Wednesday, 7 May 2014
Services for People with Disabilities: Motion
I welcome the Minister of State from the Department of Justice and Equality, Deputy Lynch, to the House and thank her for agreeing to take this motion. I propose the motion on behalf of the Labour Party Senators and my colleague, Senator Mary Moran, will second it. We acknowledge the assistance and support of the Centres for Independent Living, CIL. Some representatives from its centres are present and others will come in. It is on their initiative that we have put forward this motion.
“That Seanad Éireann – - notes that Article 19 of the United Nations Convention on the Rights of People with Disabilities (UN CRPD) provides that States should recognise ‘the equal right of all persons with disabilities to live in the community, with choices equal to others’ and commits States to ‘take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community’;
- notes the commitment in the Programme for Government 2011 to ensuring ‘that the quality of life of people with disabilities is enhanced’ and further that the Government will ‘facilitate people with disabilities in achieving a greater level of participation in employment, training and education’;
- notes that the aim of the National Disability Strategy is to support equal participation in society for people with disabilities;
- notes further that the provision of Personal Assistance Services can facilitate the full participation of people with disabilities in society;
- acknowledges the progress made by the Government in respect of the Programme for Government commitments on facilitating the full participation of people with disabilities in society, particularly in:
the publication of the Value for Money and Policy Review of the Disability Services which will lay the foundations for a new system of individualised budgeting, which will allow people to exercise greater choice and control, enabling them to live fully inclusive, active and independent lives within the community;
the publication of an implementation plan for the National Disability Strategy;
the development of a comprehensive employment strategy for people with disabilities, which will be published this year as set out in the Action Plan for Jobs 2014.
calls on the Government to support the provision of a ‘Personal Assistance Service’ within the overall framework of the migration to a person-centred supports model, in order to provide people with disabilities with the necessary assistance to live and engage independently as members of society in equal measure to their non-disabled peers.”.
The motion refers to, "Article 19 of the United Nations Convention on the Rights of People with Disabilities (UN CRPD) provides that States should recognise ‘the equal right of all persons with disabilities to live in the community, with choices equal to others’ and commits States to ‘take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community’."
That principle lies at the heart of this motion. In the spirit of the article the motion, "notes the commitment in the Programme for Government 2011 to ensuring ‘that the quality of life of people with disabilities is enhanced’ and further that the Government will ‘facilitate people with disabilities in achieving a greater level of participation in employment, training and education’." We note the aim of the national disability strategy and the provision of personal assistance services. The provision of the services is the practical focus of this motion while by the broader context is set out in Article 19 of the UN convention.
The motion, "acknowledges the progress made by the Government in respect of the Programme for Government commitments on facilitating the full participation of people with disabilities in society, particularly in: the publication of the Value for Money and Policy Review of the Disability Services [...] the publication of an implementation plan for the National Disability Strategy; the development of a comprehensive employment strategy for people with disabilities,."
We want to focus on the idea of the provision of a personal assistance service, PAS, within the overall framework of migrating to a person-centred supports model, and to address the question of whether it would be possible to achieve this within a statutory framework in the lifetime of this Government. The Government has stated its intention to proceed to ratify the UN convention but certain further legislative and administrative steps must be taken in order to do so, one of the key requirements being the enactment of capacity legislation. The Oireachtas Joint Committee on Justice, Defence and Equality has considered the Assisted Decision-Making (Capacity) Bill, published last year, which is due to go to Committee Stage shortly.
The motion mentions the national disability strategy. I compliment the Minister of State on setting up and chairing the implementation group referred to in the motion, which considers how the strategy can be put into effect so that it is not just a paper strategy but is properly implemented. The Government has seen the implementation plan which was developed and published in July of last year. The CIL, some of whose members are present, and which has been very instrumental in the framing of this motion, is represented on the implementation group with other disability organisations and individuals. The Minister of State has also set up a disability forum which will operate in a manner similar to the social inclusion forum. The motion also mentions the development of a comprehensive employment strategy which is ongoing. The Department has committed to publishing the strategy at the end of this year.
The CIL, which has many centres around the country, has pioneered the concept of PAS. Every day thousands of people with disabilities benefit directly from services provided by centres for independent living. The key feature of the PAS, introduced here in the early 1990s by the CIL is that the person with disabilities is the leader in the service. The Centres for Independent Living is committed to ensuring independent living, that persons with disabilities have the choice to live life with the help of PAS. The PAS is the necessary assistance required by a person with a disability to ensure that he or she can participate of full and equal member of society. Leadership is critical. PAS should be fully directed by the individual leader. This is self-empowering. The CIL points out that it is distinct from home help services which are not empowering in the same way. In home help services other professionals decide what the person needs and assign responsibilities. In the PAS the person with a disability leads the service. That is critically important.
The HSE provides a range of assisted living services, including PAS. It states that the role of the personal assistant in a scheme is to assist a person with a disability to maximise independence through supporting them to live in integrated settings and to access community facilities. The personal assistant works on a one-to-one basis in the home or the community and services are accessed through an application process or through referrals from public health nurse or other community-based staff.
The difficulty posed by the absence of statutory framework for the PAS is that we do not have a rights-based service.
There is certainly a strong view, with which I agree, taken by the Centre for Independent Living that statutory protection for the personal assistance scheme would give it greater protection against cuts to resources, for example. It would also give individual applicants a greater feeling of support and strength in applying for personal assistance services. Personal assistance service is provided through the Health Service Executive, HSE. In its 2014 national service plan, the HSE committed to providing 1.3 million hours of personal assistance in disability services. The Centre for Independent Living points out that according to 2012 figures, there were 650 people in receipt of personal assistance services, 546 in receipt of home-help hours and 346 utilising a home-care assistant. Services are being offered but the question is about the framework in which they are offered and the access people have to these services. This is where the idea of a statutory framework would be very positive.
A statutory framework would also give greater clarity to several issues such as the definition of “personal assistance service”. The definition I cited earlier is from the Centre for Independent Living. The Government has a shorter definition, which states: "The role of the personal assistant is to assist a person with a disability to maximise their independence through supporting them to live in integrated settings and access community facilities". The difficulty with the absence of a clear statutory definition is that in a practical setting, like when a person with a disability enters hospital, the question arises as to whether they might have a personal assistant with them. That has given rise to difficulty in the past.
Senator Moran and I have heard from members of the Centre for Independent Living of the fear that personal assistance services might be withdrawn in a particular context, such as a hospital setting, or would not be allowed in particular settings. Greater clarity would be provided were we to see a definition of personal assistance scheme in statute.
A statute could also provide more clearly about the means of assessment for the provision of the service. That is another area in which, again, there is a good deal of fear. The Government could ensure the person with a disability is the leader and the person whom the budget follows. They would be the person who has the autonomy of choice. The lived experiences of people with disabilities about which we have heard indicates the need to ensure that autonomy is in place. There is a great deal of fear among persons with disabilities who are approaching retirement age that they may lose their personal assistance service or be placed in a different care context such as a nursing home.
I know the Minister of State, Deputy Kathleen Lynch, is receptive to our arguments. We heard earlier how the Centre for Independent Living has already met with the Minister of State and found her to be supportive and understanding of the issues involved. The centre also found she is aware of the fears people with disabilities may feel, particularly when they already have access to a personal assistance service and know the difference it can make in their lives in holding down a job, pay a mortgage and participate fully and equally in society. It is again returning to that key principle that is set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities that personal assistance services are fundamental in ensuring individuals have the right and ability to participate fully and equally in society.
This evening, I received an e-mail from a woman who is a wheelchair user but who lives a full and independent life solely due to the daily support she gets from her personal assistant. This support allows her to work part-time and to contribute to society, partake in activities outside of her home, social or otherwise, as well as providing her with self-determination and choice over how to live her life. She stated:
The availability of personal assistance service is a resource-based and it is no exaggeration to say that every day I live in fear that it will be taken away. If I lost my PA, personal assistance, hours tomorrow, I would lose my home as I could no longer live here. I would also lose my job as I would not have the ability to attend. The likelihood is that I would be forced to enter institutional care, the ultimate cost of which is loss of independence and self-determination.She concluded by asking Senators to support this motion as a first step in enshrining personal assistance services in law.
Her e-mail puts it eloquently. We drafted this motion with government support. There is no amendment to it and I very much hope we will have cross-party support from all our colleagues in the House. It is an important motion in recognising the importance of personal assistance services to ensure vindication of the rights of persons with disabilities under Article 19 Convention on the Rights of Persons with Disabilities. The motion also calls proactively on the Government to support the provision of personal assistance services within the overall framework. I hope it will be the first step towards a statutory-based model of personal assistance service. The Centre for Independent Living has drafted legislation to provide for this which I have supplied to the Minister’s office. While it would require some redrafting, we should examine it. This motion is important in highlighting the significance of personal assistance services to enable many individuals with disabilities, many of whom are watching this debate, to live fully independent lives and participate as equal members of society.
I am pleased and honoured to second this motion. I welcome Mr. John Dolan and other members of the Centre for Independent Living who are here for this debate. I agree with Senator Bacik on the need to put the personal assistance service on a statutory framework. Speaking to those involved, it was reiterated to me that we need certainty and greater clarity in this area. A personal assistance service in its simplest form ensures that those with disabilities are able to actively and fully engage in society. The full definition of such a service needs statutory protection and would make clear the difference between a personal assistant and home-help hours.
