“That Dáil Éireann:
— the special interests and strengths of people with autism are a vital part of our society and we lose out when their unique insight, experience and contribution is lost, and that they require and deserve inclusion, equality and accountability;
— for people with autism and their families, the delays, cancellations and curtailments in healthcare, education and other public services caused by the Covid-19 pandemic have made what was already a poor situation considerably worse, and that as a result they are in a uniquely isolated and vulnerable position; and
— this isolation has been reinforced by the discovery that the State, through the Department of Health, has surreptitiously compiled dossiers of sensitive personal information, from medical and other healthcare and educational sources, on children with autism, a practice that this Dáil should condemn, and the publication of an internal review into this matter will do nothing to restore confidence as it lacks the independence and transparency so urgently required;
— the long-standing adversarial approach taken by the State, when services which children are entitled to, or urgently need access to, are absent or failing, has put major strain on families and carers, and destroyed the trust of many in the State;
— early diagnosis and intervention for children with autism is critically important, but waiting times for both assessments and services have always been bad, and are now intolerable;
— in a recent reply to a parliamentary question, the Health Service Executive confirmed an average 19-month waiting time for a child’s assessment of needs, with 5,078 assessment of need applications overdue for completion, which is in contravention of the legal requirements under the Disability Act 2005, where it is set out that assessments for children with additional needs, such as autism, should be commenced within three months and completed within six months;
— less than 10 per cent of assessments of need are being carried out within the statutory time-frame, and this is in contravention of the Government’s own National Autism Plan which promotes timely access to diagnostic assessment, and which is indicative of the Government’s abject failure to support families of children with autism;
— due to Ireland’s two-tier health service, families from more disadvantaged backgrounds, or without the financial resources, cannot access timely intervention, which is leading to increased levels of stress and difficulties for families of children with autism;
— many provisions within the Education for Persons with Special Educational Needs Act 2004 remain to be commenced;
— €63,000 a day, or €11.6 million a year, is spent transporting children with autism and those with special needs in south Dublin to schools in other parts of the city, due to a failure to provide appropriate places locally; and
— a study by Dublin City University academics in August 2020, showed that as a result of Covid-19 restrictions, a decline was reported for 61 per cent of children with autism, with parents noting:
— a decline in their child’s ability to self-regulate emotions in the case of 34 per cent of children;
— a decline in motivation to engage in activities, including school work, in the case of 18 per cent of children; and
— a decline in academic skills such as maths, reading and writing, in the case of 14 per cent of children; and
calls on the Government to:
— commission a fully independent review, by a body other than the Department of Health, into the Department of Health’s practice of surreptitiously compiling dossiers of sensitive personal information, from medical and other healthcare and educational sources, on children with autism;
— introduce a new national autism empowerment strategy, which would take a rights-based approach to the inclusion and acceptance of people with autism in Irish life, that recognises the significant strengths of people with autism and places their voices, and those of their families, at the heart of the planning and decision making process, is underpinned by a budget and by draft legislation, and for the strategy to be published and submitted for the approval of both Houses of the Oireachtas by the end of July, and that the strategy should include:
— direct involvement in its development from people with autism and their families, through the establishment of a working group and direct consultation with the community;
— learning from best practice abroad, such as Malta’s Persons within the Autism Spectrum (Empowerment) Act 2016, and to lay out the establishment of an Irish autism advisory council, similar to the Maltese Autism Advisory Council, to advise and guide Government on autism strategy and which holds Government to account;
— the immediate abandonment of the new standard operating procedures for assessment of need under the Disability Act 2005, which have reduced assessments of children to a meaningless box-ticking exercise, and to put in its place a system for professional, multidisciplinary, in-depth assessments of need that will provide both a detailed description of a child’s needs as well as setting out proposals for tailored, specific and evidence-based intervention;
— urgent action to address waiting lists for assessments of needs, occupational therapy, speech and language, audiology and other areas of concern, with the immediate recruitment of additional therapists to ensure early intervention;
