Navigating life with a child who has a learning disability can be difficult when you don’t have the right support. Lauren Nicolle talks to Gail Hanrahan, CEO and project leader of the Oxfordshire Family Support Network (Oxfsn), about how the charity helps to inform, inspire and empower family carers.
The Oxfordshire Family Support Network (Oxfsn) is a not-for-profit organisation run by and for family carers of people with learning disabilities. Gail Hanrahan set up Oxfsn in 2007, alongside another parent who also has a child with a learning disability. Their aim was to develop a network of support for family carers at a local level, providing parents with the tools and skills to navigate the world of learning disability.
What drove the start-up of Oxfsn?
Gail’s son, Guy, who will be turning 31 next month, has a profound learning disability and a rare syndrome. Gail explains that when Guy was young, there was very limited information and guidance available, most of which was difficult to relate to their own experience. Gail suspected that she wasn’t the only parent who felt like this and didn’t want other families to feel as lost in the system as she did, which led to the start-up of Oxfsn.
At the time of start-up, Guy was in his teens, not far from his 18th birthday. At 18, legislation and health and social care services change for people with learning disabilities and many families can feel as lost and overwhelmed by the system as they did when their child was first diagnosed. It is also a time where many families are preparing for their child to move out of home, in order to gain some independence. This is often complicated and stressful for both child and parent, as parents desperately want the best possible living conditions for their son or daughter.
Each family and person with a learning disability is unique and as such, will have different needs and requirements. Oxfsn tries to make the transition into adulthood as easy as possible, providing parents with information and person-centred support to help them through what can be a very daunting period.
By families, for families
“Everything we do at Oxfsn is rooted in person-centred thinking, approaches and planning and that's where the focus of all this came from. It’s the best and only way we should be working with people, across their whole life. But it’s particularly useful in times of huge change, like moving into adulthood. We shouldn’t be focusing on getting a service, we should be focusing on getting the person a good life,” Gail explains.
Gail goes on to say that there is a lot of scare-mongering and misinformation around the rights of learning-disabled people once they reach the age of 18. Horror stories are regularly shared on news platforms, telling of people with learning disabilities receiving poor care or trapped in ATUs for years of their life. Although these stories are extremely important and absolutely have to be shared, Gail emphasises that the good examples of care should also be heard. This balance is important, as fear that all adult support is like this can paralyse families into non-action.
For this reason, Oxfsn aim to provide a balanced view of the care system, so that family carers can feel confident that their child can have a good life away from home. Guy, who lives in supported living just a five-minute walk away from Gail’s home, is a perfect example of this. She said: “Up until this year (due to the pandemic), he has had the most brilliant, active, busy life and great support. And you know, it is possible, and we want other parents and carers out there to know that and how to go about making sure it happens.”
What should good care look like?
Gail also co-chaired her local Transforming Care board, a programme which sought to halve the number of people in institutional care by 2019. This target has still not been met, and I was interested to ask Gail why she thinks this may be.
Gail believes that people should be supported in the community, wherever possible, rather than being sent to inpatient units. However, currently, the only alternative for a learning-disabled person who is struggling within the community is treatment in an ATU. And although treatment facilities are sometimes necessary, the way they are currently operating isn’t working.
Gail says that ATUs, in many cases, have become places to warehouse people perceived as ‘too challenging’. These people are admitted into the mental health system, which uses the medical model of disability and is intent on ‘fixing’ people and making them better. “Learning disability and autism can’t be ‘fixed', they are who they are. Their behaviours that challenge the system are often communication or distress behaviours, which are then made worse by the very system that purports to be helping them,” Gail explains.
Furthermore, people with learning disabilities are being kept in treatment centres for far too long and often a long way from their families. In Gail’s view, where treatment is absolutely necessary, it must be short term and the facility needs to be close to home. At the moment, she explains, there is no incentive to get people out of ATUs, since many inpatient settings are owned by large businesses which profit from keeping people in for longer than they need to be.
Gail also stresses that we must explore why so many young adults with learning disabilities are reaching crisis point in their teenage years or early twenties. She emphasises the need for preventative measures and extra support in childhood, proposing that this (as well as better alternative methods of care) would make parents less afraid of their child’s transition into adulthood.
Ensuring older carers get the support they need
This fear, which appears to be felt broadly across the learning disability community, is particularly evident in older carers. For this reason, Oxfsn began their Em-bold-en programme, which sought to empower older family carers and ensure plans were in place for their child when they were no longer around. “The aim was to embolden those family carers to, to support them, to challenge decision makers, to bring them together with commissioners and people that made those decisions locally, to hear their voices, because we felt very much that they were the hidden carers,” explained Gail.
The impact of Covid on the older generation has bought this issue into sharp focus; with many carers who had previously resisted care plans now realising their importance. Gail hopes the programme will mean many people with learning disabilities avoid institutionalised care and instead live happily in the community, like they always have, emphasising that good forward planning is essential to avoid people simply being ‘placed’ in crisis provision.
Before the Em-bold-en programme, there was little to no data on older cares. The programme discovered that there were 60 people with a learning disability, in Oxfordshire alone, living with a carer over the age of 80. The figures represent just those who are known to social services, so there is likely to be more as well as countless additional cases across the country.
The programme has shone a light on older carers, ensuring they are not forgotten and has influenced other counties to set up similar initiatives. In this way, the programme has made sure there is a care plan in place for hundreds of people with learning disabilities, even when have no relatives left. But, there is still much more to do. Oxfsn are currently seeking funding for phase two of the project, which will ensure there is a plan in place for those with a learning disability who are still living with elderly parents.
What needs to change to improve care in the UK?
Although much improvement has been made, there is still a long way to go. Gail explains: “The crux of the problem is chronically underfunded social care, and yet thousands and thousands of pounds are spent when people with learning disabilities have a crisis. The fact that people end up in ATUs at such a cost to the public purse is disgraceful to me, and that on its own is bad enough. But, the fact that they are torturing, abusing and doing untold damage to people who have already been damaged by the system over a number of years, in this society, is just abhorrent.”
It is clear that the current system is not working and something has to change. Oxfsn are currently pushing for a “crisis crash pad” model of care, which gives learning-disabled people a respite place when (or if) they need it, close to home, for a short period of time. Gail says that this will remove the need for ‘sectioning’ and will stop people getting stuck in the mental health system. “We have to somehow stop this vicious circle and prevent people from bouncing in and out of the mental health system every time support in the community struggles or fails,” she said.
Oxfsn are a gleaming example of an organisation which are making hugely positive change at a local level. But even with groups such as Oxfsn doing their utmost to improve the lives of family cares, change is far too slow. It seems that it is senior authorities which need to be doing more, by creating community projects and alternative methods of care. Only then, will the care system in the UK be transformed and family carers feel confident that their child can have a good life during adulthood and beyond.