Welfare Statism Is Getting in the Way of Solving the Riddle of Autism
Government programs are hurting today’s, and dooming tomorrow’s, autistic children and adults
In a heartbreaking article for The Free Press, mother of two profoundly disabled autistic children and president of the National Council on Severe Autism, Jill Escher, sounds the alarm that the quest to find a cure for the disease/disorder is faltering:
It’s not your imagination: the field is stagnating in the wake of wave after wave of unsuccessful attempts to understand the origins of autism, or to alter its trajectory.
The recent rise of the “neurodiversity” identity movement, where autism is reinvented as a natural difference to be celebrated, not investigated, prevented, or treated, has helped spread a fairy dust of complacency over the autism world. While rates continue to climb—to 1 in 36, or nearly 3 percent, of all eight-year-olds by the latest count from the Centers for Disease Control and Prevention (CDC)— the world, except of course for parents like me, seems to be waving a white flag of surrender. It’s become de rigueur to normalize autism rather than treat it as the national emergency it most certainly is.
Apart from criticizing the “neurodiversity” identity movement’s attempts to whitewash autism and the resulting complacency in the medical and scientific communities, Ms. Escher presents a number of concerns facing parents of profoundly autistic children (children who are not intellectually or physically able to function independently):
autism rates are increasing dramatically, with 0.5% of all American children—one in 200—considered profoundly autistic, having an IQ less than 50
minimum wage (federal and state) laws are closing the few opportunities autistic children have of getting a job, as their value to an employer is less than the legal minimum wage limits
housing is largely unavailable for autistic adults who need around-the-clock care
as a society's we’re woefully unprepared for the fact that parents—who are overwhelmingly the caretakers—won’t live forever, and somehow their profoundly autistic children have to be cared for after they die, which will cost hundreds of billions of dollars.
Many if not all of the concerns are tragic consequences of decades of welfare statist government policies here in the U.S. (and around the world). These policies have effectively suffocated or killed most private initiatives that very likely would have eased the suffering and, not improbably, solved the riddle of autism by now.
Two of the main welfare statist culprits here in the U.S. are the Social Security Income (SSI) disability benefits for a child, and state administered programs for individuals with physical or developmental disabilities under the Medicaid umbrella.
SSI is administered by the Social Security Administration (SSA) and began operations in 1974. It was created to replace federal-state adult assistance programs that served the same purpose. Under the program, children under the age of 18 can be determined to be disabled for SSI purposes
if the individual has a medically determinable impairment or combination of impairments that causes marked or severe functional limitation(s), and can be expected to result in death, or has lasted or can be expected to last for a continuous period of not less than 12 months.
Profoundly autistic children qualify under this definition. In 2021, the average income per child received from this program was $687.17/month, with $794/month being the max amount (For 2023, the max amount increased to 941/months due to inflation indexing).
One of the requirements to receive SSI is that the disabled person’s income and assets must be below certain limits. The rules to qualify—and ways around them—are convoluted as with all government programs, but highly generalized, for 2022, an individual beneficiary could not earn more than $1,767 per month in wages or have more than $2,000 in assets.
Using my home state of Colorado as an example, children with disabilities may additionally qualify for a number of Medicaid related programs. If my reading is correct (it's a maze of rules and regulations that is difficult to wrap your head around), these programs appear to provide certain services free of charge (no co-pay). The financial qualifications are similar to SSI, requiring that the income of the disabled person does not exceed 300% (3 times) the aforementioned SSI allowance per month and, like SSI, assets are below $2,000.
The welfare statist programs, here represented by SSI and Medicaid, constitute for all intents and purposes a government monopoly. Parents with profoundly autistic or otherwise disabled children have no other options for financial and other relief. If they qualify, the amounts/services cover in most cases only a fraction of the time and cost incurred in caring for the child. And if the child doesn’t meet the income and asset thresholds, the parents are basically on their own, facing an insurmountable financial and time burden on top of the emotional toll.
Many disability advocates argue that the government needs to up its game and ease the financial burden for autistic children and their families. But forcing a government financed and regulated monopoly on autistic and other disabled children and their parents is already a violation of individual rights:
The rights of children and their parents are violated as they have no other recourse than to turn to the government for support whether they like it or not, and
the rights of taxpayers are violated as we are forced to pay for the government programs we may not support.
Doubling down on welfare statist policies by expanding the government monopoly only pours fuel on the fire without solving the problem.
What does a solution look like that doesn’t violate individual rights? Let me first paint a picture of how I think autism and other disabilities may be dealt with in a free society without individual rights violations, without government force and without a government monopoly on care and financial support, and then discuss how we may get from here to there, from today’s broken system to the shining city on a hill.
