Services for People with Disabilities: Motion [Private Members]

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 the 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 more speedily 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.

I have to hand the Proclamation of 1916. It is a proclamation of the Republic. We are all very conversant with it. It is very clear on the issue of equality. It states: "The Republic guarantees [...] equal rights and opportunities to all its citizens, and declares its resolve to pursue the happiness and prosperity of the whole nation [...] cherishing all the children of the nation equally." It does not say, "except for those who have a disability". Arguably, the Proclamation is talking directly about those people who need and deserve equality, those who require more rights than the rest of us.

There are 633,000 individual citizens, many with families, trying to cope financially, physically and emotionally with a disability. It used to be that these citizens were locked up in institutions. Thankfully, those days are gone although the Ombudsman for Children, Dr. Niall Muldoon, recently found the State had been denying the necessary support to a woman who had been fostering a teenager with Down's syndrome and severe autism called Molly - this is not her real name. The ombudsman found the State had abdicated its responsibilities and that there is a problem facing many of the 472 children with disabilities, including Molly, in the care of the State. The ombudsman's recommendations were accepted by the HSE and Tusla. The HSE pointed out, however, that its commitment is ultimately resource dependent. In other words, it needs the funding. I raised this issue at the time it arose. In my constituency, this is the case. Other Deputies have been highlighting the crisis over the lack of provision of respite beds in County Louth for adults with intellectual disabilities. They have been consistently raising the absence of emergency services. I have written to the Taoiseach, former Taoiseach and Ministers responsible for health, including the Minister of State. I have made costed proposals, which I sent directly to the Minister and the Taoiseach, Deputy Leo Varadkar. Despite this and all the promises, there are still no emergency respite services for citizens in the constituency I represent.

There is still no Disability (Miscellaneous Provisions) Bill 2016. There is still no decision support service, as promised in the Assisted Decision-Making (Capacity) Act 2015. The Fine Gael-Labour Party Government scrapped the mobility allowance and the motorised transport grant for people with disabilities in February 2013. It promised a new scheme. This was after it was found that the old scheme was illegal and not in compliance with the Equal Status Act and Disability Act. Five years later, there is still no scheme.

It took 13 years for the Government to finally ratify the UN Convention on the Rights of Persons with Disabilities. Sam was five when the Government should have ratified the convention. Since his 18th birthday, in July last year, he has had no respite support. He has severe autism and significant high-support needs. He has complex medical needs and diabetes. He is coeliac and is doubly incontinent at night. Brendan is 13 years old and has a diagnosis of cerebral palsy. His condition is life-limiting. He is bedridden, he has open sores and scoliosis and he is awaiting surgery. He has profound medical needs. His mother is fighting to get in-home respite care and a home-care package that meets his needs. The Minister, Deputy Simon Harris, the Minister of State, Deputy Finian McGrath, and the Taoiseach met Sam's mother. They know that Sam and Brendan's mothers have to fight the system every single day to get services for their children. These are only two examples of citizens with disabilities who have been let down by the State.

It may be that the Government will not oppose this Private Members' motion. That would be welcome but it would not be good enough. It will not make one iota of a difference to citizens with a disability, their families and carers, and those in the voluntary and community sector who help them. As the Minister knows, it will not make any difference unless and until the Government ensures funding is made available to meet the needs of these citizens, unless it makes the citizens and their rights a priority, and unless, as Teachta Ó Caoláin has said, the Taoiseach champions this cause. Nothing else will be good enough.

There are more than 650,000 people in this State living with a disability. That is in the region of 13% of the population. The majority of them rely on public transport to access work, health care and social and community activities. People with a disability have been so badly let down by public transport in this State. I have raised this on many occasions.

Disabled people in this State have to plan every journey meticulously. Sometimes it must be done several days in advance if they are to comply with the rules laid down by public transport companies. Unmanned train stations are a massive problem, as are broken lifts and the fact that people have to give prior notice to travel. Prior notice is totally unacceptable to the majority of disabled people. That Iarnród Éireann's policy is now to remove staff from train stations complicates this even further. This could be remedied quite easily through the provision of buses with lifts and ramps, and footpaths of an adequate level. It could be remedied if train stations had sufficient staff. The ongoing battle faced by people with disabilities in going about their daily lives is a source of considerable frustration, stress and anxiety. I have actually heard what is happening described by disability activists as a form of apartheid. There is clearly a separation of rights, and people with disabilities have been left out in the cold in this State. If the State is advocating that people with disabilities have a right to work and participate, it must act to ensure they can travel freely so that their needs may be accommodated. The constant stress over travel is having a detrimental effect on people with disabilities day in, day out.

I have heard regularly from constituents of mine that the bus drives off leaving them at the side of the road because it is unable to accommodate their needs. I have also heard of people left sitting on platforms in railway stations because there are no staff to assist them getting onto the train. Equally bad is leaving people on trains because there are no staff to help them get off. If inclusion for people with a disability means equality of participation, it should include all parts of society. The State has an onus to facilitate those concerned. I hope the Government supports the motion. I hope it is genuine support backed up with a plan of action to deliver rights for all.

At the core of this debate are families. Family carers provide around €10 billion in unpaid care each year. They face daily battles just to get what they are entitled to. They face inadequate respite services, inadequate assessment services and difficulty in obtaining allowances and benefits, and they must constantly jump through hoops for the State to get every little thing.

Families of children with disabilities rely heavily on organisations such as the Jack and Jill Children's Foundation because they cannot rely on the State. The foundation is invaluable to the families it helps because it places the family at the centre and builds care packages around each family's dynamic. The foundation advocates on behalf of parents and families on issues such as the in loco parentis clause in home-care nursing contracts. This clause needs to be abolished immediately. The HSE must consider seriously the impact it has on parental well-being and on combating isolation, and it must give parents a break. It impacts unfairly on siblings, who can feel isolated and overwhelmed by having a brother or sister who needs so much of their parents' time. It makes parents virtual prisoners in their own home. This and other aspects of the motion are desperately needed. We need to see meaningful change and put legislation in place that helps instead of hinders.

I want to focus on one part of the motion, namely, the in loco parentis clause contained in the contracts for home-care packages for children with complex and life-limiting needs.

This policy is shameful and uncaring and it mandates the families of sick children to stay in their homes during nursing visits. It has rendered home-care packages ineffective. The benefits have been marred and, regrettably, an environment of suspicion, tension and mistrust has been created between the provider and the family. This is something which is very close to my heart and on which I have campaigned for more than two years. I implore Members to vote to put an end to a policy, the only purpose of which is to cause immeasurable distress and anxiety to the families of some of our sickest children. Vótáil chun deireadh a chur leis an chleachtas náireach seo.

At the core of this motion are the rights and entitlements of a group which is often among the most vulnerable and marginalised in society. It does not need to be this way. People with disabilities are not defined by them. In fact, they are some of the most inspirational individuals I have ever known and often argue that they have a responsibility to the abilities they in fact possess. As legislators, we also have an obligation to them. I say to the House that if it supports the motion, it will show its support for people with disabilities and their right to reach their full potential. Let us act after the motion passes in the Houses of the Oireachtas.

I thank the Deputies for raising this motion and welcome our friends in the Gallery from the disability community. I welcome the opportunity to restate the Government's commitment to people with disabilities and their families. I will not oppose the motion as I agree with the sentiments it expresses. I have worked very closely with Deputy Ó Caoláin on this issue in the past. There are important challenges we must face if disability services in this country are to meet the hopes and expectations of those at their heart. I refer, of course, to the service users. The need to think ahead and plan is fundamental to these challenges. I know I speak for everyone in the House this evening when I say this is a significant challenge that we must meet. We can agree that, in spite of advances, the pace of change regarding disability services and fostering a culture which ensures equal opportunities for all has been slow. However, progress is being made.

