Thomas Pringle (Donegal, Independent) | Oireachtas source

I move:

That Dáil Éireann: notes that:

— in March 2018, Ireland formally ratified the United Nations Convention on the Rights of People with Disabilities (UNCRPD), which under Article 19 states that disabled people have the right to live in the community and have access to a range of in-home and other supports, including personal assistance to support this;

— personal assistance service is a tool that allows disabled people to live independently, providing individuals with the freedom and flexibility they need to live their lives as they choose;

— independent living means an individual can live with the freedom and control to have the same choices in life that everyone else has in terms of housing, transportation, education and employment;

— with personal assistance services, disabled people are in control and direct the personal assistant to carry out tasks both inside and outside of the home, including personal care, domestic duties, assisting in day-to-day tasks such as shopping, support in the workplace or socialising;

— personal assistants should not be confused with ‘home help’ and do not in essence look after or care for a disabled person;

— there is currently no standardised procedure in Ireland for administrating personal assistance hours;

— in 2017, 84 per cent of those in receipt of personal assistance service received less than three hours a day and 42 per cent of these people were in receipt of between one and five hours a week, an average of 42 minutes a day, despite disability being a 24-hour affair;

— as far back as 1996, it was identified that an average need of ten hours of personal assistance service per person per week could only respond to essential personal care needs, not quality of life requirements, and it would certainly not enable full active participation in the community;

— 30 years on, the independent living movement in Ireland continues to strive for full independent living on behalf of disabled people advocating for choice and control over their lives and full participation in society as equal citizens; and

— a right to a personal assistance service for disabled people is fundamental to achieving that vision, however, currently there is no right to personal assistance in Ireland;

acknowledges that:

— no specific reference was made for independent living in Budget 2020;

— while extra home help hours is a welcome development, by focusing on home help hours over personal assistance, many disabled people are prevented from living independently in any real meaningful way;

— Sweden has long been regarded as the ground-breaking country and ‘gold standard’ for personal assistance services, and that it remains the only European country which legally confers a right to personal assistance services, and one Ireland must aspire towards in order to achieve a rights-based provision of personal assistance here; and

— legislation to some extent exists in many countries, including Denmark, France, Germany, Latvia, Norway, Serbia, Slovakia, Spain and the United Kingdom;

calls on the Government to:

— consult closely with disabled people and their representative organisations in policy development as enshrined in Article 4.3 of the UNCRPD which states that ‘In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.’;

— engage effectively with the current review of the National Disability Inclusion Strategy 2017-2021, particularly actions No. 69-71 which are nominally about independent living to ‘achieve maximum independence’ for disabled people in Ireland; and

— sign and implement the Optional Protocol of the UNCRPD to commit to expenditure on disability services like personal assistance; and

requests the Dáil to legislate to provide for the establishment of a Commissioner for Independent Living within the Department of Employment Affairs and Social Protection tasked with the following functions:

— to consult with a disabled persons’ organisation as defined by the UNCRPD to devise a universally accepted definition of the personal assistance service in Ireland and address the chronic lack of understanding of the term ‘personal assistance service’ which has led to inconsistencies in standards and quality of service provision across all Health Service Executive (HSE) areas;

— to facilitate the separation of the personal assistance service from home help hours and home care and develop a strategy to oversee the transition of personal assistance service to come under the remit of the Department of Employment Affairs and Social Protection from the Department of Health, recognising personal assistance not as a health issue but as a State service under the purview of the Commissioner for Independent Living;

— to seek an end to the practice of assigning home help hours to disabled people instead of a personal assistance service;

— to ensure individuals do not end up with a service that does not support independent living as per the personal assistance model of service and risk individuals being help hours instead;

— to establish a roadmap towards the provision of ring-fenced funding for personal assistance services to facilitate the continued investment of independent living supports in Ireland;

— to introduce a single standard assessment of need across all HSE Community Healthcare Organisation (CHO) areas, which must include the provision and support for independent assessment of need as per the Disability Act 2005, and the creation of systems that allow for portability of services across CHO areas, meeting the social, personal and employment needs of those who avail of the personal assistance service, with no bureaucratic barriers;

— to ensure that all those who could benefit are made aware of the personal assistance service in order that those who wish to live their lives independently can access the necessary supports to do so;

— to ensure that policy regarding independent living includes a comprehensive assessment of the individual’s needs to determine the amount of personal assistance an individual will receive in order that they live full and active lives in education, employment and society; and

— to ensure that any new legislation or Government policy on independent living conveys the right to access a personal assistance service in this country so that disabled people have choice, control and freedom to participate in society as equals.

