Safe travel solution needed urgently for Haru
Haru is 3 years of age. He has a diagnosis of Leukoencephalopathy with Brain Stem and Spinal Cord Involvement and Lactate Elevation (LBSL). This rare genetic condition impacts all areas of his development.
Haru has significant postural issues with minimal voluntary muscle control, spasticity, and generalised muscle weakness. Haru moans and grimaces when he is uncomfortable or distressed but has no formal means of communicating or expressing his wants and needs.
Haru is fed by nasogastric tube (this has since been replaced by a PEG for his nutritional intake). With a history of seizures, Haru is fully dependent on his mother and support workers for all aspects of his care. Ensuring comfort and quality of life is the primary focus of all intervention.
Haru lives in the ACT.
Step 1: Assess
Haru lives with his mother, Akari. Akari was born overseas and moved to Australia when she married (she is now divorced). Akari’s English is improving but interpreters are frequently called upon, especially when discussing technical or complex issues. Akari is Haru’s sole carer; his father is not involved in his life.
Akari has a car (2015 Toyota Camry) but as Haru is unable to be safely transported in an Australian standard car seat, she relies on travelling with Haru on her lap in an ambulance to hospital appointments. Akari holds her son to support his head and neck to ensure his airways remain unobstructed, as Haru experiences frequent seizures.
Akari is unable to drive her son to medical and other appointments because she needs to support the positioning of his head, neck, and body. Haru is gaining weight from nasogastric feeds and is becoming heavier and more awkward for Akari to hold.
Haru receives in-home support from visiting nurses due to his palliative status and associated high level of medical care needs. However, he also has regular appointments with a range of specialists based in Canberra, requiring him to travel.
Akari is extremely isolated and mostly confined to her home where she cares for Haru constantly. Access to the community is almost non-existent unless visitors come to their home, or they travel to hospital in an ambulance.
Haru’s OT, Lynda, assesses the need for a suitable vehicle restraint option as very urgent.
Step 2: Plan
Lynda identifies key selection criteria for a suitable vehicle restraint option for Haru. This includes postural support, recline, and a swivel base to help Akiri to transfer Haru in and out of their car.
Selection of restraints
Lynda reviews the Australian standard car seats and finds that there is no compliant child restraint with a swivel base. Lynda reviews the special purpose car seats and finds two options that may be suitable for Haru and Akiri's needs. Both restraints require ISOFIX low anchorages for the swivel base, which are available in Akiri's car.
Trial of restraint
Lynda arranges to trial both products at Haru's home. Lynda and Akiri find that both products provide adequate postural support for Haru's needs, however one product has greater recline capability, which Haru may need from time to time.
Lynda completes a Task Analysis of Akiri transferring and positioning Haru in and out of the car with both car seats and identifies that Akiri needs training in manual handling.
Lynda and Akiri decide on the product with the extra recline capability.
Step 3: Implement
Lynda completes the Advice to Parent form and nominates a three month review. She also completes the NDIS required documentation, highlighting the urgency of need due to Haru's palliative care needs.
The funding approval is received within one month and Lynda arranges with the supplier to meet at Haru's house to install the restraint.
The supplier installs the restraint, highlighting the importance of using the vehicle seatbelt around Haru and the restraint. He also shows Akiri how the recline function and swivel base work.
Lynda educates Akiri on how to safely transfer Haru in and out of the vehicle, and also checks that Akiri is confident in using the recline and swivel base features, as demonstrated to her by the supplier.
Lynda completes the referral letter for Akiri to obtain a medical certificate from Haru's doctor. This is required to legally use the special purpose child restraint in the ACT. She also updates the Advice to Parent form to reflect a review date of three months from installation of the restraint.
Step 4: Review
Lynda meets with Akiri and Haru on the scheduled review date. Akiri reports that she has been able to take Haru to his medical appointments in their car, and has even taken Haru out shopping. Akiri reports that the swivel base is working well for now, however if Haru continues to grow and increase in weight this may become more difficult.
Lynda updates the Advice to Parent form for a review in three months time.
A real issue for many families is that they cannot afford a vehicle suitable to be modified for wheelchair use, and continue to have to lift their growing children in and out of vehicles.