Transporting cerebral palsy patients: custom seating, communication devices, and transfers

What cerebral palsy changes on a ride

Cerebral palsy affects movement, balance, and posture, so it shows up in how a rider sits, moves, and talks more than in any medical need during the trip. CDC calls it the most common motor disability in childhood and describes a group of disorders caused by abnormal development of, or damage to, the developing brain. It does not get worse over time, although CDC notes the symptoms can change over a lifetime. It is not only a children’s condition: the Cerebral Palsy Foundation counts more than 700,000 adults with CP in the United States.

The type matters for the ride:

• Spastic CP, about 80 percent of cases by CDC’s count, means stiff muscles and exaggerated reflexes. It may affect mainly the legs, one side of the body, or all four limbs, the trunk, and the face. NINDS says people with the most severe form, spastic quadriplegia, are rarely able to walk and often have difficulty speaking.
• Dyskinetic CP brings uncontrolled movements, slow and writhing or fast and jerky. Muscle tone can swing from tight to loose within a single day, which the Cerebral Palsy Foundation notes too. NINDS says children with this type find it hard to sit straight, and some grimace or drool.
• Ataxic CP affects balance and coordination. These riders often walk, but unsteadily.

So two riders with the same diagnosis can need entirely different trips. For example, one walks with a slight limp and rides in a sedan. Another uses a power tilt chair with a head support, a tray, and a speech device. Book from the person, not the diagnosis.

The chair is part of the rider: secure it as a seat

A rider who uses a wheelchair may stay in it for the ride, and that is their right. Under 49 CFR 37.165(e), you may recommend a transfer to a vehicle seat but may not require one. UMTRI’s Ride Safe guidance says transferring is generally safest when it is feasible; RESNA’s position paper adds that inability to transfer, a high fall risk, or reliance on specialized seating should not keep anyone from traveling safely in their chair.

Custom seating changes how you secure the chair:

• WC19 chairs have four crash-tested securement points marked with a hook symbol and carry a WC19 label. Most chairs in use today still lack them, by RESNA’s account.
• Custom seating systems are often made by a different company than the base. RESNA’s WC20 standard tests a seating system on a stand-in frame, and UMTRI notes that a WC20 seat on a WC19 base makes a crashworthy wheelchair.
• Tilt-in-space chairs that are not WC19: attach all four straps either to the seat frame or to the base frame. UMTRI warns that mixing the two can let the straps go slack if the seat angle shifts in a crash.
• Securement points on any non-WC19 chair go on welded frame junctions or structural areas held by hardened bolts, as close to the seat as possible, with rear straps at 30 to 45 degrees. Never use armrests, footrests, wheels, or other parts that move or come off.
• Recline. UMTRI advises riding with the backrest 30 degrees or less from vertical. If the rider needs more recline, move the shoulder belt anchor back along the wall so the belt still touches the shoulder and chest. Ask the family what tilt the rider rides in.

Virginia’s fee-for-service handbook requires every wheelchair to be secured forward-facing with four straps plus a shoulder and lap belt. A chair you cannot secure perfectly is still a ride: 37.165(d) bars refusing a wheelchair over securement, and DOT’s appendix to Part 37 describes securement on vehicles outside its accessibility standards as a best-efforts duty. For the full sequence, see wheelchair securement standards; a printable version for the van is the securement checklist.

Belts, trays, head supports, and gear

Custom chairs carry extras that each need a decision before the van moves. UMTRI’s Ride Safe brochure covers them:

• Positioning belts are not seat belts. UMTRI says belts mounted on the wheelchair for posture cannot take crash loads, and they are rarely placed where a restraint needs to be. Add a crash-tested lap and shoulder belt every time, threading the lap belt between the armrest and backrest if needed so it stays low on the pelvis.
• Hard trays come off. Remove a hard tray and secure it elsewhere, or use a foam tray in transit. If it cannot come off, pad between the rider and the edge and make sure it is firmly attached.
• Head and neck support. If the rider needs support for the head and neck in transit, UMTRI recommends a soft, light collar not attached to the seating system, since stiff collars and head straps raise the odds of a neck injury in a crash. A properly positioned headrest may help in a rear impact.
• Loose equipment gets secured. Medical and other equipment must be fastened to the chair or the vehicle so it cannot fly in a crash. That includes a speech device on a tray mount, a feeding pump bag, and a backpack hung on the push handles.

Riders who need a feeding pump or other device during the trip have their own questions about what a van can carry, covered in our guide to patients with IVs, tubes, and pumps.

Tight muscles, sudden movements, and transfers

Spasticity and involuntary movement can make securement slow, and rushing does not help. NINDS describes spasticity as stiff or tight muscles and exaggerated reflexes, and dyskinetic movements as uncontrolled. A rider’s legs may stiffen and cross, and movements the rider does not intend can interrupt a strap check.

