Direct payments would transform lives of people with disabilities

This Saturday (June 13th) I’ll be in Athlone, along with several hundred others, at a historic gathering of people with all types of disabilities – the First Assembly, 2015. We are meeting to determine the next major shift needed to achieve real equality and independence for people with disabilities.

Our country has undergone an extraordinary period of social, economic and cultural change. The problem is that the politics and the institutions and the funding models we continue to use to empower and support people with disabilities and their families have a lot of catching up to do.

But, we are optimistic. The time has never been better to make the final push for the status, rights, resources, supports and funding models that can make Ireland the best place to live as a person with a disability.

One of the main reasons for coming together in Athlone is to re-awaken and re-invigorate a new leadership among people with disabilities, especially younger groups. Years of austerity and cutbacks have silenced and weakened us because of the focus we have had to put on just surviving, on fighting to maintain often very basic rights. But change – the critical, momentous, game-changing progress we all need – won’t, and can’t, happen in silence.

Another key proposal on the ambitious agenda in Athlone is that of direct payments. This is the one, very simple idea that can bring about a seismic improvement in the way we support and fund disability services in the future. But more importantly, it is the way that people with disabilities can be empowered to make decisions about the types of lives they want to live – not the type of lives that others think they might want to live.

It would mean the State giving direct cash payments to people with disabilities and their families, if they so choose, so that they themselves can determine the people who can assist them best, and the supports they know will help them live independently and freely.

It’s really about giving people with disabilities the same discretion and flexibility that most people just take for granted in their daily lives. It would allow the mother of a child with learning disabilities buy the extra hours of speech and language therapy she knows he needs, for example. It would mean that a person who wants to go to university could hire a personal assistant that starts work at 7am instead of having to wait for one that starts work at 9.30am, thus missing his morning classes.

This normal choice, this very basic flexibility is something, which remarkably, doesn’t exist for the majority of people with disabilities and their families. At present, services, supports and assistants are allocated based on an assessment of need and then systemic availability and protocols, largely determined by the HSE.

Just imagine if this was the way other State supports or payments were determined: say the Department of Social Protection, for example, told parents how they should allocate their child benefit? There would be uproar.

The evidence for the introduction of direct payments is overwhelming. Nearly one in seven – that's a massive 68 per cent – of people who use disability services in Ireland are not satisfied with the level of control they have over their own lives (2010 Department of Health Report on Public Consultation: Efficiency and Effectiveness of Disability Service in Ireland).

We also know from many other countries across Europe where direct payments are already in existence that they are not only effective and successful but that they are cost efficient. In the UK, as far back as 2005, a Cabinet Office Strategy report called direct payments "the most successful public policy in the area of social care." And we know that they are already working for many people in Ireland, including myself.

I am part of a direct payments demonstration project which has been developed by an organisation called the ÁT Network (Áiseanna Tacaíochta). Moving to direct payments has enabled me to make solid plans for my life for the first time. But I’m a middle-aged man. I shouldn’t have had to wait until now to be able to make solid plans for my life. And I certainly don’t think this is a good enough prospect for other people with disabilities. We desperately need to make direct payments a fundamental choice that all people with disabilities can make now. It’s the only way to go if we are serious about equality, dignity and independent living.

Martin Naughton, disability rights campaigner, is one of the organisers of the First Assembly and is co-founder of the ÁT Network (Áiseanna Tacaíochta). For more information see www.theatnetwork.com