Tuesday, 19 November 2019
Personal Assistance Service: Motion
That Dáil Éireann: notes that:— in March 2018, Ireland formally ratified the United Nations Convention on the Rights of People with Disabilities (UNCRPD), which under Article 19 states that disabled people have the right to live in the community and have access to a range of in-home and other supports, including personal assistance to support this;acknowledges that:
— personal assistance service is a tool that allows disabled people to live independently, providing individuals with the freedom and flexibility they need to live their lives as they choose;
— independent living means an individual can live with the freedom and control to have the same choices in life that everyone else has in terms of housing, transportation, education and employment;
— with personal assistance services, disabled people are in control and direct the personal assistant to carry out tasks both inside and outside of the home, including personal care, domestic duties, assisting in day-to-day tasks such as shopping, support in the workplace or socialising;
— personal assistants should not be confused with ‘home help’ and do not in essence look after or care for a disabled person;
— there is currently no standardised procedure in Ireland for administrating personal assistance hours;
— in 2017, 84 per cent of those in receipt of personal assistance service received less than three hours a day and 42 per cent of these people were in receipt of between one and five hours a week, an average of 42 minutes a day, despite disability being a 24-hour affair;
— as far back as 1996, it was identified that an average need of ten hours of personal assistance service per person per week could only respond to essential personal care needs, not quality of life requirements, and it would certainly not enable full active participation in the community;
— 30 years on, the independent living movement in Ireland continues to strive for full independent living on behalf of disabled people advocating for choice and control over their lives and full participation in society as equal citizens; and
— a right to a personal assistance service for disabled people is fundamental to achieving that vision, however, currently there is no right to personal assistance in Ireland;— no specific reference was made for independent living in Budget 2020;calls on the Government to:
— while extra home help hours is a welcome development, by focusing on home help hours over personal assistance, many disabled people are prevented from living independently in any real meaningful way;
— Sweden has long been regarded as the ground-breaking country and ‘gold standard’ for personal assistance services, and that it remains the only European country which legally confers a right to personal assistance services, and one Ireland must aspire towards in order to achieve a rights-based provision of personal assistance here; and
— legislation to some extent exists in many countries, including Denmark, France, Germany, Latvia, Norway, Serbia, Slovakia, Spain and the United Kingdom;— consult closely with disabled people and their representative organisations in policy development as enshrined in Article 4.3 of the UNCRPD which states that ‘In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.’;requests the Dáil to legislate to provide for the establishment of a Commissioner for Independent Living within the Department of Employment Affairs and Social Protection tasked with the following functions:
— engage effectively with the current review of the National Disability Inclusion Strategy 2017-2021, particularly actions No. 69-71 which are nominally about independent living to ‘achieve maximum independence’ for disabled people in Ireland; and
— sign and implement the Optional Protocol of the UNCRPD to commit to expenditure on disability services like personal assistance; and— to consult with a disabled persons’ organisation as defined by the UNCRPD to devise a universally accepted definition of the personal assistance service in Ireland and address the chronic lack of understanding of the term ‘personal assistance service’ which has led to inconsistencies in standards and quality of service provision across all Health Service Executive (HSE) areas;
— to facilitate the separation of the personal assistance service from home help hours and home care and develop a strategy to oversee the transition of personal assistance service to come under the remit of the Department of Employment Affairs and Social Protection from the Department of Health, recognising personal assistance not as a health issue but as a State service under the purview of the Commissioner for Independent Living;
— to seek an end to the practice of assigning home help hours to disabled people instead of a personal assistance service;
— to ensure individuals do not end up with a service that does not support independent living as per the personal assistance model of service and risk individuals being help hours instead;
— to establish a roadmap towards the provision of ring-fenced funding for personal assistance services to facilitate the continued investment of independent living supports in Ireland;
— to introduce a single standard assessment of need across all HSE Community Healthcare Organisation (CHO) areas, which must include the provision and support for independent assessment of need as per the Disability Act 2005, and the creation of systems that allow for portability of services across CHO areas, meeting the social, personal and employment needs of those who avail of the personal assistance service, with no bureaucratic barriers;
— to ensure that all those who could benefit are made aware of the personal assistance service in order that those who wish to live their lives independently can access the necessary supports to do so;
— to ensure that policy regarding independent living includes a comprehensive assessment of the individual’s needs to determine the amount of personal assistance an individual will receive in order that they live full and active lives in education, employment and society; and
— to ensure that any new legislation or Government policy on independent living conveys the right to access a personal assistance service in this country so that disabled people have choice, control and freedom to participate in society as equals.
I thank the Leas-Cheann Comhairle for facilitating this most important debate on the right to a personal assistance service in Ireland, a right that currently does not exist. I am proposing a motion because, after attempting to introduce legislation to the effect of putting the right to a personal assistance service on a statutory footing, it was ruled out of order under Standing Order 179 due to "significant costs" to the Exchequer. This meant that I could not even initiate the Bill. I then worked with the Independent Living Movement Ireland, ILMI, to draft a motion calling for the Dáil to legislate to provide for the establishment of a commissioner for independent living within the Department of Employment Affairs and Social Protection tasked with various functions, including overseeing the realisation of the right to a personal assistance service over time in a sustainable and cost-effective manner.
The flexibility of this motion is not for the ease of the Government to walk away from its commitments, but for all of us in the House to work together and legislate for the establishment of an office tasked with providing a roadmap for the development of a personal assistance service that is fit for purpose and puts centre stage the right to live independently and as equals in society regardless of disability.
To clarify, the motion is calling for the establishment of a commission for independent living, with limited costs imposed on the Exchequer, tasked with the following functions: to consult a disabled persons' organisation as defined by the UN Convention on the Rights of Persons with Disabilities, UNCRPD, on devising a universally accepted definition of a personal assistance service and addressing the chronic lack of understanding of the term "personal assistance service", which has led to inconsistencies in standards and quality of service provision across all HSE areas; to facilitate the separation of the personal assistance service from home help hours and home care and develop a strategy to oversee the transition of the service to the remit of the Department of Employment Affairs and Social Protection from the Department of Health, recognising personal assistance not as a health issue, but as a public service under the purview of the commissioner for independent living; to seek to end the practice of assigning home help hours to disabled people instead of a personal assistance service; to ensure individuals do not end up with a service that does not support independent living as per the personal assistance model of service and remove the risk of individuals being taken off of waiting lists for personal assistance services when accepting home help hours instead; to establish a roadmap towards the provision of ring-fenced funding for personal assistance services to facilitate the continued investment in independent living supports; and to introduce a single standard assessment of need across all HSE community healthcare organisation, CHO, areas. This function must include the provision and support for independent assessment of need, AON, as per the Disability Act 2005 and the creation of systems that allow for portability of services across CHO areas, meeting the social, personal and employment needs of those who avail of the personal assistance service with no bureaucratic barriers. The commission would also be tasked with ensuring that all those who could benefit were made aware of the personal assistance service in order that those who wished to live their lives independently could access the necessary supports to do so, and that policy regarding independent living included a comprehensive assessment of the individual's needs to determine the amount of personal assistance an individual would receive to live a full and active life in education, employment and society.
It would do us some good to acknowledge that society disables a person, not the disability itself. We must took at disabilities from the perspective of those who have one if we are to address the barriers facing disabled people in society. We must look at ourselves to see what barriers we have created, how these have affected disabled people and how we can dismantle them as architects of this unequal society. Only then can disabled people have more independence, choice and control over their lives and live independently the way we do as able-bodied individuals, which we so often take for granted.
For this reason, I am using the preferred term "disabled people", which I know has confused some people. It is a term developed by disabled people that recognises the social model of disability and acknowledges that the barriers we have put in place have prevented disabled people from living full and active lives as equals in society. The motion was drafted and developed by disabled people, and it is their view that must be at the forefront of all contributions that will be made this evening. I thank all speakers in advance for their contributions.
In March 2018, Ireland formally ratified the UNCRPD. Under Article 19, disabled people have the right to live in the community and have access to a range of in-home and other supports, including personal assistance, to support this. Pioneered by the Centres for Independent Living, the personal assistance service involves the employment of personal assistants by people with physical disabilities to enable them to live as independently as possible. The philosophy of independent living that underpins the personal assistance service is about promoting choice and independence for the person with the disability, known as the leader. With a personal assistance service, disabled people are in control and direct the personal assistant to carry out tasks both inside and outside of the home, including personal care, domestic duties and assisting in day-to-day tasks such as shopping, support in the workplace and socialising.
