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disability equipment funding issues

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Pain Management Using Today's Health System.
Last Post by Don Grapentin 10 years ago
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 karen
Member
Joined: 11 years ago
Posts: 302
Topic starter 06/02/2013 2:08 am  

maryW, my case managers first name begins with R so not the same one but i think many of them are pretty good, the ones that stick around anyway- I can fully understand how frustrating and difficult it must be for them to work in a system where they repeatedly see their clients and families go without the help or equipment that would make life easier.

as for losing the rehab centre that is not much short of a crime!- i suspect that Grappers is correct when he talks about the land grab- in that area in particular it was all government owned land and has been sold off bit by bit for private housing over the yrs- not having access to a pool on site (and a decent size one at that! will have an impact on peoples recoveries- i spent 4 months as an inpatient at hampstead when had my amputation and i owed them a great deal! We now have far fewer rehab beds than a decade ago and it means that people get sent home far too early to clear acute beds and the unfortunate side of that is that stroke patients can end up being sent to nursing homes rather than completing a rehab program- that effectively ends the rehab- you have to get a person to a certain stage before outpatient rehab is effective- i'd love to know how much money our gov has raked in from pokie tax, land sale and the sale of housing trust properties in the past 10 to 15 yrswhile they have ute services more an more!

as for my situation, they sent a maintenance worker out to check this replacement chair as it has a clunking feeling as the leg rest moves- he said it is ok for the short term but definitely needs replacement- he laughed when i told him this was the replacement- He also staed it was not suitable for sleeping in -that they are not that robust so i explained the issue with the bed and he instantly saw the diliema and will put a report in- i wanted to make sure that if he got them to replace the recliner that he was aware that i would have little option but to continue to sleep in it as long as the bed issue is not sorted- if they get enough reports and letters from enough different areas it may help but i have also lodged a formal complaint- a required step before i can go through the ombudsmen s office- i will also send a letter to the minister- thanks for the offer of contacts but i had to go to that level a couple of yrs back to get my personal care funding- i had been placed on the unmet needs list back then- a wonderful thing that developed when they were getting bad press over expanding waiting lists- they capped the lists and opened these black holes called unmet needs lists! and i am making sure i keep a log of all my phone conversations etc.

the ot has got the picture now but i just don't think she feels able t dig her heels in. i had pointed out that my version of a stnad and pivot transfer is not straight forward, i need to be able to kneel on my stump so i do not have to twist the left leg- i reminded her that -the left leg has a 12 yrs old knee replacement that has done well but a full body scan a few yrs back showed it was either exhibiting a bony stress reaction or it had loosened- it has not caused any major issues but twisting is a no no for any knee prosthetic! She had relayed this to the head of the equipment program and had been told to ring me back to ge my permission to speak to my GP to ask for referral to see about getting a new knee replacement!! He will fall off his chair laughing so i had OK the chat and warned her that that is the most likely reaction- she should have been able to tell the program head that one and that as a morbidly obese diabetic with only one leg, notmany surgeons are likely to touch it, if they di the chance of success would be low! i have accepted that basically if this knee were to give out it would be the end of standing! My GP has already raised concerns about what the ct may show in my back -if it shows worsening spinal stenosis and backs up a diagnosis of cauda equina syndrome etc that is usually treated as a surgical emergency to prevent permanment damage and even paralysis - when he did the referral he basically said god help if it does show things have deteriorated- i would not be considered a good surgical candidate - basically if i can function ok with adequate equipment that is the low risk option!

i am sure that eventually with enough yelling and shouting i will get approval for the equipment but past experience tells me it is likely to be a slow process not just a few weeks- then it will be a case of waiting for funding to be approved (personal care took almost 2 yrs even with advocacy and letters and that had been approved quickly as urgent it was just funding shortfalls!)- in the meantime my back is really bad. i havebeen able to mamange my chronic pain well in recent yrs- it has always been there but with my pump it has been more a case of bad days but i am not sleeping well at all and ii is making things difficult to deal with- i rang th pain unit and we discussed wether increasing the pump rate is worth it but as it is largely nerve pain its seems unlikely , they are going to try to get a report send to dsiability sa to help- so i have a good deal of support its just how to cope in the time that it takes to get the system to do what it should have already done. common sense says when equipment is prescribed for a degenerative condition, when it needs to be replaced, the euipment should at least match what was previously prescribed- not go back to more basic levels!

