Differences in Perceived Need for Medical, Therapeutic, and Family Support Services Among Children With ASD

Abstract

OBJECTIVE: Identifying racial and ethnic differences in perceived need for treatment among families of children with autism spectrum disorder (ASD) will improve understanding of disparities in care seeking. We described racial and ethnic differences in perceived need for services that children with ASD and their families frequently use. METHODS:We conducted bivariate analyses of racial and ethnic categories and perceived need for 6 common services used by children with ASD as found in the 2005 to 2006 (n = 2123) and the 2009 to 2010 (n = 3055) National Survey of Children With Special Health Care Needs data sets. Multivariate logistic regressions within concatenated data sets were conducted to examine associations between racial and ethnic category and perceived service needs while controlling for predisposing, enabling, and child factors. RESULTS:Compared with caregivers of white non-Hispanic children with ASD, caregivers of Hispanic children reported less need for prescription medications in adjusted multivariate analyses. Caregivers of black non-Hispanic children with ASD reported less need for prescription medications and for child and family mental health services than caregivers of white non-Hispanic children. Both English-speaking Hispanic caregivers and black nonHispanic caregivers reported greater need for occupational, speech, and physical therapy than white non-Hispanic caregivers. No racial or ethnic differences were found in perceived need for specialty medical care or respite care. CONCLUSIONS:Caregivers of children with ASD from different racial and ethnic backgrounds may differentially perceive need for different types of care. Their perceptions may in turn affect how they prioritize and seek care, independent of their child's specific needs. Dr Benevides conceptualized and designed the study, analyzed the data, and drafted the initial manuscript; Dr Carretta contributed to the study design, data management, data analysis, and interpretation of the fi ndings and critically reviewed and revised the manuscript; Dr Mandell contributed to the study design and interpretation of the fi ndings and critically reviewed and revised the manuscript; and all authors approved the fi nal manuscript as submitted. [2][3][4] However, caregivers of children with ASD have reported that obtaining appropriate and timely care is often difficult and costly, 5 and many are dissatisfied with the process of obtaining care. 6,7 Caregivers of children with ASD report more unmet needs for a variety of services than caregivers of children with other emotional, developmental, or behavioral difficulties. 8,9 Caregivers of children with ASD who are from racial or ethnic minority groups experience even greater difficulty than nonminority caregivers obtaining care. [10][11][12][13][14] Authors of these studies finding racial or ethnic differences in type and quality of care suggest that these differences may not result solely from health care system or provider factors (eg, availability of providers, sensitivity of provide...

The effect of Medicaid waivers on ameliorating racial/ethnic disparities among children with autism

“…Interestingly, the parents of black children with ASD in our sample, who had a much higher rate of using Medicaid as their primary insurance, reported less unmet need than did the parents of white children with ASD. This is consistent with studies suggesting that parents of black children with ASD may perceive less need for medical care than white parents, despite their objective need being similar . Perception of need may be affected by stigma in the black community regarding diagnosis and treatment for mental health conditions, and a lack of awareness of the benefit of different types of treatment .…”

“…Several study limitations should be noted. The diagnosis of ASD and unmet need was self‐reported by the parents of the children included in this study, and as previously noted, perceived need for care varies systematically by race/ethnicity . Additionally, this study relied on review of waiver applications approved by CMS.…”

“…This is consistent with studies suggesting that parents of black children with ASD may perceive less need for medical care than white parents, despite their objective need being similar. 31 Perception of need may be affected by stigma in the black community regarding diagnosis and treatment for mental health conditions, and a lack of awareness of the benefit of different types of treatment. 32 The perception of need also may be affected by provider behavior.…”

“…The diagnosis of ASD and unmet need was self-reported by the parents of the children included in this study, and as previously noted, perceived need for care varies systematically by race/ethnicity. 31 Additionally, this study relied on review of waiver applications approved by CMS. Due to budget constraints or other limitations, a state may not implement an approved waiver or may not implement the waiver to the extent indicated on the CMS application.…”

Therapy access among children with autism spectrum disorder, cerebral palsy, and attention‐deficit–hyperactivity disorder: a population‐based study

“…Among studies investigating therapy access, this positive finding is similar to another population‐based survey analysis but is dissimilar to smaller, non‐population‐based studies reporting racial or ethnic disparities in therapy service access . Our previous work demonstrated caregivers of minority groups may perceive need for services differently, thus affecting the sample from which unmet need is evaluated . Thus, the way unmet need is ascertained may contribute to differences between studies.…”