INFORMATION IS THE KEY TO EMPOWERMENT: The case for pupils 0-18 years diagnosed with an intellectual disability and/or Autism Spectrum Disorder(s) navigating the Irish education system

Dr. Sheelah Flatman Watson, Department of Geography, National University of Ireland explains the pathways to support for families after a diagnosis of ID or ASD

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Families/guardians of people receiving a diagnosis of intellectual disability (ID) and/or autism spectrum disorder(s) (ASDs) may experience a sense of disempowerment when faced with the prospect of sourcing appropriate educational pathways because they have little or no prior knowledge and/or experience of facilitating special education needs. Some information may have been absorbed through exposure to media coverage, or supporting charity fund-raisers. There may be some awareness of inclusion of people with special needs in local schools or as employees in local workplaces. However, knowledge and awareness of the day-to-day progression from diagnosis to achievement of full potential and quality life experiences for people with ID/ASDs are typically new learning through uncharted waters. Achieving a holistic view and an in-depth knowledge of the educational pathways and the appropriate and beneficial resources available to assist positive progress in an evolving system can be both daunting and challenging.

Over the last ten years plus, evidence-based reports have been produced which have led to new policy developments and the publication of guidelines toward best-practice models. New structures and organisations have been established and a significant amount of information is now available for people with ID/ASDs, families/guardians and professionals working in the field. This article will map potentially empowering pathways to support positive outcomes in accessing placements, supports and progressive educational planning.

Access to early intervention

Streamlined pathways to services are evolving, albeit gradually, following the commencement of the Assessment of Needs (AoN) in June 2007 (for individuals born post 1 June 2002 (Government of Ireland 2007). On completion of the assessment, an assigned HSE Case Manager (Liaison Officer) is responsible for providing a service statement. ‘The Service Statement will say what services and supports will be provided to your child and will be prepared within 1 month of the assessment being completed’ (HSE 2013). It should also state where and when these services will be provided (Government of Ireland 2007). It is noted in the Act that the service statement will not outline education services for a child (Government of Ireland 2007a (6)), although communication between the Liaison Officer and the National Council for Special Education (NCSE) is provided for. Further, the emergent restructuring of children’s disability services, outlined in ‘Progressing Disability Services for Children and Young People’ (HSE 2013a) aims to further enhance and streamline pathways to accessible health services for all people with ID/ASD, and it is noted that ‘The programme also involves our partners in the education sector to ensure we [HSE] are working together to achieve the best possible outcomes for children’ (ibid).

Historically, the HSE has taken responsibility for the healthcare and early intervention education provision for children aged 1-6 diagnosed with an ID/ASD, through a network of service providers. Many of these are voluntary services supported by the HSE. Access to an early intervention programme was/is typically dependent on availability. Currently, provision of early intervention programmes for pupils with an ID remains with the HSE/voluntary system (DES 2013) and is overseen by an Early Years Support Team (for example, see Muiríosa Foundation 2009). The Department of Education and Skills (DES) is now also engaged in the provision of early intervention education for pupils with ASDs through an expanding system of ASD early intervention classes within mainstream settings (NCSE 2013). Further, some pupils with ASDs from age 3-4 are catered for in Applied Behavioural Analysis (ABA) schools (SPEAC 2013, Jonix 2013).

Alternatively, some families choose to enrol their child in a local mainstream pre-school. This may be supported by the child’s service provider, particularly where the service statement includes an early intervention programme, but no programme has been offered or is available. Further, pupils with ID/ASDs may apply for their free pre-school year on a pro-rata basis, i.e. 2 days per week in the first year and 3 days in the second year, or to delay commencement according to the child’s needs, granted on a cas-by-case basis (ECCE 2013).

Many early intervention educational facilities receive more applications than the spaces available and refusal/deferral of enrolment is not uncommon, even when an early intervention programme is listed in the child’s service statement. In this instance, the family may apply for inclusion in the Home Tuition Scheme which states that ‘..-children with autism of a pre-school age may avail of the scheme’ (DES, n.d.). Families have the option to lodge a complaint under the AoN process if they are not satisfied with the outcome(s) (Government of Ireland 2007).

Access to primary and post-primary schools

The commencement of the Education Act (1998) (Government of Ireland 1998) provides a legislative framework ‘to promote equality of access to and participation in education and to promote the means whereby students may benefit from education’ (ibid, Pt1S6(c)) and, further, ‘to promote the right of parents to send their children to a school of the parents’ choice having regard to the rights of patrons and the effective and efficient use of resources’ (ibid, (e)). In 2011, the NCSE published Children with Special Educational Needs: Information Booklet for Parents, to support families in understanding their child’s special education needs and the supports available (NCSE 2011). That said, choosing a placement for a child with ID/ASDs is not necessarily straightforward. The NCSE also published a booklet Choosing a School (NCSE 2013a) to support families in the decision making process.

