I recently came across the story of a woman with Down syndrome who had been cared for by her mother for her whole life. The mother got older, and caring for her daughter got more difficult. The woman’s sister kept raising the questions about what was going to happen when Mom could not longer care…
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…
Death is one of the most universal human experiences, and yet, for many caregivers, parents, and support staff, it remains one of the hardest topics to bring up. A common concern I hear is that parents/caregivers and staff don’t know what to say in those moments when someone is dying or has died. But picture…
Are Staff Members Friends? Why This Question Matters for People with Disabilities When I work with people with disabilities, one of the patterns I see most often is the blurring of the line between paid staff and genuine friends. This isn’t anyone’s fault. The staff I work with genuinely like the individuals they support. But…
I’ve been studying thanatology (the study of death, dying, grief, and loss), and I’ve noticed that many of its essential ideas should also be applied to people with disabilities. Recently, I’ve been reading about maintaining dignity during end of life using the Dignity Conserving Model developed by Harvey Chochinov. There is a very real potential…
I want to share an experience I had with a client. All information is general, and no identifying details are included. I recently worked with an individual who wanted more control over her money, but her family was currently managing it. The client is her own guardian, so technically she should have been allowed to…
When we work with adults who have disabilities, it’s easy to focus only on what’s happening on the surface. We see the behaviors, but we often don’t consider the underlying thoughts, feelings, and past experiences that might be driving them. As Mona Delahooke wrote in her book, Beyond Behaviors: Using Brain Science and Compassion to…
One major shift that I believe needs to happen in the field of ABA is when and how we reward behaviors. Too often, individuals—especially adults with disabilities—are asked to prove that they “deserve” autonomy, independence, or choice. In practice, this means many ABA professionals and staff require people to earn basic human rights before granting…
Have you heard the term “secondary losses”? As I was researching grief in individuals with disabilities, this term came up a lot. A “primary loss”, is the actual loss that occurred (e.g. your brother dying, your favorite roommate moving out) and it can be painful. “Secondary losses” are the losses that come because of the…