Supporting disabled children, young people and their families: guidance

Support for the whole family

Bringing up, and caring for, a disabled child can and should be a positive and rewarding experience. It's really important that families with a disabled child or children are supported at an early stage to enable them to cope with the stresses and demands of their caring role, and to look after their own health and wellbeing. For families wondering where to start, the Scottish Government funds Care Information Scotland which also runs a Helpline on 0800 011 3200.

Whether you think of yourself as a carer or not, the information in this section might be helpful.

In this section you can find out…

• information for carers
• non-statutory support for unpaid carers
• voluntary sector short breaks
• supporting parents and carers with learning disabilities
• supporting parents of children with complex and exceptional healthcare needs 
• Life Story - Sibling Support – Laura and Connor
• All of my children deserve support
• more information 

Information for carers

Families of disabled children, including parents, siblings and the wider family, might need access to practical and emotional support in their own right. As well as any statutory support and any services your local council provides, there are lots of other sources of help for carers, including carers’ centres and carers organisations.

The Carers (Scotland) Act 2016

The Carers (Scotland) Act 2016 came into effect on 1 April 2018.  It puts in place a system of carers’ rights designed to listen to carers; improve consistency of support; and prevent problems – helping sustain caring relationships and protect carers’ health and wellbeing.

Anyone who provides or intends to provide care to another individual is a “carer” under the Act. Those carers who are under the age of 18 (or 18 and still at school) are “young carers”. You are not a carer if the care you provide is part of a contract of employment or as a formal volunteer.

Under the Act all adult carers and young carers now have a right to an adult carer support plan or young carer statement, setting out their own individual personal outcomes, identified needs and any support to be provided by the local authority to meet those needs. Local authorities must consider whether that support should consist of or include a break from caring.

Carers also have the right to be involved in decisions made about the statutory care and support provided for the person who is being cared-for. In practice, this means your local authority must take your views into account in assessing the needs of the person being cared for, as far as that is 'reasonable and practical'. They must also take account of the care that you are providing, or intend to provide. This means, for example, if you are able to provide care in the evening but not during the daytime, the support needs of the person you are caring for should be considered with this in mind.

If the person you care for is going to be leaving hospital, the health board have a duty to take appropriate steps to inform you of the intention to discharge and involve you in discussions about that process.

A number of resources have been produced on the Carers Act which will help you to understand what all your rights are as a carer and how you can access them:

• The Carers’ charter provides an overview of carers rights under the Act;

• Young Scot has a helpful infographic for young carers to help them understand their rights under the Carers Act; and

• Carers Trust Scotland has a Young Carers Jargon Buster for young carers to understand some of the complex terminology used in the Act.

Non-statutory support for unpaid carers

National Carer Organisations: 

• Guidance on Advocacy for Unpaid Carers - guidance which seeks to promote best practice in Scotland in relation to advocacy for adult carers.
• Carers Scotland  - provide support, information and advice for carers
• Carers Trust Scotland - promote awareness of carers and run a network of carers centres
• Minority Ethnic Carers of People Project - support people from minority communities with their caring roles
• Shared Care Scotland - support carers with access to non-statutory short breaks and run a national short breaks directory so you can find the right short break for you
• Crossroads Caring Scotland -  provide social care support in the home
• Coalition of Carers in Scotland -  run a network of carers and carer organisations and offer resources for carers and professionals
• https://careinfoscotland.scot/ - information and advice for carers

Local carers centres provide a range of support, information and advice for unpaid carers in Scotland.  You can visit Care Information Scotland to find out more and to locate your nearest carers centre. 

Voluntary sector short breaks

Allowing unpaid carers time away from their caring role is important to support them with their own health and wellbeing. As well as any statutory short breaks provided by local authorities under the Carers Act, we fund the voluntary Short Breaks Fund for carers and their families which is run on our behalf by Shared Care Scotland and Family Fund.  Please visit the websites to find out more about the different options within the Short Breaks Fund.

We also fund the Respitality project which supports local carers centres to build relationships with local and national leisure providers to offer packages for free to carers. The Shared Care Scotland funding directory  brings together information about funds available in each local authority area.