Disability is not a health issue, nor is it a transport issue or employment issue. It is an equality issue and a rights issue. The Opposition would have us believe at times that there is no joined-up thinking involved. This is not so. The Government has had a whole-of-Government approach to disability for a number of years. The Department of Justice and Equality is the lead policy co-ordinator for disability and equality and it oversees the implementation of the national disability inclusion strategy, which I published last July. The implementation group, which I chair, ensures that all Departments are on schedule to meet their specific targets. As Deputies rightly point out, people are living longer and adults with intellectual disability have age-related illnesses and conditions. More people with a disability have more complex needs. This important message is confirmed in the self-reported figures from the most recent census. The Government is responding by providing the right supports at the right time to support people to live the full and independent lives that we all take for granted. In relation to health, we have embarked on a significant programme of reform which is informing a new model of service provision. This includes the "Transforming Lives", "Time to Move on from Congregated Settings" and "New Directions" initiatives. In 2018, we will continue to drive through this programme of reform and to develop our workforce to ensure the delivery of a person-centred social care model of service. We will continue to strengthen and enhance governance and accountability across the entire disability service sector.

Since the commencement of Part 2 of the Disability Act in June 2007, any child born on or after 1 June 2002 who is suspected of having a disability is eligible to apply for an assessment of need. The number of new applications for assessment under the Act has risen steadily since it was introduced. In a six-month period in 2007, 1,100 applications were received whereas almost 6,000 applications were received in 2017. Substantial work was undertaken during 2017 to address waiting times for assessments of need under the Disability Act 2005. All community health care organisations have developed improvement plans to address areas of non-compliance with the statutory timeframes. A revised standard operating procedure for assessments of need has been developed to ensure that there is a standardised approach to assessment across all areas. The new procedure will support children with disabilities to access timely assessment and appropriate intervention and is effective from next week. This will also assist in reducing waiting times both for assessment and interventions.

I assure the House that the Government appreciates that waiting times for therapy supports can be very difficult for those affected. Significant investment has been made in the therapy area in the last few years and the investment has been augmented and bolstered by further funding as recently as budget 2018. For example, funding of €4 million was provided in 2016 for up to 83 additional full-time speech and language therapy posts to prioritise the longest-waiting children. As a result of this initiative, total national waiting lists for under 18s have decreased by over 10% from July 2016 to January 2018. Furthermore and acknowledging the particular challenges in accessing occupational therapy services, funding was provided in budget 2018 for an additional 40 occupational therapy posts. It is important to acknowledge that in the context of tonight's debate.

A number of Deputies referred to respite services and home support. The Government's ongoing priority is the safeguarding of vulnerable people in the care of the health service. As part of its ongoing service provision, this year the HSE will provide over 182,000 respite nights and 42,500 day respite sessions to families in need right across the country. I accept the points made earlier. We acknowledge that there is an urgent need for increased respite care throughout the country. That is why an additional €10 million has been secured specifically to enhance respite care in the disability sector. This is being rolled out as I speak. A fund of €8 million will be used to provide 12 new dedicated respite houses which will come on stream this year. That is one in each HSE community health organisation area and three in the greater Dublin area. It will add 19,000 extra respite nights in a full year. In addition, a further €2 million extra funding will be used for innovative respite solutions such as home sharing and extended day services to provide assistance where people and families need it most.

I turn to day services for people with disabilities. An additional €12.5 million will be provided this year - €25 million in a full year - to fund 1,500 school leavers and those exiting rehabilitative training who will require a HSE-funded adult day service next September. It is hoped that the HSE will be able to inform families of placements by the end of May. As in previous years, the HSE will endeavour to ensure that the maximum amount of the allocated funding is retained for providing services. While needs in 2018 appear to be greater than in previous years, every effort will be made to curtail the amount of funding that has to be allocated for rent lease. Some funding will also be used to equip new locations. I assure the House and those in attendance that the HSE is actively engaged with all day service providers and other stakeholders in developing solutions to meet the identified needs of school leavers in 2018.

In relation to community living, I note that there are now fewer than 2,400 people living in congregated settings. A further 170 people are expected to move to community living this year. The HSE has a commitment of €100 million in capital funding from my Department to accelerate the decongregation process and capital assistance funding of €88 million is available this year from the Department of Housing, Planning and Local Government specifically for the disability sector. This is joined-up thinking and it shows how a whole-of-Government approach to disabilities works for individuals.

The Government is committed to protecting the level of personal assistant, PA, services and home support services available to persons with disabilities and has provided 1.46 million hours of personal assistance to more than 2,000 persons with a disability, an increase of 60,000 hours on the 2017 target, as well as providing 2.93 million hours of home support to adults and children with a disability, an increase of 180,000 hours over the 2017 target.

This Government's objective is to deliver disability services that are person-centred. Being person-centred is about putting those who use our service at the centre of all our activities. I am listening to the Opposition but I am also listening to the disability community. It is about listening to people and their advocates and transferring our focus from the service itself to the people who use it. I share with my ministerial colleagues and the other members of the Government a strong desire to ensure that people with disabilities are afforded every opportunity to realise their potential in every dimension of their lives, and I support a rights-based approach.

The Government is committed to improving income supports and employment services for people with disabilities. Both budgets in 2017 and 2018 provided for a €5 increase in the maximum weekly rates of all social insurance and social assistance payments, including the blind pension, disability allowance, illness benefit and invalidity pension.

The Minister of State needs to conclude.

These increases are reflected in this week's payments. When talking about a person's ability, whatever his or her talents or gifts, each person has something to offer and it is society's job to ensure that those with disabilities thrive, fulfil their ambitions-----

I thank the Minister of State. His time is up.

-----and contribute to their community. If that goal is to be achieved, then people with disabilities must be central to all of that.

Deputy Murphy O'Mahony is sharing with a number of colleagues and the time is quite limited.

I wish to share time with Deputies O'Keeffe, Niamh Smyth, Cahill, Browne, Rabbitte, Donnelly, Breathnach and Aindrias Moynihan.

How we look after and engage with people with disabilities is a hallmark of a caring and compassionate society, and in this House we must set a lead. Fianna Fáil will be supporting the motion. We believe that disability inclusion must be one of the central tenets of the Government.

I note that the Government is not opposing this motion but the Minister of State, Deputy Finian McGrath, should not think that such a move earns him any credibility on the issue. The fact is that in many ways things have gone backwards under his tenure. For example, waiting lists for occupational therapy assessments are up 50% since 2015. There has also been a significant surge in the number of children waiting for assessments of need under the Disability Act 2005. We are awaiting Committee Stage of the Disability (Miscellaneous Provisions) Bill 2016, which is still only half the Bill it should be. One could not make it up. The commitment of the Minister of State to sign the optional protocol at the same time as ratifying the UN convention was not honoured. The Minister of State has a lot of catching up to do if he is to meet his commitments to those with disabilities.

For our part, Fianna Fáil is committed to having a full Minister at the Cabinet table with responsibility for disability issues. We envisage that such a Minister will drive and co-ordinate disability inclusion while also embedding the idea that disability is a cross-departmental issue requiring a whole-of-Government approach and that each Department has responsibility in terms of disability inclusion policy.

The current location of disability policy within the Department of Justice and Equality is not suitable. It has relegated disability to a secondary issue and, as a consequence, we have seen little progress in this area. In government, we would place disability policy within the Department of Employment Affairs and Social Protection. It is from this Department that many decisions are made that affect those with disabilities and, as a consequence, we believe that disability policy should fall under this Department's remit.

We are also committed to signing up to the optional protocol to the Convention on the Rights of Persons with Disabilities. It is not clear why we are not signing up at this stage. When the Fine Gael and Labour Party Government published a roadmap to ratification of the convention in 2015, a firm intention to sign and ratify the optional protocol was also stated. This was reiterated on behalf of the Government by the Minister of State, Deputy Finian McGrath, at the Oireachtas Joint Committee on Justice and Equality in December 2016. Figures such as the 4,000 plus children overdue an assessment under the Disability Act show why we must sign up to the protocol.

Figures I received recently show that at the end of January this year, 4,312 children with disabilities were being kept waiting for their statutory right to an assessment under the Disability Act. The number of children waiting had surged from 3,217 in September 2016 to 4,120 at the end of May 2017, an increase of 28%. While the rate of increase has slowed, the fact remains that the position is worse than last summer. It is wrong to have so many children unable to receive their legal entitlement within the statutory timeframe and this must be addressed as a matter of urgency.

As a Cork Deputy, I am particularly concerned that there are 1,869 overdue assessments in the county and city and many of these are in my constituency of Cork South-West. This seems completely disproportionate to the national figures and deserves further scrutiny, but I will talk to the Minister of State about that another day.

