For the second year in a row, the Government has failed to prioritise funding for EB care - Debra Ireland
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For the second year in a row, the Government has failed to prioritise funding for EB care

The Budget was announced on October 11, and we were listening closely to see whether an investment in EB care was included.  

€22.5 billion has been allocated for the public health system in 2024 – this is €916 million less than the health budget for 2023, which the Irish Hospital Consultants’ Association has expressed concern about. 

The Department of Health still has to announce details of where it will prioritise spending in 2024, but here is what we know so far about the social protection and disability measures that may affect people living with or caring for someone with EB: 

  • A €400 cost of living lump sum payment for people getting the Carer’s Support Grant, Disability Allowance and Domiciliary Care Allowance, will be paid in December. 
  • There will be a January cost of living bonus paid to most people who get a weekly social welfare payment including carers and people on disability payments. 
  • The Domiciliary Care Allowance will increase by €10 increasing from €330 to €340 per month with effect from January 2024. 
  • Incapacitated Child Tax Credit will increase for the first time in over 10 years by €200 from €3,300 to €3,500. 
  • There will be €2 million additional funding in Personal Assistant services to promote independent living, delivering around 80,000 additional hours. 

Debra has been calling for the Government to invest €810,000 in mental health support, outreach care, and home care for people living with EB in Budget 2024 – an investment that would make an immediate, positive impact for the approximately 300 people living with EB in Ireland.

While we welcome some of the measures announced in the Budget, such as an increase in the income disregard for Carer’s Allowance and the €400 cost of living lump sum payment for people getting the Carer’s Support Grant and Disability Allowance, this Budget does not go anywhere near far enough in addressing the needs of those living with or caring for someone with EB in Ireland. 

Joanna Joyce, Head of Advocacy and Policy, said “while these measures may relieve some of the immediate pressures on families, many people affected by EB are still struggling to get the level of care they need, such as mental health support, reliable home nursing care and specialist advice. More specialist supports and a dedicated fund for home nursing care are sorely needed to meet the needs of people affected by EB in Ireland. We are extremely disappointed that the Government has not responded to these needs in Budget 2024”.

However, through our Small ask, big impact campaign we have continued to build more and more political support for investment in EB – Sinn Féin and the Social Democrats included investment in EB in their alternative budgets for 2024 and we have now been invited by Deputy Chris Andrews to make a presentation to TDs and Senators in Leinster House on 24th October 2023 to mark EB Awareness Week. 

We couldn’t have done this without our incredible supporters. Thank you again to everyone who has supported our campaign this year– over 1,800 people sent messages to the Minister for Health, Stephen Donnelly, resulting in our meeting request being forwarded by the Minister to the Minister of State for Disability, Anne Rabbitte. We will continue to push for this meeting with Minister Rabbitte to urgently discuss the issues affecting people living with EB in Ireland.

Together, we will continue to shine a spotlight on the struggle many people living with EB face to get basic care and support, and to call loudly and clearly for investment to improve it. 

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