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Policy

AsIAm Policy Annual Report 2023

Since AsIAm was founded in 2014, we have been leading advocates for the rights of the Autism community in Ireland. We campaign to make sure national policy and legislation are inclusive, and we work with the media to highlight issues and raise public awareness of the barriers facing Autistic people. We also represent the Autism community on various committees, and highlight the Autism community's concerns across different events and engagements.

Part of this work involves contributing to important government policy submissions, creating reports, and leading campaigns which aim to change attitudes and raise people’s understanding of Autism.

Policies

Policy Explainer

All our policy work is guided by the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). It sets out what countries need to do to ensure that people with disabilities (including Autistic people) can fully and equally access their human rights.

The UNCRPD highlights the importance of lived experience and marks a paradigm shift in society’s understanding of disability and in attitudes towards disabled people. Countries who have signed the Convention must therefore consult with and involve disabled people and their representative organisations, including AsIAm and other organisations which represent the community, when developing laws and policies that impact the lives of disabled people.

You can find the link to AsIAm’s Explainer on the UNCRPD here: United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)

Key Issues

The scope covered by our Policy team in advocating for the rights of the Autistic community is diverse and wide-ranging. While all the work we do is crucial to our goal of transforming Irish society, there are some projects that have heightened significance at this time. These issues have been highlighted in this section.

A National Autism Strategy for Our Community

Drafting and passing a National Autism Strategy into law is AsIAm’s foremost campaign. Whilst many laws have sought to improve Autistic people’s lives in recent years, there is no statutory instrument which specifically focuses on Autism.

AsIAm’s vision for a National Autism Strategy includes adjusted and enhanced access to public services, nationwide training for families, businesses and professionals who work with Autistic people and crucially, empowering Autistic individuals by supporting their full participation all aspects of Irish society.

All of our work ties into our overall push to implement a National Autism Strategy that seeks to meaningfully include and proactively involve Autistic people and our wider Autism community across Ireland.We successfully lobbied several political parties to include a manifesto pledge to pass a National Autism Strategy into law during the 2020 General Election. AsIAm will continue to engage with members of the Oireachtas, both in Government and with Opposition parties and groups, to ensure Autism is prioritised on the 32nd Dáil’s agenda.

You can find out more about AsIAm’s vision for a National Autism Strategy which supports our community to have the Same Chance here.

Inclusive Education – AsIAm Submission to the EPSEN Review

Developing and delivering a truly inclusive education system is one of AsIAm’s core aims.

The Education for Persons with Special Educational Needs (EPSEN) Act came into law in 2004, which set out a comprehensive set of supports for Autistic pupils and families, as well as important mechanisms aimed at supporting Autistic people to vindicate the right to access an ‘appropriate education’.

Almost twenty years later, despite the EPSEN Act being a positive step as it supported more Autistic people to go to school and receive an education that meets their rights under the Irish Constitution, many important provisions within the Act are still not in force. These include:

• Granting Individual Education Plans (IEPs), with regular reviews on how people are supported on a statutory basis.
• Schools’ designations.
• Establishing a formal Special Appeals Board for assessments.

Read our Submission here: Ireland’s National Autism Charity calls for Special Education Reform through Review and Implementation of EPSEN Act

Reports

Oireachtas Joint Committee on Autism Report 2023

The Joint Committee was set up in 2022 following a series of Dáil motions and Seanad debates calling for greater support for Autistic people and calling on the Government to address key issues which affect our community.

The Committee, which was chaired by Senator Micheál Carrigy, included members from across political parties and working groups within both the Dáil and the Seanad. It worked on a cross-party basis with support from across all political parties and groups across the Oireachtas. The Committee held 23 public meetings, including a session in the Seanad where they heard from Autistic self-advocates and family members about their experiences living in Irish society.

