Micheál Carrigy (Fine Gael)
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The second item on our agenda is a consideration of autism policy and the services and supports provided by the State for autistic people in particular. I welcome our witnesses to today's meeting. We are joined by representatives from the Association of Occupational Therapists of Ireland, AOTI, Mr. Odhrán Allen, chief executive officer, and Ms Rosalind Noël, senior occupational therapist, children's disability network team, CDNT, Cope Foundation, and member of the association's management team; from the Irish Association of Speech & Language Therapists, IASLT, Ms Aine Lawlor, chairperson of IASLT's professional standards standing committee, and Ms Maria Gleeson-Cary, speech and language therapy manager; and from the Psychological Society of Ireland, Dr. Louise Higgins, senior clinical psychologist.

Occupational therapists, speech and language therapists and psychologists are responsible for a range of services and supports that have a material impact on the lives of autistic people and their families throughout their lives. The committee has heard from teachers, researchers and other professionals about difficulties that autistic people face in accessing these therapies. We have heard directly as a committee from parents about the difficulties they face on a daily and weekly basis. We have also heard from the HSE, which acknowledges that the lack of therapists across the 90-plus children’s disability network teams, CDNTs, and the significant number of more than 800 funded State jobs that are not filled within the CDNTs. We look forward to hearing from our witnesses about what services and supports could ideally be provided for autistic people. We would also like to hear how to remove any unnecessary barriers which may be preventing autistic persons from accessing these vital services and supports.

Before we hear from our witnesses, I propose that we publish their opening statements on the committee's website. Is that agreed? Agreed. I call Mr. Allen, chief executive, to make his opening statement on behalf of the Association of Occupational Therapists of Ireland.

Mr. Odhr?n Allen:

I thank the committee for inviting the Association of Occupational Therapists of Ireland, AOTI, to this meeting of the Joint Committee on Autism to discuss services and supports provided by the State for autistic people. This is a very important matter and AOTI welcomes the committee’s in-depth consideration of it. This statement is informed by occupational therapists working in different practice areas with autistic individuals across the lifespan, as well as occupational therapists working in education and research.

The centrality of the need for a society that accepts and affirms autism and neurodiversity is an overarching principal that AOTI advocates. This is reflected in our call today for societal level change, collaborative thinking and new practices so that Irish society becomes more inclusive of autistic people. Occupational therapists believe that a just society is one where individuals, families and communities have the capabilities and the freedoms to choose to participate in the everyday activities that they need and want to do in the different environments of their life. These everyday activities that are important to us are what occupational therapists call occupations, hence occupational therapy.

Occupational therapists are experts in supporting and enabling everyday living and can, therefore, play a key role at both societal and individual levels to help autistic people thrive. Occupational therapists focus on the person, the environments where they live their life - like home, school, the community and the workplace - and the occupations they want to participate in to help them live their life how they want. Supporting people to engage in occupations and facilitating their full participation in community life, at both an individual and a societal level, is the bread and butter of our profession. Our professional perspective provides a valuable framework to guide positive change for autistic people in the areas of health, education and work, and across the lifespan.

I would like to first set out an overarching occupational therapy perspective. We recognise and uphold the following values and principles which we believe must be central to the analysis of services and supports provided by the State for autistic people. On participatory democracy, we welcome the collaborative consultation with all stakeholders being undertaken by the committee as it examines the services and supports provided by the State for autistic people. Community participation and co-design are a central pillar in contemporary democratic society and in the design, delivery and review of public services. Autistic people need to be central to this and empowered to participate in our communities and in Irish society.

On language use, the stated preferences of autistic advocacy groups and the autistic community is that of identity-first language. This must be incorporated into all actions that emanate from the committee’s work and into services and supports provided by the State for autistic people. We should be guided by autistic people to ensure we are using the correct language and frameworks when developing and delivering services.

On human rights, a human rights approach to the development and delivery of public services is imperative. This will align with the increasing recognition of neurodiversity and a shift from awareness to acceptance as a means of realising autistic people's human rights and potential.

A human rights approach means Ireland must ratify the UNCRPD optional protocol. A thorough review of the Disability Act and Education for Persons with Special Educational Needs, EPSEN, Act is also required. We welcome the Department of Education’s current consultation process on the review of the EPSEN Act and call again for a review of the Disability Act.

Autistic people are not a homogenous group and the diversity of experience of autistic citizens across the many different contexts of their lives must be acknowledged and accepted. It is also important to recognise the convergence of intersectional barriers for autistic citizens and the diverse challenges these can create. Cross-departmental and cross-sectoral working is essential to ensure the rights of autistic citizens are met and to deliver services and supports provided by the State that are inclusive of and meeting the needs of autistic people.

I will clarify briefly what occupational therapy is. Occupational therapy affirms diverse ways of being and doing while also recognising that individuals face barriers to participation in everyday activities and roles due to personal, environmental and societal factors. Occupational therapists can support and advance the life goals and occupations of autistic and other neurodivergent children, youth, and adults. Occupational therapists are traditionally employed within the health and education services in Ireland and their work has therefore often reflected these service models. However, occupational therapists are well suited to supporting autistic citizens outside of these traditional models and approaches, which can sometimes limit occupational therapy’s potential. A neuroaffirmative framework is advocated to enable the development of occupational therapy services that best meet the needs and requirements of autistic citizens. There are many reasons an autistic person may seek the support of occupational therapy, which helps them participate in their meaningful occupations and activities of daily life. Having an autistic neurology can often be disabling in a neurotypical world as there are many sensory, motor, psychosocial and environmental challenges that an autistic person faces. Occupational therapy can assist autistic people with addressing these challenges. To provide optimal services and supports, we need to ensure autistic people have the right to timely and thorough interdisciplinary team assessment carried out by suitably qualified and experienced professionals, including occupational therapists.

I will hand over to my colleague Ms Noël to complete our opening statement.

Ms Rosalind No?l:

We propose a framework for achieving change in how services and supports provided by the State for autistic people are delivered based on the following points: equality, mainstreaming, neuroaffirmative approaches, and a lifespan perspective.

Beginning with equality, the autistic community should have equal access to all aspects of health services in the same way neurotypical people do. Barriers to accessing services based on a diagnosis of autism need to be removed. It is not uncommon for a service to refuse a referral because a person has a diagnosis of autism. This contravenes the principle of equality in the provision of services and supports by the State. There is a wealth of evidence showing autistic people can have other health needs for which they seek to access services. The current practice of excluding citizens on the basis of an autistic diagnosis is discriminatory and hard to justify within a human rights context.

Moving to the area of mainstreaming, most health services are built and delivered with a neurotypical person in mind. The term "neurotypical" describes individuals who display typical intellectual and cognitive development. Individuals who are neurotypical develop skills, such as social or organisational skills, at around the same rate as others their age and in their culture. The term "neurodivergent" describes people whose brain differences affect how their brain works and includes autistic people and others such as those with attention deficit hyperactivity disorder, ADHD, dyslexia and dyspraxia. Our health services, and indeed all public services, need to be reoriented so they become inclusive of the needs of neurodivergent people.

We advocate for this mainstreaming approach whereby all health services become autism-friendly and inclusive of autistic and other neurodivergent people. An example of mainstreaming in action is the town of Clonakilty, which has become an autism-friendly town. Staff in businesses, shops and public services are trained to be accepting of autism and deliver their services in a way that caters for autistic people.

An example in our health services where mainstreaming would make a real difference is in acute services and emergency departments. The way emergency departments currently operate means that they are highly challenging environments for autistic people to be in at a time when they need those services most. Current overcrowding and other service pressures further exacerbate this problem. An example of where the health services have taken a mainstreaming approach that works for a particular group of people is dementia-friendly emergency services. From the point of access to an emergency department, the service is tailored to the specific needs of someone with dementia and therefore provides for better health outcomes and a much better experience of using the service. Occupational therapy is at the forefront of developing and delivering dementia-friendly services. With this experience and collaboration with the autistic community, the occupational therapy profession is well positioned to assist the State in delivering health and other public services in an autistic-friendly way.

I turn to neuro-affirmative approaches. The medical model focuses on finding a cure for disease and disorders. This approach assumes that a person is broken in some way that needs to be fixed. The aim is to improve functioning, so doctors focus on making someone more whole or giving them a normal life. The medical model has historically shaped the way health services were designed and delivered in Ireland, as well as the way we understand human nature itself.

Using a neuro-affirmative approach means that we do not view autism as something that is wrong with a person or that something is broken or needs fixing. Instead, autism is accepted as a different neurotype - the way your brain works - that is a part of human diversity. AOTI advocates for a neuro-affirmative approach to the design and delivery of all health and public services in Ireland. A neuro-affirmative approach to health and disability services works on the assumption that autistic people have an innate potential and identity that can best be actualised by providing person-centred, neuro-affirmative services and supports.

The world is designed for neurotypical people, which, in turn, disables autistic and other neurodivergent people. A neuro-affirmative approach requires us to re-orient how we design and deliver public services and restructure our communities so they enable, rather than disable, autistic people and support their full participation in everyday community life.

I refer to the lifespan perspective and cradle-to-grave health services. Early intervention and assessment is essential in order for autistic children and their families to get the supports and intervention that will best enable the autistic child to reach their potential. Occupational therapy is one of essential services delivered at this crucial stage. Autistic people may continue to benefit from occupational therapy and other health and social care professional services throughout the lifespan. These essential support services must be provided by the State.

I turn to play and leisure. Play is an essential component of childhood and child development. Occupational therapists understand the importance of play and leisure participation in people's lives. It is a priority for the occupational therapy profession that autistic citizens have equal access to play and leisure opportunities. Play for autistic children can look different from neurotypical children’s play and we need to move to accepting and supporting this. Autistic children can be excluded and marginalised in mainstream leisure and play facilities and clubs through lack of acceptance, poor infrastructure and availability of supports and services.

Given the importance of play, we need a recognition of the right to play in the home, in the community and in school. We need to develop inclusive play and leisure spaces so autistic children and young people are not excluded in their communities.

At an individual level, supporting autistic sensory processing and regulation can be a key factor to enable participation and engagement, and this is something occupational therapists are experts at. AOTI also calls for an urgent review of Ready, Steady, Play, the national play policy, as this policy was published in 2004.

Supporting autistic students in education to ensure they reach their potential and thrive within the educational system is a key role for occupational therapists. A lack of supports within the education system poses significant challenges for autistic students. They often experience environmental barriers to social participation in education, such as lack of acceptance and negative attitudes among peers and staff. In addition, inadequate support across the school system, as well as support in managing educational transitions, such as from primary to secondary, further limit the educational potential of autistic students.

Progress is being achieved by the National Council for Special Education, NCSE. We know the committee is aware of the NCSE and its work. Being able to expand and further develop the NCSE's supports in schools is essential so that autistic students can benefit from occupational therapy intervention as well as other HSCP services. This will help create a more inclusive and enabling school environment for autistic children. An expansion of the occupational therapy role is advocated to address educational environments, especially the social, physical and policy aspects, to promote social participation and inclusion of autistic students. Occupational therapy can help reduce the segregation of autistic students throughout their educational journey.

Occupational therapy is now recognised as a key support service for students in higher education and many Irish universities now directly employ occupational therapists on campus to deliver services when needed by students including autistic and other neurodivergent students as well as those with physical and sensory disabilities and mental health difficulties.

Work and employment are very important parts of autistic people's lives, and occupational therapists work with both autistic individuals and employers to support active participation in the workplace. On an individual level, autistic people may benefit from support with managing disclosure, accessing reasonable accommodations and developing strategies to manage their worker role and responsibilities. Workplaces can benefit from a universal design approach to support participation for autistic employees.

Occupational therapists are skilled in universal and inclusive design and are at the forefront of driving efforts to re-orient work environments, including physical and virtual spaces, so they accommodate the needs of autistic employees. Occupational therapists use adaptive strategies, tools and technologies across the lifespan to help autistic people enter and remain in the workplace. Our workforce can be greatly enhanced through the inclusion of autistic people in workplaces.

