Joint Committee on Disability Matters díospóireacht -
Thursday, 4 Nov 2021

Aligning Disability Services with the UN Convention on the Rights of Persons with Disabilities: Discussion (Resumed)

Vice Chairman

Apologies have been received from Deputy Phelan. The purpose of today's meeting is to discuss aligning disability services with the UN Convention on Rights of Persons with Disabilities, UNCRPD, in consideration of autism and intellectual disability. On behalf of the committee, I would like to extend a warm welcome to Mr. Tom McLoughlin, to Ms Gillian Kearns and Ms Marja-Kristina Akinsha of Autistic Paddies and to Ms Jean Mullan and Mr. David Doyle and to Mr. Adam Harris, CEO of AsIAm.

I must remind members that they are only allowed to participate in this meeting if they are physically located in the Leinster House complex. If members are joining this meeting remotely, I ask them to confirm they are on the grounds of the Leinster House campus prior to making a contribution to the meeting. For anyone watching this meeting online, the witnesses are accessing the meeting remotely. Due to these unprecedented circumstances I ask that everyone bear with us should any technical issues arise.

Before we commence formal proceedings I must begin with some formalities and advise our witnesses on the matter of privilege. You are directed that only evidence connected with the subject matter of these proceedings is to be given. You are asked to respect the parliamentary practice to the effect that where possible you should not criticise or make charges against any person, persons or entity by name, or in such a way as to make him, her or it identifiable. I wish to advise the witnesses giving evidence from a location outside of the parliamentary precincts to note that the constitutional protections afforded to witnesses attending to give evidence before committees may not extend to them. No clear guidance can be given on whether, or the extent to which the evidence given is covered by absolute privilege of a statutory nature. Persons giving evidence from another jurisdiction should also be mindful of its domestic statutory regime. If you are directed by the committee to cease giving evidence in relation to a particular matter, you must respect that direction.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise, or make charges against a person outside the Houses, or an official either by name or in such a way as to make him or her identifiable.

I now call Mr. Tom McLoughlin to make his opening remarks.

Mr. Tom McLoughlin

Good morning. Members have our written submission so I am not going to go through it in any detail, but it will form the background to what I am going to say. My wife threw me under the bus, so I will be the one speaking today instead of her. We have two kids, one with a profound intellectual disability and one with a much milder one. Therefore we are blessed with a wide array of experience in relation to that. Our oldest is 31 years of age and our youngest is 23 years of age, so it has dominated our lives for that period. All of that has required high levels of advocacy as parents for our kids.

Having said that, I will split our comments into the different life stages. The first thing, by way of contrast, would be to look at the educational system. With the educational system there is something tangible, there is something which is decipherable, there is a degree of commonality and there is a kind of an infrastructure. Currently our two sons are in the adult stage, and the central part of it is that there is a vast array of extremely difficult to decipher services. Even when you manage that, there is an inherent difficulty, or absence, in terms of the infrastructure. We will go through that in a little more detail later.

Looking forward to when we are no longer around, or are no longer capable of helping or caring for our two sons, to date there has been no discussion or no preparation. From that perspective, it has to be the State. This is not a welfare issue but just a simple common sense issue. At the end of the day a service eventually gets delivered, but the issue is how good or bad that service is. There is a great absence in relation to planning for the stage when parents who currently are the primary carers and the primary advocates are no longer able to care for their children. There is very little in the way of inheritance planning and planning for future life.

On the current state, I basically have summarised the aspects in relation to it in points one to ten of the document members have received. First, it is extremely difficult to decipher what is available coming out from educational services. You are coming from something that is tangible, that you can see and understand, and going to an adult service which you expect to include something real and tangible. Yet after 12 plus years, our conclusion is that there is not anything, or much, tangible, or there is a huge gap in physical or organisational infrastructure for adult services. There is a vast array of different service providers. The service providers are operating what is almost like an educational system without a college, without a syllabus and without a training programme, and almost equally there are issues in relation to staffing, etc., for it. There are many different agencies and it can be very difficult to decipher what the different agencies offer. It is probably impossible that any of those agencies can of themselves provide the necessary infrastructure.

Once our sons found placements, I would contrast the physical infrastructure with that of second level. By the way, all of this is financed by the State, so it may have a perception that it is a money issue, but it is not. The reality is that the infrastructure where our younger son of 23 was going, out to an industrial estate in Tallaght, was not and is not fit for purpose. I would say the alternative cost of having that service provided on a third level campus site, for example, would probably be lower for the State. Therefore the physical infrastructure is absent, as far I can see.

I am still trying to figure out the placement content, that is, what our sons do once they are in a placement. Each week we will have a timetable for our son, and the timetable is variable. However, to a huge extent, it has been made up on the hoof. By and large, this is because there is not a syllabus, a training development programme, which is coming from the top and which is capable of being rolled out for all of the different service providers.

Looking at the staffing of the service, in the interest of time I will pick one aspect, which is psychiatric services. Most of the kids, and I will keep calling them kids, in this area have a need for a medical module. The primary issue in relation to that is the availability of psychiatric services. If there is a difficulty with accessing the psychiatric services it basically leads to a multiplicity of problems which will dwarf any expense, etc., in relation to the fact that the psychiatric services are not available up front. By and large, our experience is that when you look at different services, some have them and some do not. They are all funded by the State but a psychiatrist who is working for one organisation cannot cross over and provide psychiatric services for another agency. We have faced this dilemma when talking with the providers for our two sons, which are different agencies. We talk to the same psychiatrist and we know that psychiatrist could do a lot for our younger son, but that psychiatrist cannot provide a service for our younger son because they can only wear the shirt or the jersey of one provider.

The hours are incredible. The best description of the hours is that they are pre-school. It is not 9 a.m. to 5 p.m.; it is nothing like that. For those who are high-dependency there is no evening or weekend service. I am of a certain age, which members can probably guess. I am over 60 years of age, and at this stage I am still the primary social outlet for my two sons, which cannot be pleasant for them. First of all, there needs to be a proper 9 a.m. to 5 p.m. service. My wife has not been able to work for more than 30 years, and it has also impacted on my own employment situation. I need huge amounts of flexibility, so I am self-employed. I do not think any employer could tolerate the amount of time I have to dedicate to my two sons. There is a paradox in the support ratios. If you look at kids as they grow into adults, the support ratios as adults mature, develop and become more independent go up rather than go down, which is its own commentary on the efficiency of how the services are currently structured.

There is at best a haphazard overall governance. I do not think the HSE manages it actively. All of these years we have sought clarity on the amount of funding which is involved. We have a decent idea and we know it is a lot of money in the case of our older son. We know it is not a huge amount of money in the case of our younger. However, I would query whether there is a neutering as such of the parents' involvement because the service providers may be a little bit defensive in relation to it, but the HSE does not volunteer that money as well. We are, therefore, operating in a vacuum in relation to that.

I have included some suggestions in the document. What is the expected outcome? I think that to date, unemployment is not just the norm but the overwhelming outcome, even for people who can provide a decent service or output to society. It is just not working and at the moment there is vast unemployment. I would say it would be more than 90%.

That includes supported employment, community-based schemes, etc. The system is not working. We have itemised a number of different things that could be done for immediate wins. In the early stages, it is more about integrating the adult services into the educational, training and employment world, rather than this nebulous world of individual education plans, which is probably a generous description. There is a need for something far more tangible. If it is measured based on outcomes, the quality of life for our two sons is not good. The only reason that it is somewhat decent is due to us. We are aware that major resources are being thrown at it but there is no overall plan. Without an overall plan, the expected and actual outcomes are terrible.

We are at the stage where we can maybe hope for another ten or so years of being able to be active. To date, there has been no discussion about what the situation regarding advocates and active carers for our sons will be when we are either not around or not capable of providing a service. We should have some plan to put in place. In my work, I provide financial planning advice regarding inheritances and so on. I know this area. We are operating in a vacuum with regard to our two sons. There is nothing that we can advocate for or any independent living infrastructure for when we are no longer around or that will gradually take over. I do not believe that there is any planning to put that in place. We have been left out in the cold.

If members read the rest of the submission, it fleshes this out. I wanted to try to summarise it and give a flavour. They will hear from the other speakers and I will be available to take any questions. I thank the committee.

Ms Gillian Kearns

I am speaking on behalf of a group of autistic adults who came together to highlight areas we feel are crucial to improving the lives of autistic adults and children. We would like to add our experience to give a greater understanding of the current issues faced by the autistic community within a human rights framework. Our previous submission to the joint committee highlighted a range of issues of concern to the autistic community in Ireland. This submission puts particular focus on three urgent human rights issues experienced by autistic people in Irish care and educational settings. These issues are behavioural interventionist therapies, such as applied behaviour analysis, ABA, the use of isolation, seclusion and restraint; and the provision of augmented alternative communication, AAC. We would like to speak about the lack of diagnostic and post-diagnostic service provision for autistic adults in Ireland.

The use of behavioural interventionist therapies to "train" autistic people to appear indistinguishable from their peers contravenes the autistic person's right to their own agency and identity, which we argue is in contravention of Articles 3(8) and 17 of the UN Convention on the Rights of Persons with Disabilities, UNCRPD. Compliance training in the form of ABA and related behavioural therapies undermine the safety and well-being of autistic young people and leave them vulnerable to abuse and significant mental health difficulties in later life, including a more than 85% increased risk of complex PTSD. The goals of behavioural interventionist training are not determined by or with the disabled people they are used on, as is required by the UNCRPD. The premise of ABA is similar to that of so-called gay conversion therapies and historically has links to that project. A growing body of research has established that these interventions are ineffective at extinguishing challenging behaviours and are violating the rights of autistic young people, causing significant long-lasting damage to their mental health and quality of life while offering no long-term improvements.

As autistic adults who are aware of the huge toll taken by masking, which includes the likelihood of increased suicidal ideation, we are concerned about the rise in use of these interventions throughout Ireland and call for an urgent investigation into these practices from a human rights perspective. Parents and carers in need of support are turning to this multi-billion euro business model in the hopes of helping their autistic loved ones, without being made aware of the inherent dangers of forcing people to hide their authentic autistic identities.

