Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome, from the Department, Nigel Chambers, head of learning, disability and autism; Mark McGuicken, director of disability and older people; and Oisin Martin, co-director for older people and children's emotional wellbeing. I also welcome Lyn Preece, director of children's services in the South Eastern Trust; and Colm McCafferty, director of children's services in the Southern Trust.

Nigel, I will hand over to you for some brief opening remarks, and then we will move to questions.

Mr Nigel Chambers (Department of Health): Good afternoon, Chair, and thank you for the opportunity to provide the Committee with an update on services for children with disabilities, and the additional investment announced by the Minister nearly a year ago. We are here to provide an overview of the changing operational context, the current position at a regional and trust level and the progress made to utilise the additional investment to improve services across a continuum of need and care. The paper provided in advance of today's session contains a blend of qualitative and quantitative evidence to improve the understanding of the nature and scale of the challenges across services, whilst setting out the clear improvements that have been made in the past year and the contributions from families that have been supported, to stress the importance of the right support from the right person in the right place at the right time.

Following our discussion on the matter in March, the Department and the health and social care trusts were very clear that further work was needed across the system to produce the urgent improvements that families were calling for. In addition, we have established a more robust oversight and monitoring set of systems to better measure the additionality as a result of the funding, while retaining a close line of sight on existing bed capacity and utilisation.

There is a clear message for the Committee and families today: over the past year, a significant body of work has been progressed due to the investment, and we can now see the positive impacts across the region for a continuum of services. Waiting lists for residential short breaks are down, and we can also see marginal but hard-won reductions in the number of children assessed as on the edge of care. Those improvements can be attributed to a partly re-mobilised short breaks service, but also to the significant volume of activity and service now provided upstream, meeting needs at an earlier stage and within the family home.

On culture and communication, work continues to shift the service from a child protection mindset to one that recognises that unmet need has escalated over a significant period of time, eroding the resilience of families and impacting on the overall health and well-being of children with disabilities. While today's message and update is a positive one, the view of the Department and the health and social care trusts is that further work remains. The progress made on short breaks is fragile and will remain so until the residential needs of children with disabilities are adequately met.

Work has been undertaken to develop a greater understanding of the population and presenting needs of children with disabilities, which will now be used to assist with planning future services and the transformation of services. Of the 22,000 children in need known to social services, there are approximately 5,600 children known to children's disability services. That is 25% of the entire population known to social services, and it represents a significant increase since 2016. While it is accurate to say that we have seen sustained growth since that period, the growth has been exponential since 2020, which marks also the point when we see a significant reduction in the short break service across the region.

Autism is an area of rapid growth, and it now accounts for half the children known to children's disability services. Although the rise can be partly attributed to better awareness and diagnosis of autism, we have to recognise and concede that more autistic children are slipping into the net of social work and social care. The seismic change in our population size and need has outpaced the capacity of services and our workforce. It is an important contextual point to understand how our services, particularly short breaks, have been repurposed for residential purposes. Equally, it is important to understand that unmet need has escalated across a continuum of services, from family supports to early stage intervention, our ability to respond to a crisis and everything in between.

While the benefits of early age and early stage intervention are undeniable, there will always be a small cohort of children with disabilities who will become very disregulated in adolescence, and they will be best supported in a residential care model. To date, we have undertaken a regional needs assessment of the residential needs of children with disabilities, and it concluded that Northern Ireland needs an additional 42 residential beds in the next number of years. Today, we have 26 commissioned beds; we need 68. The work forms part of a wider exercise, as part of the strategic reform of children's services, and we are now at the stage of undertaking costings for ministerial consideration. Unless the clear gap in residential capacity is addressed, the short break service will always remain at risk of being repurposed to provide medium- to-long-term residential placements.

I will briefly cover the progress to date, but the paper sets out in detail an update from each trust, which we have largely provided verbatim. However, I would like to draw your attention to a few key highlights. As a result of the investment, we can see that an additional 377 overnight short breaks have been provided across the region, and capacity is due to continue expanding over the next number of weeks and months. Over 20,000 additional hours of supports have been provided for children outside of short breaks, and that correlates with a comparable number of family support hours as well.

As we get to the inevitable, "So what?" question, we can now see the impact of the activity. There has been a 20% reduction in our waiting lists for overnight short breaks in Northern Ireland. In the Belfast Trust, Forest Lodge and Willow Lodge have opened for short breaks and residential placements, respectively. That has provided a significant level of support for families, but there has also been an expansion of services for those not accessing short breaks, including moving the children's inreach support service from a five-day provision to a seven-day provision.

The Northern Trust has completed its successful pilot to transition a male with complex needs into supported living, which will form learning for the rest of the region. It has been a key enabler in restoring partial short breaks provision in the Whitehaven respite unit. It is due to move to full provision in the next number of weeks, following the transition of the second individual who is supported there.

Lynn will be able to speak about the progress made in the South Eastern Trust, Greenhill is now operating to support 13 children on the edge of care, construction work is complete in Redwood, and we are moving to Regulation and Quality Improvement Authority (RQIA) assessment and regulation, which moves us closer to the next phase of work: the remobilisation of short breaks in Lindsay House.

The Southern Trust has expanded capacity in existing residential short breaks, utilised capacity in the voluntary and community sector and is now working to further develop its short breaks fostering model, which Colm can provide more detail on. I am hopeful that we can spend some of our time today discussing the benefits of fostering short breaks in providing an alternative option for some families by providing day breaks, overnights and the longer-term potential to provide medium- to long-term placements for children.

