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Articles > Community Comment > Community Comment: Q&A with Alix Lewer, CEO of Include.org

Community Comment: Q&A with Alix Lewer, CEO of Include.org

Perspectives on the post-pandemic advancement & development landscape

ToucanTech's Community Comment series provides a view of how community management is evolving, from a range of experts around the world.

 

Background 

What is inclusive communication? 

Inclusive communication means respecting and including all forms of communication - not just the spoken or written word. At any one time, an astonishing 1 in 5 people in the UK will be experiencing clinical communication difficulties, whether life long difficulties which co-occur with learning disabilities and / or autism or acquired difficulties which come with dementia, a stroke or brain injury. Inclusive communication means using signs, gestures, pictures, body languag , easy English, communication aids - whatever it takes to ensure that a message is successfully sent and received. 

What services do you offer businesses? How can businesses operate more inclusively? 

We offer a range of training options from an introduction to communication difficulties & inclusive communication, which helps businesses recognise communication needs in customers or employees, to more in depth courses which develop specific inclusive communication skills (like Makaton Signing (a fun-to-learn language system which supports people with cognitive communication needs), or creation of accessible resources). This can be online or face to face training delivery and we are currently developing a 6 module e-learning package. Whatever our training, we combine clinical expertise with a strong sense of fun (music is a regular feature as a great way to embed serious learning in an enjoyable context). Our members with learning disabilities contribute to the development and delivery of training, so businesses have an opportunity to meet the experts and perhaps address any preconceptions or inhibitions they may have around interacting with people who need additional support to express themselves or understand. 

We also offer training in making reasonable adjustments under the Mental Capacity Act, the law designed to protect the rights of people with cognitive communication needs; this is particularly relevant for health and social care providers,but also financial and law firms and many other businesses. (Spoiler alert - this training also comes with a song, co-written by our members to help people understand and follow the five principles of the Act).

What is the Include Choir? 

The Include Choir is the musical voice of Include.org.

Anyone can join. Members include people with and without communication needs. Everyone is valued for their unique contribution. We meet weekly in Redhill and run an online choir which is open to people across the UK.

Our members get involved in writing songs as well as performing and we use music as a tool for inclusion and learning about a range of topics (during the pandemic, we used songs and songwriting to help people understand the national guidance and their own feelings about the situation. Gems include the Coffee Shop (and Empty Shop) Blues, You’re Home and our favourite, the Stay Safe Tissue Song!

 The Include Choir uses video as a way of spreading the word about inclusive communication- and sharing the #WeTalkMakaton Sign of the week (which can be great for a giggle). It’s a great way to learn skills, as well as enjoying singing and performing together. 

We perform (in normal times) at conferences and events, and we also provide Corporate Away day opportunities which combine boosting employee wellbeing and team-building, with learning inclusive communication skills.

Are there any exciting events or campaigns coming up that you would like to highlight? 

We are so excited  to share this most beautiful song In My World . It was written by one of our members and her Mum , and animated by one of our amazing volunteers. It has been a source of great comfort and joy to all our online members during difficult times and we are delighted to share it more widely now. Our aim is to reach 1000 likes and subscribers by Christmas! 

So please, watch it, press like, subscribe and share with friends and family - help us make hidden communication needs and people with learning disabilities visible.

This song is the first step of our Autumn awareness raising campaign ‘Breaking Down Barriers’ - highlighting the real and underestimated needs of people with communication difficulties, which will culminate in a Match Funding appeal thanks to The Big Give Christmas Challenge (for whom we were ‘Small Charity of the Year Award’ winners last year)  Please do follow and look out for our videos and graphics sharing more about the experiences of our members and common misconceptions about communication needs. 
 

The past year

How has your community responded to the unique challenges that we have faced during the global pandemic? What do you think the biggest challenges have been for the individuals you interact with? 

For people with cognitive communication difficulties, particularly thinking of our members with learning disabilities and autism, already at risk of marginalisation, isolation, exclusion and health inequalities the Pandemic has thrown up challenges like never before. 

