Vaccines, Measles, and Politics

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong. A leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

He is now running for president as an independent.  At first, Trumpists encouraged his political ambitions in hopes that the Kennedy name would draw votes from Biden.  But now it appears that Kennedy may instead be drawing votes from Trump, who also has a long history as an antivaxxer.

Charles Sykes at MSNBC:

Amid former President Donald Trump’s fire hose of fabulism, feculence and felonies, it can be hard to keep track of his many concerning 2025 pledges. One nugget that may have escaped wider notice is his declaration, made in speech after campaign speech, that he will “not give one penny to any school that has a vaccine mandate.” As Steve Benen notes, “Trump’s rhetoric was neither accidental nor new.” But we also can’t ignore it.

We are occasionally assured that we should take Trump seriously, but not literally. Yet Trump seems committed to this vaccine mandate threat. As Benen notes, the former president has repeated his anti-vax vow “word for word, for at least a year.” And, lest there be any confusion, he occasionally emphasizes that his pledge would apply to every public school “from kindergarten through college.”

Nor does he specifically limit his pledge to Covid-era vaccines.

...

This may just be the tip of a new reactionary anti-vax push. Legislation has been proposed in state legislatures across the country that could limit the use of vaccines for measles, polio and meningitis, often in the name of parental or religious rights. A bill pending in Louisiana would require schools to proactively inform parents of their rights to opt out of the mandates. “We’re against the government telling us what to do with our own bodies,” the legislation’s author, GOP Rep. Kathy Edmonston, insists.

The Republican Legislature in West Virginia passed a bill that would have exempted students attending private, parochial and virtual schools from the mandates. (It was vetoed by GOP Gov. Jim Justice.) Mississippi has seen a dramatic spike in the number of students claiming religious exemptions. In Wisconsin, Democratic Gov. Tony Evers vetoed legislation that would have required public universities and colleges to provide.

AP reports on the West Virginia primary:

In the state’s eastern panhandle, U.S. Army Special Forces Green Beret veteran Tom Willis defeated Republican Senate President Craig Blair, who has helmed the chamber since 2021. And State Health and Human Resources Chair Sen. Mike Maroney was defeated by Chris Rose, a utility company electrician and former coal miner.

Maroney’s loss came after he publicly advocated against a bill pushed by the Republican caucus that would have allowed some students who don’t attend traditional public institutions or participate in group extracurriculars like sports to be exempt from vaccinations typically required for children starting day care or school.

West Virginia is only one of a handful of states in the U.S. that offers only medical exemptions to vaccine requirements. Maroney, a radiologist from Marshall County, called the bill “an embarrassment” on the Senate floor and said he believed lawmakers were harming the state.

In Maroney’s race, Rose had the backing of West Virginians for Health Freedom, a group that advocates against vaccine mandates.

During the debate about this year’s vaccine bill, which was ultimately vetoed by Republican Gov. Jim Justice, Maroney said: “I took an oath to do no harm. There’s zero chance I can vote for this bill.”

 

Ontario has its first death from measles in over a decade. A small child who was unvaccinated. https://t.co/HyhF0gqN5y

As a reminder, measles is also spreading in the U.S. It's a nasty, painful disease, that can end in lifelong disability or death. But anti-vaccine activists… https://t.co/fODsq2rvAU

— Brandy Zadrozny (@BrandyZadrozny) May 17, 2024

Autism by the Numbers: Age of First Intervention

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

From Autism Speaks:

Autism by the Numbers, created by Autism Speaks in collaboration with the National Autism Data Center at Drexel University, has the potential to transform the way we understand and meet the needs of autistic individuals and their families. This central, authoritative hub of reliable data about people with autism will allow insight into the strengths and weaknesses of systems that exist to improve health, education, employment and advocacy. The Autism by the Numbers Annual Report and Dashboard can also be used to support the creation of precision public health programs specific to the diverse needs of the autistic community.

 Autism by the Numbers data also show variation between states in access to diagnosis and early  intervention. 

• Average age of first intervention ranges from 3.7 to 7.2 years of age across states.
• Average age of diagnosis ranges from 3.6 years to 7.6 years across states.
• Delaware and Kentucky have the youngest age of first intervention, at 3.7 years in each state.
• Oklahoma (5.3 years), Mississippi (5.5 years), Ohio (5.6 years), North Dakota (6.0 years) and West Virginia (7.2 years) show an average age of intervention above the national average, indicating a possible need to improve screening processes or access to intervention services.

