DEBRA Ireland

Politician(s) lobbied: Anne O'Connor (Chief Executive Officer), Health Service Executive

Intent: To get care package approved and delivered so patient could leave hospital and receive care at home with community supports

Methods: Email

Politician(s) lobbied: Paul McAuliffe (TD), Dáil Éireann, the Oireachtas

Intent: To get care package signed off and delivered and get individual out of hospital

Methods: Email

Politician(s) lobbied: Anne O'Connor (Chief Executive Officer), Health Service Executive

Intent: A meeting with CEO to ensure:A clear transparent timeline and pathway for the allocation of the €700,000 funding for EB. Every family who have a care package has access to a care coordinator. A unified and flexible funding model that removes barriers between disability and nursing budgets and enables rapid response to changing care needs with flexible multiagency service delivery. Investment in training and workforce and enhanced rates for complex care. PHN Involvement in community care

Methods: Email

Politician(s) lobbied: Paul McAuliffe (TD), Dáil Éireann, the Oireachtas; George Lawlor (TD), Dáil Éireann, the Oireachtas; Marie Sherlock (Senator), Seanad; Darragh O'Brien (Minister), Department of Climate, Energy and the Environment

Intent: To secure a meeting with the Minister for Transport, Darragh O'Brien to discuss the gaps in the current disability parking scheme criteria::To amend the current criteria to ensure consistency so that those living with EB who need a parking badge, can access one.

Methods: Email

Politician(s) lobbied: Chris Andrews (TD), Dáil Éireann, the Oireachtas; Anne Rabbitte (TD), Dáil Éireann, the Oireachtas; Shane Curley (Senator), Seanad; Mark Duffy (Senator), Seanad; Imelda Goldsboro (Senator), Seanad; Laura Harmon (Senator), Seanad; Laura Harmon (Senator), Seanad; Joe Conway (Senator), Seanad; Nessa Cosgrove (Senator), Seanad; Teresa Costello (Senator), Seanad; Teresa Costello (Senator), Seanad; Paraic Brady (Senator), Seanad; Cathal Byrne (Senator), Seanad; Joanne Collins (Senator), Seanad; Joanne Collins (Senator), Seanad; James Browne (Minister), Department of Housing, Local Government and Heritage; Johnny Mythen (TD), Dáil Éireann, the Oireachtas; George Lawlor (TD), Dáil Éireann, the Oireachtas; Verona Murphy (TD), Dáil Éireann, the Oireachtas; Mary Butler (TD), Dáil Éireann, the Oireachtas; Marian Harkin (Minister of State), Department of Further and Higher Education, Research, Innovation and Science; Erin McGreehan (TD), Dáil Éireann, the Oireachtas; Seán Fleming (TD), Dáil Éireann, the Oireachtas; Jennifer Carroll MacNeill (Minister), Department of Health; Paul Donnelly (TD), Dáil Éireann, the Oireachtas; Paul McAuliffe (TD), Dáil Éireann, the Oireachtas; Jack Chambers (Minister), Department of Public Expenditure, NDP Delivery and Reform; Colm Brophy (Minister of State), Department of Justice; Paul Murphy (TD), Dáil Éireann, the Oireachtas; Ciarán Ahern (TD), Dáil Éireann, the Oireachtas; Catherine Ardagh (TD), Dáil Éireann, the Oireachtas; Emer Higgins (Minister of State), Department of Children, Equality, Disability, Integration and Youth; Louise O'Reilly (TD), Dáil Éireann, the Oireachtas; Grace Boland (TD), Dáil Éireann, the Oireachtas; Ann Graves (TD), Dáil Éireann, the Oireachtas; John Paul O'Shea (TD), Dáil Éireann, the Oireachtas; Darragh O'Brien (Minister), Department of Climate, Energy and the Environment; Cian O'Callaghan (TD), Dáil Éireann, the Oireachtas; Holly Cairns (TD), Dáil Éireann, the Oireachtas; Aindrias Moynihan (TD), Dáil Éireann, the Oireachtas; Thomas Gould (TD), Dáil Éireann, the Oireachtas; Eoghan Kenny (TD), Dáil Éireann, the Oireachtas; Timmy Dooley (Minister of State), Department of Climate, Energy and the Environment; Niamh Smyth (Minister of State), Department of Enterprise, Trade and Employment; Laura Harmon (Senator), Seanad; Peter 'Chap' Cleere (TD), Dáil Éireann, the Oireachtas; George Lawlor (TD), Dáil Éireann, the Oireachtas; Michael Healy-Rae (Minister of State), Department of Agriculture, Food and the Marine

Intent: To secure the agreed €700,000 for EB supports and services that the previous government committed to in 2024. Highlight systemic gaps in EB care and support• Identify key advocacy messages• Maintain pressure on government for policy change and enhanced services• Raise public and political awareness• Foster collaboration across stakeholders

Methods: Event / ReceptionSocial MediaPhone callEmail

Politician(s) lobbied: Kate Killeen White (Regional Executive Officer), Health Service Executive; Bernard Gloster (Chief Executive Officer), Health Service Executive

Intent: To secure the €125,000 funding for Debra family support services

Methods: Email

Politician(s) lobbied: Bernard Gloster (Chief Executive Officer), Health Service Executive

Intent: To secure funding for Debra Family Support Services

Methods: Email

Politician(s) lobbied: Jennifer Carroll MacNeill (Minister), Department of Health

Intent: For Ireland to host a rare diseases conference

Methods: Email

Politician(s) lobbied: Pádraig Rice (TD), Dáil Éireann, the Oireachtas

Intent: To ensure that the Committee focuses on the areas outlined and to secure participation in a committee hearing.

Methods: Email

Politician(s) lobbied: Unknown

Intent: Unknown

Methods: Unknown