One thing is for sure, as a nurse i alway saw advocacy as an important part of my job and it is easier to fight for other than myself if that makes sense- i have often consdered getting involved with the advocacy groups- too many are scared they will lose what they have if they make waves- this has gotten me mad now and i am at the point where if i am not are i sart blubbering so not so effective but i will bec checking out ways i can help others as soon as i get my situation sorted!

wel is coming up to 2am and i am tired which torture do i try the bed or the chair!


   
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 grappers
Joined: 1 second ago
Posts: 0
06/02/2013 8:40 am  

Gets as many professionals and helpers write as many letters they can to help your cause, keep a photo copy for your own records, these come in very handy if you decide to take it ant further, I would take photos of the equipment they have supplied, highlighting the inadequacies and faults. You have to keep has many documents and such as you can, that way they will have no come back.
I hope for your sake this does not turn out to be a dragged out process, stay strong and don't let the buggers win.

Don


   
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 karen
Member
Joined: 11 years ago
Posts: 302
Topic starter 07/02/2013 1:30 am  

thanks for the suggestion of photos, i had not thought of that may even get my personal carer to take a few short video clips to illustrate the issues- but good ideas- i have already starteed logging my conversations, keeping notes and copies of documents.

i have realized just how inexperienced the OT is, as an amputee i have a stump support on my wheelchairs- these are purely to prevent knee and hip contractures forming by supporting the stump in a good position- She thought it was something for me to kneel on! in fact if you leave the stump supports in place and lean to far forward the chair is llikely to tip! i would have thought that was basic information for an OT whose role is t prescribe equipment and make sure clients can use it safely- that was an eye opener! no wonder she is so easily pushed around by the red tape producers!!

i get my ct scan results in the morning and will have a good talk to my GP about what if anything can be done to help me get through this better as i really am struggling with pain levels more than i have for years. I hope i am wrong about how long this is likely to get sorted but i just have that real bad feeling based partly on how slow the process can be even when thhere has been no real argument, just the usual funding issues- i think the biggest potential positive is the election looming- it was the state election and living in a marginal electorate that ushed the minister into action over the unmet needs list problem -its amazing what they can do when it comes to election time- aren't i a cynic!!


   
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 karen
Member
Joined: 11 years ago
Posts: 302
Topic starter 10/02/2013 4:39 am  

well i got my CT results and basically show what the previous once did and some nerve root compression and significant facet joint degenerationworst at L4L5 but throughout the lumbar region. GP said its what you would expect with a rotten back with a few more yrs of wear and tear! But he said thre was nothing that looked acute so if nerve compression is causing the incontinence issues and the loss of power in my remain leg its likely the damage would be permanent anyway. as for the acute pain i am getting a reent due to this equipment fiasco- both he and the pain unit doc feel its just a case of sorting out the correcrt bed and chair rather than changing meds- they are both going to right letters of support to try to speed things up but i don't think they realize how slow these things can move. even if they changed here opinion tommorrow and said yep. i would have to wait til funding was approved, then til the customized euqipment could be made- eg a recliner takes about 6 to 8 weeks! not so sure about the bed - They are going to send out a appointment to the pain unit psych to help me cope with the increased pain and that is appreciated but ge whiz! i just would like to be able to get a little relief from this pain/ I

i have ealt with CP for around 30 yrs now and usually can deal with flare ups quite well, i don't have any short term meds other than over the counter stuff and i cannot take antiinflamatories due to esophageal dysmotillity syndrome- i get ulcersvery quickly! so its panadol panadiene only- i have even tried the paracetamol osteo but that seems just like a more expensie version of the cheaper- no more effective to me anyhow. maybe the psych can help- i could deal with this i think, if i could get just a few hours relief occasionally until the equipment problems were sorted -its 4am now and i am so tired but i cannot face either that damn bed or that rotten chair and i if i fall asleep in my wheelcahir i am likely to fall out! i guess it will be the lessere of 2 evils- flip a coin!


