‘Outsider’ on the inside

“I was always a bit of a maverick and an outsider,” Minister of State with special responsibility for Disabilities Finian McGrath tells this newspaper.

“Now I have found myself in a very unusual position, because as an Independent, I just never thought I would be a Minister.”

Minister McGrath was speaking to the <strong><em>Medical Independent</em></strong> (<strong><em>MI</em></strong>) in his office at Leinster House at a pivotal time for Government policy affecting the lives of people with disabilities and their carers. Last year saw the publication of the <em>National Disability Inclusion Strategy 2017-2021</em> and there are further developments imminent, with the ratification of the United Nations (UN) Convention on the Rights of Persons with Disabilities and the creation of personalised budgets for people with disabilities.

In May 2016, Minister McGrath entered into the current ‘partnership Government’ with an agreed programme as part of an Independent Alliance, and although he is a Minister of State, he sits at the Cabinet table.

<h3><strong>Convention </strong></h3>

At our interview late last month, Minister McGrath said the ratification of the UN Convention on the Rights of Persons with Disabilities was upcoming. It was subsequently ratified by the Dáil on 7 March and this paves the way for formal ratification by Ireland at the UN.

“I am the person who put it in the Programme for Government; all the political parties were talking about it for 10 years and they did nothing about it,” Minister McGrath told <strong><em>MI</em></strong>.

“People are giving out to me about the delays, but I want to bring all the groups with me and I want to consult them.”

Ireland will be the last of the European Union’s 28 Member States to ratify the Convention, a situation that has seen successive Irish governments receive criticism from the disability rights movement.

But Minister McGrath believes that ratification represents a significant moment.

“The most important thing for me as Minister of State, and as a parent of a daughter who has an intellectual disability, is that it says that Ireland is changing direction,” said the Minister.

“It sends out a strong message to every person with a disability and their families in this country that ‘we respect your rights as a citizen in your State’; it’s based on equality, it’s based on citizen rights, and it’s based on the issue of inclusiveness. It means that we are no longer doing the charity model, no longer doing the medical model; we are doing the social care model, which is mixed in with equality and rights, and I think that is an important statement.”

<strong>Minister of State with special responsibility for Disabilities Finian McGrath</strong>

But some within the disability rights sector have raised concerns that the ratification will mean little without funding.

“Of course, you are right to ask the question. Having the rights and ratifying the UN Convention without investing in the services, and without developing the services — and without putting the person with the disability at the centre of the services — would not be good enough for me,” he said.

“My job is to ratify the UN Convention, but as I’m doing it, I want to reform, invest and change the whole direction of the services. They should not be designed for the HSE, or the Department of Health — they should be designed for the person with the disability.”

<h3><strong>Liberty </strong></h3>

According to the Minister, delays in the ratification in the last year have, in part, been due to legal difficulties around ‘deprivation of liberty’ — for example, where a family has placed a family member in residential care and the person may not want to be there.

Minister McGrath has been involved in a consultation process with disability groups and families to seek some legislative solution to this issue. The Department of Health prepared a draft Heads of Bill on deprivation of liberty safeguards, which will form a new part of the Assisted Decision-Making (Capacity) Act 2015 (it also issued a consultation paper, with the closing date for submissions having passed on 9 March last).

The Department says legislative clarity on the issue of deprivation of liberty in residential facilities for older people, those with a disability or mental health issues is required in order to meet obligations under the UN Convention on the Rights of Persons with Disabilities.

“It is a significant issue,” said Minister McGrath.

“The ‘hurlers on the ditch’ were saying ‘ratify the UN Convention’, but you have to look at the deprivation of liberty. You are talking about people with Alzheimer’s, people with dementia, in nursing homes, people with disabilities in residential care situations; we are talking about people with mental illness who might not have the capacity to make decisions.

“Of course we want to protect their rights, but we want to ensure that we get the balance right in relation to that, and that is a complex issue. There are thousands of people up and down this country [who could be impacted by this].

“I want to make sure that the families and advocates are on board. There is a huge debate going on. It impacts thousands — I want to get that right. Hence my so-called ‘cautious pace’.”

<h3><strong>Personalised budgets </strong></h3>

The Minister also told this newspaper he would shortly be receiving the report from the taskforce on personalised budgets for people with disabilities.

A personalised budget is a sum of money which would be funded from the HSE’s budget for disability services and provided to an eligible person with a disability to meet their needs for personal social services and supports. The Department of Health held a consultation last October to assist the taskforce to develop plans for the introduction of a system of personalised budgets in Ireland.

Minister McGrath said that, in the disability community, there were some parents and adults with disabilities communicating to him that they were unhappy with the manner in which funding for personal social services and supports were being deployed.

“From my own research and listening to the National Disability Authority, there is about 14 per cent of the disability community in Ireland who are interested in personalised budgets. So basically, this is to give people some control and give them a choice.

“Eighty-six per cent of people with disabilities and their families will be happy with their services. I have a daughter with an intellectual disability. I am very happy with her service. But I have friends of mine who are not happy with their service. They are looking at the idea of using the money and spending the money under their control.”

<h3><strong>Controversy </strong></h3>

Since 2016, the Minister has made headlines on a number of occasions for controversial comments on public health issues — such as when he said he would like to see more smoking facilities in bars and restaurants, and when he questioned the HPV vaccine. These comments were severely criticised by many doctors and others working in healthcare. Minister McGrath has since rowed-back on these remarks.

“Of course I did cock-up in relation to HPV; I cocked-up on the smoking issue,” the Minister admitted.

