Long Island Behavior Analysis Conference

Examining the Impact of H.R. 3054: The Global Autism Assistance Act of 2013

The Global Autism Assistance Act of 2013, known as H.R. 3054, is designed to provide training and education to teachers in developing countries with intervention and prevention treatment plans for children diagnosed with an autism spectrum disorder (GovTrack, 2014). It was introduced by Republican Representative Chris Smith of New Jersey and co-sponsored by Democratic Representative Mike Doyle of Pennsylvania on August 2, 2013, because of an increasing prevalence rate of the autism disorder throughout the world (GovTrack, 2014). Autism is an important issue based on the Center for Disease Control and Prevention research data from the year 2000 when the prevalence rate of autism had been 1 in 200 in U.S. children. Since then, the prevalence rate has climbed to 1 in 68 in U.S. children who are diagnosed with the autism spectrum disorder (Center for Disease Control and Prevention [CDC], 2014). This is important because the causes of the autism spectrum are unknown, and there is currently no cure for the developmental disorder (Autism Speaks, 2012). The autism disorder affects all people regardless of race, ethnicity, and social economic status as represented in the CDC data (CDC, 2014). Although the prevalence rate of the autism disorder is rising in developed countries, such as the United States, there seems to be a lower prevalence rate in developing countries, such as China, Nigeria, and other developing countries.

Treating autism spectrum disorder is costly, which can create a financial burden to the families of the autism disorder and the United States as a nation, with average costs in the U.S. to be estimated at $137 billion for services to treat the developmental disability (Diament, 2012). Researchers at the University of Pennsylvania and the London School of Economics found that a child who has autism with an intellectual disability would cost, on average, $2.3 million dollars in the United States for lifetime care, whereas a child with autism without an intellectual disability would cost, on average, $1.4 million dollars in the United States for lifetime care (Diament, 2012). The rising concern of the autism spectrum has a greater impact on families financially and emotionally because of the expenses to receive services for their children of the autism disorder (Autism Speaks, 2012). President Mark Roithmayr of Autism Speaks emphasized the need for the health insurance companies to cover services for the autism spectrum, because many families are denied coverage which can force families to pay out of pocket expenses regardless of their economic status (Autism Speaks, 2012). Research has shown that the autism spectrum treatment is expensive for both direct medical care and non-medical care, and the non-medical care accounts for a larger proportion of the costs to care for individuals with the autism disorder (Autism Speaks, 2012).

Nongovernmental organizations, such as Autism Speaks and The Autism Society of America (ASA), believe that early intervention and prevention planning can help offset costs in the long term (ASA, 2014). Research shows that early diagnosis of autism reduces lifetime costs by two-thirds with access to effective treatment plans for the autism spectrum disorder (ASA, 2014). When access to treatment plans are limited or minimized, it can be overwhelmingly difficult on the families as many have to adjust their work schedules to accommodate services financially (Autism Speaks, 2012). An article in CNN money explained the harsh realities of life with autism when health insurance companies do not provide accurate information on what services are covered and the fees associated with treating the autism disorder (Dickler, 2012). Families tend to take out loans, find a second job, or ask for donations because of the costs of treatments that are not covered by their health insurance, even after President Obama had signed into law the Affordable Care Act of 2011 (Dickler, 2012). Although treatment plans can be expensive, most of the costs tend to go into adult care for mental illnesses. Autism Speaks and the Autism Society of America elaborate how many children end up in adult day care centers because they were not able to receive treatment plans at an early age or that their families were unable to afford coverage of the autism disorder (Autism Speaks, 2012).

Todd Datz (2006) stresses the need to allocate resources towards intervention and prevention options. Michael Ganz, who is the assistant professor at the Harvard School of Public Health, believed that the current data of how much autism care would cost can vary between direct medical and non-medical care (as cited in Datz, 2006). Ganz believes that the reason for high costs is because of a wide range of services; however, with further research to utilize what treatment plans are the most effective forms of treating the disorder, it could create less of a financial challenge for the family (Datz, 2006). There is currently no known cure for autism, and it tends to be more common in boys than in girls (Datz, 2006).

