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Long read: Supported Living & COVID-19

Policy & Communications Officer Hefin Rees Edwards discusses the Supported Living model for people with learning disabilities in Wales and the impact of COVID-19 health guidance on them, as well as the organisations and staff working in this sector. Rick Wilson of Community Lives Consortium provides vital input as an expert voice from within the sector.

 

Introduction

Since starting at Cymorth six months ago, some of my time has been spent working with our members who are providers of supported living for people with learning disabilities. Over the last three months, they have been facing the challenges of COVID-19. The pandemic has meant providers and their staff have had to make big changes to keep their services and the people they support safe.

The Supported Living model

In March 2019, the sector came together and reiterated its commitment to the Supported Living model, which is a ‘person-centred’ approach, offering choice and control to individuals using services, for the purpose of promoting their independence in order for them to have a good life (1).

This traditionally has been achieved through small group homes of 4-5 people living in ordinary houses in the community, although it is recognised that this isn’t always the right approach for everyone.

My Auntie Margaret, who passed away a few years ago, had Down’s Syndrome and lived in a setting in Southend, in England, that followed the principles of this model. Our family used to visit her regularly in her supported residence, a house in town where she lived with other residents and support staff.

People can take a paternalistic attitude towards people with learning disabilities, and may inadvertently deny them their agency and independence. Auntie Margaret certainly had no problem doing things her way; she regularly took the bus by herself to Wales and came to stay with my family several times.

She lived happily amongst friends, including the staff, who were a big part of her life. She was her own woman, and the support she received helped to elevate her independence and choice, and didn’t shield her away from the world.

We know that the providers which Cymorth represents are all committed to the core principles of the Supported Living model in Wales, which has generally been considered a leading example within the UK.

The impact of COVID-19

Since the beginning of lockdown in March, I have sat in on Cymorth’s Learning Disability Interest Group, a forum for our Supported Living providers across Wales to come together and discuss issues as a sector. The group’s meetings have given me a real insight into the pressures that providers and staff are under, and the considerations they have to make.

Something that the group have been grappling with over the past month is how to ensure that services still adhere to the principles of choice and control for people using services during the pandemic.

The low rate of COVID-19 transmission and mortality within supported living settings is testament to the hard work of staff and providers who have acted quickly and effectively. It is also, in part, down to the structure of the model itself that enabled a rapid lockdown, which is great for infection control. But should we be worried that independence and choice for people using services was taken away so easily?

I would be concerned if my Auntie Margaret was in the same situation, living in a setting that had suddenly locked down, perhaps without a full understanding of the situation or any control over what was happening.

Although I believe the sector in Wales has done the best it can in these unprecedented times in balancing public health with people’s individual liberties, we should be willing to ask some difficult questions over the next few months about how to uphold the principles of choice and control in the longer term.

 

The structural features of Supported Living

We spoke to Rick Wilson, Chief Executive of Communities Lives Consortium, about how the structure of the Supported Living model had been very effective in lowering transmission rates, and whether the changes brought about by COVID-19 potentially pose a risk to the principles of individual choice and control. Here are some of the key features he raised:

1)     Localism

Most Supported Living settings are embedded within communities. The impact of COVID-19 and the resulting lockdown really highlighted the disparities between settings commissioned locally and those further afield. The Welsh Government’s five-mile limit on travel may have meant some people with learning disabilities have been unable to see family and friends. This has reinforced the importance of localism, and embedding care within communities, so that networks stay close.

Rick says:

‘Newly-commissioned approaches to Supported Living that focus on building vibrant localities seem ever more important. These networks of people need to be useful as we come out of (and if necessary go back into) lockdown.’

2)     Support

Another feature of the Supported Living model is the long-term engagement of support in all aspects of a person’s life.  Support staff and agencies help people meet all of their personal outcomes, and therefore may have a high level of control over who individuals are coming into contact with, and thus minimise the risk of infection.

Rick goes on to say that:

‘There is a risk that, at times of crisis such as this, this positive holistic approach can create total institutions in which individuals are dependent on single agencies for everything they rely on. Careful use of Person Centred planning tools ensures that individuals and their households enjoy support that fulfils their personal outcomes and potential.’

