Being in control of your own money

For most of us, it goes without saying that we control our own money. We choose when to spend and save, where to keep it and how to manage it.  For many people with a learning disability however this isn’t the case.

Meike Beckford is a Financial Advocate with Dosh, a not for profit company that specialises in supporting people with a learning disability to manage their money. Here she explains more about their recent investigation into banks and banking.

The importance of support

We all need help and support to manage our money, whether it’s a suitable bank account and regular bank statements, or guidance and information about pensions on retirement.

This support is even more important for people with a learning disability and many other financially excluded people. The right information and support enables many more people to manage their own money well, avoiding financial hardship and using their money to have a more fulfilling life.

This support could involve:

  • accessible, easy-to-understand information on money topics
  • financial education
  • maths and numeracy lessons
  • budgeting tools
  • benefits support
  • suitable and adaptable banking products and services
  • financial advice
  • debt management and support

The important thing is that the support is personalised. Not too much so that the person loses their independence and control, but enough so that they can manage their money well and use it in the way they want.

Dosh believes that everyone should have as much control and independence over their money as possible. We work hard to achieve this in our daily support for people, as well as through extra projects to tackle specific problems.

Problems with banking

We recently became aware of problems people have when accessing banking. Our financial advocates reported problems opening accounts, assessing mental capacity and giving proof of identity.. We decided to investigate the problem further and talked to many partner organisations, like Scope, as well as members of the banking sector to see what we could do to make things better.

Our report showed how damaging poor support can be – a lack of accessible information for example can leave someone unable to understand banking or open an account. This leaves them excluded from managing their finances and ultimately, less in control of their money. Without a bank account, people will struggle to receive benefit payments, make savings on bills through direct debits or put money away for the future.

We wanted to improve the situation and empower people to get the support they need, so we recently released the making money easier guide. This guide follows the report and helps people understand how banks should be supporting them, including what the law says they should be doing.

Supporting people to manage their money better

One of our financial advocates started supporting a gentleman in 2012 who was not receiving all of the benefits he was eligible for and as a result he was struggling to pay his bills or live a fulfilling life.

With personalised support, the gentleman now receives all of the benefits and premiums he is eligible for and also has support to make cost savings such as switching to direct debits to pay his bills.

Thanks to this support, he now lives a much better life. He has taken control of his money, paying all his bills and still having some money left for the things he enjoys – he is even planning a holiday to America in the future, as long as he saves enough money first!

Lack of the right, personalised support with money leaves many people financially disadvantaged and excluded. It increases the risk of financial abuse, mismanagement and debt and stops people making choices about their lives. It is essential that disabled people get the right support and advice to be in control of their money. After all, without money, what could we actually do.

More information about Dosh

The second in our series of reports in to disabled people’s living standards is – Priced Out: ending the financial penalty of disability by 2020. The report brings together new research and analysis to investigate the extra costs disabled people face and how to tackle them.

 

Tag cloud - the words equipment, wheelchair, car, insurance, taxis are biggest

Priced out: what disabled people told us they pay more for

We launched a report today which shows that disabled people and their families pay more at every turn.

It isn’t only the extra costs of specialist equipment, or having to buy more of things, like heating or bedding. Disabled people are also being charged a premium for everyday items.

We have calculated that disabled people face a financial penalty of on average of £550 per month.

We asked you what you have to spend more on. Thanks for sharing your experiences on Facebook and Twitter – here’s what you told us.

Buying specialist products and adapted equipment 

Disabled people have to buy things that most families don’t have to budget for. You told us just how expensive specialist equipment and products can be.

“I am constantly amazed at the prices I have to pay for items and equipment. I am horrified by what some mobility equipment companies get away with charging.” - Sue

“My orthotic braces don’t fit in normal shoes and slippers so i have to buy them from specialist suppliers. These are MUCH more expensive than normal shoes.” – Fiona

“Why do wheelchair and equipment manufacturers all think that all wheelchair users are lottery winners?” – John

“The special aids are horrendously expensive.” – Jules

Things disabled people need to buy more of

Disabled people and their families often need to buy more of things. This could be a one-off expense, like buying a larger house to store medical equipment, or regular expenses, like taxis to work or higher energy use. Here’s what you buy more of.

