Reilly should tackle reform not attack disability services


OPINION:I LISTENED to Michael McKillop on radio accepting his gold medal at the London Paralympics and was gripped. He spoke with eloquence as he stated that his medal owed much to the support of his mother, his family, his friends, his girlfriend and all those who supported him in his efforts over the years to get to London.

His sheer authenticity and his humility demonstrated what sport is about, but also what is possible if people are supported to achieve their dreams to be the people they want to be.

That same day, I joined another group of disabled people camped outside Government Buildings as a Cabinet meeting was taking place. Here too, the stakes were high. Instead of receiving medals they were losing something just as precious – their personal assistants, home helps and homecare packages.

People like John Roach, Leigh Gatt, Martin Naughton and countless others spoke with equal amounts of passion and eloquence as they described how personal assistance had supported and liberated them to do the most basic of human functions like getting out of bed, bathing or eating.

With this loss, they were acquiring instead futures of isolation as hospitals and residential homes loomed – places where choices are ultimately determined by others and dreams are snuffed out.

What a week to choose to kick disabled people in the teeth.

Minister for Health James Reilly has denied this subsequently. It was all a misunderstanding. But those who provide the services and more importantly those of us who depend on these supports would disagree.

It is also impossible to see where the savings would have been made by pushing already low-paid workers’ personal assistants and home help towards the dole, and forcing disabled and older people towards hospital and residential care. Costs to the exchequer would undoubtedly increase, on top of the denial of people’s liberty to choose how we want live to our lives.

And too many of us know what that is like. Many of those out on the streets overnight spent years as children and young adults in residential care. Others who acquired disabilities such as spinal injuries will know the trauma of lying far too long in hospitals or nursing homes – not because they are sick but because the supports they need to live independently in their home are not available.

The decision to ask for support is never easy. I leave it to the last possible moment or perhaps even later. It’s a question of pride and a skewed notion of what independence means. I somehow think that to be independent I must do everything on my own.

When I can’t, I tend to crumble, become isolated and retreat inwards. This contributes to declining health already impacted by over 30 years using a wheelchair, where muscle and nerve endings are frayed. This results in pain, and then pain relief, which is as debilitating as the pain itself.

I have had the support of a home help for years and, more recently, a personal assistant as my needs and my physical abilities have changed. While my mind is totally hostile to the suggestion of seeking support, my body answers differently.

Rather than being more “dependent” using home helps and personal assistants, the support has given me more freedom, greater choice and much more energy to pursue my goals. I can, after a number of years of poor health, start to rebuild my physical and psychological “wellbeing”, as Government policy documents would describe it.

But too many around the country do not have the same luxury – and many more are still in danger of losing what they have.

Like Michael McKillop and all the wonderful Paralympic voices we have heard from London, the strong activist voices we also heard this week have stood out because we rarely see disabled people telling their stories in print or broadcast media.

It was fascinating to observe journalists so engaged with disabled people’s stories. But should it be that unusual? My sense is that we are still – despite all the goodwill, jargon and rhetoric – not fully comfortable with those of us perceived different when it comes to the human zoo that is our media.

Twenty years ago I presented In from the Margins, a documentary series of television programmes for RTÉ. We looked at various aspects of disabled people’s lives, including the emerging independent living movement.

Disappointingly, this week felt like the Margins revisited. Many of those protesting outside Government Buildings featured in these programmes, telling the story of how the independent living movement flowed from the civil rights movement in the US in the 1960s and 1970s.

In the intervening 20 years, independent living has taken off all around Ireland with varying levels of success and even more varying levels of support from the State. The services provided have not come easy. Many of the same people who were outside Leinster House this week have been campaigning constantly. The fight has never stopped.

Yet despite these efforts, the level of support available to independent living remains paltry when you compare it to the €1.4 billion of the Department of Health’s spend on disability transferred directly to service providers. It’s the way we spend our money that is the real issue.

When defending the cuts, James Reilly talked about Croke Park as the silent elephant in the room. The implication being that if he was able to reopen Croke Park, he would not have to make cuts. However, the real silent elephant in the room, in this instance, is the model of funding for disability services which is channelled through service providers. That is a dysfunctional elephant that has been there for decades before the Croke Park agreement ever existed.

The value-for-money audit on disability services, published in June just before the Dáil went into recess, provides clear evidence (as if it was needed) that the current model of funding is found wanting. This report points to real issues in accountability, transparency and outcomes for money being spent. It’s a pity it didn’t receive the same level of attention by the media as this week’s actions.

Minister of State at the Department of Health Kathleen Lynch did speak at the launch of this report about moving towards a money-following-the-person model. This has been “talked” of for years since as far back as the start of the independent living movement. The Comptroller and Auditor General raised questions about spending and accountability back in 2003.

James Reilly, Róisín Shortall and Kathleen Lynch have all spoken about the need to provide cost-effective solutions that support people in their communities. Critical to this includes primary care and accessible community-based mental health support.

But, a day after Reilly announced a row-back on personal assistants, cuts to mental health and primary care emerged. Cuts when evidence clearly tells us we have a mental health crisis on our hands, coupled with an addiction crisis that is crying out for intervention. These are all mixed signals regarding where we are going. Unjust cutting not only creates human suffering, but carries knock-on costs for the future.

I really do hope the spontaneity of this week’s story is not just a passing phase. Not because I enjoy protests – they literally make me sick due to too much stress and too much adrenaline – but because we need to hear more and see more of the raw authenticity of real disabled people not willing to be ignored.

We also need to start doing the actual reform, instead of attacking that which works.

Donal Toolan is a writer, actor and disability rights campaigner

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