More in-depth research is needed to understand why some states are able to effectively screen for ASD and provide early intervention services, while others experience significant delays in care.

Bills on Police Training

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. 

Tori Yorgey at WSAZ-TV:

Several bills got the approval signature of West Virginia Gov. Jim Justice during a virtual ceremony Wednesday. One of them will require training for certain officers who are responding to those with disabilities.

“I just thought it was a step in the right direction with people with disabilities, specifically autism, that can help the communities and families have a little bit of relief as far as what might happen if they get into an emergency situation or they need assistance with their loved one,” Phenia Simmons, who has two sons that are on the autistic spectrum said.

The bill requires law enforcement and correctional officers to be trained on the best ways to interact with those with autism spectrum disorders.

...

The West Virginia Autism Training Center Executive Director, Dr. Marc Ellison was a strong advocate for the passage of the bill.

“Senate Bill 634 is a really significant step in helping police officers and the community in general understand autism better and hopefully will prevent some really poor outcomes,” Dr. Ellison, Executive Director of Marshall University’s Autism Training Center said. “I’m aware of only two states that require autism-specific training for police officers. So once again, West Virginia, at least in the world of autism support, is kind of a pioneer in leading the way.”

“Thank you again, Governor, for your support in improving life quality for those in West Virginia living on the autism spectrum,” Dr. Ellison said.

The training and guidelines will be developed and conducted at the West Virginia Autism Training Center at Marshall University.

Charles Winokoor at The Herald News (Fall River, MA):

State Rep. Alan Silvia wants police officers as well as teacher aides in elementary and secondary schools to be better equipped in dealing with autistic children and adults.

“It’s very important that paraprofessionals are trained to deal with autistic kids,” Silvia said referring to certified teacher aides.

The 7th Bristol state rep also says police departments everywhere owe it to themselves and the public to require that academy recruits be given in-service training in how to interact with people diagnosed as being on the autism spectrum.

“Police lack mental health disorders training,” said Silvia, who was a Fall River cop for 22 years and a major crimes detective before being forced to retire as result of an on-duty injury.

Silvia in February introduced two bills relative to individuals with autism.

One bill would allow autistic children of parents living at home to remain on their parents’ medical insurance plan past the age of 26.

Silvia says the bill, which has 17 co-sponsors including local state Reps. Carole Fiola and Patricia Haddad, to some extent is pre-emptive in nature.

“The insurance companies so far have not declined coverage, but it’s not the law,” he said.

The original version of the other bill filed by Silvia and 4th Bristol District Rep. Steven Howitt includes a requirement for autism-related training for law enforcement agencies and teacher aides.

It also calls for the installation of video cameras in classrooms and school “quiet rooms” where children with autism spectrum disabilities are taught

Cultural Sensitivity and Appalachia

In The Politics of Autism, I discuss cultural differences in the ways families deal with autism and how service providers try to meet their needs.

At The Journal of Appalachian Health, and Angela Scarpa and colleagues have an article titled "Access to Autism Spectrum Disorder Services for Rural Appalachian Citizens.  Not surprisingly, they find problems of availability and affordability. Another problem, however, has gotten less attention: cultural sensitivity to rural people.

When considering increasing the workforce of mental health providers in rural Appalachian regions, policy makers and educators may need to consider the addition of multicultural training that is specific and sensitive to the history and needs of Appalachian residents. It has been suggested, for example, that providers need to spend more time building rapport with clients by engaging in chit-chat and pleasantries (i.e., “front porch talk”), and getting to know specific terms that are used in the region (e.g., “having nerves” to mean experiencing anxiety).Similarly, providers in our sample suggested the need to establish trust and to respect client autonomy by becoming part of the community, avoiding jargon, and treating clients without condescension. Diversity training that includes such information about cultural attitudes may help overcome some initial mistrust of professionals and facilitate better therapeutic relationships. Interestingly, the caregivers themselves did not report these cultural barriers, noting only childcare as the primary barrier to participating in treatment. It is not clear if the lack of caregiver report was due to the small sample size, or if there is a real discrepancy in how families versus providers view barriers to seeking treatment.

