DRAFT – DSI Submission – Disability Act Review

Submission to the Review of the Disability Act 2005

Down Syndrome Ireland welcomes the review of the Disability Act 2005 and the opportunity to strengthen Ireland’s legislative framework for people with disabilities. More than twenty years after the Act was introduced, there remains a significant gap between the identification of disability-related need and the delivery of the services, supports and opportunities required to meet that need.

For people with Down syndrome and their families, this gap is experienced throughout life: in waiting for therapies and supports in childhood; navigating education and transition; accessing employment and adult services; planning for greater independence; securing appropriate housing and community supports; and responding to changing needs later in life. The review must therefore be about more than improving existing processes. It should strengthen the connection between rights, responsibility and delivery.

The Disability Act 2005 predates Ireland’s ratification of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). DSI’s central recommendation is that the revised Act should give practical effect to the Convention through clear domestic duties, accessible remedies and measurable delivery. The UNCRPD should be the organising framework for this review and the benchmark against which proposed reforms are assessed.

The Convention’s principles of dignity, autonomy, equality, accessibility and participation should inform every provision of the revised Act (Articles 3 and 5). Article 4 requires legislative and administrative action to implement Convention rights. DSI therefore proposes that Government publish an assessment mapping the revised Act and any necessary changes to related legislation against those rights, identifying the responsible public bodies and how implementation will be measured.

People with disabilities must help shape this work through their representative organisations, as required by Article 4(3). For people with Down syndrome, that means accessible opportunities to influence the review and its implementation. This submission draws on the lived experience of DSI members and families, including feedback from our National Advisory Council (NAC) and Regional Advisory Councils.

Disability rights are human rights. Infrastructure, services and supports necessary to exercise those rights should be treated as core public-service obligations, not optional enhancements that can be deferred indefinitely.

Down Syndrome Ireland’s Unity 2026–2030 strategy sets out our ambition for one community in which people with Down syndrome are Heard, Valued and Included, and able to access a consistent standard of support regardless of where they live.

The revised Act should begin with an inclusive definition of disability and an explicit rights-based purpose. The seven connected priorities below set out how that foundation should translate into delivery. These are recommendations for domestic legislative reform, including coordinated changes to other Acts where necessary.

The purpose and scope of the revised Act

The Act’s long title links assessment and services to available resources and promotes equality and social inclusion. Its principal mechanisms address assessment, service statements, accessibility, sectoral planning, genetic testing, public service employment and Universal Design. DSI recommends a broader statutory purpose: securing equal participation, autonomy and community living through enforceable duties across Government. Promoting inclusion should be accompanied by a duty to remove barriers and provide the supports that make equality effective. [1]

The review should align the Act with the Assisted Decision-Making (Capacity) Act 2015, as amended, whose principal provisions commenced in April 2023. It should reinforce supported decision-making, respect for the person’s will and preferences and safeguards against undue influence. Disability or communication difficulty must not be treated as proof that a person cannot make a decision. [2]

Replace the definition of disability

Section 2 defines disability through a substantial restriction in a person’s capacity to work or participate in social or cultural life arising from an enduring impairment. Section 7 adds a Part 2 threshold. DSI recommends reviewing both together so that reform of the general definition is not undermined by a separate restrictive gateway to assessment and support. [1]

DSI supports DFI’s recommendation to adopt a social and human rights approach. The definition should recognise that disability arises through the interaction between impairments and barriers in society. The statutory focus should be on removing those barriers and enabling participation, rather than measuring a person against assumptions about productivity or self-sufficiency. Children, older people and people outside paid work must be equally recognised. [3]

Article 1 of the UNCRPD provides the starting point, as highlighted in DFI’s submission:

“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” [3, 4]

The revised definition should expressly encompass visible and invisible disabilities, including psychosocial and cognitive disabilities. DFI also identifies temporary and episodic disability. Domestic drafting should address these and fluctuating conditions expressly, rather than assuming that the Convention’s reference to long-term impairments resolves every eligibility question. Harmonisation with equality legislation should preserve existing protections and avoid narrowing anyone’s rights. [3]

DSI recommends that the legislation separate recognition of disability from the assessment of an individual’s support requirements. Access to a particular support may require an appropriate assessment of need, but a person should not have to demonstrate incapacity for work, dependence or an inability to participate before receiving protection against barriers. Nor should support depend on proving a prospect of becoming independent without assistance. Independence includes exercising choice with whatever support the person requires.

