Integrating End of Life Care into Services for People with an Intellectual Disability

ABSTRACT

End-of-life issues encompass old age, terminal illness, dying, grief, mourning and bereavement. Such issues have broad impact on older adults with intellectual deficits, their families, friends, roommates, and formal caregivers. As increasing numbers of people with a intellectual disability survive into old age, social workers regularly encounter end of life situations among very diverse individuals. Social workers in hospices, hospitals, and home care agencies are also asking how best to support people confronting the deaths of aging parents and family, housemates, friends, and staff, as well as their own terminal illnesses and dying.

The history of care for people with a disability documents their exclusion from supportive rituals and education about the end of life. Although existing systems of care continue to negatively impact people at the end of life, resources designed to assist people have expanded in the last decade. End of life education, grief counseling, bereavement services, support groups, crisis teams, and end of life committees are some of the strategies for providing more responsive end of life care.

Key Words:

• Developmental disability
• mental retardation
• aging
• hospice
• dying
• death
• bereavement
• mourning
• grief