Ms Sandra Porter:

I would like to address the cost of disability. The Indecon report Cost of Disability in Ireland estimated a cost of €16,284 for people with severe limiting diseases such as Huntington’s disease. There are obvious costs and there are also unseen costs. Due to the lack of access to the transport access scheme since 2013, those families who can afford to pay have a huge outlay. With regard to the cost of accessible housing, an adaptation grant of €30,000 will just not do anything. Since weight loss is associated with Huntington’s disease, the costs of necessary additional food and supplements must be met. Given the position on the adaptation of cars, immobility and the difficulty travelling on public transport, having to rely on taxis entails a cost. We have touched on energy poverty. People living with Huntington’s disease face increased heating costs due to changes in temperature regulation.

To touch on the difference between gross figures and net figures, there are the issues of the lack of access to the fuel allowance and huge energy bills. The unseen costs are the costs of incontinence, laundry and waste disposal by weight. There is also the cost of medication, even with the medical card. A generic version of a product may not be suitable. A huge outlay relates to the cost of multidisciplinary care where it is not automatically available and is impacted upon due to unfilled posts and, in turn, long waiting lists. The families who can will go private. If people could claim back expenses related to physiotherapy, occupational therapy, dietary care, psychiatric care and counselling, it would be very welcome.

The application process is incredibly arduous and difficult. According to the social services annual report for 2022 and the appeals office annual report for 2022, approximately 56% of disability allowance applications were refused on first application, so we first support somebody to make this application only for them to then be refused, and approximately 58% of disability allowance applications were granted in whole, in part or revised on appeal. What about the people who did not actually get to the appeals process section? In my work, we have families who will-----