Personal emergency response systems and people with intellectual and developmental disabilities in the United States

Abstract

Personal Emergency Response Systems (PERS) are electronic medical alert devices that help people with intellectual and developmental disabilities (IDD) receive assistance in emergencies. According to research on older adults, PERS improve health outcomes, provide people with a sense of security and peace of mind, promote independence, and prevent institutionalization. The aim of this study was to examine if, and how, states provided PERS to people with IDD in their Medicaid Home and Community Based Services (HCBS) waiver programs in fiscal year (FY) 2021. To do so, we qualitatively and quantitatively analyzed HCBS data on participant services and cost‐neutrality demonstrations to examine thematic trends in how and why states offered PERS, as well as total unduplicated participants, total projected spending, projected spending per participant, reimbursement rates, and annual service provision per participant. In FY 2021, 42 waivers (39.25%) from 25 states and the District of Columbia (57.78%) projected spending $9.87 million on PERS services for 9538 people with IDD. PERS services included the installation of devices (77.78%), monthly service fees (73.61%), equipment maintenance (44.44%), and training of people with IDD or their caregivers about the equipment (41.67%). States said they provided PERS in order to prevent institutionalization (23.61%), promote independence (16.67%), and maximize mobility (11.11%). Given the potential benefits for independent living, independence, and reducing costs, as well as the disparities unearthed in this study, we believe states should expand how they provide PERS to people with IDD in HCBS and do so in a more consistent manner. This may be especially beneficial as PERS can be cost‐prohibitive for many people with IDD, who frequently live in poverty, and HCBS reimbursement for technology is the top barrier to implementing technology according to IDD providers.

The perspectives of people with intellectual disabilities on their experience of voting in UK general elections

“…This research represents the perspective of people with intellectual disabilities about their own UK general election experiences within the academic literature for the first time, building on previous academic research which does so beyond the UK (Agran et al, 2016; Friedman, 2018; Friedman, 2019; Kjellberg & Hemmingsson, 2013) and considering the Scottish Independence referendum (Willis et al, 2016).…”

“…Despite this interest, there has been limited voting research directly involving people with intellectual disabilities. Globally, people with intellectual disabilities have been involved in interviews conducted by Kjellberg and Hemmingsson (2013) in Sweden and focus groups conducted by Friedman (2018, 2019) plus semi‐structured interviews conducted by Agran et al (2016) in the United States. In the United Kingdom, Willis et al (2016) reported on focus groups concerning the Scottish Independence referendum and Chadwick et al (2017) published an easy‐read report about focus groups and interviews concerning the 2015 general election.…”

“…There may be some differences in the data obtained (e.g., interviews may be shorter and less detailed) but there is literature specifically concerned with interviewing people with intellectual disabilities available to guide such research (Perry, 2004; Prosser & Bromley, 1998) and previous voting research involving people with intellectual disabilities (Agran et al, 2016; Friedman, 2018; Friedman, 2019; Kjellberg & Hemmingsson, 2013; Willis et al, 2016) demonstrates that meaningful engagement is possible.…”