Dáil debates

Tuesday, 2 April 2019

Autism Support Services: Motion [Private Members]

 

7:35 pm

Photo of Kathleen FunchionKathleen Funchion (Carlow-Kilkenny, Sinn Fein) | Oireachtas source

I move:

That Dáil Éireann:acknowledges that:
— autism is a 'spectrum' condition that affects the typical development of the brain in areas such as social interaction, communication and sensory processing;

— the first signs of autism usually appear as developmental delays before the age of three, and the symptoms and characteristics can present themselves in a wide variety of combinations which can range from mild to severe, yet it displays no outward physical signs;

— while many people, females as well as males, are diagnosed at a young age, others may not have their autism recognised until a later age;

— many older autistic adults have never received a diagnosis or any support or assistance from the State;

— the cause of autism is unknown, but, it is generally accepted that autism is caused by differences in brain development;

— in most cases a parent will notice a difference in their child’s language, behaviour or social development, and the family General Practitioner or Public Health Nurse can then refer the child to a paediatrician who can assess the child’s developmental delay and ultimately a diagnosis can be applied;

— many of the barriers autistic people face come from how society responds to those with the condition, and unemployment, social exclusion and many mental health challenges arise, not from autism, but from a lack of understanding, support and accessibility; and

— autistic people, with the right support, can participate meaningfully and make a valuable contribution to society due to a different way of seeing and understanding the world;
agrees that:
— one in every 65 school pupils or 1.5 per cent of the schools population has a diagnosis of autism, meaning approximately 14,000 students with autism are in the school system, and this number is significantly higher than the previously estimated number of one in every 100 students;

— Ireland still awaits an Autism Bill and an Autism Strategy despite an initial Autism Bill being introduced to Dáil Éireann in 2012, and lapsing in 2014 along with a subsequent Autism Bill from Seanad Éireann awaiting its second stage in the Dáil since July 2017;

— autism is recognised to be a heterogeneous group of conditions and consequently there are large variations in individual profiles, and service delivery needs to take account of both the heterogeneity within the spectrum and of the lifelong nature of the condition, and recognise that needs change with age;

— early diagnosis and appropriate supports are key and ensure that people are enabled to develop strategies that make life easier rather than more difficult for themselves and for those with whom they live, and that early intervention aims to develop skills in the core areas of communication, social interaction and imagination that underpin adaptive functioning in order to provide the person with the highest possible quality of life;

— Autism Spectrum Conditions services should ensure individuals will receive their health services as close to their home as possible;

— services should be delivered using a multi-disciplinary model, including:
— Primary Care Teams;

— specialist Disability or Child and Adolescent Mental Health Services; and

— subspecialist autism specific services at health and social care network level;
— the current range of services are not available consistently across areas and are not accessible to everyone on the spectrum;

— greater multi-agency co-ordination is required to provide clear pathways for individuals and their families;

— autism supports and care are required throughout the whole of one’s life-cycle and should be provided on the basis of individual needs;

— autistic people do not just need clinical supports but also employment opportunities, access to quality advice when making critical life decisions, social opportunities and autism-friendly public services; and

— more must be done to create an accepting society which celebrates autistic people for who they are; and
calls for:
— an all-party Oireachtas Committee on Autism to be set up in the immediate-term;

— this Committee to be tasked with developing and publishing a comprehensive Autism Empowerment Strategy (AES) within a six-month-period of its establishment;

— the Committee to be mandated to hear directly from autistic people and their families;

— the Minister for Health, Simon Harris T.D., to publish the findings of the review of operational effectiveness of existing health services’ responses in addressing the particular needs of those with Autism Spectrum Disorder, which was to be published in September 2017, in advance of the all-party Oireachtas Committee being set up;

— legislation to be drafted and introduced to compliment and underpin the publishing of an AES and to give this strategy a statutory footing;

— the establishment of a multi-disciplinary task force, including autistic individuals and/or their family members, to oversee the rollout of an AES and monitor legislative oversight;

— a review of the National Council for Special Education policy with regard to provision of Autism classes at primary and post-primary level;

— a consultation with disability groups and educational stakeholders on the full implementation of the Education for Persons with Special Educational Needs Act 2004, with a view to full implementation, to be undertaken at the earliest opportunity;

— an urgent review of supports available for autistic adults throughout their life-cycle; and
— an all-island approach to be attributed to the development of any strategy, noting the positive work that the Middletown Centre for Autism has contributed to autism services since its establishment in 2007, as a body funded by institutions both North and South of the Irish Border.

