A Statewide Needs Assessment Survey for School-Age Children with Autism Spectrum Disorder
Autism Spectrum Disorder (ASD) is a multisystem disorder leading to primary impairments in social communication development as well as comorbidities in perceptuo-motor, cognitive, and behavioral skills (American Psychiatric Association, 2013; Bhat, Landa, & Galloway, 2011). In recent years there has been an increase in prevalence of ASD, with 1 in every 68 children in the US being diagnosed with ASD (Centers for Disease Control and Prevention, 2014). Given this increasing prevalence, there is a pressing need to understand the specific health care needs of children with ASD and their families as well as the challenges and barriers they face in accessing health care services.
In 2011, the Center for Disabilities Studies (CDS) at the University of Delaware conducted a statewide comprehensive needs assessment survey for caregivers of school-age children with ASD. The survey was meant to guide the formulation of a strategic plan to improve services for children with ASD and their families.
277 caregivers of school-age children with ASD completed the needs assessment survey in online or paper form. The survey obtained information about areas related to the diagnosis, educational status, living status, service needs, and community participation of school-age children with ASD.
Over half of this sample had a diagnosis of ASD and another quarter had a diagnosis of Asperger Disorder. In addition, over 80% of this sample had additional diagnoses, most commonly, developmental delay, attention deficit hyperactivity disorder, learning disability, anxiety, obsessive compulsive disorder, and intellectual delay. In terms of living status, around 95% of children lived with their parents or relatives. In terms of educational status, around 90% children had an individualized education plan (IEP) and around 65% caregivers were satisfied with their child’s IEP. The survey suggested that around 90% children were independent in feeding themselves and around 60% were independent in dressing themselves, requesting things, and indicating their needs to caregivers. In terms of health care services, caregivers indicated the need for more speech therapy, physical/occupational therapy, social skills training, and behavioral interventions over and above what the children were currently receiving. The survey also revealed that the various barriers faced by families of children with ASD in terms of accessing health care services included cost of services, shortage of service providers, as well as transportation and scheduling issues.
Results of the survey highlighted the main issues faced by children with ASD and their families. Caregiver responses to the survey indicated a dire need for specific medical and rehabilitation services for school-age children with ASD.