— a best practice model of service delivery, assessment, diagnosis and intervention for service users with autism, drawing on international expertise, with guidance for health service providers on how to meet the needs of both children and adults with autism, and their families and carers;
— a clear and detailed intervention plan, funded and time-bound, on support services for families and carers, and a fully established roadmap on how family support services are to be developed;
— appropriate amendments to the definition of disability in equality legislation, so as to include specific reference to autism and other developmental issues that affect a person’s capacity to take part in social interactions or to form social relationships, and to incorporate a rights-based, child-centred and inclusive approach;
— a sustained autism inclusiveness campaign and the provision of autism inclusion procedures and real engagement, including training for all professionals who frequently deal with adults with autism;
— appropriate regulation of autism services and therapies and recommendations on appropriate action to be taken in relation to therapies which are not medically, or evidence based, make false claims or are dangerous to the welfare of people with autism;
— the inclusion of a question on autism in the next national census to determine the number of people with autism in the State;
— the implementation of the recommendations of the report entitled ‘Unmet Needs - A report by the Ombudsman for Children’s Office on the challenges faced by children in Ireland who require an assessment of their needs’, including and not limited to:
— additional resources, including a refund element for private assessment to get to grips with the significant waiting lists;
— changes to the Disability Act 2005, to ensure a holistic and multidisciplinary approach to the assessment and identification of a child’s development needs; and
— recognition of the special educational needs of children in legislation, via changes to the Education for Persons with Special Educational Needs Act 2004, to ensure these needs are met in a timely and appropriate manner;
— the commencement and resourcing of all relevant disability legislation without delay;
— in relation to adults with autism, access to diagnostic services, to key worker support and appropriate mental health care where required, and a pathway of care which clearly maps services and ensures their consistent availability across the State and outlines how the healthcare, educational, employment and social needs of adults with autism are to be addressed throughout their lives and across the public service in terms of access to services, justice, housing, employment and social inclusion, with parity of access as the underpinning goal; and
— a clear system of accountability and scrutiny relating to autism service provision.”
Notes were being taken. When a family who are adjusting to the realisation of a challenging diagnosis come into contact with the services of the State, they should assume a culture of partnership, compassion and care, but notes were being taken. They fear for their child because of an autism diagnosis and ask how he or she will navigate the world. They wonder whether the child will have to endure prejudice, misunderstanding or isolation, and ask themselves who will partner with them to empower him or her, but notes were being taken.
Parents have long waiting lists, of 18 or 19 months for an assessment of need or of 35, 36 or 40 months for some essential interventions. Why are these periods counted in months? Thirty-six months is three years. They ask these questions at night, heartbroken at the sight of their sleeping three-year-old, who will be six years old by the time their country comes to their aid, but notes were being taken. In rooms where the compassion of the State should have been most manifest, notes were being taken to add to a dossier that would be used in a court case. If a parent was so exhausted and frustrated by the failures of this country to empower his or her child that he or she turned to the legal route, the State would turn to its notes. They are dossiers not just on the child but on his or her entire family.
The "RTÉ Investigates" programme broadcast last month exposed the culture of confrontation that emanates from the corridors of the permanent Government: notes were being taken. While the exposé was shocking, it was somehow, ironically, completely unsurprising because no one who has ever had to embark on this adventure with an autistic child would be in any way surprised by the culture, the systemic failures and the institutionalised obstacles we promote as a child-centred approach. No western democracy would attempt to stand over such pathetic waiting lists. No genuine republic would force parents to go on a hopeless merry-go-round trip of local schools to access a place for their child, and no country with aspirations for all its children would force families to the courts when they try to vindicate their rights and then reach into a filing cabinet or download a file within which is a dossier compiled by taking notes.
We in the Labour Party want the Government to take note. We want Dáil Éireann and the citizens to take note. Autistic people are a gift, an inspiration, a guiding light for all of us. We are enhanced, empowered and enlightened by them. Their potential is limitless; all they need is a society willing to listen, learn, love, empower and take note of who they are.
