Oireachtas Joint and Select Committees
Wednesday, 27 June 2018
Joint Oireachtas Committee on Health
New Standard Operating Procedure for Assessment of Need under the Disability Act 2005: Discussion
In this session the committee will meet representatives of the Association of Occupational Therapists of Ireland, AOTI, the Psychological Society of Ireland, PSI, and the Dedicated Children's Advocacy Warriors, DCA Warriors, to discuss the new standard operating procedure for assessment of need under the Disability Act 2005, which has recently been commenced by the HSE.
I welcome Mr. Odhrán Allenand Ms Aoife O’Malley from the Association of Occupational Therapists of Ireland; Dr. Catherine Long and Dr. Michael Stoker from the Psychological Society of Ireland; and Ms Margaret Lennon and Ms Ruth Gilhool of Dedicated Children's Advocacy Warriors.
I draw attention to the fact that by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to the committee. However, if they are directed by the Chairman to cease giving evidence on a particular matter and they continue to do so, they are entitled thereafter only to a qualified privilege in respect of their evidence. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person or entity by name or in such a way as to make him or her identifiable. The opening statements submitted to the committee will be published on the committee website after the meeting.
Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official either by name or in such a way as to make him or her identifiable.
Will witnesses and members please turn their mobile phones off or to flight mode, as they can interfere with the recording of the session?
I invite Mr. Odhrán Allen to make his opening statement.
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.
Dr. Michael Stoker:
On behalf of the Psychological Society of Ireland, PSI, I thank members for the opportunity to address the Joint Committee on Health today. I am joined by my PSI colleague, Dr. Catherine Long.
The PSI is the learned and professional body for psychology in the Republic of Ireland. The society is committed to maintaining professionally appropriate standards of practice in psychology and also to exploring new and innovative ways of furthering psychology as a real and applied science.
We welcome the opportunity to detail our concerns regarding the proposed new standard operating procedure for assessment of need. While the PSI is supportive of an SOP in principle, we have significant concerns regarding the document in its current iteration. It is our considered opinion that the proposed changes to clinical practice described within the SOP will in many cases prove detrimental to children and their families. The parallel operation of the new SOP and the iHIQA standards for the assessment of need, 2007, is likely to give rise to conflicting requirements for clinicians. Of particular relevance is a published determination by the disability appeals officer, which included the following deliberation: "the contents of HSE guidance cannot be relied upon to excuse or justify any failure of (the psychologist) to comply with the HIQA standards". Furthermore, we have concerns that compliance with the SOP could lead to psychologists being in breach of the PSI code of professional ethics of 2011, and, in due course, the CORU framework for a common code of professional conduct and ethics of 2010.
Our full position paper, which was also submitted to the committee, highlights our concerns in detail. A summary of same is as follows: First, it is the opinion of the PSI that the preliminary team assessment, PTA, model described in the SOP is contrary to the spirit of the Disability Act 2005, which was developed as rights-based legislation. The PTA is a brief screening assessment. Its introduction will significantly reduce the level of assessment provided to a child under the statutory framework of AON. Prior to the SOP, the child's needs determined the level and type of assessment provided. These assessments varied substantially because children's needs vary. However, the SOP replaces this with a uniform screening assessment, to be completed by two clinicians in a maximum of 90 minutes, regardless of the child's needs.
Second, the proposed SOP states that the Disability Act does not give a right to access to a diagnosis. It is proposed that diagnostic assessments, for example, for autistic spectrum disorder, will no longer be provided as a part of the AON protocol, and will instead be identified as "health needs" in the service statement. However, the independent disability appeals officer has found against the HSE on several occasions for failing to provide a comprehensive assessment of need, including failures to address the specific concerns of the applicant relating to diagnostic assessment, as required by the iHIQA standards.
Third, the Disability Act states that an assessment report shall state whether the applicant has a disability, state the nature and extent of any disability, and describe both the health and education needs occasioned by the disability and the health or education services required to meet those needs.
It is the view of the PSI that in the majority of cases it would not be possible for a psychologist to answer these questions and feed these back to parents within the maximum timeframe stipulated by the SOP. Adequate time with parents or guardians is required, along with sufficient time with the child for the purposes of direct assessment. It is also essential to give parents or guardians time at the conclusion of an assessment to process their reactions to any diagnosis or other feedback, in accordance with Informing Families of Their Child's Disability: National Best Practice Guidelines.
Fourth, in the view of the PSI, introduction of the SOP will give rise to the following risks: (a) A child may incorrectly be deemed not to have a disability, as the disability is not apparent from a screening assessment. The absence of evidence in a single screening session and setting is insufficient evidence to warrant a determination of the absence of a disability. In the event that a child receives an incorrect determination of no disability, they will consequently be denied more comprehensive assessment, and receive either no or inappropriate intervention; (b) A child's difficulties may be incorrectly formulated, again due to a comprehensive assessment not being permitted within the PTA model; (c) A child may be deemed likely to have a disability, but to require further comprehensive assessment to determine the nature and extent of the disability.
In many geographical areas, each of these scenarios will result in substantial delays for many children and their families in accessing a wide range of appropriate and needs-based financial supports, educational provision, and health services. In addition, the latter two scenarios will result in children being placed on potentially inappropriate and long waiting lists for assessment or intervention. I thank members of the committee for inviting us here this morning. We are happy to answer any questions members may have.
Ms Ruth Gilhool:
We thank the Joint Committee on Health for its invitation this morning. My name is Ruth Gilhool and I am joined by Margaret Lennon. We are two of the co-founders and administrative staff of the DCA Warriors group. We currently represent almost 20,000 parents who have children with special needs and-or serious illness. Our main issues with the new standard operating procedure for assessment of need are the lack of consultation and the failure to inform parents of the changes in this procedure. The full text of the SOP was not available online at the time of writing, and it has been in operation for some time already. Parents should be fully informed of matters affecting their children's health and well-being, in particular if their needs are complex.
The following is a quote from Dr. Rita Honan, clinical psychologist. "Diagnosis is the gateway to treatment and the subsequent reduction of symptoms and increased cognitive and adaptive functioning for the majority of children on the autism spectrum. Every day this is delayed leads to missed learning opportunities."
In particular we have an issue with the initial screening process, which consists of an overly complicated application form, additional information sought by phone, and then a preliminary team assessment of no more than 90 minutes. We do not consider that to be a sufficient amount of time to make a determination of disability in a child. Correct assessment and diagnosis is vital for parents in order to be able to effectively advocate for their child. Under the Constitution, parents are the primary educators of the child, and with complex health and educational needs, it is essential that these needs are determined under clinical best practice standards. A lack of diagnosis hinders intervention which has an impact on health, mental health and education.
Without significant investment in staffing numbers, the new primary team assessment, PTA, will pull clinicians away from their positions in early intervention teams, EIT, the school age disability teams, SADT, and primary care teams, in order to carry out screening as part of PTA. This will result a delay to intervention and lengthening waiting lists for these services, which is already over four years in some areas, exacerbated by children subsequently being referred onto these lists after the screening process.
This process moves children effectively from the waiting list for assessment of need, which has a statutory timeframe attached to it, to the waiting lists of the disability network team, early intervention team or school age team, which do not have a statutory timeframe. These lists are already lengthy, with waiting lists of up to four years being operated in some parts of the country.
Not having timely full assessment and diagnosis, where warranted, of a child's needs, puts a child at a distinct disadvantage when it comes to having his or her health and educational needs met, with knock-on effects into the applications for school supports, specialised school placements, ASD preschool, home tuition and higher education. We have outlined these effects in the briefing document we supplied to the committee.
Early intervention is crucial for those with milder initial presentations and those who are more severely affected. An investment in early intervention can save a significant amount of money in the long run, not to mention the improvement in quality of life of the child and his or her family. If appropriate supports cannot be accessed due to a child being on a lengthy waiting list, the knock-on effects, especially in the area of mental health, are in some cases catastrophic, and we see examples of this among our members on a daily basis. The proposed approach by the HSE is shortsighted and pushes problems down the line, where they will be more severe and costly to resolve for both the families and the State.
We request the Joint Committee on Health to write to the Minister for Health with its report. It was an oversight on our part that this was not included in our opening statement. We thank the committee for the invitation and giving its time. We invite any questions, which Margaret Lennon will be happy to answer.
I thank the witnesses for coming to this morning's meeting, which I suggested. If I were to do so again, I would ask that the Health Service Executive, the Minister of State and all the organisations present should be represented in order that we could all be on the same hymn sheet. That did not matter and we can certainly relay the witnesses' concerns to the next meeting. There is a very good mix of organisations represented today. I especially welcome the parents who live the lives of caring for someone with a disability every day. To know what is happening, one has to walk in someone's shoes. They are especially welcome and I thank them all for their contributions.
Obviously the current model of assessing need is not working with more than 4,000 children awaiting assessment, three quarters of whom are waiting longer than the three-month target - often way longer. Those in my constituency of Cork South-West and across all of Cork and Kerry seem to be waiting longer for the assessment. They spend longer on waiting lists than people anywhere else in the country. I know Cork is the biggest county and has the biggest population outside Dublin, but even pro ratawe seem to be waiting longer for everything for some reason. I will raise that at the next meeting; it is obviously not something the witnesses can answer.
As the witnesses have outlined, the new proposals will not work and obviously the old system is not working. I think everyone's heart is in the right place, but something has gone wrong. What can be done for the future? The witnesses have all highlighted what is not working and what they believe will not work. What can be done? If the Minister of State were here this morning, what would the witnesses suggest? This whole area is in disarray. As the Fianna Fáil spokesperson for disabilities, I deal with this issue every day. The length of time to people wait to have an assessment of need done keeps coming up. As Ms Gilhool said, diagnosis is the gateway to treatment. She put it very well and I will use that saying in future. Given that early intervention is so important, the assessment of need and where it directs people to go are also important. Rather than, as we all do, knocking the present system and knocking the proposed new system, what do the witnesses suggest can be done?
Mr. Odhrán Allen:
We knew this question would be asked and it is not an easy question to answer. We hope that part of what will come out of today is a focus on a solution. From the perspective of the Association of Occupational Therapists of Ireland, this standard operating procedure, SOP, has highlighted three problems in the system. In seeking a solution we must take account of the problems. The SOP has highlighted the under-resourcing of services leading to long waiting lists, which is a reality in the disability services. The SOP will only exacerbate that. There is an inequity of service delivery nationally because only two of the nine community health organisations, CHOs, have been reconfigured under progressing disability services. That is part of the solution that is needed in the system also.
There are issues with the Disability Act and the assessment of needs process, which are matters for the Oireachtas to address. It is clear from the two professional groups represented here and it is certainly a serious concern for our members, that the professional autonomy of occupational therapists is compromised by this SOP. Persons carrying out an assessment of a child to determine whether he or she has a disability need to be able to stand over the report they produce or to which they contribute. They need to be satisfied they have gathered all the correct information and have carried all the necessary assessments to be able to stand over what are very important matters. Certainly the 90-minute cap on assessment is hugely problematic.
Page 79 of the SOP deals with guidance for assessors and under the section on assessment process, it states that a preliminary team assessment will be the first step in every child or young person's interaction with the disability service and that in cases where an assessment has been made for an assessment of need, AON, under the Disability Act 2005, this preliminary assessment will fulfil the team's obligation under AON. What this is saying, not in the body of the SOP but in the guidance notes for assessors, is that the HSE's intention is that this preliminary team assessment will become the model for the first point of contact with all disability services for children.
