Meeting of the Parliament (Hybrid)

Meeting date: Tuesday, March 16, 2021

Official Report 1141KB pdf

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People with Learning Disabilities (Support during Pandemic)

The final item of business is a members’ business debate on motion S5M-23746, in the name of Jackie Baillie, on support for people with learning disabilities during the Covid-19 pandemic. The debate will be concluded without any question being put.

Motion debated,

That the Parliament notes with concern issues relating to support for people who have learning disabilities in the COVID-19 pandemic; believes that sufficient data on infection and mortality rates of people who have learning disabilities has not been made available despite repeated calls for this to be collated and published, and given that similar data exists for England; understands that, in its recent research on general mortality rates for people who have learning disabilities, the Scottish Learning Disabilities Observatory found that people who have a learning disability die 20 years younger than their peers, and children who have a learning disability are 12 times more likely to die than their peers; understands that routine COVID-19 testing for staff who support people who have learning disabilities outwith care home settings remains unavailable; further notes concerns that it understands have been raised by the Mental Welfare Commission over a lack of clarity in guardian awareness of do-not-resuscitate forms, given further evidence from England suggesting a rise in blanket do-not-resuscitate forms for people who have learning disabilities, and notes the belief that people who have a learning disability in Dumbarton and across Scotland must be treated as a priority group in terms of the COVID-19 vaccination programme in order to support and protect this group of citizens and their family carers.

19:24  

I am grateful that my motion has made it to the chamber before Parliament rises and we enter the election period. Although we will all be robust in arguing about policies and the clash of debate will be vigorous, there are many areas on which we can agree. Concern for people with learning disabilities is definitely one of those areas.

The issues to be discussed tonight are hugely important. It is the duty of every one of us to give a voice to those who struggle to be heard, and there are few who struggle more to be heard than those living with learning disabilities.

Members will be aware that I am the convener of the cross-party group on learning disability. I work closely with organisations such as Enable Scotland and others to improve the position of those across Scotland who have learning disabilities. I am assisted in that by Joan McAlpine, who has been tenacious in her pursuit of Covid vaccinations for people with learning disabilities. I thank her for that, and for her success in ensuring that they are included in priority group 6 for vaccination.

It is important that the voices of those with learning disabilities are heard in the chamber. The testimony of one Enable Scotland member who lives with a learning disability sums up the extent to which they have been let down during the pandemic. This is what they said:

“I feel like we have been the forgotten people of the pandemic. If it hadn’t been for the online groups Enable Scotland put on, I would have had nobody.”

There are as many as 175,000 people in Scotland who have learning disabilities, yet only 23,500 adults with learning disabilities are known to local authorities. That means that the majority do not receive any formal social care or support. Many who do receive support have had their care packages cut during the pandemic. It inevitably falls to family care givers to provide the vast majority of support to those with learning disabilities. It will be news to no one that the pandemic has made it almost impossible for them to provide care.

The issue of access to care was reflected in a report from the Fraser of Allander institute that was published last month, which said:

“The Covid-19 pandemic has been detrimental to the support relied upon by people with learning disabilities. Some of this has been the result of restrictions on face to face contact, and given the heightened risks that people with learning disabilities face, in many cases this was unavoidable. However, there can be no doubt about the harm this has had on people and their families.”

The heightened risk that Covid-19 presents to people with learning disabilities was also highlighted in distressing data that was published by the Scottish Learning Disabilities Observatory. People in Scotland with learning disabilities are twice as likely to test positive for Covid-19 and three times as likely to die from the virus as those without a learning disability. Despite those harrowing statistics, it has proved near impossible for staff who work with people who have learning disabilities outwith care home settings to be seen as a priority for the vaccine. Staff have had to choose between withdrawing care or putting those that they care for at risk.

The past year has not only presented a serious threat to the physical health of people with learning disabilities; it has also had a huge impact on their mental wellbeing. Enable Scotland launched a wellbeing helpline during the pandemic for individuals who have a learning disability. It has taken over 500 calls to date and that number rises every week. However, beyond forensic mental health services, Scotland has no specialist therapeutic service designed to overcome the mental health challenges that the pandemic presents for people who have a learning disability.

I am sure that colleagues from across Parliament will join me in calling for more investment in mental health services, particularly specialist services for children and adults with a learning disability, as we move out of the pandemic. We spend only about 8 per cent of our health service budget on mental health services, whereas in England and Wales that figure is 11 per cent. It is clear that there is room for us to do better.

