disability equipment funding issues

i had a call from the OT this week, i think i disapointed her with my response to her call!- she rang to tell me that the bed had been ordered and just when i was getting excited to then added that it would be delivered arround may 26th! so thats may 6th for the chair and another couple of weeks later fr the bed! while i am certainly pleased to have a date to aim for and the knowledge that hopefully things will be better in a few weeks- i am still not happy with the time frame- she responded that the bed had a 6 week delivery time on it- that means the order had been placed a few days before she called me - we had actually been to theshowrrom to test the bed back in early march- all this time had been time it took for the dperatment toprocess the ot's report and apparently they had asked some more questions. My point is still that that is unacceptably slow!

when i had lodged a complaint with the depratment back in early march before when went to test the bed in the showroom, i had been told that both the bed and chair had been approved so that it meant the situation would be fixed- she said their was no funding waits at present, that again implies that it should not take long to get the equipment required once an OT has precribed it. So i have been back in contact with her again, especially with the disaster over easter when the temporary loan recliner broke down and i had to sleep in my wheelchair all weekend- the only other option was to go to the emergency department, tell my sotry and ask for admission on the grounds of not being able to manage at home! I also raised the fact that now i am concerend that as my electric wheelchair is a good 8 yrs old, i am concerned that if that suddednly failed and they deemed it non repairable as they had my recliner- if i took the example of seeking a bed and a chair, i could be waiting for a minimum of 6-12 months, yet without the power chair i would be completely housebound and would struggle - i can't even make it to the letter box and back! She could give no reassurance that i would not have the same issues.

one of the m ajor problems is that they do not do any regular checks on equipment and no regular preventitive maintainance, it is purely a case of witing for a breakdown and then calling maintainance, ther is also no plan for replacement. so basically its like someone buying a car, then doing no maintainace, not keeping money aside to buy the next and then hoping for the best. She did say that if a client asked for a maintainace check as a piece aged, it would be done but that would still not have them considering when the piece needed to be replaced- she said that that would cost too much- well the only way they save money by omitting this kind of forward planning is by sentancing a person to months without essential equipment, i told her of a tale of a friend of mine who was born with spina bifida, she is reliant on a power chair, the seating on the chair is customized for her recently it broke down - they took it to the workshop and it seems that the computer component needed to go to sydeny for work so she was stuck in bed for a week til the chair cam back - she tells me that she has been without a chair for a couple of weeks or more!

anyway, the lady listened to me, she could not give any assurqances but she asked how serious i was about my views and if i would like to be considered as a client rep on a panle looking at these kinds of issues-i jumped at the oppurtunity. i am not niave enought o think i can get things changed but til now i havebeen told, that things will be better with the NDIS and i do not believe that- changing the name on the funding program will not magically change how it works and sadly based on my experience in the past 5 yrs in particular- they just seems to be an increasing acceptance that there will be delays for even basica equipment and personal care. I told her that one of the reasons i get really steamed is that i have been frustrated, angry and depressed by the problems with equipment but at least i am capable of voicing my concerns and complaints but i have met many other people with disabilities that either cannot easily ring up and make a complaint due to the nature of the disability or they are scared to make waves in case they lose what they have! and for many who came up through the more istitutionalized care those are strong fears- anyway she is going toput my name forward - maybe, just maybe i can help improve things a little by voicing my eperiece as a client of the service

Kebsa you go for it lady, this will be one good part that has come from your struggles getting equipment, all the ones without a voice needs someone to stick up for them and I reckon you would be an asset and a strong voice for their rights.
Sadly you still have to struggle, every department in this government is bogged down with red tape and double handling, police are a fine example, we have the most per capita and yet you hardly ever see a patrol car or them walking the beat.
May is not far away, but when your are desperate it seems like a lifetime, apart from the discomfort of having to sleep in a chair, how you cope is amazing.

Don

Kebsa,

I second everything Don said...you are one awesome, inspiring lady!

I'm so sorry that you've had to go through what you you're still going through, but boy do you have one hell of a firsthand story to voice on that panel.

It's the same with work cover. It actually is quicker for a broken car to get assessed and fixed than a person in pain waiting for treatment! The car feels nothing; the person does...it's in humane and immoral.

I do hope some miracle will intervene though so you can get your equipment sooner.

Super big hugs,
Fee

thankyou guys!!

