Holly Cairns (Cork South West, Social Democrats) | Oireachtas source

The stand-in chairperson’s forward to our pre-budget submission notes that a key measure to aid translation of the UNCRPD into law is ensuring that adequate funding is allocated in the national budget, while the UN human rights document, Realizing the Rights of Persons with Disabilities, a handbook for parliamentarians, identifies budgetary measures as being central to realising the rights of people with disabilities. The Oireachtas has an obligation to ensure that appropriate funding is assigned to the different sectors that provide services and supports, and this point cannot be overstated. Proper funding is necessary for individuals to realise their rights under the UNCRPD. Without this, the State is knowingly failing people, families and entire communities.

Despite signing up to the convention, we have a considerable way to go for it to be a reality in the lives of people with disabilities. If we accept the testimony from witnesses to the committee, we have to conclude that Ireland has a budget-based approach to disabilities, not a rights-based approach. One of the clearest examples of this is special needs education. We have many children and young people who are entitled to SNA resource hours but do not get them because they are not available. This is a budgetary decision, not a rights-based one. Over the past two months, I have been working with national schools across Cork South-West and I am sure all Deputies have done the same in their constituencies. In Schull, Ballydehob, Dreeny and Rosscarbery, which are entitled to SNAs and resource hours, they have not been allocated. If an individual meets the criteria, they should automatically get the support they are entitled to; that is the measure of a rights-based approach.

Perhaps I am being naive but it is the system that we need to change. In the meantime, we should have the decency to admit that, despite what Departments and even Ministers say, we do not have a rights-based approach, and that is just the reality at the moment. The first step in solving any problem is recognising that there is one.

At the committee's meetings each week we hear examples of State failures, apathy and even hostility towards people with disabilities and their families, who have to fight and fight for access to home care, equipment, transport, housing, education and the chance to live independently - you name it. Recently, Samantha Kenny, a family carer and parent to a six-year-old girl with a rare genetic disorder, two boys, aged 10 and 14, who are autistic, and a 15-year-old boy who has no diagnosis, described to us the struggle to access services. She said:

As a parent and full-time family carer, the past eight years have been extremely eye-opening. I have come across obstacles I never dreamed of and genuinely, the fight to not only obtain support but to also keep it has been absolutely exhausting.

She explained how they had to rely on family for a suitable home, having to constantly save to adapt their home, and fundraising for a wheelchair-accessible van.

Also appearing that day was Damien O’Reilly, who has a physical disability, cerebral palsy, due to a lack of oxygen at birth. He provided an account of having to argue and work tirelessly to access supports for independent living. He could not go to college initially because of lack of support. He had to negotiate with the HSE just to get half the hours of personal assistance he required and, now, he trains his own personal assistants, PAs.

There are over 1,000 people under 65 years of age who are forced into nursing homes because we do not have the supported living settings for them to live with their peers in the community. In response to the Ombudsman’s report, Wasted Lives - Time for a better future for younger people in nursing homes, the HSE committed to transitioning 18 people under 65 from nursing homes. That is 18 out of at least 1,300, which is less than 2%.

I know it is really complex area, spread across different Departments and agencies but, ultimately, money is such a major factor. The convention is the standard we have signed up to and that is the standard we need to reach. Furthermore, this need is understood and has been qualified. The Department of Health's report on unmet needs identified the funding required, €350 million. Despite increases this year, there is still a deficit of €300 million that is required for next year. That is the report we have access to, which is thanks to the work of advocates and, I suspect, thanks to the work of the Minister of State, Deputy Rabbitte. The Department of Social Protection’s cost of disability report has been with that Department for months and remains unpublished, despite requests from campaigners, NGOs Deputies and, I presume, all parties. However, what we know is that, on average, EU countries spend 2% of their GDP on social protection expenditure for disability. Ireland's expenditure is just 0.8%, the second lowest in the EU. No wonder the consistent poverty rate for people with disabilities has risen from 9% in 2009 to 24% in 2017.

The committee submission also notes that the optional protocol to the UNCRPD must be ratified urgently to ensure complaints can be submitted directly to the UN committee by individuals if they feel their rights have been violated under the UNCRPD. The optional protocol is a vital tool to enable people to enforce the rights acknowledged in the convention. I firmly believe it will make a significant difference in holding the State accountable for the deficiencies in services and the barriers individuals face. We have heard from different experts, including the Irish Human Rights and Equality Commission, which clearly stated the optional protocol can be ratified at any point - they said it could be ratified tomorrow - and that the timing is entirely at the discretion of the Government. The UN special rapporteur on disabilities said the same. However, the Government, following the lead of the Department of Children, Equality, Disability, Integration and Youth, argues that we must review current mechanisms and fully commence the Assisted Decision-Making (Capacity) Act 2015. This is despite the fact many other states have ratified the optional protocol first and then put in place the infrastructure. It is an important step to increase awareness of disability rights that will hasten the necessary changes.

I am going to continue to push for this. Unfortunately, to date, all I have been met with is brick walls. I hope the rest of the committee will continue to push in the same way. Disgracefully, it took Ireland more than ten years to ratify the UNCRPD. We cannot wait that long again for people to be able to guarantee their rights. Ensuring the rights of people with disabilities are fully realised is a matter of resolve; it is about matching policy and rhetoric. At the end of the day, it is about Government priorities.

I have to point out my disappointment that neither the Minister for Finance nor the Minister for Public Expenditure and Reform are present. Until those Ministers and respective Departments understand and take these issues with the seriousness they deserve, individuals, families and whole communities will continue to face the barriers which we hear about every single week in our committee. None of us can doubt the commitment of the Minister of State, Deputy Rabbitte, to disability matters, but she can only work with what she is given. Unfortunately, this relates to a larger trend where Cabinet Ministers have not appeared before the committee, despite our requests. The Minister for Housing, Local Government and Heritage and the Minister for Health could not make time to attend. The Ministers of State in those Departments, including Deputy Rabbitte, and the Minister for Children, Equality, Disability, Integration and Youth, have appeared and engaged genuinely with us, and they are both here today.

The scale of failures and barriers we hear about and the suffering the State imposes on these individuals and their families deserve proper attention.

If carers and people with disabilities are willing to give up their valuable time to appear before us in committee meetings, the least they should expect from the relevant Cabinet Ministers is for them to attend the same meetings and the likes of this sitting. For this document or for the committee to mean anything, we need a seismic shift in the budgetary response to disability. It is as much an issue for the Department of Housing, Local Government and Heritage and the Department of Public Expenditure and Reform as it is for the Department of Health and the Department of Children, Equality, Disability, Integration and Youth. Unless we push for this with all of our individual and collective capacity for change, we are failing the people who appear before us every week. They put significant effort and emotion into telling their stories to officials again and again and we are obliged to ensure this is not done in vain.

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