Ne'eman on Violence, Mental Health, and Discrimination

Ari Ne'eman of the Autistic Self-Advocacy Network, speaks to Al Jazeera about mental health policy issues arising in the wake of the Newtown shooting:




An excerpt:

Well, a number of folks reported from our membership an increase in discrimination. Many families reported that schools were now looking at their children with additional suspicion. People who had perhaps recently made the decision to come out of the closet about their diagnosis at work, or in their relationships, suddenly started to feel that may have been a mistake and that discrimination might be on the rise. One of [the] things that I found particularly concerning is that there was an effort on the part of some to try and say 'well we don’t really need to have a conversation about gun violence in this country, all we need to do is have a conversation about people with psychiatric disabilities'. And, frankly, that’s not the case. If we look at the research and evidence, there is no relation between Asperser’s syndrome and violent crime. If we look at the broader scope of disability, say another diagnosis, psychiatric disability or mental illness, we find a similar lack of correlation. In fact, even when we look at the small subset of people with psychiatric disabilities who some studies have found to have an increased correlation with violent crime, that correlation disappears when we control for substance abuse. That’s actually one of the only things that does tend to correlate with violent behavior—a history of substance abuse, but not so much a mental illness or an autism spectrum disorder diagnosis. 

IACC and the Affordable Care Act

Autism Speaks reports:

The Interagency Autism Coordinating Committee (IACC) has pledged to take a more assertive role in federal autism policy, starting with the issue of assuring ABA coverage is included in all state health insurance exchanges created under the Affordable Care Act (ACA).

Meeting Tuesday in Bethesda, MD, IACC members concluded that the IACC should accomplish more than its minimum charge of drafting an annual update to the Strategic Plan for Autism Research. It was decided that the committee should take an active role in advising the U.S. Department of Health and Human Services (HHS) about public policy affecting the autism community.

The IACC’s Services Subcommittee will meet soon to consider a draft letter to HHS Secretary Kathleen Sebelius advising her on the ACA issue. Although required by the law, only half the states so far are including behavioral health treatment, including ABA (Applied Behavior Analysis), in their essential health benefits packages. The committee members felt strongly that there was a unique and timely opportunity to address this issue and that the IACC had the expertise and charge to advise the HHS Secretary.

Chair in Adult Autism

A release from Rutgers:

Two families, longtime friends who between them have three sons on the autism spectrum, have made a $1.5 million gift to Rutgers University to endow a faculty position in adult autism, a field in which there is a critical shortage of trained professionals and support services.

The Karmazin and Lillard Chair in Adult Autism is being established by Dina Karmazin Elkins, daughter of Mel Karmazin, philanthropist and the former CEO of Sirius XM Radio; Michael Lillard, Chief Investment Officer of Prudential Fixed Income, and his wife, Amy.

The endowed professorship is unique in that it is specific to adults with autism and will address much needed intervention and research for adults with autism spectrum disorders from both academic and training perspectives. It will be based at Rutgers University’s Graduate School of Applied and Professional Psychology, (GSAPP), which for decades has been providing leading-edge services to children and adults with autism spectrum disorders and other developmental disabilities.    

“The Graduate School of Applied and Professional Psychology has a strong desire to work on finding innovative ways to help adults with autism, a goal that is close to our hearts,” said Amy and Mike Lillard, whose two teenage sons are on the autism spectrum.  “The school’s history of providing services to those with disabilities and educating students to continue that work makes Rutgers an ideal place for a chair in adult autism.” 

TV Report on Autism and Marijuana

Previous posts have discussed the use of marijuana in the treatment of autism. In Oregon, KPTV reports:

 An Oregon family has turned to medical marijuana to manage their son's severe autistic rage.

"It was indescribable, it was horrifying," said Jeremy Echols, father of 11-year-old Alex. "When you've got no other options, are you honestly gonna say no?"

Eleven-year-old Alex Echols is severely autistic, and his doctor said Alex's self-destructive behavior is brought on by Tuberous Sclerosis, a rare, genetic disorder that affects about 50,000 people in the U.S. The disorder causes unregulated growth of non-malignant tissue in organs. In Alex's case, his neurologist said growths in Alex's brain have led to seizures and autism.

"Alex cannot communicate using words and that leads to behavior that is very frustrating for him and for those caring for him," said Dr. Colin Roberts, a pediatric neurologist at Doernbecher Children's Hospital in Portland.

It is unfortunate that the print version of the story uses a loaded phrase such as "autistic rage." It summons up the myths that surfaced in the wake of the Newtown massacre.