Isolation, seclusion and restraint of disabled people are employed by schools and care services across Ireland as standard practice and can cause extreme trauma and have long-term mental health impacts. These practices are disproportionately used against intellectually disabled, neurodivergent and ethnic minority children, and pose a risk to their right to equal access to education as articulated under Article 24 of the UNCRPD. Currently, we have no transparency on the prevalence of these practices in Ireland nor are the institutions using them under any obligation to report instances to an independent monitoring body. We believe that these practices, when viewed in the context of the harm they cause and conscious of their disproportionate use on disabled people, are not compliant with Articles 14 and 15 of the UNCRPD. We urge the committee to examine this issue and to encourage the Department of Education to introduce similar reporting and oversight on the use of isolation, seclusion and restraint in schools as that introduced for the use of reduced timetables in September of this year. We believe that the current lack of monitoring of these practices in schools and care settings could potentially constitute a failure to fully realise Article 16(3) of the UNCRPD.

Regrettably, the express goal of most therapies offered to autistic people in Ireland is to make us indistinguishable from our peers. This often leads to an emphasis on using verbal speech and discouragement of any communication which is viewed as not typical, denying autistic people agency. Acknowledging how fundamental communication is to our lives, in conjunction with the specific importance of non-verbal speech in autistic culture, we contend that prioritisation of verbal speech over non-verbal speech is not in alignment with the definitions and general principles of the convention, which specifically refer to augmentative and alternative communication modes.

We emphasise the need for a review into diagnostic and post-diagnostic service provision for autistic adults. The majority of autistic adults have no access to autism diagnosis and post-diagnostic support. Autistic people may have been diagnosed with another condition, without knowing they are autistic, which may be the core issue. Therefore, we call for routine autism screening of adults with mental health or learning disabilities, as they would benefit from more tailored support. The lack of, or very limited, public pathways to autistic diagnosis unfairly impacts those who cannot afford to pay privately, disproportionately those from minority groupings. Autistic people have a higher incidence of mental health conditions, self-harm and suicidality, which demonstrates that there is an urgent need for autism treatment pathways in mental health services.

We request that autistic adults are granted access to post-diagnostic support and treatment from specialists, advisers and counsellors with up-to-date knowledge on autism, autistic-informed approaches and on how to support mentally unwell autistics. Health services need to have consideration of conditions commonly co-occurring with autism, and provide appropriate screening, diagnosis and support. To bring Ireland in line with the UNCRPD, personal assistance services need to be put on a statutory basis and to be made available based on need and not diagnosis, including to autistic adults. Article 6 of the UNCRPD recognises the multiple forms of discrimination experienced by disabled women and girls. In order for Article 6 to be upheld, measures must be taken to ensure that women and girls have full and equal access to all rights, which includes equal access to correct diagnosis and support.

We emphasise that when planning and providing services to disabled people, it is essential to consider what we are trying to achieve and why, and whether there are any ethical implications.

It is crucial to work with autistic people and their representative organisations to develop ways to support autistic people that are positive and effective and which do not enforce neurotypicality or prioritise non-disabled views on the value of disabled lives and choices. Identifying and measuring targets that are meaningful and endorsed by the autistic community is essential both to prevent harmful interventions which oppose self and societal acceptance and to ensure that all therapies are aligned with the provisions and the vision of the UNCRPD.

Ms Jean Mullan

I am grateful for this opportunity to highlight some of the challenges facing people with autism and intellectual disabilities and their families living in this remote rural area in north-west Connemara. I grew up in Scotland, spent some years in the USA and came to live in Ireland with my husband and two young daughters in 1993. After a long engagement with uninformed and unsympathetic professionals, our elder daughter was finally diagnosed with Asperger’s syndrome, aged 13 years, in 2002. Our daughter is now 32 years old, so we have had many years experience of living as a family trying to support her as she makes her way through life. In addition, I got the opportunity of studying for the LLM in international and comparative disability law and policy at National University of Ireland, NUI, Galway in 2012. I am a director of FORUM Connemara CLG, our local community development company, a member of Galway Disability Forum and the chair of Lámh Linn, a support group for people with disabilities and their families living in our area. It is very exciting to be part of this discussion aimed at moving from the status quo towards compliance with the UNCRPD which aims to "promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities".

In my submission I have outlined several case studies describing the challenges faced by people with autism and intellectual disabilities and their families living in north-west Connemara. The overall picture, as has been said, highlights a lack of services with a high turnover of professionals, long waiting times and a lack of supports, such as childcare and respite. Although all people with disabilities share similar difficulties in accessing appropriate living facilities, healthcare and other support services, people living in rural areas far from Dublin face the added challenge of travelling long distances in order to access the services and support they need. This adds greatly to the stress of supporting a family member with an intellectual disability and is contrary to Article 25(c) of the Convention on the Rights of Persons with Disabilities, CRPD, Article 25(c), relating to health, which requires that services be provided "as close as possible to people’s own communities".

One of the universal problems that people with autism and intellectual disabilities face is social isolation. They are kept separate in school, services and living arrangements. They have no friends and colleagues. There are many obstacles which often result in them being excluded from educational, employment, social and cultural activities. This is obviously detrimental to their health and well-being. I will give some examples from my community which demonstrate the lack of alignment with the provisions laid down in the UNCRPD. A widowed mother of two boys aged 13 years and 14 years, both attending the same school, puts her 14-year-old on the school bus every morning, but because there is no escort available, she has to drive her 13-year-old who has autism to and from school daily. That is a 16-mile round trip. This is contrary to CRPD Article 9 - Accessibility and Article 24 - Education. Ms K, who has Asperger’s syndrome, has been registered with a nationwide employment support service whose remit is to match people with disabilities with employers who will provide "reasonable accommodation" and a suitable job for the person with a disability. The employer gets a wage subsidy and is offered disability awareness training but this is not mandatory and, therefore, is not taken up by the employers. In the only job placement she was offered, the employer had no idea of what Asperger’s syndrome is. This is contrary to CRPD Article 27 - Work and employment.

A vivacious young woman in her 30s with an intellectual disability would love to take part in drama, dance and music activities. However, this is very limited in our area and there is no suitable transport to Galway. This relates to CRPD Article 30 - Participation in cultural life, recreation, leisure and sport and Article 9 - Accessibility. Ms J, a 17-year-old girl with severe learning disabilities, was socially isolated and was struggling to deal with post-school options and to plan her future. She is eligible for disability allowance but her family does not know this or how to apply for it. This is contrary to CRPD Article 21 - Freedom of expression and opinion and access to information. Finally, and most fundamentally, the aim of every person is to be able to live an independent life. Ms R, who is in her 30s and has an intellectual disability, had hoped to be living in an assisted living setting at this stage of her life. Currently, there is no purpose-built accommodation in our area provided by the State for adults with autism or intellectual disability. This would require a team of suitably-trained support workers available 24-7 and access to additional supports and social activities on a regular basis. At present, this role is fulfilled mostly by parents, who obviously become less able and more anxious as they get older. This is contrary to CRPD Article 19 - Living independently and being included in the community.

On a positive note, there have been some excellent programmes delivered at a local level which have addressed some of these issues. Recently, the ability programme delivered in our area by FORUM Connemara put in place a number of initiatives promoting positive pathways into training, education, social activities and work experience for people with disabilities aged 15 to 29 years. This programme achieved impressive outcomes but ended after 36 months.

I thank the committee for the opportunity to present a picture of some of the challenges faced by people with autism and intellectual disabilities and their families living in north-west Connemara. I urge the committee to take the necessary steps to ensure that we reach compliance with the provisions of the UNCRPD as soon as possible and create the socially inclusive country we all deserve.

Mr. David Doyle

I thank the committee for inviting me to the meeting today. My submission has two elements. One is that I recommend to the committee that consideration be given to transferring the HSE disability unit, including its budget allocation, disability staff and accommodation, to a specialised Department for disability. The responsibility would then lie with the Minister for disability. Second, I propose the statutory provision of a guardian-carers liaison office for families, including the person with disabilities within that newly-formed Department for disability. This office would be the voice for them in planning services, highlighting gaps in services and would be a member of the annual financial allocation team. The office would engage with families, guardians and carers, solicit their views and expertise and advocate at the highest level.

I am the proud father of a 28-year-old young lady with a diagnosis of autism spectrum disorder, ASD, moderate learning disability and complex mental health, who from an early age presented with severe challenges in behaviour that required multiple staff and family to support her. I am a long-standing advocate that when a child or adult is diagnosed with autism, it is a diagnosis for the whole family. It impacts the family directly. My submission stems from having over 21 years' experience of being self-employed in a commercial, unrelated profession to now having 22 years' experience of working on the ground at senior management level within the disability sector.

I am delighted to be able to share my personal experiences and to offer two suggestions of alternative pathways for service delivery. Most of all, I hope that, if taken on board, my input will offer hope to families who feel that the disability sector is not catering for their needs at this time.

My recent professional experience has seen me work on the front line and at senior management level. I have sat on numerous consultative forums. Currently, I fill the roles of development officer and complaints officer and I manage an equestrian therapy centre for people with disabilities on behalf of my employers, but my real expertise comes from being a parent of a child with autism and intellectual disabilities. I have travelled and conversed extensively in Europe and North America in trying to understand the world of autism. It was during one of these trips that I recognised the value of equine therapy, especially the horse boy method for children and adults with autism. This led to the establishment by my employers of an equine therapy centre specifically designed for people on the spectrum. However, members should note that this submission is based on my personal viewpoint, expertise, observations and research.

It is important that I acknowledge the hard-working, caring and sometimes frustrated local HSE community healthcare organisation, CHO, disability managers, case managers, multidisciplinary teams and financial and administration staff who, despite highlighting the budgeting and planning shortfalls to the hierarchy of the HSE, receive little hope of ever being able to cater for the disability needs in their respective areas. It is this lack of prioritisation of disability services and a perceived lack of empathy towards children and adults within intellectual disability and autism services at the highest level in the HSE that frustrate families. It is so demeaning to families to have to lobby Oireachtas Members for basic services constantly. Unfortunately for people with disabilities, the voices at the top table when the HSE is allocating yearly budgets to the disabilities sector are either not advocating strongly enough or are not heard. Either way, it is time for change; hence, my submission.

The establishment of the first Minister of State with responsibility for disabilities in 2016 gave a glimmer of hope to the disability sector. Alas, it became clear that, without ministerial and departmental control of services, finances and future planning, disability would remain subservient to the acute sector. Intellectual disability and autism is the one sector under the health remit that can be preplanned. The diagnosis is lifelong. It makes for easy strategic planning of services along the different stages of a person's life.

The publication in 2012 of a report, entitled, Value for Money and Policy Review of Disability Services in Ireland, gave great insight into the sector and what needed to be done. Its vision was:

- Every person with a disability would have access to an income which is sufficient to sustain an acceptable standard of living;

Every person with a disability would, in conformity with their needs and abilities, have access to appropriate care, health, education, employment and training and social services;

Every person with a disability would have access to public spaces, buildings, transport, information, advocacy and other public services and appropriate housing;

Every person with a disability would be supported to enable them, as far as possible, to lead full and independent lives, to participate in work and in society and to maximise their potential; and [especially]

Carers would be acknowledged and supported in their caring role.

