People with multiple sclerosis (MS) could face costs of £110,000 for social care over the course of their lifetime, according to the MS Society.
It is calling on the Government to end the 'catastrophic' costs and give social care the funding it needs.
It says the Government must invest urgently in social care in the upcoming Autumn Budget and include proposals in its forthcoming green paper to make care affordable.
The charity says two in three local authorities in England have introduced new or higher charges for care in the past three years, putting it further out of reach for many who need it.
In a recent survey of nearly 4,000 people by the society, one in five people with MS said they could not afford the support they require.
Genevieve Edwards, director of external affairs at the MS Society, said: 'The question of how social care should be funded has been left unanswered for too long, leaving people with MS paying the price for a system in crisis.
'We’re urging the chancellor to give social care the immediate investment it needs in this upcoming Budget so people can get the care they need now.'