In the area of health management, occupational therapists play an essential role in supporting autistic individuals to manage their health and well-being across the lifespan. As dual-trained health professionals, occupational therapists can also help autistic people with the psychosocial and mental health impacts of living with autism. Occupational therapy can help autistic adults meet their long-term mental and physical health needs, maintain a good quality of life and achieve a state of well-being and satisfaction with everyday life.

In conclusion, our statement was informed by occupational therapists working in different practice areas with autistic individuals across the lifespan, as well as occupational therapists working in education and research. We have set out some of the key values and principles that AOTI believes must be central to the analysis of services and supports provided by the State for autistic people. We have also set out a framework we believe is necessary to achieve change in how services and supports provided by the State are delivered to autistic people. This framework focuses on: equality in all service delivery; re-orienting mainstream services so they become inclusive of the needs of autistic and neurodivergent people; taking a neuro-affirmative approach in the provision of health services and other public services; and taking a lifespan perspective.

We thank members for the opportunity to meet them today and value their detailed consideration of this important matter for Irish society. We look forward to discussing this further with them today and welcome any questions they may have.

Ms ?ine Lawlor:

I am here with Ms Maria Gleeson-Cary on behalf of the Irish Association of Speech and Language Therapists, the recognised professional association of speech and language therapists in Ireland. We thank members for this opportunity to speak with the committee today.

The IASLT is a committed advocate for people with communication and feeding support needs. Speech and language therapists work with autistic people across a range of settings ensuring that their rights under the UN Convention on the Rights for People with Disabilities are promoted and protected in order that all people with a disability, including autistic children, young people and adults, get the support they need to thrive and to live happy and full lives. The IASLT welcomes the recent publication of the committees report on aligning disability services with the UNCRPD and the references to the IASLT’s submission to the Joint Committee on Disability where we raised a number of issues, some of which are reflected in today's submission.

We strongly advocate for the use of a neurodiversity-affirmative paradigm as the overarching prism through which disability, particularly autism in the context of today's submission, is viewed, discussed and supported. We recognise there are lots of different and valid ways of experiencing the world and that there is great strength and power in a neurodiverse human population. The neurodiversity paradigm affirms that all neurotypes have unique strengths and needs that are deserving of consideration and respect, with support needs varying from person to person. As a society, we must value people for who they are and work towards the full inclusion of people with disabilities. Communication is a fundamental human right that is central to human interaction and participation. Communication support is a crucial element in the implementation of many articles in the UNCRPD. As a society, we have a responsibility to ensure that all autistic people have access to appropriate communication supports to ensure they can access education, healthcare, employment and community activities. It is crucial to recognise the diverse communication needs of autistic people and to provide appropriate accommodations to support autistic people to fully participate in all aspects of society.

The IASLT advocates for the development of speech and language therapy services outside of traditional health services and the outcomes from projects, such as therapy in schools, continue to highlight the benefits of and need for speech and language therapists in education and mental health services, as well as primary care and disability services. Speech and language therapists have a unique role in assessing and supporting the communication needs of autistic people and in understanding the broader communication barriers impacting autistic people in all aspects of Irish society. As health and social care professionals, we also work closely with parents, carers and other professionals.

One of the areas named in the UNCRPD is the support of augmentative and alternative communication, AAC. The term AAC is often used to refer to high-tech speech generating devices but its true meaning is more expansive. An AAC system can include things like gesture or sign; paper-based tools, for example alphabet boards, phones or devices specifically designed for communication. As speech and language therapists, we advocate for the use of robust AAC communication systems. Many users of AAC require a total communication approach, which includes a combination of tools to support their communication across home, school and social situations. Robust AAC systems require tailoring to the individual and their communication needs, while allowing for their evolution over time. Autistic people in Ireland do not have equitable access to speech and language therapy supports or to funding pathways to help them access robust communication systems.

We acknowledge recruitment and retention are challenging for the health service at this time. There has been investment in posts, which is welcomed. The reconfiguration of children's disability services has resulted in increased challenges for staff working in this environment, which must be acknowledged, with speech and language therapists raising clinical concerns, an increase in complaints related to changes in work practices and a significant amount of clinicians' time and expertise being spent on non-clinical demands. In order to support both recruitment and retention of staff, the culture and issues of clinical governance need to be addressed in order that staff are practising in a safe environment and have appropriate support. Clinical governance frameworks should be developed and implemented consistently across the country to provide clinical assurance, accountability and allow for the development of service pathways, policies and clinical competency documents in relation to autism service provision.

The reorganisation of services under PDS has removed access for some and resulted in inequitable access to specialist services. Publication and implementation of promised policies to support PDS is imperative. In the absence of these documents and their implementation, there are inconsistencies and inequity in service provision for children and their families. This is impacting on the safe and effective provision of services and further creating challenging work environments for staff. The issue of pay and conditions for staff in the HSE and, in particular, section 39 organisations is also impacting on recruitment.

Access to timely identification and intervention for autistic children, young people and adults is vital to ensure their needs are understood and that they have access to appropriate support to ensure they lead a full life. Waiting times for speech and language therapy and other services are a critical issue. Addressing recruitment and retention issues in speech and language therapy is crucial and we advocate for a comprehensive workforce plan. Specialist pathways were to be established as part of the roll-out of PDS. Specific client-cohort-focused services or agencies had staff skilled in areas who could provide relevant supervision, support and training, but reconfiguration dismantled this structure. The promised specialist supports have not been consistently developed and, in some cases, there is no local access to specialist support for autistic people. New pathways to access specialist support are required. Clinical specialist speech and language therapy posts are required nationally, given the multiplicity of expertise required, for example, in swallowing or AAC, and with consideration of the complex presentations that require specialist support.

A national framework for prescribing and funding of communication devices is required. We need a system that allows rapid access, including a loan model, so people can quickly access and try out different devices to ensure they get the best system for their needs. Development of an assessment and intervention service for autistic adults who do not have an intellectual disability and currently do not have access to autistic support services is recommended. We also recommend training and support for education staff across primary, post-primary or vocational training and third-level institutions to ensure that reasonable accommodations of the individual’s requirements are provided. Support is also required to ensure that education is delivered in the most appropriate modes and means of communication for the individual and in environments that maximise academic and social development. We also require training for other health professionals, educators, public representatives, including people such as gardaí and judges, on neurodiversity concepts and the use of appropriate augmentative and alternative modes, means and formats of communication.

As a society, we have come a long way in the public awareness of autism. However, we must continue to foster collaboration across all sectors of society to promote and protect the human rights of people with a disability, including autistic people, within our society. We must ensure the services and supports we provide are accessible and are neurodiversity affirmative in their content. We must also address the gaps in services and supports. These gaps have been highlighted for children and their families who try to access intervention. Significant gaps also exist for adults, with services often ceasing when a young person turns 18.

The significance of the change required in respect of disability services is acknowledged. However, to rebuild trust with service users and clinicians, it is imperative there are appropriate targets and follow-through on promised actions and strategies. We look forward to working with Government parties to ensure the implementation of recommendations from the report on aligning disability services with the UNCRPD as we work towards improving services for people with a disability.

Dr. Louise Higgins:

On behalf of the Psychological Society of Ireland, I thank the Chairperson and members for the opportunity to address the committee. The PSI is the learned and professional body for psychology in the Republic of Ireland.

In 2022, the PSI published an updated version of the Professional Practice Guidelines for the Assessment, Formulation and Diagnosis of Autism in Children and Adolescents. These guidelines were developed to help facilitate a high level of professional practice for psychologists. However, one of the biggest challenges faced by families is accessing a timely assessment for their child, with many often waiting years. Those accessing an assessment through the assessment of need, AON, as set out under the Disability Act 2005, have significant and lengthy delays despite a legal requirement to begin the AON within three months of receiving an application. The High Court ruling last March, which found the HSE’s preliminary team assessment, PTA, method of dealing with AON applications was unlawful, has resulted in a situation where many of the approximately 10,000 PTAs completed need to be redone, specifically those requiring an autism assessment.

PTAs were introduced by the HSE in 2020, despite PSI and other health and social care profession, HSCP, representative bodies clearly stating this was not in the best interests of children.

PSI welcomed the Report on Assessments of Need for Children published recently by the Joint Committee on Children, Equality, Disability, Integration and Youth. PSI agrees with the committee's recommendation 4, which states: "There needs to be an acknowledgment of the levels of resourcing required at all levels politically and within the HSE, in order to address the crisis in the disability sector". While PSI welcomes the development of autism diagnostic pathways by the HSE, we and other HSCP representative bodies have not yet been consulted. We are eager to ensure the mistakes in the implementation of the AON PTAs are not replicated.

Accessing intervention and supports is a further challenge for families. Research in recent years continually highlights the level of unmet service need for autistic children, with many families waiting years for supports. As of March 2022, none of the 91 children's disability network teams, CDNTs, was fully staffed, with an average vacancy rate of approximately 25% across teams and some teams being staffed only to around 50%. The consequences for autistic children and their families of unmet service needs are significant. Failing to provide timely services and services at an early stage increases the costs at a later stage and has a negative impact for the individual, families and society.

Autistic people experience significantly higher rates of co-occurring mental health difficulties. However, the reality is that many autistic children and adolescents have difficulties accessing mental health services. In addition, there is often regional variation in the implementation of any shared care for autistic children and young people who require services from more than one service provider. The recent interim report of the Mental Health Commission on the independent review of the provision of child and adolescent mental health services, CAMHS, highlighted major failings. This undoubtedly impacts on autistic young people accessing CAMHS.

It is now recognised that autism is a lifelong neurodevelopmental condition. Currently, however, autistic adults in Ireland can only access an autism diagnosis privately. Furthermore, services for autistic adults are minimal. A clear pathway is required for the diagnostic assessment of adults presenting with autism and the provision of post-diagnostic support for them. PSI has established a working group to develop guidelines for the assessment of autism in adults.

As stated in the committee's Report on Assessments of Need for Children, "failures within disability services over the last number of years have caused immeasurable harm to children, parents and therapists". Given the years of under-resourcing of disability services, it is imperative that members of the autistic community get the support they need in a timely way. To this effect, PSI makes a number of recommendations. The number of training places on all professional psychology training courses should be increased to ensure the recruitment and retention of adequate professional psychologists to address the high level of service need and current vacancies. To improve recruitment and retention, there should be immediate funding for all trainee psychologists. There should be a clear timeline for the implementation of the Government's disability capacity review to 2032 to future-proof and resource disability services and the AON process adequately. There should be changes to the current recruitment practices for psychologists, including the HSE national panel system for recruiting, to tackle the recruitment crisis and staff retention issues. We recommend efforts to retain existing staff in post by creating the possibility to promote those eligible to senior positions following a competency-based review. At present, this is not possible within services and is managed through the national panel system. This results in a loss of experienced clinicians from the disability sector to other sectors. We also recommend the creation of an agreed lifespan pathway within the public system for assessment and post-diagnostic supports.

Further recommendations regarding policy and reducing barriers for the autistic community are outlined in the PSI's detailed written submission.

I thank the committee for its time and I am happy to take any questions on the opening statement.

Micheál Carrigy (Fine Gael)
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I thank the witnesses for their opening statements. I want to get agreement of the members, as I need to step out for a moment, for Deputy Pauline Tully to take over the role of Cathaoirleach.

Marc Ó Cathasaigh (Waterford, Green Party)
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I did not think I would be first up to speak. It is nearly a shame to be reached first in that one gets so many questions, and generally speaking, people who go before one ask some of them. I want to focus on Dr Higgins's submission first of all. As a member of a party in government, it is enormously frustrating for me to read that kind of criticism, because it is entirely justified. I would like to drill down into this. Dr. Higgins's organisation advised against preliminary team assessment, PTA, and told people it was wrong. They went ahead and then the courts told them they were wrong and 10,000 of them had to be reviewed. It is frustrating to the point of anger. Dr. Higgins's organisation has still not been consulted about the new one. What were the specific concerns the witness raised with the HSE before the courts found the PTA was wrong? Was it those specific concerns that were then subsequently vindicated by the court?

