Avenue to independence

Continuing the theme of ‘Out and about on a wheelchair’ featured in Viewpoint.

Shanta Everington summarises the current legal position in the UK. Denise Ganley, writing from New Zealand, shares her thoughts on this from an international perspective.

This debate is then continued by colleagues from Through the Looking Glass in the USA, who look in more detail at the practical and legal aspects of carrying children when using a wheelchair.

Legal issues

Parents have a duty of care to ensure that a baby or child is carried safely. It is important to seek professional advice when planning solutions.

In the UK, all wheelchairs are classed as medical devices and their use is regulated by the Medicines and Healthcare Products Regulatory Agency (MHRA).

There is no law that specifically prevents the user of a manual wheelchair from carrying a baby or child on the wheelchair, provided this does not endanger the occupants or the public. However, if you don’t own the wheelchair outright, it is important to get permission first.

Using a powered wheelchair

The law on powered wheelchairs is less clear. Under the Road Traffic Act 1988 they are permitted on public highways (roads and footpaths), but only if used solely by a disabled person. This would appear to prohibit a disabled adult from carrying a child on the wheelchair, but this has never been tested in the courts.

DPPi is in the process of clarifying the legal position for parents who use powered wheelchairs and scooters. The Department for Transport is currently reviewing the legislation. DPPi responded to the Department’s consultation document earlier this year, raising our concerns about the needs of disabled parents who use wheelchairs. We are awaiting an update.

“If such a rule existed I would be unable to go out independently with my children and this would not be acceptable for me.”

Denise Ganley, from Auckland, New Zealand shares her thoughts from an international perspective.

"I was interested to read the item about carrying children on wheelchairs. I’ve not seen anything about this in New Zealand and, to be honest, if they had a rule prohibiting this then parenting would become extremely difficult for me.

I have two daughters, Olivia, aged two and Georgia, six, and they have grown up sitting on my knee while I am in my power wheelchair. Usually Olivia is on my knee and often Georgia is standing on the footplates. Occasionally, if we are somewhere busy, I have the seatbelt around myself and Olivia to prevent her getting off. However, I don’t usually use this. I believe I am a cautious wheelchair driver and I think this is quite safe. If such a rule existed I would be unable to go out independently with my children and this would not be acceptable for me."

Shanta Everington, DPPi Information Officer

"Transporting a child is so vital to all baby care that parents, disabled or not, will do whatever it takes to move their child safely."

Ella Callow is Family Law Advisor and Christi Tuleja is Parenting Equipment Specialist at Through the Looking Glass, based at the National Resource Center for Parents With Disabilities in California, USA.

Anyone who has cared for a young child knows that the ability to carry and move a child from one location to another is one of the central skills required of a parent in performing baby care activities and conducting household and family routines. Transporting a child is so vital to all baby care that parents, disabled or not, will do whatever it takes to move their child safely, even placing their bodies at risk of injury or strain.

Adaptive equipment

Adaptive baby care equipment can lessen the strain on the bodies of parents with disabilities, ease the task and provide an avenue to independence. Moreover, by enabling a wheelchair user to carry their child safely, adaptations can help parents retain custody of their minor children in the face of legal challenges from the state or able-bodied partners. This is because, without adaptations, some wheelchair-using parents would not be able to transport their children independently to medical, educational, religious or enrichment activities, particularly if they don’t have the means to pay for private child care assistance and if they don’t have family to help them. Under the dependency and family law legislation in every American state, this could give able-bodied partners, or the state, strong grounds to take custody of the minors in question. (The legality of transporting children using adaptations in wheelchairs is discussed later in this article.)

Over the years, parents (and professionals) have developed various ways to carry children, while simultaneously driving or pushing their wheelchairs. A number of parents who use wheelchairs have used baby front carriers and cloth slings found on the market. However, these products don’t work for all parents due to snaps, zippers, buckles and multiple straps which create obstacles for getting the child in and out and are impractical for frequent lifting, placing and carrying between baby care activities. Furthermore, when using these products while sitting, as in the case of the wheelchair user, the weight of the child can place a strain on the parent’s shoulders and back.

Occupational therapists and parents at Through the Looking Glass have designed, adapted and tested carriers. The following are descriptions of some adapted equipment specifically designed for the parent who uses a wheelchair.

Obviously babies need to be supported and carried the most during infancy and the non-mobile months. A lap can be a cosy and convenient carrying surface. Sometimes the weight or seating positions of wheelchair-users causes their lap to slope downwards away from the body or creates spaces through which the baby could slip. Pillows and foam cushions can create a level surface as well as cradle the child, allowing the hands to be free.

The Bobby pillow (also called a nursing pillow), adapted by adding a Velcro waist strap, creates a trough near the parent’s body where the baby is well supported while being moved from one place to another.

