Oireachtas Joint and Select Committees
Thursday, 7 July 2022
Joint Oireachtas Committee on Disability Matters
Inclusive Transport Schemes: Discussion
I welcome Deputy Ellis to the committee and I wish him well. I look forward to working with him. We spoke earlier at the private meeting. I look forward to positive engagement.
The purpose of today's meeting is to discuss inclusive transport schemes. On behalf of the committee, I welcome: Ms Catherine Cox, head of communications and policy, and Mr. Damien Douglas from Family Carers Ireland; and Mr. Pat Carty, chairman, and Mr. Kenneth Fox, CEO, from the Disabled Drivers Association of Ireland.
I remind members that they are only allowed to participate when they are within the precincts of Leinster House. In this regard, if members are joining us remotely, they should indicate whether they are within the precincts of Leinster House. Due to unprecedented circumstances, witnesses are joining us remotely, so we may run into technical difficulties. If that happens, I ask everyone to please bear with us.
I will outline the formalities regarding privilege. Witnesses are directed only to give evidence on the subject matter of these proceedings and to respect the parliamentary practice that we do not criticise or make charges against a person, persons or entity outside of the Houses in such a way as to make him, her or it identifiable. If they are directed by the committee to case giving evidence, they must respect that.
Members are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person outside of the House or an official in such a way as to make him or her identifiable.
Without further ado, I call on Ms Cox and Mr. Douglas to make their opening remarks.
Ms Catherine Cox:
I thank the committee members for the opportunity to speak today regarding inclusive transport for persons with disabilities. Our opening statements will focus specifically on the motorised transport grant and the mobility allowance - both withdrawn in 2013 - and Revenue's disabled drivers and passengers scheme. The latter is only remaining transport scheme available to people with disabilities and their family carers. We believe that denying people access to transport is, by default, denying them access to employment, education and the right to interact in their community.
The motorised transport grant and mobility allowance were introduced in 1968 and 1979, respectively, meaning that for 45 years they formed a vital part of the transport infrastructure that enabled people with disabilities to live independently in their communities. The Department of Health's announcement in February 2013 that both schemes would be discontinued because they were in breach of the Equal Status Act resulted in a profound loss to people with disabilities and their wider families. In many cases, adapted vehicles secured under the motorised transport grant were purchased and driven by a family member of a person with a disability. The removal of these financial supports meant that many family carers could no longer afford to purchase accessible vehicles or pay for the fuel or taxi costs necessary to transport their loved ones. As members can appreciate, this has been greatly exacerbated by spiralling fuel costs.
The withdrawal of both schemes was supposed to be a short-term measure. The failure to replace them during the past decade, despite many commitments to do so, has led to the illogical situation whereby those who received a mobility allowance prior to 2013 have been allowed to keep it, while others who are equally deserving and in need of transport support are locked out of the scheme. It also means that the only transport support available is the disabled drivers and passengers scheme, which is targeted only at those with severe physical disabilities, with no support available to those with intellectual or non-physical disabilities.
It has been recognised for many decades that transport costs are higher for many disabled people. Transport is also recognised as one of the essential services required to realise independent living.
However, research shows that the cost of transport limits their decision to travel. Many have to rely on family and friends, which reduces their independence.
Family Carers Ireland believes that a one-size-fits-all system for mobility support will not work. Neither will an attempt to shoehorn people with disabilities into existing transport schemes. Rather, we recommend the continued payment of a cash allowance. This would give people with disabilities and their carers greater choice and flexibility in the type of transport they choose to use. This is particularly important for those living in rural areas. Existing schemes, such as Accessible Community Transport Southside and Vantastic, should be fully evaluated. If they are found to meet the needs of people with a disability and their families they should be adequately funded.
The disabled drivers and disabled passengers scheme offered by Revenue is the only remaining transport scheme available to people with disabilities and their families. It provides a range of tax reliefs linked to the purchase of specially adapted vehicles, exemptions from motor tax and toll fees and eligibility for a fuel grant. These are all incredibly valuable provisions for people with disabilities and their families. Our issues relate to eligibility for the scheme rather than what it offers. The requirement to satisfy the overly stringent medical criteria associated with qualifying for a primary medical certificate, including the need to prove that a person is completely or almost completely without the use of both legs or hands, is exclusionist. Persons with disabilities, as defined under the UN Convention on the Rights of Persons with Disabilities, UNCRPD, include those who have long-term mental, intellectual or sensory impairments. The excessively restrictive criteria exclude this group from the scheme. Eligibility for the scheme should focus less on people's medical conditions and more on how they function in society. We call for eligibility for the scheme to be extended to include those with non-physical disabilities.
I will now hand over to Mr. Damien Douglas, who is a family carer for his two daughters.
Mr. Damien Douglas:
I thank the committee for the opportunity to address it. As a father of two severely physically and intellectually disabled children, my family benefits from the disabled drivers and passengers scheme. We are thankful for this. My twin girls, Una and Ailis, fit the criteria for a primary medical certificate which qualifies them for the scheme as passengers. We need a specially adapted long-wheeled vehicle with lift and clamps to transport them. They are both in wheelchairs. Without this vehicle, the girls would be prisoners in their own home because it would be impossible to bring them together anywhere on a bus or taxi. They attend day services but we have to bring and drop them because transport is not provided.
Many family carers look after children and adults who are no less disabled than Una and Ailis but because they have the use of their hands and legs they do not qualify for the primary medical certificate and, therefore, cannot participate in the scheme. They are on disability payments, their family carer qualifies for carer's allowance or benefit and their disabilities are undeniable but they do not qualify because they do not fit the very restricted criteria as laid down in respect of the scheme. Those who are autistic or display severe behavioural issues do not qualify. Gigantism does not qualify but dwarfism does. Often in areas of the country where there is no or very limited public transport, these families have no other options for transport. Access to transport is very important to go shopping and attend day services, medical appointments, social outings and religious events. Not to have appropriate transport or access to it is another form of discrimination for people of all disabilities. It is a form of imprisonment.
"Buy your own car", you might say. We already know that most full-time carers barely make ends meet and may not be able to afford this huge expense. In our case, to provide the type of vehicle we, as a family, require costs more than €50,000. This is not luxury but a necessity. Having access to the drivers and passengers with disabilities scheme may enable families to afford transport that meets their needs and lightens their burden a little bit.
I thank committee members for their time and attention. Ms Cox and I look forward to answering any questions or queries they may have.
Mr. Kenneth Fox:
I thank the committee for the invitation to attend today's meeting to discuss this very important matter.
The Disabled Drivers Association of Ireland was established in 1970. It is an organisation of people with disabilities and has approximately 5,000 members. As the name suggests, the founding members had a strong view that personal transport was key to fulfilling many of the principles now outlined in Article 3 of the UNCRPD. These include the freedom to make one's own choices, independence of persons, full and effective participation and inclusion in society, equality of opportunity and accessibility.
Throughout our 50 years in existence, we have campaigned on the disabled drivers and disabled passengers tax relief scheme and the mobility allowance and associated motorised transport grant. These are part of the committee's deliberations today. Having advised and supported thousands of applicants for the schemes we are well aware of the benefits they have provided as well as their shortcomings that put them beyond the reach of many with a genuine need. The schemes have their origins in the late 1960s, so it is not surprising that difficulties have been highlighted by the public, their representatives, the Ombudsman and the Supreme Court. Our vision, and the public vision, for a person with a disability has been completely transformed in this time. The principles quoted above represent only a small part of the vision outlined in the UNCRPD. The schemes represent the State's attempts to fulfil the requirements of Article 5, which states, "Specific measures which are necessary to accelerate or achieve de facto equality of persons with disabilities shall not be considered discrimination under the terms of the present Convention".
The mobility allowance has been suspended for more than nine years. Although it was a major support for the declining numbers who were in receipt of it prior to 2013, it is now a failed measure and a source of continuing inequality in that two persons with identical circumstances have different experiences. Someone who met the income requirements and acquired a qualifying disability in January 2013 may continue to receive it. Another person in identical circumstances who acquired an identical disability in April 2013 of afterwards is excluded. The mobility allowance shows recognition by the State that in order to achieve the freedom to make one’s own choices, independence, full and effective participation and inclusion in society and equality of opportunity, individually targeted specific measures on mobility are necessary to accelerate or achieve de factoequality of persons with disabilities.
