Caring for a child with complex needs
Last updated: 14/12/2023
If a child has received a diagnosis of an illness, disability, or sensory impairment and requires extensive daily support, they are referred to as having “complex needs.” These needs may arise from birth or develop following an illness or injury.
For more information or support on help available for carers of children with complex needs,
you can contact our advisors at the Lone Parent Helpline
on 0808 801 0323,
Mon-Fri 9.30am – 4pm
Being a single parent can be isolating enough but caring for child with complex needs can be doubly challenging. While individual experiences vary, finding comfort in connecting with other parents who have children facing similar disabilities or health conditions as yours can be reassuring. These parents are likely to have encountered similar emotions and navigated through similar issues. Our forum provides a safe space for parents to talk.
Many charities who specialise in conditions classified as ‘complex needs’ have their own advice and information services. It is worth accessing these services for more tailored advice related to you and your child’s circumstances.
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.
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.
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 you 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 an helping 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.
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 Carers Allowance. In some areas this is being replaced with Scottish Carer Support Payment. You may also be entitled to Child Disability Payment. Our Lone Parent Helpline can help you work out what you are entitled to.
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.
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 wait 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.
Scottish Welfare Fund
The fund provides two types of grant:
- Crisis Grants to provide a safety net when someone experiences a disaster or emergency situation, such as a fire or flood and there is an immediate threat to health and safety.
- Community Care Grants to enable people to live independently or continue to live independently, preventing the need for institutional care. A CCG may also be able to help a family facing exceptional pressure.
To apply for a Crisis Grant or a Community Care Grant you must be 16 or older and on a low income. You can find more information here.
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 their 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
CEA card enables a disabled cinema guest to receive a complimentary ticket for someone 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.
Motability The Accessible Vehicles and Equipment Scheme helps to provide disabled people in Scotland with access to vehicles or mobility equipment. Anyone receiving the higher rate mobility component of Child Disability Payment, or the enhanced rate mobility component of Adult Disability Payment, is able to exchange it to lease a car, Wheelchair Accessible Vehicle (WAV), scooter or powered wheelchair through the Accessible Vehicles and Equipment scheme.
Disabled Persons Rail Card If your child is disabled or has a progressive medical condition they may be eligible for the Disabled Persons Railcard.