Ms Sandra Porter:

I would just like to add some detail on working and living with a neurodegenerative disease. We submitted some recommendations to the Green Paper. One was to highlight the structural barriers and lack of in-house supports for people living with a neurodegenerative disease. The majority of people living with Huntington's disease will leave work with undiagnosed symptoms. If there were in-house supports, a person with a neurodegenerative disease would ideally reduce their hours and stay in work for as long as is possible. There should be a support on the model of the working family payment where the reduction in hours would not result in a cliff edge as regards income. The person would go from full to partial financial independence before becoming dependent on support payments. This would help psychologically and with family life.