"Lifetime Social Cost"

In The Politics of Autism, I discuss costs and benefits of autism services.

Janet Cakira and colleagues have an article in  Research in Autism Spectrum Disorders titled "The lifetime social cost of autism: 1990–2029."

Highlights

• This study applies existing data on population, prevalence, and the cost of meeting the needs of individuals with ASD to estimate the lifetime social cost for the United States and each of the 50 states 1990–2029.
• ASD is associated with approximately $3.6 million in lifetime social cost.
• The lifetime social costs to date are more than $7 trillion, the equivalent of about two years of total federal revenue for the United States.
• By 2029, If prevalence remains the same, the cost will grow to $11.5 trillion, and if prevalence continues to increase at the past rate, the cost will grow to nearly $15 trillion.
• A variety of approaches in the field of vulnerability assessment and risk management could be used to identify known modifiable risk factors that could potentially reduce rates, thereby reducing costs.

Abstract

This cost of illness analysis computes a baseline and future estimate of lifetime social costs associated with autism spectrum disorder (ASD) for the 50 states in the United States (US). The number of cases of ASD are estimated, then multiplied by annual direct and indirect medical and non-medical costs identified in the peer-reviewed literature. This amount is then extrapolated across the number of years each cost type is expected to be incurred to calculate a total lifetime cost for each state in the US from 1990–2019, and to project future cost for 2020–2029. From 1990–2019, there have been an estimated 2 million new cases of (ASD), with social costs of more than $7 trillion. If the future prevalence of ASD remains unchanged over the next decade, there will be an estimated additional 1 million new cases, resulting in an additional $4 trillion to the United States in social costs, however if the rate of increase in prevalence continues, costs could reach nearly $15 trillion by 2029. The financial burden of ASD is significant and identifying the modifiable causes of ASD has the potential to provide tangible benefits.

 The framing of "social cost of autism" is controversial.  An alternative frame is "social cost of failing to accommodate people on the spectrum"  As Ari Ne'eman once said:

And let's say that person does not get what they need in order to work. Would your model attribute those lost earnings, the cost of those lost earnings, to autism, to that individual's being on the autism spectrum, or would your model attribute the costs to lack of support or lack of accommodations or to discrimination?

Economic Costs of Autism

In The Politics of Autism, I discuss costs and benefits of autism services.

Nicky Rogge and Juliette Janssen have an article at Journal of Autism and Developmental Disorders titled The Economic Costs of Autism Spectrum Disorder: A Literature Review

The abstract:

Autism is associated with a range of costs. This paper reviews the literature on estimating the economic costs of autism spectrum disorder (ASD). More or less 50 papers covering multiple countries (US, UK, Australia, Canada, Sweden, the Netherlands, etc.) were analysed. Six types of costs are discussed in depth: (i) medical and healthcare service costs, (ii) therapeutic costs, (iii) (special) education costs, (iv) costs of production loss for adults with ASD, (v) costs of informal care and lost productivity for family/caregivers, and (vi) costs of accommodation, respite care, and out-of-pocket expenses. A general finding is that individuals with ASD and families with children with ASD have higher costs. Education costs appear to be a major cost component for parents with children with ASD.

From the article:

Based on the studies reviewed, the overall lifetime costs for individuals with ASD are estimated to be situated somewhere between $ 2.4 million (in 2011 US$) (Buescher et al. 2014) to $ 3.2 million (in 2003 US$) (Ganz 2007) for the US and from £ 1.5 million (in 2011 £) (Buescher et al. 2014) to £ 2.4 million (in 1997–1998 £) (Järbrink and Knapp 2001) for the UK. As a total figure for the US, Leigh and Du (2015) estimated annual direct medical, direct non-medical, and productivity costs combined to be $268 billion (range $162–$367 billion; 0.884–2.009% of GDP) for 2015 and forecast this cost to be $461 billion (range $276–$1011 billion; 0.982–3.600% of GDP) for 2025. Moreover, as pointed out by some studies, reported cost estimation figures are likely to underestimate true ASD-related costs due to omitted health impacts, omitted economic impacts, omitted impact on social life, and the costs of health actions in other sectors.

