Margaret Lennon is brutally frank about it all.
"What has happened is effectively my child has been made a prisoner in the home," she says, "denied any meaningful interaction with the outside world because the medical condition prevents the child from walking any distance, so on a good day the child can get to the car and that's it."
Margaret, who lives in Kilkenny, is a longtime campaigner for the rights of those with disabilities, primarily through the Facebook DCA Warriors group. But she is somewhat reluctant to push her child, and their own struggles, front and centre, even though that is exactly what has happened.
Last June, Margaret, alongside Amanda Reeves from Clane in Co Kildare, secured a Supreme Court ruling against the decision to deny their children Primary Medical Certificates (PMC). Once obtained, a PMC opens the way for those who qualify to apply for a range of tax reliefs that would allow for the adapting of a car and upgraded wheelchairs.
When that doesn't happen, you end up like Margaret: dealing with your own health concerns while lugging a 38-pound wheelchair around. Sometimes she is physically unable to do so. "All the delay, all those years," she says at one point.
A little more than 100km up the M9, in Clane in Co Kildare, Amanda Reeves is on the road. In the rear of the car is her four-year-old daughter, Alyssa. The family's trek towards securing a PMA is almost as old as the little girl chatting away in the backseat.
Alyssa has spina bifida and hydrocephalus and the family first applied for a PMC in 2016. "She was quite young but I knew of others born at the same time as her and they were granted it," Amanda explains.
That application was declined. They applied again in 2017 and were refused again. They appealed it in 2018 and were refused again, "and then that's when we went legal".
She refers to the "postcode lottery" - "I know myself other families with spina bifida in Kildare were finding it very hard to get them [the PMCs] whereas in Dublin they were getting them a lot easier.
"We were just told she didn't meet the six criteria."
The process was problematic. She tells of one meeting with a medic in which she was told she was "writing my child off by applying so soon" and that she should have been taking folic acid (she had been). "That was the mentally we were dealing with, that she is disabled because of you," she says. Amanda also lodged a complaint about aspects of how the appeal assessment was conducted and received an apology.
Margaret first brought her child for a PMC assessment in early 2017. She says it got off to a bad start, with the office itself not wheelchair accessible. She says on a home visit a HSE occupational therapist had told her that a motorised chair was the only safe way for her child - who has Ehlers-Danlos Syndrome and POTs Syndrome - to get around
That recommendation was later effectively withdrawn, the application unsuccessful, likewise the appeal. There were some peculiar aspects to it all. Labour TD Tommy Broughan tabled a parliamentary question in January 2018, asking if anyone with Ehler's Danlos and POTs had been turned down for a PMC. He was told no one in that category had been refused - but Margaret knew her child had been turned down.
Margaret argued that the Disabled Drivers Medical Board of Appeal (DDMBA) had exceeded its remit in the manner in which it refused the family PMC on appeal. The Lennons sued the Board and Minister for Finance. Following the rejection of their appeal, Amanda had seen on the DCA Warriors page that a legal challenge was being brought and she contacted solicitor Stephen Kirwan of KOD Lyons, who receives nothing but praise from both women for his efforts. Amanda joined the action, which was lost in the High court and later in the court of appeal. But then came a win in the Supreme Court, with judgement handed down on June 18 last.
And then... nothing. Months passed, without the PMCs being processed, despite assurances they would be, and then it emerged that the application process had been 'paused'.
According to the HSE: "There was a Supreme Court judgment on June 18, 2020, in relation to this scheme. Following a request from the Minister for Finance, the Minister for Health has instructed that there should be no medical assessments of applicants for Primary Medical Certificates until further notice, pending clarification of the legal position through the Department of Finance."
Margaret says "we have effectively opened the floodgates in the Supreme Court ruling", but it seems the government had dammed it.
"The whole thing to me is that the spin in the media has been very upsetting, the inference is that the scheme has been suspended because of the two people who took the case and Supreme Court ruling," she says.
Getting a PMC, it turns out, hasn't been that easy, especially if you are initially unsuccessful. Figures from the HSE, which oversees the assessment with a Senior Area Medical Officer, show that 1,933 applications for PMCs were approved last year and from January to June this year a total of 405 applications for primary medical certificates were approved. But if you are turned down, the chances of success on appeal are wafer-thin.
