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J Intellect Disabil Res. 2017 Oct;61(10):939-956. doi: 10.1111/jir.12349. Epub 2017 Jan 16.

Intellectual disability and patient activation after release from prison: a prospective cohort study.

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Melbourne School of Population and Global Health, The University of Melbourne, Parkville, Australia.
Centre for Health Services Research, School of Population Health, The University of Western Australia, Perth, Australia.
National Drug Research Institute, Curtin University, Perth, Australia.
Queensland Centre for Intellectual and Developmental Disability, Mater Research Institute-UQ, University of Queensland, South Brisbane, Australia.
School of Public Health and Centre for Youth Substance Abuse Research, University of Queensland, Herston, Australia.
Mind Australia, Heidelberg, Australia.
Griffith Criminology Institute and Menzies Health Institute Queensland, Griffith University, Mt Gravatt, Australia.
School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia.
Centre for Adolescent Health, Murdoch Children's Research Institute, Parkville, Australia.



Intellectual disability and patient activation may be important drivers of inequities in health service access and health outcomes for people with intellectual disability transitioning from prison to the community. We assessed the association between intellectual disability and patient activation after prison release and examined whether this association varied, depending on whether intellectual disability was identified prior to prison release.


Overall, 936 prisoners were screened for intellectual disability by using the Hayes Ability Screening Index and completed the Patient Activation Measure (PAM) within 6 weeks of prison release and again at 1, 3 and 6 months post-release. We estimated the association between intellectual disability status and PAM scores by using a multilevel linear model, adjusting for sociodemographic, behavioural, health and criminogenic factors. We used propensity score matching to estimate the impact of being identified with intellectual disability prior to release from prison on the change in mean PAM score after prison release.


Compared with those who screened negative for intellectual disability, ex-prisoners who screened positive, both with and without prior identification of intellectual disability, had significantly decreased mean PAM scores [(B = -4.3; 95% CI: -6.3, -2.4) and (B = -4.5; 95% CI: -6.8, -2.3), respectively] over 6 months of follow-up. Among those who reported being identified with intellectual disability prior to release from prison, a significant increase in PAM score at the 6-month follow-up interview (B = 5.89; 95% CI: 2.35, 9.42; P = 0.001) was attributable to being identified with intellectual disability prior to release.


Ex-prisoners screening positive for possible intellectual disability have decreased patient activation for at least 6 months after release from prison. However, individuals whose possible intellectual disability is unidentified appear to be particularly vulnerable. Incarceration is a pivotal opportunity for the identification of intellectual disability and for initiating transitional linkages to health and intellectual disability-specific community services for this marginalised population.


intellectual disability; patient activation; prisoners; prospective studies

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