The NDIS have just launched their “Participant First Engagement Initiative”. The name is, honestly, quite terrible, but the idea is AWESOME, and you should get involved if you’re willing and have the available spoons.
The NDIS is looking for a bunch of people with disability and family carers to join various working groups, answer survey etc etc.
They’ve put out a form to get people to sign up, and I’ve made an Easy English version to encourage people to sign up easily, which you can find right here!
Please join up and/or encourage people you know who use the scheme to join and help make it better. Only our voices can change this – we need lots of them.
The official info is here: https://www.ndis.gov.au/news/4993-participant-first-help-shape-ndis
Contact EVERY client and help them assess their critical needs, supports and ability to manage if/when it all goes pear shaped.
Here are the questions (reworded from our internal slightly to take out my swearing and add a few things I missed) our team are talking to our clients about.
Please don’t assume you know the answers to above without that direct conversation (where possible). I have been surprised by the gaps, and our support and ideas have been appreciated.
At The Growing Space, we have worked to assign each participant a risk level (A-D) to help us know when things get really bad, who is most at risk, based on the answers to these questions – it also means that if one of our team can’t work, someone else should be able to quickly and easily pick up and follow up with those who need it the most.
And don’t forget – what is *your* plan for maintaining your mental health, and what is *your* back-up plan if you can’t look after your clients yourself?
Support Coordinators are not medical or legal professionals, so don’t cross those boundaries – be aware of your limitations and refer out as needed.
All the best during these tough times!
Copyright of The Growing Space 2020 – please share, but with credit and no edits. And remember – this is not medical or legal advice, and is very time sensitive – things are changing very quickly – seek professional advice if you need it! March 20, 2020
pic desc: an illustrated green virus icon with an open mouth and scared looking eyes.
Feel free to download and use one of these on your front door – at home and your workplace to remind people to stay away if they’re sick, and to wash their hands as they come in.
You’re welcome to share these freely
Here is a .pdf version: https://www.thegrowingspace.com.au/wp-content/uploads/2020/03/Do-Not-Enter-TGS.pdf
And here is a .jpg image version: https://www.thegrowingspace.com.au/wp-content/uploads/2020/03/BIG-PURPLE-DO-NOT-ENTER-SIGN-MARCH-2020.jpg
This is useful for those with low literacy, intellectual or cognitive disability, learning disability, and for some from CALD or ATSI backgrounds. In the pdf each sentence below is accompanied by a relevant image. The language is simple and clear and accessible. The resource is five pages long and covers information about self isolation and business closures and distancing rules.
This handout is copyright of The Growing Space 2020. You are welcome to share, copy and distribute this handout whole, with credit and no edits. If you would like to publish this handout, please contact us at info@TheGrowingSpace.com.au for approval.
Please download and print a pdf of this list to keep somewhere prominent in your home and workplace. You just never know when you need to call, for yourself, someone you love, someone you work with, or a stranger on the street.
The downloadable document linked above includes clickable links to phone numbers and websites for more than 40 Australian helplines under the following topics.
Emergency services
Alcohol and drugs
Crisis counselling
The National Disability Abuse and Neglect Hotline
Domestic violence
Eating Disorders
Gambling
Health
Homelessness
LGBTI
Men
Mental Health
Police assistance
Seniors
Sexual assault
Suicide prevention
Veterans
Victim/Survivor support
Women
Young people
So, today the guy responsible for NDIS – Minister Stuart Robert – gave a speech in Canberra to a pack of journalists, and he outlined a bunch of stuff, and here’s a few of the key points, as I see them.
1. ECEI: Wait times for little kid access to the scheme have been reduced and are now sitting at under 48 days. VERDICT: This is good.
2. WAITING: Access decision timing (finding out whether you get into the scheme or not) has dropped to an average of 12 days, and there’s an average of 88 days to get a plan once you’ve been accepted into the scheme. VERDICT: This is good.
