In the 2016 campaign, a number of posts discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on science and disability issues more generally.

Jon Reid reports at Morning Consult:

On the campaign trail, President Donald Trump met with prominent vaccine skeptics and ranted about the debunked theory that vaccines cause autism. But as the administration approaches its 100-day mark, the White House has given few indications about the direction of its vaccine policy.
...
Despite Trump’s inaction, anti-vaccine activists feel emboldened. Vaccine skeptics held a rally in Washington last month, when they also lobbied lawmakers on Capitol Hill.

Andrew Wakefield, the author of a since-discredited study linking vaccines to autism who met with Trump during the 2016 campaign, remains optimistic that the White House will act on his cause, though he said he hasn’t had contact with Trump since their meeting last summer.

“I truly hope that President Trump will follow through on this,” Wakefield said in a phone interview.

The Huffington Post:

President Donald Trump has long perpetuated the debunked theory that vaccines cause autism. In January, while still president-elect, he went as far as to request that Robert F. Kennedy Jr., a fellow vaccine skeptic, lead a commission to investigate vaccine safety.

This disregard for science is among the reasons Sabrina Solouki, a second-year Ph.D. student in immunology and infectious disease at Cornell University, made a pilgrimage to Washington, D.C., on Saturday for the March for Science, a mass protest to rally scientists against what they see as Trump’s backward policies.

“The administration, by forming this safety commission, isn’t really doing a good job of listening to science — of science-informed policy,” she told The Huffington Post.

Solouki also wants to unite the scientific community, to push for it to do a better job of engaging with the public at large, and to send a clear message that scientists are against Trump’s proposed cuts to science.

Alabama House Approves Mandate

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

On Thursday, the Alabama House unanimously approved an autism insurance mandate Trisha Powell Crain reports at AL.com:

Rep. Jim Patterson, R-Meridianville, sponsored the bill, HB284, saying he wants to do the right thing for families who need help paying for the sometimes expensive therapy.
Introducing the bill on the House floor, Patterson said, "We're going to do something good for families in Alabama. This is what we come to Montgomery to do."

Alabama is one of five states with no requirement that insurance companies cover applied behavior analysis (ABA), the most common and scientifically supported treatment for autism.

Rep. Jack Williams, R-Vestavia Hills, worked to negotiate a compromise bill to contain costs while providing medically necessary services.

Williams added caps on coverage based on a person's age. There are higher caps for younger children, Williams said, because the earlier therapy can be started, the better the outcome.

Arresting a Ten-Year Old

In The Politics of Autism, I discuss interactions between police and autistic people.

With an utter lack of self-awareness, a sheriff's department that arrested an autistic ten-year-old is using its website to tout its support for Special Olympics.

Jacqueline Howard reports at CNN:

When John Haygood, a 10-year-old boy with autism, was arrested last week at a school in Florida, he kept repeating that he didn't know what was happening, as seen in shaky cellphone video taken by his mother.

"I don't know what's going on. I don't understand," he cried out. In the video, his hands are cuffed as two officers escort him to the back seat of a police car.

His mother, Luanne Haygood, followed behind them while recording the incident on her phone. In the video, John appears distraught, and yells some profanities.

Luanne is heard in the video speaking to the officers, "Excuse me, do you have any paperwork or anything you can say to me?"

John, a student at Okeechobee Achievement Academy in Okeechobee, Florida, was arrested at the school last week for feloy battery  against a teacher in an October incident, allegedly punching and kicking his teacher, which left scratches and marks, according to an incident report from the Okeechobee County Sheriff's Office (PDF).

The incident occurred after John was being disruptive in class, throwing paper balls around the classroom and hitting other students, the report said. His teacher asked him to go to time out. When John refused, the teacher attempted to remove him, and that's when John attacked, the report said.

The report also noted that John had allegedly made threats to kill the teacher in a previous incident. On November 1, the teacher requested to pursue criminal charges since John "had been given plenty of opportunities to change his behavior and has not," the report said.

Mississippi Medicaid Limbo

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities. 

Bracey Harris writes about Medicaid at The Clarion-Ledger:

[A]lmost two years after Mississippi enacted a mandate requiring insurers to cover a type of autism therapy known as applied behavior analysis, providers say the state’s largest insurer of children is not reimbursing services.

Two problems:

The first is a matter of timing.

