Losing a loved one is hard. For an individual with intellectual disabilities (ID), manifestation may come in unusual behaviors. Since the advancement of medical science, life spans have increased, including those with ID. Deinstitutionalization, which took place in the 80’s, allowed individuals with ID to leave large institutions, and live with loved ones or in small group homes where long-lasting relationships form. Unusual behaviors, such as the inability to communicate their feelings or “acting out”, exhibited by an individual with ID cause concern for caregivers and therapists. Some caregivers may feel that since the individual with ID may not understand, they may not allow them to participate in the planning of the funeral or other duties related to losing a loved one.
Resources for caregivers and therapists have appeared recently to assist those working with individuals with ID who experience grief. Several books are available, namely When Someone Dies by Hollins, Dowling & Blackman (2003) and People Planning Ahead by the American Association on Intellectual and Developmental Disabilities, to help with the process of understanding and helping someone with ID either the death of a loved one or their own pending death.
Music therapists have been working with individuals with ID for many years to address any number of topics involving behavior management, community participation, the development of musical skills, and physical issues such as range of motion. Hoyle and McKinney (2015) found that fewer studies involved the grief process or bereavement and therefore wanted to “[explore] a series of music therapy sessions to address the issues associated with the bereavement in three adults with intellectual disability (ID)” (p. 39). This study, which is an adaptation of the work of Hilliard (2007), used nine sessions to examine and educate individuals with ID a bereavement process using music therapy protocols. Each session revolved around a different theme to cover topics related to death and bereavement such as education, identifying coping skills, anger, memories of their loved one and how to use the supports they still have to assist with their grief.
Three individuals with ID participated who were currently living in a state supported residential facility. The researchers used a standardized scale to assess the individuals’ negative behaviors. To collect data, the researchers considered each individual as a case study, and shared specific reactions by each person at specified points during the process. The therapists used “songwriting, improvisation, and singing, [and] participants were given the opportunity to express and explore feelings associated with bereavement” (Hoyle and McKinney, 2015, p. 43).
More research is needed to determine exactly how music therapy can play a role in assisting those with ID cope with the loss of a loved one. While this study can in no way show conclusive evidence, the researchers did determine that “music therapy may be a useful intervention for helping bereaved persons with ID express and explore feelings related to significant loss and for teaching effective coping skills that may result in decreased negative behaviors associated with the loss of a significant person in one’s life” (Hoyle and McKinney, 2015, pp. 43-44).
Hoyle, J. N., McKinney, C. H. (2015). Music therapy in the bereavement of adults with intellectual disabilities: A clinical report. Music Therapy Perspectives, 33(1), 2015. 39-44.
Stephanie H. Morris, MM, MT-BC
Neurologic Music Therapist