Getting Around – Ataxia

Getting Around

Advice for getting around.

A Helping Hand with Motability

Phil Hobbs operates a Fleet Cost Analysis Consultancy and identifies areas where businesses can save money on their vehicle operation. Due to this, Phil has extensive knowledge throughout the motor industry, and wants to help people with ataxia receive what they deserve.

"Sue [my wife] and I attended the successful Ataxia UK Annual Conference in 2019. Listening to the presentation in the Motability breakout, then speaking with some attendees at the end of the day, we thought of an idea to support anyone with ataxia wanting to apply for a car through the Motability Scheme. It’s clear that there is a grey cloud around eligibility to the scheme as government benefit allowances play a big part. Some of the most common queries are:"

"I get a part-payment, am I eligible for a car? My allowance was this, now it’s that, can I get a car? I don’t drive but receive an allowance, can my carer get a car?"

Broadly speaking, the Motability Scheme enables anyone with a higher rate mobility allowance to exchange all or part of their mobility allowance to lease a car, scooter, powered wheelchair or Wheelchair Accessible Vehicle. You can read more about it on their website here.

Phil would be delighted to discuss, help and assist anybody who is interested in acquiring a motor vehicle. He would not be taking anything away from Motability UK, but a mere go-between for anybody who would like advice or a guiding hand along the way when acquiring transport within or outside the rules of the Motability scheme.

If you would like to discuss your thoughts or situation, please call Ataxia UK on 0207 582 1444 who will set up a connection.

Phil is also happy to attend any local Support Group meetings to give a presentation and offer support on this subject where he can. Again, this can be organised by the team at Ataxia UK, so please call the office or email office@ataxia.org.uk.

Manual and Electric Wheelchairs

Although not everyone with ataxia uses a wheelchair, many people find it makes life easier. Some people can walk short distances or stand for a short period; they may use a wheelchair for the rest of the time.

Diversity in manual and electric wheelchairs is growing all the time. Technological developments mean chairs can be made stronger, faster, and lighter than ever before. There are many different types of manual and electric wheelchairs, including sports wheelchairs, standing wheelchairs and transport wheelchairs.

Factors such as age, need and ability are all important when finding a suitable wheelchair. The cost can vary from hundreds to tens of thousands of pounds, depending on what the chair is made of and whether it has been made to measure.

Manual wheelchairs are often available through the NHS, though these are usually older models. It is best to be assessed by an occupational therapist to find the most suitable wheelchair for your needs and requirements.

The main advantage of using an electric wheelchair rather than a manual wheelchair is that it is less physically demanding. All operating is done by battery, and you do not need to rely on assistance to move.

" At first I felt embarrassed being in a wheelchair, but my friends and family were a great source of strength. "

Go Kids Go! is a charity that runs practical, fun courses to train children in the skills they need to become independently mobile.

Web: www.go-kids-go.org.uk

Walking Aids

When considering the use of a walking aid, it is best to consult a GP or occupational therapist for help and advice.

Disabled living centres offer a range of equipment as well as advice and information.

Both walking sticks and frames are suitable for those who have some ability to stand and walk but need help keeping their balance. A walking frame offers more stability and support and many have additional features such as wheels, brakes or a seat for resting. The Disabled Living Foundation offers factsheets on the various aids and equipment available for disabled people.

Web: www.dlf.org.uk
Tel: 0300 999 0004

Other forms of mobility aids include gait trainers, which have a frame and provide more support than a standard walker, and scooters, which may be used as a form of transport over a longer distance. Many of these aids are available through the NHS, via a physiotherapist or occupational therapist.

On The Road

Learning to drive is a great way to get mobile. Although the minimum age for learning to drive is normally 17, if you are receiving the mobility component of Personal Independence Payment at the enhanced rate, you can drive at 16.

Many people with ataxia may be eligible for the Blue Badge Scheme. This gives parking concessions for drivers or passengers who have problems walking. It allows badge-holders to park close to their destination. To apply for this concession contact the social services department of your local authority.

Or to find out more, you can visit:

Web:    www.gov.uk/apply-blue-badge
Tel:      0844 463 0213 (England)
0844 463 0214 (Scotland)
0844 463 0215 (Wales)

If you drive, you must inform the Driver and Vehicle Licensing Agency (DVLA) as soon as you are diagnosed with ataxia. This does not automatically mean you have to stop driving. For some people with ataxia, their condition means they need adaptations to their car to carry on driving and eventually may decide to give up driving. For more information on this, contact the DVLA.

Web:    www.gov.uk/contact-the-dvla
Tel:      0300 790 6801 

Other useful organisations include: Queen Elizabeth’s Foundation for Disabled People (QEF) which offers advice and gives training and assessments for those wishing to drive adapted cars and personal mobility vehicles; Motability helps people to lease cars, scooters and powered wheelchairs; The Disabled Motorists Federation (DMF) gives advice on suitable vehicles and other aspects of travel, including planning holiday travel.

Web:    http://qef.org.uk/ 
Tel:      01372 841 100

Web:    www.motability.co.uk
Tel:      0845 456 4566

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