Last but not least, the Western Trust reported over 11,000 hours of short breaks and outreach activity provision, utilising capacity across a range of voluntary and community sector providers, including the NI Hospice.

By no means does that noteworthy progress take away from the challenges that must still be faced by children with disabilities, their families and services. There are a number of continuous reminders of how much work lies ahead and the fragility of the short break service, particularly due to the gap in residential placements. Vacancy rates across children's disability teams have crept up and, in line with that, so has the number of unallocated cases. While that challenge is not unique to children's disability services, short breaks vacancies can be found in multiple programmes of care across the region, and the Department is taking action. Lyn and Colm can speak to the work in their trusts to address unallocated cases and vacancy rates, but there is an important message to stress today, namely that a reduction in the number of unallocated cases cannot be achieved by simply increasing the number of social workers. There is an important role for family support in meeting the needs of people who are currently awaiting assessment.

In conclusion, we are in agreement that there are significant challenges ahead in providing the required number of short breaks for our population. We should not take away from the substantial amount of work that has been progressed in the past year, which has resulted in a vast expansion of early intervention and family supports, along with the additionality created within short breaks and residential care, ultimately resulting in the reduction of our waiting lists by 20%. I am hopeful that the evidence provided today gives assurance to the Committee and families that the Department and the health and social care trusts know what challenges lie ahead but that we have a clear plan to address those challenges and are utilising the additional funding to achieve the maximum impact.

The Chairperson (Mr McGuigan): Thanks very much, Nigel. There was some positive news in that. You finished by talking about the additional funding, and, without going into the minute detail, it would be useful to know where it was spent. In your presentation, you say that a number of the trusts are facing challenges with recruitment, for example. It would be useful to know what additional resources went in, how we plan to overcome the challenges when it comes to workforce constraints and what the Department is doing to encourage more people into the workforce.

Mr N Chambers: We have provided information to the Committee before on how the funding was distributed, and we can provide that to you again in writing. It was provided on the basis of capitation — by population size. That was the most efficient and probably fairest way to allocate the funding, with the Northern Trust receiving the highest level of funding, which is reflective of its population size.

The Chairperson (Mr McGuigan): I did not even mean the trusts. I am thinking about where that money went and, percentage-wise, how much was spent on workforce, beds and other scenarios.

Mr N Chambers: We provided that information at our March update, but we can provide another update. Yes, a certain amount of funding will be attached to what was provided for residential short breaks, the voluntary and community sector and recruitment of staff. That is information that we have to hand. Some of how that money was spent up until March has had to shift in the past number of months to reflect the workforce challenges.

The Chairperson (Mr McGuigan): That is my question.

Mr N Chambers: I will pass to Lyn and Colm to outline how we have navigated those challenges. I am thinking about Redwood and some of the others.

Ms Lyn Preece (South Eastern Health and Social Care Trust): I am happy to answer that. We did a significant recruitment campaign back in March, particularly for Redwood. Since then, we have also done recruitment for Greenhill and to our Lindsay House outreach service, which is an outreach support daytime short break service to families. That was really successful, and we have managed to recruit to the majority of those posts. Only a small number of those posts have not been filled. Crucially for us, we have also been able to recruit to our community teams. We have not recruited social workers to those community teams because it is not always social workers who are needed to support families. We have recruited some family support workers, and each of those family support workers will carry a caseload overseen by a social work service. So, it is a social work-led service. That has helped us to close the gap in some of the vacancies that we have experienced.

In the South Eastern Trust, we have experienced a significant drop in the number of our unallocated cases because of that. We are doing the final stages of recruitment in the Lisburn area. Hopefully, when that is concluded, we will see our unallocated cases reduce to a negligible position by December. Therefore, we have had a successful outcome in recruiting for residential services and for the community teams.

The Chairperson (Mr McGuigan): In the briefing paper, there is a summary of all additional activity per trust. There are 19,000 additional hours across the five trusts. Some of the trusts have a substantial number of hours. The Southern Trust has nearly 10,000 additional hours, and other trusts have fewer than 2,000 hours.

There 1,786 additional families, and when you divide those hours by the number of additional families, it works out at 10 hours per family over a six-month period, which works out at 1·5 hours per family, using my crude maths. Is it as crude as that? Is it divided equally, or do some families get 10 or 20 hours and some families get none? The 1.5 hours per family does not seem like an awful lot.

Mr Colm McCafferty (Southern Health and Social Care Trust): I can help to respond to some of that. It is important to point out that those are additional hours. It is not that it was starting from zero.

In all the trusts, at different stages, even prior to the very welcomed new investments, there was still very significant activity taking place. The additionality that we are talking about is over and above what had already been there. Therefore, it is important to look at it through an existing baseline of activity, and that was the additionality that we have been able to develop as a consequence of the new investments.

Mr N Chambers: I will just add to that. You have partly answered it. There would not be an equitable distribution of support hours. It would be aligned to assessed need. You are right that some families will need more support than others, depending on where they are in respect of the continuum of need.

Also, trusts had to decide how the funding was used. Some were in a position to spend more of that money upstream than others, in that others had to focus more on the remobilisation of their short-break service.

Mr Oisin Martin (Department of Health): I can put a bit more meat on the bone of that. The binary equation that you have engaged in there probably does not illustrate the differential allocation of resource to children.

