Disability Services and Family Carer Support

Private Members' Business – in the Northern Ireland Assembly at 4:15 pm on 7th July 2020.

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Photo of Kellie Armstrong Kellie Armstrong Alliance 4:15 pm, 7th July 2020

I beg to move

That this Assembly recognises the significant impact of COVID-19 on children and adults with a disability and the exceptional contribution of family carers further to the cessation of many statutory and non-statutory services; and calls on the Minister of Health to produce a detailed plan for the resumption of services.

Photo of Christopher Stalford Christopher Stalford DUP

The Business Committee has agreed to allow up to one hour and 30 minutes for the debate. The proposer, Ms Armstrong, will have 10 minutes to propose and 10 minutes to wind. All other Members will have five minutes.

Photo of Kellie Armstrong Kellie Armstrong Alliance

Thank you, Mr Principal Deputy Speaker. I promise that I will not take my full 10 minutes, as I know that a lot of Members will want to speak on the motion.

I propose the motion not just on behalf of the Alliance Party but on behalf of a cross-party group of MLAs. I thank all those who signed the motion. I also recognise the work of the many volunteers and carers who contributed to it. I recognise the work of Chris Lyttle MLA, who is not speaking on the motion today, in negotiating with quite a few Members in the background.

We have come together to recognise the significant impact that COVID-19 has had on children and adults with a disability and the exceptional, amazing contribution of family carers throughout lockdown. From the outset, I want to confirm that the motion has been created with Families Involved Northern Ireland (FINI), which represents a regional network of carers and family members who provide substantial unpaid care for disabled adults and children. Those carers are part of the rainbow of heroes who have protected and looked after some of our most vulnerable family members, who, thankfully, have not come into contact with COVID-19. They have kept their loved ones safe, irrespective of the exhaustion and ongoing anxiety throughout the past 16 weeks.

One of the key issues with lockdown was the almost immediate withdrawal of many statutory and non-statutory services. That showed how quickly COVID-19 forced changes on us. So many people with disabilities and their families rely on those services. In most cases, services were removed without warning or consultation with families. The services included day care, respite care, day opportunities and other social care support. Carers took over immediately, providing full-time care and support. When I say "full-time", I do not just mean full-time working hours; I mean 24 hours a day, seven days a week. How do I know that? I know it because my amazing brother needs such care. My dad, who is in his mid-70s — he will not like me saying that — has provided full-time care for my brother with only short periods of respite provided by me and other family members. I know exactly what it is like to live with the fear that carers have. What if their loved one catches COVID? How would they cope in hospital on their own, without us? What would happen if I or my dad got COVID? Who would look after the person then?

For many carers, having to deal with the fallout of services being removed so quickly has caused many problems. Breaking routine throws a carer's world into chaos. It is difficult to explain to a loved one why they are not allowed to go to work, day opportunities or day care, watch them become more insular, almost retreating into themselves, or see their independence reduce, while providing all their care. Every day, that means that — I will explain what carers do — they wash the person, dress them, help them with their toileting, prepare their food and help to feed them. They are their entertainment; they protect the person; they do all the cleaning; and they wash all the clothes. They try to maintain good hand hygiene, but that is not easy when the person does not want you to touch their hands. That goes on day after day. The only thing that keeps the person going is that there is no one else to do it. The person whom you are looking after is your loved one. You will do anything to help, support and care for them, even if you are physically exhausted, emotionally drained and have not, perhaps, slept in days.

We also had school support provided, such as physiotherapy, occupational therapy and speech and language therapy. All that ceased to be available for children with special educational needs, which had a severe impact on the health and well-being of families. Not only had parents and carers to take over full-time care, they also had to act as teachers and provide the interventions that had to disappear. Families need to know when services will resume. They need to be part of that process. They will need to reintroduce their loved ones to a routine that once was and prepare them for the necessary changes, such as face masks, handwashing and social distancing. Some of their much-loved support staff will have gone, reallocated to other necessary services or, unfortunately, made unemployed. Minister, I am sure that you agree that carers and families should be recognised for their extraordinary efforts throughout the crisis. They have worked as hard as any of your medical staff for four months without a break.

There is a solution. I am not just saying how terrible everything is, and I hope that I can express the families' wishes in a way that honours their input to the motion. Carers need a detailed plan for the reintroduction of services for the person they care for. They need to be a part of creating that plan, and the planning needs to start now. Indications are that external services will not be restored to meet assessed need for a long time, and that needs to be clarified and shared with family carers. Carers need clarity, not rumours or suggestions. It would be really helpful if trusts could assess the long-term, night and day care and the impact that that has had on our carers. If carers go down, if they get sick, our health service cannot cope with taking over caring duties for the people with disabilities who are cared for and look after those carers. Carers need emotional support, and, while organisations like FINI have enabled carers to talk to each other, many other carers have not been able to speak to anyone and remain in isolation. Just before I came in this evening, I spoke to the Royal National Institute of Blind People (RNIB), who recognise the social isolation and terrible loneliness that is happening. The isolation and the sometimes overbearing responsibility that carers feel needs to be recognised and supported. We need to care for our carers and ensure investment and local support for them.

Family carers have asked for and must be given discretion to use individual budgets immediately for family or for managing a family member's support needs in a way that gives flexibility, choice and control. I appreciate that that may be for the Department for Communities or the Department of Health, but, to be honest, a lot of the red tape — the barriers — is in place through the trusts. It is time for us to trust our carers and enable them to purchase support until Health is in a position to provide it for them or with them.

Carers who work outside the home also need to be protected. A partnership between Health, Economy and Communities could create employment and benefit protections to allow carers to continue to care for their loved ones and not face being sacked, made unemployed or pushed into poverty because the statutory and non-statutory services are not in place. It is not just all about Health; it is a partnership.

Indeed, when considering partnerships, Health and Education must cooperate to deliver school services and support for children and young people with physical and learning disabilities.

