Motor Neurone Disease Association response
Updated 22 February 2021
Question 1
Question 1a
For those who are eligible, is not leasing a vehicle through Motability a voluntary choice?
Response to question 1a
No comment.
Question 1b
Is the decision not to use the scheme related to a preference for using public transport or is it due to other factors?
Response to question 1b
No comment.
Question 1c
Are disability benefits used for other forms of transport or travel support; and if so what are the benefits of this?
Response to question 1c
We anticipate that in some circumstances people may put some of their disability benefit towards accessible taxi fares and other modes of accessible transport. This is beneficial for people for whom driving is not an option.
Question 2
Question 2a
For disabled people who are on enhanced mobility benefits, what are the main barriers to leasing a vehicle through the Motability scheme? Barriers could include financial, practical, information based or personal factors for example.
Response to question 2a
The Association has not conducted extensive research into the barriers people living with MND face when leasing a Motability vehicle. However, based on our knowledge of the condition, there are a few suggestions we can make.
We anticipate that there may be financial barriers for some people living with MND when looking to lease a Motability vehicle. Research conducted by Demos (2017) on behalf of the Association found that people living with MND and their families face a significant financial burden as a result of the disease and on average face extra costs of £12,000 a year. The allowances provided by PIP only go part of the way in meeting these costs, meaning some people will already be under significant financial pressure before interacting with the scheme. Additionally, given the severity of the disability it may be that people living with MND are more likely to need adapted and wheelchair accessible vehicles (WAVs), which may come at a cost above that of their PIP mobility allowance. This may then make leasing with the scheme unaffordable.
We also envisage potential practical barriers to being able to lease with the scheme. Being able to organise everything for someone with a severe disability such as MND can be challenging if, for example, they are house-bound or require constant care.
There may also be communication difficulties if the person with MND has lost the ability to communicate verbally. Given the often rapid disease progression, there may also be difficulty in planning for anticipated need, which may increase rapidly.
Practical barriers can also be experienced by people living with MND who are already on the enhanced rate of the mobility element of PIP but are coming to the end of their award. This may be because they claimed under the Special Rules for Terminal Illness (SRTI), which awards PIP for a maximum of three years, or because they claimed prior to the introduction of ten-year PIP awards for people with severe progressive conditions (introduced in 2018). The Association has come across a number of cases where someone’s needs have deteriorated to the extent that they need a new/different vehicle to meet their needs, but this has fallen within the final year of their PIP award duration under SRTI. They have then struggled to organise the lease of a new vehicle that will meet their needs as Motability will not generally renew a lease if someone’s PIP award duration is for under a year. In these instances, this has constituted a significant barrier to continued access to the scheme, despite the existing vehicle no longer being fit for purpose, and those individuals have struggled to cope and afford to get about in the meantime. They have had to go through great effort to try and negotiate a solution with Motability directly. We would like to see steps taken, such as fast-tracking and more flexible leasing options for people who find themselves in this challenging and stressful situation.
There may also be personal factors affecting the take-up of the scheme. People living with MND and their families may be facing a number of conflicting priorities, of which taking up the Motability scheme may not be the top of the list. There may also be emotional barriers to overcome, such as struggling to come to terms with the loss of independence that MND brings.
Finally, although not entitled to enhanced mobility benefits, there are older people claiming Attendance Allowance who, despite having significant mobility needs in many cases, are not entitled to the support that Motability offers because of their age. We would like to see this unfairness addressed. Older disabled people should not be discriminated against in terms of access to mobility support due to their age. Mobility support should be considered a right for all those who need it, particularly when the mental and physical health impacts of immobility and isolation are taken into account. We believe strongly that support under the Motability scheme should be extended to claimants of Attendance Allowance as well as PIP.
Question 2b
What are the key issues for those individuals who feel they cannot opt in to the Motability scheme?
Response to question 2b
No comment.
Question 3
How does participation/non-participation in the Motability scheme impact on the life of a disabled person?
