Julie Helen: 'Many disabled people are having to decide whether to eat or heat their homes..it is not good enough'

My mind is bursting with information and statistics around what it costs to have a disability in Ireland.

I was just making a short video to support a campaign by the Disability Federation of Ireland (DFI) and the Irish Wheelchair Association (IWA) for an Emergency Winter Payment of €400 for disabled people.

There had been payments supporting energy costs as part of the cost-of-living measures that the government had in place for the last few years, until it was decided it didn’t make fiscal sense to have one-off payments anymore.

The Emergency Winter Payment would support disabled people across the country who are unable to work and depend on social protection measures. Many disabled people this year are having to decide whether to heat their homes effectively or eat properly, and frankly that is just not good enough.

I live in a new home, and we have a fantastic heating system. We know that the temperature in our rooms stays at 20 degrees celsius. When many people come into our kitchen, they comment on how warm it is, and I can still be in a jumper at that temperatur,e and so can David. Cold on our tight muscles translates to pain. We can prioritise heat, but we undoubtedly see it in our electricity bills.

I cannot imagine the worry if we couldn’t afford to be warm enough, so I want to get behind anyone who endures more pain than necessary or has to run medical equipment or choose more expensive convenience foods to be able to manage independently.

There is weight in those decisions, and it is time there was immediate help as well as long-term measures put in place so disabled people can live comfortably.

In 2021, the government published Indecon: The Cost of Disability in Ireland Research Report. It was going to be ground-breaking because it acknowledged the extra costs for disabled people for things like additional living expenses, mobility, transport, and communications, care and assistance services, equipment, aids and appliances, and medicines, which can add up to between €10,000 and over €15,000 per individual per year.

There are two disabled people in our house, so even at the lower end, that is an additional cost of €20,000 for our household.

Those costs need to come out of the disposable income portion of money earned, and the Disability Federation of Ireland tells us each disabled person needs 41% more disposable income just to get by while managing our disabilities.

The truth is nobody has that kind of money. I would never expect the government to pick up the tab for the total cost of disability, but a little help could make a big difference.

The cost of disability doesn’t change when we can work, but it is harder to meet for those who can’t work through no fault of their own.

The government has just launched a consultation on the Cost of Disability. I urge all people who feel strongly about the cost of disability to contribute to the consultation and send a clear message - what we need is the emergency winter payment to be paid this year, and a long-term, non-means-tested cost of disability payment for disabled people.

A cost of disability payment was promised for 2027, but some disabled people are really struggling now.

There will be a protest in the Garden of Remembrance in Dublin, this Saturday, February 28 at 12.30pm, with the DFI and the IWA, to ask the government to pay the emergency winter payment and to remind them we need action now on the cost of disability.

See: https://www.disability-federation.ie/ for more information.