Another area where the Government is falling down is where, five years on from its closure to new applicants, we are still awaiting a replacement for the mobility allowance. We also need to see a review of the disabled drivers' and disabled passengers' scheme as nearly 40% of all applicants in 2017 were declined.

I could go on all night. This is a very serious issue. With respect, the Minister of State is falling down on the job. Deputy Finian McGrath may be doing his best but it is just not happening.

I support the motion. As Fianna Fáil spokesperson on sport, I wish to highlight that we must respect the right of people with a disability to participate in this sphere. We must acknowledge there are deficits and, in turn, serious consequences for persons with a disability in the area of recreation activities. There is a need for more inclusion and the provision of accessible fitness facilities. All of these are paramount in the attainment of mobility for those with disabilities. In addition, playground facilities should be adapted and enhanced for use by children with a disability where possible.

First, I draw the Minister of State's attention to the crazy situation in which parents in Cavan-Monaghan find themselves when it comes to the assessment of need, which has been spoken about in the debate. Parents of children with special needs are being told that they will have to wait up to three years for the assessment of need and perhaps just as long again for such specialised interventions as occupational therapy and speech and language therapy. As the Minister of State will be aware, early intervention is key and critical to the success of any child facing a physical or intellectual disability, and the figures for Cavan and Monaghan are staggering and appalling in this day and age. In the community health care organisation, CHO, area 1, which includes Cavan-Monaghan, Donegal, Sligo and Leitrim, the total number of children awaiting their first assessment of need is 178. What is very concerning for both me and parents living in the constituency is that Cavan and Monaghan have the highest waiting list of the three areas in the CHO, accounting for 128 of the total of 178 children. There is clearly something fundamentally crippling in the system that parents in my constituency and their children are suffering such exasperating and detrimental waiting times.

The Minister of State has been to visit the Holy Family School, in Cootehill, in County Cavan, which caters for pupils with severe and profound learning disabilities and pupils with autism. There are almost 200 such children attending the Holy Family School. Their daily challenge, and that of their parents, is to fight for their basic and human right, that is, access to services such as occupational therapy, the need for which we have seen a significant surge in recent times. Parents of children attending the Holy Family School, which I am using as an example, have resorted to fundraising to have a visiting occupational therapist come to the school because they have given up hope of ever having that intervention or appointment through the public system.

This must be a breach of their children's fundamental rights and it is inexcusable.

This is World Autism Awareness Week. I know from his visit to Cavan-Monaghan that the Minister of State's heart is in the right place, but I implore him to please put people with disabilities, both children and adults, and equal opportunities for them front and centre of Government.

Now for the view from Tipperary, I call Deputy Cahill.

In the time available I will focus on two aspects of disability and the issues around it. As Deputy Murphy O'Mahony noted of the disabled drivers and passengers scheme, more than 40% of the applicants for the scheme are being rejected. Numerous people have come into my constituency office who have applied for the scheme. They are genuine applicants. The criteria and assessment of this scheme must be reviewed because a rejection rate of 40% is unacceptable. The scheme must be reviewed urgently and its criteria reviewed so that it operates fairly and that more people qualify for the assistance they need.

Children are queuing for assessments and many assessments are overdue. Some 75% of children who applied in 2017 are outside the protocol under the Disability Act. In my county alone, 144 children are waiting to be assessed. I have a letter here from the mother of one of those children, Niall. His parents are experiencing considerable frustration and anxiety, as they are sent on roundabout after roundabout trying to have their child assessed. Having failed through other routes, they thought that they would be able to get it done through his school but they were told that the school was allocated four assessments each year in September, and that they would have to wait until the next September before the school had any more places for assessment.

The Minister of State needs to examine this. More resources must be put in place. It is not acceptable to have 75% of applicants waiting outside protocol.

Disability need not be an obstacle to success. These were the inspirational words of the late Professor Stephen Hawking, one of the most influential scientists of all time. He certainly proved his own statement. He also stated that he would not have survived without the high quality treatment provided to him by the NHS. I am the brother of a woman with spina bifida and hydrocephalus and the godfather to a young woman with Down's syndrome and have nothing but praise for our health system once it can be accessed. However, as The Irish Times reported recently, Ireland has the worst accessibility for health care out of 35 countries. This lack of accessibility has consequences. It means thousands of children are being denied their potential. It means lower educational attainment, higher unemployment and increased poverty. It means family carers, parents, foster parents, grandparents and younger siblings are exhausted as a result of a lack of adequate respite, a circumstance all-too common in my own county of Wexford. This does not need to be the reality.

To embrace diversity and inclusion, one must not only create opportunity but one must make the opportunity accessible. One does that by putting in place supports to allow people with disabilities to not only survive but to thrive so that they have an equal and equitable opportunity to reach their full potential. Equality and equity for those with disabilities should not be treated as a privilege but as a right. There is rightly a conversation about inclusion around gender, race, sexuality, and age but this conversation must also embrace and include people with disabilities. I am glad that this conversation is happening here tonight.

I thank Sinn Féin for bringing forward this motion and giving me the opportunity to speak on it. Actions speak louder than words and for many families who come into my clinic, all I can see is their stress, upset, hurt and anger as they try to present cases in relation to their children who they feel are not being treated equally in Irish society. The Minister of State and I have had long conversations around congenital conditions, that is, children who were born with a condition such as albinism or Down's syndrome, that they do not need review after review, and assessment after assessment, but that they can carry through an initial assessment. That should then open doors for them when it would come to accessing early interventions that they need as well as respite care. Respite care and the inability to access it is one thing that affects us most in my constituency of East Galway and I know of one woman whose daughter has not had respite care in four years.

Tonight's motion concerns the rights of those with disabilities to lead equal and dignified lives. Andrew O'Malley is 33 years. Two years ago, he had an accident in Sligo that left him paralysed from the neck down. He was stabilised in Sligo because it was the nearest hospital and was admitted to the National Rehabilitation Hospital, NRH, in June last year where he received great care. In September 2017, the NRH discharged Andrew O'Malley but the HSE said the only place for Andrew to go was back to Sligo because that was the only place with a legal obligation to take him, as the admitting hospital. The Sligo hospital said that he would live in its intensive care unit, which was obviously not the place for him to be.

Andrew's care at the NRH has now been reduced and it is keen for him to move on but the HSE has done nothing. I brought Andrew's case to the attention of the Minister, Deputy Harris, who connected me to the HSE's national disability team led by Dr. Cathal Morgan. Dr. Morgan and I spoke in January and I was assured that a suitable place for Andrew would be found but when neither I nor Andrew or his family heard anything from the HSE I wrote to Dr. Morgan asking for an update. I was assured my email would be brought to his attention. I wrote once again several weeks later, still seeking an update. Again, I was assured my email would be brought to his attention. Several weeks later, I wrote again imploring Dr. Morgan for an update. I was assured my email would be brought to his attention.

The Deputy is naming people. He has named the client and someone from within the HSE. It is inappropriate to name the constituent but also the member of staff within the HSE. It is irregular.

I have Andrew O'Malley's permission. I have worked closely with him and he knows I was going to raise the matter this evening.

The Deputy should not make accusations against identifiable members of the HSE staff in circumstances where they cannot defend themselves.

I will not mention him again. I am not making accusations, I am simply laying out the facts as they occurred. I take the Ceann Comhairle's point and will not mention his name again.

I met Andrew's sister last night.

Right. Three months since I first spoke to the national disability team, I have still heard nothing. Six months since Andrew was discharged, he has heard nothing. That is the reality on the ground for people with disabilities.

I ask that the Government and the officials who make these decisions affecting these people's lives be held to account for their actions.

I call Deputy Declan Breathnach. I am conscious that my intervention has delayed matters.

I thank the Ceann Comhairle. I will share the remaining time with Deputy Moynihan.

When I first came into the Dáil, I had a long conversation with the Ceann Comhairle prior to his taking up his position that this Dáil should champion disability. I know that the Ceann Comhairle has made many efforts in regard to mental health in many forums in the last two years, and has sought to get the House to focus on the matter.