While a personal assistance service currently exists in Ireland, it is chronically underfunded, inconsistent and incomplete, restricting the lives of many disabled people and their desire for independent living. Disabled people have been witnesses to the incremental destruction of medical services for people with disabilities through years of austerity cuts, the ongoing recruitment and retention crisis in the HSE, not to mention the "non-embargo" embargo, and a gradual shift away from statutory provision of services towards an outsourcing model of service provision. Many thousands of people have access to a personal assistance service, yet many more remain without. It is useful to point out that only 0.3% of disabled people get a service. For those who do, it remains limited and access is restricted due to lack of funding. According to the Disability Federation of Ireland, DFI, there has been no additional funding for personal assistance services since 2008 and people who are on waiting lists must wait for a person to die before they can get new hours. Those hours in turn are often spread across a number of different people, thinly applying the service to recipients.
Between 2010 and 2017, there was a drop of more than 5% in the numbers in receipt of a personal assistance service and home supports combined. According to the HSE, 1.51 million service hours were delivered to 2,470 people in 2017. However, 84.44% of all leaders in receipt of a personal assistance service received less than three hours per day on average, with 44.41% of leaders in receipt of 42 minutes per day on average despite disability being a 24-hour affair. It is clear that anyone who receives an average of 42 minutes per day is not going to be able to live independently, access education or employment or become involved in meaningful social engagement. Disabled people with reduced services of this nature will become trapped in their own homes without the chance to interact and will be prone to isolation and depression.
Currently, only 5% of the HSE's disability budget goes on personal assistance and home support services. Meanwhile, 85% of the budget is spent on residential and day services. This needs to be flipped on its head. It is costing the State more to keep someone in an institution as opposed to proving a personal assistance service so that disabled people can work and engage in society. Research in Sweden shows that the cost of a placement for an individual with extensive functional impairments in a group home often exceeds the cost of personal assistance, not taking into account the personal benefits for a disabled person able to participate in society with greater flexibility and freedom of choice.
There are significant constraints on the current personal assistance service. Delivering services is often oppressive and tied to the medical model approach as opposed to a needs basis. Those in need of personal assistance support often find the application process problematic, as there is no standardised procedure and those in receipt of this support do not have any security regarding the continuation or extent of their service due to a lack of legislative protection. A chronic lack of understanding of the term "personal assistance service" is pervasive in the HSE and has led to inconsistencies in the standards and quality of service provision across all HSE areas.
For instance, the practice of assigning home help hours to disabled people instead of a personal assistance service continues today. Furthermore, individuals are also at risk of being removed from waiting lists for personal assistance services when they accept home help hours instead. Services are only offered during certain hours, on a rigid schedule, or in time slots of less than an hour. These restrictions mean the person only receives enough time to get up, get washed and dressed which is, in essence, a home support service rather than a service that supports and enables independent living.
As far back as 1996, it was recognised that an average of ten hours of personal assistance per person per week could only respond to essential personal care needs, not quality of life requirements and it would certainly not enable full active participation in the community. More than 30 years later, ILMI continues to strive for full independent living on behalf of disabled people, advocating for choice and control over their lives and full participation in society as equal citizens. A right to a personal assistance service for disabled people is fundamental to achieving that vision but currently there is no such right in Ireland. I urge everyone in the House to provide for this rights-based agenda, support the motion and make this a watershed day in the pursuit of rights for and by disabled people in Ireland.
I am delighted to speak on the motion. The Minister of State will be aware that there has been a long struggle by constituents in Dublin Bay North for the recognition of a personal assistance service, supported by the appropriate funding. He will recall, as I do, Mr. Martin Naughton of Connemara and Baldoyle and his lifelong campaign for disability rights. He did groundbreaking work with Áiseanna Tacaíochta, the Irish Wheelchair Association, IWA, and the Muscular Dystrophy Association, MDA. He was integral to the establishment of the first centre for independent living in Ireland and was involved in the DFI. Sadly, he died in October 2016 aged just 62. I had the pleasure of meeting him at the North Dublin Disability Forum event on 29 of March 2016, some months before his death. Martin’s struggle goes on. Tonight we are renewing his campaign and asking for definitive steps to be taken to ensure that this service is provided to all of our citizens with disabilities. The fight is continued now by excellent advocates such as Ms Shelly Gaynor, Mr. James Cawley, Ms Joan Carthy, the IWA, ILMI, DFI and others. Members may have read James Cawley’s opinion piece in The Journal last Saturday where he spoke about personal assistance being the "difference between existing and living".
Personal assistants are not carers and the service should not be conflated with home help or care providers. People with disabilities who are in receipt of the personal assistance service have described in informative and moving briefings in the audiovisual room on Leinster House how their personal assistants are their "limbs". Their personal assistants are there to assist them with everyday things such as household chores, travel, work and parenting. They assist them in living their lives which must be the ultimate objective. Sadly, on this Government's watch, only 1.6 million personal assistance hours were delivered to 2,535 people in 2018 and 1.5 million hours were delivered to 2,470 people in 2017. HSE data on the 2017 figures show that 85% of the people in receipt of a personal assistance service on average received under three hours per day, with 45%% only receiving on average 42 minutes per day. The Minister of State has delivered 42 minutes per day. That is the reality of his record in the Department of Health. Is it fair that some citizens in Ireland are only allowed have use of their "limbs" for 42 minutes per day? It is atrocious to think that people who want this service are not receiving enough time each day for it to make a material difference to their lives, allowing them to work, study, train or raise a family, to use computers and to contribute to our society.
Our motion calls on the Government to closely consult citizens with disabilities and the disability advocacy organisations on policy development as outlined in Article 4.3 of the UNCRPD, which we ratified in March of 2018. The convention states: "States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations." We are asking the Government to engage with the review being undertaken of the National Disability Inclusion Strategy 2017-2021. Actions No. 69 to 71, inclusive, of the strategy relate to independent living and the aim of achieving "maximum independence" for disabled people in Ireland. The Minister of State has a deep interest in this issue and every time we have an opportunity to discuss it, I ask him to ensure that the Government signs and implements the optional protocol of the UNCRPD to commit to expenditure on disability services like personal assistance. This is something that many of us on these benches have been calling for since ratification of the convention. Without the right to complain about the lack of services and, therefore, have the Government do something about it, the ratification of the convention was nothing more than a public relations exercise. The Government is not delivering.
In essence, our motion recognises that we desperately need a commissioner for independent living to be established within the Department of Social Protection who is tasked with consulting advocacy organisations to define a personal assistance service in Ireland. That commissioner should also be tasked with facilitating the separation of the personal assistance service from home help; establishing a roadmap towards the provision of ring-fenced funding for personal assistance services; introducing a single standard assessment of need across all HSE CHO areas; and ensuring that any new legislation or Government policy on independent living conveys the right to access a personal assistance service in this country so that disabled people have choice, control and freedom to participate in society as equals.
I was informed by the Minister of State on 15 January 2019 that no additional funding was provided in budget 2019 for personal assistant hours. However, he also said that the HSE's national service plan aims to provide 1.63 million hours of personal assistance to almost 2,500 people. It was amazing to learn that the HSE was going to magically provide 170,000 more personal assistance hours even though the Minister of State did not ensure, during pre-budget discussions, that more funding would be provided for personal assistance services. It was the outstanding Ms Joan Carthy, advocacy officer with the IWA who brought this anomaly to my attention following the announcement of budget 2019 and we set about trying to get some answers from the Department and the HSE. The statistics on the number of personal assistance hours provided since 2013 are disappointing, given the number of people in need of the service. Dr. Cathal Morgan has replied to me directly in response to various parliamentary questions submitted to the Department of Health. In one such reply he said "the level of service delivered is varied to ensure that each client’s needs are reflected .. there is no average agreed number of PA hours per person". However, he went on to say that "it is recognised that many would benefit from more support hours".That has to be one of the understatements of the century. In a different reply, Dr. Morgan confirmed that sometimes hours will be taken away from one person to provide hours to another person because the resources for the personal assistance service are "finite". That is a very important but disappointing word and is key to how this Government operates in the context of disability services. Research as far back as 1996 showed that an average of ten hours per week would only respond to personal care needs and not to improving quality of life or full participation in society.
The Minister of State said in response to a parliamentary question that the personal assistance service provided by the HSE adheres to the principles laid out in Article 19 of the UNCRPD. Disappointingly, he ended his reply by saying that he had "no plansfor legislation governing the rights, entitlements and operations associated with this service". Has he not read the excellent literature and evidence-based research provided by the advocacy groups? ILMI has worked with the Centre for Disability Law and Policy in NUI Galway on extensive research around international best practice on this matter.
The research examined four options to achieve a right to personal assistance in Ireland, including stand-alone legislation; a comprehensive right to community care and support; legislation for personalised budgets; and the commencement of the Disability Act 2005. The overall recommendation was to follow Sweden, as Deputy Pringle has said, as an exemplar of personal assistance services in Europe and the world and to introduce stand-alone legislation. The research also stated significant work on eligibility, scope, access and use would need to be completed to ensure the legislation was fit for purpose, fully inclusive and accessible and not just another set of promises that have not been delivered on.
