Setting priorities for people with intellectual disability/intellectual developmental disorders across the lifespan: a call to action by the World Psychiatric Association.

Ashok Roy,Ken Courtenay,Mahesh Odiyoor,Kerim Munir,Geoff Marston,Suchithra Thirulokachandran,Patricia Walsh,Asit Biswas,Sarah Keane

doi:10.1192/bji.2021.6

Abstract

People with DSM-5 intellectual disability/intellectual developmental disorder (ID/IDD) or ICD-11 disorders of intellectual development (DID) have multiple healthcare needs, but in many countries these needs are neither recognised nor managed effectively. This paper discusses the negative impact that stigma, discrimination and social exclusion have on the identification and care of persons with ID/IDD in low- and middle-income countries (LMICs). It also reviews different models of care for children, adolescents and adults. In discussing some initiatives in LMICs the emphasis is on early diagnosis, with success in providing locally sourced care for affected people and their families. This is where the medical, social and rights-based models of care intersect and is a premise of the person-centred biopsychosocial framework of the World Psychiatric Association's Presidential Action Plan 2020-2023. The plan invites psychiatrists to take a lead in changing the culture of care, as well as medical education, clinical training and research, with a renewed emphasis on workforce integration and service development in terms of community-based rehabilitation strategies.

Highlights

People with DSM-5 intellectual disability/ intellectual developmental disorder (ID/IDD) or ICD-11 disorders of intellectual development (DID) have multiple healthcare needs, but in many countries these needs are neither recognised nor managed effectively
Intellectual disability/intellectual developmental disorders (ID/IDD) in the American Psychiatric Association’s DSM-5 or disorders of intellectual development (DID) in the World Health Organization’s (WHO’s) ICD-11 are currently considered under neurodevelopmental disorders
These international definitions of intellectual disability include the key criteria of significant impairment of intellectual and adaptive functioning arising before adulthood

Summary

SPECIAL PAPER

Setting priorities for people with intellectual disability/intellectual developmental disorders across the lifespan: a call to action by the World Psychiatric Association. In discussing some initiatives in LMICs the emphasis is on early diagnosis, with success in providing locally sourced care for affected people and their families This is where the medical, social and rights-based models of care intersect and is a premise of the person-centred biopsychosocial framework of the World Psychiatric Association’s Presidential Action Plan 2020–2023. Menon et al[11] describe an initiative in India (the National Trust) that is developing group homes, respite services, caregiver training and promotion of community awareness based on a mixture of socioecological models of protective care, under a legal guardianship programme managed by local committees legally empowered to act in the best interests of individuals with ID/IDD Such a guardianship framework can be developed in other LMIC contexts, provision of community care for adults with ID/IDD is a financial challenge but needs to take into account cultural beliefs and values

The WPA Plan

Models of disability

Role of families

Support by psychiatrists and training

Findings

Leadership from the WPA