The report focuses on and explores families’ experiences and recommendations for improved access and support.

A recently published report by the Health and Social Care Alliance Scotland (the ALLIANCE) outlines the findings from a research project commissioned by East Ayrshire Council to understand families’ experiences of accessing out of school (or recreational) additional support needs (ASN) services in the local area. Council representatives contacted the ALLIANCE to carry out this work after families engaged with East Ayrshire Council over the summer of 2022 to voice their concerns that ASN holiday provision, particularly for those with high levels of need, did not meet the requirements of children, young people, and their parents and/or carers.

Through engagement with parents, carers, and ASN support staff, the research aims were:

  • To gather evidence of disabled children’s, young people’s, and their families’ lived experience in terms of accessing out of school ASN services, over the summer holidays as well as during term time.
  • To identify what children and young people with high levels of need, and their families, would like to see change about the out of school support they can access.
  • To inform East Ayrshire Council’s services commissioning plan to support children and young people with high levels of need, and their families.
  • For East Ayrshire Council to work in partnership with children, young people, and families/carers in deciding what are the priorities to improve out of school ASN service provision.

Data collection through one-to-one interviews (telephone or Zoom, depending on participants’ preferences) and focused group discussions (both online and in-person) took place from September to October 2022. The following key findings emerged:

  • Access to information and support: participants said that it is difficult to find information about available out of school ASN support and other entitlements.
  • Suitability of activities: families said that they have often been reluctant to take their children to available activities (including those described as open to children and young people with ASN) as they feel these do not meet their needs. Insufficient amount of staff, large groups of participants, very broad age-ranges, and sensory overload were often quoted as factors that stop families from accessing services.
  • Familiarity of location and staff: all participants (both parents/carers and ASN staff) considered familiarity of location and staff to be two of the most important factors to ensure that ASN activities would meet the needs of their children.
  • Need for one-to-one support: some families said that their children require one-to-one support to be able to attend activities, whether to provide them personal care, administer medication, or for safeguarding reasons.
  • Time of activities: several participants mentioned that a lot of the activities on offer are held at times that are not suitable for parents in full-time employment to take their children, (e.g. mid-mornings on weekdays), or at times that are unsuitable for the children (e.g. film nights during evening hours).
  • Understanding of individual circumstances: there was a sense from participants that there was a lack of understanding for each family’s individual set of circumstances and needs. Many expressed feeling like the Summer Scheme promoted a general, or ‘one size fits all’, vision of ASN.
  • Holistic family support: participants felt that understanding their children’s individual needs would also promote a more holistic approach to providing services, with consideration for the whole family unit’s needs.
  • Different views on inclusion: a point of contention among participants was on the approach to inclusion that the Summer Scheme promoted. To several families, a vision of inclusion which seeks to bring children with ASN into mainstream settings is inadequate. Others, however, were more in favour of an approach to inclusion which sought to make mainstream activities and settings accessible to all children and young people, including those with ASN.
  • Out of school ASN provision is not just about respite or childcare provision: several participants highlighted that out of school ASN provision should not just be viewed as a form of respite for families or a childcare service; rather, they emphasised that it is about children and young people having meaningful experiences, just like children attending mainstream settings.
  • Need for continuity of services across the lifespan and improved transitions: most participants said that access to out of school ASN provision is ‘not just a summer holiday problem’. Consideration should be given to the fact that ASN services and supports need to be made available to children and young people throughout term time and other holidays, as well as across their lifespan.

Based on participants’ accounts and own suggestions for change, the following recommendations are put forward:

  • Establish a clear communication channel with parents (e.g. through Parent Councils) with clear expectations about feedback loops between decision-makers and families.
  • Increase the offering of ASN out of school provision, with higher staff to children ratio, in familiar places and with familiar staff. It should be clear in service descriptions what kind of provision will be made available to users (e.g. personal care, one-to-one support, etc.). The groups should be age appropriate.
    • Provision should be available during term time and other school holidays like Easter, not just the summer.
  • Understand children and young people’s individual needs from the outset (e.g. through a questionnaire), so that staff running activities will know their triggers, medical requirements, etc.
  • Make it easier for families to hire personal assistants, whether through social work or third-party agencies.
  • Offer activities at times that are convenient for working parents to take their children (or make more personal assistants available to take children to activities).
  • Provide training on inclusion and ASN to Local Council representatives, professionals, and other decision-makers involved in shaping ASN out of school provision.
  • Create opportunities for parents who wish to be part of peer support groups to get together.
  • Centralise information about available ASN out of school provision, making it available in accessible formats, and keeping it up to date.
  • Allocate a budget for a designated disability / ASN services hub, with a key point of contact within the Council.
  • Invest in building respite care infrastructure.
  • Invest in building changing facilities in community settings.
  • Provide ASN staff training and invest in staff recruitment.
  • Continue investing in creating fully accessible recreational areas and community spaces.
  • Engage with disabled children and young people, not just parents/carers, to understand their needs and what they would like to see change in the services they access.
  • Develop a stronger transitions to adult services plan in the local area.
  • Adopt the Scottish Approach to Service Design in delivering services (both for children and young people with ASN and those who access mainstream services).The report provides a more detailed background to the project, and the national and local context within which this research was carried out. An explanation of the research design, methodology, and guiding principles is also included, before presenting the key findings in further detail, using participants’ own accounts.

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