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A BENDIGO woman whose son was left severely intellectually disabled after a botched heart surgery in the 1970s is the latest to join the chorus line of parents demanding a change in the way disabled adults are provided for.
She echoed calls by an Eaglehawk family for a taskforce to urgently look at the accommodation crisis faced by adult disabled children and their parent carers.
The woman, who wished to remain anonymous, said she was told by specialists in the 1970s to put her son in an institution and forget she had him.
The trained nurse refused to give up her son, then only one, and was labelled a "non-compliant mother".
While attitudes towards disability have improved markedly since then, the woman said disabled people and their parents still struggled to get by.
After a long and exhausting battle with bureaucracy, she finally managed to get her son, now 44, into supported accommodation.
Now in her 70s herself, she said she would not have been capable of caring for her son, who has the mental age of a 5-year-old, for much longer.
She estimated her decision to care for her son rather than place him in institutional care saved the government about $4 million over his lifetime.
That saved money should have been directed towards providing for disabled people in the future, she said.
The woman said while she had hoped the National Disability Insurance Scheme would alleviate the burden, those hopes had been dashed.
"The NDIS money isn't going to solve the problem; it will all be creamed off before that stage," she said.
"The dollars from the NDIS aren't going to touch the ageing carers and their sons and daughters."
The woman said she wanted disabled people to be able to live in villages with nursing staff on hand to attend to them.
"We have to start building relationships and building security into their lives," she said.
"We want them in an environment that is a community, not an institution."
She said a lack of political will was to blame for the inaction.
"The problem is political. It's not the people in the department; they're doing their darnedest to help," she said.
She also called for changes to the laws which state that disabled people have the rights to make all their own decisions.
Severely intellectually disabled people who are assessed as such by independent medical professionals should remain permanently under the guardianship of their parents, she said.
"We don't allow 5-year-olds to make their own decisions, we give them choices. Why would we do differently with someone with the mental age of a 5-year-old?" she said.