Many of us do not fully grasp the exclusion and everyday difficulties that arise for people with physical or sensory disabilities. Going to the cinema, the shop, or as many Members know from organising trips to Leinster House, can be a nightmare for a person with a disability. I commend the ushers in the Houses of the Oireachtas for the support they give people with limited mobility or a disability when they visit the Houses. It is an attention above and beyond the call of duty that they provide every day. Last week, I met someone in a wheelchair coming into the Houses but there was a problem with the lifts. What should have been a simple journey to speak to a Member turned into the greatest nightmare for this person. The everyday tasks we find so simple can be a barrier for a person with limited mobility to leading a full and inclusive life in society.
While Ireland has not yet ratified the UN Convention on the Rights of Persons with Disabilities, I believe there is cross-party agreement on Article 19 that provides that states should recognise the equal rights of all persons with disabilities to live in the community with choices equal to others and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community.
We have all spoken about this idea and paid lip service to it. We have laid documents and reports before the nation but we need to do more and provide more tangible and concrete paths to inclusion. We need to strengthen the person assistance service so that those with a physical or sensory disability are no longer at a disadvantage. I believe the rest of society is missing out because of the conscious or unconscious barriers placed before people with a disability.
This Private Members' motion calls on the Government to support a person centred support model for a personal assistance service that would allow for independent living and full engagement in society. That seems simple. The overall funding for the disability services programme in 2014 is €1.4 billion with the HSE providing a range of assisted living services, including personal assistance services. The Disability Federation of Ireland published a report on the personal assistance services provided in Ireland in February 2014. The report identified a lack of understanding of the special role and the purpose of the service, with new entrants having less control over its delivery. The authors of the report stated that by refocusing on independent living for the user, the service would better progress our own policies in Government. This service should not just be about meeting the personal care needs of the individual. Independent living was the original focus and should remain the focus today.
It is well established at this stage that by proving empowerment by the personal assistance service, the mental and physical health of the user, the leader, would be enhanced. This could lead to less care being needed in the future while also removing many people from residential or assisted living situations, where possible. In the document the Disability Federation of Ireland has provided a very apt quotations from a man, which states: "I would rather fight to the death, if I had to for my freedom, the personal assistance service has ensured my freedom. If I did not have the personal assistance service I would be in bed with bedsores in one room with very few possessions". One can imagine the mental and physical toll that would have. He finished by saying, "Life would not be worth living". Senator Bacik referred to the number of e-mails we have received on this subject. It is great to see the number of people who take an interest in the debates in the Seanad and want to play their part. I am delighted that we in this Chamber have the opportunity to be the voice for people who have put forward their views on this subject. The very caring Minister of State listens to the people whom she meets.
The allocation of €1.4 billions to this section of the health service seems a great deal of money. It is a great deal of money but my argument, which I have made previously, is that disability is not just an issue for the Department of Health. I have made the case that those with disabilities who participate in sport come under the remit of the Department of Transport, Tourism and Sport. Services for the disabled also come under the Departments of Education and Skills, Environment, Community and Local Government as well as other Departments. Intellectual, physical and sensory disabilities should be addressed by every Department.
The allocation of €1.4 billion for 2014 will provide numerous supports for people with disabilities across the country. It is not always about how much we allocate but how to use the money most effectively and efficiently. Through my role in this sector, I hear that the quality of the personal assistance service could be improved. In the mental health sector, we now have a person to lead service user engagement to improve our mental health services. I am aware the Minister has set up and I commend her on chairing the National Disability Strategy Implementation group which is progressing the national disability strategy. I believe further consultation could be conducted on the specific area of personal assistance service with service users. This would certainly lead to a much-needed improvement in the service as well as possible cost savings. Both sides of the House would agree and acknowledge that elements of the HSE require reform and overhaul, which is being undertaken at present. I have advocated during my time for further and meaningful engagement with service users across the whole health sector. We are now specifically looking at this with the mental health and disability service users. It is important to actively engage with personal assistance service users in order to make the service a person-lead service.
I welcome the Minister of State, Deputy Kathleen Lynch, the representatives from the Disability Federation of Ireland and the Centre for Independent Living. As much as I would like to think that the public takes a great interest in the debates in the Seanad, I think we have the databases of the Disability Federation of Ireland and the Centre for Independent Living to thank for the e-mails we have received and the interest in the debate, for which we are all grateful.
The Fianna Fáil group will be supporting the motion so as not to detract in any way from the shared commitment of everybody in the House to make the current situation better. Some of the choices made during the period of austerity in the past number of years were unnecessary and continue to make it very difficult for people with disabilities.
We on this side of the House had to consider whether we would support this motion, and I found it unusual that the Government that had introduced such cuts was now tabling this motion. The analogy I use is that it is like Phillip Morris championing a campaign to give up cigarettes. Taken in isolation, we all have had to endure the cuts in the health service, such as the increase in the prescription charges, and the reduction in services. This has bitten into society in a very severe way for all able and disabled people but the impact has been greater on the 19% of the population with disabilities. Neither this Government, nor previous governments have covered themselves in glory when it has come to the prioritisation of funding and the tendency is to reach for the low hanging fruit, which all too often falls within the responsibility of the Minister of State, such as mental health funding, the provisions for the disabled and so on.
We are in agreement on the need for a statutory based personal assistance service, more employment and the various other well made points in the wording of the motion but the reality is that talk is cheap and actions speak louder than words. Choices had to be made and the Labour Party lost out to the Fine Gael Party on the argument to add a percentage or two to the taxes on people who were better heeled and earning an income of over €150,000 per annum who could have given more. This would not be a panacea for all the cuts that were necessary but it could have prevented some of the cuts that had to be made in services to the most challenged sector of society. We failed to do that and I feel we must look back in shame at not having made the choices that would have been less popular with other sections of society, but in terms of our responsibility to people with disability would have been the correct thing to do. Perhaps the Minister of State would have liked to have done this but the reality of the choices made were not conducive to what was necessary to help people with disabilities.
It is unusual to see a Government come forward with a motion such as this when it holds the reins.
There is a draft HSE policy on disability, accessibility and the use of supports which includes support persons, personal assistants, assistive animals and assistive technology. The document reference number is 20.3.2013 which refers to the date of 20 March 2013 and is listed as "revision 6, pending approval." The document was not released to me because it is a confidential document but it does exist. Shockingly, anecdotal evidence suggests that in February of this year the newly-appointed head of disability services, Ms Marion Meaney, was unaware of the document. One wonders whether Mr. Pat Healy, the director in this area, is aware of the document. Then again why should I wonder when nothing was done with the document since March 2013? That is hardly the kind of commitment from a party which proposes to put the issue of personal assistance on a statutory basis. It is a sad indictment of the abject failure of the Government's approach to this area when a document, pending approval, has not been visited since March 2013.
I have no doubt that the Minister of State can investigate the issue. I have a photograph of the front of the policy document that I am glad to share with her after the debate because it is too small to show her now and cannot be seen from across the room. I can assure her that it does exist. It is shocking in the extreme that, on the one hand, that inaction is sought to be promoted yet, on the other hand, the same party tabled the motion.
Cuts have further exacerbated the difficulties experienced by people with disabilities. All Governments share the responsibility for the failures in this regard. Far be it from me to exclusively punish the existing Government but absolve previous Governments. I would never seek to do so and will not. I shall, however, highlight the fact that it is odd to table a motion in the name of the Government parties at this time while at the same time ignore a policy that has been in existence since March 2013, that groups like the Centres for Independent Living, the Disability Federation of Ireland and other stakeholders, having participated in its preparation or signed up to, would like to see implemented. The Government has continued to procrastinate. Today we have a motion that seeks to put the initiative on a statutory footing but it will not even put in practice the same policy that the Minister for State, and the officials operating under her control and auspices, have sat on for the past year.
To conclude, I thank the people who made the effort to come here today and I had an opportunity to meet one or two of them beforehand. We know the chief executive officer of the Disability Federation of Ireland, Mr. Dolan, from old and ongoing debates. We are grateful for their ongoing assistance.
I urge the Minister of State to dig out the policy document and make sure that Ms Marion Meaney is made aware of it, and the director is now aware of it. Instead of leaving it on a shelf I urge the Minister of State to dust it down, approve it and let us move it forward as quickly as possible. The people who took the time to pass through all of these areas and stairs, and got into the lift on the other side of the building, in order to come all of the way in here, deserve to hear a little bit more than rhetoric on the motion tabled today. Instead, they want action taken on the policy that they helped and advised the HSE in drawing up. I have a picture of the draft policy document that I am glad to show to anybody after the debate.
I welcome the Minister of State to the House and very much welcome the debate. I note that the Irish Human Rights Commission, then chaired by a former Leader of the House, Dr. Maurice Manning, with the active participation of Professor Gerard Quinn of NUIG, played a significant role in conjunction with many NGOs in the area in the drafting of the United Nations Convention on the Rights of Persons with Disabilities. It was the first time a United Nations convention was drafted with the direct involvement of those actually concerned. This happened by conforming to the principle of "nothing about us without us."
