Conflict within the Autism Community

President Obama has nominated Ari Ne'eman (pronounced AH-ree NAY-men) to the National Council on Disability, and in the process has inadvertently highlighted a split in the Autism advocacy community. Ne'eman is an interesting guy. He apparently has Asperger's disorder and is the Founding President of the Autistic Self-Advocacy Network (ASAN). They argue that autism is a form of "neurological diversity." By conceptualizing autism in this way, ASAN sees autism as a form of diversity, not an illness.

ASAN argues that the main focus on autism expenditures should be on providing supportive services and thus finding ways to include autistic persons in society. It shouldn't be on finding a cure. In contrast, the largest advocacy group on autism in the US, Autism Speaks, still sees autism as an illness that needs to be cured. They want to see an emphasis on research on causes and cures. The New York times just published an article on the controversy.

From my perspective, as a clinician who has worked with persons with autism, the controversy is overblown. The reality is this:

First, advocates of the neurological diversity hypotheses about autism should remember that the vast majority of mutations occurring in the natural environment are maladaptive. There is no reason to assume that all diversity is good and this is the case with autism. The social and economic costs of having a child with autism in the family are tremendous and we should not idealize autism. Families are disrupted. There are divorces, because parents are depressed and guilty about the child. Siblings often feel left out and lost in the family while parents devote most of their energies to the disabled child. Autism can be a terrible disability. We have found that early intervention does have a positive impact on autism, but we are still a long way from a cure.

Second, there is a wide range in the functioning of autistic persons. People like Ne'eman can function fairly well and be remarkably successful. However, they are the exception to the rule. Most autistic individuals are unable to function independently and--if they can work at all--can only do manual labor. While there is nothing wrong with manual labor, people with autism simply do not have the social skills to function adequately in those kinds of situations. I know. I work in an county that still has a lot of factories. A person who is "different," perhaps in appearance, ethnicity, or functioning, gets horrible harassment, especially if they don't have the social skills to stop it. A factory or construction site is not a place for people with autism. There are few jobs out there for them in the community.

Finally, our current commitment to housing and social resources for people with autism is pitiful. It takes years to be placed in supported housing in Pennsylvania. I assume it is the same in other states. Care providers in group homes are terribly underpaid and there is a tremendous turnover in employees. The greater the turnover, the less the experience of the average care provider, and the worse the care is.

Ultimately, given our limited resources, we have no choice but must divide them:

• We need basic research to better understand the causes of autism, which we hope will lead to either a cure or prevention or both.
  
• We need treatment research to improve our current assessment and treatment protocols.
• We need more social services to provide more support so that we do not abandon persons with autism.

Obviously, I'm arguing that both sides are right and I don't apologize for that. Advocates of each side can deny the legitimacy of the other side. But in the long run, treating autism is an overwhelming task and no amount of denial will make it less overwhelming. Compared to the need, our resources are very limited. Is it hopeless? No, but solving the whole puzzle of autism will take much time and many more lives are going to be impacted by it before then.

There is a book of Jewish wisdom, entitled Pirke Avot, which is variously translated, "Ethics of the Fathers," or (more modernly), "Teachings of the Sages." One of my favorite teachings comes from Rabbi Tarphon, who said, "You are not required to finish the job, but neither are your free to abstain from it." He was talking about religious study, but his advice has also been interpreted as applying to doing good works. As a society, we need to live by that wisdom, especially as it applies to all forms of disability.

We Won! (For the Time Being)

Last night, the Democratic Party won it's fight to reform health insurance. You'd think it was over, but it's not. The Republicans have sworn to repeal this legislation.

So, first, there will be another endless round of parliamentary maneuvers in the Senate to delay passage of the budget reconciliation bill. That will eventually fail, but in the meantime the Democrats will go through another round of shooting themselves in the foot by arguing over the bill.

Then comes the November congressional elections. At this point, the whole electorate will be fed up with the whole thing. This, however, won't stop the Republicans from lying about something else and continuing to stir up the pot. If the Democrats play true to form, they won't anticipate what the Republicans are going to do and will get caught flatfooted. They'll have to say such things as, "No the new health plan won't require you to get your nose pierced," while Fox News will swear up and down that it does. So, here's what I recommend:

• First, by the November, some of the provisions will be in place. Democrats should spend the next seven months all over the news showing people what is really happening. Point out that if you like your insurance, nothing's changed. Point out that people in the high risk group have finally gotten insurance and can breathe easier.
  

