Report for Autism Spectrum Disorders in the Dublin South West Constituency

Report for Autism Spectrum Disorders in the Dublin South West Constituency

The workshop consultation was developed and convened collaboratively by members of Minister Zappone’s team, Professor Louise Gallagher and members of the Autism Research Group, Trinity College Dublin.

Submitted by: Prof. Louise Gallagher

Chair in Child and Adolescent Psychiatry

Trinity College Dublin

Minister Zappone’s team:

Ms. Claire Murphy, Constituency Manager

Ms. Magdalene Hayden

Mr. Darragh Genockey

Dr. Michael O’Loghlen

Ms. Niamh Carroll

 

Autism Research Group, Trinity College Dublin (TCD)

Professor Louise Gallagher, MB MRCPsych PhD FTCD,

Chair in Child and Adolescent Psychiatry and Consultant Child and Adolescent Psychiatrist

 

Dr. Jacqueline Fitzgerald, PhD, Post-doctoral

Ms. Niamh McDevitt, MSc, PhD student

Ms. Sarah-Marie Feighan, MSc, Research Assistant

Executive summary:

This report provides a qualitative evaluation of the experiences of parents of children with Autism Spectrum Disorder (ASD) in trying to access services for their children. Recommendations are provided to address the critical issues, at both local and national level, to improve the equitable provision of services to people affected by ASD. ASD is an enduring condition that poses a significant challenge to State service provision across a range of services including health, education and social care. A range of supports are required for the person with ASD throughout their lifespan. Significant deficits in service provisions are a longstanding challenge within state services, leading to issues with access to appropriate diagnosis and treatment and access to appropriate education.

This report was commissioned by Dr. Katherine Zappone, TD in the Dublin South West constituency to qualitatively capture the current gaps in service provision, compare these with best practice and to obtain recommendations as to how best to address these gaps. A town hall workshop was convened to canvass qualitative experiences from parents and caregivers of young people with ASD. The discussions were assessed thematically to identify the critical issues experienced by parents/caregivers. These are then discussed with some recommendations to address the acute issues and consideration given as to how national policy might be formed.

The workshop was well attended and engagement from participants was high. Significant gaps in service provision were identified by the majority of participants that illustrated significant problems with service provision. These included the absence of critical posts to enable appropriate implementation of statutory responsibilities under Disability Legislation. Additional clinical services were lacking in trained personnel to provide services in line with international best practice. To address service deficits the HSE was funding a private agency to conduct assessments, but the standards and quality of these assessments were poor. As a consequence children were not accessing appropriate diagnosis or interventions and there were significant deviations from best practice.

Problems with accessing appropriate educational placements specific to ASD needs were also highlighted. Children particularly had difficulties accessing placements in their own locality. Admissions procedures to schools were unclear and training and awareness of education professionals was reported to be lacking at times. Access to clinical supports in the school setting was limited. There is very limited availability of secondary school places and the model of education does not always meet the needs of adolescents with ASD.

The process of application for social welfare provisions was reported to be difficult and lengthy. Applications were frequently refused on first application and required a further lengthy appeals process. Parents reported they had spent months putting together applications for these supports. The processes are likely to significantly disadvantage individuals with poor literacy or English as a second language.

Participants in the workshop reported a high level of personal burden as consequence of caring and advocating for their child with ASD. Language of combat was frequently used to describe the struggle to access services and supports. Many had paid personally for assessments and therapies for their child to bridge service gaps and some had borrowed money from family members to do so. Confusion, anxiety, feelings of isolation and abandonment were frequently articulated. Participants reported that they often neglected other family members and that all their energy was consumed in trying to get resources for the child with ASD.

 

The workshop highlighted that many children with ASD were not accessing diagnosis, treatment or education services aligned to best practice. Accessing early diagnosis and intervention is critical in ASD and has been shown to reduce later requirements for services. Currently the needs of children with ASD in Ireland are not being met and lack of service provision is creating further disadvantage that is leading to enduring and more severe deficits. An urgent response to the needs of people with ASD is required.

 

The deficits highlighted in this report need to be rapidly addressed to bring practice in line with the requirements of the Disability Legislation and best practice. Vacant posts within the HSE need to be filled and clinical services appropriately resourced to adequately deal with the challenge of ASD. There has been a tendency to move away from specialist ASD services in favour of generic services however this is not recognised as best practice elsewhere, e.g UK National Institute for Clinical Excellence guidelines. National policies for ASD service provision across a range of state services are required. This is likely to be best addressed by first developing a national strategy committee to scope this and conduct further evaluations of service provision nationally.

Background:

Autism Spectrum Disorders (ASD):

ASD refers to a group of disorders that are characterised by key deficits in communication, social interaction and a pattern of restricted and repetitive behaviours. In practical terms this can result in delayed language or no speech and language development, poor interaction with others and social isolation and a preoccupation with repetitive type activities, rather than engagement in age and developmentally appropriate play based activities. Additionally people with ASD frequently have deficits in the areas of sensory and motor functioning that are significantly impairing. People with ASD may be impacted by motor disorders such as dyspraxia and many also have significant issues tolerating sensory

stimuli such as smell, taste and noise that impacts on their ability to function normally in the environment. Around 50-70% of individuals with ASD have an intellectual disability. Medical comorbidities are common with a significant number impacted by epilepsy, gastrointestinal problems and sleep difficulties. A large majority of individuals with ASD, in excess of 60%,will also present with another mental health comorbidity such as attention problems or mood and anxiety disorders. In addition, behavioural problems such as aggression and self- injurious behaviour are also common.

