Debate contribution: Respite Provision for Adults with Learning Difficulties, Complex Needs and Challenging Behaviour

Debate contribution by Mr Colm Gildernew on 21 October 2024.

MLA

Mr Colm Gildernew

Party at the time

Sinn Féin

Date

21 October 2024

Type

Debate contribution

Business

Private Members' Business

Heading

Respite Provision for Adults with Learning Difficulties, Complex Needs and Challenging Behaviour

Assembly identifier

Official Report component 4604334

Read the official Assembly record

Text

Go raibh maith agat, a Leas-Cheann Comhairle.

I thank all Members who contributed to this afternoon's debate on a hugely important issue. The debate covered very many of the issues that I have heard as an MLA and, previously, as a carers' spokesperson over the years. We support both amendments, and I thank the parties and Members who tabled them. Caring for a family member is one of the most difficult jobs that anyone can do. The lack of support or recognition often adds significantly to the challenges that carers face. Carers often talk about planning for respite as being almost like a military operation. They will talk about being in the trenches and fighting for every bit of support that they get. That language indicates the level of stress that they are under repeatedly. It is worth briefly mentioning that the single allowance that is paid to carers, the carer's allowance, is woefully inadequate to meet their needs. That is worth mentioning in the debate as well. Respite services are a vital element for individuals who receive care and the person who provides that care for them. We should remember that many of our carers experience significant health difficulties themselves. They have to try to navigate that at the same time as looking after someone who may have particular vulnerabilities. Respite services provide those carers with some space — it is only some space — to complete day-to-day tasks that we all take for granted, be it shopping for groceries, attending their own appointments or, potentially, as was mentioned, looking after another person. The example of Woodlawn House in my constituency was mentioned a couple of times by Members and, indeed, the Minister. It is an eight-bed facility that provides short breaks of around a week for those with learning disabilities, complex needs and challenging behaviour. In December last year, respite services were severely impacted on by the need to redirect staff to intensive individual support, which was clearly needed at that time. It was the second time that that had happened in Woodlawn House within a short number of years. In that instance, service users and their families who were due to avail themselves of the service were told at short notice that all their respite slots had been cancelled. Hearing that causes massive distress and frustration and adds to the feeling of burnout, which Deborah referenced, and the sense of despair. It underlines the inadequate provision that exists for adults and children with complex needs and challenging behaviour and shows the need for more investment. We absolutely need to plan better to address those needs, provide planned support for all our families and ensure that a crisis of that nature does not have that impact on so many families who are so close to the end of their tether. More and more children with learning disabilities and complex needs are leaving services at 18 years old. The Minister referenced that fact and the need to do better at transition. Those children then enter adult services, which are already under pressure, and that means that more and more respite centres will inevitably struggle to meet the increased level of demand. I will touch on some Members' contributions, because it is useful to cover some of the very many aspects of the issue. Paul Frew mentioned the movers of the motion and the amendments, so I will start by mentioning some of the other contributors. Nuala McAllister referenced the fact that staff are doing a fantastic job despite all the pressures. That absolutely needs to be acknowledged. She also referenced the need for forward planning, particularly for transition, as the Minister mentioned, and the very important issue of safe staffing legislation, which we are yet to see. Those are important issues. Deborah mentioned the fact that parents are barely coping at times and the important issue of carer burnout. Kellie Armstrong gave us some real-life examples and illustrated the issues in a way that brought them right home to all of us. She made the important point that, at times, carers feel completely forgotten. We in the House should not allow that to continue to be the case. She also raised a vexatious issue around transport and the fact that transport is often an additional element with which carers struggle.

Timothy Gaston referred to the fact — it is really important — that there are many, many children who are also carers. We need to provide specific support across a wider range of areas, and that takes us into Education and other areas, as well as Health. We absolutely need to try to protect those children and give them the best start that we can with the resources that we have. The Minister made a number of key points. Crucially, he acknowledged that the system would — it is a fact — collapse without the input of unpaid carers. That is the starting point from which we must address the issue. He also referenced the need to improve the transition from child into adult provision. That has been a long-standing issue, and I welcome his recognition of that. There is a need for regional consistency — it is included in amendment No 2 — and a need to address the fact that some people perceive that it is a postcode lottery. On the substance of it, the Minister outlined that this will require years of sustained investment, the recruitment of proper staffing and the creation of facilities as well. The Minister referred to work that he expects to take forward imminently, and I welcome that we are seeing that renewed focus. I also acknowledge the programme that brought some attention to the issue. The Minister outlined the three things that are needed here, and I fully agree with each of them. However, I will add a fourth: the will and the focus to finally bring some sort of improvement in this area. We are expecting too much of unpaid, informal, family carers, and we now need to absolutely do better by them. The respite provision for adult and children's services has, for far too long, been subject to underinvestment, and we need the Minister of Health and the Executive to prioritise those services to ensure that families can avail themselves of more regular respite and to ensure that we have a service that can cope with the demand going forward.

1,071 words. Text as published by the Northern Ireland Assembly.

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Assessed 21 October 2026 at 11:26 UTC by jev-1.13.0 (requested as typesafe/jev) under rubric 2026.10-r9, methodology 1.9.

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