Like Ed Davey, I fear what will happen to my daughter after I die

It’s 7.30am and I’m desperately trying to get three of my four young children ready for school. 

My daughter Annabelle, nine, needs help getting into her school dress. This should only take a minute, but I’ve already been trying for 30. 

Annabelle is pacing the room and whenever I get close, she pushes me away. If I persist, she’ll lash out – potentially hurting me or herself.

‘Mummy, where’s our breakfast?’ asks my son Alex, five. ‘Can you make us a drink?’ joins in his twin brother, Oliver. They try to do it themselves so now there’s water dripping onto the floor. I need to mop it up before Annabelle slips over. 

I start to panic – they need my help, but Annabelle isn’t dressed and needs to leave for school. I frantically make her some food and help her to eat and drink while the twins are still waiting and looking at me expectantly. Now I feel guilty – they need me, too.

It’s the same chaos every morning.

Annabelle has a rare genetic condition called FoxP1. It’s a syndrome that causes multiple disabilities, including autism, cerebral palsy and global development delay. 

She’s predominantly non-verbal, and displays challenging behaviour. She needs assistance with dressing and undressing, toileting, eating and drinking – requiring supervision at all times.

Just like Sir Ed Davey, leader of the Liberal Democrats, I’m terrified about Annabelle’s future when I die because of the cuts being made to social care provision. It’s my biggest fear. 

Davey has a disabled son, John, and admitted that one of his ‘biggest fears in life’ is who will look after him when he’s gone. ‘He’s going to need 24/7 care for the rest of his life, I worry about who is going to look after him,’ Davey told ITV in an interview.

Like him, I am now acutely aware of my own mortality, and I worry how Annabelle would cope without me. Worrying about what will happen when I’m no longer around keeps me awake at night.

I realised early on that Annabelle’s older brother James, 12, would face tough decisions relating to her care when I die and didn’t want him to carry these alone. This is one of the reasons I decided to try for a third child – though I didn’t bank on having twins! 

Although I’m delighted that Annabelle has an ‘army’ of support who can fight for her when I no longer can, I don’t want any of my sons to feel obligated to provide that care themselves because I know how hard and all-consuming it is. They have their own lives to live, and I want them to be able to follow their dreams.

I love Annabelle immeasurably – and am enormously proud of her – but caring for her is relentless. Can I trust other people to look after her like I do? Will there even be anyone left to care for her? 

Mencap, the learning disability charity, are concerned about the hundreds of thousands of people working in social care who are leaving the sector because government underfunding means the wages are too low. A third of people have left the sector for good.

There is a huge shortage of social care workers because many are often only paid a little above minimum wage and can get more stacking shelves.

Annabelle is only nine, but I’ve already seen huge cuts in provision for SEND (special educational needs and disabilities) children, across the board – including both in therapies and social care support. 

This year alone, Annabelle’s speech therapy has been cut by 75%, and what little support is available to families like mine may soon be a thing of the past. 

When Annabelle was born, I had no idea she was disabled. Then she began missing milestones. 

Just after her first birthday a consultant told me she might never walk or talk. I felt like I had been hit by a truck. In an instant, my whole world was turned upside down.

I naively thought there would be support available, but there were long waiting lists for NHS therapies. So my husband and I began paying privately, spending hundreds of pounds each month on therapy we couldn’t afford. 

Instead of just being a mother, I was Annabelle’s occupational therapist, speech therapist and physiotherapist, too. I was trying to hold down a part time job, but Annabelle was in hospital so regularly that I had to give up work, making things even harder financially.

My husband Philip was in a demanding job, so I was balancing all the therapy and hospital appointments. My life had changed beyond all recognition, but my husband still had his job, his identity. I had lost everything. 

The demands of caring for a disabled child with a host of complex needs put a huge strain on our relationship.

I learnt we could apply for a carers assessment and I begged for some respite because I was at breaking point. I was turned down twice ‘because Annabelle didn’t require 24 hour oxygen’. We only got some respite after I gave birth to twins – and took our local authority to court.

Sadly, my experience isn’t unique – Mencap estimates that at least 2.6m people in the UK go without the care they need. Social care provision has slipped far below an acceptable level and is having very real consequences for millions of disabled people and their unpaid carers.

I’m traditionally from a Conservative family, but I won’t be voting for the Conservatives in this summer’s election. Their treatment of carers – and our disabled children – is unforgivable. 

Really, I don’t have much faith in any of the two main political parties – sadly, I don’t think politicians care about disabled people unless, like Sir Ed Davey, they have lived experience. 

Recent research by charity Scope echoes my thoughts. It found 8 out of 10 disabled people think politicians are out of touch with their lives while more than half (58%) of disabled people think politicians don’t care about them.

I want to see whichever government comes into power taking social care and SEND reform seriously. 

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I want the next government to fix the broken system. I want disabled families to be a priority and I want them to recognise the value of both paid and family carers.

It’s why I’m backing the Show Us You Care campaign, launched by a coalition of social care charities – including Mencap. 

They are calling for £8.4bn of urgent funding to meet current need and drive improvements; a funded plan for recruiting and retaining the social care workforce, and for social care workers to be paid a minimum wage that is in line with Band 3 NHS workers.

Whichever party delivers on this, will always get my vote.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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