Loophole in CA Vaccine Mandate

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

California has not punished any doctors for writing needless exemptions from the vaccination requirement, writes Soumya Karlamangla at The Los Angeles Times

Public health advocates are still concerned that doctors are writing improper exemptions to get kids out of vaccines. The number of children with medical exemptions tripled last year, and dozens of complaints against physicians have been filed with the Medical Board of California.

But the way California law addresses medical exemptions has created a challenge for officials, experts say. It leaves the decision of whether a child should be allowed to skip vaccines fully up to the doctor.

Some websites aimed at parents worried about vaccines suggest that physicians could write exemptions for children if they have a family history of asthma, diabetes, eczema or ADHD.

“Is it an abuse? Of course it’s an abuse,” said UC Hastings law professor Dorit Reiss. “The law left discretion to the doctors and of course that means doctors can abuse that discretion.”

...
In West Virginia, one of the other two states that banned personal belief exemptions, state officials have to sign off on every medical exemption form. The proportion of children in West Virginia with medical exemptions is four times smaller than in California.

Health Insurance and West Virginia

The Politics of Autism includes an extensive discussion of insurance issues, including the impact of the Affordable Care Act.

The Affordable Care Act has had major consequences for autistic people in West Virginia. Kathy Shapell, president of the Mountaineer Autism Project, writes at The Charleston Gazette-Mail:

First and most important, this coverage provides evidence-based treatment that works. The cost of lifelong care for individuals with autism can be reduced by two-thirds with early diagnosis and treatment, according to the Autism Society of America.

With the ACA, our state is saving taxpayers’ millions of dollars in lifelong care by giving them access to early, effective treatment. In many cases, a child will ultimately be able to attend school in a regular classroom with his or her peers and go on to lead a productive life.

Second, there’s the economic impact from the increase in therapists. The ACA has helped create hundreds of new jobs around autism therapy. Repealing the ACA could endanger those jobs.

Third, access to evidence-based autism treatment is preventing young families from leaving West Virginia. With our state steadily losing population, we need to do everything we can to encourage young families to stay.

Given the obvious benefits of the ACA — to families, to children and to West Virginia — it makes no sense to repeal it without a replacement that offers the same or better coverage. The American Health Care Act (AHCA) passed by the House of Representatives on May 4, is not the answer.

Vax Requirements Prevent Measles

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

At EdSource, Jane Meredith Adams reports that Mississippi has not had a case of measles since 1992, West Virginia since 2009. Now California joins them as the third state with strict vaccination school entrance rules. 

“It’s a good club to be in,” said Rahul Gupta, state health officer in West Virginia, who was effusive in welcoming California – home to more than eight times the number of children under the age of 18 as Mississippi and West Virginia combined – as a public health leader in school vaccinations, a role that the two Southern states have played for decades. “What we are seeing in West Virginia is a significant decline in vaccine-preventable diseases,” he said. “We expect the same in California.”

“We haven’t had a measles case in a schoolchild in decades,” said Thomas Dobbs, state epidemiologist in Mississippi, which has the highest school vaccination rate in the nation for measles, mumps and rubella with 99.7 percent of students receiving the immunization.
...
West Virginia instituted its vaccination requirements in 1987, has been strengthening them ever since and has never had a religious or personal belief exemption. Mississippi set its vaccination requirements in 1972, never had a personal belief exemption and ended its religious exemption in 1979, when the state Supreme Court ruled against such exemptions.

But in the ensuing decades, the fraudulent paper on the possible link between vaccinations and autism by Andrew Wakefield, a British doctor who was stripped of his medical license by a government review board, has sowed fear in parents and wreaked havoc on vaccination rates in Europe and, to a lesser extent, in the U.S. Both Gupta and Dobbs noted that it is far easier never to have had exemptions to vaccination requirements, or to have removed them decades ago, than to remove them in 2015 as California did.

Waiting in West Virginia

In The Politics of Autism, I discuss state Medicaid services for people with intellectual and developmental disabilities.

Kara Leigh Lofton writes at West Virginia Public Broadcasting that the state has no mechanism to track prevalence and that its services are poor.

“Less than 2 percent of any children with autism receive any evidenced-based treatment. So we know that the ability to give these kids the best outcome is really limited by the lack of services,” says Susannah Poe, director of the intensive Autism Delivery Clinic at West Virginia University.

