Out of 500 families questioned by the charity, 60 per cent also said they lack information on local, regional and national disability organisations.
The online survey of families across the UK found that more than half of respondents could not access information on relevant grants and more than a third said they would like a factsheet about available benefits to make access to support easier.
Derek Walpole, chief executive of the Family Fund, said that many families caring for children "are isolated and do not have contact with professionals or other sources of information".
"Over the coming months, we will be exploring opportunities to fund the development and delivery of additional information in partnership with other suitable organisations to help improve the wellbeing of families," he added.
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