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Caregivers of Children with Autism Face Significant Challenges

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Caregivers of children with autism spectrum disorder (ASD) face a number of significant challenges. They include: (1) the complexity of the disorder itself, which requires early and intensive behavioral interventions requiring coordination among multiple educational and health-care providers; (2) extensive developmental and physical comorbidities that need greater medical management and attention by the caregiver as well as the health-care providers; and (3) lack of “gold standard” or evidence base for wide array of pharmacological, biomedical, alternative treatment, and behavioral therapies used by caregivers of children with ASD. In addition, the substantial out-of-pocket direct health-care costs and other indirect costs incurred by families of children with ASD also pose a significant financial burden on these families.

A special issue article in the peer reviewed journal Autism examined issues with access to services, quality of care, and family impact reported by more than 18,000 caregivers of children with ASD as compared to caregivers of children with developmental disabilities, mental health conditions, or both. The 2009–2010 National Survey of Children with Special Health Care Needs was utilized to analyze the association between child’s special needs condition and three outcomes: (1) access to services (difficulty using services, difficulty getting referrals, lack of source of care and inadequate insurance coverage); (2) quality of care (lack of care coordination, lack of shared decision making, and no routine screening); and (3) family impact (financial, employment, and time-related burden). Statistical analyses were performed to compare caregivers of children with autism spectrum disorders to caregivers of children with developmental disabilities (cerebral palsy, Down syndrome, developmental delay, or intellectual disability), mental health conditions (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression), or both developmental disabilities and mental health conditions.

Results

The results indicated that caregivers of children with ASD were significantly more likely to report difficulty using services, lack of source of care, inadequate insurance coverage, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both.

Specifically, more caregivers of children with ASD reported difficulty using services (55.0%) than car­egivers of children with developmental disabilities (43.7%) and mental health conditions (36.4%). One-third (33.4%) of caregivers of children with ASD reported insurance coverage as inadequate, as compared to 23.8% of those in the other two groups.

A greater proportion of caregivers of chil­dren with ASD also reported lack of shared decision making (43.1%), as compared to caregivers of other children. Similarly, a significantly greater pro­portion of caregivers of children with ASD reported lack of coordination (86.7%) as compared to all other groups.

Lastly, family impact and financial burden was observed in greater proportion of caregivers of children with ASD (53.2%) than caregivers of other special needs children. Employment burden was also observed in greater proportion of caregivers of children with ASD (38.4%), as compared to other caregivers. Likewise, time-related burden was observed in a greater proportion of caregivers of children with ASD (24.1%) as compared to caregivers of those children with developmental disabilities and mental health conditions.

Discussion

This study set out to examine the association between special needs conditions and caregiver-reported issues with respect to access to services, quality of care, and impact of the condition on the family. After adjusting for demographic characteristics, socioeconomic status, number of special needs children in the household, child’s functional ability, and presence of a physical comorbidity, overall, caregivers of children with ASD were more likely to report issues with access to services and quality of care as compared to caregivers of children with developmental disabilities, mental health conditions, or both. Caregivers of children with ASD were also more likely to report financial, employment, and time-related burden as compared to the other three special needs condition groups. This study supports prior research which showed that caregivers of children with developmental disabilities and specifically ASD are more likely to report inability of pediatricians and other primary care providers to understand their concerns, to provide information about their child’s condition, and to put parents in touch with other parents of children with similar conditions.

Conclusion

Based on the study’s results, one can conclude that caregivers of children with ASD face significant barriers in access to services and face adverse family impact. In addition, children with ASD also receive poor quality of care compared to caregivers of other special needs conditions. The authors comment that the findings highlight that children with ASD form a “vulnerable population” that may require greater provider and caregiver attention as compared to children with other developmental disabilities and mental health needs. They also conclude that caregivers of children with ASD may require services and care that extend beyond that provided by the current health-care system and that public policies and state-level programs are needed to reduce the deficits in health-care services for children with ASD.

Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions Rini Vohra, Suresh Madhavan, Usha Sambamoorthi and Claire St Peter Autism published online 18 December 2013 DOI: 10.1177/

The online version of this article can be found at: http://aut.sagepub.com/content/early/2013/12/18/1362361313512902

Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. He is also editor of a new Volume in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools.

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