Congregated Settings

A congregated setting is where 10 or more people with a disability are housed in a single living unit or placed in accommodation that is campus or institution based. Today between 2000 and 3000 people with disabilities in Ireland live in congregated settings. For over 90% intellectual disability is their main disability.¹

What do we know about congregated settings?

“A Time to Move on from Congregated Settings” is a report published by the Health Service Executive in 2011. At that time, the HSE found that over 3000 people with disability were living in congregated settings, living isolated lives, segregated from the community and family; many experienced institutional living conditions where they lack basic privacy and dignity. While costs varied from centre to centre, the average annual payment per person by the Health Service Executive was €106,000.¹ The report proposed a new model of accommodation and support in the community.

What is the alternative?

All housing arrangements for people moving from congregated settings should be in ordinary neighbourhoods (dispersed housing) in the community, with individualised supports (supported living) to enable each person to live in the home of their choice and be included in the community. A person moving from a congregated setting or any person with disability may:

Choose to live on their own
Share with others who do not have a disability
Share their home with other people with a disability (to a maximum of four people with a disability and each should have chosen to live with the other 3 people)
Live with their own family or opt for long‐term placement with another family.
There should be no new admissions to congregated settings.

Inclusion in the community means a high level of engagement with the local community and wider society. It means opportunity to explore individual interests and choices rather than being confined to a set range of centre based and group activities. Inclusion also means access to meaningful employment and valued roles in the community.

Does community living cost more?

Community living is no more expensive than institutional care once the comparison is made based on comparable needs and comparable quality of care. Repeatedly studies show that community services are better than institutions.

Progress since 2011

In 2011 a seven-year timeframe was planned for the full implementation of the report’s recommendations. In 2018 the HSE reported that 165 people transitioned to living in the community and there were 2136 people who remained resident in a congregated setting².

Based on inspection of designated centres for people with disability, HIQA reported that 2914 people were resident in congregated settings at the end of 2019⁴.

Challenges

There is a risk that institutional practises can migrate to community settings³; it is not just a case of replacing one set of buildings with another. Successful community living requires close attention to the way services are set up and run, especially the quality of support staff.

Community based support services must be in place, carefully planned around the needs and wishes of individual people and then continually monitored. Successful community living involves a network of local community contacts, supporters, friends, and advocates.

Responsibility for housing rests with housing authorities while the health services should provide for the health and social personal needs of people with disabilities living in the community. Choice of accommodation should not determine what services are provided and equally choice of service providers should not affect the choice of accommodation or the ability to remain in accommodation chosen.

1. Time to Move on from Congregated Settings. Report of the Working Group on Congregated Settings. HSE 2011. 2. https://www.hse.ie/eng/services/list/4/disability/congregatedsettings/time-to-move-on-newsletter-january-2020.pdf 3. Tatlow-Golden, M., Linehan, C., O’Doherty, S., Craig, S., Kerr, M., Lynch, C., McConkey, R., & Staines, A. (2014). Living Arrangement Options for People with Intellectual Disability: A Scoping Review. Dublin: School of Social Work and Social Policy, Trinity College Dublin. 4. HIQA News, Issue 35 February 2020.