Poe says that 2 percent is an estimate the non-profit Mountaineer Autism Project came up with after a 2010 survey of West Virginia Applied Behavior Analysis practitioners like herself about 5 years ago. To be clear, many practitioners think that Applied Behavior Analysis - ABA for short - is the best method for treating autism, if not the only one. So the 2 percent is only referring to kids receiving ABA therapy.
...
No ABA therapists in the state are currently taking Medicaid or have been able to successfully bill Medicaid. So when [autism dad] Tom [Riser] changed jobs and the family lost private insurance, they also lost the ABA therapy.

Jill McLaury is founder of the ABA facility Bright Futures in Hurricane. Though the number of board certified ABA practitioners has more than doubled in West Virginia in the last five years, McLaury says there are still not nearly enough to cover the need. Also, while federal legislation requires Medicaid to cover ABA services, there is enough red tape that most clinics like hers don’t bother trying.

“To do Medicaid I would have to be a licensed behavioral health facility and right now I’ve got a waiting list of over 50 families who are private insurance that I’m not able to serve,” she says. “So from a business perspective for me to then have to do a $1,500 application fee, to have a lot more scrutiny over the services – it doesn’t make sense when I’m not even able to provide services to the clients who already have funding.”

Housing Discrimination

Autism Speaks reports that a federal appeals court has upheld a HUD case against a West Virginia landlord.

The case involved a Charleston, WV landlord who imposed a series of conditions on a prospective tenant, Delores Walker, after she said her 48-year-old brother with "severe autism" would share the apartment. The landlord demanded that Walker obtain a note from her brother's doctor stating that he would not pose a liability threat, obtain a renter’s insurance policy with $1 million in liability coverage, and assume responsibility for any damage Walker's brother might cause to the property.

The landlord, Michael Corey, told Walker he was imposing the conditions based on his prior observations of “children with autism . . . flailing their arms and hollering and screaming in outrage.”

Walker elected not to pursue the rental, but HUD took up the case, arguing Corey had violated the Fair Housing Act by discriminating on the basis of disability in his offer of the apartment. An administrative law judge found for Corey, but HUD reversed the judge's recommendations and imposed fines on Corey.

Corey then appealed to the U.S. Fourth Circuit Court of Appeals. The three-judge federal appeals panel upheld HUD's actions and further increased the fines.

From the opinion: 

Section 3604(c) of the FHA [Fair Housing Act] prohibits oral or written statements with respect to the rental of a dwelling that indicate a “preference, limitation, or discrimination” based on certain protected statuses, including disability....

Corey does not deny telling Ms. Walker that he intended to impose special conditions on the Walkers’ prospective tenancy, but disagrees that he violated § 3604(c). He argues that he imposed the conditions only after Ms. Walker’s “voluntary and unsolicited statement that her brother suffers from ‘severe autism and mental retardation.’” Pet’r’s Br. 20. Corey also notes that he never indicated a flat refusal to rent to the Walkers, “only that . . . risk insurance maybe [sic] required.” Id. at 21.

Corey’s arguments are unavailing. For one, the fact that Ms. Walker disclosed her brother’s disability does not excuse Corey’s discriminatory responsive statements. Nor does it matter that Corey did not refuse to rent to the Walkers; the statute simply prohibits statements to renters that indicate a limitation based on disability, and Corey admits to making such statements. This ends the inquiry, as substantial evidence supports the Secretary’s determination.

...
 Finally, we affirm the Secretary’s conclusion that the § 3604(f)(9) “direct threat” exception does not apply. Corey makes no showing that his discriminatory conduct was supported by any objective evidence that Mr. Walker posed a direct threat to persons or property, as is required to trigger the exception. See H.R. Rep. No. 711, at 30 (1988), reprinted in 1988 U.S.C.C.A.N. 2173, 2191. And even if Corey’s request for a meeting with Mr. Walker and a doctor’s note was, as he maintains, an attempt to obtain such objective evidence, Corey cannot justify the other discriminatory conditions he sought to impose, based as they were on unsubstantiated stereotypes about autistic people in general.

The Benefits of Treatment

In Morgantown, West Virginia, WBOY-TV concludes its series on autism in West Virginia:

This week, we've seen the potential for autism treatment to help children in our state and the problems many still have accessing it. A parent-training program could help fill some of the gaps until a more permanent is available for families.

