Debate: Autism, Transplants & the Definition of Gold Plated Insurance

[Guest guest]

On one of my other Autism groups, someone who's in the leadership of an Autism

advocacy group posted this comment, " How awesome was it that autism was a

discussed more than once in the debates last night!!!!! Go awareness!!! " I've

advocated and waited so long for this to happen, but it's not at all like I

imagined. I have mixed feelings. I don't want to offend anyone's political

sensibilities, but I need to vent some concerns.

 

I watched the last presidential debate and was quite taken back. McCain implied

multiple times that Sarah Palin knows more about Autism as just about anybody.

Her child has Down Syndrome; not Autism. On occasion, someone has a child with

both conditions, but that has not been said of Trig Palin. I would never assume

to be one of the most knowledgeable people around on the topic of Down Syndrome,

Cerebral Palsy, etc. because my child has Autism and that's my focus. Yes, I've

heard her nephew has Autism, so she might know some about the subject or like

some Autism families' extended family members, she might not have made much

effort to learn about Autism. Regardless, someone who assumes to know it all

usually lacks the curiosity and drive to inform themselves about all facets of

an issue. Parents of children with Autism regularly (some times daily) seek to

educate themselves on all facets of the condition. So, McCain's implication

about

Palin's autism expertise is offensive to the Autism families and professionals

working in the trenches. I'm sure Palin has educated herself about Down

Syndrome since that is her son's diagnosis, but not Autism to the extent that

McCain implied. As I said, I've long wanted Autism to get some serious focus by

the candidates, but with Autism families a potential gold mine of votes, this

feels like we were just used as a political prop. It should also be noted that

as Governor, Gov. Palin did not restore any funding to Alaska Department of

Education and Early Development Special Schools budget to return to the FY2007

levels of funding. Thus, she maintained the 62% cut in funding that former Gov.

Murkowskis had done. So, I'm not impressed with her promise of special needs

advocacy.

 

Now, my other concern may not seem to have to do with Autism, but please grant

me your patience by continuing to read, and the problem for Autism families with

become clear. McCain said that [while taxing our employer health benefits] his

insurance tax credit of $2,500 for individuals and $5,000 for families would be

enough for families to shop for their own provider, unless you have a " gold

plated " plan that covers " cosmetic surgery or transplants " . If someone is

dieing and needs a transplant, they should have to cough up more money? I have

kidney disease and need to be here for my daughter. I remember too well the

tragic story of Nataline Sarkisian

http://abcnews.go.com/Health/wireStory?id=4040168 the 17 year old girl who died

waiting for a transplant because her family was jerked around by their insurance

company. Note, I've since heard it speculated that McCain meant " hair "

transplants. McCain did not say " hair " transplants. If

he meant hair transplants, he should have said that in the debate. Our leaders

need to say what they mean or we could end up in a international crisis due to

ineffective communication. Regardless, I'm not assuming needed organ

transplants are safe from being considered " gold plated " coverage.

McCain's broad definition of " gold plated " insurance coverage, begs the

question, what prenatal care and procedures would be considered " gold plated " ?

The U.S. ranks 29th in infant mortality rate. When a pregnancy is in danger but

can be saved by a procedure in utero, the parents better have McCain's gold

plated insurance or they would have to choose between either to putting

themselves in severe financial jeopardy or to letting their baby die.

http://health.usnews.com/articles/health/2008/10/16/health-buzz-infant-mortality\

-and-other-health-news.html

Finally, the Autism community has been working its tail off with studies and

legislative efforts to get insurance to cover Autism therapies (ABA, Verbal

Behavior, Son-Rise, Biomedical, HBOT, etc.) McCain's healthcare plan nullifies

states' mandates for Autism coverage. If his plan becomes law, insurance

companies will disregard Autism coverage, destroying all the work so many people

have done. Many Autism families are on the brink of financial ruin, after many

years of their income being redistributed due to medical expenses, while

insurance and pharmaceutical companies get tax cuts.

Then of course, many Autism families that I know have multiple

illnesses/conditions with their ASD child. Since the young and healthy people

can easily find insurance, leaving families like ours (autism, kidney disease,

lyme disease, asthma, severe food allergies, etc.) in the pool of those getting

insured through employers, employers may stop providing insurance coverage

because it would be too expensive. Then, what would we do?

 

Here are the links to compare the candidates on Autism:

http://www.johnmccain.com/content/?guid=24dc9c37-e739-4aa3-8a88-ebae650a2f11

http://www.barackobama.com/pdf/AutismSpectrumDisorders.pdf

I f you'd like to watch the debate, here is a link to the entire debate:

http://www.msnbc.msn.com/id/3032553/

 

Regardless of who wins, starting November 5th, we must put aside negative

feelings and work together for our kids. We must push for more effective

legislation for our kids (including adult kids). We will need to decide our

legislative priorities based on the particular new president's approach. If it

is McCain, I really believe that one of the top priorities needs to be a

national effort from the Autism community to contact the US Senate and Congress

repeatedly to urge them to prohibit insurance companies from ignoring state

mandates for coverage for Autism, Cancer, etc.

 

If you wish to forward this to others, feel free to do so.

 

Peace be with you!---Nicole