Ms Sandra Porter:

I welcome a solution about the alignment around the invalidity pension and the disability allowance, as Deputy Ó Cuív mentioned. In my work supporting individuals and families living with Huntington's disease, the criteria for the invalidity pension means that people have to be not working for one year or have a diagnosis. People living with Huntington's disease may have worked for many years and by the time they may decide, or have accepted their condition, many years may have passed. They are unaware that they are entitled to an invalidity pension. It is possible to make a late claim.

We know of a number of families who have a late claim application in, but we do not have an outcome on any of those claims yet.

On the self-employed, for example, someone living with Huntington's disease who is self-employed will possibly not access disability allowance because his or her spouse or partner is working full time. Such an individual is not eligible for any other payment and has to wait a year to look for the invalidity pension. There is a language around invalidity pension. People on disability allowance can work; it is not the end. Invalidity pension sounds like the end of someone's working life. People can go to partial capacity benefit but it is very hard to accept. Although families need that support, the individual has to accept it. We definitely welcome aligning invalidity allowance with disability allowance as regards how to access it.

A self-employed person caring for a spouse or partner is assessed on the previous tax year. A lot can happen in a year. That person might be working less in the current year and if somebody is working less, he or she is earning less. As regards means-testing, in order to keep up to date with a self-employed person's working hours, a periodic review of the means test is needed. That is not happening. It is also administrative.