For many young people, leaving school is an exciting milestone – the beginning of adulthood, independence, and new opportunities. But for Finlay, and so many others with very high and complex needs, the reality is starkly different.
Because here’s the truth: there is nowhere for him to go.
Leaving School: The System Just Stops
Finlay has been in a specialist school, receiving essential therapy from physiotherapists, occupational therapists, and speech-language therapists to support his daily life. But once he finishes school?
- All therapy stops.
- His out-of-home respite services stop.
- His transition funding is barely enough for 2 days a week at a day service – if he could even get in.
That’s right – all of the support that has been in place for years just disappears overnight. Families are expected to somehow fill in the gaps, but the system isn’t designed to support them.
The Great Transition Myth
In theory, there’s a process called “transition”, where young people visit day services to find a place where they can belong, have a purpose, and stay engaged.
But here’s what we found out at the beginning of this journey:
- All of the day services are already full.
- Priority is given to people who live in residential care homes attached to day services.
- Since there is a freeze on residential placements, Finlay has no chance of moving out of the family home.
- The only time a residential space becomes available is when someone dies. (Yes, really.)
So, I have to ask – why do we bother going through a transition process when there is nowhere to actually transition to?
Community Inclusion? Great in Theory, Not Happening in Reality
The Government’s big focus is on community inclusion, helping people with disabilities live full lives within their communities. And in theory, that sounds wonderful.
But in reality? The community isn’t built with people like Finlay in mind.
- Public spaces lack proper accessibility.
- Changing Places bathrooms (fully accessible toilets) are still almost non-existent.
- Funding for therapy, carers, and support is completely inadequate.
- New housing developments aren’t being built with universal design standards.
- Public transport is a hit or miss depending on where you live, and accessible taxis hard to source and expensive
So, where exactly is this “inclusive community” that disabled people are supposed to be part of? Because right now, it doesn’t exist.
No Respite = No Breaks, Ever
One of the hardest realities of this transition is the complete loss of out-of-home respite.
For years, Finlay has had regular short stays at a respite centre, giving him a chance to socialise, experience different environments, and importantly, giving his mum a break.
But once he turns 21? It’s gone.
And there is no alternative.
That means:
- Mum can never go away overnight without Finlay.
- There’s no backup plan if something happens to her.
- She has to manage full-time care on top of work, life, and everything else.
Families like ours aren’t asking for luxury – we’re asking for the bare minimum: a system that recognises that carers need support too.
What Needs to Change?
This isn’t just about Finlay – this is happening to families all over New Zealand. And it’s not just frustrating – it’s terrifying.
So, what do we actually need?
- Access to day services for all high-needs disabled adults, not just those in residential care.
- Sustainable respite options so families can take breaks without guilt or fear.
- Real investment in community inclusion, not just talk.
- Therapy and specialist support that continues beyond school.
- More accessible housing and supported living options.
- Long-term planning so families aren’t left scrambling year to year.
The Bottom Line: The System is Broken
Right now, there is no real transition happening. It’s not a step into adulthood – it’s a freefall into nothingness, where families are left to pick up the pieces of a broken system.
This needs to change. Because disabled people deserve better. Their families deserve better. And we’re not going to stop fighting until they get it.