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

I want to start by thanking Deputy Tully for enabling this important discussion. Disabled people and their families only ever want what they are entitled to. In briefings by disabled persons' organisations, in meetings with distressed and frustrated parents and in all the reports from organisations, they say they just need proper services. They are not looking for anything exorbitant of for special treatment; they are just looking for what they deserve and are fighting for their rights.

Disabled people have the right to live as independent a life as possible, to suitable housing, to accessible public transport and to employment. Children have the right to be seen by medical professionals and therapists in a timely manner and they have the right to education. These are all rights; the fundamental services people are entitled to. However, we all know that every day, these rights are breached. Obstacles to access work, delays in seeing a clinical therapist and inaccessible public transport are breaches. These breaches are so commonplace and everyday that they are not even noted.

It is only after repeated failures and frustrations that individuals and families contact their public representatives and it is only egregious cases that make it into the newspapers. This is wrong on every level and people should not have to go these lengths. Disabled people and their families should not have to share intimate details to get services. Unfortunately the media has a particular role to play here as stories around disability services only make it to the headlines when someone is willing to, or is convinced, to tell their personal story. Recently, Catherine Gallagher shared her details nationally to retain and access supports for studying her PhD. She spoke at the Committee on Disability Matters about disabled people often not having the privilege of living with privacy, dignity and discretion. Until our systems are designed and operate off a rights-based approach, people like Catherine will continue to have to jump through hoops and go to the newspapers. The failure to provide people with services has knock-on effects impacting on: their quality of life; their potential throughout life; their family; and how society understands disability.

The key point underlying this motion is that disability services are a right. They are not optional services or some kind of charity; they are the basic support the State is obliged to provide to individuals.

The progressing disability services, PDS, programme is one of the key examples of this larger issue. It is currently a failure, with overwhelming evidence it is failing children and families, breaching their rights and not providing therapies when they are most needed and most effective. We are all aware of individual cases that represent the severe lack of services. Down Syndrome Ireland, AsIAm, Inclusion Ireland and others have produced comprehensive reports showing the overall situation, from glaring regional variations to no therapists for more than a year and a complete absence of any communication. Families Unite for Services and Support, FUSS, Ireland is doing incredible work highlighting how children and young adults with disabilities in Ireland face long waiting lists and, in many cases, a lack of supports. It holds regular protests and is active on social media, which it should not have to be. Each of its protests and meetings symbolises the failure of our current system.

The lack of communication and accountability is a major concern. Family forums were supposed to be an important pillar of the PDS programme. As families wait for many of the forums to be established, they have formed their own networks and have tried to engage proactively with disability services management in community healthcare organisations, CHOs. They have had very little engagement. It is, in essence, impossible to meet with management in CHO 4.

Children's disability network teams are not fully staffed. This is a self-perpetuating issue as under-resourced teams lead to overstretched staff who feel they are not providing the care they want to and are being ethically compromised by the limited time they can give children. They then migrate to other countries or go into private practice just to be able to do the jobs they are supposed to do. Related to this is how student therapists are treated, with many receiving no remuneration for their internship or placement work. If we want to retain these professionals as graduates, they must be respected from day one.

Another group that demonstrates the desperate state of disability services is the more than 1,300 people aged under 65 forced into nursing homes because the State cannot support them in community settings. These are individuals with certain clinical needs who are capable, if supported, of living independently. Instead, they are being institutionalised in nursing homes, spending their days with people 30 or 40 years older and knowing that under current rates of decongregation, they will never leave those homes. The Ombudsman's report last year, entitled Wasted Lives: Time for a better future for younger people in nursing homes, charts the scale and impact of this issue. In his foreword, the then Ombudsman, Peter Tyndall, wrote:

Once you start unpicking the issues, it is clear that the systems are not in place to support people with disabilities. There is no system to ensure that every person has a key worker to enable them to access services. There is no consistent process for establishing people's needs and preferences. As a consequence, there is no way of identifying overall requirements, and no planning to address them.

Clinical evidence and findings from HIQA show life is better for people not living in larger settings. We need clear plans to move these 1,300-plus people out of nursing homes.

Another vital service is personal assistance. Along with supported independent living, it is a major tool in helping individuals to realise their rights. There is a significant gap in demand versus supply in personal assistance services. This has knock-on effects as a lack of access is a barrier to independent living, education and employment. Independent Living Movement Ireland, ILMI, describes how the process to apply for personal assistance can be daunting and complicated and many disabled people are told they cannot get the hours they need. Increased funding for personal assistance would be transformative for individuals and their families but it also would be an economic and social investment as it would enable whole cohorts of people to enter education and employment and live in their community. I recently attended the awards ceremony of the National Learning Network in Bantry, which demonstrated that providing the right supports, such as training, transport and work placements, results in incredible success. Last year, 92% of its students progressed either to part-time or full-time employment or further education and training. That is a remarkable rate that rivals those of our best universities.

The Convention on the Rights of Persons with Disabilities, CRPD, clearly outlines the importance of mechanisms for disabled people to shape policy that impacts on their lives. Our legislative and consultative processes are hostile to participation by the larger public, never mind individuals with additional needs or overstretched families. Improvements in services must be guided by the people directly affected. There is a glaring need for more investment in disabled people's organisations, DPOs, and advocacy services. We have a small network of DPOs that are helping to transform how we understand disability and policy. However, they have limited capacities and require proper funding streams from the Government that guarantee their operations and independence. The national advocacy service, NAS, for people with disabilities, funded through the citizens information network, is a vital service for helping to represent the rights and preferences of disabled people. It is vastly oversubscribed, however, which needs to be recognised by both the Government and the Citizens Information Board. We are obliged to provide individuals and groups with the tools to advocate for themselves and influence decision-making.

The motion rightly highlights the continued failure of the Government to publish the disability capacity review action plan. My motion on the cost of disability back in early July included a call for the publishing of that report. The Minister of State, Deputy Rabbitte, informed the Dáil at the time that she had signed off on the report and it was with the Minister, Deputy Stephen Donnelly. She assured us we were "within weeks of having it published". Months later, after the budget, disabled people are still waiting for the action plan. The disability capacity review was published in July 2021. Now, in October 2022, there is still no sign of the action plan. How many more motions will it take for it to be published?

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