   
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 karen
Member
Joined: 11 years ago
Posts: 302
Topic starter 10/02/2013 6:14 am  

santosha, i understand your frustration when my pain iisuse got reallybad about 20 yrs ago - initally injured my right leg 30yrs ago. but when things got bad i was a single person with a mortgage paying 18% inerest! I did lose my house- it was a forced sale by the back- not quite a forclosure but thats what would have happened if i refused the offer that was madebut the offer was20, 000 less than i borrowed! i dod not know i could access my super either- eventually i found out and aleast was able to get the big debt i had accumulated off my shoulders

as for advocay, i agree in fact i was eventually asked to speak to a conference of service providers to speak of how tough it is. MY backgriund was nursing- i was an rn working in the public system and my job was knowing where to refer people for help and support and to advocate for them when needed- but i was in such a low place i just could not do it or myself! so at one point i had no job, had lost my home. had no permanent address and had just had my right leg amputated- i could not even get a shower chair from dom care as my condition was not considered a permanant disability - an amputation is considered something short term and complex regional pain syndrome was not onl the list of accepted disabilities. in my case my very frustrated father got so angry when he found i had been refused basic equipment from dom care (short term wheelcahir hopefully as we hoped a prosthesis would be an option, turned out not) and a shower chair i just did not have the money to pay for them privately. well dad was caring for my mother who had terminal stomach cancer and he used to get 2 hours respite to get away from the house each week- he used it to go to dom care and demanded to see a senior, and asked them how he was meant to help me and care for mum! SO magically i was givene equipment and amde a dom care client as a service to support mum and dad! in my work capacity i would have been able to help some else in this situation but i was so low that when they said no i just said ok and went back to where i was staying ( a friends) and cried. thankfully i got a housing trust home in a few months thanks to doctors letters etc but it was a dreadful tim and very over whelming!

even now you may have seen my thread about issue getting equipment- 20 yrs down the track, i have MS chronic pain, the amputation, osteoporosis thatled to 3 fractured vertabrae when i had a fall, lymphodema and use an electric wheelchair - there was some spinal stenosis from the fall and the ms effects have led to incontinence etc. my father who helped me back then has long since passed as has my mother and i still regret he had to go through all that i should have been able tohelp them when they needed it not be and extre burden

since then i have found disability advocacy and complainsts service of SA (DACSSA) and they have helped but not sure what is in the other states. for the public health system there is the ombudsmens iffice, and the relevant minister eg health for hospital/medical related stuff or communities and social inclusion minister for disability service related stuff- that should be faitly similar in each state but you still have to have someone help you with these processes when you feel so low and vulnerable and that can be tuff- i have been lucky over time and had case workers and social wokers who have far above and beyond what they should. eg, when my pain issues had been reasonably controlled i started part time work back in 2000 and eventually inc my hours to the point that the pension stopped! then i a few yrs later i was diagnosed with MS- i had to cut my hours but it was still enough to live on and i still had a helth care card thabks to mobility allowance but in 08 i had areally bad yr and spent months in hsopital due to MS- i was living off savings as i had not been able to fill in the forms etc to get the pensions restarted ( i had to re apply) i had had some help from an agency that helps when your job is at risk due to illness from MS etc but once she realized i had not had any income for 4 months she offered to act as my advocate for social security and brought the forms for me to sign- that was well outside her role and somthing she di on her own time !

