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Joint Committee on Finance, Public Expenditure and Reform, and Taoiseach debate -
Wednesday, 11 May 2022

Disabled Drivers and Passengers Scheme: Former Members of the Disabled Drivers Medical Board of Appeal

Apologies have been received from the Chairman, Deputy McGuinness, and Senator Sherlock. Deputy Tully is substituting for Deputy Farrell and Deputy Matthews also sends his apologies.

No. 6 on today's agenda is the minutes of the joint committee's meeting of 4 May 2022. They were agreed at the earlier meeting. No. 7 on the agenda is an engagement with former members of the Disabled Drivers Medical Board of Appeal. I welcome members and viewers who may be watching the proceedings on Oireachtas TV to the public session of the Oireachtas Joint Committee on Finance, Public Expenditure, Reform, and Taoiseach. The purpose of today's meeting is to discuss the disabled drivers and passengers scheme with the former chair and a former member of the Disabled Drivers Medical Board of Appeal. They are Dr. Cara McDonagh, former chair of the board, and Dr. Nicky Scaramuzzi, a former member of board. Dr. McDonagh will make some brief opening remarks, which will be followed by a question and answer session from members.

I draw attention to privilege because we cannot malign or draw attention to anybody outside the House who cannot answer for himself or herself. Using the privilege of the Houses to make remarks about somebody else is not allowed and we cannot do that. I am not suggesting for a minute the witnesses would do it. It happens from time to time, much to the chagrin of the committee. We must deal with it as it comes up.

Members are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person outside the Houses or an official either by name or in such a way as to make him, her or it identifiable. We must take that with a grain of salt too with some of what we see from time to time, including recently. However, I remind members attending remotely that the constitutional requirement is the members must be physically present within the confines of the place where Parliament sits, namely, Leinster House.

I invite Dr. McDonagh to make her opening remarks.

Dr. Cara McDonagh

The disabled drivers scheme began in 1968 as a tax relief for drivers who suffered from a permanent disability, mainly affecting those with traumatic spinal cord injury and lower limb amputation who were largely dependent on a wheelchair for mobility. The scheme was extended in 1979 to include disabled passengers with severe disabilities, and this included babies and children who had severe permanent mobility disability and who fulfilled the strict medical criteria. In 1990, the Disabled Drivers Medical Board of Appeal, DDMBA, was established by the Department of Finance to review individuals whose application for the primary medical certificate, PMC, was unsuccessful at local HSE level.

Section 92 of the Finance Act of 1989 enabled the Minister for Finance to make regulations providing for repayment of excise, road tax and VAT in respect of vehicles used or driven by persons who are severely and permanently disabled. In 1994, the disabled drivers and disabled passengers regulations introduced the six medical criteria. The regulations state "the eligibility on medical grounds of disabled persons who are severely and permanently disabled shall be assessed by reference to any one or more of the following medical criteria". It is important for the committee members to hear these six medical criteria the DDMBA was obliged to use to assess persons appealing the decision not to grant the primary medical certificate. They were:

(a) persons who are wholly or almost wholly without the use of both legs;

(b) persons wholly without the use of one of their legs and almost wholly without the use of the other leg such that they are severely restricted as to the movement of their lower limbs;

(c) persons without both hands or without both arms;

(d) persons without one or both legs;

(e) persons wholly or almost wholly without the use of both hands or arms and wholly or almost wholly without the use of one leg;

(f) persons having the medical condition of dwarfism and who have serious difficulties of movement of the lower limbs.

It does not take a medical qualification to know that the language used in these criteria is bizarre and the criteria are very restrictive and exclude many people with genuine, severe and permanent disability from accessing supports. For example, the person with weakness on one side of the body from a stroke, traumatic brain injury or cerebral palsy may be excluded, as may the person with an amputated or absent upper limb, or a child with physical or neurological and development disorders who needs specialised seating. These are just some examples among the many people who have genuine disability and require an adapted vehicle but do not qualify under the medical criteria.

Persons wishing to avail of the disabled drivers and passengers scheme are first assessed at community level by community doctors. If deemed ineligible at this level they can appeal the decision to DDMBA. The board operates independently of the assessment process carried out by the local HSE community medical officers. The members of the Disabled Drivers Medical Board of Appeal are medical practitioners appointed by the Minister for Finance on the recommendation of the Minister for Health for a serving period of four years.

The adjudicating panel at all clinics comprised the chair and two ordinary board members. In the years between 2010 and 2019, only between 1% and 8% of persons were successful at appeal hearing with the Disabled Drivers Medical Board of Appeal.

I was appointed chairperson of the DDMBA in 2015 as part of my appointment as a consultant in rehabilitation medicine in the National Rehabilitation Hospital, NRH. Concerns about the restrictive and inequitable nature of the medical criteria were expressed by my predecessors. Within the first year of my appointment, at interactions with the Department of Finance I expressed my strongly held view that the scheme needed to be changed. In June 2018, the board formally wrote to the Department of Finance laying out our concerns about the inflexible and discriminatory nature of the criteria and the need for the scheme to be revised or updated. We did not receive a reply despite expressing our willingness to discuss the matter further. I continued to link with the officials in the Department of Finance on a regular basis and meetings were held in the National Rehabilitation Hospital and the Department of Finance at which I repeatedly outlined our concerns about the difficulty in fairly applying the criteria and the inequitable nature of the scheme. The DDMBA also had regular requests from the Office of the Ombudsman in relation to complaints made to it in respect of the decisions taken by the board.

In June 2020, the Supreme Court found against the Disabled Drivers Medical Board of Appeal and the Minister for Finance in an appeal brought by two persons who had not been granted a primary medical certificate at an appeal hearing. The court went on to quash the board’s decision and granted a declaration that in applying the criteria set out in regulation 3, in other words the medical criteria, to the appellants, the board failed to vindicate their rights under section 92 of the Act. As stated by the Minister for Finance, Deputy Paschal Donohoe, in an answer to a parliamentary question in July of 2021, "The judgement found that the medical criteria set out in the Regulations did not align with the regulation making mandate given in the primary legislation to further define criteria for ‘severely and permanently disabled’ persons."