Mississippi submitted an amended state plan to the Centers for Medicare and Medicaid Services last year. The document details the scope of behavioral therapy services that will be covered for eligible beneficiaries under the age of 21 diagnosed with autism. CMS works on a 90-day turnaround schedule, meaning if the plan is approved before the end of this current quarter, the new policy will go into effect on July 1.
...
“Bottom line: We’ve got a tight window to deliver services. Every minute that passes by. It’s a grain of sand you don’t get to pull back. (I’m hopeful) this moves forward so children can start receiving services," said Jim Moore, director of the state Autism Board, which is charged with licensing board-certified behavior analysts.

The second and perhaps more pressing issue for providers is the reimbursement rates proposed by the division. In public comments, providers protested the fee schedule. Most insurers stipulate that applied behavioral analysis therapy programs must be supervised and coordinated by a licensed behavior analyst in order to receive payment.

The billing guideline proposed by Medicaid would have paid a behavioral analyst with a master’s degree $30 an hour. In neighboring Louisiana, the rate is $72 per hour.

The Clock, the Calendar, and the Cliff

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

At Time, Katherine Osnos Sanford writes that the special education system is not enough for her daughter.

Whem the school day is over, there is another question: What now? Many schools provide afterschool-care for regularly developing students — everything from chess club to a quiet place to do homework— but, for special-ed kids, the school day ends at three o’clock. According to a 2014 study published in Pediatrics, a family with a child on the spectrum spends, on average, over $17,000 more a year on health and childcare costs than a family without one. To make matters worse, according to a 2012 study in the same journal, mothers of autistic children also earn, on average, 56% less than other mothers, because so much of their time is required at home. So, what if schools provided after-school care for special-needs students, as well? What if they provided opportunities to develop important life skills, with field trips to useful destinations, like the grocery store or the ATM? This kind of program would allow families to pay for their child to be in a safe and familiar place — and allow school districts to augment the salaries of support staff who choose to participate.

And this educational structure should continue well beyond the ages at which a regular-ed student graduates. For students on the autism spectrum, the need to learn more in order to support themselves does not end at the dawn of adulthood. In many cases, an autistic student will go from a school in which she is supported by a team of teachers and aides, in an environment that seeks to include her as much as possible with students in regular education, to a far more secluded and limited life. Kevin Murray, a founding board member of Autism Speaks, is the father of a 22-year-old son who recently aged out of school and entered the uncertain world of adult care. The change has been radical. As he compared to me the services that his son received when he was in school to his current situation, he asked, “When did my son become less valuable?”

Deborah Rudacille writes at Slate:

There are a number of pretty good studies that describe fairly well the difficulties that young adults with autism face, in terms of unemployment and underemployment, in terms of comorbid mental health issues, in terms of not getting the services they need,” says Julie Lounds Taylor, assistant professor of pediatrics at Vanderbilt University in Nashville.

So far, however, there’s been little research to determine what sort of support and services these young people need. Instead of getting extra help during these vulnerable years, they face a major impediment: a sudden drop-off in support at graduation, when federally mandated services abruptly end—a phenomenon that researchers call “the services cliff.”

...

Itineris [is] a community-based program created in 2009 by nine Baltimore families who realized that after high school graduation, there would be no specialized services available to help their children on the spectrum become more independent. In addition to providing job training, Itineris staff take the 70 or so young people in the program on outings to restaurants, amusement parks, movies, and bowling.

...

Researchers tend to focus on employment among young adults with autism for one simple reason. “We find that for many people, employment is not just about a paycheck. It’s about opportunities for social inclusion, meeting other people, for self-expression and identity formation,” says Paul Shattuck, director of the Life Course Outcomes Program at the A.J. Drexel Autism Institute.

But without the help of an organization like Itineris, finding a job is tough—and sticking with a job even tougher. Though about half of young adults on the spectrum work for pay at some point after high school, only 1 in 5 work full time, with average earnings of about $8 per hour. Their rates of employment are lower than those of people with language impairments, learning disability, or intellectual disability alone.

ASD Adults and Financial Skills

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

A release from the University of Missouri:

More than 3 million people in the United States are estimated to have an autism spectrum disorder diagnosis and annual diagnosis rates continue to rise. Researchers from the University of Missouri have found when teenagers and young adults with autism enter adulthood and age out of many of the services designed to help them, they often are anxious about how to handle new adult responsibilities such as paying bills and filing taxes. These findings highlight the importance of incorporating financial management into early education to empower young adults with autism.

