Star Ford

Essays on lots of things since 1989.

­Cost of disability

on 2012 October 21

­This essay discusses the way we pay for autism, from a marxist perspective. It goes into economic reasons that certain people are disabled from participation in the economy, some models of redistribution of money, the kinds of incentives that affect behavior in each of those models, the complexities of insurance as a redistribution model, and what to do about it. I’m starting with economics background to frame disability. Even though it is probably too long and thick, I hope you will read it and discover a completely different take on costs of disability than the conventional wisdom.

1. Efficiency and exclusion from the workforce

The very rich and very poor live off the work of others, as do the old and young, all those whose work is undoing the work of others, and all those who are disabled in the quest for employment. Various wealth redistribution systems exist to maintain the imbalances, and those systems constitute the livelihood of the majority; actual economic productivity is relatively uncommon. For every one person doing economically productive work like growing food, installing windows, or teaching children, there are several operating within the economy, but just doing paperwork or fighting over money and attention, the result of which meets no actual human needs. The more efficiently industrial production is accomplished, the more inefficiency we create on purpose to soak up the excess time. So far, we are seeing advanced capitalism playing out as Marx predicted.

There was a time when we could not afford to exclude people from the workforce: people who were too weak to plow fields were still needed for other things, and generally speaking, if you could not do one thing, you could probably do something else. There was no retirement and no adolescence. With gains in efficiency, however, we can now afford to be idle; or looked at another way, we can now afford to exclude the old and young from the workforce. As efficiency marches on, we are not using the gains to better meet the needs of everyone; in fact we just become more competitive and we concentrate the wealth more, creating a large chronic underclass with no means to provide for their own needs.

Advanced capitalism therefore has two opposing effects: increasing efficiency, which tends to exclude an ever greater portion of people from the workforce; and increasing inefficiency which tends to concentrate wealth. Both opposites operate together. For example, in the food production chain, the actual farming, transport and delivery of food becomes more labor efficient over time, and the resulting wealth is distributed in the sense that the people doing that work are all getting paid and the consumer is getting a necessary product for less money over time. But there is also a growing workforce in the areas of food patents, genetic engineering, marketing and legal sectors, who are all working exclusively for the owners of the food production chain in order to increase the owner’s advantage and increase their assets, and has no benefit to others.

Adolescence and retirement were invented concepts at one time, which served the progress of capitalism by ejecting people who were no longer needed for industrial and agricultural production, and at the same time, creating a dependent class with a redistribution system around them. We now have vast budgets for schooling and social security, and whole sectors of the economy dedicated to wealth redistributing and otherwise providing for the young and old, who either may not work or cannot compete against a narrowing class of employable people. I’m not making the case that the old way is better than the new way, or vice versa, but just that a class of people have become recipients who were once contributors.

This historical pattern has not stopped with age-exclusion; capitalism demands that we continually invent new categories of exclusion, expand the pool of people who are non-productive beneficiaries, and build a distribution system for these new categories. I’m looking at disability in this context: a class of non-worker with a distribution system surrounding it to allocate money to that class. Disability is a lot of things, but this essay is only about disability in that particular economic sense.

2. Why am I writing this?­

As an autistic person, I’m focusing mainly on the redistribution system we are building today to support the neurologically disabled – including autism, so-called attention deficits and other conditions of the mind that affect interpersonal relations. This dependent class is currently undergoing rapid expansion. This affects me greatly where I am in the economy. In the 20 years I’ve been in the workforce, a lot changed. I was not considered autistic before, under the older definition of autism. Earlier in my career my particular style of social communication was a disability, but not so major, in the sense that people would willingly pay me to do things in the information technology sphere. However, over the course of two decades, autism has expanded to engulf me: the definition changed to include people like me, and at the same time, I’ve been less able to compete in the market. As I write, I’m moving into more dependence on government programs for the disabled. It is important to see this not as any change in my objective value or ability to contribute, since I have actually become more skilled over time. It is rather a change in the economy: a new criterion is being used to filter out people from productive roles. Terms like “autism” probably stay roughly synchronized over time with the set of people who have fallen out of economic favor.