i guess what i am saying is that help can come from strange places - of course you need to be a little cautious on who you trust but it is amazing who will help once you stick your hand up and say the magic words " i can't cope with this, i need help!) maybe i have just been lucky

i struggling at present with this equipment issue but i have no shortage of professionals in the process of writing letters of support to confirm that replacing the oriigianl but old customized equipment with off the shelf equipment is having a serious effect on my pain levels my mobility and my ability to cope- increasing my risk of falls and other medical complications- don't know how much help it will be but the offers came easily when i said i was not coping

if you are in SA and wanted info about where you can complain about treatment or services in the public system , i can give them to you but every sate is different- the process would be similiar go to the state gov home page, following the links to health services or communitycar/disabilty services and you should find complaints contacts. not sure about equivalent groups to DACSSA but if you got to the mbudsmens office( ring them) or check there web site they may have links as they expect you to have tried other options before you get them involved

there is one thing that i still think is true though- when i was asked to speak at that conference, i pointed out that as a person who had always worked in the public health system, and particulary in an area that was used to dealing with the community support services and when i had my own problems i could not deal with the system- i was very concerned that if it was that hard for me, how much arder would it be for someone who did not understand the structure of the health system and what services exsisted- no wonder there are people who fall through the cracks! Sadly because the systems are under pressure from inc demand and limited funds i think they are quite happy leaving things so that the user has to find them, they are not quick to tell you what is available- maybe we can share that information here
so here are a few

in SA, we have the ACCESS ab vouchers to help those with mobility issue who cannot use public transport without significant assistance. its paid at eith 50% or 75% depending if you are completely wheelchair dpendant ornot each state has something like this

in south aust, there is another part to it for those with 75% voucgers- if you are doing tafe or uni studies for more than a 25% load you can get additional vouchers that cover the full fair to and from uni
if you are working or doing volunerr work you can gett additional vouchers that pay 75% of the trip to work neither of this schemes are advetised anywhere!

then nationally through centrelink there is a mobility allowance-tax free andnot means tested that is paid to those who have substial difficualty using public transport- eg need a lot of help -you need to be do a certain amount of work, volunteer work or looking for work, training for work to get this one and there are 2 levels depending on how many hours you do but it also gives you a health care card that is very helpful!

then for people sith continence problems, there is the CAPS scheme that pays about $500 per yr tp gp tpwards incontinence pads, catheters etc

more recently these have started
firstly in SA but other states may have something similar- due to the spiralling electricity costs, there are many people who have help conditions that are badly effect by heat eg neurological conditions and spinal ord injuries where you cannot regulate body temp below the levelof you lesion etc there is the medically related heating and cooling allowance of $160 per yr given quaterly -was a bit touchy to get approved at first but i hear they have gottent their act together a bit better now

in july 2012, federal gov started a medicaly required equipment allowance, i was told by someone in the MS association THAT it exsisted! basically if you have certain conditions that require the use a items from a set list of equipment then you can get and allowance of $120 per yr (i think-its either 120 or 140). if your need for instance an electric adjustable bed, electric wheelchair, feeding pumps, cpap machines, heating/cooling and a few others, you can get up to 2 lots of the allowance for multiple allowances- i am just in the process of applying for this one so not sure how well they process these first time through

i figure this is one way to get the information around- for us to share it- is that a possibility that there a a place for people to share nformation about how they access various forms of support


   
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 Terina
Member
Joined: 11 years ago
Posts: 289
11/02/2013 2:31 pm  

Kebsa, my heart really goes out to you. You are an amazing lady whom I greatly admire. Your journey is an extremely tough and challenging one for you to endure.

I just hope your life becomes a bit easier really soon and that a lot of the red tape can be cut for speedy replacements of your much needed chair and bed.

I am heartened that you have professionals on your side whom are willing to help you fight for your basic needs.

On the pain killer side of things; Panadol Osteo is available in packets of 96 for around $12 (I think), when these are taken every 6 hours they can provide a level of relief. There is also another over the counter drug called Panalegesic, these have paracetomol, codeine and another drug that is a mild calmative. They can also provide a level of relief. I am sure there would be many other over the counter pain relievers that we are unaware of. Maybe a good chat with a pharmacist would be beneficial for you. Our local pharmacy will take phonecalls and make deliveries if needed, would that be an option for you?

