I Just Want A Wheelchair I Can Use!

Erin in her wheelchair with an extra high backrest.

I live in South Australia, and this is the story of how difficult it is being for me to get the right wheelchair!

I left hospital on Christmas Eve of 2008 in a hospital wheelchair. I had been in hospital for a month but had only two days in the rehab (as opposed to the acute ward of the hospital) to “learn how to use the wheelchair” – which at this stage was supposed to be temporary. Coming home to a completely inaccessible house was very very difficult.

Since it was Christmas Eve, they were unable to check out our house and just ordered a ramp and a wheelchair (the last one in the shop) for us to hire for a while until Domiciliary Care SA (Dom Care) could come out and check out the house and provide me with a suitable wheelchair.

So we got home and the first thing that happened was the ramp was unusable. There was no possible way of me getting outside alone and to leave with my husband was not very easy either. So based on his year 8 technology studies my husband built me a ramp for the front door.

After a few days this hired wheelchair broke and had to be replaced. It also cost something like $30 a week, which is a huge amount for somebody who is a disability pensioner. Dom Care’s fees are capped at $20/month, no matter how many services/equipment you use and recently I discovered through a friend that they can be waived so now we pay nothing.

I believe it took Dom Care several weeks before they came out with the replacement wheelchair… I remember the physio coming out and saying here’s your wheelchair. There was no assessment, no questions about what I wanted, no talking about my symptoms so we could find something suitable. ALL this woman did was turn up and see that it fit through the door. I remember thinking was well at least we can get rid of this borrowed one, at least the chair is not broken, and we are no longer paying $30 a week.

One of the first things I noticed was gee this chair is really heavy and hard to turn. Jeff, my husband, struggled to get it into the car but he had no choice. I liked the blue colour, but it was hard as a rock (no cushion had been supplied) and to make it more supportive I put the back-rest from the car into the wheelchair and that gave it a high back which stopped my movements. So basically it was too heavy, hard to push, difficult to get into the car, and very bulky. A tank in other words.

But I was naïve; I knew nothing about wheelchairs. I thought they all weighed a ton. I did not know what would be suitable for me, as someone who had severe chronic pain and fatigue and a movement disorder called Dystonia amongst other problems.

A wheelchair cushion was eventually supplied – a foam cushion – but was unfortunately lost when it got left on the roof of the car and Jeff drove off! So my neurophysiotherapist is letting me borrow her roho pressure care cushion. Apparently despite having pressure sores in the past I am only eligible for a standard cushion which is uncomfortable and not a proper pressure care cushion. I figure if I am getting pressure sores with the cushion imagine how bad it would be without one!

After 3-5 months, Dom Care finally decided to fund me a ramp out the back. It’s built to the correct Disability Standards and originally I was able to get up it no problem but now my disability has progressed I struggle to get up it at all! The difficulty with Jeff’s front door ramp is that I am unable to reach the lock of the inside door or the door handle, so unless I go out the front door with someone, or go out the front and come back again, its no good to me. However I must say that having two exits is an important safety issue – if there was a fire or something you would need to have two exits in the case of not being able to exit one way or the other.

So time went on and, to cut a long story short, Dom Care eventually gave me a WYMO wheelchair lift for the car and I have more independence now. The WYMO helped Jeff incredibly too, as he no longer had to lift the heavy chair.

The problem started when I discovered that being able to drive to a place is one thing but actually going further than 20m in my wheelchair is a bit of a problem. I could hardly get from the car to the doctor’s surgery, and going around a shop was impossible!

It was in July 2009 that I first complained about the chair being too heavy and it was then that I learnt that DomCare had it in their computer that it weighed 12kg, which seemed impossible to me. So then there were arguments back and forth about what the REAL weight of the chair was. Eventually I had the chance to get the chair weighed when I went to the WYMO workshop to get the WYMO repaired and the worker weighed it. It was 25kg – NOT 12kg, I was furious! But, of course, Dom Care did not believe me and did nothing. I think this was around January of 2010.

In the meantime I had contacted the advocacy agency here DACSSA (Disability Advocacy Complaints Service SA) in about October 2009. They were so overrun with complaints that they were unable to assist me (to get a better chair and more services) until about February/March 2010.

Just briefly explain basically there are two agencies in SA both under the Department of Families and Communities. Dom Care is predominantly for aged care people over 65 and is HACC funded, Disability SA is for people with disabilities and is state government funded. Since I don’t have a full diagnosis, I am considered to have a “medical condition” not a disability – that is why I have ended up with Dom Care.

Dom Care have VERY specific rules about what help people get. If you have someone living with you who is fairly able bodied then you do not receive services such as cleaning, or shopping assistance and they do not even do meal preparation. This applies even if the person with you is working full time, or has medical problems of their own. Apparently this is cause they are HACC funded and there is rules about what services they are allowed to provide. I receive 2 showers a week and some equipment – my husband has to do the rest on top of full time work.

So currently I am trying to get a better more usable wheelchair and more home help services from Dom Care OR to change into DSA care. This has so far been rejected due to me having a “medical condition”!

So for the last 6 months the advocate from DACSSA and an MP and recently Kelly Vincents office (D4D party) have all been trying to help me by writing letters every which way to get me appropriate chair and adequate home support services.