All assessments for the primary medical certificate were suspended at community level and at the DDMBA following the Supreme Court ruling. I engaged regularly with the Department of Finance between June and November 2020 via telephone, email and video link. During this time, I repeatedly expressed my opinion that the Supreme Court decision further vindicated our concerns about the medical criteria and emphasised the importance of progressing rapidly with a comprehensive review of the scheme and complete revision. During this time, the Minister’s official responsible for the scheme had advised me that the Minister planned to have new legislation prepared in time for the Finance Bill 2021. It is my recollection that in September 2020, his official also spoke to me about a plan to insert the existing medical criteria into primary legislation. I expressed my view that I and the other board members would not be willing to continue to use the existing medical criteria after the Supreme Court ruling and that I felt this approach was a retrograde step. The Minister for Finance made the decision to make an amendment to the Finance Bill 2020 to allow for the existing medical criteria in primary legislation. The legislation was amended without any notification to the DDMBA and I only became aware of this change when allied health staff in the National Rehabilitation Hospital informed me in late 2020 that assessments for the primary medical certificate would resume in January 2021.

In December 2020, I wrote directly to the Minister for Finance on foot of this change to the legislation to express our concerns about the course of action taken by him. I also again expressed our concerns about the lack of any significant action on a new scheme for disabled drivers and passengers in the six months since the Supreme Court decision. To quote my letter, "the DDMBA have unanimously stated that they will not be able to assess appellants for the PMC using the same medical criteria whether in legislation or not given the recent Supreme court ruling and their long- held view that the scheme is inequitable". The Minister wrote back to me on 21 January 2021 and requested that we reconsider our decision to avoid "directly penalising applicants who otherwise may have their cases successfully appealed by the Medical Board". I wrote back to the Minister in March 2021 and advised that we would be willing to resume appeal hearings to clear the backlog from 2020, a period during which public health measures meant that appeal hearings were suspended. My letter stated:

[H]owever, continuing new hearings on the basis of the existing medical criteria after the backlog of current appeals is cleared is fundamentally a wrong way of continuing our work in equity and disability terms for disabled drivers and passengers. It is very important for the members of the DDMBA to see substantial progress being made towards a new scheme for disabled drivers in a timely manner...

I asked the Minister to meet with the DDMBA and, to quote my letter again, "to give us reassurance that our concerns are heard and that you fully understand the inadequacies of the current scheme and the urgency of devising a new scheme for disabled drivers".

Members of the DDMBA met the Minister and his officials on 29 March 2021 via video link. During that meeting, the Minister acknowledged the validity of our concerns about the scheme. He made a commitment to put time into a process that would yield a scheme that better met the needs of those with disability. He also talked about the need to deal with this issue in the Finance Bill in December 2021. He told us he had been in contact with the Minister for Children, Equality, Disability, Integration and Youth, Deputy Roderic O’Gorman, to see if his Department would co-chair a review with him in relation to these issues. He also said that if that Department was not going to participate or did not get back to him quickly, he would get this work under way within his Department. Overall, the Minister accepted that there were issues and recognised that the board was making decisions that were even more demanding than they should be. He accepted the validity of the points we made and said he was going to put time into getting the scheme to a better place during the year. Due to these reassurances, I told the Minister that the DDMBA would be willing to clear the backlog of appellants from 2020, but that we were very reluctant to see new appeals from January 2021 until we saw substantial progress on a new scheme. I had also indicated this to him in my letter of March 2021.

Appeal hearings with the DDMBA resumed in April 2021. In the ensuing months, we worked through the backlog of appellants from 2020 as agreed following our meeting with the Minister. Between July and September 2021, there were an unprecedented number of complaints made to the Ombudsman in relation to our decisions not to grant primary medical certificates. There was no demonstrable progress on a new scheme for disabled drivers and passengers during this time and I remained in contact with officials in the Department of Finance.

The scoping exercise talked of in the autumn of 2020 by Department officials had not yielded anything despite assurances that they would soon forward documents to me in November 2020. On 2 September 2021, more than five months after our meeting with the Minister, I wrote again to the Minister requesting an update on progress towards a new scheme for disabled drivers and passengers. On 9 September 2021, I spoke to a Department official responsible for the scheme and he admitted that there had been little or no progress. On 14 October 2021, having received no indication of any significant progress on a new scheme 16 months after the Supreme Court ruling, I wrote to the Minister giving notice of my intention to resign on 11 November 2021 when the last appeals clinic was scheduled to clear the cohort from 2020. As I stated in my resignation letter, as a medical professional who in my clinical role cares for people with disability and makes every effort to advocate on their behalf, I could no longer participate in a scheme that is unfair and denies assistance to people with genuine disability. I remained in post until 30 November to deal with any paperwork or issues resulting from the last clinics. Within 24 hours of my notice of resignation, two other board members had resigned and the remaining two board members tendered their resignations within weeks. On the day I gave notice of my resignation, and after the Department of Finance had received my resignation, I was sent a letter from the Minister in response to my letter of 2 September 2021 requesting an update. Unfortunately, this letter did not alter my decision to resign.

Since December 2021, I and two other members of DDMBA have participated in a subgroup to review the disabled drivers and passengers scheme set up by the Department of Finance. My understanding from Department officials is that it is agreed that our review will come under the national disability inclusion strategy, NDIS, working group tasked with reviewing all Government-funded transport supports for those with disability. I and other members of the DDMBA have repeatedly expressed our willingness to lend our experience and expertise to devising a new and fairer scheme.