This is problematic because we understood this was an attempt to address the problem with the AON - the requirement in the Act for it to be completed within three months. However, this states that the preliminary team assessment will become the first point of contact for all children. We do not understand why that would be the case. Surely the first point of contact for somebody who is not seeking an assessment of need should be to be seen by a team for a full team assessment. That needs to be looked at.
The following item in the guidance notes on page 79 needs to be fixed. It states that no family should leave the clinic without some strategies to support the child or young person. We understand why the HSE would want that to happen. No professional would like to be seeing a family in this context and not be able to follow through. However, the reality is that this is a preliminary team assessment under the AON. It is not a full comprehensive professional assessment. We should not conflate the two. A professional cannot be asked to carry out a preliminary team assessment to establish what is required under the Act and then be expected to carry out a level of intervention, which he or she cannot do without first having carried out a full professional autonomous assessment. That is part of the solution. That is my initial response. Ms O'Malley may wish to add to that.
Ms Aoife O'Malley:
Our main issue is with resourcing. It simply is not possible. There are a number of occupational therapists and other clinicians working in a uni-disciplinary manner at the moment because of lack of reconfiguration. Even within reconfigured services there is still under-resourcing and understaffing.
It would simply be impossible to do this type of assessment without the staffing.
Dr. Catherine Long:
We all feel for families left waiting for long periods - longer than they should be - to receive a thorough assessment. That is the position in many areas of the country. It is absolutely right to say that is not acceptable. Our concern is that the proposed solution is not a solution. It removes the legal right for an assessment given under the Disability Act 2005 and potentially places people on a waiting list where they would have no legal right and would have to wait as long as required by service and resource demands.
There is geographical variation around the country. Assessments are provided on a timely basis in some areas but there are also many areas where they are not provided in a timely manner. We view that as a resourcing issue. Resources cost money, which is limited, and resources allocation is the constant problem within any service. Investment needs to be made in services. The broad base of evidence consistently shows the provision of early intervention saves money and reduces costs in the long run. One Australian study on providing early intervention services to a child with autism estimated lifetime savings of between 750,000 and 1.3 million Australian dollars per child. The benefits came from reduced support in adulthood, reduced services, increased employment rates and reduced mental health difficulties. While there is a short-term cost to increasing resources, the evidence shows an economic saving in the long run, as well as a human saving, from supporting children and families and giving them the best chance.
I reiterate Mr. Allen's point about the constraints the SOP document places on clinicians regarding autonomy and decision-making. We do not do assessments if we believe they are not necessary. Psychological assessment can be complex and there can be differential diagnoses. We need the freedom to do the assessment we consider necessary to give an appropriate diagnosis as otherwise there is a risk of giving an inappropriate diagnosis.
Ms Margaret Lennon:
The SOP document states that parents should be fully informed at all times. I would go further. We should be consulted much more because we are doing the work that is needed in our homes. We get professional guidance, usually privately. As the professional bodies have outlined, the waiting lists are, unfortunately, horrendous. I echo the Psychological Society of Ireland. The cost of not providing early and appropriate diagnosis and intervention will be catastrophic given the rising prevalence of autism globally. Early identification is paramount. Figures for Ireland compiled by the NCSE identify that one in 65 children in the education system has a diagnosis. No data are being collected by the HSE to determine the real figures. How can a service or an education be planned if the data are not available?
The position in Ireland is so urgent that childhood developmental checks should be changed to incorporate the modified checklist for autism in toddlers. This would allow the HSE to be informed of the numbers coming into the service, even prior to an assessment of need. The service could then plan for these numbers and the staff hiring requirement. We have almost 20,000 members in our group, the majority of whom have children with autism. They are coming in droves and keep coming. On average, we are adding approximately 400 members a month and nearly every person who applies for membership has a child with autism.
We would also like to mention dyspraxia. These disabilities are often not easily identifiable unless a professional diagnostic assessment is carried out. The knock-on effects for children of not being able to access supports at school or via home tuition could be disastrous for many of them. There are even parents who will claim for domiciliary care allowance, DCA, if the desktop assessment states their child does not have a disability. While DCA and carer's allowance do not require a diagnosis, professional reports are needed. From what the professional bodies have outlined here today, it is clear that a 90-minute assessment will not provide that.
I would like to finish. I am interested in Mr. Allen's thoughts on what changes could be made to the Disability Act 2005. Perhaps we could discuss that a future meeting if we would like to have a think about the issue. We are helpless in many ways, but that is something that we can try to change. I am interested in meeting Mr. Allen to discuss that.
I thank our witnesses for attending this morning and for the information they have been able to give us. This harks back to a discussion we had about waiting lists in private session earlier. My query is still why we have waiting lists. The needs of the patient, that is, the person directly on the front line requiring attention, whatever that may be, must be the first consideration. I cannot for the life of me understand why we have these conversations from time to time. There seems to be a difficulty gaining access to services for people with a particular special needs requirement.
How has it come about that access to the service required is more difficult to secure in some parts of the country than in others? It is recognised that early diagnosis is of great importance and we preach that message all the time to our constituents and the parents of children who come to speak about the complicated application form. Arising from that, which guru designed the application form in such a complicated way? Remember that when these forms have been filled in, they have to be assessed by somebody again. It is a long drawn out assessment requiring serious study. We know it is a serious subject. This is not the first time that assessments have been done.
The HSE is trying to address this issue, although it may be going about it in the wrong way. The purpose of the exercise, however, is to try to ensure that children in all parts of the country get timely access to whatever diagnostics or treatments they require. Following on from that, what comparisons have been made with other jurisdictions, such as Northern Ireland and the UK which are our nearest neighbours, to compare like with like?
Can we do something that we are not doing to improve the system and bring it forward some little bit? This is something we as public representatives, and the Chairman in his professional capacity and a public representative, have had to do. We have had to meet the parents of children and explain that there is a delay. Why does there always have to be a delay? Surely we can introduce some system that does not have delays associated with it? To have a child waiting for two, three or four years, or six months for that matter, is an appalling situation because the parent does not know what the outcome will be. They are deeply concerned and deeply stressed, and nothing changes. We now discuss everything openly in this country with regard to health, but we must have come to a conclusion somewhere along the line that the first priority has to be the potential patient, namely, the person who has a disability or perceived disability but the parents of the children need to know where they are going. They need to have some information as to what the future holds for them. To tell them the child will be put on a waiting list, and that everything will be all right if they wait long enough and that something is sure to happen, is no way to treat patients.
My point is it is as easy to do things quickly as it is to do them slowly. As a matter of fact, to do things slowly has more complications and creates greater expense and costs all around than doing it the other way. Everybody says we need more resources. There has to be some reason that in some parts of the country the resources are more seriously deficient than in others. It is supposed to be a universal service. It is supposed to be delivered all over the country at the same time, in the same way, in the same fashion and to the same extent. Access to it is supposed to be universally applied also.
It appears to me that what the HSE is trying to do is standardise the service. Yes, we need to standardise it but we need to improve its availability and access to the service from the point of view of the children and the parents of those children, who have a deep concern and know that early diagnosis, early action and early treatment are key to the whole outcome. These are some of my thoughts.
I thank the witnesses for coming today and for all the work they do as parents and practitioners. For me, one of the most difficult experiences of being a Deputy is meeting the parents of children who have special needs and who are waiting for assessment or access to special education supports, wheelchairs, occupational therapists, speech and language therapists and counselling. I cannot begin to imagine how frustrating it must be for all of the witnesses as parents and practitioners. I thank them for everything they are doing on a daily basis for our children.
I have a number of questions, which can be answered by any of the witnesses. There are parents watching this, as are other legislators. Will the witnesses walk us through the steps? At some point, the parent or parents of a child may begin to think that child might have special educational needs and they would like to get the child assessed. Will the witnesses walk us through the process from the moment that parents think they want someone to take look at their child to the child actually getting the intervention? Do they go to the community nurse or the GP? How do they end up on the list for an assessment? Who does the assessment? Once the assessment is obtained who else is involved? I know special education needs organisers are involved, as are psychologists and occupational therapists, and I know it is different for every child, depending on his or her need, but for those watching will the witnesses walk us through the process and, if they would, the typical delays, because we know there is a delay to assessment and we know equally there is a delay from assessment to treatment? Will the witnesses walk us through this?
Where does it work? We know some parts of the country are better than others. I hope the witnesses will be able to tell us where, if anywhere, we are doing well and, even if it never works perfectly, where does it work the best in Ireland? Are there areas that have begun to get their heads around this and are making good improvements?
I read the opening statements previously and I have listened this morning. It is clear nobody is happy with the 90 minutes, from a parental perspective and from a clinical and professional perspective. Let us assume the HSE also cares about the nation's children, and I believe it does. Why do the witnesses think the HSE recommends the 90 minutes? Were they consulted, as practitioners and parents' representatives, in the formulation of the standard operating procedures?
What are the opinions of the witnesses on the quality of support when children get it? This morning, obviously, we are speaking about the process for assessment and access. We are all very aware of the delays in assessment and delays to access. I would like a quick view as to whether, once the child actually gets the intervention he or she has been assessed as needing, sufficient resources are available. It is a bit like the way people in Ireland state frequently that it can be very difficult to get into the HSE but once one gets in, the quality of treatment is usually pretty good. In the opinion of the witnesses, is the quality of treatment good? I do not mean whether the individual practitioners are any good. I mean whether, once people finally get access, support for the child is comprehensive and sufficient.
Ms Margaret Lennon:
In my case, my son regressed very suddenly when he was quite young and I thought I would go to my GP because he would know why. He is a lovely GP but he did not know. My son was referred to have grommets because the GP assumed it was a hearing problem. It was not. We then set about trying to find out where we would go to find out what was wrong. This was some years ago and we did not have access to social media at the time. I remember looking at my son one day and I realised that I thought he had autism. The word terrified me because the only thing I knew about it was with regard to a campaigner who had been in the media a few years previously, Kathy Sinnott. I remembered her very public and horrific battle, and I thought this cannot be happening. To make a long story short, our GP did not know and we assumed our paediatrician would know. We did not realise it has to be a clinical psychologist or psychiatrist who diagnoses autism. We went around and around and eventually sourced a private psychiatrist. We were so sure at this stage that he had autism that I had decided if the psychiatrist said it was not autism we were getting the next plane out of Ireland because something was really wrong. He confirmed the diagnosis that it was regressive autism and that it was mild to moderate.
At that time there was very little available, so we went outside of Ireland to source clinicians and educational professionals to give us an assessment to allow us to know what our son needed as opposed to what was here at the time. We set about providing this for him and, thankfully, because he had early, appropriate and good quality intervention, he made exceptionally good gains.
What I have seen in the intervening years is a wave of parents coming with young children who do not know where to go or what to do. GPs are inundated. Previously one could self-refer for assessment of need. Now, the new standard operational procedure puts another layer on this, whereby there is a desktop assessment first to see whether the child can actually progress to be assessed.
This is completely unsatisfactory. I would go so far as to say it is putting children at risk and is putting parents in an extremely difficult position. International best practice tells us for every day one delays in providing an early and appropriate diagnosis and early and appropriate intervention, one's child will regress more. Where are we going to go in another ten years? How is our country going to support a generation of children who will end up extremely disabled when, if they were given a modicum of what they need, a good number of them would be able to live relatively independent lives?
