Thursday, 29 April 2021
National Autism Empowerment Strategy: Motion [Private Members]
Parents of children with a dual diagnosis of autism and intellectual disabilities do not feel represented by Inclusion Ireland at talks and when strategies are being implemented. They feel under-represented because the parties do not understand or cater for both autism and intellectual disabilities. Instead, each supports one or the other. The challenges faced by those with a dual diagnosis have not been highlighted enough. The consequences leave vulnerable families unheard and left to manage solo, which has a significant impact on the well-being of the families as a whole. The restructuring of services has put a stop to the few services families were receiving from the public supports.
I know of a child, Jack, who has been self-harming and hitting himself in the head daily since last January. One year later, his family are waiting for him to be seen by the Brothers of Charity psychology service and CAMHS. His parents are desperate for support in the interim. However, there is no psychiatrist in Ireland who will see a child under the age of 18 with Jack's diagnosis. Such children have to be seen by CAMHS, which is clearly understaffed. The result is that another family has been left to try to cope with the reality of watching a child turn on himself violently.
Across Ireland, many children are still in the wrong school settings. Many children with a diagnosis of autism need a special class separate from mainstream classes, while those with intellectual disabilities may need a place in a special school. These children regress and suffer identity issues as well as mental health issues as a result of their misplacement. Staff try their best to support the needs of the children but struggle to do so due to the lack of support, services and training.
The Jack & Friends centre for autism opened in Bandon, west Cork, in 2019, at which stage it supported 60 families. It now supports 300 families in County Cork. It does not have any paid staff; its staff are all volunteers. It offers free counselling to parents and affordable occupational therapy and speech and language therapy to children. It does so by arranging bag packs and bucket collections. These parents of children with complex needs carry out this fundraising in order to keep the premises they rent for €1,000 per month open. They offer weekly social groups for children to build their self-esteem and confidence among their peers in a safe and accepting environment. It is an affiliated charity to the National Federation of Arch Clubs, which caters for people with special needs and supports approximately 40 clubs around Ireland. Prior to the pandemic, it was keeping its head above water - just about - through hard work and word and dedication, but it is now struggling to survive financially and keep this vital service going. I plead with the Minister of State to help in some manner because the group is looking after a massive catchment in Bandon and the surrounding area. The group cannot apply for funding as it is a sub-club and, as such, could not avail of any supports the Government issued for not-for-profit organisations in the past year. It needed a door to stay open. It needs help.
July provision for children with special needs is welcome and necessary. However, the vast majority of schools do not run this provision in-house. This results in families seeking suitable teachers to carry out the hours with the children in the family home. A child with autism will benefit far more from remaining in the school environment to avail of the hours. I ask the Minister of State and the Department of Education to make it compulsory for schools to deliver July provision. It is important that it be provided on the school premises because the home environment is more difficult for children with autism. All Members know families with autism, who encounter many difficulties. I again plead with the Minister of State to consider the case of the Bandon centre for autism.