Community connections: Supporting people with learning disabilities

How can we ensure people with learning disabilities are actively involved in decisions about their support? Steve Cox, CEO at Perthyn, a learning disability charity, and Clive Parry, England Director at the Association for Real Change (ARC), tell us more.

As we begin to see what life will be like once the worst aspects of the pandemic are under our control, many of us have a vision of the future that is different from the world we lived in before March 2020.

This globally seismic event has prompted us to rethink what we knew, or thought we knew. Perhaps there are opportunities facing us now that, if we grasp them, will go some small way towards helping us to make sense of the awful loss of life we have witnessed.

Pre-pandemic life for the adult social care sector, particularly for people with a learning disability and their families and loved ones, was largely misunderstood by much of our society, including some policy decision-makers. The wide-ranging support needs for someone with a learning disability – from a few hours a week to 24-hours a day care – were either not known about at all or were under-estimated.

In 2017/18 in England, 150,100 out of approximately one million people accessing social care were adults with a learning disability.

Of these adults:

  • Approximately 147,920 accessed long-term support.
  • Approximately 2,180 completed short-term support designed to maximise their independence (NHS Digital 2018).

If a policy maker’s understanding of these support services comes mostly from reading specification documents, budgets or quality inspection reports, they are unlikely to come across descriptions of the links between a provider’s staff teams and the local community, including shops, pubs, leisure centres and places of worship where people came together pre-Covid.

Active involvement

Perthyn provides support to over 240 people living in the community across several local authorities in England and Wales, helping to develop their skills and independence and to enjoy a quality of life in their communities.

There was a huge focus on communication for our approach during the pandemic. Firstly, our staff worked closely with a group of people we support to produce easy-to-read leaflets about COVID-19 and how people could keep themselves safe, whilst advising them on the Government guidance.

Then, during the first easing of lockdowns, we produced a ‘Pathway Out of Lockdown’ document with people to help them understand how things were going to change.

The team considered what we should do to help people to be able to return to doing normal things.

At the same time, it was a chance for many to think about doing different things.

Staff, who are used to using a range of person-centred planning tools, developed an approach we called ‘Getting My Life Back’ (GMLB). This followed two simple steps that people could fill in using words and/or images:

  1. What I’m doing right now, how I do it safely and the support I need.
  2. What I REALLY want to do with my life once COVID-19 restrictions have lifted.

Guidelines in the plan helped each person to use the Pathway Out of Lockdown leaflet to help them choose what they want to do depending on the restrictions in place. People were encouraged to think about things they wanted to do differently and not to feel they had to do what they did before the pandemic.

Feedback from individuals, family and staff has been really positive and we have found people have used them successfully because:

  • The format is easy for people to use and for staff to support them.
  • How to do things safely is built into the format, so the person can consider the need for PPE/social distancing etc. directly to the activity they are planning to do.
  • There are suggestions in the guidelines about how the person’s life could be different from before the pandemic. For example, in the guidance we highlighted things people need to think about such as how to keep themselves and others safe, and how they might need to plan to go out in a different way.
  • The timing was right – people have had plenty of time to reflect on their lives and think again about their future.
  • It’s exciting to plan for the future.

Using this simple approach, the lives of many people we support have not only got back on track but have been enhanced. The people we support have been able to take up opportunities to do things in their community rather than going back to the day centre.

Person-centred planning

  • Individuals with higher support needs who live in residential homes or Supported Living services, should be able to access activities in their communities alongside people with similar interests who want to do things together.
  • Providers will deliver individual community-based activities in a person-centred way, the details of which were decided upon by the supported individual themselves, both in residential and day services.
  • Successful community-based support will always be driven by the wishes, preferences, priorities, and choices of supported people.
  • Providers will be clear and concise in the ways they communicate with supported people and their families and will work with supported people, so they are involved and engaged.
  • Providers will produce information that is accessible using person-centred planning tools and will review and update plans regularly involving supported people. When requested, providers should involve their family/carer in their reviews.

Building back better

Day services have been especially hard hit, firstly by the pandemic and then, in some but not all cases, due to funding cuts imposed by local authorities. We must seek to redress this quickly or the contribution to our communities will be lost forever, negatively impacting on the independence of the supported people who enjoy and benefit from day services and their family members.

As we think about ‘building back better’, we must look at how people were being supported before the pandemic to be actively involved and contribute to their communities and how that can happen again. The best people to ask what the future should look like are the supported people themselves, their families and the staff who know them so well. The relationships between supported people, families, carers, providers and their local communities are vitally important; they really matter.

Personal reflections

People have enjoyed new experiences and are learning new skills. Here are some of the reactions from people we have supported:

Richard – ‘I always wear my mask and apply hand sanitiser when I go into shops in my local area. I am careful to keep socially distanced from other people. I like to take a packed lunch as then I can avoid going into takeaways.

‘I would like to go to the countryside more, to go for a walk and to take some more photographs. I will wear my mask if I need to go indoors. I would need to take hand sanitiser with me as there is unlikely to be any available in this area. I would need to keep my distance from other walkers.’ 

Penelope – ‘I can now get the chance to go horse riding more often. I will need to contact the riding stables and see if I can book a lesson, wear my mask in the car on the way there, follow the riding school rules on social distancing, have my staff as walkers next to me to give reassurance, and take hand sanitiser with me to keep my hands clean after.’

Ed – ‘I now have the chance to visit more museums and learn about old transport. I will phone up the museum I would like to go to and visit and check their safety measures and what availability they have. I will try and visit on a weekday as I think this is when it would be less busy. I would ensure I take all PPE such as face masks, hand sanitiser and anything else my staff think I will need. I will need to make sure I keep a safe distance from people and try not to touch things. If I do touch things, I will make sure I use hand sanitiser to keep me safe. ’

Nick – ‘When doing my canal work, I am working outside. I will wear gloves to use any of the tools and I will need to keep a safe distance from members of the public when they are walking down the canal. I like to shake hands with people, but I won’t be able to do this now.’

Clive Parry is England Director at Association for Real Change (ARC) Email: Twitter: @ARCEngland

Steve Cox is CEO at learning disability charity, Perthyn. Email:

About Steve Cox

Steve has worked in the field of human services for over 35 years, the last 20 or so being at Senior/Director level within the not-for-profit sector. Steve continues to be actively involved in influen…

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cing and developing local and national policy and is currently a non- officer Board Member at Voluntary Organisations Disability Group (VODG) and Learning Disability Wales (LDW).

About Clive Parry

Clive joined ARC as the Director for England in late 2020 when, as well as all the challenges the sector was already coping with, providers were also dealing with the impact of a global pandemic.

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Clive has previously undertaken a variety of roles in a number of charities that support people with learning disabilities and he is responsible for the leadership of the England team which includes a greeing the steps we will take towards becoming an organisation that is led by people who have a learning disability autism or both.

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