ASD conservatively affect around 1% of the Irish population (Boilson et al, 2016) similar to prevalence rates elsewhere. Males are affected on average around four times more commonly than females, although the condition is more difficult to identify in females and may therefore be underdiagnosed. ASD represents the commonest developmental disorder impacting children and is more prevalent than paediatric AIDS, cancer and diabetes collectively. It impacts on the ability of the individual to participate meaningfully in education and employment. It is associated with reduced income for parents and caregivers, frequently as a consequence of giving up work or reducing working hours to provide care. It is a lifelong condition that requires long-term arrangements for health and social service provision and access to education and employment supports. ASD is associated with a huge economic, social and personal cost to society and represents a significant challenge to be addressed. There is a vibrant ASD research community dedicated to understanding the causes of ASD and identification of improved treatments and services. Consequently there is a rich literature outlining current best practices informed by the evidence.

Best practice autism assessment and diagnosis:

Early identification is accepted evidence based best practice for ASD. There is no biological test for ASD. Current practice relies on the earliest possible identification of ASD through a multi-disciplinary assessment by skilled clinicians. This process is described in several guideline documents, for example:

Best Practice Guidelines for the Assessment and Diagnosis of Autistic Spectrum Disorders for children and adolescents (birth to 18 years), Autism Spectrum Disorders Special Interest Group, The Psychological Society of Ireland.

National Clinical Institute for Excellence (NICE) guidelines – Autism in under 19s:recognition, referral and diagnosis NICE guidelines [CG128]

Identification and Evaluation of Children With Autism Spectrum Disorders, Johnson and Myers, Paediatrics 2007

Broadly speaking this process requires a thorough assessment of the developmental needs of the individual (speech and language, sensory, motor) in addition to the expert assessment of the presence of ASD symptoms.

The Health Service Executive is mandated to provide assessment of children and young people where there are concerns regarding development under the Disability Act, 2005. Part 2 of the Disability Act 2005 describes the process for Assessment of Need, Service Statement and Redress. This provides for the establishment of Assessment Officers with the responsibility to arrange for the assessment of individuals and to provide an Assessment report on completion of the process to the individual applying for the assessment (typically the parent/ caregiver). Under the act, the report should specify if an individual has a disability, the nature and extent of that disability and the associated health and educational needs. It should also provide a statement of the service needs and the timeframe for a further assessment. The assessment officer also has responsibilities to ensure that the communication between the professional conducting the assessment and the applicant is appropriate and information regarding the process and the outcome is provided. Following the implementation of the Disability Act in 2006, Assessment Officer positions were established nationally in each health area. The Act also sets out the requirements for a Liaison Officer or Case Manager within the HSE who must provide the applicant with a Service Statement within a month of the completion of the assessment.

Best practice ASD intervention:

ASD intervention is founded on the principles that early detection and intervention are key. Neuroscience and child development research have highlighted the important role of early intervention in the early years when brain growth and developing brain function are critical to the development of future skills and knowledge.  Several large scale clinical trials of early interventions have shown demonstrable effects up to five years. The majority of well designed early intervention trials have focused on behavioural interventions such as Applied Behaviour Analysis (ABA), The Early Start Denver Model (ESDM) and interventions targeted towards improvement in areas of deficit ( e.g.) communication or sensory/motor deficits. Both ABA and ESDM have shown moderate effects on language, adaptive and cognitive functioning. Early intervention services have also been shown to offer positive cost-benefits with a downstream reduction in the costs to health services.

In The NICE guidelines [CG170] Autism in under 19s: support and management, there are recommendations for the establishment of pathways and processes of care to ensure that the individual with ASD has access to health, mental health, disability, education and social care. The implementation of case managers or key workers is recommended to coordinate care. In addition NICE recommends the development of local autism multiagency strategy groups to coordinate referral and management of care.

Context for the current report:

This report was based on the documented experiences of parents/ caregivers of children and young people with ASD in Dublin South West. The Dublin South-West Local Health Office encompasses Tallaght, Walkinstown, Crumlin and Drimnagh and the Local Health Office is based at Old County Road Health Centre, Crumlin. The current arrangement of services is being revised in the context of the reorganisation of HSE service into Community Health Organisations (CHOs). In this context Dublin South West is part of CHO7 (Kildare/ West Wicklow, Dublin West, Dublin South City).

Existing services:

The organisation of services within this Local Health Office includes primary care therapy services (e.g. physiotherapy, occupational therapy and speech and language therapy), early intervention and school age services. The organisation of disability services in this area is managed by a Disability Manager. Several regional entities also provide services within this LHO which include Beechpark Autism Services and a regional Community Paediatrics service based at Tallaght Hospital. Disability services are currently undergoing national reconfiguration as part of Progressing Disability Services. As part of this reconfiguration Disability teams will be configured from existing teams (EI, school age and autism specialist team) to provide generic teams providing services to all individuals with a disability. Currently there are significant gaps in service provisions and key health service professionals leading to problems accessing health and education services for children with suspected or diagnosed ASD.

Tallaght Parents Autism Support Group (TPASG):

The TPASG is a local parent led advocacy group established to provide support and information to parents and caregivers affected by ASD in Tallaght. The group empowers parents to act as advocates and aims to promote awareness, acceptance and greater opportunities for those affected by ASD in society. Supports are provided online through a website and social media, workshops and talks, and through working co-operatively with community organisations. TPASG were involved in the development of the current report through their membership in consultation with the Constituency Office for Dr. Katherine Zappone, TD, Minister for Children and Youth Affairs.

