A mum-of-one is shedding light on the realities of raising a disabled child, including the extra £4,000 price tag pushing her family constantly into debt
Kirsty Northam is opening up about the harsh realities of raising a disabled child, particularly when it comes to finances, as the cost of accommodations and therapies for her six-year-old daughter adds an extra £4,800 to the family’s bills each year. The Berkshire mum, along with Purpl founder Georgina Coleman, is advocating for better support for SEND families.
Six-year-old Harper has been diagnosed with autism (Pathological Demand Avoidance profile), Hyperlexia, Sensory Processing Difficulties, and Restrictive Eating Patterns. For Kirsty and her partner Dean, this meant letting go of the parenting journey they had envisioned for themselves.
Kirsty also lives with a functional neurological disorder herself, adding another layer of challenges to caring for her daughter: “I cry quietly in the corner some days. I often get told off for not looking after myself, but parenting a disabled child means sacrificing a lot because your child’s needs always come first.”
The 32 year old said: “When you’re expecting, you have all these hopes and ideas about what it will be like, and the reality has been quite different. We love our Harper so much, and she is the most amazing little girl, but we’ve had to learn not to compare ourselves to other families.
“We first suspected that Harper was autistic when she was just under a year old. She didn’t respond to her name, and she couldn’t maintain eye contact with us. Later, she was non-verbal, until one day when she surprised us by reading out loud! Over time, we realised it was more complex than autism alone.”
On top of the usual childhood expenses, the Northams face additional bills for Harper’s care:
- Specialist therapies costing £160 a month
- Sensory tools costing about £500 a year
- Adaptive clothing costing £500 a year
- Specialist learning resources like SEND courses cost £500 a year
- Mobility buggy which costs £700
Combined, the Northams shell out an estimated £4,120 more each year than other single-child families. While they can access DWP support such as DLA and Carer’s Allowance, their benefit payments total £800, which falls short of covering Harper’s additional care expenses.
Kirsty said: “We’ve had to cut down the specialist sessions to save. Debt is an issue, and even when we think we’re in the clear, somehow we land back in it. My savings are non-existent, having been used to top up accounts for bills and unexpected costs. It doesn’t help that anything used for disabilities automatically has a ‘suped-up price tag’.”
The expense of bringing up a child currently stands at roughly £12,400 annually, according to LV, but parents of disabled youngsters face significantly steeper costs and require more inventive methods to manage the financial burden, as some must fit their employment around caring responsibilities.
Following Harper’s arrival, Kirsty abandoned her position as a teaching assistant and began working at Harper’s nursery to cut expenses. After Harper outgrew nursery age, Kirsty attempted to discover alternative approaches to balance the finances: “I had to give up earning a salary because I am the primary carer, so we are a one-income family living in Service Family Accommodation.
“Wherever possible, I try to freelance by writing, supporting brands with their social media, or selling goods like apothecary oils and handmade items to bring in extra income.”
Georgina Colman, founder of Purpl Discounts, said: “As a disabled person myself, I know firsthand how expensive life can be. That’s part of why I started Purpl, and I’m proud we’re helping families like Kirsty’s. But the truth is, they shouldn’t have to rely on discounts to get by. Life with a disability is expensive, and policymakers are failing to recognise that.”