Biomarker Research

Uncertainty is the major theme of The Politics of Autism.  A new research initiative aims to reduce it.  At The Connecticut Post, Karen Weintraub reports on research into biomarkers (e.g., EEGs, eye tracking).

“Your likelihood of receiving an autism diagnosis, unfortunately, is very much dependent on where you live and which clinic you’re able to get to—if you’re able to get to a clinic at all,” said Alison Singer, president of the Autism Science Foundation, an advocacy group that supports autism research.
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There is no way to objectively determine whether a child has autism. Diagnosis is a judgment made by a clinician after watching a child and interviewing parents and caregivers, said James McPartland, a Yale associate professor of Child Psychiatry and Psychology at the Yale Child Study Center, who is leading a $28 million national effort to change that.

What’s needed are “ways of quantifying human behavior that are not subjective and don’t involve human clinical judgment,” said McPartland, who is collaborating with researchers from four other institutions - Duke University, Boston Children’s Hospital, the University of Washington/Seattle Children’s Research Institute and the University of California, Los Angeles - that make up the Autism Biomarkers Consortium for Clinical Trials.

Inland Regional Center

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

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

The San Bernardino shooting took place at the Inland Regional Center, which may reopen this week. Matt Guilhem reports at NPR:

The Inland Regional Center connects families in need to care providers like Autism Response Team in the neighboring city of Redlands.

Dr. Kesjana Cake, the regional director of Autism Response Team, says her team works closely with clinicians, service coordinators and managers at IRC.

"We had several families that contacted our office just checking to see how our employees are doing, how we were doing," she says. "I mean, we work very closely with these families. We're in their homes most days of the week, so we kind of become an extended family to them."

Cake says she and her clients are dealing with a situation that feels surreal. While she wasn't at the IRC when the shooting occurred, she says she's not sure what she'll feel when she goes back.

As previous posts have noted, IRC has had severe difficulties.

Implementing State Insurance Mandates

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

Autism has an article titled "Assessing Early Implementation of State Autism Insurance Mandates." The authors are Julia Berlin Baller, Colleen L Barry, Kathleen Shea, Megan M Walker, Rachel Ouellette and David S Mandell.

The abstract:

In the United States, health insurance coverage for autism spectrum disorder treatments has been historically limited. In response, as of 2015, 40 states and Washington, DC, have passed state autism insurance mandates requiring many health plans in the private insurance market to cover autism diagnostic and treatment services. This study examined five states’ experiences implementing autism insurance mandates. Semi-structured, key-informant interviews were conducted with 17 participants representing consumer advocacy organizations, provider organizations, and health insurance companies. Overall, participants thought that the mandates substantially affected the delivery of autism services. While access to autism treatment services has increased as a result of implementation of state mandates, states have struggled to keep up with the demand for services. Participants provided specific information about barriers and facilitators to meeting this demand. Understanding of key informants’ perceptions about states’ experiences implementing autism insurance mandates is useful for other states considering adopting or expanding mandates or other policies to expand access to autism treatment services.

Experience of an Autistic Person in DC

I conclude The Politics of Autism by noting that we will see more and more autistic adults take part in political life.  At National Journal, reporter Eric Garcia writes about his own experience as an autistic person, explaining his introduction to Washington:

MY DAD AC­COM­PAN­IED me to D.C., help­ing me move in­to in­tern hous­ing on Cap­it­ol Hill. After two days, he left—and I was on my own without any adults for the first time in my life.

As my in­tern­ship un­fol­ded, it proved to be the first time my vo­ra­cious love of polit­ics and policy no longer made me a so­cial out­cast—but was in­stead cel­eb­rated. Dur­ing Q&As, pro­fes­sion­al-de­vel­op­ment group meet­ings, or cas­u­al con­ver­sa­tions, my know­ledge of polit­ics was seen as an as­set. It made me at min­im­um a curi­os­ity and at best someone who could im­press my su­per­i­ors at work and my fel­low in­terns. They liked that I knew ran­dom facts about mem­bers of their con­gres­sion­al del­eg­a­tion or about the fo­cus of their re­spect­ive of­fices.