I have made some crude notes about investment in voluntary sector organisations in the Southern Trust, and that is an exemplar that is happening across the region. Through the YMCA, three young people have received a total of 55 additional hours. Through Barnardo's 6th sense, six young people have received an additional 90 hours. Through the Child Brain Injury Trust, five young people have received an additional 20 hours. Through play therapy sessions, five young people have received an additional 30 hours. Through Goal Line support, six young people have received an additional 240 hours. Therefore, resource is differentially allocated based on assessed need.

The Chairperson (Mr McGuigan): OK. That information is useful.

With regard to access to respite care, you are saying that there are 42 additional beds, but we need 68 beds in total.

Mr N Chambers: Residential beds.

The Chairperson (Mr McGuigan): Yes. What is the average residential stay per person, given that we are short of beds?

Mr N Chambers: That residential needs assessment relates to medium- to long-term care. With the loss of the short break service, it is being squeezed through two different areas. First, there is a growing population, and we have been unable to provide a diverse continuum of services to prevent or minimise their need for short breaks. We are talking about hundreds of thousands of families who are now accessing those services. That is what is coming upstream. The other central challenge — this is where the residential needs assessment is important — is that we have lost short breaks capacity to provide medium- to long-term residential care for children to become looked after. That assessment is for medium- to long-term needs. Once they are moved into those placements, we would be talking about it being a number of years. That would then recover the lost short breaks service.

Trusts have carried out targeted investment with the money that has been provided to date. It is probably useful to use the example of Whitehaven here. Providing transitions for two young people from Whitehaven into supported living with Positive Futures, which is an adult learning disabilities service, enables the recovery five commissioned short breaks beds that a number of families can use in rotation. That facility has quite a high volume and can run seven days a week and handle a higher level of complexity than some other sites. That is the challenge. We need to work upstream. With the population demand that we see. We need to recover the beds that have been lost for residential purposes.

The Chairperson (Mr McGuigan): Absolutely. The challenges are immense. The 20% reduction to waiting lists is welcome.

You present to the Committee regularly, and a lot of our conversations have, quite rightly, been around more complex needs. Today, you have given an assessment of how successful you have been in providing support to families, particularly those with children with the most complex needs.

Mr McCafferty: It is important to look at the continuum of care. The number of residential beds that has been mooted is based on the presenting need in the context of how we are currently configured. It is my point of view that we need to be much more ambitious and sophisticated. We absolutely have to push to develop services upstream.

We need to look at children's disability from the point of view of basic initial family support. In the Southern Trust, we are hugely indebted to a vibrant community and voluntary sector, which we have been able to significantly upscale, particularly with the new investments over the past 12 months, getting that in early and as flexibly as possible. Thereafter, it is about the continuum again. There is a significant cohort, and I suggest that there is significant potential for us to upscale short-breaks fostering across the region. Short-breaks fostering provides really worthwhile overnight short breaks with families for children who can be managed in that type of family arrangement. If we get that right, it would reduce the demand for residential short breaks.

In the ideal scenario that we need to work towards, children who are placed in residential short breaks would be at a sufficient level of complexity that they cannot have their needs met in that family setting. If we get that right so that that regular, consistent response and support is available through residential short breaks, our objective is for that to further reduce the number of children who are on the edge of care and the need to have children in full-time residential care. We need to aspire to that continuum as we seek to get those processes in place.

The Chairperson (Mr McGuigan): I absolutely agree that we need to aspire to that. How close are we to that? How well are we doing, at this point?

Mr N Chambers: That is why the funding has had to be spread across a continuum of services. If we focus simply on the short breaks service, whatever gains were made in recovering that service would be lost to more and more children entering the system, increasing in complexity due to unmet need. To take Colm's example, that is why addressing a wider continuum of services for children with less complex needs would essentially protect the short breaks and residential services for those who have much more complex needs.

To go back to my opening remarks, the panel fully concedes that there is a small cohort of children who will become so unregulated from the time of adolescence that they will be destined for residential care. Having that diversity of support for the wider population will protect that service for that cohort, ensuring that the service is waiting for them.

The Chairperson (Mr McGuigan): OK.

Mr Donnelly: Thank you very much for the update. I want to go back to the start of this, which I think was the Tara Mills documentary 'I Am Not Okay' last year. It highlighted the issue across Northern Ireland. I commend the families who opened their doors to that programme in order to highlight the issues presented by living with and caring for their children: not having their needs met at home had resulted in very serious issues.

I do not believe that there would have been any progress without that documentary and without the bravery that those families were able to show us. Where we are today with the funding that the Minister announced subsequent to that came from that. It was £2 million in the year and then £13 million a year. We have heard from Phil asking where that was spent. We did get documents on that in March, I think. If we could get an updated version of that, that would be good for us to see, particularly to see where it was spent on additional bed nights and additional short breaks. We want to see where that money made a difference to families. How many more short breaks? How many more nights?

I am aware of what you were saying, Nigel, about the pressures in the short-break system. It became residential, effectively. I am very aware of what happened in Whitehaven. A six-bed unit became a two-bed unit for a long, sustained period. I am very glad to hear that that is now being resolved. I have been told that it has been resolved again and again and again, and there have been missed deadlines for Whitehaven in particular. I am very glad to hear that one of those young people has now been brought into supported living and that there are plans for the second one so that that can be fully opened up again and the families in the area can start to get the service that they need to release the pressure on them.