We are here today to talk about our carers and with our Health Minister. Let us not leave carers behind. Let us not leave adults and children with disabilities behind. Being a carer is not all doom and gloom. It is a privilege to look after my family. There are days when there is a lot of laughter and you can see that the person you care for is happy and coping, and life is good. However, there are days when it is exhausting, frustrating and intolerable. Family carers have remained quietly behind closed doors in fear, desperation and despair. They have always called on their reserves of resilience to survive the most extreme circumstances, driven by the need to stay strong so that they can care for those who need them the most. After all, who else can they depend on? Mr Principal Deputy Speaker and Minister, I hope that today we can say that they can depend on us.

Photo of Pam Cameron Pam Cameron DUP 4:45 pm, 7th July 2020

I welcome the motion. There is no doubt that COVID-19 has had a huge impact on those with disabilities and their family. During the pandemic, many services that are normally accessed by adults and children with disabilities have been either suspended or disrupted as part of the public health response or health protection regulations. Some examples include the suspension of Disability Action's transport scheme; Shopmobility; charitable initiatives carried out in physical proximity, including counselling, overnight stays and group activities; restrictions on visiting learning disability units; the suspension of off-site visits to family or friends by those in supported living accommodation; and the closure of schools has had an impact on the social and educational outcomes for those with particular needs. I know that in my office we have been contacted by many families who are looking to us for help. These are very real concerns. To give one very brief example, if care has to be stopped for some reason and the family is able to manage in the very short term, will there be guarantees that the care will resume in the future? That is a big worry.

The nature of the COVID threat saw parents having to make emergency care plans for their disabled children in case they became incapacitated. Those are steps that no parent or guardian should ever have to take. This has obviously had a massive impact on mental health. Mental illness is the largest single cause of disability in Northern Ireland. Better awareness and acceptance of it is needed as a society as we chart the COVID-19 recovery. The measures that are proposed in the mental health action plan are a solid foundation. Some 70% of respondents to the Carers UK April survey in Northern Ireland said that they are providing more emotional support to those they care for, including keeping an eye on them and trying to motivate them. Those with disabilities should not be left behind in discussions on how to tackle the legacy of COVID-19 on mental health resilience. The recovery must be fair and equitable to everyone.

The pandemic has also put into sharp focus the disproportionate risk of mental ill health among unpaid carers. Eighty-one per cent of carers have experienced loneliness as a result of caring, and carers are up to seven times more likely to be lonely than the general population. We need to look differently at how we can better address the risk moving forward.

It is vital that COVID-19 recovery has a safe and central place for adults and children with disabilities, as well as those with caring responsibilities. The phased, or incremental, basis on which health and social care, community services, leisure facilities or businesses reopen should not unfairly disadvantage those with existing health conditions or impairments. There should be impact assessments, whether they are done formally or indirectly, for those with disabilities when making onward decisions. Equal access must be at the heart of this process. That means proactive and substantive consultation with service users, carers and their advocates. It also means regular evaluation of adherence to the wider rights of those with disabilities. Many young people with disabilities are seizing education and training opportunities, some of which have been suspended for the duration of the crisis. Those opportunities must not be lost, and those young people's prospects should be prioritised.

Another key requirement as we look ahead is maybe something that goes without saying, but is often not the case. This is about valuing carers. Unpaid carers played an integral role in the first wave of COVID-19 in preventing our health service from being overwhelmed. That contribution may not have been public-facing, but it is as significant and deserves the same recognition and appreciation as other roles. We believe that there is merit in considering a plan to review and potentially raise the level of carer's allowance or to provide an alternative discretionary payment to take account of the additional care provided by family members during the pandemic. Advocates like Carers NI and Families Involved NI have been pressing for that, and we urge Ministers to examine the potential for a proportionate and fair system of compensation. We are also conscious that the sacrifice of many carers in assuming additional responsibilities during the crisis may have had implications for their employment status. Government need to look at more effective means of allowing people to stay in paid work, if they want to. Many charities have called for a plan for long-term social reform and for investment in care and support services to give unpaid carers respite.

In conclusion, even amidst the upheaval of COVID-19, there are opportunities to be identified and harnessed to improve outcomes moving forward. We want to see Executive Ministers commissioning thorough research into and evaluation of the experiences of carers and those with disabilities during this crisis, as well as the impact of suspended services on their standard of life. This is about effective risk mapping and informed learning for the future. I commend the motion to the House.

Photo of Emma Sheerin Emma Sheerin Sinn Féin

No one in the Chamber would argue against an equal standard of living for those in society who live with a disability. However, it is not enough to simply state that we want to see people with disabilities treated equally; we have to act and we have to put in place the measures that will allow disabled people to live equally.

During lockdown, life changed for everyone, but the needs of those who require care remained the same, meaning that it was the carers, in most instances, who had to adapt. Caring for someone, particularly for a loved one with whom you share a home, is not a job that can be shrugged off and left at the back door in the evening; it is a vocation and something that not all of us are cut out to do.

It is worth remembering that care within the home is disproportionately the responsibility of women, and a study carried out by Carers UK in 2019 told us that 69% of female carers in the North of Ireland were unpaid. Of those claiming carer's allowance in the North in 2017, 68% were female. The same study demonstrated the financial and emotional impacts of the role, with respondents acknowledging what they miss out on and saying that they had suffered stress, anxiety and poor mental health as a result of their responsibilities, which are often in addition to work and relationship commitments.

Of course, there are also many challenges with direct payment care packages. Families are responsible for an employee, someone who is carrying out the care of their loved one, and so the usual stress of ensuring that their relative is being looked after appropriately can be compounded by worries about sick days or payslips. That has been magnified in recent times with concerns about the procurement of PPE or the securing of a COVID-19 test. I know from my experience of working with constituents on these matters that no two cases are ever identical, but the crux of the issue is the same: everyone wants the best for their loved one.

A recent report estimated that some 310,000 people in the North are caring for someone and that over 98,000 people became carers during lockdown. Those people are at the heart of today's debate. This pandemic, the consequent lockdown and everything that has gone with it are causes of significant anxiety for us all. For anyone suffering from an illness or living with a disability, the threat of COVID-19 is particularly sinister.

As the North went into lockdown, the impact of the sudden closure and the withdrawal of services on those who depend upon them was extremely hard to imagine. So, too, must be the decision to ask a care provider not to come into the home or to decline parts of a care package because of concerns around COVID-19. I know of constituents for whom carers became part of the family. Relationships build between the carer and the individual, and, when the arrangement is successful, it becomes an organic, natural, supportive situation; a friendship as opposed to a work arrangement.