Terms of reference for meeting regarding ASD services in South-West Dublin:

The current report was based on a request from Dr. Katherine Zappone, TD, in her capacity as a local representative in Dublin South West. Through her constituency work Minister Zappone encountered a significant number of constituents who identified ASD as an issue for their family and highlighted to her many difficulties they experienced locally in gaining access to assessment and intervention. Minister Zappone requested that a town hall meeting be convened with representatives of the ASD community to highlight the critical issues that need to be addressed. Representatives from her constituency office worked with the TPASG to identify key themes for discussion. Minister Zappone’s constituency office contacted Prof. Louise Gallagher, Professor in Child and Adolescent Psychiatry TCD and Consultant Child and Adolescent Psychiatrist in the HSE for support in facilitating this community engagement. The purpose of the engagement was to identify and highlight the key issues and experiences locally, to summarise these in a report and to make recommendations as to how to best address the highlighted issues.

Identification of key areas for discussion:

Through examination of information gathered during canvassing and engaging in discussions with the TPASG leader, Tara Hamilton, several key areas were identified as priority for the workshop. Areas were split into two topics and then broken down as follows:

Topic 1: Assessments and Services

Accessing information on assessment processes for children.

Assessment of needs process.

Experiences of early intervention services.

School age (primary and secondary) access to appropriate services.

Transitioning to adult services.

 

Topic 2: Access to educational and social supports

ASD preschool, primary and secondary school placements.

Accessing Home tuition and July Provision.

Accessing SNA support and resource hours.

Social welfare entitlements (disability allowance, carers allowance, domiciliary allowance and medical cards).

Town Hall process:

A meeting was convened in Tallaght Library on June 10th 2016 between 11am and 2pm. The meeting was attended by parents and caregivers and a small number of educational professionals from Dublin South West who had been informed about the meeting through the TPASG network. In all around 35 individuals participated in the meeting. The meeting was co-convened by members of Minister Zappone’s constituency office and members of the Autism Research Group, Trinity College Dublin.

The meeting commenced with a brief explanation of the terms of reference, the format for the meeting and the critical issues to be discussed. Small groups were formed, each with one facilitator. The facilitators were present to record the themes discussed and to facilitate contributions from all participants. The facilitators were not involved in shaping the discussion. Two small group sessions were convened. The first discussion was focused on health services and the second on education services. At the end of the meeting a large group discussion was undertaken with feedback given by a participant representative of each small group.

Emerging themes:

Assessing information regarding services for people with ASD:

Lack of availability of straightforward, easy to understand information regarding health and education service provision and social supports was a cross cutting theme in the workshop. Information was reported to be difficult to access. The language used was confusing and difficult for non-professionals to understand. In particular there was limited available information regarding processes and pathways relating to diagnosis, intervention and school entry. Allied to this, participants were confused about the roles of health and education service professionals. They were unclear about the services they should access for their children. Participants reported that they chiefly relied on friends and advocacy groups to provide them with information and help guide them through processes.

Recognition of early signs of ASD:

Some parents reported that there was limited recognition of early signs of ASD among the professionals they consulted. There was a tendency for professionals to dismiss concerns regarding development when first highlighted. One participant reported their concerns were dismissed on the basis of the child’s gender – e.g. “He’s a boy”, as an explanation for language delay. Another participant suggested that it would be helpful to have some awareness of ASD when a baby is born to help a parent recognise potential signs and symptoms. The latter suggestion is not currently part of international best practice.

The diagnostic process for ASD: Assessment of need:

The assessment of need process (AoN) (see above) is typically the first step in accessing a

diagnosis for ASD in the public health system in Ireland. A parent who is concerned regarding their child’s development may apply for an assessment of the child’s needs. The Assessment Officer in the community where the child lives is typically tasked with helping the parent access the appropriate assessment. The Assessment Officer post in Dublin South West is currently vacant and consequently it is currently not possible to make an application for AoN.

Participants reported dissatisfaction with the quality of information available regarding the AoN process. They reported that the process was poorly explained to them. Many had relied on information from friends who had been through the process or from support groups and parents of older children with ASD. Participants highlighted a desire for standardised information, e.g. in a booklet that summarises the Assessment of Need process. They also thought that it would be helpful to have someone to talk to who could explain the process and what to expect.

The application process for AoN was reported to be relatively straightforward. Typically an initial assessment appointment was offered within six months. However after this they were unclear about the process and this had been poorly explained to them. Some reported feeling abandoned.  Following the initial appointment, participants reported that there were long waiting times for appointments. Almost all the participants had sought private assessments for an ASD diagnosis which they had paid for personally.

Participants reported that the AoN process in Tallaght was outsourced to a private agency funded by the HSE. This is due to significant resource deficits within the HSE multi- disciplinary teams locally. Dissatisfaction was expressed with the use of private agencies to provide assessments. It was reported that individual private professionals conducting the AoN assessments did not operate as a multidisciplinary team and that they did not know each other. As a consequence the process was disjointed and poorly co-ordinated. Some participants reported reluctance on the part of professionals to provide a diagnosis of ASD. Many participants did not receive a diagnosis for their child at the end of the process which they found difficult to understand. They were informed that the AoN process is not a diagnostic process. At this point many received a further referral to another long waiting list for an autism assessment without accessing intervention for their child. Participants were unable to access specialist ASD preschool or school placements for their children in the absence of an ASD diagnosis. This highlighted the conflicting processes in health and education services that serve to disadvantage a child with ASD.

Due to long waiting lists, HSE funded assessments and the necessity for diagnosis to access educational placements, the majority of participants accessed private diagnostic assessments for their children. This was effective in gaining access to educational provision, e.g. Home Tuition and specialist ASD placements. Unfortunately many experienced barriers trying to access clinical services for interventions with a private diagnosis. Private assessments are not regarded as sufficiently rigorous by clinical intervention services, e.g. Beechpark Autism Services. Clinical services frequently requested more clinical information necessitating further clinical assessments. Several children of participants underwent two or more diagnostic assessments prior to receiving any intervention. In the most extreme case, one participant reported that the child received three assessments between 2.5 years and 7 years prior to receiving intervention.