The current Minister, following lobbying by service users, families and providers, secured additional funding for the disability sector in 2020, which in itself provides evidence that the HSE is not advocating for disabilities. This additional funding was welcome, but I appealed to the Minister then and I appeal to him now for all new money to be earmarked for the provision of new front-line services, enhanced services, future planning and reducing waiting lists. It should not be used for reducing the current deficits of local CHO offices, as that would be to reward the HSE for years of underfunding the sector and not make inroads into the current difficulties. It is for this reason that I strongly recommend to the committee that consideration be given to transferring the HSE's disability unit, including its budget allocation, disability staff and accommodation, to a specialised department of disability within the Department of Health.

The second element of my submission has to do with the partnership approach. Carers, families and guardians play a major part in service provision. Their efforts usually go unappreciated and unrewarded. This is especially evident in families with an adult with intellectual disabilities or autism. Following the establishment of the HSE, it rapidly abandoned the "enhancing the partnership" policy. It was truly astonishing to witness the uncaring and unempathetic approach by the HSE towards the plight of families. There is still no long-term service plan. More than 1,250 people are supported in a family home where the primary carer is over the age of 70. Four hundred of those carers are over the age of 80. The situation has to change.

I propose the statutory provision of a family-guardian-carers liaison office within the disability department. This office would be the voice for same in planning services and highlighting gaps in services and a member of the annual financial allocation team. The office would engage with families, guardians and carers, solicit their views and expertise and advocate at the highest level.

Vice Chairman

I thank Mr. Doyle for his statement. I call Mr. Harris to make his opening remarks.

Mr. Adam Harris

I thank the committee for the opportunity to present to members on this important topic. I offer my thanks also to the clerk and staff of the committee for all their assistance in advance of this meeting.

AsIAm is a national autism charity. We are an organisation that takes a rights-based, accessibility approach to autism acceptance and inclusion. Approximately half of our team are neurodiverse and we undertake a broad range of work in supporting autistic people, advocating for the rights of our community and engaging with broader Irish society on the steps that can be taken to make communities more inclusive.

We welcome the opportunity to discuss autism services in the context of the UNCRPD. At the outset of the discussion, it might be worth noting some fundamental, structural flaws for autistic people and our families in accessing services that are in full alignment with Ireland's obligations under the convention. The convention deals with rights and rights holders and recognises that disabled people have a right to access the support they need to participate in a society that too often presents barriers to our community. However, Irish systems and services continue to operate on a paternalistic grace and favour charitable model in which the systems often dictate the supports that people are able to access, and autistic people and their families have even less recourse when these systems and services do not respond to their needs or, indeed, fail. Not only that, but while it is deeply regrettable that Ireland was the last country in the EU to ratify the UNCRPD, it remains the case that we do not have a clear timetable for the ratification of the optional protocol. A convention with no mechanism for complaint and resolution for people with disabilities does little to help autistic people whose services are not delivered in a rights-based model.

Our entire approach to disability in this country continues to be rooted in a medical model, not the social model or human rights model set out by the convention. It is often driven and controlled by the interests of large service providers or the HSE's capacity to deliver services, not by the needs of autistic people and their families on the ground.

"Nothing about us without us" is far from a reality when it comes to the design and delivery of autism services, which are often not designed with autistic people, least of all autistic individuals ourselves, in mind. This lack of design goes beyond resources. It deals with the environment and type of service people receive, the staff who provide the service, who may not have an understanding or knowledge of autism, and the self-esteem that is undermined in a model that continues to present autistic people as less capable versions of neurotypical.

Stepping away from these structural realities, what is it like in Ireland to access or attempt to access disability services as an autistic person or family? In AsIAm, we deal with thousands of queries from the community every year, covering a broad range of topics from diagnosis to therapeutic supports and everything in between. The one word that comes to mind in all these categories, and across the entire lifeforce, is "fight". Autistic people and our families have to fight, often until the point of fatigue, from the word go to access the most basic services. In some instances, these supports are specific to autistic people and are provided through disability services but, sadly, even mainstream health services, particularly our mental health services, do not afford parity of access to care for autistic people, despite eight in ten in our community experiencing mental health conditions during the course of our lives and autistic people without an intellectual disability being nine times more likely to die by suicide. This is far from a rights-based approach.

We documented some of these barriers in our recent report Every Child Counts, which examined the experiences of autistic children in accessing HSE services. The realities are bleak. A total of 42% of families had to wait more than two years to access a diagnosis for their child, while 79% were not in receipt of any support from either the early invention team or the school-age team. A further 65% of families were dissatisfied with disability services and just 7% were in receipt of any respite support. The consequences of these barriers are real and can often be devastating for autistic people and our families. It means children experiencing unmet needs and families losing the opportunity to participate fully in the community and often leads to poverty and social exclusion. A study from National University of Ireland Galway, NUIG, showed that families of children on the spectrum experience additional costs of €28,000 per year due to being forced to access private services, leaving work or going part time due to a lack of appropriate supports. This chimes with the experiences of many disabled people and their families, who often experience additional living costs of between €10,000 and €14,000 per year.

Circumstances do not improve when we look at how supports are provided, or usually do not exist, for autistic adults. Adults within our community who do not have their needs recognised or met as a child can usually access an autism diagnosis only privately, typically at a cost of almost €1,000. Autistic adults attending day services often attend services designed not for themselves or autistic people but for people with disabilities in general. The long delays in the commencement of the Assisted Decision Making (Capacity) Act have seen many people continue to have their rights undermined by the so-called Lunacy Regulation (Ireland) Act 1871. Autistic people living at home or independently in the community can often access no formal support structures and, all too often, isolation, poverty, social exclusion, unemployment and mental health crises are a norm for adults within our community.

Just as it is important to recognise that disability rights are not just about services, we should also recognise services are about more than resources. Earlier this year, our organisation argued for a cultural reset in how the HSE and the Department of Health interact with autistic people and our families. The crisis of trust generated by the recent "RTÉ Investigates" programme, coupled with the often adversarial, if not hostile, experience autistic people and families experience while engaging with services, highlights the need for our services to become more person centred and rights based. I echo the need to move away from the behaviours-based model that has done so much damage to autistic people and our families. Put simply, we need services, the HSE and the Government to collaborate, not gatekeep or dictate, and to gain a greater empathy and understanding of the experiences of our community.

To bring about a full alignment between autistic services and the UNCRPD, we recommend the following. We welcome the Government's recent commitment to return to legislation in 12 months' time concerning a national autism strategy. We welcome also the commitment of the Minister of State at the Department of Health, Deputy Rabbitte, to an autism innovation strategy. There is clear political consensus for this strategy, which will serve as an important recognition by the State of the specific needs of autistic people. We need no obstacle to stand in its way. It is vital the HSE progresses public pathways of support for autistic adults to access diagnosis and support but also for autistic people of all ages to access mental health services in a timely manner.

Learning from the experiences of the UK National Health Service, NHS, an obligatory training programme in autism should be rolled out to all staff working in disability and health services. It remains that many staff do not have the training they need to meet meaningfully the needs of autistic service users. We must urgently bring about the revision of our approach to autism and disability within the HSE to move us towards a rights-based model and fully fund the findings of the disability capacity review, which identified that an additional €350 million is required to meet fully the needs of disability services throughout Ireland. Despite the additional funding for disability services set out in the budget, there remains a €230 million shortfall after budget 2022.

Finally, Covid-19 has highlighted for all to see the shortfalls in how we approach disability. Never again can services such as occupational or speech and language therapy be treated as optional extras during a moment of major crisis, where autistic people lost routine, predictability and vital support overnight. We must now use this as an opportunity to question why things have always been done in a certain way, ask whether there is a better way and, critically, listen to the lived experiences of autistic people and their families.

I thank committee members for their time and look forward to their questions.

Vice Chairman

I thank Mr. Harris.

Senator Erin McGreehan

I welcome our guests. It is great to see them all and have them present at the meeting. Every week, I look forward to these committee meetings because we learn so much. We get so many punches to the gut and I am often upset and overwhelmed by how people are forced to live their lives in this country. I thank our guests for being such strong advocates for their loved ones and themselves.

My first question is for Mr. McLoughlin and Mr. Doyle. I was interested in what Mr. Doyle said about the family or guardian liaison office. It goes to what Mr. McLoughlin was saying about the lack of future planning. Our birthdays come around every year and we all get older. In regard to that future planning, what are the blockages in the HSE and other service providers for our guests and their children in regard to planning for the future? This is important. We will not be around for our families forever. Do the blockages relate to resources and capacity or is it just a classic case of it being all right on the night, trying to get as much as possible out of families until they are completely worn out, and we will deal with the matter when it is at crisis point? Unfortunately, that seems to be the case.

What are our guests' thoughts on the models for progressing disability services and improvements in that regard?

Mr. Harris spoke about the hesitancy or failure to move from the medical model to a social or rights-based model. You would think the HSE, of all organisations, would understand the difference between someone being sick and someone needing therapy to empower themselves to be their better self. They are very different. What are the blockages in the system in regard to changing that mindset and creating more collaboration with the DPOs and the people who advocate best for themselves?

Mr. Adam Harris

I will take the final question on the barriers to move from the medical model to the right space model and there are a few factors behind that. There is no realisation in society of how deeply rooted our ableism is. I got an insight to this during Covid-19 because during the pandemic, we heard people say: that it is not possible live on less than €350 per week; that it is awful not being able to do what you want when you want to do it; and that they feel isolated in their communities and want to see others. You would empathise with everyone in that situation but it is not understood that this is what autistic people are asked to do every day and every year and that this is accepted as a normal reality for them. As long as we do not have disabled people working within senior positions in our health service and as long as we do not have people receiving the training they need there will always be a paternalistic view of disability that is highly damaging. A more cynical view is that the existing model is much better for the State because it is based on doing people a favour and giving people what it can, whereas if we move to the other model, it is about people being rights-holders and it is about obligations and accountability. That is what we desperately need to see.

Mr. David Doyle

I would ask why there is no plan. We need to examine who does the planning. There are professionals and experts and the experts are the people with disabilities themselves, along with their families. Until there is a coming together and a meeting of those minds, we will never get a proper structure for the planning of people's lives. I said in my submission that strategic planning for people with autism and intellectual disabilities is relatively easy compared with the acute sector and Covid-19 has shown that. It is lifelong and we know what will happen and what is needed during early intervention and when people are exiting school and entering adult life. We can plan for that but there is no structure to get the professionals and the experts together.

