Personalised budgets for adults with Down syndrome

In This Section

Allowing persons with disabilities to make personal choices and exercise independent judgment on how their HSE disability funding is used can have life-enhancing, confidence-building results for adults with Down syndrome.

Personalised budgets will give people with disabilities, including people with Down syndrome, access to their own HSE disability funding.

The Government this week launched the Personalised Budgets Taskforce Report on Disability Services. The report sets out how personalised budgets could work as a funding mechanism for people with a disability, providing them with greater choice and control over the services and supports they receive.  

Down Syndrome Ireland were actively involved in the Taskforce since it was established in September 2016. Our President Mary Doherty and two of our adult members were members the Advisory and Consultative Group.

We welcome the launch of the Personalised Budgets Taskforce Report on Disability Services as we have been 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. Down Syndrome Ireland have an established adult education programme and an evolving employment programme, and are ready to engage with the pilot projects.

The Task Force, having reviewed the national and international research evidence and consulted with service users and their families, recommended that the Department of Health and the HSE should establish demonstration projects to test the delivery of personalised budgets with a view to identifying the best approach to the wider roll-out of these payment models following the initial demonstration phase.  Funding of €1.3 million has been secured from the Department of Health budget for the set up and administration costs of demonstration projects.

According to the Government, the demonstration projects are expected to begin roll out in late 2018 and will take two years to complete and evaluate. The initial demonstration projects will test a range of issues such as different payment options, the costs of operating a personalised budget for the individual, quality assurance, employment issues, and financial sustainability of personalised budgets in the Irish context.

We trust that the demonstration projects will begin in a timely manner, and that people on these projects can use the system to access Down Syndrome Ireland programmes if they choose, rather than being limited to programmes provided by HSE disability service providers.

It would be a great shame if the decision to start with demonstration projects results in a long delay for the many people who would like to take control of their budgets. We urge all people involved to ensure that this does not happen.

We are delighted to see that the demonstration projects will reflect ‘the challenges relating to rural areas and community inclusion’ and that in addition to gathering data on ‘information on the operational costs of a personalised budget’, data will also be gathered on user experience, improved quality of life outcomes and greater flexibility. 

We are closely monitoring this space, and trust that in time the availability of personalised budgets will not be limited by age, and will be used to respond creatively to the needs of children and adults outside of the current HSE model.

The ratification of the UNCRPD requires us all to ensure that people with disabilities who require additional supports are facilitated to participate as fully as possible in mainstream society, and this is a step in the right direction.