Upholding our Commitment to Enabling Good Lives Posted by Posted by Jade Farrar on 20 March 2024 Posted on: 20 March 2024

Jane, I am not sure what your beef is here. I doubt anyone from the NEGL would claim that they invented anything! And the idea that IF was or is flexible and self-directed does demonstrate a lack of understanding about the level of control exerted on those funds and the people who use them. EGL was simply codifying some principles that had been talked about for a generation prior to 2011. It was not new. It was not particularly cutting edge. It was however the first real time in NZ that disabled people, their whānau and allies managed to set the agenda for the direction of travel for support.

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National EGL Leadership Group - the last few days have demonstrated the irrelevance of the EGL National Leadership Group, and indeed EGL. Flexible and self directed funding has been around since the late 90s, be honest about that. It was not invented in 2012. What was invented in 2012 is that those same people who benefitted from the F/SD funding regime (small select group of abled disabled) moved on to create a so called transformational scheme for a slightly wider group of people with disabilities. In so creating this scheme the EGL leadership group have created an industry for themselves that sees them not only receive very good support packages (not means tested) but also benefit significantly from consultancies / contracts / sitting fees et all, created by the industry. The National EGL Leadership Group's (NEGLLG) disconnect from the harsh reality that is most people's lives under the DSS funding mechanisms is best illustrated by the observation...Disabled people and Carers don’t necessarily want more resources................ NEGLLG let me tell you - the majority out there in the real world are crying out for resources. Respite; day programs; holiday programs; safe and meaningful residential care; behavioral management support/training; social workers; case managers aka someone who knows about them and cares; not being stuck in hospital because there is no disability/rehab support services out there; and finally - not being placed, as a young person with a disability, in an aged care facility because there is no front line services for you and last but by no means least, a Home Community Support Service network that works - not the model we have since 1994 and which has never worked leading as it did for you lucky few to flexible and self direct funding back in the late 90s. Evidence of your collective hubris is then completed by the irrational observation that "money is all locked up in services." Seriously? What services? How about being honest - the money is locked up in the bureaucracy that has become EGL /consultancies/contracts and sitting fees - all of which you all benefit enormously from. NASCs, Hosts and DSS's patronage of mates could not possibly be described as services, locking up money as they all do. Potential erosion of trust......................; news flash there has is not been a potential erosion there has been a complete erosion of trust including and especially in your group. You are all so conflicted by your own "lived experience" that you don't see the disability reality that is most people's lives in NZ, including how flexible/self directed funding is not the one size fits all panacea you promote (because it suits you). The bona fide outcry has not been from your ilk, it is from those at the coal face of poverty / exhaustion / with a lived reality of no support. The majority of people beyond distressed are those on very small support packages given their very significant needs, and for whom there is no such thing as access to care support workers (which your regime forces them to become employers, on top of everything burden they bear). Enabling Good Lies - that is all EGL has ever been. If not, then to a person on the Leadership Group declare what money you have received from the DSS system over the last 6 years for your consultancies, contracts and sitting fees. Tell us what your EGL package is? Therein, I am sure, we will see a lot of money "locked up/in". You won't because that would be too embarrassing Everyone counts or nobody counts, and NEGLLG you have just written a fluff piece worthy of pulp fiction. It is a shock to you to be suddenly confronted with the notion that like most others - you don't count. While mulling over that terrifying prospect - also consider that you are very much part of the problem, not part of the solution. Not that I expect you to have the moral fortitude to put this post up, but if I am wrong in my assessment of you then you will - unaltered. The truth hurts and while you can make money out there peddling division and false hope in equal measure, I have no doubt you will continue to do so.

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EGL has provided a vast range of choices and quality living experience's for those with disabilities. All on a set budget per person, it’s simply money used for the individualised needs of each person not wasted on set” you will haves” determined by a generic formula. Gaining the right to their own decisions( or their whanau doing this in aroha if that assistance is needed) provides the services that improve health and wellbeing, and extend the quality of the lives that are lived. It would seem time to take a hard look at how much money is now wasted on old outdated programs and how this can be moved forward to continue and grow EGL so more children and adults with a disability and their whanau can have a level of support that enables them to reach their full potential.

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