Wexford carer shares heartbreaking realities for carers

A Wexford carer and campaigner for family carers is calling for several key measures to support carers in the upcoming general election

In an interview on todays morning mix, Jane Johnston, a campaigner and a carer herself, highlighted several key issues facing carers as the upcoming general election approaches. She outlined what she believes needs to be done to support carers and improve their situation: Abolishing the Means Test for Carers’ Allowance: Jane emphasized the need to abolish the means test for the Carers’ Allowance, which is currently €248 per week. She pointed out the discrepancy between this amount and the pandemic unemployment payment (PUP), which was higher, and argued that carers should not be expected to live on less than what was considered a minimum for others during the pandemic. She urged political parties to commit to this change. Increase in Family Carers’ Payment: Jane welcomed the proposal from some political parties to introduce a family carers payment of €325 per week. Nearly 70% of family carers report struggling to make ends meet, and Jane stressed the importance of recognizing the financial strain carers face, especially since many are already living busy and challenging lives. Long-Term Planning for People with Disabilities: Jane, who cares for a family member with intellectual disabilities and autism, called for long-term planning for people with disabilities. She argued that planning should go beyond the term of a single government, and that there should be a lifespan approach to care. This includes access to therapies (which many carers are forced to pay for privately) and ensuring that people with disabilities are supported throughout their lives, not just during childhood. Fears for the Future: Jane shared the heartbreaking concern many parents have about what will happen to their children with disabilities when they are no longer able to care for them. She mentioned that many carers worry about the future, with some even saying they hope their children die before they do because of the lack of support and planning for their loved ones' futures. The Importance of Carers: Jane stressed that family carers are the backbone of care for vulnerable individuals, and that while services provide support, it is the carer who is the central figure in providing day-to-day care. She called for a more holistic approach to planning for a person’s entire life, from childhood through adulthood and into old age. Improvements and Challenges in 2024: Reflecting on 2024, Jane acknowledged the positive conversations that have been sparked, particularly around the referendum on care, even though it did not pass. She noted that the conversation about caring in Ireland is more prominent, but she also pointed out that real, tangible changes have yet to be seen. Carers continue to need better support, particularly in the form of services like respite care and residential care, which are still lacking across the country. In conclusion, while there has been progress in raising awareness and starting conversations around care, Jane emphasized that these discussions must lead to real action, with increased funding and better services for carers and the people they care for.