Interpersonal disability is constructed by the culture; it is a collective choice of our times, not a change in how people really are. A person’s cognitive style and way of processing language and adopting culture is fairly fixed over a lifetime, and is largely genetic, because it is part of the brain structure. There has always been variation among people’s cognitive styles, and the variance persists through generations. It is only where we decide to draw the line that changes. A person may not talk much or at all (“autism”), or might get easily excited (“ADHD”), but at one time, that would not be considered a good enough reason for her to be non-contributing. But today if a child does not talk, society places her in a disabled category. Instead of being someone who is needed, she becomes unneeded and instead has “special needs”. The trend seems to be to marginalize (not accept) more and more people, creating more disability. We are not moving towards universal acceptance; the trend seems to be the reverse.

3. Redistribution

Many of our economic subsystems that we take for granted are redistribution systems – health insurance benefits the sick at the expense of the healthy; education “benefits” the young at the expense of taxpayers; public transit and roads benefit users, distributing the burden in a complex way. Even the system of the drug war and prisons redistributes resources to the non-contributing prisoners. And for each of these, there is an industry surrounding the redistribution, one that craves expansion. There is tremendous pressure to have more trains, prisons, medical procedures, education, and everything else, because all of that benefits the industries surrounding the sick, young, imprisoned and poor. It doesn’t necessarily benefit those people; the motivation to expand is for the sake of the industries, and actual human needs are lost under the weight of the forces of efficiency and inefficiency.

Redistribution of this kind removes to some extent the force of market correction, so that tends to skew incentives and often results in perverse outcomes. For example, transportation costs are rarely paid per trip in full – the costs are spread in a much less controllable way, the result being to stimulate much more travel than would be economically optimal. This faulty redistribution model (lack of market incentive) is part of the reason for the staggering waste in the built environment and our inability to solve traffic congestion. So many of these systems are widely perceived to be in critical failure status – absorbing enormous amounts of work while not accomplishing their missions well, mainly those that have publicly controlled redistribution components. I will look at the system that provides for the interpersonally disabled class in the context of other redistribution models in other sectors.

The current political climate has highlighted the question of whether we should do any redistribution at all, mainly focusing on those systems under public control. Those who claim to be against it are largely the wealthy who benefit from others’ labor, and they will go on to insist that we improve Medicare, education, and so on, which indicates that they really do believe in redistribution, although perhaps they wish worse conditions on the underclass, or perhaps a return to outright slavery.

Consider that today the underclass has adequate time and many unmet needs, so one might think they could use that time to meet those needs – build houses, grow food for themselves and so on. But they have been systematically denied access to the means of doing so and many are without hope or knowledge. There is no way to return to foraging for berries and building log cabins when all the berries and trees are owned by the land-owning class. Advanced capitalism, by concentrating wealth upwards, is the machine that systematically denies that access and creates the underclass in the first place; consequently under that system the only options are massive redistribution of wealth downwards to sustain life, or genocide.

4. Incentives

I’ve suggested that failure of redistribution is due to failure to account for incentives. So I drew up five different kinds of economic incentive to shed light on why people do anything, economically speaking:

  1. The market incentive. This is the incentive to buy or sell in a way that maximizes net income. (A market exists when three basic conditions are met: First, there are multiple sellers, and buyers have an informed choice among them. Second, there are multiple buyers, and sellers have a choice. Third, the beneficiary of the goods is the buyer of the goods, or at least has a stake in it.)
  2. The incentive to limit demand. Certain goods are demand-limited, meaning people only want what they really need, and no more. Health care is a good example: people do not want to go to a hospital and get treated unless they need it. If a society gives away unlimited free health care (for illnesses), it is possible to satisfy essentially all of the demand, given the limits on what is possible to treat. On the other hand, the demand for housing, transport and energy are relatively unlimited by comparison: if these were free, people would want more and more with no foreseeable limit. Any kind of income support is also in the category of unlimited demand.
  3. The ethical incentive of natural rights. Certain goods are considered more fundamental or natural rights: shelter, food, and some education. Travel and entertainment are more removed from those basics. We are more apt to want to provide things collectively that we feel are true rights.
  4. The incentive to fulfill. We naturally desire to provide some kinds of services for others more than others. Teaching, for example: when adults interact with children, we often teach regardless of being paid to do so, because it is in our nature. On the other hand, driving a bus has little built-in motivation.
  5. The incentive to benefit from the common good. Certain services benefit us individually, even if we are not a direct beneficiary. For example, I generally believe that other people’s good health and education will benefit me because I’m less likely to be a victim of a virus outbreak or a property crime. Free trash collection is something I might want to contribute to because I don’t want my neighbors to accumulate trash. On the other hand, disability support and housing have less indirect benefits to non-recipients.

