Dr. Emer Begley:

I thank the Cathaoirleach and members of the committee for the invitation to appear today. I am joined by Mr. Michael Doyle, director of assisted living services with one of our member organisations, the Irish Wheelchair Association, and also by Mr. Brian Dalton, who is on the board of ChildVision and the Irish National Braille and Alternative Formats Authority. Both are members of DFI. Our opening statement was developed from a policy position DFI published last year with our personal assistance advisory group and with input from Mr. Doyle and Mr. Dalton. DFI is a civil society and pan-disability federation of over 100 members working at national, regional and local levels. Our aim is to support implementation of the United Nations Convention on the Rights of People with Disabilities, UNCRPD. I will speak to two foundational elements of independent living in the community this morning, namely, personal assistance services and personalised budgets.

Article 19 of the UN Convention states the right of disabled people to access “... community support services, including personal assistance, PA, necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community”. Importantly, the article outlines the rights of disabled people to access education and employment as well as to actively participate in their communities however they choose on an equal basis with others. Historically, PA services have evolved without a stated Government policy position in Ireland and without an acknowledged statutory, inalienable right to independent living as enshrined in the convention. In part, this has contributed to limited expansion of PA services and exacerbated inequity of access, leading also to conflation of PA services with other disability supports such as home care services. However, they are fundamentally different.

Disabled people, often referred to as leaders within a PA service, choose and direct their PA. PAs provide person-to-person assistance for a range of daily activities both inside and outside the home. This remains at the discretion and direction of the disabled person. Administrative functions for a PA service can be undertaken by a PA but also by a service provider, such as the Irish Wheelchair Association or one of the many centres for independent living and other voluntary organisations that work across the country. It is fundamental that the ethos and values of the PA service model are upheld in future policies and practices. There are significant commitments in the recently published national human rights strategy for disabled people to deliver 1 million additional PA hours by 2030. To achieve this target, several actions are required, including making the work of the HSE’s PA review group a priority as it is tasked to develop an agreed definition and model for PA, providing recommendations for legislative and policy changes and a roadmap for the improvement and enhancement on an equitable national basis. It needs workforce planning to address recruitment and retention of skilled PAs with pay alignment assured and legislation for the right to a personal assistant.

To turn to personalised budgets, sometimes called personal budgets or individualised budgets, this refers to specific funding allocated following an assessment of need which the individual can then use to arrange and pay for the supports and services that best meet their individual goals and preferences. Personalised budgets can provide greater choice, control, flexibility and autonomy to the individual to self-direct their support and care. It enables people to live independently, participate in the community and exercise their rights under the convention. Personalised budgets are frequently considered alongside PA services, however the two are not necessarily linked. In a holistic model, there is potential for personal budgets to fund other activities and interventions such as transport, training, therapies, sport, mileage for PAs and access to other community supports, for instance. There has been limited implementation of personalised budgets in Ireland to date. A pilot initiative developed and run by the HSE is currently under review by the National Disability Authority. Its report is expected in quarter 1 next year. It is our view that the model which exists in Ireland has limitations. There is a considerable administrative and human resource burden for the individual if they are managing their own budget, co-ordinating their support and financially managing invoices and payments as well as being an employer and all that entails. In addition, inconsistencies have been identified with personal budgets across regions. They lacked flexibility and standardisation of approach. We know that expanded delivery, increased flexibility and choice are key components which can maximise the impact of personalised budgets. There are multiple examples of workable models from other areas that can inform further development. It is our view that personalised budgets need real commitment with an agreed model and delivery for them to maximise impact. We are happy to expand on any of these points and to answer any questions.