This evening's debate is on the issue of disability. I have thrown away my script as everything I wanted to say has already been said by many other Members. Deputy Rabbitte observed that talk is cheap. All I want to know is how I deal with parents of a child with spina bifida who are still waiting on an operation that was promised to them in this House almost six months ago? How, on a day-to-day basis, do I deal with elderly parents - people in their 80s - who have 50 year old children, if one wants to call them children, and all they worry about is when they die, what will happen to their loved one? How do I deal with people such as Brendan or Sam, to whom others referred, who are in wholly unsatisfactory accommodation because the local authorities are not sufficiently geared towards meeting the demand for suitable accommodation?

People and families are at breaking point over the lack of respite. I acknowledge the Minister of State's efforts on this. He mentioned the €10 million provided and Louth will certainly benefit from that. That is fine.

We do not have accommodation for people. I am all for decongregation, but the reality is, to take St. John of God's in Drumcar, County Louth as an example, that in excess of half of the people in the centre will never be decongregated. We need properties and suitable houses to make sure people will be accommodated when they need to be. I have said in the House in previous debates that we need proper local advocates for people with disabilities. Despite the fact that I am told that there are registers of people with a disability, people in every county and local health service area need a one-stop shop to which they can go in order to access an advocacy service. The local authority needs to record and, believe it or not, pre-record their needs in order that we can have a plan.

On the issue of work and community employment schemes, not every person with a disability may be in a position to be in employment. A percentage of community employment scheme places should be specifically allocated for people with disabilities. I challenge the Minister of State to tell me that he will have 40 occupational therapists available to take up employment. As I see it, we talk about creating jobs, but it does not happen.

I welcome the opportunity to speak. I thank Sinn Féin for bringing forward this important motion which I am keen to support. In the time available to me I will focus on transport and some of the challenges facing people with disabilities. There are the obvious ones such as the challenge facing those with a free travel pass but in whose area no bus service operates. There is also the constant battle to access transport to day services. That is one of the more obvious challenges, but an issue highlighted for me recently affected parents of younger children who wanted to use a bus service to access day services. While the school recognises that there is a need for a nurse in the centre, there is no nurse available on the bus, on which the children could spend anything up to two hours on each day. That is a concern for parents. There should be a nurse available on the bus in case there is an incident or medicine needs to be administered but also simply for the exchange of information at the beginning and end of the day.

Another issue with transport which has been highlighted for me by parents concerns VRT and VAT and the cap of €16,000 in respect of modified vehicles. That figure needs to be extended. While the current level may be adequate for some, if a person has greater needs - perhaps he or she needs a lift, to have the floor of the vehicle lowered or to have a larger chair fitted - the cap is still €16,000. It has not changed very much in recent years. The Minister of State needs to review it in cases in which people have extended or greater needs.

We want people with disabilities to play a full role in the community. There needs to be the opportunity to access services. Disability inclusion must be one of the central themes of the Government. How we look after and engage with people with disabilities are the hallmarks of a caring and compassionate society.

I call Deputy Alan Kelly to give a view from County Tipperary.

To give another view from County Tipperary.

On behalf of the Labour Party, I want to speak in favour of the motion. I thank my colleagues for tabling it. I have had many conversations with the Minister of State about disability issues. Some of his family are very good neighbours of mine and I know that he is focused on his job and how passionate he is about it. As I only have a few minutes, I quickly want to raise a number of issues.

My colleague and a former Member of the House who did a very good job in this area, Kathleen Lynch, spearheaded the passage of the Assisted Decision-Making (Capacity) Act 2015, legislation which had been designed to bring Ireland out of the dark ages in how we treated some of the most vulnerable in society, namely, people with disabilities. We are fully committed to a massive overhaul of the services provided for them and knocking down as many barriers as possible. Included in that law was the provision of a decision support service, the establishment of which we needed to see as a matter of urgency.

We also have a duty to acknowledge and urgently address the financial burden medical care presents for people with disabilities. The motion is correct in its specific detail on this issue. While there has been an improvement in recent years in the awarding of discretionary medical cards, there is more work to be done. If a person with a chronic illness is faced with circumstances which include paying the full cost of drugs, inpatient hospital charges and for multiple GP visits, medical devices and so on, one can understand he or she is in a very challenging position.

I want to focus, in particular, on the issue of employment. Many people with disabilities, unfortunately, do not find the employment they deserve. I give to the Minister of State the example of a very good friend of mine whom he knows and about whom I have spoken in the House before. His name is Mr. Stephen Cluskey whom I got to know when I was Minister of State at the Department of Transport, Tourism and Sport. We rolled out a load of innovative campaigns, apps and websites on accessible transport. Stephen is wheelchair-bound but a very innovative young man. He is somebody who wants to work. Last year he brought a number of people with spinal injuries to the audiovisual room to talk about the volume of people who would not or could not take up employment because of their fear of losing their medical card. Obviously, many of them have very serious injuries and their medical condition involves incurring huge costs. The risk in taking up employment is so high that many are not willing to take it. If they were in a position where their medical card was secure - if there was one issue I would ask the Minister of State to look at, it would be this one - it would be cost-neutral to the Exchequer. I gave Mr. Cluskey a commitment that I would raise the issue which I have raised before. The people who find themselves in similar circumstances and people like him deserve a chance and not to face the risk of losing their medical card.

I also bring to the Minister of State's attention Part 5 of the Disability Act 2005 which deals with the commitment that 3% of the employees of public bodies will be people with disabilities. The Act states there will be a yearly report on this provision. I ask the Minister of State to publish it. I recently dealt in my county with the case of a young lady with a mild disability. She is a very capable young lady. I actually had to go and ask various organisations to find her unpaid employment which eventually a very good public organisation provided. However, I am really anxious that the Minister of State check to see that public bodies are reaching their quotas in that respect. It is a modest amount and certainly a level that can be met.

The area of assistive technologies is one in which the Minister of State could be innovative and it would not cost the Exchequer a huge amount of money. It could involve a combination of various subsidies and tax breaks. Technology really helps people with disabilities. There is a range of new technologies which we should be embracing to help them. I encourage the Minister of State to talk to the Minister for Finance. I have some ideas about which I can talk to the Minister of State personally as I come from a technology background. In some cases, the technologies are expensive, while in others, they are not, but we should be able to assist people with disabilities by facilitating their use in their everyday lives.

I have met HIQA, as has the Minister of State. It is not resourced to the required level. We also have issues with Tusla. We know that the issues raised in the report on foster children need to be addressed in working with the HSE. I know that Tusla is not exactly within the Minister of State's remit, but these issues certainly need to be addressed.

The provision of transport is a passion of mine considering that I had a role in the relevant Department. There are still real issues in the bus fleet. Approximately 70% of Bus Éireann's fleet has lower carriage floors. Now that we have adopted the convention, there is a requirement for private bus operators to provide for accessibility. They have no choice in that regard. Will the Minister of State ensure his colleague in the Department of Transport, Tourism and Sport will make sure it happens? There is a capital outlay involved, but this requirement must be met in all State contracting and tendering processes. It is something we should be dialling and of which we should be reminding people. It is absolutely wrong that anybody with a disability should have to make a commitment in making his or her travel plans 24 hours in advance. Working through the National Transport Authority, we need to ensure that will be changed.

I will move to the last couple of issues I wish to raise. I am sorry for jumping from issue to issue but I have limited time. Neurological waiting lists are an absolute scandal. I have had serious difficulties with them in dealing with so many people. I will tell the Minister of State a story about issues of inappropriate settings. We know that more than 1,000 people are in nursing homes who should not be there at all. I was dealing with a very sad case recently of a young man in a wheelchair who was in a nursing home. He did not want to be there but there was no other appropriate setting for him. That man is no longer with us. He was a very young man who took his own life because of the setting in which he was left. He was from a town the Minister of State and I both know very well. This shows the issues we have with people under the age of 65 being left in nursing homes or congregated settings. I know we must be realistic about this, but these are real issues that have longer-term consequences for the people involved and their families. I ask the Minister of State to consider a plan. To be fair to him, I do not think he will be able to deal with this in the term of office he has left. I echo some of the previous speakers' comments. We need a realistic plan for dealing with these thousands of people who are in such inappropriate settings, whether nursing homes or congregated settings. It is not good enough in 2018, in a country such as Ireland, that they are left in those settings, which are inappropriate for them.

