Excerpt from Implementation of remote support services: Pre-COVID-19:

In the US like elsewhere, we have seen a deinstitutionalization movement of people with ID/DD over the last several decades and studies following this movement have reported on the uncontested overwhelming benefits of living in the community (Chowdhury & Benson, 2011; Kozma et al., 2009; O’Brien et al., 2001). As Intermediate Care Facilities for individuals with Intellectual Disability (ICF-ID) and other congregate care settings have continued to reduce the number of people served, the number of people with ID/DD seeking HCBS has increased exponentially. Across the US, the total number of people served in congregate care settings of 16 or more individuals has decreased by 33,519 people since 2007. In contrast, the number of people served in community-based settings of six individuals or less has increased by 191,496 people (Tanis et al., 2020). During the COVID-19 pandemic, people with ID/DD were more vulnerable to experiencing more severe symptoms, hospitalizations, and death as a result of COVID-19 (Henderson et al., 2021; Turk et al., 2020). Generally, people living in congregate settings, including ICF-ID settings, were reporting COVID-19 infection rates that were alarmingly higher than for people living in smaller community settings (Doody & Keenan, 2021). 

The CMS had encouraged service recipients to explore alternative options as noted by this statement, “The COVID-19 crisis has shone a harsh light on the human costs of a long-term care system that relies too heavily on institutional services like nursing homes. Too often, they are seen as the default option, even for those who may not require round-the-clock care” (Centers for Medicare & Medicaid Services, 2020, para. 2). This increased demand placed an unprecedented burden on the Home Health Aides workforce, including direct support professionals (DSP), to support individuals with ID/DD. Home Health Aides are among the most in-demand occupations in the US. In fact, the Bureau of Labor Statistics has estimated that between 2019 and 2029, the demand for Home Health Aides would see an increase in demand that is “much faster than average” (34%; Bureau of Labor Statistics, U.S. Department of Labor, Bureau of Labor Statistics, 2020). 

The increase in people seeking alternative options additionally places a burden on state departments of developmental disabilities to provide funding for programs that are alternative to ICF-IDs. In the majority of states, the result has been to relegate people with developmental disabilities to wait lists for services. Though some states have avoided the need for a wait list, 36 states have not had that same success. A total of 473,000 individuals with ID/DD from these states are awaiting for services. Additionally, the average time spent on a wait list before receiving state Medicaid funded HCBS developmental disabilities waiver services is five and a half years (Musumeci et al., 2019). It is possible that technology could be one solution to the growing problem of the waitlist.

In FY2017, $12.285 billion federal-state HCBS waiver funds were spent, accounting for 65% of total spending. Only 20 years prior, in 1997, less than a total of 5 billion dollars were spent, including federal-state HCBS waiver and non-waiver spending (Tanis et al., 2020). The expense of HCBS is a barrier that keeps many from being able to use self-directed services. It is apparent that in order to reduce the people on the wait list, alternative and less costly services that continue to meet the needs of individuals with developmental disabilities must be considered.