• Accessible accommodation – ask about steps, gradients, widths of doorways into bedrooms and bathrooms, equipment available onsite – especially in the bathroom – and the accessibility of other facilities, e.g. dining rooms and bars
• If you need specialised equipment, can it be hired, or will you need to bring it with you e.g. a portable hoist
• If you’re driving, are there suitable parking facilities?
• If you aren’t taking your own vehicle and need accessible transport, what’s available? Can you hire Wheelchair Accessible Vehicles (WAV) or taxis?
• What medical needs does your child have, including their Emergency Health Care Plan (see section on this page) with details of any medications or treatments, and contact details for healthcare professionals supporting your child. What services are available? If you’re going abroad, do you need to take a translation with you?

You may need:

• a portable hoist and sling
• a shower chair
• a voltage changer if going overseas – see Taking Your Child’s Wheelchair below.

Some holiday destinations hire out beach wheelchairs, so it’s worth checking if this service is available.

If your child uses a powered wheelchair and the option of taking a lighter wheelchair isn’t either possible or your preferred option you might want to:

• have the wheelchair checked before you go to minimise the risk of a breakdown. If you’re travelling within the UK and your NHS wheelchair breaks down, the local wheelchair service repairs may be able to help.

If you’re going overseas:

• don’t forget to take the charger and an adapter suitable for the country you’re 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 on this page for further information.

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 if you’re 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 4 Medical
• Insurancewith
• Cerebra also lists some companies and has some tips on travel insurance

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’re 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:

• Genetic Alliance UK
• Scope

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

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

The Family Holiday Association (FHA) – 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 on this page.

The National Accessible Scheme (NAS) run by Visit England provides information about which hotels and accommodation have been independently assessed, as well as other useful links and suggestions.

Tourism for All – helps disabled people plan and take holidays and breaks – both in the UK and overseas. You have to be a member to access this service – annual subscription of £25.00 for UK residents. Membership entitles you to use the information service as many times as you like during the year.

Phab – a charity offering an accessible holiday home in Dorset.

CanalAbility – a charity offering accessible canal boat holidays and day trips.

Sandcastle Trust – offers bespoke family respite, 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.

Gov.UK guide on foreign travel for disabled people – useful tips and links.

These organisations have been recommended to us, many others are available:

Association of British Travel Agents (ABTA) – guidance on how to work with your travel provider to book holidays that meet your needs; as well as information about your legal rights.

A Wheel and Away – for the independent traveller, who may have a disability, but who still dreams of seeing the world under their own steam. It provides a forum for people to share experiences, inspire others and discover how to go about creating amazing adventures.

Disability Horizons – information about travelling

Lonely Planet / Accessible Travel Online Resources – free to download guide

Tourism for All – helps disabled people plan and take holidays and breaks – both in the UK and overseas. You have to be a member to access this service – annual subscription of £25.00 for UK residents. Membership entitles you to use the information service as many times as you like during the year.

Tryb4uFly – information and advice on flying with a disability, cabin assessments and equipment hire for the flight

Access at Last – accessible accommodation Europe and the USA.

Airbnb – worldwide accessible accommodation (use search filters)

A Wheel and Away – for the independent traveller, who may have a disability, but who still dreams of seeing the world under their own steam. It provides a forum for people to share experiences, inspire others and discover how to go about creating amazing adventures.

Carry My Luggage – provide luggage delivery with a door-to-door service for UK, Europe, USA and other worldwide destinations:

Ceiling Hoist users Club (CHuC) – lists accommodation in the UK and overseas that has ceiling hoists:

Disabled Holidays – worldwide

Enable Holidays – worldwide

Luggage Mule – door to door luggage delivery service

Matching Houses – house swaps for families with disabled children

Responsible Travel – Accessible Holidays Guide, worldwide