I thank the Leas-Cheann Comhairle for facilitating this most important debate on the right to a personal assistance service in Ireland, a right that currently does not exist. I am proposing a motion because, after attempting to introduce legislation to the effect of putting the right to a personal assistance service on a statutory footing, it was ruled out of order under Standing Order 179 due to "significant costs" to the Exchequer. This meant that I could not even initiate the Bill. I then worked with the Independent Living Movement Ireland, ILMI, to draft a motion calling for the Dáil to legislate to provide for the establishment of a commissioner for independent living within the Department of Employment Affairs and Social Protection tasked with various functions, including overseeing the realisation of the right to a personal assistance service over time in a sustainable and cost-effective manner.

The flexibility of this motion is not for the ease of the Government to walk away from its commitments, but for all of us in the House to work together and legislate for the establishment of an office tasked with providing a roadmap for the development of a personal assistance service that is fit for purpose and puts centre stage the right to live independently and as equals in society regardless of disability.

To clarify, the motion is calling for the establishment of a commission for independent living, with limited costs imposed on the Exchequer, tasked with the following functions: to consult a disabled persons' organisation as defined by the UN Convention on the Rights of Persons with Disabilities, UNCRPD, on devising a universally accepted definition of a personal assistance service and addressing the chronic lack of understanding of the term "personal assistance service", which has led to inconsistencies in standards and quality of service provision across all HSE areas; to facilitate the separation of the personal assistance service from home help hours and home care and develop a strategy to oversee the transition of the service to the remit of the Department of Employment Affairs and Social Protection from the Department of Health, recognising personal assistance not as a health issue, but as a public service under the purview of the commissioner for independent living; to seek to end the practice of assigning home help hours to disabled people instead of a personal assistance service; to ensure individuals do not end up with a service that does not support independent living as per the personal assistance model of service and remove the risk of individuals being taken off of waiting lists for personal assistance services when accepting home help hours instead; to establish a roadmap towards the provision of ring-fenced funding for personal assistance services to facilitate the continued investment in independent living supports; and to introduce a single standard assessment of need across all HSE community healthcare organisation, CHO, areas. This function must include the provision and support for independent assessment of need, AON, as per the Disability Act 2005 and the creation of systems that allow for portability of services across CHO areas, meeting the social, personal and employment needs of those who avail of the personal assistance service with no bureaucratic barriers. The commission would also be tasked with ensuring that all those who could benefit were made aware of the personal assistance service in order that those who wished to live their lives independently could access the necessary supports to do so, and that policy regarding independent living included a comprehensive assessment of the individual's needs to determine the amount of personal assistance an individual would receive to live a full and active life in education, employment and society.

It would do us some good to acknowledge that society disables a person, not the disability itself. We must took at disabilities from the perspective of those who have one if we are to address the barriers facing disabled people in society. We must look at ourselves to see what barriers we have created, how these have affected disabled people and how we can dismantle them as architects of this unequal society. Only then can disabled people have more independence, choice and control over their lives and live independently the way we do as able-bodied individuals, which we so often take for granted.

For this reason, I am using the preferred term "disabled people", which I know has confused some people. It is a term developed by disabled people that recognises the social model of disability and acknowledges that the barriers we have put in place have prevented disabled people from living full and active lives as equals in society. The motion was drafted and developed by disabled people, and it is their view that must be at the forefront of all contributions that will be made this evening. I thank all speakers in advance for their contributions.

