‘Planning for my disabled son after I die keeps me awake at night'

Telegraph

31-05-2025

Suzanne Robinson's 15-year-old son, Zac, is severely autistic and non-verbal. 'If he's in the garden, he'll pick up leaves, he's eaten a snail before, he'll drink from a puddle,' says Robinson. 'He has no concept of personal safety, so you can't leave him alone for a second, because anything could happen.'
Zac needs one-to-one care around the clock and lives full-time in a specialist school in Thatcham, Berkshire, called Prior's Court, funded by his local authority.
While his care is paid for, having a disabled child is hugely expensive for Robinson and Matt, Zac's father. On average, parents spend an extra £322 a month on their child's condition, such as higher energy bills and food costs, according to disability charity Contact.
'Everything he needs is expensive. We've spent a lot on private therapies. We still spend loads on supplements and things, which may or may not help, but you do everything you can,' adds Robinson. 'We've spent hundreds of thousands of pounds, probably, over 15 years, trying to help him as much as we can, really with pretty little result, if I am honest.'
But the big concern for the couple is about what will happen to Zac – and their two daughters – when they die.
In England, a council will generally help to pay for care costs if a person has savings of less than £23,250. An inheritance could change the picture, especially if a home is inherited, as councils can require that homes be sold to help pay for care.
Having a live-in carer costs between £800 and £1,600 a week, according to the NHS, while rooms in a residential or nursing home can cost as much as £850 a week.
'The worry is for the future. You're trying to protect your child as much as possible and provide for them without it affecting their entitlement to social care, because this stuff is ruinously expensive,' Robinson says. 'You don't want to leave it all to the girls, because that's not fair, but also we don't want our entire estate to be taken for his care so that they have nothing.'
She adds: 'It keeps me awake at night. What's going to happen when we're not around? I don't want the burden of it to fall on my daughters.'
'I realised everything I'd put in place was wrong'
The Robinsons are far from the only family to have to deal with this dilemma.
Rhiannon Gogh, 47, also has a 15-year-old son, Tristan. Like Zac, he has severe autism, although he lives at home.
The family realised something wasn't right when Tristan didn't hit the same milestones as his older brother, Henry. She says: 'We could never put him down. He cried a lot. He wanted to be rocked constantly, even when he was asleep.
'He never, ever looked at me. He never answered to his name. He never pointed at anything. He never responded to me talking to him. He seemed to be locked into a separate world. He used to run away from me at nursery when I would go to pick him up.'
Like the Robinsons, Gogh has had to think about what will happen to Tristan when she and her husband die. Handing down estates to those without mental capacity is much harder than she expected. Not only does she need to think about making sure he can still access funded care, but levelling a large sum on a person without full mental capacity could make them a magnet for scammers.
'I quickly realised that all of the traditional financial planning that I'd put in place was completely wrong,' she says.
'It was going to cause him harm. He wouldn't be able to access his inheritance, he would be very, very vulnerable in receipt of it, and he would lose his access to care, support and benefits if I were to suddenly just land a chunk of money on him.'
Parents of disabled children often have to give up work – which only exacerbates money worries. Robinson, 50, previously an actor and events organiser, is now a therapist. But when Zac was small, she stopped working to look after him, leaving her husband Matt, 49, who works as a business coach, as the sole breadwinner.
'Because of Zac's needs, no nursery would take him, we couldn't get him looked after, so the reality is that my career went completely on the back burner while my husband's took off.'
She claimed carers' allowance, which worked out at £66.15 a week by 2019. It is now £83.30 a week. By the time Zac was nine – and with two younger daughters to care for – Robinson says she was 'on her knees'.
Things got easier once Zac began attending residential school. But when he turns 16, his case will be passed to adult social care.
The family faced a three-year battle to get him into residential care originally, and will face a similar process once again, including hiring lawyers to argue Zac's case. 'We'll have to go through the whole process again of proving his level of need and trying to get them to pay for it.'
If the family fails to get his care extended into adulthood, their world could be upended again. Zac would have to move home, and Suzanne is particularly worried about how she will look after a fully-grown man as she ages. She asks: 'When he's 35, I'll be 70. Am I going to have to change a 35-year-old man's nappy at 70?'
Gogh also gave up her corporate job 10 years ago to look after Tristan after he ran away from school. She now works as a financial adviser, specialising in helping families with severely disabled children. She has written a book, Planning with Love, on the subject.
'It's incredibly draining on finances,' Gogh says. 'He breaks things, he falls into things, he drops things, he bites clothing. He loves to see things dismantled and broken.
'He took an iPad once and smashed it on the corner of the table to see what happened. He's thrown a television out of a window.'
A £400 car seatbelt was used just once before being thrown aside, because Tristan 'hated it'. She and her husband are planning a 'retirement for three', as he will be unable to support himself.
'My other son plays second fiddle'
Setting up your estate to ensure the future of your disabled child can be complex and often requires expert help, which is another cost. To ensure that the disabled person is eligible for care, while also receiving an inheritance, money can be left in trust.
A disabled person's trust – which can be set up for someone eligible for disability living allowance or personal independence payments (PIP) – is specially designed for those without capacity.
A discretionary trust can also be used, although it may attract higher tax bills. Trustees will need to be appointed to make decisions about what happens to the money.
Those who cannot look after their own money may also need a deputy, who is appointed by the courts to make decisions for them, or might have their benefits managed directly by the Department for Work and Pensions.
Choosing trustees is a minefield of its own. Gogh says: 'Who would a natural trustee be? You might think the natural choice would be a sibling, but then you think: 'Is it really fair to put that pressure on them by making them a trustee?''
Her eldest son, Henry, is just 17. He is very aware that, at some point in the future, he will become responsible for his younger brother. It's a heavy burden for a teenager. Gogh says: 'My poor other son has no choice, and he plays second fiddle, which is heartbreaking.
'I remember him saying to me in the car about a year ago: 'What if I go on holiday to Japan, in the future, when you're not here. Do you think someone will know how to get hold of me if something happens to Tristan?'
'He's already thought about that. He was only 15 at the time.'
Planning for the future also raises the question of fairness between siblings. Robinson says that she doesn't want to leave all the money to her daughters, cutting Zac out entirely. But on the other hand, leaving everything in trust for Zac would feel equally unfair.
'You don't want to leave it all to the girls, but we don't want our entire estate to be taken for his care so they have nothing. That's just not fair. It's something families don't have to think about until you're in that position.
'You assume that you'll be able to split the estate between your children and they will all be able to look after that money themselves, and have the capacity to manage money. And of course, none of that applies in this case,' she says.