Lack of pace in move away from larger centres - HIQA

The pace at which people with disabilities move from larger settings to community housing has stalled in recent years, according to the Health Information and Quality Authority (HIQA).

The independent watchdog has published a ten-year overview report (2013-2023) on the regulation of residential disability services for over 9,000 people.

Almost 25% of people with disabilities living in designated centres were still living in congregated settings, according to the report.

While it is national policy to decongregate, there is no legal requirement to do so.

However, it has warned that there is no room for complacency.

Regulation commenced following findings of unsafe and institutional practices, insufficient staffing arrangements and unfit premises in 2013.

The lingering effects of the financial crisis in Ireland meant that very little funding was available for investment in services in the early years of regulation.

Many residents were living in outdated and poorly maintained buildings that were institutional in nature, while the culture in some services was paternalistic and the care regimented.

Many services were not promoting person-centred care.

While much progress had been made in improving the quality in services and outcomes for residents according to HIQA, there were "significant challenges facing the sector now and into the future".

The report pointed to the recruitment and retention of staff as "an ever-present challenge" and a barrier to the adequate resourcing of services.

It also noted the difficulty of sourcing accommodation for new centres - due to the wider housing crisis - as a significant barrier for providers.

Tied to this was the level of funding available to acquire new premises and staff them according to residents' assessed needs.

"There is also a reluctance on the part of some providers to decongregate due to the complexity of care required by some residents," HIQA said.

In the report, the regulator acknowledged that the transfer of the disability function from the Department of Health to the Department of Children, Equality, Disability, Integration and Youth offered "a new focus" on supports and services as outlined in the three-year Disability Action Plan which was published by the Government this year.

However, HIQA warned of gaps in the legislation - such as the need to make provision for situations where providers need to accommodate people with disabilities in an emergency.

It said there was a need for regulatory reform, to update the regulations to reflect current circumstances - such as the ratification of the United Nations Convention on the Rights of Persons with Disabilities - to strengthen the human rights-based approach within the regulations.

The Assisted Decision Making (Capacity) Act 2015, provided "a robust legal framework for people with disabilities that need support with making decisions", HIQA said, adding that "it is essential that residents can avail of such services so that they may protect and promote their own human rights."

Despite problems outlined in the report, HIQA said there were "countless examples" of lives that have been transformed for people who have moved from institutional settings.

Between 2013 and 2023, 9,400 inspections of services were conducted and over 1,500 centres for over 9,000 people have been registered.

The registration of 15 designated centres, where there were significant concerns, were cancelled.

At the end of 2023, there were 1,574 centres offering 9,147 places for people with disabilities according to the report.