Wheeled mobility refers to either a wheelchair or a powered mobility scooter, which may be manual (pushed by user or carer) or powered (controlled by user or carer) and is used by a young person with weakness to enhance their health, safety, wellbeing and participation in everyday life.
This page will cover when and why wheeled mobility is generally introduced in DMD, the different types that are commonly used and how to go about obtaining wheeled mobility for your child with DMD.
Early childhood:
Young people with DMD walk independently but will get tired more quickly and fall more often than their classmates.
Wheeled mobility is used occasionally for rest and to safely access busy places that require lots of walking such as school excursions, shopping centres, day-outings etc.
Mid-childhood:
With increased weakness, walking becomes both more difficult and tiring. Falling (or worry about falling) may be more obvious and young people with DMD may opt-out of daily activities to keep themselves safe.
Wheeled mobility may be used for managing tiredness, keeping up with peers throughout the school day and during community activities with family or friends. For example, to move between classrooms, go out to the playground or go to the supermarket.
Early adolescence:
Many young people with DMD are no longer walking very much and spend most of their time sitting.
Wheeled mobility provides independence and can be used to ensure comfort and manage energy levels throughout the day.
In general:
Wheeled mobility enables young people with DMD to keep up with their friends, stay safe, manage tiredness, be independent and fully participate in school, community and family life ensuring social, physical and emotional well-being despite increasing muscle weakness.
Participation
Support your child to be involved in typical childhood activities without worrying about being too slow, getting tired or falling over.
For example: allowing your child to join in all activities their peers may do such as physical education at school, outdoor play, excursions, full-day school attendance, etc.
Mobility
Give your child the confidence to move easily from place to place.
For example: safely keeping up with peers when moving between classes, going out into the school yard or supermarket shopping.
Access
Freedom to go anywhere your child needs to throughout their day. This may include:
Energy conservation
Using wheeled mobility helps to conserve your child’s energy so they can enjoy the best aspects of their childhood.
For example: using wheels to move between classes or out to the playground saves energy for playing and learning.
Ability
A customised seat can support a young person’s body to help them get the most out of the muscle strength they have.
For example: support around the back and chest can help arm muscles to achieve more during daily activities such as dressing or writing.
Growth
Provide appropriate support while sitting to encourage good posture and healthy growth.
For example: to prevent muscle and joint tightness and keep a straight spine.
Comfort
For those who mostly sit, wheelchair features allow your child to stay comfortable throughout the whole day.
For example: using a wheelchair to change body-position, such as tilting the chair back or lifting the leg rests.
Adjustable
Choose equipment that can be modified and grow with your child.
For example: with time a young person’s body shape, size and level of weakness will change. Where possible, wheeled mobility devices should change too.
Manual wheelchair
A manual wheelchair may be provided early for occasional use. It is usually pushed by a parent or carer and may fold for easy transport. It is more suitable than a stroller or pusher for school age children. Manual wheelchairs allow your child to conserve their energy for playing and learning and access places and environments that may be more difficult to get around if walking.
Example: crossing the playground, excursions, visiting the hospital or trips to the city, etc.
Powered mobility scooter
Often provided when a child is still able to walk well but physical tiredness during the day is limiting their safety and participation. A scooter allows your child to get from place to place, saving energy. Your child must be able get on and off the scooter on their own.
As it is a powered form of mobility it is important that your child can be trained to use a scooter safely in the community, including crossing roads and around people/crowds.
Most powered mobility scooters can be dismantled and put into the back of a larger car, for example a station wagon or SUV.
Example: can be used for heading out to the school yard at recess, excursions, getting to/from school, visiting the hospital, etc.
Powered wheelchair
Used when walking becomes more difficult and a child with DMD is spending more time sitting throughout the day.
A power wheelchair has a comfortable and supportive seat to provide postural support, conserve energy and allow your child to independently participate in everyday life alongside their peers.
Standing power wheelchairs are another power wheelchair option enabling sitting or standing in the wheelchair itself. There are some benefits to using a standing power chair however your child needs to be assessed to make sure it is appropriate for them. Talk to your local physiotherapist or occupational therapist about this.
Power wheelchairs are generally large, heavy and bulky. Your family will require some form of modified vehicle/van or access to maxi-taxis to transport your child in their chair.
What about a stroller?
Younger children up to school age may use a stroller or pusher to travel longer distances. These are lighter in weight and are sometimes preferred by families.