Of all these incentives, only the market incentive receives some little attention in political debate, but in general the role of incentives is absent in discussions about setting new policies.

Going back to public transit in the US: This is not a true market because there is one buyer (a city) and a very small number of sellers. The misaligned incentives means innovation is more or less prohibited, it is dismally expensive, and riding it is like punishment. True markets allocate goods more efficiently and don’t sell what people don’t want. If public transit was a market, the commuter would be the buyer and they would have a choice among a variety of providers, just like when they buy food or electronics; sellers would compete to provide the best service. But, aligning incentives correctly threatens the bloat in the redistribution industries, so pressure to correct this rarely comes from within.

Every public redistribution system should have a market component somewhere in it. Even if the system is operated completely by government, like libraries, just empowering a lower level of staff to make purchasing decisions independently can act like a market. For example, a library system in which 20 librarians can independently buy from 20 publishers satisfies two of the three market requirements. However, if the whole library system is bid out to a private operator, then that top level transaction does not meet market requirements, so the decisions will be infected with perverse incentives and the public good will be lost.

However, since markets are not the only form of incentive, redistribution policy has to take into account all the forms of incentive.

5. Redistribution models

As a part of collecting my thoughts on disability redistribution, I thought I should have a broad view of what redistribution models could exist, so I came up with the following list. Each of these has different incentive characteristics, which make it more or less suitable for a given sector.

  • Free and unlimited. Systems that are paid collectively by taxes, do not meter the benefits, and do not charge a fee. Examples: libraries, parks, city streets. This model only works where there is a natural limit on demand, and works better when there is an incentive to fulfill. The model appears to work well under those incentive conditions.
  • Free but limited. Systems that are paid collectively by taxes, but meter the benefits by user or by total cost. Examples: Education (time-limited), solid waste (volume limited), national defense (budget limited). Systems using this model mostly exist because of the perceived benefit from the common good, but when no natural limit exists on the demand. When the model fails to include market incentives, the total of positive incentives are too weak to contain costs: schools are bloated and ineffective, defense collapses into a game of getting contracts with no connection to the end result.
  • Non-market fees. Systems that are paid collectively by taxes and charge a below-market fee. Examples: transit, national parks, universities. The model is used when there is no natural limit on demand, and there are individual beneficiaries. The same failure to contain costs relative to benefits exists as above when no market component exists.
  • Vouchers. Systems that provide a limited amount of service at no cost, but with a competition of suppliers. Examples: food stamps, student loans. The model is used when there is no natural limit on demand, but there is a sense of natural rights for the particular categories provided for.
  • Entitlement income. Systems that pay a set amount of money regularly, which can be used for any purpose. Example: Social Security, public assistance (TANF, aka. welfare). The model is used when natural rights are believed to extend beyond categories used by voucher systems. This employs the best market incentives, as it has the fewest limitations on the beneficiary.
  • Corrective insurance. Systems that pool payers voluntarily (or via taxes), in order to pool risk, and pay the cost of correcting incidents of damages, illness, or other unexpected wrongs. Examples: Auto insurance and health insurance. Most insurance pays the beneficiary directly, and the recipient is not required to use the money to correct the wrong. However, health insurance is a special category because the payment goes directly to the provider. In order for the incentive system to play out in a stable manner, the insurance model requires three parties: the insurer, the insured, and an independent arbiter of the value of the damage. It must be a regulated competitive market with a natural limit on demand (i.e. restoring to a previous condition). Since the beneficiary’s and insurer’s incentives are opposite, it is an adversarial system. More will be said below on how corrective insurance fails when applied to health.
  • Insurance as entitlement. Systems that use the insurance model to cover conditions that are not correctable or are not damages. Example: Long term disability under Medicaid. This model has no rational purpose; when a benefit is an entitlement, it should be paid as entitlement income, as vouchers, or under some other model.

