Autism as a barrier to housing in New Zealand?

Two days ago I spotted a story about a family who were unable to get a decent home – even to get a home through the State housing system – because of the behaviour of their three autistic children. Predictably, when I turned to a large local forum to see how the public was reacting to the story, I found people attacking the couple for breeding at all, and for not stopping their breeding after the first two turned out autistic. There were also the usual ignorant comments about how the parents just need to control their animal children. The comments I read made me feel ill and depressed me to such a degree that I put the story on the back-burner, telling myself I’d deal with it when I was feeling stronger and less emotional.

By 401K 2013, Via Flickr

Today, Campbell Live – a local current affairs show – ran a story about an elderly mother in Christchurch trying to find a temporary home for her two autistic sons. Her sons are in their 50’s, and have the mental age of toddlers. They look to be lovely men, with big hearts and gentle souls. The story their mother told of their history was very similar to Temple Grandin’s story, from the harsh coldness of the diagnosis so many decades ago, to the diagnostician’s insistence that their only future could be in an institution and that their mothers would be better off forgetting they ever had them. In both stories too, the mothers did everything they could to love and care for their children in the face of such cold pessimism. But where Temple became an expert in her field, these two boys have intellectual disability alongside their autism and so their story goes a different route, still it was interesting to see the historic parallels in such different countries.

All that aside, the point of the Campbell Live story is these two lovely men – who have full-time carers, and who only need a home for 6 months while their home is rebuilt – can’t find a home in Christchurch. The reason they can’t find a home appears to be one of discrimination, as the mother explains in the piece. They appeal for anyone with a home available in Christchurch to please offer it to these lovely men (the email, if you can help, is campbelllive@tv3.co.nz .)

All that reminded me of a third story, one I shared only in passing in a post I did in 2011. In that story, a family was being kicked out of their home and having trouble finding a new one, because of their autistic son’s destructive behaviour. Again, the behaviour was beyond the child’s ability to control. Again, the parents were deeply loving and dedicated to their child. Again, the housing options available to them were as good as non-existent.

Here’s what I want to say about these stories and what they tell me: New Zealand has a very serious gap in meeting a fundamental need (and arguably a fundamental right) to have a place for people to live; even when the people have the money to pay for board (all three examples have families who are willing and able to pay board, this is not a matter of pure charity). If the private market refuses to respond to the needs of these families and individuals – whether it is because of discrimination or founded fears about what may happen to their homes – then where must these families turn? For the Christchurch men, they simply need people to stop discriminating against people who are different, but for the other two families, they need an option that doesn’t seem to exist; someone willing to take on tenants who are likely to cause some damage, but through no intention or fault of their own.

What you need (I hear some of you say), is a State Housing system, that is willing to take in those who the private sector turns away! But we have that here already, and even they turn away these hard cases (see the three autistic kids story in particular for where this is made abundantly clear). Why do we even have a State back-up safety housing option, when it won’t deal with the hard cases, where totally innocent disabled children face homelessness? What’s the point? It’s OK to look out for the poor, but the disabled are on their own..?

I’ve seen the public voice the alternative of sticking these kids in institutions “where they belong.” You need only watch the Campbell Live piece on the Christchurch family, to see the hurt and damage that can do (and I do urge you to watch the video, it will break your heart though). You need only see the love and dedication of these parents of all three examples, to know that sticking these kids in institutions will create more problems than it solves; they are already in loving homes, why would you encourage tearing them apart, rather than encourage proper available housing that allows the family to stay together?

The stories that make it to the news, are only ever a portion of the reality out there. It takes a certain level of personal fortitude and know-how to get the media to hear and share your story. I can only imagine how many other families with autistic and disabled children, are struggling through a similar situation.

My family too, are renters, not home owners. It’s hard to earn enough money for your own home when you have a child with very high needs. Not only do they require your time more, they cost more to care for too, there is no way a disabled child will not significantly impact on your finances, and government support doesn’t ever come close to matching the costs. That’s reality, you live with it, you make it work, but it can leave you stuck in a position of renting for that much longer, and thereby leave you very vulnerable to just this housing problem. When you have a child with high needs, you also tend to be restricted on what areas you can live, because services availability and Special Schools or mainstream schools with appropriate supports, can force you to move to or stay in particular areas. I know of many families who have moved to access appropriate schooling or support for their autistic child, and again, we are a family who have had to face this issue too.

The point being, that between lost wages and having to live in the “right” area for your child’s needs to be met, this housing issue is foreseeable and will not go away. If anything, under the current high-pressure housing market, it is only going to get worse. Something has to change, whether it’s in people’s ignorant attitudes towards the intellectually disabled, or in the government’s attitude towards why it bothers to be in the housing market at all. (Personally, I’d also love to see change in the current highly restrictive zoning on schools and support services, but one thing at a time!) If things don’t change, there’s going to be a growing underclass of the poor and disabled, without decent (or any) accommodation. Or we could just stick them all in institutions and tell their parents not to breed, since so many New Zealanders think that’s an adequate response to a family in strife. It makes me fearful, for my son, for myself, for all those other families, when I read those sorts of responses. When did we become a country that sees a call for understanding and compassion, as a good opportunity to threaten people instead?

Autism is a barrier to getting a home in New Zealand (it will even stop you being allowed to stay in the country). Can we find a way to turn that sentence into a lie?