Mr. Odhrán Allen:

We thank the committee for inviting the AOTI to this meeting to discuss the new standard operating procedure for assessment of need under the Disability Act 2005. This is an important matter and AOTI welcomes the committee's consideration of it.

The new standard operating procedure, SOP, for assessment of need was developed by the HSE to ensure a consistent approach to applications for assessment of need. It was due to be implemented from 30 April 2018 but this did not happen because of concerns raised by numerous stakeholders. In response to concerns about the document that were raised by our members, AOTI published a statement in April 2018 on the proposed SOP. I will outline a summary of AOTI's concerns.

First, I will give an overview of the assessment of need process. Part 2 of the Disability Act 2005 has been enacted for all children born on or after 1 June 2002. This enables parents, guardians or professionals to apply for an assessment of need under the Act.

According to the Act, and subsequently published regulations, the assessment of need, AON, must be commenced within three months of application and completed within a further three months.

Occupational therapists are often one of the key professionals in the AON process. Currently, the process is significantly impacting on available therapeutic resources for children. Occupational therapists are frequently required to prioritise AONs over other areas of practice, which detracts from time spent carrying out the non-statutory assessment of children and providing them with occupational therapy intervention. It is important to note that, while the AON will often result in the therapeutic, health or educational needs of a child being identified, it places no obligation on services to immediately provide the named supports. This results in children being placed on lengthy waiting lists for intervention when the AON is complete.

In a recent survey of 98 occupational therapists undertaken by the AOTI, the majority of participants reported a typical AON, including direct assessment, observation, information-gathering and report-writing can take a practitioner anywhere from two to 12 hours to complete, with the majority taking between four and eight hours. The variation in length of assessment is because of the uniqueness of each child and the need for varying levels of assessment depending on complexity.

Therapists reported that children are then placed on the occupational therapy wait list for further occupational therapy assessment and intervention when the AON is complete. Waiting lists vary significantly across the country. The majority reported it can take eight months to two years for further occupational therapy assessment and intervention to be offered, while just 30% reported that it would take less than fewer months. Some reported it can be significantly longer than two years. Participants highlighted the AON process is significantly impacting on the level of service occupational therapy services can provide and the proposed standard operating procedure will only exacerbate this.

The HSE's standard operating procedure for AON was developed with the intention of ensuring a consistent approach to managing requests for a statutory assessment of need and processing the resulting referrals. Contrary to what is stated in the standard operating procedure document, the AOTI was not consulted during the initial drafting of the standard operating procedure. Neither has the association been sent a copy by the HSE. We do recognise the need for standardisation of AON processes. We are keen to work with the HSE to achieve a process that best meets the needs of children and their families but one that is evidence-based and that is in line with ethical and best practice. We cannot, however, support the standard operating procedure as it has been presented for the a number of reasons.

The reconfiguration of children's services has not happened in all community healthcare organisations, CHOs, which is a prerequisite for the standard operating procedure to work. Reconfiguration allows children to access needs-led multidisciplinary services in their locality if they present with complex needs, regardless of diagnosis. Non-configured areas continue to operate on the basis of diagnosis, leaving many children with undiagnosed complex needs without adequate services.

The absence of reconfigured teams in most areas means many therapists are working in a uni-disciplinary manner and have no, or limited, access to other professionals which would enable them to complete the preliminary team assessments proposed by the standard operating procedure. Currently, just two of the nine CHOs in the State are fully reconfigured with children's network disability teams.

The SOP has been introduced against a background of under-resourcing of children's disability services nationally, where there are lengthy waiting lists to access services and further waiting lists for intervention. Related to this is the lack of resources in children's disability services to ensure timely diagnosis and intervention where a disability has been identified through the AON process. The SOP will, therefore, further restrict the provision of paediatric occupational therapy services.

To illustrate the reality of this, we wish to share an example from one non-reconfigured service in the south. This disability service took over part of the provision of autism services in its area 12 years ago. At the time of the establishment of this new autism service, 50 children were transferred into the service and one whole-time equivalent occupational therapist was allocated. Some 12 years later, there are 1,000 children linked with this service with only three whole-time equivalent occupational therapists. The HSE's own recommendation is that there should be a ratio of 1.5 whole-time equivalent occupational therapists per 100 children with a disability. This means that where there should be 15 occupational therapists, but there are only three.

