Advocating for people living with neuromuscular conditions and their families:MDI and our umbrella organisations – Budget 2025 asks and general election manifestos.
Muscular Dystrophy Ireland (MDI) is proud to be a member of several umbrella organisations that work tirelessly to advocate for the recognition, rights and improved quality of life for people living with neuromuscular conditions and their families. These organisations amplify our voice and drive crucial changes at national and local level.
You can find up-to-date information about how the Budget will affect you here, summarised by Citizens Information.
We also provide an overview below of key issues identified by MDI as important for our community and a flavour of how some of these umbrella organisations are championing these causes in their pre-budget 2025 submissions and election manifestos. We are members of Care Alliance Ireland, Disability Federation of Ireland, Health Research Charities Ireland (HRCI),The Irish Platform for Patient Organisations, Science & Industry (IPPOSI), Neurological Alliance of Ireland (NAI), Rare Diseases Ireland (RDI) and The Wheel. You can read their specific submissions/manifestos by clicking on each of the organisations’ names above.
Inadequacy of the Basic Social Welfare Rate
The Department of Social Protection published the Cost of Disability Report in Ireland (2021) which detailed the additional costs that would impact the cost of living with a disability, the report estimated that the total annual additional cost of disability for people with difficulty doing basic activities like walking, stairs, reaching, lifting, or carrying, herein referred to as physical disability is between €10,756 - €13,311. A set of measures was voted to alleviate the cost-of-living crisis faced by many in Ireland in the 2023 budget. While these measures were welcomed, especially the increase of the disability allowance they only addressed partially the economic struggle faced by many people with disabilities. The current rate for the Disability Allowance is €220. This amount, while increased in successive budgets, is still substantially lower than the poverty threshold which was €291.50 per week in 2021. It is important to highlight that in some cases, this allowance (€11,440 per annum) would not even cover the additional disability related costs that someone faces, let alone all the other everyday living costs.
MDI recommendation
Establishment and enactment of a Government Action Plan to fully address Cost of Disability over the next three years.
Disability Federation of Ireland (DFI) pre-budget asks
Sustainable health and social care services: Provide funding to deliver the Action Plan for Disability Services 2024-2026.
Tackling poverty, cost of disability and employment: Introduce a recurring Cost of Disability payment of €2,600 a year, or €50 a week in addition to raising social welfare rates.
Realising housing for all: Provide funding to implement the National Housing Strategy for Disabled People 2022-2027.
Newborn screening
Effective newborn screening can be enormously beneficial when it comes to timely diagnosis and access to potentially lifesaving and curative treatments for neuromuscular conditions. However, Ireland is significantly behind its European peers in newborn screening:
MDI recommendations
Ensure transparency on assessment timeframes for newborns.
Increase resources to ensure the assessment process can be conducted thoroughly and swiftly with immediate implementation on approval.
Rare Disease Ireland (RDI) asks
Earlier, Faster and more Accurate Diagnosis
Sustainably invest in continuous expansion of the newborn screening ‘heel prick’ test program at HSE and the National Screening Advisory Committee. At minimum double (from 9 to the European average of 18) the number of rare diseases screened at birth.
Timely Access to Innovative Treatments and Tools
Develop ethical framework to inform adoption and/or expansion of innovations such as AI-driven diagnostics and genomic newborn screening.
Equitable access to new medicines
Patients want timely access to potentially life-changing, or life-saving new medicines. Innovative medical treatments for some neuromuscular conditions are coming to the market, but many Irish patients are waiting longer than their European counterparts.
MDI recommendations
Develop a cross-departmental national ten-year plan to ensure timely, equal, and sustainable access to medicines and innovation.
Review plans to establish a National Medicines Agency to identify a long-term approach to managing the prescribing and reimbursement of new medicines.
Build upon previous commitments made to reimburse new medicines and allocate additional funding to ensure equitable access for Irish patients.
Reform the national assessment and reimbursement process to meet the demand for new medicines in years to come and allocate resources to allow new treatments to come into the Irish market.
Rare Disease Ireland (RDI) asks
Timely Access to Innovative Treatments and Tools
Establish multi-stakeholder ‘National ATMP Clinical Network Programme’ to accelerate development of infrastructure and personnel to provide access to cell and gene therapies in Irish expert centres.
Appoint a cross-sectoral group to develop and implement a strategy that ensures innovative medicines are available to people living with rare diseases within one year of receiving European Medicines Agency (EMA) marketing authorisation, with appropriate safe delivery and outcome evaluation, including outcome registries.
Social Housing
In Ireland, there is no single body responsible for the provision of disabled housing. Rather, responsibility is spread across different departments, agencies, and authorities (Government of Ireland, 2020). This disjointed service leads to challenges with the sharing of information across departments and agencies. It has presented additional barriers for people with neuromuscular conditions with some reporting that there needs to be a clear pathway when applying for and securing funding for housing adaptations. The system is riddled with contradictions and complexity. Many people with disabilities cannot receive personal assistant (PA) services from the HSE without a home. Yet they will not be offered a home from their local authority without guarantee that they will receive services.
MDI recommendations
Establish a strong, agreed definition of disabled housing standards in Ireland, including what is classified as ‘wheelchair liveable’. A clearly defined standard of accessible housing, in addition to the UD Homes+ guidelines (Centre for Excellence in Universal Design, n.d.), could allow for those operating in the private housing sector to better advertise their homes as being suitable for people with disabilities.
Align the recommendations of Housing for All - a New Housing Plan for Ireland with the National Housing Strategy for Disabled People 2022-2027 (NHSFDP, 2022).
Increase awareness and understanding of disability and housing within the relevant organisations around the inclusion of disabled people in their communities.