I did not get a chance to talk about the opportunities for work and education for citizens with a disability but it is very disappointing when one looks at statistics that, for example, in the country reports, Ireland has one of the lowest rates of employment for people with a disability in the EU and one of the highest rates of poverty for citizens with a disability. This is all, unfortunately, happening on the Minister of State's watch.
I welcome Fianna Fáil's support for our motion and I thank Ms Jodie Neary, a parliamentary assistant in Deputy Pringle's office, for the outstanding work she has done on it. I look forward to the debate, I hope we can move forward on this important equality and human rights issue, and I hope a properly resourced personal assistance service will be a core pillar of Ireland's social policy as we move into the future.
I thank the Deputies for tabling this motion I welcome the opportunity to restate this Government's commitment to supporting people with disabilities and their families and I confirm we will not oppose this motion. I welcome to the Gallery those involved in the disability organisations and those looking in tonight, many of whom I know well. I would like to acknowledge the work of the ILMI and its consistent work in trying to bring about positive changes for people with disabilities across society.
I attended the Clare Leader Forum conference in Ennis last month where we discussed the positive impact on the lives of people with disabilities and their families since the Disability Act 2005 was commenced. People with disabilities should be allowed to live an independent life of their own choosing, the same as any other person, and that is consistent with Transforming Lives, our disability reform policy.
I would like to address the points raised in this motion, and outline to the House work under way across all the different Departments. As Minister of State at the Departments of Social Protection, Justice and Equality and Health with special responsibility for disabilities, I am committed to providing services and supports that meet the needs of people with disabilities. These services and supports will empower them to live independent lives; provide greater independence in accessing the services they choose and; enhance their ability to tailor the supports required to meet their needs and plan their lives. This is Government policy and this is what I believe in. At the heart of this policy are the principles of access to mainstream services and community living. Disability is not a health issue, nor is it a transport issue, or an employment issue; it is an equality issue. We have had a whole-of-Government approach to disability for a number of years. The Department of Justice and Equality is the lead Department for policy co-ordination on disability and equality. Ireland ratified the UNCRPD on 19 April 2018 and I was the person who drove that ratification.
Work is now being undertaken within that context to improve access for people with disabilities to essential services and opportunities. The national disability inclusion strategy, NDIS, contains a commitment to a mid-term review, which the Department of Justice and Equality is currently undertaking. Policy on disability is being advanced within the framework of the NDIS 2017-2021, based on an all-of-Government approach broadly around eight key themes, including ensuring equality; choice; the provision of services; accommodation; health; employment; transport and; education. The NDIS provides a mechanism for joined-up working to deliver on Ireland's commitments to implementing the UNCRPD. The NDIS steering group, which oversees and monitors the implementation of the strategy, has an important role in guiding progress in this area. This group is committed to carrying out a mid-term review of the strategy by the end of this year and I emphasise this includes a number of consultations with organisations representing persons with disabilities and with persons with disabilities and their families. A refocused strategy for 2020 and 2021 will set out the policy priorities being sought by people with disabilities as well as the actions needed to enable Ireland to continue the progressive realisation of the UNCRPD.
The Government is working towards signing the optional protocol, including work to progress the required legislation, and the first national report on the convention is due to be completed in mid-2020. The Department of Employment Affairs and Social Protection, as well as providing income supports to people with disabilities, offers a range of employment support programmes, including the wage subsidy scheme, the EmployAbility Service and the partial capacity benefit scheme. The Intreo service is also available to provide employment support services for people with disabilities who wish to engage with the service on a voluntary basis. Action is currently focusing on improving the transitions for people with disabilities into education, training and employment. A collaborative project between the Departments of Employment Affairs and Social Protection, Justice and Equality, Education and Skills, and Health and the HSE is currently being developed, which will focus on supporting young persons with disabilities from second level education into further education, training and employment. Work is also being undertaken to raise awareness and to engage employers on employing people with disabilities.
Turning to health-funded services, I acknowledge the motion is correct that there is no inherent right to personal assistance or, indeed, to any other health services in Ireland. Let me explain why this is. Under the Health Act 1970, as amended, the eligibility framework places an obligation on the HSE to make a range of services available to people, rather than conferring on them an absolute entitlement to access such services. Section 7 of the Health Act 2004 states "The object of the Executive is to use the resources available to it in the most beneficial, effective and efficient manner to improve, promote and protect the health and welfare of the public." In short, our legislation does not confer a right to particular services. Instead, persons have eligibility to access services while there is a finite budget the HSE allocates to best fit the needs of the population as a whole.
I am delighted to confirm the overall budget for health-funded specialist disability services in 2020 is in excess of €2 billion. This is an increase of more than €490 million since 2016 on my watch. The increased funding in 2020 will enable the health services to continue to provide a broad range of services aimed at improving the quality of life of people with disabilities and their families. The policy is to provide person-centred services based on need rather than diagnosis.
Let me explain how these personal assistance services are allocated. They are accessed through an application process or through referrals from public health nurses or other community-based staff. Individual needs are evaluated against the criteria for prioritisation for the particular services and then decisions are made on the allocation of resources. Resource allocation is determined by the needs of the individual, compliance with the prioritisation criteria and the level of resources available. The HSE provides a range of assisted living services, including personal assistant and home support services, to support individuals to maximise their capacity to live full and independent lives. From December 2018, the medical card earnings disregard for a person in receipt of disability allowance was significantly increased from €120 to €427 per week. Since 2018, medical cards have been automatically provided to persons in receipt of a domiciliary care allowance and that has happened on my watch. This benefited 35,000 families providing care for a child with a severe disability to forgo the medical card assessment process. The Department of Health is currently engaged in detailed work to develop plans for a new statutory funding scheme and a system of regulation for home care services.
The motion raises concerns regarding consistency of access. The HSE and I are committed to introducing a standardised assessment process to identify and assess the needs of people with disabilities. Work is ongoing at the HSE to select an IT-based single assessment tool, which will ensure consistency of assessments nationally. The Government is committed to protecting the level of personal assistance services and home support services available to persons with disabilities. In 2018, 1.63 million hours of personal assistance were provided to more than 2,500 people with a disability, which is more than 122,000 additional hours and 65 more individuals serviced than in 2017, a fifth consecutive annual increase. At the end of the first half of 2019, 824,467 personal assistance hours had been delivered to 2,550 people with disabilities. Personal assistance services and home supports are closely linked, given that many service users require both home support services and personal assistance. In 2018, the State provided 2.93 million hours of home support to adults and children with a disability, an increase of 180,000 hours on the 2017 target.
In my tenure as Minister of State with special responsibility for disabilities, I have sought to ensure that a greater number of people are given more personal assistance hours. In that short time, there has been an increase of more than 100 in the number of people receiving personal assistance services and there have been 129,365 additional personal assistance hours per year for people with disabilities. I am acutely aware of the value of personal assistance services to people's lives. It can often be the final piece in the jigsaw towards living a full, independent life. In my time as Minister of State, I have striven to increase the figures, and I will continue to do so to meet the increasing demand and to allow people with disabilities live fuller, more independent lives of their choosing.
I welcome the opportunity to speak to the motion and compliment Deputy Pringle and the Independents 4 Change on bringing it forward. I also compliment and recognise the role of ILMI in the campaign and in bringing forward the motion, and I acknowledge the presence of its representatives in the Public Gallery.
The importance of personal assistance in the lives of people with disabilities cannot be overestimated and it is almost impossible for some people to realise how difficult life can be for them. Fianna Fáil believes we must support people with disabilities to have more fulfilling lives and careers, and personal assistance hours are important in this regard. They are a crucial way to allow people with disabilities to enjoy equal and independent lives in the same way as others. We propose at least a doubling of the 1.5 million hours over the next five years. In that context, we are happy to support the aims of the motion.
Whenever I table parliamentary questions on the provision of personal assistance hours, they are referred to the HSE, which always replies that the need for increased services is acknowledged. The HSE has indicated that no additional funding has been provided for personal assistance and home support services since 2008, and as a result, waiting lists are not maintained as a matter of course. Nevertheless, the HSE provides information gleaned from the Health Research Board's planning analysis through databases for people with disabilities and, in line with the information available from the national disability database, reports that 291 people are listed as awaiting personal assistance services. It qualifies the figure, however, by pointing out that registration on the national disability database is mandatory and it is possible there is under-reporting of the need.