• Second, the Democrats should immediately and loudly and repeatedly portray Republicans as people who are perfectly happy with millions of Americans being without insurance. Put the Republicans on the defense for a change.
  

• Third, don't throw numbers like "40 million" around. Instead say, "one in six Americans are without health insurance." Think about what that means the next time you're in McDonald's.

• Finally, make them out to be the obstructionist, sore losers they are.
  

Make the debate about the Republicans and you'll win in November. Make it about health insurance and you'll lose to their next round of lies.

Health Care Hangs in the Balance

Well, here we are again, wondering what will happen to health care reform. It is amazing that we're still watching the Democrats fumbling around when there is a clear path to success.

Before Howard Dean took over as chair of the Democratic party, I used to say that Republicans are a bunch of vicious hypocrites and Democrats are a bunch of fumbling incompetents. Then Dean launched his 50-state strategy. I watched Obama run a great campaign and the Democrats in congress got majorities in both chambers. So I stopped saying it. Unfortunately, now that Dean has completed his tenure, the Democrats went back to their old ways.

So, in the hope that Democrats still have some potential, here's my message to those of them who are still on the fence about health care:

• This is why you became a Democrat. Democrats believe in the ability to government to help people. Democrats believe that government should help everyone, not just the wealthy. Here's your chance to act like a Democrat.
  

• Failing to pass health care reform will make you look inept. That's what the Republicans are counting on. Don't worry about people voting against you for passing health reform. They didn't vote for you in the last election. Worry about people who will vote against you for your legislative incompetence.

• You'll show Republicans they can lie and get away with it. Do you think they'll stop lying if health care reform goes away? NO, YOU IDIOT!! THEY'LL SEE LYING WORKED AND LIE MORE!!

• Don't be afraid of Republican lies. They lie because the facts are against them. Otherwise, they wouldn't have to lie. Don't be afraid to call out the Republicans on the their lies and don't be afraid to answer their lies with the facts. Just learn to make the facts understandable. Say it over and over and people will get it.
  

• I promise I'll vote for you if you support health care. I know I'll regret this, but I mean it. I dislike both my senators (Specter and Casey) immensely. But I'll vote for them in the primary and general elections if they can deliver on health care. Screw this up, and I'll vote for Felix the Cat first. This is especially true for you, Bob Casey, if you get sucked into the anti-abortion mess.

• The Senate bill is imperfect but it is still better than nothing. I'd be happy to see the public option in there. Hell, I'd like to see a single payer system, but I know it can't happen in the US. But since you can't make a perfect bill now, this will do. You can make the system better in the future, even without a single payer system, and maybe without a public option.
  

• Don't be afraid to use the budget reconciliation process. The Republicans used it to pass their tax cuts for the wealthy. You can use it, too. Make the Senate bill better with it. The fact that Republicans are yelling (and lying) so hard about it tells me they're scared. GO FOR IT.
  

• Don't worry about Republican hand wringing over the deficit. Instead, counterattack. It was Republicans who ran up the deficit with unwise tax cuts and two unfunded wars. They were the ones that created the economic mess we're in with their opposition to effective regulation of Wall Street. Economists will tell you that the deficit is not out of control, especially because interest rates are so low. Answer Republican lies with the facts.

• Health care reform is good for the economy. From reducing lost wages to reducing illness-related bankruptcies, better and more affordable health care is good for the economy. More affordable health care means more small business start-ups. Small business almost always fuels economic recoveries.
  

• Don't be afraid of a Republican filibuster on this or any other bill. Make the Republicans do it. Let voters see the spectacle of them staying up all night holding up the work of the Senate.

• Stop trying to get a bipartisan bill. In AA, they define insanity as doing the same thing over and over again and expecting different results. Get some sanity. The Republicans aren't going to help you.
  

And pass the damned bill!

Is Health Care Reform Going to Fail Again?

I've been watching the debate over health care reform and I'm losing hope that it will happen. People of good will can disagree about the best way to deliver health care to all Americans. But, we're not seeing that. Instead, the debate is about nonsense. Things like:

• You're going to substitute socialized medicine for my Medicare! (No, Medicare IS socialized medicine and nobody is trying to mess with it.)