Of course there are hybrids to the above general categories. Notably, the co-pay on insurance shifts the incentive so that the beneficiary limits the level of redistribution, even if co-pays do not actually pay for much of total costs.

6. Insurance for health and disability

Bizarrely, in the US health insurance model, the provider of the medical service is the same party who determines the amount of payment, and is often the direct recipient. This is in contrast to auto insurance, where the beneficiary receives the payment and the court system determines the amount. (In practice the insurer usually sets the amount, and the threat of escalation to the court system keeps them in line. The system of auto insurance therefore has three parties with separate incentives, which is required for the insurance model to work.) This insanity of medical payments eliminates some of the beneficiary’s power to choose the corrective action. Also, since people always make decisions that benefit themselves in the aggregate, the distributions to the providers are constantly growing with no check. Why would they pay themselves less, given the option to pay themselves more? The partial check on runaway growth is that insurers set limits on costs per procedure, but they cannot determine whether a patient is sick or whether a procedure is needed. Like cancer, the health industry needs to grow without regard to the needs of patients, and we’ve given it the power to do so by using the wrong redistribution model.

The fix for runaway health costs must include the use of a different model that is more appropriate for that sector, instead of using the insurance model. Health redistribution has an advantage over other sectors in that it potentially has all of the possible kinds of incentive working for it: is naturally demand-limited, there is natural incentive to heal, it is perceived as a natural right (by many), each of us benefits from other’s health, and it could be a market system.

Some models that would appear to work better are the free and unlimited model, vouchers, and non-market fees (co-pays). One would have to divide the sector into that which is truly demand-limited (like infections, broken bones and other one-time wrongs that we know how to correct), that which is demand heavy (like end of life care, or chronic illness that we don’t know how to correct) and that which is not a health issue in the first place (such as disability and unnecessary surgery). Aligning the incentives of each segment of the health sector with its redistribution model will be needed to correct for runaway costs. The insurance model could only work for correctable wrongs if market competition existed to bid down the cost of correction, and a third party validated the condition.

Disability is conventionally part of the “health” policy arena, and the health insurance model is sometimes applied to disability, perhaps with the mindset that medicine can fix the disability. But when the disability was socially created in order to fulfill a need of the capitalist economy, then it makes as much sense to treat the ejected victims as fixable as it would to treat the conditions of adolescence and old age as fixable. Insurance is about pooling risk, and ideally insurance payouts should be limited in duration until the condition is rectified. Disability is not about risk – it is not a matter of how likely some event is; it is just an ongoing certain condition. A person can be perfectly healthy and have disabilities, so it is often not a health concern at all. Disability support belongs in a completely separate system from health.

7. Big Autism, big money

We have created a concept of “behavioral health” as a way to use the health system when there is no illness. The behavioral health industry does a number of things, and one of them is targeting unacceptable ways of being. The systematic targeting is done mainly to the disempowered – children or others dependent on the system. Perhaps there are adults signing up for behavior control on themselves, but I haven’t heard of any – would you do that to yourself? I have to take a stand here: Whether or not someone needs help with inner problems they define for themselves, it is a violation of rights to oppose someone’s personality and overall way of being, just because the health “provider” deems the person unacceptable.

But that’s what we are doing, in a big way. There are payments and services from social security disability, medicaid, state programs, and schools. Some go to disabled people, and some to the treatment providers and assistance. Parents often legitimately need help with autistic children, so they take what the system has to offer. There is a rapidly growing treatment industry, and the “costs” (that is, revenues) are escalating rapidly. Publicized estimates of the “cost of autism” suggest 3-5 million per child over their lifetime, with an increasing rate of diagnosis. Autism operates in a medical model, in the sense that these services, when covered by private or public insurance, and funded by payments made to the providers based on a medical diagnosis. Private insurers in New Mexico must pay up to $250,000 per child to the treatment industry.