The increase in personal assistance support over the past five years has been modest, to say the least. In 2014, some 1.3 million personal assistance hours were provided to 2,186 people, an average of 603 hours per year, or 11.5 hours per week. For 2019, the HSE target was 1.63 million hours to 2,535 people, which is 642 hours per person per year, or just over 12 hours per week, the same as the upturn in 2018. According to the ILMI, however, a total of 84.44% of those who receive the personal assistance service receive less than three hours per day on average, with 44.41% in receipt of an average of 42 minutes per day. Everyone has to agree that anyone who receives an average of 42 minutes per day will not be able to live independently, access education or employment, or become involved in meaningful social engagement. People with disabilities who are subject to reduced services of this nature will become imprisoned in their homes, without the opportunity to interact, and may become prone to isolation and depression. With personal assistance services, people with disabilities get to be in control and direct the personal assistant to carry out tasks both inside and outside the home, including personal care, domestic duties, assisting in day-to-day tasks such as shopping, support in the workplace, or socialising.
A good point made in the debate was that a unique benefit of personal assistance services is that they diminish dependence on family and friends. The confidential relationship that develops between people with disabilities and their personal assistants enables disabled people to maintain a private life and their dignity. Personal assistants enable the transformation from existing to living, which is why they are so important.
It is welcome that the Government will not oppose the motion, although whether it will lead to more positive action remains to be seen. I will certainly seek action. There needs to be a decent increase in personal assistance hours in the 2020 HSE service plan, which would be welcome. I commend the motion and hope for action.
I, too, welcome the visitors to the Public Gallery, as well as Senator Dolan, who has done tremendous work for people with disabilities during his time as an Oireachtas Member. The importance of personal assistance in the lives of people with disabilities cannot be overestimated and it is almost impossible for people to realise how difficult life can be for them. Fianna Fáil believes we must support them to have more fulfilling lives and careers, and personal assistance hours are important in this regard. They are a crucial way to allow people with disabilities to enjoy equal and independent lives in the same way as others. We propose at least a doubling of the 1.5 million hours over the next five years. In that context, we are happy to support the aims of the motion.
The service of a personal assistant is indispensable for many people with disabilities if they are to pursue high-quality lives in society. Moreover, the service within the HSE's disability programme reflects the modern approach to disability, embodying independent living and participation. The ILMI has been a critical part of the broader movement for disability rights. Its ethos is predicated on the principle that people with disabilities, including the most severe disabilities, should have the choice to live in their home and to participate in their community. The provision of personal assistance services is essential in facilitating an individual to manage his or her personal care, keep a home, have a job, go to school and otherwise participate in the life of the community. The HSE provides a range of assisted living services, including personal assistance and home support services, to support individuals to maximise their capacity to live full and independent lives. Personal assistance and home support services are provided either directly by the HSE or through a range of voluntary service providers. The majority of specialised ability provision - 80% - is delivered through non-statutory sector service providers.
Deputy Murphy O'Mahony outlined figures that represent the lack of resources devoted to people with disabilities. I will not repeat them but I reiterate that anyone who receives an average of 42 minutes in personal assistance per day will not be able to live independently, access education or employment, or become involved in meaningful social engagement.
We have to provide more resources and it is our duty to do so. I am happy to support this motion.
I wish to take this opportunity to thank Deputy Pringle and others for bringing this important motion to the House. I am very familiar with the issue of personal assistance and its importance to the lives of people with disabilities. I am in this position because of a very strong advocacy group that has existed in County Clare for many years. This very strong and active advocacy group, which I still refer to as the Disabled People of Clare but which has now morphed into the Independent Living Group, is very much part of the national forum. It is a wonderful group of people which campaigned as far back as 1992 to advance the lives of people with disabilities. I think of people like Ann Marie Flanagan, Dermot Hayes, Thomas Connole and my friend, the late Tom King, who put such a huge effort into advancing the cause of people with disabilities and who campaigned to demand personal assistance hours. It would be wrong not to mention the late Martin Naughton, who spent many days and nights in Clare and was a national figure in this regard. We owe a huge debt of gratitude to those who advanced this cause under the banner of the Centre for Independent Living long before it became fashionable to talk about the issue in this House.
Personal assistance hours are an essential component of the services required by people with a disability. It is about equality, respect and dignity. It is about a basic human right for people with a disability. People with a disability are not different but their needs and the services they require are different. To ensure equality in a civilised, mature and modern society, we need to provide appropriate funding for personal assistance hours.
My party has advanced a proposal to double the number of hours over the next five years, which is something we have to strive for and achieve. It is not just about agreeing a motion; rather, it is about signing up to that principle now. I would like to see us, as a Parliament, go further than that over the intervening years. We have demand-led services in this country, and I cannot think of anything more important than the provision of personal assistance hours on a demand led-basis. While I accept the financial constraints, if we can double the amount of hours available over the next five years we will have done a lot. However, we should not be prepared to sit on our hands thereafter.
We need short, medium and long-term goals. A medium-term goal for me would be to bring personal assistance hours into a demand-led service. We cannot have situations like that to which our party's spokesperson on disability referred, where hundreds of people are waiting. What are they waiting for? Are they waiting for somebody to die before they get hours? That is not acceptable.
In the past couple of days we have spent a lot of time talking about a Supreme Court case concerning privacy and dignity for people who are in prison and the services available to them. What about privacy and dignity for people with a disability who are attempting to live in their own homes, work and socialise? If we are serious about providing equality in society for people with disabilities we will advance this case exceptionally quickly.
I would also like to join in the praise for Independents 4 Change for bringing forward this motion. When the independent living movement started, the idea of a personal assistance was quite clear, that is, to give people with disabilities the freedom to live their lives to the full, whether that involved employment, moving around or generally living as best as they could compared to those without a disability. It was said recently that we are moving away from that to a system focused on compliance, regulation and bureaucracy, and that is all too true. The concept of personal assistance was not about help for less than one hour per day.
When I was in what was then the Department of Social Protection, the chief medical officer was adamant about one thing, namely, that if those with a disability were deprived of the opportunity to get involved in employment, they would face significant negative health effects that could only be remedied by giving them the opportunity to gain employment. It was for that reason that we introduced the partial capacity legislation, which allowed people to keep their invalidity pensions while still going to work. Not allowing someone with a disability to go to work due to a lack of personal assistance hours is locking them out from the ability to live a full life. Some others will not be able to get employment but still want to live a full social life. Significant damage is being caused to people who are unable to do that.
I listened carefully to what the Minister of State said. One of the disappointing things is what the Government does with most good proposals made in here at present. It is like playing handball against a haystack. The Government does not disagree with anything but the Minister of State did not say what it was going to do to address this issue. I listened to his speech very carefully. Can he tell us about the commitment to providing personal assistance hours? I do not want to hear about the millions and billions being thrown around because that does not address the problems for those with a disability.
I thank the Independents 4 Change for bringing forward the motion and our spokesperson for sharing time. I will discuss the practicalities of this issue. The Minister of State's office and mine have communicated very well for the past number of weeks and months about this issue.
There is an issue in my local community healthcare organisation, CHO 2, at present and I know of six patients in Merlin Park, one of whom was discharged in the past two weeks and was fortunate enough to get personal assistance hours. Five other patients who have acquired conditions over the past number of weeks and months cannot be discharged because their medical practitioners have asked about the allocated hours required for them. One woman cannot be discharged because she requires 47 hours of personal assistance.
Age is an important issue that we need to discuss. Those aged under 65 years who have had an acquired brain injury, a farm accident or a life-altering experience are not acknowledged in any way on a statutory footing. They have to wait for services. The six patients I mentioned who have been left in Merlin Park are all aged under 65 years and have families at home. One woman has waited six months to be discharged. She has four young children under 15 years of age and all she wanted to do was to be at home and to have a couple of hours in which she could witness her children going to school in the morning. She was denied that because the funding basis could not be found for her. The same is the case for the other five patients I mentioned.
It costs €800 a day to keep a person in a bed in Merlin Park. Given the amount of money spent over seven days and whatever number of weeks, personal assistance hours could be provided on an annual basis for five people for an entire year if the sums were done correctly. I ask the Minister of State and his Department to review the cases of the 291 people affected because behind each number, there is a family and situation which we are being prevented from addressing.
I thank Deputy Pringle and his group for bringing forward the motion. I welcome the visitors to the Gallery. This is a very important motion. A whole raft of issues around it need to be discussed. Deputy Rabbitte referred to a whole-of-government approach to this issue. She mentioned the amount of money being spent on people who could live independently if personal assistance hours, home help hours or home care packages were provided for them, compared to what it costs the State to keep them in long-stay beds or community settings. They would love to be living at home and their families would love if they could live in what would be called home.
Many community initiatives have built sheltered housing, as it is known, and nearly every community in Ireland has some. Some people, however, are unable to get personal assistance to allow them live in those community settings. For all the fine words uttered during this discussion, on medical cards and everything else, if we are to be serious about people with disabilities and integrating them into communities as much as is humanly possible in a style of daily life they can undertake themselves, the issue of personal assistance has to be a priority. Each time we go to the Departmental and the HSE looking for funding, there always seems to be a block and no funding is available.