Twins Tristan and Autumn Hinebaugh receive treatment at West Virginia University's Center for Excellence in Disabilities, and their family was part of a pilot program to take some of the treatment home.

The Parent Implemented Training for Autism through Telemedicine (PITA-T) program is funded by a five year grant to expand professional autism treatment to remote or rural areas.
...
Dr. Susannah Poe, the director of the autism clinic, hopes lawmakers will take up the case for more coverage so no child is denied the same results.

"We're finding that it doesn't cost nearly as much as people think it does, and the benefits are just priceless," she said. "There's no way to replace the value of a Tristan or an Autumn who become typically developing kids and end up as productive members of society."

WBOY.com: Clarksburg, Morgantown: News, Sports, Weather

TV Reports on Autism in West Virginia

WBOY has a series of reports on autism in West Virginia, a year after the state enacted an insurance mandate.

Part One:

There have been significant strides in autism treatment in West Virginia over the last year, but there is a long road ahead for autistic children and the services needed to treat them.

Gov. Earl Ray Tomblin signed West Virginia's Autism Insurance Reform Law(HB 2693) April 2, 2012 at West Virginia University's Center for Excellence in Disabilities. It has a small Intensive Autism Service Delivery Clinic, which serves five children.

Tristan and Autumn Hinebaugh are twins who receive hours of one on one instruction at the clinic.

...
The law provides up to $30,000 a year for necessary treatment of children for up to three years. After that, the benefit reduces to $2,000 a year until they are 18 years old. The child must be diagnosed before they turn 8 years old.

There are gaps in the coverage, though. Only businesses with more than 25 employees are compelled to offer the coverage, excluding self-insured companies. That means only 23 percent of children in West Virginia are covered by the new law.

That leaves almost 75 percent without access to the treatment Tristan and Autumn receive, or their results.

Part Two:

We have a waiting list that we've quit taking names for because the children age out," said Dr. Susannah Poe, the director of the clinic. "They're 6 and 7 before we even have an opportunity to bring them in and it breaks our hearts."

If it weren't for the clinic, the Hinebaughs couldn't afford the care they receive. Tina said her employer is self-insured and so is not a part of the autism law. That means Tristan and Autumn are not covered.

Dr. Poe estimates that more than 75 percent of West Virginia children are in the same situation, blocked from funding for this type of treatment and its results.

"There has not been one child who has not made remarkable, affirming, progress," Dr. Poe said of the treatment at the clinic.

Of the estimated 23 percent of children who are covered, they still face difficulties gaining access to treatment. Dr. Poe said there are only 40 Board Certified Behavior Analysts (BCBA), like Emily Morris, in the entire state.

Part Three 

At West Virginia University's Center for Excellence in Disabilities, it's not hard to find students or volunteers willing to work with autistic children, like Tristan and Autumn Hinebaugh.

"To the point where they come in as students, and then they stay another year," said Dr. Susannah Poe, the director of the autism clinic. "Once you do this work, it's hard to walk away from it. There's not too much that's more rewarding."

The students, volunteers, and basically anyone who works with the children light up whenever they see or talk about them.

"They are extremely fun, wonderful kids," mom Tina Hinebaugh said. "They're a child first. They just happen to be autistic."

The clinic is a training ground for WVU's applied behavioral analysis program, but there hasn't been a market for their skills until now.

"We don't tend to retain a lot of the students who graduate from our university because they can't get jobs here," said Emily Harris, a Board Certified Behavioral Analyst (BCBA) and WVU graduate.

Autism Registry: Implementation Problems

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

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

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

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

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

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

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

Insurance, Regulation, and Behavior Analysts

In West Virginia, WHTC reports:

Although the state has seen an increase in registered ABA specialists since legislation passed that helps pay for children’s treatment, across the state there is a shortage. 

According to Bright Future’s records there are only 14 practicing applied behavioral analysts in the state. The number of children diagnosed in West Virginia and across the country is rising.

According to the U.S. Centers for Disease Control and Prevention about one in 88 children are diagnosed to be on the autism spectrum, ten times the amount from forty years ago.

