Maureen O'Sullivan (Dublin Central, Independent) | Oireachtas source

I will not need a whole five minutes.

We have heard some really horrific stories and accounts of how people with disabilities, especially those with intellectual disabilities, have been treated in this country. We ally that with the stories of parents of children with disabilities and intellectual disabilities. I know the Minister of State, Deputy Finian McGrath, is one of those who has had to fight every step of the way to ensure their children will have the same rights and access as children who do not have a disability. I thought the stories from those in the industrial schools and the ladies in the Magdalen laundries were the worst we would hear about how we treat vulnerable people. However, we are hearing more heartbreaking, devastating and disturbing stories of what has been happening to those with an intellectual disability. Even more heartbreaking is that we know it continues today. However, I acknowledge those organisations, homes, front-line staff and intellectual disability nurses who have been instrumental in the giving of high-quality care. It is unfortunate that their positive work is being taken from by those who have abused their position.

It is vital that the registration process has an opportunity to be completed, but registration in itself is pointless unless there is follow-up. It is disappointing that the registration was not completed within the timeframe, which now needs to be extended by two years. HIQA mentioned various complexities with regard to quality and safety issues and the consequences if the deadline was not extended for the HSE. It stated that it would have to make alternative arrangements for the residents and that that would have major implications for them. We are speaking about vulnerable people in settings that are their homes. They have become used to these facilities and have visits from their families there, and those family members are satisfied with the standards. When people become settled and used to a routine, it can be difficult for them to handle change. I therefore support the provision of this extension, but it is disappointing that it is required. In the meantime, it is important to have a mechanism to address issues in unregistered homes. I know the Minister of State has made a commitment in this regard. However, we do not want to be hearing these stories for the first time in the media. We need to be more proactive so that the Government and the authorities know about them first.

The review by the National Disability Authority refers to the demands on service providers when applying for formal recognition. It mentions the time commitment involved in the paperwork. That is replicated in many voluntary organisations, which find it onerous, particularly voluntary management boards. I accept the need for regulation but I do not believe good paperwork necessarily equates to high-quality care. I have been involved in voluntary work for quite a long time and I know that organisations are overwhelmed by the extent of the bureaucracy and paperwork required. It is almost as if there is an agenda to try to remove as much of the voluntary effort as possible, something which would be very disappointing.

With regard to congregated facilities, the HIQA report notes that 70% of residents with a disability in designated centres are living in congregations of ten or more residents. They are the ones that are more likely to be non-compliant when the inspections take place, rather than the smaller residential institutions. We know that a smaller setting is better but we must be cognisant of the existence of centres with ten or more residents that have worked well and in which the residents are happy. The relationship between the staff and the resident, the standards in the home and the programmes available for people with intellectual disabilities are the most important aspects when looking at inspections of these homes.

Regrettably, after a certain age people with intellectual disabilities can be left with nothing to do and nothing to stimulate them day by day. Various organisations have referred to the challenges for the disability sector, such as those around registration and inspection, but there are challenges for those who work with people with an intellectual disability too. I deal quite a bit with people with an intellectual disability and I know how time-consuming and challenging it is. The voice of those with a disability should be part of all the processes.

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