Social Structures
Author: Mac MacLachlan, Co-Director of the Assisting Living and Learning (ALL) Institute, Professor of Psychology & Social Inclusion, Maynooth University and Clinical Lead for Disability Services, Irish Health Service (HSE)
On the 11th March 2022, Justice Siobhan Phelan’s Judicial Review , was released which sought to address the grievances in two particular cases, and to interpret the intensions of the Disability Act (2005) regarding the Assessment of Need (AoN) process. I can make no comment on the particular cases, but I would rather comment on the broader issues touched upon in the decision and on Justice Phelan’s interpretation of the AoN process, while well intentioned and carefully considered, seems to me very problematic. While she refers to a related 2019 report from the ALL Institute on a closely related topic, the judgement will not help us address the challenges, which are certainly not unique to the Irish context.
The Standard Operating Procedure (SOP) for the AoN was introduced to have a standardised and shorter assessment time, allowing for services that assist children and parents to be provided more quickly. It allowed for assessment continuing as part of routine clinical practice alongside services such as therapy, recognising that assessment is not a one-off event, and that people’s needs change over time. The SOP also allowed for the situation where, should a preliminary assessment not be sufficient to identify the need for services, then a more detailed assessment would follow. This is a pragmatic approach, to maximise the impact of available resources, as the Health Service Executive (HSE) is compelled to do under section 7 of the Health Act (2004): resources should be used in the “most beneficial, effective and efficient manner”.
Prior to the SOP, in some places, assessments only were being done with no associated intervention services. The lengthy assessments undertaken by clinicians meant that they often had no time to then provide intervention services as they had to move on to the next person on the waiting list for assessment, in order to comply with citizen’s legal right to an AoN as indicated in the Disability Act (2005). So, after hours (often over 30 and sometimes over 100) of assessment, children and families were informed about what services they needed, but that they could not be provided for them, often for years. A less detailed preliminary assessment was therefore an attempt to address this perverse situation which caused enormous frustration, anger, and stress on behalf of parents; and inevitably resulted in missing valuable windows of opportunity to intervene early and at crucial stages of the child’s development process. Lack of such intervention may also create ‘secondary disabilities’ arising because the primary disability is not being addressed.
Justice Phelan argued, correctly, that the Disability Act (2005) did not envisage one assessment leading to another assessment, which would occur if the preliminary assessment could not identify services that would help the child, and a further assessment was needed. She also argued that by conducting more detailed assessments the HSE can understand better the detail of the resources we are lacking and then advocate for their provision.
Whilst shorter assessments do not necessarily underestimate the resources required for intervention, they could just as easily overestimate them. I feel that supporting a process to identify the need for resources, while in doing so diminishing existing resources, due to time spent on lengthy assessments, is fraught with the dangers already noted. Presently however, resourcing has been dramatically increased, but too few people are available to provide the services so desperately needed. There is no short-term fix, we must equally substantially increase the numbers in training to provide the needed level of service.
It is however where Justice Phelan argues for the need for diagnosis, that I believe her judgement departs from best practice and conveys an inadequate understanding regarding diagnosis in disability. While correctly stating that the AoN must identify needs, the services required to address those needs, and the time frame in which they are to be provided she then states that “None of this can be effectively achieved without also assessing the cause of the child’s disability in an accurate and competent manner” (para 156) and that to do this “it is necessary to consider and reach a decision on the cause of the restrictions though appropriate and indicated diagnostic assessments” (para 157).
For the majority (over 75%) of people with intellectual disability there is no identifiable cause. Disabilities where there are identifiable causes, such as a chromosomal or genetic cause; are diagnosed either during pregnancy or after birth by genetic testing. For Autism (which constitutes more than half of the requests for AoN’s) there is no biological test to diagnose autism. In autism, as in most types of neurodevelopmental disabilities, “diagnosis” is simply a description of observed behaviours – it does not explain them, identify a cause, or predict the needs of the person.
It is now widely acknowledged that many developmental disabilities do not occur alone, but in combination. Research over the last twenty years shows a significant overlap in the “symptoms”, or characteristics, of behaviours across what had previously been considered discrete conditions. Sometimes we simply don’t know – can’t name, explain, or determine – what condition someone has. For instance, in the UK each year approximately 6000 children are born, for whom there is no diagnosis possible; and collectively referred to as experiencing SWAN (syndrome without a name) conditions.
HSE disability services are needs-led, not diagnosis-led, in accordance with internationally recognised best practice. The AoN is an assessment of need, and not an assessment for diagnosis. Diagnosis can be informative but is neither necessary nor sufficient to identify the needs of a child or adult with disability. Two people with the same type/diagnosis of disability may have few, and sometimes no difficulties/symptoms in common; and need completely different types of services and supports.
Diagnosis has however become a currency for access to important services and supports within Ireland. Furthermore, parents or people with disability, may appreciate a label as authenticating their experience and empowering them through greater understanding and shared identity with others. Neither the AoN process, nor the usual way of accessing services through community disability teams, should deny the possibility of a diagnosis if one is sought; but that is a very different thing to believing that a diagnosis is required to assess someone’s needs – it is not.
Justice Phelan’s judgement promotes a “medical-model” approach to understanding the “difficulties” and “restrictions” of people with disability. These latter two words are the terminology used in the Disability Act (2005) – the word “diagnosis” does not appear even once in the Act. The use of such terminology is contrary to the United Nations Convention on the Rights of Persons with Disability (CRPD): one need only look at the responses to the country reports, which States submit to the Committee on the Rights of Persons with Disability, to see how critical the committee is of a diagnostic approach to disability and disability service provision.
The judgement suggests a “gold standard” for assessment, but none exists; and it confuses HIQA’s requirement for a comprehensive range of outputs from the assessment, with a comprehensive process in doing the assessment. If our clinicians are being asked to now undertake “comprehensive”, “gold standard” assessments that produce a diagnosis; they will surely fail. But they will seek to extend assessments – in both time and range – to show they have conscientiously explored all avenues, and not to leave themselves open to legal challenge regarding their competence.
This judgment while well intentioned will result in even longer assessments than we had before the SOP, and fewer intervention services. Introducing a new word and concept, to AoN, where it had previously been deliberately omitted by the drafters of the Disability Act (2005), is, I believe, a profound and unhelpful misinterpretation of the intension of the Act and should be challenged.