Dr. Louise Higgins:

I share the Deputy's frustration on this issue. All our professional bodies submitted serious concerns regarding the PTA. It was recognised that this was not compliant with the Disability Act and that a PTA is effectively a screening assessment. The Disability Act is designed to identify the support needs of a child. We knew the screening assessment was not in the best interests of children and that it would not answer questions or provide a comprehensive assessment of a child's needs. This was very clearly outlined by all our professional bodies. However, it was a system that was pushed through.

There were many concerns for clinicians completing the assessments. We were acutely aware this was not going to meet the needs of children. As the committee has heard, families and parents are desperate. They come for a screening assessment which does not meet the child's needs or does not get the recognition. For example, this committee is looking specifically at autism. Children who presented for a preliminary team assessment did not get a diagnosis of autism from that assessment. The result has been that approximately 10,000 PTAs were completed, and our understanding is that many of them have to be redone. I had the figure of just under 5,000 that needed a diagnostic assessment. There may well be more. Many of those families are still waiting. The loss of time for families and children, the further barriers and delays, and the cost of this for services has been a real challenge when looking at recruitment and retention issues. PSI completed a survey around that time. Many psychologists stated they had already left or were considering leaving. It has come at a cost to service, but most significantly, it has come at an enormous cost for those children and families.

Marc Ó Cathasaigh (Waterford, Green Party)
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It is madness and it is maddening. Everybody on this committee, regardless of political affiliation, wants the assessment of needs to work.

We want progressing disability services to work, whatever its shape and form. We want the CDNTs to be staffed and working, which is clearly not the case. We hear weekly the frustration of parents who are up against a wall of bureaucracy that is not delivering results for children.

Mr. Odhr?n Allen:

I will point out that nothing has happened since the High Court ruling that would in any way assure AOTI. I am sure our colleagues in the other professional bodies agree that something in a similar spirit with a different name could happen again. There is nothing that would reassure us that the same mistake will not be made by the HSE. It would be fair to summarise by saying that the preliminary team assessment was not in keeping with the spirit or the intentions of the Act. While the HSE has vigorously denied it was a cynical attempt to move people from a statutory waiting list on to an enhanced statutory waiting list, it cannot but be seen in that light. However, there is nothing to reassure us that a similar mistake will not be made again.

Marc Ó Cathasaigh (Waterford, Green Party)
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That is not heartening to hear, but it is important that we hear it. It has often been portrayed to the committee that the assessment of needs is almost like a gateway into services. In general, people expressed a view that once they access services they have a good experience, if they are enough. However, it is probably inaccurate to portray it as a gateway to a promised land with an extensive suite of services available on the far side. The recurring issue is that we cannot staff the CDNTs. I am going to ask a very basic and blunt question. Why do people not want to work in the CDNTs? What is it? People are clearly voting with their feet. We cannot recruit, and we cannot retain staff in them. Can the witnesses tell me why?

Mr. Odhr?n Allen:

There are not enough occupational therapists, psychologists, or speech and language therapists to staff the need in the health services. That is a starting principle.

Marc Ó Cathasaigh (Waterford, Green Party)
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We have a lot of people choosing to work in the private sector above the public sector. People are making the decision that they prefer to offer their services privately rather than publicly.

Mr. Odhr?n Allen:

We feel that the current generation is being lost from paediatric services, particularly children's disability network teams. This is because of the negative experiences they have had during the transition from the previous service delivery model to the implementation of progressing disability services, PDS. In essence, we were supportive of the PDS model, but there was no fidelity to that model in its implementation. Its roll-out has been a horrendous experience for families, and for professionals. I think a lot of people have just left because it is intolerable. They have left with a sense of sadness and regret, because it is an area to which they were deeply committed. Some people feel they can only deliver the type of service families deserve by working privately. I am not going to justify people choosing to go private, because that is an individual's decision. However, there is no doubt that the roll-out of PDS has been a very difficult experience for families, and therapists on the ground. There are not enough staff because there are competing needs.

Marc Ó Cathasaigh (Waterford, Green Party)
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That goes to the workforce planning piece. We need to train more people across all of these disciplines. Funding specifically for psychologists was mentioned in one of the opening statements. Would anyone like to come in on that question?

Ms ?ine Lawlor:

Recruitment is definitely an issue. There is an issue in terms of workforce and workplace planning. To adequately resource disability services, an ongoing plan is needed for resourcing of disability services. So much has been trying to backfill posts. Net growth in staff required to carry out these services has not actually happened. As Dr. Higgins has stated, we are dealing with a huge vacancy rate in the services. Part of the reason is that we wanted to get college students into disability services. However, we have a huge issue getting student placements because staff are in crisis and it is much harder to take a student. The students then do not get the same exposure to working in disability services. That is not the whole story, because the retention piece is really coming across for us. It is that culture piece of disability services. Change under progressing disabilities has caused huge difficulties for staff. There has been a huge reorganisation without consultation with staff.

There are issues around clinical governance and changes which have happened for staff so that they do not necessarily feel safe or have that appropriate structure in place to work in. There is a clinical governance review taking place nationally but there is also the issue of follow-through on basic things like policy which were promised as part of the PDS programme which have never been actually implemented or agreed many years into PDS. This creates a very challenging environment for staff and families where each service is trying to decide on and find a way of working as opposed to allowing our clinicians, who have great levels of expertise, to deliver services to children and their families.

Marc Ó Cathasaigh (Waterford, Green Party)
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It must be heartbreaking for practitioners because people who make a choice to go into occupational therapy or speech and language therapy are doing it to make a positive difference in people’s lives. Does Dr. Higgins wish to comment on that question?

Dr. Louise Higgins:

Yes, regarding the timing of PDS and the establishment of the majority of the new CDNTs, it happened just after PTAs. PTAs were certainly very challenging and many clinicians made a decision at that time to step out of disability services. It also happened after Covid-19 where many therapists were redirected into testing, swabbing and different areas. This, on top of years of underfunding of AON and disability services, meant that, while we completely support the principles of PDS in respect of equitable access, collaborative ways of working and person-centred services, parts of which we all adhere to, the challenge was that those waiting lists did not move but got longer and increased.

The other challenge in thinking about PDS and the CDNTs is that some of the supports which were in place for clinicians prior to the PDS programme were dismantled. At a time when clinicians most likely needed extra supports, some of those support structures were pulled away. There was then a real loss of experienced clinicians because, historically, disability services were run with many areas of expertise around autism, intellectual disability and physical disability. The merging of that certainly presented challenges for many newer or inexperienced staff because there was a real need for continuing professional development, CPD, training, and all of those things. There are multiple factors why working in a CDNT is challenging and I hope I have explained that.

Mark Wall (Labour)
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I welcome all of our guests and thank them very much for their opening statements, which have been very insightful and have raised a number of questions which Deputy Ó Cathasaigh has referred to. I have a couple of follow-on questions.

One of my weekly or even daily tasks I have is dealing with families who want to build a room for their autistic loved one. One of the big issues we come up against is local authorities and the provision of such facilities for those people. Is this something the AOTI has come across and how can we encourage local authorities to provide the funding to reflect the importance of this provision, because the creation of such rooms has made a terrific difference for the families I have dealt with, to their loved ones, and to the quality of life of that individual. Perhaps this is something the association has come up against. Funding is an issue I have raised at this committee before and I ask the association to comment on that and the importance of it.

The association also mentioned in its opening statement the importance of autism-friendly towns and it referred to Clonakilty. This is something we have spoken about with AsIAm, whose representatives have appeared before the committee at various meetings we have had with them. Can I have a comment, please, on the importance of that and of training for individuals in shops, community centres etc.? That is something this committee would like to see developed further, together with the importance of having autism-friendly towns throughout the State and not just in the specific town mentioned by the association or in the others that are trying to be so at the moment? I am asking about a general State policy on autism-friendly towns and how the association would feel that would work throughout the State.

Regarding speech and language therapy, I thank the witnesses for the work done. To take up the point made by Deputy Ó Cathasaigh, how bad is the situation at present? I ask this because, unfortunately, I am contacted weekly and almost daily about this issue by people who cannot access services. Ms Lawlor mentioned there was no consultation with staff, as was the issue of their pay and conditions. How bad is the situation regarding accessing services now? I refer to the front-line services being provided by speech and language therapists. This is a major issue for families and I deal with it regularly.

Regarding AONs, and this question is for Dr. Higgins, I had a Commencement matter in the Seanad last week with the Minister of State with responsibility for disabilities, during which I was told that where I live in County Kildare, 2,665 people are waiting for an AON in that area alone. I have raised the issue of the need for this piece of paper continually with the Minister of State. How important is it in the overall sense of gaining access to services and getting in front of a clinician? When representatives of the HSE appeared before us, they were at pains to point out that an assessment of need was not needed for clinicians to make an assessment. Daily and weekly, however, families tell me this is not the case. The Minister of State also said this is not the case. From Dr. Higgins's perspective, how important is this assessment and piece of paper in accessing services and, most importantly, the right services?

Ms Rosalind No?l:

I will take the Senator's question about rooms. There are processes for this aspect. One is an assessment by an occupational therapist. I reiterate what has been said. We are talking about a very small resource that we have within the teams. To start this assessment process might be one task an occupational therapist is given. From a funding point of view, then, there are a couple of streams, including council funding and grant systems.

Mark Wall (Labour)
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Okay.

Ms Rosalind No?l:

There are grants and systems in place that do come through. Regarding the initial assessments, councils have employed occupational therapists to do some of them. Again, not all councils now have an occupational therapist to do this work. It can be put back onto the CDNT occupational therapist, who will know the child and the family, to do that piece of work. It could also be a lack of resources regarding why this process may be slow-moving.

Turning to making other towns autism friendly, this is some of the societal change needed that we have been talking about. It is about accepting and understanding a divergent population and how to make this more mainstream. I hope this has answered the Senator's questions.

Mr. Odhr?n Allen:

There is undoubtedly a great need for training. Awareness is only the first step.

Mark Wall (Labour)
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Yes.

Mr. Odhr?n Allen:

What we want is an acceptance in Irish society of the value of our autistic citizens and, therefore, training is needed. Equally, whatever about towns becoming more autism-friendly, one point we are making to the committee today is that our health services need to become autism friendly. We cannot assume that they are. In most instances, they are set up with a neurotypical person in mind. These environments can be very hostile, I do not mean behaviourally, but in a sensory context. I refer to the sensory experience of an autistic person going into an accident and emergency department. We must, therefore, do a great deal of training to ensure the mainstream services in place to provide every aspect of health services are aware of autistic people and are able to operate in a way that is autism-friendly. Taking this approach to towns and villages is then needed and Clonakilty is a model for how this can be achieved.

Ms Maria Gleeson-Cary:

Regarding the community access aspect, there are really no limits to the ambitions of autistic people. They deserve the right to be able to access all the community supports everyone else does and to be treated with understanding and respect.

That requires that level of training and that overall strategic planning from a Government and local authority level. As my colleagues said, we have fantastic awareness campaigns at the moment but it is about stepping up now. We have a lovely playground and there are lovely examples of inclusivity across the country but we really need to be more strategic and the training needs to be more strategic. The courts system, the Garda and our health service need more support in terms of training on universal design. We need our local authorities to have a range of housing opportunities available to support autistic adults as a lifelong approach. We need more accessible documents across the board from all parts of the community for people to be able to actually thrive and feel safe in their communities and to live independently as part of their communities and in their homes.

Ms ?ine Lawlor:

That leads into waiting lists. We all know there are hugely significant waiting lists for services but the point is around access. Children and adults, where there are services, are faced with barriers getting into them. Parents, children and adults who are trying to find the right service for them are being moved around from service to service. There needs to be signposting and ease of access to services. We have pockets of services that work very well and we have excellent skills clinicians who can provide fantastic services but it is about how families and people who have autism get to them. That is the challenge. There is huge inequity across the services and that has only been exacerbated through PDS. The other issue with some services is that, because of the redesign and the lack of formal structures that were put in place, lots of services are now trying to design how they manage the service and the waiting list. Some of that is good. There is innovation and pieces happening that bring down waiting lists but that is not happening at a national or a strategic level. It is further impacting children and their families trying to get to services. That is not even taking into account what happens to young people when they turn 18 and the lack of services for adults with autism.

