Woman with learning disability left 'sofa surfing' due to broken social care system

Nova Cox was left sofa surfing between her mum and her sisters’ homes for over a year after she moved to Scotland in autumn 2020.

It would have been a difficult situation for any family, but Nova has a moderate learning disability and autism, which means she requires 24-hour care.

She had lived in her own flat in Liverpool, supported by a team of carers, for ten years before the pandemic. But Covid-19 restrictions, compounded by staffing issues, meant Nova wanted to move back to the Scottish Borders and be nearer family.

She was clear from the start what she wanted when she moved. “My own flat,” she says. “And to take care of my own time.”

The respite they were offering was just woefully inadequate. I would hate to put her in a position of having to go to the respite

But the family faced a battle to get Nova the support she needed, in the way she wanted it. She was offered a place in a care home for elderly people, despite only being 44. She was offered shared accommodation, which she’d tried before and didn’t like. She was even, at one point, offered a foster family.

When I ask Nova how this made her feel, she finds it hard to respond. With a bit of encouragement from her sister, Sarah, Nova says: “I was frustrated.”

Sarah, who took on guardianship of Nova, explains: “Nova does find it difficult to express her feelings, but we knew from her behaviour she was just really frustrated.

"She was telling us, ‘Why can’t I have my own flat? Why am I still living here with you?’ And she just couldn’t understand why they were refusing her that and, you know, when we were discussing with her about shared options, she said ‘no, I want my own flat with my own things and my own staff.’ That was very important.”

Sarah has spent much of the last year advocating for her sister. It’s been a long and exhausting process, from dealing with legal technicalities, to having to “repeat your story over and over again,” to taking care of Nova.

She was particularly aggrieved by the suggestion Nova could be placed with a foster family. “Nova has a family – why would she be fostered in somebody else’s family? And as I told them, that had been tried in Liverpool and the foster family had ended up dumping her at the council offices with a binbag of all her stuff, because they couldn’t cope with her.”

Nova’s experience in Liverpool was not being taken into account by Scottish services. Sarah says: “It got really tricky because England and Scotland just do not work together. It was really hard. Scotland wouldn’t even look at Nova until her feet had actually touched the ground, until she was here as a resident.”

This was when Nova began “sofa surfing between myself, my mum and my oldest sister,” Sarah says.

Nearly eight months after relocating to the Borders, Nova was finally offered a flat of her own, but wasn’t able to move in full-time until December. “It took a while because we were trying to build a staff team, so she couldn’t be here 24 hours,” says Sarah. “She was still between the family and here, but now we’ve finally got [a care team] in place.”

Nothing’s actually changed on the ground. It’s still the same fight

A team of five staff, including one of Nova’s other sisters, now look out for her round the clock. They help her with personal care, cooking and cleaning – as well as ensuring she leads an active life, something which the pandemic had prevented. “When Nova was in Liverpool, we didn’t know that she wasn’t having the stimulating life that she should. She was being cared for, basic care, but she wasn’t undertaking any activities or really going anywhere,” says Sarah.

She adds: “It was a good excuse. ‘It’s a pandemic. We can’t go anywhere. We can’t do anything.’ So yes, that was a shame. You’re busy all the time now, aren’t you, doing crafts and jigsaws?”

“I am busy,” Nova agrees.

I ask Nova if she’s happy with her new home. “Yeah, I’m so happy here.”

Sarah smiles. Nova’s answer confirms all her efforts were worth it. “Aw, that’s lovely,” she says. “She is really happy. Her behaviour, incidents of challenging behaviour, are really minimal compared to previously.”

But Sarah is only too aware of how fortunate she is. “I’ve got a really, really good employer who is more than willing for me to move my hours around – I work from home anyway – to be able to help care for Nova.

“A lot of people are just not going to be in that position, and the respite they were offering was just woefully inadequate. I would hate to put her in a position of having to go to the respite, because I know her behaviour would have really declined and it would have been such a struggle for her to cope.”

