Author: Dell Stagg
This letter was written to Jenny Macklin, Minister for Families, Housing, Community Services and Indigenous Affairs by Dell Stagg about the situation of her daughter Michelle. It is a moving description of the kind of battles that families face in achieving good support for those they love. It also indicates some of the challenges that will be faced by the Australian government in developing an appropriate system of entitlements to individualised funding.
Your support and assistance in making this not such a trial for those of us who have already done the hard yards would be most appreciated. I am happy to meet with you about this if you believe it would be useful. You know most of our story, but I am going to repeat some of it here.
I am the mother (or unpaid family carer) of my daughter Michelle, who is a 47 years of age adult with profound severe and multiple disabilities and who is unable to articulate her wants and needs. My role in her life must be equally acknowledged in the NDIS and respected in the development of the new legislation.
Due to the failures of the system of the day, and because of illness and accident, to both her father and me Michelle had to live in an institution (congregated support living arrangement) from the age of 7, and for the next 18 years of her life. This is something that rarely occurs today, because of improvements in the way people with disability are now supported.
The failure of the agency that ran her institutional accommodation to provide her with appropriate care and support led her to become so unwell that she was at risk of an early death. So I removed her from this arrangement and she now lives back in her family home, with my support, and has done so for nearly 22 years.
During this time I have negotiated a reasonable package of support funding with the state government, which saves them at least $70,000 per year compared to the government funded accommodation and support service (a cumulative saving of about $2 million so far). So far I have good levels of choice and control over her funding for supports and services. I say "I" because no matter which way you look at it or how you might say it, Michelle cannot make these decisions for herself. Her developmental age has been assessed as "less than a 3 month old baby", despite her physical development being similar to an adult. She has significant health and medical conditions and is blind.
Please note that I have negotiated and secured the agreement. It has taken many years to get it right and to use this allocation of assessed funding to purchase supports and services in a way which makes the most sense to us. Please note I say "us", because I also have the need for supports and services to compliment and assist me to provide the very best care for her, and to plan for her future using this arrangement, so that she does not have to ever again go to live in one of the dreadful and potentially dangerous institutions that people call "group homes" in the hope that this sounds more palatable.
Because of my involvement with a disability organisation, I have been privy to some of the discussions emanating out of the circles of federal NDIS bureaucracy. I have heard that even though there are many service funding recipients, (people with disabilities, and where appropriate, their family carers), who have already had an assessment, made a plan and been allocated an amount of funding to compliment their plan, these arrangements will no longer be honoured and all allocations will be taken away from individuals and go into the NDIS "pot" to be redistributed, following a new and assumedly different set of arrangements, facilitated by persons unknown to us who have no concept of the needs of our daughters and sons with no long term personal involvement with them or us.
This is despite that fact that it states in the Council of Australian Government's High-level Principles for a National Disability Insurance Scheme:
Part 7.1 Provide continuity of support to people with disability currently receiving services to ensure that they are not disadvantaged in the transition to a National Disability Insurance Scheme.
It is also stated, in the SA Disability Services Act 1993, Part 4:
In receiving the services that supply such assistance and support, persons with disabilities—(b) have the right to have those services provided in a manner that (i) involves the least restriction of their rights and opportunities; and (ii) takes into account their individual needs, goals, age and other personal circumstances
If we are required by the Rules of the NDIS to go back to square one not only are we at risk of significant disadvantage, not to mention increased stress levels, we are also being denied our rights under that particular Act.
There are many, many Australians with Disability (e.g. in Victoria. South Australia and Western Australia) where families, over many, many years, have worked tirelessly, often with the support of their disability funding agencies, to develop a supports and services package which make "most sense to them".
So as you develop NDIS, please remember us:
We don't want to jump through any more hoops, we don't want to talk to strangers and tell our story yet again. We just want to continue doing things the way we are doing them now... with the option to renegotiate should circumstances make that necessary.
I look forward to hearing from you about this matter.
The publisher is The Centre for Welfare Reform.
Michelle and NDIS © Dell Stagg 2013.
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.
A summary of concerns about the design of Australia's important National Disability Insurance Scheme (NDIS).