Dr. Louise Higgins:

It is correct to say a child can access services even if they are waiting for an assessment of need, or if they are not. PDS made it very clear that we should be moving away from diagnosis-led treatment to treatment that is support and needs led. The reality, as Ms Lawlor was saying, is that there can be barriers when families are trying to get their children access to supports. The Senator mentioned the piece of paper. In the last year, the PSI published best practice guidelines around assessment. We would be very much of the opinion that the assessment is not just about the diagnosis. An assessment, done correctly, should really be a comprehensive picture of a child, outlining their areas of difference, difficulties and strengths but also being very clear about their support needs. We hear this as clinicians. Parents attach a value to that piece of paper and that diagnosis because it does help them access supports within the education system and financial supports. That can make a big difference for families. Does that answer the question?

Mark Wall (Labour)
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Yes. That is fine.

Joan Collins (Dublin South Central, Independents 4 Change)
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I do not think there is too much we can say about the reports. They are very detailed. A lot of thought has gone into them. At the end of the day, we are dealing with a situation that is not of the witnesses' making. It is due to the HSE's approach to setting up the CDNTs when it did not have the staff ready to go into them and setting up the preliminary team assessment.

I remember families contacting me at the time to say they were not getting access to them. They were leaving areas where other needs of their children were being looked after by other services. Many of them were in limbo for a number of months when they lost a service such as that of St. John of God. They were wandering in a vacuum for months or years.

I have a question for Dr. Higgins. She said she believes 5,000 people need a diagnostic assessment for autism. How many of these have been reviewed? How many are still waiting for an assessment of need? Dr. Higgins said there are changes to recruitment practices for psychologists, including for the HSE national panel system, to tackle the recruitment crisis and staff retention issue. As a professional in psychology, what changes does she believe are needed? Unless we start putting forward something solid to support speech and language therapists and psychologists, we will not get much further. Accessing the assessment of need is fundamental, as is getting the children's disability network teams staffed. How do we do this in the short term and long term?

I am exasperated from the point of view of the witnesses with regard to their services not being available to families and children. What can the committee do to progress the witnesses' services? The witnesses have put forward recommendations. Waiting times for speech and language therapy and other supports is a critical issue. How can we get on top of it? Specialist pathways are to be established as part of the roll-out of the progressing disability services programme. There is to be a new configuration to dismantle the structure. There are to be new pathways to assess whether special supports are required. As a member of the committee, I am frustrated and angry, as are other committee members and as should be the witnesses, because of the situation at present for the families.

What can the committee do with regard to children's disability network team, CDNT, staff retention and recruitment? Dr. Higgins made the point that to improve the recruitment of trainee psychologists, there should be immediate funding and the issue of pay should be addressed. Can she see any recognition by the HSE that these issues must be addressed to deal with the recruitment and retention of staff? I do not think that, in the longer term, getting staff from abroad will fill the gaps. The time it takes to put people through training will still leave gaps for another one, two or three years. I am very frustrated reading what the witnesses have submitted and listening to what they are saying. We can try to turn it around if we put services in place.

Dr. Louise Higgins:

To respond to the first question Deputy Collins asked, on how many autism assessments were not done after the preliminary team assessment and need to be redone, the answer is we do not know. As we said, we know that approximately 10,000 preliminary team assessments were completed. We know that just under 5,000 of these need an autism diagnostic assessment but there may be more. We do not know how many of them have been completed but I do know if there are still children and families waiting for assessments. They may have had a preliminary team assessment in 2021. We are now in 2023 and the assessment may not yet have taken place.

All our colleagues here would agree that there is a lot of work to do on recruitment and retention. We all agree that the HSE's panel-based system of recruitment is not working. It is not getting the right people at the right time in place. We are losing many experienced clinicians who may work in a team at what we call a basic grade or staff grade. They build up lots of skills and experience from being on the team but then when it is time for them to potentially be eligible for a senior post, at the moment the national panel system manages that. We can end up losing very experienced staff from disability sectors into other sectors. For a long time, we have been calling for that to change.

Some of the other recommendations are clear such as increasing the number of training places and planning ahead. Regarding an agreed lifespan pathway, consultation needs to happen with the representative bodies, including those here today and with front-line clinicians, as has been outlined. Work is ongoing to establish a pathway. Our understanding is they have been piloted in number of areas but our professional bodies have not been consulted on that. We would clearly recommend that that needs to happen to ensure that the mistakes that happened with PTA do not happen again.

Ms ?ine Lawlor:

As Dr. Higgins said, on recruitment there are issues with the panel, which have been flagged for many years. There are also issues with the length of time it is taking to recruit and get staff physically into posts. The process of actually getting staff is a major issue particularly when so many posts are available. We are competing with other sectors which can recruit people much quicker and we are losing people in the time that it takes to get him through some of the HSE recruitment processes.

There are also issues with pay and conditions for some staff, particularly those in section 39 organisations who are different from their HSE colleagues. This also impacts on recruitment. As Dr. Higgins said, there is a career pathway piece for clinicians. When we want to keep clinicians in services where they have built expertise, we lose them. Staff need development opportunities such as becoming seniors within services or building specialism in clinical specialist posts or advanced practice posts. It is really important that we can show what health and social care professionals can do.

The Deputy asked if the HSE is aware of it. The recruitment piece is probably recognised to an extent but the issue is with the retention of staff. The recognition of the culture for staff working in disability services is very challenging. Undoubtedly there is an impact for families and children too but if we want to keep staff, we need to recognise that culture. We need to look at why staff are leaving and how we can keep staff. Other reports have recommended exit interviews and looking at things like that. As a professional body we have spoken to our speech and language therapists about that. They have said that the structures in place in those disability services are impacting on them staying in those posts.

The Deputy asked what specialist pathways have not yet been published or implemented. The priority ones for speech and language therapy relate to augmentative and alternative communication, and also for feeding, eating, drinking and swallowing difficulties. For disability services and for PDS it has been happening for many years. Policy documents are meant to be coming and staff on the ground are hearing that they are coming. We need agreed action and completion on strategies and policies. They do not just need to be published, but we need a plan to support the implementation of them nationally so that services are equitable and streamlined and the same processes are happening throughout. There needs to be a more strategic oversight on those.

Ms Rosalind No?l:

I wish to reiterate what my colleagues here have said on that career pathway for occupational therapists as well as speech and language therapists and psychologists. The posts being designated to the CDN teams seem to come through into very piecemeal drip-fed way.

We need to look at the structure and what is needed in each team as regards how many occupational therapy posts, speech and language therapy posts or psychology posts are needed for a team. There does not seem to be any co-ordinated thinking through of the issues related to the filling of posts. It can be hard to attract people to a team when they know they might be the only clinician in their field because there are no others. That makes it hard to attract people.

I will comment on the AON piece. It has been found that when intervention and access to services is working well for families, the need to go down the assessment-of-need route decreases. PDS changed access to services as it not diagnosis-led. A diagnosis is not needed to access services. That is what is happening on the ground. Children and families access services without a diagnosis. The assessment of the child and a relevant diagnosis can and does happen in a fluid way when the system is working well. When it does not work well, families will push for what they can, services that have a legal framework. There is no legal framework for the provision of intervention so there is a real mismatch. Families are looking for intervention. Diagnosis is important for accessing appropriate education placements and for children trying to access early intervention, such as preschool and national school specialist classes. That is when it is necessary to understand what a child's needs and disabilities are. People are then trying to fight a system that is backlogged with intervention and assessment, all being completed by the same people who are very few on the ground.

Mr. Odhr?n Allen:

Deputy Collins is asking a question that picks up on what others have asked today. We are coming back to the same issues, AON, PTA, how the services are delivered, children on waiting lists, families being frustrated and so on. I will zoom out a little and talk about the top-down and bottom-up approach I feel is needed. All these issues are symptomatic of a bigger problem. Health and social care professionals, HSCP, are the poor cousins in the health services. As regards top-down approaches for the State, we need to see HSCP leadership in Departments. We do not currently have health and social care expertise in the Departments of Education; Health; or Children, Equality, Disability, Integration and Youth. We need them. We have medical and nursing colleagues in Departments. It is necessary. Why do we not have health and social care professionals? If we do not have top-down leadership and planning for the State, we will run into operational difficulties down the road. That is necessary as one top-down measure. I would also argue that it is clear from all these issues that we need a HSCP cross-departmental strategy. Many of these issues are affecting many of our citizens. Today we are focusing on people with autism but many other people are affected by this lack of leadership and lack of joined-up thinking. We need a HSCP strategy that is cross-departmental.

With respect to bottom-up approaches, I echo what colleagues have said. We need consultation. When services are being delivered in a manner and local policies are in place that are forcing occupational therapists, speech therapists and psychologists to work in a way that is unethical, the system is broken.

That has happened in the roll-out of PDS with the PTA. It was unethical to force therapists to practise in a way that went against their code of ethics and to force them to do an assessment they knew was not the assessment they would otherwise carry out. There is something wrong with the system. Services cannot be designed without consultation with the professionals delivering them and, as members are hearing, that is persisting to this day. We do not know what is happening. The professional bodies have not been consulted. We represent clinicians and therapists on the ground. The unions are consulted but, with all due respect, they are unions and not professional bodies. They do not represent the professions. We need consultation with the professions, therapists on the ground and professional bodies, as well as people with autism and their families. They need to be at the centre of the model of service delivery.

At another forum recently I used the analogy of a supermarket. Many people say they do not like to go into one supermarket or other because it does not stock what they want to buy, treat them well or give them what they need. It would be hard to understand how management in such a supermarket would dismiss what people are saying and say their service is fine and their supermarket is great. Unfortunately, with the health services, people do not have the choice to go elsewhere. Many families cannot afford to go privately. Some are forced to and, luckily for them, can afford to do so. The majority of citizens are dependent on our public health system and do not have the alternative to go a private route. They are denied basic services. We need to design our services with adults and children with autism and their families at the centre. They need to be consulted. If they say, as the majority of families are saying, that PDS is not working, they are right. The service is for them. If they say it is not working, we have to listen.

There needs to be a significant increase in the percentage of the health budget spent on disabilities. It is ridiculously low. I think it is something like 2% or 3%. I know everyone is looking for more budget but our citizens with disability deserve better and the State can do better.

To summarise, top-down, we need leadership of our professions in Departments and a joined-up strategy, because many of these issues cannot be dealt with piecemeal; and we need a bottom-up approach where there is consultation with people and therapists and an increase in the budget. A joined-up framework is needed because many of these issues will persist. I am not optimistic about solving these problems in the next two to three years because we will not find the therapists. We do not have enough occupational therapists, speech therapists and psychologists in Ireland to provide for the current need in our health services, never mind the projected increase. We will not fill that gap, I am sorry. We can try to fill it from abroad but other countries face the same problem. It will continue to be a challenge for us but there are practical things that could be changed today to make a difference to families, children and adults with autism and to therapists on the ground, if only families and therapists were listened to. That is my call.

Micheál Carrigy (Fine Gael)
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Has Mr. Allen never been consulted, not even through his organisation?

