I am delighted to speak on the motion. The Minister of State will be aware that there has been a long struggle by constituents in Dublin Bay North for the recognition of a personal assistance service, supported by the appropriate funding. He will recall, as I do, Mr. Martin Naughton of Connemara and Baldoyle and his lifelong campaign for disability rights. He did groundbreaking work with Áiseanna Tacaíochta, the Irish Wheelchair Association, IWA, and the Muscular Dystrophy Association, MDA. He was integral to the establishment of the first centre for independent living in Ireland and was involved in the DFI. Sadly, he died in October 2016 aged just 62. I had the pleasure of meeting him at the North Dublin Disability Forum event on 29 of March 2016, some months before his death. Martin’s struggle goes on. Tonight we are renewing his campaign and asking for definitive steps to be taken to ensure that this service is provided to all of our citizens with disabilities. The fight is continued now by excellent advocates such as Ms Shelly Gaynor, Mr. James Cawley, Ms Joan Carthy, the IWA, ILMI, DFI and others. Members may have read James Cawley’s opinion piece in The Journal last Saturday where he spoke about personal assistance being the “difference between existing and living”.
Personal assistants are not carers and the service should not be conflated with home help or care providers. People with disabilities who are in receipt of the personal assistance service have described in informative and moving briefings in the audiovisual room on Leinster House how their personal assistants are their “limbs”. Their personal assistants are there to assist them with everyday things such as household chores, travel, work and parenting. They assist them in living their lives which must be the ultimate objective. Sadly, on this Government’s watch, only 1.6 million personal assistance hours were delivered to 2,535 people in 2018 and 1.5 million hours were delivered to 2,470 people in 2017. HSE data on the 2017 figures show that 85% of the people in receipt of a personal assistance service on average received under three hours per day, with 45%% only receiving on average 42 minutes per day. The Minister of State has delivered 42 minutes per day. That is the reality of his record in the Department of Health. Is it fair that some citizens in Ireland are only allowed have use of their “limbs” for 42 minutes per day? It is atrocious to think that people who want this service are not receiving enough time each day for it to make a material difference to their lives, allowing them to work, study, train or raise a family, to use computers and to contribute to our society.
Our motion calls on the Government to closely consult citizens with disabilities and the disability advocacy organisations on policy development as outlined in Article 4.3 of the UNCRPD, which we ratified in March of 2018. The convention states: “States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.” We are asking the Government to engage with the review being undertaken of the National Disability Inclusion Strategy 2017-2021. Actions No. 69 to 71, inclusive, of the strategy relate to independent living and the aim of achieving “maximum independence” for disabled people in Ireland. The Minister of State has a deep interest in this issue and every time we have an opportunity to discuss it, I ask him to ensure that the Government signs and implements the optional protocol of the UNCRPD to commit to expenditure on disability services like personal assistance. This is something that many of us on these benches have been calling for since ratification of the convention. Without the right to complain about the lack of services and, therefore, have the Government do something about it, the ratification of the convention was nothing more than a public relations exercise. The Government is not delivering.
In essence, our motion recognises that we desperately need a commissioner for independent living to be established within the Department of Social Protection who is tasked with consulting advocacy organisations to define a personal assistance service in Ireland. That commissioner should also be tasked with facilitating the separation of the personal assistance service from home help; establishing a roadmap towards the provision of ring-fenced funding for personal assistance services; introducing a single standard assessment of need across all HSE CHO areas; and ensuring that any new legislation or Government policy on independent living conveys the right to access a personal assistance service in this country so that disabled people have choice, control and freedom to participate in society as equals.
I was informed by the Minister of State on 15 January 2019 that no additional funding was provided in budget 2019 for personal assistant hours. However, he also said that the HSE’s national service plan aims to provide 1.63 million hours of personal assistance to almost 2,500 people. It was amazing to learn that the HSE was going to magically provide 170,000 more personal assistance hours even though the Minister of State did not ensure, during pre-budget discussions, that more funding would be provided for personal assistance services. It was the outstanding Ms Joan Carthy, advocacy officer with the IWA who brought this anomaly to my attention following the announcement of budget 2019 and we set about trying to get some answers from the Department and the HSE. The statistics on the number of personal assistance hours provided since 2013 are disappointing, given the number of people in need of the service. Dr. Cathal Morgan has replied to me directly in response to various parliamentary questions submitted to the Department of Health. In one such reply he said “the level of service delivered is varied to ensure that each client’s needs are reflected .. there is no average agreed number of PA hours per person”. However, he went on to say that “it is recognised that many would benefit from more support hours”. That has to be one of the understatements of the century. In a different reply, Dr. Morgan confirmed that sometimes hours will be taken away from one person to provide hours to another person because the resources for the personal assistance service are “finite”. That is a very important but disappointing word and is key to how this Government operates in the context of disability services. Research as far back as 1996 showed that an average of ten hours per week would only respond to personal care needs and not to improving quality of life or full participation in society.
The Minister of State said in response to a parliamentary question that the personal assistance service provided by the HSE adheres to the principles laid out in Article 19 of the UNCRPD. Disappointingly, he ended his reply by saying that he had “no plans for legislation governing the rights, entitlements and operations associated with this service”. Has he not read the excellent literature and evidence-based research provided by the advocacy groups? ILMI has worked with the Centre for Disability Law and Policy in NUI Galway on extensive research around international best practice on this matter.
The research examined four options to achieve a right to personal assistance in Ireland, including stand-alone legislation; a comprehensive right to community care and support; legislation for personalised budgets; and the commencement of the Disability Act 2005. The overall recommendation was to follow Sweden, as Deputy Pringle has said, as an exemplar of personal assistance services in Europe and the world, and to introduce stand-alone legislation. The research also stated significant work on eligibility, scope, access and use would need to be completed to ensure the legislation was fit for purpose, fully inclusive and accessible and not just another set of promises that have not been delivered on.
I did not get a chance to talk about the opportunities for work and education for citizens with a disability but it is disappointing when one looks at statistics that, for example, in the country reports, Ireland has one of the lowest rates of employment for people with a disability in the EU and one of the highest rates of poverty for citizens with a disability. This is all, unfortunately, happening on the Minister of State’s watch.
I welcome Fianna Fáil’s support for our motion and I thank Ms Jodie Neary, a parliamentary assistant in Deputy Pringle’s office, for the outstanding work she has done on it. I look forward to the debate, I hope we can move forward on this important equality and human rights issue, and I hope a properly resourced personal assistance service will be a core pillar of Ireland’s social policy as we move into the future.