Down Syndrome Ireland

Lobbying Organisation Down Syndrome Ireland

Date published 20 May, 2022

Relevant Matter Matters involving public funds

Public Policy Area Health

Period 1 Jan, 2022 to 30 Apr, 2022

Specific Details Down Syndrome Ireland seeks urgent meeting to discuss issues with Progressing Disabilities

Intended results Review and full resourcing of Progressing Disability model so children can access vital therapies such as speech and language, occupational therapy, physiotherapy etc

Name of person primarily responsible for lobbying on this activity Cathy Gray, DSI Head of Communications and Public Affairs

Did any Designated Public Official(DPO) or former Designated Public Official(DPO) carry out lobbying activities on your behalf in relation to this return? You must include yourself, and answer Yes, if you are a current DPO or a DPO at any time in the past. (What is a Designated Public Official?) No

Did you manage or direct a grassroots campaign? No

Was this lobbying done on behalf of a client? No

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Email (2-5)

DSI presented a report with findings from a recent survey of our members, 65% of respondents received zero Speech and Language therapy sessions last year. There is nowhere in the country where children are getting ready access to all of the therapies they need to support them to reach their potential. Almost half of children aged 0-18 had no therapy of any kind in the last year. While the situation varies between one CHO area and another, there is nowhere where the system is functioning well for children with Down syndrome and their families. This survey took place in the context of many services moving to the ‘Progressing Disabilities’ model, which is intended to streamline pathways and improve access to services, however, there is little public confidence that the intended outcome will be achieved. DSI seeking meeting a matter of urgency to discuss the very serious concerns parents of children with Down syndrome who have received little to no State services.

Designated public officials lobbied

The following DPOs were lobbied during this return period on this specific Subject Matter Area. These DPOs were involved in at least one of the Lobbying Activities listed above, but not necessarily all of them. As returns are specific to a Subject Matter Area the above Lobbying Activities may be associated with multiple returns.

Anne Rabbitte Minister of State (Department of Children, Equality, Disability, Integration and Youth)

Stephen Donnelly Minister (Department of Health)

Leo Varadkar An Tánaiste (Dáil Éireann, the Oireachtas)

Simon Coveney Minister (Department of Foreign Affairs)

Holly Cairns TD (Dáil Éireann, the Oireachtas)

Duncan Smith TD (Dáil Éireann, the Oireachtas)

Pauline Tully TD (Dáil Éireann, the Oireachtas)

Alan Kelly TD (Dáil Éireann, the Oireachtas)

Micheál Martin An Taoiseach (Department of the Taoiseach)