Feature Issue on Engaging Communities Underrepresented in Disability Research

Clear-language summary

The movement of people with intellectual and/or developmental disabilities (IDD) out of institutions and into the community over the last several decades happened in part because of the hard work of direct support professions (DSPs). Today, about 1.4 million DSPs support people with IDD in the United States. Just like the people they support, DSPs have diverse racial, ethnic, cultural, and other backgrounds.

To better support people with IDD and DSPs, we need to learn more about how people from historically marginalized groups experience community living. We need to talk directly with DSPs about how best to engage them in research and about what makes a healthy work culture for them and for the people they support. What does the service system need to do to better support DSPs from diverse cultures? What rights and responsibilities do families and people with IDD have when it comes to treating DSPs with respect?

Being a DSP is challenging, but rewarding, work and the consequences of failing to treat people in this profession well are dire, given the workforce shortage. We can’t go back to the days of institutional care, but we also can’t stand for the continued lack of staffing resources. It may cost a lot to make these changes, but we must make them in order to achieve inclusion.

The shift from institutions to community inclusion for people with intellectual and developmental disabilities (IDD) over the last 30 years happened in large part because of the dedication of direct support professionals (DSPs). Their work has made possible the disability field’s definition of community as it moved the goalpost from “not being in an institution,” to “being in the community,” and, now, to “being of the community and belonging.”

Today, there are approximately 4.7 million direct care workers in the United States supporting aging adults and people with disabilities, according to the Bureau of Labor Statistics. Of these, about 1.4 million are DSPs supporting people with IDD, according to a 2017 report from the President’s Committee for People with Intellectual Disabilities.

Just like people with disabilities, the direct care workforce is diverse. Sixty percent of the workforce are people of color and 87% are women aged 25 to 64, according to a PHI report last year. The median age of workers is 47. Women of color comprise more than half of the direct care workforce and experience more economic insecurity than white or male counterparts. Immigrants make up a substantial portion of the long-term care sector (28%) and are more likely to stay in this role for one year or longer, compared with U.S.-born citizens. Given this diversity, it is likely that a DSP will support someone with a disability who has a racial, ethnic, cultural, or linguistic background that is different from their own.

The quality of life for people with IDD has improved significantly over the past 30 years, but the same cannot be said for the work life of DSPs. The unfortunate truth is that we built our system of community-based services by promising to work for about 30% less than the cost of institutional services. The savings came through lower wages and benefits paid to direct support staff. And we have never caught up. To underscore the significance of low wages in direct support, 50% of the workforce rely on public assistance.

For decades, this workforce has seen turnover rates close to 50%, with 35% leaving within the first six months. Vacancy rates for part-time staff average 12.3% for part-time workers and 16.4% for full-time workers, according to a 2020 National Core Indicators report . The well-documented reasons for this churn include inadequate pay and benefits, the stress of the work, lack of advancement opportunities, lack of supervision, and insufficient training. The many workforce stressors are compounded by working in a position that is undervalued, underpaid, and underappreciated, and DSPs often hold multiple positions in order to make ends meet, which makes them susceptible to errors and sleep deprivation. Turnover and vacancy are especially difficult on the people receiving supports, resulting in increased instances of injuries, abuse, and neglect. The difficulty in finding and keeping DSPs has lengthened waiting lists for community services and, increasingly, signaled a return to segregated and institutional care.

Historically, institutional staff provided custodial care to individuals with IDD in large congregate settings. Today, DSPs work as interdisciplinary professionals in various community settings. Their job is complex and demanding, with roles that include teacher, nurse, counselor, dietitian, psychologist, physical therapist, occupational therapist, employment specialist, chauffeur, recreation specialist, life coach, and more. They require strong problem-solving skills and are often faced with making ethical decisions affecting the individuals they support.

Despite the high level of skill and decision-making required of DSPs, the work is often described as entry-level caregiving and pay is below that of most fast-food jobs. The Bureau of Labor Statistics does not recognize the role of “direct support professional” with a standard occupational classification, as it does with most professions. The broader field of direct care is among the fastest-growing occupations in the United States, but increasing demand for services has not affected the supply of people working in direct support.

Meanwhile, service provider agencies struggle to attract and retain skilled DSPs as frontline workers face the increasing challenges of working with the rising number of people with more complex disabilities who live and work in communities and neighborhoods of their choosing.

With the COVID-19 pandemic, conditions became even worse. In 2021, most service providers were turning away new referrals, particularly those with higher staffing needs. More than a third of providers discontinued programs and services, and waiting lists grew longer. Staff shortages increased and people's routines were disrupted, compounded by mandatory lockdowns. A study conducted by the Institute on Community Integration and the National Alliance for Direct Support Professionals found that direct support workers experienced significant mental and health concerns because of the pandemic, including depression, anxiety, sleep difficulty, burnout, and post-traumatic stress disorder. Many worked longer shifts, and Black and African American DSPs have shouldered the extra hours disproportionately. DSPs were and continue to be exposed to traumatic experiences, and exposure to a greater number of traumatized individuals supported is significantly correlated with symptoms of secondary traumatic stress.

To better support DSPs and people with IDD receiving support, we must pursue the following research questions:

1. How is community living experienced by people with IDD from historically marginalized groups, and what are the implications of that on DSP competencies? We need to validate these competencies with people from diverse racial, ethnic, linguistic, and cultural backgrounds who receive support services.
2. What is known about how to best engage DSPs early in the research process? We need to gather information directly from DSPs, rather than provider agencies, and be sure to get representative samples from diverse racial, ethnic, linguistic, and cultural backgrounds.
3. What differentiates a healthy workplace culture from the perspective of DSPs and people with disabilities? What are the attributes? What are the outcome differences among DSPs who report working in a healthy environment? What actions support wellness and positive mental health? What discrepancies exist between the DSP perspective and the organizational perspective on organizational culture?
4. What are the home and community-based services system drivers and pressures? What does the system need to do to better support the diversity of the workforce?
5. How do we best support families from diverse backgrounds who may be self-directing and how do we increase informed choice on support options?
6. What new models can be developed that are reflective of what people and families across diverse racial, ethnic, cultural, and linguistic backgrounds prefer and need, given the workforce shortage?
7. How do we best support DSPs from diverse racial, ethnic, linguistic, and cultural backgrounds working with individuals with IDD and their families in their homes? What are the rights and responsibilities of the family and the individual to engage in respectful treatment of the DSP so that the level of trauma is reduced? What mediation strategies are best for improving these working relationships, and what intervention research will help?

Supporting someone with IDD to truly belong in their community is challenging, yet highly rewarding work, and the consequences of failure are dire. We abhor the notion of turning back to the days of largely institutional care, but we also cannot abide the mistreatment or lack of resources that so many people with disabilities have suffered because trained professionals have been so hard to come by. The answer is not to lower the goal, but to allocate the resources necessary to attract and sustain a competent workforce, and to implement federal and state policies that improve the work environment. This may be difficult to hear and the strategies may be costly, but they are critical to realizing the dream of true inclusion.