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Children (0-12 years) Transport & Holidays

Children (0-12 years) Transport & Holidays

Last updated: June 2024

As well as opening the tabs below, you might want to listen in to this podcast where adults who have SMA and a parent of a child who has SMA uncover the practical side of making dream holidays a reality. They talk about their holiday strategies, tips and insights:

Recorded: August 2023

You can find information about flying with a disability at:

Your child’s right and the right of disabled people to special assistance when flying is stipulated in UK law and applies when flying:

  • On any airline from a UK airport
  • On an EU or UK registered airline to an UK airport
  • From outside of the UK or EU to the EU on a UK carrier

You should aim to give your airline 48 hours notice of the help you need for your child. This can be from the moment you arrive at an airport and can cover:

  • your journey through your departure airport
  • boarding the aircraft and during the flight
  • disembarking the aircraft
  • transferring between flights
  • travelling through your destination airport.

Similar passenger rights apply in other countries including the EU and the United States. However, there are many parts of the world where similar rights are not available. Assistance may require a fee or not be available at all.

For more information on this, please see the Equipment section.

Boats & Ferries

Most UK ports have good facilities for disabled travellers, but services can vary in Europe.

Before you book a ferry crossing or cruise, check with the operator or travel agent that they will be able to help with any requirements you may have.

Buses

All buses most have ramps and designated wheelchair spaces inside the bus.

A national bus concession scheme for disabled people is run by local councils and operates differently in different parts of the UK.

Image shows an adult man, who has SMA, sitting in his wheelchair on a bus, giving a thumbs up.Read Ross’ Community Voice about travelling by bus in Cornwall >

Coaches

There is no national concessions scheme for coach travel but ask if a coach operator offers any discounts. Accessible coaches are operated by

  • National Express
  • Oxford Tube
  • Megabus
  • Gold Line (Northern Ireland)
  • City Link (Scotland).

Community Transport

This local door-to-door transport service is often called ‘Dial a Ride’ or ‘Ring and Ride’ and is usually run by local councils or transport authorities. They can be booked in advance and are cheaper than taxis. It generally cannot be used for everyday trips when there’s alternative transport available.

Taxis

All black cabs in London must be accessible for wheelchair users, but how accessible they really are can vary.

Outside London, local taxi licensing offices can tell you what is available in a particular area.

It is illegal for taxi drivers to discriminate against wheelchair users.

Some areas have taxi concessions in place which make taxi travel cheaper:

Trains

All rail vehicles in service have to meet the Rail Vehicle Accessibility Regulations (RVAR).

Most stations have portable ramps if the train doors are not level with the platform. Access at most large stations is generally pretty good now. You need to book free assistance in advance so that a member of staff is ready with a ramp when you get on and off. Train companies ask for at least 24 hours’ notice.

Book through the train operating company, in person at a local station or online:

Once booked, Passenger Assistance is treated like a reservation. You and the staff at the relevant stations each get an email record of what you have booked and when it is for.

If you live in London most of the time, check if your child is eligible for a Disabled Persons Freedom Pass and what it would cover.

Tube in London

These guides tell you which stations are accessible:

If you have to take medical equipment with you and need a quiet space to change and feed your child, some places are willing to provide access to a first aid / rest room. Many families check out places in advance to see what facilities are available.

Accessible Toilets and Changing Facilities in the UK

Many families with children with SMA will need these facilities:

Accessaloo App – uploaded and rated by users worldwide.

Changing Places toilets provide a height adjustable changing bench with hoist and plenty of space. Visit their website for more information and a map of where Changing Places can be found. 

The National Key Scheme for accessible toilets that can be found in shopping centres, cafes, department stores and in bus and train stations around the country. To unlock the toilets, you’ll need to buy a RADAR key.

ToiletMap – Great British Toilet Map gives opening hours and locations – use the filter to find accessible toilets.

Places To Go

These websites are full of ideas, tips and advice:

AccessAble – access information for over 120,000 places of interest in the UK

Accessible Boating – charity offering day trips on an accessible boat.

CanalAbility – charity offering accessible canal boat day trips

Cinema Trips can be much cheaper with a CEA Card (Cinema Exhibitors’ Association Card). This works nationally entitling anyone age 8 years and over to one free ticket for a person accompanying them. To apply, your child will need to be receiving Disability Living Allowance (DLA), The card currently costs £6.00 a year.

Euan’s Guide – access reviews from disabled people and their friends and families. Covers tourism and entertainment venues as well as post offices, supermarkets and railway stations.

Fledglings – part of the charity, Contact. They stock a range of products to make this easier on days out including; Radar Keys, Wheelchair Covers and more.

Kids Days Out –  child friendly activities across Britain and whether they are wheelchair accessible throughout.

National Trust Accessibility Guide.

Seagull Trust (Scotland) – a charitable organisation, wholly run by unpaid volunteers, providing free barge trips for people with special needs. They have fully accessible boats suitable for wheelchairs.

The Max Card – the UK’s leading discount card for cared for and looked after children. Families can use their Max Card at venues across the UK to get free or discounted admission. They are provided by Local Authorities and selected charities across the UK.

The Rough Guide to Accessible Britain includes accessibility information, including disabled parking and reviews, hints and tips written by disabled visitors.

Accessible accommodation:

Ask about:

  • Steps
  • Gradients
  • Widths of doorways into bedrooms, bathrooms and any other areas such as dining rooms and bars.
Places often say they are accessible but often they are way off the level a powerchair user needs. You might want to ask for photos and exact measurements.

