The first ever meeting of the new National Council of Family Carers was held in Dublin today.
Family Carers Ireland hopes this forum will mean that carers' voices can help to shape the policy and services that affect them.
The meeting involved discussions on key issues impacting family carers including home support and waiting lists, with access to much-needed respite proving to be a key concern.
"This is the first time we have a system where carers are communicating with carers and we kind of get into the grass-roots," explains the President of the new council Johanne Powell.
She says the Council has a direct line to the Board of Family Carers Ireland and it has also held regional assemblies to make sure that voices from every part of the country are heard: "We had 17 local assemblies from Limerick, Clare, Wexford, Waterford, Wicklow, South Dublin and North Dublin. There were five issues we concentrated on, but the main one, by a big mile is respite. That is a big one. We alos have problems with home support."
Johanne knows the path many carers face in their struggle for support, having cared for her daughter Siobhán for 36 years, until her death five years ago.
"Siobhán was born with very severe disabilities, she was very small. She couldn't walk, she couldn't talk, she couldn't feed herself but she had a great personality. She was absolutely wonderful at communicating with people. I don't know how she did it, but she did."
She said her daughter had had a happy life and "I got such a lot of help from Family Carers Ireland and other carers that now, when I have a bit more spare time, I'd like to give a little bit back because I know the struggle it has been for everybody."
She said carers were campaigning for fairness and not a pat on the back.
She is orginally from Norway where she has a niece and a nephew with disabilities. "They have got great support from when they were little. They have a personal assistant. They are taken on holidays. They have regular respite and they are both living independently now in houses," she says. "But we've got nothing, thats the truth of it. I didn't chose to be a carer... I have no patience. My husband was great at it but he was away at work, and I had to do it. There was no choice."
Family Carers Ireland says whilst Budget 2026 saw the income disregards for Carers Allowance raised considerably from next July, carers still want the full abolition of means testing for such supports.
This was promised in the General Election and there is wording in the Programme for Government, but she says the commmitment is on a phased basis, over the lifetime of this government.
"It does mean thousands more families and family carers will be able to access Carers Allowance. That payement however is just €260 per week at the moment. It goes to €270 in July next year, but we know the cost of caring is far more."
Family Carers Ireland say collectively there are 500,000 carers across the country saving the State €20 billion euro each year.
"Yet their work is not truly valued. They're not recoginised and unfortunately they're not supported."
Barbara Kovach travelled from Clonmel in Tipperary for today's meeting, where she raised concerns about the transition from Child to Adult disability services for her 24-year-old Liam who has Down Syndrome.
"I found it very difficult at the beginning. Liam transitioned from a school into day services when he turned 18 in 2019, and transportation was one of the major issues. Plus services like speech and language and all of those kind of therapies seem to have been non-existent."
She said she had to fight for her son to get access to those services during his day service: "Because we could see Liam deteriorating and kind of reverting back, and he was losing what little language that he did have."
She says the services where she is in Co Tipperary are "like a lottery... and it seems to be a constant fight to get any type of service for people that have a special need".
She says she is hopeful her voice will be heard through this new National Council which will meet two to three times a year, with more local assemblies meeting around six times a year to discuss issues.
Catherine Cox says she hopes it will give carers a strong, united and continuous voice.
"It is the first structure of its kind in Ireland and will ensure that carers' lived experiences guide not just Family Carers Ireland but also how Government and services respond to their needs," she said.
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