Why I'll never stop fighting for my children - will you help me?
The first was we managed to secure an appointment with a child psychologist after waiting for nearly two years. This unfortunate cancellation for someone else was an opportunity we had to grasp for our eldest boy.
The second was the momentum created by my petition to end the unfair treatment of special needs teenagers in Ireland.
My intention was to write a blog about the issues children with autism face in the class room as they adjust to the new normal of living with Covid. I still intend to do this, but I want to use this blog to explain why I raised my petition and to ask for your support.
As any parent of a child with special needs will tell you, the fight for their rights never ends. It seems that when resources are limited, it is usually those most vulnerable in society who miss out.
As my boys grow older the struggle gets harder and does not seem to ease. Despite the time it takes, despite the effort it exerts and the energy it drains I will never stop advocating for autism awareness and highlighting the injustices those on the autism spectrum still face. This fight is the driver for my petition.
My eldest boy started secondary school last summer and an issue which had perplexed me for a while was that at 16, despite still being in education and still a child, he would be forced to apply for Disability Allowance on his own behalf as an adult and be judged fit or not for work.
This is something I will not stand idly by and witness. I have written to politicians of all political shades and received no reply, so I have taken matters into my own hands and raised a petition for the Minister of Disabilities Anne Rabbitte TD.
This is to end the unfair treatment of special needs teenagers, who are forced to transition from their much-needed Domiciliary Care Allowance to Disability Allowance whilst still in education. This is both unfair and discriminatory.
As many of you will know, I am the father of two boys on the Autism spectrum, because of their lifelong medical conditions they qualify for Domiciliary Care Allowance, which is a monthly payment for a child aged under 16 with a 'severe' disability. The child must need ongoing care and attention 'substantially' over and above that usually needed by a child of the same age. It is not means tested. This is very useful to fund the myriad of expenses that help in providing them the best possible care and also seek private options for support removed by the state.
When a child with special needs turns 16 under the current legislation in Ireland, they lose their Domiciliary Care Allowance and have to apply themselves as an adult in their own right for Disability Allowance .
Disability Allowance is a means-tested payment for people with disabilities who as a result of their disability are substantially restricted in undertaking work that would otherwise be suitable for a person of their age, experience and qualifications.
As any parent of a child with special needs will tell you their condition does not magically disappear overnight and the process of applying for any support is both time consuming and a traumatic experience.
It should also be remembered that any Disability Allowance application is supposed to be completed by the person applying i.e., the child. Many children with special needs at 16 find this impossible, especially those with autism where dyslexia and learning difficulties are a major part of their diagnosis.
I wrote to Anne Rabbitte TD in October and got a holding letter, given the delay in reply, I decided enough was enough and have started a petition which I hope to grow and present to the minister.
I fully appreciate that once a child becomes an adult they should be judged as such but children of 16 are still at school.
Their disability has not gone away and legislators should at least change the regulations so those still in education continue to receive Domiciliary Care Allowance .
Once they are finished with education and ready for work, they can be judged by the criteria used for the award of Disability Allowance.
My campaign is just one week old, and
my petition can be found on my website autismdad.ie my twitter account
@autismdad67 and Facebook page autismdadireland
I hope this is a cause you can support by signing and sharing my petition which can be found here End the unfair treatment of special needs teenagers
Thank you in advance for taking the time to read this and I hope to speak to you again soon.
Our fight goes on.
Kind Regards