Ms Patsy Carr:

I thank the joint committee for its invitation to discuss personal assistant services for individuals with a disability. I am aware of its continuing interest in the issue and happy to provide whatever information I can and follow up with responses to questions in due course. I will provide an outline of the background to personal assistant services and the policy context in which they operate. I will also provide some detail on the nature and level of services being provided.

The term "personal assistance user" refers to a person with a disability choosing a personal assistant of their choice to aid him or her in everyday tasks and negotiating environmental, transport and other social barriers. However, all people with a disability do not want or require personal assistance but all people with a disability, including those who use or wish to use personal assistants, want to exercise choice, control and self-determination over their own lives. Government policy is to integrate services for people with disabilities with mainstream services, where possible. While the resources for the provision of assisted living services available are substantial, they are finite. The independent living philosophy underpinning the personal assistant service concurs with the approach that people with a disability should be empowered to live independently. The philosophy of independent living espouses living like everyone else, having the right to self-determination, to exert control over one’s life, to have opportunities to make decisions and take responsibility and to pursue activities of one’s own choosing, regardless of disability.

The role of a personal assistant is to assist a person with a disability to maximise his or her independence through supporting him or her to live in integrated settings and access community facilities. The personal assistant works on a one to one basis in the home and/or in the community with a person with a physical or sensory disability. A vital element of this personalised support is the full involvement of the individual service user in planning and agreeing the type of support and the times it is provided for him or her. Supporting independent living must enhance the person’s control over his or her own life.

Article 19 of the UN Convention on the Rights of Persons with Disabilities states people with disabilities should live where they wish and with whom they wish; that they should enjoy a range of community support services, including personal assistance; that they should enjoy community life and its opportunities on an equal basis to non-disabled people and that they should not be subject to isolation or segregation. The Department of Health and the HSE acknowledge the role of personal assistant services in supporting a person with a disability to realise the entitlements set out in Article 19.

Personal assistant services are accessed through an application process or referrals from public health nurses or other community-based staff. Individuals' needs are evaluated against the criteria for prioritisation for the particular services and decisions are then made on the allocation of resources. Resource allocation is determined by the needs of the individual, compliance with the prioritisation criteria and the level of resources available. While the resources available for the provision of personal assistant services are substantial, they are finite. Services are provided for those most in need in the context of the available resources and with consideration given to the other support services provided for the individual. In the normal course of service delivery there will be ongoing reviews throughout the year to ensure that, if needs change, the service provided will address this change within the available resources. An individual’s personal assistant hours may be adjusted following a service review where service demand can result in one individual’s service being reduced to address the priority needs of others with disabilities within the community.

Personal assistant services are, in the main, provided through a range of voluntary service providers. Some 80% of specialised disability services are delivered through non-statutory sector service providers.

In the 2016 census 643,131 people self-declared that they had a disability. Approximately 10% access specialist disability services consistent with their needs.

Therefore, many do not require specialist disability services. The Department of Health and the HSE are committed to protecting the level of personal assistant, PA, services available to persons with disabilities. Year on year from 2013, the HSE has consistently increased the number of hours available to people with disabilities. In 2013, 1.29 million PA service hours were delivered to 2,057 people. In 2015, 1.48 million service hours were delivered to 2,369 people. In 2017, 1.51 million service hours were delivered to 2,470 people. This represents an additional 100,000 hours in excess of the targeted number for that year.

The level of service delivered is varied to ensure that each client’s needs are reflected; therefore there is no average agreed number of PA hours per person. While many individuals are adequately provided for by their current level of support, it is recognised that many would benefit from more support hours. The number of PA service hours delivered in 2017, broken down by number of hours per week per individual is as follows: 1,097 people received one to five hours per week, while six to ten hours, 11 to 20 hours, 21 to 40 hours, 41 to 60 hours and 60 hours or more were delivered to 570 people, 419 people, 241 people, 67 people and 65 people, respectively. The need for increased services is acknowledged by the Department of Health and the HSE. The HSE continues to work with agencies to explore various ways of responding to identified need in line with the available budget.

Transforming Lives is the programme of reform under way to realise the overarching vision for disability services, namely, "to contribute to the realisation of a society where people with disabilities are supported, as far as possible, to participate to their full potential in economic and social life, and have access to a range of quality personal social support and services to enhance their quality of life and well-being." The national steering committee of Transforming Lives has agreed an outcomes framework following consultation with people with disabilities. This framework will help the HSE in identifying what outcomes are being achieved by individual services and what further actions are needed across the disability services as a whole.

The role of PA services, as outlined, is an important element in meeting the objectives of a number of key policy directions such as the approach outlined in the congregated settings report and the new directions report. As noted in the research, it is essential that there is co-ordination between Departments and Government agencies to provide a holistic approach across society to ensure full inclusion and self-determination for people with disabilities. However, all publicly funded services must adhere to employment legislation and appropriate health and safety training must be in place to protect both the service user and the employee. Garda clearance is also essential in ensuring the safeguarding of individuals. Given the move away from congregated settings towards a community-based and inclusive model of service provision, it is believed that the demand for PA and support services will increase significantly over time. The Department of Health and the HSE are committed to further developing the model in order that there is a consistency of approach and to ensure that the principle of self-direction is universally understood and applied. The HSE disability services team at a national level will lead a process to achieve this in consultation with service users and service providers.

I hope that this information is of assistance to the members of the committee. Myself and Ms Marion Meany, my colleague from the HSE, will be happy to answer any further questions.