I know families that avoided submitting a request for a care package because of their fears around coronavirus, with furloughed sons, daughters and siblings stepping into the breach during lockdown. These people have not had a break. They were not logging on in their pyjamas to work from home or spending furloughed days catching up on Netflix but were providing a service that they, in most instances, have had no training for. As well as that, the change in routine for those with disabilities is often unsettling and upsetting. The loss of respite services during COVID-19 has been significant. Without respite, families are providing 24-hour, seven-days-a-week care, which is obviously a massive commitment that ultimately can have a hugely negative impact on a person's physical and mental health. Put simply, we all need a break.

From a departmental point of view, allowing people to cope unaided for sustained periods of time will lead to a greater draw on resources in the long term. It is vital that as the rebuilding plans for health and social care services are developed further, the trusts and Department do not follow the same bias that occurred with the onset of the lockdown, where social care and carers became second or third in the list of priorities. The plans for resumption need to add value to the lives of our disabled population and to consider the concerns of carers. Carers need certainty on the resumption of statutory and non-statutory services. I know that it has been asked of the Minister before, but it is important that the issue is given serious consideration. The current arrangements and restrictions on what is considered care need to be revisited.

Given the lockdown, family home carers should be given some space to be employed, and what is considered acceptable for care should be relaxed in order to meet the exceptional needs. I commend the motion to the House.

Photo of Colin McGrath Colin McGrath Social Democratic and Labour Party

I rise to speak today, just two days on from Sunday, when we celebrated the 72nd birthday of the NHS, and I acknowledge the phenomenal work that goes on every day right across the health service. I also pay tribute to the many individuals with a disability and their families across the North, who have made such sacrifices during the pandemic and, indeed, will have helped to save lives. I pay tribute to the many family carers, who have given tremendous support and assistance, and I pay tribute to all our healthcare staff, who have given up their time, energy and even, at times, their lives to ensure that the pandemic did not have the biblical impact that was predicted. We need, and needed, our carers. In the midst of the worst days of the pandemic, what was the response of those local heroes? They gave comfort, they lived and breathed compassion and they helped to save lives.

In March, we saw the pulling of the handbrake on social services for adults and children with disabilities. With little warning and no consultation or engagement with those who would be most affected, it was gone in the blink of an eye. Essential daycare facilities and respite services were shut. Support staff and daycare staff were repurposed and transferred along or furloughed. All the while, family carers stepped into the breach and not only ensured that those with a disability were supported and cared for, but that the further risk of infection of family members was prevented. here we stand, on Tuesday 7 July, with the worst of the pandemic behind us, getting ready for a summer ahead, and what position have those local heroes been left in? In the worst days of the pandemic, we let them step up to the plate and protect some of the most vulnerable in our society, and what is their reward? Those heroes who worked unfailingly, with no conditions attached, and regardless of the impact on their physical, mental and emotional health, who oftentimes had to leave their own families behind so that they could care for others. How are they being repaid for that? Well, they are not. We are now being told that the indications are such that these services will not be restored to meet assessed need for a very long time, and no information is being given directly or being shared with the families.

Forgive me, I know that sometimes we in south Down feel very isolated and alone when we see moves to repurpose our beloved Downe Hospital. It looks, though, that we are not alone in this, when we see the same tough, difficult treatment being handed out to family carers. In some ways, I fear for the aftermath of the COVID crisis. Lots of people are talking about a new normal. I hope that there is a new one, because we cannot go back to the old normal. If the old normal meant that you could pull essential staff from a local emergency department, send them to a hospital where they were not needed and then tell them to go home and use their leave, I do want to see that normal. If the old normal meant that you can pull the handbrake on essential social services for adults and children with disabilities, it is not what we want to see. If the old normal meant that family carers had to put their physical, mental and emotional health on the line to care for others in the worst days of the crisis, and not be consulted on the future operation of the service, we do not want to be part of that new normal.

I know that our Health Minister likes to use the term "repurposing" and it has found a way into our new language, but, in this instance, I maybe actually agree with the Health Minister, although he may not believe it.

We need to repurpose our health service and find a new normal. What is the purpose of our health service? It is about the physical, emotional and mental well-being of everyone, whether you are a patient, a family member or a staff member.

As part of the repurposing, I urge the Health Minister to do three things that are entirely within his gift and to do so as quickly as we can. The first is to put in place flexible funding to be made available to family carers so that they can begin to plan alternative arrangements for care and support for the foreseeable future and so that they can get a break themselves and not be burnt out. Secondly, the Department must ensure that family carers are given the discretion to use individual budgets immediately for managing their family members' support needs in a way that gives flexibility, choice and control. Thirdly, family carers must be fully involved in any and all of the future long-term solutions. I do not think that that is asking too much, and, in case there is any ambiguity or confusion, I absolutely support the motion today and urge all Members to do so.

Photo of Robbie Butler Robbie Butler UUP 5:00 pm, 7th July 2020

I welcome the first cross-party motion since the resumption of the Assembly earlier this year, and I recognise the work of Chris Lyttle, the chair of the all-party group on learning disability, and the work that has gone into bringing the motion to the Floor of the House. It is good to be able to talk about a motion about some of the most vulnerable people in our communities and the people who provide the care for them, often in a hidden form. I also recognise the work of the all-party groups on learning disability and disability, which have, in my time over this past four years, been relentless in trying to give a voice to those who are often unseen and unheard. In those two all-party groups, we have the advocates, the carers, the community and voluntary sector, the statutory sector and the service users represented, and it is one of the most refreshing platforms to be working on as a politician in these days.

Mr Principal Deputy Speaker, if you do not mind, I will read out the motion. It is a powerful motion, and it seeks:

"That this Assembly recognises the significant impact of COVID-19".

When we assess the impact of COVID-19 across our society, those who are most vulnerable must be at the top of our list, not at the bottom. The motion recognises the impact:

"on children and adults with a disability and the exceptional contribution of family carers".

