Let me start with a gentle warning: this is just our story. Access to social care - and especially respite - is a postcode lottery, and I send heartfelt solidarity to anyone currently navigating this maze.
Back in 2014, when Andrew was six, we first approached Manchester City Council (MCC) to ask for occasional respite. At that point, we’d spent six years in full-time care mode: no nights off, no weekends away, no family nearby to step in. Six years of sleeping with one ear open. Six years of caring for someone with the capacity (and bowel habits) of a wayward toddler. We were exhausted.
We underwent a needs assessment - at the time, MCC bundled it into a single “parent and child” review - and were promptly declined. The logic? We hadn’t had a nervous breakdown, so apparently we could cope. We appealed. We lodged a formal complaint. And in 2016, we took our case to the Local Government Ombudsman … and won.
That victory didn’t exactly win us popularity points with Children’s Services, but it did force MCC to reassess us properly. And lo and behold, they agreed we’d benefit from respite - not through their own services, mind you, but via a Direct Payment. The implication seemed to be: if we were savvy enough to take them to the LGO, we could probably manage our own care arrangements. Fair enough. They were right.
In 2017, we received our first payment and began working with Together Trust, a local charity. Slowly, Andrew got used to staying overnight at one of their houses, and we got a taste of what it meant to breathe again.
Since then, we’ve remained engaged with MCC Children’s Services, which means enduring their quarterly safeguarding visits. Yes, every three months a social worker comes to inspect our home - including Andrew’s bedroom - under legislation designed for children at risk. There are no safeguarding concerns, but the law doesn’t differentiate between disability support and child protection. So every three months, we smile politely while someone checks we haven’t installed chains, restraints, or a medieval rack. (That’s a joke. Mostly.)
Over the past eight years, we’ve swallowed our pride, accepted the bureaucracy, and welcomed a rotating cast of social workers - four or five so far, none of whom seem to stay long. The award has gradually increased, and thankfully the cost of respite hasn’t, so we now receive enough funding for one night of respite per month.
Why persist?
Because respite isn’t just about catching our breath. It’s about preparing Andrew for a future where he can thrive independently. We’re older parents; we won’t always be here. He needs to be comfortable waking in a different home, supported by different carers, managing his daily needs with dignity. That’s not just a luxury - it’s a life skill.
If there’s one thing this journey has taught us, it’s the power of persistence. We didn’t set out to be campaigners or legal challengers - we just knew that Andrew deserved better, and so did we. “No” wasn’t the end of the conversation; it was the beginning of a longer, harder one. If you’re in the thick of it now, know this: your voice matters. Keep asking. Keep challenging. Keep showing up. Because sometimes, the system only listens when you refuse to be quiet.