The Motor Neurone Disease Association (MNDA) is calling for people with the condition to be exempt from a particular benefits test.
According to the charity, people with motor neurone disease should not have to be subjected to the Workplace Capability Assessment (WCA).
The MNDA has also been critical of the fact many people with motor neurone disease are not getting access to the Employment Support Allowance (ESA) because of this test.
It cites the case of Gary Dennis, who was told following a WCA that he would be able to return to work within three months and would therefore not be receiving ESA.
Dr Hilary Jones, interviewing Mr Dennis for ITV's Daybreak programme, said the decision was "appalling".
The MNDA is now calling for better education about motor neurone disease, so that assessors are aware of its effects.
Two people in every 100,000 of the UK population will develop the condition, according to the charity's latest statistics.
Find the nearest Barchester care home.