More on Implementing the CA Mandate

Previous posts have included KNBC's coverage of the California mandate.  This clip features Areva Martin of the Special Needs Network:

View more videos at: http://nbclosangeles.com.

Limits of the CA Mandate

A post yesterday noted that California's insurance mandate just went into effect.  But as KNBC reports, it has the same limitations as most other such mandates:

But even though the goal was to make the intervention available to most Californians through their insurance, many plans will not offer it. That’s because most of the largest employers are exempt from state requirements under a 1970s-era law that was actually meant to protect privately funded pension plans.

The law says that any company that is self-insured – meaning that they pay for the care that their employees through a fund they’ve set up to handle those expenses – are subject to federal regulation, but exempt from many regulations imposed by the states.

Most large employers fall into this category, which means that covering behavioral therapy for autism will be voluntary for them.

Some large companies have decided to comply with the law anyway, said Tammy Pederson, director of insurance for Trumpet Behavioral Health. But many have not. 

“There’s starting to be huge pressure on companies to cover this,” Pederson said. “But it’s absolutely voluntary. They do it because the families need it.”

... 

Pederson, who is working with NBC4 to staff a call-in line for viewers trying to find out more about behavioral therapy and the new law, said it’s important for families facing expensive deductibles and co-payments to go back to their local regional centers to see if they can get financial assistance.

The regional centers, meanwhile, have been told by state lawmakers that it would be illegal for them to fund behavioral services for people who are covered under their insurance.

So thousands of families received notifications in June that they will be dropped from the state-funded program unless they can show that they are not covered.

Even more confusing, each regional center is responsible for implementing its own version of the law, so there is no clear answer to questions about whether there will be help with co-payments, or whether services will be interrupted as children transition from state-provided benefits to private ones.

 

CA Mandate Takes Effect

Previous posts have discussed the California insurance mandate. KNBC in Los Angeles reports that it takes effect today:

A behaviorally based treatment for autism that is widely considered one of the most effective ways to help children with the condition will come within reach of thousands of California families when a new law kicks in July 1.

Until now, insurance companies have classified the treatment, which can involve several hours per day of therapy and cost thousands of dollars each month, as educational rather than medical.

The new state law, however, will require most plans to cover it.

“It’s very important that insurance companies fund this because it’s medically necessary,” said Dr. Susan Schmidt-Lackner, an autism specialist who is an associate professor of clinical psychiatry at UCLA. “Behavioral interventions are one of the mainstays of treatment for autism.”

The treatment, called applied behavioral analysis, involves no medication and no special diets. Instead, therapists use a highly focused reward system to distill even the most complicated human interactions into a series of very simple steps that almost anyone can learn.

Monday, July 2: NBC4 Hosts Experts to Answer Your Questions About Behaviorally Based Treatment for Autism

Governors Sign Insurance Bills in Rhode Island and Louisiana

Autism Speaks provides a couple of updates on insurance legislation in the states.

Rhode Island:

Gov. Lincoln Chafee has signed a pair of bills enabling Rhode Island families to access insurance coverage for Applied Behavior Analysis (ABA) as intended under the autism insurance reform bill he signed last year, and adds pharmacy, psychology and psychiatric care as eligible benefits.

The 2010 law required that ABA be provided and supervised by a state-licensed Board Certified Behavior Analyst (BCBA), despite the fact Rhode Island has no such licensing process. As a result, fanmilies have been unable to access coverage for ABA care.

The new bills signed by Chafee include SB.2559 which creates a five-member Applied Behavior Analyst Licensing Board within the state Department of Health so that practiioners can get licensed in Rhode Island. The second bill, SB.2560, adds pharmacy, psychology and psychiatric care as eligible benefits.

SB.2560 also enables licensed psychologists to provide ABA provided they have "equivalent experence" or the therapy falls within "their scope of practice." Both laws take effect immediately.

Louisiana:

Governor Bobby Jindal signed legislation today expanding 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 will be able strating in 2013 to continue coverage for the screening, diagnosis, testing and treatment of autism spectrum disorder (ASD) for individuals aged 16 through 20.

