Huntington's Disease Association of Ireland

Lobbying Organisation Huntington's Disease Association of Ireland

Date published 16 Jan, 2020

Relevant Matter Matters involving public funds

Public Policy Area Health

Period 1 Sep, 2019 to 31 Dec, 2019

Specific Details Supporting the #SaveCuisle campaign. Cuisle, a National Holiday and Respite Centre used by people with complex disabilities (including Huntington's Disease) closed in November 2019 due to lack of funds for maintenance work.

Intended results Awareness of the need to maintain specialist respite and holiday services (at Cuisle) for people with complex disability, including those living with Huntington’s Disease, who cannot avail of hotel respite breaks. Throughout Ireland people living with complex conditions and their families are unhappy with the very limited respite options available to them. A respite break in a nursing home is inappropriate for younger people because of the age demography in such homes and the lack of activities.

Name of person primarily responsible for lobbying on this activity Patricia Towey

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? Yes

What is the directive you gave to the grassroots campaigners? Asking constituents to support the #SaveCuisle campaign by contacting their local public representatives to ask for their support to save Cuisle, a National Holiday and Respite Centre for people with complex disabilities.

Was this lobbying done on behalf of a client? No

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Email (11-20)

Emails to An Taoiseach Leo Varadkar, Minister for Health Simon Harris, Ministers of State (Dept. Health) Jim Daly and Finian McGrath and members of the Oireachtas Committee for Health outlining the essential need for the Cuisle National Holiday and Respite Centre to remain available to people with complex disabilities (including Huntington’s Disease) who avail of holiday and respite breaks there and asking for their support on same.

Social Media (11-20)

Tweets, retweets regarding #SaveCuisle to @SenatorJDolan @FinianMcGrathTD @SimonHarrisTD @JimDalyTD @LeoVaradkar @simoncoveney @jerrybuttimer

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.

Leo Varadkar Taoiseach (Department of the Taoiseach)

Simon Harris Minister (Department of Health)

Jim Daly Minister of State (Department of Health)

Finian McGrath Minister of State (Department of Health)

John Dolan Senator (Seanad)

Michael Harty TD (Dáil Éireann, the Oireachtas)

Stephen Donnelly TD (Dáil Éireann, the Oireachtas)

Louise O'Reilly TD (Dáil Éireann, the Oireachtas)

Kate O'Connell TD (Dáil Éireann, the Oireachtas)

Colm Burke Senator (Seanad)

Alan Kelly TD (Dáil Éireann, the Oireachtas)

Rónán Mullen Senator (Seanad)

Jerry Buttimer Senator (Seanad)

Simon Coveney Tánaiste and Minister (Department of Foreign Affairs)