Category Archives for "NDIS"

Nov 27 2018

Your 57 NDIS Review Questions. Answered.

These are the broad topics you’ll find in this post.
You can also find a whole series of posts at https://www.thegrowingspace.com.au/library/
  1. Reports and preparation for reviews
  2. Funding
  3. Types of reviewsReview
  4. The review process
  5. How to get a review
  6. How to chase up a review or, When you need to go higher
  7. Plan expiry
  8. Random Stuff

Reports and preparation for reviews

  1. I’d like help with the format for making clear what would be helpful to ask for and why.

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)

  1. What do they ACTUALLY want to see??

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

  1. How much ahead should I prepare?

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.

  1. Which reports should I get ready?

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.

  1. Examples of how we should word needs and ways we can use 1 goal to work for 2 or 3 goals in one at the reviews 

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

  1. We provided paper and electronic copies of assorted reports at annual review, I also uploaded them in the portal. Yet I do not know if ANY of them were looked at and considered. I suspect they were, but….

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.

  1. Hubby’s review is coming up early next year. I’m scared that the funding he received that pays for his therapy, personal training etc will be cut (he will have used every last cent of it by the time his review is due). Apart from submitting reports from his therapists, what else can we do to try to get the same amount of funding for next year?

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!

  1. Can you explain the purpose of goals? I’ve heard people say things like ‘you can’t access house cleaning if it’s not in your goals to live in a clean house’. Is it really necessary to specify a goal like this, in my mind it should be assumed an adult pwd would want to live in a clean house???

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.

  1. Aside from therapist reports, who can provide evidence that the planner might consider? Eg, teachers, “mainstream” (not NDIA funded) mental health workers, sports coaches? Is there a link to a guide that will help them say what needs to be said in language NDIA will understand?

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!

  1. Also, Carer’s statements. Are they really worth the time and effort? I keep getting told to do one but I feel like I have to spend hours prepping to tell them everything verbally and have it completely ignored, why should I have to put it in writing?

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.

  1. Last question might be a bit niche but if your child is diagnosed with a second disability after entry to ndis, what is generally required to demonstrate this and have it make a difference to planning?

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.

  1. Can you insist on a face to face meeting for a review of a reviewable decision?

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)

  1. Can you ask for a specific planner to review the plan?

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.

  1. What should therapist reports include? 

Here’s a link to an awesome guide to therapist reports https://www.valid.org.au/10-steps-excellent-ndis-therapy-reports

  1. What assessments tools do they want to see that will make it easier to support higher level of support needs? (ASD Level 3 and Severe ID).

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.

Funding

  1. What if you, for some reason, couldn’t use the funds, can it be documented to show you you have attempted to or don’t have the services available to use them?

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.

  1. Happy with first plan…. how can you go about review to have a continuation of that level of funding?

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.

  1. How can you effectively request a plan that lasts longer than 12 months?

“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…

  1. If there is money left over at the end of a plan because you haven’t been able to access relevant therapies, is this detrimental to what you will get in the next plan? Will it be less?
    😉

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.

  1. I’m seeking a review of a reviewable decision due to severe cuts to funding. What can/should I be providing to help get what I want, considering it was all provided at the annual review and they ignored it?

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/

  1. How do I ask for a review where the support under an NDIS plan is less than the supports that I’m currently receiving, before transitioning? There is supposed to be no disadvantage to changing over.

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!

  1. Why did they reduce my sons funding?

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.

  1. My review question is how best to state that my daughter got $120,000 last year but only used $60,000 then received only $30,000 this plan but needs what was spent last year..namely $60,000.
    How best to achieve this?

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.

  1. ID like to know how they decide how much funding you get and how they decide which category?

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.

  1. Why do LACs and call centres say to spend whatever funds you need while waiting for a review of reviewable decision outcome? What happens if your review does not result in increased funding and you have spent a year’s funding in 6 months?
    1. Because they do not live with disability nor care for someone with disability.
    2. You’re stuffed. If it’s really life-threatening stuff though, the Agency will eventually come to the party, if you haven’t stroked out with stress in the meantime. Sorry. Bad form disability reference there. It’s late. I’m tired. I’m on my seventh of eleven pages of answering review related questions tonight.

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.

Types of reviews

  1. What’s the difference between change of circumstances review and the review of reviewable decision..

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.

