IDEA Full Funding Act 2014

A release from Rep. Tim Walz (D-MN):

Today Congressmen Chris Van Hollen (D-MD), David McKinley (R-WV), Tim Walz (D-MN), Chris Gibson (R-NY), Jared Huffman (D-CA), and David Reichert (R-WA) announced introduction of the bipartisan IDEA Full Funding Act. In 1975, Congress took the critical step of passing the Individuals with Disabilities Education Act (IDEA) and guaranteeing that every child with disabilities would have the opportunity to reach his or her full potential. At that time, the federal government committed to pay 40 percent of the average per pupil expenditure for special education. However, that pledge has never been met, and current funding is at just 15.3 percent. The IDEA Full Funding Act would require regular increases in IDEA spending to finally meet our commitment to America’s children and schools.

The proposal has come up before. A previous version had the acronym Everyone Deserves UnConditional Access to Education (EDUCATE) Act.

Easter Seals has a chart on funding of disability programs:

Utah Mandate Changes and Advances

KSTU in Salt Lake City reports:

Insurance companies may soon be forced to recognize autism spectrum disorders and treat them.

A bill that would do just that and help thousands of Utah children passed a major hurdle on Capitol Hill Friday.

“What we did in the compromise is identify that group of children who are most vulnerable who would be helped by this particular legislation,” said the bill’s sponsor, Senator Brian Shiozawa of Cottonwood Heights.

Autistic children between ages 2 and 9 would have insurance coverage under Senate Bill 57.
“It doesn’t serve all of the families that we originally wanted to,” said Christine Passey, Vice-President of the Utah Autism Coalition. “But as legislation goes, we work through the process as we go and this is an amazing step, this is an amazing bill, and it was great.”

The legislation passed out of the House rules committee and insurance companies who once fought the bill, concerned that premiums would spike, have now agreed to provide 600 hours of therapy a year starting in 2016. It was a hard concession, the bill’s sponsor said, but a necessary one to get insurance providers on board.

“This agreement was vital for the House rules to also agree to this and take it forward,” Sen. Shiozawa said.

“We actually got out of the committee unanimously,” Passey said. “ I don’t think there’s words to describe what that was like for the families that have been working so hard.”

South Dakota Mandate Setback

The Sioux Falls Argus Leader reports that a South Dakota autism insurance mandate bill had a setback in a state senate committee:

Rep. Scott Munsterman’s bill sought to require some health care plans to cover ABA therapy and other autism treatments. From 60,000 to 90,000 citizens would be affected — primarily those who get their coverage from larger employers, and those with smaller plans that have been grandfathered in under the federal Affordable Care Act. Small business insurance plans and nongrandfathered plans on the marketplace would not be affected.

Munsterman originally proposed requiring all plans to cover ABA therapy. But under the Affordable Care Act, states that impose new coverage mandates on insurance companies are required to pay for that cost. To dodge a budget battle and weaken opposition from Gov. Dennis Daugaard, Munsterman narrowed the bill to apply only to those plans the state wouldn’t have to pay for.

But insurance companies said they shouldn’t have to pay for such expensive treatment, which they said would force them to pass costs on to customers in the form of higher premiums.

Wellmark previously estimated it might cost as much as $7 per member per year more to cover ABA treatment.

The Senate Commerce and Energy Committee voted 5-2 to kill the bill, with Sens. Ryan Maher and Angie Buhl O’Donnell opposed.

But supporters aren’t giving up. Munsterman is looking at ways to bypass the Senate committee, which could include sticking the autism language into another bill. That showdown probably will come on Monday.

Study: DSM-5 Will Reduce Autism Diagnoses

Many posts have discussed the potential impact of DSM-5. Kristine M. Kulage, Arlene M. Smaldone, Elizabeth G. Cohn have an article in the February 2014 Journal of Autism and Developmental Disorders titled "How Will DSM-5 Affect Autism Diagnosis? A Systematic Literature Review and Meta-analysis."  The abstract:

We conducted a systematic review and meta-analysis to determine the effect of changes to the Diagnostic and Statistical Manual (DSM)-5 on autism spectrum disorder (ASD) and explore policy implications. We identified 418 studies; 14 met inclusion criteria. Studies consistently reported decreases in ASD diagnosis (range 7.3–68.4 %) using DSM-5 criteria. There were statistically significant pooled decreases in ASD [31 % (20–44), p = 0.006] and DSM-IV-TR subgroups of Autistic disorder [22 % (16–29), p < 0.001] and pervasive developmental disorder-not otherwise specified (PDD-NOS) [70 % (55–82), p = 0.01]; however, Asperger’s disorder pooled decrease was not significant [70 % (26–94), p = 0.38]. DSM-5 will likely decrease the number of individuals diagnosed with ASD, particularly the PDD-NOS subgroup. Research is needed on policies regarding services for individuals lacking diagnosis but requiring assistance.

Autism Policy in California: Forward and Back

In Sacramento, KXTV reports on a hearing of California's Senate Select Committee on Autism and Related Disorders concerning the state's insurance mandate.

