Ms Jane Johnstone:

I thank the Chairman and members for the opportunity to speak to the committee regarding public awareness of living with a disability. As a mum and carer to my two adult sons, Evan and Daniel, who both have complex disabilities, and an employee of Family Carers Ireland, I thank members for including the perspective of family carers in their discussion this morning.

Family carers and those they care for live on the outskirts of society, yet society remains dependent on family carers to care for our most vulnerable citizens, which we do with love but also with a deep longing to be part of the bigger picture. We believe that our inclusion and a greater public understanding of our respective positions would deeply enrich society at large. I know I have learned more from my sons than they have learned from me and I honestly believe they have made me a better person and can make us a better society. If it takes a village to raise a child, then it takes a society to include our most vulnerable people and the people who care for them.

I highlight the growing narrative with regard to the role of family carers, and the suggestion that they can in some way disempower people with disabilities or obstruct their autonomy, as well as an emerging aversion to the term "carer", which is perceived to be based on unequal relationships characterised by emotion and dependency. Carers and carer advocates want our loved ones and people with a disability to live full and equal lives. In many cases, however, including the case of my boys, the reality is that the person with a disability needs the support of a family member or friend in order to achieve this. My sons need me to dress, wash and feed them, arrange their care, manage their personal budget, etc. If I did not do those things for my boys, they simply could not do it for themselves. We must accept, therefore, that for many people with a disability, a family carer like me not only walks this journey with them but is crucial to their

participation and inclusion in society.

It has been our experience that it is not the disability itself which denies or limits full societal participation but, rather, it is the barriers that exist across society which prohibit us from social inclusion. While it is acknowledged that people with disabilities are recognised as having the right to equal opportunities and to participate in society, the barriers that impede inclusion remain. The absence of lifespan planning for persons with a disability means they and their families have a lifelong and difficult road to travel to attain even the most basic level of inclusion. We hear at first-hand from the families of children with a disability about the uphill battles they face every day. They face battles to get an appropriate school place or accessible school transport, the aids and appliances their child needs or an assessment of need. They then face further battles to get the support and services the assessment shows they need. They face battles for respite, to be put on a waiting list for essential therapies and to eventually be seen. We hear from families of adults with disabilities that the battle continues for adult day services, adult respite and, ultimately, residential care and housing. Too often, we hear from older family carers that they just do not know if they have the energy for yet another battle. Saddest of all, many hope their child will die before they do. Although they love the persons they care for intensely, their biggest worry is what will happen to them when they are no longer here to battle for them.

Described as ground-breaking legislation, the signing into law of the Assisted Decision-Making (Capacity) Act 2015 some seven years ago was a significant milestone in Irish legal history. It recognised that, as far as possible, all persons have the right to live a life of their choosing and play an active role in decisions about their personal welfare, property and affairs. While the Act is rightfully focused on people with diminished capacity or those whose capacity may be called into question in the future - referred to in the Act as the "relevant person" - there are many other relevant people who are critical to the Act and to ensuring its principles are respected and implemented. Perhaps most important of these are the family members and friends who care for a person due to illness, frailty, disability, a mental health difficulty or addiction and who are the most likely person to bring the legislation to life by assuming the role of decision supporter or intervenor.

The successful implementation of the Act is predicated on their willingness and ability to assume the various decision support roles legislated for and, as such, every effort should be made to consider their needs as we move towards full commencement of the Act. Of particular concern are issues relating to the general data protection regulation, GDPR, and transition times for carers for people with profound disability to become decision-making representatives, DMRs, through the court system. Neither of those issues has been fully acknowledged or addressed . Most distressing of all is the official response that Evan’s situation is inconsistent with the assisted decision-making legislation.

People with disabilities and family carers who have consistently challenged both societal and State systems have been the driving force towards the cultural shift required to become a more equal and inclusive society. As a mum and carer for more than two decades, my ultimate driving force and goal, just like that of the other 500,000 family carers in Ireland, is the preference and will of our cared-for people with disabilities along with their happiness and optimum participation in society.

My eldest son, Evan, is 22 years old. He has a diagnosis of profound autistic spectrum disorder, ASD, and profound intellectual disability, along with many underlying health conditions. Standing 6 ft 4 in. tall, he is completely non-verbal. I have loved and cared for my sons Evan and Daniel every day since birth, and as a lone parent since being widowed in 2014. I have regularly challenged the systems on their behalf while all the time knowing that no challenge will ever be our last. Due to the extensive nature of Evan's disability, he is unable to lobby for his right to inclusion or to make decisions that represent his best interest and safety. We must always respect the will and preferences of the person with a disability. I strongly believe that the person who is best informed to make such decisions when the person lacks capacity to do so themselves is the person who has cared for him or her throughout his or her life. I will apply to be Evan’s DMR through the Circuit Court but I am saddened that mothers and fathers in Ireland who are family carers must stand before a judge in the hope that they can continue to do what is best for the people they love. Where are my rights as my son's mother and family carer?

In conclusion, the social, cultural, political and legal elements, along with the level of public awareness in respect of equal inclusion for people with disabilities and their family carers, could also be described as truth, knowledge and power. We know the truth, we have the knowledge and we have the power to make it better for us all. Change is dependent upon will, and we must form a collective will so that we can truly begin to move towards a fairer and more inclusive society. I thank the committee for inviting us to speak on these issues. My colleague, Ms Cox, and I will take any questions members may have.