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Longitudinal studies show that around 50% of people with MS are independently mobile after 15 years and can live normal and productive lives.  For those who are not independently mobile, unresolved transport and mobility issues, through lack of awareness or otherwise, frequently have a 'domino' effect by making it difficult to access other forms of essential support. This area of the Road Map identifies a number of Transport and Mobility resources and also includes an overview of unresolved regional issues.
Following is a selection of Transport and Mobility support programs and services identified by people with MS. While some of these may relate to services in a specific locality they typify the types of support more broadly available.  If in doubt check with your regional MS Australia representative to find out about the availability of these or comparable services in your locality. Topics are presented alphabetically.

Service  

Agency

Overview

Contact More  
Community Transport  Transport NSW - Home and Community Care, HACC,  funds transport services to help the elderly, sick, disabled, less mobile people, youths, and those isolated by distance - Country Directory. The aim is to enhance independence and avoiding premature or inappropriate admission to long-term residential care. While a contribution from clients is sought, services are provided regardless of capacity to pay. Community Transport maintain wheelchair accessible buses as well as reliance on the use of volunteer's vehicles in addressing needs. They can also  enter into' arrangements with taxi operators to address specific circumstances. 1800-227-774 Visit
Companion Card The Companion Card allows people who have a significant and lifelong disability to take a carer on public transport and to recreational activities and events for the price of a single ticket Companion Cards can be presented at participating organisations where cardholders will not be required to pay an admission fee for their companion who is providing attendant care. 1800 893 044 Visit
Disability parking Australian Disability Parking Scheme People unable to walk unaided or whose health becomes affected by walking. Eligibility requirements may vary in different States. Your General Practitioner Visit
Appliances and Equipment  for disabled people  Each State has similar programs. In NSW the program is administered by Enable (formerly known as PADP) These Government initiatives assist eligible residents who have a life-long or long-term disability, to live and participate within their community by providing appropriate equipment, aids and appliances – includes mobility aids, scooters and wheelchairs.  Contact your local GP, hospital or community occupational therapist.  1800-362-253 Visit
Handybar and some related relatively inexpensive products i.e swivel seat, car caddie and Step-Up Quad Cane to assist with car transfers Stop struggling to get out of your car. Watch video The Handybar is a strong personal support handle to assist with car transfers. It is constructed of a forged steel shaft and it has a soft non-slip grip handle for safety and comfort Your local Chemist or disability aids supplier Visit
Mobility allowance Centrelink Assists people with disabilities who are in paid employment, voluntary work, vocational training. 132 717 Visit
National Public Toilet Map Dept Health and Ageing as part of the National Continence Management Strategy Shows the location of more than 14,000 public and private toilet facilities across across Australia. Useful information is provided about each toilet, such as location, opening hours, availability of baby change rooms, accessibility for people with disabilities and the details of other nearby toilets. 1800 990 646 Visit
Regional Excursion Daily (RED) ticket From 4 January 2009 Rural and Regional Bus Service Contracts require bus operators to issue a new type of ticket, the Regional Excursion Daily (RED) ticket. The RED ticket is a $2.50 all day multi-ride ticket for use on bus services provided under Rural and Regional Bus Service Contract B (old "Commercial Service Contract") for people who hold a valid, Pensioner Concession card, NSW Seniors card, War Widower/s card (NSW or Victoria) : 131 500 Visit
Second hand wheelchair accessible vehicles e-Bility.com is a network of people and organisations interested in disability issues.  This site includes an overview of a wide range of second hand wheelchair accessible vehicles. Well worth a browse as it provides a useful 'snapshot' of the diversity of options that are available along with pricing indications. 02 9810 2216 Visit
Swivel Seats that can be installed in conventional vehicles - watch  video Examples include Turning Automotive Seating - TAS. TAS is a system that provide people with mobility/transfer problems  with easy access to an automotive seat. For higher vehicles, this is accomplished by the seat rotating, coming out of the vehicle, and down toward the ground. For lower vehicles, the seat simply rotates out over the door sill. In either situation, the seat is easy to access.

Check with your local automotive dealer or Independent Living Centre

1300-885-886.

