COVID-19 and Persons With Intellectual and Developmental Disabilities: Implications for Future Policy, Practice, and Research.

The COVID-19 pandemic has been hard for everyone. For the estimated seven and a half million people in the United States who live with intellectual disability (Residential Information Systems Project, 2020), it has been very hard. Lives have been disrupted by lost jobs, lack of access to friends/family, and challenges finding enough staff to provide supports and needed healthcare. Studies have shown that people with IDD are at a much greater risk of getting COVID-19 and dying from it (Cuypers et al., 2020; Gleason et al., 2021; Kaye, 2021; Landes, Turk, & Ervin, 2020; Nygren & Lulinski, 2020). Without question, people with intellectual and developmental disabilities (IDD) struggled as the COVID-19 pandemic began and as it has continued. Too many were isolated from friends and family for far too long. Too many were lonely and bored. Too many have not received the support they have needed during the pandemic. Far too many were denied treatment and far too many have died. As a nation we must reflect on what has happened and listen to people with IDD and their families about their experiences. This commentary reflects on the implications of COVID-19 for research, policy, and practice through the lens of people with IDD.

Incentives, Wages, and Retention Among Direct Support Professionals: National Core Indicators Staff Stability Survey.

Direct support professionals (DSPs) provide a range of supports in a variety of settings to people with intellectual and developmental disabilities (IDD) who count on these supports to live, work, and contribute in their communities. Despite this, high annual DSP turnover rates are problematic. DSP turnover is disruptive to people who receive supports as the lack of stable, reliable supports can negatively impact their important day-to-day outcomes (e.g., safety, community participation, and choice). Turnover also comes at a cost to provider organization in the hiring and training of new employees. To retain DSPs, organizations offer incentives (e.g., bonuses, retirement plans, health insurance). This study utilized National Core Indicators® (NCI®) Staff Stability Survey 2018 data to examine the relationships between wages, different types of incentives, including benefits (e.g., paid time off, access to health insurance, disability insurance, wage bonuses, health incentives programs, etc.) to annual turnover in participating states in the United States. Results indicated that incentives were not positively associated with DSP retention. Staff wages were the most notable factor associated with differences in DSP retention rates, along with the state in which the organization was located as well as organization vacancy rates.

Introduction to the Special Issue: Understanding the Direct Support Workforce in the United States.

This special issue on the direct support workforce highlights the critical role of the direct support workforce in the quality of life of people with intellectual and developmental disabilities (IDD) in the United States. Although there is increasing demand for this workforce, challenges in the recruitment, training, and retention of direct support professionals (DSPs) threatens the safety, health, and full inclusion of people with IDD living in the community. This special issue brings to the forefront current research to understand this workforce and their importance and to consider strategies to address the complex challenges facing DSPs so that people with disabilities can live and thrive in their communities.

Predictors of Annual and Early Separations Among Direct Support Professionals: National Core Indicators Staff Stability Survey.

Direct support professionals (DSPs) provide a broad range of supports in a variety of settings to people with intellectual and developmental disabilities (IDD) that enables people to live, work, and participate in their communities. Despite the crucial importance in ensuring supports for community participation of people with IDD, high rates of annual turnover among DSPs in organizations that employ them have been documented for decades. This study utilizes National Core Indicators Staff Stability data from 2016 to examine the impact of organizational- and state-level factors related to DSP turnover, including annual DSP turnover and the percentage of DSPs who left their positions after less than 6 months. At the organizational level, a higher turnover rate in the last 12 months was significantly related to lower DSP wages and to not offering health insurance. At the state level, a higher turnover rate in the last 12 months was significantly related to a lower percentage of people living in individualized settings and lower per capita Medicaid spending. For early turnover at the organizational level, a higher percent of leavers within 6 months of tenure was significantly related to not offering paid time off and health insurance, higher vacancy rates, higher proportion of part-time DSPs, and lower overall staff sizes.

Conclusion to the Special Issue: Understanding the Direct Support Workforce in the United States.

This special issue sheds light on the needs of the direct support professionals (DSPs), as well the possibilities when positive practices are implemented. A commitment to quality services and quality lives requires a commitment to finding solutions that better support DSPs so they can afford (emotionally, physically and financially) to keep doing the work they love. Improving supports to people with IDD is contingent on improving the compensation, working conditions, professional development, and career opportunities of DSPs.

Responsiveness to Self-Report Interview Questions by Adults With Intellectual and Developmental Disability.

An important line of research involves asking people with intellectual and developmental disability (IDD) to self-report their experiences and opinions. We analyzed the responsiveness of 11,391 adult users of IDD services to interview questions from Section 1 of the 2008-2009 National Core Indicators-Adult Consumer Survey (NCI-ACS). Proxy responses were not allowed for the selected questions. Overall, 62.1% of participants answered the questions and were rated by interviewers as understanding the questions and as responding consistently. Most participants responded in an all-or-none fashion, answering either all or most questions or few to none. Individuals with milder levels of IDD and with speech as their primary means of expression were more likely to answer the questions and provide a scoreable response. Interviewer ratings of interviewees' answering questions, understanding of questions, and consistent responding were each related to responsiveness.

Multiperspective analysis of workforce challenges and their effects on consumer and family quality of life.

The impacts of direct support professional turnover, wages, and vacancy rates as reported in interviews with 372 adult service recipients and 20 county managers and surveys of 183 families, 520 service coordinators, 228 direct support professionals, and 184 residential and 82 vocational managers were examined. Direct support professional turnover, wages, and vacancy rates were reported to be barriers to high quality supports, serving people waiting for services, and providing in-home or respite services. Higher direct support professional turnover was associated with lower wages and supports in urban counties. Multivariate analyses of covariance revealed a complex pattern of significant associations between quality of life outcomes; level of mental retardation, medical status, site size (for vocational settings); and direct support professional vacancy rates, average wage, and turnover rates.

Role and essential competencies of the frontline supervisors of direct support professionals in community services.

Although frontline supervisors are responsible for on-site management, supervision, and training of direct support professionals, research on the nature, content, and skills of the frontline supervisor role is rare. In this paper we describe results of 12 job analysis and three validation focus groups constituted to describe core competencies for supervisors in organizations providing community supports for people with disabilities. The focus groups involved 146 participants, including 97 direct support professionals, 40 frontline supervisors, and 7 managers who supervise frontline supervisors. The focus groups identified 14 competency areas in which frontline supervisors need to be proficient. In each competency area, between 4 and 26 specific competency statements were identified (a total of 142) along with 340 performance indicators.