Article 8 should inform a corresponding duty to challenge stereotypes and promote awareness of the capabilities and contributions of people with disabilities. Training, public information and service design should reflect this approach. Government should publish the proposed definition alongside an explanation of its effect on eligibility across the Act and related legislation, developed with people with disabilities. [4]

1 Move from identifying need to meeting need

The most important reform is to create an enforceable connection between the identification of a person’s needs and the delivery of the support required to meet them.

Articles 25 and 26 address equal access to health and the services that support independence, abilities and inclusion. DSI’s proposed duty to connect assessed need with timely support would give these rights practical effect. Services must respect the person’s choices and consent; an assessment should enable access to support, not remove control over decisions.

Part 2 provides for assessment, service statements and redress, but section 11 subjects the service response to resource and practicability considerations. Sections 14–22 already provide complaint and appeal mechanisms. Reform should strengthen this framework so remedies address unmet need as well as procedural failures. [1]

Families are very familiar with assessments. A child may be assessed as requiring speech and language therapy, occupational therapy, physiotherapy, psychological support or another intervention. Yet an assessment confirming that a service is required does not necessarily result in that service being provided.

An assessment cannot be considered an effective right if the individual then enters another lengthy waiting process for the intervention that has already been identified as necessary. Where an assessment identifies a disability-related health, therapeutic or support need, the legislation should create an enforceable entitlement to an appropriate response within a defined timeframe.

The individual and family should know:

• what service or support will be provided;
• who is responsible for providing it;
• when it will be provided;
• what happens if the statutory or agreed timeframe is not met; and
• what independent mechanism exists to challenge failure and secure a remedy.

Service plans should contain meaningful delivery timelines rather than statements of aspiration.

Where statutory timelines are breached, the individual should have access to a timely remedy that does not require costly court proceedings. Remedies could include mandatory service provision, alternative commissioned provision, reimbursement of reasonable costs incurred in obtaining an appropriate service elsewhere and, where appropriate, compensation.

DSI recommends amending sections 5 and 11 together to connect assessed need with a funded, time-bound service duty. The revised scheme should identify urgent and interim supports, provide a named coordinator and specify escalation when provision is delayed. People should also be able to access suitable services directly where a further formal assessment is unnecessary; referral and signposting must lead to available support, not another administrative queue.

The principle should be simple: identifying a need must create a duty to respond to that need.

This is particularly important for people with Down syndrome because timely intervention can have a significant impact on communication, development, education, independence and participation.

2 Create a whole of life framework

Disability legislation must reflect the reality that people with Down syndrome may require different forms of support throughout their lives.

A whole-of-life framework should connect inclusive education and lifelong learning (Article 24), work in an open and inclusive labour market (Article 27), and independent living and inclusion in the community (Article 19). Article 12 requires equal recognition before the law and access to support in exercising legal capacity. The person’s will and preferences must guide planning, including choices about where and with whom to live. Children must also have support to express their views on matters affecting them (Article 7).

Needs change. They do not disappear when a child leaves early intervention, finishes school or reaches the age of 18. The revised Act should therefore adopt a life-course approach and place greater responsibility on public services to plan for important transitions, including:

• into and through education;
• from school into further education, training or employment;
• from children’s to adult disability services;
• towards greater independence;
• into appropriate housing and community supports; and
• into later life as health and support needs change.

Too often, families reach a transition point and effectively have to begin again. Responsibility can move from one service or Department to another, information is not transferred effectively and support can reduce precisely when continuity is most important.

Transition planning should provide clear, accessible routes into further and higher education, training and employment, with named responsibility for coordinating the support each person needs to take up and sustain their chosen option. Members’ experience of difficulty securing college places demonstrates why continuity must be a statutory requirement.

The revised Act should drive much stronger coordination between health, education, disability services, employment, housing and social protection. The person should remain at the centre. Public services should organise around the individual rather than expecting the individual and their family to continuously navigate disconnected systems.

Planning for appropriate housing and community supports must also begin before families reach crisis point. The State should have explicit obligations to increase the supply of accessible and adaptable housing and to embed Universal Design and accessibility requirements in publicly funded housing programmes and relevant housing standards, supported by measurable delivery targets.

