Caring for a child with complex needs

Recognising your needs

When you are caring for a child with health conditions or additional needs a lot of your focus is on their health and wellbeing. It is easy to neglect your own needs. It is important to recognise issues with your own health and wellbeing and find support that allows you time for yourself.

Our My Life and Me website has ideas and tips for coping as a single parent.

Contact is a support charity dedicated to assisting families with disabled children. Their mission is to empower parents and caregivers by providing them with confidence and information regarding the challenges of raising a disabled child.

Contact operates a free listening ear service. This service allows for one-to-one telephone appointments with a family support adviser. If you are a parent or caregiver seeking a supportive conversation, this service is designed to provide reassurance, as well as practical and emotional support.

Adult Carer Support Plan

If you’re a carer, the adult social work team at your local council should offer you something called an Adult Carer Support Plan (ACSP). If you’re a young carer, your local council should give you a Young Carer Statement to help support you.

If no one’s mentioned this to you yet, it’s a good idea to reach out to your local council and ask. You can give them a call, send a message online, or write to them—whatever feels easiest. You don’t have to wait until you start caring for someone. You can ask for support even before you officially start that role.

You deserve support too. You’re not in this alone.

Taking a short break

You might be able to take a short break from your caring responsibilities through the support in your Adult Carer Support Plan or Young Carer Statement. These short breaks—sometimes called “respite care”—are there to give you some time for yourself. You can rest, recharge, and just take a breather.

While councils don’t have to provide short breaks, they do need to think about whether that kind of support would help you, so it’s definitely worth asking about.

Caring for someone is a big deal and making sure you’re okay matters too.

Recognising your child’s needs

Schools and learning

Schooling can be difficult for children with additional support needs. It can be a struggle to know what the right support looks like for your child.

Enquire is the Scottish advice service for additional support for learning. They can provide advice on children’s rights to additional support for learning and help families find local education and support services.

The Scottish Government website has more information about additional support for learning and the rights young people have when it comes to support for learning.

Loneliness and isolation

Having complex needs can be isolating for children and young people. There can often be difficulties making and maintaining friendships.

Sense Scotland runs a Virtual Buddying Service for disabled people (aged 5 and over) who are experiencing loneliness.

Financial support

If your child has a complex support need then it is important you ensure you are getting the correct financial support.

If you spend over 35 hours a week caring for your child due to their health or disability, you may be entitled to Carer Support Payment. This has replaced Carer’s Allowance in Scotland.

You may also be entitled to Child Disability Payment.

Our Lone Parent Helpline can help you work out what you are entitled to.

Dealing with your child’s challenging behaviour

Challenging behaviour in a child is behaviour which either puts that child at risk, or puts others around them at risk. It can also include behaviour which generally decreases quality of life.

This can include:

• aggression
• self-harm
• destructiveness
• disruptiveness

This type of behaviour can be seen in people with complex needs, and it’s important to be understanding when this happens. It might be a good idea to try and figure out what “triggers” this type of behaviour. For example, if you find that your child’s behaviour becomes challenging when they’re in large groups and crowds, one possible solution could be to arrange for them to be a part of smaller groups or get one-to-one help, and avoid crowded situations.

If you’re struggling to manage your child’s challenging behaviour, or if their behaviour becomes a risk to themselves or others, you will need to intervene calmly and it would be a good idea to visit your GP. Your GP can then refer you to a specialist.

Our My Life and Me website has information and tips for coping with your child’s emotions and behaviour.

Find out more about dealing with challenging behaviour on the NHS website.

Read about healthy sexual behaviour and development in young people.

Adaptations and help at home

If your child is living with a disability or a long-term health condition, you may find it necessary to seek additional assistance for managing family life. Your local authority’s Social Work department is obligated to evaluate the needs of your child through a Section 23 Assessment, referencing the relevant section of the Children (Scotland) Act 1995.

Most local authorities have specialised social work teams dedicated to supporting children with disabilities, and you can find their contact details on your local council’s website. Find your local council’s website.

Social work departments typically establish ‘eligibility criteria’ to prioritise services and support based on the level of need. Keep in mind that there might be a waiting list for the assessment. A social worker will visit your home to assess your child’s needs, taking into consideration various factors such as their health, behaviour, family circumstances, and the home environment.

Grants and other help

You may be able to access other forms of support to help you and your child. We have listed some below, please remember to check eligibility and make sure you meet the criteria before applying:

• Family Fund provide a wide range of grants to families living in Scotland raising a disabled, or seriously ill, child or young adult on a low income. They also run the Take a Break scheme which provides grants for disabled children and their families. Take a Break grants can be used for a break away, towards leisure activities or outings; sports equipment and more
• John Watson Trust – Awards grants for educational purposes to children and young people up to and including the age of 21 who have a physical or learning disability or who are socially disadvantaged
• CashforKids –  Support children from birth up to and including 18 years of age who are vulnerable, come from disadvantaged backgrounds or are living with an illness or disability
• Turn2us – Can help parents check that they are receiving all the benefits that they are entitled to, and search for trust grants that they can apply to directly
• Disability Grants – web search allowing you to save time finding Disability Grants

Accessibility and Transport

If you drive you could apply for a Blue Badge.

If you have a specific type of vehicle because of your child’s complex needs, you could apply for a road tax exemption.

CEA card enables a disabled cinema guest to receive a complimentary ticket for someone else to go with them when they visit a participating cinema. The Card is also one way for cinemas to make sure they look after their disabled guests. If you require an adjustment to visit a cinema because of your disability, cinema staff should make them for you whether you have a CEA Card or not.

Euan’s Guide has lots of reviews about the accessibility level of different sites around the UK, written by disabled people, for disabled people.

Parent Club have a page dedicated to accessibility when getting out and about with a disabled child.

Disabled Persons Rail Card If your child is disabled or has a progressive medical condition they may be eligible for the Disabled Persons Railcard.

Organisations that can help:

• Cereba
• Scottish Autism
• Sense Scotland
• Enquire
• Epilepsy Scotland
• Children’s Health Scotland
• Child Brain Injury Trust
• Carers Trust Scotland