Caring for children with complex needs

If your child has been diagnosed with an illness, disability or sensory impairment that needs a lot of additional support for them to live day to day, they might be described as having "complex needs". A child might have complex needs from birth, or following an illness or injury.

Read on or click on the links below for more information:

• Support after diagnosis
• Your child's medical needs
• Daily living with a disabled child
• Lifelong care for a disabled child

Support after diagnosis

Although everyone's experience will be different, it can be reassuring to speak to other parents who have children with the same disability or condition as yours. They're likely to have been through the same emotions and processes as you.

Many organisations have online forums or message boards for parents. The charity Bliss can provide advice and support to families with a baby in special care. There also may be local groups for parent carers in your area.

If you want to speak to an adviser about support services for parent carers, you can contact Carers Direct on 0300 123 1053 from 9am to 8pm Monday to Friday, and 11am to 4pm at weekends (closed bank holidays). Or you can use the textphone/minicom number 0300 123 1004.

GP carers register

If your GP's surgery has a carers register, ask to be included on it. If your GP knows that you're a carer, they can keep an eye on your own health and you'll have someone you can speak to in confidence about how you're feeling. They can also advise on local organisations and carers services that may benefit both you and your child now and in the future.

Learn about your child's condition

Once you have a clear diagnosis, you'll probably want to find out as much about the condition as you can. When researching online, look out for the Information Standard mark, which confirms that the information is reliable. Also: 

• You can also contact condition-specific organisations for advice and guidance on your child's condition, such as the Down's Syndrome Association.
• The Carers Direct helpline (0300 123 1053) can provide contact information on condition-specific referrals, plus contact details of local carers' centres that can also support you and your family. 
• The health professional involved in your child's care may also have useful literature they can give you, so don't be shy about asking. Find out more ways to make the most of your appointment.

Your child's medical needs

Your child's medical and healthcare needs are the responsibility of your local NHS health services. This includes any medical equipment, such as special beds, bed equipment, hoists, and aids to help with incontinence, mobility or hearing. Equipment is usually provided as a free loan, and can be organised by a health professional working with your child.

If your child needs regular healthcare treatment at home, your family may be supported by community children's nurses. These nurses can also help you with any treatment that you need to carry out for your child, such as giving oxygen or administering injections.

The health professionals involved in your child's care should be available to talk to you. If you have questions or concerns, it can be helpful to write these down before you meet. You could also ask them to give you any information both verbally and in writing. Building a trusted relationship with someone who works closely with your child can be a valuable source of support.

Your child may receive a 'continuing care package' if they have needs arising from disability, accident or illness that can't be met by existing universal or specialist services alone. The package could include a range of services commissioned by local authority children's services and sometimes others. Find out more about continuing care for children and young people.

Personal health budget

Children who have a continuing care package have the right to have a personal health budget so that their families and carers can have more control over their care. Find out more about personal health budgets.

Daily living with a disabled child

Your local authority is responsible for providing any non-medical care services that your child is assessed as needing. This could include equipment for daily living, care for your child at home, access to play schemes and respite care so that you can get a break.

To access services from your local authority, you'll need to ask for a needs assessment. Your needs, and the rest of your family's, can be taken into account during your child's assessment. If the assessment doesn't address your needs as a carer, you can ask for your own carer's assessment.

• Get advice on childcare options.
• Get tips on caring for a disabled child.
• Find out more about financial benefits for parent carers. 

Your child's education

If your child has a disability or learning difficulties that make it harder for them to learn or to access education compared to other children the same age, they may be described as having special educational needs (SEN).

Support is available to help children with SEN to get as much as they can from the education system.

Early Support Programme

The Early Support Programme provides information and resources on health, education and social care to families with disabled children under the age of five and anyone working with them. The programme is being used in local authorities, hospitals and health centres across England. The aim is to provide co-ordinated, linked-up support for families with very young disabled children.

For more information, visit Early Support Programme on GOV.UK.