Last year, as Ireland clocked up ten years without ratifying the UN Convention on the Rights of Persons with Disabilities, a series of protests took place outside the gates of Dáil Éireann. Hundreds of people participated in these protests. Before coming into the Chamber this evening, I spoke to one of them, a young person aged 21 who participated in several of those protests. This person said the young generation will not wait for its rights, that there is a mood for change and that it is not they who are disabled, but rather the system that is disabling them. That is very well put and is clearly shown by this motion and in this debate.

The fact that the budget for disability services was reduced by €159.4 million, or 9.4%, between the years 2008-15 is a stark illustration of that. We saw cuts to the mobility allowance, cuts to the motorised transport grant, cuts to the personal assistant scheme, cuts to therapy services, cuts to home support services, cuts to community services and more. We see that in the census of 2016, unemployment among people with disabilities and chronic illnesses stood at 26.3%, more than double the rate for the population as a whole, which stood at 12.9%. The Government still refuses people going back to work in those circumstances automatic access to a medical card. My colleague, Deputy Boyd Barrett, asked me to raise on the floor of the Dáil tonight that he met with representatives of Spinal Injuries Ireland yesterday, who asked us to give voice to their demand for automatic medical card entitlement for those with spinal injuries, and I am happy to echo that.

I mentioned the protest that took place outside the Parliament. This is part of an international trend. Some 45,000 people with disabilities participated in the women's protest called in the US at the time of the inauguration of Donald Trump. They were reviving a tradition of campaigning and protest that goes back in the US to the 1970s when the emergence of the modern disability rights movements was seen, inspired by the black civil rights movement, driven forward by returning veterans from Vietnam and then rippling across the world. These protests and this mood show that among people with disabilities of all ages the feeling is that enough is enough, that they will no longer tolerate second-class citizenship and that they are not second-class citizens, in particular, perhaps, among a younger generation that despises the gap between the official rhetoric and the reality, the gap between the rhetoric of a republic of opportunity on the one hand and the blatant, systematic discrimination they face in their day-to-day lives on the other. They are supported by other young people from outside that community who are prepared to fight against all injustice and oppression. As people engage in campaigns of this kind they can and, I hope, will draw political conclusions, as others who have campaigned for disability rights in the past have done. I refer to people such as Stephen Hawking, who has been mentioned in this debate. Stephen Hawking was obviously a world-famous cosmologist and was well known for having a particularly difficult form of motor neurone disease, but he was also a campaigner against the Tory Government and its policies of privatisation. He said he would not be alive if it were not for the National Health Service. I refer to people such as Helen Keller, who was perhaps the foremost champion of the cause of people with disabilities internationally in the 20th century. In a university question-and-answer session in which she participated, the following exchange took place which shows some of the political conclusions she drew from campaigning for people with disabilities. I will end on this exchange:

Q. Which is the greatest affliction, deafness, dumbness, blindness?

A. None.

Q. What then is the greatest human affliction?

A. Boneheadedness.

Q. Do you think the voice of the people is heard at the polls?

A. No, I think money talks so loud that the voice of the people is drowned.

Q. What do you think of capitalism?

A. I think it has outlived its usefulness.

I thank Deputy Barry for that insight. I now call Deputy Pringle. Is he sharing time with his colleagues?

I am sharing time with Deputies Connolly and Joan Collins.

I thank Sinn Féin for bringing forward this timely motion, a few weeks after Ireland officially ratified the UN Convention on the Rights of Persons with Disabilities. I am disappointed that the optional protocol was not enacted at the same time. I believe the failure to do so further entrenches existing inequalities for people with disabilities as they are prevented from holding the Government to account on this issue. I also believe a suite of legislative measures and funding packages should have accompanied the long-awaited ratification by the Government. I appreciate that the motion has come in light of Government inaction overall. Due to the little time available, I will briefly outline some outstanding issues regarding the provision of disability services in Donegal and the lack thereof.

I have been working alongside Our Children's Voice in Donegal, which represents families of children with life-limiting conditions. These families are forced to travel with their children to Dublin because no facility exists in Donegal to cater for children with rare diseases. Greater cross-Border access is urgently required for these children, including possible consultant-led holding clinics in Donegal to include outreach clinics, feeding clinics and full respite and hospice care. I echo the call in the motion for the removal of the in loco parentis clause in all contracts for home nursing care. Quality of life issues are crucial in the debate for increased funding and greater access to disability services. Provision of adequate health care is necessary to combat disability inequality. Wherever possible, early intervention, proper management and person-centred care must be made available according to an individual's needs.

However, Letterkenny University Hospital saw more than 5,000 people on trolleys last year, the highest on record. That is a sure sign of a completely dysfunctional, chronically underfunded and broken health system. Meanwhile, the HSE national appointment and recruiting system seems to be deteriorating, with it taking up to two years to fill vacant posts for diabetes care.

Intellectual disability services remain chronically underfunded. I want to thank the Minister of State, Deputy Finian McGrath, for agreeing to meet a delegation from the Cleary centre in Donegal town over growing concerns regarding previous commitments given on capital funding for the centre. Seaview respite home in Donegal has also faced chronic staffing problems. Recruitment is a real problem with vacant posts popping up in centres in Donegal due to a variety of reasons.

We must remember that the people in need of these services are some of the most vulnerable in our communities. Their families are some of the most dedicated individuals one will meet, but they have been asked to shoulder too much, including fighting for every little morsel handed to them by the Government. It is time to prioritise disability services across the board, not just in health care, and eradicate where we can the pervasive structural inequalities that have given rise to the deplorable statistics facing people who live with or end up with disabilities in their lives.

Along with my colleagues, I want to support the motion put forward by Sinn Féin. It has been introduced on the back of the fact that legislation is needed to underpin the ratification of the UN Convention on the Rights of Persons with Disabilities. It is a very appropriate time to do this.

I could not speak on 7 March on the debate on the ratification of the convention but I welcome that ratification. However, I will make the same point that other Deputies have made, namely, that it did not include the ratification of the optional protocol to the convention. It is now incumbent on the Minister of State to deliver that. He did not mention it in his speech and did not say when that particular aspect would be ratified along with legislation.

The Minister of State made many references to increases in certain areas of funding for disability rights. The reality is different. He referred to increases in hours and funding for speech therapy. My community wrote to the HSE in Tallaght about speech therapy. Families are waiting for 18 to 21 months for their children to be assessed. It is not acceptable in this day and age that families have to wait that length of time.

I am working with elderly parents who have adult children in St. John of God. They had a slight increase in respite care over the past year but not to the level they need. There is still significant concern that adults are not being catered for in terms of learning about independent living in the community when their parents pass away, which is of major concern to parents. It is scandalous that we are not examining housing provision for adults in care. I thank the Minister of State for meeting the parents' association in St. John of God special school.

I wish to refer to a letter a constituent of mine received regarding a wheelchair. It puts what is going on into perspective. A senior occupational therapist in Brú Chaoimhín in Cork Street wrote that:

I regret to inform you that following discussion with my line manager I have been advised that the order for the integrated lights for a new powered wheelchair will not be sanctioned at this time. I have been advised that it is the responsibility of the client to provide lights privately and it is recommended that bicycle LED lights for front and rear are used along with the use of high visibility vests for safety while using the powered wheelchair on the footpath.

I have raised this issue with the Minister of State. This should not be happening. Lights are a basic requirement for people using wheelchairs.

Níl ach dhá nóiméad agam so ba mhaith liom a rá go dtugaim mo thacaíocht 100% don rún seo. Is rún thar a bheith praiticiúil é agus cuireann sé béim ar na rudaí atá tábhachtach agus atá ag teastáil go géar.

I have very little time but I want to use the minute I have left to support the motion and thank Sinn Féin. It is a very practical motion which puts our focus where it should be, namely, implementing what should be available.

I want to thank the Minister of State for ratifying the convention. It took over ten years, but I am sure he had a primary role in it. However, the failure to sign the protocol is absolutely deplorable. The message we are sending out is that we are giving people rights but not quite yet and we will give them on a piecemeal basis, bit by bit, when it suits us. We never look at changing language. We need to realise that if we treat people with respect and enable them rather than disempower them we will save the economy money.

