Financial and other Costs to Families of Children with Autism

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  Here you will find a few articles outlining the other costs of raising a child with ASD's.  New data is being gathered about this because of the increased prevalence of ASD's in society.  When calculating the cost to a family different researchers use different factors so their outcomes will vary but everyone agrees that it takes more than monetary resources to raise a child with ASD.

 
 


 
 
 
 
Kogan MD, Strickland BB, Blumberg SJ, Singh GK, Perrin JM, van Dyck PCBaker, DL. A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. Pediatrics. 2008 Dec;122(6):e1149-58.

OBJECTIVES: We sought to examine the health care experiences of children with autism spectrum disorder and the impact of autism spectrum disorder on the family and to assess whether having a medical home is associated with less family impact.  CONCLUSIONS: Barriers to health care can be insurmountable for low-income families, even those with insurance coverage. Patients who do not seek care in a family medicine clinic are not necessarily getting their care elsewhere.

 

Sharpe DL, Baker, DL. Financial Issues Associated with Having a Child
with Autism. J Fam Econ Iss (2007) 28:247–264.
Data from the Family Experiences with Autism Survey are used to identify factors associated with financial problems in families that have a child with autism. Likelihood of financial problems was positively associated with use of medical interventions, having unreimbursed medical or therapy expenses, and having relatively lower income. Use of speech and language therapy was negatively associated with likelihood of financial problems. Many survey respondents forfeited future financial security and even experienced bankruptcy to provide needed therapy for a child with autism. Specific ways that financial advisors can help families that have a child with autism are outlined.
 
 
 
Leiter V, Wyngaarden Krauss M, Anderson B, Wells N. Effects of Mothering a Child with Special Needs. The Consequences of Caring. Journal of Family Issues, Vol. 25, No. 3, 379-403 (2004)
This article broadens our knowledge about family caregiving across the life course by examining caregiving and employment effects experienced by women with children with special needs, using data from a survey conducted in 1998-1999. Almost one fifth of the mothers provide at least 20 hours a week of home health care to these children. More than half of the mothers in the labor force report an employment effect in the form of reducing their hours, and more than half of the mothers at home full-time report ceasing paid employment due to their children’s needs. Experiencing these effects was most strongly associated with the child’s health characteristics. The caregiving provided by mothers of children with special needs occurs at a formative stage of their lives and may be intense and of long duration. These mothers’ experiences should be included in the current research and theories about family caregiving across the life course.
 
 
Montes G, Halterman JS. Association of Childhood Autism Spectrum Disorders and Loss of Family Income PEDIATRICS Vol. 121 No. 4 April 2008, pp. e821-e826 (doi:10.1542/peds.2007-1594)
BACKGROUND. Parents of children with autism have significant out-of-pocket expenditures related to their child's care. The impact of having a child with autism on household income is not known.
OBJECTIVE. The purpose of this work was to estimate the loss of household income associated with childhood autism using a nationally representative sample.
METHODS. Parents of 11684 children enrolled in kindergarten to eighth grade were surveyed by the National Household Education Survey-After School Programs and Activities in 2005. An autism spectrum disorder was defined as an affirmative response to the questions, "has a health professional told you that [child] has any of the following disabilities? 1) autism? 2) pervasive developmental disorder or PDD?" There were 131 children with autism spectrum disorder in the sample and 2775 children with other disabilities. We used ordinal logistic regression analyses to estimate the expected income of families of children with autism given their education level and demographic characteristics and compared the expected income with their reported income.
RESULTS. Both having a child with autism spectrum disorder and having a child with other disabilities were associated with decreased odds of living in a higher income household after controlling for parental education, type of family, parental age, location of the household, and minority ethnicity. The average loss of annual income associated with having a child with autism spectrum disorder was $6200 or 14% of their reported income.
CONCLUSION. Childhood autism is associated with a substantial loss of annual household income. This likely places a significant burden on families in the face of additional out-of-pocket expenditures.
 
 
 
Montes G, Halterman JS. Child care problems and employment among families with preschool-aged children with autism in the United States. Pediatrics. 2008 Jul;122(1):e202-8
BACKGROUND: The impact of childhood autism on parental employment is largely unknown. OBJECTIVE: The purpose of this work was to describe the child care arrangements of children with autism and to determine whether families of preschool-aged children with autism are more likely to report that child care arrangements affected employment compared with typically developing children and children at high risk for developmental problems. METHODS. Parents of 16282 preschool-aged children were surveyed by the National Survey of Children's Health. An autism spectrum disorder was defined as an affirmative response to the question, "Has a doctor or health professional ever told you that [child] has any of the following conditions? Autism?" There were 82 children with autism spectrum disorder in the sample, and 1955 children at high risk on the basis of the Parent's Evaluation of Developmental Status. We used chi(2) and multivariate logistic regression analyses. RESULTS: Ninety-seven percent of preschool-aged children diagnosed with autism spectrum disorder were cared for in community settings, particularly preschool and Head Start, with only 3% in exclusive parental care. Thirty-nine percent of the parents of children with autism spectrum disorder reported that child care problems had greatly affected their employment decisions, compared with 16% of the children at high risk and 9% of those who were typically developing. In multivariate analyses, families with a child with autism spectrum disorder were 7 times more likely to state that child care problems affected employment than other families, after controlling for household and child covariates. This effect was 3 times larger than the effect of poverty. CONCLUSIONS: Developmental problems and autism spectrum disorder are associated with higher use of child care services and higher probability that child care problems will greatly affect employment. These findings warrant evaluation of the community resources available to families with children with special needs.
 
 
 
Ganz ML. The lifetime distribution of the incremental societal costs of autism. Arch Pediatr Adolesc Med. 2007 Apr;161(4):343-9
OBJECTIVE: To describe the age-specific and lifetime incremental societal costs of autism in the United States. DESIGN: Estimates of use and costs of direct medical and nonmedical care were obtained from a literature review and database analysis. A human capital approach was used to estimate lost productivity. These costs were projected across the life span, and discounted incremental age-specific costs were computed. SETTING: United States. PARTICIPANTS: Hypothetical incident autism cohort born in 2000 and diagnosed in 2003. MAIN OUTCOME MEASURES: Discounted per capita incremental societal costs. RESULTS: The lifetime per capita incremental societal cost of autism is $3.2 million. Lost productivity and adult care are the largest components of costs. The distribution of costs over the life span varies by cost category. CONCLUSIONS: Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood. The substantial costs resulting from adult care and lost productivity of both individuals with autism and their parents have important implications for those aging members of the baby boom generation approaching retirement, including large financial burdens affecting not only those families but also potentially society in general. These results may imply that physicians and other care professionals should consider recommending that parents of children with autism seek financial counseling to help plan for the transition into adulthood.
 

Page Updated 9/17/2010 -- Yvette Fierce