The process through the privately outsourced AoN assessment was lengthy. The pathway at the end of the process was unclear or not communicated. Reports were significantly delayed in being completed. One participant reported that an AoN assessment was commenced for their child in March 2013 but the report was not completed until June 2015. Other reported delays of up to a year in receiving reports. Delays producing reports had major impacts on accessing appropriate resources for their children. One participant reported that a delay in providing her son with a diagnosis impacted on his ability to access resources to complete Leaving Certificate examinations. This necessitated a private assessment paid for by the parent to ensure that the supports were in place.

The standards and quality of private assessments conducted as part of the outsourced AoN process was also a cause for concern. Reports used jargon that participants had difficulty understanding and there were inconsistencies in the diagnostic terms used, e.g. different versions of diagnostic classifications used. At times access to intervention services was denied due to conflicting terms in reports. Additionally reports were sent to many parents in the post without any direct verbal feedback from the professionals involved. Some parents reported that professionals had refused to send copies of their reports to their child’s general practitioner. More significantly participants reported that there were significant errors in some reports, with incorrect patient names or other personal details included. The quality of the reports, as outlined by participants, reflected limited clinical overview of the whole diagnostic process that is out of keeping with best practice.

Accessing clinical intervention services:

Upon completion of the AoN process a Report and Service Statement is required by the legislation to summarise the needs and service requirement of the individual. The Assessment Officer completes the report. The responsibility for identifying where service provision can be accessed lies with the Liaison Officer (see above). Currently the Liaison Officer post in South West Dublin is also vacant. Participants reported that as this post is vacant no children are currently being placed on waiting lists for services. This was a source of considerable frustration and distress.

Early intervention services:

Early intervention services may be provided by a number of agencies depending on the child’s needs and the outcome reported in the diagnostic process. In South West Dublin these agencies include the HSE Early Intervention (EI) team, HSE Beechpark Autism Services, HSE primary care. In addition a number of community based agencies and Disability services may provide some support.

The referral processes and clinical care pathways through HSE community services were unclear to participants. Participants experienced being passed from one team to another without accessing intervention. One participant reported that their child was removed from the primary care SLT waiting list when it was decided to refer the child to the AoN process. Additionally the limited communication that exists between teams and professionals led to a sense of ‘starting over’ each time. Participants were unsure what actual services existed and what the different teams were mandated for. Participants reported that a drop-in service was provided by the EI team but they weren’t sure whether it was for psychoeducation or for behaviour management support.

Inability to access EI created significant anxiety for participants. They all understood EI as best practice in ASD as it supports the development of functional skills and language and prevents the development of maladaptive behaviours. All of the participants felt distressed that they were unable to access appropriate interventions. They were concerned that they were losing time at a critical point in their child’s development. This was particularly frustrating for one parent who had accessed a timely diagnosis when the child was very young but not accessed EI. Others reported that their children were presenting as very stressed due to communication problems and anxiety.  Some participants were worried that they might inadvertently mismanage their child’s condition or use incorrect approaches and cause the condition to deteriorate further. In association with this, they felt that there was little education for parents regarding interventions to help them make informed choices.

Due to limited access to EI, participants had almost universally paid for private therapies for their children. Not all parents could afford this and some reported that they had borrowed money to pay for therapies. There was concern relating to lack of clinical oversight of private interventions. Additionally participants reported that they were fearful that access to publicly funded services would stop if they admitted to paying privately for interventions. Some reported that they had experienced being taken off waiting lists for interventions in these circumstances. As a consequence there was a tendency to withhold information regarding private therapies from HSE professionals, further adding to difficulties in appropriate case management.

Resource provision appears to be critically reduced in several areas. The staffing level on the EI team was reported to be reduced currently and the psychologist post on the team was vacant. Associated with this participants reported that available interventions were scarce. Some participants reported that their children had received some Speech and language therapy (SLT) interventions. These were offered as a block of therapy comprised of six sessions, one hour per week. On completion children had been placed on the waiting list again and some waited two years for further SLT intervention. This caused frustration, in that it was difficult to sustain progress achieved during the initial intervention.

Clinical intervention services for school age children:

As described above there are a number of services mandated with providing services to school age children in South West Dublin. These include the HSE school age team, HSE Beechpark Autism Services, Lucena Child and Adolescent Mental Health Services, Section 38 disability services (e.g. Cheeverstown and St. John of God’s Islandbridge who provide some services in Dublin South West) and the HSE primary care services. Clinical supports should be available to children placed in ASD specialist classes through Beechpark Autism Services. Children in mainstream school should receive interventions through the School Age team or primary care depending on the level of need.

Parents reported great difficulty in accessing all of these services. For example the waiting list for Beechpark Autism Services is in excess of two years. Some participants reported that clinical supports were not accessible to children or adolescents placed in ASD special units. Some schools locally had applied for clinical services but were not in receipt of these from HSE service providers a year later. Very limited clinical supports were available to children placed in mainstream educational placements. Some participants also reported that the HSE School Age Team in Dublin South West was unable to provide clinical supports for behaviours that challenge.

There were significant reported difficulties in accessing services for children with dual diagnosis. Dual diagnosis refers to children with ASD and a co-existing condition. The latter may refer to a coexisting medical or mental health condition or physical or sensory disability. Some reported that co-existing conditions had not been recognised and were undertreated. Participants reported that dual diagnosis sometimes resulted in exclusion from services, as professionals reported that they were not equipped to deal with complex needs. Moreover some reported that having more than one diagnosis led to loss of service provision. Various examples were cited, e.g. a child with a pre-existing diagnosis of dyslexia and dyspraxia lost services when an ASD diagnosis was established at age 10 years.

