'Some days we don’t know how to keep going': Kerry mother's wish list for Budget 2025
Post Supports 'doing Amazing', Physiotherapy Old Her Dennehy Has Pamela Surgery Struggled Says To And Family The Liam Son But 13 Arrange Other Is That Year
When it comes to hoping what the budget will deliver for the disability sector, it is hard to know where to start, said one Kerry mother whose teenage son lives with scoliosis and a rare genetic disorder.
Pamela Dennehy, living in Killarney, said a key change would be improved funding for community services, known as Children’s Disability Network Teams (CDNT).
Her son Liam successfully underwent major spinal surgery in June at CHI at Temple St. While he is “doing amazing”, the family has struggled to arrange physiotherapy and other post-surgery supports.
“It’s a nightmare for everybody,” she said on Friday.
“Forget about the teams, I’m doing it on my own, and some days we don’t know how to keep going. There’s no therapies; it’s absolutely awful.”
She said people think parents of disabled children are just “this worthless person who is whingeing at everybody” as a result.
Ending means-testing of the carers’ allowance would also help, Ms Dennehy said.
This payment varies depending on circumstances, including a weekly payment of €248 for an adult aged under 66 caring for one dependent.
It is means-tested so people may not qualify for the full amount if other supports are also being provided.
Ms Dennehy said an allowance for electricity and other charges such as bins would also help her family and any household where a family member has a disability.
They run “power chairs, power beds, and power hoists” and have the heating on almost constantly to regulate Liam’s temperature, she said.
In education, she is hoping the Government will fund an increase in numbers of special needs assistants as Liam relies on his SNA at school.
The school is eligible for just four SNAs for 400 children even though Liam needs one-to-one supports.
Last October, funding for an additional 1,216 SNAs was announced.
Claire Cahill, co-founder of the Scoliosis Advocacy Network, said these are real concerns for many families.
She also highlighted the cost of having to stay in Dublin for specialised treatment, with accommodation and food costs on top of medical concerns.
“The budget must deliver real support to ease these pressures for families,” she said.