In about February 2010 I had a showering reassessment where I went from needing a static shower chair to a wheeled shower chair. The OT wanted me to have a self propelled shower chair and I said “well I am struggling with this wheelchair don’t tell me I have to struggle with the shower one as well is it heavy?” She said she wanted me to be as independent as possible, however in the end they did not HAVE a self propelled one available so it’s attendant pushed.

Since she was there I did say something about the wheelchair I told her face to face that the chair was the wrong weight in the computer and too heavy for me. I also mentioned that my neurophysiotherapist had suggested a manual to electric conversion taking the fatigue and pain away, or something like the Glide Power Assist. She told me that although Dom Care wanted me to be as independent as possible they did not have the ability nor the funding for a chair like that, and further that if I deteriorated further I would have to be placed in a Nursing Home because there would be no other option!

Then she said to me if I “wheeled correctly” that I would not have fatigue – but I had the LONG before I used a wheelchair. I was SO angry I actually made a complaint against that OT. She did not have the right to treat me like that. I understand they have no money but they cannot say that they are trying to make me as independent as possible when I cannot use their equipment!

Around 2 maybe 3 months ago I emailed my neurophysiotherapist and said “I am not coping I cannot use this chair any more!” And she said that she had a spare one that I could borrow. So I went into her office and she showed me the chair its about 17kg she told me. Still WAY too heavy but supposed to be an intermediate chair until SOMEWHERE can give me an appropriate one. I was surprised at the narrowness of the chair and she said it would be more supportive for me – she was SO right! It’s a 16 inch chair, rather than 18 inches as the previous one was, and now with my disability’s progression if I sit in a wider chair I fall over sideways. So this was very very kind of her to let me borrow her chair.

After this, Dom Care said the case manager (who is a trained physio) and the actual Dom Care physio are both coming out we have “found you a wheelchair”. This left me dazed – I had thought that wheelchairs were prescribed not found! I thought they would use a chair that actually suited the persons needs not just something off a shelf! Obviously I was WRONG very very wrong. So they both came out and so did a friend of mine as a witness. I actually could not stand up long enough for the two of them to get the cushion from my wheelchair onto theirs, I got stuck and had to slide across, and then I could not stand up again as I was too low! I had a go with the chair they brought and it was pretty much the same weight as my physios (15.2kg they said).

I was willing to give it a go because they told me that in order to get “specialised disability equipment” ie a chair under 15kg, power assist, or a power chair I would have to go to DSA – who incidentally have no money either. Apparently Dom Care do not ever provide custom chairs, you have to get what they have at the time. The issue with this is I need a custom chair as I have a disability not a “medical condition”, but no one has diagnosed it properly yet.

Then we went to the car and finally they gave me a slide board which has helped me! But as the chair was being lifted up on to the car with the WYMO I felt it snap. We brought it down and they said yep it’s broken – the screw must have been loose. Lucky I wasn’t in it when it broke! So they had to take the chair away to be fixed.

So we went back inside and discussed the good and bad points about all the chairs. It was decided that they would take the 18 inch one to be repaired however they promised to find me a 16 inch one so I would not tip over.

A week after they had come out I rang up to see what was happening with this. I was told that the 16 inch chair they have is heavier than the 18 inch one and harder to manoeuvre so they said I would have to have the 18 inch one. I said I can’t sit up in it, what will I do – use pillows or something? Then the case manager says to me “oh if it makes you feel more secure”. I yell back at her saying its not to do with security, I cannot hold my body up a 16 inch chair provides me with more support just like my neurophysio said it would. I have deteriorated to the point that I can no longer sit without support this is not a medical condition but so far the doctors have not really worked out what is wrong with me! My case manager said they could a 16 inch one for you but we have NO way of knowing what it would be like or how suitable it would be for you. I was sitting here thinking what ever happened to assessments? What ever happened to person centred planning? What ever happened to meeting a persons needs? What ever happened to prescribing appropriate equipment?

Obviously the SA government has no money for people like me and thousands of others on the waiting list who wait 2 years or more to get basic equipment like a wheelchair. I am absolutely disgusted at how I have been treated.

They say to me they will do everything we can for you but in order to get a specialised equipment you have to be in DSA. But in order to transfer there you need to have a diagnosis of a disability. And we go round in circles.

I actually said to them so I have gone from being able to get up my ramp in a 25kg wheelchair to hardly managing it (I was rolling backwards) in a 15kg wheelchair and I am lucky to manage maybe 10 or 20 m in the chair at any given time. What would happen if I could no longer do this? No longer even go round the house in it? They said they could do another assessment, but our hands are tied there may not be any way to get you a lighter or different chair because we are not funded to do that – the only way (they keep repeating) is to get into DSA and get onto a waiting list. They keep telling me that they want me to be as independent as possible which is very difficult without adequate support.

So to this day I am still waiting for the 18 inch wheelchair to arrive here as I feel I have no choice but to take it and if I fall sideways too much I will just have to tell them to order a 16 inch one and I will either use their 18 inch one or keep using the physio’s chair! Basically they were kind they are getting me different footplates and they are getting different tipper wheels for their 18 inch chair but it’s the wrong SIZE! It makes me wonder what is worse: falling over in the chair, or not being able to move it cause it’s too heavy?

I am at a loss as to what to do other than wait for the tests to come back and hope I get a diagnosis soon.

- Erin

[Editor's Note: Since writing this, Erin been measured for a personalised chair, but nothing has come of it yet.]