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’ll take into account your child’s muscle strength and any breathing difficulties. If your child isn’t 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.
If your child is unable to sit comfortably and safely due to their muscle weakness and breathing difficulties, they may still be able to tolerate and enjoy being in a semi-seated position, allowing them to see and join in more with what’s going on around them. Your OT / physio may suggest an individually moulded seat as a way of doing this. There are a number of options for supportive seating and your OT / physio will recommend what’s best for your child.
One example of an individually moulded seat is a P Pod. You can find out more here: www.specialisedorthoticservices.co.uk
If your child can sit, your OT or physio will look for a seating option that'll make it easier for your child to play with toys, eat independently and join in at home and at nursery / school. For younger children, some seats fit on a base for use indoors, and then transfer to a buggy base for use outdoors. Having just the one seat can be a help in terms of storage space.
Your OT should be able to supply some seating free via the NHS or the Local Authority. Usually they can only supply what's 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 doesn’t always fund specialist seating such as the P Pod, but check with your OT.
You may want to apply for help to buy additional or specialist seating. Support Services at SMA UK can suggest charities that may provide a grant. Most charities won’t fund retrospectively, so it’s important not to place your order or pay any deposit until all funding has been secured or pledged.
Most charities will need:
- a letter from your OT / physio to say that the seating you've chosen is suitable, safe and meets your child’s needs and that the NHS is unable to provide funding
- your quote from the supplier detailing costs, including any extra accessories and delivery. Seating may be subject to VAT if it hasn't been ‘designed solely for disabled people’ (the general rule for whether an item is VAT exempt). Ask the supplier to check with the manufacturer for you.
You can find related information in the Living With SMA section:
Funding For Equipment
Page last updated: July 2019