In recent weeks, I have had a situation where we were trying to get somebody home from Dún Laoghaire. We have been told, categorically, that there is no mechanism to fund that at present. That is not good enough. If one looks at what maintaining a person in a high-dependency unit like Dún Laoghaire costs the State, it would be a fraction of the cost to provide personal assistance or a home care package to person. If we are going to be serious about the content and spirit of this motion, which has the agreement of the entire House, a whole-of-government approach must be taken and there must be an examination of how much money is being put into different pockets. The word used by someone administering the funds was "silos", as opposed to there being cross-funding.
Many of us are involved in trying to get personal assistants for people. When they start working with those people, the resulting confidence is noticeable. Some people have been able to engage in employment and others have gone back to education, including night courses, and have benefited enormously, as have their families and communities. We as a nation have also benefited. The Government, therefore, needs to look at the personal assistance scheme and ensure proper funding is in place. It must also be ascertained that money is not being spent unwisely in trying to keep people long-term in institutions, when a fraction of the cost would encourage and enable people to live at home.
I am sharing time with Deputy Ellis. I welcome this Private Members' motion and commend those who tabled it. I also welcome the representatives from the Independent Living Movement Ireland to the Visitors' Gallery, especially Shelly, James and Damien, whom I know personally.
The Oireachtas disability group, of which I am the vice chair, has been enhanced by the coming on board of the Independent Living Movement Ireland in recent months. I very much welcome its participation. In December of last year, a comprehensive guide to the legal rights of people with disabilities was launched by the Independent Living Movement Ireland in co-operation with the free legal aid centres. The guide was authored by Anna O'Duffy. Initiatives such as this have helped inform the debate on independent living, what it is and what is required. We are talking about the right of people living with a disability to live independently. It also helped frame all of this in the language of rights and, disappointingly, in terms of rights still denied.
I commend, in particular, the focus of tonight's motion on differentiating between home help and home care provision and personal assistance provision. The ability to independently control and organise one's life is essential to restoring dignity and hope to those living with a disability. I am worried, however, that the Government simply does not understand this important distinction or worse still, does not place appropriate value on it. The decision in July to stop the rehabilitative training allowance, RTA, showed what little value the Government places on such payments, given the meagre saving to the Exchequer that came with its scrapping. How are we to have any confidence that the Government values and will protect the right of those with a disability to live independently, if months later the RTA has still not been restored and we have no details on the training and other opportunities that were meant to take its place?
We also need to remind the Government this evening that the modest demands contained in this motion are not new. They do not represent a new ask or asks of the Government and this motion should not come as a surprise. On foot of the signing of the UN Convention on the Rights of Persons with Disabilities, UNCRPD, in March of last year and with the associated optional protocol still to be ratified, some of us knew that this act of empowerment would require resourcing, primarily through personal budgets and the employment of personal assistants directly by disabled people to allow them to carry out tasks that their disabilities will not allow them to do independently. It is an indictment of the way the Government goes about its business that it deals with disability issues in a less than thoughtful way. Opposition voices are required to submit endless parliamentary questions and table, as has happened tonight, substantial Private Members' motions in an effort to secure provisions that should have come into effect once the main announcement was made, or shortly afterwards.
When the Minister of State responds to this debate, therefore, I ask him to approach this subject from the point of view of rights. He spoke about equality earlier, and this absolutely is about that, but it is also a matter of rights. That is how equality is upheld. This summer, I tabled a parliamentary question asking for figures on those waiting on a personal assistance service and the cost associated with providing an additional 500,000 extra hours. I was surprised to read in the response that "The need for increased services is acknowledged and the HSE continues to work with agencies to explore various ways of responding to this need in line with the budget available".
This type of language is totally incompatible with the change in attitude required when addressing the rights of people with disabilities, and which was promised in March of last year. Also, in December of last year, I hosted an information session in the Oireachtas audiovisual room. Mr. James Cawley and Ms Shelly Gaynor of the Independent Living Movement Ireland made a presentation outlining how personal assistance services have transformed the lives of those who have received them. At the weekend, in Derry, I addressed our party's Ard-Fheis and impressed upon the delegates the need to be ever vigilant, mindful that Government promises and even declared policy regarding people with disabilities, while featuring in headline Government announcements, do not always receive the required resourcing in the expected time that follows. For example, nearly two years after legal effect was given to the official recognition of Irish Sign Language, we still have not seen the required resourcing for its full and anticipated promotion and development.
We need to see rights made real. For this to happen, however, provision and resourcing must go hand in hand with announcements held to great fanfare. Sinn Féin is acutely aware of this and, in preparing for the opportunity to make rights real, in our alternative budget for 2019 we provisioned an additional allocation of 500,000 personal assistant hours. Building on that, in our 2020 alternative budget we allocated an additional 1.5 million personal assistant hours and we demonstrated how that, and everything else contained in that document, could be funded. It can be done; all it requires is the political will. With all due respect to the Minister of State, he and his Government have the power to make rights real for people with disabilities. Despite all his earlier claims, when is he going to step up to the plate? Is he going to champion this cause? Is he that man at the Cabinet table? He has very little time left to demonstrate that he does intend to make his mark, as the general election is fast approaching.
I welcome this Private Members' motion. I thank the Independents 4 Change group and Deputy Pringle for bringing up for debate in the Dáil this important issue.
I also welcome people in the Gallery from Independent Living Movement Ireland.
There are thousands of people with a disability across Ireland and some are to be found in my constituency of Dublin North-West. Many of these people face great hardships and struggles because of their disability in their home, in the community, and out and about in their daily lives. The one thing we do not need to do is to make it harder for those with disabilities.
It is difficult for many people without disabilities to lead normal and productive lives in the Ireland of today and we can appreciate the obstacles those with disabilities have to overcome in their daily lives. People with disabilities want to live independently and have the freedom to make the same decisions and choices as everyone else in society and they should be given the means to do so. People with disabilities should have the same opportunities to realise their goals and have the same level of control over their lives as everyone else.
The ability to live independently can also lead to employment options and choices giving people a sense of value as well as being important to their well-being. A personal assistant gives people with a disability the freedom and flexibility to live their lives how they choose. Sinn Féin has been supportive of the rights of those with disabilities and we have a strong advocate for those with disabilities in our spokesperson on disability rights, Deputy Ó Caoláin.
The experts on the needs of people with a disability are those with a disability themselves and we need to listen to what they are asking for. We often take freedom of choice and self-determination for granted. People with a disability deserve the same such degrees of freedom of choice and self-determination.
People with a disability need to be fully included in the community and they should have the means and supports to enable them to be. A personal assistant allows persons with a disability to do all the tasks that they cannot do for themselves which allows them the freedom and flexibility to make their own choices as well to be full members of society.
We do not want to exclude people from our communities and it too easy to do so if they have a disability. Personal assistant services allow people to stay connected to their community and to live their lives as they choose.
I fully support the establishment of a commissioner for independent living. Personal assistant services should be a right for all those who require them, and to quote one person with a disability who uses such services, "Personal assistance is often the difference between existing and living for many of us."
I very much thank the Independents 4 Change group for this motion, which I welcome. It is something that, I suppose, we should have discussed in detail on the floor of the House previously. I want to acknowledge the work of Senator John Dolan, my fellow county man from Tipperary who is present, for all the work he has done for persons with disabilities, but particularly on this issue, which is something he is quite passionate about, as I know only too well from sitting beside him for so long on various committees. I also want to acknowledge the visitors here tonight.
On 19 April 2018, the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, entered into force in Ireland, and yet there has been little improvement in access to personal assistance services for persons with disabilities. Personal assistant services are a cornerstone of the programme of personalised supports that will enable the convention to become a reality for many people with disabilities.
In short, the UN charter extends basic rights, rights which most of us take for granted. The charter guarantees those with disabilities the right to live where they choose, and in doing so, be fully immersed and integrated within their community.
Likewise, the National Disability Inclusion Strategy 2017-2021, as well as other domestic policies, aims to support people with disabilities to live fulfilling whole lives enabling them to participate fully in the activities of our communities. Personal assistance is vital in ensuring this right becomes a reality for those with a disability.
Approximately one in ten Irish people - 13% exactly - has some form of disability. That could be a physical disability, vision impairment, hearing impairment, intellectual disability or mental health condition. Incredibly, although many are born with a disability, the majority, to be precise, four out of five people, acquire their disability throughout their adult life. In such cases, persons with acquired disabilities would have often held employment, been active in their community, and also had a fulfilled family life. A disability, whether acquired or not, should not stop that. That is why this motion is so important. However, the latest CSO statistics show that persons with disabilities were more than twice as likely to be unemployed than those without a disability. Even for those with a disability who are in employment, working-aged adults with a disability were 2.6 times more likely to report an unmet need than adults aged 65 and over.