I want to touch on another issue that has caused additional fear and anxiety for people with learning disabilities and their loved ones, during what is already an extremely worrying time. In April 2020, during the first wave of the pandemic, members of the cross-party group on learning disability approached the Scottish Government with concerns about the use of “Do not resuscitate” forms. At the time, members were reassured that disability, including learning disability, alone is never a reason for the completion of a DNR form. The Scottish Government claimed that it was updating clinical guidance, yet the lived experience of people with learning disabilities and their families shows that there is still a great deal of confusion surrounding DNR guidance and protocol. It is vital that the guidance is clarified and that there is no room for confusion. The Government must urgently ramp up its reporting and monitoring of the use of such orders for people who have a learning disability, during the Covid-19 pandemic.

We need an action plan that ensures that professionals, families and—crucially—people who have a learning disability have accessible information about the guidance and what it means for them. I hope that all those issues will be considered in the course of the public inquiry into Covid and its impact on different people in our community.

I want to be clear that Covid-19 is not the start and end of the barriers that those with learning disabilities face but has merely added to the daily barriers that the community has to overcome. They experience inequality in many areas of their daily lives. The pandemic is not responsible for their struggle, but it has made a bad situation even worse.

It is the responsibility of us all to improve the day-to-day lives of those with a learning disability now and in the future. There is an opportunity for us to do that. Let us commit to the creation of a commissioner for people with learning disabilities. Let us make it our ambition that the next Parliament makes early progress to ensure that their human rights are at the centre of everything that we do.

19:32  

I congratulate Jackie Baillie on securing the debate. I have enjoyed working with her on the cross-party group on learning disability and I commend her work in leading the group. I thank everyone involved in the cross-party group, including the secretariat, Enable Scotland, for the fantastic work that they do.

Since the beginning of the pandemic, I have been raising the needs of people with learning disabilities and I am pleased that progress has been made with regard to vaccination and testing. However, I want to raise the issue of testing for young people. Just today, I received a letter from the father of a 17-year-old girl with Down’s syndrome, from my region, who was told to shield but has not been vaccinated. Despite repeated calls to both the helpline and her general practitioner, her dad has no information on when she will get the vaccine. People with Down’s syndrome were part of the high-priority group 4. I would appreciate any guidance that the minister can offer on that.

As well as being deputy convener of the CPG, I am the legal guardian of my sister, who has Down’s syndrome and who does not have the capacity to make decisions for herself. That shapes how I look at the issues, because it is the people who cannot speak up for their own needs who have been hurt most by the pandemic. People without capacity often rely on their family members, and it is important that their carers and family members are listened to.

One issue that particularly affects that group is the loss of day services, particularly building-based day services. For many of those who use the services, it is like going to work or school, but it also their community—it brings routine, stimulation, safety and friendship. Before the second lockdown, many day services across Scotland were still not operating, when pubs, schools, restaurants and sport were up and running. The replacements for the day services that were offered to people—colouring packs, chats on Zoom if they were lucky—were completely inadequate. That has had a devastating effect on people. I endorse what the briefing from the Royal College of Psychiatrists in Scotland says about the need for better mental health services that are designed for people with learning disabilities as we come out of the pandemic.

Families of learning disabled people who use day services in local authority areas around Scotland have asked me where the day service workers went, particularly if the services were run by local authorities. Many such workers have been asked to stay at home or have been redeployed to deliver other council services.

I know of a supported living facility that houses nine people, most of whom went to a day centre about four times a week. That service has been absent for a year; the replacement service offers about four hours a week, if people are lucky. No extra resource has been provided to that supported living facility, and that situation is replicated around Scotland.

I have made the point before that many parents of such people feel that a national care service in which local authorities control services for learning disabled people will not work. I have spoken to third sector workers who point out that the services that they have offered learning disabled people during lockdown—particularly when it was eased last summer—have been far more creative and imaginative, whereas councils have failed to come up with alternatives to the closed adult resource services.

In our previous debate on the subject, the minister talked about the Scottish Government working towards a transformation plan. She said in closing that she was developing it in partnership with the Convention of Scottish Local Authorities and that it would take a human rights-based approach. That will concern some families who are in despair at the loss of day services, because they are concerned that council social work departments will use the opportunity to further destroy such services and particularly building-based day services. The families’ experience is that the redesign of services means the destruction of day services, which are not fashionable.

I will quote one typical parent from East Kilbride, who is the father of a woman in her 30s. She absolutely loved attending the Murray Owen centre, which he believes is under threat. He said:

“I know there are people in positions of power and influence who would in effect close the day centre model to our learning disabled community. A senior social worker actually said to me at a review meeting 12 years ago, when we strove to increase our daughter’s package from two days to four, ‘Is that all you want for her—to be stuck in a day centre?’ We were horrified by her question, which was asked in front of members of staff who’d transformed our daughter from being a shrinking violet with zero confidence into the confident, sociable, happy and far more able young woman she is today. Such offence and disrespect towards us and towards the staff of the centre necessitated a firm rebuke.”