I think that "exceptional" is an important word there, because it is often unseen and unheard what family members and close friends do in the provision of care in the unpaid sector. The motion goes on to talk about the temporary withdrawal of:

"statutory and non-statutory services; and calls on the Minister of Health to produce a detailed plan for the resumption of services."

I support the sentiment of the motion.

It is important that we recognise what a carer is. It would be a disservice to not peel it back a little. A carer today, in 2020, we now know, can be a child. It can be adult; it can be a family member; it can be a friend who gives care to somebody because of their frailty, their disability, their addiction or some other issue because that person cannot cope. That person provides the lifeline for the individual. The thing about being a carer is that, many times, they do not see themselves as carers; they see themselves as having to fulfil that function because there is no one else. Carers are champions, and we should not be afraid to put them on the pedestal where they deserve to be. Whether they fall into that role due to being a parent or a child or a sibling, we need to recognise what they do and the value of that for the person who needs that care. It is very likely that most of us may perform that function, as my colleague Kellie Armstrong has eloquently said today and so many times. That brings a real level of reality to what we are talking about.

I looked at a report about the four top things that carers have been exposed to over the COVID pandemic. Some of them existed before, but they have been compounded and magnified by COVID. One of them is visibility. The doors have been closed, and, perhaps, it has been even harder to get out and to interact with other people and certainly to avail themselves of services. The next was isolation, and there has been isolation across all facets of our society. For those who were already isolated, perhaps, it is even worse. Access is what we are talking about today, because, for the protection of the carer and those who needed the care, some of those services have been restricted or stopped, to prevent them from an even more insidious danger. Then, there is grief and loss. If you are a carer, especially for someone with complex needs, the fear of the loss of that person is a constant, dark companion. It is a burden that is hard to bear and has been exacerbated by COVID. I wrote to the Health Minister on 24 May on that topic and asked several questions in respect of the impact of COVID and the impact on carers. I was delighted to hear that the Department was committed to working closely with the carer representative bodies and was cognisant of the Carers UK report 'Caring Behind Closed Doors: Forgotten families in the Coronavirus Outbreak' and that guidance was published on 10 April and 22 May. It was also good to note that mental health got a significant mention and that there was information provided on that.

As I come to the end of my five minutes, Mr Principal Deputy Speaker, it is with delight that I speak on the subject and support the motion.

Photo of Alex Easton Alex Easton DUP

It is estimated that up to 310,000 people in Northern Ireland may be providing unpaid care to a family member or loved one. Over 30% of those — 98,000 — have become carers since the COVID-19 outbreak began. Many of those carers will be supporting loved ones who have an incurable health condition or are at the end of their life. Because of COVID-19, social services for adults and children with disabilities were withdrawn in late March due to lockdown without warning or consultation with family carers. Paid support staff, including day-care workers, were reallocated to other services or furloughed. Facilities for day care, respite and other services were shut down. Family carers stepped in 16 weeks ago to provide all support and care and have kept family members free from infection.

Sadly, some terminally ill people have died since the COVID-19 outbreak began. The Northern Ireland Statistics and Research Agency (NISRA) has recorded 716 excess deaths in the year to 19 June. That means that there have been an estimated 3,580 more people affected by bereavement than at the same point in 2019, many of whom are likely to have been providing care to loved ones before they died. Before the outbreak began, capacity issues meant that demand for bereavement support was significantly outstripping supply. That pressure is only likely to have grown as a result of the increase in deaths and disruption in services due to social distancing and other lockdown measures. Providing care for a dying loved one can be an all-consuming role. It leaves carers with little or no time to recharge their batteries, spend time with friends and family or even to do the basic things that most take for granted, like getting a proper night's sleep or enjoying a meal. More than ever, in the context of COVID-19, access to respite and other support services provide a lifeline for carers of terminally ill people.

The reduction and closure of care and support services and the disruption to services from paid care workers will only have exacerbated these issues. Survey data shows that 44% of carers in Northern Ireland are providing more care than before the outbreak began because of the reduction or closure of support services. For many carers, the outbreak will be an even lonelier and more isolating experience, as they are cut off from wider social support networks and relevant services. Access to regular respite is critical in allowing carers to take a break from their caring roles, recharge their batteries and look after their own health and well-being.

It must be recognised that, while COVID-19 has served to intensify the burden on local carers, the pressures on the services that support them long predate the outbreak. For instance, the widely acknowledged financial pressures facing adult social care have often meant a reduction in the services available to patients and the carers who support them. A significant increase in funding will be needed to allow health and social care trusts to rebuild after the crisis as well as bringing forward plans for the long-term reform of adult social care. Identifying carers as a priority group requires emotional support services and the development of an agreed pathway for them to access interventions such as psychological talking therapies; work in partnership with third-sector organisations; and providing advocacy and other key support services to carers. Family carers need flexible funding made available to them urgently so that they can begin to plan alternative arrangements for care and support for the foreseeable future and get a break themselves. Carers must be given the discretion to use individual budgets immediately for managing their family member's support needs in a way that gives flexibility, choice and control. Indications are that external services will not be restored to meet excess need for a very long time, although no information about that is being directly shared with family carers. Family carers must also be fully involved in all future long-term solutions.

The Minister has published the strategic framework for rebuilding health and social care services, which I welcome and support. As part of the rebuilding programme, trusts have also produced and published plans for scaling up services. Those plans are now essential. They must be escalated, and we must ramp up service delivery, especially for children and adults with a disability, and fully recognise and support the exceptional contribution of family carers into the future. We owe them a debt of gratitude that must be paid by supporting them now.

Photo of Paula Bradshaw Paula Bradshaw Alliance

I fully support the motion and welcome the opportunity to speak. I hope that the cross-party nature of the motion will send a strong message to the parents and family members watching or hearing reports of our discussion today so that they know how much we care about the subject matter.