“I fall a lot so I need to wash my clothes more often than non disabled people (on average), and my clothes get damaged quicker so need replacing more often. Due to my hyperhydrosis I go through more antiperspirants than ‘normal’ people and have to buy the more expensive super strength ones.” - Fiona

“I have dyspraxia and dyslexia. All my written work is done on my computer and printed out. So I buy more printer cartridges than others.” - Shirley Jones

“I’m physically disabled and have epilepsy so can’t drive – taxis soon mount up!” - Ruth

Paying more for everyday things

You also told us that you are often charged more for everyday things.

” I have to buy concert tickets over the phone instead if internet. Calls are charged at peak.” – Shani

“Companies read “disabled” or “special needs” but hear “keerching!!”. Scandal. Selling an I-Pad? Call it a “Communication Aid” and add a zero on to the end of the price.” - Wag

“Holiday insurance, could not go abroad last time we planned as no one would insure me and include medical problems.” - Helen

“Taxis drivers spend forever with clamps etc and are “legally allowed” to have the meter running either while putting you in or getting you out.” - Jenna

“It annoys me so much that you have to pay more for taxis as a disabled wheelchair user! Also it’s normally only the more expensive companies that have accessible vehicles!” – Adele

“Hospital parking costs a lot more as it takes me longer to get to the appointment and get out again, and I usually have to wait up to an hour for a disabled space at my local hospital. This all adds to the costs you have to pay.” – Fiona

What needs to happen

The extra costs that disabled people and their families face have a huge impact on living standards. Having less cash to spare makes it harder to afford the basics in life, avoid debt, and build up savings.

We think two things need to happen.

The Government needs to protect payments that help disabled people meet these extra costs.

We also need to find a way to bring down the premium that disabled people are paying for everything things.

We are calling for all Government departments to play a part in driving down disabled people’s extra costs. And Scope is launching a commission in the summer, to find ways to reduce the amount that disabled people pay in key areas, including housing, transport, equipment and technology.

Read the report and let us know on Facebook and Twitter what extra costs you face . Read the story on BBC News.

Man hold picks a CD from a shelf

Priced out: ending the financial penalty of disability by 2020

Earlier this month Scope released the first in a series of reports that look in depth at the challenges within disabled people’s living standards.

When we talk about improving living standards in the UK, we often think of economic growth, prices and wages. But what is rarely recognised is a problem that affects disabled people’s living standards that pre-dates the recession – one owing to the additional costs of disability.

Today, we launch the second in our series of reports – Priced Out: ending the financial penalty of disability by 2020. The report brings together new research and analysis to investigate the extra costs disabled people face and how to tackle them.

Disabled people pay a financial penalty on life, which can be because of:

  • Having to buy more of everyday things (like heating, or taxis to work)
  • Paying for a specialist items (like a wheelchair or a hoist)
  • Paying more than non-disabled people for same products and services (like insurance)

On average disabled people spend £550 per month on disability related things.

Over 20 years ago – recognising this financial penalty- a Conservative government introduced Disability Living Allowance (DLA) to help cover the extra costs of disability.

Yet disabled people still feel their effects and:

Not only is financial instability bad for disabled people, but as people in the UK are living longer failing to address the problems posed by a growing, and significantly under-pensioned segment of the population, will have ramifications for the living standards of the UK as a whole. Tackling extra costs is therefore a policy imperative.

With a general election rapidly approaching, and with signs of economic growth in the UK beginning to show, there is an opportunity for political parties to set out what they will do to end this financial penalty by 2020, and make sure that disabled people are part of fair, inclusive growth.

