Frontline Initiative: DSPs Respond to COVID-19

End of Life Resources for Supporting People with Disabilities


Roger Stancliffe is a Senior Researcher at the Institute on Community Integration at the University of Minnesota in Minneapolis, MN. Roger can be reached at

End of life is a challenging issue for all of us. Helping people with intellectual and developmental disabilities (IDD) to understand and deal with this inevitable part of life can be daunting. Fortunately, there are many great resources to help.

Talking End of Life (TEL) is a free online resource designed for direct support professionals (DSPs) as its primary audience/users. TEL has 12 modules, each of which has a resource list at the end. There is a module on Loss, Grief and Mourning which includes video clips, individual stories, discussion questions, and resources. There are lots of relevant materials in other modules, such as —

  • Managing feelings
  • Why is this important?

Stills from Talking End of Life—

dark wood coffin with lavender, pink, and blue flowers on top.

Coffin at a funeral.

elderly caucasian man balding with gray hair wearing a gray shirt and light pants looking at middle aged woman wearing pink sleeveless shirt holding dead pet bird.

Dealing with the death of a pet bird.

two caucasian women wearing black looking at a grave at the cemetery.

At the cemetery after the funeral.

As well as grief and mourning, these experiences of loss may prompt people with IDD to think about their own future dying and death and perhaps even discuss it and plan for it. Modules that are helpful for these purposes include —

  • Your role as a DSP
  • Funeral wishes
  • Bequeathing (leaving your possession to others when you die)

How do I do this?

  • Handy teaching skills
  • Your role as a DSP
  • Managing feelings
  • Cultural beliefs
  • Why is this important?

Teaching how to understand end of life

  • Dying
  • Death
  • Loss, grief, mourning

Teaching the planning options

  • Organ tissue donation
  • Care when dying
  • Funeral wishes
  • Bequeathing

TEL also has a Resources tab. That page has a consolidated list of resources, organized by module, with links and a brief description. We recommend all of these resources. One example is —

  • The Books Beyond Words series

Books designed for people with intellectual disability that include only pictures. This allows you to make the story relevant to the person. Topics include, ‘Am I Going to Die?’, ‘Getting on with Cancer’ and ‘Anne has Dementia.’

The COVID-19 Pandemic has had a profound effect, including but not limited to, dealing with death and dying, often under very difficult circumstances. People with IDD have seen many major disruptions to life that can be difficult to understand and cope with. There are great resources for DSPs supporting people with IDD to stay safe in the pandemic and deal with its restrictions and challenges, including —

  • The CDC has free, online-accessible, COVID-related resources on basics such as getting the COVID-19 shot, washing your hands, having a COVID-19 test(versions in English and Spanish). Formats include (interactive) social stories, videos, and posters.
  • The Self Advocacy Resource and Technical Assistance Center (SARTAC) has a number of plain-language COVID-19 resources available for free download on its website (versions in English and Spanish).
  • The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) has compiled free online resources . These include social stories, plain-language explainers, and tips on staying healthy and safe. These resources are designed for people with ID or autism and use pictures and plain language/Easy English.
  • There is a free downloadable Books Beyond Words publication called Beating the Virus . There are related books (also free), including Good Days and Bad Days During Lockdown and When Someone Dies from Coronavirus: A Guide for Families and Caregivers (from the United Kingdom)
  • The U.S. National Down Syndrome Society (NDSS) has online resources on COVID-19 and Down syndrome