I start off by acknowledging how difficult the lockdown has been for families where one of their loved ones lives with a learning difficulty or physical disability. I have said many times in the Chamber that the lockdown measures introduced to minimise the spread of coronavirus have been and continue to be felt disproportionately by certain sections of society, not least this one. We have all been contacted over the last four months by people raising concerns about aspects of accessing healthcare, social care and education. One of the earliest contacts I received was from a worker in a day-care centre for adults in Belfast who was very concerned about the close proximity of attendees on the buses and in the activity rooms, as well as the lack of hygiene control measures and, probably from this person's perspective, the apparent lack of urgency to close operations and stop the spread of infection. Very quickly thereafter, they were all closed. However, we all need to recognise now that that decision, like many others at the very start, was not taken lightly and was reached with consideration of the full ramifications of ceasing such services. Let us not forget that, back in February and March, we were facing into the unknown. Figures for potential projected deaths were in the thousands, and none of us had a crystal ball to know how the virus would spread. From the start, one group of people who were acutely focused on the news and the latest information about the virus were the parents and partners of people who live with health vulnerabilities. Their principal job in life is to care for their loved ones and protect them from harm. Therefore, when the non-statutory services were closed, it was done without much dispute but with a sense of apprehension about how life would be for them as 24-hour carers without outside help and without the interventions of allied health professionals and other support staff who play such a vital role in working with people on mental and physical health and development.

At this point, I pick up on the huge efforts of the teaching staff in the special needs schools and the physiotherapists, speech and language therapists, classroom assistants and so on who have come up with inventive ways of continuing contact with the children and adults to encourage them to keep doing their activities, their exercises and their learning at home during these periods of isolation. I am sure that the parents and carers have really appreciated their ongoing support. However, I express some disappointment that it took so long for the guidance for social workers working with such families to be reviewed and updated by the Department of Health. I think it was about 12 weeks into the pandemic when that updated guidance came out. I had been contacted by parents who were acutely aware that, because outside carers were no longer coming into homes due to their legitimate fears about bringing in the infection, they were becoming reliant on their other children for support, essentially making them unpaid carers. Many told me of their acute stress and guilt at that, especially as the children were also feeling the pressure of their own absence from school and homework coming through, as well as their isolation from their friends and outside activities. I raised that issue on two occasions with the Minister at the Health Committee, and he came back to me with the answers I was looking for.

I was asking him principally about the potential for parents to use their direct payments flexibly, as is the case in England. When the long-awaited guidance came out, there was provision in it that social workers could work with families on a case-by-case basis. The guidance also required that the recipient of the money would have to pay tax and insurance and become, effectively, their parents' employee. All of that smacks of extra work and stress at a time when there was already a bucketload of both for the parent and the social worker.

In preparation for the debate, I had a quick look at the comments on posts that I created on my Facebook page during the pandemic to provide updates for carers. One comment jumped out at me, because it said:

"No shock there, we are always at the bottom of the agenda".

Ministers and fellow MLAs have talked much over the last few weeks about resetting our health and social care sector and better recognising the unnamed yet diligent members of our society who played a vital role in holding the country together during the lockdown. We owe it to the carers and their loved ones that disability services are better resourced and better meet the needs of children and adults. In so doing, we have to ensure that we listen, engage and do better, going forward.

Photo of Rachel Woods Rachel Woods Green 5:15 pm, 7th July 2020

Thank you, Mr Principal Deputy Speaker, for the opportunity to sign and speak on the motion.

As other Members have said, it is estimated that up to 310,000 people in Northern Ireland may be providing unpaid care to a family member or loved one and a significant number of people have become carers since the outbreak of COVID. Because of COVID, many families have had to make hard decisions about whether they wish to continue with some of the care that they had coming into the house. They have had to consider their safety and keep family members free from infection and face the closure of community, domiciliary and statutory support services. The effect on children and adults with a disability and the impact on family carers should not, therefore, be underestimated. The Assembly must recognise that and do something to help ease the pressure and burden that exists.

Local care and support services were closed, and health regulations have meant that key supports that some were able to access have been removed, including day opportunities and short breaks for respite, which are crucial for health and well-being. Members will have received briefings from FINI, the RNIB and the Coalition of Carers Organisations in response to the motion, giving their support for it and further recommendations. I hope that the Health Minister and other Ministers will take their points on board and commit to meeting all the groups that have come forward with ideas. I also implore the Minister to continue to engage with the sector, commit to co-design, truly listen to the voices of those who are supporting our most vulnerable and build back a better system that is supportive of our carers and those whom they care for.

The organisations that have contacted us are clear: they wish to be fully involved in long-term future solutions and to work in actual partnership and not just as part of a tick-box consultation. Additional funding and flexible finances must also be looked at in the short term for those who need to plan alternative arrangements for care and support to alleviate the pressures that are faced and for trusts to rebuild and deal with the long-term issues that face the social care sector and that predate COVID. I spoke to FINI yesterday and heard the stories and experiences of those women from before COVID and during this time. It was an emotional conversation, in which the realities of their lives were discussed. I thank them for their honesty and openness in engaging with me. What was loud and clear is that they need to be heard. They have ideas and solutions to problems, but many feel that they are not being listened to. They need support, but it must meet the needs of their family members and their needs as carers. They talked about the support that they have received through this time. Some said that they had had none — one or maybe two phone calls in 14 weeks from the statutory bodies. That is not good enough. They tell of day centres being used as storage units, with no firm reopening date, and of the day-care hours that they need being reassessed and reduced. They talk of inconsistencies between trusts and the inflexibility of individual budgets. They talk of the reassessment process for day care being redone and not on a needs basis. I want the Minister to confirm how assessment for future access to day centres and day care is being done and how the people who need it most and who need more care will be able to avail themselves of it. Any future detailed plan should include investing in advancing plans for the upgrade of day centres, for example, to ensure that our buildings are suitable, such as at Ravara Training and Resource Centre in Bangor in my constituency, where parents and carers have been lobbying for years for upgrades and a new centre. Despite business cases being submitted as far back as 2012, they still wait.

Unpaid carers are vital to keeping vulnerable people safe, yet many fear that continuing 24/7 care will lead them to burnout. Many people in Northern Ireland were performing a caring role in difficult circumstances during and before COVID-19, alongside trying to hold down full-time jobs, take care of family responsibilities and look after their own mental and physical health. We know that, before the outbreak of COVID-19, social care services were already in short supply and families with support met a high threshold to get any sort of care outside the home. Now, some of those services have disappeared, and unpaid carers have to cope alone, which adds to the burden and pressure. The Minister recently rightly stated that Northern Ireland faces a massive challenge in rebuilding health and social care in the wake of the first COVID-19 wave. We had a challenge before COVID, and we face an even bigger one now. Part of that is facing and dealing with the issues that existed, but we have an opportunity to build back better, to refocus and to do things differently, better than we did before. I commend the motion to the House.