It is like the country itself; it is driven by budgets. The country is driven by cash coming in and cash going out by December. The opportunities for future planning and multi-annual budgeting are not there at the moment. We cannot plan for two or three years down the road because we do not know at that time whether our capital budget for next year or the year after will be guaranteed. Until a structure is put in place such that a plan can be provided with multi-annual budgeting, there is not much hope of us ever planning for the future.

Progressing disability is an interesting question. We have huge waiting lists and moving people around without putting in more therapists might not work. There is a lack of speech and language therapy, occupational therapy and psychiatry. We need a commitment from the Government to put in greater numbers of staff in those disciplines. The caseloads within the HSE are huge and I feel for the therapists because their jobs are impossible. A lot of them are going in and doing the assessments but there is no point in doing the assessments unless we have the intervention at a later stage.

Vice Chairman

I will move on to Deputy Higgins and then I will come back to Mr. McLoughlin.

Deputy Emer Higgins

I thank each of the five witnesses. They all brought valuable and unique insights, not just on behalf of themselves, their families and their services but on behalf of the communities they are representing as well. There are a lot of common themes within the statements we have heard today. Unfortunately everybody feels they have had to fight and advocate every step of the way, whether it is for themselves or their family members, and that is simply not good enough.

The model of care is coming up again and again. Mr. Harris put it well when he said that we are focused on health and not necessarily as focused on social and human rights. We need to move to being more person-centric because that is what disability services are about. They are about providing the right level of service, intervention and support to people who need it. I was pleased to hear the welcoming of the autism innovation strategy and the progress that is being made to develop it.

Mr. McLoughlin outlined the barriers that he and his family have faced, as well as the absence of planning for the future and the real fear that many carers have of what will happen after they are gone. That is something that we, as a Government and a society, need to put more planning into. The Autistic Paddies representatives spoke about having better planning of services from the get-go and having better engagement for the people who will be availing of these services at the end of the planning when it comes to actualisation.

Ms Mullan shared many real life experiences of people whose potential, whether that be living independently, hobbies, education or employment, simply are not being fulfilled and that is because we are not enabling that to happen. We need to examine how we can do that. Ms Mullan spoke about how the programme ended after 36 months, which concerns me. I would love to learn a bit more about that and about how Ms Mullan feels that could be looked at.

Mr. Doyle mentioned the big policy initiative of transferring the HSE disability unit into the Department of Children, Equality, Disability, Integration and Youth and giving overall responsibility to the Minister for Children, Equality, Disability, Integration and Youth. He also said that the family guardianship and carer's office could be part of that level of engagement, which answered a lot of the questions that Mr. McLoughlin set out at the start in terms of the fears of carers who are getting older, as well as what Mr. Harris has succinctly put together on the advocacy of all the networks' perspectives. I would be interested to hear if the other witnesses think that would work and what benefit that would bring to their families, peers or service. Would it be a good idea to transfer the HSE disability unit into the aegis of the Department of Children, Equality, Disability, Integration and Youth?

Mr. Tom McLoughlin

I will try to wrap the two thoughts together. On planning for the future, it is important to emphasise that there is a negligible amount of planning done for the present, if any is done at all. If there is no planning for current services, it is not surprising that there is no planning for the future. Mr. Harris's comments on the charitable mindset are relevant. I brought up the educational model because of the comparison between what is physically available. For example one 18 or 19-year old student might be attending University College Dublin or Trinity College Dublin, whereas an equivalent might be banished to an industrial estate.

There is a lack of central planning. A central Department could work on that. I would also pick up on the point of who does the planning. While parents can make an input, they are overwhelmed and it would not be realistic or fair to expect parents of second and third level students to plan the third level educational model of their kids. Equally it is not practical in a lot of instances that parents could take the place of proper expert planning of an infrastructure for people with disabilities and with a need for lifelong services.

There is quite an amount of talk of new directions whereby if parents are only given money, they can go out and source services. That is all well and good but we spent our lives trying to source something which, quite simply, is not there. The only people who can put that in place are the Government and the Department. Many different section 38 and 39 bodies are involved in this and are advocating but everybody is operating without any infrastructure. When I say "without any infrastructure", that is probably not an overstatement.

I will pick up on Mr. Harris's point about the Covid-19 lockdown. It should have brought home the reality of the social isolation and exclusion of people with disabilities from everyday life. The lockdown worsened that isolation and exclusion but they are realities. A dedicated Department would be a good idea but the situation also requires bringing together a lot of skills. I do not think the idea that parents can invent something for their own individual kids is achievable, though perhaps I am too old. I would use the analogy that we would not expect parents to design educational training or a social life for their kids. What would happen if most parents of my age were to design the living facilities for their kids? There is an absence of infrastructure. The hard work of designing and implementing a service that caters for kids and adults with disabilities must happen. The money is being spent but much of it is being wasted. That is my view.

Ms Gillian Kearns

I will address the transfer of the disability Ministry. I will speak personally and not as a member of the group. I am a parent and my child is also autistic. I referred my child to services when at the age of four. My child is now nearly nine. The child has been seen by zero professionals. They were aged out of the early intervention service. We have had to fight. We had to pay privately to seek a diagnosis, which we got. My child was obviously autistic. At no point has anybody met my child. They have decided that as she is coping fine in school, what do they need to do? That is the story for many people. While I empathise completely with what Mr. Doyle, Mr. McLoughlin and Ms Mullan were saying about being parents of children who are autistic or have intellectual disabilities, there seemed to be very limited understanding of the number of us who are also autistic and the impact that has on our ability to do the same fighting. We have additional difficulties in that regard. Diagnoses actually talk about our difficulties with social communication although I would prefer to call them differences in social communication. Many of us have co-occurring mental health conditions and chronic fatigue conditions. We are having to fight as well, on top of trying to live our day-to-day lives.

Transferring to a disability Ministry sounds very good and effective. My concern, like what is happening in progressing disability services, is that at present, waiting lists in Waterford are in the multiples of thousands. We have all received a letter stating that our children have been transferred. Absolutely no timeline has been provided for when any child will be met. Multiple roles are not filled. People were seconded during the pandemic and have not returned. This needs to be given teeth and weight. It cannot be another way of pushing everything down the line and a child again goes to the end of yet another waiting list until the parents just give up.

My family is in debt because we had to pay for private services. It was very expensive. We were greeted with people telling us we just bought the diagnosis anyway, which is not helpful. If this is transferred to a new Ministry, it must not become another way to kick the ball down the line, if that makes sense.

Ms Jean Mullan

As Ms Kearns and others have pointed out, throughout the life of someone with autism and an intellectual disability, there is a fight for services. This becomes particularly acute when people are coming to the end of their time in school and are reaching the age of 18. Many services stop at that point and those 18-year-olds cease to be eligible for them. They are patted on the head and told to go off and live their lives. It is a difficult transition for most of us when we move from the school setting into adult life. People with autism and intellectual disabilities need extra support around that time.

I will mention a positive, in that along came the ability programme. This is another thing that happens from time to time. Excellent programmes are rolled out but they have a short duration. In this case, it was 36 months. The programme was rolled out throughout the country. I was involved in the programme in my area and it was excellent. It picked up kids when they were aged 15 through to the age of 29, which is the time when people are trying to figure out what comes next. It was person-centred. The programme looked at each individual and asked what they needed. Some people are looking to go into further education and others are looking to participate more in social activities, work experience and what have you. There was a range of things involved and each person had a support worker to help and facilitate them in the next stage of their lives. There were very good outcomes. I know that one young man who had been, like many people, shut up in the family home was facilitated to start volunteering at the local radio station. That has led to him doing it on a continuous basis. Another young person was given an apprenticeship with a dry stonemason and that has also evolved into a longer-term situation. These are all little efforts at a community level but I feel that if that sort of project could be scaled up to be nationwide and permanent, it would be of huge assistance for young people at that stage of their lives. It would lead to fewer problems down the line because they would take an essential step into their adulthood and, hopefully, be able to progress thereafter in a better manner.

Mr. Adam Harris

I will speak to the Deputy's question and pick up on Mr. Doyle's point. It is an interesting idea. There are probably two layers to the question. There is a political responsibility piece and an operational piece. One of the problems we have had for a long time, particularly when we talk about adults, is that there has been one stool for health and another stool for everything else. If an adult wants to pursue further education, get a job or access certain services in the community that are not specifically health-based, the Department of Health and the HSE will say it is not a matter for them. However, if that person speaks to any other Department or agency, he or she is told it is a health or disability matter and the person concerned should go back to those services. One of the good things about the transfer of the disability policy unit from the Department of Justice and the disability section of the Department of Health into the new Department of Children, Equality, Disability, Integration and Youth is that there is, hopefully, an opportunity to think about disability in a broader way.

The challenge from an operational point of view is that there has always been three stools, namely, primary care, disability and mental health. Many people in the community fall between those stools because there is a lack of accountability. It is worth saying that a majority of disabled people actually get services in primary care and mental health as opposed to disability. We need to ensure that now there are two political masters, there is not a situation where that only gets worse. It is clear that what is there now does not work. It is for the HSE and the new Department to show in the coming financial year that it can work. If it does not, there are questions to be asked as to whether it can operationally be delivered in an agency that has two Departments overseeing it.

Deputy Violet-Anne Wynne

I thank all the witnesses. It has been a thorough, whirlwind journey through some of the direct lived experiences of people with autism and people's experience within their own families. It is commendable how everyone can synthesise so much into so little time. I genuinely thank them all for doing that and for providing the committee with such powerful statements to inform our action and work.

Everyone on the committee will be disappointed to hear of Ms Kearns's experience. It is very disappointing that at this stage no professional has seen her son. If there is any way that the committee can help with that issue, I think we would be up for the challenge.

My son was diagnosed with autism in 2017. I spend a lot of time wondering what state Ireland will be in. I understand how bad it is now but I wonder about the years to come. His childhood has been a challenge, trying to access any kind of consistent and tailored service in the public sphere, particularly as we are based in rural west Clare. I hope that through awareness, policy and legislative change, we can remedy and resolve some of the barriers and battles that each of those before the committee have spoken of today so that exclusion and inequality is not as pervasive for disabled people in the future.

My colleague, Deputy Funchion, brought forward a Bill that, while passed unanimously, was never developed. It would have established a cross-party committee mandated with producing an autism strategy within six months. We do not need commitment after commitment to make a national autism strategy. One commitment should be enough and it should be followed through.

