KtoA Magazine - The Spring issue

Kidz to Adultz Knowledge to Action

Issue 21

The Spring issue

Featuring:

How to save money and avoid food waste

Future planning for a child with special needs

Support with energy bills in 2023

What’s on

Culture, Sports & Events

Awareness days

Find a Funder

Package one:

Padded

Welcome! to our latest issue

Spring is finally upon us and as new signs of life begin to flourish the team at Kidz to Adults is excited to announce the rebirth of our quarterly magazine. Knowledge to Action is at the heart of the KtoA publication and is designed with our community in mind including families, carers and healthcare professionals. With each issue, we want our audience to discover inspirational stories, hear about

real-life experiences, find advice about current topics and exciting cultural activities taking place.

Each quarter will focus on current themes, provide a hub of information and deliver articles that capture your imagination. In this edition, we uncover new ways to adapt, save money and maintain a healthy well-being.

Top tips for cost-effective cooking

Future planning for a child with special needs

What’s on?

Household energy bills in 2023: What support is available?

Harry’s Pals: Supporting fellow parents

Proportionate spending: using adaptations to reduce long term costs

Tree of Hope: Transforming the health of sick and disabled children

Awareness Days

Dark Horse Theatre heads to a dystopian future @neurodiversitywithlozza

Top-tips: For cost-effective cooking

How to save money and avoid waste when food costs are sky rocketing. Ian Taverner, AKA Mr Cookfulness, gives KtoA Magazine his suggestions. Ian is a food writer and coach living with disability and chronic illness, and is the author of Cookfulness: A Therapeutic Approach To Cooking.

At a time when the cost of living has increased so much, there is no single solution to coping with mounting food prices. With the higher prices shoppers have seen since early 2022, even savvy budgeting has become more and more difficult. However, there are a few hints and tips to bear in mind that can make a difference. Here are a few of my top tips to helping you budget, and to keep you cooking joyfully. One of the largest areas of individual food waste, and therefore financial waste too, is fresh fruit and vegetables. We’ve all had the bananas in the bowl going brown, the potatoes seemingly sprouting a whole new

potato farm, and half-eaten packets of salad and herbs left at the bottom of the fridge. Fresh fruit isn’t cheap and so we really need to try and use it all, every time. If bananas are going a bit soft and brown, don’t throw them out. Instead, peel and slice, and put into recyclable or compostable bags, or reusable containers, and into your freezer. Fresh raspberries, strawberries, blueberries too; don’t throw them out, freeze them! You can use these in smoothies, to make a quick crumble, in flap jacks, ice cream –so many things.

With lemons and limes, they often come in bags of three or four, and you might only use

one or two. We’ve all been there. If you can, zest them into a little container for the freezer and juice into ice cube trays. You’ve then saved on waste, and you have instant zest and flavour ready to go. With potatoes, make sure they aren’t too soft or black before removing any of the growing eyes (they just push off easily), and then boil or steam them. Make up some mash and then put that into the freezer too. You can even roast them and put them in the freezer, ready for when you really need them.

Fresh herbs are a classic example of when we buy with the best of intentions but end up throwing them out. Instead, you can chop them up, add to a little olive oil, and put into an ice cube tray for when you need them in the future. You can also put them whole into a jam jar and top up with olive oil for beautiful homemade herb oil.

One big tip to help you with the above is, in addition to labelling, to make a little list of what you have put into your freezer. I am sure, like me, you forget very easily what you put in when. After a little while in the freezer, things tend to all start to look the same too! So to avoid the surprises and to avoid buying more of what you already have – and to boost your cooking options – just write a little list of what you have in each freezer compartment and then stick it to the back of a cupboard door. Then, when you need it, you know exactly what you already have.

Those of you who already follow me will know I am big on making dishes into other dishes, making ingredients go a long way. I want you to have the best chance of enjoying cooking, and really look forward to the process – not dread it. The more you work with ingredients, the more excited you will become with smells, flavours and textures.

Take the humble can of baked beans. They are great value and keep for a long time, but don’t just use them for beans on toast. You can make baked bean burgers, bean tacos, spicy beans and bean burritos. There are all sorts of options and because baked beans are always popular, you are more likely to get a green light from everyone in the family to give it a try. The same goes

for a can of chickpeas. We’ve all got them but probably don’t often use them. Chickpeas can be roasted with all kinds of spices on top for a great little healthy snack, and used in plenty of dishes –they aren’t just for hummus.

So you might think this all sounds great, but is it actually, possible and is it simple to do? Honestly, yes. There are many great recipes around. On my website, www.cookfulness.co.uk, and YouTube channel Cookfulness, there are lots of free video demonstrations and recipes available that use these often-wasted foods as the star ingredients. I try to make it as simple as possible, as fun as possible and as accessible as possible. You can join my Cookfulness Revolution on

Future planning for a child with special needs?

Seek out an expert who gets it

One family shares how they planned for their daughter’s future with the help of a specialist.

Every parent worries about what will happen to their children after they’re gone. When your child is vulnerable due to disability or special needs, that worry only gets bigger. How will an inheritance affect their funded support? Who will ensure they get access to the right financial advice? How will they cope with being in charge of their own wealth?

Maria and Steve have a 15-year-old daughter with a rare genetic condition called DDX3X syndrome. They approached Rhiannon Gogh at PlanIt Future Financial after a friend heard her deliver a talk on wills and trusts for children with special needs.

