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

I thank Deputy Tully and Sinn Féin for raising this very important matter. The considerable waiting lists for assessment of need and the therapeutic interventions they should lead to form one of the primary barriers faced by children with disabilities and their families. The Ombudsman for Children highlighted this disgraceful position in his 2020 report, Unmet Needs, and I will quote from it. It states:

We have received many complaints from distraught parents whose children have been on a waiting list for years to access an assessment of need for their child. Many have found that once their child is assessed, they struggle to get any or all of the services recommended to help their child talk, move, learn and grow.

We are all aware of this and I know all Members are contacted about this issue weekly. It is a continual topic at the disability matters committee. Our health services are failing children and young people. Not only is this position a breach of their rights but it will have a lasting impact on their capacities across their lives. The earlier an intervention, the more effective it is and the better it is for the individual and society.

The waiting lists for assessment of needs should be of utmost concern to every Member of the Dáil. Assessment of needs is supposed to be the first step in a process providing children with a range of therapeutic and educational supports that they need to live as independently as possible. It is a foundational intervention that has incredibly beneficial impacts on children and young people. A proper wrap-around system of health supports to assist the development of children is one of the most powerful and empowering interventions that we as a society can offer. However, if the first step does not happen, if it is delayed or it is not performed fully, children and the families concerned will have already been failed. It has knock-on effects.

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Delays of months for young children can have profound impacts. Parents know this. They are incredibly worried and stressed. Those who can afford to do so go privately for providers of assessments and therapies. I use the phrase "those who can afford to" cautiously. These are not necessarily wealthy families. They are ordinary people who can manage to save enough money through hard work, sacrifice and borrowing to access services the State should be providing. Then of course there are the families who cannot afford it no matter how much they save or borrow. There are families from migrant backgrounds or in direct provision who cannot navigate the systems nor afford them. There are whole groups of children who are being left behind by successive Governments. No one wants this situation. We all know it is disgraceful, yet it is a daily reality for many families across the country.

A worrying aspect of the situation as noted in the motion is the technicalities being used to work around the requirements to provide full and proper assessment of needs. The duration and content of these assessments should be clinically defined by best international practice. We know that before the introduction of the standard operating procedure, the assessment process took an average of 29 clinical hours to complete. Now it is nowhere near that. A child would be lucky to get even a fraction of that in therapeutic hours in west Cork, not to mind an assessment of that calibre. It would seem that the administrative targets are being given priority here. Children's assessments and treatments should only be decided on the basis of best clinical practice. Unfortunately this situation sums up reality for so many children and adults with disabilities in Ireland. Disability rights are in name only. The rights to healthcare and education are being failed daily.

I am in contact with numerous families in Cork South-West and beyond who have to fight to get access to therapies and learning support. Families have to travel hours to get occupational therapy or speech and language therapy appointments. They have to wait around for cancellations of those appointments even, and fund-raise for special needs assistants. They have to rely on community supports and donations to get suitable vehicles. Despite Ireland eventually having ratified the UN Convention on the Rights of Persons with Disabilities, there is a massive gap between the law and the lived reality of individuals and their families.

The motion calls for immediate ratification of the optional protocol to the convention. I have been pushing for this repeatedly at the Oireachtas Joint Committee on Disability Matters and in this House. The protocol is an essential mechanism to hold the State and State bodies to account in the provision of services. The consistent and persistent failure to realise the UN convention points to the glaring need for the protocol. Sinéad Gibney, the chief commissioner in the Irish Human Rights and Equality Commission, stated:

'Optional Protocol' is a technical term that unfortunately does a disservice to its meaning and significance, and which masks the urgent need for action for people with disabilities and our society. The Protocol is about empowering people with disabilities.

While the language is technical and it can seem divorced from everyday life, this is an incredibly important thing to help strengthen the rights of people with disabilities. Far from being optional, it is a vital measure relating to implementing the convention. It provides more local remedies and removes discriminatory laws and practices.

At the Oireachtas Joint Committee on Disability Matters, experts including the UN Special Rapporteur on Disabilities and the Irish Human Rights and Equality Commission have clearly said that the optional protocol can be ratified immediately. It is a political decision. The Government can ratify it tomorrow if it chooses. Currently it seems there is an institutional aversion to the protocol as a tool to hold the State to account. It took over ten years for us to ratify the UN Convention on the Rights of Persons with Disabilities. Individuals, communities and advocacy organisations are deeply concerned that ratification of the protocol is also years away.

Ireland is supposed to have a social model of disability, an approach which recognises how individuals are disabled by society, for example, by barriers put in place such as inaccessible buildings, needlessly complicated forms and a lack of Irish Sign Language services. However, the State still seems to have a medicalised model of disability that defines these areas in terms of physiology. The primary medical certificate is a prominent example of this. The use of medical certificates and stringent criteria is not only antiquated, it is actively obstructing the independence and rights of disabled people. We need a system that is less concerned with exact medical and physiological issues and more with the individuals and how they can be empowered to live as independent a life as possible. We all know of cases where families have to fund-raise for adapted cars and vans for young children with disabilities. The State is failing these children and adults who are just looking for a fair shot at being able to get an adapted vehicle. Until the cultural understanding of disability is changed within all Departments and State bodies, these barriers will remain. Disabled people will still be failed and we will still have to fight for basic services.

Before Christmas, the Oireachtas Joint Committee on Disability Matters heard from a family who had moved from Australia to Ireland. In Australia, their child received two hours of occupational therapy, one hour of physiotherapy, one hour of speech and language therapy and one hour of vision therapy every week with an extra intensive therapy period every three months. The family moved to Galway. Their daughter received considerably less but still got early intervention including regular physiotherapy, hydrotherapy, occupational therapy, speech and language therapy and even family respite. The family then moved to Cork and the level of service plummeted. Like many other families they have had to pay privately for physiotherapy, occupational therapy, speech and language therapy and for carers because none of those services were available publicly in Cork. Not only is Ireland providing significantly less support to children than other countries; there is a massive variation in services within Ireland. It is literally a postcode lottery. This is a terrifying reality for families in Ireland. The motion outlines vital actions to realise the rights of children and provide them with the care they need. It is essential that this motion is passed and, crucially, acted on by Government.

I have 50 seconds left. One of the issues I raised last week with the Minister for Education, the Minister of State with responsibility for special education, the Taoiseach, the National Council for Special Education, NCSE, and so on was in respect of our early intervention classes. It was flagged that the NCSE had told a school in Cork South-West that its early intervention class was to close, that this was the national policy and that the classes would be phased out in favour of the access and inclusion model. When I raised it with the NCSE it was very evasive and that made me more worried. When I raised it with the Minister for Education she did not answer the question. When I raised it with the Taoiseach who, to be fair, cannot know every single thing that is going on in every Department, he seemed sure that would not happen. When I raised it with the Minister of State with responsibility for special education at the committee, she said it would not happen.

Based on all the previous things before that, I want to flag it again with the Minister of State, Deputy Rabbitte. The access and inclusion model is not suitable for many children who go into our early intervention classes. We obviously need more of them based on the waiting lists. One of the things the NCSE and all those Ministers were saying was that it was a matter of providing them where they are needed but in that case it was needed. There were staff in place, students enrolled and a waiting list but they were taking it away. That decision has been reversed which is welcome. I want to flag it with the Minister of State to ensure it cannot happen anywhere else.

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