The last 50 years have been a tough but incredible journey for Inclusion Ireland. The vision and pioneering spirit of the founders of NAMHI and the work and commitment of everybody involved with this unique organisation have meant that we have made huge strides in terms of bringing meaning to the term ‘inclusion’.
We have come a long way in the last 50 years. It is hard to imagine what life was like for people with an intellectual disability and their families 50 years ago. It was not a caring or a welcoming world. There was no early childhood intervention, few doctors with an interest in intellectual disability, no obligation on the state to provide education, no opportunity for real work or pay. Choice was between sending a son or daughter to an institution or keeping them at home with little support. The situation has changed today and there have been many gains, but we still have a way to go. People with intellectual disability have higher levels of poverty, more unemployment, experience greater social isolation than their nondisabled peers and these are not a small number of people. Almost 394,000, nearly 8% of the population, described themselves as having a disability in the 2006 census. The 2011 census could raise this number. A recent article by Dr Pauline Conroy in Studies, entitled ‘Disability rights: Justice delayed’, concludes that: ‘Extensive legislation, partially and indifferently implemented, has not delivered the hoped.for rights for people with disabilities on the scale expected. The will to commence and implement legislation has not been present.’
This is certainly true of the Disability Act 2005 and the EPSEN Act 2004, the long delay to replace the 1871 Lunacy Act with modern capacity legislation, and the failure to bring in the necessary legislation for quality standards and independent inspections of all residential services where children and adults with disabilities live. Our continuing failure, after four years, to ratify the UN Convention on the Rights of People with Disabilities is nothing short of a disgrace. We are now one of the last member states of the EU to do so.
We can take some comfort that the new programme for government addresses a number of these issues. Inclusion Ireland calls upon the Ministers with responsibility for these areas: Justice, Disability and Equality, Health, Children and Education (Ministers Shatter, Lynch, O’Reilly, Fitzgerald and Quinn respectively) to do all in their considerable power to make sure that these pieces of legislation are implemented without further delay.
Apart from the legislative programme, there are a lot of other concerns facing us in the coming year. For parents of children with special educational needs there are issues around the capping the number of Special Needs Assistants and the allocation of resource teaching. The continuing lack of an independent appeal structure is also a big problem for parents who wish to appeal the decisions of the Special Education Needs Organisers. School transport is also a major problem. This is the classic example of short-sighted planning and it only postpones the inevitable costs when these young people become adults. Who wins here? No one, not even the taxpayer.
We need to get people out of institutions. The numbers of people with intellectual disability in psychiatric hospitals have come down—but not enough, or fast enough. We need action on this. We need an actual date from government for the closure of all large institutions. The way in which services are funded and delivered must be transformed. As Professor Gerald Quinn of NUI Galway has said: ‘our current system of providing services owes everything to history and nothing to logic.’
The move towards not just Person-centred services, but person-driven services, must be accelerated. We have heard from Báirbre Nic Aongusa, the Director of the Office for Disability and Mental Health, that the need for choice was strongly highlighted by people with disabilities in a consultation exercise by the DOHC. But we have known this since 1993 when the Commission on the Status of People with disabilities travelled the country to consult with people. Recently, I came across a quote by Jim Rohn, who I believe is one of these motivational business gurus, in which he says: ‘If you don’t design your own life plan, chances are you’ll fall into someone else’s plan, and guess what they have planned for you? Not much!’
This is what has happened to people with disabilities in the past and will continue to do, unless there is a change in how we do our business. The Minister for Disability, Kathleen Lynch, and the Director of her Office, Bairbre Nic Aongusa, have indicated this is the way of the future and with rising demographic pressures, higher expectations, reducing resources and a growing demand for transparency and accountability, there can be no argument about this. Our neighbours in the UK have adopted the concept of ‘personalisation’ for all social care groups, and currently a quarter of a million people are in control of their own support.
We in Ireland need a system based on an entitlement, which promotes citizenship, rather than services granted to passive recipients.
Inclusion Ireland wants to bring about change. We want power to change minds and hearts. We want power to change how teachers think and how schools work. How disability services are provided. How employers run their workplaces. We want to shape the new political agenda and bring about effective change. We can rightly celebrate the last fifty years, but we must also reflect on what needs to be done and how we organise ourselves for the next 50 years.
50 years ago it was essential to build up services to support children and adults who had nothing and we were relatively successful in this. Today it can be said that for most people, services and supports— educational and employment opportunities, a place to live and activities in which to participate—are distinctly better than they were 50 years ago. But ‘better than’ is not good enough. Today our vision has expanded to realise the promise of human rights and full inclusion, and to build and develop a movement that can achieve such an agenda. And I know Inclusion Ireland will be an important part of that movement.