Allocate sufficient resources to ensure the success of the National Housing Strategy for Disabled People 2022-2027, following its yearlong delay.
Provide sufficient levels of housing for all people with disabilities and work in collaboration with all providers and invested parties to ensure a seamless, accessible, and fair pathway for all citizens, in line with our obligations under the UNCRPD.
Disability Federation of Ireland (DFI) asks
Realising housing for all: Provide funding to implement the National Housing Strategy for Disabled People 2022-2027.
The Department of Housing, Local Government and Heritage to make the role of Access Officer full-time in every local authority - with a grade and salary appropriate to the role, senior enough to be able to properly implement change. Cost: €1.5 million/year.
Transport
In Ireland, many people with neuromuscular conditions are isolated in their homes due to the lack of accessible transport. Transport is key for people with physical disabilities to live independently and participate fully in all aspects of life. Transport costs are an extra living cost that some people with disabilities are unable to afford. The Cost of Disability in Ireland report indicated that costs relating to transport were estimated to be €3,241 a year on average amongst those who indicated a cost in those areas that they could not afford.
MDI recommendations
Develop a plan to provide equitable access to transport across disability services, health and education, in collaboration with people with disabilities, disability organisations and relevant Departments.
Review the Disabled Drivers and Passengers Scheme and other supports so that people can afford to buy an adapted car. Adequately replace the Motorised Transport Grant and the Mobility Allowance.
Extend the Travel Assistance Scheme nationwide; ensure it responds to the needs of people with disabilities in their own locality and build their confidence when using public transport.
Apply a large weighting to taxi operators with accessible vehicles in tender processes when awarding state contracts to encourage more companies to have wheelchair Accessible Vehicles.
Invest in transport infrastructure that supports accessibility, mobility, and inclusion for people with a disability in rural areas.
Disability Federation of Ireland (DFI) asks
Investment by the Department of Transport in increased accessibility and frequency of Local Link Transport services for disabled people living in rural areas.
Cost of Disability: Urgent establishment of a Transport Support Scheme to replace the Mobility Allowance, Motorised Transport Grant, and other transport schemes, as per the Ombudsman’s longstanding recommendation.
Extend the criteria for a disabled parking badge to include categories of disability currently excluded.
Employment
Article 27 of the UN Convention on the Rights of Persons with Disabilities affirms the right of persons with disabilities to work on an equal basis with others. People with disabilities experience multiple barriers to accessing employment, including financial barriers, negative societal attitudes, environmental barriers, the education system and lack of opportunity.
MDI recommendations
Inform prospective employers of the supports that are available for their business to support employees with a disability.
Review the Employer Retention Scheme, to ensure it is easily accessible.
Include the voice of people with disabilities in all stages of planning and implement these supports to ensure they meet the needs of the community.
Take a whole system approach to educating employers about the benefits of hiring someone with a disability.
Enforce a “no tolerance approach” to stigma and discrimination based on a person’s disability.
Establish a dedicated, centrally based national resource of peer advice and information for employers on the employment of persons with disabilities.
Disability Federation of Ireland (DFI) asks
Raise the Disability Allowance income disregard by at minimum €25 and increase the upper earnings disregard limit to €450.
Roll out the new Reasonable Accommodation Fund (RAF) and provide sufficient funding for its operation in 2025.
Change criteria for the medical card (Department of Health) and other entitlements like the free travel scheme to link them to medical need and disability status, rather than means-testing. Remove the 5-year time limit on entitlement for those who work.
Link the Wage Subsidy Scheme (WSS) to increases in the National Minimum Wage and restore it to 70% of the minimum wage.
Provide sufficient funding to resource actions under the Employment pillar of the National Disability Strategy (DETE, DSP, DCEDIY, DFHERI etc), including actions to specifically address the Cost of Disability and its impact on employment.
Education
In 2015 higher education institutions where obliged to ensure that all buildings on their campus are accessible. However, there are exemptions to this act, and the higher education institutions are using these exemptions as an excuse for inaction. We see this instead as a challenge to be overcome with a shared approach. The first step is to identify the current weakness of our institutions.
MDI recommendations
The Association on Higher Education and Disability and Minister for Further and Higher Education, Research, Innovation and Science should audit the accessibility of our main universities.
Public bodies such as colleges and universities must ensure that buildings and services are accessible to people with disabilities per the Disability Act (2005).
Higher Education Institutes must integrate disability service provision with mainstream services.
DFI asks of relevance
One of the key goals of the UN CRPD is for people with disabilities to be part of their community. This does not just mean living in the community, it means being able to go out in your community, to participate in community events, to work, to be educated and to join in public life in the same way as everyone else. DFI has commissioned research to examine implementation of the UN CRPD at a local authority level and findings will be available towards the end of the year. Provisional data shows that there is inconsistency and lack of standardisation of approaches to disability inclusion across each of the local authorities. For this goal to be realised, government at all levels and in all Departments must collaborate. Health care, home supports, community services, local engineers and planners, housing, and transport all need to work together to create disability-friendly communities where differences are accepted, and everyone receives the support they need to be a real part of their community. There must also be flexibility as each individual will need distinct kinds of supports. In addition, rural and urban settings will also require different approaches and joined up thinking.
A new programme to create disability inclusive communities, similar to the current Age Friendly programme. This programme would provide reliable, sustained funding to make communities more open and inclusive to people with disabilities.
The Department of Housing, Local Government and Heritage to make the role of Access Officer full-time in every local authority - with a grade and salary appropriate to the role, senior enough to be able to properly implement change.
Funding of €2 million for digital assistive technology supports, including a national network, AT Passport, loan library, national funding database, website, training programme and peer support development programme.