Trans-institutionalisation in Ireland: New and Emerging Congregated Settings for People with Disabilities

Gautam Gulati, Alan Cusack, Brendan D. Kelly, Valerie E. Murphy, Shane Kilcommins, and Colum P. Dunne

The use of congregated settings to accommodate people with disabilities in Ireland may be in breach of the UN Convention on the Rights of Persons with Disabilities (CRPD). The report of the Health Service Executive (Ireland’s public health provider) working group on congregated settings in 2011 called for immediate action to provide community support for people with disabilities. It highlighted the urgent need for community housing for the 4000 individuals with intellectual, physical, or sensory disabilities who were living in congregated settings. According to official data, there was a 30% reduction in the number of residents in congregated settings between 2012 and 2017.[1]

However, a 2018 analysis by Inclusion Ireland (Ireland’s representative organisation for people with intellectual disabilities) raised concerns that the 2011 report did not result in adequate policy or practice responses.[2] Inclusion Ireland found that people with disabilities were being moved between institutions rather than moving into community settings, “…in 2015, less than 10% moved into their own home. Almost three quarters of those who moved, moved to other institutions…”.[3] This is evidence of trans-institutionalisation whereby individuals with disabilities are remanded in diverse institutional sites rather than living independently in community settings.

Ahead of its first reporting cycle to the CRPD Committee in 2021, Irish policymakers need to recognise and address a culture of trans-institutionalisation for people with psychosocial and intellectual disabilities. The institutions include prisons, hostels for homeless people, and direct provision centres for asylum seekers which risk emerging as new congregated settings for people with disabilities.

People in prisons

A study of the period 1986 to 2010, during which time the number of psychiatric beds in Ireland decreased, found an inverse relationship between psychiatric admissions and prison committals.[4] It identified an “increase of 91 prison committals for every 100 psychiatric hospital admissions foregone”.

Current data, although incomplete, suggest that nearly one in three prisoners have intellectual disabilities, one in two have substance misuse/dependence and that the prevalence of people with severe mental illness is four times that of the general population.[5] Furthermore, providing equivalent care for these people as set out in the UN Nelson Mandela rules is challenging with systemic and legal barriers to diversion in Ireland.[6]

Irish prisons are, in effect, emerging as congregated settings for people with psychosocial and intellectual disabilities, particularly since the closure of large psychiatric hospitals.

People who are homeless

A recent study in Dublin of people with intellectual disabilities found 145 individuals/families identified as homeless or at risk of homelessness.[7] The authors highlighted that social factors, especially around social connectedness, stigma, and social exclusion played an important role in homelessness in respect of people with intellectual and developmental disabilities.

Over-representation of persons with intellectual disabilities amongst the homeless population was also revealed in an Inclusion Ireland report which, in using 2016 census statistics, found that while people with an intellectual disability represent 1.4% of the total Irish population, they represent 3.1% of the Irish homeless population.[8] Significantly, the link with homelessness extends to people with psychosocial disabilities. A recent study in acute psychiatric inpatient units in one Irish region found that nearly one in three inpatients was homeless or had a history of homelessness.[9] Furthermore, those who were homeless were more likely to have been admitted involuntarily.

More than one in six people committed to Irish prisons are homeless at the time of committal and there is a proven link between disability, incarceration, and homelessness.[10] A Dublin based study found a high prevalence of mental illness in people in a hostel for homeless people.[11]

Hostels for people who are homeless are, in effect, emerging as congregated settings for people with psychosocial and/or intellectual disabilities.

People seeking asylum

The burden of mental illness experienced by asylum seekers is known to be substantial and the number of applications for asylum status in Ireland is significant.[12] While their applications are being processed, asylum seekers are required to live in direct provision centres which resemble shared hostels. A study of two of these centres found that found that asylum seekers were six times more likely than refugees to report symptoms of post-traumatic stress disorder, depression, or anxiety.[13] Research in primary care settings found that asylum seekers were five times more likely to be diagnosed with psychiatric illness than Irish citizens, yet there remains a paucity of services for asylum seekers with psychosocial disabilities.[14]

Little is known about the prevalence of people with intellectual disabilities in the direct provision system but there is international recognition of the additional barriers people with intellectual disabilities face in the asylum process.[15]

With over 7000 people living in direct provision in Ireland (30% of whom are children) with an average stay of 24 months, the government white paper on ending direct provision is forward looking and timely.[16] It is important that people with intellectual and psychosocial disabilities are appropriately supported through this process to avoid trans-institutionalisation.

