We would like to thank Minister for Children, Equality, Disability, Integration and Youth Roderic O’Gorman and Minister of State Anne Rabbitte for a very positive and productive meeting this week to discuss issues facing children and adults with Down syndrome.
We outlined the very serious concerns parents have for their children with Down syndrome who are due to start school in September 2021 and discussed measures that need to be put in place to ensure a successful transition to school and continued support within the school setting.
We welcomed the announcement from Minister Rabbitte of 100 additional speech and language posts to disability services next year. This which will certainly help to free up therapists to devote more time to providing the much-needed interventions for children.
We outlined, however, that the rollout of Progressing Disabilities is having an impact on parents of children with Down syndrome. While we welcomed the additional posts, we outlined that more therapists are required to ensure that children can access multiple therapies/supports from their multidisciplinary teams. We asked that parents are supported during this process with frequent information sessions/timely responses to correspondence and that local issues (data transferal, access to therapists) can be resolved in a timely manner.
We want to ensure every child with Down syndrome in Ireland has access to the See and Learn programme at preschool. As you may be aware, we rolled out the programme on a pilot basis in 2019 thanks to funds raised by the HB Fundays campaign. We evaluated the impact of the programme to lobby the Government to include it in the AIM supports.
The health needs of people with Down syndrome was also a key aspect of our discussions.
Along with Down syndrome come many specific health implications and these are best dealt with by clinical specialists who have an overview of the multiple health needs of children and adults with Down syndrome.
The current crisis in our health system is impacting them more than most. Every delayed referral, long waiting list and unmet health need impacts on other aspects of development.
There are 7,000 children and adults with Down syndrome in Ireland. In Ireland, there is only one dedicated nurse, focused on 0 – 18s only, who specialises in Down syndrome. The post, which is supported by Down Syndrome Ireland, is based in CHO7 at Trinity College Dublin, Department of Paediatrics, National Children’s Hospital Tallaght. We are campaigning for 8 additional clinical nurse specialists in each of the nine CHO areas in Ireland.
Other pressing issues, such as the waiting times the screening for Down Syndrome Associated Arthritis were also highlighted.
We were encouraged by the meeting and the commitment from both Ministers for further collaboration on the issues facing our members.