Example
Taxi Transportation Concessions Concessions vary significantly by State but all relate to people unable to use public transport because of a severe or permanent disability. For example in NSW the taxi industry is compensated for assisting people with disabilities by way of a 'bonus' payment for each pick up ($15.00), rebates to passengers of 50% of the fare cost up to $60 per trip and assistance with vehicle acquisition costs  Your General Practitioner Visit
Vehicles designed for the transportation of people in  wheelchairs There is an increasing demand for access to wheelchair accessible vehicles especially where someone is unable to independently transfer to and from a conventional vehicle..   There is a need to encourage the broader based adoption of 'multi purpose'  vehicles that are also wheelchair friendly. A strong case can be made for such purchasing policies to be adopted by agencies and other organisations whose clients/services involve the disabled or aged.    Example
Hire of Wheelchair Accessible Vehicles Flashcab Rentals  A range of wheelchair accessible vehicles can be rented from Sydney, Brisbane, Adelaide and the Gold Coast for short and long term hires. A range of vehicles and rental plans are available  1300 352 742 Visit


 
BACKGROUND INFORMATION - A Case Study - Transport Needs of a Regional MS Community - NSW Australia
 
SURVEY OF REGIONAL TRANSPORT NEEDS -  People who travel in wheelchairs or use mobility devices/aids
In October 2009 Northern Rivers Community Transport commenced research in order to find out more about the transport needs of residents in the Northern Rivers who travel in wheelchairs or use mobility devices/aids. This knowledge is being used to develop services or advocate for appropriate services within the region. The research team encouraged imaginative feedback about ways to improve services. The project includes the following feedback from the regional MS community (including that arising from the Pathways Project) as endorsed at a meeting of the Northern Rivers Multiple Sclerosis Support Group on Wednesday 25 November 2009. The preliminary results of this research were reported  in February 2010.
TRANSPORT NEEDS OF MS COMMUNITIES
Longitudinal studies show that around 50% of people with MS are independently mobile after 15 years and can live normal and productive lives. The MS related health care needs for this population grouping are broadly addressed via GP's and, increasingly (for those with access to the internet), by a range of readily accessible information resources. For the newly diagnosed, the MS Society, in collaboration with medical specialists and GP's, can play an important role. For the 50% (including many newly diagnosed) who are not able to live normal and productive lives, transport and mobility related issues can play an important role. This area of the Road Map examines some of these issues.
CLARIFYING THE ISSUES
In February 2008, in response to concerns that shortfalls in regional service delivery were having a significant impact on the well being of pwMS, the Northern Rivers Multiple Sclerosis Network of Care launched the Pathways Project to research, clarify and communicate about the effectiveness of regional referral pathways in enabling people with MS (and their carers/families) to access services beneficial to the ongoing management of MS. The project has a primary aim of increasing access of people with MS in the Northern Rivers area to services which improve their Quality of Life perceptions. Transport related deficiencies, especially for those with significant to severe levels of disability, were identified in the top 5 action priorities. 
FEEDBACK FROM THE REGIONAL MS COMMUNITY - THE BROAD ENVIRONMENT - 
 

