my AFK Magazine Issue 4

ISSUE 4

my AFK Magazine

Celebrating our partnership with The Openwork Foundation + Ruben finds work in the midst of the pandemic + Erin and her new all-terrain buggy

HELPING YOUNG DISABLED PEOPLE LIVE INDEPENDENT LIVES

Greetings from AFK’s new Chief Executive Dear Supporters, It gives me great pleasure to write the introduction to this magazine as the new CEO! In this issue you will read some great articles about news and activities happening at my AFK. It’s been a difficult year for us all. The COVID pandemic has of course meant that our vital mobility and employment services are more necessary than ever before. There are 14 million disabled people in the UK; we know disabled people suffer unemployment disproportionately and following a year that ended with a COVID-induced recession, we hope to expand our services to help address this problem. One positive aspect of the COVID pandemic has been the successful provision of our employment service digitally, which presents a great opportunity for future development.

I feel very privileged to be leading the expansion and review of our services and look forward to meeting you all in due course and making even more of a difference! Thank you as always for your unwavering support and help on our journey to make this happen.

What’s in this issue?

Pages 4-7

The end of an era: Celebrating our work with The Openwork Foundation

Pages 8

New ways to give to AFK

Page 9

Our Top 5 Community Fundraisers

Page 10-13

Ruben’s story: finding work in the midst of a pandemic

Page 14

An all-terrain buggy helps Erin stay active

Pages 15

Legacy giving

Page 16-19

Lockdown, loneliness and disability: how our community is responding to the challenges of the pandemic

Visit our website for more stories: www.my-afk.org Join the conversation on social media: Facebook: @ThisIsMyAFK

Twitter: @my_AFK

Instagram: @my_afk

my AFK Partnerships

The end of an era: Celebrating our 4-year partnership with The Openwork Foundation The Openwork Foundation has supported my AFK with grants for over 20 years, helping us provide specialist, life-changing mobility equipment for disabled children and young people.

In 2017, The Openwork Foundation chose my AFK as their national charity partner and we embarked on a four-year partnership, which was especially valuable as the pandemic raised new challenges for our charity.

Our partnership with The Openwork Foundation has been an incredible success over the past four years. As this most recent collaboration comes to a close, we’d like to reflect on all we’ve achieved and thank The Openwork Foundation for their many years of support.

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In 2018 the Openwork team cycled across Vietnam to raise funds for AFK and sevral other children and young people’s charities.

Two key services have grown significantly since the beginning of this partnership – our advocacy work and our individual fundraising support – enabling us to do some incredible things!

Advocacy

Some families are not always sure what support they are entitled to from the NHS. With our in-depth knowledge of NHS wheelchair services and our position as advocates, in many instances we can ensure that these services provide the most appropriate support to disabled individuals and their families. This work aims to reduce the amount of time individuals and families wait to receive vital, life-changing mobility equipment.

Since the beginning of our partnership with The Openwork Foundation, our advocacy support service has successfully enabled 47 families and young people to gain access to statutory support, and we have ensured £42,000 worth of equipment has been provided by the NHS to applicants who were initially denied support or thought they were not entitled to any support.

Individual Fundraising

Specialist, bespoke equipment is extremely expensive, and we know that applying for grants and raising funds can be a lengthy and complicated process.

Thanks to The Openwork Foundation’s support, we have been able to offer more help to our beneficiaries by supporting their fundraising efforts, as well as applying for funding from other sources on their behalf.

Spreading the costs across several charities, individuals and businesses allows us to fund and contribute to more vital specialist equipment than would otherwise be possible, whilst reducing wait times for beneficiaries to a fraction of the time they once were. continued on next page

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How we helped families like George’s 10-year-old George loves swimming, reading and doing arts and crafts. George has Spinal Muscular Atrophy Type 2, a rare genetic neuromuscular condition that causes progressive muscle weakness and loss of movement. This affects George’s ability to walk, breathe and swallow.

We first met George when he was 15 months old; his family applied for a Wizzybug wheelchair at the recommendation of George’s physiotherapist. The Wizzybug is designed to look like a toy car, and helps young children prepare to transition into a wheelchair in a fun way.

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George & brother Harry (top) and testing his Piccolino’s recline function (bottom)

George’s Wizzybug, funded

by The Openwork Foundation in 2012, gave him the ability to play with his twin brother Harry and move around more independently.

AFK helped fund several wheelchairs for George over the years, most recently a Paravan Piccolino powerchair. George can’t stand unsupported and relies on his powerchair for all his mobility needs – it gives him the freedom to be in a seated or reclined position to allow him to participate in activities safely and comfortably at home and at school. He plays powerchair football and goes horseback riding with Riding for the Disabled.

