Mr. ?anna Kelly:

A Cathaoirligh agus baill an choiste, Dia dhaoibh agus gur raibh maith agaibh as an gcuireadh labhairt os comhair Thithe an Oireachtais.

Is mise Éanna Ó Ceallaigh, tá mé 13 bliana d’aois agus líofa sa Ghaeilge. Chaill mé mó chos dheas nuair a bhí mé dhá bhliain d’aois ó ghalar meiningítis. Inniu, beidh mé ag labhairt faoi dhínit an duine agus cearta sna seirbhísí poiblí.

My name is Éanna Kelly and I am 13 years old. I lost part of my right leg from meningitis when I was two years old. I am self-advocating for kids with lower limb amputations. I love my language, fairness and equality. I want to speak to the committee about fairness and equality regarding human rights and dignity today.

Following my amputation, the State provided the first leg but after this, I kept getting refused a medical card to allow me to get more legs. My parents were means tested for the medical card and were refused. It took a while before a medical card was given to me based on my condition and then it was only for two years. After two years my parents had to re-apply and go through another means test, only to be refused again. This is a very stressful and intense application process and even the renewal letter asked if my condition had changed.

My experience is that prosthetic legs are built to a budget rather than for comfort or function for a person. The impact is that you are denied parts that are useful or can help the leg function better.

More importantly, the budget means you are only allowed one leg at a time. Kids like me want more than one leg because one does not cover all the activities we want to do. I have to settle on the best “all-rounder” leg to meet most of my needs. The impact of settling is that I am held back. How I compete in sports and how I manage at school and at home is determined by a HSE budget. My choice is taken from me.

I have represented Ireland at European games for amputee football six times now and I see how kids from other countries have legs for sport in addition to their day-to-day walking legs. Ireland is the only country at these games where this is not standard for its kids.

I asked my prosthetists how long it takes to build a leg. They said it takes a week if they continuously work on it, but in reality it takes months. The biggest part of the delay is getting sanction from the HSE. I am growing and changing shape, which often means my leg does not fit me after a few months and my prosthetists are often left to patch up my leg to get a longer life out of it. The impact is often injury. My leg gets cuts and sores, which then leaves me unable to walk, all because the priority is budget over a functioning leg.

My school is not equipped to handle my leg not being useable. There are no crutches or wheelchairs available. This has happened and I am left to crawl on my hands and knees to get about

school. I could hop, but try that with a school bag and busy corridors not to mind the health and safety regulations.

These are my recommendations. First, amputees should not be means-tested for a medical card, ever. Stop asking us if our condition has changed. Second, amputees should be allowed more than one leg at a time depending on needs and function. Some may need an additional leg or parts and some may not. It is individual and depends on the needs of the person at that time. Third, schools should be equipped to manage situations where an amputee student has a leg that is not usable. Fourth, prosthetics should not take so long to be sanctioned. We are not being a burden on a budget. We want to grow to be contributing members of society and pay back more than we take.

When I have a leg I get to walk. I know this is a privilege, as many people cannot get to walk. I have spoken a lot about legs, different types of legs and budgets but I need the committee to realise that attached to the prosthetic is an actual person. This person has freedoms, choices and rights the same as anyone else but this is overlooked in all I have spoken about so far.

Four years ago I was mentioned by name, here, in the Houses of the Oireachtas with regard to these issues and despite intentions there has been no progress. Is everyone who makes policy waiting to see if my condition changes?

Go raibh maith ag an gcoiste as éisteacht liom faoin ábhar seo agus as an gcuireadh labhairt os comhair Thithe an Oireachtais.