Caring for children with severe and complex needs

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. For example:

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. The hospital treating your child will be able to give you details of local groups.

Several charities run 'Listening Ear Services.' These allow parents to speak to other parents who have been where they are to get some advice and support.

Contact

Wellchild

Challenging Behaviour Foundation

Council For Disabled Children

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.

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. For example:

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. The hospital treating your child will be able to give you details of local groups.

Several charities run 'Listening Ear Services.' These allow parents to speak to other parents who have been where they are to get some advice and support.

Contact

Wellchild

Challenging Behaviour Foundation

Council For Disabled Children

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.

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.

Continuing Health Care Explained

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.

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.

Continuing Health Care Explained

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.

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 Gingerbread on 0808 802 0925 or Contact 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.

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.

Working Families advice for parents of disabled children

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 Kinship.

Hampshire also has support specifically for Kinship Carers.

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 Gingerbread on 0808 802 0925 or Contact 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.

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.

Working Families advice for parents of disabled children

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 Kinship.

Hampshire also has support specifically for Kinship Carers.

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.

If your child has severe and complex needs, 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.

More in formation about support from Children's Services for disabled children.

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.

Profound intellectual and multiple disabilities - Gaining Independence

Information for young people with SEND about transitioning to adult services

We have a whole section on this site to help young people with SEND prepare to become adults which has a whole range of helpful information on.

Preparing for Adulthood for young people.

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.

If your child has severe and complex needs, 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.

More in formation about support from Children's Services for disabled children.

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.

Profound intellectual and multiple disabilities - Gaining Independence

Information for young people with SEND about transitioning to adult services

We have a whole section on this site to help young people with SEND prepare to become adults which has a whole range of helpful information on.

Preparing for Adulthood for young people.

What will happen to my child after I die?

You may want to plan ahead for your child or young adult's future and make sure things are in place in case they outlive you.

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.

The Role of a Will

A will ensures your wishes are followed when you die rather.

Find out what would happen to your estate if you die without a will

Wills must be reviewed after major life events like marriage, divorce, or significant financial changes to make sure they still reflect your wishes.

Why Planning Matters

A trust is a legal arrangement where assets are held and managed by trustees for the benefit of your loved one.

Why would you want a trust?:

Even modest inheritances (e.g., £6,000) can threaten entitlement to means-tested benefits so if your disabled young person relies on benefits, an inheritance could mean they are no longer entitled.
If your loved one lacks capacity, the Court of Protection may appoint a deputy—potentially undermining your wishes.
There's increased risk of financial abuse when lump sums are received by young people with SEND without safeguards.

Understanding Trusts

Assets (cash, property, investments) are transferred to trustees under a trust deed for your loved one’s benefit.
Trusts can be set up during your lifetime or established by your Will.
Properly structured trusts preserve means-tested benefits, avoid court-appointed deputies, and provide lifelong financial support.
A Letter of Wishes (non-binding) allows you to guide trustees on how funds should be used—e.g., for hobbies, care, or holidays.

Key Roles: Executors, Trustees & Guardians

Executor: Carries out your Will—best to appoint two or more, which could include a solicitor.
Trustees: Typically overlap with executors but should be 2–4 trusted individuals responsible for ongoing management of the trust.
Guardians: If you have children under 18, appoint guardians to care for them upon your death.

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 or young person 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.

What will happen to my child after I die?

You may want to plan ahead for your child or young adult's future and make sure things are in place in case they outlive you.

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.

The Role of a Will

A will ensures your wishes are followed when you die rather.

Find out what would happen to your estate if you die without a will

Wills must be reviewed after major life events like marriage, divorce, or significant financial changes to make sure they still reflect your wishes.

Why Planning Matters

A trust is a legal arrangement where assets are held and managed by trustees for the benefit of your loved one.

Why would you want a trust?:

Even modest inheritances (e.g., £6,000) can threaten entitlement to means-tested benefits so if your disabled young person relies on benefits, an inheritance could mean they are no longer entitled.
If your loved one lacks capacity, the Court of Protection may appoint a deputy—potentially undermining your wishes.
There's increased risk of financial abuse when lump sums are received by young people with SEND without safeguards.

Understanding Trusts

Assets (cash, property, investments) are transferred to trustees under a trust deed for your loved one’s benefit.
Trusts can be set up during your lifetime or established by your Will.
Properly structured trusts preserve means-tested benefits, avoid court-appointed deputies, and provide lifelong financial support.
A Letter of Wishes (non-binding) allows you to guide trustees on how funds should be used—e.g., for hobbies, care, or holidays.

Key Roles: Executors, Trustees & Guardians

Executor: Carries out your Will—best to appoint two or more, which could include a solicitor.
Trustees: Typically overlap with executors but should be 2–4 trusted individuals responsible for ongoing management of the trust.
Guardians: If you have children under 18, appoint guardians to care for them upon your death.

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 or young person 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.

Caring for children with severe and complex needs

GP carers register

GP carers register

Personal health budget

Personal health budget

Respite care

Single parent carers of disabled children

Employment and single parents

Grandparent carers

Respite care

Single parent carers of disabled children

Employment and single parents

Grandparent carers

Independence in adulthood

Independence in adulthood

What will happen to my child after I die?

What will happen to my child after I die?

Useful links