Nebraska Mandate to Become Law

A press release from Nebraska Governor Dave Heineman:

 Gov. Dave Heineman is expected to sign LB 254 into law on Monday. As a result of this law, some health insurance plans in Nebraska will provide coverage for screening, diagnosis and treatment of autism spectrum disorder in a child until the insured child is 21 years old.

“I’m looking forward to signing this autism bill into law,” said Gov. Heineman. “I will be signing this bill on behalf of families who meet the challenges of autism every day.”

The Governor will hold a public bill signing news conference on Monday, April 21 with autism advocates. The autism bill was sponsored by State Sen. Colby Coash of Lincoln, and had the backing of many autism advocacy groups and families.

“I care about this issue because I have seen the impact that this treatment can have on the future of a child with autism,” said State Sen. Coash. “Positive things can happen when they receive life-changing treatment. These families are strong willed and they never gave up on the bill, so I wouldn’t either. Today is a special day.”

One of the autism advocates is Vicki Depenbusch of Lincoln, who is the mother of an autistic son, Jacob. Governor Heineman met Jacob at his parent teacher conference held in 2010. For the last 4 years, the two have communicated regularly and attended events together. Governor Heineman appreciates his friendship with Jacob, who calls himself the “Governor’s Buddy.”
“This is a great day for Autism families in Nebraska,” said Depenbusch. “It gives us hope that our children will be the best citizens that they can be.”

The insurance coverage includes behavioral health treatment, such as applied behavior analysis, for autism. This type of treatment will be limited to 25 hours per week and the insurer will be able to review the treatment once every six months. 

Certain insurance plans will be exempt from providing the autism requirement, according to LB 254. Those include health plans sold in the individual or small group federally facilitated marketplace under the federal Affordable Care Act. Also, Nebraska is preempted from mandating coverage on plans governed by the federal Employee Retirement Income Security Act of 1974 (ERISA). Most private employer sponsored plans are ERISA plans.  

ERISA Suit Against Boeing

Autism Speaks reports on a suit in US District Court in Seattle.

Aerospace giant Boeing has been hit with a complaint in federal court by its Washington state employees who claim the company's denial of insurance coverage of applied behavior analysis (ABA) for their children with autism violates the federal Mental Health Parity Act. Filed by two families whose sons have autism, "C.S." and "D.Z.", the suit seeks certification as a class action on behalf of Boeing's 81,000 Washington-based employees.

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The case has added significance because Boeing self-insures its employee health plan and therefore is regulated under federal ERISA law which is immune from state autism insurance reform laws, such as the law in its headquarters state of Illinois. The suit was filed by Seattle attorneys Ele Hamburger and Richard Spoonemore who have been winning a series of similar federal class action suits in Washington over ABA denials. The complaint alleges Boeing's denial of ABA benefits violates the 2008 Wellstone Domenici Mental Health Parity and Addiction Equity Act as well as its fiduciary responsibilities under ERISA.

Boeing does not expressly exclude ABA coverage in its health plan, but rather has its claims administrators exclude all coverage of ABA therapy through internal policies and restricted provider networks, the complaint alleges.

Mental Health Parity Regs in California

A release from California's Department of Insurance:

New mental health parity regulations have been approved by the Office of Administrative Law. These regulations drafted and proposed by the California Department of Insurance make sure insurance companies cover medically necessary treatment for children and individuals with autism.

"Approval of the mental health parity regulation will help end improper insurer delays and denials of medically necessary treatments for autistic individuals," said Insurance Commissioner Dave Jones. "This regulation provides clear guidance to the industry, stakeholders and consumers on the requirements of the Mental Health Parity Act from 1999."

Prior to these new regulations insurers were able to delay or deny medically necessary treatment for individuals with autism. The regulations further define the circumstances in which insurers must cover behavioral health treatments for autism. The regulations interpret and make specific the Mental Health Parity Act and gives more detailed guidance regarding the scope of the Act's provisions as they relate to autism treatment.

The Initial Statement of Reasons
Mental Health Parity Regulations

At California Healthline, David Gorn writes:

"We have all had frustration with the denials and delays," said Julie Kornack, senior public policy analyst at the Center for Autism and Related Disorders in Tarzana. "This really is making the state law and making the public policy clear."

With clear policy comes more certainty of coverage, she said. "Our hope is, [insurers] will see the laws are in place to ensure coverage."

According to advocates and officials at the Department of Insurance, delays often have come in the demand for more testing, particularly IQ testing.

"That practice creates significant delays," said Kristin Jacobson, president of Autism Deserves Equal Coverage, an advocacy group based in Burlingame. "It's an unnecessary test and it's irrelevant to needing treatment."

Ranking Medicaid Services

From United Cerebral Palsy:

Every year since 2006, United Cerebral Palsy (UCP) — an international advocate, educating and providing support services for children and adults with a spectrum of disabilities through an affiliate network– produces The Case for Inclusion, an annual ranking of how well state Medicaid programs serve Americans with intellectual and developmental disabilities (ID/DD). Individuals with ID/DD, including the aging, want and deserve the same freedoms and quality of life as all Americans.