Mr. Odhr?n Allen:

It would be wrong to say we are not consulted but we do not know where AON is at. We have not been invited to a meeting with the HSE, nor have other professional bodies. I am assuming with regard to PSI and AISLT, we have not been invited to a meeting to be asked for our thoughts on AON or our views on how things should be going forward. There is a level of consultation with some practitioners but they are not necessarily members of the professional bodies. We think there should be consultation with the professional bodies on how PDS is being rolled out, how AON will be approached and wider issues. It is a basic thing to ask to be consulted on the design, delivery and review of health services and that representative bodies for the people delivering those services be consulted. We do not think it is a big ask. It reflects what it is wrong in the system that we are not routinely invited into the room and listened to. We do not mean these perfunctory tick-box “Oh yes we met with them” engagements. We have had plenty of those. They are not very satisfactory for either party.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Good afternoon to our guests, who are all speaking a lot of sense. This is an issue I encounter in my constituency on a weekly, almost a daily, basis. Families tell me their children are on the waiting list for an assessment or if they have had the assessment, they are waiting for services. I am from Cavan and the team there are not giving dates to parents for children to get services, which I think is illegal. They are saying they cannot supply a date. Staff are leaving. Our guests have dealt with many of the issues in respect of the recruitment and promotion problems. The problems with registration were also mentioned, which I assume was a reference to CORU, which is another body that is under-resourced. My concerns are for the children who need those services now. Even if we increase the number of people going to college to take up all of these professions, it will take a number of years. Do our guests think the PDS model could work if it was properly resourced, better funded and fully staffed?

The model has been on paper since 2014. It was rolled out over 2020 and 2021. CDNTs were set up. The teams that were taken over already had waiting lists. Professionals have told me they could not understand how it was going to make a difference because we have waiting lists and the new approach was just going to compound them. Our guests have also dealt with the lack of leadership and consultation. Could the PDS model work? Is there a role within education? The UN Convention on the Rights of Persons with Disabilities, UNCRPD, requires inclusive education. We are not meeting that requirement at the moment. Inclusive education means that all children attend the local school except those with the most profound and complex disabilities. That is not possible now because schools are not properly resourced. They do not have enough special needs assistants, SNAs, or teachers. We need people from our guests' professions to work in the schools. That was happening in some of the special schools prior to the PDS model. They were then withdrawn. It was expected they would return but that has not happened, or not in all cases. What are our guests' opinions in that regard? Is working within schools a good model? I know the social inclusion model is slightly different from the preschool model. I would be interested to hear the thoughts of our guests on those matters and how best to progress them. We are going to have to properly resource our education system to ensure an inclusive educational process for children.

Another issue that has been brought up at the committee on a number of occasions is the rapid prompting method. I have read our guests' submission on that point and respect their professionalism and analyses. Some parents have seen such a model work for their children. Perhaps they did not have access to other models to see if they would work for their children or those other models did not work. Is there any role for the rapid prompting method, even to allow a child to begin the communication process? Our guests' concern is that it is not the child or young person's own communication because they are being prompted in a certain way. Is there a role for it even as an initial step to getting to a better model, as such?

Ms Rosalind No?l:

The Deputy asked if the PDS model is working. The PDS model is based on a child- and family-centred approach. We feel that is a very good start for a model. We agree with that approach. However, it has not been implemented in such a way as to allow us to work within that model. Prior to the PDS, there were waiting lists and many of them were not recognised or audited by the HSE. When the PDS model was introduced, many more children appeared than had been expected. That is clear from the numbers. When the teams were reconfigured, the HSE had figures in mind as to how many children would be going to those teams.

All of the teams had significantly more children than had been expected so there is a planning issue there. Why were they so surprised by the numbers of children who came on to the disability teams?

On schools, from an occupational therapy perspective, we work with children and their families within the setting where they are functioning which includes home, school and community. We would work with children in all of those settings and still do. Therapists are working within the special schools at present, although not in the numbers needed. Children who are linked to disability teams have access to the very few staff who are on those teams, whether they are in a special school or in the community. Children are being seen but again, not at a high enough level. From an occupational therapy perspective, we agree with the principle of having occupational therapists in all schools.

Ms ?ine Lawlor:

In response to the question as to whether progressing disabilities is working, we would agree that the model which focuses on the child and takes away access based on a diagnosis is a good model. The issue, as the Deputy said, is that it has been in place for so many years but is still not fully implemented. It has not had the policy backup and funding required. We can have a policy but if we do not actually implement and audit it, we do not know if it is effective and doing what it is meant to be doing. That is the state we are at with regard to PDS. Even to start to audit it, when we know there are such fundamental issues with the set-up and roll out of the programme, is a challenge. We need to go back and look at what is happening and really target some of those structural issues underpinning the set-up of PDS. At its heart it is a model that supports the child and we all support that.

On the rapid prompting method, RMP, the IASLT, as we outlined in our submission, advocates for the robust assessment and use of augmentative and alternative communication, AAC, for children. We support systems that can appropriately support a child and evolve over time with children to allow them to access school, home and their community and that needs to be a really robust AAC. It might be a whole variety of AAC that a child uses. A child might use some gesture with family, use a device in school and might have a communication book or board when outside. It is not just one device or one strategy and it needs to be a system that a child can use in school that can support him or her to learn language and learn how to communicate. It needs to support children's communication interactions but also help them to develop literacy and access education. Based on current evidence, members of the IASLT and our international colleagues would advocate for other methods of AAC. When we have restricted budgets with which to support children, there are more effective methods that we would advocate for over RPM.

Ms Maria Gleeson-Cary:

On the issue of schools, we advocate for and strongly support the return of speech and language therapists to special schools but we would be very clear that it should not impact on the resourcing of, or service delivery within, the children's disability network teams. Again, in terms of equity, all children who require a speech and language therapy service, whether they are in special schools, special classes or mainstream classes, should have access to that service. We would agree with the Deputy's point about a rights-based approach around Article 24, which is very clear about the need to support an inclusive environment. Here in Ireland and internationally there is a lot of evidence about different pilot schemes and programmes that have been put in place already. We have the school inclusion model, the ABC programme, the therapy in school demonstration project and we have speech and language therapists as part of the regional support group for the NCSE.

There is a lot of evidence to show the effectiveness, positive outcomes and importance of having speech and language therapists and occupational therapy in schools. We need to move from pilots and programmes to a national strategic plan, again with timelines and somebody actually following through and it not being piecemeal across the country.

Dr. Louise Higgins:

I echo what my colleagues said about PDS. It is about a lot more than resourcing, but even to start with resourcing, we all feel the mapping exercises did not get the figures right for setting up teams or projecting. There has been an increase in the need for access to services. In addition to resources, we are looking at support for staff. We have all talked about how challenging a working environment it is for therapists. With PDS, there was a dismantling of some supports for front-line clinicians, which needs to be looked at, particularly if we are trying to attract people back or keep people in posts. As my colleagues said about support pathways and access to specialist supports, one of the challenges with PDS was the dismantling of a number of areas of support. While PDS makes it equitable, there were areas of expertise, many of which got lost within PDS. For many staff working on the ground, it feels like those clear pathways or policies are not there to support a PDS or CDNT to function. I echo what others said about reviewing that. We need to put families and children at the centre.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Are educational psychologists under the remit of the Psychological Society of Ireland?

Dr. Louise Higgins:

Yes, absolutely. That was the other point about schools. Educational psychologists are in schools through the National Educational Psychological Service, NEPS. It provides supports to schools. Regarding the EPSEN Act and the review, there is no doubt, if that is to be implemented or realised, additional resources will be required to support inclusion. Adam Harris has spoken very well about the point that it is not just about entry to a building but also about what happens within that building and having a level of support. It needs to be clear that there is no one size fits all because we look at autism as a spectrum and the diversity within that. It is about supports being individualised and flexible to support people when and as they need. That presents challenges, as a range of supports needs to be considered. Certainly, accessing clinicians and drawing on clinicians will be important in those settings.

Regarding special schools, as was said, there has been a lot of back and forth about who is supporting and how they are supporting. The challenge for many clinicians working in PDS is the idea of being split into so many pieces. There is the assessment of needs, AON, piece, the special school piece and all the other pieces they have to do. The assessment and need report explained this very clearly by stating that for years, services have been underfunded for the most vulnerable in our population but also expecting that therapists can perform the miracle of the loaves and fishes in terms of the increase in demands and reduced capacity. That certainly needs to be examined. It is not to pit areas against areas but rather looking at protected resources for areas.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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There are not enough NEPS psychologists, and that is an obvious statement. Some schools do not have access and they use the scheme for the commissioning of psychological assessments, SCPA. They seem to think they are limited to perhaps one assessment a year, which is not sufficient if there are a number of children in a school who require assessment, whether it is moving on to secondary school or for other issues.

It is also an area that is under-resourced. We need more National Educational Psychological Service, NEPS, psychologists.

The teachers and teachers' unions are concerned about the educational assessment part of the assessment of need, AON, process, which has been highlighted recently. Suddenly, they are being told they must provide the information for the National Council for Special Education, NCSE, to assess it. There is a concern there as well. If there will be an increased workload on teachers and NEPS psychologists, that needs to be looked at as well and properly resourced. Who should be doing that?

Dr. Louise Higgins:

It would be a good place to start. At present educational psychologists are not funded. They are working in the education system. Increasing the places and funding their training will be a step in the right direction.

Micheál Carrigy (Fine Gael)
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The last speaker - I will let him in before myself - is Deputy Ó Murchú, who is not a member of the committee. The Deputy is a guest but he is at nearly every meeting because he has a strong interest in this area.

Ruairi Ó Murchú (Louth, Sinn Fein)
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I appreciate that, Chair. I was running late from a meeting on the previous occasion. In fairness, I was going to send a question through but it was dealt with. That is the nicest thing I will say about anyone during the whole of this week.

I will break this up into two areas - assessment and therapies. I will paraphrase or synopsise, and the panel may correct me if I am wrong in what they have said. The assessment of need takes approximately 37 hours. The HSE will state not everyone requires this but, as has been said previously, there will be financial ramifications for certain families. There will be schools that will want it done, etc. Therefore, there is not a family that does not want it done. We all know what the law states in relation to it. The preliminary team assessment, PTA, was entered into and it did not cut the mustard at all. The HSE or certain people within the HSE even here would say not everyone requires - take the law out of it - the 37 hours. What is required, because there was talk about diagnostic pathways and whatever else? I am just wondering what the perfect system of assessment should look like.

Beyond that, we are talking about therapies. We all know we will not have enough of any of the skillsets that those on the panel have in the near future. We all know there are foreign recruitment drives and there is robbing and stealing of capacity from the private sector. All that should be done, and the more, the merrier.

The likes of the Minister, Deputy Harris, have said that workforce planning is kicking in and that, let us say, in four or five years, we will have the capacity. I ask for an answer in relation to that. Even if that is the case, we are looking at four or five years where we do not have the capacity.

If we could deal with the issue of the assessments, then it probably falls into what some of the questions have been about as to whether we would be as well to have occupational therapy, OT, speech and language therapy, SLT, and psychological services in schools because that is where some of the need is.

The panel already dealt with some of the silo issues but I want to return to it. Many parents come to me to talk about autistic children with anxiety, and they try to get this dealt with. I am not sure that they particularly care where it is dealt with. I am not sure that they really want child and adolescent mental health services, CAMHS, but they get sent to CAMHS. CAMHS says the child is an autistic child and he or she does not fit the criteria for the service, and back the child goes. The others say that they cannot deal with this because it does not fall under their remit. I accept that may also be partly the result of services that are all under pressure but none of it is working. If we could start with that, and deal with it, it would seriously reduce the amount of work we will have to deal with.

Micheál Carrigy (Fine Gael)
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We might start-----

Ruairi Ó Murchú (Louth, Sinn Fein)
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Start at the top; finish at the bottom.

Micheál Carrigy (Fine Gael)
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-----with Dr. Higgins on this one.

Dr. Louise Higgins:

In response to the Deputy's question around assessment and the PTA, the Psychological Society of Ireland, PSI, has developed updated professional guidelines on assessment of autism in children and young people, which is what we are talking about here. Since we know autism is a spectrum that is present at all ages, all cognitive abilities and language abilities and with co-occurring conditions, and because of the level of diversity within the autism spectrum, we are clear it is not a one-size-fits-all approach for assessment, but also for supports.