I believe this statement demonstrates that the decision to resign from our positions on the DDMBA was a difficult one for board members and it did not happen without us making every effort to highlight the inadequacies of the scheme and to repeatedly advocate for comprehensive revision. We have always tried to engage constructively with the Department and the Minister to try to push for change. Unfortunately, on professional and ethical grounds, I felt my position as chairperson was untenable as I could no longer preside over a scheme that was inequitable and there seemed no urgency to even start the process of change.

I welcome both doctors. I want to get a greater understanding of the events that led to the entire board resigning. I am sure it was not something board members did lightly as professionals dealing with people with disabilities and the difficulties there and having indicated at an earlier stage that they could not continue to assess but took the commitments at their word. I also want to look to where we go forward and how the scheme needs to be fixed so we can provide the necessary supports and not force families into the situation they are in.

As a committee we have sought the correspondence on numerous occasions and the secretary to the committee has written to the Department of Finance and the Minister's office over a dozen times. We have raised this every week and sought all the correspondence in the Department on this but we have not got it. We made the point in private session that the Department stonewalling us on this issue is not acceptable. There was a verbal commitment that all correspondence would be given. Yesterday or in the last couple of hours we got some correspondence-----

It was today.

-----from the Department of Finance. It was an FOI I received two months ago and nothing else. Going back to the 2018 letter, I am struck by the absence of acknowledgement of or response to that letter because its content was quite serious. I invite the witnesses to talk about that. If I am correct in my memory, that letter talked about the safety of members of the board and the anxiety and stress appellants and their families are going through. Was a rationale given by the Department for ignoring the board reaching out at that time?

Dr. Cara McDonagh

The officials in the Department for Finance always acknowledged our concerns but there was never a formal response to the letter at a higher level. Our mistake was we should have sent the letter directly to the Minister for Finance at the time. We sent it to the officials we dealt with. We felt it would be brought to the Minister's attention. I cannot say whether it was or not. They always acknowledged our concerns but we were told there was not an appetite in the Department to change the scheme. They acknowledged it was difficult for us at times. During that phase we had a lot of very angry, aggrieved people. That would not be infrequent but it was a particularly bad phase. I was stood down from being chairperson at the time. I was on leave on the days we did the clinic and Dr. McNamara was the chair. The other board members decided on the letter. I was in total agreement with it and involved in it.

I cannot answer as to why we did not get a response. Maybe we should have pursued it but I followed up verbally and by email. We also had a meeting in 2018 in the Department of Finance and I expressed my concerns then. It was along with Dr. McNamara. I wrote to them by email after that to document that we had discussed the concerns. Nothing happened on foot of that. Before my time as Chair, I know predecessors had raised these concerns repeatedly.

The medical criteria are extremely difficult to apply. One does not have to be a medical person to read those and wonder how they could be fairly applied. Even taken as they are, there are many people they exclude who have genuine disability, need adapted vehicles and cannot understand why they cannot access anything. If one has a scheme, it has to be more equitable. Do not have a scheme that only applies to a small percentage of people.

It is not just that the scheme tries to give benefits to those at the severe end of disability. There are certain criteria which allow people who can drive a standard automatic vehicle access the scheme. It really is unfair but I cannot answer as to why we did not get a response.

The DDMBA was not the only group, committee or board reaching out to the Department of Finance or Minister at the time. We heard from the Ombudsman that his predecessor had written on numerous occasions concerning commitments not lived up to. Strong criticisms were made of the Department for not dealing with the issue or making the necessary changes. I said to the current Ombudsman that if the public knew what was happening and was able to put faces and names and see how cruel the system is, it probably would not accept it. However, it is off to the side. The witnesses are dealing with it and seeing the families who feel the system is failing them and venting at the witnesses. Can the witnesses explain, without personal details, cases where the current system involving the six criteria fails people with severe disabilities? I mean people who should, in the witnesses' view, be catered for but, because of the criteria, they have to rule against them.

Dr. Cara McDonagh

I mentioned in my statement that one can lose part or all of one's upper limbs and not qualify. A person missing an upper limb cannot drive a standard vehicle, for instance. Somebody who is walking but has weakness on one side and therefore needs adaptations to the vehicle, such as hand controls, generally does not qualify. Sometimes with children it is extremely difficult because they may be at the age where they should walk, developmentally, at two or three, but are not walking. They may start to walk so it is difficult. Parents are trying to prove their child will not walk. No parent wants to try to convince a doctor that their child will not walk. They spend most of their time doing the opposite.

The other difficult category is children with autism spectrum disorder and many behavioural problems. All they really need may be a special seat for their car or a bigger vehicle. They are not asking for all the scheme can provide but that is all there is. There is just a scheme that provides a large financial benefit when maybe they would be happy with a grant towards a vehicle or a special seat. It is difficult to bring a child into a room with three strange doctors and try, in front of the child, to talk of the difficulties they have in transportation. That should not be the way.

Nowadays we look at disability in terms of function rather than in terms of pathology, whether autism, epilepsy or stroke. We ask what the person can do and that is how we should assess people. We should ask what their level of function is and what they need in the vehicle, and they should qualify on that basis.

Dr. Nicky Scaramuzzi

Many people become desperate because they feel they are not supported, especially with children. People with a disability feel desperate because this is the only transport option they have. They have nothing else. We are not dealing with the cohort of people who cannot afford to buy the car even if it is tax free. I work in Dublin 8 and we do not get many applications because even with the primary medical cert, these people cannot afford a car. It is unacceptable that there are young people who cannot work for that reason.

We have a reversal of what should be happening. Instead of people coming in and being asked what they can do they are being asked to prove how bad they are. We tell them they need to be disabled and that in addition to being disabled they need to fit into these criteria. Then, on appeal, the majority are not disabled enough. It is a shameful way to practise. We are forcing a situation where in some cases people are desperately underplaying their levels of function in order to access transport. With children we place ourselves at risk because we tell parents their child will not walk. If that child does walk we are at risk because it is traumatic for parents. They could come back to us and say they were traumatised. The whole experience for the people who come in, whether they are adults or adults with a child, is traumatic. It is doing harm. This is where we are coming from and have been for a long time.

