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

At 7:30 in the morning, I'm struggling to prepare my three out of four young kids for school.

I am currently having trouble helping my nine-year-old daughter, Annabelle, put on her school dress. It should be a quick process, but unfortunately, I have been struggling with it for 30 minutes already.

As I observe Annabelle, she is walking back and forth in the room and whenever I try to approach her, she forcefully pushes me back. Even if I try to continue, she may respond in an aggressive manner which may lead to harm to herself or me.

"My mom, where is our breakfast?" inquires my five-year-old son, Alex. His twin brother Oliver jumps in and asks, "Can you make us a drink?" They attempted to make it themselves, but now water is leaking onto the floor. I should clean it up before Annabelle falls and gets hurt.

I suddenly become anxious as they require my assistance, but Annabelle is not yet ready for school and needs to get dressed. I hastily prepare some food for her and support her as she eats and drinks, all while the twins are awaiting my aid and gazing at me hopefully. Presently, I feel remorseful as both parties need my attention.

Every morning is a repetitive mess.

Annabelle suffers from an uncommon genetic ailment known as FoxP1. This syndrome leads to various disabilities, among them are cerebral palsy, autism, and global development delay.

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She mostly communicates without using words and shows difficult behaviors. She requires help in putting on and taking off clothes, going to the toilet, eating, and drinking. Moreover, someone must be present to watch over her all the time.

I share Sir Ed Davey's deep concern about what will happen to Annabelle once I pass away, given the reductions in social care funding. This is the thought that most frightens me.

Davey, who is the father of a son named John with a disability, recently shared that he has a significant concern about the future. He revealed that one of his greatest fears in life is regarding who will take care of John when he is no longer around. Considering that John requires constant monitoring and assistance every day, Davey feels anxious about his son's future well-being and who will be able to provide him with the care he needs. This issue has been a source of worry for Davey, and he discussed it in a recent interview with ITV.

Similar to him, I am now greatly aware of my limited lifespan and I have concerns regarding how Annabelle would manage in my absence. The thought of the future when I am not here troubles me to an extent that it deprives me of my sleep at night.

I came to the understanding quite early that when I'm no longer around, Annabelle's older brother, James, who is 12 years old, would encounter a lot of challenging choices regarding her upbringing. I didn't want him to deal with such a burden on his own. That's why I chose to try for yet another child. Nonetheless, I wasn't expecting to have twins!

I am very happy that Annabelle has a group of people who can support her when I cannot, but I do not want my sons to feel obliged to take on that responsibility. It is extremely difficult and requires a lot of time and dedication. I want my sons to have the freedom to pursue their own goals and live their lives without the burden of caring for someone else.

I have a deep affection for Annabelle, and I am incredibly proud of her. However, taking on the responsibility of her care is never-ending. I wonder if I can count on others to provide the same level of care as I do. I worry if there will be anyone left to care for her in the future.

Mencap, a charity that supports people with learning disabilities, is worried about the large number of social care workers who are quitting their jobs due to low wages as a result of government underfunding. According to reports, one-third of employees in the social care sector have permanently left their jobs.

The availability of social care workers is limited as they are compensated slightly higher than the minimum wage. This makes it simpler for them to choose alternative jobs such as shelf-stacking which pays more.

Despite being just nine years old, I've noticed a significant decrease in the resources available for children with SEND (special educational needs and disabilities). This includes a reduction in both therapy and social care assistance.

Only in this year, the speech therapy provided to Annabelle has reduced by a significant 75%. Moreover, the limited assistance that is obtainable for families like mine can quickly become extinct in the near future.

When my daughter Annabelle was born, I had no knowledge of her disability. However, as she grew up, I began to notice that she was not reaching the expected developmental milestones.

Right after my daughter turned one year old, a specialist informed me that there was a possibility she would never be able to walk or speak. I was taken aback as if I had been struck by a vehicle. Everything in my life changed suddenly and drastically.

I was foolishly optimistic that assistance would be accessible, but we encountered extensive queues for NHS treatments. As a result, my partner and I made the decision to pay for private services, which demanded that we shell out a large amount of money each month despite our financial constraints.

Instead of solely fulfilling the role of a mother, I was also responsible for fulfilling the duties of Annabelle's occupational therapist, speech therapist and physiotherapist. I attempted to continue working part-time, however, Annabelle was admitted to the hospital frequently, forcing me to resign from my job, creating a more challenging financial situation.

Philip, my husband, had an intense job. I had to manage all the therapy and hospital visits, which made my life completely different. However, Philip's job remained intact, along with his sense of self. On the other hand, I lost everything.

Taking care of a child who has disabilities and requires various kinds of support has put a significant burden on our relationship.

I discovered that we had the option to request a carers assessment, so I begged for a break because I was incredibly stressed out. Unfortunately, I was denied twice because Annabelle didn't need oxygen around the clock. It wasn't until I gave birth to twins and went to court with our local authority that we finally received some much-needed relief.

Regrettably, my encounter is not exclusive - according to Mencap, around 2.6 million individuals in the United Kingdom are deprived of the essential assistance they require. The standard of social care service has considerably decreased, and this is causing significant problems for uncountable disabled individuals and their non-paid caregivers.

I come from a Conservative family, but I have decided not to cast my vote for them in the upcoming election. The way they have treated carers and disabled children is unacceptable and cannot be overlooked.

Discover Show Us You Care Campaign Details

The charity called Mencap, which supports people with learning disabilities, is teaming up with 50 other charities to demand that the government deal with the problem of not having enough resources for social care. They are also asking for more money to be given to the social care system and for social care staff to receive better wages and recognition. If you want to join the cause, you can show your support by visiting mencap.org.uk/showusyoucare.

One can keep up with Kate's experiences as a parent of a child with special educational needs by following her on Instagram @girlaboutsend.

Honestly, I don't really trust either of the top political parties. Unfortunately, it seems to me that politicians don't really pay attention to the needs of disabled individuals unless they have lived through it themselves, as seen with Sir Ed Davey.

A recent study conducted by the charity organization, Scope, confirms what I've been thinking all along. The report showed that 80% of disabled individuals believe that politicians are disconnected from their reality, and the majority (58%) of them believe that politicians don't have any concern for their wellbeing.

I hope that any incoming government takes the issues of social care and SEND reform seriously.

My desire for the upcoming administration is to mend the faulty system. I sincerely wish for families with disabilities to be given utmost importance. It's high time for the government to acknowledge the worth of both caregivers who are earning a wage and also those who are family members.

That's why I’m supporting the Show Us You Care initiative that was initiated by a group of charities that focus on social care, which includes Mencap.

They are requesting £8.4 billion in immediate funding to fulfill present requirements and implement enhancements; a financing blueprint to attract and keep a dependable social care staff, and to pay social care workers with a salary that matches Band 3 employees of the NHS.

I will consistently support the political faction that fulfills this promise.

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