On the standard operating procedure, SOP, as to whether we were consulted, the answer from DCA Warriors is "No." We were not even aware that this process was going on. We became aware last year that the HSE had announced an autism review and submissions were invited, on 16 August, to be in by 12 September. We did not think this had anything to do with the current SOP but, in correspondence that I got recently from the team that generated the SOP, it would appear that the submissions for the autism spectrum review last August were used in generating the new SOP. We sent in a submission to the autism spectrum review last year. We had no idea at all, even from the terms of reference, that this would include in any way the standard operating procedures in this regard.
As to the quality of therapy and treatment, we believe there are a significant number of extremely committed therapists and clinicians within the HSE. We also believe that they are being put under horrendous pressure. I would go so far as to say that they are being prevented from carrying out their job to the best of their ability. Most of our parents report to us that when they finally access services, such as occupational therapy, OT, or speech and language therapy, it will be for a block of maybe five or six sessions, and they might not be seen again for years. That would be our take on the questions.
Mr. Odhrán Allen:
I would like to respond to Deputy Durkan's questions. The Deputy's question, "why do we have waiting lists?", is an important one. There are two issues that need to be looked at. The first is what structure of services is the right structure. The HSE has identified a good structure called the progressing disability services programme. There is buy-in from all stakeholders that this is the right structure. It is the right structure because it provides a consistent structure of services throughout the country, it is a needs-based service rather than a diagnostic-based service, there is equity of access to services and there is one clear pathway for all children according to their needs, and effectively, children would be identified as either having complex or non-complex needs. If they are non-complex needs, they are dealt with by primary care services. If they are complex, they will be dealt with by children's disability network teams.
However, as good as that structure is, it cannot work without adequate resources. The Deputy is correct that the issue of resources always comes up. We understand the constraints. There is not a bottomless pot of money. However, the reality is in the past 20 years there is a greater awareness and openness to the needs of children with disabilities. More and more children are presenting with difficulties and needs that need to be met and there is an increased demand on services. There are more children with needs coming forward but the progressing disability services cannot be implemented without the adequate resources.
As for the waiting lists, there are variations. Ms O'Malley will say a little bit more about that.
In terms of Deputy Durkan's question about the assessment form, who designed it and why it is so unwieldy, we had no involvement. As I stated, while it states in the SOP that professional representative bodies were consulted, for the record, we were not. No doubt there were occupational therapists and other professionals who work in the HSE who may have been involved, but as the professional body for occupational therapists, we were not consulted. As I stated, we have never been sent the SOP and were not involved in its development.
In terms of comparison with other jurisdictions, what works elsewhere or what might work here, the Deputy raises an important question, which is the issue of evidence-based service delivery. We would question what the evidence base is for this SOP. Some of the evidence can be service audit. It can be the experience of professionals on the ground and feedback from users of services and families, but also what clinical evidence is there for good practice. We would all agree that having a safe evidence-based and ethical approach is the right one.
I agree that delays in diagnosis are difficult for families. As Deputy Durkan stated, families need to know where they are going. We would feel that this SOP does not improve services towards meeting that end of helping families know what is going on for their child.
Ms O'Malley will try her best to respond to Deputy Donnelly's questions.
Ms Aoife O'Malley:
I will talk Deputy Donnelly through what a typical referral might look like and I will use the autism spectrum disorder, ASD, service in the south as an example in that regard. A parent might have concerns and maybe go to a primary care clinician, such as a GP or public health nurse, or go directly to the assessment officer in the HSE and highlight the child's needs. They might complete an assessment, essentially, a screening assessment, and there may be an indication of, say, autism. They will refer then into the autism service. Even referring through the assessment of need, AON, process, there is a two and a half year waiting list for the assessment of need to be completed. They will then be provided with the diagnosis, if that is the case, and the child will be put on a further waiting list for further assessment or intervention. The longer that waiting list is, the more in-depth and comprehensive that assessment will have to be, essentially, one is completing a reassessment of the child because things have changed over the period that one has been waiting. Then intervention can be provided.
If the SOP is to be introduced within this particular service and the parents highlight a need with the GP or the primary care clinician initially, he or she will say there is an possible indication here of ASD and will refer through the AON. Then there will be an assessment completed within six months. A further round of clinicians will say an ASD assessment might be indicated here and the child will have to go on the waiting list for diagnostic assessment, and then one has a further two and a half year waiting list.
One should note that the assessment of need process does not give a child any right to intervention whatsoever. It highlights the needs. One of the primary issues with the Disability Act in general is that it gives the right to assessment and identification of needs. It does not give the right to intervention and supports to be put in place.
With the Chair's permission, I ask Ms O'Malley to go back and walk us through that again. For those listening, there are many three-letter acronyms, six months and two and a half years, and all sorts of things. Where a parent has a concern and states that he or she wants his or her child assessed, does the parent typically go to his or her GP?
This is a primary care clinician. If the GP or the community nurse agrees that there is a need to have this young boy or girl assessed, is Ms O'Malley saying that in the south east the child will wait two and a half years for the initial assessment?
If that assessment flagged something and showed this young boy or girl may need occupational therapy, psychological support or whatever, is Ms O'Malley saying then there is a second round of assessment?
Ms Aoife O'Malley:
Not necessarily. Currently, when the primary care clinician refers into the service, the child is placed on a waiting list for two and a half years for diagnostic assessment. As part of that diagnostic assessment, the assessment of need under the Disability Act is completely currently and then there will be a further referral to an internal waiting list for intervention. The statutory assessment needs to be completed, obviously, because it is a statutory assessment.
From the time the parent brings his or her child to the GP and the GP agrees to have the child assessed, in the south east it will take two and a half years for the child to be assessed. If one is bringing in a two and a half year old boy or girl, the child will be five by the time he or she is assessed.
Will Ms O'Malley give the committee a sense of the missed opportunity for that child, the difference that three and a half years would make to the rest of his or her life having waited until six years of age, as opposed to having the intervention within a few months? What difference does it make to the child's life?
Ms Aoife O'Malley:
That is a huge question to answer. Without a diagnosis, children do not have access to special education, special autism units or special needs assistants in schools. All of those opportunities are missed without a diagnosis. What is missed from an intervention point of view varies greatly, depending on the child. What my colleagues in the Psychological Society of Ireland and Dedicated Children's Advocacy Warriors have mentioned is the significant impact on the mental health of the child and his or her family. Going without a service, interventions, support and a diagnosis has an impact on the mental health and stress levels of the family, which is immeasurable.
It is fair to say that for the occupational therapists, the psychologists and the parents, the wait from two and a half to six years of age has a profound and long-term effect on the child's quality of life in moving into adulthood and his or her family. Is it fair to say the wait of three and a half years is very damaging for the future of the child and his or her family?
Is the lack of resources due to lack of money or ability to recruit the proper staff? As we have seen throughout the health service, there seems to be no lack of funding, but there does seem to be a lack of personnel to fill positions. Is that the case?
Mr. Odhrán Allen:
I need to clarify that the service is not in the south east but in the south, in Cork. The provision of money to put progressive disability services in place and employ and recruit the necessary professionals to run the service is part of the issue. Some €14 million was allocated for 275 additional posts to progress disability services between 2014 and 2016. When staff in children's disability services were mapped in 2016, there were only 175 more whole-time professional equivalents than in 2013. We can only assume that where the extra posts were filled, even though there are difficulties in recruiting staff, others were becoming vacant and staff were not replaced owing to the moratorium on recruitment. There are several factors - it can be difficult to recruit staff and it can also be that staff are leaving and not being replaced. It is also the nature of many professions that different audits identify that at any one time there may be up to 10% of posts vacant due to staff being on maternity leave and there being no backfilling. On the question of resources, there is the question of buildings, information technology and administration. Staff on maternity leave is also a significant issue.
Would having a central database of all the various assessments speed up the process of accessing information on a real-time basis? There are many application forms and referrals from one service level to another. If all of the information was available online, would it speed up the process?
Mr. Odhrán Allen:
Potentially, yes, but Deputy Stephen S. Donnelly is identifying a more fundamental issue, that there is a golden window of opportunity in the children’s lives that is being missed and it is undeniable. We have to bear this in mind. It comes back to what Deputy Bernard J. Durkan said, that we have to put the child and the user of the service at the heart of what we are trying to do in addressing the issue.
Someone asked about the figure of 90 minutes. We do not know, but it raises the question of the evidence available that led to that decision. We were not party to the decision-making and can only ask the question. What was the evidence that led to the HSE deciding on a figure of 90 minutes? In our research occupational therapists point out that it can take two to 12 hours and have explained that the range in time is due to varying levels of complexity. A figure of 90 minutes seems to be arbitrary.
Ms Aoife O'Malley:
Reconfiguration is very important for the streamlining of services to have the multi-disciplinary teams functioning within the one location and working together. It is extremely important, but that happens in only two of the nine CHIO. In my own clinical experience it is working better in those areas where multi-disciplinary teams are co-located and working together. That is not to say, however, that it is ideal because they are still under-resourced, but they do have access to their colleagues. When reconfiguration occurs, the assumption is that the resources will be put in place for the co-ordinated teams and co-ordinated access to services.
I asked about the universality of the service; it is either universally available or it is not. Why is it not universally available?
On the question of best practice and best procedures, there must be some access to what is happening in other jurisdictions. Somebody somewhere must be able to find out if we are doing it right. I cannot understand why, when new appointments are made, that there is not direct referral to those areas where there are no deficiencies in staffing levels. Otherwise, we will end up with no staff in some areas and extra staff in the areas that seem to be the most attractive places in which to be.
Ms Ruth Gilhool:
The Deputy asked about the process. We went to the local health nurse when our son was about two and half years old. It is the same for many parents who will go to the local health nurse who will say the child has grommets, this or that. Some will refer on, while others will not. In our case we went to the general practitioner who said he would refer us to the primary list team. I went back to him after seven months and fell apart in his office because my son was over the age of three years and not acknowledging us. We did not know whether he had hearing problems or there was a problem with food. We were not getting any sleep as he was up the whole time. He had many behavioural problems and sensory needs. It was actually on a parents' autism group page that I found out about the assessment of needs. I was not told by the public health nurse, the GP or the early intervention team where our son was on the list.
Ms Ruth Gilhool:
It took two and a half years to have him finally assessed. I did not realise I could seek speech and language therapy privately. I finally found out that I could to have him assessed, only to discover that the person whom we had paid privately was a member of the early intervention team. It took me four months to fill in the assessment of needs form. I called the liaison officer who gave me the sheet of paper and the early intervention team to beg them to help, saying I did not know how to fill it in. For me as a parent, it was heartbreaking to write everything that was negative about my son. Parents feel like they are betraying their children. They do not realise they have to say everything that is happening in the home. Our assessment of needs was completed within nine months. What got to me in the way of guilt as a parent was that I did not know what was meant by the words assessment of need and by then I felt I had delayed my son's diagnosis. We now find out that, when on the waiting list, parents are sent to parenting courses and told that if they do not attend, they will be signed out of the service.