I thank those who have given testimony on this issue. I should mention I am a former member of the committee on the implementation of the UN Convention on the Rights of Persons with Disabilities, UNCRPD. This is an issue that was also discussed there. There are a number of key decision points that are extraordinary to me, including the decision to appeal to the Supreme Court. There is a Supreme Court ruling in this regard. It seems the State, through the Minister for Finance and the board, had been fighting these individuals who were seeking their rights but the board had been expressing very serious concerns. It is part of the culture in Ireland, unfortunately, that individuals have to seek their rights and the State pushes back at every stage. Will the witnesses comment on how difficult the process was given that they agreed with many of the concerns?

I find extraordinary the amendment made in the Finance Act 2020. The witnesses have mentioned there was no notification to the board on this legislation. It is not simply a matter that the criteria identified as problematic were left hanging. These criteria, which were narrow and not adequately delivering people's rights, were included again through new legislation. There was almost a new decision by the Government to make these the criteria for access to the scheme. Do the witnesses agree that such criteria, especially being introduced in 2020 after Ireland had ratified the UNCRPD, was an extraordinarily poor decision? It was a new decision to embed them. The witnesses mentioned they had been very keen to come up with a fairer scheme even if it were to be an interim scheme. Would it have been better if the Minister have engaged with the board prior to making changes to the Finance Bill in 2020? Would the witnesses have been able to engage with him on identifying new criteria that could be applied?

Dr. Cara McDonagh

I have to admit I did feel quite aggrieved when that happened. They did not notify us and that was not acceptable but I felt very aggrieved they thought it was a suitable solution. The Minister, in his defence, said it was an interim plan so that appeal hearings could proceed. I felt it was the wrong approach. When the Supreme Court decision was made on many levels I was relieved because I felt that now they would do something and they would change the scheme. This was what I harped on at to the officials in the Department. I thought that surely now we were going to do something.

Throughout that summer and even in the autumn I was regularly in contact with them, even at times when I was not working. I was asking them when we were going to meet and start to look at this. Nothing happened. One of the officials told me the Minister was thinking of putting in the medical criteria, and that he had sought legal advice and it seemed to be an interim solution. There was never confirmation of this. I was sitting with my team in hospital when I found out. The occupational therapists, who liaise with community doctors about referring patients for the primary medical certificate, said it would be up and running again in January. I had no idea it was going to happen.

At that point we were all decided that we would not continue and that something had to be done. The only power we really felt we had was to say we would not do it. He appealed to us to reconsider on behalf of the people who would appeal and get the primary medical certificate. At that point I said we needed to meet him because we needed to know that he understood where we are at and what needed to be done. That was when the meeting happened. He gave us many reassurances and seemed to understand the urgency of it. We came away from that really feeling that something was going to happen but very little did happen. There was some background work happening but it seemed to be at a very slow pace. There was nothing yielding from it. We were not getting updates or documents. Any contact was through me making contact to ask whether there was any progress. Ultimately I felt I could not do it any more. It became harder and harder to sit in front of people. We made decisions after seeing people but we had to write to people after listening to their stories. We explained everything. We explain about the criteria but it became increasingly difficult. We felt we had no other recourse except to resign.

The interim scheme was an extraordinary decision. It was something that had already been found to be inadequate after the UNCRPD was ratified. Will the witnesses comment on this? It strikes me that the six criteria laid out had come from a very paternalistic and narrow interpretation of disability and the needs of persons with disabilities. The witnesses have spoken about this. While I understand the State has a number of failings in a number of areas, and we know it failed in terms of the contracting of public transport to private operators, nobody doubts there are multiple issues to be addressed. Effectively, it cemented the same criteria again, albeit in interim measures. Was a different interim scheme possible? If Minister had engaged with the witnesses do they believe a good interim scheme could have been put in place, and remained until the wider review being spoken about was completed, which would have been at least not incompatible with the UNCRPD?

Dr. Cara McDonagh

There is no doubt it would have been difficult to put in place an interim scheme rapidly but in reality 16 months went by and, as far as I could see, nothing or very little happened. It could have been possible. We certainly would have been willing to work on it. There was a period of time when no clinics were happening due to Covid. We could have been working on it then. From the time of the Supreme Court ruling we could not participate in clinics. Then there was another lockdown. We could have devoted all of that time to it. We could have met twice a month when normally we would have been doing clinics. There certainly could have been progress.

The WHO does not look at disability now in terms of pathology. It looks at it in terms of function. I have always said that we need to move towards a less medicalised system and more towards how the person is functioning. We need to look at a graded system of supports. Some people need big adaptations or a special vehicle in which a wheelchair can be placed as they will not drive themselves. Other people just need a specialised seat or a swivel seat. It does not have to mean a big benefit to everybody who qualifies. It would be much better to have a graded system. People would be happy with that by and large. It would have been possible. It would been challenging but it would have been possible. If we had seen motivation and the will to start to work on it we definitely would have stayed in post.

Turning to risk, part of the responsibility of board members in respect of due diligence, etc., is risk assessment. Regarding the risk potentially created for board members, there is a risk associated with any public body or scheme in respect of the public duties concerning equality and human rights. Equally, the UNCRPD is law. The optional protocol will mean that individuals will be able to seek vindication under that rubric. It was mentioned that an incredibly high volume of complaints was made to the Ombudsman. As board members, was it the witnesses' sense that the decision not to address the issue was creating an inappropriate risk regarding the performance of the functions they were asked to undertake?