Response to question 3
We believe being able to take part in the scheme can make a really important difference to people living with MND and their families. For the person living with MND, it may mean that they can get adaptations that enable them to drive and retain their independence and mobility for longer. If an individual is no longer capable of driving, it may mean that their ability to get out and about is maintained through having a Wheelchair Accessible Vehicle that a family member/carer can drive. There is extensive evidence of mental and physical health impacts of immobility, due to social isolation, loneliness and lack of physical activity
Question 4
Question 4a
How affordable are adaptations to a leased vehicle?
Response to question 4a
No comment.
Question 4b
Does the need for adaptations put people requiring these at a disadvantage in terms of using the scheme?
Response to question 4b
We believe that there may be a potential disadvantage due to having to wait for adaptations to be installed or having to wait for a Wheelchair Accessible Vehicle. As a rapidly progressive condition, people living with MND do not have time to wait as the disease progresses. 50% of people with MND die within two years of their diagnosis.
Question 4c
What grants are available for this group of people and what more can be done to support these needs?
Response to question 4c
We believe that introducing fast-tracking for people with rapidly progressive/terminal illnesses may help, or perhaps the establishment of ‘rapid response’ teams to speed up the process to meet urgent need and challenging/hard to resolve circumstances. This could include those who require a new vehicle within the last year of their PIP award under the Special Rules for Terminal Illness.
Question 5
For people who are not eligible, because they do not get the enhanced rate, is there a demand for opening up access to the Motability scheme?
Response to question 5
We believe there could be merits to opening up the Motability scheme to people on the standard mobility rate of PIP. It could smoothen the transition for people with progressive conditions such as MND who may start on a standard rate earlier on in their disease progression but will inevitably go onto the higher rate of the mobility component as their disease progresses, most likely under the Special Rules for Terminal Illness.
Question 6
Question 6a
How available and/or useful is the information on the Motability scheme?
Response to question 6a
No comment
Question 6b
Is support available to access this information?
Response to question 6b
No comment
Question 6c
How easy is the process involved in leasing a vehicle from Motability for disabled people with varying needs?
Response to question 6c
No comment.
Question 7
How does the need for and/or opportunity to benefit from the Motability scheme intersect with other characteristics such as:
- different experiences of disability – for example physical impairment, mental health condition, learning difficulty
- other characteristics – such as age, gender, ethnicity
- ‘geography’ – whether disabled people live in a rural or urban environment
Response to question 7
We believe there is an age issue given the scheme is generally only open to under 65s, as there isn’t a mobility element to Attendance Allowance. The Association gets feedback from our supporters about this, who feel strongly that there should be a mobility element to Attendance Allowance. There would be significant interest in accessing the Motability scheme from an older cohort of disabled people, including those living with MND.
Question 8
Do those using the Motability scheme benefit more financially than those eligible for the highest/enhanced rate who do not use the Motability scheme?
Response to question 8
No comment.
About MND
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MND is a fatal, rapidly progressing disease that affects the brain and spinal cord.
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It attacks the nerves that control movement so muscles no longer work. MND does not usually affect the senses such as sight, sound, feeling etc.
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It can leave people locked in a failing body, unable to move, talk and eventually breathe.
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Over 80% of people with MND will have communication difficulties, including for some, a complete loss of voice.
- It affects people from all communities.
- Around 35% of people with MND experience mild cognitive change, in other words, changes in thinking and behavior. A further 15% of people show signs of frontotemporal dementia which results in more pronounced behavioural change.
- It kills a third of people within a year and more than half within two years of diagnosis.
- A person’s lifetime risk of developing MND is around 1 in 300.
- Six people per day are diagnosed with MND in the UK.
- It affects up to 5,000 adults in the UK at any one time.
- It kills six people per day in the UK, this is just under 2,200 per year
- It has no cure.
About the MND Association
The Motor Neurone Disease Association is the only national charity in England, Wales and Northern Ireland focused on improving care, research and campaigning. We have over 9,000 members forming a powerful network that provides information and support for people with MND, their families and carers. We fund and promote research that leads to new understanding and treatments, and brings us closer to a cure. We campaign and raise awareness so the needs of people with MND are recognised and addressed by wider society.