I am delighted to introduce the motion to the Dáil this evening for debate. It is particularly poignant and appropriate as it is World Autism Awareness Day. I warmly welcome all of our guests in the Gallery who have made such a special effort to be here. Their being here late on Tuesday night is a testament to who they are and to their strength and conviction in fighting for the rights of their children, their family members, their students and their members. We send warmest wishes to the parents here this evening as well as to all the parents watching the debate from home via the live link. I acknowledge their involvement and the part they have played in getting the motion to the Dáil floor. Their tireless work, first-hand experiences, wealth of knowledge and struggles have informed our work and everything we do. As a mother, I commend them for their stamina and courage. To our stakeholders, I thank them for their campaigning, lobbying and perseverance. Their expertise is invaluable in informing and educating all of us as public representatives.

The motion we have tabled sets out a clear framework towards finally delivering an autism empowerment strategy for Ireland. We call for the establishment of an all-party Oireachtas committee to be mandated to produce an autism empowerment strategy within six months. Critically, this would be in direct conjunction with the various advocacy groups, parents and artistic individuals. We need all-party buy-in for this to work. Should the motion pass, the next critical and urgent step is to work together to establish the committee.

As our party spokesperson for education there are a few key points I would like to make in my contribution. The equal right to education for all children is not being upheld at present by the State and the Government. We know that under the Education Act 1998 schools are under statutory obligation to provide education to students appropriate to their abilities and needs. The failure to make diagnoses in adequate time for school applications and the lack of autism spectrum disorder, ASD, classes and available places for autistic children is a denial of a child's right to education. These factors create a two-tier system in our education system.

I am positive that all Deputies will have encountered parents concerned about the wait for diagnosis for their child, or that their child has yet to receive a place in primary or secondary school or, indeed, that their child has been asked to leave a school as a result of the child's needs not having been met. We need a review of the method by which the Department of Education and Skills and the National Council for Special Education, NCSE, process the establishment of autism spectrum disorder classes in schools and how these classes are staffed. We need to get to the bottom of why so many autistic children are not in school. We need to find solutions to the barriers facing autistic children gaining places in schools and address the fundamental issues as to why schools are reluctant to open autism spectrum disorder classes. Until we are honest and open about all of these influencing factors and take action these problems will simply compound year on year.

Our schools must be resourced adequately to provide equally for all children who attend, with or without additional needs. All schools need to acknowledge that diagnostic rates are increasing among our population and we must deliver for that changing demographic. Teachers must be supported through this process. Schools cannot simply state they will not open an autism spectrum disorder class without justification when there is clear evidence of need. If a parent feels his or her child needs additional supports, and that child has been diagnosed to verify this, that parent must be heard.

We also need to address the issue of social stigma. We must be cognisant that the potential to institutionalise, intentionally or not, remains a reality and this must be acknowledged in our schools. A child with additional needs is as entitled to an education and equal opportunities as any other child, to become a fully participating citizen with access to education and employment should he or she wish. Families and parents must be supported in their efforts to achieve this. Of course, there are many varying points on the autism spectrum and a situation that may be accepted by one child without problems might be found completely overwhelming or challenging by another. This is why individual education plans are crucial to a child's development and progress in a school.

In the motion we call for consultation with disability groups and educational stakeholders on the full implementation of the EPSEN Act 2004, which would be undertaken at the earliest opportunity. Second level students with additional needs throughout the State are being denied access to particular subjects on a teacher's evaluation of his or her readiness for that subject. Parents have told me this happens regularly and they are denied input. School boards of management need to step up to the plate and request the relevant supports from the Department of Education and Skills, and the NCSE where needed, so teachers feel supported in this situation. It is pointless to advocate policies on inclusiveness unless these policies are implemented and monitored in a standardised and consistent way.

We have come a long way from the dark days of the immediate institutionalisation of anyone deemed different, or any woman or child who did not fit in the accepted social norms. If we are to learn anything from that dark part of our past it should be that all of our citizens should be cherished equally. This right must begin at birth and carry throughout every child's journey in our education system. If our shared hope is that we grow as a compassionate and tolerant society we must practice what we preach and work to ensure every child has a place in a school in his or her local community. This is not an issue for parents to fight alone. It is the responsibility of all of us. If we have failed even one child then we have failed, and I urge all Deputies to vote in favour of the motion.

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