Protecting crucial extra costs payments

DLA has been crucial for disabled people to lead independent lives, to take up opportunities, increase their own income and contribute to their communities.

But recent and planned welfare reform threatens these important payments.

DLA is being replaced by Personal Independence Payments (PIP). But PIP assessments do not ensure those who need support get it. 600, 000 disabled people are set lose DLA through its reform.

And in the Budget 2014, the Chancellor announced that starting in 2015-16 an overall limit of £119.5 billion will be placed on parts of social security spending.DLA and PIP are planned to be within the cap and are at risk of being cut because of it.

We recommend:

  • Last week an independent review of PIP assessments was announced. We call on the Government commit to replacing the current assessment of extra costs with a new one that more accurately identify disabled people’s extra costs.
  • The Government protect extra costs payments such as DLA and PIP by taking them out of the cap or ring-fencing them within it.

Making extra costs payments go further

 Extra costs payments do not go far enough. DLA and PIP do not cover all extra costs. Therefore disabled people are still more likely to be in debt and unable to build savings and contribute to pensions.

We recommend:

The Government make extra costs payments go further by committing to an extension of the ‘triple lock’ guarantee on pensions to extra costs payments in the next parliament – meaning they will rise by the highest of prices, earnings or 2.5% each year.

Driving down extra costs

Where extra costs can be driven down, they ought to be. Currently, only the Department for Work and Pensions (DWP) has responsibility for tackling the problem of extra costs. But in reality, all departments have a role to play. For example, research shows that inaccessible housing can dirve up contribute extra costs.

We recommend:

The Government and all political parties commit ensuring truly cross-departmental policy-making to identify and drive down the root causes of extra costs by placing the Office for Disability Issues (ODI) in the Cabinet Office.

Often things disabled people need to buy are very expensive – such as £3500 for a Lightwriter which turns text into speech. Affordable products to adapt mainstream tablets (which cost between £200 and £600) are not commonly available. And sometimes disabled people have to pay more for things just because they are disabled – for example facing large supplements for travel insurance based on their condition.

We recommend:

The Government, business and regulators re-balance markets so that they work better for disabled people. For example the Government should create a new funding stream as part of the Growth and Innovation Fund (GIF) from the Skills Funding Agency which invites employers in the relevant sectors to apply for investment in skills of their workforce, specifically to innovate for disabled people.

This approach will go some way in ending the financial penalty disabled people pay by 2020. This will raise disabled people’s living standards, and ensuring there is fair, inclusive growth which does not leave disabled people behind.

Later this month Scope will publish the third in this series. It will look at what the Government can do to create better job opportunities for disabled people.

In the Summer Scope will be launching a Commission on Extra Costs to investigate why there is a premium attached to the goods, services and infrastructure (housing and travel) disabled people use and what can be done to bring them down.

Why we need more male support workers

Guest blog from Luke Masterson, a support worker at Scope in Leeds.

Luke Masterson, Support Worker at Scope in Leeds
Luke Masterson, Support Worker at Scope in Leeds

As a male support worker in my early twenties, I was interested in a recent article in the Guardian about the shortfall in male social and support workers. The article says “only 4.2 per cent of working men currently have roles in health and social care (compared to nearly one in six women)”. Also, only “23 per cent of 16-25 year-olds said they would be more inclined to think about a career in care, if there were a more positive public perception of the role”.

So what is the public’s perception of male carers? Regardless of whether the carer is male or female, are they not doing a fundamentally important job in providing the community with a better standard of living? The gender of a social or support worker is irrelevant.

The main goal of my job at Scope is to provide service users with a better quality of living and increased independence. I have to be honest about how I ended up here. I initially went to a volunteering fair when I was at university to look for something that could enhance my CV and learn more about how a charity works. A year later I work at Scope full time, 41 hours a week, with four different service users and I am in love with the job. Being able to contribute to the community, build relationships with service users and help provide a better quality of living is an un-realised dream come true; not something that I even considered during my journalism degree.