Assisted mobility involving wheelchairs, scooters, taxis and community transport

*

Powered wheelchairs and scooters are frequently used by those wishing to commute within their immediate localities and who are sufficiently independent to manage this.
* While conventional (non powered) wheelchairs are also used at home their use in the community is often related to disability level. For example, an inability to safely transfer to and from a conventional vehicle means that external use is largely dependant upon the availability of wheelchair accessible vehicles, including taxis and community transport
* While NSW government taxi concessions are available they involve no more than 50% of the cost of each trip up to a maximum concession of $30 per trip. While this may be adequate for short trips it does not address the distances people may need to travel in this region.  For example, for someone living at, say Lismore, to travel to Ballina, the return cab fare using a wheelchair accessible cab can be around $150 plus- after rebates the cost is around $90 - this is not feasible for someone relying on income support and requiring wheelchair accessible transport. Even for regular 'short trips' of around 3 per week the annual cost can be around $1000 after concessions.
* Community transport does not currently effectively address these problem as appropriate wheelchair accessible vehicles are understood to be at a premium.
* The different 'jurisdictions' represented by community transport organisations  (based on local government areas) sometimes created artificial and frustrating boundaries in addressing genuine needs.
* For those in the workforce (including voluntary work) there is also Commonwealth government assistance to individuals - the mobility allowance of up to $111 per fortnight - to encourage workplace participation by offsetting some travel costs
* At times, some individuals have been able to broker specific 'deals', often with the assistance of supplementary funding and 'fixed price' quotations by taxi organisations
TRANSPORT NEEDS ARE SPECIFIC TO INDIVIDUAL CIRCUMSTANCES
An inability to participate in support group meetings was often mentioned as one of the consequences of the lack of appropriate transport. This is not surprising as the MS Standards of Care refer to the importance of support groups in the following context. Support Groups should be set up and facilitated by MS organisations as an activity relevant to the key results of gaining access to support and informed advice and contributing to self management. Participation in such groups also assists with networking as a foundation for community participation. Notwithstanding this feedback, decisions about access to appropriate transport are specific to individual needs and circumstances. The needs of the MS community change over time necessitating ongoing programs of lifetime continuous care. The issue is that equitable access to appropriate transport should be available irrespective of disability level.
ESTABLISHING EQUITABLE TRANSPORT COSTS
In NSW, rural and regional bus operators are subsidised to provide all day multi-ride excursion tickets to passengers holding pensioner concession cards at a cost to the passenger of $2.50 per day.  It is, however, rare for pwMS (in the target population) to benefit from this as 'pick up from home' via a wheelchair accessible vehicle is needed. The taxi industry is similarly compensated for assisting people with disabilities by way of a 'bonus' payment for each pick up ($8.47), rebates to passengers of 50% of the fare cost up to $30 per trip and assistance, in some regional areas, with vehicle acquisition costs. Access to the taxi scheme is via books of vouchers that may need to re-ordered up to 10 times a year by frequent users. Deficiencies in the taxi scheme were identified as unrealistic limits on subsidies (especially in rural areas), a somewhat cumbersome voucher system and a sometimes shortage of appropriate vehicles. These upper limits were upgraded with effect from 1 July 2016.
By contrast it is noted that Victoria, in December 2008, doubled the taxi fare subsidy from $30 to $60 per trip subject to passengers paying 50% of the fare.  There is an annual 'cap' of $2,180 with discretion for exemptions/variations in specific circumstances - for example wheelchair users do not have an upper limit.. The Victorian scheme operates via a 'card' system which costs $16.50 and is valid for six years. The taxi industry is further compensated by way of bonus of $14 for each pick up. Rural subsidies, up to $44,000 are available (subject to conditions) to encourage the provision of additional wheelchair accessible taxis. Access to this scheme appears to be well targeted to the needs of those in wheelchairs.
In South Australia a 50% taxi fare subsidy is available for people who are able to walk (not confined to a wheelchair) while a 75% subsidy is available for people who are confined to a wheelchair. Similarly, in Western Australia there is a general 50% subsidy while people who use a wheelchair or scooter may be entitled to a 75% subsidy. In Tasmania the subsidy is 60% across the board. 
A FOUNDATION TO BUILD UPON
The foregoing 'snapshot' of bus and taxi services in several Australian States highlights a growing recognition of the importance of targeting transport subsidies to the needs of people with mobility related disabilities especially those who are not able to use public transport or conventional passenger vehicle in order to carry out activities fundamental to daily living. Those relying on wheelchairs and who are unable to transfer to conventional forms of transport are one case in point. It illustrates the importance of a multi tiered approach - rather than a 'one size fits all' philosophy. It recognises the importance of industry based targeted financial incentives, including investment in capital expenditure and bonus payments for each pick up. It also recognises that rural areas may present special circumstances. A direct subsidy to some transport users (the mobility allowance) is included in the mix.  A number of 'common' benchmarks are apparent along with associated performance standards. While the emphasis is primarily on the taxi industry these benchmarks may well have broader application in fostering access to appropriate transport for those most in need. There is a good foundation to build upon.
COMMUNITY TRANSPORT 
Community Transport provides services that relate to the needs of the target group with the aim of of enhancing independence and avoiding premature or inappropriate admission to long-term residential care. While a contribution from clients is sought, services are provided regardless of capacity to pay. Community Transport maintain wheelchair accessible buses for group transport and place significant reliance on volunteers and their vehicles to address individual needs. Volunteer's vehicles are generally not wheelchair accessible. Community Transport can, however, enter into 'ad hoc' arrangements with taxi operators to address specific circumstances. Problems (primarily cost related) in accessing wheelchair accessible taxis can result in 'flow on' pressures for Community Transport and other funding bodies seeking to assist those with disabilities. 
ADDRESSING HIDDEN COSTS THAT INCLUDE TRANSPORT COMPONENTS
Feedback also highlights circumstances where 'hidden' costs can be a contributing factor in limiting access by pwMS to necessary support. For example, where a disability (or related circumstances) is such that it is not practicable to visit a service provider then arrangements are often made for 'home visits'. The issues addressed by pwMS are broad as are the related support services. Where such visits are covered by government funded services, i.e Home Care, Community Nurses, Medicare, etc, then this is usually not a problem. However there can be significant access problems where services are provided by the private sector - especially in factoring in costs associated with travel and the additional time sometimes needed to deliver a service, i.e podiatry and remedial massage -  there are many others
IMPACT ON SERVICE PROVIDERS
We regularly heard that these 'hidden costs' often dissuade service providers from offering much needed services. What is needed is a system that recognises these hidden access barriers by providing incentives for a broad range of service providers to address these needs. Paradoxically, people in need of this support may not make significant demands on subsidised taxi services. It was suggested that the concept applicable to the taxi industry be extended via a system of 'access concessions' (perhaps voucher based) to those where home based service are the only option. Rather than 'predefine' applicable services, flexibility is needed to ensure services address individual quality of life expectations.
A GROWING NEED
Over the past decade there has been a dramatic increase in the nature of mobility aids especially motorised scooters. Motorised wheelchairs have also become more functional, frequently fabricated to individual needs. One the downsides of this is that it is often difficult to transport this equipment in conventional motor vehicles especially where the user is unable to independently transfer to and from a vehicle. This scenario is occurring with increasing frequency leading to an increasing demand for access to wheelchair accessible vehicles where the travel destination is beyond the reasonable operating environment of a scooter or wheelchair. The growth of an 'aged population' accentuates this need
INCREASING THE POOL OF RELEVANT VEHICLES 
While undoubted improvements are still needed in the taxi industry a strong case can also be made for government incentives that stimulate the growth of the overall pool of  'multi purpose' passenger vehicles that are wheelchair friendly. To date, government incentives in this area have been directed primarily towards the taxi industry.  The recognition of a broader need should be reflected in government purchasing policies relating to the acquisition of vehicles. There is a case for other organisation whose constituency includes those requiring wheelchair accessible transport to follow this course. The acquisition of such vehicles by community based organisations and private individuals should also be supported. Over time, incentives of these types could dramatically impact on many of the problems encountered by the Pathways planning team. So much the better if Community Transport organisations were able to draw upon such a pool. It is also an area where service clubs could play a role. 
 THE WAY AHEAD - A Discussion Starter
There are dramatic differences in the taxi concessions available NSW as compared to other States, especially Victoria. At first glance, it could be argued that the adoption of a state wide model substantially the same as Victoria could be an important next step. However, the 50% cap does not address travel distances in this region as compared to those in metropolitan areas. It is also noted that the recently introduced rural and regional bus concession scheme caps daily fares at $2.50 irrespective of distance travelled - it seems unfair that people whose disabilities preclude them from accessing this scheme can incur uncapped costs when using government subsidised taxi services. Lifting the cap to 75% (as per S.A and W.A) does not effectively address this issue. 
The transport deficiencies highlighted by the Pathways project relate to pwMS with significant to severe levels of disability - this group broadly equates to the special categories identified in most states (apart from NSW) as requiring higher levels of financial support associated with access to wheelchair accessible taxis. It also broadly equates with the categories of people supported by the Program of appliances for disabled people (PADP). While there is an annual PADP co-payment it is capped at $100 per annum irrespective of the dollar value of equipment supplied. It has been suggested that a program that similarly caps the annual cost of using wheelchair accessible taxis may be the best way to ensure equitable access to appropriate transport for those with significant to severe levels of disability. As with PADP, such a program would be targeted to those most in need with upper limits to avoid abuse. 
CREATING BROADER AWARENESS OF THE ISSUES
In January 2010 a submission, on behalf of the regional MS community reflecting the aforementioned issues, was lodged with the NSW parliamentary committee enquiring into the NSW taxi industry. In February 2010 Northern Rivers Community Transport published the results of a broad based survey to find out more about the transport needs of residents in the Northern Rivers who travel in wheelchairs or use mobility devices/aids. In June 2010, the NSW parliamentary committee handed down findings that, unfortunately, did not effectively address the regional transport needs of people who are unable to transfer to conventional vehicles and who rely exclusively on wheelchair accessible vehicles for activities fundamental to daily living. A task force has been established with the aim of coming up with regionally workable, achievable solutions and plans in addressing regionally identified needs. A major priority is to increase the overall pool of wheelchair accessible vehicles  