For the families who are going back and getting the short breaks again, what is the time between their short breaks? Is there an average time when they are being able to access short breaks?

Ms Preece: It varies. Again, it is down to assessed need. We are very clear that it is obvious that a number of families are in great need of a significant number of short breaks over a monthly period, for example. There are families that are in receipt of, maybe, two or three nights a month, and there are families that are in receipt of overnight short breaks once a week, maybe twice a week, depending on the circumstances. It depends on the assessed need or the presenting need at any particular time. What has been really important is the engagement with families to try to understand that and understand where they are at a particular point in time. It really goes back to the assessed need of a particular family at a particular time.

Mr Donnelly: Are those families getting their assessed needs? Are they getting the assessed allotted time?

Ms Preece: There will always be a number of families that will not necessarily get the number of short-break nights that they have been assessed for, so that is compensated for by other things. For example, in the South Eastern Trust, which I will talk about in particular, we have increased the number of short-break hours during the day to families. Last week, I met one family that is not represented today where the mother said that that was better for her. She felt that that was meeting her needs and those of her son in a better way. It is not that we are going to take away the short-break nights from that family, because they need that too. It is just another way for offering a service to a family that it is benefiting from.

Mr Donnelly: I can see that, but, from my experience, it is the short-break nights that families, certainly those in our area, have been looking forward to being able to get again.

Can you give us a few figures? How many families are on waiting lists? I know that you said, Nigel, that it is down 20%. Can you give us the figures for the waiting lists or for short-stay facilities and how long the average wait is?

Mr N Chambers: Two hundred and sixty-three families are on the waiting list for residential short breaks, which represents a reduction of 20% from 332 in April this year.

Mr Donnelly: There are still 263 families on the waiting list. How many of those are designated as on the edge of care?

Mr N Chambers: That is something that we would have to take away. Our edge-of-care numbers are currently 81 across the region, so you can take from that that not every family that is on the waiting list is defined as edge of care.

Mr Donnelly: Is there an agreed and standard definition of edge of care? How do you define a family as being on the edge of care?

Mr N Chambers: We look to our social work colleagues on that.

Ms Preece: Again, it goes back to the presenting need. It relies very much on the assessment, how the family are coping and a range of other factors; for example, what support they might have from within their own family, whether that is available, how useful it is or not, and what supports they have. All that contributes to an overall assessment of how a particular family might need a service.

Mr Martin: Maybe I can remark on that front as well.

Mr Donnelly: Are there agreed standard criteria for falling under that definition of edge of care?

Ms Preece: We do an understanding the needs of children in Northern Ireland (UNOCINI) assessment. A number of things fall into that in terms of how we assess a child in need. A child with a disability is a child in need. How we assess their needs beyond that with regard to what they need for, say, an overnight short break, daytime short break or other external supports all falls into the assessment. As regards the criteria, it depends very much on what a family's coping mechanisms are, what other support strategies they have and what other family networks might be available to them.

Mr Martin: The mobilisation of the in-year money has coincided with the introduction of monthly oversight meetings. That, in turn, has necessitated from within the strategic planning and performance group (SPPG) an interest in those edge-of-care figures, and they are now collated centrally by SPPG in the context of that monitoring activity. I took a briefing from the people who are close to the ground in that regard prior to the Committee meeting, and that is now starting to yield a dividend in being able to embark upon a much more granular assessment of where unmet need really is across the trust areas. For instance, in the Northern Trust area, a view is starting to emerge that it is the northern part of the Northern Trust area — the Coleraine locality — that will need core investment in the future. In the Western Trust, it is the southern part of that area. The Belfast Trust has a more generalised need for investment across the piece. That data is being collated now. I think that it is being collated in response to a concern that was expressed at the Committee that there was no dataset to inform activity in and around that. Hopefully, we can appropriate that to commissioning activity in the future. However, to double down on what has been said: there will, absolutely, be a need for long-term sustained investment into the future.

Mr Donnelly: Certainly, what we have at the minute is nowhere near what will be needed. We know that.

Mr Martin: No, and that point has been made by other people who have appeared in front of the Committee previously. However, that does not mean that we are not ambitious and determined. An incredible amount of work has taken place in that space. I would not want to imply any complacency about that. The benefits that we have seen have been hard won. The system is still incredibly brittle. It needs to be recognised — I am sure that it is — that the young people whom we are talking about are extremely complex young people in their own right. We have the sorts of binary equations where we are looking at the number of beds that are available and the number of nights into which those translate. Sometimes, we are looking at caregiving ratios that mean that we cannot use all the beds: maybe, we can use only two or three beds in a six-bed unit at any given time. The challenges that we have in the Rosebud Cottages unit in the Western Trust really demonstrate that. We have one young person there on a long-term placement whose needs are so complex that we could not approach placing any other young person there for a short break while that young person is there. Therefore, the data needs to be interrogated with that sensibility in mind.

Mr Donnelly: I appreciate that. Certainly, I am aware of cases where young people require multiple members of staff. Sometimes, there are ratios of up to 4:1; for example, when somebody has been living at home with their family and is then moved into a service and high numbers of staff are required to meet their needs.

Mr Martin: In that context, in the past year, some novel ideas around in-reach have been shared amongst the trusts and moved forward. In one trust, it is called "in-reach" and, in another, it is called "outreach." It has provided models of short-break provision that maybe do not always extend to overnight provision but are nonetheless very meaningful. They generate space for families to have family time in a different way or free parents up to spend time with other siblings. From a utilitarian perspective, we are obliged to think across the broad spectrum and continuum of services and to think in that space about novel and different ways in which to provide short breaks.

