Personalised budgets will give people with disabilities, including people with Down syndrome, access to their own HSE disability funding. As you may be aware, Down Syndrome Ireland has been activity campaigning for some time for supports for adults with Down syndrome to be person centred, and for personalised budgets to be made available to those people who want to manage their own supports.
In July, Down Syndrome Ireland welcomed the launch of the Personalised Budgets Taskforce Report on Disability Services, which recommended that the Government establish a number of Pilot Projects to test the delivery of the programme. Earlier this year, representatives from DSI were delighted to meet with Government representatives in Leinster House to call for the inclusion of our Kerry Branch as one of the Government’s Personalised Budgets pilot projects.
HSE to run ALL Personalised Budget pilots
It is outrageous following years of consultations and costly reports, we were informed at a meeting last week that all of the pilot projects will be run by the HSE. The pilot projects will – we were informed – only be an option for existing HSE Disability Services users or for school-leavers who sign up for HSE Disability Services.
As we have said for years, Personalised Budgets need to be piloted outside of the existing HSE service models. The programme needs to give people the resources they need to lead the life they choose. Having all pilots run by the HSE is wholly unacceptable as it is likely to restrict the options available to people with disabilities. This flies in the face of the recently ratified United Nations Convention of the Rights of People with Disabilities (UNCRPD), which highlights the rights of people with disabilities to be full and active participants in society.
We are due to meet officials from the HSE next week to outline our concerns and to call on the Government to stop simply paying lip service and to implement real change.