For just over one year, the Committee investigated a wide and diverse range of issues which show the breadth, diversity and pervasiveness of barriers that Autistic people and the wider community face. The report was structured around six main themes:

• Disability Services  
• Education  
• Social Protection  
• Employment, Autistic People, Health and Wellbeing  
• Autistic People, Housing and Homelessness

The report made recommendations for how the Government can address these issues to make Irish society work better for the Autistic community.

Read the full report here: Joint Oireachtas Committee on Autism Report (full version)
Read the AsIAm Explainer on the report here: Explainer Joint Committee on Autism Report 2023

Same Chance Report 2023

Every year during World Autism Month in April, AsIAm publishes a Report which provides a snapshot into what life is like for the autistic community in Ireland. The report provides a summary of insights from 1,600 autistic people, parents, family members and carers, who use the AsIAm Autism ID Card when accessing services or interacting with businesses or organisations. The Report covers a range of topics including education, healthcare, housing, life in the community, safety and the cost of living.

The Report’s findings bear some of the stark realities around Autistic people’s experiences living in Irish society. The Report finds that 86% of respondents do not believe they have the same chance in Irish society, 90% do not think the Irish public understands enough about autism and 91% believe that being autistic is a barrier to being accepted and making friends.  

Other findings include:

• 61% don’t believe the education system is inclusive.
• 75% don’t believe the healthcare system is inclusive.
• 68% are on waiting lists to access services.
• 38% believe they have experienced discrimination in the past 12 months.
• 81% report that being autistic makes the cost of living crisis worse.

You can find out more by reading our Same Chance Report for 2023 in full here.
Read the Same Chance Report for 2022 here.

DPO Network

In June 2023, the DPO Network published a consultation report outlining the views and experiences of disabled people living in Ireland. It was based on 672 surveys and 8 focus groups.

The report was created in advance of the Irish Government presenting to the United Nations Committee on their work to implement the Convention on the Rights of Persons with Disabilities (UN CRPD).

The DPO Network is made up of national Disabled People’s Organisations in Ireland:

• AsIAm – Ireland’s Autism Advocacy Organisation
• Disabled Women of Ireland (DWI)  
• Independent Living Movement Ireland (ILMI)  
• Irish Deaf Society (IDS)
• National Platform of Self Advocates

Download the report: DPO Coalition Consultation Report 2023
Access the Irish Sign Language (ISL) translation here.

AsIAm Submissions

AsIAm wants to transform the lives of Autistic people living in Ireland, by making our society a fairer and more equal place and supporting Autistic people to belong, and to feel accepted.  For real change to happen, there must be a shift in the legislative landscape. Government bodies need to incorporate the needs of the Autistic community into all their decision-making.  

As part of our advocacy work, AsIAm sends policy submissions to Government Departments and State Agencies so that the voices of our community are heard on a wide range of issues across Irish society. Submissions are formal advice and recommendations to help ministers or officials make informed policy decisions. The process of preparing a Submission involves collaborating with a wide range of perspectives within the Autism community, including Autistic people and families, and with professionals who work with Autistic people who provide key services, where appropriate. The purpose is to make sure that the barriers faced by Autistic people are identified and that we make recommendations to Government that will support our community to have the same chance.

Current Issues

AsIAm is dedicated to supporting Ireland’s autism community to have the same chance to belong and feel accepted in the community. As part of this, AsIAm continues to campaign on range of issues which promote and advance the rights of Ireland’s Autism community.  

These issues include:

A National Autism Strategy for our Community

AsIAm calls for the Government to introduce a National Autism Strategy for our community, and for the Oireachtas (Dáil and Seanad) to pass this Strategy into law to make it enforceable.

Joint Oireachtas Committee on Autism Final Report

AsIAm calls on the Government to fully implement all 109 recommendations contained in the Joint Oireachtas Committee Final Report.