Accessing education:

Participants reported that identifying and accessing appropriate education provision for their children was associated with a high degree of stress. They talked about the need to ‘fight’ for education places and that it consumed a significant amount of energy. They expressed the view that they were significantly burdened by this task and did not feel sufficiently supported in this. Applications by schools for resources are typically required in March for the following school year. It may be difficult to access appropriate clinical or educational assessments in time for these deadlines and consequently children were frequently left without any resources in the following school year.

School admission procedures:

The admission procedure for schools was not transparent to participants. Some reported a sense of reluctance to accept more challenging children into ASD classes. Others perceived a lack of awareness of ASD among education professionals in the mainstream setting which was also associated with a perceived reluctance to accept a child with ASD.

Preschool education:

Currently ASD specific preschool education is provided either through specialist ASD preschool placement or privately through the Home Tuition grant. Specialist preschool places were reported to be rare and difficult to access. There are 13 preschools listed on the NCSE website between Tallaght and Bray, providing around 78 preschool places annually. These were often geographically distributed and consequently transport was an issue in some cases. Participants reported that transport was offered to very young children by taxi with an escort. Many expressed the view that this was not appropriate for very young children. In some cases participants reported that their children accessed mainstream preschool places but these were difficult for the child with ASD to manage and led to increased behavioural difficulties.

Since preschool provision is far less than the demand, many have to avail of Home Tuition. The Home Tuition grant provides funding for a teacher to work at home with the child or alternatively may be used to fund a pre-school placement in a private specialist ASD preschool. Participants reported that they found it difficult to access information regarding Home Tuition. There was some frustration regarding when the Home Tuition grant is made available. This is funded through the Dept. of Education and an application can first be made on behalf of a child with ASD at the end of the school year in which the child is aged 2.5 years. If a child is diagnosed at an earlier age there is no provision. Given the requirement for the application at the end of the school year, many children are likely to be significantly older than 2.5 years when the application is made.  The burden of identifying a suitable Home Tutor falls on the parent. Participants felt that they were ill-equipped for this task in assessing individual suitability. Moreover if a preschool placement becomes available to the child at any point the placement must be accepted regardless of the geographical location.

Primary and secondary education:

Currently primary and secondary school education may be accessed either through mainstream school with educational supports, an ASD class in a mainstream school or in a special school. School choice was a concern of many participants. Very few schools locally had ASD units and participants reported that they had limited choice in relation to school placement. School choice was perceived as highly stressful, as participants did not feel adequately supported in making the right decision regarding school placement. Participants thought that school facilities did not always cater for the needs of the child with ASD adequately. Additionally the admissions policy to special schools or classes was frequently unclear.

The geographical spread of schools providing ASD classes was also reported by participants to be problematic and not reflective of where children and young people required the school placement to be provided. Some observed that schools with a DEIS designation were more likely to establish ASD units. This was welcomed by participants but they highlighted that again many children had to travel significant distances to school. This placed an additional burden on the parent when transport was not provided. The participants expressed a desire for more school provision in the community where the child or young person resides.

Participants raised questions about the evidence base for the teaching models used in the education system. The Dept. of Education reports that it uses an ‘eclectic’ model. Some participants were of the view that the eclectic model has no evidence base and wondered about the benefit of this model in comparison with more widely researched models such as models based on the principles of Applied Behavioural Analysis.

Participants thought that education professionals required more ASD specific training, as special needs teacher training may be limited prior to taking up a position as a teacher in an ASD class within a mainstream school. Some thought that the teacher’s understanding of ASD had a direct impact on the child’s behaviour and ability to succeed in school. Simple classroom solutions tailored to the needs of the child with ASD were perceived as easy to introduce but not always available.

The specific needs of children and young people with ASD who do not have an intellectual disability were highlighted. It is not always appropriate for children with this profile to attend a specialist ASD class and education within a mainstream setting with the opportunity to mix with typically developing children. In mainstream education additional supports may be accessed through additional hours of resource teaching and care needs may be supported through the provision of a Special Needs Assistant (SNA). Not all children with ASD in the mainstream setting have access to the support of an SNA. The child must be considered a ‘flight risk’, ‘danger to self or others’ or to have significant care needs, e.g. toileting or dressing. Participants thought that resource teaching might not always be tailored for children with ASD. Some participants reported that they paid privately for Social Skills therapies as these were not available to them in the school setting. Mainstream education has a greater focus on academic progress whereas many children with ASD need support in relation to adaptive skills such as self-care and independence.

Importantly several participants reported very good experiences in school placements. They commented on the quality of the environment and the positive impact on their family members with ASD.

Specific issues with secondary school placements:

The model of secondary education may be problematic for adolescents with ASD. Participants said that there is greater pressure in secondary education with regard to integration of the person with ASD in the mainstream classes. This was identified as a critical stressor for adolescents that significantly contributed to early school leaving among this group. Additionally mental health difficulties were identified as a significant issue for adolescents that also contributed to opting out of education early.

The needs of girls with ASD were also highlighted as becoming more prevalent in secondary school. Girls with ASD are frequently under recognised and it is often at secondary school when social difficulties become more apparent. The transition to secondary school frequently required reassessment of the clinical and educational needs of the young person with ASD. Updated clinical and educational psychological assessments are required prior to acceptance to secondary school. Participants reported that they were under pressure to self-finance these assessments to ensure that their young person with ASD could access a secondary school placement.

July provision:

The July provision is a scheme funded by the Department of Education and Skills (DES) to extend the school year for children with intellectual disability or children with ASD. The provision may be school based, i.e. provided within the school environment where the child attends the regular educational placement. Where this is not available a parent may apply for 40 hours of home based provision. The DES information notes indicate that July provision will be awarded simultaneously to siblings where they are accessing regular education in a mixed age and ability environment, e.g. an ASD special class. Where children have differentiated needs a case can be made for separate allocation of the provision.