However, there are key components to an assessment. If we think about best practice guidelines, the key components are around there being a team approach to an assessment, reference to a classification system, and around the selection, use and interpretation of standardised measures. Given the variability of presentations, another key component, is having experienced clinicians. If those ingredients are put together, that is what we are saying are key components to an assessment. As I said, it is not a one-size-fits-all approach. The Psychological Society of Ireland, PSI, argues that there is a set time for completing an assessment. Some assessments could be completed after a lengthier period and others may be completed more quickly. I want to be clear on this point; the preliminary team assessment, PTA, had very few of those, what we call, good key elements. There was no use of standardised measures so it was effectively a screening assessment that could not have met the criteria of doing what we know is best practice around giving a clear comprehensive assessment, identifying a child's difficulties and differences, and planning out the supports. Does that address the question?

Ruairi Ó Murchú (Louth, Sinn Fein)
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I get it. It was always going to fail and fail miserably because it was never fit to do what it needed to do. I get that we are dealing with a wide range of-----

Micheál Carrigy (Fine Gael)
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We will take a break for five minutes to reset the microphones.

Micheál Carrigy (Fine Gael)
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I will let Deputy Ó Murchú back in for further questions.

Ruairi Ó Murchú (Louth, Sinn Fein)
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Obviously we dealt with some of that before the sound echo issues started. Dr. Higgins has given the answer in relation to the PTA in particular and the fact that the assessment procedure is not straightforward. The same sort of assessment procedure, no more than the same sort of therapy procedure, will not work for every individual case. What is the best case assessment scheme, for want of a better term? How do we deliver therapies at this point and what are the best means of doing that, while taking into account the fact that even if we have the workforce planning piece and all the pieces as regards conditions in place over the next four or five years, we are talking about a period of time where we will not be able to fill all those positions?

I will talk about the difficulties families have come to me to speak about, such as silo issues. They cannot access solutions for particular problems because they are told it relates to CAMHS or whoever. We all know of the issues on everything from primary care to disability services and mental health services.

Dr. Louise Higgins:

With the legal ruling, PTAs are suspended and no longer happening. Clinicians-----

Ruairi Ó Murchú (Louth, Sinn Fein)
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I accept regarding assessments of need that there is a legal framework and that has to happen. Taking the law out of it, what is the best case scenario we could be looking at? Maybe it is the AON exactly as it exists.

Dr. Louise Higgins:

Colleagues have raised the Disability Act and it does need to be reviewed. The language used is not in recognition of the social model of disability or neurodiversity. That needs to be taken into consideration. I think sometimes AON has created a situation where assessment becomes this bad thing and is pitted against intervention. We argue that assessment is an important part of understanding an individual's needs and identifying the appropriate supports. PTAs are suspended, thankfully, but we are trying to get back to where we were.

Clinicians are completing AONs as they would have previously. I understand there are interim clinical guidelines around AONs. As Mr. Allen explained, they are interim so we and other professional bodies have not been consulted around those. Assessments need to happen and we would want to be consulted so we do not have another situation of things having to be redone, wasting resources and children’s and families’ time. That is probably the most important thing we have to say around assessments.

I agree on children and adolescents. It is a spectrum. Some children and adolescents could be well supported at primary care. Some will need the support of a CDNT and some of CAMHS, and some may need a combination of those. As I outlined in the opening statement, there is an agreement in principle and a policy around shared care in the HSE but it often is not implemented or there is huge variation in its implementation. That needs to be in place because there are children and adolescents who will need both services. Does that answer the Deputy’s questions?

Ruairi Ó Murchú (Louth, Sinn Fein)
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Given the imperfect world in which we do not have sufficient capacity and will not have the capacity we want, what can we deliver in the interim? When can we have a straight conversation with parents on what we can offer them that is not absolutely failing their kids, which it is at this point in time?

Dr. Louise Higgins:

The key issue is not to compromise and result in bad practice, which is what PTAs were. We would be in agreement that if families apply for an AON under the Disability Act, they should get it done in a comprehensive way in line with best practice and intervention and supports should be individualised for the young person. Mr. Allen outlined that we are in a grim situation with resourcing, and that is why we are pushing forward.

Ruairi Ó Murchú (Louth, Sinn Fein)
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I will ask that across the board. What is the best we can do in such circumstances? The question on assessments is probably dealt with but does anyone want to come in on that?

Ms Maria Gleeson-Cary:

What is an assessment? People get caught up in pedantics around how many hours or needing it for school placement or domiciliary. Actually, it is the start of intervention.

Ruairi Ó Murchú (Louth, Sinn Fein)
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It needs flexibility given that it-----

Ms Maria Gleeson-Cary:

Exactly.

Ruairi Ó Murchú (Louth, Sinn Fein)
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Ms Gleeson-Cary is asking for her association to be involved in that review because otherwise we could end up with more of the same.

Ms Maria Gleeson-Cary:

Absolutely.

Ms ?ine Lawlor:

When we think about intervention - that is the piece when assessment is legislated - that is where the resources get pulled. For many years with disability services there have been more court cases so we pull more of our already limited intervention resources into assessment. We then create these big gaps where we have this highly time-intensive assessment but with nothing to follow it for people. They then again need to await another assessment to start intervention. We have created this cycle. We need to target that key piece in order to be able to deliver therapy to people.

Ruairi Ó Murchú (Louth, Sinn Fein)
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People imagine somebody coming in on a white steed being able to save the day in a medical way.

Ms ?ine Lawlor:

That is it. How can we support those families? Under PDS there was the establishment of more shared care and arrangements about how we link for children. Quite often children and families are sitting on multiple waiting lists for multiple services. We need an ease of access to services so that they are not sitting there waiting for things, that they can transition between services and that a child who may have a diagnosis of autism and have mental health needs can have the services that are appropriate to them working together to deliver the care they need. It is not a huge ask. It just requires services coming together and being mandated to work together to deliver that shared care.

Ruairi Ó Murchú (Louth, Sinn Fein)
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It is that the care is aimed at the child and it is not a service saying, "No room at the inn here for reasons X, Y and Z." Parents generally just want the means to deal with a particular issue. If that is anxiety or whatever, they do not need to be passed to CAMHS; they just need a solution.

Ms ?ine Lawlor:

Where that policy has been implemented, it is starting to work for families and they are not being turned away from a service because that should never happen for children or families accessing services. We work in our health system and know they are coming to access a health service. That is one of the pathways that needs to be implemented. If we think about what could happen to support therapy and intervention for children in disability services immediately without additional resourcing it is that piece around support for clinicians and pathways that we have spoken about. Without that we have some services trying to implement it and others trying a different approach to implement it. We need a standardised basic intervention that the CDNTs can offer and which can be delivered to families. There are definitely resourcing issues and that will change the levels and amount of care - the ideal care we would like to provide with our basic interventions that all CDNTs should be providing.

Ruairi Ó Murchú (Louth, Sinn Fein)
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It is the same. It is flexibility within the service and ensuring that the professional bodies are involved in the conversation about the service delivery.

Mr. Odhr?n Allen:

There are so many things I could say. In our opening statement, we spoke about the need for collaborative thinking and new practices - what can we do for these families now. We all acknowledge that we do not have enough therapists to meet the need. There will be a period of three to five years if we do all the right things. Right now, we need to get all the right people, including the professional bodies, around a table in a room, and engage in collaborative thinking about what we can do now with the finite resources we have.

Are there things we could do that may make it a little easier for families? Are there things that might make the system work a little more efficiently? What could we do in the coming few months if we had this amount of money? When we were talking earlier, I used the analogy of increasing the population by X%. If the new hospital is not built, there will be delays in accident and emergency departments. Part of that analogy is that we cannot magic the service out of nowhere.

Ruairi Ó Murchú (Louth, Sinn Fein)
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However, professionals will find ways to make it work, as happened-----

Mr. Odhr?n Allen:

We could find ways to make it work. That is why in our opening statement we talked about collaborative thinking and new practices. W all need to get into the room and work together. Unfortunately that has not been the approach. The national clinical programme for people with disabilities points out there are three legs to the stool of the HSE. It has a remit for developing or designing the clinical programme for how HSE clinical services will be delivered to children and adults. However, it states that the two other legs of the stool are beyond its remit. One is operations, which is outside the clinical programme's remit, and the second is resourcing or the budget. Those responsible need to be brought into the same room as the professionals. The three legs of the stool need to talk. A forum should be created to include those responsible for design, operations and budgets, representatives of the professional bodies and clinicians who are on the ground. Why do we not create such a forum sooner rather than later?

Ruairi Ó Murchú (Louth, Sinn Fein)
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That is a request. It would be fair to say that it is frightening that has not happened in some shape or form.

Mr. Odhr?n Allen:

I will put on the record that I think everyone working in the HSE, including management and clinicians, has the best intentions and is trying their best. It is a difficult situation. If I were doing the job of one of the executives or senior managers in the HSE, I would find it challenging in this situation. We must have empathy for the position everyone is in, not only clinicians.

Ruairi Ó Murchú (Louth, Sinn Fein)
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I understand that no one is trying to make it worse. Most-----

Mr. Odhr?n Allen:

Having said that, we can do some things better and we must do so, such as ensuring the three legs of the stool are in the room. There is no point in having those responsible for design but not those responsible for budgets and operations.

Ruairi Ó Murchú (Louth, Sinn Fein)
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The stool would fall over.

Mr. Odhr?n Allen:

Yes, that is what is happening. The stool has fallen over.

We are not opposed to standard operating procedures, SOPs. Most health services internationally are developed with SOPs. We are opposed to SOPs that put something meaningless in place that compromises basic standards. Part of the problem we are trying to deal with is in the legislation. The Act provides for an entitlement to an assessment of need. It does not provide for an entitlement to the services to meet that need. Imagine that people who think they have broken an arm are entitled to go to the accident and emergency department. They get an X-ray and are told they have a broken arm and are then sent away. They are told pain management is not available, a cast will not be applied - "you are not entitled to that" as it were. That is an analogy for what we are doing with disability and the Disability Act. That needs to be reviewed. Ideally the Disability Act would have been reviewed in tandem with the Education for Persons with Special Educational Needs, EPSEN, review, but that is not happening.

Collaborative thinking and new practices can deliver some short-term solutions while we try to address the workforce planning issues. A number of our professions have accelerated graduate programmes through which a competent, ready-to-practice professional can be delivered in two years. We need to urgently increase the number of places for all professions. The accelerated graduate programme is one way to accelerate the production of graduates but there is no point in doing that if we do not address the clinical placement system. Practice-education placements - practical, on-the-job training - are important and our system is creaking at the seams. I will go back to what I said previously, that if we had a HSCP strategy the issues of workforce planning, clinical placements, recruitment and retention and models of service delivery and pathways could be dealt with in a joined-up way in that framework.

Ruairi Ó Murchú (Louth, Sinn Fein)
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That is fairly straightforward. I can see the Chair is getting worried or angsty.

Micheál Carrigy (Fine Gael)
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If we have time, the Deputy can contribute in a second round.

Ruairi Ó Murchú (Louth, Sinn Fein)
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I imagine the Chair will deal with the RPM piece, which I was going to revisit. We had Fiacre Ryan here at a previous meeting. I do not think any of the members is wedded to any technology or particular means or model that works.

The piece of work that Ms Lawlor talked about is grand and is evidence-based, but there are obviously systems which are working. What is being done in that field and what needs to be done?

Micheál Carrigy (Fine Gael)
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I ask that Ms Lawlor might answer that question, please, as the Deputy got his question in anyway.

Ms ?ine Lawlor:

We know as a profession that there are access issues for children and families to appropriate technology. We now know from an evidence base that there is not a prerequisite to giving somebody technology, either to support their communication or for people who are non-speaking. That can be to support to communicate but it can also be to help people develop a means of access to language and literacy. Access is difficult. That feeds into the lack of funding for devices for people, the difficulties without specialised pathways for augmentative and alternative communication, AAC, and we see that AAC has been a greatly changing arena in the past number of years. That is why clinical specialist posts for AAC are so important to allow and to direct clinical excellence in delivering those services.

