Buying specialist wheelchair or mobility equipment can be a big challenge. Existing services are unlikely to cover the full amount. To help bridge this funding gap and boost independence, the Motability Foundation has awarded a three-year grant to the charity Spinal Muscular Atrophy (UK), which supports those with all three types of Spinal Muscular Atrophy (SMA). It will help disabled people buy what they need, such as mobility equipment in the home and power wheelchairs with risers.
What is Spinal Muscular Atrophy?
SMA is a neuromuscular condition, which causes progressive muscle wasting. Although SMA is rare, an estimated 1 in 40 people carry the gene – that's around 1.69 million people in the UK. Each year, around 70 babies are affected by SMA in the UK, and around 1,500 people in the UK are currently living with SMA.
From birth, the condition may affect crawling and walking ability; arm, hand, head and neck movement; breathing and swallowing. How people are affected, and in what way, varies greatly but specialist wheelchairs and mobility aids are essential for enhanced mobility.
The initiative
SMA UK will be using the grant to support their SMArt Moves project. The funding will be used over a three–year period to assist 180 disabled people living with SMA to:
- Purchase power wheelchairs
- Purchase manual wheelchairs
- Purchase several other pieces of equipment to improve their mobility and independence
The SMArt Moves initiative is split into three grant–giving schemes:
SMArt Moves 1.1
Offering grants to fully fund powered wheelchairs and manual wheelchairs that cost can anything up to a maximum of £5,000.
SMArt Moves 1.2
Offering grants of £5,000 towards powered wheelchairs and manual wheelchairs that cost over £5,000 (in exceptional circumstances funding may be awarded over this amount).
SMArt Moves 2
Offering grants of up to £2,500 for other mobility equipment, including risers and batteries.
Michele Phillips, SMA UK Community Support Officer, explains: "Since 2006 we have a small support service in place that helps the community on all sorts of issues. Part of that work was around helping people access grants from other bodies. The Motability Foundation grant has enabled us to employ Ally Allen, who set up the SMArt Moves scheme to help us fund that equipment and handle the applications."
"The Motability Foundation grant is great because having a powered chair or a manual chair is one of the most important things for our community," says Michele.
Transforming lives
Ally Allen says: "One item which transforms the lives of many with SMA is the purchase of a wheelchair riser and that's something wheelchair services won't do.
"They transform people's lives as they are no longer being looked down on and can be at eye level."
Ally adds: "I'm an SMA mummy - my son Bobby has SMA type three and he's in a power chair. We wanted the option for him to have a rising function on his power chair because he was going to high school, and all the tables are higher in the science blocks, so he wouldn't get to them in his standard chair. The rising function is key. He's 13 years old and all his friends are tall, so he needs to be able to be on eye level with them."
Giles Lomax, CEO at SMA UK says: "We know how expensive specialist pieces of equipment are and our SMArt Moves initiative allows the SMA community to get access to provision a lot quicker.
"The grant from the Motability Foundation is having an enormous positive impact on the SMA community and we are delighted successful applicants have already taken ownership of their new piece of equipment."
How to apply
All applicants need an assessment and supporting letter from their occupational therapist (OT) or physiotherapist. They will need to see applicants in a chair to know it meets their needs and postural support. Preferably the applicant will have had a wheelchair services assessment.
If the chair recommended by wheelchair services isn't suitable, they can choose a wheelchair voucher and put it towards the SMA UK grant.
Please note: the SMA grants do not provide the full cost of the equipment. Applicants will need to raise additional funding from other sources.
The grant supplements other funding, such as vouchers from Wheelchair Services or grants from other charities. SMA UK can help support applications to third-party funders.
All grants will be paid directly to the supplier, not the beneficiary, and the grants will only be awarded for a primary wheelchair.
You can find out more by visiting the Spinal Muscular Atrophy (UK) website.
JEMMA’S STORY
"Thanks to the SMArt Moves Grant, I was able to purchase my new wheelchair," says Jemma Collins. "It will enable me to be as independent as possible and continue my job as a full-time maths teacher to the best of my ability."
KAROL’S STORY
Mum Magda applied to SMArt Moves 1.1 for support with buying a Panthera Micro wheelchair for her son, Karol. "I am so grateful that Karol has his first own wheelchair," she says. "He loves it and his arms and legs are getting stronger!"