3. “Joint planning” sessions: where participants have an input on draft plans etc before approval should be fully rolling out by April 2020. VERDICT: This will hopefully be good, but I see potential problems with availability of staff to make this happen.
4. JOBS: We need 90,000 new jobs in the sector – that’s going to take money, time and effort, and the Gov will work on this. VERDICT: This is good for the economy, but we have to be careful to bring in and train the right people for these jobs, and not use this just as a way to get people off newstart, some of whom will have no interest or skill in serving people with disability. Hopefully it will mean that more people with disability will consider training and working in the industry!
5. DRC/COAG: State and Federal governments are meeting on disability stuff every 90 days. They’ve made agreements on health stuff, disabled children in out-of-home-care and hospital discharge. Also, each state should now have a Justice Liaison Officer to work with disabled youth and adults in the justice system. VERDICT: Slowly slowly, but hopefully with more frequent gatherings, more will be done, sooner!
6. Transport: No big changes in transport other than to continue the taxi subsidy schemes until they sort out a better policy, and to increase transport funding for those who are already heavy users of the taxi schemes. VERDICT: Yeah Nah – they bloody well need to make a proper fix to the transport debacle, not this tinkering with the fringes rubbish.
7. Independent Assessments: by July 2020 independent assessments, funded by NDIS will be available for people seeking NDIS access and for reviews. These functional assessments won’t come out of participants’ plans and are designed to make access and funding more equitable.VERDICT: Jury is still out – this has potential to create more equity but I have concerns that assessors might be grumpy judgy bastards, or that what they see on any particular day of assessment is simply not indicative of overall functional assessment – we all have good and bad days – I don’t want us to go back to the bad ol’ days where you kept your kid up all night and didn’t give meds on the day of assessment!
8. Flexibility in plans: CORE and CAPACITY building “buckets” will be flexible, so if you run out of therapy money, you can shift funds from CORE (assuming you have it) and iuse that for therapy, or vice versa. VERDICT: The devil will be in the detail, but this is a GREAT step forward in choice and control and better utilisation of plans
9. SDA: the original SDA funding model meant that if you lived with people without SDA funding, the payment to the provider was severely reduced. Now, you can live with WHOEVER YOU DAMN WELL PLEASE, and it won’t reduce your funding. VERDICT: YAY!!! (but appalling that it was ever designed in that way to start with)
Now, I also have to mention, that at the same time as Minister Robert was giving this speech, his government quietly pushed some legislation changes through parliament with passage of the NDIS Amendment (Streamlined Governance) Bill 2019 which mean that Government no longer need the States and Territories to agree on NDIA board member appointments – so now the Minister can override the States and can sack or hire whoever they want on the NDIA board. That doesn’t sit particularly well with me.
Overall, I reckon there’s some really good stuff today, but we’ve all got to continue our advocacy and vigilance to turn and keep the scheme on track!
PS: these are my personal views, so your mileage will vary – I encourage your feedback and perspectives below! And if you want to read the Minister’s speech, it’s right here: https://ministers.dss.gov.au/speeches/5266 or you can watch it here: https://iview.abc.net.au/show/national-press-club-address/series/0/video/NC1912C008S00
This post is copyright of The Growing Space 2019. You’re welcome to share this on Facebook with credit and no edits. If you want to share it anywhere else, please check in with us first for permission. Thanks!
Image description: banner of the word VERDICT with lines above & below, dark blue on white background. (with thanks to Susan Hoffmann even though she doesn’t want it ;))
This is just so individual – every person with disability has different goals and different ways to achieve them. If you’re stuck on what a typical life looks like, check out this awesome document produced by the NDIA Independent Advisory Council: https://bit.ly/2Ky6ymp and if you’re stuck for what skills are typical of different age groups, check out http://media.focusonthefamily.com/fotf/pdf/magazine/checklist-4-lifeskills.pdf (It’s American, and most of you won’t need to worry about learning to shovel snow, but there are some great ideas in this list)
I THINK they want to see your great grandmother’s first pet cockatiel’s remains. I dunno, but I reckon this would be a good start: https://www.valid.org.au/10-steps-excellent-ndis-therapy-reports
As soon as you request a review, you should start gathering evidence to support your requests, and provide it to the Agency. For scheduled regular annual reviews, I’d be asking therapists etc 8-12 weeks before the plan ends to start writing! They can be slow to respond, and if you only give them a week’s notice because you just got a call to schedule your appointment next week, you’re really giving them an unreasonable timeframe. They may not be able to give your report the justice it deserves.