I will finish by referring to Galway. The motion refers to many things, including respite. We are not complaining. A senior social worker in Ability West said there is in place an extensive waiting list for all forms of respite for service users, including adults and children. There were two letters from a social worker in the Brothers of Charity, one in August and another in November, appealing to Deputies - I happened to be the person on this occasion - that there was an urgent need for funding for children's respite services. The social worker went on to say that two houses were available, one on a full-time basis but the other only part-time. I could go on, but I do not have the time. I am not here to argue, but rather to say that we should enforce rights and enable people with disabilities to live and participate in Ireland. Let us stop the hypocrisy and the cur i gcéill.

I am happy to have the opportunity to speak on this important motion. I commend Sinn Féin on bringing it forward. This is an issue which I am passionate about. I continuously support local disability support groups in my constituency, Cork South-West, and I am a former voluntary board member of CoAction West Cork. I am glad that the Minister of State is supporting the motion, but I hope he will keep his word in this regard.

Last year he visited CoAction centres in Clonakilty and saw the excellent work being done there for people with disabilities, which is mainly funded by volunteers. A delegation from CoAction met him in the Dáil and pointed out the lack of funding for the centres across west Cork. The organisation delivers so much in west Cork for people with disabilities and their families, day in, day out, and relies mainly on funding raised by volunteers. It is yet to receive any extra funding from the Department or Government following that meeting. I urge the Minister of State to look into this as a matter of great urgency.

Today, one in 20 people in Ireland is a family carer, saving the State €10 billion in unpaid care per year. We are lucky that we can depend on caring family members to do this work, although we should not have to. During my speech on the budget I welcomed the increase in carer's allowance and acknowledged the great work they do. I highlighted an issue brought to my attention by a number of concerned constituents who came to my clinics. They are waiting 15 weeks for their payments to come through. I urge the Minister of State to look at this. I am sure he or I would not like to be waiting for over three months to be paid.

It has been only a few months since "Prime Time" aired the programme, "Carers In Crisis", which highlighted the lack of respite care available for disabled citizens and the spin-off effect that has on our hard-working carers. A few weeks ago I welcomed the fact that the Government has finally approved the UN Convention on the Rights of People with Disabilities. Now we need action in this regard.

During that debate, I raised the question of the lack of supports for disabled persons aged over 18 years who have no transport services to and from necessary disability services across my constituency. The appalling treatment of these adults and their parents is staggering, to say the least. Some 12 months ago, the Minister of State met another delegation from west Cork. During the meeting we tried to put in place the groundwork to resolve this issue. It would simply mean that the Minister of State, the HSE and the Cork Local Link would sit around a table together to find some resolution. I have spent the past number of months trying to speak to HSE personnel who have refused to meet with us. The man concerned works with the HSE and is paid by the State, and should not be in his job if he refuses to do it.

I ask the Minister of State to personally intervene in this issue and assist people aged over 18 from Bandon, Clonakilty, Skibbereen, Bantry and all over west Cork. They should not be treated like second-class citizens, yet throughout west Cork they are.

I am grateful for the opportunity to speak on this very important motion. The Minister of State visited St. Mary of the Angels in Kerry and saw at first hand the great work which was being done there. Sadly, no new children are being admitted to the centre.

While no one is currently being moved, there is concern that people will be moved. I am calling for an independent assessment of how people moved to the congregated settings are getting on, whether in Kerry, Cork or anywhere else in the country, because for two people in Kerry it has not worked out. A few weeks ago I raised the case of a person who had been in St. Mary of the Angels for years and was moved to a congregated setting. At that time, this man was deaf and dumb but able to communicate through sign language. Owing to an overdose of anti-psychotic drugs in June last year, he is now also blind. He might as well be dead. His family are outraged. The Minister of State, Deputy Finian McGrath, said previously that nobody would be moved without the agreement of the family. This family were told three years ago that he had no other choice but to move because he was well enough to do so. I previously called for an independent investigation into this case but I have had no response yet. The family is waiting for a response. This is a serious matter. While previously this man could communicate, he is now deaf, dumb and blind. I cannot mention another person because were I to do so, that person's identity would be known.

I am calling for an independent assessment of how people moved to congregated settings are managing. There is no respite and mothers are worn out. There are many people trying to get into St. Mary of the Angels. There is no other place for these children. Families are worn out and broken from trying to manage. I ask the Minister of State, Deputy Finian McGrath, to investigate this matter and to allow fair process be applied to these people.

I want to deal with several issues. I welcome the people in the Visitors Gallery and our friends in the Press Gallery. On the so-called in loco parentis clause, I raised this issue with the Minister for Health, Deputy Harris, last November and I have also submitted several parliamentary questions on the matter but the HSE has refused to change its position. I ask the Minister to review this clause immediately as it is an excessively restrictive provision in the HSE home care day hours support system. It is described by the Jack and Jill Children's Foundation as a provision that makes virtual prisoners of parents in their own homes. I am pleading with the Minister to review it.

At the launch of the Jack and Jill Children's Foundation service evaluation report by Coventry University and Trinity College at the Royal College of Physicians of Ireland last November, we heard that the HSE in loco parentis rule is having a disproportionate and damaging impact on the families of the sickest children in this state. Under this rule, parents must remain in the house at all times, even when there is an agency nurse there providing care. This makes it impossible for family members to take the space necessary to get on with other vital aspects of their family life, including caring for other children and so on. This clause must not only be reviewed by the HSE, the HSE must strive to adopt the significantly more adaptable and family friendly model of care offered by the Jack and Jill foundation.

In County Tipperary, 51 families of seriously ill children have been helped by the foundation to date. I was delighted last year to hear from the Jack and Jill Children's Foundation that it is extending from four to five the age up to which it attends to sick children. This is possible, not owing to Government funding or to the HSE, but to funding provided by companies in the voluntary and private sectors which were lobbied by the foundation. There are many cases that are only now coming to light as a result of the review. It is only now that families are realising the impact of the in loco parentis clause whereby parents or another suitably qualified adult must remain in the home at all times when care is being provided. This makes a nonsense of home care. The people providing the care are experts. This is a mean, lean and horrible imposition by the HSE. It is heartless in the extreme and I ask the Minister to take another look at it.

The next speaker is Deputy Buckley who is sharing time with Deputies O'Reilly, Quinlivan and Ellis.

I commend my colleague Deputy Ó Caoláin on bringing forward this motion on behalf of Sinn Féin. For two decades Deputy Ó Caoláin has been a tireless voice in this House for people badly let down by our health services, and he continues that work in this motion.

In my own area of east Cork, more than 14,500 people recorded themselves as having a disability in 2011. This number has undoubtedly grown, as has the national figure by 13.5% up to 2016. People who have a disability represent a large constituency of people in this State. This constituency is even greater when their families and the communities who support them are taken into account. They are calling for proper recognition of their rights and their ability to fight to ensure they are guaranteed at the highest level.

I have said on a number of occasions that the gesture of ratifying the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, must be backed up by the implementation of policy and legislation which is in the script and spirit of the convention. It is a very important part of any international agreement that those who do not receive proper treatment by a state that has signed up to it must have recourse on an international level. The Government appears to believe that the optional protocol is not necessary, but without an appeal mechanism the rights protected by the convention can only be relied on in Ireland at the will of a Government. Without consistent back-up to an international appeals process the rights laid down in the convention become privileges. This is at odds with the spirit of the UNCRPD and the notion of human rights on this level. There can be no claim to equal treatment of those with disabilities if their ability to hold the Government to account is less than it is for others. This is particularly important to me as mental health spokesperson for Sinn Féin. People in this State with mental ill health have been let down repeatedly from the days of institutionalisation to date where patients are denied the right to a say in their care on a statutory basis. Without the protocol allowing for appeals to the UN, an Irish Government can sit on its hands or drag its feet on the necessary reforms of rights of mental health patients.

I ask the House to support this motion.

I was delighted to speak some weeks ago on the Government motion to ratify the United Nations Convention on the Rights of Persons with Disabilities. While the ratification of this convention is to be celebrated, there are a significant number of issues to be overcome in order that equality and inclusion for people with disabilities can be delivered. I commend my colleague, an Teachta Ó Caoláin, on bringing forward this motion.