“Our daughter Alex’s condition is a rare one that affects her in many ways.

She has autistic traits around behaviour and communication; she has learning disabilities, and she has sensory processing difficulties too. She’s also got a CVI - a cerebral visual impairment - which means she can’t judge the speed or distance of cars, for example, so she wouldn’t be safe crossing a road on her own. And she has high anxiety, mostly around sounds, which creates a fight or flight reaction in her.

The result is that she is unlikely to lead an independent life. When we’re gone, she’ll need other people to administer her money for her because she’ll be vulnerable to predators and to just giving away all her money. She currently has a very limited concept of both money and time. and time.

Cutting through the legal jargon

It was a friend of ours who heard Rhiannon speak about creating wills and trusts for children with special needs at a local support group. She told us about what had been covered and, as we’d been thinking about how to plan for Alex’s future for some time, we thought that Rhiannon sounded like exactly the person we needed to guide us.

What struck us particularly was the difference between her and the solicitor we’d seen previously to write our original wills. When we came away from the meeting with the solicitor we thought, “What on earth is she talking about?” We’re educated, intelligent people but she used so much legalese and jargon and obscure terminology that we couldn’t understand her explanation about setting up trusts at all.

Rhiannon talks in a way that we can understand and explains everything so well. If we don’t understand something it’s easy to say: “Rhiannon, I know I’ve asked you this twice before, but please explain it again because I just don’t get it.”

When it came to setting up the wills and trusts, she knew the hurdles that we were likely to face, the problems we might have and the options that were open to us. She didn’t dictate to us but gave us her considered thoughts and recommendations, which was really helpful.

Continued support in changing circumstances

Having explained everything to us, Rhiannon recommended us to a specialist solicitor who drew up new wills which incorporated a discretionary trust. She also helped us protect our pensions in trust and arranged our investments, she still continues to do so and hopefully will do for a very long time!

We originally had our pensions elsewhere, but we realised that the financial advisor looking after them wasn’t really keeping us informed. Now that Rhiannon oversees our pensions, we are confident that she checks

regularly to make sure they are always performing the way we need them to. Our circumstances have changed since then too. We went through a relationship break-up and needed support to help the solicitors separate our finances while still providing for Alex and not impacting what we’d set up for her. We called Rhiannon and she actually spoke to the solicitor for us to make sure it was all handled correctly.

When you’ve got a child with special needs it’s rare to find anyone who can genuinely empathise with your situation, someone who you feel is really on your side and there to help. But with Rhiannon we feel so lucky because that’s exactly who we’ve found.”

Rhiannon Gogh FPFS is a Chartered Financial Adviser, Founder and Director of PlanIt Future Financial Limited. She regularly presents to parent associations, charities, foundations and special schools.

To receive a complimentary guide covering wealth management, retirement planning or Inheritance Tax planning, please email planitfuture@sjpp.co.uk or call 01458 555078.

What’s on?

Events

Anxiety and Additional Needs Training

(Zoom) Thursday 11th May 2023

NSPCWT would like to invite parent carers to a fully funded face to face training session with Catrina Lowri from Neuroteachers for training on anxiety and additional needs.

Parallel Windsor/Festival of Inclusivity

(Windsor or virtual)

A range of accessible challenges on the day with the slogan ‘Start together, finish whenever’, and there is a festival with a charity village, food, mobility technology, arts, craft and music.

Festability – Where Music Meets Disability

10th June 2023, Kent

An open-air music festival for all regardless of ability or impairment. Anyone can attend the festival which includes karaoke, workshops, adapted sports, fairground rides and games.

Mental Health and Wellbeing event

11th May 2023, Cardiff

A day of exhibitors, speakers and experts promoting positive mental health and wellbeing. Schools, carers, colleges, etc. attend the show for further knowledge and information. Free exhibition entry.

Under one roof

Varied dates

Raves are open to everyone, but especially those with learning disabilities (18+). Mainly based around the North, especially in Manchester.

Cerebral Palsy: From Childhood to Adulthood

(Online or in person)

24th May 2023, Shoosmiths London

Free of charge. Hear from parents and experts with experience, to discuss the transition from childhood to adulthood.

2024 Paris Paralympics event schedule now live

The schedule has been released for the event taking place next year. The schedule shows a clearer outline of what the 11 days of competition will look like.

British Gymnastics

Set out ambition to see international competition for disability gymnastics

British Gymnastics has set out its goal to establish international competition for disability gymnastics helping to provide opportunities for Britain’s leading disability gymnasts to compete on the world stage.

Sports Films

Avatar: The Way of the Water

Technology used in Avatar is now being used in research for Friedreich’s Ataxia and Duchenne Muscular Dystrophy to capture the deterioration of movement over time.

Special Olympic World Games

A tennis player with learning disabilities has been selected to represent team GB Matthew Brough, a tennis player will travel to Berlin in June to join the team and take part. Matthew has previously won the ‘ York Sport Young Disabled Sports Person of the Year 2019’.

G4D Open

10-12th May

The golf competition will take place with up to 80 players with a range of disabilities and skill bases.

Well Wishes My Love, Your Love (short film)

This experimental, coming-of-age short animation film uses colour and movement to display a world in which there is no ‘other. A young boy lends his prosthetic arm to a companion to experience the world.