The Government has stated that it aims to increase the employment rate of persons with disabilities from 3% to 6% by 2024. This is laudable but the Government, as we are all aware, often sets targets only to later shift the goalposts.
I agree with the motion that we need to re-frame how we view disabilities, and indeed the provision of personal assistance for persons with disabilities, not as a health problem but as a State service that can help them to carry out their day-to-day work, have a social life, engage in activities and participate. Giving people their dignity is what this debate is fundamentally about. They should be able to participate in every walk of life in the same way as the rest of us.
As the motion states, 84% of those with personal assistance receive fewer than three hours of personal assistance per day, while half receive on average 42 minutes each day. That is completely unacceptable, as the Minister of State, Deputy Finian McGrath, knows. I presume he will acknowledge that.
According to an ESRI report released this year, Ireland's provision of home care services to persons with an illness or a disability is one of the worst in Europe. The level of provision for working-age families and individuals with a disability must improve. A disability is not something people play up, or put on, for a couple of hour a day, or, indeed, for 42 minutes so this needs to change.
The motion mentions Sweden as the gold standard and there are lessons to learn here. According to the same ESRI report, unmet need for home care, including those with a disability, was four times higher in Ireland than in Sweden.
Although the issue of personal assistance for persons with disabilities is distinct and different from home help hours, they share many of the same problems. They need to be dealt with.
In the time remaining, I will discuss some of the issues here. There is a deep confusion in many of the different layers in society, in government and in the Civil Service about the differentiation between home help hours and personal assistance and, collectively, we all need to deal with this. That confusion is something that only came to my attention when I was researching the motion tabled by Deputy Pringle and his colleagues. One can see it in some of the responses to questions, not only put to the present Government, by the way. We really need to absolutely distinguish between them. The Government has only a short time left and the Minister of State, despite his good intentions, cannot change the world overnight, but if he could put in place some process to ensure that happens straightaway, it would be one welcome result out of this because it is very much confused. Frankly, that confusion is insulting to those on both sides of the coin. It is particularly insulting to those who need personalised services.
An issue I want the Minister of State to deal with tonight is that when people who need personal assistance and personal assistance hours get home help hours, they are not then taken off the list for personal assistance hours and one does not graduate towards the other. That is not the way this should work.
They are very distinct. When somebody gets one, the person should not be put in the position that he or she will not get the other. Unfortunately, like me, a number of colleagues have heard that story. That is another matter the Minister of State could deal with.
There is no standard procedure for the administration of personal assistance. That is another weakness that could be dealt with easily. I fully support the call for a commissioner for independent living to give people freedom and choice. If the Minister would push to bring that about, this motion will have achieved a great deal. On that basis, I look forward to the Minister of State's responses to this debate.
I am delighted to have the opportunity to speak on and support the motion and I thank the Independents 4 Change for putting it forward. The motion will help to provide disabled people with the freedom to have the same choices everybody else has in housing, transportation, education and employment. For many disabled people, independent living can be achieved through a personal assistance service. Currently, there is no legal right to personal assistance in Ireland. There are no standardised procedures or application processes and due to the lack of legislative protection those in receipt of this support have no security regarding the continuation of the service.
In December 2017, I and my colleagues in the Rural Independent Group tabled a motion on home care packages. In the motion we called for the home care package scheme to be established in law to give everybody an automatic right to the service. We are still waiting, and many more are waiting. We talk about the UN Convention on the Rights of Persons with Disabilities, but in west Cork there is no transport service for people over 18 years of age. If their parents cannot take them to the service providers, they must stay at home. If that is what we call ticking boxes and getting things right, we are doing a very bad job for certain people with disabilities. We cannot pick out one sector and say it is resolved when another sector is suffering. People are suffering. In west Cork, volunteers and community organisations in Bandon, Goleen and Ballydehob are volunteering to provide this service. The State has turned its back on the people with disabilities who are over 18 years of age.
I have been talking about this for long enough, but nothing has been done. Money is being squandered throughout west Cork by the health service on transport, but nothing is happening on the ground. Ms Sarah Dullea was refused a public transport service by Bus Éireann. She is a wheelchair user and a beauty therapist in Dunmanway. That lady had to go through hell to get her rights. That is the situation in the State today. The rights of people with disabilities must be examined further in this country. If not, they will be let down.
First, I thank Deputy Pringle and Independents 4 Change for bringing this important motion before the House. It is very important for people to have the personal assistance they require and to be given every tool they need to live independently at home if that is what they wish and what suits them. It is paramount that every person, regardless of the different issues the person must live with, is allowed to get the most from his or her life.
I thank the Minister of State for the proactive approach he has taken in County Kerry. Every time he was asked to come to Kerry, including by me, he came. He helped us with a situation in the north of the county and he is now helping with a situation in south Kerry with regard to respite services. To be blunt, he is not found wanting. The Minister of State knows that I would not heap praise on him only for the fact that I tell it as it is. He is a person who listens to us about the issues. He would be the first person to say that everything that is being done is not perfect and that we must do more, but he has done much good work in his role. On behalf of the people who have benefitted so far from that work I thank him, but there is a great deal more to do.
It is a good day when the rights of people with disabilities and different needs are debated in the House and time is given to the subject during which Ministers must come here and be accountable for their roles and for the roles of people working in the Department. It is a good day for the people who need assistance and need us to be proactive on their behalf. I thank the people who have come to the House this evening and who were here earlier for taking the time to listen to this debate. Again, each time we approach the Minister of State for something for Kerry we will want him to listen to us as he has done in the past.
I am glad to have the opportunity to speak on this important topic. I thank Deputy Pringle and his group for putting forward the motion for debate. I also thank Senator Dolan for all he has done in his role as a Senator and in the years prior to that to help people with disabilities to have as normal a life as possible.
I only have a short amount of time. Many people with disabilities acquired the serious disability at a moment's notice. Ian O'Connell is a lovely young fellow in Killarney, County Kerry, who had a serious accident. He is doing his level best to maintain a normal outlook. He is continuing to go to school in Killarney and he intends to lead as normal a life as possible. The accident happened like a flash. He was on his bicycle in Killarney National Park, where one would think one would be safe. He is doing fine and we all look up to him for the courageous manner in which he is taking on his disability. People like his parents need all the support and help they can get to ensure that people like Ian can continue on a normal track and retain their dignity and pride. Whether they are pursuing job opportunities, socialising or anything else, it is important that those people retain their independence as much as possible.
I again ask the Minister of State to ensure that children with Down's syndrome are included in the July provision. It is very important for them. They have a disability as well and they should have the opportunity to avail of the July provision. Family members take on the role of personal assistants at a moment's notice when an accident, stroke or something else happens. We must help those family members and carers in whatever way we can. Finance should not be an issue when dealing with these people.
First, I refer to the email that Senator Dolan sent us today. It is important to record his point of view: "I have witnessed for the past 25 years the constant erosion of the practical life enhancing tool of a personal assistance service since it burst onto the political agenda in the early 90's under the leadership of Martin Naughton and ... People such as Dermot Walsh, Florence Dougall, Mairead Menton ...". The baton has been carried on by Shelly and James of Independent Living Movement Ireland.
It was not until I met Dermot Walsh who was a constituent of mine in Walkinstown that I really realised what the allocation of personal assistant hours actually meant to somebody. He was very active in his communit and a full-time disability advocate with Dublin Bus. His personal assistant used to get him into work in the mornings, would drive him in the car and bring him to conferences, including overseas. He had that support every minute of the day and lived independently. That is what I am talking about when I talk about independent living, not home help hours or assistance for a couple of hours a day. The Disability Federation of Ireland made these points at a briefing last year and it contradicts completely what the Minister of State told the House. It stated clearly that only 0.3% of all people with disabilities received a personal assistant service. Joan O'Connor who wrote the briefing document noted that notwithstanding the definitional issues or conflation of personal assistant and home support data, the figures showed that overall there had been a drop of over 25% in the numbers in receipt of personal assistant and home supports combined between 2010 and 2017. She noted that, in the context of the personal assistant service, the majority received assistance for between one and five hours, that is, 957, and for between six and ten hours, or 538. There was only a target of 256 receiving between 21 and 40 hours in 2017. Only 5% of the HSE's disability budget was expended on personal assistance and home support services.
Article 19 of the UN Convention on the Rights of Persons with Disabilities, UNCRPD, specifically mentions personal assistance under section b where it states: "Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance". This article means that a person with a disability has the right to live where they want, the right to be fully included in the community, that States must provide the supports needed to achieve these outcomes including personal assistants and that all community services should be available to people with disabilities.