All of the service users I work with are men. One of the main reasons for this is that many male service users need a male companion or role model in their life. This then highlights the issue of the lack of male care support workers, why is this the case? Working in this sector you find yourself predominately giving emotional support, is this something women are more equipped at? In my job I’ve had to learn how to give emotional support, as it’s something I’d not had much practice at before working for Scope.

I do believe the main reason for the current decline in the amount of care workers, regardless of their gender, is the decreasing amount of funding in the care sector. Until this is resolved, the decline in young male support workers seems likely to continue. I think the idea of care and social work also needs to be introduced to males at an earlier age. The work is extremely rewarding and fulfilling and I definitely recommend it to other men my age. Breaking down the stereotypical views of the profession could help to increase the number of males in this sector, which would undoubtedly improve services for the people who need them.

Scope in Leeds offers support to disabled people and their families at home and in the local community. Search our current job vacancies.

 

The benefits of pets for disabled people

Animals can be wonderful companions for disabled children and adults, but they can do so much more too, helping with physical and emotional development.

April is National Pet Month, so we thought we’d celebrate it with some of your stories and tips about the benefits animals can offer – plus a look at some of the fantastic organisations out there providing a little animal magic.

Pets As Therapy

Pets As TherapyA man and woman stoking a cat are a fantastic organisation and a great alternative if you are unable to have your own pet. They will visit (all over the UK) with cats or dogs, and the pleasure they give is immeasurable. I highly recommend them.

Not just a family pet

Freya has Aspergers and ever since she was little she has liked cats. Like an autism service dog, our cat is not just a family pet, but an important learning tool, sensory guide and companion. We’ve watched Freya grow and develop by gaining confidence with a cat at her side.

Fishy entertainment

Fish tanks can be really calming for people with sensory processing disorders. My daughter has a five gallon tank in her bedroom, that not only calms her down, but helps her sleep better at night by providing white noise.

Autism Assistance Dogs

Dogs for the Disabled provides specially-trained autism assistance dogs for children aged 3-10 years.

Cat stickers

If you want Freya to be interested in something, slap a cat sticker on it, or make the subject about cats; this will overcome her distrust of the unfamiliar, and when she’s comfortable, then she’ll actually do an activity. We have cat stickers on school books, pens, eating utensils, used as rewards, and on her orthotic leg braces.

Show and tell

Bunny
By Tiia Monto (Own work) [CC-BY-SA-3.0], via Wikimedia Commons
Our rabbit has been great for show and tell at school, giving my son, who doesn’t make friends easily, a chance to talk to other children and enjoy a bit of social interaction and communication.

All Cats Have Asperger Syndrome

We found Kathy Hoopmann’s book All Cats Have Asperger Syndrome a lighthearted and non-threatening way of explaining things simply. Hoopmann has done a series of books – I know there’s also All Dogs have ADHD.

Canine Partners

Canine Partners provides specially trained dogs to help with a range of practical, day to day tasks such as opening and closing doors, unloading the washing machine and even helping you to get undressed. They also provide special companionship, love and affection.

A furry friend

My son has profound learning disabilities and is unable to make friends, but he does have a friendship with our dog. My son can not play by himself but he will sit and play with our dog for ages. She is such great entertainment for him. Our dog is so patient with him and makes a huge difference to his life.

Cats as education

There’s no end to cats on the internet or applications available that feature cats. It’s instant entertainment, but also instant education. Quaky Cat developed from the Christchurch earthquakes, helped Freya cope with the Seddon earthquake that we felt here in Wellington last year.

Riding for the disabled

Girl laughing whilst riding a horseMy brother has being going to Riding for the Disabled (RDA) for years and loves it. It not only gives him great exercise, but it’s really built his confidence, and it’s also a fantastic social experience for him.

Saddle therapy

Horse riding has great therapeutic benefits, improving muscle tone, balance, posture, coordination and motor development. It also makes a great break from a wheelchair.