The most common treatment, Applied Behavior Analysis, has no medical component. It is educational only, or more specifically, behavior conditioning. This is said to lower the “costs” of caring for the autistic person. But any industry that successfully lobbies government to get a guaranteed revenue stream that bypasses the control of the beneficiary is an industry that wants the costs to go up, not down. The lamentation of the costs from within industry is purely theatrical. In the larger picture, the ejection of the disabled population from the economy was done because of the advances of technology generally (more efficiency); therefore a counterbalancing inefficiency must be created to take up the idle time. That is the function of the industry: using up excess time and money while performing the redistribution function for the dependent class. It was never intended to change the power relationship between the provider and disabled person, nor to be effective, as that would destroy its income stream. I’m only speaking of the collective sociological function here, not the motives of each individual working in the industry.

One of the most striking things about autism treatment is the astronomical gap between what gets provided and what autistic people actually want. We generally want to have equal rights, equal access to opportunity, to be respected and have autonomous control of our lives (even as children, just as other children want increasing control). We also want help with things that we can’t do as well as others.

There is a tendency to see the problem with autism as something wrong with autistic people; hence the behavior conditioning. If we could learn to be like other people, the theory goes, we could be more “independent”. But no one is independent. The middle class is highly specialized and highly interdependent – few people build their own houses and take care of their other needs independently. When people talk about the value of “independence”, they really mean the value of having enough wealth to pay for what you need, just like any typical working person. Going back to before industrialism, it seems cognitive and interpersonal diversity would not have been a point of debate: people had to work regardless of their quirks (such as not talking), and a much smaller slice of people were too disabled to work. Diversity of mental traits has probably not changed, yet more people are becoming disabled. Today, reacting to the lack of jobs generally, or the lack of jobs that autistic people can do, by trying to change the people so they can keep up with the new demands on the workforce is irrational, considering the demands on the workforce became narrowed in order to eject those people in the first place. While it may be that one person can get a better result for herself by normalizing, it does not make sense as a policy.

Think of the economy as a sports team that only requires 15 players, and 20 people show up to be on the team. The weakest 5 will not be able to play no matter how much therapy they get. This explains why the application of treatment to the individual will not do anything to reverse the expansion of disability generally. This big-money “treatment” that targets our very being was not engineered to be a solution to disability; it is a just a way to capitalize on disability.

8. Approaching disability as poverty

I wonder if disability policy really belongs in the poverty arena, not the health arena. Poverty is an invention that takes the land and means of production from a class of people so that they cannot operate effectively in the larger economy or create a separate one. Case in point: What Europeans did to native North Americans was to take away their means of production and replace it with handouts (I’m skipping the bloodshed here, focusing on the economic aspects.) Now they have more things but less control: they are in poverty.

Since in the US there is some class mobility, those who stay in poverty include those who were born into it and/or don’t have the ability to compete out of it. They have less competitive advantage in some way, which is about the same thing as what we call “disability”. I’m not sure the distinction between a diagnosed disability and a non-diagnosed inability to compete in the job market is that important. I know that many people might counter the idea of lumping us together by saying something like: the disabled actually can’t work and the poor just choose not to, but that puts a moral, judgmental dimension onto it, which I doubt is true.

9. A modern Marxist approach to poverty

So I’m going to detour into poverty because that is related. First, what doesn’t work?

A non-solution to poverty is to try to “create jobs”. Everyone seems to want more jobs, yet thanks to automation, all our needs can be met with fewer labor hours than ever before. So the only way to have more jobs is to work more wastefully – busywork, exploiting human vices, left-field research topics, compliance with regulations and so on. Whether the unemployed receive a handout or they do waste-work, that seems to be about the same result in the end to me. What is suspicious to me is the reliance on the “job” as an economic cure without regard to what kind of work is being done. A job is a power-imbalanced relationship between an owner and an employee. The owning class only creates jobs as a last resort, as a means to further concentrate wealth, with the ultimate goal of eliminating those jobs, as they are an expense. Jobs are not created as a direct way to meet human needs, and so if the solution to poverty has anything to do with meeting the real needs of the poor, it cannot be based mainly on “job creation”. People will meet their own needs if permitted to, so the true solution to poverty has to be based on removing the barriers that prevent people from meeting their own needs.

