Music Therapy in the Bereavement of Adults with Intellectual Disabilities: A Clinical Report

Abstract

According to the American Association on Intellectual and Developmental Disabilities, intellectual disability (ID) is defined as disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18 (American Association on Intellectual and Development Disabilities, 2012). Due to changes in healthcare in the past 40-70 years, life expectancy has increased for almost all people, including persons with intellectual disabilities. Deinstitutionalization and the civil rights movement of the 1960s and 1970s led to better treatment of persons with ID; less restrictive environments and inclusion in school, work, and living arrangements; and protection from harm that often occurred in large institutions (Doka & Lavin, 2003; World Health Organization, 2000). In 1930, the life expectancy of persons with ID was 18.5 years, and the expected age has increased by over 350% since that time (McCallion & Nickle, 2008). The longer people live, the more opportunities they have to form meaningful relationships and, in turn, experience significant losses.Grief, Loss, and Adults with Intellectual DisabilitiesThe experience of loss is often associated with, but not limited to, the death of a loved one. Treatment of individuals with ID experiencing bereavement may include counseling, changes in environment, and social work techniques (Dowling, Hubert, White, & Hollins, 2006; LoConto & JonesPruett, 2008; Stoddart, Burke, & Temple, 2002; Summers & Witts, 2003). For nearly all people, the experience of a significant loss creates feelings of sadness, grief, and guilt and may seem devastating and unbearable. Although persons with ID experience grief, they may grieve in atypical ways and have difficulty expressing their feelings due to communication impairments. Persons with ID are often well aware of the loss and can experience grief to the same extent as someone without ID, but may not be able to communicate that experience in the same way as the typically developed adult (Kauffman, 1994). This difficulty in communication may contribute to negative behaviors and subsequent frustration for, or misdiagnosis by, caregivers and therapists (Clements, Focht-New, & Faulkner, 2004; MacHale & Carey, 2002). Moreover, persons with ID have limited close relationships and thus fewer identities on which to rely when one of those relationships is ended (LoConto & Jones-Pruett, 2008).In the event of a death, the person with ID may be given incorrect information and/or may not be involved in the funeral process. The explanations for why people leave are often minimized or misrepresented to the person with ID for fear the person with ID would not understand the situation (Clements, Focht-New, & Faulkner, 2004) or because people are often hesitant to give people with ID information that might upset them (Brickell & Munir, 2008, p. 6). This may lead to ineffective or delayed grieving (Clements, Focht-New, & Faulkner, 2004). Clements, Focht-New, and Faulkner suggested that persons with ID may benefit from straightforward explanations when experiencing loss. Persons with ID are sometimes excluded from bereavement rituals due to concerns that they will behave inappropriately, display too much emotion, or interfere with the rituals. A study of funeral directors revealed a lack of knowledge and experience of inclusion of persons with ID in funeral rituals (Raji, Hollins, & Drennan, 2003).Treatment of Bereaved Individuals with Intellectual DisabilitiesResearchers and clinicians have recently begun to explore and understand the implications of grief and bereavement on individuals with ID (Dowling, Hubert, White, & Hollins, 2006; LoConto & jones-Pruett, 2008; Stoddart, Burke, & Temple, 2002; Summers & Witts, 2003). …