Habits that help:

1. Say what you will do before each touch. “I’m going to put the strap behind your left leg now.”
2. Move slowly and let the rider settle. Wait for a movement to pass before reaching in.
3. Move the strap, not the limb. Route a belt around a tight arm or leg rather than pulling the limb into place.
4. Ask the caregiver how they do it. Families and day program staff know which side to approach and what position the rider tolerates.
5. Keep transfers to what the rider does every day. A rider who stands and pivots at home may do it for the van too. A rider who is lifted at home stays in the chair.

Lifting is a separate question with its own limits; Virginia, for example, bars drivers from carrying a member up or down steps. Our guide to safe rider transfers covers when to stop and what equipment the job needs. Some riders with CP walk but are unsteady. Under 49 CFR 37.165(g), a rider who walks can still board on the lift or ramp rather than climb a high step.

Communication: speech, devices, and yes or no

Difficulty speaking is not difficulty understanding, so talk to the rider. NINDS notes that intelligence is rarely affected in dyskinetic CP and usually normal in spastic hemiplegia, while also listing intellectual disability among the conditions that can come with CP. Assume the rider follows what you say unless the family tells you otherwise.

Riders who have trouble speaking may use augmentative and alternative communication (AAC). ASHA, the speech-language association, says AAC is tailored to each person and ranges from no-tech methods such as pointing to pictures, spelling, or writing, to tablet apps and devices with a computer voice. A rider who cannot use their hands may work a device with an arm, a foot, the head, or the eyes. NINDS lists sign language and computers with voice synthesizers among the tools speech therapists teach.

On the ride:

• Learn the rider’s yes and no at booking. It may be a nod, a look up and down, a hand sign, or a button on the device. Write it on the trip notes.
• Ask questions that can be answered yes or no, one at a time, and wait for the answer.
• Keep the device with the rider, charged and secured so it does not become loose in a crash.
• Check hearing and vision needs too. NINDS and the Cerebral Palsy Foundation both list hearing and vision problems among the conditions that can come with CP.

Some riders drool, which NINDS links to overactive face and tongue muscles in dyskinetic CP. Ask the family to send a cloth or bib, and do not comment on it.

Seizures, swallowing, and when to call 911

Seizures are one of the conditions that can come with CP, and NINDS says people with spastic quadriplegia often have frequent seizures that do not respond well to medication. Ask at booking whether the rider has seizures and what the family wants done. If one happens in the van, CDC’s seizure first aid applies:

1. Pull over somewhere safe. Virginia’s handbook has drivers pull off to a safe location and call 911 in any emergency during transport.
2. Stay with the rider, keep them calm, and clear away anything they could hit.
3. Time the seizure.
4. Do not hold the rider down or stop their movements, and put nothing in their mouth.
5. Call 911 if the seizure lasts longer than 5 minutes, a second one follows soon after, the rider has trouble breathing or waking up, or the rider is hurt.

Swallowing is another risk. NINDS reports higher rates of swallowing difficulty in adults with CP, which is one more reason to keep food and drink out of the van. Virginia’s member handbook, for example, bars eating and drinking on board. A rider who is choking needs 911.

Fatigue, pain, and how long the ride takes

Long rides are hard on riders with CP. NINDS notes that people with CP may use up to five times as much energy as others to walk and move, and that adults often have pain in the hips, knees, ankles, and back. It also says most people with CP show some premature aging by their 40s.

Keep the trip short and predictable. Route these riders directly when you can, avoid long waits in a secured chair at the curb, and do not add other riders’ stops beyond your program’s limit. Virginia, for example, caps travel at the direct travel time plus 45 minutes. Ask the clinic how long sessions run so a timed return fits, or book a will-call when it cannot say. Our guide to how long medical appointments take lists common session lengths.

Escorts, the same driver, and a steady schedule

The person who knows the rider best is a good escort to have along. Programs set their own escort rules for children. Virginia, for one, requires an escort aged 18 or older for riders 12 and under, unless the escort is a parent. For adults, an escort is up to the rider and the payer, and under 49 CFR 37.5(e) a provider may not require one.

Consistency pays off with these riders because so much of the job is learned. A driver who has secured a rider’s tilt chair before knows its securement points, its recline, and how the rider signals yes. Virginia’s fee-for-service provider handbook from MTM Health expects providers to keep one driver on a member’s recurring trips whenever operations allow, names members with medical, mobility, or cognitive needs as the ones it helps most, and wants a record each time a different driver covers. NINDS lists physical, occupational, and speech therapy among the main treatments for CP, and Virginia lets health care providers set up standing orders of up to six months for physical, occupational, and rehabilitation therapy.

Running these trips in HealthRide

Book a rider’s weekly therapy once as a recurring trip, and HealthRide keeps it going on the same days and times. If a wheelchair rider is about to be assigned to a van without a lift, HealthRide warns you first, and an escort booked on the trip counts toward the seats.