Peter Pan & Wendy

Cast Noah Matthews Matofsky (born with Down Syndrome) as Slightly. Based on J. M. Barrie’s and inspired by the 1953 animated classic, Peter Pan and Wendy is the timeless tale of a young girl who travels with her two younger brothers to the magical Neverland.

Same but Different CIC –In conversation with Bethan Roberts

Same but Different podcasts look at rare diseases/disabilities and the personal experiences of those who live with them. This specific episode looks at a mother whose baby has Mosaic Trisomy 8.

Ciara’s Pink Sparkle Podcast

Ciara Lawrence has a learning disability and works for Mencap. She aims to spread awareness of learning disabilities in her podcasts and interviews celebrities on each episode.

Podcasts Theatre

Extraordinary Bodies: Waldo’s Circus of Magic and Terror (12+)

Varied dates

Extraordinary Bodies are a collaborative group of disabled and non-disabled performers and creators. All performances have accessible and inclusive options. This circus piece will travel around the UK from March – June 2023.

Wicked at the Apollo Victoria Theatre, London

Relaxed Perfromance

Suitable for young people with autism, learning disabilities, etc. Adjustments are made to sound and lighting to accommodate all. The audience is not required to sit or stay quiet. Tickets available at a discounted rate.

Covering a wide range of topics, from disability benefits to diagnosis, this podcast offers helpful and valuable information to families who have a child with a disability. Lots of short, informative podcasts which are just a few minutes long’.

Oily Cart presents The Lost Feather

Sunderland, 13th July 2023

A sensory storytelling session, designed for all children, especially disabled children and their families. Features live music and sensory

The Abilities in Me

Fiction. Abilities in Me Foundation is a charity that writes stories for children with a range of disabilities to show their capabilities.

Good Morning Dinah (Emily Holyoak)

Fiction. 17-year-old Dinah is in her final year at school in the US. She also has autism and an assistance dog.

Jayben and the Golden Torch

Fiction. Written by Thomas Leeds, who suffers with a brain injury and epilepsy, this fantasy novel looks at the life of a boy who awakens with no memories and has to save the world.

Books Television

Doctor Who

Doctor Who to have their first wheelchair user actor. Ruth Madeley suffers with spina bifida and uses a wheelchair. She will be playing Shirley Anne Bingham in the 60th anniversary of Doctor Who.

Strictly Come Dancing

Strictly Come Dancing to cast their first wheelchair user contestant.

The i Word

Comedy pilot on two wannabe influencers with disabilities.

Disabled Children: A Legal Handbook 3rd

Edition

Non-fiction. A free to access e-book on the legal rights of disabled children and their families in England.

Autism and Masking: How and why people do it and the Impact it can have

Non-fiction. This book looks at the latest research into masking and the consequences it can have on physical and mental health, as well as having an effect on other people around.

Cosima Unfortunate Steals a Star (Preorder)

Fiction. Fun children/teen book about a group of disabled children and their adventures.

Coronation Street character to be diagnosed with MND

ITV has recently announced that Paul Foreman will be diagnosed with MND. MND Association have worked closely with ITV to ensure the disease is portrayed as accurately as possible.

A Special School (BBC series)

Documentary. Looking at the biggest special school in Britain (Ysgol Y Deri).

Household energy bills in 2023:

What support is available for disabled people?

As the cost of living crisis persists, people with disabilities and their families continue to be disproportionately affected by high energy prices. Here we examine the issue, and look at the available support.

People with disabilities often face higher living and energy costs. This can be due to greater travel costs, higher heating bills in order to be comfortable, and powering specialist equipment, such as wheelchairs. They are also more likely to have lower incomes or be living in poverty. In fact, research from Scope showed the extent of the problem, including the fact that disabled people are more than twice as likely to unable to heat their homes.* These increased costs not only mean many people with disabilities struggle to meet their essential needs,

like food and other essentials, but also need to make savings elsewhere, such as visiting family members – further affecting their quality of life and general wellbeing.

Household costs increased by 9.2% in the twelve months to February 2023, according to the Office of National Statistics**. This increase is largely due to massive increases in electricity and gas prices, and increases in food bills of 18.2%. As of April 2023, the monthly credit that the government was funding for every household (£66 per month,

from October 2022 to April 2023) will end, meaning bills will go up. In addition, the Energy Price Guarantee from the government, which limits the amount that households pay, was due to increase 20% on the 1st April 2023***. Following a campaign led by Money Saving Expert’s Martin Lewis this change was postponed for three months, but it is still expected to rise later in the year. This cap would mean that households pay on average £3,000 per year, rather than the current average of £2,500 per year –but in reality, for houses with high energy costs, the figures can often exceed this average cost.

What support is available?

£150 disability cost of living payment - 2023

If you receive disability-related benefits, including Disability Living Allowance, Personal Independence Payments and others, you will receive a £150 payment in Summer 2023. You should receive this payment automatically.

£900 cost of living payment - 2023

If you receive Universal Credit, Income-based Job Seekers Allowance, Income-related Employment and Support Allowance, Income Support, Working Tax Credit, Child Tax Credit or Pension Credit, you are due to receive a £900 payment in three installments (Spring 2023, Autumn 2023 and Spring 2024). You should receive these payments automatically.