...
[T]he cost of (special) education, EIBI and therapy, individual productivity loss, parental productivity loss, and (supported) accommodation and residential care are among the largest contributors to total lifetime costs for an individual with ASD. The recent anonymous online survey for children and adults with ASD organized across multiple EU-countries in a large-scale project (ASDEU 2018), found similar results, with the cost of special education services being the highest cost component, followed by the costs of tutorial support, especially among younger people with ASD. Medical and healthcare costs related to ASD have been found to constitute only a small part of the total costs for individuals with ASD, with medical costs being higher for adults with ASD than for children with ASD. Estimates also show that smaller out-of-pocket expenses related to ASD, such as travel costs, cost related to making the house more ASD-friendly, purchase of specialised tools or equipment, etc., cannot be ignored when analysing the costs related to ASD. Summed together, all these out-of-pocket expenses can place a significant financial burden on the family budget. As to the costs of ASD-related therapies, due to the differences in therapy categorization and widely divergent cost estimates for ASD therapies, it is difficult to get a clear picture of the costs of therapy and/or EIBI programmes for individuals with ASD. Nevertheless, the studies that assessed the cost-effectiveness of EIBI for (young) children with ASD found that such therapy programmes are cost-effective and can result in cost savings throughout the lifetime of individuals with ASD.

The Costs of Caring

It is important not to see ASD people as "costs."  They can make great contributions to society.  Nevertheless, the costs of caring for people with autism -- especially children -- deserve frank attention.  Jeff Howe, the journalist who coined the term crowdsourcing, has a son named Finn, who is on the spectrum.  He writes at Money:

What we share in common with the parents of all those special-needs children is that our kids have almost nothing in common: Within the "autism spectrum" alone there is far more diversity than there is within the rest of the human population. As one clinical psychologist told me, "Saying you study autism is like saying you study the world of non-elephant animals."

Special-needs parents do share one thing: the eviscerating cost of our children. It's one of the awful ironies of this unchosen life. Not only do we divorce more frequently [not accurate -- ed.] and suffer from more mental health problems, but we pay dearly for the privilege.

... 

Well before Finn hits 22, a wave of disabled children will "age out," requiring massive amounts of state assistance. So just as baby boomers start putting unprecedented stress on government benefits, a slightly smaller but still significant population of disabled people will be in need of government help too.

"People assume the state will be there to help with their child," [financial planner John] Nadworny says, "but that's a really risky bet."
...

The final frontier for us (and, I suspect, many other families like ours) is to create a will and trust for our children. This is not straightforward. There are specialized vehicles that provide for the care of a kid like Finn without endangering his government benefits. There is also, critically, something called a letter of intent, which spells out the terms of care for a person who can't express those needs himself. But someone needs to serve as trustee; another person needs to serve as guardian.

How do you ask even a close family member to shoulder what we have taken on? There is, in our case, no obvious contender and no obvious solution.

The Economic Impact of Autism

Previous posts have dealt with the economic impact of autism on families and individuals. Laura McKenna writes at The Atlantic:

However, once the parent overcomes that grieving process, they have to endure a lifetime of smaller cuts. The therapy, which is so necessary for the child's success, is very expensive. Parents will fight insurance companies and school districts to cover the costs. Often, they are unsuccessful, and they must deplete family bank accounts. They face hostile school districts and community members who accuse the family of stealing their children's money. Families become drained both emotionally and financially.

Working on their children's behalf becomes a full-time job. One parent, often the mother, either stops working or works less hours, in order to manage the educational and therapy of the child. She must shuttle the child long distances to find the right services. She must navigate the health care bureaucracy. She must meet frequently with teachers and constantly negotiate with the school district to get the therapy that their children need.

In an article in USA Today, Ricardo Dolmetsch, an associate professor of neurobiology at Stanford University, says his son's autism diagnosis has changed both his personal and professional life.

This work was made more difficult, Dolmetsch says, by the fact that caring for a child with a disability is a full-time job. Although his wife, neurobiologist Asha Nigh, supports his research, such as through managing projects and writing grant proposals, she has put her own scientific career on hold in order to care for their son and his brother, age 7. In his opinion, Dolmetsch says, his wife has earned an honorary doctorate "in getting insurance coverage for stuff."

"The finances of autism are brutal," Dolmetsch says. "The amount of continuous care these kids need is a lot. ... The only thing that works at all are behavioral treatments," which, depending on the state and one's health plan, may not be covered by insurance, he says. "They're very intensive... and they're horrifyingly expensive."

