Barriers to Mental Health Care Transition for Youth and Young Adults with Intellectual and Developmental Disabilities and Co-occurring Mental Health Conditions: Stakeholders' Perspectives

Community Ment Health J. 2024 Aug;60(6):1104-1116. doi: 10.1007/s10597-024-01262-x. Epub 2024 Apr 15.

Abstract

Youth and young adults (YYA) with intellectual and developmental disabilities (IDD) have high rates of co-occurring mental health (MH) conditions. The time during transition from pediatric to adult health and mental health care can be a very challenging, with risk of loss of services leading to poor outcomes. This study aimed to explore barriers to transition from pediatric to adult health and mental health care and services for individuals with IDD and co-occurring MH conditions, by eliciting the view of stakeholders, including disability advocates. Qualitative analysis was conducted using grounded theory, and themes were coded based upon the social-ecological model (SEM). We generated themes into multiple levels: the individual level, the family level, the provider level, the systems of care level, and the societal level. Stakeholders expressed a critical need to improve coordination between systems, and to increase provider availability to care for YYA with IDD and co-occurring MH conditions.

Keywords: Barriers to care; Intellectual and developmental disabilities; Mental health care; Transition.

MeSH terms

  • Adolescent
  • Adult
  • Developmental Disabilities* / psychology
  • Developmental Disabilities* / therapy
  • Female
  • Health Services Accessibility*
  • Humans
  • Intellectual Disability* / psychology
  • Intellectual Disability* / therapy
  • Male
  • Mental Disorders* / psychology
  • Mental Disorders* / therapy
  • Mental Health Services*
  • Qualitative Research*
  • Stakeholder Participation / psychology
  • Transition to Adult Care*
  • Young Adult