The Relationship Between the Medical Home and Unmet Needs for Children with Autism Spectrum Disorders

Abstract

The purpose of this study was to examine the relationship between having access to a medical home and unmet needs for specialty care services for children with autism spectrum disorders (ASD). Parents of children enrolled in a national autism registry were invited to complete an online Access to Care Questionnaire. The resulting sample consisted of 371 parents-child dyads. Bivariate and hierarchical regression analyses were conducted to determine whether having a medical home was associated with the number of unmet needs for specialty care. Less than one in five children with ASD had a medical home (18.9%). Nearly all parents reported that their child had a personal doctor or nurse as well as a usual source of care, but less than one-third received coordinated care (29.9%) and less than one-half received family-centered care (47.1%). Many children had unmet needs (63%), and the highest unmet need was for behavioral therapy. Having a medical home was associated with fewer unmet specialty care needs, even after demographic, child and family characteristics were taken into account. Children with ASD who have a medical home are more likely to have adequate access to needed services. Unfortunately, relatively few children have a medical home that includes family-centered and coordinated care. 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.

Service Delivery Experiences and Intervention Needs of Military Families with Children with ASD

“…These findings are corroborated by previous research with families of children with ASD. Farmer et al (2014) indicated 98.9 % of parents in their study reported at least one service need (M = 1.66; range = 0-7). Some of the common needs were similar as well.…”

“…Farmer et al (2014) found 98.9 % of parents of children with ASD reported at least one service need. Further, 63 % reported at least one specialty care need (e.g., speech therapy; Farmer et al 2014).…”

“…Farmer et al (2014) found 98.9 % of parents of children with ASD reported at least one service need. Further, 63 % reported at least one specialty care need (e.g., speech therapy; Farmer et al 2014). The most common service needs for children with ASD reported by parents were behavioral therapy (65 %), communication aids/devices (52.4 %), occupational/physical therapy (46.1 %), and speech therapy (41.5 %; Farmer et al 2014).…”

“…Further, 63 % reported at least one specialty care need (e.g., speech therapy; Farmer et al 2014). The most common service needs for children with ASD reported by parents were behavioral therapy (65 %), communication aids/devices (52.4 %), occupational/physical therapy (46.1 %), and speech therapy (41.5 %; Farmer et al 2014). Sixty-four percent of parents also reported at least one family need related to genetic counseling (70.5 %), respite care (70.1 %) and/or family mental health (63 %; Farmer et al 2014).…”

“…The most common service needs for children with ASD reported by parents were behavioral therapy (65 %), communication aids/devices (52.4 %), occupational/physical therapy (46.1 %), and speech therapy (41.5 %; Farmer et al 2014). Sixty-four percent of parents also reported at least one family need related to genetic counseling (70.5 %), respite care (70.1 %) and/or family mental health (63 %; Farmer et al 2014). Murphy and Ruble (2012) asked parents of children with ASD (who lived in metropolitan and non-metropolitan areas) to prioritize a list of services based on need.…”