I hope that, in looking at future services for young and middle-aged adults who attend day services and building-based day services, we will listen to all groups, including carers. I appreciate the fact that the minister is consulting People First (Scotland) and other organisations that allow people to speak for themselves, but the needs of people with mild disabilities, whose focus is—understandably—on getting into work, taking an independent approach and achieving total equality are very different from those of people with more severe disabilities.

It is important to include everybody. Self-directed support is great for some people but not for everyone. For the people who have the greatest needs, there is not the breadth of facilities to purchase through self-directed support. I hope that the minister will keep that in mind in her discussions about the future of services.

19:39  

I thank Jackie Baillie for securing the debate. I acknowledge the hard work that she has done as the convener of the cross-party group on learning disability to raise many such issues, along with Joan McAlpine as the deputy convener. It has been my privilege to be a member of that group and to watch the work that has been done.

It is an important debate that we are having this evening, and, in the time before me, I will make three brief points, which have been made by others and, I am sure, will be made by others still as we go on in the debate, but it is important that they are heard and that we respond to them collectively as a Parliament.

I thank Enable Scotland and others for providing briefing papers for tonight’s debate. As Enable Scotland points out, 31 per cent of people with learning difficulties are looked after by a family carer, and, during this crisis, those families’ hours of support have been cut. Perhaps that was understandable initially, but there is a big concern that the lost hours will never be brought back or will be used in a different way. It is vital that all parties commit to making sure that those hours of care within a family situation are restored as soon as they can be. Families have been put under immense pressure over the past 12 months, and caring for someone adds to that pressure. That should be recognised, and local authorities and the Scottish Government need to make sure that help is available going forward.

The second issue that I will talk about is the support that people have within the community. As Joan McAlpine pointed out towards the end of her speech, there is a concern in her constituency—as there is in my region—that some of the community projects that people have been going to for many years are going to be cut or got rid of completely. There is a view among some people that those community centres and places of work and leisure are no longer appropriate and that all care should take place within the home or in other areas of the community. Clearly, there needs to be a mixed economy, but, having spoken to a number of third sector charities in the Lothian region, I am genuinely concerned that those centres are to be closed or that their funding is to be cut in such a way that they will no longer be viable. I have spoken to people who have different learning difficulties, and that is their community—it is often their workplace, the place where they get support and the only place where they can go during the week. To close those places down would be short-sighted and would affect the most vulnerable in our society. I hope that COSLA, the Scottish Government and all local authorities will carefully consider the decisions that they make over the next few years.

Finally, in this pandemic, the area that has caused me most concern for those with learning difficulties has been some doctors’ use of “do not resuscitate” orders, which I have come across. I understand that the Scottish Government wants to clarify the situation and make sure that the appropriate guidelines are in place, and I hope that, whatever inquiry takes place afterwards, that will be one of the key issues. We cannot have families worried about what is going to happen to their loved ones if they go into hospital. We cannot go back to the situation that, unfortunately, has occurred in the past 12 months, whereby a doctor thinks that they know best and there is no consultation with family members. I am sure that, across different parties, there is consensus on that, but we must work together to make sure that doctors and others in the medical profession understand the guidelines and that they follow them closely.

I thank Jackie Baillie not only for bringing forward the debate tonight, but for all the work that she and her cross-party group have done in the past five years.

I call Shona Robison.

[Inaudible.]

We are not hearing you, Ms Robison. Will you try again?

[Inaudible.]

I am afraid that we are still not hearing you, so I will call Maurice Corry and then come back to you in a couple of minutes.

19:45  

Thank you very much for allowing me to speak in the debate, Presiding Officer.

I thank Jackie Baillie for her unstinting support for the subject of this debate and for the learning disability sector. I know that she does an enormous amount of work, and I commend her for that.

I am, luckily, a member of the cross-party group on dyslexia. There are similar characteristics in that area, and I have a deep interest in the subject.

I am really concerned that local authorities and education authorities around Scotland do not understand the need for learning disability support in further and higher education. Cases have been reported to me in which learning support and disability support teachers or lecturers have not been replaced when they have retired. That is a real concern, and I hope that the minister will pick up on that.

