Maureen Caelli of Chifley is largely confined to her home due to the disabling effects of her progressive MS. Photo: Melissa Adams
Chifley resident Maureen Caelli is the human face of a national report that says many people with multiple sclerosis are battling without essential aids such as wheelchairs.
The report is being published by MS Australia on Monday, the International Day of People with a Disability, to highlight the lack of funding for the sector and to urge the federal government to commit to future funding of the National Disability Insurance Scheme.
The National MS Needs Analysis 2012 is based on a survey of almost 2900 sufferers.
Ms Caelli is largely confined to her home due to her progressive MS but is an artist who paints daily.
"The care of the disabled in Australia is abysmal, it's shocking," she said on Sunday. "Australia does not look after us very well at all."
Recently the number of hours a carer comes to her house each week has been cut.
"More people are being diagnosed and more people are needing care and there's just not enough money to go around," Ms Caelli said.
"Older people in the system like me then have to lose hours to give some hours of care to the new people coming in.
"Australia is in breach of the United Nations charter ... according to the human rights charter, disabled people are not supposed to be disadvantaged, they are supposed to have a lifestyle equivalent to their peers, they're supposed to have enough money to participate within society and to afford housing and power and food.
"Australia is a wealthy country, we should not treat disabled people like second-class citizens."
Ms Caelli held an exhibition of her "super real" paintings in Canberra in winter but says she makes no money from her works.
"I create light and shadow at a higher degree than you see it in nature ... they actually seem to come out of the canvas at you, they're so real, they're more than real."
The national report says nearly one in five Australians with MS struggles to have essential home modifications and equipment, nsuch as wheelchairs, shower rails and ramps.
For nearly half of them, it is due to their lack of funds to purchase or install them.
The survey found wheelchair access to public transport was a significant problem for many people with MS.
"People with the greatest degree of symptom severity experienced the greatest number of unmet environmental needs, including access and affordability of equipment, transportation and assistance with tasks.
"For those participants who had been newly diagnosed, the greatest unmet need was in terms of psychological services, with over 75 per cent of this group expressing feelings of depression and anxiety in relation to their MS."
In the ACT, the situation is not as grim as elsewhere, with generally higher satisfaction levels recorded by the 81 Canberra respondents about access to psychological services, transport and education sessions.