Monday, September 14, 2009

Health Care Reform Abandons Developmentally Disabled Children

Sunday, September 13, 2009
By Terri Lynn Tersak

I’m a parent of an autistic child and Autism Advocate. We are often asked when we first noticed a problem with our son Xander (X). X got his first MMR along with his Varicella (chickenpox) vaccines on 09-20-2004. Two weeks later he was showing pronounced symptoms of Autism Spectrum Disorders.

It did take a while to get autism as the official diagnosis. But we started asking questions right away. The first roadblock was that the autism upsurge we are seeing began a year or two before X was born. We were told how badly the system was slammed, so they wouldn’t even begin the evaluation until he was three years old.

During our 18 month wait for assessment we started hearing word about the MMR and stopped his vaccinations. From that point, to this day, folks (like teachers of autistic children, social workers, etc.) have been telling us not to give autistic children the seasonal flu shots and to skip the second MMR too.

As much as I disagree with most of what the public is told about autism, I do understand what’s going on. Currently the autism prevalence figure widely promoted is, 1 in 150 children are autistic. There was an upsurge in the mid 1990’s and the vaccines or rather a mercury based preservative (Thiomersal) in the vacancies was blamed. But, the studies said it wasn’t to blame. Yet without any legal mandate the producers of vaccines stopped using Thiomersal in all vaccines except in the seasonal flu shots, which require it for some reason.

Now we have an even larger — try massive — upsurge in autism. Currently the CDC and NIH have the next/latest autism prevalence figure undergoing “peer reviews.” I’m all for thorough peer review and do admit I tend to ignore studies and figures that aren’t exhaustively vetted before release. However, many believe this review set is being dragged out for more than just political reasons.

The reform effort is all about “the numbers.” So I’ll cover some with you. The 1 in 150 prevalence figure is somewhat rounded up to an easy to say number. The accurate currently published autism prevalence figure is 6 in 1000. Thus 1 in 150 is actually too high. The new prevalence figure for autism is expected to be more than 12 in 1000, but is already being called 1 in 100. So the media is prepping to say something like “… Autism prevalence is up from 1 in 150 to 1 in 100, a 33% jump …” when the truth is, it will be more than a 100% increase (doubled) in 2 years!

This new prevalence number reflects the addition of the children that started school in the 2007-2008 through 2009-2010 school years, thus those born between 2003 and 2004. This massive upsurge comes from the children born those two years. Currently more children are annually diagnosed with Autism than are for AIDS, diabetes, and cancer combined. Once the new prevalence figure is released autistic children will represent at least 1.2% of all school age children.

See: “Introduction to Future of Autism Keynote Panel” for the first unofficial release of the new prevalence figure by the Autism Society of America.

Here are some of the raw numbers, by state.

State index

State Level Autism Insurance Reform Efforts

Although my personal focus has been on support for the autistic, all developmentally disabled (DD) are currently excluded from health care equity/parity under the current Federal Statutes. This leaves the states and private insurers able to deny coverage under both private and public health insurance plans.

The best reference for what is classified as DD is found in the World Health Organization’s, “International Statistical Classification of Diseases and Related Health Problems, 10th Revision, Version for 2007″ (IDC), in Chapter V, Mental and behavioural disorders, Disorders of psychological development, Blocks F80-F89

All those listed in these blocks of the IDC that do not have an associated medical condition(s) or mental health classification(s) are currently at risk of total omission from the current health care reform bills. Inclusion of the full range of Developmental Disability classifications, along with the existing classifications of Mental Health and Substance Abuse, need to be addressed in advance of any health care reform legislative actions.

The shortest route to these ends would be an amendment to include DD in the Mental Health Parity and Addition Equity Act of 2008. However, the two authors of this Act are gone; Paul Wellstone was killed in an airplane crash and Pete Domenici retired due to health reasons. Finding sponsors who will enact legislation that will cost insurance companies a lot of money, arguably more than any one health inclusion has to date, has been a tough sell to say the least.