  1. Yes, process of reviews how to do a review – what they are called and time period – for example what is a lite review – desktop review – review of reviewable decision – review based on circumstance changing 

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

  1. Hi Sam, any idea why Feros care are conducting the plan reviews?

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.

  1. I’m in a situation where I’ve grounds for both change of circumstances and internal review. Ie the plan wasn’t sufficient and things have changed. Is the process the same for both? Do both go to the same level of expertise to review? Is one quicker? Is one more thorough? Will one get a better result?

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.

  1. How does one do a “light touch review”? Through LAC or contact NDIS directly?

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.

  1. Steps to getting a review, types of reviews.

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

The review process

  1. How does the review actually work? Do you get to speak to someone directly to clarify what was in the plan/planning meeting? I believe a lot of our stuff was taken the wrong way. What about the items that were not included in the plan (assisted technology etc) do they just ignore what they don’t want. What about the OT reports that were included but the recommendations not followed? It’s so confusing? The amount we received didn’t even cover his current costs. Thank you 🙏

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.

  1. Can we see a draft of the plan before it is finalised please?

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!

  1. Can we request, do we have a right to view our plan before it is approved? If we have cuts/are denied things, do they have to list reasons?
    1. I WISH. (this is however, a feature of the “New participant pathway” so hopefully you will be able to, soon.)
    2. I reckon they do, if you ask for a review and are denied on review. But other here have been told differently. Sorry. The Agency is, at least, consistently inconsistent?.. (cocking my head to one side like a cavalier puppy)

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.

  1. If the Participant has a DSMIV ASD Diagnosis, is it true that if they get it reconfirmed under DSMV (with a severity level) they won’t have to go through all the functionality questions at each review?

Most probably. Usually. They are not 100% consistent about this.

  1. Can I still use the funds from my old plan even if/ until my new one comes in?

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.

  1. What should I should do if my review hasn’t come back and my old plan has expired? 

Sweat. And call, drop in and email, and then contact your MP if you need to.

  1. Are annual reviews done face to face with LAC? Why are plans done with LAC then passed to someone else to complete and sign off? Too much information gets lost in “chinese whisper” and or documents not read in their entirety.

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.

  1. Why do some participants find that asking a question on the telephone to NDIA ends in a review being processed, without the participant realising that this question equates to requesting a review. A review is then spat out and the participants only recourse then is to ask for an AAT review. The participant did not get the opportunity to provide any evidence/reports to back up what they were asking in the question, a review was simply processed and a letter issued advising of this with the next step AAT as section 100. If there was a better process in place, maybe the AAT’s time and advocates time may not be wasted if the initial question was not taken to be a review request and a review could actually have been done by NDIA. Crazy.

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!

  1. When should I hear from NDIA about my review? 

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!

  1. How do you know if the LAC has taken the necessary steps to trigger a review when requested.

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

  1. We didn’t get our review of a reviewable decision because my daughters new plan will be done on the 10th of dec, can I still make a complaint or will this be used in her new plan to help get the funds she needs this time.. (if that makes sense)

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.

  1. What paperwork should I receive after what I think was a RoRD interview?? I just received a new plan.

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.

  1. Who does the review of the reviewable decision?

An NDIS planner delegate who has “fresh eyes” for your plan.

How to get a review

  1. If you have an issue with your plan, what is the best way to let NDIS know.,?
    Visit the local office or phone or email?

Yes. All of the above.

 How to chase up a review or, When you need to go higher

  1. What rights do I have in choosing my planner?

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)

  1. What should I do if I haven’t heard from them?

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.

  1. I’m not happy with the outcome of my review. What can I do about it?

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.

  1. I think it might be helpful also to have a list of key precedents from AAT cases summarised with they key elements they got an outcome on in case people want to use these as part of their review application for justification.

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/

  1. My question is why was I taken off self managed for $7500 and put on plan managed for $4000 as cost of manager is $970?? Whom I can’t find either n have rang ndia asking for light review.. Got more forms spoke again ..still waiting..son has had no appt.or help for over a month now ..like we don’t have enough to do!! Single mum here with yr12 grad n 9 yrold help!!

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.

  1. A clear interpretation of the Review of Decisions Operational Guideline , specifically Sections 5.8, 5.9, 5.10. My interpretation is very different to the Planner’s they have advised that they do not have to provide written notice of the Review of Reviewable decision and they do not have to provide a statement of reasoning for the decision. Planner reviewed a plan made changes, verbally instructed the participant of the changes and declined the request to provide written notice statement with reasoning for the changes. Participant is not happy and does not have details of reasoning as planner spoke so fast details could not be documented. This is frequently happening in the Hunter one planner advised a colleague that they had received a directive not to acknowledge Review of a Reviewable decisions and to only put through unscheduled reviews.