Ratification of the Convention on the Rights of People with Disabilities is of major importance for the Government. I hope that the last major roadblock - the passing of the Assisted Decision-Making (Capacity) Bill 2013 - will not take much longer. It is very complex legislation and such capacity infrastructure is very recent in other jurisdictions. The Minister for Justice and Equality is to be commended for publishing the legislation. It is six years since it was first mooted by the previous Government and eight years since the convention became open to signature. I am hopeful that the Government will be in a position to ratify it during its lifetime.
A personal assistants service, as outlined in the motion, would be in line with Article 19(b) of the convention and would support living and inclusion in the community. The autonomy and participation of those with disabilities in our communities is vital. We have, for far too long, seen those who were somehow classed as different being shut away. For decades our mental hospitals were filled with those who, for one reason or another, were not considered worthy of participation in society. A service, as outlined, would ensure that an individual could exercise choice and control over his or her life and contribute to the community. It is reflective of the relevant human rights principles. The individual is encouraged and facilitated to pursue educational opportunities and meaningful activity or employment that suits his or her age, needs and preferences. They are supported in becoming an active citizen and participating in community based recreational activities. They can also avail of travel opportunities.
I note that the Disability Federation of Ireland has said that the personal assistance service has formed, and continues to form, the backbone of community services and supports that enable people to live independently in the community and supports people's choice and control. It allows people to engage more equally with family members, their community and their employers. The disability federation's report on personal assistance is a comprehensive and balanced document that outlined the challenges and changes required for such a service.
The personal assistance service and Centres for Independent Living are vitally important. However, I note from various research, that there is no defined understanding as to what constitutes a personally assisted decision or service but there is a need to define it in statute. In my view that is something that should be pursued in order to provide a consistent service to people with a disability.
Finally, I commend my Labour Party colleagues for tabling the motion and I am delighted to fully support their motion.
I join in welcoming the Minister of State to the House once again. I also thank my Labour Party Senators for tabling the motion and giving us an opportunity to debate disability services, particularly Senators Bacik and Moran.
I join in the welcome extended to the delegation from the Centres for Independent Living. I also welcome Mr. John Dolan and Ms Jacqueline Grogan from the Disability Federation of Ireland who are seated in the Gallery. The Disability Federation of Ireland is a good place for me to start. I advise everybody to read its recent report that was produced in February entitled Access to Life: Personal Assistant Services in Ireland and Independent Living by People with Physical and Sensory Disabilities. The report details the current difficulties faced by those using personal assistant services, their vulnerability to funding cuts, the inappropriate forms of regulation, and the failure of policy-makers to implement the Government's stated objective of full inclusion and self-determination.
I note that the motion began with the ratification of the UN Convention on the Rights of People with Disabilities which, as Senator Bacik mentioned, has not been passed yet. In fact, Ireland is one of three countries in the EU that has not ratified the convention and are joined by Finland and the Netherlands. We should hang our heads in shame for not ratifying the convention. Obviously we need to pass the decision-making Bill before ratification takes place. Even if it is passed there are concerns that the Government will be in difficulty when it comes to ensuring that the convention is applied.
The recession has led to delays in the implementation of our current disability strategy. In the case of school leavers with intellectual and multiple disabilities we have found places and bits of places and services. Unfortunately, when the time runs out for such services - which is three years maximum - another race to find bits of provision starts. There is no joined up thinking and co-ordination of supports.
Families and those with disabilities do not know who funds what. Many think it is voluntary agencies which raise the funds and, therefore, feel beholden to this charity model that we have developed. Most of these services are 80% to 90% funded by the State and they have seen cuts year after year. Transport to services have been cut, as has respite and funding for social activities. Those who complete third level education report that losing the personal assistants they had to attend college then leaves them stuck at home. They have completed this great achievement, they have gone to college, they have had these supports and they are told, "Well done, you have got your degree. Now you can stay at home." There has been no recruitment into the public service in eight years. Recruitment into the private sector is extremely difficult, with such high unemployment rates generally.
The quality of the services which have been developed from the 1990s have really eroded in the past decade. Those using the services are terrified of complaining because they feel they may lose what bits they have, not to mention the situation for many who are on waiting lists. Then, of course, there are the numbers who do not know. We do not have lists of those because they do not know that they are entitled to ask for these services.
Provision of personal assistant hours to new service users have slowed considerably. Instead, persons with disabilities are given minimal home help hours or nursing home beds. Home helps cannot leave the home and are present for the minimum amount of time. Often assessments for services are led by nurses and doctors, which means that it has a medical focus. The medical model of disability is one which has us in the state we are in with an institutional focus on the services that are needed.
The assessment needs to ensure those with disabilities can have supports to take part in employment, community and family life. The recent documentary on RTE, "Somebody to Love", is an example of the importance of persons with disabilities having opportunities to have relationships and families. Surely, all of that should be within their expectation and reach.
Personal assistance hours that persons with disabilities are awarded are for the bare minimum, in terms of personal care and food preparation. That is how the hours are awarded when, in fact, often what persons with disabilities tell me they need the hours for is communication and advocacy. Those with communication disabilities are often forgotten about. They need assistance in managing money, setting up homes, accessing transport, making complaints, being heard and being listened to. It is not all medical. It is not all basic needs. Lack of personal assistance hours has led many to stay in acute hospital settings. We discussed this previously when we discussed the issue of nursing homes in this House. These, for me, are the institutions of the 21st century for persons with disabilities.
Looking at the motion, the focus on value for money has been on the costs of services and the salaries of those working rather than on those with a disability who use the services which is where the focus on value for money should be. It should not be looking at waiting lists for services. It should be looking at quality of life. Little has been done on individualised budgeting. The scramble in the past few years has been to find places in day services and training for school leavers. I raised this issue with the Minister of State, Deputy Kathleen Lynch, last month at the Joint Committee on Health and Children.
In terms of those in residential settings, there are minimal moves to support some of them into the community. However, persons with a disability living at home with their families who wish to leave home or do not have support of families, or where their parents are getting older and can no longer care for them, face long waiting lists for services and housing. In short, we do not support adults with disabilities to plan their lives. The State funds voluntary bodies to provide services to a few. It presupposes that families will support them and there is little individualised planning. There are no rights to services under the Disability Act 2005.
In conclusion, we need a co-ordination of supports and assessment of need for all of those with disabilities. We need to promote the personal assistance as a key to support for persons with disabilities in self-determining their lives. Personal assistants are referred to as arms and legs by those with significant disabilities. A personal assistant is one who works on the instruction of the person with the disability and leads to a full life of one's choosing. Independent brokerage is required to help persons choose what is right for them rather than fitting them into services. "Lives" should mean providing persons with disabilities with the supports they need to live those lives. Currently, persons with disabilities feel owned by the services rather than owning the supports that they receive or feel they need. In effect, we must move away from this model of charity to a rights-based approach. That, for me, is not about the cost basis. It is about how we use that cost and how we empower those with disabilities.
What has happened with the politics of cuts means we do not sit down and plan the services. We do not ensure that there is individual planning and support for those with disabilities to determine their own lives. The past seven years - I have been going through reports - have seen persons with disabilities who have been silenced because they have to be grateful for the little support they get. They have to fight to keep the little things, and only for what is available.
There is little data, which is also a significant problem. We do not have data on the waiting lists for personal assistance services. We certainly do not know the numbers who could use the service. Sometimes those with a disability are not aware of it or they are prevented by those who oppose independent living.
I welcome this debate, but we really need to look at how we move forward. It is not only about the health services. As much as I want to live my life in many different ways, we need to ensure that we develop a personal assistance service that allows each person individualised planning. That would probably make economic sense too. For me, it is the rights-based approach that is the important way.
I thank the Labour Party group for putting down this motion. It is an important debate and I thank the Minister of State, Deputy Kathleen Lynch, and welcome her here. I have heard Deputy Lynch speak on this issue so often that it is, I would say, one of her major priorities, although she has many in these trying circumstances.
A quote, "Help me to do it by myself," would be most apt today because that is what constitutes independent living. People do not want everything done for them but they want help to do it by themselves. We may take that message from all of the Members who have spoken here today.
We always hear as well that one should give a leg up rather than a hand out. This is demonstrated here today by this magnificent document produced by the Centres for Independent Living, whose representatives, along with those of the Disability Federation of Ireland, I welcome here today. We can see that shining through, not alone in the document itself but in the life stories of persons with disabilities who have benefitted from personal assistance. They say a picture tells 1,000 words, and there are many pictures in this that do so. One, in particular, came to mind, namely, that of the person from Clare who was assisted by his personal assistant to go back into education and then take up gainful employment. As we will have seen in our own personal lives and in dealing with others, those who are helped, through education or whatever, help themselves and do not become dependent on the State. Sometimes a little makes a considerable difference. The message, if we looked at it that way, is "a little means a lot".
One of the previous speakers stated it is not an issue only for one Department. As illustrated, it transcends right across every Department. Most of the Members who spoke here today mentioned the United Nations Convention on the Rights of Persons with Disabilities and the optional protocol, which was adopted in 2006. The Republic of Ireland signed the convention. I will not go into it as Senator Hildegarde Naughton has given the history of it in detail. It is a long time in coming. I note the former Minister for Justice and Equality, Deputy Shatter, took it to heart with the Assisted Decision-Making (Capacity) Bill 2013 that was spoken of by Senator Naughton. He, along with the Minister of State, has done significant work on that, and I welcome that.