A foam lap cushion, with the underside shaped snugly around the thighs, the top shaped to slope gently towards the parent’s body, and with a trough for the child, can be a multi-use surface. Covered with a pillowcase and provided with a Velcro waist strap, this comfortable cushion can easily be placed on and off, or if necessary worn throughout the day. Foam is easy to shape using an electric carving knife and spray glue designed specifically for foam.

Some parents prefer the infant to be off their lap while carrying the child. Lightweight, yet strong plastic tubing used in home construction is an exceptional material for building an infant carrier that can attach to the arms of the wheelchair. A sling seat from an infant bathing tub is used to support the baby.

As the child grows and wants to sit upright and look out from the parent’s lap, a carrier can be created from a fanny pack (bag worn around the waist). This provides a level surface for the child to sit on and has an existing waist strap for the parent that can be adapted if necessary. Use fabric and straps made from webbing to provide chest support for the child. This carrier is lightweight and easy to use in the home or community. It also allows for a few baby care items to be carried in the pack.

Once a child can sit unassisted, some parents can simply use a parent-child seat belt. The child’s seat belt is attached to the front of the parent’s seat belt. Having the child wear his or her own seat belt, as opposed to both using the parent’s, prevents the parent’s weight from moving into the child during sudden stops.

A child’s safety car seat can be attached to the front of a power wheelchair. The car seat can rotate around making reaching and care easier. The carrier is a multi-use device for feeding and playing and is useful within the home and community.

For a toddler, a child’s bicycle seat can be attached to the back of a power wheelchair or four-wheeled scooter. Children are encouraged to wear a bicycle helmet. This fun way to travel is excellent for long rides such as shopping or recreational activities.

It is important to note that children naturally adapt to their parent’s care style and see the wheelchair as associated with and almost part of their parent. Experienced parents with disabilities encourage collaboration with their children. Promoting participation and co-operation on the part of the child creates an effective team that can overcome barriers. Because of these natural (child adapting to parent) and deliberate (parent encouraging child’s participation) occurrences, most young children, and even crawling babies, require no adaptations while being carried on their parents’ laps. Rather, the child will lean back against the parent’s chest, hold onto the parent or wheelchair, maintain balance, and reduce his or her movements while riding. However, for the parent with more significant disabilities or who prefers the child to be off his or her lap, baby care adaptations are essential.

Is it legal?

Adaptations that enable wheelchair users to transport children are clearly vital to the well-being of the parent and child, even to the point of facilitating a parent’s ability to keep their child with them in the face of custody challenges. But is carrying a child in a wheelchair legal?

Thankfully, there is currently no legislation in the United States defining a wheelchair as a form of transportation intended solely for one passenger. Nor is there any case law in either the federal or state courts stating that carrying an infant or young child in a wheelchair is child endangerment. Of the major wheelchair manufacturers, no information on their internet sites indicates that infants or young children should not be carried as passengers.

While there is no case law directly discussing this issue, one case mentions the issue in passing. The case is Dillery v Sandusky, 398 F.3d 562 (2005). In Dillery, a wheelchair user is appealing against portions of a decision rendered in her lawsuit against the city of Sandusky for failing to provide proper sidewalk cuts and ramps for wheelchair users. The case is part of a series begun when a wheelchair user was forced by the lack of proper sidewalks to drive her wheelchair in the road with her daughter on her lap. She was subsequently charged for being a pedestrian in the roadway and for child endangerment (Dillery v Sandusky, 398 F.3d at 567).

The defendant was acquitted of child endangerment after a full jury trial. According to Dr Megan Kirshbaum, who served as an expert witness for the defence during that trial, prosecutors asserted that it was not safe to carry a child in a wheelchair. However, she does not recall prosecutors providing any evidence from wheelchair manufacturers to support this assertion or citing any state laws prohibiting the behaviour.

It is worth noting that the private sector and the legislature are both silent on this issue.

The American private sector is highly focused on pre-empting lawsuits. If wheelchair manufacturers are not warning against carrying children in chairs, it would seem to indicate that they are not privy to severe injuries occurring. Moreover, legislation to protect children is very popular. If parents transporting infants or young children on wheelchairs were causing significant numbers of injuries, it seems likely that at least one jurisdiction would have chosen to prohibit the behaviour legislatively.

This dovetails with the institutional experience of Through the Looking Glass. In 23 years of service to parents who use wheelchairs, the organisation has never been informed of an injury to a child being transported by a parent in a wheelchair.

Further resources

For more carrier equipment ideas or further information about those mentioned refer to Through the Looking Glass’s Adaptive baby care equipment: guidelines, prototypes and resources.

For information on the new Baby care assessment for parents with physical limitations or disabilities: an occupational therapy evaluation, or if you would like a baby care equipment or family law consultation, contact:

National Resource Center for Parents With Disabilities
Through the Looking Glass
2198 6th St, Suite 100
Berkeley, CA 94710
USA

Telephone: +1 510 848 1112
Within the US: +1 800 644 2666

Website: www.lookingglass.org

Ella Callow and Christi Tuleja

Next: Parents experience: Love lessons