title: Medicaid 1915(c) Home- and Community-Based Services waivers for children with autism spectrum disorder.
abstract: This research aims to describe the characteristics of 1915(c) Home- and Community-Based Services waivers for children with autism spectrum disorder across states and over time. While increasingly popular, little is known about these Medicaid waivers. Understanding the characteristics of these programs is important to clinicians and policymakers in designing programs to meet the needs of this vulnerable population and to set the stage for evaluating changes that occur with the implementation of health-care reform. Home- and Community-Based Services waiver applications that included children with autism spectrum disorder as a target population were collected from the Centers for Medicare and Medicaid Services website, state websites, and state administrators. A data extraction tool was used to document waiver inclusions and restrictions, estimated service provision and institutional costs, and the inclusion of four core autism spectrum disorder services: respite, caregiver support and training, personal care, and evidence-based treatments. Investigators identified 50 current or former waivers across 29 states that explicitly included children with autism spectrum disorder in their target populations. Waivers differed substantially across states in the type and breadth of autism spectrum disorder coverage provided. Specifically, waivers varied in the populations they targeted, estimated cost of services, cost control methods employed, and services offered to children with autism spectrum disorder. Home- and Community-Based Services waivers for children with autism spectrum disorder are very complex and are not consistent across states or over time. Further efforts are needed to examine the characteristics of programs that are associated with improved access to care and clinical outcomes to maximize the benefits to individuals with autism spectrum disorder and their families.
authors.affiliation: Penn State College of Medicine, USA dvelott@psu.edu.
authors.forename: Diana L
authors.initials: DL
authors.lastname: Velott
authors.affiliation: Penn State College of Medicine, USA.
authors.forename: Edeanya
authors.initials: E
authors.lastname: Agbese
authors.affiliation: Perelman School of Medicine at the University of Pennsylvania, USA.
authors.forename: David
authors.initials: D
authors.lastname: Mandell
authors.affiliation: RAND Corporation, USA University of Pittsburgh School of Medicine, USA.
authors.forename: Bradley D
authors.initials: BD
authors.lastname: Stein
authors.affiliation: RAND Corporation, USA.
authors.forename: Andrew W
authors.initials: AW
authors.lastname: Dick
authors.affiliation: RAND Corporation, USA.
authors.forename: Hao
authors.initials: H
authors.lastname: Yu
authors.affiliation: Penn State College of Medicine, USA.
authors.forename: Douglas L
authors.initials: DL
authors.lastname: Leslie
mesh_terms: D000293:Adolescent; D000067877:Autism Spectrum Disorder / Q000628:therapy*; D017028:Caregivers; D002648:Child; D002675:Child, Preschool; D003153:Community Health Services / Q000458:organization & administration*; D055317:Evidence-Based Practice; D006297:Health Services Accessibility; D006699:Home Care Services / Q000458:organization & administration*; D006801:Humans; D008484:Medicaid / Q000458:organization & administration*; D012144:Respite Care; D014481:United States
keywords: Medicaid; access to health care; autism spectrum disorders; children; waivers