Early estimates say this latest upsurge in autism alone is going to cost between $300 Billion to upwards of $600 Billion – just for autism treatment – over the next ten years; above and beyond what we are being told Health Care reform will cost. This estimate does not include the cost of research to determine what caused this unexpected upsurge. Based on current costs of services, you can figure about $100K per autistic child, per year (for ball-parking numbers). How long they need treatment ranges from grades Pre-K through 6, up to lifetime support. The level of services needed range from $60K to $200K per child, per year depending on the degree of their affliction. So you can see that developing actuaries is going to be a daunting task.

Insiders say the real push for Health Care reform to happen now is being driven by various insurance and Pharmco entities so the laws, as written – that currently exclude parity/equity for autism – are passed and signed into law before the new prevalence figure goes “media public.”

Among the myriad of lies we are being told is that the current health care reform bills all include parity/equity for DD children, including autism. Not true. Review of the bills by legal scholars, coupled with a strong understanding of the complexities of our federal statutory construct tells the whole truth.

For example; H.R. 3200: America’s Affordable Health Choices Act of 2009. TITLE I–PROTECTIONS AND STANDARDS FOR QUALIFIED HEALTH BENEFITS PLANS, Subtitle B–Standards Guaranteeing Access to Affordable Coverage, Sec. 114. Nondiscrimination in benefits; parity in mental health and substance abuse disorder benefits.

(a) Nondiscrimination in Benefits- A qualified health benefits plan shall comply with standards established by the Commissioner to prohibit discrimination in health benefits or benefit structures for qualifying health benefits plans, building from sections 702 of Employee Retirement Income Security Act of 1974, 2702 of the Public Health Service Act, and section 9802 of the Internal Revenue Code of 1986.

(b) Parity in Mental Health and Substance Abuse Disorder Benefits- To the extent such provisions are not superceded by or inconsistent with subtitle C, the provisions of section 2705 (other than subsections (a)(1), (a)(2), and (c)) of section 2705 of the Public Health Service Act shall apply to a qualified health benefits plan, regardless of whether it is offered in the individual or group market, in the same manner as such provisions apply to health insurance coverage offered in the large group market.

Note how H.R. 3200 references existing statutes for inclusion of Mental Health and Substance Abuse related disorders. It does not create the language that defines what it is or is included. See the Mental Health Parity and Addition Equity Act of 2008 for some of the definitions and the statutes that act references and the statutes they reference to see what exactly is included for Mental Health and Substance Abuse related disorders, not H.R. 3200 or any of the other “Health Care Reform” bills.

Also note the words, “autism,” “autistic,” “ASD,” “DD,” or “developmental” are nowhere in any of the current health care reform bills. Then note there is no federal health insurance parity/equity statutes that cover autism specifically or the more general class of developmentally disabled.

Critical to the autistic and where the greatest level of health care discrimination to them is what are called, “essential services” or “essential benefits”. Again let’s review H.R. 3200, SEC. 122. ESSENTIAL BENEFITS PACKAGE DEFINED. Nothing related to developmental disorders or disabilities, or autism specifically is included. Not a word or reference to existing statutes. Currently, countless parents of children with an autism diagnosis, diligently call private insurance providers and asked for premium quotes for a policy, for their child. Each and every company explained that they will not sell a policy for someone who has an autism diagnosis.

“This is just not right,” says Jeff Sell, The Autism Society of America’s Vice President of Advocacy and Public Policy. “Not only are these families being unfairly refused coverage for treatment of autism, but the companies are also refusing to sell coverage so these young people can see a doctor if they get strep throat, break a bone, develop a stomach ulcer, require intensive behavioral interventions or otherwise simply need access to prescribed medical care. In the future, with meaningful health-care reform, these families will be able to buy health coverage because insurance companies will no longer be able to exclude anyone just because that person has autism, or any other pre-existing condition.”

[Emphasis added]

Only if parity/equity for autism in health insurance that mandates autism be included in public and private insurances “essential coverage packages” exists in some federal statute before the health care reform is passed and that or those statutes are referenced by the health care reform act that is passed into law will the autistic realize, “meaningful health-care reform.”

So why the push to pass “something” now?