And while Nova is now able to live a happy, safe and comfortable life, Sarah says little has changed since Nova first left residential care at age 21. “My mum’s even said, because she was fighting this battle 20-odd years ago, nothing’s changed. It’s the same. For all the new initiatives and new things that have come in, the Keys to Life [Scotland’s learning disability strategy] and all the rest of it, nothing’s actually changed on the ground. It’s still the same fight.”

Sadly, Nova’s story is not uncommon.

Thousands of families across Scotland are left battling the system because of a lack of community care options.

A recent report from Enable Scotland found 1,011 adults with learning disabilities have been placed out-of-area, in some cases many miles from family. Even more distressingly, 67 people have been forced to live in hospitals. Some of these people have been there for more than a decade; one woman has lived in a hospital for over 60 years.

Jan Savage, director of Enable, is unequivocal about what this means in reality – they have been “institutionalised.”

And even for those who are offered community placements, it may not be what they want. Savage is particularly critical of the overuse of shared living options.

“Even since the publication of the Keys to Life, we have seen some health and social care partnerships move to commission multi-bed units. That is not the answer, but that is still happening and that is still considered by some to be an acceptable and desirable solution to this issue.

“We are institutionalising people by forcing them to live in places that they don’t want to live, and we will continue to institutionalise people if we see multi-bed residential units for people with learning disabilities to live together just because they are people who have learning disabilities. That’s still a very institutional mindset – and so there’s a real risk of that creeping back into society if we don’t call this out.”

Enable is campaigning for an end to multi-bed units, but the Scottish Government has so far refused. Asked directly in the Scottish Parliament, social care minister Kevin Stewart said the term was being used to suggest they were an “alternative to hospital” rather than a home. He said: “The use of the term ‘multi-bed units’ is not good: we know that people can share homes and thrive well.”

People with learning disabilities are met with attitudes that are stigmatised, that would start with ‘you can’t do this, you’re a person with learning disability’

The minister did accept it was vital that people with learning disabilities were listened to when it comes to their care, “so that folks can live as free and independent a life as possible”. But people who work in the area say this frequently does not happen.

This has led to some concerns about the forthcoming National Care Service and related reforms. Eddie McConnell, chief executive of Down’s Syndrome Scotland, explains: “To properly, meaningfully involve these people with these particular needs, it requires time and resources to do that in a good way. We’ve fed back to the government, and to others, our concern that the determination and the speed to bring about change might marginalise the views of people whose needs are profound.”

But McConnell says putting in the time and resource to speak to those with profound and complex needs will deliver clear benefits. “If you get it right for that part of the community, you’ll largely get it right in terms of quality and consistency for the rest of the community. But if you don’t get it right for that part of the community, then you’re building into the design of the new set of arrangements inconsistency and part-baked quality.”

However, he and others are hopeful that the National Care Service could be a turning point.

Savage says: “One of the critical big asks for the National Care Service is to make the vision of self-directed support, and the opportunity for individuals with learning disabilities to be able to direct their own social care support, a reality.

“We know that self-directed support in principle is phenomenal thing, but we also know that in practice there are significant challenges with implementation. We need scalable and replicable models of social care support to be available to all and for individuals to have genuine choice and control over the type and schedule and the people who come into their lives to help them live their lives for themselves.”

This, she says, will require a “national approach to investing in the social care systems”.

It’s a human rights scandal in Scotland, it’s hidden in plain sight, and we can’t wait five years for the National Care Service

Investment doesn’t just mean cash. Kenneth Fleming, external affairs lead at the Scottish Commission for People with Learning Disabilities (SCLD), says: “Self-directed support hasn’t always been supported by the necessary investment, but there’s also further challenges to this. This is not just about money, it is about attitude and it is about culture.

“One thing we hear is that, in health and social care partnerships throughout Scotland, supporters and people with learning disabilities are met with attitudes that are stigmatised, that would start with ‘you can’t do this, you’re a person with learning disability’.”

Social care should be a “springboard,” not a “safety net,” Fleming argues. “What social care has to be about is ensuring people are out, getting a job if they are capable and want to do a job, getting out and doing social clubs and activity, getting outside, going to bars and cafes because that’s fundamentally what life is about. Social care is not a box to be ticked. It’s not an end in itself. Social care needs to be a means to a better life.”