While views are expressed that improvements in the accessibility of public transport and a broader availability of accessible public transport will address the needs of people with disabilities we argue strongly that personal transport measures are also necessary. The disabled drivers and disabled passengers tax relief scheme is the only remaining scheme supporting personal transport that is still open to new applicants. It has been very effective, as evidenced by its longevity, and provides support to around 15,000 participants. The scheme is, in principle, intended to fund the adaptations that are necessary for disabled drivers and disabled passengers. In practice it has provided general support to a disabled person to remain mobile. A simplified explanation of how the scheme works is that the tax relief provides a market advantage which compensates the disabled person for the adaptations employed. Provided full market value resales can be achieved with each vehicle change disabled persons can maintain their transport even on a relatively modest income. If people with disabilities on low incomes are in receipt of the mobility allowance this further helps contribute to the running costs.
At its height, the tax relief might have contributed relief of 35% of the cost of a vehicle. However, the scheme is very susceptible to changes in vehicle registration tax, VRT, and VAT policy, including the margin scheme, and new taxes such as the nitrogen oxide emissions charge. Thus, the allowances can be eroded or the market advantage reduced. The allowances are now closer to providing less than 25% of the purchase value of the vehicle in most cases.
Even when the scheme offered the greatest relief relative to the total cost, the applicant needed the resources to fund 65% of the cost of the vehicles. Vehicles with the least adaptation have wider appeal in the resale market and therefore achieve better relative resale prices. Thus, the scheme tends to favour those with the most resources and the least vehicle adaptation. The motorised transport grant was often used as a way of getting on the first step of the mobility ladder of the tax relief scheme. The uptake of the motorised transport grant was low, with about 300 applicants per annum and the word "grant" is probably a slight misnomer, as it was essentially a cash advance on the mobility allowance to contribute to the purchase of a vehicle. It should be remembered that as a means to get started on the tax relief scheme, the grant might only be claimed once. For subsequent purchases, applicants would rely on the tax relief scheme and keep their mobility allowance for vehicle running costs.
For those unable to access the scheme, a car purchased using the motorised transport grant might be kept for a long time. I am aware of one example where a car purchased with grant aid is now 14 years old. The Disabled Drivers Association of Ireland, DDAI, still gets inquiries from people seeking to repeat the process nine years after the mobility allowance scheme was closed to new applicants. The tax relief scheme has become less attractive to those with limited resources because of the greater initial capital required and the absence of a mobility allowance to assist those with limited incomes with maintenance costs.
The most recent criticism of the tax relief scheme has concerned the access criteria. These have changed little since the 1960s and select a limited number of conditions as approximations of those who might require adapted vehicles. The spectrum of persons with a disability needing a vehicle adaptation has broadened considerably, and this is what was demonstrated in the Supreme Court judgment. Necessary and expensive adaptations to enable disabled people to drive are not all related to the ability to walk and there are equally necessary adaptations on the passenger side that have more to do with environment and safety than mobility. Equally, because there is no correlation between the medical criteria and the extent of adaptation required, there is little correlation between the level of adaptation required and the allowances offered. The graduation of benefits is solely on the driver’s side, which is in itself iniquitous.
An emerging issue with the tax relief scheme is that its design is firmly rooted in fossil fuel vehicles, such as the fuel grant, for example, and its mechanisms are not well suited to the current tax structure for electric vehicles in terms of market advantage. Its direction of flow is counter to Government policy regarding motor vehicles in general. Thus, if Government policy is successful, disabled persons need to be equally incentivised to adopt electric vehicles. It is not intended to dwell on the importance of social interaction or access to education and employment because the whole population now certainly knows the experience of what a predecessor of mine referred to as being stuck at home beside the fire. It is, instead, more important to return to the necessity for personal transport supports, as distinct from extended accessible public transport. Anyone living in rural Ireland is familiar with the necessity of personal transport for access. When it comes to disability, however, the same can be true in an urban setting.
The DDAI is an administrator of the disabled person’s parking permit scheme under legislation for more than 50,000 permit holders. In total, between our fellow administrators in the Irish Wheelchair Association, IWA, and our group, there are almost 120,000 permit holders. We have some experience of having to operate within the constraints of legislation and regulation but one of the definitions in the context of existing permit holders is the inability to walk more than 50 m. It is unlikely that more than a small proportion of those permit holders live, work and are educated within 50 m of a public transport access point, nor is it expected that access points will or should be placed at intervals of 50 m. The fact is that for many the alternatives of walking, cycling or hopping on an electric scooter do not exist for a person with a disability. Equally, it is well accepted that there are those for whom public transport systems in themselves provide too challenging an environment. In this context, personal transport is an important and necessary alternative. Families and individuals have proven themselves as willing as any other citizens to invest in their own transport, but in many cases there are significant additional costs - in some cases more than the cost of the vehicle purchase itself.
If the State is to meet its obligation regarding specific measures which are necessary to accelerate or achieve de facto equality of persons with disabilities, supports need to be in place for those for whom public transport, however accessible, is not a viable alternative to achieving that equality of access. The experience concerning the mobility allowance has been traumatic for the community and the legacy of that experience is that, whatever the flaws in the disabled drivers and disabled passengers tax relief scheme, and those are great, it is currently the only support available. The greatest fear of those relying on the scheme is that faced with too many complications, the State will simply drop the scheme altogether. The suspension of the scheme for new entrants for some months, while unavoidable, did not allay any of those fears that a repeat of the mobility allowance experience was about to occur.
At present, combining the mobility allowance and tax relief schemes, fewer than 20,000 persons are supported in this way. In the United Kingdom, just over 2 million people receive a payment specifically related to mobility, which is roughly equivalent to 150,000 people in the Republic. These payments in turn provide access to other self-supporting vehicle leasing mechanisms, of which approximately one third avail. A targeted personal transport support system is needed for people with a disability. Equally, clarity is needed on who should be supported and why they need to be supported, as well as better integration between the needs of the individual and the level of the support provided.
I am delighted to be here. I will have to feel my way as I go. I thank the representatives of the DDAI and Family Carers Ireland, FCI, for their presentations. I come across this issue regularly in my constituency and in other areas. I remember there being issues with the mobility allowance and motorised transport grant as far back as the time when I was a councillor for 12 or 13 years, starting in 1999. I also remember chasing the mobility grant and being able to get taxis for some people to and from places. A recent case I dealt with involved questioning the HSE on transport. The response stated that there was an ongoing issue for some individuals in assessing HSE-funded day services and rehabilitation training programmes. Furthermore, it stated that no resources were allocated for the provision of transport to new or returning entrants. This is a ridiculous situation. Doing away with the mobility grant was a disaster. We would like to see it reinstated in some form.
We constantly come across issues when it comes to transport. Every stop should be pulled out to help people with disabilities. There should be no barriers to how we help people and it does not matter what the disability is. When it comes to severe disabilities, the witnesses outlined that it is possible to avail of the present grant. It is different for anyone outside that context.
It is a whole battle to get any sort of grant. What happens when the vehicles reach a certain age and must undergo the national car test, NCT? If vehicles have to go after four years or three years to undergo the NCT, what way does that work? Do people get help with that? Is any help available in that regard? What amount of grant is available at the moment if a person is applying for a grant for someone? The witnesses mentioned family members or otherwise. There seems to be restrictions in terms of family members, which I find a bit difficult. Only recently, my sister bought a disabled vehicle and had to pay for it because the whole process was too messy. She gets a certain amount back but it did end up costing her a substantial amount of money. People with disabilities are on, in many cases, €208 or whatever it is. It is not even enough to get by on. With inflation the way it is, obviously, that is a massive thing.
I also want to ask about Vantastic. I recall having made loads of arguments in the past about Vantastic but it does not take people to, say, day centres. Is there a role in which Vantastic can be utilised or funded better in a way that it could fill a gap by taking people to and from appointments or otherwise? I am just not sure what the position is.
