Speaking during a debate with the Minister for of State with responsibility for disability, I asked Minister Finian McGrath for urgency from Government in the provision of supports and services for children and young people with autism in the West. The current lack of services is leading to additional far more complex difficulties in the future.
I quoted one parent, Amanda McGuinness “Essentially the voices and future of the children are being stolen from them as a direct result of lack of therapies available. It confounds me that the Government do not see the problem that will befall society in years to come when all of these children are adults and have little or no life skills, are unable to care for themselves and have sent their parents to early graves from all the stress and worry.”
The lack of services and lengthy waiting lists for everything from occupational therapy to physiotherapy to respite is unacceptable. Autism services are constantly put to the bottom of the pile. Everything is a battle. There needs to be clear information regarding the new amalgamation of services – who is responsible for what. Parents have no idea who they are supposed to contact for help or therapy.
This adds to the an already stressful situation faced by parents. The ‘system’ is complicated. They are passed from one agency to another. The fact is however, these children and many others like them appear to be invisible to the Government. They have rights and needs.
Many of the parents who have been in contact with me are not only under financial pressure; they are physically and mentally exhausted. There should be a respite plan for these parents. Parents tell of being on lists for respite for two to three years and are now being told it will be years before they get any respite. Parents need to be able to plan their own time with other children in the family. With no indication of any respite, this becomes a daunting task.
With proper planning and sufficient targeted resources families should be able to live full and wholesome lives without being forced to live in desperation and frustration.”
Children and young people with autism are citizens who deserve to be empowered to reach their full potential and enjoy their individual interests and talents. A child being left non-verbal because speech therapy is not available is unforgiveable.
