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Monday, November 20, 2017

Autism Society v. GOP Tax Bills

The Autism Society opposes the GOP tax bills:
On November 16, the House of Representatives passed its version of a tax bill. Now the Senate is finalizing its own version. Both bills are extremely damaging because they:
Pave the way for cutting Medicaid, Medicare, Supplemental Security Income, and other critical programs for people with disabilities in order to pay for the tax cuts later.
Increase the deficit significantly to provide tax cuts that disproportionately benefit the wealthiest Americans and corporations.

But the Senate bill is even worse. It also repeals the “individual mandate” for people to have health care coverage. If this happens, nearly 14 million people will lose health coverage and it will increase premiums for people buying insurance on the health insurance exchange by 10% per year. The individual mandate is a central part of the Affordable Care Act (ACA) which greatly benefits people with disabilities by eliminating pre-existing condition exclusions, banning annual and lifetime limits, prohibiting discrimination based on health status, and much more.

The Senate is scheduled to vote on its Tax Cuts and Jobs Act the week after Thanksgiving.
We must stop this very harmful and unpopular legislation NOW. TAKE ACTION
  • Call your Senators. Call the Capitol Switchboard number 202-224-3121 and ask for your Senators.
  • Attend a Town Hall Meeting.
  • Participate in a Tax Plan Rally Event.
  • I am a member of Autism Society of America.
  • Please vote NO on the Tax Cuts and Jobs Act.
  • We cannot afford these tax cuts that go mainly to the wealthiest Americans and large corporations.
  • Tax reform should not be rushed. People should have time to understand the bill and how they will be affected.

Sunday, November 19, 2017

Hollywood, Autism, and Self-Funded Insurance

In The Politics of Autism, I write:
Sixty-one percent of Americans with employer-sponsored health insurance are in a self-funded plan, in which the employer takes direct financial responsibility for enrollees’ medical claims. Employers that self-fund typically contract with an insurance company to run the plan. Workers then get cards that bear the name of the insurance company and often look just like those from a traditional plan, so many do not even know that they are in a self-funded plan. Most of the time, the distinction makes little difference -- unless the employees are seeking coverage for a family member with autism. The catch is that the state mandates do not apply to self-funded plans. A federal law (the Employee Retirement Income Security Act of 1974, or ERISA) exempts self-funded plans from most state insurance laws, including mandated benefits. When South Carolina passed its mandate, the Unumb family was in a self-funded plan, so Ryan could not benefit from Ryan’s Law. As lawyers, the Unumbs knew about this exception all along, but for many autism families in states with insurance mandates, it comes as an unpleasant surprise.
At Variety, Jessica Ritz writes that her family relies on a Writers Guild of America (WGA) health plan.
But for many families in the entertainment industry affected by autism, there’s a stinging irony. Our WGA health care plan doesn’t cover most of our son’s therapies. Those who create the characters and stories that help spread autism awareness are themselves often denied essential funds to help treat this very condition, leaving the burden of extensive intervention costs largely on our shoulders.

California Senate Bill 946, California’s Autism Insurance Mandate initially passed in the state legislature in 2011 and implemented in 2012, helped nudge the needle forward to add autism services to behavioral health insurance coverage in California, including Applied Behavioral Analysis (ABA) and other autism therapies. And yet the loopholes are many. The Writers’ Guild-Industry Health Fund is a “self-funded” entity, meaning it’s administered by a third party and therefore has discretion over what’s included in members’ Anthem Blue Cross plan.

We received a letter explaining the Fund “recognizes” SB 946, but the Health Fund Plan excludes ABA and other “Educational Therapy” treatments. File this discretionary decision under perfectly legal — and a deeply unfair policy that needs to be challenged. (Yet another item to add to the parents of special needs kids’ To Do lists, along with consulting with therapists, attorneys, and advocates.) When your own insurance plan falls short, the buck gets passed to overburdened public agencies, such as California Regional Center.

Saturday, November 18, 2017

Kevin and Avonte's Law Clears Senate Judiciary Committee

The Politics of Autism discusses the problem of wandering, which has been the topic of legislation before Congress.

On Thursday, the Senate Judiciary Committee reported S. 2070: Kevin and Avonte's Law of 2017.  Senator Charles Grassley (R-IA), chair of the committee and sponsor of the bill, said:
Today, we have Kevin and Avonte’s Law of 2017, S. 2070, on the agenda. I want to thank Senators Klobuchar, Tillis, Schumer, Burr, Durbin, and Coons for their cosponsorship of this measure, which last July passed the full Senate by voice vote.