Reports are great for all of your Capacity Building support categories – that usually means therapists, but, that depends on how you’ve used your funding to work toward your goals. Always. Be. Working. Towards. Your. Goals.
I’ll write another whole post about goals. NDIS are starting to use “SMART GOALS” now – here’s a cool presso about developing goals in the meantime: http://www.dhs.state.il.us/CBL/DDWritingMeaningfulGoalsandMeasureableObjectivesVersion2.pdf and googling “SMART Goals” will help too.
And so will think link from the awesome Disability Services Consulting gang. http://www.disabilityservicesconsulting.com.au/resources/why-language-matters
Mwahahahahahaha. That upload feature? I call it “The Black Hole” but you should be OK if you emailed and gave paper copies in person. It will depend on the planner’s workload, and maybe on whether her partner yelled at her that morning, though you’d like to think that wasn’t the case, we’re all human. At The Growing Space, we tend to “assist” at the planning meeting by pointing out relevant bits in the reports as we go along, with the least dangerous assumption, which is that the reports may not be read later. I think they are though, usually.
We all get scared about this. I hear you. It’s not good for our mental health! One option is to request a new 12 month plan rollover without a formal review with the funding remaining the same – sometimes this will be granted. If not, make sure your Hubby’s goals are fully in line with the supports and services you want funded, especially for any capacity building therapy type support needs. Good luck!
Yeah, It’s a weird one. The NDIS act says (in different words) that funding must be tied to goals, so I always suggest that at least one broad goal, like “I want to live an independent life” will cover most of that kind of common sense “core” stuff.
This guide was written for therapists, but equally applies to others who might write reports for your review. https://www.valid.org.au/10-steps-excellent-ndis-therapy-reports At The Growing Space, we work hard to steer people to innovative ways to meet their goals, so your question is a good one for my team to think about too. Thank you!
Yes. Do it. Then recycle and edit it next year. It’s a baitch. It’s painful, it drags up grief for many, but planners need to know what’s going on for you that might impact the care the person you love is getting. Do it with a friend, and chocolate, and scotch, or gin. Write a silly one, and then cry and write a serious one. It could also be valuable if you end up at the AAT. The lawyers do read it and interpret it according to the law. Which can be somewhat different to the Agency’s approach at times.
It could well make a difference to your funding. If you’re autistic, and then lose your vision, for example, your needs and funding will, be necessity, be quite different. If the new diagnosis isn’t for something newly acquired though, and you’re just collecting labels, that’s probably not gonna make much difference. But it might. It won’t hurt to give the Agency a copy of the formal diagnosis from the relevant professional. It could also be valuable if you end up at the AAT. The lawyers do read it and interpret it according to the law.
Good question. I don’t know. I don’t think so, as often the review goes interstate etc to be reviewed by someone with fresh eyes and you don’t actually ever talk to anyone. I’m *fairly* sure there’s nothing in the NDIS Act that requires the Agency to allow this (but anyone, please correct me if I’m wrong)
You can ask, but I’m would be almost 100% certain it would be denied. One point of a RORD is that someone new makes a decision based on the available evidence (which is why you should always submit new/better/awesomer evidence when you request a RORD.
Here’s a link to an awesome guide to therapist reports https://www.valid.org.au/10-steps-excellent-ndis-therapy-reports
That stuff will depend on the age and needs of the person. I’d be looking at an updated DSM5 diagnosis for both ASD and ID, or just some really good reports from an OT or similar therapist, with an emphasis on functional impairment, rather than just IQ numbers etc. An ABAS can be useful – there’s a huge range of tools – a therapist with lots of NDIS experience is probably best to ask. Not me. I’m just a daft Support Coordinator with a Certificate IV.
