Interview with a Military Mom

A number of posts have dealt with active-duty military members and veterans who have family members with ASD.  Autism Live interviews Shannon Strayhorn:

Aging Parents

The Sacramento Bee reports on aging parents of people with developmental disabilities.

Across the country, according to U.S. Census figures, 20 percent of adults below age 65 have developmental or physical disabilities – and almost 70 percent of the families of special-needs adults in a recent MetLife survey said they worried about their offspring's future.

The Alta California Regional Center, which serves 18,250 people with developmental disabilities in 10 counties, has about 5,000 adult clients who still live at home with their parents, just as Jessica and Lori do.

"And every one of those clients will age," said Phil Bonnet, the regional center's executive director. "People who grew up in our system are now middle-aged, and their parents are older."

As a result, said the executive director of Sacramento's Resources for Independent Living, Frances Gracechild: "We have this phenomenon of aging parents with increasing need for support themselves, and they're still taking care of their grown developmentally disabled children.

"It's quite a burden to meet when you're facing your 70s."

From the MetLife study:

Read more here: http://www.sacbee.com/2013/03/03/5231706/aging-parents-worry-about-adult.html#storylink=cpy

"Expensive Students" in Minnesota

The Minneapolis Star Tribune reports on the rising cost of special education in Minnesota, using an autistic boy as its peg:

Every school day, the boy, who has autism and doesn’t speak, came to the barren cell built only for him. Two adults spent all their time teaching him to communicate.

The price? $153,000 for a year of instruction, nearly 20 times what’s spent on a student without special needs. “The costs are staggering,” said Connie Hayes, superintendent of the public school district that built the classroom.

A decade ago, the boy would have been institutionalized. Today, he’s sent to public school. His education in Room 112 tells a larger story of a growing predicament confronting schools across Minnesota.

A sharp rise in students diagnosed with major disabilities is forcing many schools to take difficult and at times divisive new steps to tailor classrooms to the disabled students’ needs, no matter how expensive that gets.

Even as overall school enrollment declined over the past decade, the number of disabled students rose 14 percent, reaching 128,000. That includes a fivefold increase in students with autism.

Many of the state’s most psychologically troubled students also are being sent to school settings for the first time as mental health programs that once served them have been cut back or eliminated.

By law, state and federal budgets are supposed to cover about 90 percent of the cost of educating students with special needs.

But they are falling short, shifting much of the cost to local school districts. Spending on special education is soaring — it has risen 70 percent in Minnesota over the past decade to $1.8 billion this school year

The story goes on to tell the story of John Glenn Middle School, which spent $88,000 to build a classroom for one boy with ASD, ADHD and severe behavior problems.   In a telling phrase, the paper calls him "one of the most expensive students in Minnesota."  The cost of special education creates conflicts, pitting ASD students and their parents against school districts and parents of nondisabled students on the other.

In other contexts as well, ASD people bear the label of "expensive."

• From a report on insurance in Oregon: "But the problem for the company now is that if other insurers don't also start offering coverage, Kaiser could end up attracting lots of expensive new customers with autism. That would drive up their costs."
• From a report on Montana: "He’s become the most expensive state client using a state program for individuals with developmental disabilities that provides community-based services to people.

TV Report on Nebraska Mandate Bill

KHAS in Hastings, Nebraska, reports on mandate legislation in Nebraska:

 

Utah Mandate Bites the Dust, CA Moves on Affordable Care Act

Shortly after the Georgia legislature stalled a mandate bill, a similar bill in Utah bit the dust.  The Salt Lake Tribune reports:

A bill to mandate insurance coverage for autism treatment received a drastic makeover Thursday in the Utah Senate, disappointing hundreds of parents who hoped they could soon afford the necessary therapies for their children.

In its original form, SB55 would have required insurance coverage for children diagnosed with autism spectrum disorder. About 18,000 such youth live in Utah, said the bill’s sponsor, Sen. Brian Shiozawa, R-Cottonwood Heights.

Realizing the measure lacked the votes to pass either legislative chamber, Shiozawa pared it back Thursday, nixing the insurance and confining it to expansion of a pilot program enacted last year. He is asking to double participants to 500 and raise the age limit to seven. The current pilot program tops out at age six.

"It’s not my first choice," Shiozawa said of the substitute bill. "After conferring with House and Senate leadership — I don’t have the support of the insurance industry, and I frankly don’t have the votes for the bill in its original form."

AP reports on California:

 California lawmakers took the first step Thursday toward passing new consumer protections, such as guaranteeing coverage even with pre-existing conditions, under the federal health care overhaul.

