Ivana Bacik (Independent) | Oireachtas source

I move:

“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.”.

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.
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.