40 Big Ideas

Summary

Direct support professional (DSP) is now the most-used occupational title for direct support staff in services for people with IDD. It reflects the many roles DSPs take on to support people with disabilities to live, work, play, and learn. DSPs support people in managing their health and daily living tasks, making decisions, and getting to work. They have to make ethical decisions, implement complex behavioral plans, and generally support people to have valued community roles.

As deinstitutionalization created a new model of community living for persons with intellectual and other developmental disabilities (IDD), services were needed to support people to live and engage in their communities. Staff roles and staffing patterns in this new model were very different from those in institutional settings. They often used a live-in house parent(s) model, in which (most often) married couples provided the support and lived in the group home. This model was not sustainable as group living and day services expanded. Staffing patterns changed to a shift model, and specialized support from clinical specialists became available. The emergence of more individualized services caused staffing needs to be less predictable, as they were based on what each person needed when, and when they needed it. These staff members became more isolated and had less access to other resources.

It was clear that the role of staff who support people with IDD in the community was complex and highly skilled. Policy makers, advocates, employers, and most importantly, people who received services had high expectations. From the very beginning of community-based services, this workforce was expected to do more: pass medications; identify signs and symptoms of illness; ensure people were free from neglect, abuse and exploitation; make ethical decisions; implement complex behavior support plans; provide medical interventions as prescribed; engage with families; support people to have valued roles in the community; develop and sustain interests and relationships while providing culturally responsive services; and so much more.

At the same time, while roles had changed and expectations increased, worker wages, benefits, and ongoing professional development were far less than those provided in institutions. Essentially, the community-based services system promised states that it would cost less, and this was realized on the backs and out of the pockets of the direct care workforce. Wages have always been at or below the poverty level for a family of four, and while benefits are offered, most direct care staff do not use them because they are cost-prohibitive. Historically, direct support turnover rates have hovered around 50% and vacancies between 10-20%, while training for someone entering this profession is typically two weeks of post-hire orientation.

Acting to professionalize the direct support workforce in the mid-1990s, a group of advocates, people with IDD, family members, and national organizations outlined what was needed to stabilize the workforce:

1. A commonly known and understood professional title. Direct support professional (DSP) is now the most-used occupational title for direct support staff in services for people with IDD. It reflects the interdisciplinary nature of DSP work. Efforts are underway to urge the U.S. Department of Labor (DOL) to recognize this as a standard occupational code tracked by the Bureau of Labor Statistics.
2. Data describing the workforce. The size, demographics, and projected growth of the direct support workforce were unknown until Opportunities for Excellence . Voices and Visions: Building Leadership for the 21st Century PCMR Report 1996

We have come a long way in celebrating, understanding, and recognizing the importance of this workforce, but DSPs deserve a standard occupational code, living wages so they do not have to work several jobs to make ends meet, and access to affordable benefits. Their voices need to be heard, and they need to lead advocacy efforts for their profession. We must push state legislatures, Congress, and employers to uplift this as a viable profession and career choice.