  KPTV - FOX 12

Support for ASD Adults

Previous posts have discussed the often-underserved needs of adults on the spectrum, including employment assistance. A release from Advancing Futures for Adults with Autism (AFAA):

Advancing Futures for Adults with Autism (AFAA) has selected the inaugural winners ofAFAA Applauds, a national initiative recognizing innovative, high-quality support programs for adults living with autism spectrum disorders (ASDs).

AFAA will promote the winning programs as cutting-edge models for other organizations across the country to replicate. The goal is to meet the increased demand for effective services, provide accurate information on promising practices and generate awareness about ASDs and adult concerns.

Through a competitive application process, AFAA selected six organizations for exemplary results-oriented employment, residential support and community life programs. Community life includes social skills, transportation, recreational, safety, spirituality or other categories of service that improve life experiences and outcomes for those living with autism.

The winners:

• Autism Services Inc., New York Autism Services Inc. helps individuals with autism become involved in the visual and performing arts and has improved their quality of life.

• Chapel Haven, Connecticut Chapel Haven’s supported living program assists individuals with autism as they obtain jobs, gain a network of friends and participate in a vibrant community life. Chapel Haven’s program sets a high standard for excellence.

• Eden Autism Services, New Jersey Eden Adult Services’ multifaceted adult employment program promotes the meaningful engagement of adults with autism in their communities through paid employment and active volunteer service. The program has created successful employment opportunities for individuals with autism.

• Family Adult and Child Therapies (FACT), California FACT’s Generating All Possibilities 4-year program supports individuals with autism as they make informed decisions about work, college and where to live. The program helps prepare adults with autism for the future.

• Partnerships with Industry (PWI), California  PWI provides adults with autism the opportunity to find employment. PWI has helped individuals with autism reach their potential and experience independence.

• The Friendship Circle, California The Friendship Circle fosters spiritual, social, and educational experiences for individuals with autism. The program has created activities that bring value to the lives of individuals with autism.

Autism Speaks v. Cuomo Administration Rule

Autism Speaks has come out against the a Cuomo Administration rule effectively gutting New York's insurance mandate:

Autism Speaks today issued the following statement in response to new emergency regulations issued by the New York Department of of Financial Services regarding the licensure of ABA practitioners:

"New emergency regulations issued today by the Department of Financial Services (DFS) to implement the 2011 autism insurance law still do not address a prime concern of thousands\ of New York families. These rules continue to ignore the clear direction contained in the statute that behavior analysts, certified by the Behavior Analyst Certification Board (BACB), are qualified to provide applied behavior analysis and be compensated by health insurers under the law.

"The DFS rules continue to require state licensure of behavior analysts despite the fact that state licensure does not yet exist in New York State for this profession. Because of this, Autism Speaks, in working with legislative sponsors to enact the 2011 statute, specifically required that behavior analysts be certified by the BACB. The BACB certification is a national 'gold standard' for behavior analysts, but New York State continues to narrowly interpret the statute to the detriment of those seeking health coverage under the new law.

"Autism Speaks will continue its work and use all available means at its disposal to change this regulation so that it complies with state law."

Vicki Knapp, President of the New York State Association for Behavior Analysis, explained to me in an email:

Our biggest concern is this:

“(h) Certified behavior analyst means a licensed provider who is certified as a behavior analyst pursuant to a behavior analyst certification board.
(i) Licensed provider means a psychiatrist, psychologist or licensed clinical social worker, or an individual licensed or otherwise authorized under Education Law Title VIII to practice a profession for which ABA is within the scope of that profession”

The issue here is that they define a certified behavior analyst as “…a licensed provider who is certified as a behavior analyst…” Behavior analysts often do not hold a license in another profession. The fact that the Department of Financial Services defined a behavior analyst as holding a license in psychology, psychiatry or social work is in direct conflict with the Autism Insurance Law, which lists Behavior Analysts as qualified providers, in their own right. If the DFS regs don’t change, that leaves only about 40 people in New York to fill that role—clearly not enough. If the regs change to allow BCBAs to provide without a supplementary license, that opens the field up for over 400 people to provide that service. 400 is still not quite enough, but better than 40.

More on the New York Rule

The Age of Autism has an action alert on a New York rule that would effectively gut the state's insurance mandate:

Just weeks before the New York autism insurance reform bill went into effect on January 1 the Cuomo administration issued an erroneous interpretation of the law that guts the only real step forward for families dealing with autism.

Governor Cuomo’s Department of Finance has issued an “emergency” rule finding that will not recognize the credentials of Board Certified Behavior Analysts (BCBA) for insurance billing purposes, so unless your behavior analyst also has a New York license as a physician, psychologist or other licensed professional they will not be allowed to bill insurance companies. This interpretation reflects neither the letter nor intent of the law Governor Cuomo signed with much media attention and fanfare at the end of 2011.