Wash­ing­ton is a place where ob­ses­sions about par­tic­u­lar policies, or polit­ics in gen­er­al, can ad­vance ca­reers; in that sense, it’s a good place for those on the spec­trum. But liv­ing and func­tion­ing in Wash­ing­ton also comes with par­tic­u­lar dif­fi­culties. This is a city built on net­work­ing, and when I first got here, I was very re­luct­ant to do it. It wasn’t un­til my room­mates—also White House in­terns—star­ted in­vit­ing me to parties or brunch dates with our col­leagues that I began feel­ing safe in so­cial set­tings.

Waiting for Medi-Cal

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

David Gorn writes at California Healthline:

State health officials' proposals for autism therapy in Medi-Cal -- a relatively new benefit -- have ticked off many in the children's advocacy world.

Autism therapy was ruled in September 2014 to be a Medi-Cal benefit, but getting that care to children has been a huge hassle, advocates said -- and it promises to be more difficult if the draft letter to health plans becomes policy, they said.

"There are definitely some kids getting treatment now who weren't getting care [a year ago]. But there has been an unacceptably slow implementation for the majority of Medi-Cal beneficiaries who still need the care," said Kristin Jacobson, executive director of Autism Deserves Equal Coverage, a children's advocacy group based in Burlingame.

Only a tiny fraction of the estimated 75,000 Medi-Cal children with autism are getting treatment for it, Jacobson said.

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The central complaint has been a lengthy diagnostic assessment that the state requires for every Medi-Cal beneficiary of autism therapy, even if a child has already been diagnosed. Getting that assessment has resulted in long waiting lists -- up to six or nine months in some cases -- for families trying to access care, advocates said. Because the state is bound by statute to provide care within 10 to 15 days of initial diagnosis, that lengthy wait violates federal law;

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According to written responses from Norman Williams, DHCS spokesperson, the state's requirement for a comprehensive diagnostic evaluation will benefit Medi-Cal children by ensuring proper care and resulting in better outcomes.

"The primary purpose of a diagnosis is to provide guidance for intervention/treatment," the statement said. "Accurate diagnoses lead to appropriate treatment, which leads to enhanced outcomes. Accurate diagnoses, patient safety and appropriateness of treatment services are the compelling reasons for a comprehensive diagnostic evaluation."

TRICARE Reimbursement Cuts

In The Politics of Autism, I write about ABA.

Amy Bushatz reports at Military.com:

Specialists providing autism care to military families will face a pay cut in the spring, Tricare officials announced Tuesday, as reimbursement rates are reduced by as much as 35 percent for providers in certain locations.

Providers of applied behavior analysis therapy are currently reimbursed at a fixed rate based on education and certification level, regardless of location. Providers with a doctorate or master's degree are paid an hourly rate of $125, those with a bachelor's degree, $75; and technicians, $50.

Under the new plan, the national hourly rate will be set at $114.23 for doctors, $107.14 for those with a master's, $67.39 for those with a bachelor's and $40.12 for technicians. The rates will then be adjusted based on a geographic rate calculation used by Medicare.

Patricia Kime reports at Military Times:

The move will increase reimbursements for some therapists while trimming rates for others, but DoD officials said the changes should not affect the nearly 10,000 Tricare beneficiaries who receive Applied Behavior Analysis therapy for autism symptoms.
Tricare consolidated its various ABA therapy benefit programs in 2014 to ensure that active-duty and retiree dependents with autism had access to treatment.

But the new Autism Care Demonstration Project also proposed slashing reimbursement rates to some providers by nearly half, prompting some to say they would no longer accept Tricare.

DoD postponed implementation of the severe cuts, contracting instead with the Rand Corp. and a health policy research firm to help determine whether the level of coverage for ABA in the military health system was appropriate.

The new reimbursement rates — 20 percent higher than Medicaid's rates for ABA — are a result of those reviews.