I was taken by the fact that once artists who have disabilities earn more than €140, they are penalised in whatever State payment they receive, which I find really hard to understand. They should be given the security of having a payment that is not touched in order that they can get on with whatever they are trying to do or whatever type of work they are doing. Penalising them like that is absolutely wrong.
Ms Catherine Cox:
I will address one or two and then maybe Mr. Fox might address the more technical questions around the grant, etc. I will go back to transport to day services and schools where people have children with disabilities because I know this is a huge issue for families, particularly down the country. Many families tell us they may be offered a day service but they are told they have to provide their own transport and, in some cases, that is just not possible due to the costs, in particular. I know that is a huge challenge for families.
In terms of Vantastic, and there is another scheme called Accessible Community Transport Southside, ACTS, we said they should be fully evaluated to find out how good they are. If they are deemed to meet the needs of people with disabilities and their families, we believe they should be adequately funded. At the moment, however, they are not. Therefore, they have gaps in their funding and that is why some of them have either stopped or folded. I think there is room to look at those to see whether they could provide accessible transport to day services, for example, and schools as well.
To go back to the cost of a disability in a home, we did research very recently with the Vincentian Partnership for Social Justice. The findings were that it costs €244 per week more to provide care for a person with a disability in a home than it does in another home without a person with a disability. That is €244 on top of the other costs, and one of those costs in particular relates to transport. Another cost is buying in therapy services. There is no doubt that there is a cost in disability, which chimes with the Indecon report on the cost of disability.
I cannot believe we are sitting here nine years later and we still have no transport supports. The mobility allowance and motorised grant have not been replaced. It is inequitable, unfair and outrageous that there is still no support there to replace that. Rather than bring standards up and bring everybody into the loop for the mobility allowance, it was stopped completely and everybody was ruled out. That for us is a huge injustice and inequity.
Mr. Kenneth Fox:
On the technical side, I will just echo something Ms Cox said to give an example. I remember when the mobility allowance was in progress. There was a student in Dublin who was quite happy to use public transport to get to lectures. There were vagaries that might occur at times with being left behind at bus stops or not being able to get on certain buses and things like that. For examinations, however, this student would get Vantastic or the Lucan Disability Action Group, as it was at the time, to pick them up and take them from door to door. That kind of reliable door-to-door transport is what Ms Cox is speaking about. The mobility allowance was saved and was crucial to those kinds of door-to-door transports when a person had to be somewhere at a certain time. Individuals saved that money for those occasions.
To go through the grant values for the tax relief scheme, the grant level for a passenger is a fixed €15,000 or €16,000 now. The point I was making was that the cost for a person's adaptations, say, for a vehicle that has a lower floor and is wheelchair accessible with lowered floor accessibility, is probably €30,000. Tax relief is €15,000 but a person gets the same relief if he or she is putting in a swivel seat, which is probably less than €2,000 - maybe €1,500. There is a notion that there is not actually any graduation. There is a bit of graduation on the driver's side so, in fact, the driver gets €10,000 for his or her adaptations. If a person is in a wheelchair accessible vehicle in which he or she is driving from a wheelchair, he or she will get €15,000. The passenger has to keep the vehicle for two years, but the driver must keep it for three years. If that person has what are called extensive adaptations with specialised braking or specialised steering and wheelchair accessibility, there is a grant of €22,500 but the driver would have to keep that vehicle for five years. Again, that is a lot of graduation on the driver's side in terms of limits and the length of time a person has to keep the vehicle, but there are none on the passenger's side.
The whole scheme presupposes that a person will only qualify if there is an adaptation to be made to the vehicle. Therefore, the basis of the original scheme was compensation for adaptation. The use of the scheme has changed. In general, in terms of a wider view of what people need for transport and why people need transport, that is not the structure of the legislation for the scheme. There is, therefore, nothing for all those categories of people about whom Ms Cox spoke in her presentation.
I thank Ms Cox, Mr. Douglas and Mr. Fox very much. I apologise; I missed some of the discussion because Senators were called to a vote in the Seanad. Forgive me if I repeat or ask questions about which the witnesses have already spoken.
I completely agree with all the points I have heard from the witnesses with regard to the absolute need for people with disabilities to be able to access both personal and public transport and the different schemes. It is quite shocking to think that the two schemes were done away with in 2013 because at that stage they were not considered equitable, and at this point there has still been nothing to replace them. Mr. Fox gave the example of two people in exactly the same situation who were three months apart and one could access the scheme but one could not.
I remember dealing with one mother whose child with special needs needed to go to a particular school but was not covered under the school transport. She had to drive her daughter behind a school bus bringing other young people who were able to avail of the mobility allowance but her daughter could not. There were spaces and seats on the bus. As she said, every morning she drove behind this bus for 45 minutes. It did not make sense. I am very glad the Minister of State at the Department of Health with responsibility for disability, Deputy Anne Rabbitte, has convened that group to look at the whole transport area. Have the witnesses' groups been included in that group? I hope representatives from the Disabled Drivers and Disabled Passengers Association and from Family Carers Ireland have been included because that lived experience is really important. What key changes coming from that group do the witnesses believe need to be introduced to ensure a needs-led and rights-based scheme?
I have one or two other brief points. In terms of people being isolated and connectivity, it is important to every one of us but particularly to people who are isolated in other ways. It is heartbreaking to see people with disabilities being excluded sometimes from work, from social events and from being able to do the very basic things they want to do with dignity and independently. I worked with Special Olympics Ireland for a period of time and looked at the challenges. Where there was a Special Olympics club, it was very difficult for athletes to go to the activities because of the issue around transport. There seemed to be a view generally that the Local Link service was not fit for purpose, which is such a shame. We have quite a good service in Kildare. That is possibly down to the chief executive, Mr. Alan Kelly, but there is a lot of scope and potential to make it better. Could the witnesses talk a little about that? Obviously it is hugely important we have wheelchair accessible mini buses day and night to provide transport into hubs to train stations, etc. Yesterday we had the Oireachtas Work Learning programme, OWL, graduation where we have had young people with disabilities from both WALK and KARE working in Leinster House. It is wonderful and six of the ten have got jobs but I spoke to some of them about how they actually got into Leinster House. One particular issue is lifts at stations. Newbridge is my own local station and I am constantly on to it because the lift is not working. It is hugely important to get those basic things right.
I thank Mr. Douglas for talking about his daughters and I completely understand where he is coming from and the need that is there. We are all having a problem with availability of taxis at the moment but maybe he could talk a bit about the availability, accessibility and cost of taxis and about the specific areas around the rural transport scheme, the group the Minister of State, Deputy Rabbitte, has set up.
Mr. Damien Douglas:
There were a few things in all of that and I probably will not get to all of them. We have spoken about the needs of people with disabilities and their needs for transport and how bad that it and how important it is to have a grant of some kind that allows a vehicle to be purchased, made accessible and then to be run. The primary medical certificate is very restrictive. You have to have either no use of your hands or legs, have only one arm or one leg or be a dwarf, because you cannot reach, to qualify. I am not being funny there. If you are 7 ft. 6 in. and are totally disabled, you do not qualify because you have the use of your hands and legs. If you have severe intellectual disability but you can walk and talk, you do not qualify or your mother does not qualify on your behalf, which is a huge anomaly. We are looking at the needs of the people with disabilities themselves and at the needs of those who care for them, which is where I come in to it. My girls cannot go out on their own. They can do nothing for themselves. Many people with disabilities need a considerable amount of care and assistance and, in the main, that is provided by their families or by other professional caregivers. The people with the disabilities themselves are not able to do it. Likewise with disabled drivers, those adaptations they need are essential to give them the mobility and the independence they need. We know approximately only one third of carers get the carers allowance and that is because of means testing. Two thirds are probably working and that disqualifies them. Any changes or cost involved have to be met from their means. Those who qualify for the carers allowance, and we are very grateful for it for those who do, are still means tested and means limited. This means a person does not have a huge bank account or money in their back pocket to provide, for example, the €50,000 for the van we needed.