Thousands of students in New York schools receive ABA as required in their IEPs provided by BCBAs, and those BCBAs are paid with tax dollars. Yet when it comes to insurance company dollars all of a sudden BCBAs aren’t properly credentialed. This is rank toadying to the insurance companies.

New Yorks, and New Yorkers only please, click on the T alert to send an email to the Governor and ask him to stop delaying therapy for some of New York’s most vulnerable students.

And please call the Governors office and politely ask the staffer to tell the Governor to do the right thing and provide ABA for New York’s students with autism.

Please share this email with friends and family and please post to Facebook and other social networks.

Governor Cuomo will probably run for president. He will have a hard time if the disability community sees him as an opponent.

Shortage of Child Psychiatrists

Apparently in response to Newtown,  the media are reporting on the shortage of child psychiatrists.  Unfortunately, some of the resulting stories refer to autism as a "mental illness."

From The Des Moines Register (via USA Today):

More Iowa children are being diagnosed with mental illness than in past decades, especially autism and attention deficit/hyperactivity disorder. The increase in children needing mental health care and an inadequate system to help them are among an array of challenges facing this generation of Iowa's kids.

"There really isn't a children's mental health system," said Dr. Jennifer McWilliams, a child psychiatrist at the University of Iowa. "So much needs to be improved — I don't even know where to begin."

From The Bangor Daily News:

For at least 30 years, experts have been sounding the alarm about the shortage of child psychiatrists across the country. In 1980, the Graduate Medical Education National Advisory Committee said so many children and teens were projected to need help that the U.S. would require 8,000 to 10,000 child and adolescent psychiatrists by 1990. In 1990,the Council on Graduate Medical Education said the country would need 30,000 by the year 2000.

Neither goal was met.

In 1999, the surgeon general said only about 20 percent of mentally ill children received mental health services and only a fraction of that 20 percent got that help from a child psychiatrist. Today, according to the American Medical Association, there are about 7,600 practicing child and adolescent psychiatrists in the county, less than experts said the U.S. would need 23 years ago.

Urban areas typically have the easiest time finding and keeping psychiatrists. Rural areas struggle the most.

And Maine is very rural.

“I see a huge need,” said Sandra Fritsch, a child psychiatrist and president of the Maine Council of Child Adolescent Psychiatry.

She created a map to show the number of child psychiatrists in each county in Maine. In 2011, Cumberland County had the most at 22. Androscoggin County had four.

Oxford, Franklin and three other counties had none.

The New Haven Register quotes  Gregory Fritz, director of child and adolescent psychiatry at the Brown University School of Medicine and academic director for Bradley Hospital in Providence, R.I..  Fritz identifies three reasons for the shortage:

It takes a minimum of five years in medical school to become certified in both adult and child psychiatry and can be longer, similar to some higher-paying specialties. More years in school mean higher student loans.

“The medical students to my eye now pay a little more attention to income … and the reason is their debt is much higher,” Fritz said. He said child psychiatrists earn about the same as general practitioners. So, many students who want to work with children go into pediatrics instead.

Insurance reimbursements are given for the service, not the time spent on evaluations or medication sessions. “The problem is it takes longer to do it for a child,” because parents and teachers must be consulted. “Fundamentally, the payment per hour is less,” Fritz said.

Finally, “there is still significant stigma about mental illness and psychiatric patients, and that stigma also applies to those who treat those stigmatized patients,” Fritz said.

Not surprisingly, the insurance companies screw up:

 The Register called several doctors’ offices listed on Aetna’s website as “Psychiatry, child and adolescent.” Of those who responded, all said they treat adolescents only, despite being listed as treating children as well.

“I will see about age 15 and my partner will see a little bit younger; he’ll see 14,” said Dr. Douglas Berv of Hamden. “I’m not trained or certified with children and that’s where you’re running into a problem.”

He said of the rosters of providers issued by insurance companies, “Their lists are never correct.”

Another on Aetna’s “child and adolescent” list, Dr. Robert Ostroff, head of adult psychiatry at the Yale Psychiatric Hospital, said he does not treat children and has heard of the problems in finding doctors who do.

“It’s been very hard to get my insured patients’ children seen by child psychiatrists,” he said. “I have people who can’t afford to pay out of pocket. … It’s a real problem.

Mandate Problems

Putting a mandate in place is a beginning, not a conclusion.  Problems crop up, as several examples illustrate.

In New York, The Syracuse Post-Standard provides an update on rulemaking by the state’s Department of Financial Services.