Financial assistance from energy companies

If you are not able to pay your household gas or electricity bill, you might be able to get support from your supplier. In some cases, you don’t even need to be a customer to apply. Each scheme has its own requirements and you will usually need to provide proof of circumstances to receive funding. Available funds include:

British Gas Energy Trust Charis: Let’s Talk Energy Fund provides assistance with bills and broken white goods such as cookers, fridges, freezers and washing machines

EDF Energy Customer Support Fund

E.ON Energy and E.ON Next Funds

Octo Assist Fund

Ovo Energy Fund

Scottish Power Hardship Fund

Shell Energy

Utility Warehouse

Fuel vouchers and local energy grants

Fuel vouchers are used to top up prepayment meters if you can not afford to do so. You can use a fuel voucher at a PayPoint shop, or a Payzone shop or Post Office. There also might be grants or schemes available from your local council. Find your local council and get in touch with them.

Priority Services Register

For individuals with disabilities and additional needs and their families, it is a good idea to sign up to your utility company’s (including gas, electricity and water) Priority Services Register, which means they know you might need additional support in the case of service disruption or other problems. The register is for people who are of State Pension age, disabled, sick, or considered vulnerable for other reasons.

Rebates for oxygen concentrator usage

Rebates are available if you or someone in your family requires an oxygen concentrator at home. This is to cover the cost of the electricity used.

Electricity Rebates (BOC Home Oxygen Service) Patient Service Centre

Electricity Refund (Air Liquide Healthcare)

* ‘Disabled people hit hardest in the biggest cost-ofliving crisis in a generation.’ Scope, 8 February 2022

**https://www.ons.gov.uk/economy/ inflationandpriceindices/bulletins/consumerpriceinflation/ february2023

***https://www.moneysavingexpert.com/utilities/whatis-the-energy-price-cap/

Five money saving opportunities:

Get the benefits you’re entitled to. Find a UK benefits calculator online which will work out if you can claim any financial help based on your income.

In England it costs £9.35 for a prescription but people with certain medical conditions and disabilities get them for free.

Don’t pay VAT on items or equipment which have been designed or adapted for your personal use.

Some telecoms firms now offer multiple ways to make contact – it maybe worth selecting your preferred method of communication to haggle a better deal.

Get 1/3 off rail fares with a £20/year Disabled Person’s rail card.

Harry’s Pals:

Supporting fellow parents

Harry’s Pals provides emotional support to the parents of severely ill or disabled parents. Hayley Charlesworth, co-founder of the charity, talks about her own family’s journey, and their decision to create the organisation.

Harry’s Pals was launched in April 2022. The charity is named after my son Harry, and was set up to bridge the gap in emotional support that we ourselves experienced following his heartbreaking diagnosis.

When Harry was born in 2015, we had no idea that our lives would be flipped upside down. It was only when he started to have violent seizures the day after he was born that doctors realised there was something terribly wrong. Eventually, after a multitude of tests, we were given the devastating news: our son would need care for the rest of his life due to the level of brain damage identified during an MRI scan. I remember asking the consultant who delivered the news, ‘Will we be allocated any emotional support?’ The answer was ‘No, sorry. It’s not something parents are offered.’

Over the years since I have given this much thought. I’ve reflected on the detrimental impact that the lack of emotional support has had for us, and how this affected

my family during such a harrowing, isolating and frightening time. I still find the lack of provision shocking, especially given that the parent is also then charged with looking after a medically complex child.

Because of this, last year I decided to launch Harry’s Pals. We support parents through three types of activity, and these are all services that would have made a huge difference to my husband and I as we struggled through those early years. We provide emotional support to parents through professional counselling and therapy sessions, which are bespoke to their needs We offer 2-4 night breaks away so that families and couples can get some muchneeded time out. We have also set up a networking group so that parents who are new to having a child with a complex illness or disability can speak to other parents who have been or are going through something similar.

If you would like to find out about Harry’s Pals and how you can support us, please contact harryspalscharity@gmail.com

If you would like to make a donation then please go to www.justgiving.com/harryspals

To apply for support please go to: www.harryspals.org

To join our networking group please search the Harry’s Pals Parent Support Group on Facebook.

The Cloud Cuddle is a multi award winning - CE Marked - class 1 medical device. It’s tough, robust and durable and in just 5 minutes it can be fitted to any single bed to create a safe and calming place for a child to sleep and relax.

Huge cost saving compared to care cots & soft surround bed options. Home assessments throughout the UK are available.

Helping Healthcare Professionals

Proportionate spending: using adaptations to reduce long term costs

By Adam Ferry, Occupational Therapist and clinical advisor to Abacus Specialist Bathroom Solutions

As professionals supporting people with disabilities, how often have we walked past something in an exhibition and thought “that’s too expensive, there’s no way I’ll get approval for it”, or “I am looking for a ‘cheaper’ solution”?

The term ‘expensive’ is often used to describe something that ‘costs a lot of money’ or ‘more highly priced in comparison to another’ but with little consideration of how cost effective the solution might be.

Cost effectiveness can be defined as:

‘When the greatest benefit is gained for a comparatively low price. The concept is commonly employed when choosing from a variety of investment options, so that the greatest possible return is generated in exchange for the amount invested.’

This definition is clearly aimed at the financial sector, but is easily transferable within healthcare, where investment options in this case are the choices, we have over equipment and adaptations, and return on investment (ROI) is the saving made elsewhere as a result.

Let’s consider therefore how we determine ROI on adaptations within the healthcare sector, using published research and data to provide a robust evidence base.

