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

Debate contribution by Mr Mike Nesbitt on 21 October 2024.

MLA

Mr Mike Nesbitt

Party at the time

Ulster Unionist Party

Date

21 October 2024

Type

Debate contribution (made as a minister)

Business

Private Members' Business

Heading

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

Assembly identifier

Official Report component 4604312

Read the official Assembly record

Text

Thank you very much, Mr Deputy Speaker. I thank all Members who contributed to the debate. I will start with a direct and clear response to the motion. The current provision for children and adults with learning disabilities is inadequate and has been for quite some time. I agree with the motion that respite is not a luxury; it is an essential and critical service for unpaid carers and their loved ones. The provision of respite gives recognition to the fact that most people with learning disabilities will remain in the family home throughout adulthood. I fully recognise the hard work and dedication of staff who deliver respite services. I also take this opportunity to pay tribute to unpaid carers. They have been mentioned often in the debate. Without the love and dedication of unpaid carers, the current model of social care for learning disability would collapse overnight. Mr McGrath talked about signs of humanity. Is there any greater sign of humanity than the love of the parents of children with learning disabilities that we watched in the 'Spotlight' programme? I accept that we need to address the lack of respite provision for children and adults. That will require immediate action but also forward planning and additional investment to grow and diversify the service in the coming years. It is important that funding for the service is ring-fenced and not used for residential and emergency purposes. To do that will require a comprehensive examination of the entire learning disability programme of care. I was struck when Mr Robinson said to me that if separating emergency and elective or planned surgery makes sense, it makes equal sense to separate out residential and respite care. My Department has a draft plan, and my officials have engaged directly with several of my colleagues in the Chamber in order to provide assurances that we know what the problems are and, more importantly, that we have a clear vision for the way forward. I will provide an update on the draft learning disability service model, which aims to recalibrate services to provide greater support in the community, including through the expansion of respite and short breaks. We engaged carers in the development of the model and we intend to do so on a greater scale through a public consultation in the coming months. Following that consultation, the model will form the basis of regional and trust-level commissioning and investment plans for years to come.

That is a valid point, and one that I acknowledge. Respite services for adults with learning disabilities account for approximately £25 million expenditure a year, which accounts for only 5% of the total learning disability spend. Trusts deliver and commission approximately 100 respite beds, which are used by thousands of families in Northern Ireland. There lies an obvious disparity; those are indicators that something is not quite right. I acknowledge that respite provision is most certainly not a luxury, but that it is indeed a necessity for many unpaid carers in our society. Those carers have continuously stressed the importance of periodic, flexible and planned short breaks, and of the importance of recognising the fact that short breaks provide the person being supported with a break from the family home and offer different activities. Nobody could put it better than Kellie Armstrong did in her contribution, which I acknowledge and for which I thank her. The services were significantly impacted on by the pandemic, as trusts balanced infection control with the practicalities of delivering a learning disability service. Members will be aware that my predecessor approved the pathway to remobilise services as we emerged from the pandemic, which enabled full restoration of day services and an ambition for short breaks. Today, the challenge is different. Demand exceeds supply, and there are significant workforce challenges. Also, trusts have reported a growing complexity of children who have transitioned into adult services. That can reduce capacity in day care and in short breaks, while requiring higher levels of staff and support. On my mind on a daily basis is the idea of transition and how we do it better, because we do not do it well. I am aware that there have been instances when short-break beds have been temporarily repurposed for emergency or residential purposes. For example, the Southern Health and Social Care Trust temporarily closed Woodlawn House at the end of last year for residential purposes, which cancelled a series of planned short breaks for several weeks.