In order to do anything about poverty, we need to eliminate the false understanding of the lack of money. When two destitute neighbors exchange work favors for each other without money, it is exactly the same as if they had borrowed money to pay each other for the services, then repaid the loans with what they earned from the other neighbor. Although they both have the same amount of money as when they started (zero), they end with more wealth as a result of the work done. This is because wealth is created by exchange, not by the mere existence of money. There is no limit to the amount of money; banks create it daily on nothing more than risk assessment; the only limit is on what people have the time and willingness to exchange. It is only the concentration of money, which is a concentration of power, that gives the illusion of a limited supply. The annual budget of a government or organization only reflects how much can be done in a year; the fact that the federal income is usually overspent creates a debt, which is just a redistribution from the taxpayers to the wealthy lenders, and the extent of debt does not change how much work is actually done.

Accepting that the solution to poverty and disability will not be found in “more jobs” rhetoric or in “behavioral health” rhetoric, I conclude that there is no other way but to admit that advanced capitalism is morally wrong and we have to get off that path. It is simply not acceptable for us to spend our time concentrating the power of the wealthy by building more mansions for them while basic needs of so many are not being met. It does not matter whether the rich got that way fairly or legally: it is just the existence of the enormous power differential that is not right.

Therefore, we need a vastly higher rate of redistribution downward. But the way the redistribution to the poor works is important. All that redistribution of food, transport, housing and so on has to follow the right model with all the incentives aligned. That’s how we make sure it isn’t just handouts for no reason, that it doesn’t consist of guaranteed revenue/waste for the industry, and that it is not building dependence on welfare. The purpose is to restore the means of production to everyone, not to burden the middle class with providing for the non-working poor.

Looking at public transit again, particularly in the west, it has a pretty minor effect on total transportation. But to those who rely on it, it’s extremely important: a shift in routes could cost someone their job. We can and should vastly expand public transport, but with undistorted and regulated competition so that collective intelligence steers the system, not just bureaucratic decision making. The full costs of private (car) transport need to be internalized and paid per trip, so that the systems that are actually a better value (not just those that have political support) will win in the market. (As an aside, some consider “free” markets to be unregulated, but the reason that highly regulated markets like gasoline are the most sensitive to market forces is because of the regulation, not in spite of it. “Free” is a misleading word; we should be asking for transparent, effective markets instead.)

The above is just the beginning of how one system can fit incentives better, and if the same thinking is applied to health, food, education, and housing, then the basic needs of everyone are met. By doing it the right way, all these things together can distribute the means to create wealth, not just move wealth around. And by thinking about all the other goals of humanity at the same time, we can also save lives and restore the natural environment. For example, shifting taxes to carbon emissions, land value, and transactions (rather than built value, sales, and income) as part of redesigning the transport (and other) systems can radically change the incentives to be aligned with real human needs. (Reasons for this will be saved for a future essay.) I’m putting all this together because I really believe that solving any one thing has to work towards the solution to everything – it is not possible to solve health policy (or any other focal point) in isolation or at the expense of some other focal point.

And to make this more encouraging, isn’t the process of tweaking all these redistribution systems effectively altering the course of advanced capitalism? So if you think that reigning in the global economic beast is an impossibly huge task, I would say: that task is done precisely by correcting the redistribution parameters in each of the subsystems. That makes it sound doable, doesn’t it? The short answer is: Align the way redistribution works so that by following our natural incentives, we tend to make a contribution to the solution to all human needs and problems.

Perhaps some day (even as soon as the next solstice!) we will have a shift of consciousness that unblocks love in the public sphere. Maybe we will divide all the land evenly, or stop dividing land at all. Maybe we’ll stop killing each other. Maybe we will start understanding that we are each here to unravel our spiritual purpose. The economy will shift from greed to something closer to what other civilizations have done when they experienced excess time due to efficient production: they built temples. Somehow we will learn to coordinate a grand purpose for our pluralistic times that goes beyond greed and is done without slave labor. But we can’t just sit and wait for that. Doing the adjustments to the subsystems is what we can do now.

10. Other ways to do disability redistribution

It’s far too early in my path of understanding to state clearly how I think disability policy should operate. Instead I’ll write a loose collection of principles, questions, and ideas. Hopefully you can take it from here.