If you needed that funding, and didn’t use it for valid reasons, I suggest you document those reasons, in writing, and make sure the planner has that answer, in writing. Otherwise, you run the risk of someone internally, higher up the food chain, cutting the plan because they don’t have that information. Providing that documentation doesn’t mean you will get the funds again, but it might increase your chances.
You kinda can’t, though when you are called to make a regular scheduled plan review meeting, you can always let them know nothing has changed and you are happy for another 12 month plan with the same goals and funding. Whether they honour that or not, is up to the Gods.
“My disability support needs are stable and I’d like a plan that last two years please.” Request it in writing and in person at your review. There are no guarantees, and it’s less likely to happen for a first plan, but there’s certainly no harm in trying! Be careful though, you might find the plan comes back with less than what you need and you might be stuck waiting for a review for longer…
It should only affect the new plan if you haven’t used it because you didn’t need it, not if you couldn’t find providers, didn’t understand the plan, were in hospital etc. That doesn’t mean the new plan won’t have less – each review looks afresh at your situation, goals and needs.
Definitely approach your local funded advocacy agency – you can find your local ones by plugging in your postcode here: https://disabilityadvocacyfinder.dss.gov.au/disability/ndap/
Once you have an NDIS Plan, you have already “transitioned” and state funding stops the day your NDIS plan starts. For you, the process will be the same as any review of a reviewable decision. There are a tonne of links and answers to that question above, and you might find more help at https://www.thegrowingspace.com.au/library/ I wish you all the best!
Could be any of a HUGE number of reasons – your son aged out of early intervention, he made progress on his goals, the planner didn’t like your haircut, he didn’t make progress on his goals with the funding last year, the scheme actuary is worried the scheme is overspending, you got too much in the last plan… I wish I could answer that better.
If you needed that funding, and didn’t use it for valid reasons, I suggest you document those reasons, in writing, and make sure the planner has that answer, in writing. Otherwise, you run a greater risk of someone internally, higher up the food chain, cutting the plan as you’ve experienced. Proving that documentation doesn’t mean you will get the funds again, but it might increase your chances.
That’s a topic for another post, but googling “NDIS ACT section 34 reasonable and Necessary” will give you a good start. In general terms, however, factors taken into consideration when figuring out your funding include your age, stage of life, primary disability, functional impairment, living situation and natural supports. The category funding will be figured out by linking the supports required with your goals.
26. What are the reasons you don’t get what you have asked for when you have reasonable requests requested by trained professionals. Instead of reviews can they just let you know what areas they need more info about. For example, if they cut funds due to lack of use can they just have you write a letter explaining wait times in the country, therapist change overs or being unable to use funds due to ndis mistakes!
This is a big question, and out of scope for this post. https://www.thegrowingspace.com.au/ndis-tips-how-did-they-come-up-with-the-dollars-in-my-plan/ Has some of what you are looking for – You’ll need to subscribe to read it, but a free subscription will work for this article, and if you want to read more, you can claim the subscription fee on your NDIS plan if you’re self or plan managed with a good plan manager.
A Review of reviewable Decision (RORD) is when you don’t like a decision the agency has made, like the amount of funding in a particular category, or a category was missed etc.
A change of circumstances review is when your plan was OK, but major stuff happened (moved house, lost a job, got a job, carer family member died etc) and you need your plan reviewed for more funds, or funding in different buckets, for example.
There’s a bunch of posts on that here: https://www.thegrowingspace.com.au/category/ndis/ndis-reviews-and-changes/ You’ll have to sign up to see them – some are free, for others you’ll have to pay a subscription (which you can then claim from your plan if you are self managed, or have a good plan manager). And here’s some info from the horse’s mouth, too https://www.ndis.gov.au/medias/documents/h6d/h24/8804044996638/Plan-Review-Participant-FAQ.pdf
Because that is part of their job as the Local Area Coordinator. 80% of plans and reviews will be done by LACS, only 20% will be done by the NDIA, though the NDIA does all approvals.