I certainly am glad to know that soon this wait will be over and if something good comes out of this, in that i can be just one more voice to help try to keep the system on track, that will almost be worth it- it is horrendous to think that the system is so bad that unless you can yell scream, jump up and down and hold your breathe til you go blue! that you don't get any action. When i left school i was a very tmid girl , scared of my own shadow and to some degree that is still the real me- but wheni started nursing i realised that my patients relied on me to be their voice at times so i learnt to advocate for others-it has taken longer to get used to the idea of being my own advocate but i am getting there!

sadly one of the down sides to de institutional care is that you have many very dependant and vlnerable folks out in te community who often cannot advocate for themselves and if their support comes from a group home with paid carers, no family and the carers tend to move around a lot due to low wages etc- then there are a lot of people who have no real choice but to wait and wait or perhaps end up in an acute bed in hospital as we have seen recently on the news here in SA ( at least 2 cases where people were stuck in hospital for months because they could not get the required funding for care in the community- it did get approved when the media got involved though. If myself and others who are able to voice concerns about the way things are working have a chance to get involved i think we have an obligation really- otherwise things will get worse wether they chnage the name of the system and call it NDIS or not- a name is just a name after all.

i guess one thing that has sadddend me is that acting the part of patient advocate is a central role for nurses, its just accepted that that is part of the job but what i am finding these days when i deal with the various employees of disability sa and related services, the attitude seems to be different. Even my case manager who is supportive has said that he cannot go as far as actively advocating for me as he is an employee of the department and therefore an agent of that department first and foremost! He has been good enough to at least give encouragement, point me in certain direction etc while others i have encountered will say nthing negative about the process and delays in getting services even when they know that it puts clients in jeopardy- that is so sad. It really is not that hard to be true to both roles after all the goal is to make things work better and correct deficits. deficits cannot be fixed unless those that see them point them out- this part of should be simple but i guess the powers that be do not want to have to aknowledge a list of deficits that they may not be able to fix in the short term, especially in an election year for federal funding issues

anyway they are going to have one noisy little thorn in their sides if i can get on the panel and i certainly do not need to feel the need to protect th department at the expense of the clients

As you know we work closely with Disabilities SA and some of the case workers are very good and understand what a lot of disabled people have to go through, ours has given us a lot of useful information on who and how to contact the powers to be, all out of working hours as she is not aloud to to convey it, their hands are tied in a lot of circumstances and risk losing their jobs, they have been told from higher up not to get involved.
I can't see NDIS being any different from the current scheme, in fact quite a few don't even qualify for assistance, and you will still have overpaid bureaucrats running the system, and shared services which will entail a lot of duplication and endless forms before anything gets done.

Don

That's a funny statement from your case manager kebsa. I would have thought that he is there to advocate for you. I know that my cousin's case manager is a wonderful advocate for him. It's a pity that the system isn't consistent. If your case manager can't advocate for you, then that really leaves you out in the cold so to speak!

I sure hope that you can get on the panel and stir things up. Good luck.

Mary

i think initially the concept was for more open advocacy but grappers description is pretty much what i have experienced- my case manager has been good- in that he has listened to my concerns and has given me feedback about the ways to get heard rather than just seen as a whinge but they do risk putting their own jobs at risk it if they rock the baot too much- i think things changed when the ublic sector jobs moved from being fairly safe employment where it was almost unheard of to be sacked to the current system where nearly all jobs are short term contracts from 3 to 12 months- if a person makes too many waves they are not likely to get a contract renewed! i guess thats anotherexample of the extremes of a pendlum swing. the old system where jobs were basically set for life in the public sector did mean that "deadwood" could accumulate but it also meant that a person did not have to worry about losing their job if they voiced out in support of a client eetc- i certainly had that safety, i could damage my prospects for advancing but i could not get sacked for speaking out- now they don't so much get sacked, just not renewed when the contracts go out again. even if that only happens occasionally the fear that it will is real when people are on contracts and get almost no indication til the last 4 weeks as to what the future will be- i guees its natural for folks to have to think about how to pay the rent as a first priority

ts just really sad that the powers that be can't understand that ultimately having deficits identified to fix a clients issue ultimately improves the whole system rather than just sweeping the problems under the rug like the present situation

