EDS Awareness Ireland

Public Consultation on the Cost of Disability

Hi folks, please be aware that there is currently a public consultation on a possible Annual Cost of Disability Payment.

The information is hosted on Gov. ie (link below) please read carefully before writing to them.

This consultation is open to EVERYONE (whether you get a disability payment, supports or not.) They would particularly like to hear from disabled people, their families and carers, their representative groups, and Disabled Persons Organisations (DPOs/DPROs). However, it IS open to everyone.

As we all know, certain things are not covered by the weekly disability payment or the medical card and hardly covers the newer basic cost of living, never minding the need of people with disabilities, especially those who can not work to have;

Extra transport and fuel costs for hospital appointments all over the country. (There used to be a helpful payment for this and was stopped for new applicants and never replaced)

Highly restrictive diets where the food costs are very expensive. (There used to be a helpful payment for this and was stopped for new applicants and never replaced, you can keep receipts and claim back 20% for gluten free or diabetes diets through tax on the Med1 form, but if you are not working or not self employed, it’s useless.)

Extra heating.

Extra cleaning supplies for diseases and conditions that may soil clothes or bedding which also means extra electricity for washing and showers.

Extra electricity for plugging in/ charging medical appliances like CPap machines or wheelchairs and their batteries.

Extra medical related things not covered by medical card like plasters, dressings, medical tape, extra aids, splints, supports and devices. Creams, moisturisers and powders for sensitive skin or skin breakdown.

Certain car modifications are not covered and cost a fortune.

Certain conditions are not properly diagnosed, treated or long term cared for here in Ireland and some patients have to go abroad out of their own pockets for treatment and care.

These are just a few things to consider, you may have many more or others to add.

MAKE YOUR VOICES HEARD!!

Public Consultation on the Cost of Disability This website uses cookies to collect information about how you use this site. This information is used to make the website work as well as possible. More details available in our cookie and privacy policies.

For as long as she can remember, Dun Laoghaire woman Ursula Hakman (59) has lived a life marked by debilitating pain. She spent her childhood years in physical agony every time she walked up or down the stairs, and battled recurring gastrointestinal problems all her life.

Her issues were put down to fibromyalgia - but at age 52, she was finally diagnosed with Ehlers-Danlos Syndrome. EDS is an umbrella term for a group of genetic disorders that impact connective tissues that provide support to the skin, tendons, ligaments, blood vessels, internal organs and bones.

'I had a lot more problems later in life. I had skeletal problems, chronic pain developed, chronic fatigue developed, I developed hernias, I had 22 surgeries in my life – not all related to EDS – but I started to have tachycardia too, which is a fast heartbeat,' she says.

'With all of that, nobody really knew what was going on, because it was all different things, sort of at the same time. Sometimes symptoms grow, and sometimes it’s less. But that’s a classic thing for a person with EDS, because it has an effect on the whole body,' she adds.

She talks of the difficulties of managing an invisible condition and the barriers patients face in finding the correct diagnosis and treatments.

Her advice to others is 'don’t give up on searching for the right diagnosis. If you have the feeling there’s more to it, keep going and don’t get disheartened, even by a doctor who dismisses you.'

'Never give up,' she adds, 'try to enjoy and keep going with the good things in life because they will always be there no matter what'