| Ruth and I have good jobs, and own our own home; we have also had help from our families with the unexpected costs of the last two years. But even for a family like us, the financial burden of Max’s disability has been shockingly heavy. For those without our advantages, the so-called “disability price tag” is completely life-changing: the charity Scope estimated in 2024 that disabled households need an additional £1,010 a month to have the same standard of living as their typical peers, and spend an average of 67% of household income after housing on costs relating to disability. That isn’t for the “nice-to-have” (but actually crucial) stuff like extra physio or additional equipment that we’re able to pay for, but the absolute basics. Here’s how that breaks down for Max – and for other kids who aren’t so lucky. NHS community services | Postcode lottery in provision We live in Hackney in London, where NHS community services are relatively well resourced. Max had access to physiotherapy, speech and language therapy, and occupational therapy within weeks of coming home from hospital, and while there have occasionally been issues, the local provider has been consistent, capable, and responsive. That is crucial when the first two years are the greatest window of opportunity to maximise function for later in life – which is why we and a lot of other families in comparable circumstances pay for private physio as well. But I heard from one family with a child in a similar situation who were told that their waiting time for physio would be more than a year, and who were left in dire financial straits by paying for private provision instead. Last month, Maddison Reading, whose daughter Keeley does not speak, is autistic and has ADHD, told the Times of their 18-month wait for a speech and language therapist, and two-and-a-half year wait to see an occupational therapist. And these are not exceptional cases. “It is a true postcode lottery across all sorts of services,” Katie Ghose said. “It’s horrendous. You might have a two-year-old waiting half their life before they get their foot in the door for the help they need.” Data on the disparity in different areas is patchy – but the Disabled Children’s Partnership has dug up some striking examples. In Devon, the local integrated care board (ICB) reports 1,721 children waiting between one and two years for speech and language services; in Cornwall, not a single child waited that long. In Birmingham and Solihull, 8,213 children with special educational needs or a disability waited between one and two years to see a community paediatrician, often the gatekeeper for other services; in Wolverhampton, there were none. A freedom of information request by Autistica found that waits for autism diagnosis varied widely between different ICBs, from 129 days in Dorset to more than five years for children who needed a multi-disciplinary assessment in Kent. And in 2021, a report by the Education Policy Institute found that children living in the most disadvantaged parts of the country were less likely to be formally recognised as having special educational needs and disabilities – suggesting a “rationing of support” in areas of high need. Equipment | Why it’s often expensive to be able to save money Max is now getting big enough that he needs a supportive stroller, a kind of interim solution for toddlers who need postural support before they’re big enough for a wheelchair proper. Max trialled the one offered by the NHS, but it was so heavy and cumbersome as to be deeply impractical. Instead, the NHS offered us a £2,500 voucher to use as we liked – which is amazing, and means that we will be able to get Max a model that weighs half as much for just over £1,000. Even this is a pretty painful additional cost, obviously – and there are accessories to pay for, too. But it’s also utterly out of reach for many other children. There are all kinds of other examples of the multiplying benefits of having resources. Max has just been approved for NHS funding to cover an Eyegaze device that he’s learning to use to communicate, sparing us from trying to find £10,000 – but he might not have been approved if we hadn’t been able to afford the hefty cost of a three-month loan to develop his skills, and a wonderful private speech and language therapist because the local NHS services couldn’t provide someone who knew the technology. “This kind of practical equipment is a lifeline for families,” Ghose said. “But there are huge differences in families’ abilities to get their hands on it. To begin with, there’s how you know where to go to get it. There’s the lottery of whether your health visitor puts you in touch with the right services. And there are brilliant charities that can help with funding – but for a lot of people, the time to do the research just isn’t available.” Respite and support | Inadequate provision puts pressure on relationships Ruth and I both have decently paid jobs with employers who are flexible about accommodating the extra parenting pressures that come with a disability. That fact, plus a crucial assist from the bank of mum and dad, means that we were able to hire a brilliant one-to-one nanny/carer for Max, who puts him through his physiotherapy paces every day while we’re busy with our Very Important Typing. Even in our leafy neighbourhood, the provision of decent nursery care for children with disabilities is pretty dismal, and if that was our only option, we probably wouldn’t be able to work full-time. For many other parents, there’s no choice at all: 40% of SEND parents leave their jobs, and one in three reduce their hours, blaming a lack of local authority help and school support, or inflexible employers. Of course, if you give up work to look after a disabled child, that is likely to come at a real cost to your own wellbeing – which means you would benefit hugely from the short-break respite care which is supposed to be available. That, too, is very variable: freedom of information requests by the Disabled Children’s Partnership to local authorities found that whereas almost all short breaks could accommodate children whose SEND needs were related to sensory issues or communication, that fell to 67% when the child was in a wheelchair, 53% if they needed a hoist to get into bed or the bath, and 16% if they needed an oxygen supply. “Every day we hear about people giving up their careers and suffering severe financial strain as a result,” Ghose said. “Families suffer mental health strain because they haven’t been supported to support their disabled child.” That leads to huge pressure on relationships: a 2023 report by the Disabled Children’s Partnership found that 38% of parents of a disabled child had suffered relationship breakdown in the previous year. Intangible advantages | The impact of ‘cultural capital’ Quite soon after Max’s injury, Ruth and I started to research the leading neurologists in the NHS specialising in cerebral palsy in children. We asked around a bit and identified two highly credentialed experts working in London hospitals; it wasn’t much more difficult to work out their email addresses, which weren’t publicly listed. We sent them carefully worded messages, and followed up politely but persistently. Before long, we had appointments with both of them, even though they weren’t part of Max’s original care team. All of this cost nothing financially. But it required what we might think of as cultural and social capital in spades: the knowledge of how to navigate systems and institutions that might seem reflexive to a middle class family but is unattainable for lots of other people. It also took time – which we have more of than many others, partly because of the support described above. The same pattern is replicated in lots of other areas: persuasively filling out the tortuous disability living allowance form, prodding our local services to get the help Max is entitled to, persuading the council to do something about the dismal provision for disabled kids at our local playground, and a million other advantages I probably didn’t even notice. “It’s present in so many different things,” Ghose said. “Let’s say you have a single mother who is very sleep deprived, and may have poor mental health: she can see her child is developing differently from her friend’s child, but she just doesn’t have the time or the bandwidth to do the research you need to navigate the system. When resources are so tight, it’s the children whose mums and dads can’t do the chasing who will be put to the bottom of the pile.” There isn’t very good data available on how disabled children’s life chances vary according to their parents’ backgrounds – but all of the above suggests that the impact will be vast. “If disabled children have their needs met at the earliest opportunity and there are people thinking with ambition about their future, that makes the world of difference,” Ghose said. “But for children left on waiting lists for years, or whose parents’ have a bureaucratic mountain to climb, things can go very badly wrong.” | 