Meeting of the Parliament (Hybrid) 16 March 2021
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.
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