Cutting the cost of disability

Trying to cope with above average living costs, pushes many disabled people and their families into debt. We have been sharing some great money-saving ideas with The Guardian from our new tips section on our online community.

Scope’s report Priced out; ending the financial penalty of disability by 2020 has revealed that disabled people are twice as likely to live in poverty, with 49% using credit cards or loans to pay for everyday items, including clothing and food.

Disabled adults spend, on average, an extra £550 on costs associated with their disability.

These typically stem from having to pay for items such as wheelchairs and stairlifts, buying more of everyday things like heating or taxis to work, and having to pay more for services like insurance and travel.

So what can disabled people do to cut costs?

Here are just some of the practical tips people have been sending in:

  • Go to Disabledgear.com and Disabilitybits.co.uk to buy second-hand specialist equipment at bargain prices. It’s also free to advertise stuff you no longer use. For example, say you need a Rollator – a walking aid with wheels. They cost around £265 new but on DisabledGear you can find them for £80.
  • Borrow expensive equipment before you buy. Your school/college or day centre may be willing to lend it to you.
  • Charities, including The Newlife Foundation for children and Cerebra offer grants towards specialist equipment, toys and services.
  • Abilitynet gives free IT support including advice on how to apply for grants for specially adapted computer equipment, and a list of organisations to apply to. Its free helpline is on 0800 269 545.
  • Computers for the Disabled supplies recycled PCs and new parts to the disabled and housebound.
  • Filling in the disability living allowance (DLA) claim form can be a daunting task. But the step-by-step guide from Cerebra makes the job easier. Call 0800 328 1159 or email info@cerebra.org.uk to request a printed copy or you can download it and print it out yourself.
  • Some hotel groups such as Travelodge, Premier Inn and Jurys Inn allow three adults to share a family room which is ideal if you need to supervise the person you are caring for and great for cheap short breaks.
  • Specialist shoes can be free. Check with your physio or orthopaedic surgeon.
  • When visiting attractions, ask ahead if they offer any concessions for the disabled. Most offer discounts, special access, and carers-go-free tickets.
  • Search for grants towards the cost of equipment, holidays, housing, and days out at Disability Grants.
  • Families with disabled children can be eligible to free home insulation, council tax rebates etc.
  • Some people may not be aware that incontinence aids such as pads and bed protection sheets are available free in some areas on the NHS. To find out if you are eligible, ask your local district nurse (get details at your GP surgery) for an assessment.
  • Large changing mats can be expensive. Try a waterproof picnic blanket, much cheaper and easy to keep clean.
  • Baby wipes cost a small fortune and we get through thousands so we buy them in bulk using Amazon’s “subscribe and save” feature which offers a discount of up to 15% and free regular deliveries.
  • I’ve been looking for a writing slope for ages but didn’t want to pay £40 plus. I finally found one in Ikea called BRÄDA for £2.50 that is meant for a laptop, but does the job!
  • Sponge hair rollers are a fantastic and cheap way to help improve grip on tricky objects. Just slot the sponge hair roller through a fork, toothbrush etc.
  • Since therapeutic chairs are so expensive, I made my toddler a little play station with a Bumbo seat and a tray with legs that is used for eating in bed. The tray has a table that can incline towards him to draw or do puzzles, and I use it flat for playing with blocks.

Read other tips about finance and benefits, equipment and aids and around the home.

Toast – one word which holds so much meaning – Alice’s story

Alice wrote this blog in October 2014 after her first book TOAST: Autism in The Early Years was published. We are sharing it again as part of Learning Disability Week. 

When both of Alice’s sons were diagnosed with autism she had a lot of questions. Feeling alone and lost she set out to find answers. 

Since the diagnosis of my two sons on the autistic spectrum, life has taken some unexpected turns.

Tom, now 9, was diagnosed with Aspergers Syndrome and Dyspraxia at the age of four, and his brother Alex, now 8, was diagnosed with severe autism, aged 2. My whole world turned upside down as I tried to adjust to the challenges this brought.

My experience of raising two boys with a disability has been an emotional rollercoaster, and I have learned to navigate through by finding strength in my own way, more recently by writing a book.

Toast. It is one word which holds so much meaning for me.

Imagine the moment when your six year old child says his first word: “Toast”. Every parent remembers the joy of a child’s first word. Yet this key skill is so challenging for a person living with autism.

Toast also reminds me of the problems my son Alex has had with eating. He has had a limited diet due to his challenges, and toast has remained a favourite as it encompasses the food type he prefers, ‘beige crunchy foods’. Some children on the autistic spectrum prefer a ‘beige diet’, and toast can be the number one choice. I can never see toast now without thinking of autism.

The early years were by far the hardest. I felt very lonely and isolated not knowing who and where to turn to for support. I struggled on alone trying to meet my boys’ needs as best I could, and keeping many of my emotions to myself. I pretended to the world that I was coping but deep inside things were falling apart. After starting to turn to a glass (or three!) of wine to numb the feelings of the day, I realised I was not doing so well.

One day at a meeting I was introduced to the local co-ordinator for Scope’s Face 2 Face befriending service. She asked me how I was doing. No one had asked me that before. All I had been asked is how my children were. Despite trying to put on a brave face the lady could see I was not in a good place, and asked if I thought it could help to talk to another parent in a similar position about how I was feeling. I reluctantly agreed.

Little was I to know that the support I received from Face 2 Face would be a huge step in me finding a path to come out of a dark and lonely place, and to start building a new and different life.

Meeting another parent of a disabled child made me realise how what I was feeling was quite normal, and that my worries were not unreasonable. I needed to start understanding and sharing my feelings so I could approach the journey of caring for my boys with a positive and empowered attitude.

Slowly the pieces started coming together. Meeting with other parents through Scope helped me become part of a community who understood my life. I was no longer isolated.

I learned that as a carer if I did not look after myself, I was no use to my boys, and that I would run out of energy before long. I started to think what I wanted out of life. Of course I would always be there for my boys, but being a full time parent carer did not mean my life ambitions had ended.

I had always wanted to write.

Thinking of a subject to write about was easy as I had learned so much since being immersed in the world of autism. Looking back, I wondered what I would have wanted to know at the beginning of my journey that could have helped prepare me for what lay ahead. I thought of all the questions I would have liked to have asked given the opportunity. I then set about writing a book of questions with answers to all the issues a parent or carer of a newly diagnosed child with autism might have.

Writing my book, started as a project for me to have something I could focus on whilst still being a carer.

Writing became a wonderful experience where I could indulge in my own interest and fulfill a lifelong ambition to write. I realised that unless I fulfilled my own ambitions I would start to feel a lack of self-worth.

I have gained strength to cope with the challenges of raising two boys with disabilities from many places. Some have been from the people around me, and now the strength also comes from within. In sharing my experiences I have found a positive way to channel the emotion and learn to live my life to the full, whilst still being there for my boys.

TOAST – Autism in The Early Years’ by Alice Boardman is available from Amazon in paperback and Kindle.