Patient Power

Carol Powers writes: "I cannot believe people who do not advocate health care for those who need it."

Carol, if you are referring to those who oppose mandated insurance coverage for autism, you are mistaken in saying they "do not advocate health care for those who need it."

A correct description would be that they oppose legislation that forces people to buy, and pay more for, insurance policies with features they may not want or need. This is a form of mandatory charity, and I see no virtue in that. I see virtue in voluntary charity, of course.

I've written in other posts that people in Canada can by critical illness insurance to insurance against specific risks, including autism:
http://www.patientpowernow.org/2009/05/14/criti...

I do not know why such a product is not available in the U.S. I figure any expecting parents who thought their infant (or soon to be infant) could be at risk, would want such a product. Given that this product is not available, the lack of competition in health insurance (b/c of government controls) and that I do not know enough about the issue to propose other alternatives, I do sympathize with the preference mandate the coverage.

I cannot believe people who do not advocate health care for those who need it. The idea of resigning ourselves to refusing health care for autism is ludicrous. Autism is not going away. There is an increase in demand for care for our children with ASD. Children with autism who do not receive treatment will inevitably be placed in the criminal justice system Have we learned nothing in this country about caring for our children. Would you rather pay for services or pay for incarceration because children have not learned to communicate or function in this society. Give me a break.

Autism prevalance is not high enough to have everyone's premiums significantly impacted if coverage is mandated. The mandate relieves insurers who would cover autism anyway from suffering from adverse selection caused by other insurers not covering it. The lack of mandates like this is one reason why insurance coverage is often so unclear to the buyer...and thereby so often over-priced.

Most of the healthcare system transfers income to the elderly, autism coverage is one of the exceptions to this. Many treatment therapies,such as ABA, have shown to be very effective for children in or near the ASD spectrum. The pay-off of successful treatment is very high as the potential number of improved life years for treated children is very high.

It is incredibly sad to see the selfishness and lack of community to which our society is sinking. It is truly a sad comment on America, a country where most people have everything they need and want, to think that we are so unwilling to share with those who are in the midst of misfortune. I can't believe that if anyone who authored an anti -bill 244 post here was confronted by a family with a child with autism who was begging for a few dollars to help with their medical bills those bloggers would refuse to help.... And yet, they are advocating against a program that makes it more likely that a family who needs help will get it.
Anyone who is dealing with ASD in Colorado should check out the Autism Society of Boulder County, or the Autism Society of Colorado for support and assistance. We are happy to do what we can to help anyone who needs assistance.

Autism should be treated as a disability and subsidized by state and federal governments according. Further, only liscensed physicians and behavior therapists should be on the list of state providers that would give the interventional therapy. Special provisions demand special status. If austisitic children require special provisions they need to be considered disabled and put in government subsidized medical programs. The enormous increase in premiums is unjustified.

I may never have heart disease or cancer yet my monthly health insurance premiums go to support people who do.
Why are proven behavioral therapies not covered by most insurance companies even if the patients are willing to pay higher premiums?
This is about saving money.
Chemo doesnt work on everyone but who would deny it to a cancer patient to save what, .25 cents a year on your premiums?
Maybe chemo to save someones life is charity then?

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Rich asks "Why are proven behavioral therapies not covered by most insurance companies even if the patients are willing to pay higher premiums?"

Off the top of my head I do not know. My guess is that yes, it's about money. They need not offer this benefit to keep customers. I'd like to think if the market in medical insurance were more free, and people were more free to change providers, then insurance companies would have to make more of an effort to compete for customers.

As the parent of an autistic child, I find your comments quite angering, Brian. You are feeding into the status quo that autism is just one more thing that is costing money, and we can't give money to everything.

Try to put yourself in my position. My husband and I are both taxpaying professionals, and we have private health insurance. Even though we pay large premiums to Aetna so that families dealing with children who have health problems like cancer can receive coverage, our claims for treatment of our child with autism are consistently denied. We are finding the cost of our son's treatments to be very difficult to handle on our own. But we have no choice because early, intensive intervention is what helps children with autism heal. This is proven and well documented. Even so, Aetna calls all treatments for autism "experimental" which is absolutely false.

