Mick Clifford: Care in the community is a great idea, but what care, and in which community?

Community care offers great services for some of the most vulnerable people in our society, but how far does the care go? And is the community the right one?

A Hiqa report on a community care residence in Monaghan found that ‘residents had been living in their bedrooms, engaging in limited activities’ and that they ‘did not attend school’. Picture: Eamonn Keogh

How much degradation must some of the most vulnerable in society be subject to before there is outrage? The publication last week of a Health Information and Quality Authority (Hiqa) report into a residential centre for people with disabilities was shocking, yet the response was relatively muted. 

An on-the-spot inspection by the standards authority revealed that two residents of school-going age who have profound disabilities had been confined to the first floor of the house for 59 days in the last seven months. The lift in the premises was broken. A third resident was carried downstairs when required, but this wasn’t possible for the other two individuals.

When the inspectors arrived last January the lift had been out of action for 25 days, since December 31, 2022. It is unclear how long this situation may have persisted if the inspection hadn’t occurred. In addition, it was discovered that last summer a similar situation prevailed when the lift was out of action for 34 days. On neither occasion had the incident been reported to Hiqa as required.

“The residents had been living in their bedrooms, engaging in limited activities on the landing area of the first floor, having their meals in the upstairs office area, did not attend school, and one resident missed an appointment as there was no way to get them down the stairs except in an emergency,” the Hiqa report states.

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The setting was a four-bedroom house “in the outskirts of a town in Co Monaghan. The residents receive support on a 24-hour basis and are supported in activities in nearby towns.” 

Hiqa found that the provider of the service “had not learnt from the first incident (of the broken lift last summer) and had not put adequate measures in place to ensure it did not happen again”. 

The provider’s response to the incidents was reactive, and the needs of the residents were overlooked during both occasions.” 

The report went on to state that the provider’s “delayed response to fixing the lift issue was impeding the residents’ rights”. 

Other issues were also highlighted in the report, including fire safety, staff training, and staff levels. In an appendix to the report, the provider, MMC Children’s Services, says that two of the bedrooms on the first floor have been relocated to the ground floor and that staff have received fire safety and evacuation training.

The spectre of two wheelchair-using teenagers with disabilities being confined to an upstairs area for a prolonged period must be highly distressing for any family which includes someone with a disability.

It evokes the old Ireland in which some of the most vulnerable were kept behind high walls in situations that had more the appearance of prisons than care facilities. 

And now this is occurring in what is alleged to be a relatively enlightened era.

A spokesperson for Anne Rabbitte, junior minister for disability, told the Irish Examiner that she “has committed to meeting with the HSE, the provider, and Hiqa to discuss the matter”. That’s what passes for an urgent response to news of the degradation of some of the most vulnerable people in the State’s care.

How could such an outrage be allowed to occur? In recent years, policy in this area has been informed by a strategy of moving people with disabilities from congregated settings into the community. A report in 2011, Time To Move On From Congregated Settings set this out as the best strategy. On the face of it, such an approach is highly progressive.

“Community living offers the prospect of an improved lifestyle and quality of life over institutional care for people with intellectual disabilities,” the report stated. This is undoubtedly true in theory but the practices sometimes differs.

Over the last decades, institutions have been scaling back and closing down as its residents are sent out into the community. But what kind of community? In some parts of the country this has meant that the people concerned have been dispatched to houses that are not necessarily within the community from which they came, or in which their families lived. In some instances, these houses are in rural settings. 

The nature of the dispersal is also such that inspection and monitoring is not easy. 

For instance, the house in Co Monaghan was registered with Hiqa in June 2021 but the inspection in January of this year appears to be the first conducted there.

The closure of the Owenacurra mental health facility in East Cork has also highlighted the problems over what follows when such facilities are closed down. 

Last week, Cianan Brennan reported in the Irish Examiner that a senior committee of the HSE has admitted that the UN convention on disabilities may have been breached by the closure of the Midleton-based facility.

Minutes from the HSE’s safety and quality committee noted that concerns were expressed that some of the residents were being moved to Cork City to “congregated settings that are campus-based, isolated, away from the community”. They further recorded that “some members of the committee expressed dissatisfaction with the need to transfer residents away from the Midleton area contrary to their expressed wishes”.

Progressive policies that promise a more enlightened approach are always welcome. Sometimes, however, the health sector appears to be in a rush to throw out the old without fully ushering in the new in the manner in which it was promised would follow.

The policy to close large congregated settings is a positive one for most residents, although questions do arise as to whether moving those with profound disabilities out of such settings is in their best interests. Beyond that, the detail of the replacement model as it develops, as opposed to the one that was promised, needs proper analysis.

Care in the community is an excellent term, but when the care is substandard and the community is not the one that was envisaged, then those who are among the most vulnerable in our society can be the victims rather than beneficiaries of change.