I am writing this on behalf of my child who is an NDIS participant
Whose disabilities are
Dysautonomia/Postural Orthostatic Tachycardia Syndrome, Hypermoblie Spectrum Disorder
(diagnostic criteria is that people under 19 can not formally be diagnosed with Hypermobile Ehlers Danlos Syndrome) it means that the connective tissue in all of my childs body is affected.
And Autism Spectrum Disorder.
Often these disabilities are coexisting with each other and cause significant disability impacts on all aspects of the person’s life.
These disabilities are life long, with no known cure.
They are often misunderstood, research is limited and underfunded. There is limited to no access for services in the medical system that can make meaningful improvements to a person’s life.
It can take years to decades for correct diagnosis and often after seeing multiple doctors for answers or diagnosis
- What does the NDIS mean for you right now? NDIS funding has meant that my child could have access to allied health professionals who specialise and under stand all of the complexities of my childs disabilities.
It has given my child access to specialised therapists who have been able to improve my childs quality of life. Keep my child engaged in the community and to be able to attend school and stay at school.
Access to these specialised therapists is not available without NDIS support and is not available through the public health system.
There is only one public clinic available in Australia. This clinic is only run in an adult hospital, with a reported 5 year wait list – even for urgent cases.
My older (now adult 22 yo). Has similar diagnosis and disabilities along with ME/CFS.
Without access to NDIS my older child became bed bound for a long period of time and then mostly housebound. My older child was not able to complete schooling and has not been able to obtain employment
- How do you feel about the proposed changes to the NDIS Act? In November I received a phone call from a NDIS Planner who decided to do a plan review.
When my childs plan was not due for assessment until May the following year.
With that plan the planner decided to take away all funding for two of my child’s specialised allied health staff.
The planner significantly cut funding for the remaining allied health staff.
They then took away funding for consumable supports that are required for my child’s disabilities- leaving only $200 that had to be used over 3 years.
They added in funding for a therapists that my child does not access through NDIS or had been using, in compasion to the specialised staff that funding was cut for.
Despite my childs paediatric doctors clearly indicating that funding for the staff that were cut, are vitally needed for my childs disabilities.
The call from the planner was unscheduled and I was not provided enough time to gain undated reports from therapists.
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Do you feel these changes have been explained clearly enough? I do not feel like the changes have been explained clearly enough at all. Access to changes have only been found or indicated via social media posts.
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What would these changes mean for you, your family, friends, carers, or community?
The changes have meant that my family can not afford the level of access my child needs to vital supports to help. It could mean functional decline for my child and losing ability to stay at school or reach educational potential
It could over time increased cost that my family can not afford. Increased reliance on the public healthcare system that is not equipped to support my childs disabilities.
- What would happen if your social and community supports were reduced or removed?
It could mean my child will loose access to staying at school and engaged in the community.
- What would happen if your capacity building supports were reduced or removed — or if you never had access to them in the first place?
One of the major changes proposed in this legislation relates to how the NDIA defines
“permanence” in relation to disability.
Under these changes, participants could be expected to try all available treatments
before being considered eligible for the NDIS. Importantly, treatments may still be
considered “available” even if they are unaffordable or not available in your area.
With this in mind, you may also want to reflect on:
- What would these changes to the definition of permanence mean for you? It could mean that my child does not reach educational potential.
In turn increased reliance of public welfare systems and public healthcare systems.
An overall reduced quality of life.
If my child could retain access to NDIS supports
It could mean that the opposite is true.
With higher quality of life, employment and community engagement.
Much less reliance on the public healthcare system over the course of my childs lifetime.