Direct Support Workforce Status Under Self Directed Supports for People with Intellectual/Developmental Disabilities

Purpose: Since Lakin & Bruininks first investigated the issue in 1981, there has been acknowledgement of the looming crisis in the direct support workforce that provides services to individuals with intellectual and developmental disabilities (IDD). Demand for direct support workers (DSWs) will increase 37% by 2025 (Hewitt et al., 2008). Simultaneously, people with IDD and their advocates have urged service options that increase self determination and community inclusion. Self directed support options, which are fully implemented by 13 states (Walker et al., 2009) are one option for easing the DSW shortage while increasing the self determination of individuals with IDD. Little is known, however, about the direct support workforce in the context of self directed services.

Methods: A mail-based survey was distributed to individuals who used one state's self directed services option for people with intellectual and developmental disabilities. Using a stratified random sampling procedure that was weighted to survey recipients in urban, suburban and rural areas representing the state's population distribution, 369 surveys were distributed via county social services divisions, with a 30.4% response rate (n=112). The survey sought information regarding the greatest staffing benefits and challenges experienced by consumers with IDD while using the self directed option, as well as staffing recruitment, compensation, training, and retention patterns.

Results: The majority of respondents reported the self directed option made it easier to find, train, and retain staff when compared with traditional agency controlled services. The most commonly cited benefits of the self directed option were being able to hire people they knew (reported by 82%) and being able to set staff wages (82%). Hourly wages ranged from $5.00 to $28.50, with a mean of $12.76, with longer tenured staff receiving somewhat higher than expected pay (÷2 (12, n=151) =21.46, p=.044). DSWs who were previously unknown to the service user were paid at a higher rate than friends and family members (÷2 (12, n=173) =21.37, p=.045). While wage rates were generally higher than national trends for community-based services, the rate of fringe benefit provision was much lower, with less than 20% of DSWs working for the respondents receiving any type of fringe benefit. Binary logistic regression analysis indicated that age under 22 years, residence in the metropolitan core of the state, and higher individualized service budgets are all significant predictors of current program usage status, suggesting that adults, rural residents, and people with low budgets may leave the self directed option in favor of traditional service models.

Implications: Lower than expected rates of fringe benefit provision may pose a threat to the long term viability of self directed supports, although policy solutions such as Medicaid buy-in options for DSWs or benefit pooling among service users may be able to mitigate this threat. Self directed services have promise for stabilizing the direct support workforce and increasing self determination for people with IDD, but alterations in traditional power dynamics and social capital arrangements pose challenges. Additional comparison of the direct support workforce in traditional and self directed service models is needed.