With the passage of Bill 244, health insurance premiums will rise only .54%. This is not a significant enough increase to have the kinds of effects you are arguing it will have. Also, with autism at epidemic proportions, we can no longer ignore the fact that 1 in 150 of our children will require treatment for autism. Covering treatment early and intensively will actually be much less of a financial commitment than the long-term care required if a child does not receive services.

We are on two autism waiver waiting lists through the Medicaid program--programs that are based on the child's need for treatment and not based on family income levels. These waiting lists are approximately two years. In the meantime, families like mine need relief NOW. Until there are widespread changes to the health care system in this country, this is the best way to help children with autism receive the therapies they require while keeping families like mine afloat. That is how the business of health insurance must work for customers like me. There is absolutely nothing "charitable" about it.

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Catherine writes: "...families like mine need relief NOW. Until there are widespread changes to the health care system in this country, this is the best way to help children with autism receive the therapies they require while keeping families like mine afloat."

I agree with this point of view. That is, I really cannot blame or find fault with parents of autistic children who want mandated autism benefits. I am assuming there are no other alternatives for them in terms of insuring against something like this. I'd like to think that there are. For example, something similar to a product offered in Australia for birth defects. But if there is not, and it's reasonable to claim that government policies are in part to blame (insurance companies need not compete much for customers in an employer-based system, which the tax code promotes).

I do find it unfortunate, though. Yet, it's part of a democracy where politicians benefit from passing laws that benefit a small organized group while passing costs onto a disorganized majority. For more on this, see Government's End, by Jonathan Rauch.

That said, I do stand by my argument that mandated benefits are a form of mandatory charity.

Brian

It saddens me to hear your perspective on what should and should not be covered within our insurance system. While I agree with your scenario of the Dr. in New York, it is not Autism that causes this problem, it is a need for regulation in our insurance system to allow affordable insurance and not create a society of uninsured.

As far as Autism spectrum Disorder goes, I feel you need to become more knowledgeable about the disorder, the etiology and the treatments prior to making such statements. Autism is a neurological disorder. Current research supports a genetic component, traumatic birth (not due to parent issues - simply due to the complications that may arise in birth) and possibly frequent high fevers in early childhood. Furthermore, the rate of allergies and asthma is significantly higher for children with autism spectrum disorder as compared to children without the disorder. Clearly, Autism Spectrum Disorder entails many aspects that impact families in very different ways.

Autism Spectrum Disorder includes Autism (the most traditionally known form and most severe), Asperger's Disorder (which is high functioning autism) and Pervasive Developmental Disorder (characteristic but not as severe as autism). Although each disorder differs in the severity, the similarities in negative impact on social language, sensory integration (perceiving and organizing/coordinating sensory information in the brain), self regulation or the ability to regulate emotions and social interactions consistently impact children, teachers, parents and communities on a daily basis. To view autism as "something a family may have to deal with" or "a consequence of life" is insulting to the children as well as the parents and professional who work each day and are enriched by their experiences with children on the spectrum. Autism should be viewed no differently that cancer, childhood diabetes or any other medical or developmental disorder children may encounter.

I speak to you from many different perspectives. First, as a tax payer and a consumer of insurance, I gladly support efforts to research, treat, support and educate with regard to autism spectrum disorder (as well as other significant challenges our society faces). Second, as a doctoral level psychologist with 18 years of experience working directly with children on the spectrum and their families I know the joys and challenges this disorder brings -as well as the significant impact the disorder has on families. It is not uncommon for families to move cross country, forgo careers (that would pay quite well), give up luxuries and limit necessities to meet the needs of their children. While all parents should do this all parents do not face similar challenges (this is why we have insurance - just as if a child has cancer insurance pays and we as an educated and civilized society meet these needs for the good of community and the human race). Third, I speak to you as a graduate professor who teachers those who chose to work in the field of psychology - specifically with children with disabilities. These students spend years and tens of thousands of dollars. They do this because of the passion they have for children as a whole - all children!! (and they will work in this career for little money compared to the cost of education). Lastly, I speak to you as a parent of a 6 year old with high functioning autism. We have not billed anything to insurance - because we can't and pay without hesitation for the needs of our child. We purchase items for the school and I volunteer time to work with other parents who have children on the spectrum.