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?

  1. This is what happened to me. I went to AAT for a review just to find that there was no paper trail and hence no decision made and could not pursue it any further through the system. I was left with another delay tactic which is to apply for another section 100 on the new plan.

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.

  1. I’ve had my review in the AAT and am now waiting for the NDIA to implement the decision of the court which must be done “as soon as practicable”. How long would it be for the NDIA to be in contempt of court? 

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)

Plan expiry

  1. What do they plan on doing about the “gap” especially when providers are refusing to provide services during the gap.

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.”

Random Stuff

  1. Why does it take so long to get an agency managed plan back to a self managed one when I requested self managed at the review?

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.

Nov 16 2018

Making the most of the NDIS – BRAINSTORM!

Reagan is 16, and autistic. He uses his behaviour to communicate and is just starting to use an Augmentative and Alternative Communication device (AAC). He’s into watching the same bits of videos many times and has probably watched the Stuart Little movie many thousand times.

The NDIS has been a pretty good thing for Reagan and his younger brother Declan, who also has autism. It’s funded some pretty intensive work with his AAC device, and they have a fabulous support worker, Indianna, who’s been with the family for years (she’s even written a picture book based on the boys, called Quirky Quentin).

The motorbike

Over the past year, Reagan has shown more and more interest in Garry’s motorbike, and had started going on the back for short rides with his Dad. It’s been a pretty awesome bonding experience for the pair, as Garry’s interest in watching Stuart Little with his son waned many years ago.

In May, Garry and I sat down to nut out some ideas on how to make the most of Reagan’s NDIS plan. Traditional therapies weren’t helping with hygiene, nor his chewing. We started talking about what were Reagan’s genuine interests. When did they know he was feeling really good? And how could we make the most of that to help him reach his goals?

The motorbike. It was when he was on the back of the motorbike, away from his house and his little brother, with his Dad, on the back of bike on the road, that yanked Reagan’s chain.

We can work with that, I said.

The big idea

The idea ballooned and grew into a month long trip across four states and a sea.

Garry grabbed the idea, built a plan, bought a trailer and some more safety gear and last week they launched ASD and a Kawasaki with Reagan and a bunch of their friends at a local pub. They’ve raised more than enough money to cover the costs of the trip (the rest is being donated to CountMeIn, a not-for-profit aimed at encouraging Universal Design in public spaces).

Meeting with his NDIS Plan Manager as well as his me, his Support Coordinator, we brainstormed further ideas about how Reagan’s NDIS plan could be used to support the trip and Reagan’s goals.

The NDIS

So, how does the NDIS fit in to all this?

  1. Without NDIS, Reagan’s goals would never have been so clearly defined.
  2. NDIS paid for a Support Coordinator, who Garry used to help him think of creative ways to meet Reagan’s goals.
  3. NDIS funds were used to purchase most of an Apple Watch with falls detection and GPS, so if the unthinkable happens and they come a cropper, emergency services will be notified within a few minutes, or if Reagan and Garry get separated at a petrol station, or accommodation, Garry will be able to track Reagan and find him (and Chrissa can track them both from home! Many thanks to Apple for a generous discount)
  4. Funds from the NDIS are paying some family friends, who are coming to meet them half way through the trip, to watch Reagan for a weekend to give Garry and Reagan a short break from each other.
  5. NDIS funds were used for Reagan’s speechie to add a whole bunch of trip related PECS (Picture Exchange Communication Systems) to his AAC device, and to help build some social stories about using new toilets and sleeping in a different place almost every night.
  6. Funds from his little brother’s NDIS plan will be used to support Declan and his Mum, so he is well supported and she can keep working while Garry is away.
  7. NDIS funds from Declan’s plan will be used for him to have a weekend at short term accommodation so Chrissa can come and meet Reagan and Garry along the trip (Chrissa is already missing her big boys so much!) 

Kicking goals

They’re only at day five, and Garry and I have been on the phone tonight. They’re tired – they crash early each night, and Garry forgot his pillow, which sounded like the worst thing that had happened so far!

Reagan is ALREADY KICKING GOALS. Just a few days in, and his hygiene goals are getting smashed. Garry, despite his sore butt and aching bones, was just beaming on the end of the phone.