Democrats in both houses of the Legislature passed bills dealing with individual insurance regulations that would prevent insurers from discriminating and overcharging customers.
...
The measures essentially add the Affordable Care Act to California law so state agencies have the power to enforce and regulate new individual insurance rules.

If you have a child who gets diagnosed with autism or born prematurely, you can get health insurance." Pan told lawmakers in the Assembly.

Marijuana in Oregon

In Eugene, Oregon, KVAL reports on the use of medical marijuana to treat a boy with autism and other conditions.

CA Insurers Not Following Mandate Law

Previous posts have looked at California's mandate. Alan Zarembo reports in The Los Angeles Times:

Insurers have been skirting their obligation under recently enacted state law to provide costly behavioral therapies for autism, according to the Department of Insurance, which is proposing emergency regulations aimed at enforcing the law.

In July, California joined more than two dozen other states in requiring private insurers to cover such treatments when medically necessary.

But state officials said they have received dozens of formal complaints that insurers have been delaying and denying coverage by imposing limits on how much therapy a child can receive and who can provide it, and in some cases by requiring extensive cognitive testing before treatment can begin.

The emergency regulations stipulate that those are not valid justifications for denying treatment. Officials said they planned to file the proposed rules Thursday with the state Office of Administrative Law, which will decide in March whether to put them into effect.

"Behavioral therapy is a medical treatment and has to be covered," Insurance Commissioner Dave Jones said in an interview.

The Four Kingdoms

NIMH director Thomas Insel writes:

In the spirit of mapping the autism landscape and finding some common ground, I suggest four perspectives that currently separate the communities interested in the autism spectrum. The language, assumptions, literature, and societies that have grown up around each of these perspectives are so distinct, they have begun to represent different countries or kingdoms. Each has its own truths. And each too often fails to understand or even recognize that their truths may not apply to all kingdoms.

Illness
Autism was first described as a developmental disorder by Leo Kanner, a child psychiatrist, in 1943. In the 70 years since, research on autism has largely focused on autism as an illness. The illness kingdom is largely populated by clinicians, researchers, parents, and some people with autism. They view autism as a brain disorder in which the language of medicine applies, with a focus on improving diagnosis and interventions, and cure as the ultimate goal.
...
Identity
Self-advocates with autism, like self-advocates in the deafness community, have replaced the medical model of illness with the language of diversity and identity. They, along with many in the educational and disability communities, view autism as a difference in need of accommodation, not a disorder in need of cure.
...
Injury
One of the more heated arguments surrounding autism has been on the purported role of vaccine injury as a cause. This kingdom was founded by parents who report marked regression after the 18-month vaccination series, when their previously interactive, communicative toddler withdraws and stops speaking.

... 

Insight
Just as scientists have studied blindness to understand the visual system, scientists in the kingdom of insight assume that the study of people with social and communication deficits is a remarkable opportunity to understand the social brain. This kingdom belongs to social neuroscientists, using tools from cognitive science, neuroimaging, and neuroanatomy.

A Story of Recovery

KTLA in Los Angeles reports on CARD and a story of autism recovery. (The station uses the less accurate term, "cure.")

Georgia Mandate Bill Stalls

As part of its series on autism, Atlanta's WXIA covers parents lobbying the Georgia Legislature

In the video, State Senator Renee Unterman ( Renee.Unterman@senate.ga.gov   ) says that she does not believe that the premium impact of the legislation would be only 32 cents a month.  (See here for the data.)



The effort fell short, as the station also reports:

Two key lawmakers said Monday that the bill requiring insurance coverage for autism would likely get shelved this legislative session. And according to Autism Speaks, the bill may not be taken up again until 2015. 

Publicly, the autism insurance bill had the enthusiastic backing of supporters from around Georgia, who rallied at the Capitol Monday to lobby for its passage. But as they swarmed the Capitol, the measure was getting treatment likely to kill it for the year.

"There are powers that be that don't want to see it moving," said Rep. Ben Harbin (R-Evans), sponsor of the bill known as Ava's Law.

"As far as for this session, it won't happen," said Rep. Richard Smith (R-Columbus), chairman of the House insurance committee. Smith all but sealed the bill's fate fate by assigning the bill to a study committee.

Smith says his hands were tied by a law passed in 2011. It requires that any bill with a new insurance mandate go to a committee called a mandate committee.

Unterman is on the mandate committee.

Nebraska Mandate Bill

KOLN-TV in Lincoln covers Nebraska mandate legislation, LB 505 by State Senator Colby Coash: 

Coash attempted the legislation in 2012, but it didn't pan out. Insurance companies were on the fence and their lobbyists for insurance companies raised concerns.