Highlights:

The Best Performing States

1. Arizona
2. Michigan
3. Hawaii
4. Georgia
5. New York
6. South Carolina
7. Maine
8. Massachusetts
9. Ohio
10. Missouri

The Worst Performing States

42. Iowa
43. Utah
44. Illinois
45. Arkansas
46. Indiana
47. Tennessee
48. Oklahoma
49. Virginia
50. Texas
51. Mississippi

Facts about the Best Performing States

1. Top Performers are both big and small states in population – “big” population states include New York (3rd biggest) and Ohio (#7), Michigan (#8) and Georgia (#9) as well as “small” population states include Hawaii (#41) and Maine (#40).
2. Top Performers are both rich and poorer states in terms of median family income – “rich” states include Hawaii (9th richest) and Massachusetts (#5), and less affluent states include Arizona (#31), Georgia (#40), Michigan (#32), and South Carolina (#47).
3. Top Performers are high tax and low tax burden states – “high tax burden” states include Massachusetts (#10) and New York (#1) as well as “low tax burden” states include Arizona (#35), South Carolina (#42) and Georgia (#36).
4. Top Performers are big and low spending per person, served through the Home and Community Based Services – “big spender” states are New York (#7) and Maine (#6) and “low spender” states are Arizona (#49), Georgia (#40), and South Carolina (#48).

A Struggle in Michigan

Despite Michigan's insurance mandate, many families in the state still struggle for services.  In Grand Rapids, WXMI reports:

Hospitalization

In the Journal of Autism and Developmental Disorders, Aaron Nayfack and colleagues have an article titled "Hospitalizations of Children with Autism Increased from 1999 to 2009."

The abstract:

We performed a retrospective analysis of hospital discharges for children with autism, in comparison to children with cerebral palsy, Down syndrome, mental retardation/intellectual disability, and the general population. Hospitalizations for autism increased nearly threefold over 10 years, especially at the oldest ages, while hospitalizations for the other groups did not change. Leading discharge diagnoses for each age group in children with autism included mental health and nervous system disorders. Older age, Caucasian ethnicity, and living in a region with a high number of pediatric beds predicted hospitalizations associated with mental health diagnoses. These findings underscore the need for comprehensive clinical services that address the complex needs of children with autism to prevent costly hospitalizations.

From the discussion section:

This current study reported factors that placed an individual with autism at increased risk for hospitalization, but does not explain why these hospitalizations increased during the study period. One possibility is the rising prevalence of autism has been met by a decline in financial support for outpatient and community resources. In this scenario, overwhelmed parents, schools, and community providers of mental health resources may have been unable to meet the needs of these patients and this failure to treat adequately in the outpatient sector may have led to a direct increase in hospitalizations. A recent study by Mandell et al. (2012) adds evidence to support this argument. They found that the enhanced provision of respite care to caregivers
of children with autism led directly to a decrease in hospitalization.

 Mandell, D. S., Xie, M., Morales, K. H., Lawler, L., McCarthy, M., & Marcus, S. C. (2012). The interplay of outpatient services and psychiatric hospitalization among medicaid-enrolled children with autism spectrum disorders. Archives of Pediatric and Adolscent Medicine, 166(1), 68–73.

Research on Screening and Diagnosis

Karen Weintraub writes for the Connecticut Health I-Team:

Although the average age of diagnosis is nearly four-and-a-half, diagnoses can reliably be made around age 2, according to Amy Daniels, of the advocacy and science group Autism Speaks, which was founded by longtime Fairfield residents Bob and Suzanne Wright.

In a study, Daniels found gaps in the current system, which relies largely on pediatricians to flag kids for later diagnosis and treatment.

“There’s a lot of questions about what happens to these kids after they screen positive,” said Daniels.
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Obviously a genetic screen or simple blood or urine test would be ideal, but that’s unlikely to ever be possible, researchers said. Autism has been linked to at least 500 genes so far, and each child’s genetic pattern is distinct. Researchers at Harvard University used a 55-gene panel to try to predict autism – but they were right less than 70 percent of the time, and were even less accurate among girls, according to their 2012 study.
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Another group of researchers led by Rebecca Landa, head of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, found that children diagnosed with autism didn’t have good head control in infancy – lagging their heads behind when they were pulled to a sitting position, according to a 2012 study.

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In a 2012 study, [Stephen] Sheinkopf showed that babies later diagnosed with autism had unusually high-pitched cries and also something called dysphonation – essentially a noisy signal in their cries. The differences were too subtle to be noticed without audio equipment, he said, so parents won’t be able to detect this on their own.

He’s now working to standardize the analysis, but isn’t sure crying will ever be a precise enough indicator to be the basis for a diagnosis.

“It’s unclear whether it’s going to be something specific or more generally indicative of risk,” he said.