It’s working Sam”, he said.

As Garry broadcast at the pub last week, just a few nights before their adventure began – “This just wouldn’t have been possible without the NDIS”.

Indeed. Well done Reagan, and his family, and the NDIS.

Sam Paior

Director, Support Coordinator and NDIS Specialist, The Growing Space 

Board Member, CountMeIn Foundation 

Disability Advocate

Solo Mum of two sons with NDIS Plans

Oct 27 2018

Assistive Technology Huge Ideas List

Many NDIS plans are now including around $1000, often in their core funding line. for low cost low risk assistive technology. These funds can be used to purchase lower cost items that don’t pose a safety risk. If you are self managing, or Plan Managed with a good Plan Manager, you could spend more if it is in line with your plan and helps you meet you goals etc.

The Growing Space posted some examples recently, and invited its followers to make suggestions of their own, and here they are!

None of these are recommendations from The Growing Space, and what is appropriate for each person with disability will be different. We also don’t want you to feel limited by this list – these are just *some* ideas!

We have included links to most items where possible, and you should know that if it’s an Amazon link, we might make a few cents if you decide to purchase. ALL income generated through these links will be used to contribute to our travel costs to take our workshops around the country.

Physical Assistance

• Large handled cutlery for someone with low muscle tone. OXO Easy Grip Flatware Set 

• ModiBodi undies for someone unable to manage tampons/pads. www.modibodi.com.au Modi bodi underwear has changed our world. Can not recommend enough.

• Magnetic charging cable for someone with physical disability to connect and charge their phone. Wsken Magnetic Micro USB Cable 
Self tipping kettle
• Amazon Echo Spot as an intercom and voice control for tonnes of stuff
• some form of google home for voice control when at home and stuck or needs help
• Elastic shoelaces for someone with poor fine motor control. Elastic No Tie Shoe Laces for Running and Triathlon – Black
• Carabiners to clip a dog leash to a wheelchair. Boundless Voyage 8pcs Outdoor Aluminum D Ring Keychain Camping Carabiners Locking Hook Clip Hanging Buckle 5 Colors BV1010
Stick vacuum cleaner for someone unable to carry/push a regular vacuum.
• Key turner to help someone open their own doors. Key Turner – White – 1 Key – Key Turner – Living Aids Gripping Aids
• Hose reel that retracts for someone unable to manage it otherwise. Flopro – Flopro + Auto Retract Hose Reel 15m
Electric timer toothbrush for someone to brush teeth and know how long to go for.
• Single use plastic straws
Stainless steel straw set with brush
• To clean your own straws or peg feeding tubes- you can use heavy whipper snipper line– you’ll get longer use of tubing as you can clean it better. Light whipper snipper line isn’t really strong enough to clean with.
Autobrush for teethbrushing  – from another co-ordinator “He found it very odd at first with all the vibrating, but very easy. His mum does need to give his teeth a good clean with an electric brush once a week to prevent plaque build up and it doesn’t clean as well as a toothbrush does but it’s a lot less physical exertion and creates independence for the young man.”
Flexible iPad/tablet/phone holder• New padding for WC arm rests
Pencil grips
• Non slip mat for eating. https://ezpzfun.com.au/ Ezpz Happy Mat (Pewter)
• plates and bowls with suction bottoms so they don’t move, and also have high sides to help getting food onto fork
• Smart speaker and lighting that is voice activated to switch lights on off etc LIFX Mini White (E27) Wi-Fi Smart LED Light Bulb, dimmable, Warm White, no hub Required, Works with Alexa, Apple HomeKit and The Google Assistant • Smart lights so I can turn the lounge room light on/off from my bed. I have also programmed it to turn on at sunset each day
Drink holder and bag holder for my wheelchair
Rubber tips for walking stick
• A family toilet seat for my 10yo who struggles with a regular sized seat due to muscle tone issues. The smaller seat is held against the lid with magnets when we need to use the regular sized seat. Just from Bunnings
Handibar to help her get out of car.