Photo of Gerry Carroll Gerry Carroll People Before Profit Alliance

I thank the Members for tabling the motion. I am happy to have signed it and supported it. I thank all the carers in my constituency and across the North who have been working extra hard throughout the pandemic. I thank the organisations — a lot of them — that contacted me and other Members ahead of the debate.

The necessity to implement lockdown exposed how reliant we are on care workers, those who work in a broad range of environments to support people with disabilities and care needs and those who provide care in general, including family members. It was obviously not just that trust services were withdrawn; a broad range of community settings and services were no longer open due to lockdown. The current arrangement highlights the need for respite care, as we have heard, for the families of loved ones with care needs. The truth is that unpaid carers took up the mantle. Family members stepped in and stepped up to provide care when it was required. We should recognise that fact and the fact that, as we have heard, it is mostly women who carry out that work. They deserve not only praise and thanks but some sort of financial assistance or payment in recognition of that. There is a call for a family carers grant, which is something that, in my view, should be welcomed broadly by the House.

Family carers must be given the discretion to use individual budgets immediately for managing family members' support needs in a way that gives flexibility, choice and control. While it is, no doubt, the case that care workers employed by the trusts or whomever work hard and provide essential support, there was a gap in care before the crisis. The unpaid carers whom we are talking and thinking about today were often the ones who stepped in. Families Involved NI mentioned that, in a week of 168 hours, the state provides only 30 hours of support. That is far too low. We have also heard that more than 310,000 people provide unpaid care. That is a staggeringly massive figure that needs to be tackled. People need support.

The mantra of "No return to normal" has echoed loud and clear throughout the pandemic. We cannot return to a situation where the state fails to provide enough hours to families of people with care needs. We have heard in our correspondence about carers in their 70s and 80s who have had to provide round-the-clock care. I can only imagine how difficult and tough it has been for them to provide care for the people they love on a consistent, 24/7 basis, often without any respite at all. We have to recognise the role played by such people. They were integral in providing care when services were withdrawn. Family carers stepped in 16 weeks ago to provide support and care, and they have done essential work throughout that period.

We also have to recognise that people with disabilities have generally been overlooked by society when decisions were being made. One group in particular that is often overlooked is people who are blind or have visual impairment, and there are an estimated 55,600 of them in our society today. Obviously, social distancing is difficult for them to do, so, when we make plans for moving forward, we need to bear in mind those people. People who are blind or partially sighted have been shouted at on the street because they are not abiding by social-distancing measures. We need to bear that in mind.

We have to remember that many family carers face burnout. We need to act accordingly to support them. Many people have clapped for the NHS in the last few weeks. As we face economic ruin and recession, what better way to pre-empt that than by starting to employ and recruit more carers? That would, obviously, provide jobs, but it would also provide extra hours, as needed, to carers throughout the crisis and afterwards.

Photo of Christopher Stalford Christopher Stalford DUP

I call the Minister of Health, Mr Robin Swann, to respond to the comments that have been made. The Minister will have 15 minutes.

Photo of Robin Swann Robin Swann UUP

I thank everyone who commented and those who tabled the motion. The motion provides an opportunity to highlight and debate an important subject: the impact that the COVID-19 pandemic has had on our children and adults who have a disability, as well as those who care for them. I will begin with a simple but heartfelt "Thank you". It would be remiss of me to do anything other than express my sincere gratitude to the many families who have played such a significant part in keeping their loved ones safe during these difficult last few months. It would be difficult to overstate the debt that we owe to them.

Controlling the spread of the virus has, rightly, been our collective top priority and will remain so as we continue the process of easing restrictions. However, I am aware of the real challenges and difficulties that lockdown has presented for the families and carers of those with disabilities and complex medical conditions, many of which have been echoed here today. I publicly thank every one of those families and assure them that they and their loved ones have not been forgotten.

There is, however, much that we need to consider, as is evident from our debate. As I have said on many occasions, the pandemic has changed all our lives. That is particularly so for families including those with disabilities. I am acutely aware that many have faced either long separation from loved ones who are being cared for in a setting outside the family home or the taking on of caring duties on a full-time basis because of the scaling back of services or the closure of schools. According to a recent report that a number of Members have mentioned, nearly 100,000 new carers were added to the list in Northern Ireland as a result of the COVID-19 pandemic. That means that there are potentially well in excess of 300,000 carers in Northern Ireland now. That is a significant number of people whom we rely on to help the people whom they care for to live at home. In turn, carers rely on our health sector to support them in their caring roles. As some have said, it is a partnership. One of many lessons of the pandemic, however, is that we, as an Executive, need to work on strengthening that partnership. My Department, the board and the HSC trusts have worked tirelessly to provide what help and support they can in extreme circumstances, and I thank them for their efforts.

Recently, during Carers Week, we all had the opportunity to celebrate the role that carers undertake. This year's theme was making care visible. Mr Butler referred to that as one of the four main challenges. A report on the state of caring was launched by Carers Week, and it makes for sobering reading The challenges and anxieties faced by carers are very real. They impact on their relationships and finances and create feelings of isolation and being overwhelmed and undervalued. I have asked my officials to reflect on the findings in the report and report to me. There is no doubt that the toll that the pandemic has taken on our carers is tangible, going by what has come across my desk and the desks of other Members and what has been articulated today by Members advocating on behalf of those families and themselves. In particular, I have been struck by the real sense of what can only be described as fear that is being experienced by some of the families as they struggle to cope with the circumstances that they have found themselves in. They feel deep anxiety about their own health and well-being and that of their children at this difficult time and into the future.

I know that there is a deep concern among Assembly Member colleagues about this, and I share it and I am fully committed to addressing it by building on the detailed work that is well under way around the resumption of services.

On the closure of HSC day centres and schools, as many of you have already said, we saw the early standing down of most of our centre-based day services, along with some short break facilities across all trusts, in response to the COVID-19 pandemic. While we are cognisant of the degree to which many families rely on those supports on a daily basis, it is important to note that the action was considered necessary at that time to minimise the transmission of the virus among adults with learning disabilities and to ensure adherence to public health guidelines. We also saw the closure of schools, including our special schools.

