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The Cookstown family faced significant difficulties when trying to take their daughter Lila out in the car, which heavily affected their daily life and their ability to attend essential hospital appointments. In Northern Ireland, children are not eligible for the higher rate mobility component of Disability Living Allowance (DLA)—a prerequisite for accessing the Motability Scheme—until they turn three years old. This rule is based on a child’s capability to walk, which posed a problem in Lila’s case.
Lila was unable to roll, sit, or stand and was completely dependent for all care according to a paediatric physiotherapist. Although she was provided with a specialised buggy, the family required a wheelchair-accessible vehicle to transport both Lila and her buggy safely. Her mother expressed frustration that access to such transportation was “denied” purely because of Lila’s age rather than her actual medical needs. Lila’s father, Robert Weir, described the situation as “terrible,” with him having to sit in the backseat of the car holding Lila’s head up just to keep her breathing during journeys. Thankfully, a charity supporting disabled children stepped in and supplied the family with a wheelchair-accessible vehicle shortly before Lila’s second birthday, something Robert described as a “lifeline.” Her mother added, “She was able to be safe and she got the life that she deserved eventually because she was fit to get out of the house.”
As Lila’s third birthday, which fell on 1 August, approached, the family hurried to complete paperwork to ensure she could apply for the mobility DLA before she turned three. Hayley, Lila’s mother, expressed her feelings of injustice, stating she believed her daughter was being denied “basic human rights that other kids are entitled to because she was born different.” She appealed to government departments to collaborate with healthcare professionals, to place greater emphasis on diagnosis, clinical need, and expert medical opinions rather than strictly on age or date of birth.
Another challenge for Lila’s parents was securing continence products for their daughter. Hayley explained Lila was not eligible for these because of her age, despite using the largest nappies available. She highlighted that Lila weighed over 21 kilograms before she passed away and worried about what would happen when those nappies no longer fit. The family sought help from several healthcare professionals who attempted to assist but were unable to arrange an assessment as Lila did not meet the age criteria—adding further stress in an already difficult time. Guidance from Bladder and Bowel UK states that continence products are only provided to children of at least five years old who have undergone a full assessment and been supported by a toilet training programme for at least six months. However, toilet training was not possible for Lila due to her condition. Linda Dillon, a member of Stormont’s health committee, voiced that families dealing with complex and life-limiting conditions should not have to expend so much effort fighting for necessary services. She suggested that age restrictions could be flexibly adjusted by the health and communities ministers to ease these burdens, calling it “a massive help to families.
Read the full article from The BBC here: Read More
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