Financial Burden of Family for the Children with Autism Spectrum Disorder
Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 33122
Financial Burden of Family for the Children with Autism Spectrum Disorder

Authors: M. R. Bhuiyan, S. M. M. Hossain, M. Z. Islam

Abstract:

Autism Spectrum Disorder (ASD) is the fastest growing serious developmental disorder characterized by social deficits, communicative difficulties, and repetitive behaviors. ASD is an emerging public health issue globally which is associated with huge financial burden to the family, community and the nation. The aim of this study was to assess the financial burden of family for the children with Autism spectrum Disorder. This cross-sectional study was carried out from July 2015 to June 2016 among 154 children with ASD to assess the financial burden of family. Data were collected by face-to-face interview with semi-structured questionnaire following systematic random sampling technique. Majority (73.4%) children were male and mean (±SD) age was 6.66 ± 2.97 years. Most (88.8%) of the children were from urban areas with average monthly family income Tk. 41785.71±23936.45. Average monthly direct cost of the children was Tk.17656.49 ± 9984.35, while indirect cost was Tk. 13462.90 ± 9713.54 and total treatment cost was Tk. 23076.62 ± 15341.09. Special education cost (Tk. 4871.00), cost of therapy (Tk. 4124.07) and travel cost (Tk. 3988.31) were the major types of direct cost, while loss of income (Tk.14570.18) was the chief indirect cost incurred by the families. The study found that majority (59.8%) of the children attended special schools were incurred Tk.20001-78700 as total treatment cost, which were statistically significant (p<0.001). Again, families with higher monthly family income incurred higher treatment cost (r=0.526, p<0.05). Difference between mean direct and indirect cost was found significant (t=4.190, df=61, p<0.001). According to the analysis of variance, mean difference of father’s educational status among direct cost (F=10.337, p<0.001) and total treatment cost (F=7.841, p<0.001), which were statistically significant. The study revealed that maximum children with ASD were under five years, three-fourth were male. According to monthly family income, maximum family were in middle class. The study recommends cost effective interventions and financial safety-net measures to reduce the financial burden of families for the children with ASD.

Keywords: Autism spectrum disorder, financial burden, direct cost, indirect cost, Special education.

Digital Object Identifier (DOI): doi.org/10.5281/zenodo.1474721

Procedia APA BibTeX Chicago EndNote Harvard JSON MLA RIS XML ISO 690 PDF Downloads 1241

References:


[1] American Psychiatric Association (APA). Autism Spectrum Disorder. In: Diagnostic and Statistical Manual of Mental Disorders. Fifth Edition. American Psychiatric Publishing. Vol. 299.00, No. F84.0, 2013.
[2] Barbaresi, WJ., Katusic, SK., Voigt, RG. (2006). Autism: a review of the state of the science for pediatric primary health care clinicians. Archive Pediatric Adolescent Medicine. Vol.160, No.11, pp.1167-75, 2006. Available at: http://archpedi.jamanetwork.com/ article. aspx?articleid=205781.
[3] Goldani AA, Downs SR, Widjaja F, Lawton B, Hendren RL. "Biomarkers in autism". Front Psychiatry 5:100. doi:10.3389/fpsyt.2014.00100. PMC 4129499.PMID25161627, 2014.
[4] MacFarlane, JR., and Kanaya, T. What does it mean to be autistic? Inter-state variation in special education criteria for autism services. Journal of Child and Family Studies. Vol. 18, No. 6, pp. 662-669, 2009. doi:10.1007/s10826-009-9268-8.
[5] Naqvi, N. Prevalence and services outside of Europe and North America. Available at: http://www.hunter.cuny.edu/school-of-education/special-programs-and centers/ regional-autismcenter/repository/files/NNaquviprevalenceoutsideUS.pdf/view, 2009.
[6] Sharpe, DL., and Baker, DL. The Financial Side of Autism: Private and Public Costs. A Comprehensive Book on Autism Spectrum Disorders. Dr. Mohammad-Reza Mohammadi (Ed.), ISBN: 978-953-307-494-8. InTech, 2011. Available at: http://www. intechopen.com/books/a-comprehensive-book-on-autismspectrum-disorders/
[7] Momen, A. Opening Remarks on: ‘Solving the Autism Public Health Puzzle: Regional and International Collaboration’ on April 6, 2011, New York. Available at: http://www.un.int/bangladesh/sites/www.un.int/files/Bangladesh/GA68/opening_remarks_on_autism.pdf. Accessed on: 25 May 2015.
[8] Centers for Disease Control and Prevention (CDC). Community Report on Autism: From the Autism and Developmental Disabilities Monitoring Network. National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention MS-86, 1600 Clifton Road Atlanta, GA 30333, 2014. Available at: http://www.cdc.gov/ncbddd/autism/states/comm_ report autism _2014.pdf.
[9] Meadan, H., Halle, JW., and Ebata, AT. Families with children who have autism spectrum disorders: Stress and support. Exceptional Children. Vol. 77, No. 1, pp. 7-36, 2010. Available at: http://www. freepatentsonline.com/article/Exceptional-Children/ 236990582. Html.
[10] Kim, YS., Leventhal, BL., Koh, YJ., Fombonne, E., Laska, E., Lim, EC., Cheon, KA., Kim, SJ., Kim, YK., Lee, H., Song, DH., Grinker, RR. Prevalence of autism spectrum disorders in a total population sample. Am J Psychiatry. Vol. 168, No. 9, pp. 904-912, 2011. doi: 10.1176/appi .ajp.2011. 10101532.
[11] The Times of India. Autism is not a disease, 2013. Available at: http://timesofindia. indiatimes.com/city/ahmedabad/Autism-is-not-a- disease/articleshow/ 19333810.cms. Accessed on: 23 July 2015.
[12] Zerin, SA. Fostering inclusive education. The Daily Star, 2015. Available at: http://www.thedailystar.net/fostering-inclusive-education-23813.
[13] Amr, M., Ali, WAB., Hablas, H., Rhaddad, D., Mehesh, FE., Gilany, AHE., Shamy, HA. Sociodemographic factors in Arab children with Autism Spectrum Disorders. The Pan African Medical Journal. Vol. 13, pp. 65, 2012. Link: http://www.panafrican-med-journal.com/content/article/13/65/full.
[14] Sun, X., Allison, C., Auyeung, B., Fiona, E., Matthews, FE., Baron-Cohen, S., Brayne, C. Service provision for autism in mainland China: Preliminary mapping of service pathways. Social Science & Medicine. Vol. 98, pp. 87-94, 2013. Journal homepage: www. elsevier.com/locate/socscimed.
[15] Bangladesh Bureau of Statistics. Statistical year book 2015. Statistics and Information Division. Ministry of planning. Government of the people’s republic of Bangladesh. 2016.
[16] Hasnain, MG., Akter, M. The Relation of Socio-economic Factors with Autism among Children: A Study in an Urban Area of Bangladesh. J PIONEER MED SCI. Vol. 4, No. 1, pp. 12, 2014. Available at: www.jpmsonline.com.
[17] Konrad, W. Dealing With the Financial Burden of Autism: A Road Map to Help Parents Deal With the Financial Burden of Autism. The New York Times, 2010. Available at: http://nytimes. com /2010/01/23/health/23patient.html?referer=.
[18] Tarbox, J., Dixon, DR., Sturmey, P., Matson, JL. Handbook of Early Intervention for Autism Spectrum Disorders: Research, Policy, and Practice. Edn. Illustrated. Publisher. Springer Science & Business Media. Pp. 165-168, 2014. Available at: https://books.google. com.bd/books? id=iFlFAwAAQ BAJ&source=gbs_navlinks_s.
[19] Järbrink, K., Fombonne, E., and Knapp, M. Measuring the parental, service and cost impacts of children with autistic spectrum disorder: a pilot study. Journal of Autism and Developmental Disorders. Vol. 3, No. 4, pp. 395-402, 2003. DOI:10.1023/A:1025058711 465.Source: PubMed. Available at: https://www.researchgate. net/publication/10580310
[20] Wang, J., Zhou, X., Xia, W., Sun, CH., Wu, LJ., Wang, JL., and Tomoda, A. Parent-reported health care expenditures associated with autism spectrum disorders in Heilongjiang province, China. BMC Health Services Research. Vol.12, No.7, 2012. doi:10.1186/1472-6963-12-7. Available at: http://www. biomed central .com/1472-6963/ 12/7.
[21] Sun, X., Allison, C., Auyeung, B., Fiona, E., Matthews, FE., Baron-Cohen, S., Brayne, C. Service provision for autism in mainland China: Preliminary mapping of service pathways. Social Science & Medicine. Vol. 98, pp. 87-94, 2013. Journal homepage: www. elsevier.com/locate/socscimed.
[22] Horlin, C., Falkmer, M., Parsons, R., Albrecht, MA., Falkmer, T. The Cost of Autism Spectrum Disorders. PLoS ONE. Vol. 9, No. 9, pp.106552, 2014. doi:10.1371/journal.pone.0106552.
[23] Mandell, DS. Understanding and Addressing the Impact of Autism on the Family. Leonard Davis Institute of Health Economics. Vol. 17, No. 7, 2012. Available at: http:// ldi. upenn.edu.
[24] Ou, JJ., Shi, LJ., Xun, GL., Chen, C., Wu, RR., Luo, XR., Zhang, FY. (2015). Employment and financial burden of families with preschool children diagnosed with autism spectrum disorders in urban China: Results from a descriptive study. BMC Psychiatry. Vol.15, No.3, 2015. DOI 10.1186/s12888-015-0382-4.
[25] Synergies. Economic Costs of Autism Spectrum Disorder in Australia. Synergies Economic Consulting Pty Ltd, 2011. Available at: www.synergies.com.au.