There was no specific reference to independent living in budget 2020. It failed to bring a comprehensive coherent approach to resourcing the real inclusion of disabled people in Ireland despite commitments made by the Government that it would disability-proof budget 2020. I put it to the Government that it should respect and implement the UNCRPD to provide the personal assistance hours that people really need, not the home help hours or a couple of hours here or there, and comply with the article in its entirety and its precise meaning. The only way that can be done is by referring those rights to the HSE and telling them that those rights must be vindicated among citizens with disability.
Last week we debated progressing disability services for children and young people. A point I made was that we knew much more about people with a disability. We know what needs to be done, how and why it needs to be done. We are talking about the service and provision of supports for those with a disability that will enable them to live and support them in living fulfilling and enjoyable lives. We are also talking about supporting young people to realise their potential. We have been strong on theory but not on practice, hence the subject of this debate. Gabhaim buíochas don Teachta Pringle agus do Jodie Neary as an obair atá déanta acu don díospóireacht seo anocht.
Independent living is what it is all about. That is what will make the difference. We have been talking about this issue for a long time and it is positive that we are having this debate in order that we can see a way towards progress. With personal assistants, people with a disability are able to do the things that those of us without a disability take for granted. I met people with disabilities with their personal assistants this evening and have met them at other times and there is no doubt about the difference it makes. It is invaluable in assisting a person with a disability to do all of the things he or she wants to do, whether it be to go to work, engage in education, go shopping or out to socialise. We have seen amazing relationships develop between a person with a disability and his or her personal assistant. As the Independent Living Movement puts it, it is often the difference between existing and living. The movement jas also pointed to a 1996 survey which identified a need for a ten-hour personal assistant service per person per week, but it would just cover essential personal care needs. So much more is needed to provide for quality of life. Progress was made when the Minister of State, Deputy Finian McGrath, ratified the UN Convention on the Rights of Persons with Disabilities. We know about Article 19 which asserts the right of those with a disability to live in the community and access the services they need in order to do so. However, the motion before us deals with the reality, which is very different.
The first figure I look for in the Budget Statement every year is what is being given to people with a disability and each year it has been disappointing. There is an opportunity to correct this by supporting the motion and it is good that the Government will do so. I was emailed by Des Kenny, the new chairperson of the Independent Living Movement of Ireland, who wrote about the need to unlock the restrictive policy in the Dáil. We need to take a rights-based approach. We know about Senator Dolan's work. He has observed how in the past 25 years he has witnessed the constant erosion of the practical life-enhancing tool of the personal assistant service. The idea had first been mooted in the 1990s.
Like others, I mention the late Martin Naughton. I had the distinction of being his teacher for a year when he came to my school. He was always ready to spend the night sleeping outside Leinster House with whoever would join him to highlight these issues.
In 2018 the HSE stated it was committed to protecting the level of supported provided by the personal assistant and home support services. However, there is the staggering statistic that 0.3% of people with a disability receive a personal assistant service. Some 5% of the disability budget is expended on that service and home support services, while 85% is expended on residential and day care services. We know the difference between it and the cost of the fair deal scheme. Ultimately, we are talking about more than economics. We are talking about the right of a person with a disability to live where he or she wants, his or her right to be fully included in the community, make decisions to have control over his or her life and live independently, as is allowed by the personal assistant system. The easy part for us tonight is to make speeches, as we have done for almost two hours. The difficult part is dealing with the realities of life for people with a disability which successive Governments have not made any easier. I hope that with Deputy Pringle's motion we will see progress.
The vital personal assistant service is undermined by the medical model of disability. People must do what they are told, not what they want to do so. We see this in the action taken by the Irish Wheelchair Association to impede the hand-over of the Cuisle respite care service in County Roscommon to another operator. The right to work, have friends and have a choice of leisure activities is restricted by this lack of independence. I will give two local examples. John is 48 years old and suffered a brain injury ten years ago. His permanent residence is a private nursing home. He is allowed to retain 20% of his weekly income, out of which he must pay for taxis to attend hospital appointments, prescription charges, for clothing, a physiotherapist and a personal assistant. Cathy is 42 years old. She occupies a rehabilitation bed, despite being ready to be discharged six months ago because no homecare support service can be secured. She is blocking a bed for Helen who has been trapped in St. Vincent's University Hospital in Dublin for the last year while she waits for a rehabilitation bed. This has to change.
I compliment Deputy Pringle and Jodie Neary for bringing forward the motion on personal assistants, which, like many others, I give my full support. As the previous Deputy noted, everyone tells people with a disability, especially wheelchair users, where they will go or what they should do. They make decisions without consulting them, which is totally disgraceful. We need to make sure personal assistants receive a proper number hours and have proper pay and conditions. It amounts to devotion to make sure people, whether they use a wheelchair, are able to live a fulfilling life, no more than any of the rest of us.
On behalf of the Minister of State, Deputy Finian McGrath, who had to leave the Chamber I will respond to some of the matters raised.
We all share a common desire to have the best possible policies and services for all children, adolescents and adults with disabilities.
We all want everyone with additional needs to have access to the necessary supports in every aspect of his or her life to enable him or her to achieve his or her full potential, maximise his or her independence and live a rich and fulfilling life.
Government policy on disability services is set out in the national disability inclusion strategy which recognises the long-standing Government commitment to mainstream public services to include and serve people with disabilities. This is underpinned by the Disability Act 2005. In line with this policy, there are no disability-specific strategies, as to have such strategies would create inequity and could lead to calls for specific strategies to cover all types of disability. The Government is committed under the national disability inclusion strategy to ensuring people with disabilities are empowered by policy and programmes to participate meaningfully as citizens in Irish society. The strategy is driven by this basic but fundamentally important objective and is the most effective combination of legislation, policies, institutional arrangements and services to support and reinforce equal participation for all people with disabilities.
Across government in transport, housing, equality, health, employment and social protection services, we are working together to ensure children, young people and adults with a disability have the right to the same life opportunities as anyone else and live satisfying and valued lives. I share with my ministerial colleagues and other members of the Government a very strong desire to ensure people with disabilities are afforded every opportunity to realise their potential in every dimension of their lives. Whatever a person's abilities, talents or gifts, each one of us has something to offer. It is society's job to ensure we live in a society that encourages this and that people with disabilities thrive, fulfil their ambitions and contribute to their community. If that goal is to be achieved, people with disabilities must be central to all we do. To achieve this, it is important that people with a disability and their families can avail of the many opportunities to engage with policymakers in a wide range of Departments and statutory agencies. They include events organised within the context of the national disability inclusion strategy and the departmental disability consultative committees, as well as the carers' forum and pre-budget forum organised by the Department of Employment Affairs and Social Protection. The actions included in the national disability inclusion strategy generally relate and apply to people with disabilities and it also contains specific actions in the provision of personal assistance.
Significant resources have been invested in this area in the past few years. In 2019 alone, the Health Service Executive will spend €1.9 billion on its disability services programme. This is in addition to mainstream general medical services accessed in primary care and hospital settings. The breakdown of the budget for specialist disability services in the last full year is as follows. There is a figure of 64% for residential care services, 21% for adult day services, 5% for personal assistant and home support services, 4% for multidisciplinary therapies, 3% for respite care services and 3% for other community services and supports. As my colleague, the Minister of State, Deputy Finian McGrath, outlined, the Government has committed €2 billion in health service funding for specialist disability services in 2020.
The role of a personal assistant is to assist a person with a disability to maximise his or her independence through supporting him or her to live in integrated settings and access community facilities. The personal assistant works on a one-to-one basis in the home and the community with a person with a physical or sensory disability. A vital element of this personalised support is the full involvement of the individual in planning and agreeing the type and the times when support is provided. Supporting independent living must enhance the person's control over his or her life.
Personal assistant and home support services are provided either directly by the HSE or through a range of voluntary service providers. The majority, or 80%, of specialised disability provision is delivered through non-statutory sector service providers. To understand the progress made by the Government, we can compare the numbers in 2013 with those in 2018. In 2013, 2,057 people availed of a personal assistant, while in 2018 this number rose to 2,535. In 2013 the total number of personal assistance hours came to 1.3 million, but in 2018 it had risen to 1.64 million. In 2019 the combined budget for personal assistant and home support services came to €87 million or 5% of the budget for people with disabilities. That is a significant amount, but resources are finite and must be seen in the context of competing demands for priority funding.
It is important to note that the level of service delivered is varied to ensure each client's needs are reflected. Therefore, there is no average agreed number of personal assistance hours per person. Whereas many individuals are adequately provided for by the current level of support, we accept that many would benefit from more support hours. The Government supports the work of the HSE and agencies to explore various ways of responding to this need in line with the budget available. I acknowledge that the motion speaks about not conflating personal assistant services with home support services and the HSE measures and assesses both services distinctly. However, personal assistant services and home support services are closely linked and many people with disabilities require both home support services and personal assistance. In 2018 the State provided for the provision of 2.93 million hours of home support for adults and children with a disability, an increase of 180,000 hours on the 2017 target. As with every service, there is not a limitless resource available for the provision of personal assistant services and although the resources available are substantial, they are finite. In that context, the number of hours granted is determined by the available resources and other support services already provided for the person.
