Down Syndrome Ireland met with the Minister for Disabilities Finian McGrath TD last week to discuss areas that need to be addressed across the lifespan for people with Down syndrome.
Issued discussed were wide-ranging; covering the legal rights of people with disabilities, access to early intervention supports and therapies, long healthcare waiting lists, the need for a rights based approach to education and decision making, access to respite care and services for people who are aging and access to personalised budgets.
We welcomed the opportunity to meet Minister McGrath – who is a member himself of Down Syndrome Ireland – to outline issues that you, our members, have raised with us.
We welcomed the appointment of Minister McGrath as Minister For Disabilities and recognise understand and appreciate the achievements of the Minister, including the opening of a number of respite centres and the allocation of significant budgets in disability related services.
However, the fact remains that our members on the ground are reporting huge difficulty in accessing services from the HSE particularly in health and disability services, which is causing undue family hardship and stress. For instance, 60% of our members are waiting for respite care and more than half are waiting for speech and language therapy, occupational therapy, and outpatient appointments for 6 months or longer, with some waiting for two to three years.
We want our members to have a legal right to an Individual education plan (IEP). The UN Convention outlines the right to an inclusive education, but the details that make this a reality (such as IEPs) are not currently a legal obligation for schools. We also want fast tracking of the Decision Support Service to enable people to be supported to make big decisions such as marriage, purchasing a home and signing documents.
We were particularly disappointed that the HSE have decided to run all pilot projects on Personalised Budgets. This is a major step backwards in our drive to facilitate independent living journey for those that want it.