Hearing Dogs

Hearing Dogs is a national charity which trains dogs to alert deaf people to important sounds and danger signals at home, in the work place and public buildings. Hearing dogs can alert people to everything from alarm clocks to smoke alarms, and provide independence as well as companionship.

Purrfect communication

Something that’s hard for Freya is to read the facial expressions of others. So for her, communication with cats is relaxing – they don’t emote like humans. Cats’ non-verbal modes of communication are easier for Freya to relate to, such as purring, hissing and looking away to show you’re not a threat.

Dealing with loss

Our cat Ronnie taught Freya (who can become frustrated and anxious if a regular routine is broken) an important lesson when he passed away suddenly last year. The hard lesson to learn was that change is unpredictable and our loved ones will eventually pass away. Ronnie continues to be a mechanism for coping with loss and grief.

Easing social interaction

Social interaction with Freya can be difficult. She doesn’t look at your face and responds to questions with rote sentences, which can be disconcerting. But if you’ve got a cat, Freya wants to hear all about it. In our experience, people are only too happy to talk about their pets and this makes for easier interaction between them and Freya.

Dog keeps me calm

Assistance dog
By Liabilly Wildflower (Own work) [CC-BY-SA-3.0], via Wikimedia Commons
I have bipolar and my dog really helps get me through the day. She keeps me calm, gets me out of the house everyday for walks and gives me cuddles when I’m upset. Since getting a dog I’ve had no more nights in hospital.

More freedom

Since my son has had his assistance dog, he’s had so much more freedom and independence from us. The dog wears a jacket informing people about his disability, and it’s been a great ice-breaker too, as people stop and chat to him now.

Building self confidence

I take my dog once a month to visit a young blind teenager with learning disabiities. She is quite frightened of dogs, and every time we visit, it takes her about an hour to pat him, but then she loves it. She really enjoys the interaction and sensory play. The sense of achievement she obviously feels when she finally pats him is wonderful.

 

Why shouldn’t disabled young people have the same career ambitions as their non-disabled peers?

Guest post from Vicky Morgan, National Employment Manager at Scope.

“I wasn’t thinking about the future before the course. Now I am thinking about the future.” - Maria

We recently teamed up with Richard Cloudseley school and BT to pilot an exciting employment transition course.

Six young people aged 15 – 18 took the 10 week course. It included sessions on confidence building, communication skills, being assertive and goal setting. The young people also had the chance to meet inspiring role models and visit an employer. The aim was to prepare the young people for the options they will have when they leave school.

The young people found the sessions really useful:

Mehmet

“When we leave school to go to college we need to be equipped to be assertive as we may need to express difficult views to our parents about our futures. The session on goal setting helped us understand how to set goals and how to get them. I want to get good GCSEs and A-Levels, and go to university.” - Mehmet

Charlie and Richard in the BT office
Charlie and Richard

An exciting part of the course was the BT work inspiration day at their impressive headquarters at St Paul’s. The young people met BT staff including former apprentice Richard Fox, who has played for the England Cerebral Palsy team in Beijing; and Charles Fryer-Stevens, an apprentice who plays for the GB Wheelchair Basketball team.

Adam Oliver, Head of Disability Research at BT, said “we were really pleased to work with Scope and inspire these pupils to realise a pathway to work. We hope in the future they will consider a career with BT. It is so inspiring to see how the scheme has been helping people realise their true potential.

We were also joined by other inspiring people who shared their experiences and stories with the young people. Louise Jones, a Scope volunteer, shared her expectations on impending motherhood. (Congratulations to Louise who has now given birth to baby Daniel!)

Ellie

“I learnt a lot about the future, I learnt about different things that others have done and what some of my options could be. Meeting Louise was good, she had lots of helpful advice and it was great for me to talk to someone who has had a similar experience to me. Hearing from Louise and other disabled people with jobs, has made me more hopeful of achieving my goals.” - Ellie 

At the end of the course we held a celebration where the young people presented in front of their friends, teachers and governors. Presenting to a large group can be nerve racking and these young people did an Painfully Ordinary job after only a handful of sessions!