There was limited experience of applying for July provision among the workshop participants. One participant applied for her two children with ASD and was granted joint provision. This participant successfully appealed the decision on the basis that the two children had significantly different needs. Many participants (almost 50% of one group) were unaware of this provision until it was discussed in the group. Frustration was expressed regarding lack of clear information regarding this. Very little notice is provided to the applicant when the award is made. This in turn makes it difficult to appoint a tutor within a short timeframe. The application for the provision must be made annually which is an added burden.

School transitions:

School transitions occur at least three times in a child’s life; into primary school, transitioning to secondary school and out of secondary school into further education or training. These transitions are immensely challenging for children with ASD and frequently may lead to escalations in problem behaviours, increased anxiety and school refusal. Preparations for transitions were not universally in place in the experience of participants. Several reported their child had access to one hour of preparation for commencing primary school. This is the usual provision for typically developing children but unlikely to meet the needs of children with ASD. Participants thought this was insufficient for children with ASD who frequently struggle with transitions, change and new environments.

Communication between clinical and education services:

Poor communication between health and education services was reported. Recommendations in health reports regarding educational supports were not always implemented. Participants stated that they had to act as a go-between and felt that as a consequence the child‘s needs were not met.

Transitioning to adult services:

Concerns were also raised regarding future ability to access adult services. Particular concerns were voiced regarding the types and suitability of services and geographical location. Given the experiences in accessing assessment for younger children participants were concerned whether additional assessments will be required to access adult services and how these would be accessed.

Social welfare provisions:

Several allowances are available to parents of children with disabilities either through taxation or payments through the Dept. of Social Protection. These include the Incapacitated Child Tax Credit, Domiciliary Care Allowance (DCA), Disability Allowance (DA) and Carer’s Allowance Several workshop participants reported experiences with applying for the Domiciliary Care Allowance (DCA). They were not informed about this allowance by professionals and were more likely to have learned about them from other parents. Participants also reported some frustration that the payment is not backdated, particularly where the individual had not applied due to lack of awareness.

The application form for the DCA is lengthy and takes time to complete. The applicant must gather a range of supporting documentation from specialists involved in the child’s diagnosis and treatment. The form must then be signed by a GP or other specialist. The application procedure requires a good level of literacy and therefore applicants with low literacy or English as a second language are likely to struggle to complete the application. Participants reported that the process is too difficult and burdensome. It is common for the application to be refused on first submission requiring a further lengthy appeals procedure. Success in the application was perceived to be more related to the ability to complete the

form than the need of the individual. Furthermore the experience was described by some as traumatic and reported that it was ‘cruel’ to have to fill out a lengthy document regarding their child‘s deficits.

Impact:

The impact of ASD on families emerged as a very significant theme during the workshop small group discussions. Areas of greatest impact included the ability of parents to participate in the workplace, financial burden, time and energy required to access health and education services, extreme stress relating to complex needs and behaviours that challenge, impact on broader family members, health and safety concerns and emotional impact.

Many participants reported that they had reduced or ceased work commitments in order to care for their children with ASD. A number had taken Carer’s leave to facilitate this while others had stopped working completely. Many participants expressed the view that it would not have been feasible to continue working while also trying to access services for their child. One participant reported for example, that she had spent four months compiling the necessary information to apply for the Domiciliary Care Allowance. Reduction in working time was associated with loss of income and economic disadvantage. Participants had previously indicated that the majority had paid for diagnostic assessments and therapeutic interventions; therefore the financial impact in the context of reduced income for families appears of even greater significance. Even more significantly, some participants reported that they had borrowed money from family members to pay for therapies for their child.

The discussions also served to illustrate the significant time and energy required by participants to access services and the associated burden this placed on them and their families. Participants spoke about how it was necessary to devote all their energy to seeking out private diagnostic assessments and therapies, making applications for various allowances and provisions and bringing their children to many appointments with professionals. The need for some to transport children long distances to school was also a demand on time. Many reported that there was little time available to devote to the needs of other family members, especially their other children. It was notable that several grandparents attended the workshop on behalf of their children and grandchildren with ASD. They spoke about their concerns regarding the pressures on their children. They also spoke about their own ability to contribute to the care needs of their grandchildren with ASD frequently in the context of ageing and their own health needs.

Very significantly some participants discussed how behavioural difficulties, particularly aggression was a cause for concern. This was reported to be directed frequently towards other children in the family. On an emotional level it was clear that many workshop participants had been impacted negatively by their experiences of accessing services. A high degree of acceptance regarding the needs of their family members with ASD was expressed. However in contrast participants reported feeling depleted by the process of accessing diagnosis and health and educational interventions.  Participants reported feeling isolated and unaware that others were also having the same experiences and frustrations in accessing services. They reported feeling overwhelmed, exhausted and unable to advocate on behalf of their child with ASD. Some also stated that they thought that there was a lack of respect from professionals and others felt blamed for their child’s condition.

Selected qualitative statements:

Several of the participants’ statements illustrated some of the significant themes highlighted during the workshop.

ASD recognition:

“I had concerns for my child from aged 3 but I was repeatedly dismissed by professionals, GP, teachers etc. until my child was finally diagnosed at 10 (years). They lost out on 7 years of help, support and intervention because I was considered to not know enough.”

Professional attitudes towards diagnosis:

“Would your child not be embarrassed to have this label?” “Do they really need the diagnosis?”

The Diagnostic Odyssey:

“My child received a diagnosis from Lucena at 2½, but the diagnosis was not recognized by clinical services so we had to go through AoN process and then wait for an ASD assessment before an ASD diagnosis was made at 5years. We waited for referral for services for 9 months but then my child turned 6 (years) and was discharged from the service. She had to be re-assessed for services again before she finally received intervention just before the she turned 7 (years).”