I hope you managed to get some "safe"sleep Kebsa.

Huge hugs to you. Take care and all the best 🙂


   
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 grappers
Joined: 1 second ago
Posts: 0
11/02/2013 2:49 pm  

Kebsa even if the doctor is right and it is just a case of getting the right bed and chair, that is a long term proposition and what you need is short term relief, and over the counter pain relief just doesn't cut it in my books and can only be taken regularly for short term that's why they write on the packaging if pain persists see your doctor, another thing is he has put your pain as acute WT* has not your pain been their for over 6 months if not years, in my book that is classified as chronic, hopefully this psychiatrist has some better options for pain relief.

Don


   
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 GarfieldRules
Joined: 1 second ago
Posts: 0
11/02/2013 5:40 pm  

Kebsa, just sending you lots of hugs. I hope things get a little bit better for you soon. Take care. xx


   
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 karen
Member
Joined: 11 years ago
Posts: 302
Topic starter 12/02/2013 9:41 pm  

i agree that what i really need is some short term additional medication- i am quite content to put up with the odd bad day/s under normal cirumstances but this is not that kind of situation- the bed saga started back in mid 2011 and it took til late last yr to get the one the sent out (this one that is not suitable) and rather than accepting they did not send what had been prescribed by the original OT, it is a new presciption from scratch! i was managing unitil my recliner broke down and they said that it could not be reliably repaired! with that they disputed the need for a customized chair lilke the last one was and so it seems i have to be able to prove that to them by trying what they supply before i even get onto that waiting list for the chair. i had hoped that the pain unit doc would realize this was going to tkae a while but it seems he has not had to deal with getting major equipment in recent times i think he thinks it will not take long - unfortunately i have dealth with equipment issues before and know that getting approval and getting onto the waiting list is only the start, then its impossible to say when they will get funding through- even if they could replace the chair quicker i could manage better - its not having either that is the big issue. i was told they would post out the psychaitrist appointment and the thought was it would be this week some time (not yet though) and at very least i have wondered if he may recommence the endep and /or avanza i was on until a few months ago as they may help with the nerve pain- i will also just push my point that i know its an equipment issue its just that is not as short term as logi would imply! even if the CT scans had suggested something that may have taken me do the surgical path, i would not have been keen- i know enough about my situation to know i am a poor candidate for surgery and i certainly do not want to add failed back syndrome to my list of issues! i have learnt to manage things as they were - just outside the level i can manage with at present. it took 18 months to get person care assistant, it took 2 yrs to get a new shower chair when the old one was rusting through, and so far it has taken close to 18 months to get the wrong bed and start again! thats why i know this wil not just be a week or so but poor naive pain consultant is not used to that kind of lunacy i think

thanks again
Florrie, i have tried the panadol osteo, did not do anything, panalgesic is minimally helpful- i even asked my GP about his thoughts on Krill oil (thinking it may help the pain from facet joint degeneration) - he laughed and said, "leave it for the poor whales, they have to have some thing to eat and it will not help you!"


   
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 karen
Member
Joined: 11 years ago
Posts: 302
Topic starter 14/02/2013 1:38 am  

mrs shingles, that is a remarkably similar kind of situation- the crazy thing is that my previous recliner was a made to measure chair by a company that is still around now, they just do not have a contract with that company anymore- and while back in 2006 when that was prescribed the OT and i just had to try a variety of chairs at the Independent living centre and also a couple of company showrooms- then she had to make a case why the standard stuff was not suitable- that thenopened the way for made to measure! makes sense. when it comes to disability equipment for those with major disability eg needing electric wheelchairs or kids with cerebral palsy etc its not very likely that an item is suitable without any customization- contractures etc see to that!