The DDMBA received 684 applications last year and assessed 423, after 261 people did not attend their appointment for appeal, cancelled or declined to attend. Of those assessed, nine were reversed - a success rate of just over 2%. The turnaround time for appeal in 2019 was four months. The DDMBA received 214 appeals between January and March this year, of which 116 were assessed. Four were successful.
Back in 2013, following a critical report by the Ombudsman regarding the legal status of the Mobility Allowance and Motorised Transport Grant schemes in the context of the Equal Status Acts, the government decided to close both schemes to new applicants. The PMC became one of the few avenues available to families seeking additional help.
In a statement, the HSE pointed out that the Disabled Drivers and Passenger Scheme is operated by the Department of Finance, that HSE Community Medical Doctors (CMDs) carry out independent medical assessment of applicants for this scheme and that the appeals process is an independent process and is operated by the
DDMBA. One can see why the Department of Finance would have a role over something which requires Revenue to be involved, but as Amanda points out: "I found it fascinating that the Minister for Disability is nowhere in this scheme at all, that it's the Minister for Finance."
According to Dr Cara McDonagh, Chairperson of the DDMBA: "It is the jurisdiction of the Department of Finance to suspend the scheme. Appeal hearings for the PMC at DDMBA were suspended on March 16, 2020 due to the Covid-19 pandemic. Following the Supreme court decision in June 2020 we were instructed by the Department of Finance to suspend future appeal hearings pending a full review of the legislation and regulations."
Both Margaret and Amanda say they know of people who have been granted the PMC since June, citing the Supreme Court judgement. Pressure was building through a constant stream of questions in the Dail by backbenchers. Eventually, Amanda and Margaret received their certificates and just this week, on Monday, Denis Naughten TD said he had been informed by the Minister for Finance that the HSE has been directed to recommence the processing of Primary Medical Certificates.
In exchanges during Committee Stage of the Finance Bill, Minister Paschal Donohoe said he has instructed the HSE to start processing applications for the Primary Medical Cert in the same manner as they did before, and that he intends to carry out a review of the Disabled Drivers Scheme next year.
Deputy Naughten questioned if public health doctors will be in a position to process a backlog of 1500 applicants and if the same interpretation of the rule will apply. Minister Paschal Donohoe said the rules that applied last year for both applications and appeals will continue to apply until the review of the scheme is completed next year.
Until shortly before the confirmation of the restarting of the scheme, the HSE had been unable to say what - if any - changes there might be in how the process is conducted, or whether any current applicants would have to re-apply.
As we speak, Amanda is actually in the car, bringing Alyssa on long-overdue and very important business.
"I got stuck straight into it," she says, "I'm on my way to the motor tax office now because I am exempt from motor tax now, and my car is approved as an adapted vehicle and it has been adapted as well and we have applied for a partial refund on VRT on the car as well."
As soon as she knew the PMC was finally on its way, she set about making it work as quickly as possible. Even the application for the toll exemption has been lodged.
And yet still there was a little smudge on the paperwork. The PMCs for both families were sent to the wrong addresses. Margaret and Amanda say the HSE were notified that they had changed addresses, but it appears there was a breakdown in communication somewhere along the line.
"I knocked on my old house and retrieved it and had Alyssa's name was wrong, they had misspelt her name.
"I said I have to give this to Revenue, I have to give them the right name."
Margaret hasn't reached the same stage as Amanda in her efforts to turn the PMC into a tangible benefit for her child.
"As regards to ourselves, people seem to think that getting PMC you are getting a free car - you aren't," she says. "We are going to have to seek a very large loan to get a car because other schemes were paused seven years ago.[reports of the Ombudsman regarding the legal status of the closing of the Mobility Allowance and Motorised Transport Grant schemes in the context of the Equal Status Acts following critical reports by the Ombudsman]. We have to seek private assessment now for a wheelchair sitting for our child, and probably a privately [bought] powered wheelchair."
For both women, the end of the road may be in sight but there are still a few potholes.
"It's bittersweet," Amanda says. "The whole goal was to change this for everybody. For so many families it's all paused for them."
That now seems to have changed, although questions still remain, including why, if the scheme is to continue the same way it had been operating up to the Supreme Court judgement, it had to be paused for close to six months.
According to Margaret: "For me, it's vindication that these children were entitled to the certificate in the first place and the case should never have had to be taken."
As ever for parents of children with disabilities, it's a fight that she feels had to be taken with one eye on the future.
"It's a battle that we needed to fight for when we are not here."