If you are not familiar with this term I will share the whole proverb for you.
For want of a nail the shoe was lost.
For want of a shoe the horse was lost.
For want of a horse the rider was lost.
For want of a rider the message was lost.
For want of a message the battle was lost.
For want of a battle the kingdom was lost.
And all for the want of a horseshoe nail.
This proverb should hang in every single NDIA and NDIS office in sight of every staff member. Sometimes small but meaningful accommodations can save a lot of money and energy as you navigate the path of the necessary supports. I am not talking about medical cures and processes, but rather, alignment with the values and goals of the person requiring NDIS funding.
I am not even going to write about the medical model of disability because in most cases we all strive for recognition of the social model of disability. This model calls on the way society at large must adapt and make reasonable accommodations for a disabled person to have access that is inclusive, authentic and meaningful. This model is about removing barriers that prevent disabled people from pursuing a typical life with the added fundamental right of equality and I will say again, inclusion.
I am not a voice for all people with disabilities and don’t dare to presume what the meeting of simple needs in the early stages of a person’s life or disability would mean. Remember not all people are born with a disability some acquire it through accident, illness or a late diagnosis.
I am an autistic person with ADHD and also have a co-existing mental illness. That mental illness diagnosis is depression, anxiety and PTSD. Anxiety is a typical co-existing condition with neurodivergent people. PTSD unfortunately is due to some early childhood trauma (not of my parents actions), and then there is depression. I am going to address the elephant in the room immediately. I believe my depression is a direct result of a late autism diagnosis. Of not understanding why I felt different but not in a good way. A lifetime of masking and trying to fit in. Autistic females are more adept at fitting in usually.
Nine years ago, my depression was so deep and my life was in danger. At this point there was absolutely no curious investigation into my neurotype and the go to treatment was ECT (electro convulsive therapy) or as most people know it – shock treatment. This treatment stole memories from me and impacted my self-confidence for a very long time. It successfully jolted my brain out of depression though. I used to be grateful. Now I am fucking angry. I despair at the loss of memories. I despair at the most likely unnecessary invasive treatment. I despair that a very experienced psychiatrist was not at all familiar with the DSM-V and how autism in females typically present. Despite knowing, my son is autistic.
If the horseshoe nail for me had been an earlier diagnosis, I thoroughly believe I would have avoided ECT and many, many admissions in a psychiatric hospital. I would have connected earlier with my fellow neurodivergent tribe (who I love dearly) and the pain and suffering I endured due to confusion, misunderstandings and burnout could have been avoided. This does fill me with rage. I have read so many stories of women my age finally receiving an autism diagnosis. We all have similar reactions. We feel a level of grief and a-ha moments. I know I have returned to incidents throughout my life that are now so much easier to understand, the veil of confusion not lifted but understood.
Can I get an NDIS plan? Most likely! Will I? I doubt it! You see with my executive disfunction I struggle to manage the NDIS plan for my son. His first plan was great and aligned with his goals and was a complete success. This year the NDIS have not considered his goals and we are going through the stressful process of appealing. The devastation of his underfunded second plan knocked the wind from my sails and created such a high level of anxiety and burnout that I was admitted in a private psychiatric hospital for two weeks. All I could think about was how small the NDIS had made his life and of the frequency of future appeals at the end of each plan.
The NDIA must surely train their staff to have foresight and recognise the dreams of their clientele. The need for continuity and the recognition that goals that include self employment should be heartily supported. A self employed or employed NDIS participant is a wonderful goal for each individual. These goals are written by each participant to assist with making their lives meaningful and add value to their life and possibly their family or their community. This is the big picture stuff. This is the Kingdom we don’t want to lose sight of, all because of a horseshoe nail.