Parents are attending parenting courses when they do not even have an idea of the diagnoses relating to their children. Some are sitting there unsure. If a course has a bit about autism, does that mean their child has autism? A lot of the time on pages like the Dedicated Children's Advocacy Warrior groups and other parent groups emotional support is given to parents who are falling apart in their own home. At this stage, the relatives do not know what is wrong with the child, whether it is behaviour or whether it is bad parenting. They are not getting any sleep and the whole family unit is falling apart.
Dr. Catherine Long:
I will keep it brief. I wish to address the issue of access and variability, which I think is a very important point. In the context of Northern Ireland and the UK, I refer to a 2011 publication by the National Institute for Health and Care Excellence, which is UK-based. It indicated that an assessment for autism spectrum disorder, ASD, takes approximately 47 hours on average. The Psychological Society of Ireland, PSI, would certainly welcome a review of services throughout the country in order to find out what works and what does not and look at how services can be reconfigured in areas where they are not working. I also think it would be useful to have the information around staffing levels, population levels and demographics in different areas. Can that information explain why some areas have longer waiting lists than others? They are two possible issues to be looked at in addressing why services are much more accessible in some areas than in others.
We will now bring in the remaining members, Senator Colm Burke and Deputies O'Reilly and O'Connell in that order. I ask the members to be mindful of time when asking questions, as we have a second session coming up shortly with representatives of the HSE.
I thank the witnesses for their presentation. I apologise for not being here for all of it. Unfortunately, I had to be in the Seanad for an item.
I want to revisit the staffing issue. This is a challenge across the board in the health service, in areas such as maternity, orthopaedics, etc. We face a challenge in recruitment. At present, 40% of medical practitioners who register with the Medical Council in Ireland are from overseas. If we decided to recruit new occupational therapists and staff who operate in the area of psychology, would they be available? That is my first question. Second, if we were to increase the level of services and earlier assessment, is there a plan outlining the other supports that would be needed in order to provide fast and efficient services? I am wondering if anyone has actually looked at that. I know it is the responsibility of the HSE because it is the main body involved. Has that been done?
The other issue that has arisen regarding autism and disabilities generally is that we have had a huge reliance on agencies outside of the HSE over the past 50 years. Approximately €3.5 billion is paid to more than 2,500 different organisations via the HSE's annual budget. Is there insufficient co-ordination between the bodies that are helping in this area and the HSE? Is there a buck-passing exercise going on as well where parents are concerned? Do organisations say that a certain problem is really not their responsibility and claim that parents should be dealing with someone else? I have come across families to whom this has happened, namely, families who are going from one organisation to another. It is a hugely frustrating system.
I also wish to consider the area of education. We have been lucky enough where the education system is concerned that we have employed a huge number of special needs assistants, SNAs. I think we now have the highest number ever, with about 15,000 SNAs in our school system. I am not saying that it is ideal or that everything is perfect but it is a huge improvement on the situation 15 years ago. Why have we not been able to do the same thing at the very initial stages? I was dealing with a family at the weekend in respect of a mental health issue. I was so frustrated - and I am still frustrated - by the challenge of trying to get access to mental health services for a young person. The initial stages are the most important and I just do not understand why we do not seem to be able to get them right. If someone gets into the system they are fine. The initial stages seem to be the problem. Has anyone ever sat down and evaluated what we need to do, how we can prioritise and how we can fast-track this process?
I thank the witnesses. I apologise for not being here for the first few minutes of the meeting. I have a couple of questions, one of which relates to consultation. We are in receipt of correspondence from speech and language therapists' representatives. We are informed that 8 September 2017 was reported as the date of the consultation, but their members have responded that notice of the meeting was very poorly communicated. Perhaps the witnesses can outline for us what notice, if any, they received. I can tell from the look on their faces that they did not get any. It might be helpful to explore what notice was given and what groups were consulted. If the witnesses were not consulted, do they have a view on why they might have been left out? Do they have a view on who the HSE selected? I refer, in particular, to the parents who I would have thought should have been central to any process, most especially those who bear the scars of having been through the system already. They may be best placed to comment on that and to have a very meaningful input. Perhaps the witnesses might offer a view as to why we seem to be hearing from people who were excluded entirely from the process. I am curious about that.
This question is addressed to the parents and the experts. Would the witnesses say there are particular problems or issues for first-time parents, parents who are living deprived in areas or parents are themselves experiencing deprivation? Is there a barrier? Reference was made to the golden window of opportunity and to the need to purchase services from the private sector. That is just not possible for some people. It is literally not possible. For those people and those children that golden window is presumably missed, and missed further by virtue of their socio-economic circumstances.
We are clearly 45.5 hours short of what would be considered average in terms of international best practice. Resources are always going to be an issue, but is there any international best practice the witnesses could cite that would back up this change in the standard operating procedures, SOPs? I am curious, because the more experts we talk to and the more we engage with parents who have been through this, the more we come back to the fact that there is no real understanding of how it operates or where it came from. Reference has been made to the issue of reconfiguration. There is a need to reconfigure the services, and I understand that the failure to do so is part of the reason why this SOP has not been introduced.
Two out of nine CHOs have multidisciplinary teams and everything works together. Is the new procedure being used in those areas? If so, is it working? Will it work in some areas but not in others?
My final question relates to the potential for a national screening assessment. There seems to be a postcode lottery in terms of access to services and outcomes etc. Would a national screening programme have any benefit? Are we anywhere close to getting the resources necessary for it and how would we need to change what we are doing in order to be able to deliver it?
We are getting mixed messages about the updated SOP. Is it being used in any areas at present? I understand the HSE believes it is not but I have heard it is being used in some areas.
We seem to follow the guidelines in every aspect of medicine but there is no correlation between 90 minutes and 47 hours. I would be interested to hear how the HSE can square the circle. Do the witnesses agree that the time spent waiting for assessment, diagnosis and subsequent treatment is time that people will never get back? The child is developing and it is a golden window of opportunity. In economic terms, there is a cost to trying to claw back the time. If a child enters the system aged five or six, perhaps after a grandparent notices something, is it not costly in comparison to dealing with the child when they are aged two? Do we have any figures for the children who are lost in the period between when parents apply for a child to be assessed and when they get an appointment? If 100 children wait three years, do we know what is the figure for wastage? What are the subsequent effects on their families if they fall out of the system, never to return?
Is the filling of posts because of maternity leave still an issue? Is the moratorium a historical, rather than a current, issue? Did Ms Gilhool indicate that, before a child is assessed, their parents could be sent on a parenting course? Can she elaborate on how this made her feel? It is very difficult for a parent to be put in that position. We know these conditions exist and that early intervention has better outcomes for children and families but there seems to be an ad hocapproach to it. If one of my children was doing something which I felt was not right, I would not know where to go. It must be very stressful and when a parent finally accepts the need for intervention they need to know whom to call. We appear to be losing a lot of valuable time that we can never get back.
I thank the witnesses for their testimony and observations. There seems to be an extraordinary lack of consultation between the witnesses, parents' groups and advocacy groups. The assessment of needs process is failing our children and it is unforgivable that a child has to wait over two years for an assessment and then cannot get the necessary speech and language therapists.
The new standard operating procedure is designed to circumvent the provisions relating to the assessment of needs and the Disability Act in order to cut waiting lists. It seems to be a process designed to make things look better than they are and is obviously a political decision made by the health services. As professionals, the witnesses know that early assessment and intervention are absolutely key for a child who has certain needs. If those needs are not met, the child will lose out. The Government is breaking the law in the Disability Act and five or six individuals have taken the Government to the High Court in this context. The State is not delivering on legislation to help the children of this country.
Individuals often have to go into the private sector to see occupational therapists but this is very expensive and probably out of the reach of most people, yet they are forced to do it. I know of some families which have gone to excellent professionals in the private sector but cannot afford to keep going. The public service is supposed to be for children but it cannot deliver the service. Something is dramatically wrong. There is dysfunction in the service across the country when it does not meet children's needs. Do the witnesses believe the standard operating procedure is a way of cutting waiting lists relating to children in this country?
Mr. Odhrán Allen:
I will go back to Senator Burke's questions. On staffing, occupational therapists are available. There are delays in recruitment because we have a panel system which is operated centrally by the HSE. That creates issues. That is part of the recruitment issue but there are occupational therapists who would be more than happy to take jobs in these services. What numbers are needed? I draw the attention of the committee to the document, "A National Model of Care for Paediatric Healthcare Services in Ireland". The HSE's own paediatric clinical programme has a range of resources, one of which is this document. Chapter 9 of this excellent resource is a guide to workforce planning. It outlines the numbers required within progressing disabilities services and across paediatric services. It has established the levels of staffing that are needed. This is an excellent piece of work.
The people leading on progressing disabilities services within the HSE are clear that the structure of progressing disabilities services is the right one but, in terms of resourcing, the physical infrastructure is required, that is, the building to house these teams. Administration staff, IT systems and professionals are also needed.
I refer to Deputy Kate O'Connell's questions. We agree that the HSE needs to answer the question about the 90 minutes discrepancy. On the missed timeframe and the question of whether children will ever get it back, the only answer I can give is that a lost opportunity is a lost opportunity. I agree with the Deputy that it creates a false economy in which we are trying to make up for the lost opportunity. The moratorium is gone, though there are historical issues related to it because there has not been any significant investment in services to roll out progressing disabilities services since 2016. Even though the moratorium is over, there has not been the investment to roll out progressing disabilities services in other areas. I will let Ms O'Malley take the other questions.
Ms Aoife O'Malley:
I will reply to Deputy O'Reilly's comments and questions. On consultation, we were not consulted on the SOP document. Senator Burke also made the comment that the SNA scheme is working relatively well at the moment. We were consulted on the scheme. We were able to feed into it and the evidence is there.
Ms Aoife O'Malley:
Deputy O'Connell made a comment about parents who come from difficult social circumstances, the huge discrepancies in the wealth of parents, and access to private services and so on. Parents also come in who are extremely stressed and anxious. Perhaps they have not slept in a long time because they have a child with such needs. I reiterate that there are huge issues for parents. Parents sometimes have their own learning needs, which must be accommodated. The 90-minute assessment will just not meet those needs at all.
The evidence base we use for the diagnosis of autism, for example, is the assessment of a multidisciplinary team. That does not mean two professionals, but a full multidisciplinary team. The preliminary screening could be considered a national screening programme, as was mentioned by Deputy O'Reilly. That is what the SOP is perhaps trying to do, but it is not enough. Is it happening on the ground? The AOTI position's is that it is a breach of our code of ethics and that of CORU. I am not entirely sure whether it is happening nationally but it is a breach of our code of ethics.
Dr. Michael Stoker:
I echo the majority of what my occupational therapist colleagues have just said. My understanding is that psychologists are available. We are also aware that there are some difficulties in the way in which psychologists are recruited to the HSE nationally. The PSI is currently seeking feedback from its members regarding their experiences of that. We hope to provide some information about that in due course.
As regards the consultation process, the PSI was not approached by the HSE in respect of the SOP. Our members brought the SOP to our attention. We produced a position paper expressing our concerns. The HSE wrote back to us in response to that position paper and subsequently invited us to meet, unfortunately at rather short notice, and we were unable to attend. We have not met the HSE with regard to this issue yet.