• You're going to make health care elitist, so only the wealthy will have good health care! (No, the way it is now, only the better off can get good health care. Obama wants to make it less elitist.)

• The government will withhold health care and let old people die! (No, nobody has proposed that and nobody would tolerate that.)

• An anonymous bureaucrat will control my health care! (What do you think is happening now? With public health care, you can write to your congressman. Under the current system, you get to write to the company that denied you coverage.)

• It's going to be too expensive! (No, doing nothing is too expensive. Nobody has argued with President Obama's point at his last press conference, that doing nothing will double our health care costs in ten years, while further reducing the number of people covered.)

• I won't have the freedom to choose my health plan! (You don't have that freedom now. Your employer selects the plans you get to choose from. If you're lucky, the plan you can afford is adequate. If we have a "public option," that plan will be available to everybody, actually increasing choice.)

• I won't have the freedom to choose my doctor! (The way it is now, you have to choose a doctor who takes your plan. If your employer decides to change your plan, you might have to change doctors. That won't change unless regulations require insurance companies to accept all willing providers. Fat chance.)

• I won't be able to keep my current plan! (Yes, you will. There is nothing in any of the current proposals to keep you from doing that.)

• I'll be forced to buy insurance when I don't want it. I should have the right to go without insurance! (No, we're all in this together. You never know when you'll fall down the steps, get bitten by a mosquito carrying Lyme disease, or be diagnosed with cancer. Just like with car insurance, you pay into the system so you can get the benefits when you need them.)
  

The health insurance companies like the system the way it is. They're making money hand over fist. They don't want any changes and they are throwing money at both parties (1.4 million dollars a day!) to defeat reform.
Worse yet, the Republican Party has decided that defeating Obama is more important than helping US citizens. They have been actively feeding this nonsense through their usual media outlets. They ought to be ashamed of their lies, but I don't think they have the moral fiber.
There is no reason we should be holding to the current system. It's a social and economic mess. People are going bankrupt with medical bills, while others have no coverage at all and only get treatment at an emergency room when they are really sick. Furthermore, we cannot compete internationally if we continue to throw good money after bad for health care.
Every other western nation has managed to provide health care for all its people. Why can't we? There's only one reason we can't: We've got Republicans and they don't.
Blue Dog Democrats are bad enough, but at least they're willing to vote for something. If health care reform fails it will be on the Republicans, and they will happily take the credit. But, while they are celebrating, they should know there will be a lot of us who will remember what they did.
I guarantee you, if health care reform fails, the only time I'm going to vote Republican is for dog catcher. Then I'll get the meanest, nastiest dog I can find and set it loose.

How Health Care Reform can Save Money

Health care reform is near and dear to my heart, both as a provider and as a patient. The national situation, where 40 million Americans either have no health insurance or bad health insurance, is an abomination. Under Obama, it looks like some kind of reform is going to happen now. I've been wondering about some more obscure aspects of the system.

The Senate Health, Education, Labor, Pensions (HELP) committee has released an outline of its latest proposal for for health care reform. I just found the bill on their web site. It's 615 pages, so I don't think I'll be reading it between clients. I skimmed over it, and didn't see what I was looking for.

I was specifically looking for reform of programs that have health insurance components, such as:

• Worker's (or Workman's) Compensation insurance;
• Motor vehicle insurance;
• Medical malpractice insurance;
• Homeowner's, renter's and business liability insurance; and
• Product liability insurance.

You could probably come up with some additional examples, but these seem to be the major insurance programs. All of them deal with injuries which are attributed to the fault of another person or entity. Under these plans, medical costs attributable to the accident are not paid through the person's medical insurance. They are paid by the appropriate liability insurance company.

So, for example, a worker injured on the job is compensated by the employer for his or her injury through Worker's Compensation. Injuries from slipping on a wet floor at the supermarket are paid by the supermarket's liability insurance. An injury caused by a defective product is paid for by product liability insurance. Here's the critical thing: While the person's initial claim may be covered quickly by the insurance company, escalating costs are fought vigorously. The only thing an injured person can do is hire a lawyer.