When we look at somebody becoming a competent user of AAC, that is not just about giving them a device. It is not just about giving somebody an alphabet board or an iPad. It requires a great amount of support to implement it, both with the person themselves, within their environment - whether that is school or at home - and that is the focus that very much needs to happen on intervention. Most people who use AAC will use a whole array of methods to communicate. That is what we advocate and there is a very in-depth assessment to support people doing that. There are many different types of AAC out there for people which are effective and it is a great resource to get somebody supported to use AAC effectively.

When we look at the evidence internationally, our recommendation, as a professional body, is that we look at other methods of AAC support for people, and that we look at a funding mechanism which people can get easy access to, in order to try to use it much faster to find the right method and mode for them.

Micheál Carrigy (Fine Gael)
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Is Ms Lawlor speaking about other methods apart from rapid prompting method, RPM?

Ms ?ine Lawlor:

RPM is a strategy to teach somebody to use an alphabet board. We are saying that some people may use an alphabet board but they might also use things like an iPad or some Lámh or some signing; many people use a variety of these. RPM is a teaching method to teach somebody to use an alphabet board, to type, to spell or to communicate.

Generally, a more robust system will help somebody feel more autonomous with the effective use of a communicator. There are differences to that. It is a great spectrum of communication with respect to the needs people have. Some people will use the AAC device where they may have a totally adequate understanding and need it as their voice. Some people may need an AAC device that just has pictures, or they may work well with gestures. It is a great variety which people might need to use, to both build language skills and support them in using these and communicating with other people.

Micheál Carrigy (Fine Gael)
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Ms Lawlor mentioned resources and cost. To me, looking at it from the outside, if we train professionals to be able to teach and to go around to schools, I do not see that as expensive. We had Carmel and Fiacre Ryan here, and Ms Lawlor is well aware of them, but I have also seen in the local special school in my own home county, where the training has been done and was funded by the parents through fundraising, not by the State. There have been excellent results with the children who have started to learn this method. Does Ms Lawlor feel that the Government should support all methods, including RPM, as a method of communication where it has worked? We have had people in this very room where it has worked. It does work.

Any method that works should be supported to give the children that opportunity of communicating. Would Mr Lawlor’s organisation be in favour of even a trial being done in some of the schools to see how it works and what the results are? To me, it seems that it is being knocked again and again and that it is not acceptable to any organisation, yet it works.

Ms ?ine Lawlor:

It is important to look at what works. The submission we made to the committee looked at research that had been done internationally and how effective that was. There are issues with the research that goes into RPM. At the moment we can say we are advocating for people to have access to other, more effective methods of AAC. It is also important to recognise that the initial cost of a device or alphabet board is not very much but there is a huge time cost. Beginning to use AAC is often like learning a language. A huge time cost has to go into it, and there is a huge risk of abandonment for somebody. In terms, therefore, of giving somebody access to a voice and communication method, we want to give them access to the communication method that will be most effective for them, and give the most autonomous access to communication possible. It is going to evolve with them over time. Generally, what the evidence base says is that other methods are going to do that better. Of course, there are other individual cases going to come out but if we are looking at a funding or policy piece, we can say internationally that we are recommending other methods on that basis.

Micheál Carrigy (Fine Gael)
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Would Ms Lawlor not be in favour of the Department of Education funding that trial in a school, where we could look at the results in our own country?

Ms ?ine Lawlor:

There would be issues with that funding and the ethics for that based on the research that has happened to date, from a research point of view, in terms of the outcomes of it on a wider level. What we need, and what would be welcomed, is access to AAC, which is individualised and requires an assessment of a person's communication profile and what would work best for them. That is what we would recommend, and that is what we have seen being effective. There have been projects in the west where they have funded access to devices for people, as well as adequate assessment and intervention to help them use that. That has been very effective. Those are the pilots for which we are advocating.

Micheál Carrigy (Fine Gael)
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The word "silo" has been used a number of times by a number of people. That is where we are and that is where there seems to be issues. There are too many layers of administration across various Departments and not enough cohesive discussion. The Taoiseach is setting up a unit within the Department of the Taoiseach, which will be a cross-departmental group to discuss this issue. I hope that group will speak to today's witnesses, who represent professional organisations. It is only right as they are the foot soldiers on the ground who are doing the work. We will not devise or improve anything if we do not discuss it with the people who are going to implement it. I will put forward the proposal that the witnesses and their groups should be consulted and allowed to put forward their views on improving the situation. I am a strong advocate that the Disability Act needs to be reviewed. Mr. Allen used the analogy of having an X-ray carried out for a broken arm but then getting no treatment as a comparison with entitlement to an assessment of need with no follow-up. There is no entitlement to a service. I believe we need to review that. I have called for that and will continue to do so. I see at first hand, as a parent in my home area of Longford, the problems of staffing in the CDNTs. Last summer, 3.8 posts were filled in the county of Longford, which has a population of 45,230, for children waiting for an assessment of needs and with over 700 waiting for services. There were only 3.8 positions across psychologists, speech and language therapists and occupational therapy. The services had 0.8 of a physiotherapist and had no social worker. That has improved but over the past number of months, we are losing experienced professionals from the CDNTs, who are going to primary care. Positions are advertised in our CDNT and nobody applies. A position is advertised in primary care and everybody applies. People who are already working in the CDNTs are applying for those positions. In most cases, because of their experience, they will get the job. The figures in our CDNTs are getting worse with regard to professional staff. We are heading into a very difficult situation. I feel we need to look at the pay grades and the whole system.

I understand that someone may want to advance their grade of employment. It needs to be available within the CDNT to allow progress for any staff member working there so they can advance through that system and not have to leave or go to an outside organisation to be able to advance in their career. That must be put in place.

Regarding assessments and private assessments, we hear anecdotal stories about families getting private assessments, some of which are accepted by the HSE and some of which are not. Are there people promoting themselves as providing assessment of needs who are not qualified or clinically-qualified enough to give that assessment in this country? Will Dr. Higgins respond?

Dr. Louise Higgins:

With assessment of need, in certain situations, assessments completed privately are commissioned out, but the challenge is around governance issues when someone completes an assessment privately. Psychologists have not yet gone through the process of statutory registration with CORU, which speech and language therapists and occupational therapists have. It can be challenging for parents to identify who is qualified to do an assessment and who is not. PSI has a list of psychologists registered with it in terms of having a certain amount of experience and qualifications. It is challenging when families, as we know, are desperate to get assessments. Concerning assessments being accepted or not, that issue is not necessarily one that impacts access to services now because PDS removed the need for a diagnosis. There should be no barrier to people's access. We have heard of cases where there may be barriers in schools. A school might say that someone needs a more updated assessment, a fuller assessment or similar. We have heard of situations where that happened on the ground. It is a difficult one for parents, certainly.

Ms ?ine Lawlor:

There is also an issue that a parent may pay privately for an assessment, but because of equity in public services, they are still going to wait in a system for an assessment, if that makes sense. We already have huge inequalities in our services. We cannot have a system where a family is going off and paying privately for an assessment; despite their need to do that, they are skipping families who possibly are not able to pay for an assessment. It might be a case sometimes where families feel they have paid for that and they ask why they have to go through the process of waiting. It is unfair but there is inequity across the board in both of those things.

Mr. Odhr?n Allen:

I wish to respond to the question about PDS as a model. We are circling around the questions of whether PDS working, if it can work, if it is the right model, if it is failing, whether there are enough resources and what would make it work. It is important to acknowledge that if you take the right model and allocate the right resources but you do not engage in proper change management in moving from one model of service delivery to this new model, which can work, then it will go wrong. That is part of what is happening at the moment. There was no proper change management. There were specialist services for physical and sensory disabilities, autism, and so on, which were merged into children's disability network teams.

There was a lot of preparatory work that therapists on the ground were involved in. I am sure some of the people at the committee today were involved in developing intake assessment forms, policy documents and different protocols. All of those things were worked on for a number of years, but when go-live happened and all of the teams were reconfigured, none of this documentation was to be seen. People were just left. Nothing was in place. That is a failure of change management. No system, service or business can operate when you are implementing a major change and you do not do proper change management. Even with the right resources and the right model, if you do not manage the change properly it will not work.

That has to be acknowledged. There was a failure of change management. People were left floundering.

Then people were brought in who perhaps had never worked in particular areas and who did not have any or recent clinical experience working with children with particular needs. For example, some therapists may have had great expertise in physical and sensory disabilities but may have lacked experience or confidence in working with children with autism. They were thrown in as occupational therapists, speech therapists or psychologists to do the assessments. There was no continuing professional development. There was no training. That is what I mean by change management. Where there was a clear and robust framework for someone to work within, there was guidance and there was training delivered. None of that happened. People were just thrown in the deep end and expected, a, for example, an occupational therapist, to carry out assessments. What does somebody do where he or she has to carry out an assessment in respect of a complex situation involving a child and a family and where he or she has never worked in the area? Does he or she go on the Internet and look up, "How do I do this assessment?" That is the challenge that people have been facing.

It has to be acknowledged that there was a complete lack of change management. That is something that still needs to happen. Families do not know what this model can do. They need to be sold on what PDS can offer. Therapists need to be supported to deliver everything that PDS can deliver. Even putting all the posts in place and increasing the number of staff, you still need to provide the supports and the structures that can enable this change to happen and be successful.

Micheál Carrigy (Fine Gael)
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Mr. Allen mentioned experience. It was one of the recommendations from the committee that we put forward last November in the context of the summer programme, and the Department included it as part of the recommendations it made last week. That involved third level students in the various therapies working in the summer programme. From an experience point of view, this would involve them working with children with special needs. Maybe the panel would give their views on that.

We mentioned the school inclusion model. I think it is the way forward, but it seems to have stalled. It involves getting therapies in at that level and providing further training to the SNAs to be able to implement that on the ground.

Ms Maria Gleeson-Cary:

I can see the Cathaoirleach's point of view. We very much welcome the expansion of that programme. It is important to children with disabilities. The IASLT would be advocating for our therapists in training working as therapy assistants in the health service rather than in schools. It offers them experience of clinical training. It can offer them an understanding of the different areas of the health services. It can also help us to deliver services. We would be advocating for funding to be ring-fenced for us to use our therapists as assistance rather than in a school programme where the expectation might be that they work as qualified speech and language therapists when they are not. I suppose we would be concerned about that but we would love the chance to offer them more experience and to be able to use them in helping us deliver services more effectively.

Mr. Odhr?n Allen:

We would be strongly supportive of the roll-out of the school inclusion model. We have met with the Department of Education to discuss this matter. We do not think that the HSE is best placed to deliver what children in schools need. It is better to have a dedicated therapy service within the school setting. We would be strongly supportive of the roll-out of school inclusion services for children.

Ms Rosalind No?l:

I echo what my colleague was saying with regard to the summer programme, which used to be known as July provision. The programme is for those who have additional needs and is designed to ensure that they do not lose out on education. We are saying that we have a role within school inclusion, but that is as occupational therapists, speech therapists and psychologists. In the context of the scarce resources relating to students who are completing occupational therapy, speech therapy and psychology degrees, it is about them obtaining experience in those settings as opposed to in the context of the summer programme.

That is a very specific programme to which the Deputy is referring and schools are struggling to provide it because they are working throughout the whole year. We need to determine how we can keep the summer programme going and functioning.

Micheál Carrigy (Fine Gael)
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That programme is very important and the reason we highlighted it as a committee is that we saw the figures from 2022 which were alarming. Last year 14% of students in the approximately 130 special schools had a school-based summer programme but 3.6% of the 6,500 children with higher needs only got two weeks of a school-based summer programme. I am using percentages but we are talking about children and the statistics show that fewer than 100 children out of over 8,500 children in our special schools got four weeks of a programme. That is why we felt that it needed to be highlighted. We need to expand the programme and increase the number of professionals and student professionals working to provide the summer programme.

Mr. Odhr?n Allen:

According to our colleagues in the NCSE who are currently delivering occupational therapy services, there is scope to look at how therapists, if they were employed within the school inclusion model, could be involved in the programme delivery, rather than students. A lot of students would go away during the summer but there is that possibility, out of term time, that in-school therapists could be involved in supporting July provision in schools.