I will turn first to Mr. Harris. His opening statement began by using the terms "charity" and "rights-based". For many, care for marginalised people and equality groups in Ireland was left solely in the hands of religious groups. He mentioned "paternalistic grace". We are a country with a plethora of charities that are predominantly not rights-based. How should we transform them so that we would have a more social model, with a person-centred and rights-based approach and culture?

My second question is to anyone who wants to comment. Recently the Autism Spectrum Disorder Bill 2017 was discussed in the Dáil. I feel this is language we should move away from. As individuals with direct lived experience, what labels work and do not work? Is it simply a matter of personal preference?

The behavioural interventionist therapies to which Ms Kearns referred are not grounded in human rights and agency. She said there is no data or research on the prevalence of these techniques being used. Is it through anecdotal evidence that she is aware of such therapies being used? Can she give more information so that we can come up with an action to prevent them from being used into the future or any further information on that?

Mr. Adam Harris

The Deputy's remarks on language are as important. While language can seem like a small thing, it does inform the world we live in. We need to move away from language that stigmatises. Many of us prefer to say "autistic" because it takes it as a positive identity rather than a medical thing that can be taken away or put up or put down.

There are a few things that we can do. I accept that we have a patchwork quilt of services, which have emerged the way they have emerged, but within the system that exists there is a lot we can do to move towards a rights-based model. First, we could commence legislation on the Statute Book about giving people with disabilities rights. This country has a history of passing disability legislation and then not commencing it. A large part of the Disability Act 2005, which at this stage would need to be updated, has not been commenced. That is worth saying. The most radical thing we could do is to personalise budgets. Unfortunately, money is power. As long as we are giving money to services as opposed to individuals, we will not have accountability and we will not have people's needs at the centre. Systems will always fail and things will always go wrong. We need to look at how we regulate supports and services within Ireland. It is very much the Wild West within autism. Many so-called therapies and interventions are deeply harmful and dangerous for autistic people. We have heard of the problems with ABA and behaviourism today. There must be much greater regulation of these sorts of supports, so that our services deliver rights-based supports. Finally, we need the optional protocol so that disabled people have a tool when all else fails.

Ms Gillian Kearns

Mr. Harris has covered a lot of what I would have said. One way to transform services is to have more neurodivergent people informing how those services are set up. That would be a huge step in the right direction.

On language, it should be "Nothing about us without us" so that the people who should be asked this question are autistic people themselves. As Mr. Harris said, the vast majority of autistic people prefer the term "autistic". It is an inherent part of who we are and informs our entire personality and neurotype. It is not something we can take away or that can be cured and, therefore, we prefer it. Many polls have been done on this and many questions have been asked in online spaces. The overwhelming preference is for autistic. Obviously, individuals can identify as they like but that is how it is as a community.

We would also like to move away from the use of functioning labels, such as mild and severe. Do people ask if a person is mildly neurotypical? Everyone has different support needs and everyone needs support in some ways. No man is an island. These labels are demeaning and dehumanising, while saying nothing about what support people need. It would be much more helpful to ask and to talk to people as humans.

The Deputy mentioned the Autism Spectrum Disorder Bill. While there are disabling parts of being autistic, and much of that is in the social world in which we live and how that is not set up for us, being referred to as disordered is very dehumanising. I see it a lot in contexts where I do administration with parents, and that is the language professionals use so I am not having a go at parents about this. They will say things like "my ASD child". They are literally saying, "my autism spectrum disordered child". As Mr. Harris said, language is really important and no human being deserves to be spoken about in those terms.

I apologise. As obviously this is quite emotive for me, I will move on before I get upset.

Behavioural interventionist therapies and therapeutic services in Ireland are already here. They are already in use and are being employed by many services. They are informing much practice. My background is early childhood education. I have worked in schools. I work in care settings and I see them being used by people who may not necessarily be trained as an ABA therapist but who are using the techniques. However, a good few of our major universities offer ABA training courses. NUI Galway and DCU offer them and Trinity College has an entire department. People in Ireland are being trained in these interventions.

As I said, it is a multibillion euro business and there is so much recent evidence on the harms that are caused. We included the harm and the ethical implications of what it is in our submission. There are so many rights-based infractions on teaching people that who they are inherently is wrong. We are very concerned about compliance. Compliance training is what they are trying to do and that is the language they use. Teaching young people to override their own, inherent understanding of themselves and to conform leaves them highly vulnerable to abuse.

Our major concern with ABA is it is leaving already vulnerable people even more vulnerable to abuse, because, they learn to subsume their feelings and beliefs about themselves to a higher authority. I am gone off track. ABA and the harms it has caused form a growing body of research. The Cochrane report is an independent psychological report that did a massive study on ABA and found no evidence of it being effective. A growing body of research shows it is actively harmful.

Autistic people have a very short life expectancy. I am 44 and would be considered an autistic elder because our life expectancy is between 31 and 55 years of age. As Mr. Harris said, one of the largest reasons for autistic deaths is suicide, especially in the case of those without an intellectual disability. Linked with knowing the harms of ABA and knowing we have a shortened life expectancy, it is hard to argue we should be rolling it out throughout the country.

Deputy Seán Canney

I thank all the witnesses for their forthright deliberations to us. I will cut to the chase. The autism Bill which James Reilly had brought in and passed in the Seanad was left in abeyance because the Dáil fell. I took the decision to bring it back into the Dáil, which we did. We have given a lifeline to the Government, in the sense we have given it time to come up with its strategy. We intend to bring the Bill forward for Second Stage this time next year. There are significant issues with the language in the Bill presented by James Reilly. We are seeing a huge number of amendments in consultation with the witnesses, including AsIAm, Autism Ireland and all the other groups, to make sure the Bill is fit for purpose and reflects what we are trying to do, which is give a legislative underpinning to autism in Ireland. Let us get it right.

I keep repeating this and I will say it again. As a public representative, I see many things in my work. However, as a politician, I am not proud of how we deal with disabilities in total and how we deal with people who have disabilities and their families. Mr. McLoughlin talked about the future and planning for it. The biggest concern I get from every parent, no matter what age he or she is, is what happens when he or she is not there. We have to urgently address it to make sure parents have at least some comfort to know there is a plan.

From my work on this committee with my colleagues, it is clear that providing personalised budgets is essential. There should be a full Ministry for disabilities with its own budget. In 2016, when the Government was formed, my colleague at the time, Finian McGrath, became the Minister of State with responsibility for disabilities and there was great hope. However, he told me he would have a fight with the Department of Health at the time of every budget to try to secure money from it to do the things he wanted to do. He was very committed to it. I do not doubt the Minister of State, Deputy Rabbitte, will have the same challenges. No matter what Department one is in, if one is a subsection of it, one is subservient and has to take what one can get at times.

Too many things are left to chance and to organisations such as those represented by the witnesses. At the end of the day, too much is left to parents without any back-up. It does not matter what it is. It is wrong and we have to put it right. This committee has a responsibility to take on what the witnesses are saying and that they, as people involved in disabilities, autism and the future, have to part of the solution. Their solutions have to be brought into the solutions required and they must not be dictated to by politicians or the public service or Civil Service who think something is best for the witnesses.

I come across many issues in child services, early intervention and all that type of thing. There is a willingness among all political parties and politicians to do something about it. This committee probably has a responsibility we have to grasp to make sure that goodwill is transformed into what is needed. I look forward to bringing forward some proposals and measurements over the coming months in order that everybody will be able to participate in getting solutions. It can be hard for a parent to talk about his or her experiences. It is very brave and I thank the witnesses for doing so in a public way. I do not have any questions. I offer my genuine support, which is not just political rhetoric. Everybody on the committee feels the same way. That is what we have to do.

Senator Fiona O'Loughlin

I thank the witnesses for their brave, strong and compelling testimonies.

I have had the opportunity to engage with Mr. Harris on several occasions previously, but it has been really good, and humbling, to listen to all the other witnesses this morning. I totally agree with the comments of Mr. Doyle in respect of intellectual disability and autism being the one sector that can be pre-planned within the Department of Health and, obviously, the Department of Education. It is infuriating that there is a lack of planning in that regard, particularly in the context of transitioning into second level or after a person turns 18. I spent two hours yesterday with the Minister of State with responsibility for disability, Deputy Rabbitte, and the Minister for Further and Higher Education, Research, Innovation and Science trying to address that funding gap. It was previously the case that some programmes were paid for by the Department of Health but it is now saying the funding should come from the Department of Education, while the Department of Education is saying the funding should come through education and training boards, ETBs. Only five ETBs have signed up for this, and they are the ETBs in Dublin, so the rest of the country has a two-year gap in funding for vocational and educational training programmes for young adults with intellectual disability. It is really frustrating. I completely agree on the need for future planning and multi-annual budgeting.

I note the section of Mr. Doyle's written submission in respect of the 1,250 people who are supported in the family home by a primary carer over the age of 70, with 400 of them being supported by a primary carer over the age of 80. There is a significant need for that to be considered.

Ms Mullan referred to the particular challenges faced by people with disabilities in rural Ireland, particularly in the context of transport. There certainly needs to be a stronger link between Irish Rural Link and health and educational services, etc. It is an excellent service that can help to address the challenge that exists but we need to be able to co-ordinate it with those services.

Mr. McLoughlin discussed the fact that the transition from the educational model to the adult disability service lacks coherence. That is certainly something I and other members are finding an awful lot. We have seen how difficult it is for parents to assess the range of options that are available. I ask Mr. McLoughlin to elaborate on that issue. What recommendations does he believe are needed?

As regards gathering data, data are needed for planning. The intellectual disability database is available and it is very helpful in informing services. It involves data being gathered when a baby is born and it is recognised that the baby has an intellectual disability. That is very recognisable in the case of a person who has Down's syndrome, for example, but I am disturbed to learn that when a person is diagnosed with autism or an intellectual disability, that is not captured. I would have thought such data would be gathered in another database that could be aligned with the intellectual disability database or there would be a provision to add persons who are diagnosed. It is not about labelling people; it is just to be able to provide the services that are needed in terms of co-ordinating educational opportunities and transport, which we discussed, and just being part of a community and society. I invite whichever of our guests wishes to respond to come in on those issues.

Mr. Tom McLoughlin

I will come in briefly on the issue of the transition. One aspect of the transition is that the person is going from a structured system to what is pretty much a totally unstructured set-up. I refer to the comments of Ms Mullan. I am not commenting on applied behaviour analysis, ABA, etc., but there are a lot of red herrings or magic mushrooms out there. By and large, parents cannot be expected to sift through that. When it comes to the transition from education to adult services, there are two aspects. The first is who is doing it. The second is the fact that there is a reinventing of the wheel trying to figure out what the needs of the person are in an adult world when those needs are already well known from an educational point of view.

