Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein) | Oireachtas source

I move:

That Dáil Éireann:notes that:

— there were 643,131 people, 13.5 per cent of the population, who indicated that they had a disability in Census 2016, which represented an increase of 47,796 people between 2011 and 2016;

— up to one in ten persons below 45 years of age has a disability, rising to 20 per cent by age 60, and rates increase sharply above age 70;

— educational attainment amongst disabled persons is much lower than that of the general population at all levels;

— the unemployment rate amongst persons with a disability was 26.3 per cent, more than double the then 12.9 per cent rate for the population as a whole;

— the potential loss of the medical card is an immensely significant barrier preventing people with disabilities and chronic illness entering employment;

— the Central Statistics Office's (CSO) Survey on Income and Living Conditions published in February, 2017, showed that while overall general poverty rates in Ireland are showing some improvements, they are getting worse for people who live with a disability, and it found that 53 per cent of people who are not in work due to a disability or illness are experiencing enforced deprivation;

— living with a disability in Ireland today can bring extra costs of between €207 and €276 per week;

— almost 50 per cent of people living with a physical disability experience difficulty going outside the home alone due to inadequate transport provision;

— despite provision under the Disability Act 2005 for an assessment of need, thousands of children are being denied their developmental potential for years while stuck on waiting lists for therapy supports;

— today, one in 20 people in Ireland is a family carer, collectively providing some €10 billion in unpaid care each year;

— respite care involves giving families and carers much needed assistance in caring for their loved one for a short period – that current provision is far short of what is needed, and without adequate respite, family carers are themselves left more vulnerable to ill-health;

— the in loco parentis clause in homecare nursing contracts for sick children is causing unnecessary stress, worry and constraint on the parents of sick children;

— the Health Information and Quality Authority (HIQA) are helping to ensure that best standards apply in all special care homes, although they are still under-resourced; and

— Ireland has at last ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), having signed it over a decade ago in 2007;

and calls on the Government to:

— ensure that there is a corresponding entitlement to a service along with an assessment of need enshrined in legislation;

— prioritise the scheduling and passage into law of the Disability (Miscellaneous Provisions) Bill 2016;

— establish, without any unnecessary delay, the Decision Support Service promised in the Assisted-Decision Making (Capacity) Act 2015;

— recognise the importance of the two implementation mechanisms provided in the UNCRPD through the adoption of the Optional Protocol to the CRPD;

— provide significant additional investment to combat the long waiting lists for therapy supports such as occupational therapy, physiotherapy, speech and language therapy and psychology;

— recognise the additional expense of having a disability and increase income supports accordingly;

— increase personal assistance hours by 500,000 to address the unmet need and enable people to be active participants within their family household, their communities, employment and society;

— increase funding for housing adaptation grants by 50 per cent from current level;

— increase respite care services by 20 per cent;

— fund appropriate employment services to enable and empower people with a disability to gain or retain employment;

— ensure that everybody with serious medical needs has a secure medical card;

— abolish immediately the in loco parentis clause in homecare nursing contracts for sick children;

— significantly increase investment in transport accessibility and work towards making all public transport wheelchair-accessible;

— introduce a scheme to replace the mobility allowance and motorised transport grant;

— allocate the necessary funding to progress de-congregation;

— increase resourcing for HIQA to facilitate the carrying out of the most effective inspection regime possible, thereby ensuring best standards will apply in all settings;

and

— designate a lead co-ordinating department to ensure joined-up thinking and joined-up action across all Government departments in the interest of people with disabilities.

I wish at the outset to extend a warm welcome to all representatives of disability organisations who have joined us this evening in the Visitors Gallery. I welcome too the Irish Sign Language translators, and our friends from the Irish Deaf Society. Fáilte rompu uilig. I also welcome the Minister of State with responsibility for disability issues, Deputy Finian McGrath, and trust that he will find favour with our motion.

The issues of address this evening rank, in my opinion, among the most important and the most urgent of matters requiring Government action today. Nothing defines us more as a people than our willingness to provide for the needs and rights of people with a disability or disabilities. Despite the recent ratification of the United Nations Convention on the Rights of Persons with Disabilities, we, the people of Ireland, still have a considerable journey ahead of us.