Lawsuit: Community Services for Pennsylvania Adults

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. “We always say at the age of 21 the (school) bus stops coming,” says Nina Wall, the director of Pennsylvania’s autism services.[i] “They put so much effort and wonderful work into the school experience and for most people all that work all that effort all that wonderful enriching experience just disappears,” says autism parent Linda Ster. “They don’t even understand it, it’s like how come I’m not going to school and I’m sitting at home with mom watching TV all day long.”[ii]

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.[iii]

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[i] Jeff Hawkes, “Life After School Poses Challenges for Garden Spot Grad with Autism,” Lancaster Online, August 24, 2014. Online: http://lancasteronline.com/news/local/life-after-school-poses-challenges-for-garden-spot-grad-with/article_072c1490-2955-11e4-aeb8-001a4bcf6878.html.[ii] Camille Smith, “What Happens to People with Autism When They Age Out of School?” WBEZ, January 2, 2015. Online: http://www.wbez.org/news/what-happens-people-autism-when-they-age-out-school-111326.[iii] Paul Shattuck, et al., “Post–High School Service Use among Young Adults With an Autism Spectrum Disorder,” JAMA Pediatrics (February 2011): 141-146. Online: http://archpedi.jamanetwork.com/article.aspx?articleid=384252.

Matt Miller reports at PennLive:

An organization that wages legal battles on behalf of people with disabilities has launched a new attack, this time on what it claims is Pennsylvania's lack of community-based programs for autistic adults.

The Disability Rights Network of PA argues in a lawsuit it filed in U.S. Middle District Court on behalf of three men with autism that the state Department of Human Services is violating federal law, including the Americans With Disabilities Act.

Because there aren't enough community-based residential programs for those with autism, one of their clients is being held in a county prison and the other two aren't being permitted to leave state psychiatric hospitals, the network contends.

All three clients face the same dilemma, according to the suit: They can't be released because they have no place to go

Biobank

The Politics of Autism includes an extensive discussion of scientific research.

Lisa Fine reports at KQED:

Thousands of Northern California families of children with autism are being recruited to join a new project to help scientists understand how heredity and environmental factors determine where each youngster falls on the spectrum of the disorder.‘Teasing apart the [autism] spectrum, we might makes some leaps forward.’

Kaiser Permanente aims to sign up 5,000 children and young adults with autism — along with their biological parents — to contribute a blood or saliva sample to a “biobank” that will enable researchers to track and identify common factors in various types of autism.

Kaiser Permanente has 3.8 million members in Northern California, with 17,000 children and adults diagnosed with autism. Because participating children are Kaiser health plan members, researchers plan to evaluate their health records in conjunction with the genetic samples in an effort to unlock insights into autism causes, best treatments, medications and possible prevention strategies.

“We have a really incredible population to study,” said Lisa Croen, director of the Kaiser Permanente Autism Research Program and a senior research scientist at the Kaiser Permanente Northern California Division of Research. “We have lots of information for them like lab tests, medications taken –- a huge wealth of clinical information. We have the ability to re-contact these families and collect even more.”

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Since recruitment began in July, Kaiser has enrolled 270 families, health plan officials said.

“This resource can’t exist without families participating,” Croen said. “Hopefully, together we can all make a difference.”

Restraint and Seclusion in Arkansas

In The Politics of Autism, I write:

No federal laws specifically restrict restraint and seclusion in public and private schools and there are widely divergent laws at the state level [i] Thirty-two states require parental notification when disabled students are subject to these measures, but 18 states and the District of Columbia have no such protection.[ii] And even where notification laws are in place, compliance may be spotty.[iii] A U.S. Senate report offers some disturbing examples of alleged abuse:

• In December 2011, a Kentucky school district restrained a nine year-old child with autism in a duffel bag as punishment. The child’s mother witnessed him struggling inside the bag while a teacher's aide stood by and did nothing.
• In North Carolina, the mother of a five-year-old girl with autism and other developmental disabilities agreed to the use of restraints only in the event that her daughter became aggressive. [S]he discovered that her daughter had been left alone and strapped to chair, even though she had shown no signs of aggressive behavior. Although the mother believed her daughter was restrained over ninety percent of the time she was at school, the school denied restraining the child on a regular basis. The school eventually released records showing that the IEPs of multiple special education students did not accurately discuss the types of interventions being used or were otherwise incomplete.
• A behavior analyst in Connecticut recommended brief time-outs for an eight-year-old girl with autism and other disabilities. However, when the girl’s mother realized that the time-outs had escalated to repeated seclusion in a small cinderblock room, she requested that the school discontinue their use. The behavior analyst opted to continue the seclusion and the school supported this decision. The mother said that she felt “powerless” to stop them.