That statutory framework is definitely an issue. Words are cheap but when it is written in statute, that gives power and power means enablement. Knowing one's rights is one matter but having rights is another. It is important to ensure that the statutory framework that has been spoken of comes to fore.
The philosophy of independent living speaks for itself.
Money is one thing. It is a lot and Senator MacSharry spoke a great deal about what the Government is not doing. However, a great deal more also could have been done in the boom times when there was a lot of money around. I would have liked many things to have been done that were not done. However, money is not everything and there is much that can be done. While everybody must cut the cloth according to the size of the budget one has at the moment, if every Department worked together to ensure it had a philosophy, such a philosophy, as well as the money, would do a lot.
In the area of education in particular, when one speaks about education and making available facilities, I refer to the philosophy the Minister of State herself is driving, namely, value for money and the policy review to let the person decide the services for himself or herself, rather than dictating to the people what services they need. Such people know best what they need, like the policy of the Minister for Health, Deputy Reilly, of the money following the patient. In this case, they are not patients but are able-bodied and willing for work, albeit with just a little help. Were money to follow the patient and were the person himself or herself to make the decision, that also really would make major inroads into the position under consideration today regarding the assisted decision-making process. I have long pages of notes on this issue but will skip them because much already has been said about its educational aspects. However, one point is that when Members discussed the issue of disability in the Chamber previously, it was noted the Minister, Deputy Quinn, had requested the National Economic and Social Council, NESC, to establish a working group. I understand it was established to consider a tailored allocation model for education in respect of these sectors of society.
I will take this opportunity to welcome the progress being made by the Government to empower people with disabilities, through the Minister of State's own area of responsibility, to make decisions about their own services through the planned introduction of the money-follows-the-client system. It is utterly unacceptable in the 21st century that people have no say in how their budget is managed themselves. They are as well able to decide as is the Minister or am I where and how that money should be spent. I believe it would be spent a lot better, were decisions made by the people themselves rather than decisions being made for them. They should choose the services of which they wish to avail rather than having the State or any such body make that choice for them. The old broken model of providing funding directly to service providers is incredibly restrictive and is a model that does not lead or give choice to the person availing of whatever service, be it a care service or whatever.
I note that funding in respect of the housing model was announced recently by the Minister of State's colleague, the Minister of State at the Department of the Environment, Community and Local Government, Deputy Jan O'Sullivan. I understand that €10 million was made available a couple of months ago for housing for people with disabilities, which is welcome, particularly in these stringent economic times. Everybody needs a good house and a good home because unless one has those, one has nothing. In addition, however, a home often can become a prison if people cannot leave it. They need just a little help to avail of services outside, even if it is only for communication with the outside. This leads on to better health, better involvement with the community and everything else that goes with it. Someone mentioned sport earlier and Members have seen what people can do for themselves in this regard, as well as what Eunice Shriver Kennedy did for the Special Olympics. Members will have seen how it means a lot when people are helped a little. I note the Acting Chairman is signalling to me. This is an important debate and I am delighted the Labour Party tabled this motion. Hopefully, further improvements will be seen in the future.
I am glad this motion has been tabled and in particular, that it is being debated in a spirit of responsibility and not political confrontation. It is important to appreciate that Members are talking about full rights as a citizen, not second-class citizenship in any sense. The real mark of a properly-functioning republic is it should cherish all sections of society equally and none more so than those who are most challenged in life. It probably is one reason I feel somewhat disheartened when people who experience disability must come to the gates of Leinster House - at great discomfort for and inconvenience to themselves - to demand what are their rights as a citizen. They really are coming for these rights, in addition to, as Senator MacSharry pointed out, the promises which have been made not by one single Government but by all Governments down through the years. There is no misunderstanding as to what are the issues in this regard because they have been debated repeatedly. There have been many committees and commissions down through the years and exactly what are the rights, requirements and necessities of this particular section of society have all been well documented. When one considers that between 18.5% and 19% of the population experience some level of disability, it is clear this pertains to a sizeable number of people. Much of what Members know would not have come to their notice without the representative organisations that bring to Members' notice the inadequacies, where such exist, the requirements and so on. All Members are aware that if one has experience of disability, one's cost of living is more expensive. This is a fundamental and well-documented issue because one must deal with adaptation, extra assistance and so on. However, the more I studied the Special Olympics down through the years and saw the sheer tenacity of character, dedication and commitment of people in the Special Olympics, the more I realised what they are capable of achieving against all the odds. Therefore, that properly-functioning republic I mentioned at the outset should take cognisance precisely of the great potential that exists within that section of the population comprising 18.5% to 19% of the total. Down through the years, I have watched representatives, particularly those who are experiencing disability themselves, put forward their cases in radio and television programmes and newspaper interviews. Moreover, a number of Members have direct experience in this regard. One cannot but say Members are aware of their responsibility. Today's debate really is only a blip on the radar because nothing particularly huge will come out of this, except what Members might do. It is important that they might coalesce all the efforts of legislators, because this is the only way in which some things that must be achieved will be achieved.
As for budgets, the bottom line should be that we absolutely sustain and maintain the core assistance to which this section of society is entitled. Any erosion of this would be completely against this debate and would be completely against the spirit of international legislation, from which Ireland appears to be backing off a little. This must be the starting point of any budgetary consideration and does not take into account the expansion of the assistance and the subventions that are required. Down through the years, the State has committed itself to having an employment target of 3% within the public sector for people who experience disabilities. In so far as progress has been made in this regard, it is known that those who took up those jobs were completely qualified for them. In my experience, one does not get into the area of differentiating in any way with the service that is provided.
The only reason we set a target of 3%, or any target for that matter, is that we did not deal with equality in respect of these people in the past. That is what we mean by equality and what I meant when I spoke about treating all sections of society equally. I was not asking that we give greater recognition to these people because if they get equal recognition, they will get their rights and that is what we are working towards.
There is a great opportunity in the Seanad when we have debates such as this and can leave the politics, partisanship and personalities to one side to discuss important issues such as this one. I know the Minister of State would be exceptionally well positioned and well focused on looking after those who are most vulnerable in society. One expects she and her officials will convey to the Minister the views they hear during this debate. They will hear that this issue is not a political football by any means. If we set targets we must implement them.
When I look back on where we have come from, we have made huge progress. Most of what is involved is of a tangible nature in being able to deal with the physical difficulties which come our way. Addressing the physical difficulties, certainly in the context of new planning legislation and in remedial works to existing buildings, is being advanced, although not necessarily fast enough. If we do not deal with the physical challenges people face, people who experience disabilities will not be able to take up certain types of employment. Likewise, they will not be able to live a full social life. The bottom line on all of this is social justice. Everything we talk about in terms of responsibility is underpinned by social justice, human rights, the rights of the individual. If we can move forward with that type of linguistic expression, we will get rid of compartmentalising a section of citizens who should not find themselves in that position. They should find that they are centre stage and mainstream, that they are not considered an afterthought or peripheral, and that they are central to every item of legislation, policy and budgetary consideration.
I am glad we are having this debate. I welcome the representatives who are present in the Visitors Gallery because any strategy we implement must be done in partnership with the representatives of that section of society in the same way as we did with the trade union movement during the good years of the Celtic tiger. That is exactly what we did. It is more important that such implementation does not take place in isolation from those who have the most knowledge, the most experience and the broadest understanding of how they can lead a full productive life. When a strategy is well founded and well meaning I do not believe any politician or public representative deliberately sets out on an issue such as this one to cloud over what must be done, but sometimes the implementation document is a bit lean on being inclusive of those who must be included. The strategy exists and if there is a weakness it is in its implementation. I suggest that even if it means pushing out the parameters a little on what normal procedures and protocol might be, there are times when one must be a little more ambitious and radical on issues such as this one. We are all aware of the recessionary constraints and we would only be exploiting a situation if we did not keep that in the back of our minds but there are times, even with the moneys available-----
If any good were to come out of this debate, it would be that the Minister might focus on the implementation aspect. The strategy is probably sufficient. I apologise for exceeding my time but it was not brought to my notice.
I welcome the Minister of State to the House, particularly when we are supporting this worthy motion. I have the greatest admiration for people with disabilities, people in wheelchairs and people who are living independently. We should do everything in our power to protect them. I spent about seven years back in the 1980s raising money for the Irish Wheelchair Association doing walks in the Holly Land. I personally raised more than £50,000 at the time and was delighted to have done so. Given all that, I have a personal affinity with all these people who unfortunately are confined to a wheelchair.
I know Tom Chambers in Mayo and he does a great deal of good work related to disability access to public buildings. Unfortunately, there are still many public buildings that have decided not to do anything to cater for people with disabilities. There are many banks to which access can only be gained by climbing up steps - I know of a few of them. I know Tom Cunningham in Gurteen in County Sligo. Tom is wheelchair bound and he goes to my town to play cards every Tuesday night. He is living independently and does everything a normal person does. I also know the one and only Mary Ganley who works in Roscommon with the disability service and she does an amazing job and deserves a great deal of credit. I have known Mary since I was growing up when we used to go dancing in the Casino in Castlerea and Mary was out on the middle of the floor in her wheelchair jiving. I would say if the Casino was still going Mary would be still going.