The bigger difficulty is simply that, by and large, the adult services are a mirage. It is a case of the emperor having no clothes. There is nothing out there. I think Mr. Doyle referenced disability managers. We had an excellent disability manager. The guy should have been awarded numerous medals, given the number of cases he had to try to manage. He had to take people a year before they left school and try to sift through endless unclear placements on the other side. There are fundamental problems with what is available and the transition process itself is fundamentally flawed. It is almost a case of having to tear it up and start it again.

I acknowledge the need for rights-based legislation but I urge caution in that regard. The process of having to go through legislation or a legal case is an indication that the system has failed. By the time there is a hearing and the case is processed, etc., endless years will have passed and it will have exhausted the parents and distracted people from the core issue. We should not have to engage lawyers for everything we do in life. It is incredible that we still need rights-based legislation but we probably do because the State is a little reticent to step up to the plate. There is significant goodwill but the bigger issue is that the hard yards and the hard work of putting something in place have not been done. We have been doing this for more than 12 years and still struggle with the incoherent multiplicity of services, so, of course, parents starting when their children are aged between 15 and 18 will struggle. It is incoherent. If that incoherence is recognised upfront, that may signal progression. Looking for something that is not there is quite an exhausting process as well.

Mr. Adam Harris

The question on data relating to autism is interesting because, even leaving aside the issue of where there are autistic people and how we can plan for services, a big problem we have in Ireland is the dearth of data relating to autism. Much of the time, even the statistics and research on which we rely come from Britain. That is unfortunate and problematic. A logical place to start is with the census. There is no question on the current census that an autistic person can naturally tick or fit into. The categories are not necessarily relevant to autism. There are questions relating to mental health conditions, which some autistic people might tick, and there are questions relating to intellectual disability that some autistic people might tick, but there is no neurodevelopmental or autism option. That is unfortunate because the statistics that come from the census are often what is cited in the context of disability. There is no question about the fact that there are thousands of autistic people missing from those data. I would like to see a new census question in that regard.

It should be possible to plan services based on prevalence rates. For example, we know that one in 65 children in school in Ireland has a diagnosis of autism and we know that in many countries around the world that the number is somewhere between 1.5% and 2%. That holds true in every community so it should be possible for the State to plan accordingly.

With regard to an autism database, we should be mindful that trust has been severely damaged in light of recent events, particularly around the "RTÉ Investigates" programme. In addition, internationally there has been lots of problems where autism databases have been used for research that would not have been in compliance with the wishes of the autism community and perhaps would have been closer to eugenics research. If there was to be an autism register, it would be very important that participation was voluntary, the data was anonymised and the governance of the database directly involved autistic people.

Ms Gillian Kearns

My comments are moot now because I was going to address what Mr. Harris said about the concerns of the autistic community about a database. Much as we might like it not too be true, autism and being autistic are still very stigmatised. It is not something that we feel comfortable disclosing. I have not disclosed to work, although they will probably find out now.

Again, referencing the dossiers that Mr. Harris talked about, the trust of the autistic community has been shot to bits and we have huge ethical concerns about maintaining a database. If I put my child on a database now, he or she will have no concept of what he or she have been consented to. Do I have a right, therefore, to put my children on a database and then for that information to follow them for the rest of their lives? Will registration impact on their employment chances, college or life insurance? These issues need to be examined and clearly thought out.

I understand completely that there is a need to know about the prevalence of autism so that the Government can provide services. Mr. Harris made a good suggestion to include a question on the census. That way, we would get the information we need and it is not personalised data thus avoiding concerns about where to store the database and who would have access. The autistic community has ethical concerns about creating a database. Much as we would like not to believe it, the bulk of research and money goes into research into finding a cure for autism, which is not what the vast majority of the autistic community has an interest in and, as Mr. Harris has said, we believe that the database would be used for the purpose of eugenics. I reiterate that in general the autistic community is very concerned about the idea of having a database.

Today's meeting is about autism and intellectual disability. However, there is a need to recognise that very few autistic people do not have co-occuring other neurodivergent diagnoses such as attention deficit hyperactivity disorder, ADHD, obsessive-compulsive disorder. OCD, Tourette's syndrome or mental health difficulties. In order for services to really provide there needs to be a recognition of that. I helped organise Ireland's first Neuro Pride festival last August. Personally, I do not know another autistic person who is just autistic. Most of us have other things going on. Personally, I am autistic with ADHD and possible dyspraxia and I have definitely have dyscalculia. There needs to be a recognition of that reality. I mean that people do not just have autism and an intellectual disability or autism without intellectual disability. For services to really be tailored and rights-based then there needs to be recognition of the multiplicity of neurodivergence.

Ms Jean Mullan

I would like to follow up on the Senator's point about rural transport. As I am sure everyone knows, this is a huge problem for all rural areas in Ireland. Even if we get to a place where services are lined up, and have support systems ready to go, if people cannot get there, then nothing works. We cannot have services located in every little community all over Ireland so it does come down to transport, but we need to consider various options. The Senator mentioned the Irish Rural Link transport system. The system is being examined and it definitely needs to be extended.

Bus Éireann and a private company provide services in my area but none of the buses are accessible for wheelchair users, which is a major issue. The transport provided must be accessible to transport people from A to B. For the people who live in my area, availing of a lot of their services entails anything between a 90-mile and 100-mile round trip, and that takes a massive chunk out of a person's day. As Ms Kearns has pointed out, people with autism generally have a range of things, thus necessitating many appointments in any given week or month, which is a lot of travelling time. The other option that should be examined is bringing professionals to the clients. It would make much more sense for the psychologist, occupational therapist or speech therapist to go to people. That would be a far more efficient use of time and it would be much less stressful for families.

Getting to and from schools is an issue that I mentioned in my opening statement. I know of a number of families whose children have transitioned into second level in the community school but no arrangements have been made to transport them there. Again, parents are stuck with having to transport their children to and from school, which means that the parents are excluded from the employment market, taking up further education options, etc. That is a major issue. Transport and escort services and so on should automatically be put in place.

Mr. David Doyle

Mr. McLoughlin mentioned the transitioning of school leavers. Parents are frustrated every year to have to wait until the end of August and sometimes into September to see whether their child can access day services. I experienced this professionally and personally ten years ago when my daughter went through the process. This has been highlighted for a long time. We know that people will leave school at 18 years so why can the Government not plan properly for that eventuality? To be fair, the local CHOs now have early profiling, which is done in conjunction with the service providers, but the money does not come down. Can someone make a phone call to have HSE send the money early so that the CHOs know how much funding they have to spend and can assess how many people they must accommodate and they, in turn, can let the providers know, and start planning? The CHOs could plan nine months ahead if they knew the budget that was coming. All we need to resolve the matter is to ring the hierarchy of the HSE and ask them to send the money as we know much the service will cost and how many people will leave the school this year who are going to need the service. The profiling, which is now done earlier in September, October or November, will indicate the service that is needed. My main argument is that the difficulty is not at a local level. Why is the allocation not made earlier? It is so frustrating for families.

As a complaints officer within the organisation, I hear the frustrations of families down to the wire every year. It is within members' remit as Deputies and Senators to push that on.

Mr. Tom McLoughlin

As Mr. Doyle said, it goes down to the wire and is always delivered at the last minute. It is pointless frustration.

Deputy Holly Cairns

I thank our guests for attending and sharing their lived experiences. People with autism are a diverse cohort with different individual needs, which our guests elaborated on, and those needs change over the course of their lives. Our State services have not developed an understanding of this to provide the proper range of educational, health and social support services that are required for people to exercise their right. Mr. Doyle is quite right in saying it has not allocated adequate funding to do so. It is the job of all of us present to push for that. The Department's capacity review this year concluded we will need €350 million to meet the unmet needs of people with disabilities, but less than one sixth of that has been allocated. We need structures, resources and everything else to ensure people with disabilities can access education, employment and housing, which is a major issue. As Mr. Harris rightly pointed out, the need to ratify the optional protocol to the UN convention is key to that and it is disgraceful that has not yet happened. I assure our guests we will do our best to try to make that happen, as is the purpose of this committee, and we will keep pushing for it.

I cannot ask all the questions I have, due to time constraints, so I will ask just a few. If any of our guests have other points and there is not time to make them, they might give a written response or get in touch with my office and I will revert to them. The vital role of carers and families has been a clear theme in this meeting. Unfortunately, their efforts usually go unappreciated by the State. Carers are consistently overlooked, despite the very important and often exhausting work they do and will keep doing out of love and dedication. I could not agree more with Mr. Doyle's call for a statutory provision for a liaison office for families, guardians and carers within the disability Department. Will he elaborate on the importance of this?

Ms Mullan outlined the need to recruit more people to provide in-home respite for exhausted parents and how the provision of services travelling remotely and being provided in the home could address issues related to rural transport. How that would work?

A point that is often raised relates to the additional stress and hardship put on families in trying to negotiate State and publicly-funded services. In most cases, as the witnesses all outlined, people have to fight for basic services. I often hear of people having to turn to online groups for information and advice. While there agencies such as the National Advocacy Service for People with Disabilities, is it time for a new service from which families would be given a single point of contact who could help them navigate the services? Mr. McLoughlin raised specific issues with agencies. Will he elaborate on potential solutions for families? Ms Mullan might answer the same question, from the perspective of someone living in a rural area. Since becoming a public representative, I appreciate the issues people face in this regard. In my constituency, some people have to travel a three-hour round trip to receive 30 minutes of essential speech and language therapy for which they have been waiting for more than two years.

Ms Jean Mullan

The subject of respite has been raised by a number of parents. It is a no-brainer. Parents such as me are getting older but are offering 24-7 care, 365 days a year. It is endless and, obviously, respite is essential. If someone is lucky enough to have a large extended family nearby, perhaps he or she can ask for their help, although in many ways that is less than ideal. Many people are just on their own. It is particularly acute for lone parents. I am fortunate I have my husband to back me up but for lone parents, there is no break at all. I am again thinking of the family and widow I know. Any time she has to bring her autistic son to an appointment, she has to bring her older son along, which means he misses a day of school. It is a long journey for her and it is exhausting.

Part of the answer could be to have people who are available. She has applied for this, but people do not even know how long the waiting lists are because they are not told. They just apply and wait and nothing happens. The ideal solution would be if somebody could go to her home and, perhaps, look after one child while she is gone. Alternatively, a solution might be to have a kind of drop-in centre where trained people could look after people with disabilities on a short-term basis. In the longer term, it becomes about weekends, holidays and so on. Some resources are available but, personally, I have never been able to avail of them, so I do not quite know how they work.

