ALL INSTITUTIONS for people with intellectual disabilities should be closed down within the next seven years because they are in breach of residents’ basic rights.
That is the main conclusion of an unpublished report by the working group established by the Health Service Executive (HSE) to examine conditions in “congregated settings”, or institutions with 10 residents or more.
The 72 institutions, which cost the State just under €500 million each year, accommodate some 4,000 people. Most are run by voluntary organisations and religious groups. The report recommends replacing them with supported or independent placements in the community.
The report, which is expected to be published in the coming months, found major variations in the cost of care across the congregated settings it surveyed. The average cost per resident was €115,000 a year, while costs ranged between €46,000 and €385,500 per resident in different units.
Time to Move on from Congregated Settings: A Strategy for Inclusionsays thousands of people in congregated settings are separated from the community and stripped of dignity, privacy and independence.
The continued operation of these institutions is in breach of Ireland’s obligations under various United Nations conventions and also contradicts official Government policies, it says. More than half of residents have severe or profound intellectual disabilities and been living in congregated settings for decades. Just over a third had no contact from family or friends for a year or more.
The model of service is highly medical – almost 40 per cent of staff are nurses – while many do not have access to basic therapies or activities. Just over a quarter of residents had no day programme (444 people) or a very limited day programme in their wards (688).
In general, it found that managers and frontline staff are struggling to provide basic services such as bathing, toileting and dental hygiene. People are still being changed or washed in communal areas.
One project manager noted it had “20 older people with severe disability with one accessible shower and two wash basins. People wait their turn to be washed and cleaned”.
The report proposes a new model of supported or assisted living in the community which would allow people with disabilities make their own life choices. Residents should also have access to specialised services based on individual assessments, as well as access to mainstream health and social services.
The cost of running community-based services would be similar to running institutions that cost €460 million in 2008, or 40 per cent of the entire disability budget.
The report suggests establishing five to seven “demonstration sites” to explore efficient and sustainable ways of delivering this new model. While economic conditions are challenging, community-based services are no more expensive to run than institutions. It says disability budgets have been cut by 5 per cent between 2008 and 2010, resulting in less flexibility within budgets to fund further movement to the community. Revenue from the sale of existing institutions would help fund the move towards community-based care.
It emphasises that the process of closing down institutions will not simply be a case of replacing one set of buildings for another. Successful services will need to be carefully planned and supports – such as advocacy, person-centred planning, support for community inclusion, further education support – will be vital.
The report recommends that no new congregated settings be built and that admissions to institutions should cease immediately.
It proposes a senior HSE official should be charged with driving and implementing a seven-year programme to close down inappropriate settings, while a “congregated settings fund” should be established to help the transition to a new model.