For a start, people with learning disabilities were at least 6 times more likely to die from COVID-19 than the general population - this was due to several factors:

  • many people are dependent on care support, which heightened the rate of transmission
  • people with learning disabilities often have comorbidities which meant that COVID-19 was a greater health risk
  • but also due to the impact of understanding and speaking disabilities. Information was not routinely made accessible for a large part of the pandemic, so people struggled to understand guidance
  • In addition, people who do not communicate verbally are at risk of later diagnoses and diagnostic overshadowing (interpreting non-verbal communication behaviours indicating ill health as a behavioural issue).

Near the beginning of the pandemic, the legal rights of people with learning disabilities and autism were under massive threat and there was blatant discriniation which meant that working age adults living in residential or supported living services were issued with blanket DNACPR orders or told that they would not receive ventilation if they were to become seriously ill. For people with learning disabilities or autism and their families - the pandemic has been a terrifying time and has seriously questioned the progress made in treating people as equal members of society. 

In addition to the health inequalities, social isolation and digital exclusion have also been a massive issue. Many people in receipt of care lacked the support from overstretched social care staff to facilitate online access to their friends, families and activities;and the restrictions of PPE meant that people who rely on facial expression, touch and other non-verbal cues to communicate and interact were doubly isolated in a deeply troubling and confusing world.

As regulations have limited many kinds of in-person community engagement, have you seen community members band together online, for support or other purposes?

At Include.org, we pivoted early to provide services on Facebook Live and Zoom, providing training and support for people with learning disabilities and autism and their carers. We provided accessible information about pandemic guidance (including collectively writing songs which helped remind of and explain guidance, and express feeling about them). We quadrupled our weekly session delivery to limit isolation and tripled our staff and volunteer team, reaching almost four times our original membership across the UK as well as locally.

Our members with learning disabilities and autism have been amazing! Many people responded really well to our initial training in using Zoom. Facebook Live and because facilitators and advocates for other people within their services who needed additional support

There have also been amazing local initiatives to provide tech equipment and support for people at risk of digital exclusion; unfortunately for many people in receipt of care services, these have ben unsuccessful due to lack of social care support needed for people to get online initially (and  a lack of understanding of the ongoing support needed for care staff to be able to facilitate engagement in sessions. Engagement in two dimensional multi screen communication is not necessarily natural or easy for many people with learning disabilities and autism and often lack of immediate engagement was interpreted as a blanket refusal to engage with digital services, instead of providing graduated support and exposure and in-session facilitation.

What impact are you aware of on the ultimate causes behind the communities you are in contact with - have people, campaigns, or goals been put at risk, or suffered as a result? 

People’s rights to communication support under the Mental Capacity Act and Care Act have been seriously eroded; in many ways, it feels that the pandemic highlighted the fragility of the ground on which the progress of inclusion of people with learning disabilities and autism was built. Due to the ever worsening crisis in social care, people seem to have fewer opportunities for autonomy or independence or to live the lives that we all take for granted, even as the grip of the pandemic eases. 

On the other hand, do you have any examples of success stories or anecdotes about positive outcomes that have emerged from operating differently during the COVID era?

We have seen a small proportion of our membership really blossom, and take control of their lives. These have tended to be people with milder cognitive communication difficulties who have been able to use the online and digital systems independently - in many cases teaching others, including social care staff and having real clarity and autonomy over their choices for social interaction online in a way which perhaps wasn’t true before. For Include.org as an organisation, we have a far greater reach than we had before the pandemic, both in terms of membership and volunteers. We have trialled so many new initiatives to reach people and were delighted to be selected as Finalists for the National Learning Disability and Autism Awards in the Breaking Down Barriers category. The challenge is now maintaining our response and potential for growth, as funding becomes ever more challenging and the volunteer population dwindles as life opens up again. 

 

The here and now

What is the atmosphere like at the moment within the networks you work with - would you say there is a positive undercurrent and signs of optimism, or are people experiencing fatigue with the limitations that we are dealing with across the world? 

That’s hard to say and I think it varies on an individual basis. There is certainly optimism, but there is also a great deal of confusion with changes that have come about due to the pandemic , the act that life is still not ‘back to normal ‘ (e.g. in our Include choir we cannot just gather together as we did but are masked and socially distanced because of the increased risk of Covid transmission while singing and the actional vulnerability of our membership. Throughout the pandemic, the times of uncertainty seem to have put the greatest strain on people with learning disabilities / autism and it feels as if we are in one of those periods now. 

Are you seeing any marked change in how networks have started to reinstate in-person engagement practices in recent months, or during periods where restrictions are lifted? 