When I visited prisons as the shadow spokesman for community safety, I saw the amount of rehabilitation, learning support and learning disabilities work that was being done to help prisoners. Sadly, a high percentage of people in prison suffer from learning disabilities and have not received support for that in primary or secondary education. We also have an issue in further and higher education in Scotland that I want to bring to attention in this debate. I hope that the minister will pick it up.

In concluding, I thank Jackie Baillie for bringing this members’ business debate to Parliament. The issue is very important. We often miss talent that is out there, but there can be a little support, and parents can be helped to understand how they can support their children and their family. However, they also need to be supported by the authorities in Scotland, and I commend that to the minister.

19:47  

Can you hear me now, Presiding Officer?

Yes, we can hear you loud and clear.

I thank Jackie Baillie for bringing the debate to Parliament. The motion raises a number of important issues.

We have all been affected by Covid-19, but, as others have said, it is important to recognise that some will have been affected more than others. Research by the Fraser of Allander institute noted that

“people with learning disabilities are far more likely to suffer with underlying health conditions and multiple comorbidities, which are risk factors for the severe health outcomes associated with COVID-19.”

The institute also noted that, given that information, it is safe to assume that those who suffer from learning disabilities will have been adversely impacted by the pandemic.

The Government has taken—and is taking—a number of welcome steps to address that and other concerns. Only last week, the chief medical officer confirmed the First Minister’s commitment that people with mild or moderate learning disabilities would be vaccinated as part of priority group 6, whereas that group previously included only individuals with cerebral palsy, severe or profound learning disabilities or Down’s syndrome. The inclusion of those with mild or moderate learning disabilities is certainly welcome.

The First Minister and the chief medical officer have also made it clear that nobody in any circumstances should be pushed into signing “do not resuscitate” forms. That is very important, and Jackie Baillie was right to raise concerns about that.

Today, the Scottish Government published its research report entitled “COVID-19 and Disabled People in Scotland—Health, Social and Economic Harms”, which looks at Covid-19 mortality rates and people with learning disabilities. The Scottish Learning Disabilities Observatory research that is quoted in the report shows that, overall, people in the learning disabilities population are more than three times more likely to die of Covid-19 than people in the general population.

In response to the report’s findings, the Government has committed to publishing, in March, data on Covid-19 deaths in Scotland by disability status. Perhaps the minister will use the opportunity that today’s debate provides to update us on that welcome commitment and to talk about steps that the Government is taking to protect people with learning disabilities from Covid-19 and the associated impacts on their lives. The steps that have been taken so far to recognise and respond to the concerns of people with learning disabilities have been welcomed across the board and demonstrate a sincere determination to do everything possible to understand and limit the adverse effects of the pandemic on our most vulnerable groups.

That is not to say that we cannot do more. The Scottish Government has said that it will hold an inquiry into how it dealt with the pandemic, to learn lessons and to inform how it reacts to future public health emergencies. I urge the Government, in its inquiry, to listen to the voices of groups and individuals who represent the concerns of people with learning disabilities and to put those voices at the heart of any future strategy. I understand that many groups that represent people with learning disabilities have concerns about not just the direct health impact but the impact of emergency legislation on people’s human rights, the reduction in outside support and the financial consequences of the pandemic. I urge them to make their voices heard in a future inquiry.

I hope that a clearer road map out of the current situation is emerging as a result of the First Minister’s announcements today, so that we can all look to the future with renewed optimism.

19:51  

I thank Jackie Baillie for providing us with a further opportunity, following last week’s members’ business debate, to discuss the experiences of people with learning disabilities during the pandemic.

I am acutely aware of the pandemic’s impact on people with learning disabilities. Our regular meetings with key charities and People First (Scotland) have allowed us to respond quickly and provide additional support and funding. For example, we provided £56,000 to a range of learning disability organisations to help to reduce social isolation in winter, £115,000 to the Profound and Multiple Impairment Service—PAMIS—and Down’s Syndrome Scotland to support unpaid carers and £30,000 to Down’s Syndrome Scotland and Enable to support the siblings and parents of people with Down’s syndrome and to provide vaccination support for people with learning disabilities. I thank the organisations with which we are working for their flexibility and dedication.

In her motion, Jackie Baillie mentioned the need for Covid-specific

“data on infection and mortality rates of people who have learning disabilities”.

On 4 February, we announced that the Scottish Learning Disabilities Observatory had published a high-level summary of its Covid data. A pre-print of the full report was made available on 9 February. The data showed that people with learning disabilities are more than three times more likely to die from Covid-19 than people who have no learning disability.

Any death is regrettable, as it is the loss of a unique and irreplaceable individual, who is mourned by many. We have agreed with the Scottish Learning Disabilities Observatory that it should continue to collect and analyse data for the duration of the pandemic.