The World Health Organisation (WHO) Housing and Health Guidelines is a literature review considering international research into benefits of adaptations and accessible housing. It found that:

Studies reported considerable decrease in perceived difficulties performing activities of daily living after home modifications.

Self-efficacy, defined as confidence in managing difficulty, was improved in intervention groups (those who had home adaptations/modifications).

Increased safety was identified 2 months after modifications.

Greatest safety benefits were identified in bathroom and access, and in particular when difficulty in bathing and toileting were identified.

The Centre for Aging Better found that ‘preventive work to mitigate worse than average hazards associated with falls on

Perhaps the clearest evidence on ROI comes from the Building Research Establishment (BRE), who provide clear data on the number of specific home hazards, cost of modification, and savings on both health and social care.

They describe, for example, how resolving 8,265 bathing hazards, at an average cost of £627 per home, totalling a spend of £5,181,460, would save the NHS £2,299,090 over 2 years, and save social care £25,628,882 in 2.5 months.

Now, clearly their average spend of £627 per home doesn’t buy an awful lot; maybe a bath lift or a bath board and some grab rails, but even if you account for 20% of these modifications being specialist baths, like the Gemini 2000 from Abacus, the figures demonstrate the total spend would pay for itself within 3 months, through a combination of reduced requirement for health input after injury, and reduced care need.

*50376

*Centre for better ageing (2018) The role of home adaptations in improving later life.

*BRE (2016) The cost-benefit to the NHS arising

case studies which demonstrate the cost effectiveness of proactive adaptations to delivering a positive ROI.

It is clear that rather than considering the initial outlay in terms of expense, or indeed ‘expensive’, we need to reflect more on cost-effective solutions and being able to provide an accurate and robust rationale which includes the return on investment.

In an economic climate where everyone, including local authorities, is needing to tighten their budgets, surely we must

Instead, consider the longer-term impact on health and social care by investing in adaptations that are going to save tax payers money, which can be re-invested to ensure high quality housing, and clinical services can be delivered for generations to come.

For further CPD insight to enhance everyday practice, visit the Abacus Academy at: https://www.abacushealthcare.co.uk/abacusacademy/ or telephone: 01527 400 024

What do Tree of Hope do?

Tree of Hope are a national children’s charity who provide backing to fundraising campaigns, giving families and supporters better access to effective fundraising avenues and resources. The charity has been transforming the health of sick and disabled children across the UK for over 30 years, by helping families to raise funds for needs associated with any healthcare condition or disability.

Why is this important?

Caring for a child with a disability is three times more expensive than raising a child without a disability, as well as being a rollercoaster of emotions and experiences. Not only do parents often need to reduce working hours to care for their child,

but benefits including Disability Living Allowance (DLA) don’t keep pace with the extra costs involved with raising a child with additional needs. Recommended equipment and services from therapists and medical teams, come at a premium, and with the NHS under increasing amounts of pressure and waiting lists growing – how do you do it?

How does Tree of Life help?

Tree of Life gives charity backing to fundraising appeals from families and supporters. Charity fundraising is the most tax efficient way to fundraise, with the tax man giving an additional 25p for every eligible £1 donated, which helps to take care of a chunk of your fundraising target. Through Tree of Hope, families also have access to support from businesses, donor reassurance that money will be used for a child’s benefit,

help to expand donor networks, and increased access to trusts, foundations and match funding opportunities. This makes it much more effective than traditional crowdfunding platforms.

Tree of Hope also provide weekly fundraising advice and ideas. Tree of Hope campaigns come with complete financial management provided, giving families peace of mind, as well as providing greater exposure with dedicated marketing support through social media and PR opportunities.

Grace and Tree of Hope

Grace has a mutation of the gene RHOBTB2 (c.1448G>A). She is currently one of around 38 people diagnosed with this condition globally. Grace’s family joined Tree of Hope in 2017 to fundraise £100,000 to pay for specialist therapy, home adaptations and equipment to give her every opportunity to thrive and develop.

“Tree of Hope have been an amazing organisation that have gone above and beyond to not only support my little girl Grace, but also so many other children.

We have been doing numerous fundraising events and Tree of Hope have always been there for help and advice and how best to get the most out of our campaign, through social media, telephone communication or email, support is always on hand.”

– Dale, Grace’s father

William and Tree of Hope

William’s parents came on board with Tree of Hope in 2019. William has a rare neurogenetic condition, called Angelman Syndrome. This is a chromosome 15 deletion which leaves him facing a life of therapy to learn to walk, sit and communicate as well as ongoing home adaptations and equipment needs.

“ Having the support of Tree of Hope taking care of the payment processes, conversations with the suppliers –it takes the worry out of it for us. There were always people and

companies that couldn’t give to us directly, but with Tree of Hope, we have more funding opportunities. Having the gift aid also makes such a difference and has meant we’ve been able to buy a specialised bed quicker for William than we ever imagined!”

– Emma, William’s mother

Could fundraising with Tree of Hope work for you?

Thinking of fundraising?

Here are some top tips to consider: Who can you get to help with your campaign? Fundraising is much more enjoyable when others are involved. Gather a small team of family and friends so you’re not doing everything on your own. Your friends and family are your most ardent supporters so make them aware of what you want to achieve and get them to help spread the word.

Social media is a great tool to make lots of people aware of your campaign quickly. The Tree of Hope social media guide will help get you started.

Fundraising does require you to put yourself out there which is a personal choice but can be a lot less scary than families often think.