George’s mum Liz told us more about the impact this equipment has had for her family: “When we first made contact with AFK in 2012 they were incredibly warm and welcoming. They came to our house, listened and showed genuine care and a commitment to help George. This strong level of support has been ongoing ever since, not just for George, but for our whole family.

“AFK have now provided George with two amazing powerchairs which have given him vital independence alongside a wealth of new opportunity.

“Amazingly, AFK’s support doesn’t stop there, as they also ensure that the annual servicing and maintenance costs of wheelchairs are covered. For a growing boy who likes to explore “off road”, this ongoing commitment from AFK to maintain George’s independence is invaluable.

“As a family, we feel incredibly grateful and lucky to have AFK’s continued support.”

George smiling in his Piccolino chair during a winter walk in the woods

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my AFK New ways to give

Your support is making a huge difference to AFK! Over the past year, charities and their donors have had to get creative to in order to support their vital work.

Despite all the challenges of fundraising during a pandemic, we have seen a huge increase in donations from one source in particular. iCollectClothes does exactly what it says on the tin they collect your unwanted clothes, and make donations to your chosen charity based on the amount of clothes donated.

Doing a spring clean and clear out? Visit their website to arrange a collection of your unwanted clothes, shoes, bed linen, books, toys and electronics! It’s easy to arrange a collection, and your chosen charity will receive £200 for every tonne of clothing collected. Just visit www.icollectclothes.co.uk to arrange a collection.

Kindred is another free and easy way you can raise money for AFK, and earn cash rewards for yourself, just by shopping online.

It only takes two clicks to add the Kindred extension to your computer. With every purchase you can earn cashback for yourself as well as donations for my AFK. Getting started is easy, just visit www.kindred.co/extension/myafk 8

Five community fundraisers that bring people together As COVID restrictions lift and we start to reconnect with our friends, family and neighbours, now is the perfect time to plan a fundraising event in your community!

1. Organise a street party

The warmer weather is the perfect excuse to get outside and eat, drink and play games with your neighbours - add a bake sale or raffle or just bring a collection bucket around.

2. Get moving with a fun run

Want to get active? Try a Couch to 5k or join a local Park Run - bring a friend to help you stay motivated!

3. Indugle your sweet tooth with a bake sale

Why not organise a summer bake-off with your friends?

Delicious and charitable - it’s a win win in our book!

4. Pub quizzes - they’re so much better without zoom...

Time to book a table at your local and get your quiz on!

5. Do a clothes drive with iCollectClothes (see opposite)

Ask your neighbours to donate their unwanted items to iCollectClothes and AFK will receive a generous donation.

To get started, contact Caroline at events@my-afk.org

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my AFK Life and Work

Ruben: finding work in the midst of a pandemic If you are disabled and trying to look for work, the odds are against you in a number of different ways. A lack of careers support; inaccessible transport and an overwhelming sense of apathy from employers with regards to reasonable adjustments; these are just a few of the problems facing disabled young people like Ruben when navigating the world of employment.

24-year-old Ruben is autistic and has a mild learning disability. He came to AFK in 2018 after his aunt referred him to the AFK Life and Work team. Having worked as a cleaner for a few years after studying at college, Ruben was ready for the next step. After getting help from the team to improve his resumé and set out his goals, he was ready to start honing his interview technique, approaching employers and bolstering his skillset.

The team organised to record Ruben’s sessions, answering questions and then listening back to how he articulated himself. This enabled him to hear himself back and make 10

Ruben proudly holding his new ID badge

adjustments such as slowing down with his speech and taking his time in explaining different aspects of his experience and how these would help him in the role.

Whilst he had successfully progressed to the second interview on a couple of occasions, he had not yet been successful in securing a new position.

“AFK have helped me in whatever w ay they can , and I’m tha nkful for that.”

A noticeable change in Ruben’s approach to the process was when he completed three separate interviews with three different corporate partners that work with AFK. Taking on board the advice and support given to him by our team, Ruben was displaying a new air of confidence, coming back stronger and stronger for each session. During this time he also passed his driving test and moved to his own flat independently. He was gaining traction in his search for a new role; however, COVID-19 put the brakes on this progress.

During the first lockdown in March 2020 Ruben was furloughed and subsequently made redundant. Although he was grateful to receive government support – meaning he was just about able to maintain his independence – after losing his job he feared he would lose his new home as well. Not to be disheartened, Ruben applied for a number of retail roles, but he found the application process challenging due to the number of online tests before even being considered for an interview.