Dr. Cara McDonagh

There was the Ombudsman's request for reports, but also solicitors' letters and legal actions. This has gone on for many years. It is also important to say that the DDMBA sounds very grand, but the reality is that I also have a full clinical commitment. I undertook my work with disabled drivers as part of my role, but there was me and an administrator, while the doctors came in on a sessional basis. We had very little support. I refer to assistance with the sorts of legal issues mentioned. Many legal issues arose on foot of the ruling by the Supreme Court and it was hard for me to access the legal advice. The Department had sought it, but did not want to share it with me. In fact, it became quite difficult and stressful to deal with that aspect.

It was a big factor for us. We are clinicians, and not lawyers or specialists in international or disability law. We knew our situation was tricky and we spent a lot of time explaining the situation to people. Most people would have come away feeling we had understood their difficulties. There were probably fewer complaints because of that. Of course, people had the right to complain and we told them they had the right to complain to the Ombudsman if they were not happy with the decisions made. All the letters received by applicants contain that information. Most of the people getting this benefit when they appeal are people whose situations have progressed. They have progressive conditions. I am explaining this because the community care doctors often get this right. The people who generally do get to avail of this scheme after appeal are generally people whose conditions have progressed, which means they meet the criteria.

Dr. Nicky Scaramuzzi

To add to that, it is interesting to point out that in the assessment process we would have a mindful routine that we work through when we meet appellants. We would introduce ourselves and try to keep the process similar for each person. We would always ask them if they understand what they are with us for and what they are applying for. It would not be an exaggeration to say that nine out of ten people at the appeal stage cannot tell us what they are with us for. They have been told it is a driving benefit they are entitled to. Some people think it is the parking sticker - they may have come all the way from Kerry, for example, for something they could have got through their GP. Occasionally, we encounter someone who is incredibly well informed, but the majority of people do not know about the primary medical certificate, its definition, the legalities or the criteria. We send out the information to them in writing and we explain the situation to them. Some of those people are a bit shocked because they thought they had come to us so they would be able to get a benefit to enable them to buy a car or get an adaptation. They do not realise that this is done via tax.

We walk people through the process and they are shocked when they realise they are not with us to get a sticker. Therefore, people are not really being informed of what they are applying for. The mechanic or the social worker may have told them they are entitled to a benefit and they have applied for it. This is a problem. There is a large gap in what is being understood as being offered and what is actually being offered. People are on the back foot from the beginning of the assessment. They will often have come all the way from places like Cork, Kerry or Clare to try to fight for something and it will then have been exposed that they do not know what they have come for. This whole process is about education. It involves telling people what they are applying for, explaining the criteria and going through a detailed examination. People are not told the outcome on the day, because the group of three must sit down and discuss applications to ensure there is consensus. There are occasions where two members agree and one does not. It is necessary to get through that. Generally, however, it is found that there is full agreement with what happened at the first level.

At that first, community, level, there is a great deal of pressure. It is easier in the cities, but in the country and rural areas we get situations where the doctors are under pressure. What they do is to advise the applicants to appeal. Many of the applicants therefore come into us and say they went through the first level, but they were told they would get it on appeal. That means they have an expectation. As Dr. McDonagh said, the people who get this certificate on appeal are those who have a progressive condition like Parkinson's disease. It may be six months later when they are seen by the DDMBA, their illnesses will have progressed and, sadly, those people will then qualify. That is, however, a small percentage of the appellants. The majority will be exactly as they were when they were seen at the first level.

There is a lot of confusion as a result and all that builds into the atmosphere of anger and frustration. People arrive sometimes accompanied by legal representation. We ask their legal, or sometimes political, representative about the situation and they are unable to tell us what the primary medical certificate is. Those individuals are there representing people, but they cannot tell us what they are representing them for. Therefore, there is great lack of understanding about what is offered in this context and this plays into the lack of people being heard. All people want is to be heard and to be helped, as appropriate, and not to be discriminated against.

I am a member of the Joint Committee on Disability Matters. We are tasked with overseeing the implementation of the UNCRPD and this issue concerning transport comes up continually. There is a lack of accessible transport, especially in rural areas, and that means people cannot take up employment or educational opportunities. Sometimes it means that people cannot live independently. It is an issue that comes up consistently. Another aspect is that three schemes were operating at one time. The other two schemes were suspended in 2013. It is now 2022 and they have not been replaced, even though it was indicated at the time that alternatives would be devised. The criteria for this scheme are much too stringent.

I am delighted the witnesses are engaging with the national disability inclusion strategy subgroup and that they have been invited to consult in that context. What are the witnesses' feelings in this regard? Do they think progress is being made? I ask that because I think this process is supposed to oversee the three schemes or perhaps to come up with one new scheme that will be a better fit and be better able to support more people. Do the witnesses think progress is being made? Do they know if there is a timescale in this regard? Is there reason to be hopeful?

Dr. Cara McDonagh

I do not want to sabotage the work of the subgroup we are on by being somewhat sceptical. I hope we are going to make progress. We are trying to do so. I do not have a good understanding of where the national disability inclusion strategy working group is at. The impact of Covid-19 meant there were no meetings of the working group. I do not know if it has resumed meeting now. It has been agreed that we will provide feedback to the working group. I do not have a good understanding of where this process is at. I hope the group is starting to make progress and that it is meeting regularly. Otherwise, we will make our recommendations, and we are in the process of putting those together. We are examining international schemes and all that type of good work which exists. I do not, however, know where the working group is at in its endeavours.

The Deputy is correct in what she said. The two other schemes that existed were then abolished after the financial crash and the recession. We noticed in the following years that many people came to the DDMBA because they were not able to access those schemes. That goes to show that people are not necessarily looking for the major benefit this scheme gives them. They are instead seeking something to help them and it does not have to be a benefit on the scale provided by this scheme. This costs the Exchequer €64 million, but it only helps a small and distinct group of people. Therefore, the lack of the other two schemes has caused major frustration for people. They just want some help.

I would like more rapid progress to be made, but I am not a politician. I work in a very different sphere. I would like to see things having progressed further, given we are now coming up to two years since the Supreme Court made its decision. I feel like we could have had this all sewn up, delivered and ready for legislation perhaps six months ago, but it should certainly be done this year. Unfortunately, that has not happened.