“But again, when you are in opposition, you are more of a free spirit and you can say what you want and think what you want. But I do think some over-reacted to some of my little flaws of my personality.

“Because at the end of the day, everyone is human; everyone makes mistakes. But the thing about me is, if I make a mistake, I put my hands up immediately. I don’t try and bury it or I don’t cover up, or not answer the question. I know I made mistakes and that’s life.

“If I have a few frailties, I like to have a smoke, a pint with my friends — that’s me. And I don’t like preachy people, by the way,” he said, smiling, “and we have a lot of preachy people in health.”

<h3><strong>Sláintecare</strong></h3>

Regarding broader health matters, Minister McGrath said he “fully supports” the <em>Sláintecare Report</em> and believes it is “excellent”.

Asked whether he thinks the Government and Taoiseach have shown enough leadership on the cross-party report, he insisted there is “political commitment from the Taoiseach, the Minister for Health and all the ministers. We are big supporters of Sláintecare and we want to implement it, and of course it’s going to take time to implement it.”

Minister McGrath said that investment announced in the <em>National Development Plan 2018-2027</em> and other recent health spending is all part of laying the foundations of Sláintecare.

“It is all part of the building blocks for Sláintecare, to build-up our services and improve our services. But I accept the point [from some in opposition that] we need to ‘up our game’. We need to be strong. I am fighting fires in disability every day and sometimes you do take your eye off the ball as regards the broader picture.”

<h3><strong>‘Red line issue’</strong></h3>

Following the publication of Budget 2018 last year, there were some media reports that Minister McGrath had threatened resignation over concerns about proposed funding for disability services.

“To me it shows you have to fight. I don’t like fighting or getting into rows with ministers. But when it came to the €3 million in funding for the Decision Support Service, I had to fight like hell for that.

“Because if I didn’t get that €3 million in the Budget that would mean the service couldn’t start and be set up. That service is the anchor to ratifying the UN Convention on the Rights of Persons with Disabilities. Yes that was a red line issue for me, no doubt about it.”

Minister McGrath said there was a further “crisis” after Christmas “in respite care services and I had to say to the Government ‘listen I need at least €10 million here to deal with the emergency respite crisis’.

“I had to bang the table and fight like hell. But that’s my job. There are other ministers in education, social protection, etc, across the table fighting for their thing. But my job is to bang the table to fight for people with disabilities. So far we have done okay.”

<h3><strong>Public </strong></h3>

Minister McGrath believes the public need to become more engaged in health policy and health issues in general.

“I feel that broader society doesn’t take healthcare seriously enough,” he said.

“They kind of leave it to the politicians. They leave it to the HSE, leave it to the doctors and nurses. I would like to see more public engagement with it.

“But I just feel health has to be the number one issue in this State. Of course you have to have a strong economy, etc, but health has to be the number one issue. We need the public to be involved in the <em>Sláintecare Report</em> to help us drive it.”

<div style=”background: #e8edf0; padding: 10px 15px; margin-bottom: 15px;”> <h3><strong>Minister McGrath on…</strong></h3>

<strong>The future of the Independent Alliance</strong>

“I do think there is a future for the Independent Alliance. I think in fairness, some of my other independent colleagues that ‘sat on the pot’ during the talks for the Government; I think they regret it now privately. I get this feeling, they are changing. Even some of the opposition parties. Look at the mood change going on in Sinn Féin. What’s wrong with people from different political backgrounds working together?… I actually think this is part of new politics — that people from diverse backgrounds can come together and work together in the interest of the country; a lot of the other politicians ran for cover, ran to the hills and refused to form a government. The Independence Alliance — I think we are not getting gold medals for going into Government, I accept that and the opinion polls put us on around 4 per cent. But I do think there is a future for this kind of Government.”

<strong>Being a Minister rather than in opposition</strong>

“Completely different compared to when I was in opposition. I am an outsider who is walking around on the inside. It is very slow; it can be frustrating. But then when you get things done, I always say to myself, ‘if I can get 10 or 12 things done as Minister, I will be delighted’. I already have seven or eight done, so I’m thrilled. But I need to get a few more done before this Government runs out.”

<strong>The ‘disability community’</strong>

“You see, this is part of the prejudice that is against people — we have to change this mindset. People talk about the ‘disabled community’ but this community is a very diverse group. They have lots of different ideas, which I think is brilliant. But the bottom line is, there are hundreds of people with disabilities and their families, and they all have different views and solutions. That is why I am saying the three key things for my ministry is invest, reform and put the person with the disability at the centre of the service.”

<strong>Future funding of the sector</strong>

“We have a hell of a long way to go. We forget that the disability services were starved for 10 years during austerity. I’m trying to catch up here.”

<strong>Talks over the formation of Government</strong>

“When we walked into the talks with the Government, we walked in with five independent TDs and we walked out with four ministers. The other issue is, we got this one for disabilities because we wanted it, crucially, at the Cabinet table. Not just to be a minister, but to be at the Cabinet table.”

<strong>Coalition Government </strong>

“How the hell can we lecture Sinn Féin and the DUP to get into government [together] in the North when we don’t have diverse governments down here in the South as well?”

“I am very excited; every day, I love coming in here. I love my day job. I love meeting people with disabilities, I love working with them and working on broader issues.”

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<strong>Pictured with Minister of State Finian McGrath at the official launch of Prosper Meath on 23 February are service-users and piano players Ms Andrea Buckley and Mr Michael Jordan</strong>

<em>Photo: courtesy of the Prosper Group</em>