grappers, you and i have the sameview on the NDIS, when i was at the social inclusion committe meeting of my local council recently one of the other reps is from disability SA and he was speaking to someone else from another government department and they were patting themselves on the back over getting approval for a trial involving children in this state as part of the NDIS. One of the things they mentioned was how important it was to get the eligibility criteria set so that only the correct groups of individuals are accepted and the speach sounded like they were thinking diagnosis related as is the current system- i bit my tongue at that meeting but will not infutre and if i get onto this other advisory committeei certainly will be saying my piece- there are many conditions that take a long time to get a formal diagnosis, they are diagnsed by exclusion - and without the label at the moment you do not qualify for help- eventually you may be lucky and get very basic support from dom care but that is far less than the disability systom - and at present having intractable chronic pain being an amputee and being wheelchair dependant because of these does not acutally meet the eligibilty criteria- my situation miproved when i was diagnosed with MS- my function had not altered at that stage as i had had the MS issues without the firm diagnosis, but as soon as i had that lable i was transfered to disability sa. they just did not have funding to help but idid qualify. Well i know that most of we consumers want to see that change- it should be based on a person functional capacity, what you can or cannot physically manage and what help you need- thelable should not matter.At present i cannot see the scheme being any different in the forseable future
the other thing i will be pushing strongly for is some kind of regualr maintainace not just crisis care when something fails- and planned replacement for equipment as it ages and fails that would save things like having no bed for over a yr and nosuitable seating other than the wheelchair for over 6 months. the system is no use if it canot be more responsive. i will not be holding my breath but i certainly will not be shutting up if they just do some minor tinkering and then relable the current mess

Kebsa I can't see them holding any sort of equipment in reserve in the case of breakdowns, a lot of this equipment is tailored to suit an individual, and it will be a case when and if it breaks down then they will look at it which then poses the problem of getting quotes for repair or replacement. If they are going to follow on following the current system, all jobs and placements are tendered out, this alone is a six month or longer process just to make a decision, then the time to actually act.

Don

i understand what you are saying especially since my recliner is a good example, that was customade for me but one of the reason this has taken so long is that they do not like to customize those- they moved to using a pre made brand that is an american brand that comes in a variety of sizes supposedly so that equipment could be more easily replaced but also so that it could be more easily re used for a different client if a person no longer needed it- that was a great idea and sounded like i would be more fexible and better use of funds - instead it has meant if you cannot use one of the more standard items they stock, you will face long delays as even when the OT has made a prescription detailing why its needed- there is still red tape to go through for the non standard request- the simple fact is that as you said, most equipment for people with disabiities needs some customization- we are not standard people!

my manual wheelchair is customized but it is a lightweight wheelchair as i used to have to be able to drag it in and out of a car - now that i no longer drive, the next chair would be a more standard cheaper chair-even if they were to replace a light weight customize chair with a more standard clunker- it would not suit every one but would be a reasonable short term option for many- preferable to be stuck in bed for a few days

for customized equipment they do not use the tender system, they may have sued that to work out the items they keep as stock (such as the recliners i mentioned- its a prescription process instead that is done by an OT, the OT des not work for the deparment they have a list of organisations they work with such as MS society but they have to wait til funding is approved for the OT assessment and while that is usally only a week or some i had one occassion when the housing trust moved me to this new address that we had to wit for 4 months for funding to be approved before the OT could come out and mark where the hand rails needed to be plaed in the bathroom- in that case i moved in and had to manage without the hand rails for 4 months! Once a prescription si done by the OT it then goes for approval. If they say there is no wait list for equipment funding (which is what i have been told a present) then they should be able to process a prescription request in a reasonable period of time- not over 12 months for a bed, 2 yrs for a shower chair (the wheelchair type) or 6 months for the recliner- these are all times i had had o wait in the last 5 yrs. - when i bought my own customized lightweight wheelchair chair some yrs back - from prescription to delivery was about 6 weeks the only difference was that there was no disabilitySA or dom care involved, i did it all privately but i can't afford to do that these days.

i accept that when it comes to spending public money here is more accountability so there will always be red tape and i guess for me that makes it all the more important that once a person is known to require an item such as an electric wheelchair or customized manual wheelchair, hospital type bed- they really do need to have regular checks on that equipment - minimum of once a yr or perhaps 6 months- that way they would hopefully pick up signs of wear and tear and then can plan for replacement. instead of waiting til an item fails completely then deciding if it can be fixed and then if not start thinking of a replacement- thats too slow and unacceptable.

if my electric wheelchair were to breakdown and be deemed to be non repairable- i would not have a replacement for months. I really struggle to use a manual chair these days and certainly can only manage inside the house- not even down to the mailbox or out the back yard. i would have no one to do my shopping and would struggle to manage in the kitchen all things i currently do myself so would not have enough care hours to extend to those tasks. Then there are things like getting to medical appoints etc- i would need help for that. I am also about to start a part time job again - one day per week. without my electric chair i would not be able to work- not many employers would tolerate an employee saying they could not come to work for the foreseeable future because of equipment failures and its would be the sort of thing that actually puts employers off from taking the chance of employing a person with disabilities.