Autism Speaks Surveys Federal Action and Inaction

An open letter from Peter Bell of Autism Speaks:

Almost two months have passed since the Centers for Disease Control and Prevention (CDC) released the shocking results of its latest prevalence study—1 in 88 American children, 1 in 54 boys, now has an autism diagnosis. This news was accompanied by the release of an Autism Speaks/Goldman Sachs study, which estimates the annual cost of autism in the U.S. has soared to $137 billion, a burden borne in large part by families. These statistics confirm what we have known for some time: AUTISM IS A PUBLIC HEALTH EMERGENCY THAT DEMANDS URGENT ACTION. We need a national plan to meet the challenge. We need a coordinated, strategic approach, among all federal agencies and the administration, to ensure that funding and research for autism is adequate, focused and effective.

These developments mark a reversal in positive momentum since last September when President Obama signed the Combating Autism Reauthorization Act (CARA), which extended the federal investment in autism at current levels over the ensuing three years. As part of CARA, the Interagency Autism Coordinating Committee (IACC), which steers federal autism research, was to be reconstituted. The new IACC not only has yet to meet, its first meeting won’t be held until July 10th – a full nine months after CARA became law. That’s exactly 25% of the way through the three year authorization period. In the midst of the autism epidemic, this is an unconscionable situation. Where’s the urgency?

Unfortunately, a coordinated, strategic approach to autism has yet to materialize. A $21.3 million annual appropriation authorized under CARA for the CDC to continue tracking autism prevalence, to research the multiple causes of autism and to promote early detection is now in jeopardy as a result of the current federal budget process. The White House broke with established procedure by placing the appropriation within the politically sensitive Affordable Care Act in President Obama’s proposed budget for fiscal year 2013. The appropriation is now in danger of failing due to politics, rather than any debate over its merits. There was no reason to inject the CDC funding into a political debate that has nothing to do with autism. There is no room for politics in autism. 

Our concerns don’t stop there. In structuring the Affordable Care Act of 2010, Congress made it very clear that behavioral health treatments, including applied behavior analysis for autism, must be a part of the Essential Health Benefits package. Every health plan offered through the state exchange system is required to include these benefits by 2014. The Department of Health and Human Services (HHS), which is charged with implementing the law, needs to urge policymakers at all levels of the government to abide by the intent of the Congress. Senator Robert Menendez of New Jersey, who had the language inserted in the version of the bill that became law, along with Representative Mike Doyle, other members of Congress, and Autism Speaks, have pressed the Obama administration on this oversight, but our shared concerns have yet to be addressed.

As these concerns from the autism community mount, we have watched the White House roll out a bold new plan for fighting Alzheimer’s that is commendable both in spirit and in purpose. The “National Plan for Addressing Alzheimer’s Disease” was launched in early 2011 and has already resulted in a large infusion of additional funding ($150 million) to support research, provider education and public awareness. Last week, HHS Secretary Kathleen Sebelius announced even more actions including the funding of two major clinical trials, the development of new training for clinicians, and a new public education campaign and website to help families and caregivers find the services and support they need. We commend the administration for taking these bold steps to fight a medical condition that severely impacts millions of Americans during the final years of their lives. Those affected by autism need and deserve a similar focused and committed strategy from the federal government.

On matters of policy and funding, Autism Speaks and the autism community have succeeded when we’ve made our voices heard. Our active and growing grassroots base of advocates has been there when we issued the call to rally. We will continue to press our case with the Obama administration and members of Congress as events unfold this year. We ask that you join with us in this important effort. You can help by following our messages, staying informed by visiting our Autism Votes website, signing up to receive updates and continuing to respond when there is a need to take action. As always, we thank you for your unwavering support in advocating for the autism community.

Autism and Cost

Autism Speaks reports:

Autism Speaks, the world’s leading autism science and advocacy organization, today announced preliminary results of new research that estimates autism costs society a staggering $126 billion per year (U.S.) – a number that has more than tripled since 2006, and annually in the U.K. has reached more than £34 billion (equivalent to $54 billion U.S.). The costs of providing care for each person with autism affected by intellectual disability through his or her lifespan are $2.3 million in the U.S. and £1.5 million ($2.4 million) in the U.K. The lifetime costs of caring for individuals who are not impacted by intellectual disability are $1.4 million in the U.S. and £917,000 in the U.K. (equivalent to $1.46 million). The Autism Speaks-funded research, conducted by researchers Martin Knapp, Ph.D., of the London School of Economics, and David Mandell, Sc.D., of the University of Pennsylvania, will be presented at the international conference “Investing in our Future: The Economic Costs of Autism,” hosted by Goldman Sachs in collaboration with the Child Development Centre and Autism Speaks, on March 31 in Hong Kong.