In response to those closures, Members will be aware that, across Northern Ireland, as anxiety increased among families and carers who were struggling to cope at home, all the trusts put in place measures to redeploy their day-centre staff to provide alternative day, short break supports to families on a risk-assessed basis, and in accordance with COVID-19 guidelines. In many cases, that involved bespoke arrangements being put in place to meet the individual needs of those families, with some very laudable effort made to reach out to service users and their families and to provide in-reach services in day centres on an exceptional basis, while adhering to public health guidance. I know that that support provided much-needed respite for some families and it is worth acknowledging.

I will also take this opportunity to commend those working in the voluntary and community sector for the huge efforts that they made, and continue to make, to support their clients and families. The work that is being done at the grassroots by many organisations that have gone the extra mile and beyond is truly humbling. Organisations such as the Compass Advocacy Network in my constituency reached out to give us an update as to the steps that it had taken to support its service users. It also provides hope for us all that many organisations stood up and supported those families when they needed it. It also provides hope for us all that some good might come out of the pandemic through learning that can be applied as we plan for and seek to rebuild services for the future.

Many Members referred to the importance of cross-departmental, inter-agency working, and I believe that that is particularly true for our disability sector. I say that because one of the positive things to have emerged from the many challenges that the pandemic has presented has been the even closer working that we are witnessing between Health, Education and Communities. That can only be a good thing, and it has come about through the establishment of a joint Health and Education oversight group and local multi-disciplinary panels in trusts to help deliver an integrated support group programme for children with complex needs and the families who are in the greatest need.

Through Health and Education working together, children who rely on the routine and familiarly of school as a vital coping mechanism have been identified and placed in our special schools during this period. That was as a result of guidance that was developed and training that was provided by our health professionals. The collaborative working between Health and Education is continuing, and it will inform the planning of the Education Restart programme, including the health supports that are required for children in line with their statement of special educational needs.

Collaboration with colleagues in the Department for Communities and the Housing Executive has increased to ensure that supported living services can continue to reach the most vulnerable in our society during the pandemic.

During the pandemic, we have collated and produced a range of guidance products in formats that are accessible to those with sensory and learning disabilities. These resources include material from a variety of sources, targeted at helping people with learning disabilities and autism, and their family, express how they have coped with lockdown. The guidance products are available on the PHA website.

I have made additional funding available to Carers NI so that it can extend the operating hours of its advice line service, and, in response to a request from carers, a carers ID card has been developed and distributed to assist them with their in-store supermarket shopping. Officials are working with carers in the health and social care sector to develop guidance that will bring much-needed clarity to the complex subject of direct payments, which Members mentioned today. The trusts have been contacting carers and, where possible, offering additional support. Online stress management classes, carer support groups and health and well-being sessions have been organised to support carers through these difficult times.

My Department co-produced advice for unpaid and family carers, including young carers. That was published initially on 10 April and has been updated regularly since. This advice brings together a breadth of help and advice from across government, health and social care and other verified sources, making it an essential one-stop shop for busy carers. My Department has amended and produced updated guidance on other issues, including the course of the pandemic, to reflect the specific needs of people with disabilities and their families as our awareness of the impacts of the restrictions has increased. Travel for exercise and visiting guidance are two examples of this. Many organisations contacted us seeking clarification of the rules around exercise where there is an agreed need, perhaps requiring travel to a particular place outside a person's local area more than once a day. We looked into this immediately, and updated guidance was subsequently published and implemented across all trusts.

Following direct engagement with carers from a range of trusts, facilitated by Families Involved NI, we were able to ensure that their concerns about being able to accompany their loved ones into hospital were addressed in the latest regional visiting guidance, which I published last week. I very much hope that, moving forward, this example of co-production in action can be built upon.

Members referred to the recovery and reset plans. This is a good point at which to address the second part of the motion, which is the call for me:

"to produce a detailed plan for the resumption of services."

I am pleased to report to Members that detailed planning is under way across Northern Ireland for the resumption of services. Let me make it clear: I have made it clear that I want services to be recommenced as quickly as it is safe to do so. At the beginning of June, I published an overarching strategic framework for the mammoth task that we now face: the task of rebuilding our health and social care services as we emerge from this initial peak of the first COVID-19 surge. In doing so, I have made clear that we cannot look too far ahead or ignore the huge strategic challenges that faced the system pre-COVID and which have been further compounded by the pandemic.

As I said previously, the process of rebuilding will be incremental. In this context, under the auspices of the strategic framework, plans have been developed for a regionally consistent approach to the resetting and recovery of the disability services that, across Northern Ireland, were scaled back during the first surge. All trusts, in partnership with the independent sector providers, are developing detailed service-specific action plans informed by a range of factors. These include COVID-19-related staff absences; the ability to implement social-distancing measures in current facilities; the ability to return staff from redeployment; and local variation in infection rates and practicalities. Engagement with carers and independent sector providers on these plans is under way across all trusts. It is important to recognise that there have been practical barriers to consultation with service users during the pandemic. However, we must ensure that their views shape how services are reset and scaled up.

Initial feedback suggests that flexibility will be essential as we enter the recovery phase. Reflecting the demand for increased creativity in the approach to service delivery, and in the light of experiences during the first surge, incorporating the learning and new approaches developed in response to the pandemic will be central to our approach to restarting services and, indeed, to the future shape of learning disability services in Northern Ireland. To that end, the lessons learned from COVID-19 must inform the ongoing development of the learning disability service model for Northern Ireland.

In conclusion, it is important to emphasise that our understanding of the impact of COVID-19 on our population is a developing picture. Although the anecdotal evidence is clear and backed up by much of what has been said here today, we still have a lot to learn, particularly about its impact on various groups here in Northern Ireland, including those with a disability and their families and carers.

While I am confident that the detailed planning already under way reflects what we currently know, I am also fully committed to increasing our understanding of the impacts on children and adults with a disability and their families in order to inform our plans for rebuilding as they continue to evolve in line with the strategic framework that I have already published on the principles of co-production, which I am fully committed to as we move forward.