when i first had an electric wheelchair 12 yrs ago, they did do some preventative maintenance, and replacement equipment did not take so long to get- it really is the last 5 yrs that i have seen a decline and its still getting worse one last thing is beer communication- i gave the example of 2 yrs to get a new shower chair the old one as powder coated aluminium and was rusting through round where the front wheels fitted so it was placed as an urgent request on safety grounds- the OT did a prescription and then nothing happened- after 6 months i phoned and was told it was on back order- this implied it would not be long but each month would pass with the same comment after 18 months i was really concerned about the rust on the old one getting wrose so i was concerned the wheel may break off- i queried how something could be o back order for over 12 months- was this a new way of saying waiting list and no funds- i was told that no, it was because my OT had prescribed a height that was a non standard height and would have to be customized otherwise each delivery would be the same, my prescription would not match the stock they have. I asked what the height difference was and was told the stock items were 2cm higher and i also asked if anyone had contacted the OT about his and i was told no, i made the suggstion that i thought the 2cm height difference would not matter too much but that perhaps they could ask the OT- i then contact the OT as well and she suggested a trial with the stock item- i had the new shower chair in a couple of weeks-basically no one has custom built shower chairs, they tend to be adjustable at best the ot has list the height so they could set any adjustments as close to that height as possible.

the was the first time i had ever had a major issue with getting equipment, and i had thought it would be a once of as it was such a laughable problem that had caused the delay but sadly, for different reasons, every request for equipment since then has been a nightmare. If things don't change and i was faced with a lengthy delay when my electric wheelcahir needs replacement i think i would have no option but to go to A& E and say i can't manage and become a bed blocker wasting an acute bed. I really do hope if they listen to clients on feedback panels that regardless of what they call the system, it can be streamlined a bit at least. at resent if they do little more than call it the NDIS al they are doing is rearranging deck chairs on the titanic!

Kebsa did you read yesterdays paper, our new health minister was hinting there will be cuts to the health budget again in this coming budget and one area to be effected is disability services here is the link
http://www.adelaidenow.com.au/news/south-australia/states-health-budget-threatens-to-swallow-up-other-critical-areas/story-e6frea83-1226620987305

i did see it and my neurologist told me he had a friend"in the know" that told him there had been massive budget blowout in health and that it was going to be clawed back by budget cuts- i did tell me the rough figure but i can't remember. I would like to think that the idea f the NDIS will improve things but i am very very suspicious! i will be happy to be proven a worry wart but my thoughts are that when i went to the NDIS site and read the comments that people had left when they voiced what they were expecting from a revamped disability support system- the expectations go well above the basic personal care and equipment, they talk about being able to travel and all sorts of otherrecreational persuits, the avergae perso takes for granted. but to be honest i can't imagine a government funded ystem ever going beyond what is absolutely necessary! if they did provide and expanded support system they would have to severely restric the number of peoplewho could access the funds

once again usin my examples of
18months- to get personal care,
2 yrs to get a new mobile shower chair
18months approx to get a bed
approx 6 months to get a recliner replaced

none of these requests had been quibbled, i was just it takes time for them to process the requests and then to find the money but it you mutiple this kind of list of needs to most of the people nder the disability support system, we are ralking about very large amounts of money indeed! Now unless they have one some huge lottery win, where are they suddenly oing to access enough funds so that these kinds of waits are gone in the near future. it would take a massive injectiono of funds. that can only happen if they can somehowre reduce of lot f the admin costs so more of the money actually gets to the clients (thats not likely!). The only other option would be increased taxes, orperhaps since they came up with the name "national disability insurance scheme" perhaps they would introduce something similar to the medicare levy so that all taxpayers are paying a premium for the NDIS- that would be an election killer instantly for nay party! As much as the average personmay feel for a disbled person who can only get funding for 2 showers per week, hat sympathy would not extend to paying out more in taxes- So i ca't see any way they can fund this wonderful new system

i am still more than happy to have a chance to put my 2 cents worth in on a client panel because i don't want them to beable to do things like mess with the eligibility criteria- they have already said it would not include people who becaume disabled when they were 65 or older they would come under the aged care system. there is also intereting wording about the scheme being required to meet the "reasonable and necessary" needs of the client. I can see someinteresting wiggle room around what is demed reasonable for starters!

