Running head: HEALTH CARE DISPARITIES AND HEALTH CARE POLICY

Health Care Disparities and Healthcare Policy Affecting the Child Diagnosed with Autism Spectrum Disorder Joella M. Show Ferris State University

HEALTH CARE DISPARITIES AND HEALTH CARE POLICY Abstract The purpose of this paper is to review health care disparities that affect children who are diagnosed with autism spectrum disorder (ASD). These children are at risk for health care disparities related to not having a primary care provider coordinating all of their care and ensuring that they receive adequate treatment for the symptoms of ASD. The social determinants of ASD relate to the symptoms which effect a childs social interactions and their communication with the people in their environment. Not all children with ASD receive adequate services even though there are policies written to protect these children. In the conclusion of the paper I discuss the values and beliefs about ASD that may be a possible cause for the health care disparities that occur. Keywords: health care disparities, social determinants, autism spectrum disorder, ASD

HEALTH CARE DISPARITIES AND HEALTH CARE POLICY Health Care Disparities and Healthcare Policy Affecting the Child Diagnosed with Autism Spectrum Disorder Children who have been diagnosed with Autism Spectrum Disorder (ASD) experience health care disparities. These children typically need medications, therapies and other medical services that are beyond their parents financial ability. Disparities in unmet needs for children with autism suggest that organizational features of managed care programs and provider characteristics pose barriers to accessing care (Chiri & Warfield, 2011). Doctors and teachers do not always provide parents of developmentally delayed children with needed referrals for an IEP. The therapies required for a child diagnosed with autism can be very costly if a parent has to pay for private therapy. Disparities in the prevalence and parent-reported severity of autism and in access to health care were found for children with autism (Liptak, Benzoni, Mruzek, Nolan, Thingvoll, Wade, & Fryer, 2008). There are various forms of health care disparities related to individuals diagnosed with ASD, but the majority of the health care disparities are related to access to proper therapy. Appropriate services can improve the behavioral and cognitive functioning for children with autism spectrum disorders (ASD) (Harstad, Huntington, Bacic, & Barbaresi, 2013). By preventing the health care disparities associated with ASD these individuals, their friends, and their families will have an opportunity for a higher quality of life. Population and Health Care Disparity Defined Children with autism spectrum disorders (autistic disorder, pervasive developmental disorder not otherwise specified, and Asperger disorder) have significant impairments in social

interactions and communication, as well as restrictive, repetitive patterns of behaviors, thoughts, or interests (Harstad, Huntington, Bacic, & Barbaresi, 2013, p. 334). Parents of children with

HEALTH CARE DISPARITIES AND HEALTH CARE POLICY autism often struggle to provide all the services their children need. In most circumstances children diagnosed with autism require more medical services, rehabilitation therapies, mental health and school-based services than other children with special health care needs (Farmer, Clark, Mayfield, Cheak-Zamora, Marvin, Law, & Law, 2013). A primary care provider is a necessary and essential part of a child with ASDs health care needs. The number of children diagnosed with autism has been growing. The Center for

Disease Control (CDC)s most recent data show that between one in 80 and one in 240 children with an average of one in 110 have an ASD (CDC, 2012). Early diagnosis and treatment of ASD is a significant determinant of long term outcomes for these children (CDC, 2012). One health care disparity relates to lack of diagnosis and treatment for children with ASD. Although children with autism spectrum disorders (ASDs) are eligible to receive special education services via an individualized education program (IEP), approximately 12% to 20% do not (Harstad, Huntington, Bacic, & Barbaresi, 2013). Private speech, occupational, and physical therapy are expensive and often not affordable for parents of children with ASD. For children with ASD in the United States, socioeconomic factors, not disability severity, are associated with IEP receipt (Harstad, Huntington, Bacic, & Barbaresi, 2013). Review of Social Determinants The social determinants of health are the circumstances in which people are born, grow up, live, work, and age, as well as the systems put in place to deal with illness (CDC, 2013). Autism spectrum disorder is a group of developmental disabilities causing major social, communication and behavioral challenges (CDC, 2012). The symptoms of ASD are noticed early in a childs life (CDC, 2012). The symptoms of ASD have effects on the childs social interactions for the rest of the childs life (CDC, 2012).

HEALTH CARE DISPARITIES AND HEALTH CARE POLICY Policies Contributing to Disparities In the United States every child has the right to free and appropriate education (Harstad, Huntington, Bacic, & Barbaresi, 2013). Children with certain diagnoses such as ASD may have a written individualized education plan (IEP) (Harstad, Huntington, Bacic, & Barbaresi, 2013). Children with ASD have significant impairments in their social skills, communication, and behaviors that negatively impact their functioning and are likely to impact their ability to make effective progress at school without specialized services (Harstad, Huntington, Bacic, & Barbaresi, 2013). Statistics show that 12% to 20% of children who have been diagnosed with ASD are unable to receive the services they need (Harstad, Huntington, Bacic, & Barbaresi,

2013). Parents state that 18.9% of children with ASD do not have a primary care physician who is coordinating the care for all of their childs needs (Farmer, Clark, Mayfield, Cheak-Zamora, Marvin, Law, & Law, 2013). Enhancements in the delivery of primary care for children with ASD may make a real difference in access to needed specialty care services, potentially improving child and family outcomes (Farmer, Clark, Mayfield, Cheak-Zamora, Marvin, Law, & Law, 2013). Contributing Factors to Disparities Children with autism are often considered rude and inappropriate because of their lack of understanding of social norms. This misunderstanding of these children causes an increase in the unfair treatment they receive. Even though children with autism spectrum disorders need more health care services, they have less access to specialized care than children with other conditions, such as asthma or diabetes (Dallas, 2012). The therapies that help a child with autism survive in their social environment may be considered unnecessary by some health care professionals and governmental officials. Autism is sometimes not considered a real diagnosis, but just an

HEALTH CARE DISPARITIES AND HEALTH CARE POLICY excuse for poor behavior. These false health beliefs may be a contributing factor that leads to health care disparities that are experienced by children who have been diagnosed with autism.

HEALTH CARE DISPARITIES AND HEALTH CARE POLICY References Center for Disease Control and Prevention (CDC). (2012). National center on birth defects and developmental disabilities. Retrieved from http://www.cdc.gov/ncbddd/features/counting-autism.html Center for Disease Control and Prevention (CDC). (2013). Social determinants of health. Retrieved from http://www.cdc.gov/socialdeterminants/

Chiri, G., & Warfield M., (2011). Unmet need and problems accessing core health care services for children with Autism Spectrum Disorder. Maternal and Child Health Journal. doi:10.1007/s10995-011-0833-6 Dallas, M. (2012). Kids with autism face health care disparities, study finds. Retrieved from http://www.medicinenet.com/script/main/art.asp?articlekey=159379 Farmer, J., Clark, M., Mayfield, W., Cheak-Zamora, N., Marvin, A., Law, J., & Law, P. (2013). The relationship between the medical home and unmet needs for children with autism spectrum disorders. Maternal and Child Health Journal. doi: 10.1007/s10995-013-1292z Harstad, E., Huntington, N., Bacic, J., & Barbaresi, W. (2013). Disparity of care for children with parent-reported autism spectrum disorders. Academic Pediatrics 13(4). doi: 10.1016/j.acap.2013.03.010 Liptak, G., Benzoni, L., Mruzek, D., Nolan, K., Thingvoll, M., Wade, C., & Fryer, G. (2008). Disparities in diagnosis and access to health services for children with autism: data from the National Survey of Children's Health. J Dev Behav Pediatr, 29(3). doi: 10.1097/DBP.0b013e318165c7a0