It’s not for want of trying but my attention has been temporarily diverted to bigger bureaucratic battles.
I touched upon it in a previous blog entry (Too Soon to Tell) but that is only part of it.
In recent years, the Australian Government has been trialling a new support scheme for people with disabilities. Currently, support services are provided by a mixture of Federal and State funding and delivered by a mixture of private, State and Local Government agencies. The support available to people varies depending on where they live, how much money they have, their disability and how their disability came to be. It wasn’t fair that two people can have the same disability, same needs and not be eligible to receive the same services.
Disability can happen to anyone, anywhere, anytime for all sorts of reasons. The new system is supposed to be more equitable. It will nationalise disability services and will be funded by an insurance scheme. The idea is that everyone pays a levy through the tax system to the National Disability Insurance Agency (NDIA) and the funds raised will go towards administering a National Disability Insurance Scheme (NDIS) which will provide the funding for people with disabilities to receive the support services that they need.
It is designed to give people with disabilities more choice about their services and how their allocated funding can be spent. There have been trials around the country with varying levels of success. I have heard good and bad stories. One also has to allow for teething problems with anything new. Now the NDIS is being gradually ‘rolled out’ across the country, soon to arrive in my neck of the woods.
Therefore, there has been much correspondence and information to digest; also forms to be filled and deadlines for submissions of paperwork. My current support service will close approximately 6 months after the NDIS arrives so I need to do a lot of research about where my new supports will come from etc. and make decisions about managing a new support plan; e.g., do I want to self-manage or hire someone to do the administration on my behalf? Will I have the physical capacity? Will I have time for my actual life if I need to do the administration myself? And so forth.
To manage the extra load of NDIS planning, I decided to cut back on other activities this year; e.g. exhibiting at Maker Faire, publishing patterns etc.; and was all set to deal with that when the State Government Transport Department announced that they were going to change my local rail line and take away my local train station permanently!
I have been trying to get straight answers from the State bureaucrats since August 2016 and they kept saying that no plans have been finalised. They were still saying this to me in June 2017 when the Federal Government confirmed that the station was going to be removed!
This is terrible news. The train station is my only independent access to public transport. The trains are wheelchair accessible, affordable and reliable. I cannot ride busses because their motion is too sudden and jerky. It’s too dangerous –by the end of a bus journey, I am too exhausted from hanging on for dear life to actually manage the rest of my outing!
The next nearest railway station is about a kilometre away–too far for me to wheel myself and the footpaths are in such a deplorable condition, they are too difficult and dangerous for me to use. The next station in the other direction will be uphill. I can’t even walk up a hill like that, let alone wheel. So I am most upset. Driving the car to the station defeats the purpose and after an outing, I am usually too tired to drive home anyway so I would need to rely on someone else to get home.
Taking away my station, takes away my independence.
Being the passionate person that I am (an indignant one as well–this railway change reeks of disability discrimination), I had to take up the fight. I feel that unless I do everything I can to save my station (and my future situation), I can’t justify complaining about it when it’s gone. It is so upsetting to have worked so hard for so many years–to get fit enough to wheel myself to the local station and go out independently–to have my supports ripped out from under me, just when I was beginning to experience quality of life again. These bureaucrats have no idea of the effects of their actions and what it means to people. It makes me very angry.
So I have been on the phone, sending emails, talking to people, doing research etc. trying to firstly, work out what will happen and try to have some influence on the outcome and then, trying to gather support to keep our station. It is frustrating because my energy and time is so limited. I feel like Arthur Dent and the hyperspace bypass. (Douglas Adams, “Hitchhikers’ Guide to the Galaxy”) “Beware of the leopard!” (My experience is just like that!)
So there’s the NDIS, the transport and somehow trying to keep my health on track amidst the stress, when the Health Department announced the closure of another one of my support services (a therapy service): you can read about that in "Too Soon to Tell". So I had to drop the transport fight and pick up a new one. Fortunately, the new one is under control for now and back to the train business. I am so desperate to keep my independence. People with disabilities should have the same choice to use public transport as able bodied people. Grrr!
Thus, my blog, Lupey Loops, has become a casualty. Lots to blog about, but at the end of the day, I cannot look at another computer screen or type another word (and I am sooo wanting to share the remaining beanie and show photos).
Reaching for my crochet hook to calm myself down, I discovered that, through all the stress, two of my projects had mistakes so it feels like there's been more undoing of crochet than actually doing lately. I’m forcing myself to take time out from campaigning today and get some housework done (you should see how quickly the work piles up when you have your head in a pile of papers), focus on my health and lose myself in crochet.
What’s on your hook today?
(I’ve been working on the baby blanket, frogging broomstick crochet
I hope there will be more crochet and better news to report next time!
Related Posts on Lupey Loops
"Beanies to Berets Exhibition and Sale Now Open!", 25 June 2017: https://lupeyloops.blogspot.com.au/2017/06/beanie-to-berets-exhibition-sale-now.html
"Guessing Game Answer", 30 June 2017: https://lupeyloops.blogspot.com.au/2017/06/guessing-game-answer.html
"Too Soon to Tell", 20 August 2017: https://lupeyloops.blogspot.com.au/2017/08/too-soon-to-tell.html
"A Quickie", 5 September 2017: https://lupeyloops.blogspot.com.au/2017/09/a-quickie.html
Fun at the Beanies to Berets Exhibition and Sale (Part 1), 20 September 2017: https://lupeyloops.blogspot.com.au/2017/09/fun-at-beanies-to-berets-exhibition-and.html
New Baby, New Blanket, 28 September 2017: https://lupeyloops.blogspot.com.au/2017/09/new-baby-new-blanket.html
Royal Adelaide Show Results 2017, 17 October 2017: https://lupeyloops.blogspot.com.au/2017/10/royal-adelaide-show-results-2017.html
National Disability Insurance Agency: http://www.australia.gov.au/directories/australia/ndia
National Disability Insurance Scheme: https://ndis.gov.au/