Gaining Independence: My Journey to Living with Support
When I turned 30, I felt a strong need to gain more independence. I wanted to explore how this could work in a way that respected my parents, who had been my primary carers for all of my life.
This wasn’t just about freedom for me – it was also about giving them the flexibility to enjoy their retirement but at the same time planning for the future. We had some quite difficult conversations, but deep down, we all knew why we were pursuing this route. That was the first of many challenges my family and I faced on this journey…
The Funding Process
Applying for funding was a difficult and, at times, degrading experience. To qualify, I had to describe every little thing my condition prevents me from doing – which felt completely at odds with how I was raised. Like many people with Brittle Bones (and disabilities more broadly), I was used to focusing on what I can do, not what I can’t.
The next hurdle came when Continuing Healthcare (CHC) and Social Services started debating who should fund my care. Each seemed more interested in protecting their budgets than helping me. Social Services argued my needs were purely due to my disability, while CHC claimed my care was about enhancing my social life as much as my health.
At one point, I was being asked how long it took me to go to the toilet or get dressed – which I found quite demoralising. Eventually, CHC agreed to fund my care package. This allowed me to start bringing in support when my parents were away, such as during holidays or weekends.
Working with Support Workers
The relationship between a support worker and a client is unique and difficult to describe unless you’ve experienced it. Hopefully, my story gives a sense of what it’s like.
To find suitable support workers, I went through a specialist agency where my sister-in-law worked. That made the transition easier as she guided me through the process. My first two support workers couldn’t have been more different – a young lad from the northeast, brand new to care work, and a lively guy from the Philippines who was barely five feet tall, but brilliant at his job.
My first real test came when I was invited to a friend’s stag do in Portsmouth – the same day my new Motability car arrived. It was a big moment: my new car, my first big trip with support, and a weekend away with friends. My support worker got fully into the spirit, dressing up as a pirate like the rest of us.
But that night also taught me a vital lesson. After he had a couple of beers, I had to remind him that I’d need his help with personal care later. He took it well, and the night went on smoothly, but it was a clear sign I needed to establish boundaries.
Looking back, that experience was a turning point – my first real understanding of how to manage the professional side of having care support.
Taking the leap to relocate
After about a year of part-time support, I learned that my workplace was relocating from Birmingham to Bristol. I had two choices: take redundancy or move. It was a big decision for anyone, but especially for me. Still, I knew this was my chance to try living independently.
My employer was supportive, offering me six months to try the move with the option to take redundancy if it didn’t work out. So, in September 2012, I moved to Bristol with a live-in support worker who already lived in the area.
He had a family, so it wasn’t a long-term arrangement, but having him there during those early weeks made a huge difference. He even spent a weekend with my parents beforehand to help with the transition.
Adjusting to live-in support
Moving to a new city with full-time, live-in support was life-changing. Within a year, I’d gone from occasional help at home to full independence.
Having live-in care can be intense, and building trust takes time. But over the months, I learned what worked best for me and how to balance my independence with accepting support.
Looking back, I feel incredibly lucky. The independence I’ve gained has opened up opportunities I never imagined…even something as simple as hosting my family in my own home still feels special.
Funding challenges and Appeals
Although CHC initially funded my care, this changed after annual reviews and appeals. The funding stopped and losing that funding was one of the hardest experiences of my life.
The appeal process was stressful beyond words – my job, independence and whole way of life depended on the outcome. After a lot of effort from many people, Social Services stepped in and began providing direct payments.
My care package is now joint-funded by CHC and Social Services, which I hope signals a more collaborative approach to adult social care in the future.
Looking Back
Despite all the challenges, seeking support and pursuing independence remains the best decision I’ve ever made. I feel fortunate that I have a strong support network around me and, whilst the journey has been far from straight-forward, I can testify for it being truly worth it in the end.
I’m now 44 and can look back on the last 14 years with memories that might not have been possible had I not taken the decision. Equally, I have many more goals I want to achieve in the future.
If you’re going through a similar process and want to talk, please feel free to reach out. I’m always happy to share my experiences and offer any advice I can.