Education

• Fully implement the Education of Persons with Special Educational Needs (EPSEN) Act 2004, changing the name to the Inclusive Education Act to highlight Government ambitions for transitioning to an inclusive education system.  
• Update the EPSEN Act’s provisions to reflect best practices for inclusive education under the United Nations Convention on the Rights of Persons with Disabilities and the United Nations Convention on the Rights of the Child).
• Reduce class sizes in mainstream schools to bring into line with the EU average.
• Increase Special Needs Assistants(SNAs) and Special Education Teachers(SETs) numbers.
• Regulate how Codes of Behaviour, Suspensions and Expulsions, and Seclusion and Restraint are used to manage Autistic children in Autism classes and Special Schools, and ensure that practices meet the full support needs of Autistic children.
• Legislate for Individual Education Plans, including a right to full educational assessments, to be provided for children with additional education support needs.
• Expand Children’s Disability Network Teams so that more Autistic children can be assessed for their needs and be supported.

Social Protection

AsIAm have been campaigning around several issues related to social protection, in which many in our community rely on as part of their income, including:

• Engaging with the Department of Social Protection on proposed changes to Disability Payments set out in the Green Paper.
• Raise the age in which families can receive Domiciliary Care Allowance for their child from 16 to 18.
• Improve employment supports for Autistic people, including access to reasonable accommodations, staff training and inclusive hiring practices.
• Introducing a Cost of Disability payment which addresses the additional costs of being Autistic or Disabled, and give community members an adequate income to live on.
• Changing the practices around disability assessments and applications for social welfare payments to make the more accessible and inclusive for Autistic people and community members.

Healthcare

AsIAm have been campaigning around several issues related to healthcare, including:

• Ensuring that all healthcare services are accessible to Autistic people and meet our community’s needs.
• Ensuring that Autistic people have timely access to disability services and supports.
• Ensuring that Autistic adults have a pathway to access autism assessments within the public system.

Employment

AsIAm advocates on several issues which aim to tackle the very high rates of unemployment and underemployment within our community, including:

• Ensuring that all employment supports are accessible to Autistic people and the wider community.
• Ensuring that organisations across the public sector recruit and retain autistic people as part of wider recruitment targets for disabled people.
• Ensuring that autistic people are more supported at work, such as with disclosing their difference or disability, accessing reasonable accommodations and in-person supports.
• Promoting opportunities for self-employment and entrepreneurship.
• Increasing support for work, work experience, recruitment and retention and return-to-work programmes for autistic people.
• Greater investment into providing Autism Understanding and Disability Equality training for organisations across the public and private sectors.

Autistic People, Health and Wellbeing

• How autistic people have worse physical and mental health outcomes compared to neurotypical or non-autistic people.
• Co-occurring differences or disabilities that some autistic people experience.
• Barriers to accessing healthcare for autistic people.
• Barriers around referrals and being accepted to Child and Adolescent Mental Health Services that autistic children experience.
• Barriers to accessing mental health supports for autistic adults.  
• Ensuring staff are trained around autism and have the cultural competence to support autistic people seeking access to health services.
• Co-occurring differences or disabilities that some autistic people experience.
• Barriers to accessing healthcare for autistic people.
• Barriers around referrals and being accepted to Child and Adolescent Mental Health Services that autistic children experience.
• Barriers to accessing mental health supports for autistic adults.
• Ensuring staff are trained around autism and have the cultural competence to support autistic people seeking access to health services.

Housing

• How Autistic people can often face additional barriers to accessing housing.
• Barriers autistic people and families face in accessing housing support.
• How autistic people can have a greater risk of experiencing homelessness.
• Issues autistic adults experience in accessing social and affordable housing and navigating the systems local authorities have in place.
• Ensuring that housing is accessible to autistic people and built to Universal Design principles.  
• Ensuring that the Built Environment and Public Spaces, including public buildings, are accessible to autistic people and the wider community.