The House passed a related companion bill in December, but we ran out of time before the 114th Congress adjourned to resolve differences between the two chambers’ versions. This year, however, Congressman Smith and I introduced the same bill text in both chambers on the same day.
Our bill would update and extend a Justice Department program known as the Missing Alzheimer’s Disease Patient Alert Program. That program reportedly had a high success rate in locating missing individuals who enrolled in it.

We’ve retitled the program and changed it to support not just people with dementia but also children with developmental disabilities. It allows Justice Department grants to be used for education programs to help prevent wandering by these individuals and for technology to reunite caregivers with missing family members.

For example, because police often are the first people to respond when a child goes missing, the bill will make resources available to equip first responders with the training necessary to better prevent and respond to these cases. These activities will help save lives and conserve police resources.

The measure’s entitled “Kevin and Avonte’s Law" in honor of two young, autistic boys who wandered away from their caretakers and drowned. One of the two, Kevin Curtis Wills, jumped into Raccoon River near his hometown in Jefferson, Iowa, at the age of nine. Research suggests that up to half of autistic children wander, and those who do are strongly attracted to bodies of water, often with similarly tragic results.

We’ve received endorsement letters from the Alzheimer’s Association, the National Center for Missing and Exploited Children, Autism Speaks, the Autism Safety Coalition, the Arc, and the National Down Syndrome Society, among many others. I seek unanimous consent to include those in the Record.

Friday, November 17, 2017

The Autism Treatment Market

The Politics of Autism includes an extensive discussion of insurance and the regulation of autism service providers.

Autism treatment is a business.  There are many good providers, with dedicated therapists who can help autistic people achieve remarkable outcomes. But there are a lot of substandard providers and outright scamsters, too.  It is extremely difficult for parents to find reliable, standardized information about providers and the quality of the services they offer.

A release from Marketdata:
Marketdata LLC, a leading independent market research publisher since 1979, has released a new study, a 50-page report entitled: The U.S. Autism Treatment Market . The study traces the market from 2009-2022 Forecast, examining programs and medications used to treat children with autism. This is a little-researched, but growth niche market.
According to Research Director, John LaRosa: “Applied behavior analysis (ABA) has become widely accepted among health care professionals and is used in many schools and autism treatment clinics. Occupational and speech therapy are also used.”
Major Findings:
Market Value… The U.S. autism treatment market was estimated to be valued at $1.85 billion as of 2016, growing to $1.87 billion in the current year. Marketdata forecasts 3.9% average yearly growth, to $2.23 billion by 2022. This could be conservative, as insurance coverage is improving.
ABA (applied behavioral analysis) programs are estimated to generate $1.07 billion in revenues this year, and prescription drugs for autism symptoms account for $800 million.
Patient Demographics…. Based on new government data that finds that 1 in 45 children in the United States, aged 3-17, have autism, Marketdata analysts estimate that there are 1.4 million children with autism. Another 700,000 adults have autism, having “aged out” of childrens’ programs. 81% of autistic children are male.
The total annual costs for children with ASD (autism spectrum disorder) in the United States were estimated to be between $11.5 billion and $60.9 billion -- a significant economic burden.
There are basically three types of ABA program providers: brick & mortar centers, community providers, and In-home therapists.
The “average” ABA center grosses about $821,000. Many are non-profit organizations. Many now have waiting lists and there is a shortage of qualified supervisors.
Insurance coverage is a problem, but the share of children with access to insurance coverage is expected to increase from the 36% level today. In addition, the number of self-funded private employers covering autism treatment continues to grow.
Venture capital firms are starting to take notice of investment opportunities in this market.
Data suggest that approximately 58 percent of patients with a diagnosis of childhood autism receive some type of pharmaceutical treatment. However, this segment of the market has been shrinking in value as concerns continue over side effects of drugs such as Risperdal. These drugs also face competition from cheaper generics, as patents have expired.
Nine large multi-site ABA program providers operate an estimated 296 brick and mortar centers and employ thousands of therapists. Together, they account for about $390 million in revenues—a 38% market share of ABA programs.

"Many autism treatment organizations, and some of the largest competitors, are located in California. This is due to the fact that funding for treatment programs has been in place there since the 1990s, prior to the insurance mandates that were later put into place.”, according to John LaRosa.
As for the last point, note that Lovaas worked at UCLA and many of his students work in the region.

Many self-advocate object to "economic cost" analysis, arguing that it treats autistic people as burdens rather than contributors to society.

Finally, note the emphasis on children.  Autistic youths grow into autistic adults, and they continue to need services.  We know a good deal less about the fate of autistic adults.