[i] U.S. Government Accountability Office, “Seclusion and Restraints: Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers,” GAO-09-719T, May 19, 2009.  Online: http://www.gao.gov/new.items/d09719t.pdf.[ii] Jessica Butler, “How Safe Is the Schoolhouse? An Analysis of State Seclusion and Restraint Laws and Policies,” Autism National Committee, January 20, 2014. Online: http://www.autcom.org/pdf/HowSafeSchoolhouse.pdf.[iii] U.S. Senate, Health , Education, Labor, and Pensions Committee, “Dangerous Use of Seclusion and Restraints in Schools Remains Widespread and Difficult to Remedy: A Review of Ten Cases:  Majority Committee Staff Report,” February 12, 2014. Online: http://www.help.senate.gov/imo/media/doc/Seclusion%20and%20Restraints%20Final%20Report.pdf.

Brian Fanney writes at Arkansas Online:

Autistic children are injured in Arkansas public schools because there are no mandatory guidelines on the use of restraints on students, advocates said recently.

Two lawyers -- one from a disability advocacy group and the other with a practice focused on special-needs children -- said Arkansas schools ignore voluntary state guidelines and don't always tell parents when children are restrained.

That can lead to dangerous situations for autistic children, in particular, because their behavior can be more difficult to manage, the lawyers told the Task Force on Autism at its Nov. 20 meeting at the state Capitol.

In one study, the U.S. Department of Education's office of civil rights said students with disabilities represent 12 percent of students in its sample, but nearly 70 percent of the students who are physically restrained by adults in their schools.

"We're seeing injuries of spiral fracture, kids getting injured, kids getting manhandled," said Debra Poulin, legal director at Disability Rights Arkansas. "We see all sorts of crazy things that you just wouldn't really believe."

Theresa Caldwell, a lawyer who specializes in special education law, said parents may not be aware that their children are being restrained. There's no law or regulation that requires schools to inform them, she said.

"There's absolutely no oversight so that means we don't know the number of autistic kids that have been physically restrained," she said. "We don't know how much it's happening. The schools themselves do not have to keep track of it."

Autism and Two-Year Colleges

In The Politics of Autism, I discuss  higher education, and adults on the spectrum.

We do know that autistic students suffer high levels of depression, anxiety, and social isolation. We also know that their difficulties can affect their academic performance. (Group projects can be hard.) They have to cope with these problems without the protection of an IEP, since the Individuals with Disabilities Education Act does not apply to higher education. The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 provide for certain accommodations (for instance, extra time for tests), but the student has to seek them. According to Jane Brown Thierfeld, co-director of an organization of professionals who assist autistic students, for every student receiving special services, there are one or two on that same campus who have not come forward.

At Autism Research and Treatment, Anne M. Roux, Paul T. Shattuck and colleagues have an article titled: "Characteristics of Two-Year College Students on the Autism Spectrum and Their Support Services Experiences.  The abstract:

Approximately 80% of college-going youth with autism in the US attend a 2-year college at some point. These community-based, universally accessible institutions offer both academic and vocational courses and have experience in teaching diverse learners. This study used nationally representative survey data from the National Longitudinal Transition Study-2 to describe the characteristics and services experiences of adults with autism who attended postsecondary education after high school, focusing on those who attended a 2-year college. Over 60% of those who attended 2-year colleges had little to no trouble conversing or performing functional skills like counting change during high school, and extracurricular participation was common (93.8%). Most 2-year college attenders (85.7%) were able to navigate to places outside the home versus 43.9% of those with no postsecondary education. Over half took vocational courses at 2-year colleges, while one-quarter pursued academic study. Less than half (48.6%) of those who disclosed their disability to the school reported receiving services, accommodations, or other help. Most (87.3%) felt they received enough help, but fewer (68.0%) felt the services they received were useful. Future research should delineate specific needs of students with autism in 2-year college settings and identify what supports are needed to improve persistence and completion rates.