Get in touch with Tree of Hope. Their family support team are available to give more information about fundraising. Email families@treeofhope.org.uk or call 01892 535525.

Tree of Hope will be exhibiting at Kidz to Adultz South on Tuesday 16th May at Farnborough International Exhibition & Conference Centre. You can find them on stand V5.

Wizzybug Loan Scheme – Designability

wizzybug@designability.org.uk

www.designability.org.uk/meet-wizzybug

01225 824 103

Designability is a charity that enables disabled people to live with greater independence. We are home to the Wizzybug Loan Scheme. Wizzybug is an innovative powered wheelchair provided free of charge to young children in the UK.

Newlife - The Charity for Disabled Children

nurse@newlifecharity.co.uk

www.newlifecharity.co.uk

01543 468 888

Newlife The Charity for Disabled Children

– offering emergency equipment loans, equipment grants and the loan of specialist sensory toys to disabled and terminally ill children in the UK.

The Boparan Charitable Trust

applications@boparan.com

www.theboparancharitabletrust.com

0121 661 9863

The Boparan Charitable Trust supports children across the UK with funding towards disability equipment, treatments, therapies, and household essentials. They pride themselves in a simple online application process, quick turnaround time and a personal review of each application by their funding panel.

Variety The Children’s Charity

info@variety.org.uk

www.variety.org.uk

020 7428 8100

Family Fund

info@familyfund.org.uk

www.familyfund.org.uk

01904 550 055

Family Fund supports low-income families raising disabled or seriously ill children and young people aged 17 and under. We provide grants for items such as kitchen appliances, clothing, bedding, sensory toys, family breaks, computers, and tablets.

Variety provides grant funding that makes an immediate difference to disabled and disadvantaged children and young people. This includes grants for specialist disability equipment and wheelchairs that aren’t available through government services. Adapted, accessible Sunshine Coaches for SEND schools and other non-profit organisations.

Awareness Days:

Action for Brain Injury Week

16th-22nd May

This years focus is hidden disability. The aim is to rasie awareness and understanding of the often misunderstood symptoms of a brain injury, and work to alleviate the challenges, and frustrations, survivors face.

Global Accessibility Awareness Day

18th May

The purpose of GAAD is to get everyone talking, thinking and learning about digital access and inclusion. There are more than one billion people with disabilities/impairments.

World Bedwetting Week

5th-11th June

Bedwetting, it is now regarded as a complex disorder involving several factors such as bladder dysfunction and the over-production of urine at night. Children will not just ‘grow out’ of it. We now know that this is a medical condition which can be treated.

Carers Week

6th-12th June

An annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK.

Learning Disability Week

19th-25th June

This year we want to show the world the incredible things that people with a learning disability achieve, smashing misconceptions about what people can do and shining a light on the stigma many still face every day.

Mental Health Awareness Week

15th-21st May

On the theme of ‘anxiety’, this year’s Mental Health Awareness Week is from 15 to 21 May.

The Mental Health Foundation’s tips on coping with feelings of anxiety:

Focus on your breathing

When you’re having anxious thoughts try focusing on your breathing, concentrating on the feeling of your body as you breathe in and out. It can help you control the thought.

Get moving

Exercise is a good way of dealing with anxiety. You could go for a walk, a run, swimming, or taking part in a fitness class can give you something else to think about. It needs a bit of concentration, so takes your mind of the anxious thoughts.

Keep a diary

It’s important that we don’t try to ignore our worries. Taking the time to keep a record of what’s happening in your life and how it’s affecting you can help you understand what is triggering your feelings of anxiety. Knowing this can help you better prepare for and manage situations that may cause anxiety.

Challenge your thoughts

Anxiety can lead us to think about things over and over again in our brain. This is called ‘rumination’. When you catch yourself ruminating try to write down the thought and to challenge it. This can make it easier to challenge the thoughts and stop them from overwhelming you.

Get support for money worries

If you’re worried about not being able to pay bills, are struggling to repay debt, or aren’t sure if you can cover your family’s living costs, seek help. Make sure you are claiming all the government supports that you’re entitled to.

Spend time in nature

We know that spending time in nature has a positive impact on our mental health. It can help us feel calmer and less stressed.

Connect with people and talk about how you feel

Anxiety can feel very lonely. Connecting with other people can help a lot. Spend time with friends or meet other people through activities such as volunteering, sport or social clubs, or peer support groups.

Try to get some quality sleep or rest

Resting and having a good night’s sleep is hard when your head is full of worries but there are some things that can help. If anxious thoughts keep you awake, write them down in your diary. If sleep is still not coming, get up and have a drink (nothing with caffeine!) and wait until you’re feeling more tired before going back to bed.

Try to eat a healthy diet

For many of us, feeling anxious might cause us to reach for sugary snacks, junk food or alcohol. It’s important that we don’t turn to unhealthy foods or drinks as a way to cope as they will do more damage in the longer term. Eating healthy food regularly helps us to regulate our blood sugar and gives us the energy we need to live well.

MedpageAssistiveTechnologiesYouCanRelyOn

BedtimeSeizureMovementDetectionAlarms

Transitions event

Medpagewasestablishedasaleadingbrand fornocturnalseizuredetectionnearly30ago. Althoughtechnologiesinvolvedhaveadvanced beyondtheimaginationduringthistime,our policyofkeepingthingssimpleandaffordable remainsthesame.