Those who oppose the bill say it's just too expensive and that insurance companies can now voluntarily cover these costs.

Insurance company Blue Cross and Blue Shield of Nebraska issued a statement to 10/11 about LB 505 saying, “We will continue to work with legislators and those in the community impacted by autism to help address concerns over coverage, while making sure there is a level playing field between all health insurance companies. Some requirements of the Affordable Care Act and state mandates may add complexity to LB505 and will likely need to be discussed and understood by all parties.”

If passed Nebraska would be the 33rd state to require such coverage. During the scheduled upcoming hearing, Senator Coash is expecting a little opposition, but he says in the long run this bill will save money.

Sen. Colby Coash said, "This is not going to break the bank for insurance companies. My experience has taught me that this kind of treatment is giving people with autism their life back.

It's that big of a deal."

The first hearing on LB505 is scheduled for Tuesday, Feb. 26, before the Senate Banking, Commerce and Insurance Committee.

Autism and the Final ACA Rules

A Thursday release from Autism Speaks:

The expanded access to health care promised through the Affordable Care Act (ACA) would fall short with autism under new federal regulations that fail to require every state to include coverage for behavioral health treatment as the law required, said Peter Bell, Autism Speaks' executive vice president for programs and services. Autism is the fastest growing developmental disability in the United States with an estimated 1 of every 88 children now diagnosed with an autism spectrum disorder.

Bell was responding to final rules made public yesterday by the U.S. Department of Health and Human Services (HHS) regarding the 10 "essential health benefits" every state must include in their new ACA health insurance marketplaces that start operation next year. Even though coverage for behavioral health treatment, including applied behavior analysis (ABA), was required by Congress, as many as 24 states continue to lack this coverage under the HHS regulations.

Among these states are Pennsylvania, Florida and Virginia which require the coverage by law for state-regulated health plans, but would not require it through their new ACA health plans. A total of 32 states have passed autism insurance reform laws requiring autism-related coverage in state-regulated health plans.

“Behavioral health treatment, including ABA, was specifically written into the law by Congress as an essential health benefit, yet that requirement seems to have disappeared from the new HHS regulations," said Bell. "On the other hand, we are encouraged that the flexible approach HHS has adopted could ultimately lead to more states including behavior treatment benefits for autism.

"The habilitative services category may offer a fallback. States that do not have an ABA benefit should step up – now – and determine that this vital coverage is part of their benchmark plan.” 

For instance, Ohio, which is not one of the 32 states to enact an autism insurance reform law, will be permitted to require the coverage in its ACA health insurance marketplace under an order signed in December by Gov. John Kasich. California, New York, Michigan, Delaware and Alaska, all of which passed their state laws after the ACA was enacted, also will be permitted to include behavioral health treatment in their ACA health plans.

WXIA and Ava's Law

The latest entry in WXIA's series on autism and the Georgia mandate bill, Ava's Law:

A Friday release from Autism Speaks:

Autism Speaks today endorsed SB.191, the Senate version of 'Ava's Law," which would require state-regulated health plans to cover autism-related therapies. The bill was introduced by Sen. John Albers (R-Roswell).

“"We commend Senator Albers for his leadership on this issue of critical concern tothousands of Georgia families,"” said Lorri Unumb, Esq., Autism Speaks vice president for state government affairs. “"Autism Speaks joins Georgia's autism community in calling on the legislature to pass SB.191 and join the growing majority of states, including Florida and South Carolina, that have taken steps to end healthcare discrimination against children with autism."”

Ava's Law would require up to $50,000 a year in coverage for behavior health treatment which is routinely denied by health insurers, even though evidence-based treatments have been endorsed by the American Academy of Pediatrics and the U.S. Surgeon General. Also it would require coverage for autism-related speech, occupational and physical therapy as well as pharmacy, psychological and psychiatric care. (A Fact Sheet on Ava's Law is here.)

A House version of the bill, (HB.309), has been introduced by Rep. Ben Harbin (R-Evans). In an interview with NBC 11, Home Depot Co-founder Bernie Marcus said Georgia Gov. Nathan Deal told him he would sign the bill if voted out of the Legislature.

The bill is named after Ava Bullard, whose mother Anna Bullard of Lyons, posted aYouTube video describing her family's experience raising a child with autism. Bullard and other Georgia advocates have helped rally support for the introduction of this year's bill. Georgia is one of just 18 states yet to enact autism insurance reform.

The bill would take effect 60 days after passage.