Many people have sadly lost a great deal of social care support and are receiving less support than prior to the pandemic as cash-strapped local councils and private social care services with reduced staffing levels. We have fewer people able to physically access services due to a lack of staff or transport. This, as well as our increased geographic reach has made it imperative that we maintain our digital services while reinstating face to face services. Finding resources to fund and staff this is a challenge, but not to do so risks losing the benefits in digital skills and engagement that the pandemic brought about. For the in-person services themselves, it is wonderful to be back together but ongoing concerns about the ongoing spread of the virus have meant limiting numbers, continuing distancing and mask wearing indoors  which does impact on the relaxed feel of what we do. On the other hand, we have increased the number of outdoor inclusive communication and engagement services we provide, with a knock-on benefit for health and wellbeing. It is all about flexibility and creativity. 

Are you aware of any communities that are thriving, and whose fundraising efforts have pivoted or even been facilitated by an increase in online engagement? 

We certainly pivoted our fundraising efforts. Without any dedicated staff for community fundraising, we benefited massively from the early influx of volunteers with digital graphic, communications and IT skills for our first ever online fundraiser last year - The Big Give Challenge Match Funding Campaign, and we were delighted that our successful campaign won us their ‘ Small Charity of the Year’ Award. Our challenge this year is to achieve the same impact with a diminished volunteer workforce and even greater funding needs. 

Have you spoken to any contacts recently who have taken the opportunity to change their ways of working, are employing new tactics or trialling alternative techniques? 

For Include.org and many small charities like us, it feels that we are in a constant state of evolution as we need to adapt to the contracted funding landscape and escalating needs of the people we support. The one thing that small charities can not afford to do in the current climate is stand still, which means gathering those depleted energy reserves, reaching out to new volunteers with fresh ideas - and keeping at it! 

 

In the future

Whilst it’s tricky to predict, do you foresee any long-lasting outcomes for fundraising and community engagement operations or initiatives that your community would welcome?

We have learned so much,over the last couple of years; particularly about the importance of an active social media presence when it comes to online fundraising and community engagement. It is a challenge to find volunteers to help us maintain this, but we are determined not to let go of the learning the pandemic brought about. 

Do you think that working patterns or location could change permanently, and where certain roles make this impossible, do you think this disparity might be hard to manage?

We continue to work with volunteers from across the UK - and from as far away as Finland and Vietnam! This is something we could never have anticipated pre-covid. Most meetings at all levels continue to be online - and while I do feel that sometimes we need to maintain a balance or risk losing something fundamental to human communication which only happens in person  - the benefits and time and cost saving of engaging online are irrefutable and here to stay.

Are you expecting to celebrate more online/digital admin or engagement solutions in your everyday, and how could this change your relationship with your colleagues/clients? 

We are definitely keen to maintain and develop our online services and we hope to reach people with cognitive communication needs and their staff teams across ever widening geographical locations. We have had to set a much more ambitious target for our online match funding campaign this year and hope the steep learning curve last year will lead to similar successes and build a bigger network of support this year in the Big Give Challenge. The risk is that by focusing too much on digital solutions we marginalise those beneficiaries / supporters for whom online engagement is challenging - I think it’s all about balance.

What kind of message would you like to send to your peers and professional network in the coming months - what is motivating you, and have you found a silver lining? 

Life is tough at the moment. The small charity sector, like many others, is exhausted and the juggle of intertwined work and family life in a digital age can feel totally overwhelming. It is so important to stop and take stock of achievements big and small. I sometimes think how little of this we could have ever imagined before March 2020 - so who knows what unimagined benefits and successes may be round the corner. Onwards and upwards! 

 

Alix Lewer is the CEO of Include.org, a UK charity that advocates for inclusive communication and provides community projects, training and consultancy. You can support Include.org by volunteering, donating at include.org/donate, or following them on their social platforms:

Twitter: Alix Lewer (@includeorg) 

YouTube: The Include Choir

Instagram: Include Choir (@includechoir)

Facebook: The Include Choir | Facebook

LinkedIn: https://www.linkedin.com/company/include-or

 

ToucanTech is an all-in-one community software, combining data management, member engagement, and public or private online platforms. Connect your network and consolidate administration using a customisable and easy-to-use solution, built for community managers. 

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