Yes. Yes. Sometimes a CoC will be quicker if the change means someone is a great risk ie: leaving jail, becoming homeless etc. Probably not – depends on the change of circumstance.
Either, but I have heard that some LAC’s tell people to go to the NDIS to request it, and I’ve heard some NDIS offices tell people to go to their LAC’s. F*ck knows, really.
There’s a bunch of posts on that here: https://www.thegrowingspace.com.au/category/ndis/ndis-reviews-and-changes/ You’ll have to sign up to see them – some are free, for others you’ll have to pay a subscription (which you can then claim from your plan if you are self managed, or have a good plan manager). And here’s some info from the horse’s mouth, too https://www.ndis.gov.au/medias/documents/h6d/h24/8804044996638/Plan-Review-Participant-FAQ.pdf
Hmmmm… There doesn’t seem to be a lot of consistency. If you ask for a RORD you might find that the whole thing just “happens” like magic, and you had no further input, other than your original RORD request. You should not expect that the NDIS will contact you to gather more information about the reasons you are requesting review, nor more reports to justify your request etc. If you ask for a RORD, I recommend that you provide all the evidence the agency might need to give you a fair answer, in writing, at the time you ask for your review, or very soon afterwards.
Pretty Please? This is actually a part of the much heralded new “New Participant Pathway”, coming soon to a location near you. Sometime. Hopefully soon. Don’t hold your breath, you may die. But it is coming, and is already happening in some areas. Yay!
36. How long will my old plan be active?
Payment requests can generally be made from the old plan for about a month or so (I don’t *think* there’s any consistency on this). If, however, you miss the boat, don’t wig out, you can send in a manual payment request form like this: https://www.ndis.gov.au/medias/documents/self-manage-payment-request-docx/Form-My-Plan-Purchase-Payment-Request.docx (I’m sorry the NDIS have a shit website and this link is so long. It’s not their fault. DSS made them do it that way).
If your plan is Agency managed, your provider can send in a manual payment request too, so don’t you get lumbered with doing that.
Most probably. Usually. They are not 100% consistent about this.
You can only claim for stuff during the life of each plan. If you’ve had a gap between plans, when your new plan starts, the old plan will (it might take a week or so) be extended up to the day before the new one starts. You’ll need to make claims from the appropriate plan that corresponds to the dates you used/bought the support.
Sweat. And call, drop in and email, and then contact your MP if you need to.
Annual reviews are generally done face to face, whether with LAC’s or NDIS planners. If you’re asked to do a phone review and you don’t want to, please ask for a face to face review.
I have a quiet solution to this. Don’t ask the NDIS stuff. So sorry you went through this. Anytime you make a complaint about something that is a reviewable decision (there’s a list of them in the NDIS Act) it could be taken as a verbal request for review. Not that the NIDS need you to request a review for that to happen. The NDIS Act gives the Agency the power to review your plan at any time, even without your request. Yikes!
When “should” or when “will”? You “should” hear within a few months, but it could be a few days, or more likely, many months. The NDIS is understaffed. The people in there are working headless, day and night. If you haven’t heard in three months, I’d start nagging a little, and at six months, I’d be knocking on the door of the AAT and/or my local federal politician. Good luck!
You don’t. Sorry. It sucks. There have been many suggestions made to the NDIA to have a “tracker” of some kind available through the portal, so that a participant/nominee can check at any time what stage of any internal processes you’re at within the NDIS. Fingers crossed that when the NDIA hopefully is able to wrench the website away from DSS and get their hands on their own portal, we’ll see these kinds of improvements. Feel free to send an email to the NDIS making this suggestion at feedback@ndis.gov.au
It does make sense. There’s conflicting info about the answer though. The AAT have basically said that you shouldn’t give up your right to review because you’ve started a new plan, and that the AAT’s decision should be reflected in the new plan. I don’t know how that’s panning out in real life though. Sorry I’m not more help on this one.