• adjustable sitting/standing desk Height Adjustable Standing Desk Frame Sit Stand Motorise Electric Table
• Door handle cover that helps with turning
• Special little shoe laces holders to help sustain the tie all day long. Got them from athletes foot for about $13 and were claimable
• Swim Fin back float for kids with a range of needs who need a bit of extra support/floatation in the water but prefer something that looks cool instead of a toddler back float (they look like shark fins in funky colours) 🙂
shower sandal also from Think mobility, it is good for cleaning feet in the shower.
• bright blue walking stick – http://www.switch-sticks.com.au/ (red) – Amazing Health Flower Folding Walking Stick Height Adjustable with Wood handle, wrist strap and Extra Free rubber ferrule
• This. I can shuffle my bum forward in my wheelchair and using this, wee into the toilet. I do have a long extension tube attached. Fabulous. There are cheap versions available but they are not nearly as good nor do they last long. It’s a bit tricky at first but I love my Whiz. Read the instructions!  Whiz Freedom Female Urinary Device Whiz Freedom Feminine Funnel
• One Touch battery operated can, jar and bottle openers NEW TOUCH AND GO ELECTRIC CAN OPENER Battery Electric Automatic GREEN
• non slip mats for benches, cars etc
• This is really helpful for opening jars – BRIX Jar Opener – Jar Key Jarkey Easy Bottle Top Cap Pop Lid Grip Twist Remover Red
• Food grade clear vinyl tubing (from e.g. bunnings) can be cut and used for people with e.g. spinal injuries do drink from cups. It’s also easier to drink thicker consistency fluids, and it’s reusable.
• Playing card holder Maxi Playing Card Holder

Cognitive Support

Visual cookbook for someone with ID
• laminating sheets & velcro dots for visual schedules Vkey 1000pcs (500 Pair Sets) 20mm Diameter Sticky Back Coins Hook & Loop Fasteners Self Adhesive Dots Tapes White
Electric timer toothbrush for someone cognitively unable to know the right time to brush teeth.
• Talking clock
• Pictello app to make social stories
• voice to text software

• Time timer https://www.timetimer.com/collections/all

• Watch with multiple alarms for toilet reminders
• The app ‘Book Creator’ for iPad $7.99 is AMAZING as you can make the most wonderful social stories. I’ve just used it to put together something for my daughter for camp. It is a social story, itinerary and she can add to it and use to make it into a camp journal. I’ve set all the pages up but she can add more herself. I’ve included positive messages, information I want her to know, some reminders and some kids jokes to make it fun
• Cpen C-Pen ReaderPen
• KNFB reader works really well to scan anything, than it will read it up.
PrizmoGo app allows you to take a photo of printed text and will read it to you
Smart lights so I can turn the lounge room light on/off from my bed. I have also programmed it to turn on at sunset each day
RM Big-Point – Talking Point Ideal for speaking and listening, records and plays back 30 seconds of sound. https://www.speld-sa.org.au/shop/assistive-technology/product/rm-big-point-talking-point.html
Bookshare – Membership costs $50 US. Great for building reading skills as you can down load from 10000’s of books and set device to highlight scan and read text, font size, colour of page, text and more.
• big keys keyboard

Organisational/Memory help

• Waterproof electronic digital timer for prompts to get out of the shower for someone with memory loss.
Apple Watch for organisational management for someone with intellectual disability.
ShowMeImages pack of Australian pecs style icons to make visual schedules for home someone with autism.
Pictello app to make social stories
• Great for making cue cards, social stories, educational resources. https://www.twinkl.co.uk/
• This site is great for making social stories https://www.sandbox-learning.com/RunScript.asp?page=37…\~PgDefault.asp – all you have to do is enter your child’s details. You can even edit how the main character looks, so they look like your child.
NutTag Bluetooth tracker for wallet, keys, work bag etc for someone with memory loss. Our Tiles need replacing and Nuttag look like they might be a better- It’s supposed to be louder and have further range and changeable batteries than tile Nut 3 Mini Smart Tag GPS Tracker Bluetooth Anti-lost Alarm Key Finder Locator
• Dawn Clock Talking Day Clock 8″ Large Display with Touchscreen Digital Calendar with Date and Time, 8 Alarms, Manual Dim
Watchminder3 it allows for many customised reminders with vibration not sound. I’ve just ordered it. Aim is to help prompt me when to eat, drink, take meds, appointments and other things to build a more consistent routine as I have trouble remembering or changing tasks.
• Watch with multiple alarms for toilet reminders – Wobl watch cheapest place was Amazon Au WobL Waterproof Vibrating Reminder Watch 
• Vibro watches https://www.aleva.com.au/malem-vibrating-watches great for kids who have trouble realising when they need to go to the toilet. Can be set to vibrate e.g. every couple of hours
• Child’s ‘time timer watch’ – this has been fantastic for my daughter! C uses it mainly for transitions.. helps keep her stress down.. so if she has ten minutes till we leave for school, she will set her watch and it beep when time is up. When she looks at it, it’s visual (red circle) can see within a second how much time is left. The other function is just a general watch which she uses at school