The current reality of a child referred to this service involves a preliminary screening occurring prior to the child entering the service and an indication of an autism diagnosis is highlighted. A diagnostic assessment is then completed within 2.5 years of application, following which a diagnosis of autism, if present, is confirmed within six weeks. If the diagnosis is confirmed, the child will then be placed on waiting lists for further interventions. In the case of occupational therapy services, the waiting list for further assessment or intervention is more than 12 months. A child has to wait up to 3.5 years for occupational therapy intervention.

If this service introduces the standard operating procedure within the current system, a third layer of waiting lists will be created prior to diagnostic assessment. This will create further delays in referring children for diagnostic assessment. Without a diagnosis, children with autism risk losing out on places in special autistic spectrum disorder, ASD, units in schools and children with autism in mainstream education will be unable to obtain access to special needs assistance. This may prevent some children from accessing education at all, which is a breach of their constitutional rights. As a result of the additional demands the SOP will place on the under-resourced autism service in the south, it is considering suspension of all therapeutic services in order to be able to meet these requirements. There simply will be no capacity to provide occupational therapy intervention and children will be placed on waiting lists for occupational therapy indefinitely.

The standard operating procedure proposes only a 90-minute timeframe for assessment. As noted previously, the majority of occupational therapists currently spend between four and eight hours per referral for an AON. The 90-minute assessment timeframe proposed by the SOP does not afford the therapist time to assess the child across a variety of environments, such as school, home and clinic, which is considered best practice for comprehensive assessment. Initial meetings with services can also be anxiety-inducing for families and children. This is likely to impact on the child's presentation and, potentially, the outcome of the assessment. In addition, the 90-minute timeframe creates a risk of over-reliance on short observations, paper screening and parent report to guide clinical decision-making. A fixed 90-minute period for assessment does not allow an occupational therapist to gather all the information they may need to make a proper assessment of the child.

The standard operating procedure requires clinicians to identify, after a 90-minute assessment, whether the child has a permanent disability that warrants further assessment in order to confirm a diagnosis. It also requires that therapists provide strategies to parents and carers by the end of the 90-minute assessment. The AOTI is concerned this places significant pressure on therapists to make an important decision with what may be limited information, resulting in potentially inappropriate referrals to diagnostic services or provision of inadequate and potentially harmful intervention strategies to the parents and carers. Occupational therapists can only provide intervention strategies when they have completed a full occupational therapy assessment. The AON is not an occupational therapy assessment. Accordingly, the approach outlined in the SOP is lacking an evidence base and will compromise safe and ethical practice.

The procedure places occupational therapists in breach of the code of professional conduct and ethics for occupational therapists of the Health and Social Care Professionals Council, CORU. Among the many requirements in the code, it states that therapists must act in the best interests of service users; treat each service user as an individual in a client-centred manner; respect and, where appropriate, speak out on behalf of service users; communicate sensitively and effectively with service users, taking into account any special needs when communicating with children; carry out their duties and responsibilities in a professional and ethical way to protect the public; be responsible for any service or professional advice they give; be able to justify any decisions they make within their scope of practice and that they are always accountable for what they do, what they fail to do, and their behaviour; meet professional standards of practice and work in a lawful, safe and effective manner; and be an advocate for service users.

Each of these requirements is compromised by the proposed SOP and this places occupational therapists in direct conflict with the requirements of the CORU code of professional conduct and ethics for occupational therapists. That is a matter of serious concern for the AOTI and our members and one that must be addressed by the HSE.

In summary, the AOTI does recognise the need for standardisation of assessment of need, AON. However, we can only support an AON process that best meets the needs of children and their families and that does not place occupational therapists in an impossible situation where they are caught between HSE and CORU requirements. We have requested that the HSE engages directly with the AOTI and other stakeholders to ensure a full and thorough consultation on the standard operating procedure, SOP, for the assessment of need and to resolve the concerns we have expressed here today.

To date, there has only been one meeting which took place one month ago. The AOTI is keen to engage with the HSE on the development of this and any future policies affecting children and more broadly so that difficulties such as those can be prevented. Ms O'Malley and I look forward to discussing this with the committee today, following the other opening statements, and we will endeavour to answer any questions the committee may have as best we can.