Choice and support throughout life

DSI recommends a statutory entitlement to a coordinated life-course support plan, developed with the person, reviewed regularly and updated before significant transitions. The plan should identify the lead body, contributions required from other agencies, funding, deadlines and the arrangements that prevent a gap in support when responsibility transfers. Services should develop and maintain skills and independence, and respond to changing needs in later life. This gives practical direction to the habilitation and rehabilitation principles in Article 26; it does not assume that identical care is appropriate at every age. [4]

Article 19 places choice of where and with whom to live, and access to community supports, at the centre of independent living. DSI recommends enforceable planning and delivery duties for housing and support services, including personal assistance where needed. A housing offer without appropriate support cannot deliver that choice. Planning should anticipate ageing, changing health needs and the reduced availability of family care, while respecting the person’s own preferences. [4]

Financial security and family future planning

Independent living also requires financial security. Drawing on Articles 19 and 28, DSI recommends coordinated reform of disability income supports, housing supports and the treatment of disability-related costs, so that people can sustain community living without entrenched poverty. [4]

Government should review how pensions, trusts, gifts and inheritance intended to provide for a person with a disability interact with taxation, means tests and access to essential supports. DSI recommends protected arrangements that allow families to provide for future disability-related needs without an automatic or disproportionate loss of essential benefits or services. The review should specify appropriate disregards, safeguards and accessible advice, and identify the tax, social welfare and pensions legislation requiring amendment. This is a proposed policy reform, not a claim that the UNCRPD creates a blanket tax exemption or an existing exemption from means testing.

This whole-of-life approach is central to Unity 2026–2030 and DSI’s commitment to supporting people with Down syndrome at every stage of life.

3 Establish national standards and end the postcode lottery

A right established in national legislation should not depend substantially on where a person lives. Yet families continue to experience significant geographical variation in access to specialist supports, services, employment opportunities and community-based provision. Local delivery will always be necessary, but it should operate within a clear national framework.

The revised Act should establish stronger national expectations around access and delivery, supported by transparent information on regional performance.

National standards should advance equality and non-discrimination under Article 5 and equal access to environments, transport, information and services under Article 9. DSI recommends that regional reporting assess whether people can exercise these rights in practice, including whether transport enables access to education, employment and community life.

There should be:

• national minimum standards;
• clear service expectations and statutory timelines where appropriate;
• comparable waiting-time and service data;
• transparent reporting on regional variation;
• identified responsibility for addressing persistent gaps; and
• national oversight of implementation.

People with Down syndrome and their families should not face fundamentally different opportunities because of their postcode. A national disability framework must deliver meaningful national standards.

Transport must form part of this national approach. Members’ experience of unavailable or unreliable transport shows how service gaps restrict routine, choice and independence. National standards should cover availability, reliability, accessibility and affordability, in rural as well as urban areas. Article 9 addresses accessible transport and environments; Article 20 addresses personal mobility with the greatest possible independence. DSI recommends clear duties to plan accessible journeys, assistance, mobility aids and relevant training, with named responsibility for resolving gaps. Choice of residence is addressed under Article 19 and should not be constrained by the absence of transport or support. [4]

4 Build a reliable national picture of people with disabilities and their needs

Good services cannot be planned without good information.

Article 31 provides the basis for collecting and using information to implement the Convention, identify barriers and assess progress, with safeguards for confidentiality and privacy. The national data framework should therefore measure the enjoyment of rights and unmet need, alongside service activity. Findings should be accessible to people with disabilities and inform action to remove barriers.

A significant weakness in the current system is the absence of a reliable and connected national picture of people with Down syndrome: where they live, the services they receive, the services they are waiting for, their unmet needs and how those needs are likely to change throughout life.

Information can sit across different parts of the health, education, disability, housing and social protection systems without creating a coherent picture of the individual or of population need. If Government does not know accurately who requires services, where they are, what support they are receiving and what they are likely to need in the future, it is extremely difficult to plan workforce, funding, infrastructure and services effectively. It also makes it much harder to identify geographical inequality or establish whether national policy is improving people’s lives.

The revised disability framework should therefore support the development of a reliable, privacy-respecting national disability data framework. This should not mean the creation of a separate register of people with Down syndrome. The purpose should be to ensure that relevant public bodies can build a more accurate, joined-up picture of population need, service access, unmet need and future demand, while fully respecting privacy, consent, autonomy and data-protection rights.