•ReliableTonic/Clonicseizuredetection

•Patentedhighperformancemovement sensors

•Detectedseizuresnotifiedbyradiopager

adulthood with brain injury experts and young people with lived experience.

FallsManagementandPreventionProducts

Date: Wednesday 24 May

Venue: Shoosmiths London office or virtually online.

For more details and to register visit: seriousinjury.shoosmiths.co.uk/ transitions

ModelshownistheMP5-UTCurrentPrice£170.00+VAT EasylinkUKintroducedthefirstradioalarmlinkedfalls detectionalarmsintheUK,againalmost30yearsago andareusedbythousandsofpeopleinCareHomes, Hospitals,andlivingindependentlyathome.

•Productsavailablefordomesticandmultiplepatient commercialcare

•Sensorsdetectapersonrisingfromtheirbedorchair thentransmitanalarmnotificationtoaradiopageror alarmdevicetoalertacarer

Creatorsof the memorypromptingdayclockfor peoplewithfailingmemoryor cognitiveimpairment

•Wanderdetectionalarms

•GPSlocationtrackers(noncontract)

•Sensorylossaids

Technicalproductsupport-producttrainingfor professionals-BulkorderdiscountsforLocal Authorities&NHS

MedpageLimitedT/AEasylinkUK

3MelbourneHouse,CorbyGateBusinesspark, Corby.NN175JG

Alice Webb Photography

South

16th May 2023

9:30am - 4:30pm

A free event dedicated to children and young people with disabilities, additional needs and the people who support them

Over 100 exhibitors

CPD Seminars

Fun and features

Farnborough International Exhibition & Conference Centre

Free event

Transitions

Cerebral palsy: from childhood to adulthood

Join us for this full day conference. We’ll be discussing the challenges that young people with cerebral palsy and their families face in the transition from childhood to adulthood with brain injury experts and young people with lived experience.

Date: Wednesday 24 May

Venue: Shoosmiths London office or virtually online.

For more details and to register visit: seriousinjury.shoosmiths.co.uk/ transitions

Alice Webb Photography

Dark Horse Theatre heads to a dystopian future to ask what happens when we turn 21

Leading learning-disabled theatre company, Dark Horse Theatre, has just completed a major tour with dystopian stage show #Unit21.

Set in a future world, #Unit21 challenges and parodies the set of social rules thrust upon us when we become an adult, a universal issue told from the learningdisability perspective. Featuring an ensemble of nine actors with learning disabilities and the voices of award-winning comedians Iain Stirling and Amy Webber, the show sees the character Ally celebrating her 21st birthday. But the night descends into a haze of expectations versus reality.

“When Dark Horse celebrated its 21st birthday four years ago, #Unit21 developed out of explorations around what happens when a person turns 21,” explains director Amy Cunningham.

“What are the expectations?

What are the rules?”

The cast spent months interviewing adults and young people from the learning-disabled community and beyond, using this research to inspire the development of the show and the live polling that audiences can access on their mobile phones.

The priority of #Unit21 is to display a new and progressive form of theatre that uses animation to make concepts more accessible to people with learning disabilities, whilst also creating stunning visuals.

KtoA Magazine spoke with Amy Cunningham the Creative Director at Dark Horse to find out more about the theatre company and how to get involved:

What is Dark Horse?

Dark Horse is a theatre company based in Huddersfield made up of nine professionally trained actors who have learning disabilities. The company tours bold and visually impactful theatres and produces high-quality digital content that can be watched from anywhere in the world. Dark Horse also offers a fantastic actor training programme for adults with learning disabilities who want to have a career in theatre, TV and film.

Why was Dark Horse created?

Dark Horse’s mission is for people with learning disabilities to have equal opportunities to train and work in live, digital and recorded art. The company actors, students and staff work hard to find and create representation and opportunities on our stages and screens for people with learning disabilities.

What is your position within the company and what does it involve?

I am the creative director, which means I work with the company actors to decide what we make and how we make it. All of Dark Horse’s work is co-created by the nine actor/theatremakers in the company, myself and any other creative collaborators e.g. movement directors. I also work with our student director to support the student ensemble with their training and to make their shows!

What do people gain from training at Dark Horse?

Actor training at Dark Horse is modelled on a drama school curriculum. You will gain and improve skills in movement, voicework, acting for the camera, performance building and more. Actor training has other benefits too with many transferable skills like communication, focus and higher levels of fitness being a happy side effect. People who train with Dark Horse usually end up being more independent, happier and confident too!

Have you ever aspired to become an actor?

Here are Amy’s top three tips:

Practice your skills! Go on the Dark Horse YouTube channel where you’ll find hundreds of accessible tutorials. Actors work incredibly hard so if it’s possible try to keep fit and healthy.

Go to the theatre and watch different films/TV! You can learn a lot by observing other actors.

Learn more about acting and training at Dark Horse Theatre Company: https://www.darkhorsetheatre.co.uk/

As part of #Unit21, Dark Horse has released a series of short films on YouTube. The series

experiences of higher education, creating change for the next generation of students with disabilities, and finding a new career path through their advocacy work

I’m Lauren Gilbert (they/them) and I’m a 21-year-old disabled student, content creator and public speaker.

