Time for an end to exclusion Ireland

 

Inclusion Ireland is gearing up to fight legislation, and mindsets, that exclude those with intellectual disabilities from society

WHEN INCLUSION Ireland was founded 50 years ago, services to support children and adults with an intellectual disability were practically non-existent in this country.

Since then, there have been major improvements in the provision of services and supports in education, employment and accommodation for this sector of society.

Yet the reality today, according to Deirdre Carroll, chief executive of Inclusion Ireland – the national association for people with an intellectual disability – is that the majority of those it represents still live in segregated settings and more than 90 per cent have no jobs.

While Ireland is beginning to follow the European “community living” movement, Ms Carroll pointed out that certain legislative changes still needed to be made, and a great deal of work needed to be done on “changing hearts and minds”.

“Fifty years ago, it was essential to build up services to support children and adults who had nothing – and we were relatively successful in doing this,” she said. “Most of the services and supports in education, employment opportunities, accommodation and activities are distinctly better than [they were] 50 years ago. But I would say better is not enough.”

Speaking at the 50th anniversary AGM and annual conference of Inclusion Ireland in Galway at the weekend, Ms Carroll said the group’s vision had expanded into the promotion of the human rights of those it represented.

“The current economic situation is similar to [that of] 50 years ago when we started out. There’s not a lot of money around. We realise our current way of providing services is quite costly.

“We need to examine where the money is going and how we can provide better, more community inclusive services at better value, and give people with intellectual disabilities what they want – which is more choice and control over their own destinies.”

Ms Carroll pointed out that Ireland was still operating under the 1971 Lunacy Act, which was a huge barrier to allowing people with intellectual disabilities to live in the community.

Professor of developmental disabilities at the University of Ulster, Roy McConkey, said Inclusion Ireland had played a major role in alerting communities to the fact that people with intellectual disabilities could play a part in society. He said this journey needed to continue.

He outlined the need for Irish society to move away from being ashamed about disability to taking pride in people; away from a segregated campus mentality to openness and much more inclusive services; from a charity perspective to a rights perspective.

Prof McConkey pointed to the need to move towards “ordinary living”, so that people with intellectual disability could live in their own houses and have a choice who they lived with.

“We should celebrate what has been achieved, but there are still some very significant challenges ahead,” he said. “Much of what we are talking about is a change of mindset, rather than needing lots of extra money to bring about changes. For 20 or 30 years of the existence of Inclusion Ireland, this country was a pretty poor place to be and their journey was being made against a background of very few resources. If they did it once, they can do it again.”

Meanwhile, economist Jim Power highlighted the challenge of providing disability services in today’s changed economic setting. He pointed out that the HSE spent €1.6 billion per annum in the area of disability – 75 per cent, or about €1.2 billion, of this through the non-profit sector.

“There are obviously going to be serious pressures on public spending going forward,” he said. “As a consequence spending on disability, as in every other area, will be subject to much more intense scrutiny. What is essential is to ensure firstly that the best quality service is provided to customers – people with disability – and secondly that the taxpayer gets value for money. I think the structures in place today provide neither.”

Mr Power said the non-profit providers of services to people with disabilities must be subject to much greater scrutiny and professional standards.

“I get the distinct impression that professionalism is not as strong as it should be, given that we’re talking about €1.2 billion of taxpayers’ money,” he said.

“The report of the Comptroller and Auditor General in 2005, and again in 2010, showed clearly that a lot of these service providers are not complying with what one would term normal business practice in terms of providing audited accounts and reconciliation of expenditure and income.”

Mr Power said he did not think this situation would be acceptable in the future.

The ultimate objective, he stated, was to provide the person with disability with the best service possible, and it was not clear to him from the research he had seen that needs assessments were being properly carried out.