Nancy Cheak-Zamora, assistant professor in the School of Health Professions, led a research team that conducted interviews with individuals with autism between 16 and 25 years old. Through the interviews, the researchers identified common themes regarding adulthood and financial skills.

“Most of the participants saw a definite association between adulthood and handling money,” Cheak-Zamora said. “Participants agreed that independence required managing finances and all expressed frustration in their own abilities when it came to knowing how to handle and use money. According to the participants, the lack of financial skills has serious consequences on their ability to assume adult responsibilities.”

This new research highlights the importance of implementing financial management programs early and tailoring them to the specific needs of people on the autism spectrum. Researchers suggest that financial management and literacy need to become an integral part of social services and education.

“Despite the importance of financial autonomy and the increased independence that comes from understanding money, financial management and decision-making often are seen as outside the purview of professionals working with young people with autism,” said Clark Peters, co-author of the study and associate professor in the MU School of Social Work. “Educational programs that include financial literacy in both schools and independent living programs could increase autonomy and quality of life for people with autism.”

Cheak-Zamora and Peters suggest that parents and caregivers can help by providing skills and encouragement. They say helping children with autism pay for items at a store and setting up bank accounts can provide the confidence needed to understand financial matters. They also suggest that financial institutions should play a role in helping customers with special needs, such as providing dedicated phone lines to assist consumers.

“Financial capabilities among youth with autism spectrum disorder,” recently was published in the Journal of Child and Family Studies. Michelle Teti, associate professor of health sciences, and Anna Maurer-Batjer, a graduate student in the School of Social Work also co-authored the study. Research was supported by the U.S. Army Medical Research Acquisition Activity and the Assistant Secretary of Defense for Health Affairs through the Autism Research Program. The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding agencies.

FDA Warns Against Autism Quackery

In The Politics of Autism, I discuss the role of the Food and Drug Administration in fighting autism quackery.

From FDA:

One thing that is important to know about autism up front: There is no cure for autism. So, products or treatments claiming to “cure” autism do not work as claimed. The same is true of many products claiming to “treat” autism or autism-related symptoms. Some may carry significant health risks.

The Food and Drug Administration (FDA) plays an important role in warning these companies against making improper claims about their products’ intended use as a treatment or cure for autism or autism-related symptoms.
...
FDA Cracks Down on False Claims

According to Commander Jason Humbert, M.H.S., R.N., a regulatory operations officer in the FDA’s Office of Regulatory Affairs, the agency has warned and/or taken action against a number of companies that have made improper claims about their products’ intended use as a treatment or cure for autism or autism-related symptoms. Some of these so-called therapies carry significant health risks and include:

• “Chelation Therapies.” These products claim to cleanse the body of toxic chemicals and heavy metals by binding to them and “removing” them from circulation. They come in a number of forms, including sprays, suppositories, capsules, liquid drops and clay baths. FDA-approved chelating agents are approved for specific uses that do not include the treatment or cure of autism, such as the treatment of lead poisoning and iron overload, and are available by prescription only. FDA-approved prescription chelation therapy products should only be used under professional supervision. Chelating important minerals needed by the body can lead to serious and life-threatening outcomes.
• Hyperbaric Oxygen Therapy. This involves breathing oxygen in a pressurized chamber and has been cleared by FDA only for certain medical uses, such as treating decompression sickness suffered by divers.
• Detoxifying Clay Baths. Added to bath water, these products claim to draw out chemical toxins, pollutants and heavy metals from the body. They are improperly advertised as offering “dramatic improvement” for autism symptoms.
• Various products, including raw camel milk and essential oils. These products have been marketed as a treatment for autism or autism-related symptoms, but have not been proven safe and effective for these advertised uses.

Humbert offers some quick tips to help you identify false or misleading claims.

• Be suspicious of products that claim to treat a wide range of diseases.
• Personal testimonials are no substitute for scientific evidence.
• Few diseases or conditions can be treated quickly, so be suspicious of any therapy claimed as a “quick fix.”
• So-called “miracle cures,” which claim scientific breakthroughs or contain secret ingredients, may be a hoax.

The bottom line is this—if it’s an unproven or little known treatment, talk to your health care professional before buying or using these products.

This article appears on the FDA’s Consumer Updates page, which features the latest on all FDA-regulated products.