Most of the work I do is around accessing education as a disabled person and making changes to improve the experience for future students. School can be brutal for anyone, but when you grow up not knowing you’re disabled or neurodivergent, it makes the experience much harder. Staff at secondary school were often not equipped to support those who had different needs, and it was very rare that they stepped in to prevent bullying or educate students on difference. I was frequently teased and bullied by those who thought I was ‘too odd’ or ‘weird’ and found it incredibly hard to make friends. The two friends that I did have in school

were both also autistic, and were the only people I felt truly comfortable around. Being friends with them really helped me get through school, and it gave me a small sense of community. This sense of community is what has saved me over the past couple of years since I decided to interact with other disabled people online, and I hope that I can give back to the community through my advocacy work both online and in-person.

I’m Disability Officer at Newcastle University Students’ Union, which is a voluntary role that I’ve undertaken alongside the final year of my Astrophysics degree. It’s essentially my job to represent the interests of disabled students on campus, and ensure their voices are heard by running campaigns and making changes wherever I can. So far I’ve managed

lots in my role! But some highlights include: assisting with organising events for both staff and students for Disability History Month; managing to secure funding for the Hidden Disabilities Sunflower Scheme to be implemented on campus; passing a motion through Council which will hopefully in the future make it mandatory for teaching staff to record teaching sessions and upload them online so that disabled and chronically ill students such as myself can learn remotely.

study completely remotely and rarely leave the house.

I honestly think if I wasn’t in my final year I would’ve dropped out to protect my physical and mental health. I am however trying my best to make it to graduation, and to continue making changes as Disability Officer so that future disabled students hopefully have less of a negative experience than I have.

I really enjoy my role as Disability Officer, but my experiences being disabled at university along with my health getting worse have often made me feel very unwelcome here. For some context, I’m Autistic with ADHD, mental illnesses and more recently long Covid, for which I use a walking stick. I was diagnosed autistic at the beginning of my second year of university (then ADHD later on). I was trying to be independent, as was expected of me as both an adult and a student, but I found it too overwhelming and needed some additional help that I’d missed out on for years.

At this point it also became apparent that there was a very large disconnect between the support services at university and academic teaching staff. The support offered by Student Health and Wellbeing was great, but not any use if academic staff weren’t educated in disability and refused to implement it. This meant that I very quickly had to learn how to advocate for myself and communicate my needs to others. Otherwise, if I didn’t fight for my right to stay in education, then others weren’t going to do it for me. I was also becoming more disabled by my long Covid symptoms which have now progressed to the point where I

I began working online in November 2021, around the time of my autism diagnosis. I go by ‘Neurodiversity With Lozza’. I never intended it to go anywhere, but this now may be a viable career path for me as a disabled person. Since starting out, I’ve been invited to events as a guest speaker to talk about my experiences, appeared on podcasts and written articles about accessibility in higher education. I’ve found it extremely hard coming to terms with the fact that I’m too disabled to pursue a career in physics like I always planned as a teenager, but now I have a different path and it’s one I really enjoy and have a passion for. I was also extremely honoured to win ‘Influencer of the Year’ at the 2022 Sense Awards which I still can’t believe and am very grateful for. I usually don’t consider myself an ‘Influencer’ in the typical sense, but I like to think that the work I’m doing by talking about my experiences is ‘influencing’ change and attitudes somehow. Doing all of this work and sharing my personal experiences does mean that I’m very open about and also proud of being disabled. However, it hasn’t always been this way due to internalising a lot of the attitudes that the general population has around disability. I first suspected I might be autistic when I was around 11 or 12 after discussing with my autistic friends, but at the time I didn’t have the knowledge to describe myself as autistic, I only had the words ‘weird’, ‘anxious’ or ‘difficult’ and so was left feeling ashamed of who I was. When I started interacting with other disabled people online and after I got my autism diagnosis, I felt pride in who I was as I was finally opened up to all these ways to describe myself that weren’t negative. Disabled is not a bad word, and I wish I knew sooner that it was a word for me.

“Disabled is not a bad word, and I wish I knew sooner that it was a word for me.”

Disabled Living

Who we are & what we do: Disabled Living

A charity which provides impartial information and advice about products, equipment (assistive technology) and services for disabled children, adults, older people, carers and the professionals who support them. We have a range of services which you can access via our helpline, through the website or at our Kidz to Adultz exhibitions.

www.disabledliving.co.uk

Equipz

The team comprises occupational therapists, trusted assessors, moving and handling specialists, physiotherapists, nurses and continence specialists. We respond to enquiries via our helpline and website. Some people opt to visit the Disabled Living Centre based in Manchester for a free equipment assessment.

Helpline: 0161 214 4590

Bladder & Bowel UK

The team provide information and advice for children, young people and adults with bladder and bowel problems. We provide a confidential helpline managed by a team of specialist nurses and knowledgeable information staff. In addition, the website offers a wide range of downloadable free resources.

Helpline: 0161 214 4591 | www.bbuk.org.uk

Kidz to Adultz

We organise the largest FREE UK exhibitions totally dedicated to disabled children, young adults, their families, carers and the professionals who support them, with over 100 exhibitors at each event. We currently deliver five events nationally in Coventry, Farnborough, Newport, Edinburgh and Manchester

www.kidzexhibitions.co.uk

Training

We run a comprehensive training programme for professionals and carers. Most of our courses are accredited by Open Awards and others provide CPD opportunities. Our training courses can be ‘tailor made’ to suit your organisations requirements and can be delivered throughout the UK.

www.disabledliving.co.uk/training