there is talk about fous on early intervention which implies eliminating the kind of waiting times i have expereiced and that is great but i know i have been told they are doing the absolute best they can at the moment and i believe the person who told me that was being sincere- i need them to tel me how they plan to change this clunky and inadequate system for this wonderful nirvana called the NDIS (although they have already changed the name to Disability Care Australia to the annoyance of many of the clients(they object to the term "care" saying its patronizing and still implies dependence))

i guess i hopewe might be able to get some small improvements, or at very least try to ensure they don't make thesystem any more unmanagable that it currently is by playin with definitions of eligibility. they love using specific diagnosis as eligibility but sadly there are many situations even with newborns where it is very evident there is a real issue but there is no clear diagnosis. I know of people wit conditions like Lupusand MS who have been in limbo for up to a decade. lpus can be particularly tough to get a firm diagnosis. ihave told you before that when my official diagnossi was being an amputee and having chronic pain syndrome, sever chronic back pain spinal stenosis- none of thos actually qualified me for support through disability SA, i was a dom care client but i did not actually meet there criteria eiher- chronic pain is a symptom not a diagnosis to who ever set up the criteria. I had symptoms of MS for some time before i was diagnosed but it was only when i as officially diagnosed that i actually qualified for support through disability SA- with dom care i would never have recived daily personal care it would have been twice per week max and that is usually reserved for the elderly. I have already hear people from disability SA talking about the new system and eligibility abd insisting it need to be based on certain diagnosis- they beleive its less subjective that way and can't see that clear diagnosis is not always possible, babes with congenital problems are the classic, sometimes it can be random gene mutation that only affects a handful of kids so ther is no diagnosis

so i want to be able to question al thes stupid road blocks to support that we users have dealt with. if i am wrong and somehow they magicaly are able to establish the NDIS(or what ever they call it i want them to please explain why we have dealt with such an inept system if they managed to fix it so easily

Kebsa an update in today's paper from the premier he has committed to the NDIS and expects it to be fully running by 2018-19 extending the benefits to 33,000 people with budget of 1.4 billion dollars, still no word on who qualifies and who does not, and I have to ask where the money is going to come from.

Don

i have been watching the NDIS?disability care subject closely but even when you got to the federal government site media releases, the storeis have very little substance or detail in them. jus confirmation of dates and when roll outs should be complete. even this is odd because about a month ago SA had bee approved as one of the trial sites, focusing on kids with disabillity. now trial implies that they want to see if it will work or not. yet now without even starting the trial, they have a roll out of the new scheme, its no longer a trial

they talk of getting rid of the lottery like system where what help you get depends on where you live, but in my experience it alos depnds on what label they place on your disability. when i first read comments like his i thought hat perhaps for once an for all they would actually focus on the person abilities/disabilites and fucional level, rather than wheter they have a specif diagnosis from a list of accepted diagnosis. Bu i have already started to worry after hearing some dsiability SA employees talking about the "trial" but they were saying it was important to clarify thos eligibility criteria, so that only those who really qualify actually get access. Now that sounds more like making things tighter, and trying to exclude more.

one thing that comes to mind, is that the paraolympics is one organsation that has had to try to look at all individuals on a even footing- they assess based purely on functional level not specific diagnosis= it seems to work ok for them, i have never hear a peson complaining that they have been wronly catagorized but the will neve do it, its second nature to try to limit the number of people wo may qualifyfor a service or payment

on the NDIS page there was a "have your say" forum, that has been closed now and the comments removed, but it is possible to find access to some of the comments. and it made me sad. peoples expectations on this NDIS are really high and i am reallyafraid there will be a ot of disappointed folk. its not hard to imagine that something as simple as taking a weekend trip away is out of the question for most disabled. i would love to go to melbourne and see the play warhore. bu even if i manged eiher a train or air travel, where would i find a hotel with and elctric adjustable bed. i would have to take my shower chair, the elctric chair and harge, my servoventilator (breathing machine) for night time, i would almost certainly have to find a carer in melbourne or pay my carer from here for the full time we are away- its just not practical from cost alone! yet that i the kind of thing folk were hoping they could finally access. not just basic care but the ability to travel a bit and join in better but those are luxeries and when here are people out there who still an't get help because they don't meat criteria, we can for et about that kind of stuff

certainly, when i have raised my concerns with how things are working, i am being listened to but then there is no reall ownership of the problem and no commitment to prevent problems again. now added on top there is this promise that this land of milk and honey called the NDIS will enusre that this work beter in the futre but i just will not believe it til i see it. i was told about tha clinet panlel, and i am more than happy to get involved with that but i will not believe in miracles to i witness them myselfs

Kebsa has your new equipment arrived yet or are they still playing hard ball and blaming one another for delays

Don