Advocacy

These focus groups and consultations heard from our members from Belmullet, Clontarf, Tipperary, Ardee, Galway, Sports, Leader Services and an open online session, and we heard very clearly what life actually looks like right now. The message is consistent: the cost of disability isn’t occasional, it’s constant.

“Everything in my house needs electricity”

One of the strongest themes to emerge is energy.

For many people, electricity and heating aren’t optional; they’re essential to stay well, mobile, and safe. Whether it’s powering equipment, managing pain, or simply keeping warm, cutting back isn’t really an option.

As one participant explained the reality of rising costs:

“You need heat all year round, not just in winter. These aren’t luxury expenses. They are part of daily survival”

Transport is another major pressure, and one that often goes unnoticed.

Many people rely on taxis or adapted vehicles because public transport simply isn’t accessible or doesn’t meet real-life needs. That means paying significantly more just to get to work, appointments, or social activities.

As one person said, “Free travel is no good if you can’t actually get there.”

For younger people trying to build independence, these costs are particularly frustrating. One participant shared: “I could be paying €30 to go home… I remember doing the same journey for about €12.”

That gap between what things cost and what people can afford is where independence starts to slip away.

“By Sunday, I’m broke”

What really stands out across all the discussions is how these costs add up.

It’s not just one bill or one expense, it’s everything, all the time. People spoke about living week to week, constantly calculating what they can afford.

One participant described it simply: “Come Sunday, I’m broke… I have nothing left.”

Others talked about using credit cards or borrowing from family just to get by. That creates a cycle, not just of debt, but of stress.

And it’s not just financial. These pressures affect mental health, confidence, and connection to the community. People spoke about cutting back on social activities, staying home more, and feeling increasingly isolated.

For some, even taking up a job feels risky. The fear of losing supports or ending up worse off is very real. One young person summed it up: “I’d be scared of my life to take a job… I’d rather not get the job than lose my benefits.”

That’s not a system that supports participation. It’s one that quietly discourages it.

“It would just help us live.”

Across all of these conversations, there was one clear point of agreement and that is current supports don’t match the real cost of disability.

People aren’t asking for extras or luxuries. They’re asking for recognition and a bit of breathing space. As one participant said, “It would just help us live.”

1. Introduce a Cost of Disability Payment that is real and permanent. It must be a weekly, non-means-tested payment, paid alongside existing supports, not replacing them.
2. Recognise energy, transport and food as core disability costs. These are not lifestyle choices. They are essential, ongoing needs that must be built into policy design.
3. Make the payment safe to keep if you work. People should not be afraid to take up employment. The payment must be retained in employment to support participation. A tax credit equal to the weekly payment needs to be introduced.
4. Include people over 65 with disabilities. Disability-related costs do not stop at retirement. The system must reflect the reality of ageing with a disability.
5. Reduce bureaucracy (red tape) and repeated assessments. For lifelong conditions, a doctor’s letter should be enough. Systems must move from suspicion to trust.
6. Recognise independence and participation as outcomes. This is not just about bills; it’s about being able to leave the house, take part, and live a full life.

You can read our full Cost of Disability Government Submission here.