We were very pleased to formally meet Finian McGrath TD, Minister of State with Responsibility for Disability Issues this week to highlight the issues of our members and the priorities for Down Syndrome Ireland.
The areas that our CEO Gary Owens highlighted to Minister McGrath were:
1. Personalised Budgets for adults with disabilities to give people with disabilities access to their own funding. Under the current ‘one size fits all’ model, funding is allocated to several large disability service providers for people with disabilities in residential and daycare settings. The person has little or no say in how the money is used. As a result, many people are left languishing in unsuitable services and settings that are not catered towards their needs.
2.We want the Government to introduce meaningful reforms to make it financially viable for a person with a disability to take up employment.
We are calling on the Government to decouple the disability allowance from unemployment assistance and benefits. In an environment where we are reaching full employment there is a real opportunity for the Government to enable people with disabilities, including those with Down syndrome, to contribute to the economy and access employment without the fear of losing their benefits. We are asking for three year protection of the benefit.
“Minister McGrath also highlighted his own areas of importance that he will continue to focus on. These are person centred living, community living, respite care for people with Down syndrome as well as employment and employment availability for persons with disabilities. He is also dedicated to providing Personalised Budgets for adults with disabilities as well as the ratification of the United Nations Convention on the Rights of Persons with Disabilities.”
3.We asked the Minister to help employers employ people with disabilities. There is additional costs and support required and the financial incentives provided need to recognise that.
4.Funding for additional nurse specialists in Down syndrome across the lifespan
Down syndrome affects all the cells in the body. Along with Down syndrome come many specific health implications and these are best dealt with clinical specialists who have an overview of the multiple health needs of children and adults with Down syndrome.
At the moment, there is one clinical nurse specialist post based at Trinity College Dublin, Department of Paediatrics in the National Children’s Hospital, Tallaght. The Clinical Nurse is Fiona McGrane and the post is supported and managed by Down Syndrome Ireland. Demand for the service is huge and continues to grow everyday. For this reason, we are calling for additional resources to fund clinical nurse specialist-led clinics across Ireland for both children and adults with Down syndrome
5. Access to Speech and Language Therapy in education settings
At Down Syndrome Ireland, we have long campaigned for Speech and Language Therapy to be provided within schools, to be fully integrated into the child’s education.
Minister McGrath also highlighted his own areas of importance that he will continue to focus on. These are person centred living, community living, respite care for people with Down syndrome as well as employment and employment availability for persons with disabilities. He is also dedicated to providing Personalised Budgets for adults with disabilities as well as the ratification of the United Nations Convention on the Rights of Persons with Disabilities.
We are grateful to Minister McGrath for meeting with us and we look forward to further interactions with him on areas of focus and importance for our organisation and most importantly for you, our members.