Thursday, November 16, 2017

Nominee to Head Special Education Office

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

From the White House:
From Johnny Collett of Kentucky, to be the Assistant Secretary of Education for Special Education and Rehabilitative Services. Mr. Collett is the Director of Special Education Outcomes at the Council of Chief State School Officers. In this role, he supports states in their work to raise expectations and improve outcomes for children and youth with disabilities. He previously served as Director of the Division of Learning Services and State Director of Special Education at the Kentucky Department of Education. In this role, he provided oversight to a division that included special education, as well as other program areas such as English Learners, gifted and talented, response to intervention, the Kentucky School for the Blind, and the Kentucky School for the Deaf. He also served on the board of directors of the National Association of State Directors of Special Education, serving a partial term as secretary-treasurer of the board. Mr. Collett also served in various other roles, including exceptional children consultant, assistant division director, and acting division director. Prior to working at the Kentucky Department of Education, he was a high school special education teacher. Mr. Collett is a graduate of the University of Kentucky, and Georgetown College (KY).
From an April interview with Collett: 
The same reason that academic success for any student is important to me. While it is true that much progress has been made over the last 40 years since the passage of the Individuals with Disabilities Education Act (IDEA), it is also true that there is still much work to do to ensure that all children, including students with disabilities, are prepared for success. For example, states have learned that a focus on compliance under IDEA, while necessary, is not sufficient by itself to improve achievement and outcomes for SWD. States are not content to maintain environments where the achievement of compliance alone is viewed as success. As a result, the focus has expanded beyond compliance to include intentional focus around results and to improving achievement and outcomes for SWD, as well as associated staff development and school improvement toward that end.
 At his confirmation hearing, senators should ask him about reports that DeVos wants to change rules concerning minority enrollment in special education.

Wednesday, November 15, 2017

Senate Tax Bill Would Repeal the ACA Individual Mandate

From the Autistic Self Advocacy Network:
ASAN remains strongly opposed to the elimination of the individual mandate to purchase health insurance under the Affordable Care Act (ACA), and condemns the inclusion of repeal within the latest versions of the tax bills.
The individual mandate helps make insurance more affordable, especially for people with disabilities. The bipartisan Congressional Budget Office has shown that 13 million people could lose access to affordable coverage if the mandate is repealed, with premiums rising an average of 10%. The American people have strongly rejected such proposals three times in this year alone. Taken in conjunction with the Budget resolution which cut $5 trillion dollars over the next decade from Medicaid, Social Security, and other essential services that allow people with disabilities to live good lives in our communities, the tax bill and the repeal of the individual mandate amount to a full-scale attack on people with disabilities.
It is reprehensible and immoral to take health care away from 13 million people in order to let corporations and the wealthiest Americans avoid paying their fair share of taxes. The lives and liberty of people with disabilities are worth more than this. ASAN urges Congress to heed the clear voice of the disability community–and many others–and abandon this umpteenth attempt to force a destructive and partisan agenda.

Tuesday, November 14, 2017

Trump Names Drug Company Guy to Head HHS

 In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Trump promoted that idea, but stiffed antivax activists in his appointments to FDA and CDC.

Now he is nominating a drug company guy to head HHS.

From the White House:
Alex Michael Azar II of Indiana, to be the Secretary of Health & Human Services. Mr. Azar is currently the chairman of Seraphim Strategies, LLC. Mr. Azar has led a notable career by serving in several senior roles in both the public and private sectors. As President of Lilly USA, LLC, the largest affiliate of global biopharmaceutical leader Eli Lilly and Company, he directly led the U.S. Biomedicines business unit, the affiliate’s largest division, encompassing the areas of neuroscience, cardiovascular health, men’s health, musculoskeletal, autoimmune disease, Alzheimer’s disease, and pain, as well as the sales, marketing, and payer operations of the company’s U.S. commercial business. Prior to his time at Lilly USA, Mr. Azar was the Deputy Secretary of the U.S. Department of Health and Human Services immediately after serving as its General Counsel, where the Senate confirmed him for both Presidential appointments by voice vote. He received his bachelor’s degree from Dartmouth College and his juris doctorate from Yale University.
Eli Lilly is not only a major manufacturer of vaccines, it is the company that developed thimerosal.

Antivax Rep. Dan Burton represented the Indiana district where Lilly is located. He attacked the company, and its executives (though not Azar personally) contributed to his primary opponents in 2010.

The antivax people are probably unhappy.

Trump betrays everybody.

In this case, good!