Submission 1487
Submission on the NDIS Amendment Bill
I am a:
- Family member / supporter
- Retired Specialist Education Teacher
My connection to this issue
I taught in a specialist government school for over 18 years. My students were children and young adults who lived with moderate to profound intellectual disabilities, physical disabilities, autism, psychiatric diagnoses, other medical issues.
I then worked for a state government emergency services agency for over 24 years and successfully promoted the increased access to safety and emergency response information for people living with disability.
I also have family members (adults and young children) who live with autism/neuro dergent diagnoses.
I work casually developing accessible documents (Easy English and Social Stories) for NDIS participants.
My overall view of this Bill
I have serious concerns about the Bill as it stands. I feel it will seriously disadvantage community members who live with a disability. It will most certainly place crippling financial and emotional stress on family members. It will limit community access for people living with disability.
My main concerns
Children / families / early intervention
An autism diagnosis is a lifelong condition. It is not an illness. Autism cannot be cured. (By the way, why isn’t the description of severity levels in the Diagnostic and Statistical Manual 5 used here, Levels 1, 2, or 3. It’s part of the diagnosis and would mean consistency of language used).
Removing access to individual programs for children who don’t have complex support needs and delivering support through everyday community settings, means they will receive less support. I’ve seen this type of model in practice before. It is all too easy for money to be redirected to other needs within that community setting. Most community
Submission 1487
settings have competing budget priorities, money gets redirected. That will happen, of that I have no doubt.
Local community settings cannot be the solution; they provide a myriad of support needs for their communities already. This includes but isn’t limited to families affected by addiction, financial hardship, mental health issues, domestic violence, other abuse, people experiencing homelessness.
Also this will mean more work for families, locating and engaging with appropriate allied health services to supplement the deficit inherent in this strategy. How are they supposed to ensure accountability? What happens to families who haven’t the financial wherewithal to supplement this? This happens now with NDIS child participants. How much worse will this be when money is funnelled into community supports and not to individual participant’s programs.
If you remove individual support at this early level, it will adversely affect long term development. Costs saved here will result in increased community and personal costs later in the child’s life.
I’ve taught children who had no early intervention support, one of whom was a teenager before their family enrolled them at the local specialist school. It is a huge void to straddle.
What I want the committee to understand
Please remember if you’ve met one person with autism, you’ve met ONE person with autism. Your experiences with that person do not mean that you know how the next autistic person you meet will present themselves. Autism Spectrum Disorder is just that, a spectrum with infinite variety, as are NDIS participants
The amendments proposed will place a huge amount of pressure on individuals and families. These families never rest.
It is a constant journey of appointments, waiting rooms, unceasing advocacy, vigilance (Are they being over stimulated? will they be able to self-regulate emotions in a new setting? Will they cope if we go out? Can they get out of the playground/yard/someone’s house? Will the childcare centre really understand that certain gestures/ word will lead to a meltdown? …and so on ad infinitum and I do mean ad infinitum)
Every time there is a change, these families do a massive amount of work on top of the massive amount they’re already doing. It assists if they have a good relationship with whoever is providing support for their child.
Providers that offer consistency with regards to personnel working with participants and families make this a whole lot easier for families. I’ve seen this happen both
Submission 1487
professionally and personally. It is both productive and reassuring. I do not believe that local community services would not be able to provide this level of support.
My position on this Bill
I ask that the Government withdraw this Bill and reconsult more widely prior to proposing any further amendments.