“The public health nurse noticed something was amiss at 17months but my child still only received the diagnosis at 3½ years, almost 2 years later.”

“My child had assessments with the OT and psychologist a year ago and I am still awaiting a diagnosis. The only communication I have received is a letter saying that a report is in the process of being written.”

Limited clinical services:

“My child has had 1 OT appointment in 16months” “My child has had 12 hours of SLT/OT in 2 years”

‘Services are disjointed’

Struggle to get school placement:

“In order to get my child into an appropriate ASD school, I applied 9 times to the same school before a place was provided”

“Just because ASD is not life threatening, doesn’t mean it should be taken less seriously than

other conditions”

Impact on families:

“If you’re not willing to fight and shout loudly, your child will suffer, it shouldn’t be like that” “A constant uphill struggle”

“The process is damaging to the mental health of parents and families.”

“They are asking us what our children need; they are the professionals, we are the parents. There is always this feeling of responsibility being put back on us”.

Action points highlighted by participants:

In the large group discussion the participants suggested improvements to services that would help to address some of the issues highlighted.

Action points regarding the provision of health services:

  1. 1. Provide good information on assessments, the terminology used by professionals

and the various roles of professionals within clinical services. They suggested making leaflets available at preschools, GP surgeries, through the public health nurse and at HSE clinics.

 

  1. 2. Appoint an Assessment Officer in Dublin South West urgently.

 

  1. 3. Appoint a Liaison officer in Dublin South West urgently. This post would serve as a point of contact following diagnosis, provide support to families and guide them through the process of seeking intervention.

 

  1. 4. The AoN process should be reviewed and revised to enable a more seamless pathw

 

  1. 5. The Disability legislation needs to be reformed to include an obligation to provide clinical services that are recommended as part of the AoN process.

 

  1. 6. There should be improved links between clinical and educational services. Action point regarding education services:
  2. 1. Improve teacher training, with specific focus on recognising signs of ASD, assisting in communicating concerns to parents, liaising with clinical services and managing challenging behaviours within the classroom.

 

  1. 2. Forward planning in terms of transitioning through education system e. when a child has ASD in primary school, a place should be automatically made available in secondary school.

 

  1. 3. Reform process for application for July provision so that parents do not need to make a new application each

 

  1. 4. Forms should be revised – service statement / report from clinical services should be sufficient.

 

  1. 5. Improve communications between clinical, education and social welfare services to reduce burden on parents.

 

Summary and recommendations:

The workshop in Dublin South West was convened to give a qualitative overview of the experiences of parents of children with ASD in accessing health, education and other supports. Thirty five individuals attended the workshop which followed a town hall format. There were key points for discussion and the themes emerged through discussions conducted across four groups. It was notable that the experiences reported in the small group discussions were highly similar across the groups. Many of the issues that were highlighted seemed to reflect universal experience. The main themes were those of communication, resourcing, access, process, professional training, supports and burden and the negative impacts on the child and family.

Communication was reported to be generally poor across all areas. Participants in the workshop had clearly struggled to find out information regarding clinical and education services. They relied more on information shared through advocacy groups and social media than on official communication from the HSE or Department of Education and Skills. This impacted on their ability to access services or to know about the pathways. Pathways through assessment, diagnosis and education seemed confusing to participants. There were many uncertainties and a sense of not progressing through diagnostic or intervention services. Many spoke about feeling at a loss or abandoned. Additionally poor

communication between professionals resulted in unnecessary replication of assessments and further delays in accessing appropriate services.

 

Critical resourcing issues were highlighted in relation to all areas of service provision. The vacant Assessment Officer and Liaison Officer posts in Dublin South West are significant gaps. These posts represent key personnel tasked with facilitating the AoN process and implementing recommendations. In the absence of these posts children will not access diagnosis of ASD and will not receive intervention. There appear to be critical gaps also in the HSE multidisciplinary teams both for EI and school age. Without these professionals both assessment and diagnosis cannot be implemented. As a consequence the HSE is funding private assessments in the area to meet the requirements of the Disability Legislation, but there are concerns regarding both the process and the professional standards with private assessments.

Access to services was severely limited. This was particularly marked following completion of the AoN process when a diagnosis was established. Many participants reported that they were unable to access any clinical supports for their children. Waiting times for intervention services were excessively long leading to missed opportunities at a time when it is most critical to the child’s development. Many participants had experienced waiting lists of years following diagnosis. In relation to education, preschool places in particular are at a premium and there is a reliance on Home Tuition to provide early school years education. The provision of Home Tuition is welcome but only accessible to children aged at least 2.5 years. School places are also difficult to access and frequently located far from the child’s home. There are less secondary school places available than primary school and clearly more will be needed with the growing population of children diagnosed with ASD.

Process was a very significant theme that was highlighted. Deficits in these areas were associated with significant deviations from best practice and professional standards. This was most obvious in relation to private outsourcing of AoN assessments. Best practice advocates that the diagnosis of ASD should be multidisciplinary and provide a comprehensive assessment of the child’s needs. The assessments provided in Dublin South West were conducted by different professionals who did not communicate with each other. This fragmentation of the process seemed to be associated with long delays in reaching diagnostic conclusions for participants. There appears to be little consultation between professionals to support a multi-disciplinary evaluation of the child’s needs. Poor standards of professionalism were even more concerning. Reports were not communicated in person with parents. They were not written in language that was considered understandable and were not shared with the child’s general practitioner. They were sent to parents in the post and most gravely, occasionally with incorrect personal details. Other issues with process were also reported that impacted negatively on participants, particularly where participants were required to make applications for support or resources. This included applications for social welfare and education supports which were perceived to be unnecessarily burdensome. This was particularly notable in relation to the DCA where participants almost expected to be refused on the first application and have to pursue a lengthy appeals process.

