The Unsung Role of Direct Support Staff in Bereavement Care for People with Disabilities
The reason that I first got into Thanatology (the study of death, dying, and living) was because I noticed that many of the disabled adults I work with were experiencing the death of caregivers. While the death of a caregiver is hard for anyone, it seemed to be much harder for my clients. This was due to a variety of factors: people with disabilities have rarely received any sort of death education, and so sometimes even the word “death” is new for them; in an effort to shield them from pain, they were not frontloaded when an illness occurred; sometimes they were not even told until after the person had died; they were not involved in death rituals (e.g., funerals); and their grief was invalidated by others (that could be a whole blog post in itself).
Watching this happen over and over again is what pushed me to start looking for better ways to help. When I was researching ways to support adults with disabilities through death losses, especially those that live in group homes, I found some incredible research that talks about using direct care providers/staff as a support when a death loss occurs.
In group home settings, direct support staff (DSPs) are uniquely positioned to provide grief support to people with disabilities. Because they are present consistently (including overnight and during hours when therapists or other professionals simply aren’t available), they are often the first person a resident turns to after experiencing a loss.
DSPs often know more about the client since they are with them consistently and for long periods of time. They understand their communication style, their routines, and their history, and they’ve often built genuine trust over time. This makes them far better equipped to offer immediate, compassionate support than a clinician meeting the person for the first time in a moment of crisis.
This matters especially because people with disabilities face significant barriers to accessing traditional grief therapy, including: communication and cognitive differences that make standard talk therapy a poor fit, a lack of mental health providers trained in disability-competent care, fixed incomes, and logistical challenges like transportation (how will the person get to their therapy meetings?) and staff scheduling (is staff available to take them?).
Rather than waiting for formal support that may never come, training DSPs to respond to grief in the moment can bridge a critical gap and ensure residents don’t face loss alone.
Remember, we are not expecting them to be therapists or counselors — they are there to support. In order to help them succeed in this role, we need to first provide education. Research points to several key areas that DSPs should be educated on before stepping into this role:
- What is bereavement and why do we grieve
- Complicated grief and risk factors
- Grief is not “challenging behaviors”
- What grief responses to be aware of
- Why grieving is harder for people with disabilities
- What to do when a death anniversary comes up
- Maintaining connections with the deceased (memorials, positive memories, keeping pictures up)
- Preparing for bereavement and practical support
- Ways to take care of yourself
Researchers have found that simple one- to two-day trainings increase DSPs’ knowledge and understanding of grieving as it relates to people with disabilities. This increases their overall ability to support individuals with disabilities, which may subsequently reduce behavioral and mental health problems associated with complicated grieving (Watters, 2011). When I think back to those clients who were grieving without support, I’m reminded of why this work matters and why training DSPs is one of the most meaningful things we can do.
If you want more in depth information about this, check out my CEUs for BCBAs here:
If you want more in depth information about this, check out my CEUs for BCBAs here:
References:
Dodd, P., McEvoy, J., Guerin, S., McGovern, E., Smith, E., & Hillery, J. (2005). Attitudes to bereavement and intellectual disabilities in an Irish context. Journal of Applied Research in Intellectual Disabilities, 18(3), 237–243. https://doi.org/10.1111/j.1468-3148.2005.00222.x
Murray, G. C., McKenzie, K., & Quigley, A. (2000). An examination of the knowledge and understanding of health and social care staff about the grieving process in individuals with a learning disability. Journal of Learning Disabilities, 4(1), 77–90.
Reynolds, S., Guerin, S., McEvoy, J., & Dodd, P. (2008). Evaluation of a bereavement training program for staff in an intellectual disabilities service. Journal of Policy and Practice in Intellectual Disabilities, 5(1), 1–5. https://doi.org/10.1111/j.1741-1130.2007.00132.x
Watters, L., McKenzie, K., & Wright, R. (2011). The impact of staff training on the knowledge of support staff in relation to bereavement and people with a learning disability. British Journal of Learning Disabilities, 40(3), 194–200. https://doi.org/10.1111/j.1468-3156.2011.00693.x