NDIS needs to recognise Dravet Syndrome as a disability!
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Please help me and other families like mine change the Government's stance on Dravet Syndrome. Help us have Dravet Syndrome recognised by the NDIS as the truly debilitating disability that it is.
Dravet Syndrome is rare, genetic in origin and consistently results in permanent and severe intellectual and physical impairments. At times the genetic marker cannot be found and a clinical diagnosis is only made after extensive testing. My daughter, Katie, who is 8 years old has Dravet Syndrome. She is severely, and permanently, disabled.
The Australian National Disability Scheme (NDIS) will not recognise the care and resources that we require to meet Katie's physical needs because they fail to recognise the syndrome as a disability in its own right. This needs to change...and this is why!
Dravet Syndrome is a rare and catastrophic form of epilepsy resulting in permanent physical and intellectual disability. It results in many symptoms that can present and be diagnosed individually or collectively. It is often associated with periods of developmental regression and plateaus. Many of the symptoms present, and become worse, during childhood for various reasons. These symptoms include, but are not be limited to, the following:
- a. Conditions affecting mobility and balance such as ataxia; brady kinesia; tremors; hypotonia; clonus; spinal and orthopaedic abnormalities.
b. Conditions affecting swallowing and feeding such as dysphagia and ataxic
c. Conditions affecting communication, speech and language such as dyspraxia and 'speech and language' disorder;
d. Autism with varying severity levels; ADHD; sensory, modulation and discrimination disorders;
e. Engaging in behaviours of concern such as self harm behaviour and aggression;
f. Psychiatric issues;
g. Intellectual disability with varying severity and low adaptive skills;
h. sleep, autonomic, vision and immunity abnormalities; and multiple drug resistant seizure types.
Our Katie, has been diagnosed with every single one of the conditions listed here... These conditions make it hard for an individual AND their families to access, and be included in, society generally... it is even hard just to get sleep! Despite the extensive impact of this disability, Dravet Syndrome is not currently recognised by the NDIS as a disability. Therefore, my daughter's disability has had to be listed by the NDIS as 'Autism with Intellectual Disability'. As a direct result of this 'pseudo diagnosis', we are not able to get Katie's physical needs funded. Autism doesn't have a physical component to its diagnosis. More than that though, this pseudo diagnosis fails to properly recognise the severity of our daughter's condition and therefore fails to properly reflect, or fund, her extensive physical needs.
For the past 12mths I have been advocating for the inclusion of Dravet Syndrome in the NDIS disability stream with no success. My family is now crumbling under the strain of caring for our much loved Katie. Katie now requires 1:1 specialised nursing support to attend school, any respite or out of school hours care, and active overnight care. She often requires a wheelchair for mobility and is fed via a feeding button know as a PEG. Her needs are high – so high that they are becoming impossible to meet with minimal respite/home nursing care and inadequate funding for equipment. You can see that Katie's physical needs are not akin to those experienced by children with autism. This is why Dravet Syndrome must become properly recognised by the NDIS.
My family is not the only family that has a child with Dravet Syndrome. My family is not the only family currently struggling with trying to meet the needs of a child with such high mental, physical and emotional needs. The NDIS needs to properly assess and recognise the physical needs of these children. I need your help. Please sign my petition, I am not just campaigning for our family. I'm seeking change at a legislative level for us and other families who will face similar situations now and into the future!
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