Section 13 already provides for records and reporting of needs and services. DSI recommends extending this into coordinated forecasting across agencies, including unmet need and future transitions, with clear legal bases and safeguards for any sharing of personal data. [1]

Government should be able to understand, at national and regional level:

• the number and age profile of people requiring disability supports;
• where people live;
• what services and supports people are receiving;
• waiting times and unmet need;
• significant transition points;
• emerging health and support needs;
• demand for employment, housing, independent living and community supports; and
• likely future service requirements.

Relevant public bodies should also be required to improve appropriate and lawful data sharing so that people and families are not repeatedly providing the same information to disconnected systems.

Data should be collected for clear purposes, with transparent governance and appropriate safeguards. For Down Syndrome Ireland, this is also a question of accountability.

We cannot properly measure equality, identify gaps or plan future services if we do not have reliable information about what people receive and what they need.

5 Make accessibility and Universal Design and participation real

Accessibility must be understood more broadly than physical access. For people with Down syndrome, a building can be physically accessible while the service delivered inside it remains inaccessible.

Articles 9 and 21 place accessibility and access to information at the centre of participation. Articles 2 and 5 also connect equality with reasonable accommodation: adjustments needed by an individual must sit alongside improvements designed for everyone. DSI recommends that the revised Act make both responsibilities clear. Accessible participation in public decisions should give effect to Articles 4(3) and 29.

Information may be too complex. A website may be difficult to navigate. Public-service processes may assume levels of literacy or cognitive processing that exclude some people with intellectual disabilities. Consultation processes may technically be open to everyone but be designed in a way that makes meaningful participation impossible.

The revised Disability Act should recognise physical, digital, communication and cognitive accessibility. Public bodies should be required to provide information in accessible formats and to apply statutory Universal Design standards when designing, procuring, developing or substantially refurbishing public services, infrastructure, information systems and buildings. Priority areas should include transport, housing, healthcare, digital public services and public information.

Accessibility duties and publicly funded provision

Sections 25–28 address buildings, services, procurement and information; section 27 already reaches services supplied to public bodies. DSI recommends clearer coverage, narrower exceptions and enforceable standards. [1] Publicly funded provision should meet the same accessibility requirements whether delivered directly or through private, voluntary or commercial providers. Contracts, grants and procurement should include measurable obligations, monitoring, corrective action and continuity safeguards for people using the service.

Universal Design should be required from the earliest planning stage, including publicly funded housing, digital systems and substantial refurbishment. Standards should address cognitive and communication accessibility alongside physical access, and should be developed with people with disabilities. Universal Design must complement individual reasonable accommodation. The Centre for Excellence in Universal Design should have a clear role in developing and updating standards, with responsibility for enforcement assigned explicitly.

Access Officers should have defined duties, sufficient seniority, training, dedicated time and a budget. DSI supports a properly resourced senior role in each local authority, with national guidance and published reporting. The revised complaints framework should make it clear how to report an inaccessible service and who must act.

Accessible information and participation

Accessible information should be a mainstream public-service obligation rather than something produced primarily for disability-specific initiatives. Important public information — including information relating to elections, public consultations, health, social protection, housing and public services — should be available in appropriate accessible formats, including Easy Read where required.

Easy Read information should be planned and funded as part of communicating important public information, with people with intellectual disabilities involved in checking that it is understandable and useful. Other accessible formats and communication supports should be available according to the person’s requirements.

As more Government services move online, digitalisation must not create a new form of exclusion.

Accessibility failures must also be treated with the same urgency as failures affecting the general population. If the doors of a train could not open, the train could not operate as normal. Yet a station lift being unavailable can effectively close that same transport service to a wheelchair user. The revised Act should ensure that accessibility failures are treated as service failures, rather than secondary accessibility issues.

The same principle must apply to participation. People with Down syndrome should have meaningful opportunities to contribute to decisions affecting their lives. That requires accessible information, sufficient time, appropriate communication supports and different ways of contributing.

Families also bring considerable experience of navigating health, education and disability systems and that experience should inform policy development. However, the voice and rights of the person with Down syndrome must remain central.

People with disabilities, including people with intellectual disabilities, should be involved not only in consultation but in the design, implementation and monitoring of the systems that affect their lives. They should also have an ongoing role in monitoring implementation of the revised Act rather than being consulted only during its development.

Being Heard Valued and Included must have practical meaning within public decision-making.

6 Introduce stronger accountability when the State does not deliver

Rights and statutory obligations require effective accountability. At present, individuals and families frequently carry too much responsibility for pursuing services, challenging delays and trying to establish which public body is responsible when something does not happen.

That burden needs to shift.