Buck v. Bell

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

Ross Pomeroy writes at RealClearScience about the infamous case of Buck v. Bell:

By the 1920s, eugenics was a genuine movement. As author and pediatrician Paul Offit describes in his new book, Pandora's Lab, Hundreds of colleges taught courses on the subject. It appeared in the majority of high school biology textbooks. There were fairs, meetings, and advertisements. The nationwide campaign convinced citizens and legislatures – forty-one states eventually prohibited marriage by those deemed feeble-minded or insane, and a few states even instituted policies of forced sterilization.

It was Virginia's law on forced sterilization that eventually reached the Supreme Court. The case, Buck v. Bell, argued ninety years ago, pitted the Virginia State Colony for Epileptics and Feebleminded against one of its patients, Carrie Buck. The colony's superintendent, Dr. John Hendren Bell, wanted to sterilize Buck. His lawyers argued that Buck was a "genetic threat" to society. Buck's lawyer argued that she had a right to procreate which was being violated.

The Court sided 8 - 1 with the colony. The majority opinion, penned by the legendary justice Oliver Wendell Holmes, seems like it originated from a dystopian work of science fiction:

"We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, to prevent our being swamped with incompetence... The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes."

"Carrie Buck is a feeble-minded white woman. She is the daughter of a feeble-minded mother in the same institution, and the mother of an illegitimate feeble-minded child. It is better for all the world, if instead of waiting to execute degenerate offspring for crimes, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind... Three generations of imbeciles are enough."

Unfortunately, Holmes' opinion was very real and far-reaching. Not only did it result in the sterilization of Buck, it also led to the sterilization of as many as 70,000 people over the next fifty years. Equally clear evidence of the decision's warped sense of justice came during the Nuremburg Trials after World War II, when Nazi war criminals utilized it for their defense.

The Downside of Vouchers

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act. At The New York Times, Dana Goldstein reports on special education vouchers:

McKay [program in Florida] is the largest of 10 such disability scholarship programs across the country. It serves over 30,000 children who have special needs. At the Senate confirmation hearing for Betsy DeVos, President Trump’s education secretary, she cited research from the conservative Manhattan Institute, saying that “93 percent of the parents utilizing that voucher are very, very pleased with it.”

Legal experts say parents who use the vouchers are largely unaware that by participating in programs like McKay, they are waiving most of their children’s rights under IDEA, the landmark 1975 federal civil rights law. Depending on the voucher program, the rights being waived can include the right to a free education; the right to the same level of special-education services that a child would be eligible for in a public school; the right to a state-certified or college-educated teacher; and the right to a hearing to dispute disciplinary action against a child.

It’s not just Florida. Private school choice programs in Arizona, Colorado, Georgia, Oklahoma, Mississippi, Tennessee and Wisconsin also require parents to waive all or most IDEA rights. In several other states, the law is silent on the disability rights of voucher students.

... 

The state affidavit that parents sign in order to receive a McKay scholarship, for example, says nothing about forfeiting IDEA rights and services. It also does not explain that parents are responsible for any additional fees a private school may charge on top of a voucher, which can range from $5,000 to $23,000. The Florida Department of Education website provides other materials with more detail on the legal implications of participating in McKay, but the documents are difficult to find and decipher. District-level documents are often similarly opaque.

Insurance Reform in Alabama

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

Amy Yurkanin reports at AL.com that the insurance committee of the Alabama House has approved an autism insurance mandate.

The meeting room filled to capacity several minutes before the hearing began, forcing dozens of people wearing buttons in support of the bill, HB 284, into the hallway, where they listened through open doors 

Committee members made several changes to the bill. The measure now requires the Alabama Medicaid Agency to provide applied behavior therapy to children covered under the program for low-income families. The state is already under investigation by federal regulators for failing to provide the therapy, according to Rep. Jim Patterson, R-Meridianville, the sponsor of the bill. 

Two other amendments also imposed caps for coverage and premium increases. Insurance policies would be required to cover the costs of therapy up to $40,000 a year for children younger than 10, $30,000 for those between the ages of 10 and 13, $20,000 for those age 14 to 18 and $10,000 for people age 19 and old

California Kinder Vaccination Rate is Up

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

From the California Department of Public Health:

The California Department of Public Health (CDPH) today posted results for the annual immunization assessment of children attending kindergarten in California in the 2016-17 school year. The report found that vaccination rates among kindergartners are at their highest point since 2001.