Preventing trans-institutionalisation

Decongregation of those with disabilities from institutions is essential if Ireland is to meet the human rights standards prescribed by CRPD. However, this cultural shift must be accompanied with community support and inclusion strategies to avoid trans-institutionalisation.

A first priority is to identify people with disabilities. This is best done at the first encounter with the system, for example, reception into the asylum process or homeless hostels. In the criminal justice pathway this is best done at the arrest and police custody stage and has implications for the training of police officers.[17] Indeed, the latter has been identified as a key state obligation under Article 13(2) of CRPD. Without recognition, it is impossible to provide the support which is necessary to ensure that the human rights of these individuals are meaningfully realised.

State bodies additionally need to prioritise a “joined up thinking” approach to inclusion for people with disabilities at government inter-departmental level. Any outcomes from decongregation policies must include data on trans-institutionalisation, particularly in respect of new and emerging congregated settings.

Persons with disabilities have the right to live in the community, with equal choices, and full inclusion and participation. Decongregation cannot be considered successful when accompanied by trans-institutionalisation.

Acknowledgment

An early version of this paper was presented to the Joint Committee for Disability Ireland in July 2021.

Gautam Gulati, MD, is Adjunct Associate Clinical Professor at the School of Medicine, University of Limerick, Limerick, Ireland. Email: ulmlrc@gmail.com

Alan Cusack, PhD, is Lecturer in Law at the School of Law, University of Limerick, Limerick, Ireland.

Brendan D. Kelly, PhD, is Professor of Psychiatry at the Department of Psychiatry, Trinity College, Dublin, Ireland.

Valerie E. Murphy, PhD, is Clinical Senior Lecturer at the Department of Psychiatry, University College, Cork, Ireland.

Shane Kilcommins, PhD, is Professor of Law at the School of Law, University of Limerick, Limerick, Ireland

Colum P. Dunne, PhD, is Foundation Professor and Director of Research at the School of Medicine, University of Limerick, Limerick, Ireland.