The motion before us is a comprehensive compendium of critical steps that we in Sinn Féin believe are necessary to address the deficit in supports for people with disabilities. We believe that they represent a societal imperative. Next week brings us into the second quarter of 2018, commencing the six-month countdown to budget 2019. Now is the time for the Minister of State to exert his influence and that of his Independent Alliance. Budget 2019, the last of the three committed to by Fianna Fáil in its confidence and supply arrangement with Fine Gael, offers the next best opportunity to really make a difference in the lives of people with disabilities. I urge the Minister of State to really go for it, and to have budget 2019 recognised as the first budget that placed people with disabilities front and centre.

Improved resourcing of services and supports is an oft-cited demand. There is a tendency by some, including some elected voices, to think only of health care provision and social protection payments when considering the needs of people with disabilities. However, like all of us blessed with better health in mind and body, people with disabilities, be they physical, intellectual or both, have needs across all State services. Adequate social protection payments are of course an absolute right, and should reflect the real cost of living with a disability. Health care needs at every stage of life must be provided for. No-one with serious medical needs should feel the loss of a medical card, irrespective of other changes in his or her circumstances.

We call for improved access to key therapies and supports, including the following: significant investment in personal assistant hours, care provision and respite access; specially tailored housing to meet the needs of people with disabilities, and a significant increase in funding for housing adaptation grants through the local authorities; employment opportunities to be pro-actively encouraged and appropriately supported; and access to all levels of education to be encouraged and facilitated, assisting people with disabilities attain appropriate qualifications. All public transport options should be wheelchair accessible, and private providers encouraged to likewise facilitate wheelchair users. Other transport-related initiatives need to be taken to facilitate the independent transport needs of people with disabilities, mindful in particular of those who, by virtue of location, have no access to public transport.

Governments have failed to properly respond to the needs and rights of people with disabilities, in part because of the siloed nature of each Department's operation. We need joined-up thinking. We need an overseer Department that will co-ordinate the actions and initiatives of all Departments in meeting their responsibilities to people with disabilities. Looking back over our list of measures that are all absolutely needed, we note the required involvement of the Department of Employment Affairs and Social Protection; the Department of Health; the Department of Housing, Planning and Local Government; the Department of Education and Skills; the Department of Transport, Tourism and Sport; the Department of Children and Youth Affairs; and the Department of Rural and Community Development. Who will co-ordinate? Who will lead?

People with disabilities, their families and their carers all need a champion at the Cabinet table. Yes, I have no doubt that the Minister of State is such a man. However, there is only one Department and one Department head who can deliver across all of the listed portfolios, and that is the Taoiseach of the day and the Department of An Taoiseach. I appeal to the Taoiseach, Deputy Varadkar, this evening to seriously consider this proposition. It is time that all the loose strings of government were tied together, making for a better, stronger, more cohesive response to the needs and rights of people with disabilities.

For me and for all people across the disability sector, 7 March 2018 was a red letter day. The ratification of the UNCRPD, over a decade after Ireland signed the convention, represented a long-overdue step towards full and equal rights for people with disabilities. What has changed as a consequence? Without the ratification of the optional protocol, people with disabilities will be denied access to the key mechanism for address and redress of the denial of their rights under the convention. That access, that entitlement, is what is required. The Government gave a commitment to ratify both at the same time prior to the last general election. That promise has now been reneged on. How long must people with disabilities wait before their rights under this convention can be vindicated? I encourage Minister of State to seek a Government reconsideration of the decision to defer ratification of the optional protocol. Nothing will change what needs to be changed speedier than enforceability.

I also call on the Government to immediately abolish the in loco parentis clause in home care nursing contracts. The current requirement for the parent to remain in the home while clinical staff are in attendance, or to appoint another competent adult to attend in their absence, is causing significant and unnecessary stress for already stretched parents coping with the care needs of children with complex medical conditions. For whatever limited period that the parent could have to go about the ordinary out-of-home chores, to visit a shop, to call on a friend or to walk in the rain, surely the presence of a trained nurse or a qualified health care assistant offers the chance of a badly needed and well-deserved break. In these cases, where parents are providing 24-7 care to their very sick child, invariably faced with life-limiting conditions, any small respite is a godsend. We are talking about intervals of rest and relief that will help parents to face all that their child requires of them again. Why must we compound their already difficult days and nights? They are heroic. They are true bearers of pure love. Let us scrap the clause and show some little appreciation and kindness.

While there are indications of support for the motion under debate, and I hope that they are across the board here in this Chamber tonight, I ask in this World Autism Awareness Week, that we would together take a stand in this House, not just by allowing this motion to pass as I hope it will, but by committing, most importantly, to its implementation in full. I urge the Government to ensure this is the result we will face.

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