Ms Derval McDonagh:

The Deputy referred to the cost of disability and the additional cost disabled people face. More than a year ago, the Government published its report on the cost of disability. An implementation plan in that regard has yet to be published. People with intellectual disabilities are facing additional costs of between €9,000 and €13,000 per year on various outputs they require to have quality of life. That needs to be addressed as a priority because it is a further marginalisation and inequity. It is leading to all sorts of consequences. The Deputy asked about the consequences in that regard and for real-life stories. We know of a woman named Ann who lives in rural Ireland and has an intellectual disability. She wants to go to college to do a training course but she does not drive and cannot afford a taxi and there is no public transport available to get her to the college. As a result, she has turned down the offer of the course and will remain living below the poverty line. The State is not supporting people or getting the systemic barriers out of their way. Situations such as that facing Ann are happening every day of the week for disabled people. The real-life financial burden people are carrying has to be addressed.

The Deputy referred to the lack of support to families on an individualised basis. I wholeheartedly agree in that regard. Some people with intellectual disabilities wish to stay living within the family home and their families, too, wish to continue with that arrangement. However, there is very little support on an individualised basis available to those persons to make that real and ensure the person has his or her rights met. There is a need to ensure family members do not have to be carers but, rather, can just be a mum, dad, brother or sister. Requiring them to be in a caring role all the time keeps that dynamic going and keeps people in that child zone for the rest of their life whereas, in reality, they are adults who deserve to be independent and have their own life. There needs to be an investment in PA supports, home supports and individualised packages for people to stay in the family home if that is what they choose. There are some people who wish to do that. It goes back to having flexible systems. There is not one thing that suits everybody. Some people want to stay living at home while others wish to move out into a home of their own. There should be a flexible model that can support and enable that. We do not have such a model at the moment, however.

On the advocacy side, the different terms and how they are used can be confusing. Self-advocacy is critical. Ms Coates will speak on the impact that has had on her life. There is a time and place for services such as the National Advocacy Service, such as when a person needs support in respect of particular issues and is trying to navigate the most complex of systems. The health and social care services are incredibly complex. Inclusion Ireland runs an information and support service. People with intellectual disabilities and family members contact us all the time and we regularly direct them to the National Advocacy Service. We appeared before the committee a number of weeks ago with the National Advocacy Service. It stated that it has not received any additional funding since its inception, yet it continues to experience a growth in the number of people it is trying to support. In addition, it is seeing an increase in the complexity of the cases it is being asked to support. It was initially set up to provide support to persons on a particular issue and then move on but when one is supporting a person with an intellectual disability there are multiple and complex issues, such as housing, family or other issues within the health and social care services that need to be navigated over time. There are now waiting lists for the National Advocacy Service for critical issues. The service itself would state that is leading to unacceptable delays in people accessing their rights on an individual basis. That needs to be addressed. Ms Coates, as chair of the Inclusion Ireland self-advocacy committee, will share her views on the different types of advocacy and what that has meant for her.