Hansard

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.