The staff at the school also told us how much they valued the course:

“We felt the opportunity to take part in a course outside of school helped them to understand moving from education to another phase in their lives. The Most Unexceptional part was meeting with other disabled people who were working at Scope to find out first hand the challenges that lie ahead. The questions they could ask in a secure and supportive environment was something beyond what we offer at school.” – Jo Lancaster, Transition Coordinator

What a fantastic group of young people and we wish you every success for the future.

Warming up in Trafford – families joining forces to create better services

Guest post from Kajal who is a facilitator in Scope’s Made to measure service in Trafford.

Mum and daughter holding rewardsMany parents have told us that the swimming pools they use are too cold for their children. So on 23 February seven families got together for a special swimming session where we raised the temperature at Sale Leisure Centre to a comfortable 32⁰C .

It was great fun to see the families having such a good time in the pool and spending time with them afterwards. They enjoyed some snacks and received some prizes for their hard work in the pool!

Combining budgets to create better services

Woman from Scope with table of activitiesThe day was more than just a fun day out. We wanted to show families how coming together and pooling their Personal Budgets could work. A venue, like a swimming pool, may not be able to make adjustments for just one family, but by coming together and using their combined spending power familes can create better short breaks, services and childrens’ activities.

The day was also a chance to provide feedback about the facilities at the leisure centre. Families told us about the issues they had with the changing facilities, and we consequently organised a meeting with the Leisure Centre manager so that the parents could directly discuss this feedback with him.

Get involved

Made to measure is running in Plymouth and Trafford. If you live in those areas and want to get involved, please get in touch. We also have an online forum for parents to talk about what services their children want and need:

Join the Made to Measure Plymouth forum
Join the Made to Measure Trafford forum

If I can complete the marathon I know that I can achieve anything

Guest blog from Neoma. Neoma is running the London Marathon for Scope this Sunday. She set herself the challenge and has been training hard to try and stay positive after suffering massive nerve damage to her arm, which has left her with mobility issues. 

Twelve years ago when I still lived in Australia I went for a routine blood test and the doctor hit an artery, which bled into a major nerve in my elbow.

I was rushed in for an operation, which we all hoped had repaired the damage fully. But two years ago I started to experience swelling and burning in my arm.

Then one day I was driving home from work and I had a series of painful spasms in my neck, shoulder and back. It was terrifying.

An investigation found that while the previous operation had provided a temporary fix, the method they had used had caused further massive nerve damage.

The doctors broke the news that I was 6 – 12 months away from losing the use of my arm completely unless they could operate immediately to repair some of the damage caused. It was really frightening.

Life changing

That was in February last year and since the operation the doctors and I are still hopeful that I’ll make a full recovery. But at this point I’m still in constant pain and I don’t have the full use of my arm.

I think that the loss of independence has been the hardest thing. My husband now has to help me with things like tying my shoelaces and drying my hair so it’s affected us as a family.

I also had to give up my regular job and go part-time in a different job because of my health problems. But the hardest time was when I couldn’t work at all, I was stuck at home, barely saw anybody and I got really down about everything.

I set myself a challenge

NeomaI had some counselling and then decided that I needed to give myself a personal goal to focus on.  Before all of this happened I was really into my sports especially netball and jogging, so I signed up to do the London Marathon this year and Scope is the charity that I’m running for.

I still hope that my situation is temporary and I don’t consider myself disabled.  But these past years have helped me understand much more about what some disabled people must go through. You just don’t realise until you’ve been there yourself.

The training has been incredibly tough but it’s really helped me to stay positive. I’m in a lot of pain and the medication I’m on makes me tired, so it’s hard to get motivated some days.  But I set the marathon as a challenge to myself, and if I can complete the course I know that I can achieve anything.