Article 33 distinguishes Government responsibility for implementation and coordination from independent monitoring, and requires the involvement of people with disabilities in monitoring. The revised Act should reinforce this framework and clearly allocate responsibilities across it. DSI proposes accessible enforcement and redress alongside independent monitoring; Article 13’s requirement for effective access to justice should inform the design of those routes.

DSI supports DFI’s proposal for a Disability Ombudsman, or a comparably empowered independent statutory disability rights function. Its remit should include individual complaints, own-initiative and systemic investigations, binding compliance notices, deadlines for corrective action and accessible redress. The legislation should define its relationship with existing complaints and appeals bodies, the Ombudsman, the Workplace Relations Commission and independent UNCRPD monitoring, preserving existing rights of appeal and avoiding duplicate processes. It should report to the Oireachtas and involve people with disabilities in oversight. A person approaching the wrong body should receive supported referral to the correct route. [3]

This should include:

• independent monitoring;
• powers to investigate systemic or repeated failure;
• compliance notices and time-bound requirements for corrective action;
• accessible complaints, appeals and redress mechanisms;
• transparent reporting of performance; and
• progressive sanctions where statutory obligations are persistently not met.

The objective of sanctions should be compliance, not punishment. Enforcement should create a clear incentive to correct persistent failures quickly.

If an inaccessible lift at a transport station remains out of service for an unreasonable period, repairing it should become the obvious course of action. If accessibility standards are persistently missed, corrective action should follow and consequences should escalate where the failure continues.

If statutory service timelines are repeatedly breached, the responsible public body should have to explain why, identify how the problem will be addressed and demonstrate improvement. There must ultimately be consequences where statutory obligations are repeatedly ignored.

Without that accountability, families remain dependent on their own ability to advocate, complain, pay privately or pursue redress. That is neither equitable nor sustainable.

7 Match rights with sustainable funding and measurable delivery

A stronger Disability Act must be supported by the resources required to implement it. Down Syndrome Ireland recognises that disability services and accessible infrastructure require sustained investment.

Therapies require qualified professionals. Inclusive employment requires properly resourced supports. Accessible housing requires planning and capital investment. Community participation and independent living require appropriate services and supports.

However, resource limitations cannot become a permanent explanation for non-delivery. Disability services and infrastructure required to uphold people’s rights should be regarded as core Government responsibilities.

DSI is particularly concerned where statutory obligations are qualified by provisions such as delivery being ‘consistent with the resources available’. Such qualifications risk making the exercise of rights dependent on administrative and budgetary decisions rather than objectively assessed need. The revised Act should substantially narrow such qualifications and distinguish clearly between legitimate progressive realisation and indefinite non-delivery.

Article 4(2) requires States to take steps, using the maximum of their available resources, towards progressively realising economic, social and cultural rights, without prejudice to obligations that apply immediately under international law. DSI recommends that the revised Act make this distinction explicit. Progressive realisation should require a funded plan, measurable milestones, published timelines and identified responsibility; it must not become a blanket justification for delay or discrimination.

That should include:

• measurable national targets;
• published timelines and milestones;
• identified departmental and agency responsibility;
• transparent resourcing and workforce planning;
• regular public reporting;
• reliable national and regional data against which progress can be measured;
• independent review of progress; and
• corrective action where implementation is falling behind.

Progressive implementation must mean demonstrable progress rather than indefinite postponement.

Part 5 should be strengthened beyond numerical employment targets. DSI recommends enforceable duties on accessible recruitment, reasonable accommodation, supported employment, fair pay and conditions, retention, career progression and return to work after acquiring a disability. Public bodies should publish outcomes and corrective plans, including whether people with intellectual disabilities are benefiting. Monitoring must protect privacy and must not make individuals responsible for proving an employer’s compliance.

This approach is particularly important in employment, housing and independent living. Employment targets should not simply measure how many people with disabilities are employed. Public bodies should also demonstrate progress in recruitment, reasonable accommodation, retention and progression.

Employment data should, where lawful and statistically robust, be sufficiently disaggregated to establish whether people with intellectual disabilities are benefiting from statutory employment measures. Aggregate disability employment targets can conceal very low participation among particular disability groups.

Similarly, planning for appropriate housing and community supports must begin before families reach crisis point. Adults with Down syndrome should have realistic options for living within their communities with the support they require.

Government needs to be able to anticipate those needs, plan for them and be accountable for progress towards meeting them.

