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

Debate contribution by Mr Colin McGrath on 21 October 2024.

MLA

Mr Colin McGrath

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 4604230

Read the official Assembly record

Text

Thank you, Mr Speaker. I thank the proposer of the motion, which is timely and is on a matter concerning some of the most vulnerable people in our society. When considering the motion, the SDLP felt that it could be strengthened and enhanced through our amendment. In discussing the provision or lack of provision of respite services for adults with a learning difficulty, I fear that we do a disservice by not including children in that discussion. Recently, along with Claire Hanna MP, I had the opportunity to meet parents from the Forgotten Voices campaign on behalf of the National Autistic Society Northern Ireland. That was highlighted profoundly in a recent BBC NI 'Spotlight' programme that examined the care that children with complex needs and challenging behaviours require. Meeting those families and hearing their stories first-hand really was a deciding factor for us in tabling the amendment because we just cannot allow children's voices to be forgotten in the discussion. That is why our amendment simply includes "and children" after each of the references to adult services. We feel that it is really important that we do not overlook safeguarding and protection and also the services that we provide for children. From the outset, it is important that there is joined-up activity in the Executive. This is not simply something that rests with the Department of Health. In speaking to some of those families, we were able to hear, for example, that there are many times when the PSNI is called out to deal with a child with a learning disability who is displaying aggressive behaviour. That child is not a criminal, but the police response is to put them into the back of a police car. There is also the unintended stigma that is attached when that is seen to take place in their community.

Absolutely. I totally agree, but the regrettable reality is that, unfortunately, we are left in a scenario where the police are called in to provide that support. They are almost providing a public order response to it because those are the only tools at their disposal. Maybe we can look at joined-up working so that that is not the approach that is taken. Something positive to come out of the debate could be to see whether there is an opportunity for Justice and Health to work together to tighten up protocols in the Departments. For children and adults with a learning disability, as the motion rightly references, respite provision is not a luxury but a necessity for parents, families or other unpaid carers. It is a necessity for those carers — those family members — as well. Respite services allow the family structure at home to be maintained, and I am sure that Members across the Chamber will have been contacted by families of children or adults with a learning disability and will know the stories of the routine that happens at home when there is a breakdown of the family in that way. For those families, daily life is not straightforward. Nothing is a simple matter, no two days are the same and almost everything is exhausting. Many of those families often feel that, by speaking this aloud or admitting they are struggling, it is a reflection on their capacity or ability as a parent: nothing could be further from the truth. Admitting that they are struggling is a reflection on their humanity, and there can be nothing more human than knowing that you need help and support. It is actually a real strength, and those families have my utmost respect and admiration. By availing themselves of respite services, the families can just breathe for a day or two, gather their strength together and ensure that, if they have other children, for example, those children can maybe get a bit more attention during that time as well. I am often reminded of my previous career as a youth worker, where I saw that maybe bringing people into the youth club for an hour or two provided that little bit of space for the family to get a few bits and pieces organised that maintained family life and allowed the young people to engage with peers and enjoy some fun time. They are among the most vulnerable in our society, and, if we are not doing everything that we can to safeguard them, we have to question what we are doing. We have come a long way in safeguarding and protecting children and adults at risk. However, we know that there is a long way to go and, as time goes on and times change, how we safeguard children and adults at risk is an ever-evolving process. Respite services play a critical role in that task, and it is regrettable that the services that I have detailed are so intermittent in how they are funded and resourced. It is not a lifetime ago that the state would not have recognised the value of children and adults with learning difficulties and often would have just put them into an institution and locked the doors. Times really have changed and we can move away from that and have a model where people can be maintained at home and supported, but that can only be maintained if the support is there. If the support breaks down, the maintenance of life at home may fall apart. I reflect on a phenomenal facility in my home town of Downpatrick in South Down, called Mainstay Down Residential Project. The facility was set up in 1990 by local families who had family members with learning disabilities, complex needs and challenging behaviours and wanted the best possible care for their family members. What began as a residential project for nine people has grown over the years to supporting over 150 service users who are assisted through residential supported living, respite care and day opportunities. That is all taking place and is a prime example of where families came together when they identified that their needs were not being met and wanted to do something about it. The exceptional committee, staff and volunteers continue to look at what they can do to provide more help and support. It has been in existence since 1990, and I would hazard a guess that not everyone across the Chamber will know of its work, but I am sure that they know, in their own constituencies, of similar organisations. When it is the voluntary and community sector doing these things, you have to wonder if it becomes a postcode lottery. If there is a good solid community organisation in one place, people in that area get services. However, if there is not the same provision in the voluntary and community sector somewhere else, people may not get the same level of service. I will conclude with an interesting thing. The voluntary and community sector tell us that, with a little more money, they could do much more, yet we are told that statutory services do not have the resources but have the money. If we were to match things up and give more money to the voluntary and community sector, they could deliver those services. Then we might be able to reach out and provide more services for adults and, as per the amendment, children as well. From speaking to those parents, I have heard first-hand exactly what they have had to face but also that they felt that they were not being supported. It felt like that was the bit that hurt them. They felt that, when they were in their moment of need, nobody was there to help them. There was no emergency respite provision, and there was no ongoing respite provision. They feel that, when they are crying out for help, nobody is there to assist them. I hope that the fact that we are having the debate and that there was the 'Spotlight' programme gives us the opportunity to use all of our collective energy to see what we can do to help some of the most vulnerable in our society. I hope that everybody can accept that it is about adults and children and can accept our amendment.

1,366 words. Text as published by the Northern Ireland Assembly.

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