Thursday, 29 April 2021
National Autism Empowerment Strategy: Motion [Private Members]
I welcome the opportunity to speak on this important matter. The challenges facing people with autism have been raised by Sinn Féin in this House on several occasions. Two years ago, we made a number of proposals for an autism strategy, including the need for a dedicated autism committee. We are back here again, however, pressing the Government to stop failing families across the country.
Since we put forward our proposals, the obstacles facing people with autism have become even more pronounced. This is evident as we deal with the consequences of the Covid crisis and the recent revelations that the Department of Health has been collecting secret dossiers on the families of children with autism who took legal cases against the State. I have been dealing with a number of cases where parents are facing roadblocks to getting assessments for their children. One parent who contacted me earlier this year told me of the difficulties she encountered in getting her child assessed for ASD. The parent in question was attempting to get her child treated through CAMHS for a separate issue. She had to get her child to ruled out for ASD before CAMHS would even entertain having the child on its books. That was roadblock number one.
The second obstacle this parent encountered was in getting an appointment. She told me the assessment under the public system would not have taken place until September 2021 at the earliest. To ensure her son would get the services he needed, she had to get him assessed for ASD privately, at a cost of €2,000. This is not an isolated case. When I inquired about it, the HSE pointedly told me that children do not need a private ASD assessment but families may elect to seek one. With all due respect, parents in this situation do not elect to seek a private assessment. They find themselves with little or no choice but to do so because the public waiting lists are so long and time is of the essence when it comes to getting treatment for their child. It was a completely disingenuous response from the HSE. The legal requirement to carry out an assessment of need within six months is not being taken seriously and, as a result, the waiting time is now 19 months.
People are sick and tired of facing roadblock after roadblock in seeking a service for their children. As the Labour Party motion points out, the delays that have resulted from the Covid crisis have made an already bad situation even worse. The autism workers I have spoken to say that it is only when something focuses attention on the needs of people with autism that their voices get heard. Many of them feel that, most of the time, the shortcomings in services are left in the lap of the gods. One worker told me today that what is needed is ongoing, active involvement on the part of policymakers. People need to know they are being listened to an ongoing basis. They must have confidence that what they have to say will be addressed and acted on. It is for precisely this reason that the Labour Party motion, like the Sinn Féin motions, was brought before the Dáil. Otherwise, these issues would fall off the Government agenda.
I conclude by referring to the revelation that secret dossiers are being kept on the families of children with autism who took legal cases against the State. The motion calls for a full independent review into this matter. I fully support that proposal. There should be no shortcuts and no cases left unaddressed. The positive contribution people with autism make to our society is not sufficiently recognised and supported. Fortunately, there are wonderful organisations that embrace the talents and contributions of autistic people. Autism Awareness Roscrea and the South Tipperary Autism Support Group are among them. We must ensure that organisations such as these receive the right level of commitment from the Government and can continue to support people with autism in their communities.