Children (0-12 years) Equipment
Children (0-12 years) Equipment
Page last updated: February 2024
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.
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.
Walking Equipment
The health authority is responsible for providing equipment for medical needs, including wheelchairs. How WS are organised and what they will fund varies from region to region; many have a waiting list.
Whether or not they are able to walk, some children may use a lightweight manual wheelchair. Some may need to use one most of the time; others may only need one some of the time. For example, it might make a difference to their enjoyment of a trip to where the flooring is smooth (like an indoor shopping centre) – that they may otherwise find too tiring to manage. Some children may need one as a ‘backup’ to their powerchair.
Your child’s OT and / or physio will be able to advise if a manual chair is a suitable option for your child and may well involve Wheelchair Services (WS) in any assessment of your child’s posture and position. You will be advised on the most appropriate make and model and when, where and how it could be used.
Living Made Easy / Manual Wheelchairs may be helpful for any discussions with your OT / physio (not all items are suitable for children).
If your child’s OT and WS agree your child needs a manual wheelchair as a key means of indoor mobility, the NHS should provide your child with an appropriate one. If you prefer an option that they cannot provide but they agree it is still suitable for your child, they may be able to part fund it. If the manual wheelchair is to be a ‘backup’ only, it is unlikely the NHS will fund it.
If you need help to raise funds, 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 funding is ready or pledged. For more information, see Funding For Equipment below.
- Whizz-Kidz – provides very small manual and powered wheelchairs allowing toddlers to explore their surroundings independently. They do this on a loan basis and as quickly as possible from initial contact so children don’t miss out on opportunities in this crucial stage of their development. They also fund a range of powered and manual wheelchairs for children under 18 years of age, if wheelchair services can not provide the mobility equipment your child needs. They also provide information, advice, activity programmes and wheelchair skills training programmes, as well as this guide: Caring For Your Wheelchair: Wheelchairs and Equipment.
- Go Kids Go – training and expert advice for wheelchair using children.
Due to their muscle weakness, many children with SMA need powered mobility equipment to get around at home, nursery / school, and for going out.
Powerchairs are complex pieces of machinery that will need maintenance and to be insured. What you choose has knock on effects in terms of what vehicle you may need and potential adaptations to your home. You will need to work closely with your OT to trial and select the right one for your child and see what help you can get with funding.
You can find suggestions and links on all these topics through the link below:
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:
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.
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.