Let us look at the facts. There are 643,131 people in this State who indicated in census 2016 that they have a disability. This represents an increase of 47,776. One in ten people below 45 years of age has a disability, rising to 20% by age 60, and the rate increases sharply above 70 years. I want to use my time to focus on the cases of Sean and Fionn. Wendy, the mother of Sean and Fionn, wrote to me to highlight the very real lack of support, the constant battling for basic services and the isolation that families with a loved one with autism experience daily. They have had to learn to live without respite because despite the growing population of Fingal, there are fewer than 15 respite places for a population of more than 100,000. Wendy has had to battle every step of the way to get support and services for her two boys. She spent six years fighting before Sean was diagnosed with autism and attention deficit hyperactivity disorder, ADHD. When Wendy' son Fionn was born, she had to spend two years fighting for him to get a diagnosis of autism. State services should not be fighting with parents who are seeking a diagnosis for their children. When it comes to the provision of services, Wendy has to fight the same battle day in, day out.

Wendy is exhausted. She is worn out from battling. She spends every day caring for her sons and fighting for services for them. Parents should not have to exhaust themselves fighting for disability services which their children need. Services should be provided and families should have the right to these services. This is Autism Awareness Week. Wendy told me that as a parent of two boys with autism she needs more than awareness. She needs understanding, acceptance, services and real help and support from the State.

Tonight, I echo Wendy's call. We must have real understanding and acceptance of autism, functioning services for people with autism and help for their families. The State must step up to the plate and ensure that children like Seán and Fionn are given the right to the services and supports they need.

I am grateful to have the opportunity to speak on this important motion on disabilities and I thank my party colleague, Deputy Ó Caoláin, for tabling it. As Sinn Féin spokesperson on business, enterprise and innovation I will focus my contribution on some of the difficulties people with disabilities experience in the business and employment environment.

As stated in the motion, people with disabilities still suffer from exclusion from the working world. In the last census the unemployment rate among people with a disability was 26.3%, more than double the 12.9% rate for the whole population. At the beginning of this month Fergus Finlay, the chairman of the implementation group of the comprehensive employment strategy for people with disabilities, published his second report. Unfortunately, my time is limited so I cannot discuss all of it, but the report had some worrying findings. There is "a real danger of paralysis" in the priority four area of strategy, which is focused on retention in, and re-entry to, work. Also, there is "a huge area of proactive work that needs to be done" for strategic priority six, which is focused on engaging employers. Unfortunately, of the six strategic priority areas, only half of one is coloured green, indicating good progress. That is simply not good enough.

With regard to the public service targets for employment of people with disabilities, the chairman of the implementation group recommends that "the Government give serious consideration to achieving the 6% target in three years rather than six". That would involve an increase from 3% to 4% this year, with identical increases in 2019 and 2020. People with disabilities are being left behind in the economic recovery so the Government should take a lead in this area. As the country approaches full employment in the next couple of years, a concerted effort should be made to ensure the participation levels of people with disabilities rise in line with the number of people returning to work.

Tá áthas orm deis a bheith agam labhairt ar an mholadh tábhachtach seo. People with disabilities have to struggle more than most people to have a decent quality of life. Most of what able-bodied people take for granted can be a challenge for people with physical disabilities. In the brief time available to me I will mention some of the challenges people with disabilities have to face each day.

Accessible transport is very important for people with disabilities. It allows them to engage fully with their community, access education or partake in employment. The removal of transport subsidy schemes such as the mobility allowance and the motorised transport grants in recent years has had a significant impact on the quality of life for people with disabilities who, in the normal course of events, experience great difficulty even leaving their homes. Removing these grants has only put greater hardship on people. A new travel subsidy scheme was promised in 2013 but it has yet to be delivered.

Proper housing provision for people with disabilities is also a big problem and represents a significant issue for many. We recently signed up to the United Nations Convention on the Rights of Persons with Disabilities. The convention specifically provides for people with disabilities to live independently in their communities. Proper funding must be provided for housing adaptations and extensions, in tandem with the necessary wrap-around health and social supports which will allow people with disabilities to live independently in their communities. We must give our citizens with disabilities the right to live independently. We want a society that values inclusion, not exclusion.

I thank the Deputies for their contributions to the debate on this important motion relating to disabilities. We recognise that people are living longer and that adults with intellectual disability have age-related illnesses and conditions, with more people with a disability having more complex needs. The late Stephen Hawking said: "My advice to other disabled people would be to concentrate on things your disability doesn't prevent you doing well, and don't regret the things it interferes with. Don't be disabled in spirit as well as physically."

Our national disability inclusion strategy captures a wide range of actions across Government Departments that will impact on the lives of people with disabilities and is to be viewed as a blueprint for an inclusive, accessible and equal country that incorporates issues that affect quality of life, health, education and transport. Underpinning the strategy is a vision of an Irish society in which people with disabilities across their life cycles enjoy equal rights and opportunities to participate in social and cultural life, can work if they want to do so, have choice and control over how they live their lives and can reach their full potential. In modern Ireland our common aspiration must be to accelerate the pace of reform because how we care for our most vulnerable citizens is the true litmus test of our position as a civilised society.

Improving employment outcomes for persons with a disability is a key objective of the Government. The "Make Work Pay for People with Disabilities" report was published last April and made 24 recommendations covering a range of Departments. A number of the report's recommendations have already been implemented. People with a long-term disability payment who move off the payment to get a job now retain their free travel pass for a period of five years. A fast track return to disability allowance is in place for people where employment does not work out. The Department of Employment Affairs and Social Protection is currently engaging in an extensive consultation process with people with disabilities, parents of children with disabilities and sectoral representatives regarding early engagement with people with disabilities on recommendations Nos. 9 and 10 of the report. Today, its officials were in Sligo to hear the views of people with disabilities and their families.

The Government acknowledges the immense contribution made by family and other unpaid carers in ensuring that older people and people with disabilities can continue to live in their own homes and communities and contribute to those communities. This contribution is reflected in our most recent census finding showing that over 195,000 provide at least 6.6 million hours of care per week in Ireland. Last year the Government legislated for the automatic provision of medical cards for persons in receipt of a domiciliary care allowance. This removed the need for approximately 35,000 families providing care for a child with a severe disability to undergo the medical card assessment process.

I will now comment on the loco parentis rule as it relates to the provision of paediatric home care packages for children with complex medical needs. These packages are designed to maximise a child's quality of life and developmental opportunities while also helping to keep children out of hospital as much as possible. It is expected that 584 home care packages will be provided this year, up from 504 in 2017. The nurses and health care assistants who deliver these supports are responsible solely for the clinical care of the child. As such, they cannot assume sole responsibility for a child in the child’s home and, hence, where parents may not be available, they should appoint a designated and competent individual to act in loco parentis. This requirement ensures that a second person will be present in the event of an acute emergency such as respiratory arrest, decannulation of a tracheostomy or status epilepticus. It is important to note that parents are not required to remain with the child and nurse at all times, but they must find and identify an appropriate adult to act in loco parentis if they are unavailable. I stress again that the paediatric home care packages are a clinical support. We all recognise that respite care may also be an issue for some families. The HSE is already looking at respite care as part of the national quality assurance process and this will help to inform a review of the operation of the loco parentis rule by the national steering group for children with complex medical conditions.

The safety and protection of vulnerable people in the care of the State is paramount. The Government's primary concern is that their needs are being prioritised and addressed. More than 3,000 inspections of residential centres for people with disabilities have been conducted by the Health Information and Quality Authority, HIQA, since regulation began in November 2013. This year net non-capital expenditure of €16.269 million has been approved for HIQA, a significant funding increase of 24% on the 2017 funding level. This will facilitate HIQA in advancing work in all areas, including the regulation, inspection and monitoring of all designated centres for people with disabilities.

Accessible transport was raised by some Deputies. There has been increased investment under the national development plan for new major public transport projects and retro-fitting of older public transport infrastructure, which will progress making public transport fully accessible for people with disabilities. The Minister for Transport, Tourism and Sport intends to appoint to the boards of public transport companies under his remit a person with personal experience of the needs and difficulties of people with disabilities using public transport.