Ms Baillie’s motion also mentions the wider research that the Scottish Government commissioned from the observatory last year on the health of children and adults with learning disabilities, which confirmed that there is still a 20-year disparity in life expectancy for adults with learning disabilities, many of whom die in their early 50s, often due to preventable causes.

For children, the position is more complicated and further work is required. Last year, the observatory hosted a successful round-table discussion with leading clinicians to explore the evidence and agree actions. A round-table on adults will take place next month.

Under our proposed new plan for learning disabilities and autism, a priority is to make further progress on health outcomes. There is no single solution. It will take a range of co-ordinated actions, including further training of the health and social care workforce and work with primary care on annual health checks. The latter is currently being piloted in Aberdeen, and is led by learning disability nurses who work with the local practice.

We are determined to build support to tackle health inequalities as a fundamental human right. That brings me to the concerns regarding the awareness and use of “Do not resuscitate” forms for people with a learning disability, as mentioned by several participants in the debate. I make it absolutely clear that the Scottish Government values the lives of people with a learning disability, as we do any other life. Covid-19 has brought no change to our advice on the use of “Do not attempt cardiopulmonary resuscitation” forms. A learning disability should never be a sole reason for considering whether someone would benefit from CPR. Our document, “COVID-19 guidance: ethical advice and support framework”, which was published on 29 July 2020, emphasises that point and makes clear that health conditions or disabilities that are unrelated to a person’s chance of benefiting from treatment must not be part of a clinician’s decision making regarding access to treatment.

The motion picks up on the issue of prioritising vaccinations for people with a learning disability, and routine Covid testing for staff who are supporting people outwith care home settings. On vaccinations, members are now aware that, on 22 February, the First Minister announced that, in Scotland, in consultation with the chief medical officer, we will vaccinate everyone with a learning disability in group 6. That is currently taking place. We have written to national health service boards and health and social care partnerships to underline the key role of learning disability nurses in that programme.

On staff testing outwith care homes, we have made significant progress. We will soon be expanding the availability of Covid-19 testing to front-line staff in learning disability settings and a range of other settings.

In the debate, both Shona Robison and Jackie Baillie mentioned the Fraser of Allander institute report on employment opportunities for people with learning disabilities, which was published yesterday. The members may be interested to know that, last week, I met Jamie Hepburn, the Minister for Business, Fair Work and Skills, on that very issue. I asked for a focus on improvement in employment outcomes for people with learning disabilities, improvement in data collection and capacity building with employers. I assure members in the chamber that I am committed to working across ministerial portfolios to improve life chances and employment opportunities for people with learning disabilities.

Joan McAlpine spoke about a concern that has been raised with her by a constituent. The Scottish Government has funded Down’s Syndrome Scotland to support families with shielding and vaccination queries; however, if Ms McAlpine wants to write to me regarding the specific details of her constituent, I will certainly endeavour to help her.

There was also mention of the commissioner for learning disability and autism. The towards transformation plan that the Scottish Government is working on with the Convention of Scottish Local Authorities will explore further the proposals for a commission or commissioner to protect people’s rights. Over recent weeks, I have met the three key organisations that have called for a commissioner. Today, I met autistic people’s organisations and individuals with learning disability and autism to discuss the issue, and we will continue those conversations.

As I have just referenced, we have been working with COSLA on the towards transformation plan, which pulls together our learning from the experiences of the pandemic and the input of key stakeholders, autistic people and people with learning disabilities. The plan takes a human rights approach. We do not yet know the full legacy and impact of the pandemic, but we are able to use what we know now to take some priority actions. Those priorities include improving physical and mental health; progressing the Morgan report and action plan for additional support needs in schools; a review of supported employment; and, following the publication in February of the “Independent Review of Adult Social Care”, our announcement about a new community living change fund of £20 million, which will deliver a redesign of services for people with a learning disability.

I welcome the publication of the report of the human rights task force. Its recommendations will result in a world-leading framework that, for the first time in Scotland, brings together internationally recognised human rights in one place.

As discussed last week, we have committed to explore further the proposals around a commission or commissioner to help to protect people’s rights. This morning, I had a valuable experience listening to people with lived experience, which will certainly play into our thinking as the Scottish Government. Councillor Stuart Currie from COSLA was also in attendance at the meeting.

I thank Jackie Baillie for the motion, and for the opportunity to have the debate. I also thank all members across the chamber for their contributions.

Thank you. That concludes the debate on support for people with learning disabilities during the Covid-19 pandemic.

Meeting closed at 20:00.