i remember reading an item saying they wanted to have a smaller range of brands so they could have items in stock, it also meant tha items could be recycled between clients more easily- sort of make sense at first! But i am 5 ft 7 and an amputee- that alone makes the standard chairs less suitable- my so called good leg is not so good so i need to be bale to stand on it fully extended and kneel on my stump- i also need the back up of being able to use a slide baord for a transfer - means the chair can only be in a fairly narrow range of height from ground to seat. But now instead of accepting the word of the OT we have to prove it even though i am less mobile now than i was in 2006!

as for a disabled child the chance of the ready to go options being right and also being able to accomodate the childs growth athe same time- thats tough- i thought thats why they had the seating clinics! even with me, at the same time i was having the issue getting suitable recliner and bed, my electric wheelchair was reviewed athe seating clinic to add some simple hand holds to help trnasfer more safely. - in my case thats the 2 extremes- subtle changes to equipment because they are worried anout how safe it is for me to rtransfer from manual wheelchair to elelctric wheelchair, but then totally inappropriatte equipment that i am forced to use that involves a very unsafe transfer before they will approve a new referral but still not necessarily a made to measure option. i was also told that in teh case of degenerative conditions such as MS they are no longer able to say they want to allow for deterioration when applying- only exactly what you are like today- do they stick to that with kids too?? if so how dp they allow for growth spurts- it would be constant cycles of applying for equipment- thas far worse than me- at least i can expect a few yrs at a time

hugs to you nepjew and his family ( you too fo course)

hope you are feelinfg a little less like a cars bumper bar now! too- are things settling down??


   
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 karen
Member
Joined: 11 years ago
Posts: 302
Topic starter 16/02/2013 2:01 am  

i had some feedback into my criticsm of how this has all been handled so far- i made a fromal complaint into Care assist (part of disability SA that handles equipment and equipment request approvals) She has agreed that mistakes have been made and that things have not been handdled as they should have- thats quite an admission! She has confirmed that new prescriptions have been made and confirmed that the system no longer allows the therapist to state exactly what they want they just find something close to it if they can without going to the customized stuff but she agreed that when equipment is so far from suitable that it increases risk of fall or makes condiions worse, that is not acceptable either. - Unfortunately it is effectively starting the process from the beginning excpet she has said that approval for custom items has been given so its a case of waiting for funding then actually having the items customized so sadly she still cannot give a time frame- she did agree that having neither item at present was creating severe hardship and said that she has re inforced that where they can the paperwork and processing side of things needs to be cut to a minimum- she also said that they have written into prescriptions that there is to be trial to ensure that they are suitable. she also pointed out that they should have not even agreed to the bed that the supplier sent them as one of the major functions that had been requested ( trendeleberg positioning) was not available on this bed and they had acce[ted it and signed off without OT consultations- SO having them admit that the system has been so faulty this time is a bonus, i note hwever this was all verbal and i doubt she would ever write a letter with the same comments but it is a start. sadly it still means more time dealing with increased pain. I told her that even if they can push one of the items through quicker and the second took longer, it would make a big difference- when i was fit, able bodied and just left home, not having a bed or a chair would have been a nuisance but camping in your first flat as a young newly independant adult was wrth it- not so easy when yu have multiple disabilities and considering the bed referall started in 2011, it should never had happened-

now i have an appointment for my refill on friday, its usually with the nurses only but i am going to try again see if considering the time this isgoing t take to sort out the equipment issues, if i can have some help with break through meds- still not sleeping well etc so i think it will be fairly aparent that i am not doing as well as usual- i love my pump and its normally enough at the current levels and i agree it seems off to inc the rate due to eequipment problems but there should be some more sort erm options to get through the worst of this- if my original specialist were there i think this would be easier - i have a n appoint with the psych that day and hat may help