There is a concern about the differences in prevalence rates between developing and developed countries in an article of the Harvard College Global Health Review (Maguire, 2013). In many post-industrial, developed countries, many are experiencing an increase autism spectrum prevalence rate; however, in a developing country such as China, it is estimated that 1.1 in 1,000 children are diagnosed with an autism spectrum disorder. This brings to question: why there is a difference in prevalence between developed and developing countries (Maguire, 2013)? Maguire believed that the reason for the differences is because many developed countries have better autism spectrum detection and services that provide intervention and prevention treatment plans. In many developed countries, doctors have more experience and are familiar with autism spectrum disorders, health services provide early detection and intervention plans, and many families are becoming increasingly aware of the pervasive disorder (Maguire, 2013). Developing countries do not have healthcare professionals, who are trained and experienced in the field of the autism disorder. Many of them do not have the necessary medical capabilities to diagnose a child with autism, which could be a factor as to why the prevalence rates are low in the developing countries (Maguire, 2013).

Maguire believed that differences in culture may play a factor into why the prevalence rates are low in developing countries compared with developed countries. An example is in South Korea, where having a child diagnosed with an autism spectrum disorder is a stigma that forces families to avoid having treatment or early detection of the developmental disorder (Maguire, 2013). Other countries, such as India, believed that it was natural for males to speak later on in life; however, evidence may show that they suffer from a language impairment which is associated with the autism disorder (Maguire, 2013). With cultural differences in their perspective of autism, there needs to be more educated and trained professional to help utilize treatment plans with cultural awareness, and reduce costs of the disorder at the global level (Datz, 2006).

The current status of the Global Autism Assistance Act of 2013 (H.R. 3054) includes the prevalence rates are for children of autism, how autism is defined by Congress, and the effectiveness of early detection, intervention, and prevention treatment plans (CongressGov, 2014). The legislation allows large nongovernmental organizations, such as Autism Speaks and the ASA to lead autism cause and provide funding to medical clinics with experience in diagnosing autism spectrum disorders (CongressGov, 2014). Since the H.R. 3054 is designed to provide education and training to healthcare professionals in developing countries, it allows for professionals to share information on how to best utilize the intervention and prevention treatment plans, and create a team to address the growing autism spectrum prevalence rates (CongressGov, 2014).

The growing prevalence rate of autism is a big concern leaving many families to worry and doubt as to when and how to treat the disorder. The importance of the H.R. 3054 helps to provide many developing countries techniques, education, and training to help combat autism. The medical clinics in the developing countries would be better equipped to detect and diagnose autism spectrum disorders at an early age. With training and education for professionals who specialize in autism spectrum disorders in the developing countries, families will be able to receive intervention and prevention plans for their children.

 

Albert Yi, BA, has worked in the field of autism for six years and is currently a graduate student at the University of Southern California. For more information, please email albertyi@usc.edu.

References

Autism Speaks (2012). New research finds annual costs of autism has more than tripled to $126 billion in the U.S. and reached 34 billion in the U.K. Family Services. Retrieved from http://www.autismspeaks.org/about-us/press-releases/annual-cost-of-autism-triples

Autism Society of America (2014). Autism through the lifespan. Living with Autism. Retrieved from http://www.autism-society.org/living-with-autism/autism-through-the-lifespan/

Centers for Disease Control and Prevention (2014). Data & statistics. Autism Spectrum Disorder. Retrieved from http://www.cdc.gov/ncbddd/autism/data.html

Centers for Disease Control and Prevention (2014). Facts about ASD. Autism Spectrum Disorder. Retrieved from http://www.cdc.gov/ncbddd/autism/facts.html 113th Congress (2014). H.R. 3054 Text. Retrieved from http://beta.congress.gov/bill/113th-congress/house-bill/3054/text

Datz, T. (2006, April 25). Autism has high costs to U.S. Society. Press Releases. Retrieved from http://archive.sph.harvard.edu/press-releases/2006-releases/press04252006.html

Diament, M. (2012, March 30). Autism costs soar to $137 billion. Disability Scoop. Retrieved from http://www.disabilityscoop.com/2012/03/30/autism-costs-billion/15286/

Dickler, J. (2012, April 2). The financial toll of autism. CNN Money. Retrieved from http://money.cnn.com/2012/04/02/pf/autism/

Global Autism Assistance Act of 2013. H.R. 3054. Retrieved from https://www.govtrack.us/congress/bills/113/hr3054#

Maguire, C. (2013, April 16). Autism on the rise: A global perspective. Harvard College Global Health Review. Retrieved from http://www.hcs.harvard.edu/hghr/online/autism-on-the-rise-a-global-perspective/

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