Protect against discrimination involving genetic information

The review should examine whether Part 4 protections operate effectively alongside equality and data-protection law. DSI supports DFI’s call to examine disability-related discrimination in insurance and its consequences for housing, financial services and employment. Government should review the information insurers and employers may seek, including diagnosis and family history, and address routes by which genetic information may be inferred. Any proposed exceptions should be transparent, necessary and proportionate, with accessible independent challenge. The review should specify consequential changes required in equality and financial services legislation rather than assume that amending the Disability Act alone will resolve these barriers. [3]

What Down Syndrome Ireland is asking Government to deliver

The overarching requirement is a revised Act aligned with the UNCRPD, beginning with an inclusive social and human rights definition of disability and an explicit purpose of securing autonomy, equality and participation. Related legislation and eligibility rules should be aligned without reducing existing protections. Government should demonstrate how the following commitments implement Convention rights and involve people with disabilities in assessing progress.

1. Connect identified need with timely service delivery, by creating an enforceable connection between assessed need and an appropriate service response, with statutory timelines and effective remedies where services are not delivered.

2. Establish a whole-of-life approach, with coordinated support plans, supported decision-making and continuity across education, employment, housing, independent living and later life. Review financial provisions so that families can plan for future disability-related needs without disproportionate loss of essential supports.

3. Create stronger national standards, reducing geographical inequality and ensuring that access to disability supports does not depend on postcode, with transport availability, reliability and accessibility included in planning and delivery.

4. Establish a reliable, privacy-respecting national disability data framework, allowing Government to understand population need, service access, waiting lists, regional inequalities and future demand without creating an unnecessary or intrusive condition-specific register.

5. Create statutory accessibility and Universal Design obligations, covering physical, communication, cognitive and digital accessibility, including publicly funded and contracted provision, together with meaningful participation and co-production.

6. Strengthen accountability and enforcement through a Disability Ombudsman or equivalent statutory function, with investigation, binding compliance notices, corrective action, accessible redress and clearly coordinated complaint routes.

7. Match rights with sustainable funding and measurable implementation, including workforce and infrastructure planning, employment quality and progression, published timelines, transparent resourcing and public reporting. Review protections against discrimination involving genetic information and the related barriers to insurance, housing and employment.

Conclusion

For people with Down syndrome and their families, the success of this review will be measured by whether UNCRPD rights can be exercised in everyday life. The revised Act should turn those rights into clear responsibilities, practical support and effective accountability.

Can a child receive the intervention they need when it will make the greatest difference?

Can families understand what support will be provided, when it will be provided and what remedy exists if it is not?

Do we know enough about people with Down syndrome across Ireland to plan the services they will need now and in the future?

Can a young person move from school into further education, training or employment without falling between systems?

Can an adult with Down syndrome access meaningful employment and participate fully in their community?

Can people rely on accessible transport to get to college, work, services and community activities without depending on family members for lifts?

Can they have realistic opportunities to live with greater independence?

Can families plan for later life with confidence rather than waiting until a crisis develops?

And when the State accepts a responsibility towards a person with a disability, is there meaningful accountability for delivering on it?

Down Syndrome Ireland believes the review of the Disability Act provides an opportunity to answer these questions differently.

Ireland needs to move towards a framework in which people with disabilities are recognised as rights-holders; rights are reflected in enforceable duties and services; identifying need creates responsibility; good data informs planning; national commitments produce consistent local delivery; accessibility and Universal Design are mainstream obligations; people with disabilities help shape the systems that affect them; and public bodies can be held accountable when statutory obligations are not met.

That would provide an important statutory foundation for the ambition at the heart of Unity 2026–2030: one community in which people with Down syndrome are Heard and Valued Included throughout their lives.

Sources and legislative references

[1] Disability Act 2005, as revised by the Law Reform Commission to 2 April 2025, especially sections 2, 5, 7–14, 18–22, 25–28 and Parts 4–6. https://revisedacts.lawreform.ie/eli/2005/act/14/revised/en/html

[2] Decision Support Service, Legislation, on the Assisted Decision-Making (Capacity) Act 2015, as amended, and commencement in April 2023. https://www.decisionsupportservice.ie/about-us/legislation

[3] Disability Federation of Ireland, Disability Act 2005 Review Submission, draft supplied for this review, particularly Part 1 Definition of Disability and proposals on accessibility, employment, genetic information and a Disability Ombudsman.