Sponsored in the Louisiana House of Representatives by Rep. Franklin Foil (R-Baton Rouge), the bill eliminates any ceiling on lifetime benefits. Under the 2008 law, coverage ended once lifetime claims reach $144,000. In addition, the new law eliminates the current requirement that treatments be supervised by a physician or psychologist. A $36,000 annual cap on benefits is retained, but coverage was expanded to include firms with 10 employees or less. The current threshold exempted business with 50 employees or less.

New Study on Diagnostic Criteria and Prevalence

A reanalysis of 1989 data suggests that diagnostic substitution may account for much of the increase in autism prevalence. Shaun Heasley reports at Disability Scoop:

The original study, published in 1989, looked at hundreds of Utah residents ages 3 to 25 who were suspected to have autism. Clinicians used DSM-III criteria to assess individuals as “diagnosed autistic” or “diagnosed not autistic” and ultimately found an autism prevalence rate of 4 in 10,000 in Utah at that time.

But when a research team from the University of Utah applied current diagnostic criteria from the DSM-IV-TR to records from participants in the two-decades-old study, they found that most who were deemed to be autism-free at that time would receive the label today.

What’s more, the study authors indicate that the vast majority of those who went overlooked in the original study had low IQ’s and would now be diagnosed with both autism and intellectual disability.

“Thus, while it is well known that current DSM-IV-TR criteria increased the identification of high functioning individuals, our results indicate that they also increase identification of ASD among individuals with autism and intellectual impairment,” wrote researchers in the study published online in the Journal of Autism and Developmental Disorders this month.

The analysis found that 59 percent of those who were “diagnosed not autistic” in the 1980s would qualify as having autism today, while an additional 38 percent of people in this group showed some characteristics of autism.

Autism and the Health Care Decision

Autism Speaks issued a statement on the Supreme Court's decision in the health care case:

"The need for people with autism to get good quality care is Autism Speaks' first priority. Today's decision by the U.S. Supreme Court upholding the constitutionality of the Affordable Care Act provides clarity to our efforts to achieve that mission. It should be noted that the decision does not affect the autism insurance reform laws enacted by 31 states.

"The Affordable Care Act requires all states to establish a set of 10 'essential health benefits,' one of which is 'Mental health and substance use disorder services, including behavioral health treatment.' Congress specifically added 'including behavioral health treatment' to address autism therapies, such as Applied Behavior Analysis.

"For the past several months, Autism Speaks has raised concerns with the U.S. Department of Health and Human Services (HHS), which is overseeing the implementation of the ACA, that the requirement for behavioral health treatment coverage is not being pursued. Congress required such treatment be included as an essential health benefit and the U.S. Supreme Court has held the act constitutional. It is now the obligation of HHS to respect the intent of Congress by insisting all states include behavioral health treatment, such as ABA for autism."

You can learn more about Autism Speaks and the Affordable Care Act here.

From the Autism Society:

Today the Supreme Court issued its decision on the Affordable Care Act. The decision of the Court is a part of our nation's founding principles of checks and balances among our government institutions.

Regardless of today’s decision, the reality is that the problems faced by individuals living with autism and their families remain unsolved. We are continuing to struggle to access the services we need. Never mind that more than 30 states have recently required insurance providers to cover certain autism-related treatments and services. In many of these same states, individuals with autism are denied basic coverage. In fact, with ongoing cutbacks in government funding, more and more of us are using limited funds to pay for therapies, personal assistance or other necessities, and often times we cannot afford basic insurance for preventative care.

Often, when individuals receive medical coverage, they lack assistance for behavioral treatments, such as Applied Behavior Analysis (ABA), which for some individuals can be more necessary to improving outcomes than medical approaches. For those of us more significantly affected by autism, treatment can cost up to $72,000 per year. This cost is difficult for many families, particularly in times of need.

The Autism Society believes all governmental and non-governmental entities must understand that any health-care reform must not preclude individuals with developmental disabilities from life-changing therapies. In addition, for health-care to be effective, autism must be viewed as a whole-body condition that requires medical and non-medical treatments. While we applaud the federal and state continued support of Medicaid and Medicare, we need to do more

From Easter Seals:

Easter Seals applauds the U.S. Supreme Court on its Affordable Care Act (ACA) ruling. The Court’s ruling ensures the continuation of the law’s policies that protect access to private health insurance for children with pre-existing conditions and young adult dependent children up to the age of 26, bar lifetime health insurance caps, and leaves in place the essential policies that will take effect in 2014. Easter Seals believes access to appropriate and high quality health care services is essential for people with disabilities to live, learn, work and play in their communities. Simply put, the ACA is critical to millions of families living with disabilities.

