Dáil debates

Thursday, 29 April 2021

National Autism Empowerment Strategy: Motion [Private Members]


6:40 pm

Photo of Gary GannonGary Gannon (Dublin Central, Social Democrats) | Oireachtas source

My thanks to the Labour Party for bringing forward this important Private Members' motion. My thanks go to the previous contributors for outlining their personal experiences on the issue as well. Those of us in the Social Democrats are highly supportive of the motion.

An emerging theme in most of the contributions in the Dáil in recent months has been the issues that we cannot unsee from the pandemic. I am referring to the inequalities and inequity made all too visible during the pandemic and too tangible for us to continue to ignore in our society.

Tonight's motion is somewhat different. People with autism have had an incredibly difficult time during the pandemic. Routines and social structures have been upended from the closure of schools and the removal of services. The eventual reopening of school buildings rightly prioritised students with disabilities but wrongly excluded students with disabilities in mainstream classes. This is significant for children with autism because in 2017 the National Council for Special Education estimated that 65% of children with autism in school were in mainstream classes. We also learned of the incredible report of secret dossiers compiled and maintained in the Department of Health containing sensitive, personal and private information on children with autism and their families.

People with autism and their families suffered long before the pandemic and have always had to fight for basic rights and entitlements. The relationship with the State has been unnecessarily fraught and adversarial. The country is consistently ranked among the lowest in Europe when it comes to people with disabilities experiencing underemployment and unemployment and at risk of poverty and social exclusion. It is shameful but fitting that we were the last EU member state to ratify the United Nations Convention on the Rights of Persons with Disabilities in 2019 and that today many provisions within the Education for Persons with Special Educational Needs Act 2004 remain outstanding. For example, the special education appeals board, to which a decision made about a person with special educational needs can be appealed was established in 2006. Still, the board is not yet in operation. The way people with autism have been treated over the course of the pandemic is a continuation of collective experience that was ongoing pre-pandemic.

Any trust that existed between people with autism, their families and the State was fully broken when the practice of the Department of Health and the Department of Education in compiling and keeping secret dossiers on children with autism and their families emerged. It was reported in late March this year thanks to the courageous actions of whistleblower Shane Corr. There is no trust that an internal review can restore. How could it? Only an independent statutory investigation is appropriate and it needs to take place urgently. I support completely the calls from families and advocacy charities like AsIAm and the Disability Federation of Ireland for nothing less than that to take place.

The Private Members' motion references the incredible report by the Office for the Ombudsman for Children, entitled Unmet Needs, which was published last October. I want to reference the stories of several individuals highlighted in the report. Lucy is non-verbal and had a diagnosis of autism spectrum disorder combined with mild general learning difficulties. She has a communications device but neither Lucy nor her family have been taught how to use this device as of yet. She still continues to communicate using limited amounts of sign language. Lucy was recommended for speech and language therapy and physiotherapy in 2015 following an assessment of needs. However, at the age of 11 years she has still not received the clinical services recommended to her as a six-year-old. That situation is absolutely unbecoming of a modern republic.

The report also highlights Andrew's story. His mother was told Andrew would have to wait one year to access a psychological assessment. This impeded his mother's ability to access the ASD specialist preschool for her son. Michael was non-verbal with suspected ASD. His mother was told to go to the Circuit Court to force the HSE to implement the assessment after waiting 19 months for an assessment of needs.

How many in this Chamber have heard of similar experiences? What is extraordinary about the stories of Lucy, Andrew and Michael is how common they are. Often in this Chamber we are accused of trying to point-score or make things about politics that should be about people. The experience of families and children across the country in trying to get appropriate and timely diagnoses, intervention and support is not about point scoring. It should not be political. Anyone here who has made a representation for a family desperate to get an assessment of needs or get the services or support from an assessment knows that the system is broken, as do all those in the system. We need to stop equivocating. Parents have had to fight tirelessly and consistently against the State to get basic rights and support for their children. This is true in the case of healthcare, education and social protection.

TheIrish Examinerreported in early March 2021 that almost half of all applications last year for disability allowance were turned down but almost two thirds of appeals were later revised or granted. It seems entirely unnecessary that it has to be so difficult. On the domiciliary care allowance, which only extends to children up to the age of 16 who have a disability which requires ongoing care and attention, in 2019 more than 70% of families were denied their initial application for the monthly domiciliary care allowance for their child, and had the decision overturned on appeal. There were 3,630 appeals received under the carer's allowance in 2020.

The Department will say that overall only 1% of claims are appealed annually, but these claims are disproportionately among those living with or caring for people with disabilities.I have no idea why people with autism and their families are continuously asked to wait for a year, 19 months or, in most cases, several years for an assessment of needs, the provision of services, or autism spectrum disorder, ASD, places.

It has been 16 years since the Education for Persons with Special Educational Needs Act 2004 and it is still not fully implemented. They cannot be asked to wait any longer for us to take action. I finish by thanking the Labour Party for bringing forward this motion and I strongly urge the Government that if it is not going to oppose this motion and if it accepts it, to act upon it because to do otherwise would be simply disingenuous.


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