Service Use and Unmet Needs Among Adults with Autism Awaiting Home- and Community-Based Medicaid Services

Abstract

Autistic adults in need of long-term services and supports spend months on waiting lists before receiving such services through Medicaid. Data from a state-wide survey of adults and their caregivers on a waiting list for autism waivers suggest that the majority have unmet needs for functional skills services (63.6%), employment or vocation services (62.1%), and mental and behavioral health services (52.8%). Almost a third require case management services (28.3%). Predictors of greater service need are African American race and the number of physical and behavioral health diagnoses. Predictors of greater service receipt were employment status, housing type, and school enrollment; there was lower service receipt for African American race, Hispanic ethnicity, over age 21 years, and college completion. Keywords Adults with autism • Medicaid • Waiting list • Unmet needsAutism spectrum disorder (ASD) is a life-long, neuro-developmental disorder shaping the lives of not just children, but hundreds of thousands of adults and their families in the United States (Jariwala-Parikh et al. 2019). While children diagnosed with ASD may be eligible for services through educational institutions and other public and private programs (Thomas et al. 2012;Turnbull et al. 2002), adults may find fewer supports available to support their functional capacity and wellbeing without access to supports provided in educational institutions. Vocational rehabilitation services and home-and community-based services (HCBS) may be available to many through state and federal programs (Lawer et al. 2009), but many adults with ASD may face barriers to accessing these services and have significant unmet service needs (Raymaker et al. 2017;Turcotte et al. 2016;Vogan et al. 2017).Less than 30 years ago, children and adults with ASD were often cared for in an institutional or segregated setting.

Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware

“…For the state of DE, this is the first survey‐based study to systematically document the needs of families of children and youth with ASD. The only other studies in the US that reported representative statewide data from needs assessment surveys in individuals with ASD included reports from Pennsylvania (Schott et al, 2020; Turcotte et al, 2016), Tennessee (Mello et al, 2016), Oregon (Dudley et al, 2019; Lindly et al, 2020; Martin et al, 2015), and Kentucky (Murphy & Ruble, 2012; Ruble & McGrew, 2007). Our results are in line with findings from some of these other statewide reports and will be discussed in detail in the sections below pertaining to our research questions and findings.…”

“…Based on data from a large state‐wide PA autism survey, Turcotte et al, (2016) found that with an increase in age, individuals with ASD reported lower service use and greater unmet need for services including SLT, social skills training, OT, medication management and one‐on‐one support (Turcotte et al, 2016). Similarly, adults with ASD require greater services in the areas of vocational or employment services, functional skill services, and mental and behavioral health services (Schott et al, 2020). Similarly, we also found that with a transition to adolescence and adulthood, caregivers identified unmet needs for age‐appropriate services including vocational training, transition planning, sexual health training, and relationship counseling.…”

“…The current study is based on a needs assessment survey conducted by the University of Delaware (UD)'s Center for Disabilities Studies (CDS) as part of a planning initiative aimed at conducting a comprehensive statewide appraisal of ongoing needs and service‐related challenges faced by individuals with ASD in Delaware (DE) across the lifespan, and developing a strategic plan to improve services for individuals with ASD with an emphasis on family participation. To the best of our knowledge, few studies have reported findings from statewide surveys designed to identify service needs in individuals with ASD and their families in the US (Mello et al, 2016; Murphy & Ruble, 2012; Ruble & McGrew, 2007; Schott et al, 2020; Turcotte et al, 2016). For example, Schott et al (2020) conducted a statewide survey in Pennsylvania (PA) on adults with ASD and their caregivers on the waiting list for the Medicaid‐funded, home and community‐based services (HCBS) waiver program using the 2018 PA Autism Needs Assessment survey.…”

“…To the best of our knowledge, few studies have reported findings from statewide surveys designed to identify service needs in individuals with ASD and their families in the US (Mello et al, 2016; Murphy & Ruble, 2012; Ruble & McGrew, 2007; Schott et al, 2020; Turcotte et al, 2016). For example, Schott et al (2020) conducted a statewide survey in Pennsylvania (PA) on adults with ASD and their caregivers on the waiting list for the Medicaid‐funded, home and community‐based services (HCBS) waiver program using the 2018 PA Autism Needs Assessment survey. They found that over 50% individuals had unmet needs relative to functional skill services, vocational services, and mental and behavioral health services (Schott et al, 2020).…”

“…For example, Schott et al (2020) conducted a statewide survey in Pennsylvania (PA) on adults with ASD and their caregivers on the waiting list for the Medicaid‐funded, home and community‐based services (HCBS) waiver program using the 2018 PA Autism Needs Assessment survey. They found that over 50% individuals had unmet needs relative to functional skill services, vocational services, and mental and behavioral health services (Schott et al, 2020). Similarly, in a different statewide study conducted in Kentucky, it was found that caregivers in rural and urban areas both experienced difficulties in accessing appropriate services, trained professionals, and educators for their 2.5–21 year old children and youth with ASD (Murphy & Ruble, 2012).…”