The issue comes down to differences between a law and the regulations to implement it, and the differences between certification and licensing.

The law signed by Gov. Andrew Cuomo in 2011 requires insurers to pay up to $45,000 a year for autism services that include a form of extended therapy called applied behavior analysis. That therapy breaks complex skills into small steps to improve skills and address concerns related to eating, feeding sleeping, toileting and challenging behaviors.

New York's law said that the therapy must be provided by or at least supervised by a certified behavior analyst. New York has roughly 750 board certified behavior analysts. The regulation requiring licensing cuts the pool of eligible supervisors to 43. [emphasis added]

The state Department of Financial Services, which oversees the insurance and banking industries, has not yet responded to a request for comment.

During the 2011-12 election cycle, the insurance  industry made $404,150 in campaign contributions to Cuomo, who appointed the head of the department. Judith Ursitti, Director of State Government Affairs for Autism Speaks, says that industry lobbying may have swayed the regulatory decision.

“The reason I say that is because we’ve passed autism insurance laws in other states, and once we pass the law and begin working on implementation , this particular roadblock seems to be popping up. We’ve had similar situations in Rhode Island and Virginia where we have worked through the process and resolved it.”

Autism service providers are encouraging families of children with autism to write the Department of Financial Services’ Superintendent, Ben Lawsky, to encourage him to “implement the law as it was intended” [emphasis added]

 In Michigan, MLive reports:

Michigan’s new program allowing health insurance companies to be reimbursed for paid claims related to autism coverage is off to a slow start.

The reimbursement provision for carriers and third-party administrators was part of a compromise that helped the autism coverage plan win approval in the Michigan Legislature and be signed into law last year. The law mandates that insurance companies provide coverage for autism treatment and diagnosis. The reimbursement is designed to help companies offset those costs.

The state’s autism coverage fund is allocated $15 million for the current fiscal year that began in October -- but only two claims had been submitted and paid out to insurance companies as of this week, according to the state’s Department of Licensing and Regulatory Affairs. The total claims paid were a little more than $3,000 combined.

In Ohio, The Toledo Blade reports on a contention that actions by Governor John Kasich may violate the state constitution.

The Ohio Health Care Freedom Amendment was overwhelmingly supported by voters in 2011 and was largely seen at the time as a message to the federal government opposing President Obama’s health-care law. But the amendment also prohibits Ohio from mandating specific types of coverage, according to Maurice Thompson, executive director of the 1851 Center for Constitutional Law.

The last legislative session ended last month without final passage of a bill that had bipartisan support to require health policies issued in the state to include coverage for autism, a broad category of disorders affecting child brain development. The disorders can affect communication, attention, and behavior, among other things.

When the bill did not pass, in part because of opposition from business, Mr. Kasich ordered such coverage to be included in state policies for 39,000 government employees. He also sent the Obama Administration a written “comment” on proposed federal rules for implementation of the new Patient Protection and Affordable Care Act in Ohio that his office said have the effect of including autism spectrum disorder as part of the minimum coverage private insurers would have to provide under the law.

The governor’s action may not have technically violated the language of Ohio’s 21st right under its constitution’s Bill of Rights, but it violates the spirit of the amendment, Mr. Thompson said.
“We want to litigate that if we can,” Mr. Thompson said. “We’d like to get the autism mandate off the books because it can be highly destructive to the health-care market and small business. It precludes freedom of choice and violates the spirit of the health-care amendment.”

Insurance Mandate Action in California and Nebraska

More insurance mandate legislation is under way in the states. Autism Speaks reports on California:

Senate President pro Tem Darrell Steinberg has introduced a bill (S-126) to extend California's autism insurance reform law another five years to July 2019. The current law, which Steinberg also sponsored, stops taking effect July 1, 2014.

The law requires state-regulated health plans to cover behavioral health treatment, such as Applied Behavior Analysis, consistent with other benefits covered under their policies. Insurers are also required to maintain an "adequate" network of ABA providers.

The bill awaits committee assignment.

The organization also supports legislation in Nebraska:

Autism Speaks today endorsed LB-505, a new autism insurance reform bill, which would bar state-regulated health plans in Nebraska from refusing to cover the diagnosis and treatment of treatment of autism. Nebraska is now just one of 18 states that has yet to enact reform through legislation.

Sponsored by state Senator Colby Coash, the bill would require up to $70,000 a year in coverage for behavioral health treatment, such as Applied Behavior Analysis, for the first three years of treatment. The limit would be $20,000 annually thereafter until the age of 21.