It is certainly the case that many children are unable to afford private intervention. They find that the provision of public services is delayed and, when they access them, the services can also be significantly less than might be hoped. That is definitely a factor in many areas, though not all. Our sense is that, partly due to the lack of consultation and partly due to referring to the evidence base regarding what constitutes a comprehensive assessment with a view to understanding the nature of a child's needs and their extent, the 90 minutes does not appear to be coming from an evidence base or from consulting the professionals.
Dr. Catherine Long:
On Deputy Kenny's question, we cannot speak to the motivation of the HSE. The HSE's stated position is that it is attempting to improve service and access to interventions through this change in policy. However, the effect of it is that the legal right of children to an AON will be fulfilled in a 90-minute assessment according to the SOP. The effect is that the legal right will be met by this assessment, which is not adequate. Children will then be placed on waiting lists for further assessment. The SOP states that a need for assessment can be an outcome of an assessment of need. The problem is that in areas that are currently under-resourced, this will leave children on long waiting lists to access that full diagnostic assessment.
Ms Margaret Lennon:
I would just like to reply to two points - one made by Deputy Kenny and one made by Deputy O'Reilly. Deputy Kenny asked whether the new SOP has been generated to circumvent the AON under the Disability Act, or to water down that legal responsibility. Looking at the timeline, the High Court gave permission to proceed in July 2017 for a challenge on the failure to carry out an assessment of need or to finish it on time. The HSE announced via press release on 16 August 2017 that it was doing a review on ASDs. In correspondence with me, the team tasked with generating the new SOP mentioned that it used the autism review submissions to generate the SOP.
Deputy Kenny asked whether the new SOP is being used. We have been informed that it has been deferred. I have looked at all of these documents quickly. There were 30 comments as of last night. I will just read one or two into the record. These are all current. They were made in the past couple of weeks since it was deferred.
Hi, I just want to let you know that the assessment officer sent me a letter to state that she was withdrawing my son from the AON facility. I wrote to her via email explaining why this was unacceptable and she said that, because of a legal case, they are now doing away with the assessment of need. I wrote to her repeatedly. I did the form with her over the phone [apparently she was asked to complete a new form] thinking I was finally getting somewhere and got speech and language, who recommended a psychological assessment. I brought my daughter previously to [she mentions the service] and it still upsets me the way we were treated. My Dad had just died but they told me before any assessment like the ADOS [Autism Diagnostic Observation Schedule] took place that my daughter was not autistic. I have had her assessed privately and she is classically autistic.
That is what she was told. Without carrying out an AON, HSE determined that this child did not have ASD but no explanation was given for her behaviours other than poor parenting.
So there is no way I am letting this happen to my second child. I would love to have OT intervention, physiotherapy and so forth if it exists. I wonder how many families have they done this to, how many people just accept it and why doesn't our Government actually care about its little people. I know that I am lucky. We are working and I have made many sacrifices so we can go privately when we have to. I do not understand why everything is such a battle.
I will read one more comment:
I was one of the parents that was contacted by telephone by an assessment of need officer and told that I needed to go through the new form over the telephone. I feel so cheated now. What do I do? I applied for an assessment of need before Christmas 2017 and it was officially to start on 10 February.
I am conscious there are time constraints but we have hundreds of the same comments.
Ms Ruth Gilhool:
Many parents from disadvantaged areas take out loans from the credit union or borrow from family and friends to get the child assessed privately. After a couple of years of waiting, where nothing is progressing in the child's behaviour and development, they feel they have no other choice. They will sell belongings on DoneDeal to get them done.
With regard to the comment that schools have the highest number of SNAs ever, what is written on paper is not necessarily what happens on the ground. One of our cases involves a child who is six years old and has extreme anxiety. The child has gone to school for a week since the beginning of April and has been signed out of school for anxiety reasons. The SENO visited the school while the child was out and carried out a review of the three hours of SNA time per day that the child had. Without any consultation with the parent or seeing the child in the school, the SENO took the hours away from the six year old. We have so many cases where we are finding that since the allocations were changed for SNAs and for the resource hours, the children being signed out of school are getting younger and younger. If one asks the Department of Education and Skills, one will not get the right numbers for the children being signed out of school because to be granted home tuition for those who are lucky enough, the children have to be still registered in the school so the school still gets the capitation money for that child. There is money floating around there somewhere and it needs to be investigated.
On the parenting classes, some are ASD-related and some are not. We only attended one.
The DCA Warriors were not consulted on the SNA resource hours allocation scheme. We are known to speak out on behalf of our members; perhaps the invitation got lost in the post.
I would like to have an investigation to find out the amount spent by the HSE on administration of interventions and assessments of special needs versus the amount spent on the assessment and the interventions given to the children because it appears that all that has changed is an increase in paperwork.
I have a few comments. I meet parents of children and young adults with autism all the time so I am familiar with all that has been presented by the witnesses.
I welcome the SOP but I have concerns. The fact that parents and the witnesses were not consulted is indicative of what is happening. That shows where the problem is. People are not being consulted while others are in little huddles making these decisions. There must be a paring back of that. Time and again I have seen parents and families described as problem families, "Everything is okay but they are problems". I was alarmed the other night to hear one of the national autism services staff say that it is unfair on people and parents who speak out because it means that the others who do not speak out do not get the services. My God, where are we going with all of this? We must work together.
The CSO figures have to be inclusive of children and young adults with autism. We cannot ever hope to address this issue if we are unable to quantify it. All of us must work together to try to get that done. All sorts of nonsense is included in the CSO figures. This issue is not going away and we need to confront and tackle it together. I want to know where the experts in autism trained. I find that many of the services have no expertise in autism and they operate on an ad hocbasis. I can only speak for the west, where I am from. It was suggested to me once that if one does not have expertise in the area, trying to make a child with autism eat cabbage is like asking me or somebody else to eat glass. There has to be an understanding of what the condition brings with it and unless we have the trained experts who can then deliver further training down through the system to ensure everybody is trained, we will not tackle it.
There is a long journey ahead on this. We will continue to work. We are meeting with all the national groups on trying to tackle this issue in an inclusive, progressive and timely way. Time is running out for many of these children. Time is also running out economically. As was said earlier, the cost of not having early diagnosis and early intervention will be phenomenal in the future. Leaving aside the humanity of it, the economic nonsense around all of this must be tackled.
I am sorry that the witnesses will not have time to reply but we will get an opportunity to talk again.
This is a huge issue. We have opened a huge Pandora's box. Once the committee has heard from the HSE, it will consider whether it needs to do additional work in this regard. Hopefully, there will be further opportunities for the witnesses to speak. On behalf of the committee I thank Mr. Allen, Ms O'Malley, Dr. Long, Mr. Stoker, Ms Lennon and Ms Gilhool for their time. We will suspend the meeting briefly to allow the HSE representatives to take their seats.
In today's second session, we are meeting representatives of the HSE to discuss the new SOP for the AON under the Disability Act 2005. I welcome Dr. Cathal Morgan, head of disability operations, HSE community operations; and Ms. Angela O’Neill, national disability specialist, HSE community operations.
I draw the attention of witnesses to the fact that by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to the committee. However, if they are directed by the committee to cease giving evidence on a particular matter and they continue to so do, they are entitled thereafter only to a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable. Any opening statements they make to the committee may be published on the committee's website after the meeting.
Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the House or an official either by name or in such a way as to make him or her identifiable.
Dr. Cathal Morgan:
We are grateful for the invitation to attend the meeting to address matters relating to the AON under the Disability Act 2005. I am joined today by my colleague, Ms Angela O’Neill. She is a national disability specialist and works with me as part of the national operations team. I understand that the committee wishes to gain greater understanding of issues surrounding the SOP, which the HSE regards as a necessary operational support to implementing the Act and which is currently the subject of an important consultation process with Fórsa trade union.
Since the commencement of Part 2 of the Disability Act 2005 in June 2007, the HSE has endeavoured to meet its legislative requirements as set out in the Act. Under the Act, any child born on or after 1 June 2002 is eligible to apply for an assessment of need. Children who qualify for an AON under the Act have a right to an assessment of their health needs arising from their disability; an assessment report; a statement of the services they will receive; and to make a complaint if they are not happy with any part of the process. The Disability Act outlines the statutory timelines under which an assessment of need must be completed. In effect, the assessment must be completed within six months of the application date with a further month to issue the report and service statement.
The numbers of applications for AON under the Act have increased steadily since its implementation in June 2007. In 2008, 2,535 applications for an assessment were received with 1,392 assessments completed. By 2017, the number of applications received had grown to 5,814 with 3,660 assessments completed. When originally implemented, it was envisaged that the assessment of need would apply to children aged less than five years and the Education for Persons with Special Education Needs Act, EPSEN, 2004 would address the needs of older children. The committee may be aware that the EPSEN Act has not been fully implemented and, following a High Court ruling in 2009, eligibility for AON was expanded to include all children born on or after 1 June 2002.
A 2016 review of the practice of implementation of this Part of the Act confirmed anecdotal evidence that the approach to AON is not consistent across the country. There is evidence that practice varies widely across the nine community health organisation areas. While a large number of guidance notes regarding AON processes have been issued since 2007, there has been no nationally standardised or agreed definition of "assessment of need". As a consequence, it is a considered view on the part of the HSE that the Act includes a number of definitions that are open to interpretation operationally, therefore, leading to an inconsistent approach as well as inequity in time afforded to "assessment" versus "support or treatment" interventions with children and their families.
While the Disability Act does not attempt to define an assessment of need, it does state that the assessment officer must prepare a report of the results of the assessment. This report must set out the findings of the assessment together with determinations on:
(a) whether the applicant has a disability;
(b) where the applicant has a disabilityi. a statement of the nature and extent of the disability
ii. a statement of the health needs (if any) occasioned to the person by the disability
iii. a statement of the services considered appropriate to meet the needs of the applicant and the period of time ideally required for the provision of those services and the order of such provision
iv. a statement of the period within which a review of the assessment should be carried out
In practice, because of a perceived legislative requirement to undertake a detailed and comprehensive assessment, assessment officers and clinicians have erred on the side of requesting and administering a wide range of assessments in as short a timeframe as possible. In some cases, children may undergo numerous assessments in a short timeframe where a period of diagnostic intervention might be more appropriate.
In an effort to standardise procedures and to facilitate timely assessments, the HSE identified a requirement to develop a SOP for assessment of need under the Disability Act. This SOP is intended to replace the suite of approximately 50 guidance notes issued since 2007 and will define the assessment. It is intended that an AON will comprise a PTA that will determine a child’s needs and will identify initial interventions that will be required to meet these needs. In developing this SOP, a consultation workshop was held in September 2017. Attendance included representatives from the following disciplines: assessment officers; liaison officers; community health doctors and paediatricians; occupational therapists; physiotherapists; psychologists; and speech and language therapists. Following this workshop, a range of email submissions were received and considered. Parent feedback provided through a parallel review of ASD services was also included in our considerations.
It is intended that the National Policy on Access to Services for Children and Young People with Disability and Developmental Delay 2016 will form the basis of the revised structure for the AON. The implementation of this policy has been identified as a priority in the national HSE operational plan for 2018. The decision-making process outlined in the access policy should be utilised to determine whether the child presents with the level of difficulty and complexity that would require referral to a children's disability service. Children who do not require a disability service would generally be deemed not to meet the criteria for eligibility for an AON.
