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

Debate contribution by Mrs Linda Dillon on 21 October 2024.

MLA

Mrs Linda Dillon

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 4604213

Read the official Assembly record

Text

I beg to move

Go raibh maith agat, a Cheann Comhairle.

We tabled the motion to call on the Minister of Health to urgently address the critical issue of respite provision for adults and children with learning difficulties, complex needs and challenging behaviour. I know that we have discussed the topic on many occasions, with the Minister and with officials, in the Committee and outside it. It is an issue of real concern. The lack of adequate respite services across the North is a matter that deeply affects countless families. Those are families that are doing their absolute best to care for loved ones in incredibly challenging circumstances. As outlined in the motion, respite is not a luxury. For unpaid carers, it is a lifeline, and it is essential for their physical and mental well-being and for the continued care of those whom they look after. It is essential to prevent the breakdown of family relationships and to ensure that those carers can continue to care for those for whom they have a caring responsibility and those whom they love. Respite allows carers to manage everyday activities that most of us take for granted. It offers a break from the relentless 24/7 care that they provide, yet families are often told at short notice — I am sure that many of us in the Chamber will have lobbied trusts on behalf of families — that their respite has been cancelled. That is a gut-wrenching blow for those who depend on that support to continue caring for their loved ones. They may have waited for that respite for over a year, or they may never have had respite before. That is often the only period of respite that has ever been offered, and, when it is withdrawn, that can throw the carer into a spiral of despair and hopelessness and leave them feeling completely abandoned by our health service.

The staff who work in the facilities and dedicate their lives to providing care deserve our deepest respect and praise. The crisis is not of their making, and the cancellations highlight the inadequate provision of respite services for adults and children with complex needs and challenging behaviour and the pressing need for additional investment and better forward planning. We are witnessing a growing demand for the services as more and more children transition from child services into adult care every year. Although that trend is set to continue, as things stand, many facilities cannot cope with the rising need, and many trusts are under severe pressure. It is not just about planned respite: we also need to consider the growing need for unplanned or emergency respite when families face a sudden crisis. There must be provision to step in when carers are unexpectedly unable to cope because of illness, injury or other emergencies, including death. The reality is that, without increased investment and planning, the pressure will continue to build. We must ensure that families can access regular, reliable respite services and that those services are protected and expanded to meet future need. Families who are already under immense pressure should not have to face the added stress of losing vital support services because of arbitrary boundaries between trusts. We must address that inequity and ensure that respite provision follows the person, no matter where they live or what trust is caring for them or, in some cases, not caring for them, which is the problem that we face. I am aware of incidents in my area of the Southern Trust when respite provision has been completely withdrawn because one individual needs residential care. That is not the fault of the individual. I absolutely accept that that person has that need, and we should never blame them or their family. However, the difficulty is that, because respite is not a ring-fenced and protected provision, that is what happens, and we have unplanned closure of respite services. Furthermore, we must not ignore the transitional challenges for young people moving from children's respite into adult services. The lack of coordination and planning between child and adult care systems leaves too many young people and their families and carers in limbo during that critical period. That issue will only grow as more children with learning difficulties and complex needs reach adulthood. We need to ensure that the transition is seamless and that adequate resources and facilities are in place. Campaigns such as Forgotten Voices have shone a spotlight on the importance of respite provision, giving a voice to those who are too often ignored. Their tireless advocacy reminds us that families are asking not for the world but for the basic support that they need to continue caring for their loved one. Insufficient funding leads to under-resourced and ineffective services, limiting the support available to families. There is no doubt that respite services are underfunded, but there are also serious challenges in staff recruitment and retention. The learning disability staff who work with adults and children are committed to and passionate about ensuring that they give the best care and opportunities to those whom they look after and their families. We witnessed that at the learning disability nursing careers event in the Long Gallery this morning. "Well done" to all who were involved in the organising of that event and all who participated in it. It is really important that we have enough staff and that they are well trained, well looked after and well supported. The staff cannot do this with one hand tied behind their back. Trust between staff, families and carers is essential. However, when respite provision breaks down, that trust is damaged, because families feel that they have been failed. It is the front-line staff who have to face those families, and they should not be put in the middle of this because of a failure to protect respite care. We must ask ourselves what kind of society we want to be. Do we want to be a society that values carers and those whom they care for or one that leaves them to fend for themselves? I believe that the answer is clear, and Sinn Féin will not allow carers to be forgotten. They need to know that we have their backs. I call on the Minister to urgently develop a comprehensive plan that addresses the lack of respite provision for adults and children. The plan must include planning, additional investment and the ring-fencing of funds to ensure that services are protected and expanded. Unpaid carers in our communities need to know that we see them, that we value them and that we are committed to fighting for the support that they so desperately need. We will support the Minister in calls that he makes for additional funding, and we will support all of our Ministers when they go to the British Government asking for additional funding, because we know that that is needed. However, we really need to look at what respite services are in place and how we protect them now, today.

1,174 words. Text as published by the Northern Ireland Assembly.

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Assessed 21 October 2026 at 11:25 UTC by jev-1.13.0 (requested as typesafe/jev) under rubric 2026.10-r9, methodology 1.9.

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