Supporting parents and carers with learning disabilities 

NHS Health Scotland is committed to providing accessible information to advance equality and reduce discrimination. NHS Health Scotland has worked with CHANGE, who are a leading national human rights organisation, led by disabled people to provide three pregnancy and parenting resources: My Pregnancy My Choice, You and Your Baby and You and Your Little Child which are Easy Read resources specifically designed to support parents with learning disabilities. These are available as an alternative to (or as well as) Ready Steady Baby! (RSB!) and Ready Steady Toddler! (RST!). 

Parenting Across Scotland provides information and support for parents and has a list of parenting helplines. This includes ParentLine Scotland . Right Click is an online programme for families of individuals on the autism spectrum who are in particular need of information and support. The service is administered by Scottish Autism who also have an advice line and various family support services. 

Supporting parents of children with complex and exceptional healthcare needs 

There are a number of useful services and resources to support you in caring for a child or young person with complex or exceptional needs.

The National Managed Clinical Network for Children with Exceptional Healthcare Needs (CEN) has useful resources for healthcare professionals, carers and families, like information on transitions and signposts to other helpful services. They also have information for parents and siblings of children with exceptional healthcare needs.

Life Story - Sibling Support – Laura and Connor

My name is Laura and I am seventeen years old. I live in Perth with my parents, an older sister and a thirteen year old brother, Connor.

At the age of nine, Connor was officially diagnosed with Autism. Soon after he was also diagnosed with ADHD. From a young age, it was apparent that Connor was not like other children. His ability to effortlessly complete a 500 piece jigsaw at age five and his extensive knowledge of all things dinosaur related was what caught our attention. As we had no previous experience of Autism, it took a while to request a diagnosis and to fully understand how to support him. 

Before a full diagnosis and the support of Perth Autism Support, life at home was very difficult and family relationships were strained. This was due to the intensity of his needs and the little knowledge that myself and my parents had of Autism and how to deal with those on the spectrum.

Life with Connor can be hard at times. I have spent many night in my room to escape from meltdowns and arguments, and struggles that the ordinary family wouldn't go through. From losing a board game on purpose so to not cause unnecessary situations, to having to do the things that he wants on a holiday or trip to town. This somewhat deprived myself and my sister some of the experiences that a young girl may go through, such as browsing shops or going out with friends as we also had to support Connor. Although we were very understanding, at a young age we didn't fully understand the extent to which Connor needed supported and, as typical siblings would do, tended to tease and wind each other up without realising the extra stress this caused due to escalated impact. 

In October 2018, I began volunteering at Perth Autism Support. I wished to be a volunteer and PAS was the first organisation to come to mind. As they had provided so much support and help for my family, I thought it only right for me to give something back. My time at PAS has improved my ability to assess situations and assist where necessary, which is certainly apparent in the home environment. This has benefitted both myself and my family. It has allowed me to learn and cope with other situations as well as enhanced life skills. Being at PAS five hours a week and working with many children of different ages has increased my knowledge of Autism as a whole and the training which I am being provided with has allowed me to also help Connor at home in more constructive ways.

All of my children deserve support

Brothers and sisters of disabled children have to show maturity beyond their years. It can mean they face emotional and practical strains in their own lives; struggling to get enough time and attention from their parents, and sometimes with anxiety and other mental health issues. Young carers are specifically supported by the Carers (Scotland) Act 2016 which means that responsible authorities have to offer a young carer statement to all identified young carers.  Young Scot has a resource hub for young carers.

Shared Care Scotland have a funding directory for help with short breaks and local directory for carer support. Care Information Scotland also have a Freephone helpline and information about carers' centres.

Signposts to parenting resources such as the Learning Together Action Plan and information like Ready Steady Baby/Toddler or Feedgood.

Parenting across Scotland provides support for parents and families through our information service and partners' helplines.

More information

Contact have lots of information and advice for families on a wide range of topics, such as benefits, education and legal advice. Their website also has a section which provides information about medical conditions and diagnosis. They have a free helpline, which you can call on 0808 808 3555.

Sibs provide support for  people who grow up with or have grown up with a disabled brother or sister. If you are being bullied, RespectMe is Scotland's anti-bullying service.

Quarriers are a social care charity who provide practical care and support for vulnerable children, adults and families who face extremely challenging circumstances. They challenge poverty and inequality of opportunity to bring about positive changes in people’s lives.

Enable has information about emergency planning for carers.

NHS Choices gives more information on lots of topics, from education to respite care.