Applications for enrolment are typically made in the school year preceding the proposed entry date. For new pupils with special needs, school personnel must submit their application for resources six months in advance of entry. Therefore, enrolment forms and the schools’ enrolment/admissions policy (Government of Ireland 1998, PtII S9 (m)) should be sought about nine months in advance. The schools’ Inclusion Policy and their Code of Conduct/behaviour may also be available and both are worth reading. Schools may have signed up for participation in the ‘Inclusive Education Framework’ process and may display the relevant certificate (NCSE 2011a, p.12). Enrolment can be relatively straightforward in schools where personnel are welcoming and oversee a smooth entry for all children equally.

However, research has shown that pathways to enrolment are less smooth for many. 32% of principals in primary schools admitted to non-enrolments, with figures of up to 43% in some locations (Flatman Watson 2009, p185). Further, 54% of families reported negative experiences (ibid, p196). Access was denied, delayed and/or advice given to go elsewhere to access better facilities or more highly trained personnel. Principals claimed not to have the resources to cater for the particular applicant’s needs. However, once there is space available in a school and the applicant meets the terms outlined in the 1998 Education Act and the criteria outlined in the school’s policy documents, enrolment may not be refused. Practices such as enrolment being subject to approval by the Board of Management (BoM) and/or with time limitations imposed, such as attendance for shorter hours than fellow pupils, are not uncommon. Such practices are not in keeping with legislation. The Equal Status Act (2000) provides for the equal treatment of all persons and legislates against discrimination, inter alia, on the basis of disability (Government of Ireland 2000, Pt II S7 (2) (a-d)). That said, this provision is tempered for pupils with ID/ASDs where, ‘by virtue of the disability, make impossible, or have a seriously detrimental effect on, the provision by an educational establishment of its services to other students’ (ibid, Pt. II S7 (4) (b)).

When equal access to school enrolment is not forthcoming, it is advisable to request (insist if necessary) on receiving written confirmation of the refusal/deferral of enrolment or shorter hours, signed by the principal or a member of the BoM. Documenting these occurrences and/or discriminatory practices, particularly if they are persistent, may empower families to secure the support of the local Special Education Needs Organiser (SENO) (NCSE 2013b) and/or an Education Officer (NEWB, n.d.) to address the issue(s) and to source an appropriate placement or to support families in an appeal under section 29 of the 1998 Education Act (DES n.d.).

Progressive planning within and between placements

Supports as outlined in the pupil’s AoN and/or psychological reports should be in place on school entry, following timely enrolments. These may include access to learning support from the school’s general allocation for pupils with ‘mild’ challenges (high incidence) and/or support from a special needs assistant (SNA), for pupils with special care needs. Pupils with higher educational support needs, typically those with multiple diagnoses, on the moderate/severe/profound end of the continuum of ability and/or those with ASDs (low incidence) will be allocated resource teacher hours from 2.5 to 5 hours per week (DES 2005, p16; DES 2012).

An Individual Education Plan (IEP) may be set up for each pupil with ID/ASDs, (NCSE 2006), although such provision is not yet mandatory. A holistic approach, based on NCSE guidelines (ibid) and pertinent use of assigned resources should be documented and then monitored regularly. Positive behaviour management, where required, should be put in place to support pupils with behavioural challenges.

Many schools cater well and use the school’s Code of Conduct when incidences occur. However, some parents report that their children with ID/ASDs are singled out for ‘suspension’ when ‘minor’ issues arise. Poor behaviour management can lead to school personnel contacting parents to remove the pupil from school for a period, when an incident occurs. This can be a regular happening for some pupils with ASDs. Again, written explanation should be sought on each ‘suspension’ and it is advisable to keep a record of these occurrences. This may empower families to seek appropriate supports, as above and/or through the Special Education Support Service (SESS n.d.). Positive progress and outcomes are achieved for many pupils and teaching personnel through the many and varied supports now available in the system.

On a final note, transitioning between placements can be challenging for pupils with IS/ASDs (Barnes-Holmes et al. 2013). It is beneficial to build transition planning into a pupil’s IEP (NCSE 2006, chapter 4) well in advance of change.

Conclusion

The development of knowledge and understanding of the evolutionary policies and practices, as discussed above, may provide families/guardians of 0-18 year old pupils diagnosed with an ID/ASDs with a pathway through the Irish education system toward positive outcomes and with a strong sense of empowerment.

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