A New Book

A new edited volume on autism -- full text available online -- contains valuable perspectives from Iran, Africa, and other places across the globe.

A Comprehensive Book on Autism Spectrum Disorders, edited by Mohammad-Reza Mohammadi

The aim of the book is to serve for clinical, practical, basic and scholarly practices. In twentyfive chapters it covers the most important topics related to Autism Spectrum Disorders in the efficient way and aims to be useful for health professionals in training or clinicians seeking an update. Different people with autism can have very different symptoms. Autism is considered to be a “spectrum” disorder, a group of disorders with similar features. Some people may experience merely mild disturbances, while the others have very serious symptoms. This book is aimed to be used as a textbook for child and adolescent psychiatry fellowship training and will serve as a reference for practicing psychologists, child and adolescent psychiatrists, general psychiatrists, pediatricians, child neurologists, nurses, social workers and family physicians. A free access to the full-text electronic version of the book via Intech reading platform at http://www.intechweb.org is a great bonus.

Two chapters are of particular interest to those who follow public policy:

• "The Financial Side of Autism: Private and Public Costs," by Deanna L. Sharpe and Dana L. Baker. "This article reviews what is currently known about the type, amount, and distribution of autism-related financial costs relative to family and society. Estimates of the broad social costs of autism are compared. Components of the financial burden on family members are examined. Current avenues to sharing some of this financial burden with the public and private sector are reviewed. The article concludes with recommendations for future research."
• "Autism Spectrum Disorders and the Criminal Law," Ian Freckelton." This chapter explores issues arising in the criminal law for persons with the Autism Spectrum Disorder that most often arises in criminal law proceedings: Asperger’s disorder, often described as high functioning autism. It does so by analysing recent court decisions in a number of countries and reflecting upon the extent to which expert evidence is enabling courts to evaluate effectively the ramifications of the disorder within the context of determining criminal responsibility and culpability."

Mandate Proposal in Alaska, and the Cost of Autism

In the Anchorage Daily News, Alaska state legislator Pete Petersen makes a case for his insurance mandate legislation: "If children receive intervention treatment before the age of 4, many of them go on to live productive lives comparable to those without a developmental disability. It is projected that nearly $3.2 million in social service costs per person can be saved over their lifetimes with effective early treatment."

Early intervention does pay long-term dividends, but there are a couple of problems with this specific claim.

The figure of $3.2 million apparently comes from the work of Michael Ganz of the Harvard School of Public Health: "the total annual societal per capita cost of caring for and treating a person with autism in the United States was estimated to be $3.2 million and about $35 billion for an entire birth cohort of people with autism." But when Ganz writes of "societal per capita cost," he is not just talking about "social service costs." He explains that it includes much, much more:

The total costs of autism equal the sum of its direct and indirect costs. Direct costs measure the value of goods and services used and indirect costs measure the value of lost productivity due to autism. These direct and indirect costs represent the value of other activities that these resources could have purchased (i.e., opportunity costs). Physician and other professional services, hospital and emergency department services, drugs, equipment and other supplies, and medically related travel and time costs are typical components of direct medical costs. Direct medical costs were obtained either from the literature or from an analysis of the Medical Expenditure Panel Survey (MEPS) and the National Health Interview Survey (NHIS). Special education, transportation, child care and babysitting, respite care, out-of-home placement, home and vehicle modifications, and supported employment services are typical components of direct nonmedical costs. Nonmedical costs were obtained from the literature. Multiple cost estimates within categories were averaged to obtain a single cost estimate for each category. Indirect costs are the value of lost or impaired work time (income), benefits, and household services of individuals with autism and their caregivers because of missed time at work, reduced work hours, switching to a lower-paying but more flexible job, or leaving the workforce. Indirect costs were computed using a human capital approach that combines average earnings, benefits, and household services with information on average work-life expectancies and labor force participation rates for men and women at different ages.

Second, saving the $3.2 million is possible only when the treatment is so totally effective that the autistic person needs no further intervention, ever. That assumption is highly optimistic.

Again, advocates are wise to point out the cost-effectiveness of early intervention. But they should take care not to overstate their case or distort the data.