Just your new plan usually. If you were denied something you asked for, you can ask for the reasons why in writing, and you could then se this if you decide to go to AAT for further review.
An NDIS planner delegate who has “fresh eyes” for your plan.
How to get a review
Yes. All of the above.
Yeah nah. Although, if you have a horrendous time with a planner, or she’s your ex’s new partner, or your old boss and you hate his guts, it is very fair to ask for a different one. I’ve found the Agency to be obliging when there are genuine valid reasons for requesting a different planner (and same for LAC’s)
If you’re able to drop into an NDIS office, do it. Otherwise you’ll likely be sending emails into the black hole, or leaving phone messages that get sent to the same place. Sorry. And I’m extra sorry for regional, rural and remote peeps who have no option. I’m sorry this extra sucks for you.
You can make a request to take your review to the Administrative Appeals Tribunal (AAT). Most (95% of people who go to the AAT are offered and accept a settlement before reaching the actual tribunal). This saves you having to go to the full Tribunal and potentially having your life exposed to the world, and also means the NDIS doesn’t have to risk losing at tribunal which they may not want set as a precedent for others.
Check out this AAT Quarterly report at https://www.latrobe.edu.au/lids/resources/aat-ndis-decision-digest
Also, check out his twitter feed if you’re a twit https://twitter.com/darrenodonovan
And check out this awesome blog too: https://ndiscases.blogspot.com/
ARRRGGH!!! I feel your pain! If you can get into the office and cry, that might help. I don’t really mean that. Wait, yes I do. I don’t know. Make sure they know how urgent this is and that your kids are missing out on services because they haven’t made this change yet. Make your request in writing, via email if you can as a follow up too.
Yuck. I’m not a lawyer though. The NDIS Act trumps the guidelines though. I’d be rereading The Act. I think they do need to provide a reason though. Maybe go above them and ask?
This crap makes my blood boil. A review request can be made by email, letter, phone, in person or bloody carrier pigeon or even fax if needed (does the NDIS have a fax machine? “What *is* a fax machine?” asks all the millennials). Regardless, in writing is ALWAYS a safer bet – by email. Or even go into an office if there’s one close enough, and ask then to give you a receipt for your correspondence.
Great question. Luckily, smarter people than me have answered it as per: https://twitter.com/darrenodon…/status/1063205551704698880
Unfortunately, with NDIA it seems to be strings all the way down. Which is the most outrageous, awful injustice… At AAT you should always request that a new plan is activated within a specific length of time e.g. 14 days. (not my words –Sam)
I have already written a post about this at https://www.thegrowingspace.com.au/ndis-plan-expiry/ You need to be a paid subscriber to read it though, but most people who are self or plan managed can claim that subscription on their plan.
Just quietly though, if you didn’t pay your plumber for a month, would she keep coming back to serve you? Providers are (often) human too, and we have bills to pay, staff to pay and children to feed too. We can’t keep serving people for no fee. Did you know that apparently the Tax Office (ATO) has a whole NDIS division set up just to support providers who can’t meet their BAS bills because of non-payment of NDIS services. ☹
And from another poster: “By law, they are not allowed to leave current participants without funding between plans. You have every right to ask for a plan extension and pro rata funding, until the new plan is activated. I have always done this through the finance officer at my local office – as they seem to get things done more effectively. If this does not occur, you should contact the Ombudsman. It is unreasonable for the NDIA to expect providers to cover the costs, when the funding is not guaranteed.”
Just because. Which is my way of saying who knows. It’s bizarre. I get some of these back in hours, and others take months. I don’t imagine to know how they prioritise this stuff, if indeed, they do prioritise. I’m sorry. In case you didn’t, make sure to make that request IN WRITING at your next planning meeting. Leave NOTHING to chance.
Sam Paior, The Growing Space
Copyright November 2018 – This post can’t be copied, or redistributed in any form without explicit permission from The Growing Space. This took me AGES and I don’t want it nicked.