“Ruben has displayed great staying power. Despite feeling disappointed at not getting through, he would pick himself up each time and start working with AFK once more to apply for the next job role,” explained Ruben’s Job Coach, Terry.

With rent payments looming and no income, AFK helped Ruben with an application to Aid for Asperger’s, a small charity that helps and support young adults who have Asperger’s Syndrome to improve the condition of their lives. continued on next page

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my AFK Life and Work Aid for Asperger’s very generously donated £500 – a large donation for a charity of their size – to cover rent and food as he awaited news of work, for which Ruben is so grateful.

Not long after this, Ruben made a successful application to Waitrose. “It all happened in quite a hurry,” he told us.

Reasonable adjustments were negotiated by the AFK team, meaning Ruben went straight through to an interview and he could concentrate on application details.

“Ruben mastered the art of making a good impression at an interview,” said Elaine, our Life and Work Manager. This was clearly the case as, within a week of being informed of his redundancy, he had been offered a new position working in a Waitrose filfillment centre.

Ruben’s hopes of changing his career path have finally come to fruition.

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“For me, it was a lot of hard work that eventually paid off. I actually said to myself, ‘third

time lucky’ thinking it might happen…in this case it was actually the fourth, but that shouldn’t stop anyone trying!

My confidence has grown significantly, and it has given me more knowledge in regards to what the job market is all about,” he said.

As part of the support my AFK provide, the team continue to follow up both with Ruben and the employer.

“My advice to others: just keep g oing and you can do it!”

Almost five months in to his new job and Ruben is hoping to stay long term.

“I love it around the warehouse. People are friendly, and dealing with deliveries and sorting the stock is the part of the day I enjoy the most. In 10 years, I hope I can be even more confident and take what I have learned with me, not only in work but with other life goals too! AFK have helped in whatever way they can to help me and I’m thankful for that.

My advice to others: just keep going and you can do it.”

Ruben has been supported by a team that cares about his success, not only in this new role but into the future. No matter what kind of role our trainees secure, the AFK Life and Work programme exists to provide tailored support in order for everyone to learn and thrive.

Through the use of innovative employment support practices such as these, our trainees are earning money, forming networks, and contributing to their communities, proving that when disabled young people are given a chance, and with the right support, far more often than not they can do well for themselves and employers. www.my-afk.org/life-and-work

How COVID is impacting employment among disabled people in the UK COVID-19 has had an impact on the work of 71% of disabled people who were employed in March 2020.* Recent research from disability charity Leonard Cheshire revealed a “crisis of confidence” among disabled young people, many of whom feel pessimistic about their futures. AFK is also conducting research into how the pandemic has affected disabled young people in terms of not just employment but also their mental health and wellbeing (pg. 16). *Source: Locked Out Of The Labour Market, Leonard Cheshire, 2020

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my AFK Mobility

An all-terrain buggy helps Erin stay active Erin is an 11-year-old girl who loves singing, dancing, being outdoors, going for walks around the local lake and parks, and spending time with her family.

Erin has Down Syndrome with hypotonia (decreased muscle tone) and hypermobility (her joints move beyond the normal range of movement), which affect her coordination and balance. Although she enjoys being active with her family, she tires quickly and can only walk comfortably for a short time. This meant Erin was not able to enjoy family activities like going for walks to the park and into town, going on trips to the coast, and walking into school with her friends. As an active family, these opportunities are essential for Erin and her family, and were even more vital during lockdown.

Erin’s family applied to AFK for funding towards a specialist all-terrain buggy which would allow her to enjoy the fresh air and engage in outdoor activities.

The family got in touch after the buggy arrived in March: “it is fantastic, easy to push and very comfortable for Erin.

We have already been out on local walks and can’t wait to get down to the coast for a walk, once restrictions are lifted. Thank you so much for all your help, we can’t thank you enough, it’s going to open up so many opportunities for us as a family.”

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Erin enjoying a walk with mum Lisa

Legacy giving: it’s a commitment to the future Next year AFK will celebrate 30 years of supporting disabled children and young people with life changing mobility equipment, work experience, holiday programmes and getting long term paid work.

We could not have done any of this without the ongoing commitment of our supporters, donors and raffle ticket sellers.

Every one of you has made the last 30 years possible.

As we look towards our future we want to ensure that our work continues and we are able to be there for disabled children and young people when they need us. This is why we ask that, if and when you decide to write your will, you consider leaving a gift to AFK.