In March 2018, Ireland formally ratified the UNCRPD. Under Article 19, disabled people have the right to live in the community and have access to a range of in-home and other supports, including personal assistance, to support this. Pioneered by the Centres for Independent Living, the personal assistance service involves the employment of personal assistants by people with physical disabilities to enable them to live as independently as possible. The philosophy of independent living that underpins the personal assistance service is about promoting choice and independence for the person with the disability, known as the leader. With a personal assistance service, disabled people are in control and direct the personal assistant to carry out tasks both inside and outside of the home, including personal care, domestic duties and assisting in day-to-day tasks such as shopping, support in the workplace and socialising.

While a personal assistance service currently exists in Ireland, it is chronically underfunded, inconsistent and incomplete, restricting the lives of many disabled people and their desire for independent living. Disabled people have been witnesses to the incremental destruction of medical services for people with disabilities through years of austerity cuts, the ongoing recruitment and retention crisis in the HSE, not to mention the "non-embargo" embargo, and a gradual shift away from statutory provision of services towards an outsourcing model of service provision. Many thousands of people have access to a personal assistance service, yet many more remain without. It is useful to point out that only 0.3% of disabled people get a service. For those who do, it remains limited and access is restricted due to lack of funding. According to the Disability Federation of Ireland, DFI, there has been no additional funding for personal assistance services since 2008 and people who are on waiting lists must wait for a person to die before they can get new hours. Those hours in turn are often spread across a number of different people, thinly applying the service to recipients.

Between 2010 and 2017, there was a drop of more than 5% in the numbers in receipt of a personal assistance service and home supports combined. According to the HSE, 1.51 million service hours were delivered to 2,470 people in 2017. However, 84.44% of all leaders in receipt of a personal assistance service received less than three hours per day on average, with 44.41% of leaders in receipt of 42 minutes per day on average despite disability being a 24-hour affair. It is clear that anyone who receives an average of 42 minutes per day is not going to be able to live independently, access education or employment or become involved in meaningful social engagement. Disabled people with reduced services of this nature will become trapped in their own homes without the chance to interact and will be prone to isolation and depression.

Currently, only 5% of the HSE's disability budget goes on personal assistance and home support services. Meanwhile, 85% of the budget is spent on residential and day services. This needs to be flipped on its head. It is costing the State more to keep someone in an institution as opposed to proving a personal assistance service so that disabled people can work and engage in society. Research in Sweden shows that the cost of a placement for an individual with extensive functional impairments in a group home often exceeds the cost of personal assistance, not taking into account the personal benefits for a disabled person able to participate in society with greater flexibility and freedom of choice.

There are significant constraints on the current personal assistance service. Delivering services is often oppressive and tied to the medical model approach as opposed to a needs basis. Those in need of personal assistance support often find the application process problematic, as there is no standardised procedure and those in receipt of this support do not have any security regarding the continuation or extent of their service due to a lack of legislative protection. A chronic lack of understanding of the term "personal assistance service" is pervasive in the HSE and has led to inconsistencies in the standards and quality of service provision across all HSE areas.

For instance, the practice of assigning home help hours to disabled people instead of a personal assistance service continues today. Furthermore, individuals are also at risk of being removed from waiting lists for personal assistance services when they accept home help hours instead. Services are only offered during certain hours, on a rigid schedule, or in time slots of less than an hour. These restrictions mean the person only receives enough time to get up, get washed and dressed which is, in essence, a home support service rather than a service that supports and enables independent living.

As far back as 1996, it was recognised that an average of ten hours of personal assistance per person per week could only respond to essential personal care needs, not quality of life requirements and it would certainly not enable full active participation in the community. More than 30 years later, ILMI continues to strive for full independent living on behalf of disabled people, advocating for choice and control over their lives and full participation in society as equal citizens. A right to a personal assistance service for disabled people is fundamental to achieving that vision but currently there is no such right in Ireland. I urge everyone in the House to provide for this rights-based agenda, support the motion and make this a watershed day in the pursuit of rights for and by disabled people in Ireland.

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