Delaware Passes Insurance Mandate

WDMD radio (Lewes, Delaware) reports on passage of an insurance mandate:

The bill that would require insurance companies to provide coverage for screening and diagnosis services for children with autism was passed unanimously Wednesday afternoon by the Delaware House.

Senate Bill 22 will require insurance companies to cover for the screening and diagnosis of autism spectrum disorders in children under 21. The bill will also require insurers to provide for behavioral analysis and treatment. The CDC announced this spring that now, one out of every 88 children are diagnosed with some form of autism, including one out of every 54 boys.

The bill was passed by a 20-0 vote in the Senate on June 7, and now goes to Governor Markell for his signature. Click here to read the full bill.

Earlier, Jonathan Starkey reported at The News Journal [Wilmington, DE]:

Delaware’s legislation would come with a cost. The state’s self-insured health plan – which would not be required to cover autism treatments under the bill, but is expected to adopt its mandates – would face $2.7 million in additional charges over three years under the new mandate, according to estimates from the state Controller General’s Office. Higher premiums for state employees are possible.

William Kirk, vice president at Blue Cross Blue Shield of Delaware, said the state’s largest private insurer has not compiled cost estimates but said higher premiums are possible with a mandate.

“It’s a crystal ball sort of thing,” Kirk said. “We have no direct experience pricing this.”

See here for coverage of a previous version of the bill. 

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.

Brain Research News

Previous posts have noted how the media cover research on early detection. Here is an appropriately cautious story from HealthDay:

Electroencephalogram (EEG), a test that shows the electrical activity of the brain, might be used to spot autism in children, a new study suggests.

The study, conducted by researchers at Harvard University Medical School, looked at the synchronization of brain activity across different brain regions, as measured by EEG.

"These scientists used sensors to record electrical brain activity across many different regions on the scalp," explained Geraldine Dawson, chief science officer at the advocacy group Autism Speaks. "They then looked at the extent to which brain activity from one region was synchronized with brain activity from another region," a phenomenon known as "EEG coherence," said Dawson, who was not involved in the research.

...

The research was conducted at Boston Children's Hospital and was published online June 25 in the journal BMC Medicine.

The use of EEG-based testing may help diagnose autism in children and may improve early detection in infants, leading to more effective treatments and coping strategies, the researchers said.

The New York Times reports on the aftermath of the freezer failure, citing the example of a deceased ASD person whose brain was part of the collection.

Clare True’s was one of 150 specimens stored in a Harvard brain bank that was ruined because of a freezer failure, doctors acknowledged this month. The loss, while a setback for scientists studying disorders like Huntington’s disease,Alzheimer’s and schizophrenia, especially mortified those working on autism, for it exposed what is emerging as the largest obstacle to progress: the shortage of high-quality autopsied brains from young people with a well-documented medical history.

The malfunction reduced by a third Harvard’s frozen autism collection, the world’s largest. A bank maintained by the University of Maryland has 52, and there are smaller collections elsewhere. Altogether there are precious few, given escalating research demands. The loss at the Harvard Brain Tissue Resource Center makes donations from parents like the Trues only more urgent.

“There’s just no question that human tissue is the gold standard for research, said Dr. Gerald D. Fischbach, a professor emeritus at Columbia and director of life sciences at theSimons Foundation, which promotes autism research. “You absolutely need it to answer some very basic questions.”
The Harvard fiasco, first reported by The Boston Globe, has accelerated efforts by advocacy groups to reach out to families who might donate, said Alison Singer, president of the Autism Science Foundation. “I made calls as soon as I heard what happened,” she said.

Geraldine Dawson, chief science officer at Autism Speaks — the group that administers the autism brain donations at the Harvard bank — and a professor of psychiatry at the University of North Carolina, said, “This is indeed a setback, but it has motivated us more than ever to rebuild this precious resource.”

