St Catherine’s Association was formed in Co. Wicklow in 1970 by parents of children with intellectual disability in response to underdeveloped services for such children in the county at that time. From very humble beginnings involving simply providing a drop.in service so that parents could do many of the tasks of day-to-day living, it has grown to providing services for 250 children up to the age of eighteen and their families. Ian Grey, principal psychologist of St Catherine’s Services, details the results of a recent survey on the service today.
Owing to its origins based on parental needs for their children, St Catherine’s Association continues to keep identified parental need as one of its core guiding influences on service development. In recent years, perhaps in part because of better diagnostic practices, the identified rate of autism has increased substantially within Wicklow—as it has in many other parts of the Republic. In turn, this required St Catherine’s to develop services for children with autism in line with expressed parental need and evidence-based practices. Traditionally, St Catherine’s was charged with providing services to children up to the age of eighteen with moderate (or lower) intellectual disability. The service has expanded in recent years to include approximately 100 children with a diagnosis of autism or autistic spectrum disorder, with the majority having a co-morbid intellectual disability.
At the Centre for Early Intervention in St Catherine’s Association, a highly skilled diagnostic team is available which provides interdisciplinary assessment involving clinical psychology, speech and language therapy and occupational therapy. The team uses an assessment framework in line with best practice guidelines and uses gold standard assessment methodology such as the Autism Diagnostic Observation Schedule (ADOS). A single diagnostic report is prepared with agreed priorities for intervention for parents. Parents whose children receive a diagnosis of autism (or who are strongly suspected of being affected by autism through external reports or the use of reliable screeners until thorough assessment is completed) are eligible for accessing intervention services. The Centre for Early Intervention has sanction for pre-school and school-age classes and these are currently based in a number of locations throughout Wicklow, including Bray and Arklow, to enable ease of access for children and their parents. The core model of intervention in these classes is Early Intensive Behavioural Intervention, which to.date remains the model of early intervention associated with the best evidence-based outcomes for young children with autism. The pre-school and school classes associated with the Centre were the subject of a whole.school report by the Department of Education and Science in 2010, which provided a highly positive review of the school and the quality of teaching and learning. The report also stated that the evidence of breadth and flexibility in the use of ABA within the school was commendable.
Challenges for parents
There appears to be at least three separate challenges that parents currently experience if they have a child with autism in County Wicklow: referral and timely access to appropriate diagnosis and intervention, support for children in mainstream schools, and lack of structures to enable entry into mainstream schools. As in many other parts of the healthcare system in Ireland, the difficulty for parents appears to be one of getting ‘into the system’ in terms of accessing appropriate diagnostic and intervention services for their child. Over the years at the Centre for Early Intervention, parents have anecdotally reported experiencing substantial delays in accessing appropriate services, with concomitant effects on stress affecting both themselves and their families. Although St Catherine’s Association has always accepted and continues to accept parental referrals, recent changes to referral processes in the county are not likely to improve the situation for parents.
Recent HSE changes have resulted in parents having to deal with at least two systems prior to securing a place in St Catherine’s. Parents will almost always initially raise their concerns over a child with their primary care teams, GPs or public health nurses. In the past such professionals could refer children directly to St Catherine’s Association, but now they must refer children showing developmental delay to the HSE Early Intervention Team and parents then enter a second system. Owing to the very heavy caseload of this team, its wide remit and staffing issues related to the current embargo on recruitment/replacement of staff, this inevitably slows down effective identification of children who potentially have autism. In those cases where children do score positive on certain screening instruments, they are then referred to St Catherine’s for full assessment by the diagnostic team. Unfortunately delays of up to six months or longer can take place in some instances. There are close links between the HSE Early Intervention team for Wicklow and St Catherine’s (the team now being the main referral source to St Catherine’s for children suspected of having an Autistic Spectrum Disorder). In addition, St Catherine’s and the team work closely together to speed up referrals as much as possible.
The second challenge for parents, and one that may be replicated in other parts of the country, is the absence of a system that allows children with autism to move from a high-support intensity environment to a low-support environment. The goal of Early Intensive Behavioural Intervention, supplemented by multi-disciplinary support in the Centre for Early Intervention, is for children to acquire the personal and academic skills needed to function and continue to learn in a less structured environment. In other words the simple goal is get children ‘back on track’ so they can attend mainstream schools. However, a difficulty that has arisen is the relative absence of feeder schools in Wicklow for children with autism. The majority of mainstream national schools have a cap of two classes with special designation for children with autism and these typically fill quickly. Such classes may be appropriate for children following EIBI and would allow opportunities for social inclusion through less structured interventions. However, with these classes capped and almost always full, the opportunities for children to move on are seriously impaired.
