Service Utilization Patterns in Parents of Youth and Adults With Intellectual Disability Who Experienced Behavioral Crisis

Abstract

Family caregivers play an important role in supporting people with intellectual disability (ID) and mental health problems or serious challenging behaviors across the life span. Relevant services for parents of people with ID may vary depending on the age of the child and the severity of mental health problems. Often, individuals with ID experience behavioral crisis, and the purpose of this study is to understand parents' service utilization patterns. Forty mothers of youth and adults with mild ID shared their experiences of crisis and commented on service needs, receipt, and effectiveness as well as on the barriers to service access using an adapted version of the Need for Help Questionnaire (Douma, Dekker, & Koot, 2006). All parents had high levels of service need. Although most parents noted that they received services, many found that service effectiveness was limited. A greater proportion of parents of youth rated the information and mental health care for their child as effective compared with parents of adults. Barriers to service access for parents of youth centered around perceptions of their child's problem behavior, whereas parents of adults focused on perceptions of the service system. Input from caregivers can help identify deficiencies in the system that lead them to crisis and help tailor services to meet their needs. Research is needed to further elucidate different ways of engaging parents of youth and of adults to help them promote mental health in people with ID and prevent behavioral crises from occurring.

KEYWORDS:

• intellectual disability
• families
• caregivers
• service utilization
• dual diagnosis

ACKNOWLEDGMENTS

This research was funded by a postdoctoral fellowship from the Canadian Institutes for Health Research to Jonathan Weiss. We extend our sincere appreciation to all the families who participated in this research.