It is important to note the implementation of the revised AON procedure and the national access policy are linked to the wider reconfiguration of children's disability services. This reconfiguration project is advanced and represents a change from an historical model whereby children access services based on criteria such as age and diagnosis. The new model is designed to facilitate equitable, timely access to services based on need.
The SOP is intended to ensure a standardised approach across the State in respect of the operational application of the Disability Act. Additionally, it offers an important opportunity to balance or ensure equity in terms of assessment and support interventions for vulnerable children and young people with disability. Regarding the current status of the SOP, it is important to reiterate that the HSE is engaged with a consultation process through Fórsa and hopes to successfully conclude this engagement in the coming weeks, prior to roll-out. This concludes my opening statement and together with my colleague, I will endeavour to answer members' questions.
I apologise as we invited the witnesses to appear at 11 a.m. I understand they did not get an opportunity to view the previous session but they would have seen the dissatisfaction of professional bodies and parents in how their applications, assessments, interventions and treatments are processed, as well as the delays involved. I appreciate that the y did not get the opportunity to see the meeting but they will find it instructive to look back at it.
I welcome the witnesses, in particular Ms O'Neill, who is from my home town. We went to school at the same time. I extend a special welcome to her and Dr. Morgan. I apologise as I must leave shortly as there is a group from west Cork that needs to be shown around etc. I will read the answers to colleagues' questions as well.
The current system of assessment of needs is not working. Everybody's heart is in the right place but there is clearly something wrong when more than 4,000 children are waiting for assessment, with three quarters of them waiting longer than three months. People from Cork and Kerry seem to wait longer for the AON and then for therapies indicated by the assessment. The population is high in Cork but even taking that into account, there seems to be a big problem there.
Why was there no consultation with the professional bodies who will be involved with the SOP before any plan was made? Why did the service not consult parents? The witnesses did not have an opportunity to listen to our previous session. Maybe it is a lesson for us but in hindsight we could have had all the groups in together to facilitate interaction between us all. It is too late for today but it could be an idea for the future.
This seems to be an administrative solution to a waiting list problem. I cannot see how this will in any way help the AON problem. Dr. Morgan indicates this is proposed to be a standardised system. If that is the case, surely the reconfiguration should be done throughout all the CHOs rather than two from nine.
Dr. Morgan referred to consultation and we have heard from others who refer to a complete lack of consultation. We had three groups before us earlier but we also had correspondence from a group representing speech and language therapists. It advised that the group was made aware that there would be some class of consultation process but it was at such short notice, its participation was impossible. Psychologists reported the same and the group representing occupational therapists appears to have been sidelined altogether. The groups told us that, in other areas, what the HSE proposes to do in 90 minutes takes 47 hours. The SOP indicates no family should leave the clinic without strategies to support the child or young person but the provision of these strategies in any meaningful way takes time. Time is precisely what the HSE appears to be taking away.
We may not be talking to the people directly responsible for policy, which is fair enough, but parents have described the process as a "battle" or "struggle". It is like they are going to war for services for their children. Like all Deputies, there are parents in my constituency who sell items to get the money to purchase services from the private sector. These people are going to loan sharks or going without. One parent who was appeared before the committee outlined how they sell their belongings on www.donedeal.ieto be able to purchase services from the private sector. That is a flashing blue light indicating a problem, and the SOP will not deal with that. If anything, it may exacerbate the problem.
I am worried that one of the professional representative bodies advised us that the SOP is in breach of its ethics, standards and guidelines and CORU's ethics and guidelines. I appreciate that the HSE is having a dialogue with Fórsa, which is fine for directly employed people, and that should continue. Is the procedure is in line with these guidelines? I am worried that a group is saying that it is not, as we could be putting much effort and energy into something that is not fit for purpose. We could debate all day as to whether it will work but it will certainly not if from the start it is in breach of the code of ethics or at variance with CORU's guidelines.
Reference was made to a "golden window", a time at which intervention can bring a meaningful difference to the life of a child. This is affected by a longer assessment process. Some parents are waiting up to four years to access services. The golden window is being looked at in the rearview mirror after a couple of months and every day that goes by, the child is further away from being able to realise his or her full potential. In what way will the SOP contribute positively to attaining that golden window? I do not believe it will but perhaps the witnesses can tell us how it will and we would love to hear it.
Some groups said the new SOP has been deferred and it is not in place. Dr. Morgan said the HSE is in consultation with Fórsa, suggesting that it definitely is not in place. As a former trade union official, I know the union would not allow that and SOP would be locked down before it could be started. It would be counter-productive to be in negotiations while also using the procedure. Why are parents getting phone calls to go through this process? It seems it is being used in some CHOs but not others. Where are those areas, why is it being used and how does this not conflict with the ongoing negotiations with Fórsa?
I thank the witnesses for attending. Will they lay out the proposed new process and address the issue of the time it is taking? I have no doubt that they are trying to do the best for children with special needs but, during the previous session, we heard from the professional bodies and parents that they were not consulted and that the standard operating procedure of the 90-minute assessment is not just a little inadequate, it is woefully inadequate. Some assessments occur over a 40-hour period. Will the witnesses explain what is the proposed new process? Is the 90-minute assessment an additional triage that leads to a more detailed assessment? How does the new process differ from the current process? Will the children receive more than 90-minute assessments? It seems to be the view of the professional bodies that a much more extensive and multidisciplinary assessment is required.
My second question is on the timing. Dr. Morgan laid out the requirement under the Disability Act 2005 that a child must have an assessment within six months of an application being made. We heard this morning that typically the time from a GP working with a parent to refer for assessment to the assessment taking place can be two and a half years. My understanding of what Dr. Morgan stated is that there is a statutory requirement for it to be no more than six months. Will Dr. Morgan indicate whether it is also his understanding that the period, which should be six months, is in many cases taking two and a half years or are we talking about two different periods? Why is it taking so long? What we heard this morning is that it can take two and a half years for a child to move from application to assessment and then a further year to move from assessment to intervention. Therefore, in a situation where parents bring their two and a half year old to a GP and say they think there might be an issue and they would like to have their child looked at, that two and a half year old will be six years of age before he or she gets an intervention. We universally agree that early intervention is critical. Does Dr. Morgan agree that is the current situation? Is it the case that a two and a half year old could be six years of age before he or she gets intervention? If it is Dr. Morgan's understanding, will he outline why that is? Is it that there is not sufficient funding for disability services? Is it that there is sufficient funding but it has not been possible to hire sufficient numbers of professional staff? Is it that the current process is incredibly inefficient and whilst there may be sufficient funding and staff, the process is so inefficient it means that the resources are not being deployed properly? Is it a combination of all three? Is it other things as well?
I thank Dr. Morgan for his opening statement. I want to address the inconsistencies across the country. Being from the western region, I am interested in what is, or is not, happening there, particularly in terms of front-line staff. I welcome the standard operating procedure. It is very necessary. It is alarming to hear that parents were not involved in it. It is indicative of how the process works in terms of parents not being allowed to be involved. I commend all the parents who, despite everything they have to deal with, have come forward and are very strong advocates for the services. Other parents benefit from that. Parents must be listened to but that is not happening.
I have some questions on the figures relating to the assessments. In 2017, there were 5,814 applications for assessment and 3,660 were completed. This means that over 2,000 assessments were not completed? What happened or is happening in respect of those children? Why are the models of best practice not replicated throughout the country? Is it purely a question of resources? What is the interaction between the autism services and the mental health services? Many children and young adults, because they have not received early interventions, reach a crisis point where they may have psychotic episodes. My experience is their being told by the HSE to go home, hide the knives and sharp objects and make sure the doors are locked at night and that it will let the Garda know if officers should respond to a call to attend at the person's house. Surely to God, the HSE has more of a responsibility than to leave these parents and families in such a vulnerable state. It is wrong for a young child, as a result of a condition that dictates his or her behaviour, to end up in a Garda cell and over-medicated. It is intentionally criminalising young people with the condition of autism. This is wrong and it has to be stopped. I am not assured that the things being put in place now will address it. There are young people and children falling between the disability services and the mental health services and nobody is taking responsibility. It should not end up with gardaí who do not have the necessary expertise.
How many people with expertise in dealing with autism are employed by the HSE? Speech and language therapists who do not have expertise in autism are trying to cope with impossible caseloads in order to deal with the condition of autism when they are not equipped to do that. Those are some of the issues I would like the witnesses to address.
Dr. Cathal Morgan:
I should respond immediately to Deputy O'Reilly's point that the standard operating procedure, in and of itself, will not resolve these problems. That is absolutely the case. If I thought it would , that would be great but it is not the case.
There are four key points in order to contextualise. It is the case that, as a result of population growth, we will see a lot more children coming, necessarily, forward for services. The factors that affect disability have changed quite dramatically. Senator Conway-Walsh mentioned autism. It is a very substantial factor that needs to be considered in the context of the delays we have in making assessments and offering diagnoses and interventions. One will see that pattern very clearly when one looks at it by CHO area. Very high numbers of people are waiting primarily because certain assessments and interventions need to take place. That is one factor. The second factor that is critically important to emphasise is the issue of access. What I mean by access is it is absolutely the case there are not sufficient therapy grades in the system. There is no doubt about it. A recent National Disability Authority report indicates that we will need at least another 400 therapy grades in the next three years or so in order to be able to respond adequately to presenting need. It is important to make that point at the outset. We could add in all these therapy grades, which we need, but if we do not deal with structural and practice issues, we could still end up with inequity in the system. From a structural point of view, what we have been trying to implement in each of the nine CHO areas, as a partnership between the HSE services and our colleagues in section 38 and section 39 organisations, which are the very familiar disability organisations that most people know about, are what are called progressing disability services.
Many of our therapy resources are delivered through the section 38 and section 39 organisations. What we are trying to do structurally is to have in place a network team that is made up of people from the various disciplines that are required to deal with very complex disability cases. The team would be overseen by a manager. Currently, services in each CHO area tend to operate in silos. We are trying to move away from that, which the sector has accepted, and to have much more of a network team approach whereby a lead clinician or manager would pool the resources to ensure that there is good assessment, good follow-up and intervention happening. In other words, that the resources would be used much more efficiently. This is because, at present, there is huge inequity in the system.
In addition, we have been trying to implement a national access policy. Some children, because of their complex set of circumstances, will require the involvement of a number of different disciples simultaneously. Some people may need to access only one intervention. For example, a person may need to see a speech and language therapist or a psychologist. The national access policy is a guide to steering people toward the right service, for example, advising a person that it is best for him or her to go to his or her primary care service. When there is a complexity of need, the person should be with a network team and then he or she would become part of the caseload of that multidisciplinary team.
The fourth element is that we believe there is a need to examine the way in which professionals work within the system, in other words, practice concerns. That leads me to the point we have been making regarding the standard operating procedure. We are not trying to dumb down or limit clinicians in terms of their autonomous working, rather we are trying to put a framework in place within which we can meet our statutory needs but also strike a balance between diagnostics and assessment versus intervention. I will ask Ms O'Neill to go into this in some depth to address Deputy Donnelly's question when he asked that we talk him through what the new standard operating procedure involves and the steps to be taken. Nowhere in the standard operating procedure are we saying that a full assessment should not be done. There is an opportunity to do a preliminary team assessment at an early stage. When children and families come forward, they are likely to engage mostly with an assessment officer who is not necessarily a clinician. An assessment officer has to rely on a multitude of disciplines to advise him or her on the best approach to take in an assessment of need under the Act versus full assessments that need to be taken on board in regard to doing intervention work. We are trying to see if we can get a balance between assessment and intervention. That is what we are trying to do with this standing operating procedure. I will ask Ms Angela O'Neill to describe the current system and what we are trying to move towards.