Students with Disabilities and Higher Education

In The Politics of Autism, I discuss  higher education, and adults on the spectrum.

By most measures of economic well-being, young college graduates surpass their peers with less schooling. And this disparity is greater than in earlier generations. To some extent, then, the fate of autistic people hinges on their ability to get college degrees. About a third of autistic high school graduates eventually go on to some kind of postsecondary education, at least for a while. That rate is higher than one might have expected years ago, but lower than for all other disability groups except intellectual disabilities or multiple disabilities. The numbers are increasing, largely because early identification and intervention have enabled autistic students to advance farther than before. “Behavioral therapy at an early age has really opened doors,” said a Ventura College instructor who has worked with ASD students for many years. The ABLE Act will also reduce some of the economic barriers to college attendance. Unfortunately, we know very little about autistic students’ completion rates or the quality of their education.

A news release from Senator Bob Casey (D-PA):

I join the Obama Administration and many of my colleagues in celebrating the 40th anniversary of the Individuals with Disabilities Education Act (IDEA). Before 1970, over one million students with disabilities were excluded from public schools. Thanks to the tireless work of advocates, today over six million children are served through special education programs in public schools.

While we take this week to celebrate the progress of students with disabilities, we cannot slow down. Although students with disabilities are seeing greater success in K-12, there are still many barriers in terms of ensuring a smooth transition to inclusive postsecondary education and employment. This week I sent a letter to the Department of Education requesting increased access to information and improved data collection for students with disabilities so there are fewer obstacles to success in college.

While the current online federal resources to help students navigate the college decision process are helpful, none exist for students with disabilities. By making small changes to the existing surveys from the Department of Education, we can help students and families access more information about disability services on campus.

Honest Talk about Optimal Outcomes

In The Politics of Autism, I talk about outcomes.

At The Cleveland Clinic, Thomas Frazier offers some honest observations on optimal outcomes:

What about the kids who lose an autism diagnosis and don’t get a new diagnosis? Did their autism go away? Those are big questions for parents.

We do see very rare cases of what researchers call “optimal outcome.”

Usually these are high-functioning children. They are diagnosed because of mild behavioral signs and symptoms. For example, they may be developing language or social skills slowly but still have strong ability to organize their world.

Eventually, often after a few years of therapy, they no longer fit the diagnosis. The study found this in about 3 percent of cases.

I don’t want to downplay these success stories. Helping kids improve is exactly what we want to do every day.

But I do must stress that it’s not the norm. Based on you child’s case — especially if the diagnosis came from a specialist — work with your care team to set realistic goals.

Unlawful Trade Practice in Oregon

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

At The Lund Report, Chris Gray reports that autism dad Paul Terdal has filed an unlawful trade suit against Kaiser Foundation Health Plan of the Northwest, arguing that the company is  a “healthcare services contractor” -- and so does not have immunity to Oregon's Unlawful Trade Practices Act.

Terdal told The Lund Report that he’s suing Kaiser because, prior to 2011, he paid for his sons’ autism treatment -- applied behavior analysis -- with cash, when his insurance policy and a 2007 state autism law should have required the healthcare organization to pay those claims. “We couldn’t get him as much as he needed,” Terdal said. The Portland father also took time off work to assist with his sons’ therapy needs.

“When my boys were diagnosed with autism in 2008 and 2009, Kaiser recommended ABA therapy – but informed me (incorrectly) that it wouldn’t be covered,” Terdal wrote in a follow-up email. “I’m asserting that Kaiser should reimburse my actual expenses for ABA therapy – and also for the amount that Kaiser should have been spending all along, but for its failure to comply with Oregon law and the terms of the contract.”

He’s also suing Kaiser for breach of contract, and said he has been working with the Insurance Division to resolve the disagreement, but filed the tort before the statute of limitations would have expired on the oldest claims, since the Insurance Division informed him they would not make a decision until next year.

Whether Terdal’s unlawful trade case gets anywhere in the courts is hard to say -- as far as he could tell, nobody has ever gone after a health plan like this before, but he said he got the idea from previous autism lawsuits, including the landmark federal ruling against Providence Health Plan -- which argued in the proceedings that, like Kaiser, it also was a healthcare services contractor and not an insurer.