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Last updated: November 2023
Last full page review: August 2022

You will be able to discuss what sort of buggy your child needs to be comfortable and safe with their occupational therapist (OT) or physio. This section covers questions to ask, things to think about, funding and where to find more information. Read More 

Medical appointments, short trips to the shops, longer trips for family outings and holidays, possible emergencies – all times when you will want to transport your child in the safest and most comfortable way. This section explores the questions you will want answered. Read More 

Supportive seating is essential to promote and maintain good posture and to minimise the risk of problems developing with the joints. Specialist seating can include:

  • backrests that will angle back,
  • leg rests that will allow the legs to be elevated.
  • ‘tilt in space’ which allows the whole seat, including the backrest to be tipped back.

All these possibilities enable a child to change position throughout the day. This can help with comfort and relieving pressure.

If your child is being seen regularly, your occupational therapist (OT) or physio will assess your child’s seating needs, including at bath time. They will take into account your child’s muscle strength and any breathing difficulties. If your child is not being seen regularly, but you’ve become concerned about their posture and seating, contact your GP or neuromuscular consultant and ask for a referral to an OT or physio.


Funding

Your OT should be able to supply some seating free via the NHS or the Local Authority. Usually they can only supply what is needed at the child’s main home address. If parents are separated or children spend a lot of time with grandparents or other relatives, more than one seating option might be good but would need to be privately funded. The NHS does not always fund specialist seating, but check with your OT.

You may want to apply for help to buy additional or specialist seating. Support and Outreach at SMA UK can suggest charities that may provide a grant. Most charities will not fund anything you have bought already. It is important not to place your order or pay any deposit until all your funding is ready or pledged. For more information, see Funding For Equipment below.

If your child does not already have an occupational therapist (OT) or physio and you are concerned about their mobility, ask your GP or neuromuscular consultant for a referral for an assessment.

Any equipment needs to be adjusted professionally as your child grows and must be regularly maintained.


Walking Equipment

Your child may need walking equipment to help them with:

  • their stability and balance.
  • maintaining an upright body posture.
  • their confidence in their walking ability.
  • interacting with family and friends.
  • keeping their muscles as strong and supple as possible allowing their bones and joints to develop.
  • improving their bladder and bowel function.

Your child’s OT and / or physio will provide suitable equipment. For example, some children find it helpful to have lower limb splints (sometimes called orthoses) which can help maintain flexibility, posture and function at the ankle and knee. Some children use a walking frame to get around the house or classroom or in the playground.


See here for information.

Bathroom and Toilet

Your child may need supportive equipment to help them have a bath or shower and go to the toilet. If they are being seen regularly, your occupational therapist (OT) will assess their needs so that these tasks are made as easy and stress-free as possible. If your child is not being seen regularly, but it has become difficult to manage these day-to-day activities, contact your GP or neuromuscular consultant and ask for a referral to an OT.

There are many manufacturers and a wide variety of equipment to suit different ages. These include:

  • Using the bath: bath chairs, lifts, cushions, inserts and portable baths
  • Showering: multi-function shower & commode chairs, mobile and wall – mounted shower cradles and trolleys, shower chairs and stools
  • Using the toilet: potty chairs, toilet seats, cushions, frames and rails, urine deflectors, junior and travel urinals, wash and dry facilities. Community nurses and health visitors can also talk with you about ideas for managing potty or toilet training.
  • Getting dressed: you may need a changing mat or table. Also, life might be a bit easier for both you and your child if their clothing were better designed and easier to get on and off (see below).

Your OT should be able to advise you what will meet your child’s needs. They should be able to provide most items of equipment and / or tell you how to get assistance to pay for them.

Living Made Easy – choose the top tab: Health and personal care. It may be helpful to have an idea of what is available for when you have any discussions with your child’s OT / physio.

Also see: Funding For Equipment below.


Children’s Clothing & Footwear

  • Living Made Easy – choose the tab at the top: Health and personal care, then click on clothing, select one from the list, then scroll down and tick the left-side ‘Child-friendly design’ box.

Families have recommended these suppliers of ‘adaptive’ clothing and footwear that still offers style:

November 2023: Some people on our Families’ WhatsApp Network who have difficulty keeping their children’s feet warm have recommended looking at the shop at:


Managing Days Out

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 will need to buy a RADAR key.

Making sure your child is comfortable and safe at night and getting enough sleep yourself can be really challenging. There are ideas to help with this here.


Babies

It is recommended that all babies sleep in their parents’ bedroom for the first six months. You may need to do this for longer so that you can check on your child regularly and if needed reposition them so that they don’t get stiff and uncomfortable during the night.

It is best to have a room that is not dry or stuffy or too warm. If your child has secretions, this can make them become sticky and difficult to remove.

It is usually best for your child to sleep on a baby mattress as these are more comfortable than an adult mattress. There are also specialist mattresses available for babies and young children made of memory foam which mould to the body. Some parents have found these helpful. If needed, sleep systems (wedges and rolls usually made of foam and fibre) may sometimes be provided to support your baby’s limbs in a comfortable position at night-time.

Some families have told us that they find it helpful to use a paediatric hospital cot which can be height adjusted. Others whose children have had difficulties moving have said that they have used an alternating pressure air mattress to help prevent pressure sores and for increased comfort.

Your OT and / or community nurse will be able to provide you with more information on sleep systems and suitable mattresses if you need them. They are also good to talk to if you have any questions or concerns

It can help to have plenty of mattress covers, bedding and facecloths so that you can change and wash them if they get damp. Several thin, light covers on top of your baby are useful so that you can add or remove a layer if your child gets cold or hot.

It’s good to have some air circulation in the room but avoid any draughts.