[4] United Nations Convention on the Rights of Persons with Disabilities, particularly Articles 1–5, 7–9, 12–13, 19–21, 24–29, 31 and 33. The Article 1 wording is reproduced as cited in DFI’s supplied submission. https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities

Additional review input: Dr Jean Antoine Dunne, Review of Disability Act 2005, notes supplied September 2026. Recommendations in those notes have been incorporated with the legislative and Convention references clarified.

DRAFT

Plain English Version

The Government is reviewing the Disability Act 2005.

The Disability Act is a law about the rights and supports of people with disabilities.

Down Syndrome Ireland thinks the law needs to be stronger.

The law was made before Ireland agreed to follow the UN Convention on the Rights of Persons with Disabilities.

This Convention is an agreement about the human rights of people with disabilities.

It is called the UNCRPD for short.

Ireland has agreed to follow it.

We want the Disability Act to help make these rights real.

We want a better definition of disability, as well as the 7 changes below.

People with Down syndrome should be treated as people with rights. They should not have to depend on services only being available when there is enough money, staff or space.

Our DSI strategy is called Unity 2026–2030.

Our aim is for people with Down syndrome to be: Seen. Heard. Valued.

We want the Disability Act to help make this happen.

DSI’s NAC members shared their views.

Their feedback is included in this document.

A better definition of disability

The law should recognise the barriers that people face.

A barrier is something that makes it harder to take part.

A barrier might be information that is hard to understand.

It might be transport that you cannot use.

It might be someone assuming that you cannot do something.

The law should help remove these barriers.

It should include disabilities that people can see and disabilities they cannot see.

It should also protect people whose disability changes over time.

Your rights should not depend on whether you have a job.

You can make choices and be independent while getting support.

The 7 things DSI wants to change

1. If you need support, you should get support

The UNCRPD says people have a right to healthcare without discrimination.

It also says people should have support to develop their skills and independence.

You should be involved in decisions about your support.

People with Down syndrome may have an assessment. An assessment looks at what support a person needs.

For example, a person may need speech and language therapy, occupational therapy, physiotherapy, psychological support or another service.

At the moment, an assessment does not always mean that the person gets the service. Sometimes people wait a very long time.

We think this should change.

NAC members said there should be more supports and services available.

If an assessment says a person needs a service, there should be a clear plan. The person and their family should know what support they will get, who will provide it, when they will get it and what they can do if the service is not provided.

If Government does not provide the service on time, there should be a clear way to fix the problem. A family should not have to go to court just to get the support that has already been identified.

Finding out what a person needs is not enough. The person should also get the support they need.

2. Support should be there throughout your life

The UNCRPD includes rights to education, work and life in the community.

You have a right to make your own choices.

You should get support to make decisions if you need it.

Children should also have help to give their views.

People with Down syndrome may need different supports at different times in their lives.

Support should not stop because somebody turns 18 or finishes school.

People may need support as a child, in school, when leaving school, when looking for work, when becoming more independent, when looking for somewhere to live and as they get older.

Government services should work together. People and families should not have to start all over again every time they move to a new service.

Government should also plan for accessible homes and community supports before a family reaches a crisis.

The person should be at the centre of the plan.

NAC members said it can be hard to get a college place.

They should not have to fight for their rights to get a place.

The steps to college should be easy to understand and follow.

People should know who can help them.

NAC members also said that job opportunities are very important for adults.

We want you to have a support plan that changes as your needs change.

The plan should say who must help and when.

You should have support to choose where and with whom you live.

We want Government to make it easier for families to plan for future support.

This includes reviewing rules about money saved or left for a person with a disability.

These are changes we are asking for. They are not new rules that already apply.

3. Where you live should not decide what support you get

The UNCRPD says people with disabilities have equal rights.

Transport and services should be accessible wherever you live.

Services can be different in different parts of Ireland.

A person in one county may get a service quickly. A person with the same need somewhere else may wait much longer.

We do not think this is fair.

There should be clear standards for disability services across Ireland.

Government should check waiting times, what services are available, where there are gaps and what is being done to fix those gaps.

Your postcode should not decide your opportunities or the support you receive.

NAC members said some areas do not have transport.

Where transport is available, people cannot always rely on it.

This makes it harder to plan their day and be independent.

People often have to ask family members for lifts.

Government should plan transport that people can use and rely on.

People need transport to get to college, work, services and activities.

4. Government needs better information

The UNCRPD says Government should collect information to help make rights real.

