Transport when you're on wheels
Before Alstonville's Peter Sullivan was diagnosed with Multiple Sclerosis (MS) 30 years ago, he and his wife Eva lived an active life. They would go shopping, to meetings or out to lunch regularly and Peter travelled around for work. As the MS progressed, Peter lost the use of his legs and right arm and went from using a walking stick to a wheelchair, then a motorised scooter. As the couple began to discover the reality of living life and getting around without adequate transportation, they modified their vehicle to accommodate a wheelchair; until Peter was no longer able to lift himself out of the wheelchair and into the car.
"When I try to move my arm, nothing happens," Peter said. "Now I understand why people get stuck at home."
As Peter's carer, Eva didn't have the strength to lift Peter out of his wheelchair and she used to wonder how they would ever get anywhere.
"Able bodies can't comprehend not being able to get into a car," Eva said. "In Australia, 75% of the population of people with MS are women, and the caring roles are often reversed. I used to wonder 'Will the wheelchair fit into the boot? Can I lift it up?'"
In the past 15 years the couple has seen some changes in the availability of types of transport suitable for carrying people in wheelchairs. Now, not only have local taxi services begun to acquire Wheelchair Accessible Vehicles (WAVs) in their fleet that will lift the wheelchair and its occupant into the vehicle, but Northern Rivers Community Transport (NRCT) has also acquired another new WAV. For Peter, having access to these WAVs is the only way he can ensure that he'll be able to travel anywhere at all while taking his wheelchair with him.
NRCT's WAV fleet, along with the fleet at Tweed Byron/Ballina Community Transport, is mainly used to help people with disabilities get to medical appointments or for group outings, which means if Peter needs to travel for any other reason, he has to rely on taxis. The high cost of a return trip by taxi to Lismore means he often chooses not to go out.
"We might go out one day every month at best," Peter said. "When my condition got to the point I needed additional physiotherapy it was costing me $370 for my return trips to Byron every week. I got a shock. It's impossible to do this and many people give up. The more I looked at it, I realised it was wrong."
Peter became a member of the Disability Transport Taskforce and has been campaigning for the last two years for the government to address transport accessibility and affordability issues for people with disabilities. After conducting a survey of the North Coast MS community in 2009, the Taskforce found that the number of people with disabilities in the area was growing and that similar stories were being told by the whole MS community. Peter submitted the Taskforce's findings to a parliamentary enquiry in 2010, but very little has been done about it.
"Cold is an exacerbating factor in MS," Peter said. "Now more people are being diagnosed with MS and they are moving here for the warmer climate, so the number of people needing assistance is growing."
Peter and Eva moved to the warmer climate of the Northern Rivers 10 years ago, after the cold climate in Canberra caused his muscles to lock up badly. As the co-ordinator of the Multiple Sclerosis Network of Care, Peter also began campaigning to address the transport problems being experienced by people using mobility aids.
As well as issues of lack of availability, unsuitable design, long waiting times and prohibitive cost of transport, there was a growing problem of isolation as people couldn't afford to travel or didn't know where to get help.
While some people with disabilities have access to the NSW Government's Taxi Transport Subsidy Scheme (TTSS), which allows a 50% reduction in taxi travel costs for trips not exceeding $30, many people are still not aware of the services available to help them in NSW. The Disability Transport Taskforce's survey showed that the $30 ceiling on the subsidy made travelling by taxi for any long distances unaffordable. It costs $50 each way for Peter and Eva to make an 18km trip from Alstonville to Lismore. With the maximum allowed subsidy, the $100 fare will only give them $30 back, making travel very expensive.
"I stay at home more and I need to get out into the community; the isolation is creeping up now," Peter said. "The Northern Rivers is a large rural area and
distance is a big issue. Medical specialists are further afield and trips to the Gold Coast can cost people hundreds of dollars. There are not enough WAVs here to service everyone who needs to use them. If you want to look after an ageing and disabled community, you have to pick them up."
In order to keep his muscles from atrophying from progressive MS, Peter needs to use the gym three times a week. He organises for a WAV taxi to pick him up and he heads off to the Alstonville gym, where he uses the specialised vibrogym equipment.