It is essential that all of these people's personal assistants, PAs, are protected and that we ensure there is more investment in this area and that there will be no further cutbacks. I know that Mary Ganley goes to work every day. She does an amazing job. Like her and everybody else I know who are living independently, they are intelligent people. They are very clever and witty. They have immense ability. They do not view themselves as having a major disability. They consider themselves to be the same as ourselves, they only difference is that they are in wheelchairs and, fortunately for us, we are not.
I listened to the Senator van Turnhout's contribution and she covered everything, including all the obstacles that, heretofore, had confronted people with disabilities. I hope we are moving towards dealing with all of those issues in the immediate future and I am optimistic that we will. The notion that we should not look after people in their own homes and should consider putting them into residential institutions is a nonsense, apart from the fact that it definitely will cost much more to do that.
I have concerns that have come to light in recent times regarding all the people who have disabilities, including people in wheelchairs, who we hear have had their medical cards removed by the nonsense that is going on in the PCRS. I have an Adjournment matter on that issue tabled to the Minister after this debate and I will go into it in more detail. Those kinds of situations do not help anybody and it certainly does not help people with disabilities to have the stress of dealing with medical cards, knowing that their card is being removed when they know they should be entitled to it.
All people should be equal and, unfortunately, for too many years some people have been more equal than others in this society. Let us look after the people with disabilities and the people who want to live independently in this society.
I welcome the Minister of State to the House. I also welcome the opportunity to take part in this debate and welcome the individuals from the Centre for Independent Living who are present in the Visitors Gallery. It is a sign of how far we still need to go that this Chamber can only facilitate a very small number of people who have motorised vehicles or a wheelchair. We still have a long way to go even as a State in supporting people with a disability to live normal and independent lives.
I recognise that some positive changes have been brought about by this Government and measures were brought forward by the previous Government.
I support the motion with reservations because on previous occasions when we have discussed supports for people with disabilities, I have been critical of cutbacks in this area. I will restate my criticisms today because it is regrettable that resources have been taken away from people who desperately need them to live independently and enjoy a decent quality of life. My party supports the personal assistance service, PAS, the aim of which is to enable people with disabilities to live full and independent lives. However, if the goal is full participation in society, which Sinn Féin believes is legitimate and achievable, it is incumbent on the Government to ensure the service is adequately resourced. We will vote in favour of the motion but we have concerns about the funding of services for people with disabilities. The PAS aims to provide the assistance required by an individual with a disability to allow him or her to participate as a full and equal member of society. I doubt any Senator or the Minister of State would disagree with that aim but, unfortunately, it is not a reality for the many people who are not in a position to become full and equal members of society simply because we have not put the necessary resources in place. We do not yet have rights-based legislation that would support people with disabilities in this State. We have a long road to travel in this regard.
The remit of a personal assistant extends to all areas of life assistance for a person with a disability, including personal, social and employment needs both inside and outside of the home. The philosophy underpinning the service is empowerment and independence. This goes to the heart of why it is important to make the personal assistant system available to all who need it. Independence is a fundamental principle. A fully resourced and functioning PAS should lead to self-empowerment for a person with a disability, enabling him or her to overcome the disadvantages imposed by physical and sensory impairments.
People with disabilities who are in receipt of personal assistance do not receive a set number of hours because they act as leaders in directing the personal assistance in ways that can maximise their life opportunities. It is important, therefore, to recognise that the principle of personal empowerment distinguishes the PAS from home help services. Sometimes we fail to make that distinction, however. While home help is an important service, it lacks the empowerment aspect that is at the centre of the PAS. Under the home help service model, professionals decide the individual's needs and the emphasis is on providing basic personal care such as dressing and bathing. No consideration is given to an individual's ability to exercise control or choice over the provision and function of his or her supports. At a fundamental level, the PAS recognises and validates the right of people with disabilities to have autonomy and control over crucial aspects of their lives. The PAS offers an independent lifestyle not only to the person with the disability but also his or her family.
Without the PAS, there is a real danger that a person with a disability would be consigned to residential or institutional care. My party fully supports the de-institutionalisation of care and support for people with disabilities. This in area in which we can save money. Advocacy groups representing people with disabilities can point to numerous cases in which individuals were put into institutionalised care even though they would have chosen to live independently at home if the resources had been made available. The key issue arising is the failure of this State to provide a legislative grounding for a properly resourced and user-centred disability policy. We can put in place legislation, pass motions and say all the right things, but unless the resources are in place to back up our commitments, they do not mean anything.
I thank Senators for their contributions. It is always worthwhile to come to the Seanad during Private Members' business because, as Senator Ó Murchú rightly noted, it is possible to have a debate that is not party political or about kicking the Minister. There are, of course, times when kicking the Minister is important, but when we are discussing an area in transition, such as disability services, it is important to have an intelligent and worthwhile discussion. Senator van Turnhout, who has temporarily stepped out of the Chamber, is always a good contributor to debates but, in regard to her comment on people with disabilities being afraid to complain, she must be meeting different people with disabilities from those I am meeting because they have no difficulty complaining to me. I suppose that is because they recognise that I will listen and, if at all possible, respond to their complaints. It is important that people be able to express their views and equally important they are listened to. I take that part of my job very seriously. I thank Labour Party Senators for giving me an opportunity to respond to their motion, to outline the Government's commitment to the provision of effective and responsive public services for people with disabilities and to reaffirm strongly the Government's commitment to the national disability strategy.
The Government intends to proceed to ratify the UN Convention on the Rights of Persons with Disabilities, UNCRPD, at the earliest opportunity. Ireland does not become party to any treaty until it is first in a position to comply with the obligations imposed by it, including the amendment of domestic law where necessary. An interdepartmental committee on the convention is reviewing the remaining legislative and administrative actions required to enable ratification. One of the key requirements is the enactment of legislation on capacity. The programme for Government commits us to introducing a Bill in line with the UNCRPD. The Assisted Decision-Making (Capacity) Bill 2013 provides a series of options to support people with impaired capacity to make decisions and exercise their basic rights in line with the principles of the convention.
I think everyone knows at this stage that the Minister for Justice and Equality, Deputy Shatter, has resigned. I compliment Deputy Shatter on the huge support he has offered me in preparing the Bill. This legislation would never have seen the light of day if not for his drive and commitment to human rights and his liberal agenda for people with disabilities.
The Bill will go to Committee Stage shortly. While I am conscious that I may run out of time, it is important to note that, as a result of our extensive consultation on this legislation and with the support of the then Minister for Justice and Equality, Deputy Shatter, the Israeli Government has put on hold its capacity legislation on the basis that it will probably adopt our legislation once completed. This is a compliment to the individuals who are working on this legislation. We could not have a better person than Professor Gerard Quinn, who has already been mentioned, advising us.
People with disabilities can face challenges when participating in many everyday activities. Every sector of society must break down barriers to ensure equal participation. In this regard, the national disability strategy plays a key role. The programme for Government committed us to the publication of a national disability strategy implementation plan. I concur with Senator Ó Murchú's point that implementation will be the most important issue. When we entered government there was no implementation plan in place. An extensive plan is now in place. I compliment the members of the group, not only representatives of service providers but also persons with disabilities and the Centres for Independent Living. While the plan does not include everything we want, it will mark a significant step forward and will be augmented as the country's circumstances improve.
I chair the national disability strategy implementation group, which developed the plan and is also tasked with monitoring its implementation. The plan seeks to ensure available resources are used to best effect to ensure people with disabilities have more choice and control in their lives to help them to achieve their aspirations. Progress is reviewed by the implementation group and thematic meetings deal with specific issues. Such meetings are attended by all relevant bodies to ensure cross-sectoral input and review. Two such thematic meetings have taken place, one focused on Irish Sign Language and a second focused on housing. I am still fascinated and amazed by the fact that I am the Minister in attendance for debates on the Special Olympics. Surely the Minister of State with responsibility for sport should be in attendance for such debates. Surely debates in the House on housing for people with disabilities should be attended by the Minister for the Environment, Community and Local Government.
I accept the point made by Senator van Turnhout on this matter. Why do we insist on having disability rooted in the area of health? If I manage to change that, it will be a significant achievement.
In addition to ongoing implementation of the actions being undertaken under the national disability strategy implementation plan, a key initiative is being progressed with regard to employment. Work has a central role in most people's lives and its benefits are as important for people with disabilities as they are for others in society. We are committed to publishing a comprehensive employment strategy for people with disabilities, the aim of which will be to ensure more people with disabilities can access work, services at local level are co-ordinated and there is joined-up access across agency boundaries to deliver more seamless supports. I will probably find the Minister for Social Protection waiting for me outside the door if she hears me state that I fully concur with Mr. Martin Naughten when he asks how we can possibly have a comprehensive employment strategy if we do not allow people with disabilities to be considered unemployed. I know this is a sensitive issue and many people with disabilities do not wish to be included in the unemployment figures but that decision must be a matter of choice. We must give people with disabilities the option of being included in the unemployment statistics.
