Demand planning for specialist medical services for adults with intellectual disability in NSW 2003-2043

Abstract

In 2004 the New South Wales government initiated the development of a planning framework for improving health services for people with Intellectual Disability. Prompted by a need for information to justify resource allocation for service development within this framework, this thesis was devised: to establish the prevalence of people who met the criteria for the descriptor of Intellectual Disability in NSW, in 2003; to estimate the numbers of people with Intellectual Disability who accessed specialist health care services during 2003-2013; and to predict the demand for specialist health care for this group of people, to 2043. Beginning in 2008, several retrospective and prospective observational studies were conducted on service data, and on convenience cohort clinical data of approximately 1,000 adults with Intellectual Disability. The results were used in a computational system dynamics model to forecast the relevant population figures and consider ‘what-if’ scenarios for planning purposes. It was concluded, in 2015, that the prevalence of people with Intellectual Disability in NSW was likely to have been 57,000 (0.85% of the population) in 2003, and that it will to rise to at least 135,000 (1.3%) by 2043; that approximately one half of adults with Intellectual Disability will be referred to specialist medical officers at least annually; that the numbers of consultant medical officers in neurology, psychiatry, rehabilitation medicine or other sub-specialties caring for adults with Intellectual Disability, will need to rise from a calculated 14 full time equivalents (FTE) in 2003, to (at least) a predicted 40 FTE in 2043; and that given these relatively small numbers, it is likely that the most efficient model for providing specialist medical care will continue to be one of hub-and-spoke teams (7 suggested for 2043 for NSW) of identified sub-specialist medical officers, registered nurses and allied health professionals working in regions whose boundaries are determined by the varying numbers of adults with Intellectual Disability living in those localities.