I am keen to see to what extent the voluntary and community sector can play an enhanced role. I look back at my time as a victims' commissioner, when we worked closely with the voluntary and community sector, which delivered a lot of services for victims of our conflict. Having said that, I do not think that they should be some sort of "cheap alternative" to statutory services. It is a question of getting a balance there, but I am keen to work with the Northern Ireland Council for Voluntary Action (NICVA) and others to try to see how we enhance those services and pay for them appropriately. It can be a challenge when a family moves from one trust to another — again, that was raised by the second amendment — and it can result in a temporary loss of respite support. Whilst beds are commissioned on a localised basis, I have repeatedly said to the trusts at the highest level — chief executives and chairs — that I expect them to collaborate and cooperate. In my mind, the five geographic trusts are one trust, and that is how I want them to navigate these issues. Learning disability services now account for £500 million per year, supporting 9,000 adults and their families. Investment has increased significantly in recent years, but I do not see or hear that when I speak to carers and families. It is clear to me, as Health Minister, that we spend money in the wrong places. We respond to crises, placement breakdowns and delayed discharges. We need to rapidly recalibrate the service to provide greater support at an earlier stage and to better recognise the role of unpaid carers. It is important to note that that is not a criticism of the staff delivering the services. I fully recognise their hard work and dedication. Since the first day of my appointment, I have visited several learning disability services delivered by trusts and the independent sector. Each time, I have been amazed at what can be achieved through creativity, innovation and hard work. It is important to give Members a brief update on the work of the learning disability strategic plan. In March last year, the Department established a task-and-finish group to finalise a service model for adult learning disabilities and a framework for children with disabilities. The golden thread to progressing those products is a renewed and regionally consistent approach to transitions. That thread is critical to ensuring that adult services can appropriately forward-plan for children who are entering adult services in the future. On transitions for people with learning disabilities, I take this opportunity to pay tribute to the efforts of Alma White, the lead campaigner for Caleb's Cause Northern Ireland. I met Alma recently and was moved by her enthusiasm and the energy that she brings to improving transitional support for her son and for other children with special educational needs. I have committed my support to Alma and to working with the Department for the Economy as it explores options for legislative change. While we need to be mindful of what can be achieved in the remainder of this mandate, we should not be deterred from exploring opportunities to deliver better outcomes. In Health and Social Care, the learning disability service model aims to produce a regionally consistent service for adults, with an emphasis on supporting need at an early stage in the community. The model aims to ensure that the needs and views of families and carers are fully understood and that accessible support is available. It will ensure that families and carers will be offered the flexible, practical and emotional support that they need to support individuals to live in the community and have a meaningful life.

That will involve increasing the level and diversity of short-break services, with consideration being given to modernising existing services and environments to better support those with more complex needs. The model will be underpinned by a robust regional needs assessment, ensuring that the level of residential short breaks reflects the population size, living arrangements and needs of carers and families. It is clear that the level of that service will need to increase, but we also need to diversify the breaks provided.

Earlier this month, Professor Bengoa and I visited a Shared Lives service delivered by Positive Futures. It is an example of a different type of short break, where members of the public can be trained and supported to provide day breaks and overnight stays for adults with a learning disability. Self-directed support also provides flexibility to families, but I am aware that the administrative burden can be excessive. In September, my Department, in collaboration with Impact and the Association for Real Change, appointed a regional post to expand the use of managed budgets. That represents a better way to provide families with choice and control, with the administrative burden resting on the trusts. Both Shared Lives and managed budgets are central to how we will diversify and expand respite and family support in the years ahead. In summary, the service model outlines my Department's vision to recalibrate services and better support unpaid carers while providing the building blocks for robust forward planning. It is my hope that we will launch a public consultation in the coming months. While the motion focuses primarily on adult services — it would be expanded by amendment to include children — it would be remiss not to provide an update on short breaks for children. As part of the exercise commenced in 2023, significant work has been progressed to outline the way forward for Health and Social Care services. A framework for children with disabilities has been developed and is being implemented. Improvements across services will require years of sustained investment and workforce development. However, the recent BBC 'Spotlight' programme on short breaks has helped to focus minds and outline an immediate body of work that will be progressed in the days and weeks, rather than the months and years, ahead. This week, I will meet the families involved in the programme, with the support of the Children's Law Centre and the National Autistic Society. I have been presented with a series of costed options on the way forward. As Ms McAllister alluded to, that is something that I was expecting last week and got. I have spent significant time considering those options in the intervening days. I can tell the Member and the House that, depending on the outcome of one more meeting, which is tomorrow, I shall make my announcement. My Department fully recognises the scale of the challenge in services for people with learning difficulties. It is further recognised that several challenges that have been identified are long-standing and cannot be viewed in isolation. To put it into context, we need three things: the infrastructure, properties and places where residential and respite care can be offered; the funds to run it; and a workforce that is appropriately trained and committed. At least two of those things — the infrastructure and the workforce — cannot be magicked up overnight. The funding in the middle is an enormous challenge, but it is one that, I am happy to say, departmental officials have risen to at pace. I commend them for that. My Department will set out an ambitious body of work to address the challenges faced by children and adults with learning disabilities, enjoined through a revised approach to transitions. A point was made about police intervention and how inappropriate that was. It seems to me that that reflects the fact that, sometimes, when we have a really difficult challenge, we go for the easy solution, not the right solution. I assure the House that I want to be in the business of right solutions.

2,045 words. Text as published by the Northern Ireland Assembly.

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Assessed 21 October 2026 at 01:20 UTC by jev-1.13.0 (requested as typesafe/jev) under rubric 2026.10-r9, methodology 1.9.

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