Research

AsIAm takes part in research projects and actively works on developing good practice in this area. In this section you will find the latest data on Autism from both Ireland and internationally. If you have queries on research you can contact our Senior Policy Officer, Adrian Carroll at adrian@asiam.ie

Explainers

Explainer: Early Intervention Classes for Autistic Children Towards a Coherent, Inclusive System

Early Intervention Classes for Autistic Children: Towards a coherent, inclusive system is a report that was published earlier this week by the Inspectorate from the Department of Education. The report published on July 8th outlines the findings of inspections conducted across 15 early intervention classes for Autistic pre-school children between September and December 2023. Early Intervention Classes were started in 2006 and exist within mainstream primary schools and special schools, they established by the National Council for Special Education (NCSE) in response to the identified need of the community. The report shows the findings of these inspections as well as some recommendations to improve access to the pre-school for Autistic children. To be eligible for an Early Intervention Class, a child must have an Autism diagnosis. Their diagnostic report does not have to state that the child has ‘complex or severe learning needs requiring the support of a special class setting’.  For the academic year 2023/24, there were 157 early intervention classes with 13 of those opening that year, and 7 becoming of school-age special classes. Once an early intervention class is assigned, the school receives an additional teacher as well as 2 additional Special Needs Assistants. The classes are supposed to provide a range of appropriate educational experiences and interventions to Autistic children before they start in primary education. If a child cannot access a place in an early intervention class, they are provided with a Home Tuition Grant which pays for a tutor for ten hours per week to visit the home or to pay for a pre-school place in a privately operated Early Learning and Care setting.58 children were in receipt of the grant for ten hours of tuition per week, 610 children were in receipt of this grant for 20 hours per week.

Read the full report here.

Explainer: Oireachtas Joint Committee on Autism Report

On Wednesday 14th June 2023, the Joint Oireachtas Committee on Autism published its final report into its work, which was launched in the AV Room in Leinster House.  

The Committee was set up in 2022 following a series of Dáil motions and Seanad debates calling for greater support for autistic people and calling on Government to address issues such as delays in Assessment of Need, and to provide greater access to school places for autistic people who experience barriers to accessing an appropriate education in their local area. It also follows a series of bills, including those introduced by Former Minister for Health, TD and Senator James Reilly, and more recently by Independent TD Sean Canney and by Aodhán Ó Riordán and the Labour Party, all aiming to legislate for a national Autism Strategy and for improved access to services which support autistic people and families.  

The Committee, which ran for just over one year from April 2022 to June 2023, set out to investigate the barriers that autistic people and the wider community are facing when seeking access to services and supports in a wide range of areas, including education, employment, disability services, housing and the built environment, and health, among many others.

The Committee, which was chaired by Senator Micheál Carrigy of Fine Gael, included members from across political parties and working groups within both the Dáil and the Seanad, and worked on a cross-party basis with support from across all political parties and groups across the Oireachtas. The Committee held 23 public meetings over the past year, including a session in the Seanad in March where they just heard from autistic self-advocates and family members and their experiences living in Irish society.

They also heard the testimonies of autistic people, family members, academics, service providers, professionals and their representative bodies, officials representing the trade union movement, and policymakers such as Government ministers and senior civil servants, including officials working in Government departments and State agencies.  

As Committee Cathaoirleach (Chairperson) Senator Micheál Carrigy noted in the Foreword of the Report:

“The Committee was privileged to hear directly from autistic self-advocates and the families of young autistic people. On behalf of Committee members, we were moved by the honesty of the autistic community and their families as they shared their personal stories. We heard of the barriers that are faced by autistic people as they try to access the services and supports to which they are entitled and which they deserve. We heard of the struggles of autistic people who are confronted by a society which has for too long failed to consider their needs and has not facilitated their full participation. While the Committee is extremely grateful to these advocates, we are also disappointed that they have been forced to share details of their private lives and the challenges they experience with the public. The Committee urges the Government to adopt this report and to implement its recommendations.”  