This point was picked up on the independent review of adult social care conducted by Derek Feeley. In his final report, published last February, Feeley recommended the NCS should mean: “Everyone in Scotland will get the social care support they need to live their lives as they choose and to be active citizens.”

In other words, social care is not just about looking after people; it is about supporting them to live independently. But the system is often framed by the former, largely because people tend to link care with elderly people in declining health.

Indeed, the Feeley review itself was sparked by what happened in older people’s care homes at the start of the pandemic. And while the deaths of thousands of older people is unacceptable, no less heartbreaking was the withdrawal of social care services from other vulnerable groups. This care has not fully returned.

Fleming says: “The message we still get from people with learning disabilities and their supporters is things are not back to where they were. They’re not back to pre-pandemic levels and it’s massively challenging for people, particularly day services…

"One of the things they tell us very consistently is it’s very, very hard for them as people, as human beings, to see football stadiums open again, to see restaurants open again, to see life return to full capacity in so many other areas, yet there is this distinct lack of catch-up in this process.

"The Scottish Government did issue guidance, I think it was last summer, about how to get these services up. We still don’t have them, so we would say we need that clear action, supported by some clear milestones, about how we get those day services back.”

It’s just one example of the wider inequalities faced by the community during the pandemic, from inappropriate use of ‘Do Not Resuscitate’ notices during the first wave to a lack of data meaning that, even though people with learning disabilities were put on the priority list for vaccination, they were difficult to find.

Social care is not a box to be ticked. It’s not an end in itself. Social care needs to be a means to a better life

But McConnell is hopeful that the pandemic can be used as a catalyst for change – if governments face the inequality head on. He says: “As we plan to arrive in a new set of arrangements in 2026, we have to deal with that inequality. We need to have these conversations, and not conversations that are about blaming people or assigning fault or stuff like that, just honest conversations about what went wrong in the past two years.

“If we don’t have those honest conversations, then there’s a danger that whatever comes into being in 2026 actually bakes in that inequality rather than properly addressing it.”

Now is a good time to take stock of progress for the learning disability community because of two other major changes planned by the Scottish Government: a Learning Disability, Autism and Neurodiversity Bill, and a Commissioner to help the community uphold its rights.

“The Commissioner will have to have teeth and it will be really important to show that the powers of the Commissioner and the role is actually really well enshrined in the legislation coming forward,” says McConnell.

Savage agrees. “There is a risk, always, that that could be a symbolic appointment and what needs to be in place to avoid that being the case is that bill of rights that sits underneath it and actually informs the powers that this Commissioner will have,” she says. “One of the critical things that will make the difference there is the removal of people with learning disabilities and autism from the definition of mental disorder that currently exists within the Mental Health Act.”

The bill must, Savage adds, become “something that genuinely does put rights into reality, but critically introduces accountability and governance into the system around how people with learning disabilities are living their lives and how well their rights to accessing the same healthcare, housing, social care, education, employment, as everyone else is actually working in reality.”

This is the missing link after the publication of the Keys to Life strategy. While welcomed at the time, the impact it has made over the last nine years is unclear. The SCLD was heavily involved in creating the strategy, but Fleming says: “The Keys to Life was rooted in a transformative vision, for transforming the lives of people with learning disabilities, and I don’t think anyone would say it’s been truly transformative.”

Partly, this is due to a lack of data about people with learning disabilities, so changes are difficult to quantify. But a report by the Fraser of Allander Institute published last year said cuts to social care, the complexity of self-direct support and the pandemic had limited the ambitions set out in the Keys to Life.

And while the aspirations remain just aspirations, more needs to be done to support the community – not just on social care, but how that care improves lives.

Savage says that until social care is overhauled and community care is available everywhere, human rights will continue to be violated. She says: “It’s a human rights scandal in Scotland, it’s hidden in plain sight, and we can’t wait five years for the National Care Service to resolve that. And we don’t need to – there are interventions that can be made now to stop this.”