For almost 20 years, families of the severely disabled have been fighting to look after their loved ones at home, and to be paid for it. Now, the battle is going beyond the courts.

Like a precious gift, the Appeal Court judgment was forwarded carefully through cyberspace. Emails shuttled from lawyers, to academics, to journalists and back again. Some had subject lines like "this is interesting" or "check the

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"I have no future to look forward to"

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"You are expected to simply be grateful"

Families' fears over being forgotten