On the point about navigating services, it would be very helpful to have a directory of services. It takes an awful lot of time even just to find out whom to contact. Some directories relating to services for children have been made in our area, but there should also be a directory of services across the board for all ages. It can be really difficult even to find out whom to contact to access a service. That might be considered.

I have addressed the transport issue, which is very significant. The other day I read that in Greece, there are mobile mental health units. Post pandemic, there has been a huge surge in the need for mental health services. Again, it is difficult for people to travel to services, so why not have a mobile unit? That is another out-of-the-box suggestion that might resolve part of the issue.

Mr. David Doyle

On the question regarding a statutory office for guardians and carers, the input of the family and the carer into service delivery is essential. We are the experts. We know best the people in question but probably most family members are burned out and find it really difficult. They do not know where to go or whom to contact. Having one statutory office they can contact and to which they can represent their views and highlight gaps in services is essential. People are burned out.

During my tours seeking answers, I heard a saying from a psychologist in the US, namely, that a person's needs are best met by a person whose needs have been met. By that logic, if we can look after the needs of a family who look after someone, that person's needs will be best met. That brings me to the issue of respite care, a very valuable service. Everybody needs a break, not only for the family but also for the person being cared for to get their own break from the family. They need it just as much. The service is underestimated and undervalued. The Comptroller and Auditor General gave a talk about value for money but it was not about just costs but, primarily, effectiveness and efficiencies. The value of keeping people at home as long as possible is of great value and is a cost-saving measure for the country.

If some respite care can be provided to give those people a break, it can keep the crisis or emergency from coming. It can be pushed down the line by giving the family support either in respite care or in home support. The long-term economic value to this country would be huge. I believe more money should be put into respite and support for the families.

Senator Alice-Mary Higgins

I thank all the speakers. There are many points to follow up but I will try to deal with three or four. I will begin with the early part which is the question of diagnosis. I am particularly interested in comments the witnesses might have on adult diagnosis. The other part is co-diagnoses because the witnesses mentioned that there are frequencies. I know that Ehlers-Danlos syndrome, EDS, and ADHD often co-occur, but there are other co-occurring issues. What are the difficulties in accessing a diagnosis both for children, and we know that is a major obstacle, and for adults in later life? Also, with regard to diagnoses for co-occurring conditions, what are the difficulties or obstacles and what can be done about them? We are aware of the situation that happens across the health service whereby because the person has autism, when he or she is talking about another condition he or she is told that it is just part of having autism or being autistic. That has happened in respect of ADHD and in respect of depression. Perhaps the witnesses will comment on ensuring not just that the structure is in place in terms of access to diagnosis but that within the diagnostic system there is a recognition and a listening to the fact that people can have two or three different conditions on which they may need support.

Mr. Harris mentioned accessing health services in general. I believe the NHS has tried to improve how it is doing that with regard to people with autism accessing health services in general and being listened to and engaged with in terms of not just the mental health supports they might need but other aspects of the health service. I do not wish to put people on the spot but for people who have both had autism and then been parents there are things such as our maternity services. We have heard from groups who have appeared before the committee that there are also obstacles when one is accessing other parts of the health system. What could be improved in that?

I was very interested in the damage being done by inappropriate interventions, and it is something we have to examine seriously. In terms of interventions, what are the rights-based alternatives that are based on supporting the person rather than managing the person? How do we move towards that? Where are the areas and the best practice that we should be starting to invest in and to scale up in that regard?

I was struck when Ms Mullan mentioned the turnover of the professionals. There is the question of having secure terms and conditions and secure relationships, which is particularly important for people with autism. The relationship with the healthcare professional is important for everybody, but it is of particular importance that there would be consistency and that somebody who has a relationship can build it up. That has come up even with regard to why personal needs assistants can be important, because they are responding to the person's particular needs.

There are two more matters. One is the disability capacity review. Mr. Harris mentioned this and the funding for it. We know that there is a cost of disability report, which this committee has been pressing for as well. Do the witnesses think that the costs of disability for people may be invisible? In the case of people with a physical disability, some of the costs are more measurable, but what are the costs of disability in respect of people with autism? Augmented and alternative communication was mentioned. Is that something that needs to be resourced in terms of the disability capacity review? That almost was not on the table when the disability capacity review was first being done.

The committee is very passionate about pushing on the optional protocol so people can vindicate their rights. Do the witnesses have comments on the experience of using the other equality legislation that is in place, for example, equality legislation regarding discrimination or the public duty in equality and human rights? Has there been success in using any of those tools with regard to persons with autism?

There is a final matter. Some of the replies can be sent in writing as I know there is not a lot of time. How do we rebuild trust after the dossier issue? It is not just about the fact that it damages trust in a future database, but it also damages trust in terms of families seeking diagnoses for their children or for themselves. When we engaged with the Department's officials they talked about those individual cases. What we want to know is what they should be doing to rebuild trust overall in people's engagement with health professionals with regard to autism. What needs to change to send the signal that they have learned a lesson from that process?

Ms Gillian Kearns

I will talk about some of the things raised by the Senator; I cannot talk about all of them. First, on diagnosis as an adult in Ireland, there is no public pathway or it is extremely limited to those who have some other condition. Let us just say there is no public pathway to diagnosis in Ireland for an adult. The vast majority of people who are diagnosed when adults have to pay privately, after years of struggle, years of being dismissed and years of being diagnosed or misdiagnosed with other conditions and of being treated for those conditions when it turns out that they did not have them. There is no public post-diagnostic support. If somebody receives a diagnosis there is nothing for that person. It is a case of: "There you go. Best of luck to you".

I received my diagnosis privately. It was extremely expensive. I had to pay for my child as well. I am extremely fortunate but I recognise my privilege in being able to do that. There is a vast swathe of people who are not able to afford it. There are thousands of undiagnosed adults in this country whose views and understandings are not being heard here today. The vast majority of us who are able to access the diagnosis recognise that. Self-identification is accepted within the autistic community because of the extreme difficulties in seeking a diagnosis.

The Senator mentioned co-diagnoses. There is a growing body of evidence, just in the last five years, of the prevalence of conditions such Ehlers-Danlos syndrome and hypermobility syndromes in the autistic community. Currently, there is no EDS specialist in Ireland, so that is a difficulty with receiving diagnosis. Similar problems occur with ADHD. There are no public pathways or very limited public pathways and then medical gatekeeping regarding medication. In terms of anxiety and mental health differences, there seems to be a perception that being autistic inherently means one has anxiety, and that is that. This happens in children's services as well. If the child receives a diagnosis of autism, the child will then struggle to access support for the anxiety because there appears to be an understanding that anxiety is an inherent part of autism. It is not. That is not what autism is but, yes, there is a predominance of mental health conditions, as Mr. Harris noted, especially anxiety, among autistic people.

Again, that ties in to being part of a world that is not set up for us in any way.

There seems to be no understanding in maternity services that autistic people can be parents. We are presenting today as part of a group. There are so many autistic parents who are not recognised at all in any service. There seems to be a belief that autistic people are incapable of being parents, which is obviously not true. There is no recognition, but that goes across the health service. I do not think it has been published, but Dr. Mary Doherty gave a talk to the Psychological Society of Ireland on her research into autistic people's difficulties accessing healthcare. I know Mr. Harris was asked this specific question so I will not go into too much detail but there are many barriers to autistic people accessing healthcare. A major one is how the vast majority of GP services do not offer online booking. Many autistic people, myself among them, really struggle with making phone calls. We have problems around executive functioning, so if someone who is trying unsuccessfully to get through to a GP over and over, it is very difficult to keep doing it.

We were asked about suggestions on inappropriate interventions. Our submission referred to the use of restraint and seclusion and included a guide from a group called the Alliance Against Seclusion and Restraint. It lists multiple methods and interventions that can be employed. We contend there should never be a situation where someone is put in an environment or put under pressure where it is necessary to escalate it to seclusion or restraint. The argument you will hear is that it is for their safety and so on, but autism is not about meltdowns and overwhelm. That is what happens to us but it is not inherently what autism is. That is a person in distress. It behoves services providers and the rest of us to look at the environment and to change the environment, not the individual.

I will forward information on from the Therapist Neurodiversity Collective to the committee. It offers many alternatives to the use of behaviours intervention and non-rights-based, non-person-centred care. An example from Ireland of people who are doing good post-diagnostic support, again privately, is Thriving Autistic. It offers counsellors and therapists, the vast majority of whom are neurodivergent. It was founded by someone who is neurodivergent themselves. That is an example of getting it right. I was very fortunate to be able to link in to a diagnostician who offered that as a follow-on service. Once I got my diagnosis, I was in a position to link in with that group about something I wanted to deal with. I spoke to it about employment because I did not need support around getting the diagnosis; I already knew, to be honest. That is an example of how to do it right and how to offer support in a way that is helpful, person-centred and neurodivergency affirmative.

Personal assistants are not available to people with an autism diagnosis at all unless they have a co-occurring diagnosis. That needs to be changed to a needs-based not diagnosis-based provision.

Vice Chairman

Before I got to the other witnesses who have indicated, I will call Senator Seery Kearney as she is under time pressure to get to the Seanad.

Senator Mary Seery Kearney

I thank the Vice Chair. I appreciate that. I will be as quick as I can. From Mr. McLoughlin, it is really striking the worry about the future and planning. Everything he said is valid and I support it 100%. In recent weeks, especially after the Donegal report, parent after parent has contacted me worried about what it says. Where are the HSE, HIQA and all the services the State throws billions at? The forward planning for our citizens from the moment they are born, all the way through their lives, appears absent. One problem is we have a lack of a transversal approach in policy, that everything is so siloed that a person must apply to multiple services across different Departments. The answer is in Mr. Doyle's proposal of elevating the Ministry to a full stand-alone Department, but that would have to have the authority across State bodies that report to different Departments. We just passed a Bill that moves an aspect of child services relating to school liaison to the Department of Education. It happens in other areas, so there is no reason it should not happen here.

The distress caused to families is outrageous, and I have been appalled by it, even before I became a Senator. It is an area I am particularly passionate about. There is a dearth of services for autism in Dublin South-Central or places for autistic children in schools. I am horrified that from the moment of birth, there is no continuity. It may take a couple of years for autism to be manifest, but most parents have an instinct very early on. The services should be there and it should be streamlined. We are not inventing the wheel. This is not something new, like Covid, that we suddenly have to react to.

