Services for People with Disabilities – Motion

25th January 2012

I welcome John Dolan from the Disability Federation of Ireland, who is joining us tonight, as well as the aforementioned people. I would like to focus in my statement on what I believe are three fundamental failings in the provision of disability support services. One is that there are currently no independent inspections; the second is that the €1.5 billion of health budget that is spent on disability services is allocated to service providers rather than individuals; and the third is Ireland’s current capacity laws, which date back to 1871. Each of these is totally unacceptable and leads one to question what we have learned from our egregious failings towards vulnerable groups in State care in the past.

We can all agree that the only way to ensure we never repeat our past failings is to understand why they happened and for current and future policy to embrace what we learned. This is exactly what the recent Amnesty International report, In Plain Sight, responding to the Ferns, Ryan, Murphy and Cloyne reports, sought to achieve. Its aim was encapsulated by its executive director, Colm O’Gorman, when he said “The past only becomes history once we have addressed it, learnt from it and made the changes necessary to ensure that we do not repeat mistakes and wrongdoing.” In fact, the report identified a number of causal and contributory factors to the institutional abuse of children in State and church-run institutions, which unfortunately I see as being equally valid in today’s debate: the absence of a voice, the absence of statutory inspections, deference, and the failure of the State to operate on behalf of the people and not interest groups. While the debate we are having is in the context of disability supports and services, it is not really about disability – it is about justice, equality and human rights for all of our citizens.

With regard to the regulation and inspection of disability services, recommendation 11 of the Ryan report implementation plan states that independent inspections are essential. I will quote from the implementation plan, but I will take the liberty of substituting the word “children” with “people with disabilities”.
All services for [people with disabilities] should be subject to regular inspections in respect of all aspects of their care. The requirements of a system of inspection include the following:

– There is a sufficient number of inspectors.
– The inspectors must be independent.
– There should be objective national standards for inspection of all settings where [people with disabilities] are placed.
– Unannounced inspection should take place.
– Complaints to an inspector should be recorded and followed up.
– Inspectors should have power to ensure that inadequate standards are addressed without delay.

We are all aware of the commitment in the programme for Government, which we welcome, to put the draft national standards on a statutory footing. In fact, the second progress report on the Ryan report implementation plan, which was published last year, notes that a new target date of the fourth quarter of 2012 has been set. The report also notes that the commencement of the Health Act 2007 by the Department of Children and Youth Affairs to allow the independent registration and inspection of all residential centres and respite services for children with disabilities is contingent on the aforementioned action being taken. We still have not learned from our past and we still do not have the required systems in place. When will the Minister be in a position to give the necessary mandate and legal power to HIQA to inspect the centres?

In my research I was appalled to find that there has been no official audit of the number and location of centres, so we actually do not know where all the centres are and who is running them. I hope the Minister of State can show me evidence that this is not right. I also ask the Minister of State to explain why interim measures such as instructing the HSE and social services inspectorate to commence inspections of centres where children or those with disabilities live have not been put in place until an inspection regime is operational.
The second issue I want to discuss is the individual resource allocation system. Everyone agrees that we need to provide an individualised budget. We have spoken in the past about deference to the State and the church, but what about the deference that people in receipt of disability services are forced to pay to the HSE and service providers in circumstances in which they are unable to question or provide any input into the services they receive, where they receive them or who provides them? I have heard of cases in which an individual has chosen not to avail of a service, yet the State makes payments to the service provider, so the State is paying for a service that is not being accessed. It does not make sense. As the system currently operates, it seems that people with disabilities are expected to feel lucky and grateful for the supports and services they receive. The supports and services are provided by the State because we value all of our citizens. We recognise that we have different needs at different stages of our lives, and our system should reflect this.

We are all aware of and welcome the commitment in the programme for Government to introduce modern capacity legislation. I will not rehearse what has already been said, but I will give a quote from one of our briefings which clearly shows why the law is so archaic. Frieda Finlay, the chairperson of Inclusion Ireland, described the situation of herself and her daughter. She said: “As the parent of a 38 year old woman with an intellectual disability, who is a citizen by birth of an independent sovereign republic, I burn with anger every day at the thought that her capacity to make basic decisions about her life is governed by an Act signed into law by Queen Victoria and brought in by Gladstone’s Government 140 years ago.” The failure to repeal this law flies in the face of Ireland’s commitment to the right of all people in Ireland to live with dignity and exercise self-determination.

In conclusion, we all know what needs to be done. What we do not need is more reports; we do not even need more debates. We do not need pilot projects or think tanks. We need action and implementation. That is the reason for my disappointment that amendments have been tabled by both the Government and Sinn Féin. I urge my colleagues not to push them to a vote. The original motion that was tabled should be a catalyst for change. Let us show this to be a Seanad motion. It does not have to be an Independent Group motion. Let us collect around this motion and make it a Seanad motion, and let us show a strong sign of unity. That is what I urge my colleagues to do.

The Lancet

In July 2021, Jillian co-authored an article in the world-renowned medical journal “The Lancet”