Mr Mark McGuicken (Department of Health): May I add to that, Danny? RQIA sits on the oversight board and works with us in a very collaborative way. It still has a regulatory role. It was very supportive of our approach in the cases of the two young men in the Northern Trust area who moved to supported living at 17 rather than having to move somewhere else and then move again at 18. We are working to do what we can to deliver the reopening of the short breaks.

Mr Donnelly: I know people who will be very glad to hear that.

What are you doing to support family members? Are any other services available to the siblings, for example, or other members of the family?

Ms Preece: Yes. Where there are other children in a family, we provide support, such as after-school activities or care, additional direct payments to families or self-directed support that they can utilise in whatever way would be most helpful or meaningful to them. When we do an assessment, we take account of all of the family members, including other siblings.

Mr McCafferty: We have a similar process.

Mr Donnelly: OK. No problem. Thank you.

Mrs Dillon: I am going to pick up on the last point first: the direct payments. They cannot be used in whatever way the family wants. That is the reality for families, and particularly those with children who have medical needs. A child may have been assessed as needing eight nursing hours and six social hours. They will be given their eight nursing hours but are told that there is no provision for the six social hours. The family cannot use direct payments because their child has a nursing or medical need.

My question, then, is directed at our departmental friends. What is the Minister doing to address that? It needs to be addressed urgently, because, at the moment, that is a real bone of contention for families with the trusts. I am quite sure that that is the case for you in your job in trying to look at what is available. Essentially, direct payments are not available to those families whose children have the most complex medical needs.

Mr McGuicken: A number of work streams are ongoing on that, Linda. There is work ongoing on what can and cannot be delegated. That is being led by the Chief Nursing Officer and the Chief Social Work Officer in the Department. I sit on that work stream from a policy perspective. We have been talking about what can and cannot be delegated for some time now. We are taking further legal advice on what can be delegated and whether a social care task can be delegated or whether a nursing care task can be delegated. We are also doing a piece of work through the collaborative forum to look at how we make better use of managed budgets and how we better support people who are getting direct payments. A project is being taken forward through Impact, which will look at running a number of pilots across all the trusts to determine how we better utilise direct payments and the whole managed budget suite of work.

I agree that it is really challenging when you are caring for someone and taking on the responsibility of employing a personal assistant through a direct payment. We are very aware of that. I agree with you: it is challenging, and there should be consistency across all the trusts, and it should be easier. We should look at what it can be used to deliver. We are looking at a number of projects that are happening across the water, involving prepaid cards, for example, which will make a lot of those processes easier when it comes to providing receipts to the trusts and the governance around that. We are looking at what those can be used for. We have relaxed the rules around family members becoming personal assistants and being paid for some of that support. It is a huge issue, among others that we are dealing with at the moment. I do not have a timescale for you as to when that will be resolved, nor do I have a programme to say, "This is exactly what we are doing". That work is, however, is one of the work streams that is being taken forward under the auspices of the social care collaborative forum, as part of wider social care reform.

Mrs Dillon: When you have a time frame, can we get it? It is a source of frustration for families that they get letters saying that they can avail themselves of direct payments, having been told that they cannot do so.

Mr McGuicken: Absolutely.

Mrs Dillon: They are being told that they have six hours of social care needs but that no one who is not a nurse can provide for those needs. They are told that they are being given eight hours of nursing needs, but not the other six hours of nursing needs, even though their child has nursing needs. I make the point again, because it is worth making: those are children with very significant medical needs.

Mr N Chambers: I will add to that. This is an issue that transcends children's disability services.

Mrs Dillon: It does.

Mr N Chambers: It is a big issue in adult learning disability services. The Department is fully cognisant that people with learning disabilities will be born with a much higher level of comorbidities than the general population. We need to get the medical issues and supports right. In our previous discussion, we talked about transitions of complex people. If we do not get the medical bit right, their transition options when school finishes will be limited, because their transition options are defined by their percutaneous endoscopic gastrostomy (PEG) feeding, epilepsy or diabetes, as opposed to being what they want to do, how they want to do it and who they want to do it with.

Mrs Dillon: I agree. It is a much wider issue, obviously, with people with disabilities dying much younger. We have seen all that evidence and the programme in England. That is something that absolutely needs to be addressed.

I would like to see something come from the Department on the direct payments issue.

Mr N Chambers: We will provide something to the Committee.

Mrs Dillon: I would appreciate that. I am aware of the work that Impact does. I have been able to use it very recently to help a family. That, hopefully, will be of some help to some families, but, obviously, it will not address all the issues.

The figures that we have for children with a disability known to social services, those on the edge of care and those waiting for residential short breaks have all reduced slightly, though not in significant numbers. However, there is a rise in the number of unallocated cases. Are the unallocated cases assessed in those top three categories? I assume that they are children with a disability known to social services or they should not be in the table at all. The table is in your paper.

Mr N Chambers: We have it.

Mrs Dillon: It is on the page with the heading "Current Position".

Mr N Chambers: I am looking at it now.

Mrs Dillon: The "on edge of care" category has reduced by two. Do we know whether any of the children among the unallocated cases are on the edge of care? Do we know, among the unallocated cases —? I am trying to simplify this, but I am making it more complicated than it needs to be. Whilst those cases are unallocated, have they been assessed? That is probably the easier way to ask the question.