The development of the comprehensive employment strategy is bringing together actions by different Departments and State agencies in a concerted effort to address barriers that impact on the employment of people with disabilities. Significant work has been undertaken and a draft strategy is being reviewed and will be discussed further at the upcoming meeting of the national disability strategy implementation group. Its publication is included in the Department of Enterprise, Trade and Employment's Action Plan for Jobs 2014 and its subsequent implementation will be overseen by the Cabinet committee on Pathways to Work. This Government has protected the provision for special educational spending since coming into office. Some €1.3 billion will be spent in support of children with special educational needs this year. We must stop talking about the €1.4 billion that is spent on disability in the health area because €6.4 billion is being spent on disability across all areas.
There are now a greater number of special needs assistants, SNAs, and resource teachers in schools than at any time previously. The provision has been increased by 390 SNA posts, resulting in 10,965 SNA posts being made available for allocation by the end of 2014. An additional 480 resource teaching posts have been made available for the current school year to meet growing demand from schools for low incidence special educational needs support. This brings to more than 10,700 the number of resource teaching and learning support teachers in mainstream schools, which is more than at any time previously. This year, provision is also made for enhanced capitation payments for special schools or specialist schools, as I describe them, and special classes, specialist transport arrangements and assistive technology support.
This Government also encourages and facilitates the participation of young adults, including people with disabilities, in further education and training programmes and provides funding for a range of educational and training programmes that offer guidance, access, transfer and progression opportunities for learners along the national framework for qualifications. These include: the back to education initiative; support for learners attending courses through the provision of payments, allowances, and maintenance grants; the fund for students with disabilities, which supports full-time students with disabilities in further and higher education institutions; SOLAS specialist training providers to people with disabilities, with 2,110 places available annually in specialist training provision; and the disability access route to education scheme, which provides a third level admissions scheme for school leavers.
The Government currently provides funding of more than €1.4 billion to the Health Service Executive's disability services programme and is committed to protecting front-line services for people with disabilities to the greatest possible extent. We all recognise the circumstances in which the country finds itself. In 2014, the Health Service Executive is seeking to maximise the provision of services within available resources by providing the following specialist disability services: residential services to more than 9,000 people; day services to more than 22,000 people; respite residential support for nearly 6,000 people; and 3.7 million personal assistant-home support hours.
Senator van Turnhout has a particular interest in this area and is always well informed. However, it is wrong to continue to argue that there is no difference between the level of resources provided for school leavers this year and in previous years or to refer to bits and pieces of places. This year, for the first time, we have a plan that is based on evidence. Additional funding of €14 million has been provided to address priority needs within disability services identified by the Minister and advised to the HSE. Some €7 million of this sum has been allocated for additional places for school leavers and rehabilitative training graduates, with a further €3 million allocated for emergency residential placements and €4 million to deliver an increase in services for children with disabilities, including autism, and reduce waiting lists. These services are being provided in the community for children aged from birth to 18 years to ensure children do not have to be accessing any particular service to secure an intervention.
To maintain current service levels while supporting people to achieve their full potential, including living as independently as possible, significant reconfiguration of existing resources will be required. This will be in line with the recommendations in the value for money and policy review of disability services, with new and sustainable models of service being implemented to meet changing needs and increasing demographic pressures. Our focus is to bring about reform that will positively impact on the way in which people with disabilities are supported to live the lives of their choice. In addition, throughout 2014 the Health Information and Quality Authority will continue to register and monitor standards in designated residential centres for people with disabilities. This practice, which has been called for by the disability sector for a number of years, commenced in November 2013. I note the presence in the Gallery of Mr. John Dolan who has been making this call for some time.
I note that Mr. John Dolan is in the Gallery and this is something he has been seeking for some time.
For some people with a disability, a direct funding model may be the best approach so that individuals with a disability can receive direct payments to manage their own personal assistance service. The Government will support the provision of a personal assistance service within the overall framework of the migration to a person-centred supports model and individualised funding, in the context of the implementation of the value for money review by the HSE and the Department of Health. In response to what Senator van Turnhout said, the value for money review was never about saving money but about finding out what value we were getting for the money we were spending and ensuring that value was delivered to the person in need of the service.
In essence, individualised budgeting gives more choice and control over how moneys allocated to meet an individual's needs are utilised. This might or might not involve the transfer of funds to the individual. The move towards an individualised budgeting framework raises legal and practical issues and will require careful consideration and possibly legislation in due course.
Demonstration projects are already under way to examine the practical aspects of introducing this major change and to establish the costs and benefits. An analysis of the projects will commence towards the end of 2014. The balance and emphasis will shift towards these new models once sufficient analysis is carried out.
The role of a personal assistant is to assist a person with a disability to maximise their independence through supporting them to live and to access community facilities. The PA works on a one-to-one basis, in the home or in the community. A vital element is the full involvement of the individual. We acknowledge the role of PA services in supporting the person with a disability to realise the entitlements set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities.
The HSE provides a range of assisted living services, including PA services to support individuals to maximise their capacity to live full and independent lives. While the resources for the provision of assisted living services available are substantial, they are finite. Services are determined by the needs of the individual, compliance with prioritisation criteria and the level of resources available. In the normal course of service delivery, reviews are undertaken throughout the year to ensure that if needs change, which may mean increased needs or reduced needs, the service provided will address this change within the overall available resources.
I welcome the opportunity provided by this debate to put on the record the Government's position on services for people with disabilities. There is an onus on us all to use the substantial resources committed to disability services across the public sector more efficiently, but also to achieve better outcomes for that funding and to bring about a real and substantial improvement in the lives of people with disabilities. This is a central tenet of the national disability strategy and a high priority for me. As the country's economy and circumstances improve, I am sure we can build on the substantial work already done.
I welcome the Minister of State to the House. I welcome the motion tabled by the Labour Senators. I welcome Mr. Gary Lee from the Centre for Independent Living, Mr. John Dolan from the Disability Federation of Ireland and all of our guests this evening. I strongly support the statements of my fellow Senators as well as the necessary legislative and administrative requirements to ratify the UN Convention on the Rights of Persons with Disabilities.
I wish to focus on the right to a medical card of disabled people with a long-term illness. Our responsibility, apart from Article 19 of the UN Convention on the Rights of Persons with Disabilities is, as recommended by the United Nations report on children, that the State's demand to involve the finances of parents or guardians should cease forthwith. I fully agree with having universal health care in the future for all our citizens. We should surely get our house in order and take care of our most vulnerable before we declare that every child aged under six can have free GP care when people I know, who are disabled and very ill, do not have access to free GP care.
I refer to a lady in south Dublin, whom I believe the Minister of State knows. She has a lovely little boy who is disabled. This afternoon I spoke to his mother who feels that we have completely abandoned him and that he is being treated as a non-person and not a citizen in our country. I feel he is an ambassador for other gravely disabled people who have had that dreaded phone call - I am sure the Minister of State has friends who have had such phone calls - to say that the medical card will be withdrawn. The person then has to fill many forms and get them completed by the GP. This leads to much more stress and agony.
That is what has happened with this child. Two weeks ago the medical card was taken away. Before his medical card was taken and after his family had begged, reapplied and phoned, the HSE advised the entire family, comprising two healthy children, two healthy parents and a gravely disabled sick child, to apply for medical cards. They all had to go to the GP to go back over two years' records and fill out several forms. Two weeks ago they were rejected.
This little boy is tube fed and incontinent. He will never walk, talk or kick a football. This little boy will never be employed or educated. However, he has a wonderful smile and is the light of his family's life. He appeared on "The Saturday Night Show" the other night. Every month he needs approximately €1,200 worth of syringes, tube feeding bags and other horrible bits and pieces such as nappies just to keep him going. His parents do not want complete help from the State. They are well able to work, even though they never get any sleep. They are determined to make good lives for themselves and their other children. They are not looking for charity but they are not millionaires. As the Minister of State knows, nobody can keep up with the needs of a disabled person.
When this mother, a very articulate lady, got the phone call the other day, she burst out crying. She is distraught and is a broken person. She feels like giving up. Her family is saving us a fortune given that they look after this child full-time.
A friend of theirs has a child with Prader-Willi syndrome. Last year she got a similar letter. That mother is broken. The child had two spinal injury surgeries in Our Lady's Children's Hospital in Crumlin last year and is now at home with no medical card. There are people who are disabled who cannot complain because they do not have the strength. I feel bad standing up here because I do not know how hard it is. The people in the Gallery are the ones who should be standing up here.
I apologise to the Senators because I know I have digressed from the motion. I feel this is a really topical issue at the moment. I encourage the Minister of State to tell her friend, the Minister, Deputy Reilly, that we had a great debate here this evening and we need to ratify the UN Convention on the Rights of Persons with Disabilities, but we also need to ratify the medical needs of people with disabilities.
While I know I should not speak about individual cases, let this child be an ambassador for other people with disabilities because these are desperate people. These people are much more vulnerable. While I do not want to single out people who need medical cards, these are people who cannot swallow or stand or go to the toilet on their own.