There was a man more than 100 years ago who took notes. He took notes for an address he would never make, during a struggle and a time after which he would be long forgotten. His name was Tom Johnson, the leader of the Labour Party in 1919. He was entrusted with the honour of scripting the Democratic Programme of the First Dáil. As voices such as his struggled to be heard over the sound of gunshots from the men and women of war and of flags, he wrote of the children. In his well-crafted notes, he wrote:
The Irish Republic shall always count its wealth and prosperity by the measure of health and happiness of its citizens. It shall, therefore, be the first duty of the Government of the Republic to make provision for the physical, mental and spiritual well-being of the children, to ensure that no child shall endure hunger or cold from lack of food, clothing or shelter, that all shall be provided with ample means and facilities requisite for the education and training of free citizens of a free Gaelic nation. A condition precedent to such education is to encourage by every reasonable means the most capable, sympathetic men and women to devote their talents to the education of the young.
We should reflect on the notes he took and the words he used, such as "health", "happiness", "physical, mental and spiritual well-being" and the need for "sympathetic men and women to devote their talents to the education of the young". This is the founding document of our State, of the Oireachtas. It is said of Tom Johnson that he wept openly when he heard those words read aloud as he had written them in his notes. Have we failed that aspiration, that purely republican aspiration, for the well-being of the children of the sympathy, understanding and compassion of that same State? As today these children try to find their voice between the flag-wavers and the tax-cutters, they now need to be empowered.
We need a national autism empowerment strategy to correct the mistakes of the State and to embed here the international best practice of others. The Maltese autism Act is a template this country should work from, an Act that in its citation seeks "to empower persons within the autism spectrum by providing for their health and well-being in society, the betterment of their living conditions, their participation and inclusion in society and to make ancillary and consequential provisions thereto in full adherence to the UN Convention on the Rights of Persons with Disability." There are those words again, as if inspired by Tom Johnson, "health", "well-being", "inclusion" and "betterment". It is an Act of empowerment and defiance that in the face of generations of misunderstanding, prejudice and underfunding, autistic people are now ready to defy the odds, the history of their state and the expectations of their country to live full, productive, healthy and love-filled lives. We should compare notes with Malta.
At the heart of the Maltese legislative achievement and of our motion is accountability. It is what parents are crying out for, in regard to service providers, to when mistakes are made and gaps need to be filled, and to this House, Dáil Éireann. These are the notes the Minister of State and the Government need to take. They should take note from Malta and the advocacy groups and parents' associations that are crying out for the State to take some of the burden in this empowerment process. I refer to groups such as those in Dublin 6 and 6W, which are working with Senator Bacik, or in Dublin 12, which I have met with Senator Moynihan and which are changing the world for their children, or to the children I have met in my constituency such as James Field and Abigail Cahill, who have changed my entire understanding of the world in which they live. The Government should listen to groups such as AsIAm, which empowered us in the Labour Party to draft our motion.
It is not right that parents feel they are at war with their Government and State.
It is exhausting, humiliating and defeating. They make phone call after phone call, write letter after letter, get referral after referral, are put on waiting list after waiting list and contact school after school and, all the while, notes are being taken. In recent days, we have been flooded with stories from all over the country which should shame us all. I refer to the mother in Limerick who has been told there is no space for her child in any local school and so must travel to Nenagh twice a day, covering a total of 184 km every day, because the transport needs of her child have not been resolved. Why should that mother believe that anyone cares? How can she possibly believe in this republic as she drives past the schools that cannot take her child in her own car because transport has not been arranged to take her child to a town in another county, 46 km away, simply because her child is autistic?
Many wonder if it is because of notes that the State is slow to respond. I refer to euro notes. Millions of those euro notes could be saved by empowering our autistic citizens. The money the Government thinks it is saving as it hopes that parents will access private assessments or therapy is a pittance when compared with the money that would be saved by preventing a young person with autism from becoming vulnerable. Such people are more likely to enter homelessness, to experience unemployment or to fall prey to addiction. If the Government thinks empowerment is expensive, it should try disempowerment.
There is, however, hope, ambition, vision and empowerment. We ask Government to support our motion. It involves an empowerment strategy that focuses not only on health and education, but on housing, transport and employment as well. We say to the autistic children, young people, women and men of Ireland that there is a reason "autism" sounds like "awesome". We say to them that they should strike their own note, sing their own song, play their own instrument in their own way and in their own time, and march to the beat of their own drum. We need them and we celebrate them. They empower us. We will empower each other. We say to their families that they are not raising their children to be second-class citizens; we will not permit it. We commend this motion for a national autism empowerment strategy to the House. It is time to stop taking notes. It is time to take action.