  • If we can have the whole conversation separately from the insurance conversation, society may look at it differently and ask different questions. Instead of asking what intervention can alleviate the condition, we could start asking “what’s the best way to support people with disabilities”. I notice that a lot of the autism moms have the same political standpoint as the industry: they insist on heaping more requirements for paying for things on the insurers, but I think that is completely unhelpful. It needs to be a completely separate system. That will help fix the health care system by removing non-insurable occurrences from its mandate (the everything has to solve everything principle).
  • The more general services there are, the fewer specific services are needed. If the transport network operates on the level (like subways – no ramps) then we don’t need specialized services for people who use wheelchairs. In the same way, support for variance can be woven into the fabric of everything. That usually helps everyone: there are a lot more people who are losing the ability to walk far than who actually use wheelchairs, so losing the stairs is good overall. For the interpersonally disabled, clear unambiguous ways to accomplish things are a necessity, but those same improvements will help a lot more people for a huge variety of reasons.
  • A pure government model is not likely to be very effective beyond the very small scale. If the public employees are the ones actually providing the services, and they can’t be fired, there is no incentive for quality.
  • When it comes to allocating money, the party who determines the level of need must be a third party – not the service provider or the beneficiary. Since disability support does not have a strong built in incentive to limit demand, cost containment is a primary factor. If the people being paid for services are the ones deciding what services are “needed”, they will keep claiming more and more is needed, and this is a poor model to contain costs. In order to keep the market incentives intact, the role of the three parties has to be clear and distinct: The providers set their own prices and provide services in a market; the beneficiaries choose what services they need and what providers to use; and the payer determines the level of need and total available expense. The payer would be a government office with professional experience, and would be responsible for balancing the needs of many people within a budget. Because of the proper alignment of incentives and spreading out the decision making, this system will allocate money more intelligently and efficiently, and produce more value than a pure government model or an insurance model. (If the disabled person has a guardian or has granted power of attorney, then there is a fourth party to assist the beneficiary in making decisions. But this person should not also play other roles.)
  • The barrier to providing services should be relaxed so that people’s natural allies – sisters, neighbors, and other disabled people – can provide services. But the therapists and other service providers have a stranglehold on the rules, that require certain credentials. But I feel some people’s needs are far better fulfilled by people like them or close to them. For example, autistic youth might get a lot more out of spending time with robotics engineers on the weekends rather than with behavior therapists. So if they want that and it really is the support they need, they should get that choice. This idea takes advantage of the natural incentive to fulfill needs, that family and like-minded people have.
  • Benefits should be based on observation – not abstractions like diagnostic codes. It is important that the payer makes an independent knowledgeable judgment of the level of need through direct observation of the beneficiaries in their environments, and has a transparent way of setting payment levels. Some people need a lot more than others, even if they have the same diagnosis. Some people need less because of being in a more supportive environment or having some compensating skills. All disabilities can be looked at together this way; there doesn’t need to be a separate way of distributing money for different disabilities. Since the process of setting payment caps is naturally adversarial, it is important that there is a process for making a claim of need, and for making an appeal.
  • Not all benefits need to be in the same pool. Benefits may be restricted to certain kinds of services, and there can be different pools of money with different conditions. This is reasonable because the public is paying for this, so the public should be able to attach value conditions in some way. It should not necessarily be the case the the beneficiary simply gets money to use in any way they wish. One reason is that introduces the incentive for people to feign a high level of need; secondarily, it makes it too easy for some people to make poor decisions such as spending too much on alcohol and not having enough left for essentials. However, within each pool, the market incentive should be retained, using the food stamp model. So, if a person gets $200 per month towards housing, they can use that to pay for any kind of housing.
  • There should be no experts, on principle. This means no one should automatically overrule any decision based solely on credentials. The beneficiary and her family should be treated as the most knowledgeable people, and everyone else’s input is advisory only.
  • There should never be a requirement for “improvement”. A person with a permanent disability will mature and learn skills just like anyone else, and usually wants to fulfill their potential to contribute. But progress may not happen the way other people hope, or may not be visible to them, so the conditions attached to the various benefit pools should not be tied to therapeutic progress. Therapy could be one of the benefits, although therapy is more in the category of education than in disability support.
  • The redistribution system should be about rights and spending power, and not about “empowerment” the way the term is often abused to mean “I’m empowering you to make decisions as long as you are making the decisions I approve of.” The means of production (ability to build houses and other needs) should be shared by the disabled so we are not just recipients.