Mr. Fox mentioned the importance of the grant initially, in that it gave families a lift up towards the purchase of a van. Every two or three years when the van was replaced, the amount to be covered was less. The value of the van was such that the amount to be paid for a new vehicle was less, in that the resale value was good. This is only if you are lucky enough to be able to get an appropriate vehicle.
In regard to public transport, I live in Lucan and if I want to go into town with my two girls on what used be the 25A bus, but which is now the C1 or C2, I cannot do so because no bus will take two wheelchairs. That is the reality. For family days out, if we did not have a vehicle, we would be stuck at home or have a nice long walk into the Phoenix Park, which is not manageable. If I want to get a taxi, I can get a wheelchair taxi fairly easily but no wheelchair taxi will take two wheelchairs. There is a dearth of availability there, never mind the difficulty trying to get a wheelchair taxi on occasion, even in Lucan. Lucan Disability Action Group will provide transport but you have to book it well in advance and most times it is not available because they are already providing transport on a contractual basis to other families or other services such as to Stewarts or St. John of God. When you need them, those vehicles are not always available. If you are trying to organise your life around a time that suits your family, you are banjaxed. I thank the members for listening to me.
Ms Catherine Cox:
Senator O'Loughlin asked if we were included in the group. To my knowledge, we are not. We certainly have not engaged yet but Family Carers Ireland would be delighted to do that. We were asked what changes we would like to see. We would like the mobility allowance in particular to be replaced by a flexible system based on choice because a family in Donegal might need something very different from a family in Dublin, for example. Whether it is an allowance, a voucher or a cash allowance, if people need to pay for a taxi, adapt their car or whatever, that system needs to be flexible enough to look at individual needs rather than pushing everyone into one type of system. It is a bit like respite around the country. There is definitely a postcode lottery. Where you live determines how good or bad the service you will get is. We need to see consistency and equity of access, right across the country and that is why it is so important that the mobility allowance and the motorised transport scheme are replaced. We need a system that works for people with disabilities and their families rather than a system that is easy to manage and maintain.
Mr. Pat Carty:
I am a member of the Disabled Drivers and Disabled Passengers Association. I became involved back in the 1980s and luckily or unluckily enough, I qualified for a primary medical certificate and was then able to benefit from the disabled drivers scheme.
Coming from County Sligo, I thought that we had to have our own transport. In the past number of years, we have been involved with the wheelchair hurlers. I play for Connacht and know lads in Leinster. If I am in a wheelchair and another lad is in a wheelchair, we cannot pool together with the wheelchairs, as Mr. Douglas said about his daughters. It is vital that everyone is looked at. Everyone needs his or her own transport be it in a rural or urban area and this is vital. Mr. Fox, Ms Cox and Senator O'Loughlin have made great points here. We have to hand it over. The motorised transport scheme was great to get a leg on the ladder. In 1988, thanks to family members, we chipped in and got the money together to get me my first car. I then qualified for the rebate on that. I was on the ladder and now to think that it is all gone. It might only be a once-off payment that people need just to get on the ladder. It is sad to think that there were better provisions in the 1960s than there are in 2022.
Mr. Kenneth Fox:
In terms of what Senator O'Loughlin said and a point I made in my presentation, whatever supports are available they should be integrated and have flexibility. Under the UK system, a payment can be converted to lease a vehicle under a special scheme. The payment should be able to be converted into a capital amount if needed, which is what the motorised transport scheme allowed. There should be those such flexible arrangements and an integrated system whereby the support people get is related to their needs rather than, as Ms Cox said, a blanket scheme that is easily administered.
I thank the witnesses for their insightful statements to the committee. I raise this among Fine Gael Parliamentary Party members, in the Seanad, and in the context of wherever I can and we can say that for those who get access to schemes, the schemes are inadequate and not fit for purpose. Then we have the incredible cohort who do not get access to schemes at all. We have those two divisions. I am mindful that earlier this year, the disability advisory committee resigned en massein protests against the fact that it was discriminatory and unfit for purpose. I wanted to mention that in the context of our debate.
My thinking is heavily influenced by two individuals. One, Maureen McGovern who came before this committee in the context to access to public life, politics and participation. She is a disability activist in Chapelizod and Ballyfermot and she described her experience of sexual violence on leaving the house, of being imprisoned in her house because of the lack of the access to funding, and the ability to get out and about and the infrastructure of our footpaths, let alone having everything else that should flow from that.
My second big influencer, who is in my ear all of the time, is Gráinne Leach. She was in an accident in her early 20s and lost her arm. It is now a number of decades since then and she has never qualified for any scheme even though she is now experiencing significant disability in the arm she has relied on because it has been overused for years. This shows how inadequate the scheme is for the person who is fully qualified for it, and for those outside the remit of the scheme, they suffer dreadfully as a consequence. Underneath all of this, it is a horribly cruel irony that the exclusion of people and ending of schemes was as a result of a decision under the Equal Status Act. The irony of that is not lost on me.
Looking at where we are now, we have a transport group. I am disturbed to hear that witnesses have not had access to that yet. It is crucial and important that we make sure there is engagement with them and that we hear from them. As a committee, we can write and ask for that. What do the witnesses want us to do? Our committee is about articulating that. As individual party members, we are advocates within our own parties. What three things do witnesses want here and now? As we are coming up to budget time, what would they ask us to do immediately, if they had a wish list?
Ms Catherine Cox:
That is not an easy question. I refer to the report by the former Ombudsman, Peter Tyndall, called Grounded. Everything he said in that report made perfect sense. For us as a quick fix, I do not know but we need to see an allowance brought back, whatever it may look like. How it could take nine years is beyond me. We need to see that and that needs to be a payment. The Government did it in the past with home care, where cash vouchers were available and people could buy in care, whatever it looked like. The responsibility was placed on the family but at least they had a choice. For us, that choice is what is most important, as well as a system that is simple, flexible and meets those needs.
On the budget, we obviously represent family carers and we want to see the means test for the carer's allowance, for example, abolished. We want to see carer's paid for the work they do. We want it to be a fair payment and not €224 per week. The artists were mentioned earlier. The artist grant is a non-means tested payment of €325 per week, whereas the carer's allowance is €224 per week. How is that fair? If carers had a fair payment for the work they do, that would go some way towards paying for the additional costs of transport, along with everything else. Budget-wise, we would like to see the carer's allowance increased, the means test completely abolished over the coming years, and a flexible allowance for people in order that they can pay for whatever transport they require.
Mr. Damien Douglas:
Speaking more about families and carers of those with intellectual and physical disabilities, an awful lot of them have not had full participation in anything because of their disabilities. We are looking at the needs of the carers who have to provide, as advocates, for the people they care for and the needs of those who are intellectually or physically disabled. For some people, such as my girls, their disabilities are obvious. If anyone looks at them would say, "God, the poor things. It is shocking." There are an awful lot of families whose children and young adults have massive disabilities and just because they look normal, their needs are not perceived as being as severe as they are, or their behaviours are not seen as bad or disruptive as they are. All of those behaviours affect the normal things we all do, such as hopping into the car for a Sunday afternoon drive, going to McDonald's for a takeaway, or going to the Phoenix Park. We cannot do that just on a whim. So much needs to be done. We cannot even hop on the bus to do that because so many other things have to be taken into account. It is around that whole mobility issue and the needs. Many of our children and young adults cannot be put on a double-decker bus because, in many ways, their behaviour is so disruptive to other passengers or their own needs are such that it does not allow them to interact with people in that way. The choices we have are very limited. That is why it is so important to have a means of transport that suits the family needs.
As I said earlier, only a third of family carers get carer's allowance, and the maximum one will get is €224. Most family carers will not even get that. That is not both parents. It is only one carer in the family. Carers may be allowed to work up to 18 and a half hours per week, which is taken as means, so there is not even the luxury of both carers perhaps working full-time jobs and then having the money to buy the €50,000 vehicle or the vehicle for the sister or whatever else. People have to club in together or they rely on charity or community groups to help fund them with that. Of itself, it is great that people are willing to help, but it does nothing for one's pride or dignity. One knows one is the object of charity.