Hearing on Seclusion and Restraint

Previous posts have discussed seclusion and restraint. For the first time this year, Congress is taking up the issue. A message from the Council of Parent Attorneys and Advocates:

COMMITTEE ON HEALTH, EDUCATION, LABOR AND PENSIONS

HEARING NOTICE

** Please note the time change. ** 

Title: Beyond Seclusion and Restraint: Creating Positive Learning Environments for All Students
Date: Thursday, June 28, 2012
Time: 9:15 a.m.
Place: SD-106 (Dirksen Senate Office Building)
Witnesses
Dr. Daniel Crimmins , Director, Center for Leadership in Disability, Georgia State University, Atlanta, Georgia
Ms. Cyndi Pitonyak , Coordinator of Positive Behavioral Interventions and Supports, Montgomery County Public Schools, Christiansburg, Virginia
Dr. Michael George , Director, Centennial School, Bethlehem, Pennsylvania
Ms. Deborah (Debbie) Jackson , parent, Easton, Pennsylvania 

RAISE YOUR VOICE in Congress
Let Congress know that now is the time to pass federal legislation that provides protections for every child in school. Even if you have told them before, tell them again – and urge everyone you know to do the same! COPAA, along with many other school, parent, and national advocacy organizations has been actively working towards the passage of federal legislation that raises the bar of protection and safety in schools for all students. We will not rest until all students are safe in the schoolhouse.
We need a powerful and escalating collective voice to insist that Congress pass federal legislation without delay.
Senator Tom Harkin (Chair, Health Education Labor and Pension Committee) introduced S. 2020 the Keeping All Students Safe Act to protect students from dangerous restraint and seclusion on December 16, 2011. A bipartisan hearing “Beyond Seclusion and Restraint: Creating Positive Learning Environments for All Students” cosponsored by Senators Harkin and Enzi is scheduled for June 28th
Representative George Miller (Ranking Member, House Education and Workforce Committee) introduced H.R. 1381, the Keeping All Students Safe Act in the House on April 6, 2011. The bill currently has bipartisan support, thanks to Rep. Gregg Harper, with 42 cosponsors.
We sincerely thank Rep. Miller and Senator Harkin for their staunch and continued leadership on this critical issue.

The Keeping All Students Safe Act will promote a shift toward preventing problematic behavior through the use of de-escalation techniques, conflict management and evidence-based positive behavioral interventions and supports. This shift will help school personnel understand the needs of their students and safely address the source of challenging behaviors – a better result for everyone in the classroom. In many cases, the use of positive supports and interventions greatly diminishes and even eliminates the need to use restraint and seclusion. For example, the Centennial School in Pennsylvania, which serves children in 35 school districts, has cut the use of restraint and seclusion from well over 1,000 occurrences per year to less than ten through the use of positive supports. Reports and studies have also shown that students and staff are safer when positive interventions and supports, rather than restraint and seclusion, are used in schools. Worker’s Compensation costs even decrease significantly.
Other critical provisions of the bill include:

• Ensure the safety of all students and school personnel.
• Promote positive school culture and climate.
• Protect students from being locked in rooms or spaces from which they cannot exit.
• Promote of effective intervention and prevention practices, emphasize training, de-escalation, conflict management, and evidence-based practices shown to be effective in prevention.
• Restrict physical restraint to emergencies posing a serious threat of physical harm to self or others.
• Prohibit use of these dangerous practices to punish children, coerce compliance, for behavioral infractions, or as a substitute for positive behavioral support or proper educational programming.
• Prohibit the use when less restrictive measures would be effective in stopping the threat of harm.
• Require that the imposition end when the emergency ends.
• Ban restraints that are life threatening (including those that interfere with breathing), mechanical and chemical restraints, aversives that threaten health or safety, and restraints that interfere with the ability to communicate or which would harm a child.
• Require that parental notification occur within 24 hours and require staff and family to debrief so as to prevent use in the future.
• Require that states collect data, make it available to members of the public, and use the data to minimize further use.
• Protect teachers, staff, and parents from retaliation when they report violations of the law.
• Prohibit including restraint as a planned intervention in Individual Educational Programs or other individualized planning documents. (see COPAA Document on the critical importance of this provision here).
• Preserve existing rights under state and federal law and regulation.