I’m sure I’m only touching on the potentials, and my thoughts are still boxed in. I’m wondering how the way we pay for autism would change if thoughts like the above were put into practice. Consider equestrian therapy – it is expensive, probably fun for most people, but not necessary for most. There are a few people whose lives turn around from the experience. A lot of stables are popping up for this purpose, and they seem strangely up-scale in appearance, while those receiving therapy usually pay nothing (and most could not afford the actual price of it). So what would happen to the business of equestrian therapy under my proposals? First, the payers would evaluate the need of a beneficiary based on many factors, and would allocate money for recreation in general (or therapeutic recreation). Qualified providers could include those who specialize in disabilities, or any other recreation provider. Most recipients would opt for cheaper alternatives to stretch their benefit further, so the market would shrink. Providers would have to be competitive, so their prices would go down, so no more gold-plated stables. And the link between the so-called experts and the payers would evaporate, so there would be no automatic flow of money between the payer and the facilities. More people would be making more decisions in a distributed way. Whether people evaluated the outcome of those programs as therapeutic would be up to them. The overall cost would be less.

11. The role of autistics

One of the human traits that helped build the empires we live in is group warfare – suppressing people by race, sex, or whatever characteristic they can use to force someone else to lose. That viciously competitive part of this capitalist culture requires that someone else lose, in order to win. While not everyone is equally competitive, group warfare seems to be woven in the fabric of the culture. But autistic people don’t have that trait at all, as a rule. We can’t even always distinguish between the groups that are fighting, and we don’t fight like they do. Consequently we are the losers. Now, the ruling class wants us out more than ever before. Somehow we’ve become a threat, an epidemic, a tragedy, according to big-money autism.

If there has been a culling out of autistic-minded people from the ranks of corporations and governments (which stands to reason, since where else would all the new autistics have come from?), then the world is losing a way of thinking that is dangerous to lose. Autistic people are hard to teach; we don’t believe what people say; we don’t follow the accepted ways and beliefs. Now, how did the financial meltdown of 2008 happen? Everyone started believing that housing prices would go up forever; the media reported blindly; everyone just adopted the same set of beliefs and were complacent. But what if we had not been purged? What if some of the workforce didn’t just go along like “team players” and some were stubborn and looked at the actual numbers? Would that whole crisis have been averted?

The simple and liberating fact of the economy is that we can have abundant wealth for everyone if we just distribute our time differently, so that more people are spending more time on things that matter, and less time on waste. When it comes to setting up an economy along rational lines though, it is impossible for those deeply competitive people who insist on someone else losing to see how this can be done, or to even want it to be done. Despite what the talking heads say, it is not a system of workers versus freeloaders. Most of what the paid workers do is every bit as useless as what the so-called freeloaders do, and half the work done is not even paid at all (think of all the childcare and building and fixing that you don’t pay someone to do for you). In reality it is a complex interdependent system and value is not necessarily correlated to payment. Having a “job” in this system is in no way equivalent to “pulling your weight”.

I feel we are not only not a problem; we are a solution. The problem is not how to cover the enormous “costs” of autism; the problem is that the economy is not set up compassionately. It’s not about us; it is more about the ability of others to accept us. And when I talk about being a solution, I’m not just talking about so-called “mildly” autistic people. If we let go of assumptions even about people who don’t speak at all, who you may not understand at all – if you let go of forcing low expectations on us, then we will stop being a problem for you. But it’s not going to work to beg people to just accept us. I feel there is much more potential for progress by adjusting the payment model than by just changing the message. We need to improve the way the redistribution system works for us, and how it harnesses natural incentives and yields the means to create wealth. Getting out of poverty as a class could mean that we develop the means to fulfill our needs as a class, by setting up trade with each other. And it feels like if we develop some class consciousness, we will create bigger solutions for ourselves and the whole of the economy.

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