One is already in a situation whereby one has enough things - I will not call them crosses as that is not the word - to make one's day difficult and long. Before I came here this morning, we were up at 7 a.m. trying to get the two girls ready to go out. Mary was going to bring them because I was coming here. There is an awful lot of stuff to be done before one does anything else. I do not give out about any of that as that is part of our normality, but what would make our normality easier to bear would be not having to worry about whether I can afford to change the van when it is next due. I pay a huge amount for insurance because of the type of van it is. Where does that come from? That is where the grant one would get every month could be very useful, to be able to put that towards the annual insurance.
Deputy Ellis asked about the NCT. Thankfully, I have only once kept one of the vans more than four years and we had the NCT, but there is no help towards that. There is no help towards the running cost of the vans. There is in England, but not here. People cover all those costs themselves, which is fine. That is why most people, if they can, will try to change them every two or three years to minimise those types of servicing costs. If one gets a hand-up initially, as the €5,000 grant usually gives, it was easier to do that once one got started, but for those families now who are starting off and apply and if they are lucky enough to qualify, they have to bear all those costs themselves. The sum of €16,000 is the VRT grant one will get and, as far as I am aware, that is all one gets back. The adaptations to my vehicle will cost over €5,500, with a new floor and changing the lift every time. That is not covered because the VRT, as far as I understand it, has taken up the maximum availability of assistance on that.
They are hidden costs. I am not giving out. I am just saying it is part of the lived experience of many family carers that these are extra burdens they have to carry at a time when they are financially constrained by means tests and everything else.
I have to say, and perhaps this is borne from my experience with the committee on surrogacy, that Mr. Douglas does not have to explain. It is okay to call out the things whereby the lived intentionality of his life is something he has to combat. It is reasonable to claim the support of the State without having to apologise for giving out. He is entitled to do it, and it has nothing to do with his love for and promotion of his children and everything that goes with that. It is very important that he does not apologise for it. He has a right to say that the State should do better.
Mr. Kenneth Fox:
On some of the technical matters, there has been quite a hike in VRT. While VRT is covered to a limit of €16,000, the hike in VRT on certain vehicles, particularly the larger vehicles we are talking about, is eating into the €16,000. The NOx tax is refundable but again it eats into the €16,000. With regard to the €5,500 adaptation grant, people may not realise that in a new vehicle there is VRT on that €5,500 adaptation cost and there is VAT on the €5,500 adaptations. If they are created in the vehicle before it is registered and if the vehicle draws a VRT rate of 35%, there will be 35% on the €5,500 worth of adaptations and there will be 21% VAT on that as well. If one has a highly adapted vehicle where the vehicle cost might be €30,000 and there might be €30,000 worth of adaptations, the State is taxing the adaptations as well. In some cases, it might be giving €16,000 of relief but it has charged quite an amount of tax on the adaptations themselves, not to mind the vehicle. There are some structural things there, it is all tax law and is quite complicated, but there are things there that do not seem to be right.
Ms Cox quoted the example of somebody with the amputation of an arm. The cost of the probable adaptations to drive as a driver is probably approximately €2,500. Some of the reluctance is with this business of the primary medical certificate being so different from the actual scheme itself. If somebody qualifies with the primary medical certificate, the person can go in as a passenger or as a driver. There is a certain reluctance there for people who would be perceived as not having a need for adaptation as a passenger getting the primary medical certificate while they have very real and expensive needs if they wish to become independent drivers. What we probably would want people to do is to be supported to get out and about and to go to education and to work independently, not to be driven or to need somebody to drive them but to drive themselves as all of us aspire to do and to make their own way and do their own thing. That person might have got the motorised transport grant. It was possible to get the motorised transport grant if one met the means requirements. However, at present, one cannot get on it, yet the adaptation cost is approximately €2,500, which is a lot more expensive than certain other adaptations that are allowable.
In terms of what we might perceive, it is that there is some connection within the scheme, if it is about adaptation, with the adaptations required. We spoke about the environment and the environment in buses for certain categories of people. One of the things that came up in the Supreme Court is that the person had a permanent disability and an adaptation was required. It was not necessarily related but the vehicle had to be adapted because the environment of the vehicle had to be changed for the person to travel in it. That is where the Supreme Court had the problem. The person met the requirement, needed an adaptation and had a permanent disability yet could not get the primary medical certificate.
It is some correlation of the need and a better correlation within the scheme. It might need some change but we do not want to be in a situation where we lose it altogether. Coming behind that is a mobility allowance scheme reinstated and we develop that. If in time we develop a mobility allowance type of scheme and it supersedes or is better than the tax relief scheme, that is fair enough. If we need to make changes to the scheme let us make them and bring in a comprehensive mobility scheme behind it that may replace it in the future. There are changes in tax effected all the time. The tax relief scheme is a tax relief scheme so if we change our taxes, it immediately impacts. If we double the amount of VRT on petrol vehicles, it affects the scheme. If there is no advantage between me buying an electric car and Mr. Carty buying an electric car, it disrupts that market advantage for electric vehicles and it makes electric vehicles unattractive. What is going to happen in 2030 when the intention is that electric vehicles are what is around and one is going to be heavily penalised for owning a petrol or diesel car? Where does the disabled driver who is in the scheme go there? It is only seven years until 2030. If that is the direction of Government policy, what are we doing in terms of preparing for that on the disability side?
There are a few issues there, but I am very much of the opinion that the scheme should be adjusted and then the comprehensive scheme should come in behind it.
As I said, there is fear that we will find too many problems with the scheme, the scheme will collapse and, effectively, we will be waiting another nine years for this replacement scheme to come in.
Mr. Pat Carty:
Just to add that, I know Ms Cox said we should not have to apologise. With 30-odd years in wheelchair and having a disability, I do not have to. I have to thank the State, because I benefited from the old regime, where there was the motorised transport grant and all that. I did not avail of it, but it was there. It is now 30-odd years later and I am in full-time employment. There is no rebate for tax or anything. I pay for everything the same as everyone else in the Seanad and Dáil today. Sometimes, I am not a great advocate for people with disabilities. However, someone asked, “Are you not out there daily, leading your life?” When I look at it like that, I think that I am very lucky. As I said, I am involved with the GAA wheelchair hurling. I see other lads there who, with the way it is at present, will never be able to afford a car to get a job, to keep going, to pay taxes and to be self-sufficient. I have to thank the system that was there was there in my time. As I said, I am fully self-sufficient and lucky. However, for the people coming behind, we have to do something.
I was an able-bodied person but now I am disabled, so I see it from both sides. No disabled person I have ever met has said, “The Government of the day should look after me.” As disabled people, we do not want to be haggling and crying the whole time. All the procedures should be in place so that the young people coming up can have independent lives and contribute to society.
It is important to note that the onus is on us, as a Government and a State, to ensure that everybody has access so that they can live their best life and to ensure we overcome the impediments to allow that access. That is our mission. Certainly, as a Fine Gael Senator and spokesperson on disability, that is my mission.
I welcome the four witnesses. I know Mr. Fox well. Mr. Carty encapsulated everything that is positive in his last contribution. It is important to say that we need to get people to where Mr. Carty is, where he is living independently. What has happened in the past is that there were schemes that unfortunately fell away. We now have, as Ombudsman and Information Commissioner, Peter Tyndall, said, people who are grounded and cannot get going because there is no way of helping them to get to the place where they can become independent, get a job and get themselves into a position where the can become contributors to society like everybody else. That is our goal.
I would say to Mr. Douglas, in regard to the lived experience, that he has given us a true picture of what life is like. He is not complaining about it. It is a question of politicians and legislators, especially those on this committee, taking on board the fact that we had schemes such as the motorised transport scheme and the mobility allowance and they were taken away. People have been disenfranchised in their efforts towards independent living.
I have seen children, who perhaps have behavioural issues as a result of disabilities, whose parents' car needs to be adapted for their safety. That is something that the primary medical certificate does not facilitate. I have a situation where a child is blind and the car needs to be adapted to suit the transport needs of that child. Again, there is no support right now for that. That is were we are getting to.