The third challenge for parents is for those children who ‘fall between the cracks’. Services for children with autism in Wicklow suffer from many of the structural problems evident in other areas. All services have selection criteria and children with autism who fail to meet the criteria for any service may end up with none. By way of illustration, children with moderate intellectual disability and autism in special units attached to mainstream schools are automatically not covered by some services, owing to the co-morbid moderate level of intellectual disability. The National Educational Psychology Service (NEPS), which is charged with meeting the needs of these units, is frequently unable to do so owing to structural problems in the system. Although St Catherine’s provides services to children with moderate intellectual disability, it traditionally has only done so with respect to those children who attend schools or classes belonging to St Catherine’s Association. There are a growing number of children who are in this category and in response St Catherine’s Association and the HSE Early Intervention Team hope to establish an Outreach Team with joint staffing to meet the needs of these children.
Parental needs and satisfaction with early intervention
Critical to service development for children with a diagnosis of an autism spectrum disorder is determining parents’ views on services they currently receive and also what they identify their needs to be. As mentioned earlier, St Catherine’s Association has always striven to be responsive to parental needs and it has recently undertaken a parental survey to determine the degree of parental satisfaction with its Centre for Early Intervention, and also to determine current parental needs in respect of the service. Using the European Parent Satisfaction Scale about Early Intervention, a total of 49 parents rated six dimensions of the service: Assistance/Care for Parents, Assistance/Care for Children, Social Environment, Relationship between Parents and Service Providers/Professionals, Model of Care/Assistance, and Parents’ Rights. Examples of items from these scales and parental scores are given in Table 1. The results suggest that overall parents report high levels of satisfaction across these dimensions, with the highest levels of satisfaction given by parents being the relationship between parents and staff, and the assistance/care given to children, followed by the model of care/assistance in the Centre for Early Intervention.
Parental Satisfaction with Early Intervention
|EPSSEI Scales||Max. Score||Mean Score|
|Assistance to parents||75||56|
|Assistance to children||60||52|
|Model of Care/Assistance||75||64|
|Relationship with Staff||30||27|
Parents’ needs were assessed across six domains: Needs for Information, Needs for Support, Explaining to Others, Community Services, Financial Needs and Family Functioning. Needs for Information and Needs for Support were the broad areas where parents expressed the greatest need (see Table 2). Percentages given relate to the number of parents who reported definitely needing help in relation to the content of that individual item.
These results shine a light on the needs of parents attending the Centre for Early Intervention. Information clearly constitutes the greatest need, particularly around services that might be available in the future. As service providers, we may often forget that parents always have a longterm view and the high numbers requiring help with this suggests that we have to begin informing parents from the outset of the options they may have in the future. This, however, is crucially dependent on how their child responds to early intervention, so it is not always possible to be as predictive as parents might wish. Nonetheless, even this should be communicated and as much information as possible given.
St Catherine’s Association continues to strive to provide high quality assessment and intervention practices for the children of County Wicklow. Parents do experience delays in accessing the service, in part due to structural issues within the county, and it is hoped that these can be resolved because it places parents under unnecessary strain. In respect of future service development, the next challenge is to take account what parents themselves need from the Centre for Early Intervention and incorporate them into the service in the best way to meet their needs. Despite these needs, the survey results did reveal high levels of satisfaction with the service, particularly in the domains of relationships with staff, the assistance and care provided to children and, perhaps most importantly, with the model of intervention/care itself- With these three key critical factors in place, the foundation exists to meet the needs of the children and their families.
Parents’ Needs around Early Intervention
|Needs for Information||%|
|I need more information about my child’s condition or disability||36%|
|I need more information about how to handle my child’s behaviour||47%|
|I need more information about how to teach my child||63%|
|I need more information about the services that my child might receive in the future||80%|
|I need more information about how children with disabilities grow and develop||73%|
|Needs for Support|
|I need more opportunities to meet and talk with parents of children with autism||48%|
|I need to have more time just to talk with my child’s teacher or therapist||35%|
|I need reading material about other people who have a child similar to mine||38%|
|I need to have time for myself||51%|
|Explaining to Others|
|I need more help in how to explain my child’s condition to his/her siblings||22%|
|I need help locating a doctor who understands me and my child’s needs||22%|
|I need help locating baby.sitters who are willing and able to care for my child||20%|
|I need more help in paying for expenses such as food, housing, medical care, clothing||28%|
|Our family needs help in discussing problems and reaching solutions||24%|