Category: Trauma

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Supporting People with Disabilities who Experience Grief/Loss

Losing someone is difficult, but it can be even harder for people with disabilities. This is because, the research shows that we do not often prepare people with intellectual disabilities to handle grief and loss. In fact, in worse case scenarios there is a tendency to assume that the grief/loss won’t impact them at all. This is called “disenfranchised grief” and it essentially means that a person’s experience with grief and loss is not recognized or acknowledged by other people; which also means that the person won’t get the needed support to cope with grief and loss. This means that their overall mental health will be negatively impacted.

In general, death is a difficult thing for society to talk about. It is a topic we often avoid, so it makes sense that we would have a hard time talking about death with people who have disabilities. This reason parents/caregivers/staff do not prepare people with intellectual disabilities about death include:

  1. They worry that the individual won’t understand the concept, so they don’t bring it up
  2.  They worry that talking about death will increase the risk of difficult behaviors
  3. They don’t think that they are not capable of helping the person with the disability through the grief, so they avoid it.

The problem is, not talking about grief/loss and not preparing people with disabilities for grief and loss can negatively impact their overall mental health. In fact, many people with disabilities may develop “complicated grief” (a longer lasting and more debilitating type of grief than normal grieving), because they aren’t prepared for the loss. Let’s look at why our reasons for not supporting someone with a disability through their grief may not be the vest choice:

  1. The caregivers/guardians/staff worry that the individual with the disability won’t understand the concept, so they don’t bring it up
    • We need to presume competence. There is a tendency to assume that someone with a disability does not understand complex concepts; we might base this assumption on IQ or we might base it on what we observe. However, it is ableist to assume that someone’s IQ correlates with their intelligence and their ability to understand concepts. There are numerous books/articles/blogs written by people with disability that show profound intellect.
    • Even if someone does not understand the concept of death, that doesn’t mean that they aren’t impacted by the loss. You don’t have to have a high IQ for loss to impact you.
  2. The caregivers/guardians/staff worry that talking about death will increase the risk of difficult behavior
    • This is known as diagnostic overshadowing, it is when we think that a behavior simply occurs because of their disability. When this happens we don’t address the core reasons for why the behavior is happening– which means that the behaviors will often continue. If someone is displaying aggression because they are stressed that their caregiver passed away, addressing the grief/loss is going to do more good than our typical behavioral strategies (i.e. token economies, extinction, etc).
    • Some research has shown that talking about loss/grief makes the person with the disability feel supported and less likely to engage in inappropriate behaviors. Thus, the behaviors that we see after a loss may be happening because they aren’t feeling supported in their grief, not solely because of the grief.
  3. The caregivers/guardians/staff don’t think that they are capable of helping the person through the grief, so they avoid it.
    • Research shows that many individuals with disabilities can benefit greatly from a simple supportive environment and more intense therapy may not be needed if they simply have that. If all that is needed is a supportive person, we ALL have the knowledge and capacity to support individual with a disability through their grief. One research article said it best when they said, “Grief itself is not pathological and it is a normal part of the life course, staff/parents/caregivers should be capable of offering, accepting and giving honest support” (Clute, M., 2010 p. 167)

How can we help people with intellectual disabilities through grief?

  • One of the most important ways to help someone through an upcoming loss is to involve them in the rituals surrounding death and loss. This means that we give them the opportunity to go to the funeral, visit the grave site, etc.
  • Let the individual help you memorialize the person they lost- a book with pictures of fun things they did together, write a letter to the person you lost, organize a charity event if their honor if they passed away from a specific reason
  • Bibliotherapy and reading books about death/loss. Sometimes those books can give us a script if we aren’t sure how to verbalize things
    • The book below is one I really like:
  • Normal their feelings. All responses to grief are normal. Anger is normal, numb is normal, sadness is normal and peace is also normal. It is so important to normalize all the feelings surrounding grief and it is important to normalize their unique path.
  • Empathetic listening. Just listen and sit with the person in their grief.
  • It is also important to know that even with these supports, some individuals with a disability will need to receive more intensive counseling from a trained professional.

Looking for easy to access information? Check out this free resource?

https://www.teacherspayteachers.com/Product/Trauma-Informed-Interventions-Medical-Trauma-and-Grief-12915958

For more information, check out these articles:

  • Bereavement Interventions for Adults with Intellectual Disability: What Works? By Mary Ann Clute (2010)
  • Beyond Silence: A Scoping Review of Provided Support for Grieving Children with Intellectual Disability or Autism Spectrum Disorder by Maria Bonin, Lilly Augustine and Qi Meng (Journal of Death and Dying 2024)
  • Supporting People with Disabilities Coping with Grief and Loss: An easy-to-read booklet By Hrepsime Gulbenkoglu 2007
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Trauma Training in Thailand

These were the amazing graduate students that I got to work with from Mahidol University in Thailand.

In my last post I talked about doing some ACT exercises with the Thai staff at rural orphanage in Kanchanaburi. In this post I want to talk about buffers to trauma and how absolutely amazing the Thai people are.

Usually when I am providing training on how to work with clients/students who have been through trauma, my first and most important recommendation is to regulate yourself. If you are dysregulated when a child is having a “stress response” or a “trauma response” then you are going to make the situation worse. This is because, when a child is having a “stress response” or a “trauma response”, they are not misbehaving (this term indicates that they are choosing to behave in specific way), their body and their nervous system is responding to a perceived threat. When we, as staff and teachers, are also dysregulated we are sending off signals of threat; this means that we are not helping the child to calm down we are telling their body to continue to react to the threat (us).

This ability to model regulation so that another person can start to regulate themselves is called “co-regulation”. There is also of documentation and research to show how effective this process is when working with… well, anyone who has a dysregulated nervous system, but especially for someone who has been through trauma. The Thai people are already doing this and did not need tons of instruction in this area. This was so beautiful to see!

I met with Camille Kolu (an amazing expert in the field of trauma) before I went to Thailand. We talked about what the most important topics of conversation/training would be for staff in Thailand. Camille brought up that there is research that shows there are six buffers to trauma. This means that are six things that can serve as a buffer and build resiliency in someone who has been through trauma. These buffers can increase someone’s ability to go through trauma without drowning in the trauma. These six barriers are:

  1. Nurturing Relationships in your life
  2. Exercise
  3. Stress Relief
  4. Mental Health
  5. Sleep
  6. Nutrition

The picture above shows the six barriers in Thai.

During the staff training, we introduced these six barriers and asked each staff member the following questions:

  • What buffer are you already getting a lot of?
  • What buffer do you need more of?
  • What can you actively start doing to get more of that buffer in your life?
  • Think of a child in your care and answer the same questions.

It was especially pertinent to have the staff do this exercise for themselves. Working with individuals who have been through trauma can be so difficult and can cause vicarious trauma and burnout. I felt that it was especially important to address this and provide validation for the staff who are already doing a very hard work. Additionally, when the staff are taking care of themselves, they will be better able to take care of the children in the orphanage.

We got an incredible reception from this exercise. The staff said that they felt “heard” and “seen”. They also felt like they had a renewed energy and commitment to working with the children.

What I learned from this experience is that there are a lot of cultures that are already working well with people who have been through trauma. And America can and should learn a lot from those cultures.

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