For more information about making a Will, call our team on

020 8347 8111 or email

info@my-afk.org

For further information please get in touch and we will be happy to talk to you about how to go about making a gift. We also have a free Will writing partnership with Pembroke Will Writers - visit www.pembrokewillwriters.co.uk or call them on 01634 353 658.

There is no obligation to leave a gift to AFK by using this service.

Thank you!

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my AFK Research & Policy

How lockdown loneliness affects disabled people We all struggle with feeling lonely at times. The COVID-19 pandemic has led to increased feelings of loneliness and isolation amongst nearly all demographics in the general population. However, for those with physical or learning disabilities, loneliness is even more likely to be a chronic or long-term experience.

Loneliness is defined as “a subjective and unpleasant feeling in response to perceived or actual isolation”.

The Office for National Statistics describes Britain as “the loneliness capital of Europe” as we are “less likely to have strong friendships or know our neighbours than inhabitants of any other country in the EU”. Despite previous efforts to combat loneliness amongst the older generation, young people are now most likely to experience feelings of loneliness and social isolation.

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Research shows that people with disabilities experience loneliness and social isolation at much higher rates than people without disabilities. The reasons for this range from the practical barriers to social interaction, such as accessible transport and facilities, to the social stigma that causes judgment and discrimination against disabled people.

Our Holiday Programme, which is typically run from our main office in Hornsey, had to change last year as well. We ran an online programme in May 2020, which allowed us to keep the staff, volunteers and young people safe, but didn’t quite fulfill the purpose of this service, which is to offer young people new activities with their peers and give families a break.

All in all, a complex and challenging situation: a country that experiences more loneliness than its neighbours; a disabled population experiencing chronic loneliness and numerous barriers to social connection; a global pandemic that requires social isolation that is disproportionately affecting the younger generations and the disabled population - precisely the people AFK aims to support.

Our Services and Business Development Manager Kate Jackson said: “We were able to deliver a face to face Holiday Programme over the summer, which came just at the right time for so many of the young people and the families that we support. Young people had missed out on months of socialising, often having to shield and so could not even attend school, and some parents had reported regressions, loss of skills and confidence as well as low mood. The summer was a welcome break for all.”

During the first lockdown, AFK adjusted several of its services to provide safe online support to those we previously supported in person.

Graph (left): Proportion of disabled and non-disabled people who feel lonely regularly by age group, England, 2017 to 2018.

Source: Office for National Statistics 17

Jolene Sampson (pictured) has worked with us for many years; she has learning disabilities and first came to us through our Life and Work Programme. She now supports other young people as a Support Assistant.

“The most difficult thing I found during lockdown was being alone. Some of my colleagues and friends would invite me on zoom to socialise with me, but it didn’t feel the same. I struggle with technology and would rather interact with people in person.

I didn’t find the zoom activities helpful, because it was difficult to do it on my own while I wasn’t feeling like myself.”

For the disabled young people AFK support with employment, 2020 was a particularly tough year. Many of the trainees we had previously helped place into paid work were furloughed, which meant they were isolated from their colleagues and friends at their workplaces.

Others, especially those working in retail, were asked to work extra hours, which placed 18

additional strain on their capabilities and often affected their wellbeing.

“Anxiety has been high across the board for young people with disabilities,” said Elaine Harman, AFK’s Life and Work Manager. “Different messages from family, friends and the media have been distressing and very hard for some to cope with and understand.”

AFK staff have continued to provide additional support for trainees, families and each other during this stressful year.

Technology has allowed us to reach out regularly through phone and video calls, and safety measures taken in our head office has allowed a limited number of in-person sessions to continue. We have celebrated our successes with even greater enthusiasm this year: we have helped every single one of our furloughed trainees keep their jobs, as well as placing several others in employment for the first time.

Now we need your help!

Contribute to our resear ch

you’ve w o h s u l l e T g been copin

We’re looking at how the pandemic is affecting our community, especially disabled young people.

We invite you to share your stories, to help us shed more light on the impact the pandemic has had on disabled young people and their families.

Please tell us if any of the following statements apply to you: You have experienced mental health difficulties and/or felt lonely as a result of the pandemic and/or lockdown restrictions Your employment has been affected by the pandemic (e.g. you have been furloughed or laid off, struggled to find work or experienced more stress at work) You have a disability (or care for a disabled person) and the pandemic has made your life more difficult, in terms of your health and wellbeing, mental health, accessing services, or anything else relating to your disability and needs If you’d like to tell us your story over the phone, tick the box to request a call back and please write your number below.

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my AFK, 15a Tottenham Lane, London N8 9DJ

r Thank you fo ! your support Registered charity no. 1068841