Three years ago, I left my advocacy job with Inclusion Ireland to take up a post in workers’ training and education. It was a bit of a wrench, as I had spent over twenty years of my life working in services for people with an intellectual disability. I was fortunate to have worked with many inspiring self-advocates, amazing families and great colleagues, so I was sad to leave. I left, however, hopeful that things were getting better—there were still big mountains to climb but in economic, legislative, social and political terms, people with an intellectual disability and their families were beginning to see some change—slow change, but change none the less. Years of struggling and decades of exclusion were being challenged with energy and vigour.
We had a minister of state for disability who seemed genuinely engaged with and in control of his brief, a range of lobbying and representative groups that were both media and politically savvy and the beginning of a legislative framework that would finally see legal recognition of all the rights long sought after.
A couple of days before I left I attended a meeting in the (then) Department of Enterprise, Trade and Employment (DETE) with service user representatives, senior civil servants, service providers and representatives of the social partners. The purpose? To find meaningful and effective ways to get people with a disability into the workforce. I came away from that meeting thinking ‘this is not just the “usual auld guff”, it looks like a real attempt to open up the labour market.’
The following Friday I finished my work with Inclusion Ireland and headed off to my new job.
So! Three years and lots of adventures later, I’m back! In a part time capacity, but still interested, still engaged. And what do I find? Well, let’s do this by the numbers:
(1) Disability Act 2005—Part Two of the Act provided for an assessment of need for children under five. This commenced in 2007. The next part of the rollout of the act—assessment of need for children between the ages of five and eighteen has been postponed indefinitely. Why?
(2) Education for Persons with Special Educational Needs (EPSEN) Act 2004. In 2008 it was announced that the full rollout of EPSEN would be halted indefinitely for ‘financial reasons’, a hard pill to swallow when measured against ministerial salaries, perks, pensions and ‘goodbye money’.
(3) The Ryan Report 2009 detailed abuses against children with disabilities. It strongly recommended independent, objective inspections of all settings where children are placed—so where are the mandatory national objective standards and the statutory inspections?
(4) Citizens Information Act 2007 set out the development of a Personal Advocacy Service (PAS)—this would have given statutory powers to advocates for people with a disability to visit services and request information where necessary.
PAS was withdrawn, the then minister announcing that it would be introduced ‘at a more appropriate time’. When will that be, I wonder?
(5) Capacity legislation and the UN Convention on the Rights of Persons with a Disability. We have signed on for this, but we have not ratified the UN Convention on the Rights of Persons with a Disability. We have been told that this cannot happen until proper capacity legislation has been enacted, and this has still not happened. Why?
(6) Congregated settings. Everyone agrees that congregated settings have not and do not serve our citizens with an intellectual disability well and yet we still have them. Why?
(7) Statutory Standards and Inspection of Disability Services—We now have a voluntary set of standards with no systematic, statutory and regular inspections. Why?
Do you see a pattern emerging here?
In the interest of balance, it is fair to say that this time period has also seen the development of many progressive and energetic advocacy groups, parent and family organisations that know how to lobby and organise for decent Person-centred services, service providers who understand that their role is to serve their customer (sadly some never have and never will), and the growing acknowledgement that person-centredness within a rights-based approach to service development and service delivery is the best and only way to go.
Despite that list of positives, it still looks to me as though life for people with an intellectual disability and their families is as hard now as at any other time during the last twenty years. And this is after a decade and a half of unparalleled prosperity. The dreadful truth is that while we throw billion after billions of euro into shabby, broken banks, services to our citizens with an intellectual disability and their families are being reduced in what sometimes appears to be a spurious and haphazard manner. People with an intellectual disability their families, carers and services have been ‘doing more with less’ long before it became the trite soundbyte so beloved of many of our elected representatives. It seems they will now have to do ‘even more with even less’.
It gives me no pleasure to paint this grim picture, but I paint what I see. We have seen a lot of the great work of the last twenty years broken and undone, gains either eroded or snatched away and a diminution of services that is appalling to behold, and the working group based in DETE?—the one that was tasked with finding meaningful and effective ways to support people with a disability in to the workforce. We are still waiting for a national employment strategy.
Some days it feels like I have never been away.