To understand the future service need for personal assistance and home support services, the Health Research Board provides for planning analysis through its national ability support system database. This is a key planning tool in respect of current service provision and the future service needs which is used by the Department of Health and the HSE. It is important to remember that an individual's number of personal assistance hours needs to be flexible and may be adjusted following a service review where service demand can result in one individual's service being reduced in order to address tje priority needs of other people with disabilities within that community.
The motion refers to legislation in some other countries. I assure the House that the Department of Health keeps abreast of research developments and international best practice and is committed to developing services that meet the needs of people within the constraints of the available resources. The Government acknowledges that in some areas there may be a shortfall in service. However, it is working to address it, most notably through the Slåintecare reform programme. It is the Government's aim to ensure all citizens can be offered the right care in the right place at the right time.
I have noted some of the concerns raised by Deputies and will bring them to the Minister of State, Deputy Finian McGrath. I have long had connections with people with disabilities in my family. It is important to understand that although there is a difficulty in providing services which the Minister of State is addressing, we do not have an infinite budget. I acknowledge the work being done by people on the ground, particularly by those involved in home help services and those who work with people with disabilities. I have a daughter working in the service. Since she started a couple of months ago, she has told me that she has been enriched by the people she helps on a daily basis in trying to bring them to their full potential. We are trying to ensure they can live independent lives. I fully understand the matters that have been raised, as they have also been raised by my constituents and people I have met as a Minister of State.
The motion raises concerns about consistency in access. The HSE is committed to introducing a standardised assessment process to identify and assess the needs of people with a disability. Work is ongoing in the HSE to select an information technology-based single assessment tool to ensure consistency in assessment nationally.
I welcome those in the Visitors Gallery, particularly Senator John Dolan, whom I thank for his very constructive ongoing assistance provided for all Deputies in dealing with matters of disability.
I wanted to start by thanking the Minister of State but I am afraid I cannot do so because having listened to both ministerial speeches, I am in despair at the failure of both Ministers of State to grasp what the motion is about.I welcome the fact they are not opposing it but that begs the question of what they are going to do with the motion. We are calling for action. We are calling for a commissioner within the Department of Employment Affairs and Social Protection. Will the Government please address the motion? If it is not opposing it, what will it do with it and in what space of time?
This debate takes place against a background. In March 2018, we signed the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. In April of last year, it came into operation. Unfortunately and significantly, we still have not ratified the optional protocol and therein is a hint of how the Government is dealing with disability in terms of providing ad hocservices or dealing with it as of right and within a rights-based framework. We have not ratified the optional protocol, which would allow people or groups who believe their rights have been violated under the convention to take a case under the UN convention. It is significant that we are one of three countries that have failed to do that.
In respect of the document we have finally ratified after 11 years, Article 19 has been repeatedly mentioned and it is extremely important. Under this article, people with a disability have a right - the word is “right” - to live in the community and have access to a range of in-home and other supports, including personal assistance, which are referred to specifically in section (b). Perhaps the Government might deal with that whenever it responds after tonight’s debate.
Notwithstanding the strength of this article and the wording, there is no legal right to personal assistance in Ireland, which the Minister has acknowledged. Incredibly, there is no standardised procedure or application process, and those in receipt of this support have no security regarding the continuation or the extent of their services due to lack of legislative protection. Unbelievably, the term “personal assistance” is ill-defined and poorly understood. Indeed, the representative from the Disability Federation of Ireland, in her presentation to the Joint Committee on Public Petitions in May of last year, highlighted the difficulties and the challenges associated with the lack of definition and also how it is exhausting for users and advocates of the service to have to continually redefine and explain what constitutes a personal assistance service and the constant conflation of a personal assistance service with home help. Moreover, the Disability Federation of Ireland strongly argued that well resourced, person-centred responsive personal assistance service must be understood as the cornerstone of any community services programme that supports people with disabilities. People with disabilities need the personal assistance service to enable and empower them to continue to live, not just to exist.
As far back as 2002 when Galway passed the Barcelona declaration, after major work on behalf of the disability group, we committed to making Galway universally accessible to all. We made that declaration on the basis of evidence that good design enables and bad design disables. That was a paradigm shift in theory in 2002. It is a work in progress both in terms of serious outstanding accessibility issues in Galway and the failure at national level by successive Governments to embrace the change and roll out appropriate actions in accordance with the new model, a shift that is encapsulated in the convention, which represents, as was mentioned, a paradigm shift from the medical model. It has already been pointed out how the medical model disables and the new model enables.
Independents 4 Change and Deputies Pringle and Broughan, in particular, with the help of the staff in their offices, have brought forward this motion to which we have put our names and fully support. It is a very practical motion. It has been seriously thought out. It is not asking for an awful lot. I wish the Minister of State who left was still here - I am not making an issue of that as I understand he might have had to leave - because the most important thing is that if we roll out a paradigm like this it would save the Government money on an economic level and allow people with disabilities to participate in society, which is their right. If we are going to go to all the trouble of signing and ratifying the UN convention, let us make it a reality. Let us stop the ridiculousness of those two speeches that mean nothing and continue to conflate rights with charity.
I welcome the Government's announcement that it will support motion. It would be a travesty if it opposed it. We will measure its welcome and support of the motion by what it does to deliver on it. That is what is vitally important. The purpose of the motion is to deliver for people with disabilities so that they can live life to the fullest of their abilities. That is vitally important. We will measure and monitor what the Government does over the next number of months to make that happen.
Some of the comments in the contributions of both Ministers of State were worrying in that context. The Minister of State, Deputy Finian McGrath, stated that the national disability inclusion strategy, NDIS, mid-term review is taking place, having stated in early 2019, but we do not know when it will be completed. My fear is that it will be completed next March, just before the review of the UNCRPD in April. That is the danger we face and, unfortunately, that is what will probably happen. That is what people with disabilities can look forward to happening.
The Minister of State, Deputy Byrne, in her contribution, stated: "It is important to remember that an individual's personal assistance hours need to be flexible and may be adjusted following a service review where service demand can result in one individual's service being reduced in order to address priority needs of other people with disabilities within that community". That sounds like a car being brought to a garage for a service review. This is people's lives we talking about. Why should the health services determine the review? Why can people with a disability not determine whether they have too many hours and can offer to give the hours back, if that is the case? That is not what is being offered to people and that is not what is happening on the ground. That, to my mind, is shocking and a sentence like that read by the Minister of State is terrible.
The Minister of State, Deputy Finian McGrath, stated that section 7 of the Health Act 2004 specifies: "The object of the Executive is to use the resources available to it in the most beneficial, effective and efficient manner to improve, promote and protect the health and welfare of the public." That is what we are talking about. It comes down to the HSE and the health services choosing to read that in a way that allows them to cut services as they see fit in order to benefit everybody else when one could read it and take from it that it is saying that we provide the services for people and that we will do it. That is the difference in interpretation and that is all it is, but that makes a major difference in people's lives. We have to get beyond looking at these services in terms of how the money meets the service rather than the service being there for the vitality of people. That is what we need. We will measure the Government's progress and commitment to this motion in the future against what was said.
I would like to thank everybody who contributed to the debate, all the Deputies who spoke, of whom there are too many to mention. It was great to have that support for this motion. It sends out a message to people with disabilities that there are people here who support them. I particularly thank the Independents 4 Change Members who supported this motion and allowed myself and Deputy Broughan to bring it forward.
I would also like to thank Senators Kelleher, Dolan and Boyhan who supported the motion in their capacity and have campaigned for disability rights in their work. It gave us all the encouragement to bring this motion forward to the Dáil.
I would like to acknowledge those in the Gallery who have worked very hard on this motion and the Independent Living Movement Ireland, including Eileen Daly, Shelly Gaynor, James Cawley, Brian Dalton, Maryam Madani and Damien Walshe. I pay tribute to all of them.
I would like to especially mention the Donegal Centre for Independent Living which has contributed greatly to the lives of people in Donegal. There are many more disability rights activists who were unable to attend due to the many barriers that exist for disabled people when it comes to travel, particularly when coming from rural Ireland. That highlights even more the need for this motion to be implemented.
I would like to thank Jodie in my office for her contribution. She was mentioned by many speakers and she worked very hard to ensure this motion came to pass.
I would like to particularly thank two people who could not make it here today but who I know are watching these proceedings closely and have been very supportive of this motion and continue to fight for disability rights. They are Vicky Mathews and Frank Larkin, both of whom are from Donegal. Due to the distance and the difficulties involved they could not travel here. That highlights the need for this motion to be implemented.