Ms Preece: The children who are assessed as being on the edge of care and the children who are on the waiting list for residential short breaks have received an assessment. The children who are unallocated are not part of those two groups in which the children are the more complex cases and are assigned to a social worker and have a social worker working with them. In my experience, the children who are unallocated tends to be the group of children who have much lower-level needs and can be worked with by a family support worker, for example. They all have an assessment to determine whether they can be managed with a family support worker or whether they need a social worker.

Mrs Dillon: OK. I want to discuss the issue of assessment when there is a reduction in respite or short-break placements. I refer to that issue of when somebody who needs residential care goes into a setting and that means that the setting can no longer be used for the short-break service. In my experience, the short-break service is consequently reduced to everybody across the board. Is each family being assessed? We know that some families may be in greater need for lots of different reasons. They may have other caring responsibilities, have somebody who is bereaved or be in mental distress in some way. A family may be in greater need for a number of reasons. Is that assessed, or is it just done as, "We can only give so many nights, so many hours, so we are just going to have to reduce availability to everybody across the board"? Can you give me reassurance on that? Is that decided across the trusts, or is it left to each trust to decide?

Mr N Chambers: That is ultimately about the prioritisation of service when need exceeds supply. Our trust colleagues will be able to talk to that. Those are difficult decisions that the trusts have to take.

Mrs Dillon: I understand that, but is an assessment done of each family when there is reduced availability, or is it done as, "We have to reduce availability to everybody; it is the fairest way"?

Ms Preece: In my experience, it is not a broad-brush approach; rather, we prioritise the greatest need. That is the experience in my trust.

Mrs Dillon: Is that a direction that comes from the Department, or is that left up to trusts?

Mr McGuicken: It is an operational decision for the trusts. We have not directed trusts that that should be the approach.

Mrs Dillon: So they may do it.

Mr McGuicken: They may do it.

Mr Martin: I will offer a comment about the realpolitik of what unallocated cases are, because I think the question that you are posing is whether these children are lying fallow, with no attention being paid to them. They will all have received an assessment through the initial reception gateway process into the trust. Young people can become unallocated for a range of reasons: social work vacancies, maternity leaves, illness. The teams do continue to provide an oversight and monitoring role in those unallocated cases. As Lyn said, high-risk, high-priority cases are not allowed to gravitate into becoming unallocated cases.

Part of this discussion also needs to reflect on unallocated cases being a perennial challenge across all children's services teams —

Mrs Dillon: I understand.

Mr Martin: — in particular the family support and intervention teams. There is also a part of the discussion in relation to this cohort of children that needs to advert to the reality that they do not all require an allocated social worker to achieve traction in terms of services being provided. There are other professional grades that can provide care at band 3, band 4 and band 5 within a social work-led model.

In relation to the broader questions posed, we maybe need to engage with the trusts about providing a bit of narrative to offer the assurance that you are looking for.

Mrs Dillon: I appreciate that, Oisin. Thank you.

Ms Preece: I will give an example of the unallocated cases in my trust. We did an exercise with those young people by using Encompass, which showed us the number of visits and professional points that those children had had. In fact, in one case we were reassured that one child had been seen 91 times by varying degrees of professionals at different stages. In some ways, that provided us with the assurance that those children were being seen and their needs met, whatever those might be. Being unallocated to a social worker is not going to reduce the services that families and children need at particular points from, for example, allied health professions, schools or whatever it might be.

Mrs Dillon: I appreciate that. Nigel, you mentioned the 42 additional residential beds across the North. Is the provision of those additional beds being looked at as, "Some for this trust and some for that trust", or is it being looked at on a regional basis? We are going to provide those beds. I am going to say to you what I said to the previous panel, and I am not asking this to catch you out, but are you going to provide those beds right beside where everybody lives? I know that that is probably not going to be possible, but I just want to understand. My actual reason for asking is that I want everybody to have equitable access. I do not want people in the South Eastern Trust are not being able to get a residential bed, while everybody in the Southern Trust can. That is my trust, and I could be selfish and say, "I want everybody there looked after", but I want to make sure that every single family, young person or child who needs that support is getting it.

As an aside to that, Colm talked about maybe not needing that level if we did the upstream stuff and people were getting the short breaks. Are we looking at that as, "That is something that we need to plan for, but let us invest in the short breaks and see if we can reduce that"?

Mr N Chambers: There are a couple of questions there.

Mrs Dillon: Also, are the committees in common talking about this issue as a region-wide issue, how they help each other and how all trusts ensure that everybody is looked after in the same way?

Mr N Chambers: The needs assessment was undertaken in collaboration with all five trusts to understand what they need within each trust area. That is how you get the figure of 42 residential beds needed. In the next phase of that work, we need to undertake a costings exercise through both a revenue and a capital lens. We have been working with the trusts to understand what estates are there that could potentially be repurposed, because that is a significant increase in residential services. As I said, we currently commission 26 beds. That excludes the short-break piece, but we have 26 beds in Northern Ireland, and we need an additional 42. They will be provided on a local basis as trusts will provide local services to meet local needs.

There was a question about equitable access. Generally, with short breaks, we have found that, with the exception of Belfast and the South Eastern Trusts, trusts provide short breaks to their own population. If we addressed that residential demand through sustained investment, which would take years with regard to capital and workforce, you would not need to be in a position where one trust needs to access the support of another, because we would be adequately providing services against the assessed needs of the population.

