Supporting disabled children, young people and their families: guidance

Introduction

In 2016, the Scottish Government funded a survey of families with disabled children and young people across Scotland to gather evidence about their information needs. Families said they would favour a centralised resource which signposts to relevant information and organisations. In response to these wishes, we began to develop draft content for the website.

When families were asked what information they would most like to access, recurring themes included: types of professional support for their child, the law and their child’s rights, transition, and leisure and social activities. This resource aims to be as helpful as possible by providing signposts to existing sources of information about these topics.

Families also reported a lack of sufficient information if their child has multiple conditions or complex needs or if they are looking for support that is not condition-specific. Therefore, this resource does not set out to be an exhaustive list of condition-specific information, nor a directory of local services; there is a focus on clarifying national policy and entitlements.

Families sought an improved understanding about the range of choices they felt they could make about support. Similarly, we know that access to clear and reliable information empowers families. Information needs to be shared consistently and in ways which are accessible for everyone. This resource aims to communicate information as inclusively as possible and makes particular note of how families can achieve more choice and have control over the care and support that they need and are entitled to.

Consultation

A consultation on the content ended on 5 September 2018, 110 responses were received. An engagement event tour of Scotland took place in 11 areas of Scotland. Presentations on the content, along with rich and useful discussions during the consultation period, helped reinforce the need for the resource as well as highlighting gaps in content which we since have aimed to address. The consultation asked people to comment on the content. However, many took the opportunity to tell us about their own experiences.  

You can find analysis of these responses in the published report.

Our vision for this resource

We aim to provide clear, accessible information on national policies, entitlements, rights and the different options for support available.  We have used real life stories of children and young people which can highlight how support or a service available in their area helped them. These stories are an example and may not be available in your area. The links to support throughout the website do apply for all people in Scotland. You can find more about what is available in your area at ALISS (A Local Information System for Scotland)

This website uses the social definition of disability which assumes that people are not ‘disabled’ because of their but because aspects of society, like public transport, schools or services often it difficult for them to participate fully and that they face barriers in their everyday life because of this.

In order to capture the complex nature of disability and the diverse range of people across Scotland who have a disability, this website doesn't try to give information specific to any one disability or to provide a directory of local services. We also know that transitions happen at different times for different people, so we haven't put in an age limit and hope that it will act as a layer of support, both for families raising a disabled child and for young people looking forward to the next stages of their lives.

If you are looking for condition specific information, you may wish to search the Disability Information Scotland Database. 

Disabled People's Organisations are organisations which are led by disabled people themselves and who work in co-production with Scottish and local governments to find the solutions.   Inclusion Scotland has a directory of Disabled People's Organisations.