Hansard

I congratulate Alexander Burnett on securing the debate. As the vice-convener of the cross-party group on learning disability, I am delighted to support calls for a commissioner for learning disability and autism. We have made progress in Scotland, with keys to life and the Scottish strategy on autism, but there is much more to do, as Alexander Burnett outlined in relation to the shocking examples that he just gave with regard to autism. My remarks will be about learning disability.

Over the course of the pandemic, I have raised concerns about the higher mortality rate of learning disabled people, but care workers for learning disabled people received routine testing only this year and all learning disabled people got prioritised for the vaccine only last week. I hope that a commissioner would have pushed for that earlier.

Keys to life acknowledges the poor health outcomes and the need for reasonable adjustments for people with learning disabilities, but those do not always happen. It also recommends the provision of better data to identify people with learning disabilities. We now know that that is not in place, which will make it harder to reach that community with the vaccine. The understandable desire to ensure that people with learning disabilities are treated as equal citizens has perhaps created a fear of medicalising them inappropriately, but that ignores their vulnerability, and I hope that lessons can be learned by any future commissioner.

Another issue that I have raised, which I hope that a commissioner would address, is the loss of support services during the pandemic—in particular, building-based day services. That has happened despite the Cabinet Secretary for Health and Sport repeatedly stating that the health and social care partnerships would be fully reimbursed for providing those services, as well as writing to the heads of social work to tell them that day services are important. My motion on that subject received cross-party support, and I thank all those who signed it, but, unfortunately, it did not secure debate time. Even when shops, pubs, schools and other services reopened last summer, adult day services remained closed or severely restricted. Alternatives, including those using self-directed support, were often poor—perhaps a walk for a few hours a week around a shopping centre, colouring-in packs or a chat on an iPad for a couple of hours.

Several families have told me that health and social care partnerships were using the pandemic as an excuse to close those services altogether. The father of a young adult who attended the Murray Owen centre in East Kilbride told me—as did others—how much his daughter was suffering from the disruption to her life that the closure of the centre has caused. He said that it offered stimulation through a variety of activities, professional support and, perhaps most important, a caring community. That has all been snatched away. Her dad told me that she wants to be with her friends but that her views are ignored.

Glasgow and North Lanarkshire have already closed day service centres, and Inverclyde and South Lanarkshire are currently redesigning them. The dad to whom I spoke believes that those decisions are driven by an ideological antipathy to day services, which ignores the views of those who use and love the services. The services are not for everyone, but, if we are in favour of personalised care, we need to listen to people. I hope that any commissioner who is appointed will understand that the community of people with learning disabilities and autism is as varied in its needs as society at large and that all individuals must be listened to, even when some of them want to use services that do not correspond to current fashions.

Although I support the creation of the role of commissioner, I have concerns about demands for the full incorporation into Scots law of the United Nations Convention on the Rights of Persons with Disabilities. That follows my meeting with the Royal College of Psychiatrists and LEAD Scotland, which highlighted the unintended consequences of removing the concept of incapacity. Doing so could end guardianship, remove caring families from decisions that affect their loved ones, resulting in worse health outcomes, and put power in the hands of the very authorities that have presided over poor outcomes for years. The Royal College of Psychiatrists says that that is why the convention has not been fully adopted by any other jurisdiction in the world, and it is concerned about how consultations around mental health and incapacity in Scotland have been conducted.

As someone who has direct family experience of someone with a learning disability, I back the campaign for a commissioner. However, I hope that any future commissioner, and the minister, will accept that vulnerable people face real life challenges and must come ahead of abstract concepts that could make their lives even more difficult.