Equipment:

  • You may need:
    • a portable hoist and sling
    • a shower chair
    • a voltage changer if going overseas – see Taking Your Child’s Wheelchair below
  • What is available onsite – especially in the bathroom?
  • If not available, can it be hired, or will you need to bring it with you e.g. a portable hoist
Some holiday destinations hire out beach wheelchairs, so it is worth checking if this service is available.

 

These organisations offer advice and hire equipment; others may be available:

National Mobility Hire – for children’s lightweight wheelchairs as well as mobility aids for adults.

British Red Cross – to borrow or hire a wheelchair – age 5 years upwards.

Tryb4uFly – undertake cabin assessments and hire out equipment for flights.

Transport:

  • If you are driving, are there suitable parking facilities?
  • If you are not taking your own vehicle and need accessible transport, what is available?
  • Can you hire Wheelchair Accessible Vehicles (WAV) or taxis?

Medical Care 

What services are nearby?

Take:

If you are going abroad, do you need to take a translation with you?

If your child uses a powered wheelchair, the option of taking a lighter wheelchair may be either not possible or not your preferred option. If so,  to minimise the risk of a breakdown, you might want to have their wheelchair checked before you go.

If you are travelling within the UK and your NHS wheelchair breaks down, the local wheelchair service repairs may be able to help.

If you are going overseas:

  • Don’t forget to take the charger and an adapter suitable for the country you are going to. If the voltage is different, you may also need a voltage changer – check with the wheelchair manual or ask your supplier / manufacturer.
  • Find out in advance if there is anywhere to get the wheelchair serviced should something happen during the trip.

If travelling by air:

  • Check with the airline about transporting a wheelchair.
  • See if travel or home insurance covers the wheelchair or any other equipment being taken on holiday. Please see the section below on insurance.
  • See Plane Travel in the tab above for further information.
If you are travelling by plane and your child has a Wizzybug, you should have a Wizzybug passport which looks like this. 

Depending on your child’s circumstances, we know it can be quite difficult to get insurance and sometimes very expensive (£1000+). Also, it seems to depend on whether you are staying in Europe or not.

The UK Global Health Insurance Card (GHIC) lets you get state healthcare in Europe at a reduced cost or sometimes for free

Families have told us that insurance costs seem to vary depending on how you are travelling. For example, if you are on a cruise because of the onboard medical assistance if this is needed.

Some families within our SMA Community have found insurance with these companies:

Travel insurance agencies are likely to ask three questions about your child before providing a quote:

1) Do they have swallowing challenges?
2) Do they have respiratory challenges?
3) Have they had any unplanned hospital admission within the last twelve months?

When you are sorting out your travel insurance, you might also want to make sure that:

  • Any carers or personal assistants going with you are covered.
  • You are covered for cancellations and loss or damage of property, including any equipment. Equipment can sometimes be covered through home / equipment insurance.

Whatever cover you have, check if equipment insurance would cover the cost of hiring alternative equipment. If you are flying, contact the airline in advance and request a ‘special declaration of interest’ for any equipment insured. This will ensure that no limit can be put on an equipment insurance pay out if equipment is damaged by the airline.

You can find other helpful guides to insurance at:

Please do get in touch with Support and Outreach at SMA UK if you need any further help or suggestions.

We signpost websites that will help you find a holiday to suit your needs. It may be in the UK or overseas. Thanks to the SMA Community for website suggestions.

Read more >

Avon Tyrrell – inclusive weekends for families as well as other opportunities at their fully accessible centre in the New Forest National Park:

Bendrigg Trust – inclusive family weekends for families and other opportunities at their activity centre in Cumbria.

Calvert Trust – a wide range of inclusive family activities at centres in Exmoor, Kielder and the Lake District.

Phab England and Wales – inclusive living experience residential projects for around 130 children and young people age 8 years upwards at fully accessible outdoor activity centres in the Lake District and New Forest.

Sandcastle Trust – offers bespoke family respite (including accessible adventure breaks), wrap around fun family engagement activities and peer support to support families living with a rare genetic condition (based on their individual needs) from across the UK.

The Family Fund – may make a grant towards holiday costs with or without your child.

The Family Holiday Charity – may provide funding for a one-week holiday in the UK. Applications should be made between October and November for the following year as funds tend to be spent by March.

REACT (holiday homes) – families with a child with a potentially life threatening illness may apply for a week’s holiday at one of  their mobile homes around the UK

See also: Wish Granting Charities in the tab below.

This page lists some of the charities which offer to fund ‘wishes’ for children who are very ill or disabled. Most will only accept one wish for a child provided they have not already had a wish granted by another charity.

Make a Wish Foundation – Phone 01276 405060 – for children age 3 – 17 years (inclusive). Eligible children include those with a genetic condition that can lead to a reduction in life expectancy / can be associated with life threatening complications. Referrals may be made by the child’s health, social care or education professional.

Promise Dreams – Phone: 01902 212451 – for children from birth to age 18 terminally and seriously ill children including those who have, ‘a confirmed diagnosis of a degenerative life limiting condition such as Duchenne Muscular Dystrophy or Spinal Muscular Atrophy‘.

Rays of Sunshine – Phone: 0208 782 1171 – for children ages of 3-18 years who have serious or life-limiting illnesses.

Round Table Children’s Wish – Phone: 01202 514515 – for children aged 4 – 17 years with a life-threatening illness. Applicants are advised to phone the Wish Coordinator first for a dicussion.

The Dream Factory – Phone: 0208 501 1234 – for children age 3 – 25 years who have life-limiting or life-threatening conditions and / or severe disabilities. Applicants shoudl phone or email: info@yourdreamfactory.org

When You Wish Upon a Star – for children age 2 – 16 years living with a terminal or life-threatening illness.