References

  1. Health Service Executive, “Report of the Working Group on Congregated settings”, 2011. Available at: https://www.hse.ie/eng/services/list/4/disability/congregatedsettings/time-to-move-on-from-congregated-settings-–-a-strategy-for-community-inclusion.pdf and “Review of Policy Implementation, 2012-17” available at https://www.hse.ie/eng/services/publications/disability/review-of-time-to-move-on-policy-implementation-2012-2017.pdf
  2. Inclusion Ireland. “Deinstitutionalisation in Ireland; a failure to act”, February, 2018. Available at: https://inclusionireland.ie/wp-content/uploads/2020/09/deinstitutionalisation-ireland-failure-act.pdf
  3. Ibid.
  4. S. Kilcommins, I. O’Donnell, E. O’Sullivan, and B. Vaughan (2004) “Crime, Punishment and the Search for Order in Ireland” (2004), Dublin: IPA, pp. 232-237; C. O’Neill, B. Kelly & H. Kennedy, “A 25-year dynamic ecological analysis of psychiatric hospital admissions and prison committals: Penrose’s hypothesis updated. Irish Journal of Psychological Medicine” (2018), pp. 1-4.
  5. G. Gulati, N. Keating, A. O’Neill, I. Delaunois, D. Meagher, and C. P. Dunne, “The prevalence of major mental illness, substance misuse and homelessness in Irish prisoners: systematic review and meta-analyses”, Irish ournal of Psychological Medicine, 36/1 (2019), pp. 35–45; G. Gulati, V. Murphy, A. Clarke, K. Delcellier, D. Meagher, H. Kennedy, E. Fistein, J. Bogue, and C. P. Dunne, “Intellectual disability in Irish prisoners: systematic review of prevalence” International Journal of Prisoner Health, 14/3 (2018), pp. 188–196.
  6. United Nations Office on Drugs and Crime. “The United Nations Standard Minimum Rules for the Treatment of Prisoners (the Nelson Mandela Rules)”, 2015. Available at https://www.unodc.org/documents/justice-and-prison-reform/Nelson_Mandela_Rules-E-ebook.pdf; Gulati & B.D. Kelly, “Diversion of Mentally Ill Offenders from the Criminal Justice System in Ireland: Comparison with England and Wales” Irish Medical Journal 111/3 (2018), 719; G. Gulati, A. Cusack, J. Bogue, A. O’Connor, V. Murphy, D. Whelan, W. Cullen, C. McGovern, B.D. Kelly, E. Fistein, S. Kilcommins & C.P. Dunne, “Challenges for people with intellectual disabilities in law enforcement interactions in Ireland; thematic analysis informed by 1537 person-years’ experience”. International Journal of Law and Psychiatry, 75 (2021), 101683.
  7. M. O’Donovan, E. Lynch, L. O’Donnell & K. Kelly, “The experience and risk of homelessness for people with intellectual disabilities and/or autism and their families in Dublin. A mixed methods study”, Trinity Centre for Aging and Intellectual Disability (2020).
  8. Inclusion Ireland, “Housing for people with intellectual disabilities; The lack of supports for independent living”, November 2019. Available at https://inclusionireland.ie/wp-content/uploads/2020/11/housing-position-report.pdf
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  10. G. Gulati, N. Keating, A. O’Neill, I. Delaunois, D. Meagher & C.P. Dunne, “The prevalence of major mental illness, substance misuse and homelessness in Irish prisoners: systematic review and meta-analyses”, Irish Journal of Psychological Medicine, 36/1 (2019), pp. 35–45; A. Y. Bashir, N. Moloney, M. E. Elzain, I. Delaunois, A. Sheikhi, P. O’Donnell, C.P. Dunne, B. D. Kelly, and G. Gulati, “From nowhere to nowhere. Homelessness and incarceration: a systematic review and meta-analysis”, International Journal of Prisoner Health, ahead-of-print(ahead-of-print), 10.1108/IJPH-01-2021-0010.
  11. B. Prinsloo, C. Parr, and J. Fenton, “Mental illness among the homeless: Prevalence study in a Dublin homeless hostel”, Irish Journal of Psychological Medicine, 29/1 (2012), pp. 22-26.
  12. College of Psychiatrists of Ireland, “The Mental Health Service Requirements in Ireland for Asylum Seekers, Refugees and Migrants from Conflict Zones”, (2017). Available at: https://www.irishpsychiatry.ie/wp-content/uploads/2016/10/Mental-Health-Service-requirements-for-aslum-seekers-refugees-and-immigrants-150517-1.pdf
  13. M. Toar, K.K. O’Brien & T. Fahey, “Comparison of self-reported health & healthcare utilisation between asylum seekers and refugees: an observational study”, BMC Public Health 9, 214 (2009).
  14. See note 12; J. D. McMahon, A. Macfarlane, G. E. Avalos, P. Cantillon, and A. W. Murphy, “A survey of asylum seekers’ general practice service utilisation and morbidity patterns”, Irish Medical Journal, 100/5 (2007), pp. 461–464.
  15. A. Luce, “Asylum Seekers and Refugees with Intellectual Disabilities in Europe”, (2018). Available at: https://www.socialconnectedness.org/wp-content/uploads/2019/10/Asylum-Seekers-and-Refugees-with-Intellectual-Disabilities-in-Europe-1-1.pdf
  16. DORAS, Direct Provision Statistics (2021). http://doras.org/direct-provision/ ; Government of Ireland, “White Paper on Ending Direct Provision”, 2021. Available at: https://www.gov.ie/en/publication/7aad0-minister-ogorman-publishes-the-white-paper-on-ending-direct-provision/#
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