Compared to 2015-16 results, the percentage of students attending kindergarten in 2016-17 who had received all required vaccines rose from 93 percent to 96 percent.

“I am encouraged to see that California parents are making sure their children get the vaccinations they need,” said CDPH Director and State Public Health Officer Dr. Karen Smith. “Many vaccine-preventable diseases, such as measles, can easily spread in school settings. Getting all recommended immunizations on time is one of the most important things parents can do to keep our children healthy and in school.”

Some factors contributing to the improvement in kindergarten vaccination rates may include:

• Efforts by CDPH, local health departments, schools and community organizations to support implementation of school immunization requirements.
• Increased public awareness about the importance of immunizations in recent years due to highly visible outbreaks.
• State audits of local schools in 2016 and 2017 to ensure they were complying with immunization laws.
• The impact of Senate Bill 277 (Pan and Allen, 2015) and Assembly Bill 2109 (Pan, 2012), which sought to improve vaccination rates in the state. Students entering school in 2016-17 are the first to be subject to SB 277, which ended personal beliefs exemptions for vaccination.

“I am pleased that this first year of implementation of SB 277 has resulted in the significant rise of the vaccination rate of this year’s Kindergarten class,” said Dr. Richard Pan, pediatrician and state senator representing the Sacramento region. “This success is a first step toward reducing the number of unimmunized people putting our families at-risk for preventable diseases, thereby restoring community immunity throughout our state in the coming years.”

“It is gratifying to see that in the course of just one school year, more children and the public at large are now more fully protected from preventable diseases,” said Sen. Ben Allen, D-Santa Monica. “I congratulate every local school district that has made public health a priority in their community.”

Despite statewide improvements in vaccination rates, schools and communities with low vaccination rates remain at risk for outbreaks. About 18 percent of California schools reported that fewer than 95 percent of their kindergarteners have had at least two doses of measles, mumps and rubella (MMR) vaccine. In addition, 1 percent of schools reported that fewer than half of their students to have had at least two doses of MMR.

Consistent, high immunizations rates are needed to prevent the spread of disease and protect the small number of people who cannot receive a vaccination for medical reasons.

CDPH continues to work with the California Department of Education, local health departments, health care providers and schools in California to work toward further increases in vaccination rates. The Department encourages parents to speak with their healthcare professionals to make sure children get their vaccinations on time.

Visit Shots for School for more information on immunizations for school children in California.

ABA Licensing in Texas

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

Sebastian Herrera reports at the Houston Chronicle on SB 589 and House Bill 26, which would require licensing of behavior analysts in Texas:

Applied behavior analysis (ABA) stakeholders and supporters in the state now are attempting to regulate the practice with two bills in the Legislature that would require behavior analysts to be licensed. Supporters say it is crucial not only to protect vulnerable people from untrained analysts, but also because it could affect medical insurance coverage.

Senate Bill 589, by Sen. Eddie Lucio Jr., D-Brownsville,is scheduled for a Senate committee hearing Tuesday. It faces an uncertain reception, though no public opposition has surfaced.

"Right now, there's just no way for the state to regulate the profession," said Dorothea Lerman, director of the Center for Autism and Developmental Disabilities at the University of Houston Clear Lake and president of the Texas Association for Behavior Analysis."(The bill) is to protect the consumer, and the other reason is to protect our profession as well."

The TxABA Public Policy Group has raised about $20,000 to pay lobbyist Courtney Hoffman to represent them at the Legislature, said Kate Johnson-Patagoc, director of specialized services at the Texana.

Herrera reports in a more recent article:

SB 589 supporters also say licensure could lead some insurers who don't cover ABA treatment to change their policies. The federal government requires licensure for Medicaid reimbursements, according to Sen. Kelly Hancock, R-North Richland Hills, the chair of the Senate Business and Commerce Committee, which heard the bill.

Joseph McCoy, a psychologist from the Rio Grande Valley, was the sole person to testify against the bill. While McCoy supports licensure for behavior analysts, he believes the measure should be regulated by the Texas Board of Examiners of Psychologists because ABA treatment has psychology roots.

The bill currently lists the Texas Department of Licensing and Regulation as the proposed license regulator after a committee substitute amended that part of the legislation. The bill's original version proposed the Texas Medical Board as the regulator.
House Bill 26, by Rep. Ron Simmons, R-Carrollton, would also require licensure for behavior analysts. The bill is pending in a House committee.

