Many people with disabilities who live in congregated settings have a poor quality of life and experience a poor quality of service, the Health Information and Quality Authority (HIQA) has said.

HIQA is responsible for the regulation of designated residential centres for people with disabilities in Ireland. It has just published a report focusing on its work with these services in 2019.

By the end of last year, there were 1,268 registered designated centres for people with disabilities in Ireland, providing places for 9,064 residents. During the year, HIQA carried out 1,016 inspections, speaking to many residents and their families.

According to the report, inspectors found that the majority of centres provided a good quality of care and support to residents. Increased compliance in key areas, such as protection and social care, across centres since 2018 was also noted.

However, many residents living in congregated settings were found to experience a poor quality of service and had a poor quality of life.

The report noted that throughout 2019, HIQA found that residents who had more freedom in exercising their human rights lived in centres with higher levels of compliance with the regulations, and higher compliance tended to be found more often in non-congregated settings.

"For example, residents who had moved from congregated settings to the community told inspectors about their new way of life and new levels of freedom.

"Echoing these sentiments from residents, inspections found that centres in the community had higher levels of regulatory compliance than those in congregated settings. Overall, non-compliance levels in congregated settings were over twice that of non-congregated centres (centres in the community) during inspections in 2019," the report stated.

During inspections, most residents said that they were happy in their homes and they felt safe, and most felt they had choice and control over their daily activities and were well supported by staff.

"However, in some congregated settings, the residents' day was primarily focused on campus-based activities. These activities were often further limited by staff shortages.

"For example, inspectors saw situations where external activities had to be delayed or cancelled because transport had to be shared between a large number of residents," the report said.

It noted that a number of residents living in congregated settings expressed their frustration to inspectors about the length of time being taken for them to move to community-based services.

"Worryingly, some residents said that they had stopped engaging in advocacy meetings to support their plans to transition to the community, as they felt progress was not being made," the report said.

Meanwhile, many residents living in the community said that they had developed independent living skills, or enjoyed being supported to engage in tasks in their homes, such as cooking, cleaning and laundry tasks.

Some assisted staff with planning and helped, for example, with the weekly food shopping.

"This resulted in residents having a sense of ownership and control in their own home and of being active participants in the day-to-day operations of their home.

"This was in contrast with many congregated settings, where inspectors found that residents were not actively being supported to engage in the running of their own home or developing independent living skills, such as doing their own laundry or preparing their own meals," the report noted.

It said that this was primarily due to the design of the buildings where they lived, which tended to have centralised kitchen and laundry facilities.

Some residents also expressed dissatisfaction with the size of their bedrooms and in some centres, particularly in congregated settings, some residents did not have their own bedrooms.

"Some said they would prefer their own rooms. Other residents told inspectors that they did not like living with the people in their home and in some cases, were afraid or felt uncomfortable or unsafe in their home," the report stated.

Commenting about the report, HIQA's deputy chief inspector of social services (disability), Finbarr Colfer, pointed out that one in three residents continue to live in large institutions or campuses and are at greater risk of having a poor quality of life compared to residents who live in community settings.

"Residents in congregated settings were often separated from their local communities and continued to live in unsuitable, outdated accommodation. Important aspects of everyday life and person-centred care, such as the privacy of your own room, being able to have local friends, and having access to your own kitchen or laundry facilities, are often compromised or unavailable to these residents," he said.

According to HIQA's chief inspector of social services and director of regulation, Mary Dunnion, while regulation has made a significant contribution to improving the lives, experiences and human rights of people living in these centres over the past six years, "further work remains to be done".

"Regulations are the basic minimum standard of care that should be provided to people, and it is disheartening to continue to find people with disabilities living in designated centres who could not fully exercise their basic human rights.

"While primary responsibility for providing a safe and a good quality service to people with disabilities rests with the service providers, it is also imperative that the funders of these services ensure that public finances are being used to deliver a good quality and safe service," she insisted.

HIQA added that the COVID-19 pandemic has presented major challenges to these residential centres, but it said that it is "committed to continuing to work with providers during these challenging times to ensure that the rights of residents are promoted and protected".

The report on the inspection of disability services in 2019 can be viewed here.