Professionals engaged in diagnosis and intervention and provision of education supports require professional competency in ASD. Additionally while screening for ASD is not currently recommended in the NICE guidelines, GPs and public health nurses need to be aware of early red flags for ASD. There was concern expressed by participants in relation to these competencies. Some early red flags were missed and reassurances given that were likely to have been premature. The interactions with professionals that participants reported appeared to reflect competency deficits that were possibly associated with reluctance on the part of professionals to make a diagnosis. Participants reported they had been told by the school age team that they were unable to support children with behaviours that challenge, which may relate to training or resource deficits. Some concerns were also raised regarding the training of teaching staff in the area of special needs. Some participants thought that exposure to this during teacher training is not adequate and that further training should be provided to teachers undertaking a role in an ASD special class.

It was very clear that participants in the workshop were feeling significantly under supported. This theme arose across health service provision and began for many after the first appointment for AoN was offered. They reported feeling lost and abandoned, confused, worried and distressed. They missed having a guiding hand to help them through the process of diagnosis and into intervention and to negotiate the school system. They felt that the responsibility for their child’s needs was placed back on them and that there was no good oversight of their child’s clinical needs. The participants used a language of combat in relation to services, e.g. ‘fighting for services’ or ‘battling to get supports’. It seemed almost impossible to get access to available supports such as resources for education or social welfare supports.

Carer burden was strongly associated with a sense of being under supported. Confusion, worry, anxiety, mental health problems, feelings of isolation and abandonment were commonly reported. Very significant negative impacts were reported including loss of income, financial pressures and inability to meet other personal and family responsibilities. Very significantly almost all of the participants in the workshop had paid for diagnostic assessments or therapies out of their own pockets.

Most notably the workshop highlighted very significant deviations from international best practice. The NICE guideline [CG128] lays out very clear guidelines for the structure of diagnostic services, pathways for diagnosis and the timeframe to initiate and complete diagnostic assessments. Clear recommendations and strategy for ASD are sadly lacking in Ireland and policies for service developments have been based more on trying to share scarce resources across areas of high needs. With no standards of practice to strive towards, improvements in services will not occur. Bad practices may continue and even increase, to the ultimate detriment of children and families.

Based on the experiences of the participants in this workshop a number of immediate and intermediate solutions could be put in place. It should be born in mind that there is no autism strategy nationally and very little policy in place to guide the development of services. Therefore solutions here should be seen as responsive to the acute needs. There is a longer term need for national policies to guide the development and implementation of services.  Immediate solutions should focus on the very significant acute deficits in service provision that have been reported and these include:

 

  1. 1. The Assessment Officer and Liaison Officer posts should be filled immediately to meet the minimum requirements of the Disability Legislation. These individuals can provide critical information to parents going through the AoN process and help alleviate some of the burden on parents with the proc

 

  1. 2. Resources are required for the clinical teams loca The teams need to be adequately staffed so that they may develop pathways of care within the HSE for individuals with ASD. This will reduce the reliance on fragmented private service providers and should provide better continuity of care. Adequate resourcing will also improve access to services and ensure that waiting times for diagnosis and intervention are reduced. Moreover this is required to ensure that parents cease paying out of pocket for assessments and interventions that the HSE can provide.

 

  1. 3. Education and training resources are urgently required for parent Basic education about autism and the processes involved in assessment and diagnosis are required. Parent training programs have also been shown to provide therapeutic benefits to children with ASD. Excellent training is available through the Middletown Centre for Autism in Northern Ireland. This or a similar agency could be resourced to provide more frequent training.

 

  1. 4. Pathways and processes for assessment and intervention are required to ensure equity of access and treatment within the health A regional autism strategy group, as recommended by NICE could take on the task of mapping services, developing policies and pathways and ensuring co-ordinated and integrated service provision. The HSE teams providing services need to have systems of case management to ensure that there is a consistent point of contact for the individual with ASD. This will drive better communication with parents and other agencies and reduce the duplication of processes that appear to be endemic currently.

 

  1. 5. Education and training for professionals are required. Professionals engaged in ASD assessment and treatment should have experience working with children both typically developing and with ASD and should be capable of differentiating ASD from a range of other developmental, mental health and behavioural condition A training officer could be appointed to map training needs, source and coordinate training. Additionally a specific training budget needs to be in place for staff in all agencies engaged in ASD service provision to facilitate further training and development. A program of ASD awareness would serve to increase recognition of

ASD among professionals working with young children and aid referral for diagnostic assessment.

 

  1. 6. Extending the numbers of pre-school and school places that are available locally to children is important to ensure that education is accessible close to home. Critically this needs to also be aligned with access to clinical support Places at secondary school are needed more urgently as the numbers of places available is outstripped by demand. Again teacher training specific to ASD needs to support these developments. Consultation with the National Council for Special Education (NCSE) would be useful to explore teacher training requirements.

 

 

 

  1. 7. Many parents reported significant difficulties in completing applications for service provision and social welfare support Support with this process should be provided by health and education professionals and key individuals should be identified to take on this role, e.g. the Assessment Officer, The Special Education Needs Organiser or a clinical key worker.

 

In addition to the immediate solutions presented here it is clear that a national policy is required to ensure that there is a co-ordinated and homogenous strategy for the development of service provision across Ireland. Traditionally in Ireland service provision varied according to where the individual was living. Services have developed in a poorly coordinated way and the quality of provision is variable. A national policy for autism service provision would serve to align current practices with international best practice and inform the development of equitable services to support children and families impacted by ASD. Further exercises in mapping services and consultation with service providers would be useful also to inform the development of a policy. An ASD strategy committee appointed nationally would serve to identify the range of needs and services required by the individual with ASD and how to best arrange services to ensure these needs are met.

 

Information contained in report correct at time of June 2016.