Ms Samantha Kenny:

On the question of well-being, as a parent, you spend your entire life empowering and building confidence in your child so that, we hope, the child will turn into an adult who will be empowered and confident in going out into the world and living his or her life. Now imagine being that parent, who has spent all that energy and put all that work in with a child, only to have to go to an agency and rip that child apart just to get a service. That is what we have to do. We spend all our time telling our children how they are able to do this and they just need to find a different way but to access a service, one has to list every single thing that society sees as wrong with one's child. That is a very hard task. The well-being of the family is massively affected.

There is the question of trying to future-proof. I have a 16-year-old who came to me at 14 years of age and told me not to worry about what will happen to his sister when I die because he will take care of her. He was 14 at the time he said that. That came from nowhere because he overheard a conversation where we were trying to work out guardianship should anything happen to me and my husband. We need to look at guardianship because we do not want our daughter to end up in residential care. We bought a house intended for her and it is the house she should live in. He overheard a conversation where we were trying to work out guardianship so at 14 years of age, he came in to me and stated "you do not need to worry about my sister because if anything happens to you and Dad, I will take care of her.". A 14-year-old should never have to utter those words.

This affects the whole family. He also told me not to worry about his two brothers because he will keep an eye on them as well, although they are fairly independent. I am very lucky to have the children I have. We do much work in our house on mental and emotional well-being because the system destroys us. We fill in reams of paperwork where we literally write down everything that is wrong with our child. We have to prove everything that has been written so we must take our child to these services and hope the child is having a bad day, because if she is not, we might not get the service. There is added stress involved in keeping the service and hoping the child does not improve too much, which could lead to a loss of the services. Imagine hoping your child does not improve too much so you can keep care services. It is a horrible position and no parent wants to be in it. No parent wants to be constantly thinking about every weak chink in the armour that is being built for a child but it is what we must do constantly, day after day.

What makes it even worse is there are no specialised mental health services for our family. Any therapist services or counselling I have done came through word of mouth from somebody who had experience with this and would have known how to handle my situation. This is so I do not find myself in a room with somebody who is so shocked by what I am saying they are unable to support me. There are no sibling counselling services so my oldest child has not availed of any mental health counselling services. There is none for him.

To get counselling services outside the private system, one must jump through the current hoops. A medical card holder gets six free sessions and must wait for them. It is a six-month wait to access those sessions. After those six free sessions, one must wait another year to access six free sessions. There are no dedicated mental health services for families like ours. I may sound ungrateful but in our position, six free sessions do not even scratch the surface. We cannot do enough work in six free sessions to ensure everything is okay. Mental health services must be looked at in conjunction with disability services.

Many reports have been published on this. Family carers, caregivers and people with disabilities all suffer with their mental health simply because they constantly have to fight to access services. Even if we fix the services, there is a group of people who have been traumatised by having to fight for those services and prove they are worthy of them. Imagine having to prove you are worthy enough to access basic care. It is what we have to do. We must prove we are worthy enough to access basic care.

That is my perspective on our well-being or how we are trying to manage our well-being. I hope it helps to answer the question.