Submission regarding the proposed changes to NDIS
I am the mother of 3 adult children who all receive support from NDIS in order to live happy, safe, productive lives. My husband and I are now both in our 70th decade and have spent many years working towards creating a secure future for them. We were among the first families to benefit from the NDIS, after many years spent joining campaigns fighting for a better future for our children, and it was life changing. It gave us hope that they would continue to be supported when we are no longer alive. It allowed me to continue to work in my chosen field as a health professional with unsociable hours and on-call requirements. We remember only too well what life looked like before the NDIS. It was (and still is) a fantastic scheme that Australia should be proud of.
My children all have an inherited genetic disability (Fragile X Syndrome) which causes varying degrees of intellectual impairment.
The condition is life-long and permanent. There are also co-morbidities which add further needs for medication, specialist treatments, appointments, therapies, and support. In their childhood years we pursued every possible therapy, treatment, education and program available to maximise their potential. This produced some improvement, of course, but they are who they are and there is nothing that can change that.
The proposed changes are not yet clear but several points have given us great cause for alarm:
The proposed reduction to community access and social support;
For them, this is an essential part of what makes their lives meaningful. They cannot drive, fill in forms, join in community participation, socialize, attend appointments, etc without appropriate support. Simply having meals and medications is not ‘having a life’.
We have worked hard towards providing them with their own home, at no cost to society, to secure their future. But they require on-going support to live as independently as possible.
The proposed changes to non- NDIS registered support workers;
After many abortive trials of using agencies, having to accept whatever ‘carer’ was allocated for any particular shift (regardless of the appropriateness of the person arriving- or not arriving on occasion), self-managing, and much time spent by us ‘filling in the gaps’ while working ourselves, we now have support workers who have been with them for many years. They are not NDIS registered and I understand that this would be a very expensive and protracted process should they choose to become so.
They are more than staff, they are like family. They know and understand our children’s specific issues. They truly care and have our full confidence in managing our children’s needs. They are economical and inventive in the time used, they provide much more than simply seeing that food and medication is monitored, they are flexible in their approach and give our children the opportunity to interact with the world in a very meaningful way. If the choice and control of who we can use is removed their lives will be greatly and adversely affected. Trust and familiarity with those managing their lives is of utmost importance.
The proposed changes to NDIS planning, ability to contest decisions, lack of personal contact with decision makers;
It has become increasingly harder over the past few years to actually make any personal contact with those making decisions. There is no transparency or consultation as it is, and from my understanding of the proposals, this will now be even harder if not impossible. For example: last year one of my sons had $20,000 arbitrarily removed from his total core budget. This was only known to us when a delegate (from another state) made a phone call for a ‘planning meeting’ only to tell us that this was actually the new plan approval meeting – take it or leave it! We had not even SEEN the plan at that stage. There was no explanation given for the reasoning behind this cut.
We then had to submit a Review of Reviewable Decision, repeat the submissions and reports already made - which no-one had bothered to read or take into account- and wait 3 months for the decision to eventually be reversed. From what I have read so far, this process will be even harder and the ability to contest decisions will be removed. It seems that you are reducing our children’s lives to tick boxes with no attempt to understand what their needs truly are. We once had nominated LACs who we could meet with to discuss our situation. Now we get faceless delegates from an office on the other side of Australia who present us with a Fait accompli – and no avenue to complain or have any input. And no ‘rollover’ for plans that are working well. Creating further costs in administration of reports, assessments etc. Longer times to wait between decisions and/or changes
We understand that the NDIS is a large expense, but the alternatives are not economical nor practical, and frankly, inhumane. For every $1 spent in provision it is estimated to create double in terms of employment and tax. The loss of wage earners and therefor taxpayers is substantial, and parents having to stay at home to care for their disabled children reduces the workforce and tax income further.
It has been suggested that families have to take on more responsibility, particularly for under 18 year olds. This has led in the past to families collapsing under the strain, having to stop work to care for their young-adult children, families separating etc. Aging parents such as ourselves cannot continue to provide support until death. NOR SHOULD THE GOVERNMENT PRESUME THAT THIS IS A VIABLE OPTION. And when we die? Are you going to place our loved ones in expensive care facilities? Or simply leave them to fail?
Instead, the cost of caring for our most vulnerable citizens could be covered in several other ways;
Increasing tax paid by our ultra wealthy 1% of the population by 1% - this alone would probably cover the shortfall instead of the remaining 99% bearing the cost Paying better scrutiny to where the cost blowouts are actually happening e.g. one line item that my son has been allocated is for Behavioural Support Therapy. This is an NDIA managed item and the cost is $234 per hour! I know that the practitioner does not receive this amount so where is the justification for this cost? I don’t know of many professionals who earn such a high rate. Certainly I never did! Better monitoring of agencies and therapy providers who charge excessive fees. By not using an agency and using our own (non NDIS) support workers, we are saving the agency money.
Control the requirement for on-going reports and assessments particularly for permanent disabilities. Our team have written so many over the past few years, at costs taken from the recipient’s funding, yet apparently no-one ever reads or takes note of what they have submitted Perhaps a small increase to Medicare payments to diffuse the overall cost
I would like those in control of the NDIS to remember the basic underlying principle of looking at each individual and asking ‘What does THIS person need for a good life?’
Our disabled loved ones require different supports and they all deserve to have ‘A good life’
And so do their long-suffering families
Yours sincerely