Ms Angela O'Neill:
To address Deputy Donnelly's query, the current position is that stage 1 of the assessment of need process allows for three months to do a desktop assessment of the referral. The application is submitted by the family and the assessment officer gathers additional information through a standard additional information form, under the new standard operational procedure, which is tailored to tie up with the national access policy and tailored according to the child's age. The pre-existing one is general for all age groups. The family complete that form, any available reports are submitted and the assessment officer determines whether the child needs further assessment. In most parts of the country, that stage 1 desktop assessment is being done within the three-month timeframe. In some of the Dublin areas and in one area in the south east, that desktop assessment is delayed. Once it is done, stage 2 of the process kicks in. There is a further three-month period allowed for stage 2, which is the clinical assessment. The date on which the assessment officer refers a child to an assessment service - be it an ASD service, a speech and language therapist, a hearing test or some another service - stage 2 of the process starts. There is a further three months allowed to complete that stage, which includes completing a clinical assessment and an assessment of need report. Shortly before the end of three-month period, the clinician will send a report back to assessment officer and he or she will complete an assessment of need summary report, the final report. That is then sent to a liaison officer. Therefore, the report is completed and it goes to a liaison officer who has a further month to engage with the services to prepare the child's service statement.
In developing a child's assessment of need report, I, as a clinician, would state that the child presents with X and he needs Y. When I declare the services he needs in the assessment report, that should have no regard to resources. I would list any of the services he needs regardless of whether we can provide them. In the service statement, I would have to say that he needs X and he will get it by such and such a date and that he also needs Y but, unfortunately, we cannot deliver that. The service statement sets out what we will provide and when we will provide it. There is a month allowed for completing that process. When that service statement is completed both the service statement and the assessment of need report are sent simultaneously to the parents.
Ms Angela O'Neill:
They would be, but if that is the case - and it is the case in some of parts of the country - the liaison officer would have to write back to each of those services and state, for example, "This is John's report and these are things you have said he requires. What are you providing and when?" There is a bit of toing and froing-----
What we heard earlier, if I am comparing like with like - and specifically we were given an example of a CHO south area - is that in some areas not only is time involved not seven months, it is three and a half years. In Wicklow, which comes under another CHO area, the time involved is not seven months or anything close to it. I have had to intervene on numerous occasions to find psychologists for young children with suicidal ideation. Even to a non-clinical person, these children were clearly in need of help. If Ms O'Neill agrees that the period involved in the southern area is not seven month but three and a half years, will she indicate what is the time involved is the nine CHOs throughout the country? I am not for a moment suggesting that she was trying to mislead the committee. There is a vast difference-----
Dr. Cathal Morgan:
That is 1,718 overdue. When one drills into that figure, the high numbers are specific to North Lee and South Lee in Cork. Kerry is more or less doing well. The figure is geographically specific. It is the major urban centres. The factors relate to the concerns I spoke about earlier. They need more therapy staff, but they also need to have a more structured way of working the progression disability services to get the teams in place. We can compare it to the mid-west and Limerick where this is working efficiently. Those areas have reconfigured and their numbers are quite different. There will be variances between the two systems and they will not be like for like, but CHO 4 stands out by a mile in comparison to the rest of the State.
Why is that specific area standing out? Is there a particular managerial issue? What is the problem in North Lee and South Lee? That is the area I am in, particularly North Lee. Last Friday night I was with a family and their teenage son. In April, it was established that he needed to be seen by a consultant. It is now ten weeks later and they have not even been given an appointment. I am aware that this is a different scenario but I spent an hour with the family in their house because of their concern. Why is there a particular problem in this area?
Dr. Cathal Morgan:
My assessment of the difficulty is that access to therapy grades is a problem in the area and more therapists are needed. There is no doubt about this. Separate to that is the need for a restructuring of how services are delivered so that there is more co-ordination between the various services that deliver therapy services. Some funded services do not play a role in the assessment process and they stand outside of that. Therapy services specific to the organisation that deliver those types of services. This is why we want to progress disability services into new network teams that are managed by a single person who has complete responsibility.
Dr. Cathal Morgan:
There are a number of factors, one of which is management posts. We recently got agreement to put the management posts in place. We have entered into a mediation process with the various lead agencies such as the large not-for-profit organisations that deliver many of these services. These organisations will have to take a lead agency approach and will have to become totally responsible for their therapy services in that area in Cork. We will achieve this now we have gotten through the mediation process. It is important that there will be a streamlined process around the operational procedure so there is some guidance for clinicians as to how they will interact with the assessment officer and the various therapists who are working on the ground. I am confident we can get through this, but it will take time.
Deputy Margaret Murphy O'Mahony asked about the consultation. Why was there a lack of consultation with parents and therapy groups in drawing up this process? This group would have had an important input into how the structures were put in place. Why was there a lack of consultation?
Dr. Cathal Morgan:
When I came to the post nearly 18 months ago and when Ms O'Neill came into the post midway through last year, we identified this as a key issue for us. Midway through last year our emphasis was on the reasons the service was not meeting its timelines. The detail I have given heretofore explains this. We put all of our energies into consultations with clinicians and staff on the ground through a consultation workshop. I am happy to accept that the professional bodies have remaining concerns, and if we were not sufficiently robust in our consultation process I am happy to take responsibility for that. The net point, however, will result in the standardised approach across the nine CHOs, which will require co-operation among clinicians on the ground working with assessment officers. This in itself will not be enough and I accept that there is a need for more therapy grades to be recruited. At the outset I made the point that even if we were given sanction for 400 new therapy posts covering speech and language therapists, occupational therapists, and psychologists and physiotherapists, it would take a number of years to recruit them. In the meantime, if those therapists walk into a system that has no structure to it, we will still end up with system with inequities in it, and there will be too much variance in practice. I must stress that this is not an attempt by us to constrain clinicians. The Chairman and I both come from a clinical background and we know it is a challenging process, including for the HSE. The Fórsa process is good. I accept that we probably should have gone into it much earlier but we made it known that we needed to move down this road. The current process we are in with Fórsa includes the main therapy grades and we are doing a line-by-line review. The specific issue of the 90-minute timeframe compared to a longer timeframe is open for discussion.
Ms Angela O'Neill:
Deputy O'Reilly referred specifically to the 47-hour timeframe and Deputy Donnelly referred to more than 40 hours. These times usually refer to an diagnostic ASD assessment, which can take that long. As a disability team we have had concerns about current times. When a child goes onto a waiting list for a diagnostic ASD assessment under the assessment of need, in areas such as Cork the children can wait for three years for this assessment. While on the waiting list a two and half year old child, such as the child Deputy Donnelly mentioned, is getting no services. I have reviewed files and when they have the 40-hour assessment, some of the children are deemed to not have ASD. The child, however, is 5 or 6 years old by this time and does not have ASD. He or she could have been accessing community speech and language therapy or community occupational therapy in the meantime but he was on the wrong waiting list for that time.
With the new SOP we are trying to ensure that when children are applying for an AON under the Disability Act we have the right children coming through the Disability Act gate. We would look at the access policy and the eligibility in that way and within the statutory timeframe. If we are to offer a PTA, it is only a viable option if we are to do so within a reasonable timeframe. It is not reasonable to offer a PTA after one, two or three years. If such an assessment can be offered within that timeframe and if it is determined that the child has needs, then mum and dad can be offered strategies to help the child in the meantime. The child may need a diagnostic ASD or a cognitive assessment, or speech and language therapy intervention, and is then placed on the waiting list for that assessment. At that point we at least know the child is on the right waiting list and that we have given the family some strategies to work with in the meantime. We do not say the child does not take the diagnostic ASD, which may take the 40 hours - even though we also need to do some separate work in fine-tuning the ASD assessment to make it more streamlined. We do not say that the child cannot have that full assessment, but somebody needs to be seeing the child much faster and putting him or her on the right path.
That appears to parents and others to be just another hurdle in their way.
I apologise that I must leave the meeting. I ask the Chairman to address my question on whether this measure is in use in some areas, and if it is under negotiation. This query is not specifically about the role of Fórsa; it relates to reports from parents who have received phone calls where the assessment is happening over the phone. Parents are confused because they have been told that the process was deferred.
Dr. Cathal Morgan:
The Deputy is correct. Fórsa agreed with us that we would tell each CHO to not use the new SOP while we are in this process and to continue with their existing guidelines, such as they are. There should be no implementation of this new SOP until we have concluded our consultation process.
Ms O'Neill is not, as I understand it, suggesting the assessment has been replaced and it seems to me to be a triage measure, so I will call it a "preassessment". I would hate this preassessment to become the statutory obligation because the Disability Act envisages the full assessment happening within six months. Can Ms O'Neill confirm the preassessment will not count as an assessment under the Act?
Will the HSE give an undertaking to meet the professional bodies on the 90-minute issue? Perhaps they agree with a preassessment and a duration of 90 minutes or three hours. It would be useful to meet them to determine what the time should be. A small number of therapy groups are involved - physiotherapists, occupational therapists, speech and language therapists and psychologists. They are deeply uneasy, from a clinical perspective, about what can be achieved in 90 minutes. It is not reasonable to expect someone to wait on the wrong list for two years and not get the treatment they need.
Ms O'Neill was going to give us the statistics for the nine CHOs. Can we have them?
Dr. Cathal Morgan:
I can give a commitment to meeting with the professional bodies. I have met them, apart from the members of the Psychological Society of Ireland who were not free on the day. One of the commitments I gave was to ensure we had ongoing dialogue regarding professional capacity building for therapy grades in the system, and to continually engage on that basis. I am happy to reconstitute the group again. Under the auspices of Fórsa, we have strong clinicians sitting around the table who link back to their professional bodies. I am sure we can address the issue of the time range so that clinicians do not feel they are compromised. We have also engaged with CORU and continue to do so, as we have to satisfy that body. We committed to getting back to its members following the consultation process to ask them if it was in contravention of the code of ethics or of particular regulations. We will not implement a SOP that would put a clinician in jeopardy. The HSE, as employer, has to take responsibility for this from the point of view of professional indemnity.
Ms Angela O'Neill:
We envisage that the preliminary assessment will meet our statutory obligations but the further assessment would be delivered as part of the child service statement. The Disability Act is an administrative process and is not at all child and family friendly. Our preference is for children and families to access timely and comprehensive assessments without going through the process, if at all possible. It is huge for a family to be asked to apply for an assessment under the Disability Act when they are just getting to grips with the fact that their two and a half year old is not communicating well. Our preference is for children and families to access timely and comprehensive assessments through the children's disability network teams. If they never had to use the Disability Act, that would be brilliant. We feel we can meet the statutory obligations to determine whether a child has a disability, what its nature and extent are and what the health needs are arising from the disability based on a preliminary team assessment.
We should not focus on the 90-minute issue because, following engagement with Fórsa and professional bodies, there will be a much wider time range. The Disability Act per sedoes not require us to provide the diagnostic assessments. The three-month timeframe for an assessment can be clinically inappropriate in the context of autism and it might be better for a child to attend a disability network service and have a diagnostic intervention which arrives at an ASD diagnosis over a much longer period. The Act can tie us up in knots that are not child and family friendly.
