Abstract

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.

The publication of this special issue of Intellectual and Developmental Disabilities comes at a time when there is a growing demand for direct support professionals (DSPs) to support people with disabilities in the community. DSPs are staff who are employed to “provide a wide range of supportive services to individuals with intellectual or developmental disabilities (IDD) on a day-to-day basis, including habilitation, health needs, personal care and hygiene, employment, transportation, recreation, housekeeping and other home management-related supports, so that these individuals can live and work in their communities and lead self-directed, community and social lives” (Congressional Record, November 4, 2003, p. H10301). DSPs are interdisciplinary professionals. They (a) develop and implement effective strategies to teach people new skills; (b) dispense medications, administer treatments, document care, and communicate with medical professionals; (c) assess needs, implement specific treatment plans, and document progress; (d) connect people to community resources and benefits; and (e) listen, reflect, and offer suggestions (President's Committee for People with Intellectual Disabilities Report to the President [PCPID], 2017). DSPs, who may be full (70%) or part time (30%), work in a range of settings including family homes, people's own homes or apartments, intermediate care facilities, residential group homes, community job sites, vocational and day training programs, and others (PCPID, 2017; PHI, 2016). There is no specific occupational code for DSPs within the Bureau of Labor Statistics (BLS). However, according to the BLS (2016) between 2014 and 2024 there will be a 26% increase in need for personal care aides and a 38% increase in need for home care aides with a 48% increase in total demand (which includes DSPs as well as direct care workers who support the elderly and people with physical disabilities). Demand is due to many reasons: (a) population growth, (b) increased life expectancy among persons with disabilities, (c) aging of family caregivers, and (d) the expansion of home and community-based services. As such, direct support is among the fastest growing occupations in the United States.

This demand is outpacing the supply of available workers. Vacancy rates for part-time positions are 18% and 12% for full-time positions (National Core Indicators [NCI], 2019). The median age of direct support workers is 47, 87% are women, and 60% are people of color (PHI, 2018a). Women ages 25 to 64, the main labor pool from which these workers are drawn, is projected to increase by less than 2 million. Immigrants are a growing part of the direct support workforce with 28% of all health paraprofessionals having immigrated to the United States from other countries (American Network of Community Options and Resources, 2017) and 57% of immigrant direct care workers have been living in the United States for 10 years or more (PHI, 2018b).

DSPs are often thought of as an uneducated workforce; however, 86% have a minimum of a high school education, 19% have an associate's degree or higher, 33% have some college, and 34% are post-high-school graduates (PHI, 2016). In a recent study conducted in Minnesota, 63% of direct support workers were identified as having more than a high school education (Hewitt et al., 2019). Yet, earnings for this workforce are not livable wages with a national average of $12.00 per hour (NCI, 2019). The average DSP wages are below the federal poverty level for a family of four and there is often a lack of paid time off and other benefits. Although 71% of organizations report providing health insurance to their employees (NCI, 2019), it is often unaffordable to the worker (Hewitt et al., 2019). Only 51% of workers rely on means-tested public assistance (including 30% on food and nutrition assistance and 39% on public health insurance) and multiple jobs to meet their needs (PHI, 2016).

Compounding the recruitment challenge, turnover is frequent; 55% of DSPs leave their employment within a year, and roughly 35% do so within 6 months (NCI, 2019). In addition to poor wages, other factors stated for leaving the field include isolation from other workers, high rates of injury, high accountability, insufficient supervision, lack of a career ladder, and insufficient training and professional development (PCPID, 2017). In the Report to the President on America's Direct Support Workforce Crisis: Effects on People with Intellectual Disabilities, Families, Communities and the U.S. Economy, the direct support workforce is cited as one of the highest in demand in the United States (PCPID, 2017). However, the expansion needed in this workforce is unlikely to take place without significant changes in how DSPs are recruited, trained, and supported.

The perpetual DSP crisis lowers the quality of life of people with IDD who need assistance, puts them at great risk of harm, contributes to unreasonably long waiting lists for services, and is leading many people to reconsider more expensive institutional models of segregated care outside their home (PCPID, 2017). The Council on Quality and Leadership recently conducted a study which analyzed over 1,300 Personal Outcome Measures through interviews with people with IDD to examine the impact DSP turnover had on different aspects of people with disabilities' quality of life. They found that people with disabilities were significantly less likely to have almost every quality of life indicator present when they experienced DSP turnover. Compared to people with IDD who did not experience change, people who experienced DSP change in the past 2 years are less likely to experience human security including (a) being safe, (b) having the best possible health, (c) exercising rights, (d) being treated fairly, (e) being respected, and (f) experiencing continuity and security. For example, people with disabilities were 32% less likely to be in integrated environments when they experienced DSP turnover and 17% less likely to participate in community life (Friedman, 2018). For people with IDD to live in their communities, well trained DSPs must be available to and provide the individualized supports necessary for people with IDD to be engaged in all facets of community life (e.g., home, work, education, faith, family, friendship, activity, responsibilities of citizenship; PCPID, 2017).

The Focus of This Special Issue

The articles in this issue focus on research and practices which seek to understand and address the complex challenges facing this workforce. The articles are: (a) “Predictors of Annual and Early Turnover Among Direct Support Professionals: National Core Indicators Staff Stability Survey”; (b) “From the DSP perspective: Exploring the Use of Practices That Align With Trauma Informed Care in IDD Organizations”; (c) “They Care for Others, But What About Themselves? Understanding Self-Care Among DSPs' and Its Relationship to Professional Quality of Life”; and (d) “Implementing Living Independent From Tobacco With Dyads of People With Disabilities and Their Caregivers: Successes and Lessons Learned.” We are grateful to authors who are conducting research in this area and submitted their work for publication in this special issue. They provide considerable expertise to increase our understanding of this important workforce and the complex problem the lack of stability creates.

The intent of this special issue is to help readers better understand the current challenges facing this workforce and to offer evidence-based approaches to (a) address staff instability, (b) ensure DSP health and wellness, and (c) promote an increased understanding of how important DSPs are to the implementation of interventions and approaches that support people with IDD to have good lives. In addition, it is our hope that readers will apply the practical approaches offered and take actions in their organizations and states to better support this workforce, because doing so is critical to improving the quality of life for people with IDD living in homes and communities.

References

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