As Mr. Fox said, we can overcomplicate things and end up in a situation where things become unworkable. I am worried about the journey the primary medical certificate is on at the moment.
A number of people have contacted me, including today. I got an email from a parent who was refused a medical certificate but needs assistance with transport. I am from a rural area where we do not have public transport and this, that and the other. We do not have taxis. Mr. Douglas alluded to the situation in the cities, in terms of Lucan, trying to get transport, to get transport for two wheelchairs and to enable people to travel together. There is a huge problem that has been left in abeyance for the past nine or ten years. As a Deputy on this committee, my message is that it is focused on trying to get things moving. I have to go to another committee meeting, but I would like to ask if Mr. Fox's group or organisation is involved in the working group which has been set up.
It is important we ensure we make representations on behalf of family carers to make sure they are also included in that working group. I will not ask any more questions. I have been listening all morning and I would say to the witnesses that we will do anything we can as a committee. We will probably summarise what they told us and prepare something for the Minster as well to try to help ensure that a workable and adaptable scheme is put in place.
It also comes down to individualisation. I was talking to Gabe Cronnelly the other day. He is a county councillor in Athenry and is an amputee. He explained that a friend of his is also an amputee. Gabe lost his right foot and his friend lost his left foot. The adaptations they need to their vehicles are completely different, even though both of them are amputees. Individualisation of support is needed for people because everybody cannot be shoehorned into the one grant or whatever. There are variances in that. That is why we need to have a support scheme that is worthwhile and can be adaptable in terms tax changes in budgets or whatever and for people’s needs rather than force something on people. That is the key to a good scheme. I think I heard from Mr. Fox that we have something in the interim until we get something that will work correctly and properly in the long term. Is that what he said?
Mr. Kenneth Fox:
We have all repeated that the only show in town is the tax relief scheme and we all have this fear. Obviously, there have been issues with it and there are difficulties with access. However, for the 15,000 people, it is the only show in town. Everybody is afraid that because of all of this pressure that it is under, it will suddenly fall over and there will then be no scheme and nothing coming to replace it. Everyone wants improvements or some adjustments to be made to the scheme, probably separately, because even if this comprehensive schemes comes later, being realistic, that will not happen in a day or two or whatever. Perhaps, in time, it will get replaced. However, we may have to make some adjustments to the scheme to improve it because it may not be perfect. Keeping that running is the important thing while building a comprehensive system behind it is the way to go. There is a big fear out there that this will all get to be too much and we will end up in the same situation as the mobility allowance and the motorised transport grant where it is dropped. That is a huge fear out there.
The other thing is there are 20,000 people. If one looks at the number of people who are getting permits and whatever, that pro ratafigure from the UK is 150,000.
I thank the witnesses for their presentations. On this committee, we are aware of the importance of accessible transport, both public and private. The motorised transport grant was for the purpose of retaining employment but we have come to realise that transport is necessary for more than employment. It also gives access to education, shopping and socialising so that people can live independent lives. The biggest issue is in rural areas. I live in a rural area and if I did not have personalised transport I would not get to many places. There is a Local Link service in the county but it is quite sporadic. Some areas are well serviced and others are not. I have heard of the Local Link service not accepting the free travel passes of many disabled people attending day services. I am trying to get clarification on that. That should not be happening.
The witnesses talked about the fact that the motorised transport grant and the mobility allowance were suspended nine years ago with the promise of a new scheme. They actually gave the new scheme a name and that seems to be all they have done.
Mr. Douglas mentioned the Motability scheme in Britain. I had some discussions with people about that scheme, especially in the North where people can avail of it and have done so for decades. People find it a good scheme where a car can be leased for a certain number of years. The insurance and upkeep of the car are covered. Are witnesses familiar with the scheme? Do they think it is a good scheme? Is it something the transport group here should consider? Are there other schemes in other jurisdictions that should also be considered? Would it work?
Mr. Fox said he was at the initial meeting of this transport group. I have heard from other groups that were at the initial meeting. That concerns me because that initial meeting was in January and I do not know what kind of work has happened since then. I hope there is a good deal of work going on behind the scenes. There needs to be consultation with groups such as Family Carers Ireland, the DDAI and others. Members of the Disabled Drivers Medical Board of Appeal appeared before the Joint Committee on Finance, Public Expenditure and Reform, and Taoiseach a couple of months ago. They were engaged with once or twice on the transport scheme and that was it. They were asked for their submission, but not much happened after that.
I am also concerned about the appeal board because it resigned at the end of last year. Many people who applied for primary medical certificates have been turned down, have appealed the decision and are waiting. They are asking me how long must they wait. There is no board of appeal. I have submitted parliamentary questions asking what is happening there. The Department of Health advertised and looked for new people to go onto that. There are no applicants. People who were on it are not surprised because the criteria were so stringent. They were promised a review by the Minister for Finance which has not happened. It is concerning. People are applying for that scheme because it is the only scheme. Most of them will not qualify because the criteria are so stringent. We need a completely new scheme that covers all levels of need. I can understand the witnesses’ concern that if a new scheme was found to be too complicated, it would be suspended like the others. That is something we do not want to see.
The consultation is important. I know of disabled people who were consulted with by the National Transport Authority, Dublin Bus and so on regarding accessibility. They have engaged only to have their suggestions and submissions ignored. We do not want consultation just for the sake of a box-ticking exercise. It needs to be meaningful and those suggestions that come from disabled people need to be taken on board. Again, I thank the witnesses for their presentations here this morning.
Mr. Damien Douglas:
I am only familiar with the scheme in Britain through families like ourselves who are in the same situation. We are part of a support group of families with children who have the same conditions that my girls have. The Motability scheme in Britain is very useful for many families at a nominal cost of a few hundred pounds. It might have increased to a thousand or two. They can change their vehicles every three years. It is a vehicle of their choice rather than one imposed on them. It is a vehicle that meets their needs rather than somebody else saying what they want. The amount they pay is minimal. As far as I know, the scheme covers insurance and tax. Any repairs that are needed are covered as well. Something like that would be very advantageous here. As far as I know the families do not actually own the cars but at the end of the three years they can hand them back and qualify for new one. They pay money again but it is a minimal amount. In Ireland, by contrast, you buy the vehicle. As far as I know, you cannot lease it. You have to purchase the vehicle, as passengers. You cover the cost of it. The VRT is refunded. As part of the scheme, the tax is covered for the vehicle, which is much appreciated. However, you cover your own insurance and all other costs such as repairs. They are huge amounts. In our own case, it is very hard to get insurance for a vehicle like ours. As far as I know, AXA is the only company that will cover it. I have tried numerous other companies to see if I can get a cheaper quote but it is not available. As we cannot afford to have any difficulties with the vehicle, we have to maintain it according to garage specifications. The kind of mechanical input that has to be made into new vehicles afterwards is very limited. Sometimes you are lucky and only have the regular yearly service. Other times you are banjaxed, something goes wrong and you are gone. I had a problem recently with a hoist. I had to change the hoist and the new hoist let me down with the girls stuck in the van. I could not get them out. That was an emergency for us. We had to manage the cost of the hoist ourselves, as we do with the maintenance, repairs and servicing. A scheme like the Motability scheme in England could be very useful to look at here.
I do not think any carer or anybody expects to get something for nothing. We do not. We are happy to pay reasonable amounts of money. I ask the committee to bear in mind that we are coming at it from a different point of view. We are already, pardon the pun, disabled in the sense of the people we look after. We are disabled in the sense of the money we are allowed to earn before we lose any abilities. It is all capped. There is a limited amount of money available to us for what are termed "luxuries". They are not luxuries; they are essential to have any kind of limited freedom as a family. We are always looking over our shoulder and in our pockets to see if we have this or can plan for the cost of that. If not, we must consider how we are going to manage. The last thing any of us want to do is depend on charity or on the kindness of strangers. We should not have to do that. We are lucky that people are so generous. We are lucky too that the State in a sense is generous in what it gives us, but in all honesty it is not really enough for our current needs. The needs of those who do not qualify on a technicality are as great, if not greater. I refer to the families of those with intellectual disabilities, in particular, who cannot be drivers themselves. Their need for transport is just as great if they are to have an ordinary day’s activity. They will not go to work, but they need to go to school, attend day services and attend medical appointments, etc. You want to give families a degree of autonomy to give them that freedom. In ten years’ time I will probably be too old to drive - I will be 75 - but my girls’ needs will not have changed. The services we can provide ourselves may be very different. I am afraid to think of what that might be like. As I have said, you cannot get on the 25A with two wheelchairs. Many day services do not provide transport. It is left to your own means. Something that addresses such issues is needed.