I apologise for missing the presentation but I was trying to resolve a medical issue for someone. I asked the groups that presented earlier about the availability of people with the required qualifications and they stated adequate numbers were available to fill any vacancies or shortfall. My understanding from the HSE presentation is that the officials feel that is not the case. Can they clarify the position regarding the availability of the professionals we need on the front line?
Dr. Cathal Morgan:
We have a census of the number of people working in the system. If we extrapolate the early intervention posts, which are the clinical grades working in children's disability services, we get a figure of just under 1,200. The National Disability Authority has done a lot of good work to estimate need for services and we will need an additional 400 therapy posts in the next three years or so. These will be across the range of disciplines such as psychology and occupational therapists, etc. Given the emphasis that has been placed on ASD, there is no doubt that we need to look much more clearly at behavioural support management. Parents talk to our clinicians every day of the week and tell us that, while assessment and diagnosis are important, they want help and support. The literature confirms that behavioural management supports are critical in the context of ASD. As Ms O'Neill said, while assessment is important, we need to intervene much earlier.
As to whether sufficient grades are coming through, we have panels but many people could be sitting on panels who are working for other services on temporary contracts and there could be a displacement effect. We need to carefully examine the degree to which those panels could result in a net throughput. We also have to link into training colleges to determine how many are coming through to meet our demand.
Deputy Donnelly asked us to go through the statistics and I can follow up on this in writing. We have broken the figures down by county. CHO 1 is the area covering Cavan, Monaghan, Donegal, Sligo and Leitrim.
There were 203 overdue assessments at the end of April.
Dr. Cathal Morgan:
There were 64 overdue assessments in CHO 2, which is the Galway, Mayo and Roscommon area; 186 in CHO 3, which is Clare, Limerick and Tipperary area; 1,718 in CHO 4, which is Kerry, north Cork, north Lee, south Lee and west Cork, of which only 35 were in Kerry - I emphasise the geographical distribution of those numbers - 406 in CHO 5, which is Carlow, Kilkenny, Tipperary south, Waterford and Wexford; 50 in CHO 6, Deputy Donnelly's constituency area, covering Dublin south east, Dublin south and Wicklow; 547 in CHO 7, which is Dublin south city, Dublin south west, Dublin west, Kildare and Wicklow west; 403 in CHO 8, which is Laois, Offaly, Longford, Westmeath, Louth and Meath; and 484 in CHO 9, which is Dublin north, Dublin north central and Deputy north west. There were a total of 4,061 overdue applications under the statutory assessment of need at the end of April.
Does Dr. Morgan have figures to translate that in terms of waiting times? For example, we were told of waiting times of two and a half or three and a half years in the south. Can Dr. Morgan translate the total number over six months into waiting times?
Those figures are absolute numbers. Can Dr. Morgan give figures per head of population regarding children? There were 50 overdue assessments in Kerry and over 1,000 in Cork. Is there a disparity in terms of the number of people to whom those figures apply as opposed to the absolute numbers per area?
Ms Angela O'Neill:
We need to look at that in more detail. I have previously looked at the number of applications for assessment of need compared to the population of children in an area and aside from either Dublin 7 or Dublin 9 - I cannot remember which - and Cork, which have higher proportions of referrals than one would expect, most are in line. However, we need to get further detail on that.
Are all private assessments acceptable to the HSE? I am aware of people who obtained private assessments from qualified individuals and who were then told that these were not acceptable to the HSE. Can the witnesses give some guidance to parents on whether a private assessment for which they may have to beg, borrow or steal the money will be acceptable to the HSE and will allow them to access the other services and supports that are needed?
Ms Angela O'Neill:
There is inconsistency across the country. A parent may approach a psychologist, a psychiatrist or other professional for a private ASD assessment and receive a uni-disciplinary report stating the child presents with ASD. Many of the services that deliver ASD diagnostic and intervention services require a multidisciplinary assessment and will not accept a uni-disciplinary report. There is no denying that such multidisciplinary assessment is of significant benefit. What creates a difficulty is that a uni-disciplinary assessment has in the past allowed families to access educational services such as an SNA or an ASD class or similar. However, HSE or HSE-funded ASD services require a multidisciplinary report and need to start that assessment. That is not the blanket situation across the country. In some parts of the country, uni-disciplinary reports are accepted and the child will be put on an intervention waiting list, although that may change.
Is that communicated to GPs? If GPs are the first point of call, what clear pathway do they have in terms of guidance from the HSE on where to guide and direct people? We earlier heard that parents are accidentally finding out about the limited services that exist and how to access them. Is there a written access pathway available and presented to all GPs to help them to guide parents?
Dr. Cathal Morgan:
There is. It is called the national access policy. However, it has not yet been implemented. The national access policy is a guide to all clinicians and parents on how to navigate and access the system. If a child needs one intervention such as speech and language therapy, ideally he or she should go through the primary care system. The children's disability network teams would work with cases involving a complexity of needs because they have the range of disciplines available to them.
I understand that. I am trying to understand communications with GPs. Have GPs currently got some kind of guide which tells them exactly what advice to give to parents? Can a person going to a GP be certain that the GP has the full information?
Ms Angela O'Neill:
In areas where the services have reconfigured to network disability teams, the pathway is fairly clear for GPs such that if a child is living in area X and presenting with significant difficulties, he or she should go to team A. In areas where services have not yet reconfigured, it is almost impossible to navigate the system and it is difficult for families, GPs and teachers to know what to do because one service caters for people over six with intellectual disability, another for preschoolers with intellectual disability and another provides services for physical disability but if the child has both, nobody knows where he or she should go. The reconfiguration will address that but it is very unclear in some parts of the country.
Ms Angela O'Neill:
Its services for those younger than six years have largely been reconfigured. The school-age services need to be reconfigured in that area. As Dr. Morgan mentioned, now that we are almost ready to recruit those posts the children's disability network manager will allow us drive the reconfiguration in all nine areas forward. We hope they will all move ahead early in 2019.
Patient testimony is very important. We heard testimony from a parent on behalf of the patient this morning. There is a huge gap, two to three years, between the assessment and the service being delivered. That is where the system is breaking down. In general practice, I would have no idea whatsoever how to navigate the system. I receive reports from therapists but, apart from that, I have no influence on how a child accesses a service. None of my colleagues in the mid-west would know how to do it. There is no pathway. We would not be aware of any pathway and we do not have the possibility of referring people to the appropriate pathway.
There were other witnesses here earlier who mentioned this two to three-year delay. There is a 90-minute assessment versus the 47-hour recommended under the National Institute for Health and Care Excellence, NICE, guidelines. I understand that could be classed as a pre-assessment. A witness who appeared before us earlier - I refer to Ms Gilhool, a parent - spoke of attending a parenting course before her child was assessed. These seem to be delaying tactics to fill in time while the child is being assessed. The issue for me and for many members is that if this critical window in a child's development is missed, it can never be got back. Have the witnesses made any financial or economic assessments of the implication of not intervening until a child is five, instead of when they are two years of age, the cost of filling that gap? Are there any figures on the economic and emotional cost of that to a family?
For the Chairman to say that the pathway in parts of the country is unclear is very challenging for people. Like him, I have worked in primary care and I too would not have any idea how to refer or help somebody. It must be absolutely heartbreaking for a parent to see their child regress after eventually getting through this pre-assessment, been on the waiting list and the parents going on the course, when they know there is something wrong with the child which requires an intervention that costs money and are not able to have it for two to three years. Do the witnesses think it acceptable for children in this country to be victimised or treated in such a way? I do not think we would leave an adult two or three years after being assessed. We would get away with that. Will the witnesses comment on the financial and other costs of delays for families, whether the 90-minute pre-assessment is being done anywhere else or is it an Irish solution to kick the can down the road, and the same for the parenting courses? Sending a parent on a course when there is no diagnosis or assessment of a child is just another way of filling in time.
Dr. Cathal Morgan:
We indicated at the outset that this standard operating procedure does not solve the problem. We made very clear that there has been very little to no investment in children's services over recent years. The National Disability Authority has told us there is evidence to suggest we will need upwards of 400 therapy grade posts in the children's disability services. There is no doubt that investment is absolutely required. Investment with structures and pathways identified for everyone, most particularly for parents, needs to happen. This can be done by the reconfiguration of our existing disability services under what is called progressing disability services so that each community health organisation has a range of approximately 96 networks made up of individual teams with all those disciplines working on those teams, dealing with and providing services to children who have complex disability needs. We feel we have come a fair distance, have had some positive results recently and have agreement with our colleagues in the section 38 and 39 services because many of the therapy services are delivered through that channel. In order to manage that we have agreement on putting a management post in place to make sure there is better and more effective utilisation of those posts. At present, therapists work for the organisations that employ them in that capacity. That is not to say they want to do that. Everyone has agreed that we need better co-ordination between services. In other words, better management of services.
Resources for access are required in children's disability services. Everyone says the same thing. When that is done, the pathway will be very clear to parents, clinicians and practitioners and we will be confident in saying that. There are concerns about the time range for doing an assessment. This is formally part of a consultation with Fórsa. I agreed with Deputy Donnelly that I will meet the representative bodies again to have a session with them on their concerns about this. That commitment has been made.
Sometimes to do a full diagnosis of certain disorders, for example, ASD, requires quite a long time. It needs to be done carefully because the last thing one wants is to apply a tag or diagnosis that does not fit because that person becomes tagged with that for ever.
Ms Angela O'Neill:
The 90-minute engagement is subject to the Fórsa engagement and my instinct is that the outcome of that will be that we will have a wide range of times. We will not be taking the 47 hours referred to because we will not be able to meet our statutory obligations if all our assessments take that length of time. It is key that even if an ASD assessment takes 47 hours those hours are often more appropriately spread over a much longer period than the three-month period for which the Disability Act 2005 allows. For some children, a period of diagnostic intervention before finalising a diagnosis of ASD would be more appropriate but the Disability Act 2005 requires us to provide an assessment of a child within a particular timeframe. In order to meet the requirements of the Disability Act 2005, therefore, we need to separate that from the needs of a child and family to have a diagnosis and appropriate intervention services. The Deputy is absolutely correct it is not acceptable that children should wait two or three years. In some areas resources are being used almost exclusively for assessment and children get their diagnosis and no intervention.
We are trying to balance the need to do a comprehensive assessment with the need to provide intervention for children. We need to fine-tune our assessments a little better so that not all of the resources are spent doing the assessments. When a family is told that a certain diagnosis has been agreed on, it should not be told to go off because nothing can be provided for it.
Would it be possible for Ms O'Neill and Dr. Morgan to provide a timeline or schematic outline of how the process works from the point of referral to the point of assessment to the point of delivering a service? This would help us to understand how the process works and what the target would be if we were in an ideal situation. Today's meeting has raised a huge number of issues, many of which are unresolved. We may have to return to this huge topic again. We are facing time constraints today, unfortunately. On behalf of the committee, I thank all the witnesses for attending. I apologise for the delay in bringing them in. I am sorry we are running short on time because we could run another meeting on this issue straight after this one. I thank Dr. Morgan and Ms O'Neill for coming in on behalf of the HSE disability services.