   
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 karen
Member
Joined: 11 years ago
Posts: 302
Topic starter 01/03/2013 5:32 am  

don't want to celebrate yet in case i jinx things! i had to meet the OT at a medical supply showroom to have a look and try a bed and it seemd promising. it goes all the way down to floor height if needed but high enough for nurses doing are such as changing my catheter without them having to bend over too much. The mattress also seemed better. the last one was suppossed to have been late but it seems it was a 4 layer very dense foam- it was incredibly hard! well the one i tried today was basically foam but had air cells in it to make it firm enough fr a heavy person like me but also with enough movement to be considered a pressure relief mattress. IT als has the trendelenberg position so i can elevate the foot of the bed to help with the lymphodema. She said they were arranging for a home trial so i am not sure how long that will be but at least it is in the wind somewhere

as for the recliner, I had hoped that would have been seen to by now but it may be closer- disability services had insisted we look at a stansrd chard at the same time as the bed and both the OT and the sales consultant could see the problems and it was agreed it was not suitbale. So i was a bit frustratated, but i had a call from the OT today,she has been in contact with the comapany that made my previous recliner and they are coming out with a test model to measure up what is required ( instead of me going to them this time!) so it looks as though after all the comments about not dealing with that company any more etc- 3 months after my old chair died, they have had to go back to the same company after all- why it has taken 3 months when we went through the same elimination process when the ordered the previous one! So hopefully on tuesady they will have a report that will get approved fairly quickly then 8 weeks later i will finally have a chair

so i still have bout 8 weeks to wait assuming not more road blocks- at least its getting closer. now i just need to et the pain stuff settled a bit better- i am perhaps halfway out of that hole now instead of splashing around in the bottom of the pit like i have been- its a definite improvement


   
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 Mary
Member
Joined: 6 years ago
Posts: 2092
01/03/2013 7:54 am  

That is wonderful news kebsa! Even though the wait is still long, at least you know there will be something nice and comfy on the end of it. I sure hope that they surprise you again and have everything ready even sooner for you.

My cousin, who is partially paralysed following a major stroke, has one of those beds and they are wonderful. It can be put in all kinds of positions and heights. Fortunately, he ran his own business prior to the stroke, so he was financially able to buy his own bed. I think that it is disgusting that people who cannot afford the $3-4K that it costs for these things are forced to remain awake most nights until the bureaucracy and red tape are dealt with. If this was a matter of weeks instead of years, we could understand, but it's not.

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables


   
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 grappers
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Posts: 0
01/03/2013 11:24 am  

Kebsa well it is better than the long wait you were expecting, keep giving them a push and gentle hints, with a bit of luck they will not have to modify them too much to suit your needs and you get them a whole lot quicker.

We will all have our fingers and toe crossed and sending out positive vibes so the gremlins don't come

Don


   
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 karen
Member
Joined: 11 years ago
Posts: 302
Topic starter 01/03/2013 10:48 pm  

the bed should be quite quick i think, thats mainly a case of getting through the red tape at disability services and i know that the OT has insisted that it is sent as a trial first so that if there are any issues we have not found it will not bee back to the starting blocks again like last time! its not their usual process (although it seems to be a sensible approach andperhaps should be done more often!)

they have agreed that like last time the chair is going to have to be custom built from wo to go- I thought it was being a larger person and being a bit taller than the average older person who usues these chairs and it seems that is part of the option but the fact that i am an amputee changes the structure of the chair quite a bit- at least if they want it to last a decent length of time anyway- they claim a 6-8week time to custom build a chair and while that is not great at least it is in the ether! they have agreed to the need- its just annoying that this is the company that made the last one when the OT said the standard models would not be suitable. its annoying they could not use the basis of the previous report rather than starting from square one- the old one broke early november late october. in an ideal world when a person is dependant on custom made equipment such as electric wheelchairs, there should be a point in the life of that chair that when the maintainance guys see they are reaching the end of the workable life, they should place the request for the new one then- i have heard of situations where a person has had to stay in bed because they need a new chair and things like electric wheelchairs are really tailored to the user. A friend of mine who cannot manage at all in a manual chair gets confined to bed if her electric chair is ever in for repairs- But the current system does not allow for a request for a replacement until the old one has had it- thats an imperfect system as it will mean hospital stays for some until the equipment issues are sorted- that then has a flow on to people like you grappers who are waiting to get help with a dud shoulder


   
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