Communication help

ShowMeImages pack of Australian pecs style icons to make visual schedules for home someone with autism.
Proloquo2Go for communication

Sensory help

• Talking clock MagiDeal Digital Alarm Clock Talking Snooze Function with Time/ Date/Temperature Display
www.modibodi.com.au
• Zip sheets for my son who struggles with a top sheet. There is an amount of ‘pressure’ which is calming too 👍https://kidszipsheets.com.au
• Chewellery to avoid hand chewing Sensory Chew Brick Necklace (3-Pack) – Chewelry for Boys & Girls with Autism ADHD Oral Motor Chewing Biting Teething Needs – Chewable Jewelry for Kids by Solace
• We just bought a small vibrating cushion which helps with concentration and fidgeting while doing tabletop tasks. And we always have a stick of chewy tubes and pendants- ha! Senseez Calming Cushion for Kids – Blue Square
• Noise cancelling Bluetooth headphones. With or without having music on it makes being in busy areas such as shopping centres, malls, buses much more bearable. The Bose ones have a Google assistant button Bose QuietComfort 35 (Series II) Wireless Headphones, Noise Cancelling – Black
Jettproof singlets. Great for anxiety and general calming so you can search for stuff via voice command.
• I got my son Lycra sheet last week, has been working well to help him settle and sleep at night

• Smart lights so I can turn the lounge room light on/off from my bed. I have also programmed it to turn on at sunset each day
Wonsie’ suits – like a all in one suit that zips up at the back. These have been great for my son who used to frequently strip naked in public. 😬

Continence Support

• Brolly sheets – they are brilliant. Save so much washing and re-making beds! Brolly Sheets Single Mattress Protector Lime
Conni products – huge range of adults and kids stuff – Australian

owned and they actually work!
• Hospital grade mattress protectors https://www.aleva.com.au/easywipe.html – they make life sooo much easier. Just have to wipe them over with some soap and water. They are also really soft and PVC free.
Wonsie’ suits – like a all in one suit that zips up at the back. These have been great for my son who used to frequently strip naked in public. 😬
• paying for a second council general rubbish bin to accommodate incontinence products
• Conni swim shorts Conni Togglz Children Swim Pant, Blue, 14-16, 210ml

 

Vision/hearing help

• Fluoro coloured knives for someone with vision impairment and black kitchen benches. GA Homefavor 10-piece Colored Chef Knife Set with Blade Guards 
TextHear app subscription for a deaf lady wanting live captioning for private conversations
Telecoil headphones
• bed shaker alarm clock Sonic Bomb Alarm Clock
• visual smoke alarm
Wireless video doorbell with loud sounds and flashing light; landline phone with loud ring and large dial numbers; waterproof accessories for cochlear implants; Roger pen to assist in listening to conversations in loud environments, eg. dining out.
• voice to text software
C-Pen ReaderPen
• there is a small camera that attaches to glasses called an Orcam. I have two peeps with it and it’s great but…. like all awesome things there are pros and cons and this is over $6k so not considered low cost low risk and NDIS are really only approving about 50% of applications for this. It’s bloody brilliant tho!
• Be My Eyes app. Free. https://www.bemyeyes.com
KNFB reader works really well to scan anything, than it will read it up.
PrizmoGo app allows you to take a photo of printed text and will read it to you
• Braille paper Filler Paper for Braille Pocket Notebook

Supervision help

• Video monitoring
MedicAlert
Fall alert button/lanyard
• Electronic video doorbell Wireless Video Doorbell
• Electronic door lock Decdeal 4-in-1 Keypad Lock Unlocked by Password + RF Card + Remote Control + Mechanical Key (Silver)

 

This post is copyright of The Growing Space, October 2018

Oct 20 2018

Top 10 NDIS Rookie Questions, answered!