"Going to the gym can help you," Peter said. "It's affordable and convenient for me and only costs $10 in the WAV taxi each way. If it's convenient and in your budget, you will get out, but it can be expensive depending on where you have to go to. People in my position ask themselves 'can I afford to keep my muscles in shape?' There's a point where people get stuck and think 'is it worth even trying it?'.
"These diseases are chronic; it's about maintaining or deteriorating and if people don't move about much, they don't see themselves improving and it becomes complex, a health and mental health issue. One lady in my MS group said to me 'if I could share the cab costs I could come to more meetings' but WAVs can only fit one wheelchair. It's a problem if people can't use the system because of its cost."
When Peter needed to be taken to Ballina hospital he was surprised to find ambulances were not able to carry wheelchairs. He was given a purchase order for a WAV taxi and was wheeled into it by the taxi driver.
"Cabbies are the lifeline for a lot of people," Peter said. "They are not medically trained and act as carers, making sure that people don't get stuck in certain situations. They don't just get me and out of the cab, they help me into the house. They really do care… it makes a difference."
Peter was frustrated to find out that the NSW health service wasn't able to transfer people in ambulances and recently raised the matter with Page MP Janelle Saffin.
"This situation illustrates that you can build a hospital, but not have all of the infrastructure needed to make the system work," Peter said. "Janelle is supportive but told me transport is a state issue, whereas health is a federal issue… under the new National Disability Insurance Scheme (NDIS) the cost of modifying a vehicle will be covered for you, but not the cost of transport."
Local taxi companies in Ballina, Byron, Casino and Lismore have responded to the need for more WAVs by purchasing additional ones for their fleet. Casino Cabs now have four WAVs, Lismore Taxis have three, Ballina Taxis seven and Byron Taxis nine. Director of Casino Cabs Ashley Clark-Smith said in 1997, his father pioneered the first WAV on the North Coast at a cost of $60,000.
"Today, it can cost up to $40,000 to convert a vehicle to full wheelchair accessibility," Ashley said. "We have to fit an electronic hoist and the floors need to be strengthened to take the weight of the hoist, and it's expensive to maintain."
While having taxi companies on side providing transport options for people with disabilities is a great start to addressing the problem, Peter observed that many government agencies with responsibilities for people with disabilities do not have vehicles that can accommodate wheelchairs.
"When an organisation like Homecare is investing in a vehicle, why not choose a flexible option and get a WAV? Carers could them take the person in a wheelchair to do the shopping, rather than just meet them there," he said. "The WAVs are adaptable and can look like normal sedans. At the moment, it's all on the cabs to solve the problem and they are doing their best to address it. If more organisations buy WAVs, it would create a second-hand market and if they became more commonplace, they would start to be cheaper."
Northern Rivers Community Transport manager Colleen Thomas said NRCT's new WAV will comfortably take a wheelchair and family members, or two wheelchairs if needed, and is suited to doing individual trips. People can book the vehicle if they have their own driver.
"While we don't have enough vehicles or drivers to meet all our needs, we do have a partnership with Casino Cabs and Lismore Taxis and can provide people with disabilities and frail, elderly people with taxi vouchers," Colleen said. "This enables them to attend support groups and to visit loved ones and can be used in conjunction with the usual Taxi Transport Subsidy Scheme."
Peter would like to see new ways of managing transport for people with disabilities, including changing the transport subsidy scheme to better serve people in wheelchairs and providing more incentives for companies to invest in WAVs. Peter would like to see a new smartcard technology which carries the person's entitlements based on their level of disability. In South Australia, there is a 75% subsidy on taxi fares and in Tasmania, it's 60%.
"A strong voice is needed for disability groups," Peter said. "There are a lot of people in need who are not able to advocate for themselves. People with MS get fatigued and tend not to take on challenges. I was fit and able once and now I've moved to the disability sector, I can see something is very wrong.
"In 1980, Japan made it a goal to look after the ageing population and now they have produced a car called the Toyota Cube. It's fully equipped for wheelchairs, kneels down, and can be imported to Australia for $30,000. It's perfect but it may not have adequate headroom for some taller people especially those with 'height modified' wheelchairs.
"Here, we talk of a need for more nursing homes, but we also need to create a pool of vehicles. Japan is a good example of a nation setting a goal and producing products to meet that goal."