Senator Seery Kearney asked what the committee can offer. I suggest it should listen to families about their needs, and not about what somebody in an office in town understands those needs to be. If it listens to the families, it will hear about the different needs in different parts of the country, depending on what supports are available in various places. We talk about the postcode lottery in relation to service provision, and likewise in relation to transport. Nobody is looking for anything exorbitant. We are just looking for the same opportunities that other people have.
Ms Catherine Cox:
I will add to what Mr. Douglas has said. In the case of carer’s allowance, in the last budget the income disregard for savings was raised from €20,000 to €50,000, but we are still capping carers who are putting money aside for things they will need for the future care of their loved ones. Mr. Douglas's van was €50,000.
That would be a person's savings gone in one go. We need to look at the broader picture for people, including the person with the disability and his or her wider family. We must stop penalising people and start supporting them, not just financially but also through the provision of adequate supports. Quite often, the financial strains are there because the other supports, such as respite, day services and transport to and from services, are not in place. From our perspective, we need to look at family carers and how they are supported to care safely for their loved ones in their own home. That includes the right to transport for the person with the disability and the right for carers to have their independence and live their lives.
Mr. Kenneth Fox:
I will comment further on mobility. As I said, approximately 2 million people in the UK get a mobility payment. Approximately one third of them convert that mobility payment into a lease payment. They are allowed to use the money to lease a vehicle through the motability scheme. That scheme probably represents the largest leasing company in Europe. We recently had a meeting with the people who run it. They lease 800 cars a day. It is a very large scheme. The UK Government allows the people who run the scheme to buy the cars VAT exempt, and they have huge negotiating power with the vehicle manufacturers, insurance companies and car maintenance companies. They lease the cars, fully insured and fully maintained, for a three-year period, after which the vehicles are taken back and put on the resale market.
Some 10% of the 700,000-plus cars used in the scheme are highly adapted, which means that many of the cars go back into the general market. Committee members may not realise that we depend to a huge extent on that supply of vehicles. A large number of the cars we see coming through the various suppliers are vehicles coming off the motability scheme in the UK that have finished lease, finished lease early or were handed back for various reasons. They go onto the general sale market and end up here. Many of the not-new vehicles with lowered floors, wheelchair accessibility and various adaptations that are on the market here are second-hand or out-of-lease cars coming from the UK. They are a big factor in our supply because we do not have the infrastructure to build those cars in a mass way here. We just do not have the population. We are depending on that supply.
Brexit has not been great for us in terms of access to this source of low-cost supply. Previously, that access meant people did not have to go for new vehicles and could, instead, get a fairly good vehicle at a reduced cost from the UK. It is a big factor for us in terms of supply. As I outlined, the payment can be converted and may be supplemented if more is needed to purchase a vehicle. There is also an equalisation process under the scheme whereby the people with a lower adaptation need contribute in a way that equalises the contribution required from those with a higher adaptation need. Everybody pays the same amount as a result of that equalisation factor. There are big numbers involved in the scheme and the people running it are allowed to do that. The possibility of an arrangement being reached with them is probably more difficult in the current political circumstances, but that is how it works.
I thank the witnesses for joining us this morning. This is an issue that often lands on our desks. We get many queries and representations from people in regard to primary medical certificates and the disabled drivers and disabled passengers scheme. I do not have many specific questions. I thank the witnesses for educating us, particularly in respect of the UK scheme. It seems to be based on common sense. Every week, we come in here and learn a little more, which I very much appreciate.
We have noticed a few themes with all the contributions. Many people are excluded from current schemes. If they do have access to them, the schemes are not fit for purpose. There is no flexibility within any of the schemes and their implementation, for the small percentage of people who make up the cohort that can access them, there is a double taxation on the adaptation work. It is, in a way, a case of robbing Peter to pay Paul, and penalising people in that way. Participants must continuously work to improve their situation when, in many cases, sadly, people's situations do not improve but, in fact, deteriorate. When I got a car in my early 20s, my independence was greatly improved and, all of a sudden, I was able to live a life away from the curtailments of my family. What right do I have above someone else to be able to do that? The fact people do not have access to that independence, flexibility and choice is embarrassing for me. I am no greater than anyone else and I should not have more access to something just because of my circumstances. I find that infuriating.
Ms Cox spoke about the uncertainty for family carers. A woman came to me recently who had taken on extra hours in order to upgrade the family car and be able to care for and transport her mother a little more easily and comfortably. Then her carer's allowance was cut. She was penalised for the few hours she had taken on in order to survive and improve the circumstances for her family and the person for whom she is caring. It is heartbreaking to see that and have to say I am unable to help because of the rigidity, inflexibility and uncertainty in the scheme. One does not know what one will get. How dare people try to improve their situation by getting a pay increase or working a few extra hours. People are being penalised, to the detriment of their family, for trying to help themselves. It is nonsensical to me.
We have a lot of actions to implement. We launched our pre-budget submission yesterday and transport is one of the key areas. It continues to be one of the key issues we work on in our constituencies and in this committee. I thank the witnesses for educating us this morning on some of the practicalities of their own situations and the practicalities of situations and schemes in the UK. We are waiting long enough for improvements and serious action is needed now. Go raibh maith agaibh.
Mr. Damien Douglas:
Deputy Ellis mentioned earlier that the HSE has said there is no money for transport services, which is true. The analogy for that is saying to somebody that he or she will be given a new house or new kitchen but no oven in which to cook food. People are being told they will be given some of what they need but not all of it. That is exactly where a lot of people are. They are given something that helps but, in a lot of cases, not enough to make a huge difference in terms of the independence they need. For those who can do it themselves, it is great. For those who cannot do it and are dependent on others to do it for them, it is a double burden.
The challenge is to equalise that a bit.
I apologise for not being here earlier. I needed to be in the Dáil for two oral questions to the Minister for Children, Equality, Disability, Integration and Youth. I thank the witnesses for being here today and for helping us to understand multiple issues related to transport systems. We all know that accessible and inclusive transport is a really important enabler for participation in normal life events. It is necessary for work, socialising, independence, education and many other things. However, the impact of poor and inaccessible transport is somehow not fully appreciated by the State as a major barrier for disabled people and their families. One of the witnesses also mentioned the additional transport and related costs faced by disabled people and their households, from major investment in vehicles to expensive additional journeys and having to use taxis.
Yesterday the Dáil passed a Social Democrats motion seeking an action plan on the cost of disability. That report outlines the extra transport costs faced by disabled people. The additional cost of having a disability in Ireland is up to €12,000 annually. We can only hope that the Government acts on that and listens to the witnesses' points on things like the motorised transport grant, mobility allowance and the disabled drivers and disabled passengers scheme.
The discontinuation of the mobility allowance and motorised transport grant to new applicants in 2013 was disgraceful in itself. That no adequate replacement has been developed nearly eight years later is truly shocking and really difficult for people to get their heads around. I do not believe the vast majority of the public knows that. The situation is another clear violation of individual rights under the UNCRPD, both the right to equal access to transport in Article 9 and independent living in Article 19. We all agree on the need for public transport. As a Deputy representing a rural constituency, I am very aware of private transport being a vital resource for disabled people and the need for targeted supports in that regard.