The motive is, of course, money. The cost of covering autistic children will either crush insurance companies’ profits or force them to raise premiums at least $100.00, per month, per policy if they have to cover autism to the same degree they cover medical and mental health conditions. That’s exactly why they don’t cover them presently and the insurance lobby has all but declared war on autism coverage. Currently, both private and public insurances can deny coverage to the autistic, including basic medical coverage, which the state of North Carolina attempted to do this year (attempted to drop coverage from Medicaid and CAP programs for autism and other DD patients). The insurance industry doesn’t want this to change and make no bones about that fact. Thus leaving only “the public option” — whatever that really means — to cover the mess no one wants to be completely honest about.

The insurance and Pharmco lobbies in DC are each so big the oil and labor lobbies look like underfunded amateurs in comparison. So if we are going to get “health care reform” — that is really Health Insurance reform in disguise — while Congress can’t get an already pissed-off public to buy into a public option (never mind having to tell the public that the current plan, as the bills are currently written, means autism will have to be covered by the public option) — some major omissions of facts and mutations of truth is going to have to be proffered as truth (and it certainly is) and the current effort will needs to be passed before the new autism prevalence figure and its associated costs become well known.

The plain fact is; we are being told that the “public option” will only cover “a small percentage of people.” True, but this is the most expansive example of constructive fraud (a lie by omission) in history. That small percentage of people are some of the most expensive to treat and are the fastest growing group needing health care insurance that are currently, largely uninsured. If insurance equity/parity for the autistic isn’t legislated, passed, signed into law, and codified before the health care reform becomes law, this small percentage of people will be the single most expensive part of health care reform. Moreover, they will be entirely on the shoulders of the taxpayers who played no role in what has happened to these children or their complete abandonment.

So our bought-and-paid-for-government needs to ram the health care reform down our throats before we find out how badly they are screwing us to protect the biggest of all special interest groups, insurance and Pharmco. But as long as they get this colossal swindle passed before the upsurge numbers go media-public, then technically they didn’t lie to us to get our support. Because there is only the old “official government stamped” prevalence figure for autism, they believe they can say they didn’t know the exact level in the upsurge of autism prevalence when the bill or bills were passed.

Are you getting the picture?

So our battle is on several fronts: Equity in insurance and in legislative actions overall for the autistic — and all DD patients — and demanding an objective investigation into just did this to our children are on the top of the list. The fact is, whatever did this wasn’t by natural or environmental changes. This upsurge was sudden and without warning. The service providers have yet to get staffed to eliminate waiting times for evaluation of two years or longer even after having years to plan.

For the record: Environmental changes don’t happen over night or cause widespread, abrupt disruption to the world’s gene pool – BS on that story. Except in cases of massive detectable exposure levels, naturally occurring or environmental exposures do not cause almost instant changes in a child’s entire developmental processes – BS again.

Somewhere, some group is responsible for a monumental error. One so huge no industry or even group of industries can afford to pay for this mistake. Likely, the responsible parties are powerful and influential enough to keep the truth hidden. It does appear the taxpayers are about to get stuck footing the bill for this colossal screw-up, under the guise of Health Care Reform and like the parents of the autistic – without any warning.

Any plan that does not include everyone is not, “Universal” or “Comprehensive,” these are just words being using to mask the truth. In closing, please recognize that if 1 in 150 or 1 in 100 children were being kidnapped or developed cancer — all of a sudden with no explanation -– a national emergency would be declared.

We have a national emergency and we, as a nation, are failing to respond.

This entry was posted on Sunday, September 13th, 2009 at 6:04 pm and is filed under Economics, Family, Health, OP/ED, Politics, Society, Vox Populi. You can follow any responses to this entry through the RSS 2.0 feed. | 393 views | Trackback | Print this page |

I am a wife, a mother of an autistic son and the retied President & C.E.O. of True Equality Network. I much prefer Mrs. to Ms. -- marriage is a good thing and needs all the advertising it can get. | More from Terri Lynn Tersak


Unknown said...

You are right. But it is obvious that Medicaid has never abandoned its original advocacy of upholding the needs of disadvantaged, helpless children, although today, they also cater to adults and teens.

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