 

Related Reading

 

Lifetime Continuous Care
MS Australia, in a 2008 submission to the Australian Government, highlighted the need for improved coordination in the delivery of dedicated lifetime continuous care programs and services (including respite) for people with MS. It went on to say that Australians living with MS and their families need viable alternative care models to those currently available. Many support programs are designed for static disability groups or ageing, and do not cope with increasing and changing needs. The submission observed ‘people with MS pose a significant challenge due to the changing nature of their condition which does not respect waiting lists’  A priority in dealing with the unmet demand is overhauling the interfaces of the various care and support programs with and across government jurisdictions.
 
Pathways Project
In February 2008, in response to concerns that  shortfalls in regional rehabilitation programs were having a significant impact on the well being of pwMS (especially those with moderate to severe levels of disability), the Northern Rivers Multiple Sclerosis Network of Care launched the Pathways Project.   The primary aim of the Project is to increase access of people with MS in the Northern Rivers Area to services which improve their perceptions of Quality of Life. On 17 July 2008 the Pathways planning group released a discussion paper titled 'Towards a More Cohesive MS Network of Care in the Northern Rivers Region of NSW'  for use by service providers and agencies about how to better meet the needs of pwMS in the Northern Rivers. The paper provides an evidence based framework about the most pressing needs and options for addressing those needs.

 

 

  Facts Sheet RM1315MS
  Road Map Reference

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