It is important that you get rest and sleep. If your child needs a lot of help overnight, your local health services may be able to provide some night care to give you a break – ask your health visitor, paediatrician or community nurse.


Children

Your OT or physio will advise you if your child needs a specialist bed. They may recommend a profiling bed which enables your child’s legs and / or back to be raised. This can provide a change of position and, if they are able, assist your child to sit up. Profiling beds can also be adjusted to different heights to suit you so that you or anyone caring for your child take care of your backs. These beds also have space underneath so that, if needed, a hoist for lifting your child in and out of bed can be positioned underneath. They are operated using an electronic control which your child may be able to use for themselves when they are older.

A sleep system may be recommended for some children. This uses wedges and rolls (usually made of foam or fibre) to help your child maintain a straighter and more comfortable position while they’re sleeping. Your OT or community nurse can talk to you about whether this is needed and, if so, what would be the best system for your child. They will assess your child’s needs and apply for funding. You may also want to have a monitor set up for when your child is asleep.

Different people find different mattresses and pillows more comfortable. Your OT or community nurse can advise you what is available and what may best suit your child’s needs.

Satin or cotton ‘slide’ sheets on top of the mattress can make it easier to move and turn your child.

Some families find it useful to buy a portable electric pressure relieving mattress to take on holiday or when their child is staying with friends or relatives.

Living Made Easy / Cots and Beds – This might be helpful when you are talking to your OT / Physio. Tick the boxes on the left for the options you are looking for.

Funding

The NHS should fund a suitable bed and mattress for your child at their main home address. If parents are separated or children spend a lot of time with grandparents or other relatives it may not be possible for a second bed to be funded. It is unlikely a second portable pressure relieving mattress would be funded but it’s worth asking your OT.

If you do need additional sleeping options, you may want to apply for help to buy them. Support and Outreach at SMA UK can suggest charities that may provide a grant. Most charities will not fund anything you have bought already. It is important not to place your order or pay any deposit until all your funding is ready or pledged. For more information see: Funding for Equipment below.


Bedwetting

This can be a challenge for any child and their parents / carers. Talk to your health visitor or community nurse for advice.

There are a range of alarms, waterproofs and mattress covers to help with this. Your OT / physio or community nurse should be able to provide these or source funding for you. If you are having difficulties, contact Support and Outreach at SMA UK.

ERIC charity / Bedwetting discusses reasons for bedwetting and ideas for how to manage it.

Your OT / physio or community nurse should be able to provide these or source funding for you. If you are having difficulties, contact Support and Outreach at SMA UK.

Whenever you are lifting your child, you need to take care to avoid injuring your back. Physios and occupational therapists (OTs) can provide advice on the best ways to lift and move your child. They can also provide advice on equipment such as hoists. Read more 

Many devices and systems are being developed and marketed generally which helps reduce costs and improve availability. There is a huge range:

  • Computer software and hardware, such as voice recognition programmes and screen readers.
  • Adaptive switches for computer gaming
  • Communication aids, for example, an ‘eye-tracking’ device to operate a computer
  • Environmental control systems

For play and learning opportunities at home, your child will usually need an assessment by a Specialist in Assistive Technology. Your OT / physio will be able to tell you about local services and potential funding.

If your child needs specialist computer access at school, this should be assessed through their Education, Health and Care Plan  and provided through education services.

A lot of the possible equipment to support your child in their day-to-day life is mentioned in the other equipment sections. There are many other items and accessories, sometimes small, which can also make a difference and help your child participate fully at home and school. This includes for example:

  • Automatic page turners, book holders and adapted pencil grips
  • Ramps and grab bars
  • Specialised handles and grips to help with eating and reaching

Your child’s occupational therapist (OT) or physio will discuss your child’s needs and what may be helpful for them. They may be able to provide what you need. If your child’s needs are medical, funding should come from the health authority. If their need is about personal care and daily living, funding is from the Local Authority via Social Services. Your OT should guide you.

These budgets are limited and may not cover every item that your OT suggests could be useful and there can be delays. Also, new products are coming on to the market all the time. If you do want to see what the range is, and potentially buy anything yourself, do ‘try before you buy’. You may find it helpful to visit one of the equipment exhibitions held around the country.

Kidz to Adultz exhibitions  are held five times a year in the UK specifically for children and young people (aged up to 25 years).

If an item cannot be funded by the health or local authority but your OT or other professional can verify your child would benefit from it, you may be able to get help with funding. See Funding for Equipment below.

Buying used disability equipment

If the NHS or Social Services cannot provide you with an item, this can be a good way to save money and get the products you need for daily living. Scope gives a summary of things to think about and where to look.


Selling used disability equipment

If you have disability equipment that you no longer need, you may be able to sell it. Scope gives a summary of suggestions for how to go about it.


Donating and recycling used disability equipment

There are several charities that accept donations of used disability equipment. Scope gives a number of suggestions.

If you are keen to try to pass on your equipment to other people affected by SMA, it might be worth checking if this is possible through one of the SMA online communities.

Equipz – Disabled Living’s services which relate to the provision of information and advice about equipment and services.

Naidex – Europe’s most established event for supporting independent living. It showcases wide-ranging solutions to improve mobility and accessibility, the latest innovations and tech, and explores the future of digital and physical accessibility. The event is for anyone who is living with a health condition or impairment, as well as anyone caring for or supplying to the disabled community. Their event features suppliers, seminars and panels, as well as interactive features.

Kidz to Adultz exhibitions – Organised by Disabled Living, these are five of the largest, free UK exhibitions dedicated to children and young adults aged up to 25 years with disabilities and additional needs, their parents, carers and professionals who work with them.