The state currently spends about $7 million annually on autism programs.

Senators said SB 589 would be heard again next Tuesday. A licensure bill passed the full House in the last legislative session before getting stuck in the Senate. Backers hope a similar result won't happen this time.

ABLE 2.0

The Politics of Autism includes a discussion of the ABLE Act.

From Rep. Cathy McMorris Rodgers:

Eastern Washington Congresswoman Cathy McMorris Rodgers (R-WA), along with Congressmen Pete Sessions (R-TX), Tony Cárdenas (D-CA), Chris Smith (R-NJ), and Jim Langevin (D-RI) today introduced a package of bills to enhance the Achieving a Better Life Experience (ABLE) Act of 2014. The package includes the ABLE to Work Act, the ABLE Financial Planning Act, and the ABLE Age Adjustment Act.

“A job is so much more than a paycheck. It’s what gives you purpose and dignity. It’s the opportunity for a better life, and that’s what we’re doing with ABLE 2.0, specifically the ABLE to Work Act,” said McMorris Rodgers, the bill’s lead. “Too often, people with disabilities live in poverty because the current system forces them to make a choice between disability benefits and work. This legislation empowers people with disabilities to save the money they earn from work while remaining eligible for the critical disability safety net. At the end of the day, this is about empowering people with disabilities, like my son Cole, to live their fullest, independent life.”

...

NOTE: The ABLE 2.0 package includes three bills. The ABLE to Work Act allows individuals and families to save more money — up to the federal poverty level — in their accounts if the beneficiary works and earns income. The ABLE Financial Planning Act allows families to roll over savings in a 529 college savings plan into an ABLE account and prevents these funds from being trapped or fined if a child is born with a disability or acquires one later in life. The ABLE Age Adjustment Act raises the age limit for ABLE accounts from 26 to 46, helping people whose disability or disease develops later in life.

For more information about the legislation, visit www.mcmorris.house.gov/able.

Trump, InfoWars, and the Vaccine Theory

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on science and disability issues more generally.

Autism rates through the roof--why doesn't the Obama administration do something about doctor-inflicted autism. We lose nothing to try.

— Donald J. Trump (@realDonaldTrump) October 22, 2012

Massive combined inoculations to small children is the cause for big increase in autism....

— Donald J. Trump (@realDonaldTrump) August 23, 2012

At Vox, Julia Belluz writes about Alex Jones and the conspiracy-theory site InfoWars -- a Trump favorite.

Jones has said Oprah Winfrey is trying to reduce the African population by half, that Sesame Street’s new autistic Muppet was designed to normalize an increasingly common disease that’s caused by vaccines, and that the Atlantic and other lefty periodicals are hinting at an imminent decapitation of President Trump.

In this world, Andrew Wakefield, the discredited doctor who falsified data to suggest vaccines are linked to autism, is a “pioneer” and “trailblazer” who just wants to help keep people healthy. By contrast, Bill Gates is running a mass eugenics effort through his charitable work, and the HIV epidemic was actually created by the American government(which has incidentally been part of a Russian disinformation campaign about the US government).

In Rochester, MS, Brett Boese writes at The Post-Bulletin:

Medical personnel at Mayo Clinic, Rochester Epidemiology Project, Minnesota Department of Health and elsewhere routinely dismiss the alleged connection between vaccines and autism as — to use today's popular vernacular — "fake news." The 1998 study that first raised that alleged connection has been formally retracted, and its author, London's Andrew Wakefield, lost his medical license in 2010.

Newsweek says Wakefield remains "revered and reviled" by the two factions, but his claims have been so widely debunked — including by a 2005 REP study completed in Rochester — that Mayo Clinic Dr. Robert Jacobson says "it's strange that people are still questioning the safety" of vaccines.

Wakefield's fraudulent report remains a primary influencer nearly two decades later, and measles has become a problem again — 667 cases in 2014 — after the CDC declared it was eradicated in the U.S. in 2000.

"Now with a populist president who has met with some of the most rabid anti-vaccinists, that has a lot of people on edge," Jacobson said.

Autism and Housing

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

Jamie Stengle writes at AP about autism and housing.  She describes a Pittsburgh-area complex that serves adults with autism.