The Report’s findings and recommendations have been informed by the experiences of witnesses who appeared before and who wrote to the Committee with their submissions – from these testimonies, some overarching themes emerged. The Committee stressed the need for more resources for our public services to address both barriers to accessing everyday services such as school places, assessment of needs and post-assessment supports, to address staffing issues identified within the public and community and voluntary sectors who work with autistic people and families. It also called for more support from the Government and State agencies to address negative public attitudes and barriers that autistic people, children and adults alike, face right across Irish society, including in areas such as access to employment, education, housing, and social protection.  

The Committee was also struck by the compelling advocacy of autistic people and community members who were witnesses and who sent written submissions. They found that many within the autistic community felt consistently let down by the State over what many autistic people and families perceive to be the absence and inadequacy of supports. In hearing this testimony, the Committee found that many autistic people and families were justified in having reservations about the State’s capacity to ensure that public services would improve to address the shortfalls in supports for the community. They also found that to remedy this sense of malaise and the lack of trust felt among many autistic people and the wider community, the State needed to show the autistic community that any changes that were happening would deliver tangible and transformative results to help them to feel more confident about being supported and more included in all aspects of Irish society.  

The Committee addressed the reasons behind these sentiments, stating that: “the autistic community told the Committee about the lack of understanding of autism and the inaccessibility of services, including those which are adequately resourced. It is essential that these services are designed with these neurotypes (Editor’s note: neurodevelopmental difference, disability or way of thinking) in mind and that services that directly impact the lives of autistic people are designed in collaboration with the community.”

Key issues highlighted by the Joint Oireachtas Committee on Autism

The Oireachtas Committee’s Report covered a wide and diverse range of issues which show the breadth, diversity and pervasiveness of barriers that autistic people and the wider community face, structured around six main themes.  

These themes include:  

• Disability Services  
• Education  
• Social Protection  
• Employment, Autistic People, Health and Wellbeing  
• Autistic People, Housing and Homelessness

Some of the key issues under these themes addressed by the Autism Committee in this Report include:

Disability Services
• the access and provision of disability services and adult supports to support members of the autistic community both from a service provision and administrative perspective.  

• issues around supporting autistic adults seeking a diagnosis, and around access to post-diagnostic or peer support groups.  

Education
• barriers to accessing education, ranging to accessing school places to individual supports
• reforming our education system to meet our obligations to make our schools more inclusive for all autistic students
• planning for longer term transitions towards a more inclusive education system  
• managing transitions from school to further and higher education, apprenticeships or employment.
• access to Augmentative and Alternative Communication and different modes of communication which support autistic people.

Social Protection
• barriers to accessing social protection for both autistic people and families, including meeting the additional costs of living as an autistic or disabled person.  
• whether existing social protection payments are enough to meet people’s needs, both autistic people and their families.  
• poverty traps which can arise around accessing social protection,  
• issues with accessing grants and supports from the State.

Employment
• Barriers that autistic people experience to accessing employment in the open labour market.  
• Government incentives for employers for recruiting and keeping autistic people in their company or organisation.
• Supporting autistic people in the workplace, such as disclosing their difference or disability, accessing reasonable accommodations and investigating potential models for in-person supports.
• Support around developing self-advocacy, life skills, and navigating the workplace.  
• Fostering inclusive workplace cultures and addressing negative perceptions and stereotypes which impact autistic people in the workplace.
• Promoting opportunities for self-employment and entrepreneurship.
• Including autistic people as part of public sector recruitment targets for disabled people.
Promoting work, work experience, recruitment and retention and return-to-work programmes for autistic people.  

Autistic People, Health and Wellbeing
• How autistic people have worse physical and mental health outcomes compared to neurotypical or non-autistic people.
• Co-occurring differences or disabilities that some autistic people experience.  
• Barriers to accessing healthcare for autistic people.  
• Barriers around referrals and being accepted to Child and Adolescent Mental Health Services that autistic children experience.
• Barriers to accessing mental health supports for autistic adults.
• Ensuring staff are trained around autism and have the cultural competence to support autistic people seeking access to health services.