Mr McCafferty: Again, if the Committee finds it helpful, I think it is really important that we do not just solely focus on residential short breaks, for the reasons that I talked about, because, even if we went down the track of commissioning those 42 additional beds, it is a hugely expensive part of the service. We need to be clear that we are looking at all alternatives, such as early intervention, prevention, community and voluntary sector and short breaks fostering, which I talked about earlier. It is really important to maximise that in all trust localities, because I believe that is actually when you get a really accurate picture of what the need is for residential. It is really important that we focus on that.

Mrs Dillon: I asked a question about the committees in common. Is this being discussed at the committees in common around what works best in each trust and how that can then be rolled out?

Mr McCafferty: The committees in common have just had their second meeting. It is fair to say that, at this moment in time, they are very much medical-orientated with the number of priorities there. To answer your question, Linda, this is not, but it is being addressed at the moment through the various work streams that were established following the independent review, otherwise known as the Ray Jones review, where a number of work streams were established. For example, I chair the fostering work stream, and a component of that is the preferred model of short breaks fostering for children with disabilities. My colleague in Belfast chairs the residential work stream, which looks at all of that. As we potentially move towards the regionalisation of services, all of those work streams will absolutely need to focus on the consistency of provision across the region.

Mrs Dillon: That is what I want to see for every family that needs support, because I am really worried about the false economy and what we are costing our health service. I understand why the committees in common are focused on the medical stuff right now, but actually, that has been the problem. That is why our children and adults with learning disabilities and complex needs have been neglected for so long. They are at the bottom of the pile. It is a bit like the previous presentation about mental health needs and addiction services. I do not even like using that term, because it is not fair and it is a bit cruel to say it, because you are talking about human beings and families, but it is the truth. They have been neglected, and that costs our health service. It costs us all, because these are children who want to have good and fulfilled lives, and families end up breaking apart with their own physical and mental health needs. That all costs our health service.

Mr McGuicken: Linda, to pick up on that, and on Danny's point as well, on the back of meeting the families that are sitting behind us, the Minister put that investment in, prioritised the investment and made it recurrent, but that is only the first step. We appreciate that there is a lot more to be done. I agree that a lot of the social care elements of health have not had the true focus that they might have done. I firmly believe that, under the previous Minister and the current Minister, social care is now spoken about in the same voice as healthcare. I take your point about the committees in common looking particularly at the acute element at the minute, but this is on the agenda, and we are getting it on the agenda with regard to social care for children and adults. It is now getting the recognition that it needs within the Department.

Mrs Dillon: OK, and I will wait for you to come back on the direct payments stuff.

Mr McGuicken: Yes, we will come back. Absolutely.

Mr N Chambers: We also committed to writing to you on the managed budget pilot a few weeks ago.

Mr McGuicken: That is coming to you.

Mr N Chambers: We will put it in the same paper.

Mrs Dillon: Thank you.

Mr McGuicken: That way, we get an extension on that paper.

The Chairperson (Mr McGuigan): Mark, you mentioned the investment. Are we on course to spend the £13 million this year?

Mr McGuicken: We are on course. We are working with every trust. Part of the role of the oversight board is to scrutinise the delivery of that. There are challenges with that, Chair. With regard to the £13 million, we have a bit of an underspend at present, and we are working with the trusts on that. It is really challenging in terms of workforce, and we have said that already. Some of the trusts, particularly the South Eastern Trust, are taking a different approach to recruitment. There is still, largely, an embargo on recruitment. We are prioritising some of those areas, and we are working with the trusts to make sure that they are fully utilising their money.

The Department's position is normally that, if there is an underspend in any other area, it is brought back into the centre to meet the deficit. The Minister has been really clear that he wants this £13 million spent for the purpose that it is being spent on. Therefore, at this point, we are not handing anything back to the centre as part of the deficit. It is being spent, and we are doing everything we can to make sure it is spent, on the purpose that the Minister allocated it for. We are working with the trusts every month to make sure the money is spent. There are some underspends, and we are working with the trusts to utilise them. Nigel mentioned that we did it on a per capita basis, but if there is an underspend in one trust and it genuinely cannot spend the money, we make sure it is offered to the other trusts. We are looking imaginatively to see whether we can move some of this from programme to capital in-year. Basically, the Minister has told us to do everything we can to make sure that it is spent, and that is what we are doing. The role of the oversight board, which meets every month, is to scrutinise the plans and see exactly what has been delivered as part of the investment.

Mr N Chambers: It is also to intervene if we see an issue where departmental intervention, a discussion with a trust or the RQIA can remove any blockages to the delivery.

Mr Robinson: Oisin, you made a comment that pricked my attention. It was about the data that is informing need, and you specifically referred to the north of the Northern Trust area, and I represent the north coast area. You referred to the investment that will be required in the future. How will that look? The simple solution that some people might say is to build more, but Nigel and Colm have already clarified that it is very expensive to build additional residential and respite units.

Mr Martin: It is.

Mr Robinson: For those families, who will be keen to see what that investment will look like, can you provide us with some detail?