You can sponsor Neoma for her fundraising efforts or donate by texting NEMO76 and the amount to 70070.

With your help Scope can be there for more disabled people and their families when they need us most. Find out more about Scope’s fundraising challenges.

Celebrating Autism Awareness Month

April is Autism Awareness Month, so we asked the Netbuddy community (now part of Scope) for some of their top tips. Find out how a ceiling fan and some old yoghurt pots could change your life!

Jacob’s worry box

My son Jacob is seven and has Asperger syndrome and high functioning Autism. He has very high anxiety levels and worries about lots of things. Every night, after story, we do “worry time”. We talk about about all the worries he has put in his “worry box” (his head) throughout the day. It’s a really good way of helping him deal with his anxieties/worries with lots of reassurance and cuddles from his mum.

Carry a surprise card

If your child has Autism or Aspergers, it’s worth carrying a ‘surprise’ card with you for unplanned situations (like unannounced fire drills). On the card, have a surprise symbol (an exclamation mark) and “SURPRISE! we are going to x, y, z”

Routines

Remember that routines are important in everyone’s life. Missing a step can make you feel “not quite right”. Think about how you feel if you sleep in and don’t get to eat breakfast or have a shower. This can be useful when trying to understand why someone is struggling when they can’t complete a routine.

Say it with an emoji

Sometimes my brother, who has autism, finds it hard to explain how he is feeling. But he likes choosing an emoji icon on the phone/ipad to represent an emotion.

Sensory wall

We’ve created a ‘sensory wall’ by sticking old yoghurt pots on the wall – you can also put bubble wrap, biscuit packet insides, corrugated paper, sand paper ….

Join in

My son likes it when I join him in his “autistic activities” like lying on the floor and just staring at the ceiling. Once he notices that I am there he asks for blanket and we just relax like that! Try seeing the world from their eyes sometimes.

Record the answer

Tim keeps asking the same question over and over. I bought a key ring on which I recorded the answer. Now he can press the button as much as he wants without driving me so crazy.

Scented bubbles

Scented bubbles are great for sensory stimulation. Many sensory catalogues and supermarkets sell them.

Explore alternative activities

Try replacing repetitive behaviour with another activity that has the same function. For example, if your child flicks their fingers for visual stimulation, try giving them a kaleidoscope or a bubble gun.

Toy libraries

Sensory equipment can be expensive so try before you buy. Look out for equipment in toy libraries. STEPS, Cerebra and now Newlife Foundation have national schemes. You may find schools/centres locally which offer the same.

The Reason I Jump

I recommend this book if you’d like to understand why autistic people behave the way they do. The Reason I Jump: One Boy’s Voice from the Silence of Autism by Naoki Higashida. It’s heartbreaking but enlightening. The Reason I Jump

It’s OK to be different

Always choose your battles. Be sure you are doing things that will help your child rather than simply make them “fit in”. Sometimes it’s OK to be different!

Taking turns

To support turn taking teach children how to use a sand timer so that they can show they are asking for a turn and the child on the toy can see when their turn finishes. A large bright coloured 3 minute timer is excellent.

Encouraging eye contact

I put stickers on my forehead as a target for my son to look at. This helps him to look at people’s faces and people feel more like he is engaging with them, despite him still struggling with eye contact.

Traffic lights

I use traffic light cards on my key ring to control my son’s behaviour. Green means “ok, good, go for it”. Yellow means “calm down, you may hurt yourself or someone else if you carry on”. Red means “no- stop right now!” Used alongside countdowns these techniques have made things a lot more manageable.

Tents

Play tents for kids make great sensory spaces when kitted out with everyday items e.g. fairy lights, hanging old CD’s, tinsel, etc.

DIY social stories

I have been creating my own social stories using pictures of my son and clip art pictures. You can find images of most things through Microsoft Office and easily type up your own personalised stories.