We will also continue to work in partnership with our partners across all Departments to ensure that the holistic needs of those with a disability and their families are met. On that basis, I support the motion today and thank the Members once again for bringing this important issue to the Assembly.

The last word must go to families: I assure you that your contribution to our response to the pandemic to date is much valued by me and my Department. I salute your resilience and your incredible efforts to advocate on behalf of your loved ones.

While we must recognise that the road ahead will be challenging and the service capacity will likely continue to be significantly impacted, it should not have to be a struggle for those who play such an important role in our system. We must keep striving to improve how we do things. As a system, I know that we will rise to that challenge, and I look forward to doing that with everyone who has a stake in making it better for all. I support the motion.

Photo of Christopher Stalford Christopher Stalford DUP 5:30 pm, 7th July 2020

Thank you, Minister. The Minister went a minute over, but, given the content of that minute, I think that I did the right thing in not interrupting him.

I call Mr Colm Gildernew to conclude and wind up the debate on the motion.

Photo of Colm Gildernew Colm Gildernew Sinn Féin

I am very pleased to be associated with the motion today. I also acknowledge the work that Chris Lyttle has done in bringing us all together on such an important issue.

Members across the board have largely recognised many of the groups who have engaged in the debate outside this Chamber, and families involved, who I did a significant Zoom meeting with a number of weeks ago, have been instrumental, as have a range of other groups. In the run-up to the debate, there was an issue raised in relation to whether or not this would be tokenistic. I recognised that concern from that group of people.

We all know that, in the best of times, carers are faced with very difficult situations and that the COVID-19 crisis has indeed accelerated many of those issues. It has left them further isolated and left them with further difficulties in relation to holding down a job and trying to manage their caring role at the same time. That is something that we need to be very conscious of.

I would also have been delighted had this motion included an element of financial recognition for the additional costs that carers have had because of PPE and having to pick up extra care. That is something that we need to look at very realistically, and I acknowledge the Minister's remarks about looking at that issue very specifically. It is important that we address that as a priority in the time ahead.

Members here today also indicated the unfair, if you like, impact of caring on particular groups. Women obviously are the first group that come to mind in relation to that, but I have concerns about carers of children who have had to deal with the issue of their schools being closed and all those additional supports or respite disappearing from them.

When I first came into the Assembly, I became Sinn Féin spokesperson for carers and well-being. I asked for that role to be created because I think that there is a wide recognition that, too often, we treat carers as an afterthought in many ways. We cannot see that continue because, as has been acknowledged by the Minister and by other Members who spoke today, there is a huge amount of people who are providing care in our society, and the entire health and social care system relies heavily on the input of those carers.

As Kellie Armstrong said, if we do not support them and they get burnt out, we are in serious trouble. There is absolutely no question about that. We need to engage with them in a realistic way. I acknowledge the Minister's point that there have been additional difficulties with COVID-19. However, additional opportunities have opened up. Many of us have seen all-party group meetings. I attended one Zoom meeting, in particular, at which there were 80 people. Therefore, other ways of engagement are being opened up that should be explored proactively.

I also want to address the issue of trusts' responsibility, which is central. In the first instance, they have a responsibility to identify carers. A number of months ago, I did a piece of work with the trusts on their register of carers. It is patchy and incomplete. They understand that they do not know fully who is providing care in the community. The Minister has acknowledged the additional carers who have come forward at this time. That is a significant and welcome piece of work, but there is much more to be done in that respect. We need to find out who out there is providing care and what we need to do to support them.

Almost every Member who has spoken in the debate has acknowledged the fact that caring, in itself and before COVID-19, has a huge impact on physical and mental health. Everyone has also acknowledged the impact of loneliness on carers across the board and the further difficulties with that at this time. There are also significant issues around poverty and the impact that being a carer has on career progression. In the longer term, we need to reinforce the rights of carers in legislation. At this time, the only legal right that a carer has is the right to an assessment. They do not even have the right to have any needs identified in that assessment met. At least, it is a start that unmet need is being captured. We also need to look at that issue.

Many Members mentioned the need to provide flexibility around direct payments and individual budgets where that suits a particular situation. We cannot overlook the essential need for the core services that have been stopped, including schooling, day care and respite services. Carers have been stressed out for weeks now, as was mentioned by a number of Members. In many cases, they are truly at the end of their tether. We need to reflect on that. I believe that the Minister understands that, and I welcome the moves that he has taken. However, as a matter of urgency, we need to see what practical steps we can take for the rebuilding of services. The Minister has mentioned difficulties with that. We need to engage with those difficulties robustly in order to try to prioritise that. It is one of the key issues that we are looking at now.

I commend Members for the debate. It is an important message to send out. While I recognise that people out there will be concerned that the motion is somehow tokenistic, it is important that we, at least, start to have that debate and move the practical situation forward. I commend the motion to the House.

Question put and agreed to. Resolved:

That this Assembly recognises the significant impact of COVID-19 on children and adults with a disability and the exceptional contribution of family carers further to the cessation of many statutory and non-statutory services; and calls on the Minister of Health to produce a detailed plan for the resumption of services.

Photo of Christopher Stalford Christopher Stalford DUP 5:45 pm, 7th July 2020

Members, as I am moving the next motion, I am, obviously, unable to chair the debate on it, although some might think that I would maybe try. I have been advised that Deputy Speaker Beggs is unavailable and is, therefore, also unable to chair the debate. Standing Order 9A(1) provides for those circumstances by requiring the sitting to be chaired by a temporary Speaker. The temporary Speaker is defined as:

"the member, present at the sitting, who has served the Assembly the longest number of days, and in the case of a tie, the oldest".

In accordance with Standing Order 9A(1), I have, therefore, asked Mr Jim Wells to take the Chair.

I invite Members to take their ease. I propose, by leave of the Assembly, to suspend the sitting —


Members, one moment. I propose to suspend the sitting until 6.00 pm in order to allow for change at the top Table. The next motion will be on ministerial breaches of the COVID-19 guidelines.

The sitting was suspended at 5.50 pm and resumed at 6.00 pm.

(The Temporary Speaker [Mr Wells] in the Chair)