The fact that there is no other scheme in place means people have no option but to apply under this one, especially if they are in rural areas. I recently attended an assessment for a primary medical certificate with a constituent on being asked to do so. The community doctor who did the assessment was very thorough. I discussed the matter with the doctor afterwards and we both knew the man was not going to qualify because of the stringent criteria. The doctor was completely frustrated with the system also. The constituent was refused. He does not have the use of one of his arms, so he could not possibly drive. Despite this, he still did not qualify. He has appealed the decision. Recently, he was asking me whether he should follow up on the appeal. The response to a recent parliamentary question I put to the Minister for Finance indicates that attempts to put together another appeals board have been unsuccessful to date. Does that surprise Dr. McDonagh? Apparently, there were no applications by the deadline.

Dr. Cara McDonagh

I suppose that if a medical practitioner hears four medical practitioners have resigned-----

Dr. Nicky Scaramuzzi

On ethical grounds.

Dr. Cara McDonagh

Even if one does not know why the others have resigned, one will be reluctant.

Dr. Nicky Scaramuzzi

You would be brave to take that on. In addition, what we do is very specialised. I am referring to the type of assessment and the way we explain it. We would have to train the candidates. They could not just land into the job and do a good job. We have learned over time to manage this situation so we can mind people in the assessment process and try to let them go home not feeling utterly devastated. That has to be shown. It would not work and would be wrong to appoint new people to a role from which four doctors have resigned on ethical grounds. There is something not right about that.

There was no application by 29 April but it is now being said there are some applications in. However, I do not know whether the applicants are suitable or whether there will be progress. I am concerned about the number who have appealed a decision and see no end in sight in having their appeals heard. As was asked, do they even know what is happening? There is a considerable lack of information regarding entitlements and supports available to disabled people in general, especially concerning transport options. It needs to be addressed immediately if we are to implement the UNCRPD.

Dr. Cara McDonagh

One might say we should produce information and have an information campaign but one of the problems is that ours is not a big organisation. I am the chairperson and deal with matters, except at the clinics when the other doctors come in to assess the appellants. We have an administrator who is extremely good and has to deal with many people who are very aggrieved, but we do not have any other support and run on quite a narrow margin. We have an information leaflet but we should have much more. There should be much more backup. Legal issues, freedom of information and GDPR would need to be examined in a future scheme.

The applicant I accompanied actually tried to make his disability seem worse than it was.

Dr. Cara McDonagh

Which is totally wrong.

It is totally wrong.

Dr. Cara McDonagh

It should not be about that.

I thank both doctors for their presentation. I apologise for being a little late. I was at another meeting so I missed some of the earlier presentations. Some of the questions I wished to ask have already been asked.

The criteria are very strict. Both guests referred to them in their presentations. Let me give a small example. Only last week I raised with the Department of Finance in a Commencement debate the replacement of the board and the filling of the positions. I have constituents who have been waiting from mid-term last year for their appeals to be heard. One constituent was in an accident and has plates in an arm, meaning their arms are not quite as flexible as those of the rest of us. The person was turned down and is waiting for the appeal. Should there be some sort of in-between board dealing with primary certificates for those who end up in a position like the one I have described? The individual’s movement is quite impeded. An electronic car or a car that would not require much arm use would certainly be suitable, but I am not sure the individual will qualify after an appeal once the new board is put in place. I understand that the possibility of an appeal is being assessed.

One of the delegates said there should be broader criteria. Could they elaborate on their thinking in that regard? I agree that the criteria are too strict for some to qualify, yet they are not able to drive a normal car with a gearstick or otherwise and are in need of the primary certificate.

Dr. Cara McDonagh

I do not think there is any place for the criteria. One cannot just amend them and carry on as before. The person the Senator described would probably be happy if he or she got a grant to adapt his or her vehicle. That is what I was talking about earlier in terms of a graded scheme. Some people need a very much adapted vehicle into which they can bring a wheelchair and fix it in. There will never drive themselves so it is a matter of being transported. People like that often work. It might be surprising to people but I have patients who work despite quite significant disabilities. They need a vehicle. Most of them will qualify, but in the scheme there is only one benefit available. Most people want a swivel seat or an automatic car that might be a little more expensive. Alternatively, they might want a special seat or bigger car to separate the children because of behavioural problems. There are all sorts of reasons. The scheme should not be about ascertaining somebody’s diagnosis and whether he or she is wholly or almost wholly without the use of his or her legs; it should be about determining what the person is able to do or not able to do. For instance, the Irish Wheelchair Association's driving instructors assess people. Where I work, they are assessed along with an occupational therapist in the car and they decide what the person needs. It does not have to be a doctor doing this. Maybe a doctor will have a role in some cases but the scheme needs to be more tailored to what we now understand about disability and how we manage it. It should be about function rather than disability or dysfunction. Most people come to us and do not even realise what the scheme offers. They just say they want a swivel seat because it was really difficult for them to get in and out of the car. You might need controls or whatever it might be. Another request is for a bigger car or a special harness on a seat for an older child who needs to be properly seated in a car.

We have many ideas. At meetings of the subgroup, we communicate all this. Those concerned are taking it on board.

Dr. Nicky Scaramuzzi

There are many people who would be really happy just with a simple grant towards adaptation. I am referring especially to people with children with challenging behaviours who whizz around the inside of the car. A simple, specialised seat restraint might just transform the people’s lives such that they could go from A to B. It is often a question of a simple solution, but what we are offering is a very generous lifelong benefit that is great but gives an awful lot to very few. Even if we had, as an interim measure, the ability to grant a certain amount of money to people for an adaptation, 50% of people we see would probably be quite happy with that. That is the sort of thing they are looking for. There are looking for help with adaptation.