In the Department of Health, work is under way on the drafting of new legislation for the introduction of a new transport support scheme to assist those with the most complex disability in meeting their increased mobility costs. The Minister plans to bring his proposals to Government shortly. We also acknowledge the key commitments on disability issues in A Programme for a Partnership Government, including increased participation in society, the movement to personal individualised budgets, and the progress being made by the task force on personalised budgets, which has almost completed its work.

Across Government, in transport, housing, equality, health, employment and social protection, we are working together to ensure that children, young people and adults with a disability have the right to the same life opportunities as anyone else to live satisfying and valued lives. This is the whole-of-Government approach to people with a disability and their families. We want to ensure that these policies, including our national disability inclusive strategy, significantly improve the lives of people with disabilities in a practical sense.

I thank the House for the opportunity to address these issues and for the valuable contributions made by Members to the debate. Speakers referred to the optional protocol to the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. I fully recognise the utility of the optional protocol to the convention in providing a high degree of accountability, and it is my intention to opt in. The convention and the optional protocol cover a broad range of commitments, some of which require substantive cultural change. An analysis of the 14 complaints brought under the optional protocol since 2010 indicates a range of areas we are working hard to address such as the deprivation of liberty and the right of deaf persons to participate in jury duty. It is my intention that the optional protocol will be ratified once we have completed the first reporting cycle under the convention. This will provide us with an opportunity to reflect and prioritise actions to achieve the highest possible level of compliance.

The Minister of State with responsibility for disability issues said at the start that there was an obligation on Government and on this House to provide for the needs, rights and entitlements of people with physical or intellectual disabilities. There is a need for resources for those provisions. The resources for those provisions are also an obligation on the Government. There is an obligation to provide respite care, especially for families most in need in many parts of the State who do not have the necessary respite care. There is an obligation to provide residential services and long-term residential services in congregated settings.

At the back of all of this is the right to equality for all our citizens. I wish to raise the case of four families in my constituency who are in need of a residential service for four adults who attend Ashfield House. These adults are living at home with their ageing parents or with siblings. Each person has very complex care and medical needs, profound intellectual disabilities and physical disabilities. They are in need of ongoing care. This has been a huge struggle for their parents. Gerard is 39 years of age. He had been cared for by his mother and father, and now it is just his mother. Kathleen is 45 years of age. Her mother and father, Marian and Jer, are full-time carers and she is living at home. Colm is 37 years of age and his mother, Ann, cares for him. George is 37 years of age and is cared for by his two sisters, Ann and Saoirse. These families had a meeting with the Minister of State, Deputy Finian McGrath, and the Kerry Deputies. During that meeting we were led to believe that the Minister of State would come to the constituency to ensure there would be full-time residential care for those four people. I am sure this need can be mirrored throughout the State, especially for elderly parents who have spent their entire lives looking after their very dependent children with disabilities as they grow into adulthood. These parents are now coming to the end of their lives and they have no sense of how their loved ones will be cared for after their passing. I understand that the Minister of State, Deputy Finian McGrath, will be coming to the Listowel area in the near future. I hope he, using the resources provided by Government and by the Department, will be able to take away the huge worry of those people and give them some comfort for what remains of their lives.

I compliment Deputy Caoimhghín Ó Caoláin and others who have been so instrumental in bringing this motion to the House. We are discussing the rights of persons with disabilities but I prefer to call them people with different abilities. This is very much what this debate is about. These are people who, unfortunately, have hit different crises in their lives and they find the system is not able to cope with that. I have spoken previously about the need for child and adolescent mental health services, CAMHS, and services for people with intellectual disabilities in my constituency in the north west. There is a huge problem there. It is appalling the way that service has been left in recent years in that part of the State, especially in Sligo. This applies also to autism services. When they get into the system and they look for respite, very often it is not there for families who are trying to deal with these situations.

If we are serious about providing this, it has to be through every organ of the State in which we look after people with different abilities. If we are going to do this through every organ of the State, we need to ensure that the health service is brought up to speed. There is a postcode lottery in the health service. If a person happens to live in the north west, he or she will wait a very long time before getting a service. One obvious example of this is the neurology department in Sligo University Hospital. It is divided into two units, one which looks after patients who have Parkinson's disease, motor neurone disease, multiple sclerosis and so on, and the other which is a surgical neurology unit that mainly looks after people with spinal injuries. There is one senior consultant, one registrar and two senior house officers. They are unable to cope with the demand. The waiting list to be seen is nine or ten months. Even when a person gets into the system, it is very difficult to get an adequate service because the service is so stretched. Clearly, there needs to be investment to ensure the additional staff that are needed in these vital services are recruited. This applies to neurology and all the other services in the State.

We have to understand that every citizen of the State has a right. That right means the Members have the obligation to provide for them. Government has that obligation. This motion is designed to hold the Government to account in this. I hope the Government comes up to the mark.

I welcome the Minister of State's confirmation of support for the motion. He concurs with what I and other Deputies have said on the understanding of what is at the core of the motion. This is all about equality and rights.

The Minister of State, Deputy Jim Daly, however, has also said that there is joined-up Government on these matters. The Minister of State cited instances of interdepartmental co-operation on the needs of people with disabilities, but this does not confirm joined-up Government action on the needs and rights of people with disabilities. This is an absolute requirement.

With regard to the optional protocol to the United Nations Convention on the Rights of Persons with Disabilities, the Minister of State, Deputy Finian McGrath, has said that he intends to secure its ratification once the first reporting cycle under the UNCRPD has passed. This does not represent a definite timeframe. It is vague and uncertain. I put it to the Minister of State, Deputy Finian McGrath, that he may not be in office to see its delivery, so I appeal to him to seize the opportunity when it is within his reach. I also appeal to the Minister of State, Deputy Jim Daly, to be supportive and to ratify the optional protocol now, please, given that the predecessor of the Minister of State, Deputy Finian McGrath, committed to doing it in tandem with the UNCRPD. Any further delay is wholly unacceptable. As I said in my opening remarks, nothing will change what needs to be changed speedier than enforceability. This is what is missing with regard to the convention. Enforceability will help to change everything.

There was no reference whatsoever to the in loco parentis clause in the offering on the record of the Minister of State, Deputy Finian McGrath, or in the section of his address he did not reach.

I acknowledge that the Minister of State, Deputy Jim Daly, addressed it in his contribution. I am very familiar, however, with the wording he employed because it is a formula used in response to parliamentary questions on this matter.

I urge the immediate abolition of what I can only describe as the loco parentis clause on home care nursing supports for very sick children. It is an offensive clause. The people who feel it directly are absolute heroes and deserve the very limited respite that these brief breaks represent for them.

Recently, several applications for the disabled drivers and passengers scheme have been turned down because the vehicle in question was bought under a personal contract plan, PCP. I have tabled parliamentary questions on this and the response I have received is that this matter is being considered. The critical qualification must be the need of the disabled driver and passenger, as the case might be, not the methodology of purchasing the vehicle. I strongly urge the Minister of State to reflect on that need.

The critical areas of legislation to be completed include the decision support service, as promised in the Assisted Decision-Making (Capacity) Act 2015 and the Disability (Miscellaneous Provisions) Bill 2016, which has yet to be presented. I oversaw its pre-legislative scrutiny at the Joint Committee on Justice and Equality. We need to see that presented. It cannot be long-fingered. There needs to be enshrined in legislation in respect of people with disabilities a corresponding entitlement to a service, along with an assessment of need.

I thank my colleague who is a member of the all-party committee on disabilities, Deputy Murphy O'Mahony, for her and her party's support for our motion this evening. I thank all members of all parties and none for their supportive contributions. I was disappointed that the Minister of State, Deputy Finian McGrath, sat alone for 90 minutes of this debate. The Minister of State, Deputy Jim Daly, might like to mention to his party colleagues that a little support and a presence might have given some credibility to his arguments regarding joined-up Government thinking, let alone action.

My last thanks are to all the campaigning and representative organisations who tirelessly work in support of people with disabilities and especially those representatives who attended here this evening. Go raibh míle maith agaibh go léir.

Question put and agreed to.
The Dáil adjourned at 9.55 p.m. until 10.30 a.m. on Wednesday, 28 March 2018.