9/1/2018 Submission by Steve Roberts – Parent of an Adult with Disability
Submission by Steve Roberts – Parent of an Adult with Disability
Thank you for the opportunity to have input to this senate inquiry.
As a concerned parent in Geelong with active experience with the scheme, at inception and then after revisited budgetary constraints have impacted the services, I relish the opportunity to provide constructive feedback at a level above the NDIS coalface, and hope that the insight’s provided will help shape a better scheme
I have taken the time to look at other senate committees and their focus, which in turn raises several concerns with regard to how the scheme has moved away from its high level of support where we were able to significantly improve our daughters support, to the current model where we have been forced into significant stress and medical intervention due to the cuts in plan value, heavy delays in review, and the appalling contactability of the coal face LAC/Planners.
Please see the following key points I would like to outline for you.
Transport Issues /Costs
The scheme has defined levels of transport, depending on need up to a maximum of approx $3500 for a calendar year. This is in no way sufficient for an individual to attend to a service provider centre unless there is a bus service in place – but the vast majority of service providers in our region do not offer a bus service, have not any contracted bus services, and there appears to be no commitment by the providers such as GenU, Karingal, Scope etc to organize a bus service attached to their provision. This leaves parents of adults with disability to either ferry their PWD daily to programs, or utilize taxi services (too expensive for the amount of transport funding on offer). An organized and systematic approach to transport to and from disability programs that fits the funding possible is a must.
I would recommend smaller bus services with a drop off, using the pooled buying power of the schemes number of participants, will give best value service to PWD within the funding provided.
Program Hours vs Carer Self Support
It’s clear that there is a “school” mentality when thinking about the provision of disability services, this comes from the reality that these same service providers work with school age PWD, and have transferred that expectation of hours to adults with disability. School hours are unrealistic for adults with disability, and a millstone around the necks of carers.
Carers of People With Disabilities (PWD)
Carers of PWD are faced with extraordinary costs that are outside NDIS scope, and outside Medicare/Private Health Insurance.
They need to work to provide for these as they are not covered by any government assistance, even less so under the current budgetary restraint on plans/service under NDIS. But how do carers work in a normal sense when their PWD is required to be dropped off/picked up on school hours?
It is short sighted to think this is going to work longer term.
Plainly, an alternate frame of reference is needed for adults with disability, who will be with the community long after there are no carers alive to look after them.
Carers who cannot work due to requirement to pick up and drop off adults with a disability to programs, run around getting medical/psychiatric reports to accompany NDIS funding submissions, meet with planners, LACS, Package management providers etc end up being reliant on carers pensions, rental subsidies, and other government payments, adding to the cost to government of disability.
Plainly, enabling carers to be more able to work, and therefore better placed financially to support their adult with disability, and consequently needing less overall funding to perform their lifetime carers role.
I would recommend that NDIS funds and providers move to a modern and PWD focused system where hours of program care and transport are designed with the overall benefit to the PWD, and their immediate carers, to enable a better, self supporting life.
Disability Housing/Semi-Independent Living
As carers, we are faced with the same inevitable grim reality that we will at some point die, leaving our children to live in the society, and face their future. But what of Adult People with Disability?
Serious questions arise about where they will live, what care exists for them, when they are alone in the world.
We are no longer in the 1950’s, where they are shunted off to an institution, out of sight, out of mind, nor are we in the 1990’s where many institutions were closed, in some cases simply pushing residents out onto the streets
Our vision for our daughter is a shared care facility, as an independent home, with 24/7 care and supervision. This is a monumental task for a family, or group of families to consider, but we are seeing individual efforts to set these up among groups of carers with disability.
As we understand, NDIS does provide some funding for this kind of project, but not enough to make it viable as a project without a pay per service view, supported with a commercial loan, and without an agreed set of standards/care model. This level of organization is beyond the means and conceptualization of individuals who are normally up to their necks with day to day needs for a PWD and service providers.
This is where I see NDIS playing a key role to drive independent housing. They would be able to address the following;
- Disability housing standards and design
b) Care standards and provision of funding to support
c) Co-ordination of 24/7 care providers to independent/semi dependent disability homes
d) Provision of discounted loans to enable the construction of disability homes.
There are likely more points in this area that can be added, hopefully this is an are addressed by other submissions. This is an important, missing facet of the scheme as the vast majority of an individual PWD’s life is spent outside the care of their original parents, and without the income they have provided.
Independent Living Programs
As carers, we have always aimed to maximize the independence of our PWD, with a long term view to them being able to fend for themselves if possible. What we find with the programs we can get is that they are provided in a curricular form, (the school mode of thinking again), rather than an active living approach. There needs to be a stronger approach to aligning plan goals and programs that are designed to meet goal outcomes, which could be put together by using the pool of goal data NDIS has collected, to advise program providers on what is needed by their clients.
Speech Pathology
The ability to communicate for a non-verbal person is a key determinant to their quality of life. To be able to communicate pain, distress, injury, happiness – these are basic vital human needs, and have taken up a significant proportion of our lives as carers to maximize the outcome.
But what a battle.
For long periods, neither NDIS, Case Managers etc could even find one to use with our funding. I had to do so myself, by cold calling into a speech pathologist. We definitely got lucky, but being lucky shouldn’t be the way.
There are simply not enough speech pathologists available to meet the demand, and they are not interested as professionals to work with clients who are non-verbal, as they cannot get a result that is good speech – which means they are not interested to help a proportion of PWD. Our experience in this regard is that speech pathology is stuck in past methods of handling patients, does not want to use modern technology other than in ways that their members get a direct appointment and fee, and is not prepared to handle all needs for communication other than the use of words. Yet these members of our community would be greatly enabled if they could communicate basics needs to those around them. Our belief is that communication is a bigger, wider issue than speech pathologists, and in this area other professionals and methods that are more readily available to be used, lower cost, and not restricted by limited contact hours or supply of speech pathologists themselves. For example, the use of video speech modelling, which we have used with significant improvements with our daughter, should be funded separately as it is low cost, can be monitored by speech pathologists making better use of them as a limited resource, and lift the total effort towards improved communication.
I trust that this submission is constructive, practical, and helpful to the Senate committee and I can be contacted for further input if required.
Steve Roberts
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