I agree with both delegates because some small grants would certainly help those in the circumstances in question. They would not necessarily need the primary certificate. If they were given a certain amount of money to adapt their cars so they could drive themselves, they would be quite happy. I hope the reviews and suggestions are taken on board in the review that is taking place.

It is clearly important that the scheme is brought back up and running as quickly as possible. There are many people out there who could avail of it. I am not laying the blame at anyone's door. However, I believe it must be brought back up and running again as quickly as possible, perhaps in a more reformed way.

I am dumbfounded at how the Department dealt with this issue over the three years from the initial issues being raised to correspondence to the Minister and a meeting with the Minister. I have the pre-notes outlining the approach the Minister was going to take. It is very clear that commitments were going to be given. In the notes, it says that answers to some of the questions would be provided at the time of the finance Bill. It appears that very little, if any, work had been done leading up to that. One of the documents we have, dated 27 October 2021 - which would have been shortly after Dr. McDonagh's resignation letter - deals at the end with a number of issues such as how they were going to try to get the NRH to appoint a new chairperson, which obviously was not successful. The last point, on managing communication, states that given the high profile of the disabled drivers scheme and of the review managing communications and messaging about the DDMBA resignations, it is extremely important and may be useful to discuss with the Minister's advisers the best approach in this regard. We found out from RTÉ on 11 January that there was no longer a board. I find it astonishing that the House was not informed. There was no public communication. There was nothing in regard to this months after an entire board resigned. It is interesting that in response to our freedom of information request, we see all the other letters - you get a log from the Department of Finance which tells you when the letter was created, by whom it was assessed and so on - but there is no log for the letter the Minister sent to Dr. McDonagh, as chairperson. That is quite interesting because it arrived the day after she issued her resignation, while the Department claims it was written beforehand. The log would be very interesting.

Dr. Cara McDonagh

I got it that day, literally within an hour of-----

Dr. Nicky Scaramuzzi

It was uncanny.

It is also uncanny that a log is not provided in the response to the freedom of information request. Such a log would tell us exactly when the document was created because the log is linked into the system. The letter that the Minister sent to Dr. McDonagh indicated the approach he was taking as he looked forward. He was suggesting that he was going to set up a working group, of which Dr. McDonagh is now part, to operate concurrently with the work that would be done by the NDIS working group on behalf of the Minister for Children, Equality, Disability, Integration and Youth. He made the point that it was important for the members of the DDMBA to see substantial progress being made towards a new scheme. He said that if there was a delay in the secondary approach, the Department of Finance could implement the changes. Is it Dr. McDonagh's understanding that this is still on the cards? From our knowledge, the only meeting that took place in regard to the other working group with which she is concerned was on 26 January last, which coincided with the Minister being questioned here about the emerging information that the board of appeal had resigned. Is there still an approach from the working group of which Dr. McDonagh is part that could progress some of these matters independently from the work being done by the NDIS group?

Dr. Cara McDonagh

As I understand it, we are meant to be feeding information into the task group which is looking at all the benefits for transport for people with disabilities. I do not think we necessarily have a remit to create a new scheme. We are charged with informing them of the issues with the current scheme, particularly the medical criteria. It is actually called the criteria subgroup. We are currently looking at international schemes. That is what we looked at during our last meeting.

Dr. Nicky Scaramuzzi

We are especially looking at what is available within Europe. Nothing like this is available anywhere else. We are getting some ideas to use a bit of creativity. Part of it is that we have to let go of the notion that the criteria need to be adjusted. The criteria need to be put aside. We need to look at disability in terms of function. We need to create a scheme that has levels where people with certain disabilities can access what is appropriate for them, in order to get them to participate in society. It baffles me that the priority is scrabbling about to put a new board in place. That should not be the priority. To be honest, approximately 1% of those waiting for appeal might have progressed sufficiently to get it on appeal. We are not actually harming a huge number of people, but people are being harmed by being continuously assessed at primary level and turned down due to a set of criteria that is not fit for purpose. That is a problem. I do not believe that the priority is in place to get this thing rewritten and present the Irish people with an equitable scheme for people with disability to access transport. I think the priority has been to put together a new board to continue, in what could be a very questionable way, what is not working. That is not good enough. We need to prioritise sitting down. We know what people with disability would like to help them with transport. We are a huge resource. We have both been involved in this for ten years. We know what they want, and we want to help them. We just need to sit down and get out of the mindset of rebuilding what is not working. We have to start from the bottom and work out what is going to work for transport for people with disability. It is there and it is available; we just need to reset our mindset and look at it.

Different individuals have different needs. Indeed, needs evolve as people evolve, as disabilities worsen or as medication improves. Without underplaying the complexity of this matter, how to deal with it is obvious enough. It is a question of taking a person-centred approach as opposed to trying to get everybody to fit into a box, and anyone who does not fit into the box is forgotten about. I presume the Department is looking at this from a cost perspective.

Dr. Nicky Scaramuzzi

Absolutely.

This is the problem. To meet the needs of persons with disability comes with a price tag that the State is not willing to deal with.

Dr. Nicky Scaramuzzi

Although, €64 million is a lot of money. It is giving an awful lot. This is a scheme for life. You have people who improve who are still availing of this scheme. We recently revoked it from someone who had done a marathon. The Revenue Commissioners let us know. I do not think anything like this should apply for an entire lifespan. There is a need to review things, especially with children. The premise is that people are going to be the same with their disability, but some people will get better, other people will get worse and technology will improve things. The concept has changed since this scheme was put together. As we say to people, being disabled in the 1950s was different from being disabled in the 1980s or 1990s. The whole definition of disability has absolutely expanded to include many more people than was the case 50 years ago. We need to build that into a scheme that grows, changes and looks at function. The most important thing to get across today is that it should be about function, not diagnosis. One person with multiple sclerosis can function perfectly well, whereas another person with multiple sclerosis might be in a wheelchair and need a hoist to be transferred. The actual words of the diagnosis should not be relevant. It should be about what a person can do; for example, what a person with a hoist transfer needs in order to be able to get to work as a coder in a software company. It should be about the different things needed by a person who has really bad balance issues.

