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.
Welcome to the ” You don’t belong anywhere club”. This became our reality mid December and like you and your family, we are hurting big time. Add in a bit of child to parent abuse too for us -may as well put it all out there. No one seems to be listening. Missed the consultation today as had a sick support worker last night and no support worker today. Even my fighting spirit is too exhausted today. Take care x
I have to be honest, I’m surprised to see a family member asking for more day services. Day services are just places for disabled people to waste their days, and their lives. Every single person has gifts and talents to offer, including disabled people. What does your loved one have to offer? What does an ordinary life look like, with belonging to the community, existing in ordinary spaces? What barriers exist? How can they be overcome? Just something to think about rather than asking for more day services, which the disability rights movement has been opposing for a long time.
If you’d visited the Day Service that we did you’d understand. My son enjoys community inclusion, and he enjoys hanging out with his friends. At a Day Centre (hub) he gets to do that for a couple of days a week. The rest of the week he’s actively engaged in the community, at least the areas which are accessible to him. We are advocates for inclusion and a day centre doesn’t have to be a place he is wasting his time in. It really depends on the day centres and the passionate people who run them.
But why a day program, why not a life customized for him? Day programs are just a congregation of people with nothing in common except for being disabled. I’d recommend exploring the egl principles and why families and disabled people have been wanting to end day programs, and instead have real inclusion in ordinary places with the rest of the community. I’m not criticizing you, we all do what we need to do in times of stress, but rather than dreaming of more day bases, I wonder if when things are a bit better you could think of what you REALLY dream of for your boy.
Meredith, my dream for my son is community inclusion. I always use EGL principles, unfortunately living in Auckland we haven’t had flexible funding to imagine this to date. We did have a taste of it around Covid and it was wonderful, but since March 2023 criteria has become restricted again. I know people in the EGL regions who seem to access a much higher funding threshold to enable a true good life. Three on one adult sounds like a wonderful funding package to have. My son is the happiest of lads, he still lives at home and lives a fun-filled life. Unfortunately mainstream school shut him out at the age of 5, he’s been happily attending a Special School. This allowed funding to be pulled together to ensure funding for therapists and specialist teaching was available. Specialised day services would only be part of my sons life, just like employment and school is to anyone. There is only a small percentage of the disability community where day services can be wonderful hubs of creativity and belonging. That is for the very high and complex needs community. My son thrives on inclusion and belonging, this will always be our goal for him. He needs purpose in his day and familiar happy faces. The day programme I have been looking at is a congregation of happy young adults who get together cook, do art, physical activity, spa pool activities, sensory room activities and basically seem very happy to be there. It is not full-time as funding doesn’t allow it, two short days from 10am to 2.30pm is what a day typically looks like. They then have five more days to explore community inclusion outside a day service dedicated around his individual needs. I would love to have a chat with you Meredith to hear your alternative ideas to day services and how the funding can allow this to happen. I especially would like to know how this works when I am no longer here to facilitate his program.