Experiences with the mental health service system of family caregivers of individuals with an intellectual/developmental disability referred to START

Calliope Holingue, Luther G. Kalb, Ann Klein, Joan B. Beasley

Research output: Contribution to journalArticlepeer-review

Abstract

People with intellectual and developmental disabilities (IDD) frequently have behavioral or mental health needs, but experience obstacles to treatment. Family caregivers are often responsible for coordinating the care of individuals with IDD. This study examined family caregiver experiences using intake data from a national tertiary crisis intervention model designed for people with IDD and mental health needs. Caregivers (n ¼ 488) completed the Family Experiences Interview Schedule. Less than half of families reported satisfaction with the mental health services received. Notable gaps were in crisis, night and weekend services, choice of services and providers, communication and coordination between providers, and specialized training. Experiences were worse for caregiving fathers and individuals with IDD with co-occurring chronic medical conditions.

Original languageEnglish (US)
Pages (from-to)379-392
Number of pages14
JournalIntellectual and Developmental Disabilities
Volume58
Issue number5
DOIs
StatePublished - Oct 8 2020

Keywords

  • Family caregiving
  • Intellectual disability
  • Mental health services
  • START

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Education
  • Developmental and Educational Psychology
  • Community and Home Care
  • Psychiatry and Mental health

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