The complex, called the Dave Wright Apartments, opened in December and is among innovative housing developments popping up across the U.S. to serve those who were diagnosed with autism as children amid increased awareness about the disorder and changes in how it's defined. The developments are often spearheaded by parents who see their adult children's desire for independence and wonder who will care for them in the future.

According to the A.J. Drexel Autism Institute, 87 percent of adults with autism live with their parents at some point between high school and their early 20s — a far higher percentage than the general population.

"They want to live independently and they want to work. They want to be involved. Right now there are just not enough opportunities for them to do those things," said Debra Caudy, who is working with her husband on a housing development near Dallas inspired by their 19-year-old autistic son, Jon.

...
Elliot Frank, president of the nonprofit Autism Housing Development Corporation of Pittsburgh, which was behind the Dave Wright Apartments where Masha Gregory lives, has watched as a community has formed there. Frank said he came up with the concept after hearing a businessman talk about employing autistic adults and wondering where they would live.

"The whole concept of what we call disability housing, it's not what we used to think about," Frank said.

On September 10, 2016, dozens of autistic people, individuals, family members, service providers, officials from state human services and housing agencies, finance professionals, developers, and designers met to address the challenge of autism housing in Massachusetts. This project was joint effort of Autism Housing Pathways, The Arc of Massachusetts, and Advocates for Autism of Massachusetts.  From the just-released white paper:

• There is a small core of housing models that could be collectively adapted to the needs of a wide variety of residents:
• Individual apartments and condo
• Shared living
• Inclusive small footprint units (such as micro-units and single room occupancy) 
• Inclusive co-housing
• Transitional housing
• There is still a role for congregate housing for some individuals with extreme maladaptive behaviors, but even this model can be re-imagined to create greater self-direction and privacy.
• Drop-in services for cueing are needed.
•  Affordability, the shortage of vouchers, staff training and quality, and transportation are systemic problems.  Beyond these, most barriers to housing are more individualized.
• Incorporating Braddock and Rowell’s “Six Most Common Home Modifications”, plus soundproofing, into new housing for people with autism, and into a percentage of new housing generally, would meet the needs of a majority of people with autism, while more significant modifications would be needed for about a quarter of autistics.
• Technology can improve people’s ability to live independently, but they will need options to pay for assessments and the technology (including apps), whether through MassHealth, DDS, or other insurance.
• Good communication, education about housing options, and a person-centered holistic approach that starts early is conducive to a good outcome. This approach should be embedded into a beefed up transition process that incorporates applying for housing vouchers and improving independent living skills.
• The housing sector needs to better understand autism. The housing committee of the Autism Commission should consider expanding its membership to include more representation from the housing sector. Training for housing professionals in autism should be explored.
• Data collection should be undertaken to answer questions about overall housing demand, demand for the models discussed, and homelessness in the autism community. These data can be the basis for establishing housing production targets

Autistic Adolescents and Driver's Licenses

In The Politics of Autism, I discuss interactions between police and autistic people.  Sometimes they occur on the road.  A number of ASD people drive cars.

Allison E. Curry and colleagues have an article at Autism titled "Longitudinal study of driver licensing rates among adolescents and young adults with autism spectrum disorder."  The abstract:

Driving may increase mobility and independence for adolescents with autism without intellectual disability (autism spectrum disorder); however, little is known about rates of licensure. To compare the proportion of adolescents with and without autism spectrum disorder who acquire a learner’s permit and driver’s license, as well as the rate at which they progress through the licensing system, we conducted a retrospective cohort study of 52,172 New Jersey residents born in the years 1987–1995 who were patients of the Children’s Hospital of Philadelphia healthcare network ⩾12 years of age; 609 (1.2%) had an autism spectrum disorder diagnosis. Electronic health records were linked to New Jersey’s driver licensing database (2004–2012). Kaplan–Meier curves and log-binomial regression models were used to determine the age at and rate of licensure, and estimate adjusted risk ratios. One in three adolescents with autism spectrum disorder acquired a driver’s license versus 83.5% for other adolescents and at a median of 9.2 months later. The vast majority (89.7%) of those with autism spectrum disorder who acquired a permit and were fully eligible to get licensed acquired a license within 2 years. Results indicated that a substantial proportion of adolescents with autism spectrum disorder do get licensed and that license-related decisions are primarily made prior to acquisition of a permit instead of during the learning-to-drive process.