Autistic People, Housing and Homelessness
• How autistic people face barriers to accessing housing.
• Barriers autistic people and families face in accessing housing support.  
• How autistic people can have a greater risk of experiencing homelessness.
• Issues autistic adults experience in accessing social and affordable housing and navigating the systems local authorities have in place.
• Ensuring that housing is accessible to autistic people and built to Universal Design principles.
• Ensuring that the Built Environment and Public Spaces, including public buildings, are accessible to autistic people and the wider community.

Recommendations

Here are some of the measures that the Joint Oireachtas Committee on Autism recommended that the Government should take to support autistic people to have the same chance to participate and be accepted and included – the full list of recommendations is included in the Report, a link to which you can find below on the bottom of this page or on the Oireachtas website:

• Enact legislation which requires the State to publish an autism strategy every three years. establish a committee or monitoring group featuring autistic people to participate in drafting and monitoring the strategy and require the Minister with responsibility for disability to address both the Dáil and the Seanad every year to provide an update regarding its progress.

• Run a national acceptance campaign which supports autistic people to participate and be included in all aspects of social and cultural life, including specific campaigns supporting autistic people in areas such as education, healthcare and employment.

• Ensure that the needs of autistic people are considered with designing all public services and include the autistic community when designing autism-specific services.

• Ratify the Optional Protocol of the United Nations on the Rights of Persons with Disabilities.

• Set up a ‘One Stop Shop’ programme where autistic people or people who self-identify as autistic can access information and to support them to access any services or supports they need.

• Recognise the work of autism groups who support autistic people and families by setting up a funding stream to support these groups in their work and for more autism groups and autistic led groups to be set up to support autistic people across communities in Ireland.

• Develop and enforce guidelines to ensure that interventions provided to autistic people and disabled people are evidence based and rights based.

• Introduce a Cost of Disability payment which is not means tested for autistic people and disabled people who have higher costs of living because of their difference or disability.

• Benchmark the rate of Disability Allowance and other social protection payments to ensure that autistic people and families who rely on income support from the State have an adequate standard of living.

• Increase the income disregard for the Disability Allowance and Carers Allowance to consider the costs of living with a disability.  

• Initiate a review of the application processes and their transparency to minimise the rejection of applications for disability supports and care supports.

• Develop a long-term plan for the State to provide a high-quality public employment service directly to autistic people and disabled people to ensure that employment services are equally available to all disabled people.

• Work with the Department of Health to amend the Disability Act 2005 in tandem with the Education for Persons with Special Educational Needs (EPSEN) Act 2004 and include a right to services as well as a right to Assessment of Need.

• Liaise with the Department of Health to increase the number of places in third-level courses in occupational therapy, speech and language therapy, physiotherapy, psychology, social work and nursing and work to match these numbers with clinical placements.

• Establish a State-run public employment service that builds on the good practice in the field of disability employment and which links autistic people to employers and offers support, guidance and information as well as tailored support services for participating employers.

• Amalgamate and streamline workplace support grants and the Reasonable Accommodation Fund under one fund which employers may draw down for the purposes of accommodating an autistic or disabled employee or prospective employee.

• Introduce mandatory autism training for all health and social care workers in the Health Service Executive and in Section 38 and Section 39 organisations who provide services on behalf of the Health Service Executive.

• Ensure that understanding autism training is a component in all higher education courses relative to health and social care, including medicine, nursing, dentistry, occupational therapy, speech and language therapy, physiotherapy, social work and psychology.

• Formulate guidelines for autism-friendly service design and built environment design within health services, including general practice, physiotherapy, dentistry and mental health services.
Initiate an independent review of CAMHS (Child and Adolescent Mental Health Services) practices in respect of service provision to autistic children and investigate reports of discrimination against autistic children referred to CAMHS.