I apologise to the Minister of State. Unfortunately I could not get out of a prior commitment this afternoon that was ahead of the motion being tabled. I welcome to Seanad Éireann the people from the Centre for Independent Living, whom I met today, and some of the other people who have been key campaigners in the disability area, in particular Mr. John Dolan. When I arrived in my office in Leinster House this morning I received two manifestos, one for the European Parliament elections and one for the local government elections. While I have not yet read them yet, I have no doubt that the content is super. I encourage all Oireachtas Members to take due note of the manifesto from the Disability Federation of Ireland.
I commend the Labour Party Senators on tabling this extremely important motion.
We are more than three years in government and there is an expectation that things should be moving a little bit quicker than they are. This is not down to our good friend, the Minister of State, Deputy Kathleen Lynch, who, unfortunately, is dealing with a system that is extremely cumbersome and it takes time to change it. As a matter of fact, if the Minister of State, Deputy Lynch, was not at the helm in the Department of Justice and Equality and in the Department of Health, progress would be a lot slower. We need to look at the glass as being half full but it is very easy to look at it as being half empty; it should be full, not empty. In my view, at this stage in government we should have ratified the convention on the rights of people with disabilities but we have not. All we can do is make sure it happens and I have no doubt that it will happen.
At this point it is appropriate to acknowledge the contribution and commitment of former Minister for Justice and Equality, Deputy Alan Shatter, in this regard. What seems to have gone missing from the public discourse about the former Minister is the fact that he was an extremely liberal Minister, a Minister who was committed to equal rights for everyone and equal rights for people with disabilities. I have had numerous conversations with him in which he spoke passionately about his belief that we should want to live in a society of zero barriers, where everybody could play to his or her full strengths. That is what we are discussing in this motion. The concept of a personal assistant is to ensure that people can participate in what is a democratic society to their fullest potential. It is to ensure that people can do day-day-day activities such as going on a bus with their peers and attend school and college with their peers and where they can play to their strengths; where having a disability does not affect their ability; and where they can be in a situation where they are not compromised or not at a disadvantage to their peers. Nobody wants any advantages over any other citizen in society. All people with disabilities want is a level playing pitch. When a level playing pitch exists, then people can play to their strengths and can reach their potential.
When I was in college in UCD back in the 1990s, the whole concept of independent living and the Centres for Independent Living was formulating. It was a fantastic concept. The breaking down of barriers was endless. The opportunity arising from this concept becoming a reality was phenomenal. More than 20 years later it has achieved a lot but it could achieve a lot more if it received the type of engagement, support and recognition that the document sitting on the shelves of the Department of Health and which has been signed up to by all stakeholders, were published and was to become the policy and the standard-bearer. It has the imprimaturof all the various organisations and stakeholders such as the Centres for Independent Living and crucially, the HSE.
I call for that document to be published and to become the bible of moving forward with the Centres for Independent Living and the personal assistants throughout the country who do a phenomenal job. As Senator Mary Ann O'Brien said, it would cost the country a lot more if the PA structure did not exist. It has so much more potential to create the type of equal society that we all talk about.
I refer to what Senator O'Brien said about medical cards. To be honest, the discretionary medical card issue has turned out to be an unmitigated disaster. I do not think any fair-minded person would defend it. It is up to the Government to resolve the issue as a matter of urgency. I echo her suggestion about the Minister of State, Deputy Lynch, having a word with the Minister for Health, Deputy Reilly. I have already had a word with him on this important issue. Those types of scenarios should not happen and they are indefensible.
This motion is to be commended. Seanad Éireann should be holding the Government to account on issues such as this. The Minister of State has given us some comfort by outlining what has happened and what is happening and her own commitment. As she said, it should be the Minister responsible for sports who should talk about sport and the Special Olympics but it is up to the Government to make it happen and I have every faith that the Minister of State will drive that.
My contribution will not be in my own words but in the words of the Disability Federation of Ireland and of those involved at the coalface. Our role should be to act as a voice, as Senator O'Brien very eloquently and very emotionally put it in her contribution.
I immediately thought of Senator Mary Moran when I read the motion. We share a common bond in that both of us are parents of a person with Prader Willi condition. Listening to Senator O'Brien, I thank God that we have the financial capacity to be able to look after our Siobhán who is now 23, who can live at home and who lives, within the confines of her condition, an independent life and she is the apple of our eye. I understand perfectly the point the Senator is making.
I have dealings in County Leitrim with the Leitrim Association for People with Disabilities and I commend the work they do and their director, Rosaleen Keilthy, who keeps me fully informed whenever there is a need to lobby the Government and to ensure that I give my full support to the motion and to give the Minister of State whatever support is necessary.
I refer to the report of Disability Federation of Ireland. I acknowledge the presence of representatives in the Public Gallery who will recognise their own words:
The small group who established the personal assistance service for themselves and others in the early 1990s had a clear appreciation of what the service was about, namely, self-empowerment to overcome the disadvantage imposed by physical and sensory impairments. Since then, the empowering concept behind the service has been weakened.Thirty interviews were carried out which came to conclusions in this report. I am reading from some elements of the executive summary of which I am sure the Minister of State is aware. The interviews reveal that many new entrants to the service have less control over their service. It came under stress when the Government took over funding responsibility in the mid-1990s and the administration and training aspects became the responsibility primarily of a voluntary service-provider organisation. Subsequently, the emphasis has shifted to providing for basic personal care needs such as dressing and toileting, with less attention to supports for independent living. With the arrival of austerity, funding for the service has decreased. Not only were more recent entrants likely to have less personal assistance hours to manage, but they also seemed more apprehensive about the future. They worried about the level of their service being sustained, about getting increased hours when their condition worsened or if they wished to leave the parental home. In summary, the research found that the original model of the PA service established by the pioneers has been undermined. Restoring the focus on enabling independent living as well as covering basic care needs would strengthen the service effectiveness for progressing the Government's policy objectives. It would enable service recipients to pursue meaningful lives as they so determine and to continue expanding extending mainstreaming in the footsteps of the pioneers from two decades ago.
The report lists extensive recommendations but because of time constraints I have chosen just a number of them to put on the record of the House. Under the heading of recognition for the PA service, one of the recommendations is that in keeping with Article 19 of the United Nations Convention on the Rights of Persons with Disabilities, the Department of Justice and Equality should examine the case for establishing the PA service on a statutory basis as one of the supports enabling disabled people to participate as full participants. The wording of the final part of this motion is mirroring the recommendation of Disability Federation of Ireland and it has been addressed by the Minister of State.
The report recommends that since the PA service is exceptional in how it facilitates social inclusion, the Government, especially the Department of Public Expenditure and Reform, should explore new ways of funding the service. A national disability insurance scheme similar to that introduced in Australia could ensure secure funding. Another possibility is the establishment of a fund for independent living. It also recommends that the HSE urgently needs to engage with leaders and others in the disability sector to clarify what constitutes a PA service and to put the agreed definition into practice because this seems to be a grey area. Pathways to direct payments where a leader can become the employer also needs to be developed, based on learning from international as well as Irish experience.
A rigorous evaluation of the likely impact of any proposed policy changes on Article 19 commitments is essential and must be evidenced in the Government's national disability strategy implementation plan. According to the report, the co-ordination achieved to date under the national disability strategy has been disappointing. Performance by Departments and State agencies needs to markedly improve. Given the rapid pace of change in policy on personal supports and independent living, it would make sense for the Disability Federation of Ireland or another voluntary disability organisation to repeat this review of leader experience in a few years.
I thank the Minister of State for coming to the House. She never shirks her responsibilities and always comes to the Seanad to answer questions.
Senator MacSharry expressed surprise that a group of Government Senators have tabled this motion. Being a member of a Government party does not mean one will not highlight the difficulties faced by people with disabilities and inadequacies in disability services. We will do our best to ensure the issue of disability is on the front rather than back burner so as to ensure progress is made on the matter. There is nothing wrong with a group of Government Senators highlighting this issue and I am pleased and grateful that all parties have agreed to support the motion.
The Minister of State is passionate that people should live independently in the community, especially those with mental health issues. I have worked closely with her on this issue on a number of occasions. She has stood firm in her beliefs, despite fierce opposition to her proposals, because she believes the community is the appropriate place for people with mental heath issues to live, albeit with assistance. Psychiatric nurses visit people living independently in their homes and care assistants and psychiatry services are also provided in the home setting. Thank God everything is working out well for them. The Minister of State's position has been vindicated, as I hope and trust those who are living independently in the community will agree.
Some people embrace change, while others reject it or find it difficult to accept. As the Minister of State noted, everything is rooted in health. The Joint Committee on Education and Social Protection spent two hours discussing this issue this morning with the Carers Association of Ireland and a representatives of the peer support group, WALK. Given that people with disabilities are not sick, disability should not be treated as a health issue. The joint committee discussed access to education and employment and the issues raised by the Minister of State. A person in a wheelchair is not sick and may have a fantastic mind. My daughter worked with a young man who was paralysed from the neck down as a result of a rugby accident. He worked in a financial institution with the aid of a personal assistant. While his body may have let him down, his mind is good and he has much to offer society and employers. I am pleased he is working with the aid of an assistant, which he needs because he cannot drink water independently or even scratch his nose. We must ensure assistance services remain available.