Universal health care can reduce some of these costs, but my reading of the bill says it won't. This is a shame, because one of the goals of insurance reform is to reduce costs to businesses. Let me show how it can do this. First, as an example, consider worker's compensation:

An employee is hurt on the job. He goes to the emergency room as instructed by his employer and gets initial treatment. Then, he goes to other physicians or therapists as appropriate and takes some time off to recover. Ideally, Worker's Compensation would cover the medical costs and the lost wages.

"Ideally" is the operative word. Worker's Compensation insurance will cover the employee's claim only if they are convinced that the injury is genuine and a direct result of the employee's accident. They fight the claim if there is any ambiguity in the diagnosis or if there is any reason to suspect a preexisting condition. There is always ambiguity and there are frequently preexisting conditions, so a large number of Worker's Compensation claims end up in litigation.

The whole thing can take years to resolve. During this period, the employee is subjected to extensive harassment and intimidation. I have heard all of the horror stories, and I've heard them repeatedly. The first time you hear them, you think the person is paranoid. But then you hear the same stories again and again, and it no longer seems delusional.

For example, a person receiving Worker's Compensation benefits finds that, with no good reason:

• The person goes to a pharmacy to refill prescriptions. The prescriptions, which were covered a month ago, suddenly aren't being covered. There's a $500.00 bill to be paid before they get their pills.
  
• The monthly check covering lost wages stops coming without warning.

Frantic phone calls go unanswered until the person retains an attorney, and then magically the benefits start up again for some period of time. Then, other things start happening:

• The person is followed and videotaped by private investigators to find evidence they're not disabled. Investigators are allowed to videotape through the person's windows and show the tape in court.
  
• The person is sent to a physician, sometimes far away from their home, whose sole job is to review the claim, perform an examination, and proclaim they are ready to go back to work.
• Hearings over eligibility for Worker's Compensation are scheduled far in the future and then continued for no good reason, often leaving the person without a check or without medical care.
  
• Needed treatment is denied after a long decision-making process. Often this means that more extensive and expensive treatment, with poorer results, has to follow after the claim has been resolved.
  

I would rather find out that a nuclear cruise missile has been launched directly at my rectum, than to go through this. Of course, that's the point.

For Worker's Compensation companies, there is no downside to this level of harassment. The more they harass you, the more you get worn down, and the quicker you are to settle. It's expensive, but the costs are just passed on to the employer, who is reassured that they are really saving money because none of their employees are (God forbid!) getting over on them.

My experience has been that Worker's Compensation has been the worst of these systems, but this can happen anywhere when liability for medical care is involved. I've seen it with motor vehicle accidents, and have heard about it with medical malpractice and product liability cases.

We all pay for this crazy system. We don't pay it up front, and the costs are hidden, but they are there. When you buy a car, a refrigerator, or a can of soup, part of that cost covers workers compensation and product liability insurance. Similarly, when you pay your car insurance premium, part of that premium pays for health care costs for injuries others have sustained in an accident. The price you pay for food or for a swing set partly covers these costs. Your health insurance premium partly pays for medical malpractice and workers compensation for health care workers.

So here's my question: If health care is a right, not just a perk provided by your employer, why not just include the treatment of all injuries under it, regardless of origin? That way treatment is administered in a timely manner and without difficulty. There will still be litigation over lost wages, pain and suffering, and lost capabilities, but at least health care will be out of the picture.

I can hear the demagogues bellowing, "I don't want my health insurance to pay for someone else's mistakes!" Well, as I just indicated, you pay for it anyway. You just pay for it with a different check. And you pay more for it because you have legal fees attached to it. We can streamline the process and reduce costs by eliminating the adversarial system as it covers health treatment.

Will people try to run up health costs to appear more disabled than they really are? Of course they will. But however health care reform works, there will be cost controls in place to handle unnecessary treatment. Those cost controls are much less expensive than litigation.

How much less expensive is an open question. I haven't been able to find statistics on how claims break down into medical vs. non-medical payments. One site I found wanted $500 for access, so I'll leave that issue to others who have better library access than I do. I would love to hear from you if you do have that data.

By removing medical coverage from worker's compensation and various liability insurances, we reduce costs to employers and manufacturers. We have heard about tort reform for years and it is usually a code for "let's screw the little guy." This is a simple tort reform that has the potential to significantly reduce costs and will benefit the little guy at the same time. It makes our products more competitive on the world stage and that cannot be a bad thing.