It does not necessarily have to be very expensive. For the lifespan of a car, people could have an adaptation and be allowed to renew it every five years or whatever period is sensible. That would work.

Dr. Cara McDonagh

The Irish scheme is the only one that allows people to buy a new car every two years. Across Europe, five years is the next most frequent interval.

Dr. Nicky Scaramuzzi

It is very generous.

Dr. Cara McDonagh

That is a saving that could be made.

Dr. Nicky Scaramuzzi

It could be extended.

Dr. Cara McDonagh

It is reasonable for a person to hold onto the same car for five years. Alternatively, there could be cars for lease. There are many options. We are certainly not experts on it. There may have to be medical oversight, but moving away from it being three doctors-----

Dr. Nicky Scaramuzzi

There are occupational therapists and physical therapists who specialise in these areas, such as rehabilitation, and would be well placed to give people solid advice on the transport options that are suitable for them and to help them implement it. It is there and available; we just need to build them into a scheme.

I appreciate our guests coming before the committee. One of my questions looks forward while the other looks back a little but also forward at the same time. Obviously, this committee is responsible for finance and it deals with how matters are transposed into law in terms of the taxation end of it. I am taken by the comments of our guests, but also those of the Ombudsman, regarding the scheme, the way it works and the fact that the provision of support is only available to people who already have money to expend. Even if that was got right and it was still based on that type of criteria, that ignores so many families with disabilities. The case that hit home with me was that of the parent of a child with autism. The child was grabbing his parent from behind but, during the lockdown, it was the only comfort that could settle the child. That was taken away from him because the scheme does not provide for the special seat that he needed. That case involved a small amount of money that would transform the child and his siblings. Anyone who is a parent of children with autism knows that it affects all the family. I am digressing a little.

Obviously, we have to come up with our own solution, but is there an international model that has done this better than us or to which we should be looking? I know that our guests indicated back in 2020 that they would not hear appeals but then reconsidered that. Part of the letter that came from the Department or the Minister at that time was read out. In my view, that letter was unfair as it nearly put the responsibility on our guests and suggested they were failing individuals, whereas it is the Department that has failed them over several years. The board did reconsider at that point. Would it reconsider again and get involved? I refer to the expertise our guests have amassed over a long period. Would they get involved under a new scheme? Is there any possibility that they would work under the existing scheme again?

Dr. Cara McDonagh

I am not sure about working under the existing scheme again, to be honest. It was a really difficult decision for us to reach. We felt we had been back and forth with the Department and really tried to push. For want of a better phrase, we stomped our feet and said we would not do it. When the Department put the criteria into legislation we stated we would not do it, but then agreed to do it on the basis that the Department would do something about it. Nothing happened, however, and it just got too much. We believed the only way to make change was to pull back from it. We did not do so without thinking of the people who then would not be able to attend for appeal. We granted only a small percentage of overall applications but there is no other appeal mechanism. Applicants can go through the assessment process after six months in the community but it would still be better if we were running appeal clinics. Since we resigned, there have been meetings of the subgroup but, as the Deputy pointed out, there has only been one meeting of the national disability inclusion strategy working group tasked with this. I believe that impetus is lacking. If there was such an impetus, maybe we would reconsider. I do not know. I cannot commit to that.

Dr. Nicky Scaramuzzi

There is an element of being disconnected.

Dr. Cara McDonagh

If there was a new scheme, we would certainly consider that.

Dr. Nicky Scaramuzzi

Absolutely.

Dr. Cara McDonagh

There may need to be medical involvement in a new scheme but it has to be a different approach. As I stated, that may involve occupational therapists and driving instructors. More of a multidisciplinary approach is needed.

I should say a few words on this issue. I spent almost my entire political life, which has been a long one, in reverse while arguing the case that our guests are arguing correctly and that members have been putting forth as well. It was with frustration that every time I saw a refusal, I immediately went back to have it reviewed and to chase it. I refer to the frustration that comes with dealing with something that is obvious. A passerby on a bicycle would be able to come to a conclusion without half the nonsense that has been going on. I strongly support the points that have been made by our guests and the members of the committee. We should communicate with the office of the Minister and also with the Minister for Health because there is a joint responsibility there. The criteria have to change. Dr. Scaramuzzi stated that certain matters mean different things to different people. One person's disability is another person's challenge. A person with a mild disability may be unable to deal with the challenge whereas another person with a serious disability may be well able to conquer it.

Dr. Nicky Scaramuzzi

Absolutely.

It is a significant area of difference. It is all in the ability of the individual to deal with the situation. All present know people who have dealt with serious disabilities and other people who have other disabilities but just do not have the confidence to get involved to the same extent. We are familiar with the issue. It is appalling that it has taken this long. I cannot remember who designed the scheme but they must have gone out of their way to make it impossible to qualify for it without going to the most extreme measures. There are still people who do not qualify and have been dismissed but will be coming back. If members agree, the committee should do its bit, contact the Minister and keep our guests informed. They should be kept informed of the progress we are making. Is that agreed? Agreed.

I thank Dr. McDonagh and Dr. Scaramuzzi for coming before the committee and giving of their time and expertise. I thank the members who contributed in person and virtually.

The committee stands adjourned until 12.30 p.m. on Wednesday, 18 May, when we will meet in private session in advance of the public session at 1.30 p.m. We will meet with representatives of Ulster Bank and KBC, and later with representatives of AIB, Bank of Ireland and PTSB, to discuss the impact on customers and banking of the withdrawal of Ulster Bank and KBC from the Irish market.

The joint committee adjourned at 4.18 p.m. until 1.30 p.m. on Wednesday, 18 May 2022.
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