• Develop clinical guidelines – along the lines of the National Institute for Health and Care Excellence Guidelines in the United Kingdom – for undertaking an autism assessment and ensure that they are adhered to by professionals within the public health sector and the private health sector.

• Liaise with the Department of Education and adopt an approach which integrates the School Inclusion Model and the Children’s Disability Network Team model to ensure that in-school therapies are available along with community-based services for autistic people.

• Review the application processes for social housing and other housing supports to ensure that they are accessible to autistic people and disabled people.  

• Ensure that autism is regarded as a sensory disability by all Local Authorities for the purposes of accessing prioritised social housing provision.  

• Provide adequate grants to allow for sensory rooms to be added to homes and the sensory-proofing of homes for autistic people.

• Recruit a designated Disability Officer in every Local Authority to advise autistic people and families on accessing supports and assist them to complete the application process, where needed.

What does AsIAm think of the Oireachtas Autism Committee Report?

AsIAm warmly welcomes the Oireachtas Autism Committee Report and agrees with all its findings – the Report is wide-ranging, thorough and comprehensive and its contents largely reflect the diversity of views and experiences of autistic people and the wider autism community. We also welcome that the Committee listened and took on board the views of autistic self-advocates and gave them equal weight to those of professionals, representative bodies, family carers, valuing expertise across a wide range of fields. This shows the value that lived experience can bring to policymaking and that the mantra ‘nothing about us, without us’ permeated through many aspects of the Committee’s work. We also welcome that the Committee also considered the views of autistic women and girls, autistic members of the LGBTQIA+ community, autistic people with co-occurring disabilities, and non-speaking autistic people. Including these voices is a vital part of making sure that recommendations have the desired outcome and that disabled people and other underrepresented groups can also benefit from any changes which occur from this Report and allow these communities to have the same opportunity to vindicate their rights. In summary, the Committee’s findings set an ambitious vision for including autistic people and disabled across many strands of Irish society, and for their living experiences to be given equal weight to academic and professional expertise and to be a core part of making and delivering policies which affect their lives.    

AsIAm calls on the Government to act on the Report’s recommendations, and to implement the actions recommended by the Committee within the framework of a National Autism Strategy.

Speaking on the launch of the Oireachtas Joint Committee Report, our CEO Adam Harris said that:  

“We know all too well the impact that many similar reports and initiatives not being implemented have on autistic people and the community. When progressive and forward-thinking recommendations on paper do not translate to the much-needed change on the ground that many autistic people and families have been calling for, this leads to a situation where many families feel let down too often by the State and to an understandable loss of trust amongst our community. Isolation, social exclusion, and lack of understanding, support or lack of opportunities should not be accepted as inevitable aspects of being autistic or raising an autistic person in modern Ireland. This is why we are calling on the Government to act on the Joint Oireachtas Committee on Autism’s recommendations so that autistic people and our community have the same chance to belong, feel included and to be accepted as a part of the rich fabric of Irish society. We urge the Government to particularly act on the specific recommendation to create a legislative mandate that obliges the Government, and the Department of Children, Equality, Disability, Integration and Youth, to develop and maintain a national autism strategy in partnership with autistic people and the wider autism community.”  

Over the coming weeks, AsIAm will be engaging with stakeholders on key issues which have been highlighted in this Report.  

Later this summer, AsIAm will launch a community-led campaign to ensure that Government accepts and moves swiftly on the Report’s findings and recommendations and brings legislation to put a National Autism Strategy on a statutory footing to the Oireachtas during the next term.  

Finally, we would like to thank Cathaoirleach Senator Micheál Carrigy and all the members of the Joint Oireachtas Committee on Autism, their parliamentary staff and parties, all the Oireachtas staff who supported their work, and to everyone who sent submissions and who gave testimonies and who engaged on these issues for all their hard work during the lifespan of this vital Committee for our community. We look forward to further engagement on these issues over the coming months ahead.    