Central to having a child in a free society will be a pregnancy insurance policy that covers unforeseen, potentially financially ruinous events such as the child being born with or developing a disability (don’t confuse this with today’s limited pregnancy insurance that is part of many health insurance plans and covers unforeseen complications during pregnancy and childbirth, but not disabilities). Once a functioning market for such insurance has been in place for a while, policies will be affordable as a relatively small percentage of children are impacted, and as many insurance companies compete on both price and quality for the business of prospective parents (premiums may initially be higher until a cure for autism has been found. See below). In the unfortunate event the child is born with or later develop a disability, the insurance policy covers the necessary financial costs for all aspects of caring for the child, from medical care to vocational training, housing, and in severe cases, possible institutional care. Premiums may vary due to the genetic makeup of the parents; if one or both carries an inheritable condition, the premiums will be higher, if not, lower.
Furthermore, in a free society, it is in the insurance companies’ financial interest to partner with private research institutions and diagnostic and pharmaceutical companies to
develop tests that identify disabilities in the early stages of pregnancy, allowing for prenatal medical intervention or termination when called for, and
find cures for disabilities that the child is born with or develops later in childhood or adolescence.
Additionally, for children with disabilities, the insurance companies will team up with hospitals, medical device manufacturers and disability advocacy groups to develop and refine treatment protocols to ensure the best possible quality of life for disabled children and their families. Absent today’s government monopoly on both financial support and care (the latter when parents are unable to care for their child or are diseased), a vibrant marketplace develops where many different approaches are tested. Over time, best practices for care will develop, and cures will be found, at a rate that would astound us today, not unlike what we’ve seen in the mostly free information and technology sectors over the past 50 years.
Finally, in the free marketplace of ideas, the “neurodiversity” movement would have a hard time taking hold. Research institutions, and insurance, pharmaceutical, diagnostic and other companies, that embrace such ideas would soon find themselves losing market share to others who are focused on curing, not explaining away disabilities.
How do we get from here to there, from today’s travesty to tomorrow’s shining city on a hill? Here are a few of my thoughts, but there are surely others as well:
Enable insurance companies to offer pregnancy insurance as outlined above by removing all existing government (federal and state) regulations. Initially, premiums may be fairly high because of the rise in autism. This will send important signals to prospective parents, who may want to think twice before having children, or hold off until a cure is available or the prevalence has come down. The higher premiums will also be a signal to the marketplace actors to invest in research to cure autism and other disabilities.
Set a future date, for instance 5 years out, when children born with disabilities are no longer eligible for SSI, Medicaid or any other government (federal and state) disability program. 5 years should be enough time for a pregnancy insurance market to develop, offering parents comprehensive disability policies.
Continue the current government programs for children with disabilities conceived or born before the 5-year deadline. As the vibrant marketplace for care and support develops, it may at some point be worthwhile to offer parents a financial lump-sum or annuity that allows them to shop around for support of their disabled offspring for the rest of its life. This would allow the government to exit the field before the last supported disabled individuals have passed away.
Finally, repeal all federal, state and local minimum wage laws to give disabled adults who can hold down a job a chance to develop a sense of pride through productive work.
Few on either the political right or left are keen on touching this subject to my knowledge. Parents of autistic and otherwise disabled children don’t seem to be a large enough constituency for politicians whose main purpose is to get reelected. But in terms of thinking morally right or wrong, not politically left or right, there is no doubt that advocating for more freedom and respect for individual rights in preventing, curing and caring for disabilities is the moral path forward.
What do you think? Am I making sense or am I living in LaLa land? Do I have my facts right? Do you have any other suggestions that will take us from here to there? I look forward to your feedback in the comments.
As always, you have found another place where applied reason and self-interest will solve an intractable problem. Only self-interest ever improves anything, and only self-interest while using reality based on reason ever solves any problem. Given the number of people affected by this problem, there appears to be plenty of self-interest involved to easily motivate many people to solve it with everyone coming out ahead. And I don't think either an Amish society or the destruction of millions through the banning of vaccination qualify as either self-interested or rational. No, you are not in La La Land, but way ahead of the rest of us!
A few decades ago the autism rate was one in several thousand, it's expected to soon reach one in two. This means half the people will soon be considered mentally retarded.
If we're to have a future we need to stop destroying the minds of the young through the vaccines which are causing this. The Amish are anti-vax and have zero autism. We need to put an end to this doctor administered Auschwitz.