The parents of a severely disabled two-year-old child, who died in May, stated that they spent their daughter's entire life advocating for support for her complex condition. Lila Dripps-Weir's parents described facing significant hurdles in accessing essential services, including a wheelchair-accessible vehicle, which they argue were denied based on her age rather than her critical medical requirements.
One of the primary challenges the family encountered was transporting Lila, a difficulty that profoundly impacted their family life and their ability to attend crucial hospital appointments. In Northern Ireland, a child cannot qualify for the higher rate mobility component of Disability Living Allowance (DLA), a prerequisite for the Motability Scheme, until they reach three years of age. This eligibility criterion is based on a child's ability to walk, a benchmark Lila, who could not roll, sit, or stand and was entirely dependent for all care according to a pediatric physiotherapist, could not meet.
Despite receiving a specialized buggy, the family required a wheelchair-accessible vehicle to transport both Lila and the buggy. Her mother recounted that this was "denied" to Lila "due to her age, not clinical need." Lila's father, Robert Weir, described the lack of a safe vehicle as "terrible," recalling a situation where he had to hold his daughter's head in the back of their car to ensure she could breathe.
A charity eventually provided the family with a wheelchair-accessible vehicle shortly before Lila's second birthday, which her father termed a "lifeline." His wife stated that the vehicle allowed Lila to be safe and to experience life outside their home, something she deserved.
Lila's third birthday would have been on August 1. In the weeks leading up to what would have been her third birthday, her parents were occupied with filling out forms to ensure she met the deadline for applying for mobility DLA.
Her mother expressed that she felt her daughter was not "entitled to basic human rights that other kids are entitled to because she was born different." She advocated for government departments to collaborate with healthcare professionals, considering diagnoses, clinical needs, and expert medical opinions over age-based restrictions and birthdays.