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What happens to my disabled son when I die?

Mark hopes his 'death plan' will keep son Steven out of an institution

Mark Neary’s recurring nightmare is that six months after his own death, son Steven who has autism and learning disabilities will end up in a residential unit similar to the one where he was detained in 2010.

Later that same year, a human rights court case ruled that Steven’s detention was unlawful. Nowadays he lives independently, with support painstakingly managed by dad, Mark.

It's a tough thing to have to think about. Routine is vital for Steven, so Mark hopes that a comprehensive death plan document including everything from details on paying staff to instructions for making compilation tapes, will ensure Steven thrives after he’s gone.

With Emma Tracey.

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