In Massachusetts, Governor Deval Patrick recently signed legislation on licensure. The Lowell Sun reports:

 LICENSE AND REGULATE BEHAVIOR ANALYSTS (S 2379): Establishes a state board to test, license and regulate the state's growing number of mental-health professionals known as behavior analysts. The measure also sets educational requirements that an applicant must fulfill to qualify for a license. Behavior analysis ranges from treatment of individuals with autism and developmental disabilities to behavioral coaching and behavioral psychotherapy.

According to the Behavior Analyst Certification Board, behavior analysts "help build the skills and achievements of children in school settings; enhance the development, abilities and choices of children and adults with different kinds of disabilities; and augment the performance and satisfaction of employees in organizations and businesses."

Another Walker for Autism

An earlier post described the long-distance walk of Troy Blevins, who made his trek to raise autism awareness.  As WDTV reports, William Cefalo of Brooklyn is doing something similar:

Self-Insurance Is Exempt from State Autism Mandates

In Morgantown, WV, the Dominion-Post reports on a mandate loophole that leads to inequality:

While the new autism insurance law took effect in June, many employees and their families still aren't covered -- including those at WVU Hospitals (WVUH).

"Since WVU Healthcare's WVU Hospitals is a private employer, our health insurance plan is selfinsured and we are exempt from the autism legislation," said Charlotte Bennett, vice president of Human Resources for WVU Healthcare.

This means that nurses and other hospital staff aren't covered. But doctors are -- they work for WVU, a public university, and are insured by the state Public Employees Insurance Agency.

The self-insured loophole is the result of ERISA, which preempts state regulation of self-insured plans.

The US Department of Labor reports:

The Form 5500 data show that slightly more than 50,000 health plans filed a Form 5500 for 2009, an increase of almost 7 percent from the approximately 47,000 health plans that filed a Form 5500 for 2008.4 Of health plans filing a 2009 Form 5500, about 14,800 were self-insured and approximately 6,300 mixed self-insurance with insurance (“mixed-insured”). Self-insured plans covered approximately 24 million participants in 2009 and held assets totaling about $38 billion. In 2009 there were nearly 26 million participants covered by mixed-insured group health plans; these mixed-insured group health plans held more than $81 billion in assets. The table below summarizes aggregate statistics for self-insured and mixed-insured health plans filing a Form 5500 for 2008 and for 2009.

West Virginia and BACB

Previous posts described the attempt by West Virginia psychologists to claim jurisdiction over behavior analysts.  AP reports:

West Virginia does not appear to need its own regulatory board to oversee specialists who treat children with autism, given current national standards, a Tuesday report presented to lawmakers concluded.

The legislative audit found that the national Behavior Analyst Certification Board "provides adequate and sufficient protection to the public."

The findings arrive after the West Virginia Board of Examiners of Psychologists sought to claim jurisdiction over behavior analysts last year. The board dropped that attempt following a lawsuit and an outcry among parents of children diagnosed with these neurological conditions.

These specialists provide applied behavioral analysis, a treatment considered crucial by experts for many children with an autism spectrum disorder. These conditions are marked by problems with communication, behavior and social skills. The range includes a severe form called autistic disorder and the much milder Asperger's syndrome. Tuesday's report said the number of West Virginia schoolchildren diagnosed within the spectrum increased to 1,474 during the just-completed school year from 372 during 2001-2002.

"It is a distinct profession with distinct training that pulls from many difference degree programs in order for a certification to be specialized," Susannah Poe, the state's only behavior analysts who is also a licensed psychologist, told the House-Senate committees that received the report.
...
Welcoming the audit's conclusion, Poe blasted the psychology board for trying to force behavior analysis to work under the paid supervision of licensed psychologists.

"This current board of examiners filed an unprecedented and unnecessary emergency order that immediately restricted our professionals from engaging in the work that they had performed without complaint, without oversight or without any interest from the board," Poe said.

Michigan Mandate and Jobs for Behavior Analysts

An earlier post noted that the West Virginia mandate might enable the state to keep behavior analysts who received training in its institutions.  The same is true of Michigan.  Crain's Detroit Business reports:

With 15,400 school-age children and an additional 4,500 ages 2-5 diagnosed with autism, Michigan needs up to 600 more licensed psychologists who also are board-certified behavior analysts and as many as 7,000 licensed therapists to provide autism treatment, said Colleen Allen, executive director of the Autism Alliance of Michigan in Detroit.