Link to the Joint Oireachtas Committee on Autism Report (full version)

AsIAm Explainer Videos Provide Support to Community

AsIAm, Ireland’s National Autism Charity, has released a series of video guides to help community members across various subjects. Our organization wants to see autistic people get the same chance in education, employment and community participation. While a number of financial and educational supports are available to support autistic people, it is easy to become overwhelmed by the amount of information out there. Our videos aim to provide short, easy-to-understand guides for understanding these supports, their guidelines and how to apply for them.

Educational Supports:
Providing a suitable and inclusive school environment remains a challenge for autistic children. However, a number of barriers may prevent this, whether they are academic, environmental or social. Several supports exist to accommodate these difficulties which are explained below.

Financial Supports:
Autistic people of all ages and support needs may require various types of financial assistance throughout their lives, but can be difficult to apply for. For instance, parents of children with higher support needs may avail of Domiciliary Care Allowance to assist them but the application for this support is over 20 pages long including a series of personal questions about the child’s support needs and medical report to be filled out by a GP. Once a child reaches 16, they are no longer eligible for DCA and must instead apply for Disability Allowance, a support with a similarly complex application form. Guides to both supports and how to apply are available below.

Disability Participation and Consultation Network:

Lobbying

We work with every party and group in the Oireachtas, both in Government and in Opposition, to advocate on behalf of policies that meet the needs of Ireland’s autism community, and address the barriers to access and inclusion that Autistic people and our wider community experience all across Irish society. Our team includes members of various political affiliations and opinions. We hope this attention to diversity is reflective of our equally diverse autism community.

What do we lobby for?

Our engagement with elected representatives is informed by the need for autistic people’s full inclusion and participation in Irish society.

We meet with members of the Dáil and Seanad to advocate to advance the rights of Autistic people and our wider community across a range of different policy areas, including education, healthcare, employment, social protection and justice.

All of this feeds into our broader campaign for a National Autism Strategy which is supported by underpinning legislation. This will enable different Government Departments to work together more effectively in meeting autistic people’s needs across the country. It will also recognise autism as a whole-of-life condition and ensure that public bodies are required by law to support autistic people’s inclusion.

What is our relationship with the Government?

Along with self-advocates and other disability organisations, we sit on the HSE’s Autism Programme Board and liaise with a wide range of Government Departments and State Agencies to make sure they understand autistic people’s experiences better.

We have no direct line to any Cabinet Ministers and do not sit on any Government Department’s directorates.

Government bodies do provide some funding towards our projects, such as Pobal’s Scheme to Support National Organisations (SSNO) Grant, and from the HSE and the Department of Children, Equality, Disability, Integration and Youth for some of our initiatives, including the Autism Information Line. However, these funds are not statutory, nor do they come from a political decision or from a relationship with any Government Minister. AsIAm, along with other charities and community organisations, applies each year for Grant and we are judged solely on our achievements to date and the scope of our vision for future activities.

What is our relationship with TDs, Senators, and the Oireachtas?

AsIAm does not and never will favour one politician or political party over another in any of our policy or advocacy work.

We engage with elected representatives from across all political parties and groups in the Oireachtas to highlight issues which affect our community. Autism is a whole-of-life difference or disability that is experienced by individuals and families across Irish society, regardless of their background, ethnicity, faith, gender identity or sexuality.

AsIAm takes a cross-party, consensus-driven approach in our policy and advocacy work. We will work with any and all elected representatives to achieve the goal of ensure that every Autistic person has the same chance to belong, feel accepted and be included across every aspect of Irish society.

Equally, we think that every politician and party should be held to account over the decisions they make that will impact citizens’ lives. We will always push for greater community involvement, accountability and transparency throughout the decision-making process.

All of our lobbying records can be viewed here at the here at the Register of Lobbying Returns’ website.

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