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.]

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This article was originally published at I Just Want A Wheelchair I Can Use! and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

Last week I received a letter from Domiciliary Equipment Services here in SA because I am due to get a new wheelchair soon. I have been driving an electric wheelchair for over 15 years.

What they are telling me is that before I can have my new chair that I have to be assessed as MEDICALLY FIT TO DO SO by my bloody DOCTOR and then a further PRACTICAL ASSESSMENT by an OT or PHYSIO.

This is OUTRAGEOUS! What would my doctor know about driving a wheelchair? Bloody nothing!!

Bloody car drivers do not have to be certified as medically fit to drive a car before they buy one. Children riding around on footpaths and roads do not have to be certified as medically fit. Oh inequity and discrimination reigns as ever. What to do? I am so ANGRY about this. SOOOOO insulted.

This is what I think of their discrimination!

Someone suggested that I refuse the assessment but I could refuse assessment and guess what would happen. I wouldn’t get my new wheelchair. I am sure this assessment bullshit has happened to many.

I can understand more if you have been diagnosed with a cognitive disability BUT even so we crips are the best adapters. There are many people who have strong spasms but still can drive their wheelchairs perfectly with no danger to others. Just another case of abloid judgements about us.

I think abloids should be assessed for competent walking before they are let out on the streets to walk in front of us and wander around texting and generally not looking where they are bloody going. Discrimination is rife.

It would be funny if we knew it was a joke. It is a joke but they are serious. Incredible.

I will fight this!

- Gleecrip

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Many practitioners become frustrated working in disability services BECAUSE of the restrictive processes and inadequate funding that requires them to constantly compromise on best practice. Adequate funding and service development focussed on consumer outcomes rather risk reduction would go a long way to retaining existing staff and encouraging people to continue working in the area.

- Natasha Layton

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This lady is in a very standard heavy wheelchair of a type often used in nursing homes.

Aged Care Facilities and community based “package” services have guidelines that include provision of AT, but this is often not the case. AT which is necessary for enabling activity and participation is often either not provided, or a diminished version of the guidelines is implemented.

For example, it is expected that Aged Care Residential facilities provide “standard” items of AT. “Custom” items are supposed to be provided by other programs. It is commonplace to hear of nursing home residents who cannot access an appropriate wheelchair to maintain their ability, especially when they require a lever drive wheelchair due to a past stroke, or a wheelchair suitable for an amputee. Nursing Homes can maintain that this is a “custom” item and that they therefore do not have to provide it. The relevant disability AT provider will maintain that it is not a custom item, and/or that a nursing home resident is a low priority. In the middle is the aged care resident who becomes isolated in their bedroom, dependent on a staff member to wheel them to the shower or dining room. The impact on activity, participation, quality of life and life expectancy is enormous.

- Asssistive Technology Committee of OT Australia.

Photo credit to Kaye – thank you.

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The client in this story wasn't as lucky as the owner of the house in the picture, shown with wheelchair access ramp under construction.

She needed a ramp at the rear entrance of her house as she had a history of falls at the current back entrance – a step with rails. The rise at the back entrance was very high, so the ramp needed would be approximately 9m to comply with standards.

I had plans drawn up by an architect, and the Victorian Aids and Equipment Program approved a maximum funding of $4,400 towards the total cost of the ramp.

Unfortunately, the client was unable to afford the required top-up funding. The client was on HACC funding only and not a CACPs package, so no funding towards the top-up amount was available from her existing packages. No top-up funding was available through any organisation that I sourced.

The end result was no ramp. Eventually, the client requested that an occupational therapist no longer be involved due to the ‘fatigue’ of having to go through such a long process with no end result. She remained at a high risk of falls when entering/leaving the property and thus hospitalisation/long-term care in a facility were a reality.

- Occupational Therapist, Victoria

Photographic credit to Larry Wilder – thank you.

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A wheelchair existing in isolation isn't much use - it needs to be part of an assistive technology solution.

An assistive technology solution can be defined as an individually tailored combination of hard (actual devices) and soft (assessment, trial and other human factors) assistive technologies, environmental interventions and paid and/or unpaid care.

So the environmental interventions such as installing a ramp or curb cut, the paid or unpaid care, and the assessments and trials of your equipment are part of an assistive technology solution just as much as the equipment itself is. This makes sense to me, because a failure at any of these points can be a catastrophe. Let’s use a wheelchair as an example – if you are provided with a wheelchair but no ramp to your front door, the wheelchair can’t be used to get in an out of the house. If you are provided with a wheelchair which isn’t appropriate for you and doesn’t meet your needs it won’t help you get around as much as you otherwise could. If you are provided with a wheelchair but there is no care provided to assist you to transfer into the wheelchair, then you can’t use it. If you aren’t trained in how to use and care for the wheelchair, you’re likely to tip yourself out of it at the first curb you come to. Everything must go together like a jigsaw puzzle or the whole picture just won’t be there.

- Ricky Buchanan

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Here are some example questions you might want to answer in a story – it’s best to stick to one question per story, but you can tell as many stories as you want to:

• Can you obtain appropriate equipment/services and can you obtain them when you need them?
• Have you given up trying to get something because it was too complicated/overwhelming and you didn’t have enough help to fight for it?
• What’s it like dealing with the administration of funding programs, especially when you need to obtain funding from multiple sources? Are you asked to contribute more money than you can afford?
• What its like to use specific purpose funders such as education funders, workplace funders, etc? Have you had problems such as being asked to leave the equipment at work/school even though you needed it in your life generally?
• Have you paid for equipment or services from your own money, and later found out you would have been eligible for funding but didn’t know about it? How do you find out about funding sources?

If you want us to help you with editing we can do that. If you want to add photos or pictures to your story you can do that too.

You can tell your story anonymously, using a nickname, or using your real name – it’s up to you. If you’re telling somebody else’s story though, you must get their permission before you use their name, photo, or any identifying details.

Are you itching to tell your story now? You can go straight to our Tell Your Story page and upload your story if you want to, or if you’re not sure about it you can contact me and I’ll help in any way I can.

- Ricky Buchanan

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This article was originally published at Tell Us Your Story and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

Natasha Layton (an occupational therapist) and myself – Ricky Buchanan (a blogger and equipment user) – accompanied OT Australia to a meeting with Bill Shorten, Parliamentary Secretary for Disabilities and Childrens Services on Friday 30th April.

In the meeting we discussed lots of things, including:

Chris Kennedy, Ron Hunt, Natasha Layton, Ricky Buchanan and Bill Shorten immediately after our meeting.

• Strengths and weaknesses of the current equipment funding and provision across Australia.
• What is best practice in equipment provision and what happens currently.
• The equipment provision process from the point of view of a variety of stakeholders.
• The supply chain from manufacturer to customer.
• How current equipment provision looks when bench-marked against world standards such as WHO ICF and UN CRPD.

To build on this meeting, we circulated an email asking everybody involved in aids and equipment – users, carers, parents, professionals, etc. – to tell us their stories so we could convey these back to Bill Shorten. The deadline was very short, with only five days for people to get stories back to us so that we could get them to Bill Shorten’s office in a timely fashion. In just five days we received a brilliant forty three stories from users, parents, occupational therapists, and others.

If forty three stories came in in just five days, I thought, what could we do with more time? The end result of those thoughts, after discussing it with many people in the disability community and disability services sector, is this blog.

In the next post I will discuss the aims of the blog and how we hope to accomplish them.

- Ricky Buchanan

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This article was originally published at Obstructed Technology: The Origins and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.