More than two years after the new law passed, California legislators met Tuesday for a closer look at their policies with a focus on one particular unintended consequence. While access to the treatment has significantly expanded, some parents have incurred punishing costs for therapy that can be as much as 40 hours per week. That can mean thousands of dollars each year to pay their share of the treatments.

"They can't afford it because of the co-payments or they also can't afford it because of the deductibles," [autism mother Michelle] Heid said.

"The co-pay issue is a real issue as is the deductible issue, and that's one of the things we're going to examine in depth," Senator Darrell Steinberg said just before chairing Tuesday's committee hearing.

• Hearing materials here.
• Hearing agenda here. 

At California Healthline, David Gorn writes: of an Autism Society of California survey:

According to the survey, almost 20% of families receiving autism therapy treatment at regional centers have cancelled the health insurance policies of their children, in large part because they can't afford the co-pays and deductibles.
...
The language shifting co-pays and deductibles [from regional centers] to families was included in the budget trailer bill last year but should be removed now, said Marcia Eichelberger, president of the Autism Society of California.

...

Ironically, the money-saving move actually might be costing the state money, Eichelberger said, because the regional centers still need to treat the children who are being taken off private insurance. Centers have to pay the full cost of care if a child is moved from private coverage to Medi-Cal, Eichelberger said.
...
Kristin Jacobson, president of Autism Deserves Equal Coverage, said the survey shows the law requiring insurers to cover autism therapy -- SB 946 by Sen. Darrell Steinberg (D-Sacramento) -- is working. The problem, she said, is that the survey shows a high level of dissatisfaction that correlates with the percentage of people affected by the new co-pay/deductible rule.
...
"About 30% of them don't know about the law," she said. "It's great that 57% of those eligible are getting coverage, but that means 43% aren't getting approved, and the reasons for denial are inappropriate."

Vaccine Promotion May Backfire

Political scientist Brendan Nyhan is lead author of  "Effective Messages in Vaccine Promotion: A Randomized Trial," published online in Pediatrics on March 3.  The abstract:

OBJECTIVES: To test the effectiveness of messages designed to reduce vaccine misperceptions and increase vaccination rates for measles-mumps-rubella (MMR).

METHODS: A Web-based nationally representative 2-wave survey experiment was conducted with 1759 parents age 18 years and older residing in the United States who have children in their household age 17 years or younger (conducted June–July 2011). Parents were randomly assigned to receive 1 of 4 interventions: (1) information explaining the lack of evidence that MMR causes autism from the Centers for Disease Control and Prevention; (2) textual information about the dangers of the diseases prevented by MMR from the Vaccine Information Statement; (3) images of children who have diseases prevented by the MMR vaccine; (4) a dramatic narrative about an infant who almost died of measles from a Centers for Disease Control and Prevention fact sheet; or to a control group.

RESULTS: None of the interventions increased parental intent to vaccinate a future child. Refuting claims of an MMR/autism link successfully reduced misperceptions that vaccines cause autism but nonetheless decreased intent to vaccinate among parents who had the least favorable vaccine attitudes. In addition, images of sick children increased expressed belief in a vaccine/autism link and a dramatic narrative about an infant in danger increased self-reported belief in serious vaccine side effects.

CONCLUSIONS: Current public health communications about vaccines may not be effective. For some parents, they may actually increase misperceptions or reduce vaccination intention. Attempts to increase concerns about communicable diseases or correct false claims about vaccines may be especially likely to be counterproductive. More study of pro-vaccine messaging is needed.  [emphasis added]

Capitalism Meets Autism

CNBC reports:

Private equity and venture capital firms TPG Biotech, Shore Capital Partners, Bay City Capital, Great Point Partners and Google Ventures, plus hedge fund Scopia Capital Management are among the investors slated to attend the 2014 Autism Investment Conference next week in San Francisco.

The event is organized by Autism Speaks in partnership with Google, which is offering a separate workshop for entrepreneurs doing autism-related work.

"While autism has always been part of our population, as our economy has shifted from agrarian work, where everyone could contribute, to urban, social workplaces, this group has moved backward due their social disability. As an investor, I see the opportunity to capitalize on the talents and availability of this group of workers," said Brian Jacobs, co-founder of venture capital firm Emergence Capital Partners.

One area where autistic individuals excel, Jacobs says, is software testing. He expects to back start-ups in the sector as an angel investor. Jacobs' initial interest comes from his son, who has Asperger's syndrome, a type of autism that allows relatively high function.

...

Examples include Great Point's investment in Pacific Child & Family Associates, a provider of behavior analysis services to children with autism and other related disorders; Trimaran Capital Partners' investment in Educational Services of America, which offers day school services for children with special needs; and Coppermine Capital's bet on City Pro Group, a health-care services business coordinating care to young children with developmental delays and autism in the New York area.

It is great that businesses are talking about employing people with autism.  It's also great that they see profit in the move.  Self-interest is much more reliable than benevolence.  Still, some words of caution are in order.

Beware the Rain Man Myth. Businesses should not equate ASD employment with detail jobs such as software testing. Some people on the spectrum do indeed have an terrific eye for detail, but others do not. Conversely, many ASD people have stereotype-defying talents in art, writing, and other fields.

If businesses are searching narrowly for a Raymond Babbitt, they might miss out on a Temple Grandin or John Elder Robison.