It is worth noting though, that they do not offer postural support or independence to children with DMD. Strollers are not recommended for school age children.
Discuss this further with your local occupational therapist or physiotherapist if you have questions.
Discussions around wheeled mobility can be both challenging and confronting but your therapy team can support you in this.
Your child is unlikely to need wheeled mobility straight away upon diagnosis but by considering it early you will better understand how to start the process when you child needs it.
As a family, you can start to familiarise yourself and become comfortable with how wheeled mobility best fits into your family unit and your child’s lifestyle. This will help you to plan effectively when the time comes to introduce wheeled mobility.
Be sure to reach out to your occupational therapist or physiotherapist regularly whilst considering this.
Some useful prompts to consider when thinking about whether your child would benefit from wheeled mobility include:
Tiredness or fatigue:
Observing how your child’s life is being impacted by tiredness or fatigue may indicate that it is time to consider introducing wheeled mobility.
Tiredness can look different for each child and so it can be useful to begin to understand how it looks for your child. For example, when tired they may: have difficulty focusing, behavioural challenges, fall, disengage, opt out of activities, ask to be picked up early from school etc.
Falls
If your child is falling more often, it may be due to increasing weakness. More frequent falls may make them feel unsafe and opt-out of typical activities, especially if they are having trouble keeping up. This could be another indicator that wheeled mobility would be beneficial to conserve energy, reduce tiredness and prevent falls.
Participation and access
If your child is starting to miss out or opt-out of typical childhood activities for their age-group it may be time to consider with your allied health therapists why this is, and whether wheeled mobility may be helpful.
Mobility
If you and your healthcare team notice that your child finds it more difficult to walk longer distances, it might be time to explore how wheeled mobility can help.
Family life
This about how your child is managing to keep up with all aspects of family, community and social life. For example, is there anything you avoid doing together as a family or that your child has to opt-out of because of limited mobility? If so, it may be time to consider wheeled mobility.
Suggestion from healthcare team
Your doctor or therapist may suggest wheeled mobility if their assessment of your child shows walking is becoming more difficult.
Your community occupational therapist or physiotherapist will work with you and your child to decide which wheeled mobility product is right for you.
If your community therapy team require any guidance with this, encourage them to contact your specialist healthcare team (neuromuscular outpatient clinic).
In Australia the National Disability Insurance Scheme (NDIS) provides funding for wheeled mobility. Your NDIS-funded community allied health therapists (physiotherapy and/or occupational therapy) are responsible for prescribing the equipment along with writing the application to NDIS and can also support the ongoing maintenance of the equipment itself.
If you do not have access to the NDIS or do not have enough funds in your package to begin working with an allied health therapist toward wheeled mobility, please contact your healthcare team or speak to your NDIS planner for more information.
Once you have an NDIS plan, the usual process for acquiring wheeled mobility is:
1. Therapy team
Make an appointment with an occupational therapist (OT) or a physiotherapist in your area to discuss equipment prescription.
2. Set goals
Meet with your therapist/s to set goals for wheeled mobility use. These may include your child’s interests, lifestyle, environment, priorities, challenges and physical needs.
3. Trial equipment
Spend time trialing different equipment to ensure they are comfortable, functional and achieve your goals.
4. Confirm funding
Your therapist will write a script detailing your equipment and submit it to your funding body for approval (in Australia, this is usually NDIS).
5. Training program
Once the equipment has been received it is important that funds are also allocated for physio or occupational therapy to build your child’s skills and confidence in using the new equipment.
6. Review ongoing
Stay in touch with a therapist to review and modify the equipment as your child’s needs and goals change.
If your child is not eligible for NDIS, talk with your therapists (physio or OT) about alternative funding arrangements.
If your child has a regular community physiotherapist or OT, start by talking to them about wheeled mobility. If they can’t help you, they may be able to help you to find someone suitable to assist with equipment prescription. If the physiotherapist or occupational therapist helping you doesn’t have a good understanding of DMD and the progressive nature of this disease, you can seek specialist information from your neuromuscular healthcare team. Most importantly, you and your child must feel comfortable with the physiotherapist or occupational therapist you engage with to prescribe the equipment.
Reach out to your community allied health therapists and encourage them to work with your primary neuromuscular healthcare team to apply for a review of this decision or to plan your next step.
Work with your community allied health team to trouble shoot issues you are experiencing with your current wheeled mobility. They will help you decide your next move.
If you do not have a community team, reach out to your neuromuscular healthcare team at the hospital.
