Intent: In Budget 2025, it is essential that the Government commits to fully resourcing and implementing the Action Plan for Disability Services 2024-2026.
Details: Pre-Budget Communication to the Seanad, Ministers and TD's highlighting the issues facing people with intellectual disabilities and their families, and the critical sustainability issues that are facing the organisations providing supports for these individuals - this includes St Michael's House.
Intent: IASW asked for robust adult safeguarding legislation after the Brandon case. The Government failed to act. We asked for legislation after the Emily case. The government failed to act. We are asking for the Government to act now, in the wake of the Grace case
Details: IASW Response to the Farrelly Commission Report
Intent: Request for enough time to be allocated to the Report Stage to allow for proper scrutiny of the new amendments given the scale and complexity of the Bill and that the Bill undergo an independent assessment against Aarhus Convention requirements
Intent: To raise awareness of Oireachtas members on the urgent need for extra time for students with dyslexia and other learning difficulties when sitting State Exams (Junior Cycle and Leaving Certificate) as part of the accommodations offered within the RACE (Reasonable Accommodations at the Certificate Examinations) scheme as administered by the State Examinations Commission (SEC).
Details: Dyslexia Awareness Month Presentation for Oireachtas Members on The Need for Extra Time in State Exams
Invitations to Oireachas members before the event, and distribution of PDF of briefing to Oireachtas members (after the event). - EmailMeeting for Oireachtas members on October 8th 2024 at Buswells Hotel, as part of Dyslexia Awareness Month. - Meeting
Intent: T.D.'s and Senators to have a copy of the NTMABS research report 'Financial Unwellness' and to have it's findings considered as part of the Financial Literacy Strategy currently being prepared.
Details: An copy of NTMABS research report into financial literacy in the Traveller community was sent via email to all T.D.'s and Senators
Intent: Inclusion of rare disease priorities in political party manifestos.::Inclusion of rare disease priorities in programme for government following next general election.
Intent: Increased knowledge and understanding of unmet needs of people living with rare diseases.::PQs to Minister to seek commitment to deliver expanded newborn bloodspot screening program.::Expansion of newborn bloodspot screening panel to bring us inline (at minimum) with average numbers across Europe.
Details: Get Rare Aware - Engaging with elected officials on Get Rare Aware campaign
Jun 25 meeting with TDs & Senators in AV Room to discuss importance of newborn bloodspot screening and the need to expand the system in Ireland. - MeetingOnline meetings (2x in May, 2x in June) detailing need for expanded newborn bloodspot screening panel in Ireland. - Virtual Meeting
Intent: Expansion of the programme to increase the number of conditions screened for, to be in line with the European average of 18 conditions. In 2022, the condition, ADIA-SCID was added to the NBS programme, however this hasn’t been fully implemented yet. In November 2023, Spinal Muscular Atrophy (SMA) was endorsed to be included in the NBS programme with a commitment that screening for SMA would start before the end of 2024.
Details: This campaign is to place urgency on government to increase the number of conditions screened for, to be in line with the European average of 18 conditions. They are currently 34 conditions waiting to be assessed for inclusion by the National Screening Advisory Committee.
This campaign is led by Rare Diseases Ireland. MDI are one of the supporters of the campaign along with other patient organisations for rare diseases. A meeting at the Oireachtas was held on 25 June, chaired by John Lahart (TD). Rare disease patients, families and advocates were welcomed to the Dáil to discuss the need to expand Ireland’s newborn screening ‘heel prick test’. - Meeting
Intent: Raising awareness and support for the delivery of commitments to neurological care outlined in Budget 2022 and Budget 2023Raising awareness and support for future further investment in neurological care services, including in Budget 2025::Increased awareness of the needs of people with neurological conditions for neurology and neurorehabilitation services, particularly at regional level::Increased awareness and support for the financial and other challenges facing voluntary sector providers of neurological care services
Details: Implementation of Existing Policy in relation to Neurology and Neurorehabilitation Services
Briefing Health Committee members ahead of NAI presentation to Health Committee 15th May 2024 - Phone callCirculation of Neurological Alliance of Ireland pre Budget Submission 2025 outlining calls for investment in community neurorehabilitation teams and regional neurology services - EmailEngagement with Health Committee members to provide them with information and updates ahead of a meeting of the Committee to discuss issues relating to the delivery of neurology and neurorehabilitation services on July 3rd 2024 - Phone call
The Alzheimer Society of Ireland National Tea Day is in May each year, this event in the Leinster House brought people living with dementia and dementia carers to meet Oireachtas Members to mark Tea Day 2024 - Event / ReceptionPhone call
