Ms Catherine Cox:

I thank the Chairman, Deputies and Senators for the opportunity to speak to the committee. We were to be joined by Ms Mary Courtney, a family carer, but unfortunately and due to the nature of the caring role, something came up. Her mum is very ill and she was not able to make it here. She was going to be the voice of the carer caring for somebody with autism. I hope Ms Duffy and I will be able to do the issue justice.

FCI is the national charity dedicated to supporting Ireland’s more than 500,000 family carers. As the Chairman said, many of these carers provide support to a person with autism. We acknowledge and welcome the work of this committee. We fully support any effort by the State to improve support for autistic people and their families and allow them to enjoy equal and full participation in education, employment and society. Our view, which other experts who have appeared before the committee have endorsed, is that the best way to achieve this is through a rights-based approach that recognises the significant strengths of autistic people and places their voices and those of their families at the heart of planning and decision-making. We also call for the full implementation of the UN Convention on the Rights of Persons with Disabilities, CPRD, including the ratification of the optional protocol.

Unfortunately, there is no equivalent treaty to articulate or protect the rights of family carers. As such, it is our responsibility in FCI to ensure carers are supported and the immense contribution they make is recognised, valued and included in any future autism strategy. Our contribution will therefore focus mainly on the needs of those caring for a person with autism, while also addressing the needs of the autistic person. These family members and friends who provide this care are most often the autistic person’s greatest advocate and supporter.

In the interests of time, I will focus on the two areas that require immediate attention. The first is realising the constitutional rights of children with autism. Children have a constitutional right to be educated in a place and manner appropriate to their needs. They also have a constitutional right to an assessment of need. Across numerous cases, the High Court has been resolute in its findings, namely, that a lack of resources is no justification for the State to breach its obligations or allow statutory timelines to be ignored. Far too often, children who are referred for early intervention face endless delays, may not get any or all of the services required and recommended or simply age out of services. We all know a failure to provide children with early intervention misses a critical window of opportunity, increases the risk of significant developmental delays and ultimately costs the State far more in the long term. Denying children with autism their right to an assessment of need, education and support is not only an attack on these children but is also detrimental to their family, who are forced to pick up the pieces and fill the many deficits in our broken health and education system, often at significant personal cost. Research by FCI and the College of Psychiatrists published in 2019 shows the enormous physical, mental and psychological impact that caring can have when family carers are left unsupported. This survey of over 1,100 carers found almost half had been diagnosed with mental ill-health, 67% suffered from physical ill-health and 75% worried about their health and well-being.

The failure of the State to meet its constitutional obligations also has significant financial implications and forces many families to pay privately for assessments and interventions they can ill afford. A study by the Vincentian Partnership for Social Justice, which was undertaken before the cost-of-living crisis and published last year, shows a household caring for an adolescent child with a profound disability faces additional costs of €244 per week when compared with a non-caring household. A significant proportion of this cost relates to having to pay privately for services that should be publicly available. As a result, the prevalence of debt and fuel and food poverty is higher among caring households than in the general population.

It is imperative that all children with a disability get the supports they need early and often in the years when it makes the greatest difference. We call on the Government to urgently address the gross inadequacy of children’s disability services by implementing the programme for Government commitment to extend the National Treatment Purchase Fund, NTPF, to secure timely assessment for both child and adult psychological services and to consider a similar extension of the NTPF to include occupational therapy, speech and language therapy and physiotherapy. Surely supporting children with autism to reach their full potential is as important as replacing hips and removing cataracts, which are both routine procedures covered under the NTPF?

On inclusive education, the FCI welcomes the review of the Education for Persons with Special Educational Needs, EPSEN, Act, the reform of the summer programme and the activation of emergency legislation that compels schools to open special classes. These initiatives are long overdue and any benefits deriving from them will ultimately be judged on whether they deliver much-needed change for autistic children and their families. We also stress that opening new school places should not only alone create inclusive education but, rather, must be accompanied by future planning, funding, staff resources, staff training and cultural change to embed educational inclusivity into the new norm.

The second area we wish to speak to is adopting a whole-of-family approach. Living independently is a goal we all share. However, some autistic people, especially those with co-occurring conditions, require the full-time care and support of their family. When a child or adult has autism, it affects the whole family and, in some cases, can put a severe strain on family life. In these situations, it is critical that a whole-of-family approach is taken and supports are in place to enable and sustain family members in their caring role. An essential element of carer support for these families is access to regular and appropriate respite both within and outside the home. For some weeks, we have been hearing on the airwaves about the difficulties in accessing respite for many families. Respite provides relief from the daily demands of caring and allows parents to spend time with their other children, which is critically important. It also allows the person receiving respite to have a break from their family members and home environment, while providing opportunities for socialisation and specialised care. Access to regular respite has also been shown to reduce the need for full-time residential care. It is deeply concerning, therefore, that family carers have no entitlement to respite, which means that many carers care 24-7, 365 days a year without a break. While we acknowledge the efforts of Government to improve respite provision, access to regular respite remains a pipe dream for many families.

At present, we do not have data on the number of respite places available for children or adults. For many years we have called for an audit. This is a significant problem. We are calling for a national audit of respite provision to be undertaken by the HSE. We believe that a national respite register should be established to allow family carers to register their need for respite along with the age and details of the person for whom they care. This would provide a geographical inventory of respite need by age group and condition type. We are also calling for all full-time family carers to be given the right to a minimum of 20 days respite per year, in line with the statutory annual leave afforded to paid employees. You are I are entitled to 20-something days of annual leave per year; a family year is not entitled to a single day off.

Finally, even before Covid-19, it was agreed that a broader discussion was needed on the role of care work, including the rights and needs of family carers, the financial support available, and whether the value of care work to our society requires recognition in the Constitution. The report of the citizens' assembly on care was resolute in this regard expressing a high level of ambition for change in the how family carers are recognised, valued, and supported. It recommends the reform of carer’s allowance including changes to the means-test; increasing the hours carers can work or study outside the home; reimbursing the costs associated with care; increasing respite provision; and providing a dedicated pension for family carers. We welcome the recent announcement of improvements in the State pensions system for long-term carers effective from January 2024, however, Family Carers Ireland urges the Government to be ambitious and reform the carer's allowance scheme towards a payment based on needs not means, along the lines of a participation income for carers, that truly recognises and compensates full-time family carers for their work in the home.

Of particular significance is the assembly’s recommendation to replace Article 41.2 of the Constitution, and An Taoiseach, Deputy Leo Varadkar’s recent announcement that a referendum on care and equality will take place in November. The replacement of Article 41.2 with wording that recognises the societal value of care and obliges the State to take reasonable measures to support care, is a milestone moment and will create an important constitutional affirmation of the public and essential good that care work provides to society and to our State.

I thank the committee again for its invitation to meet its members today and myself and Ms Duffy are happy to take questions now.