In her opening statement, Ms Cox said that a one-size-fits-all model for mobility support does not work for disabled people. There is a complexity of interacting issues and conditions that can affect an individual's mobility which can change over time, sometimes quickly. Departments and the Revenue Commissioners have insisted on a very medicalised model which focuses on impairments rather than individual capacities. I ask her to elaborate on how the system should work for mobility support. The committee would like to be able to make specific recommendations.
Mr. Fox highlighted how little has changed since the 1960s concerning accessing the tax relief scheme. I again ask for specifics on what application process and criteria would be more suitable. If I have time, I may ask more questions later.
Mr. Kenneth Fox:
There have also been discussions with some other groups on this. The Deputy is correct in saying the model is very medicalised. It is an approximation with people required to pick a few categories and that is roughly what should cover anyone who needs it. Rather than it being a medical model, we need something similar to an occupational therapist's assessment even if that is within the State system. There should be an assessment of somebody's needs taking a more global view and then the benefits based on a recommendation within certain categories should flow from that. It should be based on a broader spectrum of considerations rather than strict narrow criteria. There should be an assessment followed by a recommendation for a particular level or something of that nature where the individual's needs are being considered.
At the moment we are using senior area medical officers. Part of the issue is that they have other responsibilities. Especially during the Covid pandemic they had many other responsibilities. The system is under pressure anyway. We need to find a better model similar to an occupational therapist-type view of a person's mobility needs and where adapted transport fits in with that model if that is what the scheme is about.
Mr. Pat Carty:
As Mr. Fox said, it will not be tailor-made for everyone. We need to identify a budget. It is more of an occupational therapist-type situation. We would need people on the board who could identify the areas and all that. As a person with a disability, I know it will not be tailor-made. It will be a bit like a points system. It will be graded in some way. The main thing is to keep it simplified. If it is too tailor-made, we will be back to the 1960s and we will have nothing. There are many capable people there. When their heads are put together the answers will come. Not enough pressure has been applied to get it to happen by a deadline. I think Mr. Fox has said enough about the areas we should look at.
Ms Catherine Cox:
The Deputy asked what could be done with the mobility allowance. The mobility allowance worked and it was only removed because of the Equal Status Act. Rather than extending it beyond the age of 66, it was removed. It should be reinstated and opened up. That system worked. It was an allowance and provided flexibility. We believe it should be opened up rather than removing it which is what was done. I know the fear with the other system is that rather than making it better it will be completely taken away. Obviously, none of us wants to see that.
Mr. Damien Douglas:
The old system had its uses in some ways in that there was a need for a primary medical cert for certain situations and it probably worked. It obviously came about in a time when people with significant intellectual disabilities were put away in institutions and brought out in buses. The whole scenario has now changed with most people living at home, but they are prisoners in their homes because they do not have the means to give them the freedom to get out and about. The individualisation that is talked about is denied to them and their carers because they do not have the means for appropriate and adequate transport and a vehicle that meets their needs rather than what somebody else thinks they should have. We need a system that looks at the reality of people now.
Can someone elaborate specifically on the challenges for disabled people in rural areas? It would be valuable for the committee to hear that. The cost of disability report gave an overview of the additional mobility and transport expenses for people with disabilities. Would anyone like to share their lived experience because sometimes that is what people relate to most and sometimes spurs change even though we should not need to draw on those experiences?
Mr. Pat Carty:
To go to a wedding or any function two or three times a year, it is possible to organise and have everything in place. If there are a few people, a wheelchair and other things to bring along, it is not practical to do that much organising every time. The disabled drivers tax scheme was great for me. I am independent. I can go in the car on my own. However, families need an adapted vehicle.
It is all right for just one or two days per year. Considerable organisation is needed, however, in rural and urban settings. It is just not possible to go here and there every time. In a family situation, one may have to bring children to school in the morning and bring other dependent children somewhere else. They may not all fit in the vehicle together.
To be fair, people do not realise, as Mr. Douglas said, the level of organisation and planning that has to go into a day trip. However, if we have our own vehicles and independence by whatever means we get them, such as the mobility grant, we can do the organising ourselves. We are capable of doing the organising in many cases. There is no need for people to plan for us. We can do it, if we get the simple tools to get on the ladder and have the supports to do so.
Mr. Damien Douglas:
Sometimes it is very easy. There is a normality in our house that nobody else has. We have had to normalise things to work for us, such as the use of hoists. Our girls are in nappies and we have considerable extra costs. Thankfully, the HSE supplies those, but it does not pay the bin charges for all of those nappies. I am not giving out, but it would help to have them paid for. As part of the carer's grant, we get the homemaker's grant. We get €35 per month towards bills, which, again, is great, but we have to have electricity on the whole time. Our girls are on pumps and hoists and use electric showers. Some €35 per month is certainly a great help towards it, but I got an electricity bill for €312 the other day. That is the kind of bill I get every time. That is normal for us, because that is the amount of electricity involved.
I had to bring the girls into St. James's Hospital yesterday to get blood tests. I could find not a wheelchair parking space anywhere. I drove around the hospital two or three times. There are considerable difficulties such as that. The van is slightly larger than a car space and one needs space at the end for the tail lift and hoist to come out. I eventually got a space. Planning takes much longer. One has to give oneself much more time to get to places because there are many other difficulties and one has no certainty. I have no faith that the new children's hospital will be any better equipped for families in a similar situation that will have to use it.
In many ways, the State is extremely helpful to people with disabilities through the medical card scheme. The scheme covers the costs of many things, but there are many other things that are not costed. We do not have any carers coming into the house. Anything that has to be done, we are doing. It has never been offered to us. We have never looked for it. We can manage. However, I know if I have to look for it, I probably will not get it, because we have managed all of these years, unless I break a leg or Mary dies or has a stroke. It would then be extreme and we would probably get an hour in the morning and half an hour in the evening, which would be no good because the needs are very different from that.
Many carers are doing many things behind closed doors that even people on their street know nothing about. People are proud. It is nobody else's business, and, yet, they suffer because of that. Sometimes we suffer because what we can do is so limited in the absence of some kind of support. It is great in a way that the support is there but, in all honesty, the level of support is minimum. It is a chore in that it is very difficult one wants or needs to change one's van. Nowadays, one cannot even get a van because of the shortage in supply. I have been on a list since last November. I am told that a van probably will still not be available by this November. That is the reality. It is not as though one can pick out any vehicle. Our needs are very specific and we need a very specific type of vehicle. Those vehicles are just not there. We are lucky enough in that we are patient - for a bit longer anyway. Not everyone can be patient, particularly as their needs are such that they are on the edge nearly all of the time.
Carers are on the edge twice. They are on the edge for themselves, as carers and families, and on the edge for the people they are looking after. The people the carers are looking after because they cannot do anything for themselves. They cannot make decisions. No matter what the capacity legislation says, they have no capacity to do so. Carers are on the go twice and their energy is going into that the whole time. There is no excess energy for much other stuff. We had to make considerable arrangements at home to come to speak to the committee today. I am very thankful to my wife for doing that, because the message I have to give may not have been heard other than that. I appreciate the opportunity.
It is very important that we get the lived experience every Thursday morning and reflect on it. I know the members take very seriously our obligation as members of the committee. There has been a number of issues in this morning's evidence, among which there is a proper mobility. I know that Mr. Carty alluded to there being intricacies and challenges in having it be universal and making it as accessible as possible to everybody, but we need to have a new system. The carer's allowance should be care assessed rather than means assessed. We have to push very strongly for that.
The level of work, patience, dedication and commitment by family members who have people with disabilities constantly amazes me. We have to and intend to keep highlighting the shortfall from the State's point of view. An issue was raised in terms of the purchase versus the lease of vehicles. We tried that through the Revenue Commissioners, through the scheme. The lease went down, rather than the purchase. Somebody had leased the vehicle because he or she would not have been able to purchase it. That needs to be rectified, because it is a glaring anomaly in the system. It is also totally and absolutely unacceptable that the appeals board is not up and running and functioning at this stage.
I thank the witnesses for their evidence and honesty and their being up front. It greatly enhances our work as a committee. We will continue to reflect on it. I thank our members sincerely for their work and for being with us this morning. I also thank our background team, which keeps us going and does all of the heavy lifting and work.