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Summary of Advances Cover 2014
Summary of Advance
In Autism Spectrum Disorder Research
2014
Question 5: Where Can I Turn for Services?

Costs of autism spectrum disorders in the United Kingdom and the United States
Buescher AV, Cidav Z, Knapp M, Mandell DS. JAMA Pediatr. 2014 Aug; 168(8): 721-8. [PMID: 24911948]

Most previous estimates on ASD’s economic costs to society were narrow (focusing largely on health care) and based on data that have since been updated and refined. This study expanded cost estimates to areas other than health care, estimated lifetime costs, and provided comprehensive costs associated with ASD in the United States and the United Kingdom. To estimate comprehensive lifetime costs in two countries, researchers conducted a literature review of peer-reviewed studies and consulted other sources of data to compile updated information on ASD prevalence (how many people have ASD), how many people with ASD also have intellectual disability, average lifespan, and place of residence. They also gathered data on the types of medical and nonmedical ASD services people with ASD use, as well as indirect economic factors, such as productivity loss for individuals with ASD and their caregivers. The researchers used the data to calculate the average annual medical, nonmedical, and indirect economic and lifetime costs borne by individuals with autism, their families, and society. To have the most accurate costs estimates, researchers estimated them separately for individuals with and without intellectual disability (ID), which can greatly increase costs. The researchers estimated the number of people with ASD in the United States and United Kingdom as approximately 3,541,000 and 604,800, respectively. Lifetime costs of supporting an individual with ASD and an intellectual disability were estimated at $2.4 million in the United States and £1.5 million (US $2.2 million) in the United Kingdom. The lifetime costs of supporting an individual with ASD who does not have an intellectual disability was $1.4 million in the United States and £0.92 million (US $1.4 million) in the United Kingdom. The researchers estimated that 40–60% of children with ASD also have ID, and concluded that the total annual cost of supporting children with ASD is about $4.5–5 billion (£3.1–3.4 billion) in the United Kingdom and $61–66 billion in the United States. The researchers found that the largest contributors to total costs in both countries for children were direct nonmedical costs, such as special education (including early intervention services), and indirect nonmedical costs, such as parental productivity loss. For adults with ASD, again assuming that 40–60% have ID, the researchers estimated total annual costs (minus benefit payments) of $175–196 billion in the United States and $43–46 billion (£29–31 billion) in the United Kingdom. The largest contributors to total costs for adults with ASD in both countries were accommodation (residential care or supportive living accommodation), followed by direct medical costs, and individual productivity loss. The study found that medical costs for adults are much higher than for children in both countries. These estimates of lifetime societal costs associated with ASD are much higher than found in previous studies, although the per person costs were less than those estimated in the most recent prior study that used a similar approach (Ganz, 2006). These findings are relevant for numerous policy considerations, such as those regarding lifelong supports for ASD (including residential concerns), as well as policies supporting caregivers, particularly addressing disrupted employment.

Economic burden of childhood autism spectrum disorders
Lavelle TA, Weinstein MC, Newhouse JP, Munir K, Kuhlthau KA, Prosser LA. Pediatrics. 2014 Mar;133(3):e520-9. [PMID: 24515505]

The prevalence of ASD among children in the United States has grown quickly over a short period of time. Despite the increased proportion of children diagnosed with ASD and the specialized health and education services they require, there has not been a comprehensive cost analysis that accounts for the range of services used. Past studies have assessed primarily health care-related costs, although there are indications that costs unrelated to health care may also be significant contributors to the total economic burden of ASD. To get a broader and more complete economic picture of the costs of ASD during childhood, researchers in this study sought to estimate utilization and costs associated not only with health care, but also with education, ASD-related therapy, family-coordinated services, and caregiver time. The study included families with children age 3 to 17 years old with ASD. Families in control groups had no reported ASD. Estimates of costs related to health care were obtained using data from the CDC’s National Health Interview Survey and the AHRQ’s Medical Expenditure Panel Survey, including 109 subjects in the ASD group and more than 18,000 in the control group. Estimates of non-health care related costs were obtained using a large, national panel survey including more than 137 respondents in the ASD group, and 121 respondents as controls. The researchers found that children with ASD used more health care, education services, ASD-related therapy, and family coordinated services compared with controls. Regarding usage of the health care system, the children with ASD made significantly more visits to physician and non-physician offices compared to children in the control group; children with ASD also showed a higher level of prescription medication usage. When other services were assessed, the researchers found that, compared with the control group, the children with ASD were more likely to attend public school (versus attending private school) or be home schooled, to participate in special education programs, and to use tutoring services. ASD-related therapy, such as applied behavior analysis or sensory integration therapy, was reportedly used by 31% of the ASD group. The two groups did not differ significantly in caregiver time.

The researchers calculated that caring for a child with ASD can cost more than $17,000 per year more than caring for a child without ASD, but only 18% of these costs were associated with increased use of health care. Specifically, ASD was associated with $3,020 higher health care costs and $14,061 higher aggregated non-health care costs. However, after controlling for epilepsy and intellectual disability, health care costs did not significantly differ between the two groups. The majority of costs not associated with health care were related to education ($8,610 annually). The researchers found that higher costs of schooling in families with ASD were associated with their much higher use of special education services, including in public schools. Not surprisingly, costs increased as ASD severity levels increased. In contrast with previous studies, this study did not find that parents of children with ASD spent more time caregiving or had more out-of-pocket expenses compared with control groups, except in cases of severe autism. In sum, researchers estimated that the total societal cost of ASD during childhood in the United States is $11.5 billion annually, with a large proportion of this cost attributable to the special education services offered by public schools. Recognizing the crucial role of public schools in the provision of ASD services can help ensure that policies and funding meet children’ s needs.

Question 5

 
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