...

"There will be some frustration in the beginning from parents because there are not enough qualified therapists in Michigan," said Dave Meador, one of the leading supporters of autism insurance reform and a member of the Autism Alliance.

"Our intention is to help organizations run job fairs to attract (licensed psychologists) back to Michigan," said Meador, who is also CFO of DTE Energy Co. in Detroit. "We have good behavioral colleges, but many graduates leave the state because there is no insurance for autism. This (law) will be a job creation mechanism." [emphasis added]

In Michigan, there are only 118 board-certified behavior analysts, and fewer who specialize in autism, compared with 2,000 in Florida. The Sunshine State is one of 30 that, like Michigan, now mandates autism insurance coverage, said James Todd, a psychology professor at Eastern Michigan University in Ypsilanti

MLive reports:

When passing the bill, State Rep. Lisa Brown, D-West Bloomfield, urged members to note the loss of talent Michigan was facing without the bills.

“I think most people know at least one person who has a family member with a child diagnosed with autism,” she saidwhen the legislation was approved on March 29. “We’ve heard from the schools. They graduate these wonderful, educated, ready-to-go-to-work kids and they have to move out of state because the jobs aren’t here because it’s not covered by insurance.”

Department of Psychology Professor and Chair Wayne Fuqua said he looks forward to seeing less than 90 percent of his behavior analysis graduate students leave the state.

He says he hopes the new legislation translates into WMU ramping up training capabilities, especially once the Great Lakes Center for Autism Treatment and Research center is completed in July. Residential Opportunities, Inc., and Western Michigan University began a $1.7-million renovation project on Portage Road for a new center for autism treatment to serve the 500 children with autism and their families in Kalamazoo County in January.

Insurance Legislation

In Alabama, The Birmingham News reports on legislative action Tuesday:

Senators voted 32-0 for a substitute bill that directs insurance companies to offer plans that include coverage for autism treatment. Businesses could choose to offer the coverage as part of their insurance options for employees, or parents could pick it up as a rider, said sponsor Sen. Cam Ward, R-Alabaster.

Advocates originally were pushing a bill that would have mandated the coverage.

"I think it's a fair compromise. Is that everything we want? No," said sponsor Sen. Cam Ward, R-Alabaster. However, he said, "This provides more coverage than the autism community has ever seen."

In Alaska, AP reports:

Rep. Wes Keller, chairman of the House Health and Social Services Committee, said Wednesday that a bill requiring health insurance companies to provide coverage of top-notch treatment for autism spectrum disorders is unlikely to move through his committee this session.

At a hearing Tuesday, the back rows of the room were filled with the usual legislative staffers, but a crowd of activists, parents of kids affected by autism and a handful of children were also in attendance as part of an impassioned plea for the passage of SB74.

"This job is a heartbreaker," Keller said in an interview with The Associated Press. "With all that passion and feeling, it's easy to do something that's not effective, but this is a bad policy."

...

Some insurance companies voiced opposition of the measure, and Keller sympathizes with their position.

In West Virginia, WVNS-TV reports:

West Virginia University has one of the top doctoral training programs in behavior analysis in the country, yet there are only 28 Board Certified Behavior Analysts (BCBA) in our state.

The bills signed into legislation earlier this month not only makes treatment more affordable, it also makes West Virginia a more attractive place for analysts to work.

"Our surrounding states have had legislation that covers insurance for autism for awhile," said WVU Assistant Professor Claire St. Peter, Ph.D. "So when we were graduating students, well they were being drawn to other states."

WVU developed a Masters program in hopes of giving students the skills needed to combat the lack of autism services in rural areas but without insurance coverage, most of those students left the state.

"So we were graduating students who were from West Virginia, who wanted to stay in West Virginia, who couldn't just find a job because there was no coverage and the families couldn't afford it," St. Peter said.

In North Carolina, WSOC-TV reports on a proposed mandate.

Insurance Legislation in West Virginia and Louisiana

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

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

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

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

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

A Thursday  release from Autism Speaks:

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

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

Insurance Legislation in New Hampshire and West Virginia

In New Hampshire, the Union-Leader reports:

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

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

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

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

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

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

In West Virginia, The State Journal reports: 

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

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

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

.... 

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

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

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

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

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