The Struggle to Get Control
Authors: Sam Mauchline and Paul Mauchline
Sam Mauchline and his son Paul explain the problems they've faced in taking control of their own support. Given Paul's human rights, and the commitment in Australia to support independent living, it is extraordinary that it is proving so difficult to get the most minimal control.
Our son Paul is 44 years old and has severe Cerebral Palsy requiring 24-hours care; fortunately he has good intelligence and very capable of making his own decisions and really wants to control has funding and lifestyle. Over the last two years Paul with help from my wife and I has pursued having his Block Funding changed to an Individual Package finally leading to three meetings at the beginning of 2014 with 2 senior managers from Aging, Disability and Home Care (ADHC) in New South Wales.
At the first meeting Paul was advised that the Direct Payment system would be the way to go and even though it required dealing with invoices and keeping track of expenditure he indicated that was the way that he wanted to go, the manager running it stated that she would now go back to the office and discuss it with others and bring to the next meeting the results.
At the second meeting Paul was told that there were no obstacles in his way to apply for Direct Funding, the only downside was that no completion time could be given. So, as an alternative, Paul's Accommodation Package and his Day Program Package could be combined into a single Individualised Package. The only condition attached to it was that Paul would be required to Broker it through an ADHC recognised Care Provider.
After a short discussion between Paul, my wife and I it was decided this approach would be acceptable. Then the senior manager stated that, as his current Service Provider already held these packages, if Paul was agreeable for them to Broker them, then the whole situation becomes so easy that it does not even require ADHC approval and that it could be implemented in the middle of 2014.
At the third meeting, because the senior manager that ran the first meeting was on holiday, her deputy ran it. On arrival she announced that full agreement had been achieved and the new funding package, titled Individualised Option Package would be implemented, on the 1st July 2014.
Paul was over the moon with this news that at long last he would have full control of his complete funding and life.
On July 2014, Paul started his new life but in less than a week it was blown apart when a letter from a Senior Manager (ADHC) stated that Paul's Accommodation Package would not be portable instead it would be locked into his Service Provider.
Here is the main text of the letter:
I am writing to advise you of the outcome of your request for an individualised funding arrangement under the Living Life My Way Framework (LLMW).
I am pleased to advise that you are eligible for an individualised funding arrangement for the service/s you currently receive (confirmed by your service provider) comprising:
Life Choices Package (annualized funding of $32,333.15)
Accommodation Support Package (annualized funding of $120,000).
We have confirmed with your service provider, On Track Community Programs that these two funding packages will now be considered as one budget for the purposes of support planning and service delivery as of 1 July 2014.
Please note that as the Accommodation Support Package is currently dependent on a shared support arrangement with other people it cannot be transferred to another service provider, nor used for a direct payment agreement (DPA) at this stage. Hopefully this may change in the future as ADHC works with service providers to further individualize accommodation arrangements.
As we had this agreement in writing, in particular that Paul would be able to choose his own Service Provider, we informed ADHC that we did not accept the contents of this letter and that the only acceptable way forward was to implement what was agreed to at the beginning of 2014 but this was rejected, even though we took it all the way to the Regional Director (ADHC Northern District) but she also refused to do anything about it and refuses to meet with us to discuss this disgusting situation.
All the way through these discussions even though Paul, my wife and I always made it clear that he was going for Individual Funding, never at any time was Paul told that his Accommodation Package would be locked into his Service Provider.
The end result is that Paul has ended up exactly the way he was before all this started. We really find it totally outrageous and unacceptable that the very people who are there to help instead keep placing obstacles in his way
It is very frustrating that nothing shall be done about this mainly because no one out there really cares.
In regard to Paul's Service Provider, their Disabilities Manger started us down this path and was very supportive but unfortunately he left, also the Senior Manager in ADHC (NSW) that we negotiated the agreement with was very supportive but she has also left both before the start date of 1st July 2014. The whole process was to get Paul off Block Funding (which is not portable) onto an Individual Package that would be portable and that's what was agreed to but the ADHC Regional Manager, refuses to recognise the agreement and also refuses to meet with us to discus the situation. All discussions took place outside the National Disability Insurance Scheme (NDIS) piloting.
So far at least 3 different departments have been involved in this mess which to us means they have no idea what they are doing, in fact one senior manager commented that many within ADHC (NSW) are struggling to understand what NDIS is all about. About 20 years ago the disability funding came from the Federal Government, was Individualised and persons with a disabilities that lived in Group Homes had full control of them - including interviewing and hiring the staff. If only all levels of government had have been willing to listen to us it would have resulted in a system that was fair and one that would have been implemented nation wide without the requirement of pilot sites.
The publisher is The Centre for Welfare Reform.
The Struggle to Get Control © Sam Mauchline and Paul Mauchline 2015.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.