What I find ironic, Sir, is that you assume that the disability my son has does not warrant the same compassion and care as does any disability or medical condition faced by a human being. Please explain you thoughts. You say it is financial. Well, it is not. It will cost less in the long run to treat and educate children on the spectrum. My son, at age six not only has aspergers - he is also diagnosed as gifted and is currently interested in physics, space, electronics. In fact, he builds robots. However, he is unable to join in a group of peers, utilize expressive communication and is faced with multiple sensory issues each day. With language therapy, occupational therapy and the many social opportunities we provide for him he will have the same opportunity afforded to all citizens and contribute vastly to our society. My family is fortunate in that we are able to absorb the cost, though at the expense of college fund - and the choice of affording a second child. We also pay over 600 a month for health insurance. Autism is a medical disability and should be covered. If my child had epilepsy would you treat him and me the same?

Please educate yourself on the nature of the disability before you make assumptions with regard to the families impacted by such disabilities.

Kathie

This comment is only superficially appealing. Autism is not going away and the costs can not be avoided. They can, however, by significantly reduced if we don't stick our heads in the sand. (1) Group medical insurance is designed to spread the risk and cost of medical treatment. It is, by definition, designed to cover this type of occurrence. (2) I surely pay for my neighbor's very expensive cancer treatment and that additional $5.00 per month (or whatever it is) in my premium is not going toward my childrens' college savings. How can it be okay for a company that controls access to medical treatment to discriminate against, to exclude, one group from medical treatment? Would you think it is okay to exclude cancer? (3) Morality? You call upon morality? These are children who are being denied access to effective medical treatment that makes a profound difference in their entire life. Can you imagine not being able to ask for a drink of water? Can you imagine not being able to have a single friend? (4) A Harvard study found that it costs $3.2 million to take care of a person with an ASD over his or her lifetime. Those costs are reduced by 2/3 (a savings of over $2 million per individual) with early intervention. (5) This Bill will lower taxes in the long run. With effective treatment, only 20% of individuals with an ASD will need extensive government support as adults (Freeman) - they are much more likely to live semi-independently or independently and be able to contribute to society. If they do not receive treatment, the number jumps to 50% that will need extensive government support as adults (Motiwala et al.).

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Brian replies:
Thank you for your comments, Jill. It appears that what is superficial to you is fundamental for me, and visa versa. I am no no way trivializing autism, and I thought I'd made that clear in the original post. Yet, there are many serious issues that could benefit from people's funds. Mandating autism coverage, and forcing everyone to pay for it turns insurance into a form of mandatory charity. Yet, there is no virtue in either being forced to donate to charity, or forcing someone to donate to a cause. I've written about this here and here.

When people buy insurance, they are doing just that, insurance themselves and their family. If they want to forgo insuring themselves against a risk, like autism, then that should be their choice. (Assuming there's a product that has such an option). If they want to donate to a charity to help families with autism, that should be their choice.

With mandated autism benefits, it becomes a crime for someone to make a voluntary agreement with someone else about paying for medical care in any "insurance like" way. Consider my post "N.Y. Bureaucrats vs. Dr. John Muney & the uninsured":

New York, NY - The state is trying to shut down a New York City doctor’s ambitious plan to treat uninsured patients for around $1,000 a year.

Dr. John Muney offers his patients everything from mammograms to mole removal at his AMG Medical Group clinics, which operate in all five boroughs.

“I’m trying to help uninsured people here,” he said.

His patients agree to pay $79 a month for a year in return for unlimited office visits with a $10 co-pay.

But his plan landed him in the crosshairs of the state Insurance Department, which ordered him to drop his fixed-rate plan - which it claims is equivalent to an insurance policy.

Do you see the aggression here? A doctor offers something to his patients, and a patient likes the offer. But then people from the government step in and say this is illegal. Where's the justice here? The same goes for buying more traditional insurance w/o a mandated benefit like autism.

I would find it more straightforward if advocates of the autism mandate instead supported a tax to fund a government subsidy for autism treatment. Then at least the cost is out in the open.