I sat with a mother last year who had just given birth to a child with Down's syndrome. The things she had to apply for to prove her child had a disability were shocking. I know that is completely separate to autism but it is an ableist privilege attitude. That has come out over recent weeks as we have heard lived experience. I really take Mr. Harris's point. Covid brought it home. It is time we started using that language. While it is shocking in 2021 to hear the word "eugenics" used in an Oireachtas committee, that language needs to be brought out. We need to say this is what is going on.

I am very struck by Ms Kearns's submission and the analogy and the equivalence to gay conversion therapy. I can back that up with an experience I had recently. I went to an event with WALK in Drimnagh celebrating peer advocacy and representation among its service users. One person after another stood up to advocate on behalf of their particular issues. One participant spoke of how he masks his disability, that he spends his life pretending it is not there. It is loosely connected to what Ms Kearns was talking about, but it is very striking, and we should not have a world where people have to pretend they are something they are not. We should have a world where there is inclusion. There are opportunities, such as this committee and the passion of its members, which has a voice to support the voices of the witnesses, because it should be about their experiences, with them being at the centre of all the decision-making and the rest of us here to serve and respect that.

I do not have questions I just wanted to row in behind that. When I read the equivalence with gay conversion therapy, it resonated with me because of what I heard at the WALK event that evening and the idea that people have to pretend.

The lack of planning is shocking and I will now go to the Seanad Chamber to say all that. I thank the witnesses and apologise that I will miss their responses, but I will view the debate later. The witnesses are welcome to contact me via my office. I will do what I can during my time in the Oireachtas - hopefully it will be a long time - to speak out on this.

Vice Chairman

I will now go back to the witnesses to allow them to address the points raised by Senators Higgins and Seery Kearney. I will take the witnesses' responses in the order indicated prior to Senator Seery Kearney's contribution.

Mr. Adam Harris

Senator Higgins raised a number of points. I will address a few of her questions without repeating what Ms Kearns said, all of which I agree with. On adult diagnosis, there is a major urgency to resolve this issue. When considering autistic adults who do not have a diagnosis, generally speaking, they are people who the State has failed and often misdiagnosed or, indeed, are people who are members of other minority or disadvantaged groups, including women and the Traveller community. There is a significant burden on the State to recognise that and provide support. What I will say might be beyond the purview of this committee. A challenge faced in adult diagnosis is that the present diagnostic manual we all work from was written by neurotypical people and does not capture the full range of autistic experience. As a result, many autistic adults find it difficult to access the diagnosis they require.

On the point raised about healthcare, there exists a huge dichotomy which most people do not understand. The GP is the gatekeeper for diagnoses. When parents seek a diagnosis for their child, they typically go to their GP first to get a referral. That has led most people to presume that everybody who works in healthcare has advanced knowledge in autism. However, the experience of many autistic people is that most healthcare professionals have a basic understanding of autism. This is serious because it has led to autistic people, who tried to access health services when they were younger, encountering bad and traumatic experiences due to the sensory environment or how people communicated with them. An impact of that is if people are seriously ill later in life, they do not present for the care they need. It is therefore very serious.

It is sad, in this day and age, to learn of the experience of autistic adults who go to their GP to discuss an autism assessment or when they are unwell and they want it known that they are autistic so it can inform their care. The language still used in response to people, such as "it must be very mild" or "you don't look it at all" or "there is not a thing wrong with you", is hugely problematic. There are major barriers, and training can play a part in tackling that. The NHS has been rolling out a programme called the Oliver McGowan training programme in autism. That is something we need here for every healthcare professional. There is also a pathways piece. In the context of mental healthcare, it seems to nearly suit the system that there is no solution to this problem. When services are already at breaking point, the fact that autistic people cannot access them seems to be advantageous for the health system, and that is a problem.

On the cost of disability, in our pre-budget submission, we called for an increase of €20 a week in the disability allowance. We saw this really as a minimum increase when you look at the Covid payment, versus what disabled people, through no fault of their own, are asked to live on. The fact that there was only a €5 increase, considering inflation and so on, was insulting. There are significant additional costs to being autistic coming from things like executive functioning; people losing things or needing multiples of things; people often needing specialist equipment, clothing or furniture; the fact that many people have to pay for private therapies; and the fact that many autistic people have poorer health outcomes. These all lead to additional costs.

On the equality legislation, I am aware of a ruling by the Workplace Relations Commission against Bus Éireann relating to a child whose accessibility requirements were not met. It is a patchwork quilt and there are barriers to using the existing equality legislation. The level of support people need to make complaints is not understood. The advocacy service is not properly resourced, which is a problem. Another problem lies in the knowledge about autism of people, particularly in the Judiciary. A person might be lucky and encounter someone who understands or a person might encounter someone who does not understand at all.

On the issue of the dossier, one of the biggest problems in what has happened since the dossier issue arose has been what I can only describe as a wall of arrogance from the Departments concerned. There was an opportunity to step away from the technicalities and consider that at the end of the day, two Departments were using the Judiciary to actively prevent people from getting their rights. There has been no recognition of this or no apology. The behaviour of senior officials since then has only made matters worse. The big thing we need is a culture change. One way we can do that is to move to a model where there is somebody there as you go through your access to the service. As we heard from families and self-advocates today, as we interact with State services, we need somebody who is on our side and who is not telling us that he or she does not do that or that he or she cannot help us.

Ms Marja-Kristina Akinsha

I thank Senators Higgins and Seery Kearney for their insightful questions and comments. I will quickly connect to what Ms Kearns said and provide a short personal story. I am a woman, a mother and an autistic person. I was diagnosed a few years ago, before I became a mother and that helped me a lot. When I went through pregnancy and dealt with the maternity system, I had knowledge of why things were difficult. There are many people who do not know before they become pregnant and who struggle with sensory overwhelm in hospitals. They do not know why it is so difficult and they question whether they will be a good parent. My diagnosis, which I was privileged to get, allowed me to really understand. As Ms Kearns said, a diagnosis is hard to get but once you get it, you realise what it is worth. Instead of questioning yourself for years or thinking "if only I did something better" or "if only I were to try harder", you understand it is not you. You figure out what you are meant to be like.

I wish to bring attention to the continuing difficulty for women in accessing diagnoses. I spoke to a public health nurse recently. As an autistic mother who has a child, I was wondering whether I also have a neurodiverse child. I was told all the old criteria, like if a child does not speak or if a child does not do this. However, that was not me as a child, because I was talkative. The old criteria are still being used, even for the new generation of potentially autistic children. There needs to be understanding that the criteria are often outdated and that people do not have training. This all needs to be brought up to the current research and understanding of autism.

Mr. Tom McLoughlin

I wish to make a few comments on services and the directories etc. in the hope that someone can intervene with the Department. Different agencies have vastly different availability of psychiatric, speech and language, occupational therapy and psychology services. There is no crossover between those services. Typically, those professional services can only work for a specific agency and within a rigid system, it is a further layer of rigidity that is causing excessive delays. From our own perspective, we had a positive experience in the psychiatric area. One of the agencies our older son is with brought in an eminent psychiatrist neurosurgeon from the UK. This neurosurgeon paid for his time multiple times over because of the vast improvement in services. Can that be replicated in other agencies? Not on your life. Equally, we now go to that neurosurgeon in the UK. We look at our own private health insurance and this is where you are dealing with multiple layers of difficulty and inflexibility.

You cannot get psychiatric services abroad when it comes to private medical insurance. Another thing to highlight is that there has to be something wrong with the system, with predominantly females working in the clinical area and in the whole carer area. I think this is a factor in staff turnover, with maternity leave etc. You have to ask why many staff do not want to come back into the services. I would not say it requires just a tweak, because it would make a huge difference if we better used and more efficiently used the range of services available to us.

Ms Gillian Kearns

I want to raise two separate things. I want to elaborate on what Senator Seery Kearney said about gay conversion therapy. The reason we included that link is that the man who created applied behavioural analysis, ABA, was the exact same person involved in the-----

(Interruptions).

Ms Gillian Kearns

I refer to the impact it had on me. I began masking when I was four years old, and it had a substantial and continuing impact on my mental health and ability to really know who I was, because I had been doing it for so long. Again, as Mr. Harris said, I cannot count the number of times I have heard that I do not look autistic. I should it get it tattooed.

In terms of accessing the health services, and this is true across most services for people with disabilities, our health services and disability services are set up for people to cope, not to thrive. There is no understanding that disabled people can thrive if given supports, and would happily do so, without having to fight for every single thing. Our lives are not inherently miserable, 24-7. Most of our difficulties come from trying to fight for every little thing.

I also work in homeless services. I am not going to give any more details on that because of confidentiality, but I have witnessed very obviously neurodivergent people accessing the services I work in multiple times. We tend to recognise our own. They are very obviously neurodivergent, but they have addiction problems and they have difficulties maintaining their day-to-day living expenses so they run into difficulties with renting. At no point in the screening is it even considered the underlying reason they are struggling so much, either self-medicating with alcohol or other substances, may be that they are undiagnosed neurodivergents. That is a really important thing that needs to happen because autistic people and other neurodivergent people are disproportionately represented within homeless services and within the Prison Service. Often if those people had an awareness of or knew what was going on, then the core issue could be addressed, rather than papering over the cracks. A really important point is that it should just be standard. If somebody presents with an eating difficulty, because unfortunately that is a very commonly occurring condition, with mental health difficulties or with addiction problems, that screening should happen, right across the board. The vast majority of people may not be, but at least we would have a better idea and people would get the support that would be beneficial, rather than spending years getting incorrect help or the wrong help completely for them.

With ADHD, for example, it is known that medications work differently on the brains of people with ADHD. It has to do with neurotransmitters and dopamine and all that. A person could be accessing support and getting a medication that is detrimental to their health because they do not know they have ADHD. I understand this meeting is about autism, but it is a similar situation. That was the other point that I wanted to make.

Vice Chairman

Thank you very much Ms Kearns. We have come to the end of our meeting. I found your contributions and the interaction between the members and yourselves to be very enlightening. What I have taken from it is that there is a lack of planning, a lack of co-ordination between services, a lack of multi-annual funding, a lack of training for our health professionals, teachers and employers and a lack of consultation with autistic people around all of those services. Much is lacking, so a lot of work is needed. Your contributions today will help to move that forward and inform us in our work going forward. Hopefully, we can deal with some of those issues. Again, thank you very much for your contributions.

The joint committee will hold a private meeting at 9 a.m. on Thursday, 11 November 2021, which will be followed by a public meeting at 9.45 a.m.

The joint committee adjourned at 12.26 p.m. until 9.45 a.m. on Thursday, 11 November 2021.