(subscription info at the bottom)

  1. What’s the difference between a Plan Manager, Planner, Support Coordinator and LAC?No automatic alt text available.

Local Area Co-ordinator (LAC): Someone who works for a company contracted/partnered by the NDIS to a) help collect info to put together an individual plan for the participant which will be submitted to the NDIS for approval b) help you (participant) implement your plan/find providers etc and c) works with your local community to help…https://www.thegrowingspace.com.au/ndis-gobbledegook-all-sorted-v2 (FREE)

  1. Should I choose Self, Plan or Agency managed?

There are several ways you can deal with the money side of things with the NDIS, and if the way you have chosen isn’t working for you, or you need more support, you can…https://www.thegrowingspace.com.au/managing-the-money-in-your-ndis-plan (FREE)

and

Check out this super neat table we drew up. I’m kinda proud of it, because we get loads of questions about this, and wanted a way to show the basic info in a way that actually compares the options side by side. You can download…https://www.thegrowingspace.com.au/money-management-compared-in-a-table  (PAID SUBSCRIBER ONLY)

  1. I got my letter saying I’m eligible – how long until my planning meeting? AND I’ve had my planning meeting – how long ‘til I get my plan?

How long is a piece of string? Sorry. Wish I had a better answer for you. Some people are waiting 18 months for their first planning meeting after they’ve been approved.

Waiting for your Plan after your planning meeting with the NDIS or an LAC can take one day, or up to four months or even more. A 6-12 week wait is not unusual, I’m afraid.

  1. I’ve got my plan in the mail, what now?

When I first get my NDIS plan in the mail, what do I *need* to check to make sure it’s ok? First, check that your name is spelled correctly, take note of the dates and how long the plan lasts for, and that your NDIS goals are accurate… https://www.thegrowingspace.com.au/got-my-ndis-plan-what-now-2/ (PAID SUBSCRIBER ONLY)

 

  1. My mobility Allowance from Centrelink stopped, but I haven’t got an NDIS plan yet. What does that mean?

It probably/usually means that your NDIS plan has been approved, but no-one has called you yet, and you haven’t yet received a copy in the mail. If you have already got yourself access to the NDIS MyPlace portal, login and you might just be surprised to find a plan. The paper plan usually comes a week or two later in the post. Usually.

  1. How to choose a Plan Manager

How to choose a Plan Manager? (a handy list of questions are further down the post).  Word of mouth is a great place to start – ask around. You can find a list of registered Plan Managers at…https://www.thegrowingspace.com.au/how-to-choose-a-plan-manager (PAID SUBSCRIBER ONLY)

  1. There’s stuff missing from my plan – who do I talk to?

If your plan is missing needed transport, or the equipment you need to get quotes for, or funds i to maintain your existing equipment or even SLES funding for some school leavers, they may be able to  be fixed without the wait for a full review – ask for a “soft/light touch review” as soon as you can if they’ve made clear errors or omissions. Call your LAC or the NDIS directly, and follow up with an email request if you’re able.

  1. Who can help me understand my plan?

It can be quite overwhelming when you get your first NDIS Plan. You are not alone! NDIS Plans use words that are unfamiliar, and sometimes don’t make much sense, and many people have no idea what their Plan means, what they can purchase with their funds…https://www.thegrowingspace.com.au/ways-to-put-your-ndis-plan-into-action-how-to-get-help-to-get-started/ (FREE)

  1. How do I use my Core funds?

Core funds are meant to be used for the sorts of help and stuff you use everyday. Everyone will use their Core funds in different ways. The money in your “core” fund “buckets” is flexible, and you can mix up how much you use from these categories below, except…https://www.thegrowingspace.com.au/how-to-use-my-core-funds (PAID SUBSCRIBER ONLY)

  1. My providers are asking for a copy of my plan. Should I give it to them?

Do I *have* to give a copy of my plan to a provider? Simply. Generally. No. But, if your plan is Agency Managed, your provider will NEED your NDIS number and plan dates, as well as a copy of your GOALS, because they are obliged to report against those goals to the NDIS. Do…https://www.thegrowingspace.com.au/sharing-your-plan/  (PAID SUBSCRIBER ONLY)

 

Anything says “FREE” at the link means you need to subscribe, but that’s free – just click on the link and choose “Join us”. If you want to read the “PAID SUBSCRIBER ONLY” stuff, it’s $99 for disabled people and unpaid carers to access ALL our stuff for a year, and that cost can generally be claimed from Self and Plan Managed plans from your Core funds as “Assistance to Manage the plan” – after you subscribe, check your junk mail for registration info. Paid subscriptions help us be able to keep writing and sharing easy to understand, no bull, information about the NDIS for participants and unpaid carers.

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