In relation to this, the small, close-knit nature of Supported Living settings and static nature of the workforce means that groups of individuals are typically supported for a long period of time, and staff are more likely to develop personal investment and attachment to their work. Developing a strong positive relationship with people using services is likely to reduce the risk of abuse. But, as Rick told us, it is important that these relationships and ways of working are challenged occasionally to ensure that they are ambitious and recognises individuals’ views, values and desires. 

3)     Involvement

Another important aspect of the Supported Living model is the involvement of people using services in the structure and running of services as well. A real strength of the Supported Living model is that occupation of accommodation is based on legally constituted tenancies to give people with learning disabilities strong legal tenure in their homes. Rick notes how using tools like The Real Tenancy Test (Wales) is vital, to keep these tenancy arrangements effective and uphold people’s rights as tenants.

Some providers have been involving the people they support in the changes made to settings as a result of the pandemic.  Cymorth’s COVID-19 good practice report (3) highlighted good examples of how people with learning disabilities have been involved in support delivery during the pandemic. Mirus, for example, have been training people they support to become ‘Digital Champions’ so that they can educate others on how to use digital technologies to connect with friends and family remotely during lockdown.

These features of the model are supported by research which suggests that models of inclusion, where people with learning disabilities are at the centre of the development, planning and implementation of their own care are more likely to reduce levels of neglect and abuse. (Maestri-Banks 2015) (2).

4)     Accountability

Providers have developed strong bonds with family members of people using services with quite high levels of trust. This trust has been important for facilitating the necessary changes during the lockdown, including many families being very cooperative in adapting to the new, virtual ways of communicating with loved ones in Supported Living settings. However this has also flagged a problem, as Rick explains.

‘Lockdown has temporarily removed key elements of this culture of ‘eyes and ears’. Staff have worked exceptionally well to keep people safe, however it has been a time when critical questioning voices have been fewer, and praise and appreciation louder. Safe and empowering cultures are a balance of openness, appreciation and challenge returning to this is important.’

Bringing back visitations in a safe, measured and proportionate way will help go some way to reinstate the regular practice of questioning and challenge from family members.

The future

This leads us to think about the future and what can be done to mitigate instances of institutionalisation and abuse in Learning Disability settings. Research into the avoidance of abuse and institutionalisation of people with learning disabilities has noted the need to address the issues of powerlessness and discrimination (Emerson et al 2012) (4).

One way to tackle these issues would be to focus on staff wellbeing and morale. Whilst only one part of the jigsaw, paying care professionals appropriately for the skilled work may help to raise morale in the workforce and reduce feelings of disempowerment and neglect which usually indicate the starting point towards abusive behaviour.  

Another point may be to ensure that people with learning disabilities are not discriminated against when lockdown restrictions are lifted further, and that they are not forced to shield away for their own ‘safety’ unnecessarily, which would be a restriction of their rights and not conducive to happiness and fulfilment. Vigilance will be required to ensure this doesn’t happen.

Future changes to external inspections, such as reducing backroom bureaucracy, ensuring inspectors have specialist knowledge of the sector and that the views and experiences of people using services are pushed to the forefront even more, are all worthy considerations. Changes such as these may help reduce the burden on staff and empower people using services further. 

It’s great that the sector is thinking openly about how to avoid unintended consequences from the public health measures that have been put in place, and how to keep on upholding the choice and independence of people using support which has led to the Welsh approach being one of the most successful in the UK. We are in the early stages at the moment of looking at these issues, but I have been proud to be part of these discussions at Cymorth Cymru.

 

References

(1)   https://www.ldw.org.uk/wp-content/uploads/2019/03/Guidance.pdf

(2)   Maestri-Banks, A., 2013. Learning disability, education and empowerment: Learning from individuals who live with a learning disability. Health and Social Care Education, 2(1), pp.21-24.

(3)   https://www.cymorthcymru.org.uk/files/5715/9033/0280/COVID-19_practice_-_lockdown_guidance_-_Eng.pdf

(4)   Emerson E, Bains S, Allerton L, Welch V. (2012) ‘Health Inequalities and People with Learning Disabilities in the UK’ IHAL Lancaster.

 

 

 

 

 

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© Cymorth Cymru 2020
Company Registration No: 5093332
Charity No: 1116774