Existing laws alone have not protected students against such abuse and injury, though many do offer important protections. Creating a national floor of protection will ensure that children are protected in every state.
Join us today in urging your elected officials to co-sponsor and pass H.R. 1381 and S. 2020. Email your two Senators and Congressional Representative and ask them to COSPONSOR and pass the Keeping All Students Safe Act. Ask your friends, family members, fellow advocates, and colleagues to do the same. 

HOW TO CONTACT CONGRESS
Visit www.senate.gov to find out the name of your US Senators and www.house.gov to find your Representative.
Dial the Capitol Switchboard at 202-224-3121 and ask for the office of your Senators and Representative
Identify yourself as a constituent and the organization that you represent (if any)
Give them your message, then pass this alert along to others!
Message: “I am calling to ask Senator/Representative _________ to move legislation to limit restraint and end the use of seclusion in schools. Restraint should only be used in emergencies threatening the physical safety of the student or others. The Keeping All Students Safe Act will create a baseline of protections to ensure the safety of all students and school personnel. I urge Sen./Rep.__________ to address this national problem and move the Keeping All Students Safe Act now.”
Please, send the email or call this week. Our children’s lives depend on it

A Legal Struggle for Coverage in New Jersey

The Newark Star-Ledger reports on a New Jersey family that tried to get its insurer to pay for ABA. Despite a state supreme court ruling and a statutory mandate, it was a struggle:

The family spent their savings and mortgaged the house to pay for years of behavioral therapy for their son Matthew, 7, after he was diagnosed with a form of autism as a toddler. And then they shelled out thousands in legal fees in a 3½-year battle to convince the state health benefits plan and insurer Horizon Blue Cross Blue Shield of New Jersey to cover it.

The fight ended last month when the insurer mailed a check for $97,088.45. But the couple says the experience shows how hard it is to get coverage for children with autism and other developmental disabilities — despite the court ruling and a 2010 law mandating it for all state-run and state-licensed insurers. "The problem with insurance companies is they make it so challenging to file claims," said Meredith Blitz-Goldstein, an oral surgeon who works for the state-run New Jersey Dental School. "A lot of parents don’t know how to get through the system, and I think that’s how Horizon likes it."

TRICARE Hearing

Previous posts have discussed TRICARE. On Thursday, the Personnel Subcommittee of the Senate Armed Services Committee held a hearing.Autism Speaks reports:

WASHINGTON, DC -- A Senate Armed Services subcommittee sharply questioned representatives from the Department of Defense (DoD) today on why they offer limited autism insurance benefits to military families, particularly in light of the federal government's decision to begin coverage for the nation's 8 million civilian employees, retirees and dependents. Autism Speaks Chief Science Officer Geraldine Dawson (left, with Sen. Kirsten Gillibrand) testified at the Subcommittee on Personnel that the DoD's exclusion of Applied Behavior Analysis (ABA) from basic TRICARE coverage on the basis that it was educational rather than medical relied on outdated and incomplete research. She said what limited ABA coverage the DoD does offer is restricted to active duty members and falls short in providing a sufficient level of coverage.

Links to prepared statements and the archived webcast are here.

Training for Los Angeles Educators

A press release from the Center for Autism and Related Disorders:

The Los Angeles Unified School District (LAUSD), the second largest school district in the nation, has selected the Center for Autism and Related Disorders’ CARD eLearning™ program to provide the district with intense training in evidence-based principles of behavioral health treatment for individuals with autism spectrum disorders (ASD). Over 6,000 LAUSD teachers and support staff will participate in the training.

The Center for Autism and Related Disorders, Inc. (CARD) is the world’s largest provider of state-of-the-art, early intensive behavioral intervention for individuals with autism spectrum disorders. In addition to providing treatment for thousands of children worldwide, CARD develops and utilizes technology to increase access to training for professionals who work with individuals who have been diagnosed with ASD. The CARD eLearning™ program (http://www.cardelearning.com) trains educators and other professionals in the principles of applied behavior analysis (ABA), which has been empirically proven to be the most effective treatment for individuals with ASD and is recommended by the American Academy of Pediatrics and the U.S. Surgeon General.

CARD eLearning™ is a 20-hour online training course designed to facilitate effective intervention for children with autism spectrum disorders by equipping users with foundational knowledge in ABA. The training consists of nine video-based training modules which feature online note taking, quizzes, a final exam, and a certificate of course completion.