Micheál Carrigy (Fine Gael)
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I wish to raise another few issues before allowing my colleagues to come back in, one of which is administrative support for CDNTs. I have had this conversation in relation to other areas too, about solicitors, doctors and so on, having to type up reports and the significant amount of time that takes up. Would additional administrative support be helpful? Another issue is the training programmes for parents being rolled out by professionals. We met representatives of the Middletown Centre for Autism a number of weeks ago and we travelled to Armagh before Christmas to look at what is considered to be best practice. Should we be resourcing that organisation further so that its programmes can be rolled out across the country? In that way, the professionals could concentrate their efforts on providing services to the children.

Ms Maria Gleeson-Cary:

On the question regarding Middletown, it comes back again to what we have been saying about clear structures and streams of intervention. If there was a very clear structure nationwide whereby those streams of intervention were provided by Middletown, that would be perfect. We would know what is provided and would know if that was appropriate for somebody or not. Sometimes that kind of training is not appropriate for a family because there may be a language or an accessibility barrier but at least we would know what is provided and would know if it was appropriate for somebody. It is the lack of oversight and the lack of national streaming and structure that impedes us and limits our ability to use that and build on it. This all comes back to national policies, structures and planning of services.

Ms ?ine Lawlor:

We also need national models of service delivery.

On the question of administrative and IT support, that is a huge challenge for clinicians on the ground across our health service. There is a need for more, and more effective, administrative support across our health service because that can streamline what clinicians do and allow them to do clinical work. Outside of that, there is also a need for adequate IT support. I mentioned that we often have children sitting on multiple waiting lists and clinicians spend a huge amount of time researching and figuring out what child is accessing what service and what stage they are at in the process. Adequate IT support would streamline huge amounts of that work but we do not have that. There are plans around PDS IT supports but they are so far out for our service. Our service really is still working with pen and paper which takes up a huge amount of clinicians' time.

Joan Collins (Dublin South Central, Independents 4 Change)
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I was contacted by a parent and activist in the Dublin 12 area who argues that families should be given a grant to access services privately. Even though there are long waiting lists for private services and assessments of need, if and when cancellations come up, parents could access those services if they had a grant.

Would such an interim measure solve some of the problems around access to services or assessments?

Another important point is that the HSE has not been held to account. While I do not want to drag the executive down, it did not do things right in this area in the past, it must be held to account for that and we must make sure it does not happen again. That is the most important point. Our guests are calling for consultation, pathways and so on. It cannot be done as it was done with the initial assessments two years ago.

Ms Maria Gleeson-Cary:

On the question of private assessments, we are all awaiting the interim autism assessment strategy from the HSE. It will support private providers in how they structure their assessments so that we have some way of standing over them. I would hope that it will also include the experience and competence of clinicians doing autism assessments and reflect on how to build the experience of clinicians. There are lots of co-occurring conditions in autism and we need to ensure that the support needs of a person and an understanding of the whole person is identified as part of the assessment, that is not just an autism - yes or no - tick-the-box exercise. Ensuring that the autism strategy coming down from the HSE in terms of assessment is comprehensive and supports experience, competence and confidence across the board in autism assessments will support private providers in providing a neuro-affirmative assessment as well.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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We are talking a lot about assessments here. I am in favour of reviewing the Disability Act 2005 and putting services and therapies on a statutory footing but am concerned that the same problems are going to occur as with the assessments of need because we do not have enough staff. In that context, there will be more court cases.

A lot of parents look for an assessment of need which will give a diagnosis. They do not just want an assessment of need in order to access the services that a child needs but to get a diagnosis so that the child can get an appropriate school place. The Minister of State with responsibility for disabilities would say that children do not need a diagnosis or even an assessment of need and that assessment should be an ongoing process whereby as the child changes, his or her needs are assessed and met. However, the Minister of State with responsibility for special education would say that a child absolutely needs a diagnosis. We all know there are not enough school places and if parents want an appropriate school place for a child that they feel will not be sufficiently supported in mainstream education, then they need a diagnosis. Therein lies the problem - we have two Departments that are not working together to come up with an answer. If the requirement for an assessment of need, the end result of which is a diagnosis which is needed for a school place, was removed, would that relieve some of the pressure? Is there a need for the assessment of need process in every single case? We hear that the average time required for such assessments is 29 hours. That is only an average figure, which means that some assessments can take even longer. I totally accept that the preliminary team assessments were totally insufficient and were just a way of putting people on different lists but is a full assessment of need required in all cases?

Ms ?ine Lawlor:

It is very clear that where families have appropriate access to services and interventions, the demand for assessment of need goes down. We know that to be the case. We also need to think about why a family goes for an assessment. If a family has a child who is presenting with different needs or concerns, an assessment is part of understanding that. A family might look at different schools in the local area and decide which one they want their child to go to. Part of an assessment is looking at a child and understanding what supports are going to be required for the child and his or her family. As we said, it is that therapeutic process that goes into an assessment that families need. It is not just about the access piece.

I agree that we need the relevant Departments to collaborate so that those barriers are not there but there will be families who still need an assessment to determine what school placement might be appropriate and what supports will be best to help the child to fulfil his or her potential and live his or her lift in the best way possible.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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If there was a more inclusive education model, there would probably be less need for an assessment of need in a short period of time. We need to be assessing children on an ongoing basis because their needs change.

Mr. Odhr?n Allen:

The Deputy's question on whether an AON is always needed is not up to us to answer because people have a statutory right and entitlement. Why did so many families go the statutory route to hold the HSE to a timeline within which it must give the child an assessment? It was because of the lack of provision of assessment and intervention in paediatric disability services. PDS was to try to fix that. Here we are all these years later and it is worse than ever. Families will continue to go the statutory route because the alternative is to see their child languish on a waiting list. We will be dealing with this unfortunate problem where so many of the available resources, which are not adequate, are being put into doing AONs.

It points to the fundamental problem. We need to provide a better and better resourced paediatric disability service so we do not separate assessment and intervention. I think we all agree the best model is where there is no such separation. If our professions were able to deliver a gold standard service, there would be a fluid approach to assessment and intervention where you start assessment and intervention, and the intervention informs the assessment. It is not black and white. The worst thing ever was separating assessment from intervention. We are far off the gold standard service which is fluid and where professionals have the autonomy to engage in the appropriate assessment for a child or family and then try out particular interventions as they see fit, using their own clinical reasoning to make those decisions. That is where we should be trying to get to.

Ruairi Ó Murchú (Louth, Sinn Fein)
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Mr. Allen referred to assessment and intervention being one and the same thing. He has already referred to a review process to involve his organisation. In the short term, when we do not have the capacity to deliver everything, we can work out what we can deliver. Within that is an ask that there would be a forum to do that and that all the stakeholders would be there. That is the shooting match and the business end. If we could do that, everything else would fall into place.

On workforce planning, a promise has been made. There have been particular issues regarding psychologists. The witnesses mentioned some of them. They relate to cost, training and obstacles. Has enough work been done on that?

Dr. Louise Higgins:

No, it has not.

Ruairi Ó Murchú (Louth, Sinn Fein)
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I knew it, but-----

Dr. Louise Higgins:

There is still inequity around funding for psychologists in training. Educational and counselling psychologists are not funded. There are not sufficient numbers at present and projecting forward.

Ruairi Ó Murchú (Louth, Sinn Fein)
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We talk about delivering on everything. This is constantly talked about in the public domain but we never get to the secondary point of ceasing to mention it because the issue is dealt with.

Could I get some sort of submission in relation to AAC and best practice? In the best case scenario, what direction should we be heading in? The witnesses have gone through some of the detail, but could I get something more specific?

Ms ?ine Lawlor:

We can follow up on that. We presented previously around AAC. There are specialised pathways due to be finalised for AAC in progressing disabilities. There are streams and specialisms for that. We can absolutely submit something.

Micheál Carrigy (Fine Gael)
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Send it to the clerk and we will circulate it, and to Deputy Ó Murchú as well.

Ruairi Ó Murchú (Louth, Sinn Fein)
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On everything else, just better, quicker and faster.

Mr. Odhr?n Allen:

A small but important point concerns the section 39 organisations. There continues to be an inequity in the conditions of staff working in section 39 organisations. That is a factor in people leaving and something that can be fixed by Government immediately.

Ruairi Ó Murchú (Louth, Sinn Fein)
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There have been promises to do it and it has not been done yet.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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There was a promise in the budget.

Micheál Carrigy (Fine Gael)
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Some section 39 agencies have and others have not.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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We are told every time the HSE is having difficulty recruiting, as well as the section 39 organisations. They are trying to suggest it is not just a pay and conditions issue but-----

Mr. Odhr?n Allen:

It is not, but we need clarity and equity. I might be on the same team as somebody else but because my salary comes through a section 39 organisation, I have different terms and conditions of employment from my colleague. How can that be justified?

Micheál Carrigy (Fine Gael)
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I agree.

Ms Rosalind No?l:

Maybe that helps answer the question asked about why people from disability services are going over to primary care, which tend to be HSE-funded posts. That is part of the answer to that question, along with knowing what they will be doing in some of those services. There has not been the huge change there has been for those working on CDNTs. It goes back to change management, where you are trying to navigate a totally new service and way of delivering services.

Ruairi Ó Murchú (Louth, Sinn Fein)
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The requests for the forum are for that level of engagement. The Chair said he would talk to the Taoiseach to ensure the issues we are dealing with are put top of the agenda. That is necessary.

Micheál Carrigy (Fine Gael)
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I have found music therapy exceptionally good for our son. What are the witnesses’ thoughts on that helping with speech?

Ms Maria Gleeson-Cary:

I previously worked with a music therapist in one of our special schools. Supporting speech development goes back to the robust AAC assessment, but in terms of a therapeutic process and supporting people in processing what is going on for them, it is a really-----

Ms ?ine Lawlor:

Music therapists are valued professionals who work on this. When we talk about a gap in psychology, speech therapy and occupational therapy, that does not even include things like music therapists or play therapists, which are excellent in supporting skills development for children who are autistic or have other disabilities. There is a huge gap in developing those services.

Dr. Louise Higgins:

In looking at the composition of CDNTs, music therapists or other therapists were not considered as part of that.

Micheál Carrigy (Fine Gael)
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My own son’s verbal ability improved dramatically through a course of music therapy. I have seen that it works.

On my behalf and on behalf of the committee, I thank the witnesses and everyone who works in the professions. They are under strain. We need to acknowledge that and acknowledge the work done throughout the country, privately, through CDNTs and through the HSE. There are not enough professionals in the witnesses’ fields. There is much strain on the staff so it is important to put on record our thanks to them.

We will make recommendations to Government for changes in our report on 1 June. If the witnesses had one recommendation, what would it be? I will start with Dr. Higgins. Maybe I am putting her on the spot.

Dr. Louise Higgins:

Put me on the spot. That is fine. I will go with meaningful consultation. The biggest concern is about replicating mistakes of the past with the PTA, so meaningful consultation with front-line clinicians and professional bodies is important. Key to that is having the autistic community's voice at the centre.

Ms ?ine Lawlor:

Absolutely, and I would add to that an appropriate workforce plan that takes into account our current and projected staffing requirements and looks at a career pathway for staff so they can be supported to develop skills and to continue working in our profession and delivering excellent clinical services.

Mr. Odhr?n Allen:

I echo the comments on the importance of consultation with families, service users, autistic people and therapists. However, I go back to the fact that the overarching HSCP strategy can tackle so many of the issues, such as the workforce planning, recruitment and retention pathways, career development structures. I would also emphasise the importance of developing HSCP leadership within Government in order that we might obtain joined-up thinking across Departments. It is not really one thing.

Micheál Carrigy (Fine Gael)
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I thank the witnesses for their contributions. They have been extremely beneficial to all the committee members who have been here. I know others are watching the proceedings online as well. There are no other issues on our agenda today. We will adjourn until next Thursday, 2 March, at 11 a.m., when we will meeting in the Seanad Chamber for a round-table discussion on public concerns regarding services and supports provided by the State for autistic people.