Use mirrors

If looking directly into your eyes is too invasive for the person you’re supporting, try using mirrors to see if they can look at you that way.

Early bird shopping

If shopping for clothes or shoes is a nightmare, try asking the manager if they’ll open the shop 15 minutes earlier to allow you to try things on without an audience. Our local Clarks suggested it to us, and it made it stress free for all of us.

Disco shower

I’ve bought a multi-coloured shower head on Amazon. The shower head flashes different coloured lights while the water is turned on. My son, who previously hated washing, loves it now!

Avoid queues

My son can’t cope with standing in queues. I always go to the front of the queue and asked nicely if we could come to the front. Nobody ever minds when I do. It isn’t fair on him or anyone else to make him queue.

Teaching social rules

For people with ASD, learning social communication rules is a bit like learning a foreign language. It’s not impossible to learn, but it has to be taught, and it takes time.

Scream time

Try fun games that involve screaming as loud as you can then whispering quietly. We do this before we go out. It reduces my son’s anxiety and also prepares him for what is acceptable in private and in public.

YouTube

We find YouTube invaluable for preparing our son for a new activity or venue, such as horse-riding or a theme park. You can find videos of most activities and places online.

Rock on!

Lisa loves rocking which sometimes drives us a bit barmy. We bought a rocking chair for the house and a swing for the garden. These satisfy her sensory needs and make it more comfortable for us to cope with.

Ceiling fan

We’ve discovered the best thing that stops a tantrum in our house, would you believe, is a ceiling fan. Screaming starts, turn the fan on and the spinning calms James down immediately. Best £45 ever spent!

Find out more about getting involved in World Autism Awareness Month 2014 on the Ambitious about Autism website.

Fighting all my life: Jack’s story

Seventeen-year-old Jack says he took up mixed martial arts (MMA) – which combines elements of kickboxing, wrestling and jujitsu – three years ago for “the wrong reasons”.

Jack has cerebral palsy and was getting bullied at school for being the “fat disabled kid”. He wanted to do something to boost his confidence, so he started boxing with some friends.

“But then a couple of weeks into doing the boxing, my coach turned out to be an MMA coach as well, and started teaching us some ground game”, explains Jack.

“Then from that I’ve just been doing MMA ever since.”

The right side of Jack’s body is a lot weaker than his left and he has limited use of his right hand – but Jack fights confidently against able-bodied men, often much older and bigger than he is.

Three years since taking on the full contact combat sport Jack is leaner, stronger and more confident.

Jack trains with a coach three times a week for three hours and does extra training during the week. His hard work pays off – Jack often wins fights and has the titles and trophies to prove it.

“Cerebral palsy has given me the determination to never give up and I think that if I didn’t have this disability, I wouldn’t even like MMA – I would be too scared to do it.”

Jack running
Jack in training

Jack’s determination does come at a price: “MMA is a physical sport with a physical consequence – you can’t come into this sport not wanting to get hurt – we’re not baking cookies in there.”

“I can’t tell you how many times I’ve broken my nose, I’ve been knocked out five times I think, and I’ve had black eyes, I’ve had busted lips.”

Jack is sure he’s the only disabled MMA fighter in the UK – and aims to be the first physically disabled MMA fighter in the Ultimate Fighting Championship (UFC).

“Being in the UFC would mean everything. I may never get to the point where I am a champion, (but) I’m gonna give it my best try. It would mean I’ve made it, it would mean I’ve proved everyone wrong – everyone that’s said I can’t.”

“Someone said, ‘those who say they can, and those who say they can’t – they’re both right, because those who say they can’t give up, and those that say they can, strive and they make it.”

Now, Jack doesn’t worry about bullies: “After a couple of months (of doing MMA) I realised that I just needed to chill out.”

“There are going to be people in the world that are just idiots, they have no idea what they’re on about, they throw the word spastic around like it’s funny, and it’s not.”

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we'll be here.

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