Like so many out there, I am an overwhelmed, stressed, and tired neurodivergent parent trying to help my neurodivergent children.
There are so many things to get right on a daily basis to make sure things run smoothly for both them and me. One of the things that is on the mind of every parent with special needs children, is how we are to get the most out of their NDIS (National Disability Insurance Scheme) plan. Something that can be unnecessarily challenging, and even more so when you have more than one child.
I am a parent to four beautiful children. My eldest, Liam is 11, then Cooper is 8, Ryan is 8, and my girl Madison the youngest and nearly 2. Three years ago, Liam was diagnosed with Autism Spectrum Disorder Level 2, Sensory Processing Disorder, Social Anxiety and Specific Learning Disorder – Dyslexia. It was a life-changing diagnosis and the first I had been confronted with, but it would not be the last.
When I received his initial NDIS plan, I was surprised and overwhelmed by the amount of time, paperwork and communication needed between each of his providers. Liam has 10 providers including speech therapy, occupational therapy, support workers, psychology, paediatrician, GP, his school, local area co-ordinator and plan manager helping him to achieve his goals. I found myself responsible for managing and relaying complex health information between everyone. I feel like I am still exhausted from this experience, and to this day don’t know if I am getting it right.
Through my lived experience and through discussions with other parents I found that they had the same experiences. The amount of time required to discuss progress and goals for a child with a disability or neurodiversity is astounding. I found myself spending between 1-3hrs a week communicating with each of Liam’s providers.
When I talked to providers, their main concern was the lack of time they had to communicate with the participant’s supports due to a shortage of workers in the industry specifically occupational therapy and speech therapy. They too, would like to know who is providing care for their NDIS participant and what progress they are making towards the goals they are trying to achieve.
I decided to take matters into my own hands. This was not something that should have been a major cause of stress when parents of neurodivergent children already have so much on their plates. All these parents are trying to keep their head above water on a day-to-day basis, and to keep both theirs and their children’s emotions at bay. Many of these parents, like myself, are also questioning whether they are also neurodivergent because a child’s diagnosis makes us question ourselves.
I wanted to develop something that would help parents and carers in the same position and start to solve the communication headache to allow participants and those that assist them to achieve their goals to communicate together instead of working in silos. I wanted to relieve parents from the mental load and exhaustion that comes with a child with additional needs. I wanted to streamline communication so that instead of updating everyone, I could work harder on therapies and connecting with my child.
In late 2021, I started to develop something which would change the lives of families like mine.
Carefully Planned is a web-based platform that is also mobile responsive and streamlines healthcare action plans, goals, notes, documents, reviews and comments for parents and carers of children or adults with additional needs and the health providers they work with, both in and out of the NDIS system. It allows all providers to connect to the NDIS participants profile to read their diagnostic reports, look over their health and medical data and participate in the goals that they are achieving.
It allows the NDIS participant or their nominated representative to store all the important information to stop the fatigue in telling the same stories over and over. It allows everyone to come together to communicate effectively without having to schedule a meeting. This software is securely designed so that the choice and control stay with the participant so as you age, and change providers no information is ever lost. Carefully Planned will be free for providers, and participants who already have a NDIS plan will be able to claim the subscription if they are self-managed or plan managed. We are working towards being a NDIS Registered Provider.
I’m so proud that Carefully Planned will be able to help so many families when it launches in July, families just like me.