Families paying thousands of dollars a year in insurance premiums would gain coverage for the screening, diagnosis, testing and treatment of autism spectrum disorder (ASD) for individuals up to the age of 21. During the past year, the reported incidence of autism has risen from 1 in every 110 American children to 1 in 88; a more recent South Korea study showed a 1 in 38 prevalence rate.

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."

Worm Therapy?

There are many "alternative" therapies for autism.  Most lack scientific foundation and some are dangerous.

The latest is -- no kidding -- worm therapy, based on the questionable "inflammatory disease" theory.  Fox News reports:

It’s a medication technique that many may be reluctant to swallow, but it’s slowly proving to be a valuable tool in treating autoimmune disorders – ingesting the eggs of parasitic worms.

The use of this alternative medicine is all part of the hygiene hypothesis – the idea that ‘harmful’ organisms might actually be protecting our immune systems. In the 19th century, people did not bathe as frequently as they do now, and many lived among ‘filth’ – but autoimmune diseases were virtually non-existent. Subsequently, those who currently live in third-world countries also have a lower rate of developing autoimmune diseases.

Dr. Eric Hollander got the idea to study the use of the hygiene hypothesis to treat autism when he noticed one of his patients’ behavior improve while self-medicating with Trichuris suis ova (TSO), the eggs of a whipworm.

Over the past 20 years, doctors have noticed parasitic worms help alleviate symptoms for patients with Crohn’s disease, but other disorders, like multiple sclerosis and type 1 diabetes are also being studied.

Some in the community are a tad skeptical. From The Autcast:

 Five gross things from Jessica Ryen Doyle's article for FoxNews.com about using worms to treat autism.

1. Using worms to treat autism is gross:

Dr. Eric Hollander got the idea to study the use of the hygiene hypothesis to treat autism when he noticed one of his patients’ behavior improve while self-medicating with Trichuris suis ova (TSO), the eggs of a whipworm.

2. Telling people how to access a treatment that has not been approved by the FDA is gross:

The Food and Drug Administration has not yet approved TSO therapy, but there are ways to buy the product – either online or by traveling to another country.

3. Calling an autistic teenager a child is gross. The guy Hollander is talking about is sixteen:

“So based on the fact that this child had substantial improvement – it didn’t cure the autism, but it had a major impact on repetitive and disruptive behaviors,” Hollander said. “So, we designed a study to test this in a more systematic fashion.

4. That doctors are actually planning to put worm eggs in autistic people and study what happens is gross:

Hollander said the trial will focus on 10 adults between the ages of 18 and 35, who are of normal intelligence with good verbal skills – that way the participants can describe the effects. Participants will also have allergies or a family history of autoimmune diseases.

During the first phase of the trial, participants will either get TSO (administered in a clear, odorless liquid) or a placebo for 12 weeks. There is a washout period of four weeks, after which patients will switch to the opposite (if they first received a placebo, they’ll get the TSO product). This way, everyone has the opportunity to get active medicine and a placebo.

5. The Simons Foundation is gross for funding this study.

 

Further Coverage of the Optimal Outcome Study

Time has a misleading headline -- "New Study Suggests Autism Can be ‘Outgrown’" -- but some useful content:

But while the research suggests that some children do extremely well, it’s also important not to give false hope or add to the guilt felt by some parents over their children’s prognosis, the researchers stress. “This is generally a lifelong disability,” says Fein. “I’ve seen thousands of children who had the best possible interventions continue to have significant intellectual disability and severe language deficits and we don’t know how to remediate those things.”

Autism advocates have other serious concerns about the research. “We don’t think the idea that people ‘outgrow’ autism—or can be made through treatment to become non-autistic— is accurate,” says Ari Ne’eman, president of the Autistic Self-Advocacy Network. Instead, he says study participants are likely “passing,” or acting non-autistic in order to fit in. Inside, they may be experiencing the same urges to engage in repetitive behavior and endlessly talk about their obsessions, but they have learned to channel their intense drives into repressing this and behaving the way normal people expect.

The Wall Street Journal, while also using the o-word, includes a note of caution:

Based on previous studies, Dr. Fein estimates 10% to 20% of children who were diagnosed with autism may achieve optimal outcomes.

Some experts caution that even people who no longer meet diagnostic criteria for autism may have subtle, residual idiosyncrasies.

Fred Volkmar, director of the Child Study Center at the Yale University School of Medicine, who wasn't involved in the recent study, described one former patient who has a master's degree, goes to work and lives on his own, but every night he eats the same meal, canned fish, reads on the computer about software and then goes to bed.

In many ways he could be considered as having an optimal outcome, said Dr. Volkmar. At the same time, the man wants to have a girlfriend but doesn't know how to talk about subjects outside of his one narrow interest, and he serves canned fish to anyone he has over.