Working with people with learning disabilities and/or autistic people.

Story shared 12.07.2021

Pembrokeshire People First, based in Wales, is a campaigning group run by and for people with learning disabilities and/or autism; providing advocacy, living skills, training and groups. 

What difference has the pandemic made to the communities you serve?

We work with people with learning disabilities and/or autistic people, and the pandemic has had a massive impact on our membership.

From the very start of the pandemic we noticed that our members had extremely heightened anxiety, and felt very ‘displaced’ as their routines were disrupted and they suddenly had far less to do and far fewer sources of support. 

Throughout the pandemic we provided numerous weekly online sessions and these were extremely popular – with some groups having as many as 30 members attending via ‘zoom’. Many of our members have told us how important these sessions were to them to provide a sense of routine, of community and as a place to discuss the fears and concerns that they had as well as to simply have fun with friendly faces. (“PPF has kept me going through the lockdown – it has given me something to look forward to every morning and people to talk to” -HWW).

The number of people that attended our online sessions clearly shows the isolation and need for company that was felt by our members, as does the amount of people that have asked to come back to our face-to-face sessions since we have been able to open up again.

Our members were also disproportionately affected by the lack of clear messages from the government – there was a clear sense of confusion and uncertainty about the rules and about what was and was not allowed.

This led to our members becoming increasingly isolated as they feared breaking the rules and did not want to risk this so adhered to much stricter social distancing/stay-at-home policies for longer than the general public.

We worked with ‘Lifeseeker’ – a local online content creator who worked with our members in order to create videos explaining the lockdown rules, and also discussing their experience of getting the vaccine. This helped to dispel people’s fears and misconceptions and also was very empowering for the members who were able to share their stories and educate others.

Another issue that affected our members was the fact that many live in residential homes, in which it is down to a manager to interpret the rules and to determine what they are able to do - this was often done in a very risk averse way.

One example of how this impacted our members was that JT who is a man living in a residential setting was told that due to his house’s rules he was unable to meet his girlfriend (who lived on her own) for a socially distanced walk or face-to-face conversation until March 2021 – far longer than most people were required to keep separate from their loved ones. Furthermore, as many of our members have co-morbid health problems, they were required to shield which had a detrimental effect on their wellbeing.

Many of our members contacted us far more frequently than they otherwise would to voice various concerns and, at times, simply to ‘have a chat’. This is another clear sign of the loneliness that our members experienced.

Since lockdown has eased, we have noticed that lot of our members have become far more anxious about returning to ‘normal’ life and have been very vocal about not wanting to come back out of lockdown and wanting to ‘stay safe indoors’. This is something we have been working on combatting by finding various ways to support people to feel safe and to re-engage in groups or one-to-one work but we foresee this will be an ongoing challenge.

One main thing that we noticed was that even our most independent members quickly became ‘de-skilled’ with regards to social interactions and that they spoke of being uncomfortable in social situations after lockdown and that they second-guessed themselves a lot more.

Many of our members who are employed work in the hospitality industry, and are on 0 hours contracts. As a result of the pandemic they were unable to continue their jobs and were not eligible for furlough  - this both increased financial privations and had a detrimental impact on their self-worth as they found themselves no longer able to work or to feel as though they were contributing to society.

As one member (SH) said: I went from having a busy social life, a boyfriend and a job in a restaurant to seeing nobody and never leaving the house. It was very lonely.

What impact did you see on your services as a result?

Our services moved online very quickly following the onset of the pandemic, and we became very busy with planning and delivering a wide range of sessions (from quizzes, to art sessions, to exercise and arts workshops to more calm chats).

At our busiest we were running 6 sessions every weekday, along with 1-1 work and being ‘on call’ for any members that contacted us.

We are very proud of how quickly and successfully we developed our online offerings and how the team worked together to ensure that we were always providing entertaining and fulfilling contact with as many members as possible.

However, this was very exhausting for our staff who were also going through a unprecedentedly turbulent time, and many of whom have familial responsibilities and their own wellbeing concerns. Many of our staff team took far less annual leave than they otherwise would have, although we made sure to encourage people to take time off in order to look after themselves and to prevent burnout.

As previously noted, we also had far more instances of contact from members than we did previously – with several members regularly having more than 100 hours of 1-1 contact (primarily via phone, text or social media) a week. This led to an inevitable strain on our staff members’ time and also developed dependence on our organisation which we are working hard to reduce.

Another major impact on our service was the increase in demand for counselling – whereas previously we offered counselling to a small number of members it became apparent that there was far more demand for this and that many members who were really struggling would benefit from formal counselling.

This led us to increase the hours of a member of staff who is a qualified counsellor in order to provide more counselling ‘slots’ for our members – this has been very well received by members who otherwise would have to wait for an extremely long time for NHS-based counselling services.

What has the NET funding enabled you to do for those people you help?

The NET funding has enabled us to:

• Deliver care packages and mailings to our membership
• Provide some of our members with ‘remarkables’ in order to increase their communication skills
• Work with ‘Lifeseeker’ in order to enable members to create information videos
• To increase our counselling provision
• To provide 1-1 coaching to members who are particularly struggling with returning to ‘the real world’ and
• To resume our small group sessions.

What challenges/opportunities do you see ahead?

The primary challenge that we foresee going ahead is balancing our online provision with our face-to-face provision – there are still a number of members who prefer to engage online and who have become very accustomed to interacting with us in a virtual environment. In fact several of our members have stated that they prefer this as they are able to engage from the comfort and safety of their homes. As such, we do not want to simply stop providing an online service, but many of our staff are now engaged in face-to-face work and so we are having to try to find a way to combine online and in-person working in order to meet the needs of as many people as possible.

Another challenge is the potential for a further lockdown – particularly with regard to the Delta variant. It is very difficult to open up and then close down again numerous times - particularly for our members who need a sense of routine and predictability.

The future of DPO’s - Why DPOs are important and why we need to invest in them and protect them in the future?

We believe that DPOs are incredibly important for many reasons – the most important of which is the fact that they enable people with disabilities to ensure their voice and opinions are heard and that the service that is delivered is one that meets their needs and wishes.

We feel that this not only enhances individuals’ sense of self-worth and self-esteem but that this provides invaluable insight into the best ways to deliver services.

In regard to the pandemic specifically, we were able to ascertain what our members needed and where they felt that they would most benefit from extra support – for example the need to socialise and to have a routine was voiced by many of our members which led us to establish our early morning ‘toast club’ so that members could start the day off with a chat and a cup of tea. This helped to maintain a routine and “gave me a reason to get out of bed in the morning” (ER).

Our work with ‘Lifeseeker’ has (and will continue to) further provided our members with the ability to get their voices heard and to share their experiences with others in an accessible way.

Read more about Pembrokeshire People First