Mr Martin: We are at a very early stage in our relationship with that data. In part, my answer pivots back to the remarks made by Mark and Nigel about the longer-term investment of money in capital projects, as much as anything. We are starting to see how the data can be appropriated to illustrate where the hot spots are, and the northern part of the Northern Trust area is one sector that is quickly emerging into view, along with the Belfast Trust and the southern part of the Western Trust area, where part of the problem for families is the amount of time they have to invest in traveling to and from the resources. You will appreciate that your constituency has areas of considerable rurality. We also know that in some rural areas, particularly in the Western Trust, there are challenges in recruiting some of the core professional multidisciplinary posts that support the provision of services, particularly in psychiatry and psychology. We are at an early stage in our relationship with that data. I cannot answer any more substantively at this stage.

Mr Robinson: The summer grant schemes have been highlighted as very successful by the Northern Trust . Can you tell us a bit more about how those have benefited families?

Mr Martin: Can you give me a second, please?

Mr Robinson: I am not in any way begrudging families, and it is an absolute need, but how much was spent on that? I note that 287 families benefited from that.

Mr N Chambers: We will provide the breakdown of spend to you outside the meeting. When we provided it before, for the written updates for the March meeting and the summer update, we drowned you in a lot of information and data to the point where, even as officials, it is difficult to see the patterns. We were keen for this submission to provide a high level of information so that you could see the additionality and the impact across some of those regional numbers. However, we may have lost some of the information that you want to see at a granular level about what the spend is and what the summer grant scheme provides and funds. We can provide that for you.

The Department, the trusts around the table and trusts generally are conscious that summer holidays, and any holidays during which special schools stand down, are a real crisis and tension point for families; they worry about them instead of looking forward to them. Colm's trust has done work on summer provision. A number of trusts have expanded their summer, Easter and Christmas provision to try to help to meet that gap. Summer grants were part of that; that was a mechanism for doing it. Colm's trust did something different. They have all gone about summer in a different way.

Mr Robinson: Are those summer grants new? Will they be rolled out every year, from the £13 million recurrent?

Mr McCafferty: That is absolutely what we are doing in the Southern Trust. We have always had a degree of being able to upscale activity again. As I said, we are really indebted to our voluntary and community sector, which works closely with us in that respect. The new investments have enabled us to commission extra activity. We also have a very good working relationship with local councils. There are a number of very good summer and Easter schemes that we do in collaboration with Armagh City, Banbridge and Craigavon Borough Council and Newry, Mourne and Down District Council. Those are joint ventures. The additional funding enables us to mainstream that and to do it on a recurrent basis.

Mr Robinson: Was feedback collected from the 287 families who benefited from the scheme in the Northern Trust? I assume that it has been rolled out to most, if not all, trusts.

Mr Martin: I can answer that, because I bought myself a wee bit of time to scrabble around for the specific information. There was £70,000 mobilised in the Northern Trust area, in collaboration with the Mae Murray Foundation.

Mr Robinson: Do you know what was spent in total, including in the other trusts?

Mr Martin: I do not have the total immediately to hand.

In relation to your second question about feedback, there is positive feedback on offer from the families who were engaged. As a telling additional aside, there is very positive feedback on offer from the staff involved as well. They have expressed a sense of renewed morale and belief in what they are doing because they are able to mobilise that money and engage with families in novel ways that maybe hitherto had not been the case. It is no substitute for the core need for residential overnight short breaks, but it is making a difference, and there is testimony and positive feedback on offer from a number of the trusts.

Mr N Chambers: Since we last spoke to you, our data sets have developed further. I can hear from the questions today that there is an appetite for more granular data, but we do not want to drown you in a level of data that inhibits our being able to tell a story, whether positive or negative. The bulk of the spending in your trust area has been on the recovery of Whitehaven. The two transition arrangements are, essentially, high-cost placements. From memory, the average is £700,000 per placement, which is comparable to high-cost placements in adult learning and disability. That is what the recurrent spend is.

Mr McCafferty: Different trusts are in very different places with that for different reasons. We have very good support from our foster carers, and we have been able to maintain our short breaks residential service. The majority of our investments have gone into the voluntary and community sector, with some enhancements in terms of new service developments and social work teams.

Mr Robinson: There is some commentary about some of the positive action in the South Eastern Trust, which was focused on engagement with families. Have other trusts taken similar proactive steps to engage with families?

Mr McCafferty: Again, we are very indebted to quite a number of families who work with us. A number of years ago — the Committee may be familiar with this — there was a paper that was regionally endorsed and launched in this very Building called 'Our Journey Through Disability', which subsequently became known as 'Our Journey'. It was based on wholesale family engagement and was written, by and large, through the lens of the family and their experiences, hence 'Our Journey Through Disability'. Every trust very much focuses on seeking —. There is not a perfect system of service-user engagement, but we are absolutely committed to trying to continuously improve that.

Mr Martin: I can provide a bit of additional perspective. A robust piece of patient and public involvement engagement with service users was done on the expansion of the Belfast Trust's in-reach service, which garnered very positive feedback. It was also central to the redesign of that service into a seven-day-per-week model. Families said, "Look, we need support at weekends, at times when the children are not at school". We are also embarking upon a regional consultation through the Cedar Foundation with children and young people. They are meeting this evening down in the Southern Trust area, where we are actively engaging with children and young people and, on a de facto basis, with their families in relation to the overall design of services, so we are moving forward with that sort of collaborative intent.

Mr Robinson: I am conscious of time, Chair.

The Chairperson (Mr McGuigan): OK, folks. No other members have indicated. Thanks again for coming before us and answering our questions. We appreciate that it is not easy to submit us with the correct information, Nigel. The report that we got was very useful. There is some additional information that would be helpful, so if we could get that, it would be much appreciated. Thank you.