It must protect people’s privacy.

At the moment, there is not enough reliable information about people with Down syndrome in Ireland.

Government does not have a clear picture of how many people need disability supports, where people live, what age people are, what services they get, what they are waiting for and what they may need in the future.

This makes it harder to plan good services.

Government services also do not always share information well.

We want Government to have better information so it can plan for the future.

This does not mean making a special register of everyone with Down syndrome. People’s privacy must always be protected.

Government cannot plan good services if it does not know what people need.

5. Services and information must be accessible

The UNCRPD says people have a right to accessible information and services.

You may need changes to a service so that you can use it.

People with disabilities must help shape decisions that affect them.

Accessibility is not only about ramps, lifts and buildings.

Information must also be easy to understand. Websites and online services must be easy to use.

Important Government information should be available in accessible formats, including Easy Read when people need it.

NAC members said they would be more likely to read information if there was an Easy Read option.

People with intellectual disabilities should help check that information is easy to understand.

New public buildings, transport, housing and services should be designed so that as many people as possible can use them. This is called Universal Design.

NAC members also said that buildings and other public places must be accessible.

If a lift is broken in a train station, a wheelchair user may not be able to use the train at all. Problems like this should be treated as urgent service problems.

People with Down syndrome must also be involved in decisions. They should have enough time and support to give their views.

People with Down syndrome should be part of decisions about their own lives.

A service paid for by Government should be accessible even if another organisation runs it.

People should know who to contact when a service is not accessible.

6. Government and public services must be accountable

The UNCRPD says there must be independent checks on how it is put into practice.

People with disabilities must be involved in these checks.

People must be able to use the justice system.

A law only works if people and organisations have to follow it.

At the moment, families often have to fight for services themselves. They may have to make lots of phone calls, send emails, make complaints or keep asking why a service has not been provided.

We think the system should carry more of this responsibility.

NAC members want clear rules that make Government responsible for providing supports and services.

There should be an independent way to check whether the law is being followed.

If a public service keeps failing, it should have to explain what went wrong, fix the problem, make a plan to improve and face stronger consequences if the problem continues.

The aim is not to punish people. The aim is to make sure services do what they are supposed to do.

Families should not have to fight again and again for the same rights.

We support having a Disability Ombudsman or another independent office with similar powers.

This office should help people with complaints about disability rights.

It should have powers to make services fix problems.

7. Government must fund and plan disability services properly

The UNCRPD says Government must use the resources it has to make progress on rights such as health and education.

Some duties must be met straight away.

Government cannot use a plan for the future as an excuse to discriminate.

Good services need proper funding.

We need enough therapists, employment supports, accessible homes, community supports, accessible transport and other disability services.

Government may not be able to fix every problem straight away. But it must have a clear plan.

The plan should say what will improve, when it will improve, who is responsible, what money and staff are needed, how progress will be measured and what will happen if progress is too slow.

A lack of money should not be used forever as a reason why a person cannot get their rights.

People with Down syndrome should also have better opportunities to work and to live more independently. Government should plan for these needs before families reach a crisis.

A plan must lead to real progress. It cannot just be a promise.

What DSI is asking Government to do

1. If a need is identified, there is a legal duty and a clear plan to respond to it on time.
2. People get support throughout their whole lives.
3. People get fair services wherever they live in Ireland.
4. Government has reliable information so it can plan services properly, while keeping people’s information safe.
5. Information and public services are accessible and use Universal Design, and people with Down syndrome are involved in decisions.
6. There are independent checks, clear ways to fix problems and stronger consequences when public bodies repeatedly fail to follow the law.
7. Government properly funds disability services and reports clearly on whether things are improving.

We also want fair opportunities at work and stronger protection against unfair treatment when people need insurance.

How will we know if the new law is working?

We should be able to answer yes to these questions:

Can a child get the support they need when they need it?

Can a family know what service they will get, when they will get it and what happens if it is not provided?

Does Government know enough to plan the services people need?

Can a young person leave school and move into further education, training or work without falling between services?

Can adults with Down syndrome have meaningful jobs and opportunities?

Can people rely on transport to get to college, work, services and activities?

Can people have more choice about where and how they live?

Can families plan for the future without having to wait for a crisis?

And when Government makes a promise in law, does it make sure that promise is kept?

This is what Heard. Valued. Included should mean in everyday life.

The Disability Act should help make the UNCRPD part of everyday life.

If you have feedback please submit via the form here.