While there is no centre for independent living in County Kerry - the nearest is in Cork - we have the Kerry Cheshire homes. These facilities are similar to the Centres for Independent Living. Residents live independently in apartments and have access to care and nursing assistance.
Early intervention must be provided before people can be enabled to live independently. Last week, I attended a public meeting with the parents of children living in St. Francis's special school in Beaufort. They advised that as a result of service reconfiguration, services at the school had been reduced to 10% of the original provision and they no longer had a service on campus. They are meeting the Minister for Health next Saturday to outline the problems they face. I ask the Minister of State to row in behind them to ensure their services, including speech therapy, occupational therapy and physiotherapy, are restored.
I had a meeting recently in the Mansion House with a group of people who are living with neurological disease. Someone - perhaps it was Mr. John Doran - stated the issue was similar to fighting a fire as no one knows when or where the next one will break it. The next fire could occur in any of our homes through an accident or sporting injury that results in someone being confined to a wheelchair and requiring a personal assistant. While we have our health, we should fight to ensure services are provided to those who need them.
I thank Labour Party Senators for tabling the motion. This has been a good debate, to which I propose to make a very short contribution. On the issue of people with disabilities returning to work, I recently dealt with a case involving a person who lives in an area of high unemployment - the Minister of State will be familiar with the area - and returned to employment for 20 hours per week. He wanted to work despite being highly restricted in his movement. However, the support provided to him when he did not have a job was subsequently withdrawn. This should not be a black and white issue because people with disabilities need their services.
Consultations have taken place with representatives of IBEC, the chambers of commerce and the trade unions. Consultations should also be held with Departments to ensure flexibility is shown to people with disabilities who find employment. They must retain the supports provided previously when they return to work. The individual whose case I raise required physiotherapy three times per week to enable him to work. When his medical card was withdrawn he could not afford physiotherapy and had to give up his job. He was back at square 1, although in fairness to the officials responsible for medical cards, they accepted the strong case I made on his behalf and accommodated him for six months. I hope this period will be extended. Government services must show flexibility on this issue.
The significance of the personal assistance service for people with disability is clear. In that context, Sinn Féin supports the motion, albeit with reservations, as my colleague, Senator Cullinane, outlined. Since the foundation of the State in 1922, Ireland has failed to treat differently-abled people with respect and dignity and has not provided the structures and resources they require to live independent and empowering lives. Thus far, the State has also failed to ratify the United Nations Convention on the Rights of Persons with Disabilities. It has failed abysmally on the issues of living conditions and access to health, education and employment for people with disabilities.
Much has been revealed in recent years about the inhumane treatment of disabled people who, through no fault of their own, found themselves in the care of the State or its proxies. It is now generally accepted that the warehousing of disabled people in institutions was inhumane by any standards and a denial of their right to live with autonomy, dignity and respect. The move away from this system and the conscious and deliberate policy shift towards de-institutionalisation is, in the context of that which preceded it, undoubtedly a step in the right direction. However, the national disability strategy whose primary aim was de-institutionalisation is ten years old. As legislators, we are entitled to ask what has changed in the past decade, whether services have improved, if an infrastructural and legislative framework has been put in place to vindicate the rights of differently abled people and whether the State has put in place the funding and resources necessary to ensure disabled people can live empowering and decent lives. Unfortunately, the answer to all these questions is "No".
Obviously, the Government parties will defend their record in government and today's charade is one element of their defence. It is a fact, however, as demonstrated by all the evidence, research and reports, that on all the key indicators, for example, access to employment, education, health and housing, life for disabled people is exceptionally tough. Put another way, access to life chances and the crucial social services that are essential for meaningful and genuine participation in society remains in many respects out of reach for disabled people. Thus, they are more prone to poverty, unemployment, ill-health and neglect. This has been exacerbated by the policies of austerity embraced by the Government.
With all due respect to my Labour Party colleagues, it is difficult to support this motion and the policies that underpin it. Lofty aspirations and politically correct discourse do little to improve the lives of disabled people. As those present in the Gallery know only too well, policies that are not adequately resourced are nothing more than an exercise in optics and political game-playing.
Policies that are not adequately resourced are nothing more than an exercise in optics and political game playing.
It is now 2014 and it is simply not good enough that an individual's personal assistance hours can be reduced following a service review, in other words when service demands result in one individual's service being cut to address the priority needs of another person with a disability. Sinn Féin is also very concerned by the shift to individual assessment. While this all sounds fine in theory, in practice it is being used to conceal that the Government is cutting important services to disabled people.
When it comes to policy and services for disabled people we need to acknowledge that they and their families know best. We must also follow international best practice. Thus far the State has failed to do both with the result that disabled people are discriminated against and excluded from full participation in society on their terms. Sinn Féin is of the view that the failure to fully vindicate the rights of disabled people rests firmly with the State and with this and successive governments. Disability should not, of itself, predetermine a life that is characterised by a lack of independence, excessive State supervision and dependency. We believe that exclusion, discrimination and poverty are all evidence of the institutional and structural failures of the State.
We need to listen to disabled people and take seriously the recommendations they make when it comes to policies that have a huge bearing on how they live their lives. In the final analysis, disability is not the problem. The key issue is the failure of the State to give legislative grounding to a properly resourced and user-centred disability policy, where the buck stops with the State.
I welcome the Minister of State and I congratulate the Senators who tabled the splendidly worded motion; I wish it every success.
One of the problems that has disturbed and distorted the work of the House since we were elected three years ago is that we have to give €85 billion to banks. On today's Order of Business we discussed terms of reference of the banking inquiry and that yet another insurance company is gone. We all want that money to go to anywhere else other than to those banks. What we are discussing today is what we miss out on. We regret as much as anybody that the Exchequer was just emptied in such a terrible way. That makes it difficult to meet the needs that are so well described in the motion and it deprives vital funds from going to address goals we all share. I wish to reassure those in the Gallery that we did not embrace austerity; we were forced at the peril of bankruptcy to spend that money. We would have much preferred to look after the people who are disabled and who are with us today. It is about self-empowerment and independent living.
Some progress is being made. In my examination in TCD tomorrow approximately six students will sit special examinations. They have gone right through the leaving certificate examinations and have come in under special entry categories. Tomorrow is their degree day and they have been an absolute credit. I hope the market will realise that in a smart intelligence-based economy based on computing and call centres relating with the public, the fact that some people do not have physical strength should not be a deterrent. As Senator Maloney has just told us, they are not sick. Participation in the community is supported of course.
One of the minor things that occurs to me is that the transport needs of disabled people are being disrupted by people who use their parking spaces. There was even a racket of forging disabled parking permits at one stage. I hope the Minister for Transport, Tourism and Sport, Deputy Varadkar, adds extra penalty points to that because it is a heinous thing to do.
We support their equal participation through the Special Olympics and sports organisations. The facilities at venues and the games that disabled people can play are all wonderful things. I thank Senator Ó Clochartaigh for sharing time with me. We will do whatever we can as the situation improves. When this Minister of State comes in, she knows in Seanad Éireann she will be pushing an open door. I regret that the other things happened because they created the kinds of problems we all wish to see corrected. I thank those who came to our debate today; we are very definitely on their side and we will do whatever we can. It is really difficult in the present situation and I very much resent that and the people who caused it.
I thank the Minister of State, Deputy Kathleen Lynch, for coming to the House and giving us such a comprehensive outline of what she is doing and what has been going on. I thank my colleagues, almost all of whom supported the motion. I believe everyone supported the principle and spirit of it. I also welcome the representatives of the Disability Federation of Ireland. I also mention Mr. Michael McCabe, the chair of the Centre for Independent Living, who has been hugely instrumental in putting this together along with his colleagues Gary Lee and Nina Byrne, who are present in the Gallery.
The Minister of State, Deputy Kathleen Lynch, mentioned the resignation of the former Minister, Deputy Shatter, which occurred as we were speaking. He has been a very enlightened reforming Minister for Justice and Equality in many areas, disability rights being one of those.
I thank the Minister of State, Deputy Kathleen Lynch, for giving us such a comprehensive speech and in particular for challenging the rooting of disability issues in Department of Health, which we all recognise as problematic. She spoke very candidly about unemployment and disability. I am very glad that the Department of Jobs, Enterprise and Innovation is developing the employment strategy for persons with disabilities.
I am very glad that she expressed the Government's support for the provision of personal assistance services, which goes to the heart of the motion. We all take the point, as Senator Barrett has said, that it would be done in the context of the current economic climate and also in the context of a broader movement to individualised funding. I thank her for outlining the progress, which is very helpful for all of us and our visitors to hear. In particular she told us that the analysis of the demonstration projects looking at the practical impact of this move to individualised funding will commence this year. I also note her comment that legislation may be required to underpin the move to individualised budgeting and to this new framework. We all look forward to working with her and her officials on that. She also said that as the economy improves we can certainly build on the substantial work already done in this area.
All of us referred to the themes of empowerment and independent living, and also to autonomy and leadership. We all share the view that we must ensure that policies on disability and disability rights take those issues into account and prioritise them. We all see Government support for the provision of personal assistance services as a first step to a more formal recognition of the vindication of the rights of persons with disabilities under Article 19 of the convention. That is the starting point of the motion and that is where it would be appropriate to finish.