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

Debate contribution by Mr Mark Durkan on 21 October 2024.

MLA

Mr Mark Durkan

Party at the time

Social Democratic and Labour Party

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 4604329

Read the official Assembly record

Text

Thank you, Mr Deputy Speaker. I thank the contributors to the debate, and I thank the Minister for the actions that he has committed to taking. Some of the stories shared and facts presented are nothing short of harrowing. It is harrowing that the current system means that some of our most vulnerable citizens are not given the support to live their lives with dignity and that our unpaid carers, who dedicate their lives to supporting them, are being punished. As 'Spotlight' so powerfully highlighted, those families are not OK. In the North, we face a serious lack of respite care provision for adults and children with disabilities. That gap places huge pressure on carers who are already stretched to the limit. The pandemic had a profound impact on those families, and it has served to intensify existing challenges. I have listened to heart-wrenching stories from parents and primary carers about struggling without respite throughout lockdowns. For many households, that monumental shift has had a lasting impact. In many cases, adults and children with complex needs have experienced a marked regression, behavioural challenges and a decline in their overall mental health. Their parents and guardians are broken. Yet, at a time when efforts should have been made to rebuild and increase access to respite, families are being pushed more deeply into despair. Instead of finding relief, they are being left to navigate their struggles alone and feel helpless. It is no wonder that two thirds of unpaid carers suffer from poor mental health. I would wager that, in reality, that number is significantly higher. Respite care should not be treated as a luxury. Since when was a lifeline a luxury? It is deeply concerning that respite capacity has not been fully restored, four years on from the pandemic, and that the children's respite units in four of our five health and social care trusts have been repurposed for residential services, which has left families with fewer options. In my constituency of Foyle, families that rely on overnight respite services at Rosebud Cottages have battled repeated temporary closures. Services are simply not accessible for many who need them, waiting lists are growing and, in some areas, there is no provision at all. Unpaid carers, who save our Health and Social Care system countless millions of pounds each year, are burnt out. They have nowhere else to turn, which begs this question: who cares for our unpaid carers? I echo the appreciation for the staff that has been expressed by some Members. Those committed and selfless individuals work with incredibly vulnerable people, often in incredibly volatile situations, for little reward other than the knowledge of the immeasurable good that they do. Staffing shortages continue to have significant implications for the provision of support packages. Many workers who left during the pandemic have not been replaced, sometimes due to funding difficulties and sometimes due to recruitment. It is not just the provision of short breaks, either; it is day care opportunities too. There is a lack of provision but also, at times, a lack of suitable provision. For example, young adults might be placed with older people with whom they have nothing in common. There are examples of great models in my constituency that provide support and stimulation. Such models need to be looked at and learned from. While direct payments have provided some relief, navigating the process can, at times, feel like an added burden rather than a support. That outsourcing of responsibility from trusts to families has been valuable for many, but the mechanism does not work for all. For some caregivers, who already have so much on their plate, it can feel overwhelming. We desperately need to review and streamline that system and signpost. For parents and carers of children and adults with a learning disability, access to support is an uphill battle at every turn. I often wonder how they have any fight left. From fighting for a diagnosis to securing educational support, school places and respite care, the battles can seem endless, yet our unpaid carers are the warriors and heroes of our day. They deserve our support and respect. The Minister mentioned Alma White, and I know many passionate and determined families in my constituency who will drive that much-needed and overdue change. It is great that there is consensus today that we will also do our best to do that.

734 words. Text as published by the Northern Ireland Assembly.

Assessment

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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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