Respite care

Time away from your child can often be beneficial for you both. Being overwhelmed and exhausted by your caring responsibilities can lead to ill health.

If family and friends can't always step in, respite care may be an option for you. Your GP or social worker will be able to discuss all the options available to you and organise the care. Alternatively, you could pay for respite care privately.

Find out more about carers' breaks and respite care.

Single parent carers of disabled children

There are lots of organisations specifically aimed at single parents, including those with disabled children, which can provide information and advice, such as Gingerbread.

Local support groups can provide you with the opportunity to talk to other single parents. Some groups run drop-in centres or offer home visits providing practical advice on benefits. Your local group may also publish a newsletter covering activities in your area or offering help with organising respite care.

For more support, you can call the Single Parent Helpline on 0808 802 0925 or Contact a Family on 0808 808 3555.

Single parents of disabled children may be entitled to a range of additional support including Child Maintenance and Income Support. For further details and to find out what you are eligible for, use GOV.UK's online benefit calculators.

• Get advice on raising your child as a single parent. 

Employment and single parents

If you are working and have a child aged 16 or under, or aged under 18 and claiming PIP, you have the right to ask your employer for flexible working. This includes changing the number of hours you work, the days or times you work, or applying for job share.

Grandparent carers

Grandparents sometimes assume full-time care of their grandchildren. Looking after children can be a physical and financial strain at any age, but particularly so if you are older. Advice and support on being the sole carer of a grandchild is available from grandparent organisations such as The Grandparents' Association or Grandparents Plus.

Lifelong care for a disabled child

It's natural to be concerned about your child's future if they are born with an illness or disability, or diagnosed at an early age.

It's worth asking your local authority for an assessment of your child's needs, as well as your own needs as a carer. The local authority should consider the needs of your whole family, especially if you have other children who may be young carers themselves. To find out about assessments, call the Carers Direct helpline on 0300 123 1053.

Find contact details for your local authority.

Independence in adulthood

Many young people who have disabilities live independent lives, while others may always need significant care. Even if they have high caring needs, with the right support your child may still be able to live independently. The video on this page shows how Victoria, who has profound intellectual and multiple disabilities, lives in her own home and employs her own personal assistants.

Many organisations can offer advice about managing a young person's transition into adulthood. You can find contact details for these organisations in the directory of local carers' services.

What will happen to my child after I die?

You may want to plan ahead for your child's future and make sure things are in place in case they outlive you. If your child has a physical disability, they might need someone to help them with personal care or transportation.

If your child has learning disabilities, they may require specialist provisions such as sheltered housing, care homes or specialist nursing care.

Making a plan for their future will ensure that your child will continue to be looked after without interruption if you die. By planning this in advance you will be able to arrange care that meets your expectations.

Make a will

Writing a will can help you address all the fears you may have about what will happen to your children when you die. You can write a will through a solicitor, using a will writing pack or using online will writing services. Whichever option you choose you should research the requirements and decide whether you are confident about writing the will for yourself or if you would like to have professional help.

You might have family or friends who could care for your child in an emergency or would be willing to look after your son or daughter if you die. If this is the case you may want to make a will explaining your wishes for your child. It's also a good idea to let social services know about this in advance and to include them in an emergency care plan.

If friends and family can't help out, speak to social services about the best options for your child.

Written instructions

It will help your child and those who may need to care for your child if they know exactly what has to be done each day. You could keep a log of the food and drinks that your child likes and dislikes, what time they wake up and go to bed, what time they need their medication and so on. Doing this will make life easier for your child and their new carer.

Care plans

A care plan is a good way to ensure that if you fall ill and are unable to care for your child, or if you die, your child will be properly looked after. Even if you have made arrangements for emergencies, it is essential to make an emergency care plan for your child's care, especially if they have complex needs.

The care plan should include your child's details, medical requirements and contact names and numbers in case of an emergency. Your local authority will help you develop an emergency care plan when they carry out an assessment for your child under the Children Act.

Article provided by NHS Choices

See original on NHS Choices