Skip to content

Life Long Care of a Disabled Child

Up to the age of 18, support is usually provided by children’s health, education and social care services.

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.

From 18 onwards, support moves to adult services. This includes:

  • adult social care
  • adult health services
  • housing support
  • benefits

This change is called transition. It should be planned with you and your child over time—not happen suddenly

Planning for adulthood should begin early—usually from Year 9 (age 13–14).

This is called Preparing for Adulthood, and it focuses on helping your child to:

  • be as independent as possible
  • have somewhere suitable to live
  • stay healthy
  • build relationships and take part in the community
  • access education, training or work

It is important to know:

  • This transition should be planned and gradual
  • You are still involved and can ask questions
  • Support may change, but your young person should not be left without help

Ages 14–16 (Year 9 onwards)

  • Preparing for Adulthood planning begins
  • EHCP reviews focus on future goals
  • Early discussions about independence, work and living options

👉 This stage is about starting to think ahead

Ages 16–18

  • Post-16 education choices (college, training)
  • Increasing focus on independence skills
  • Begin planning move to adult services
  • Health transition discussions should start

👉 This stage is about building skills and making plans

Ages 17–18

  • Transition assessment for adult social care
  • Discussions about future housing
  • Applications for adult services or support
  • Possible move to adult healthcare providers

👉 This stage is about formal planning for adulthood

Age 18+

  • Move to adult services
  • Adult care package may begin
  • Access to benefits (e.g. PIP)
  • Housing or supported living may be arranged

👉 This is when adult systems take over

Ages 18–25 (if EHCP remains in place)

  • Continued support with education or training
  • Ongoing development of independence
  • Review of long-term housing and support needs

👉 This stage is about settling into adult life

Planning for adulthood should begin early—usually from Year 9 (age 13–14).

This is called Preparing for Adulthood, and it focuses on helping your child to:

  • be as independent as possible
  • have somewhere suitable to live
  • stay healthy
  • build relationships and take part in the community
  • access education, training or work

It is important to know:

  • This transition should be planned and gradual
  • You are still involved and can ask questions
  • Support may change, but your young person should not be left without help

Ages 14–16 (Year 9 onwards)

  • Preparing for Adulthood planning begins
  • EHCP reviews focus on future goals
  • Early discussions about independence, work and living options

👉 This stage is about starting to think ahead

Ages 16–18

  • Post-16 education choices (college, training)
  • Increasing focus on independence skills
  • Begin planning move to adult services
  • Health transition discussions should start

👉 This stage is about building skills and making plans

Ages 17–18

  • Transition assessment for adult social care
  • Discussions about future housing
  • Applications for adult services or support
  • Possible move to adult healthcare providers

👉 This stage is about formal planning for adulthood

Age 18+

  • Move to adult services
  • Adult care package may begin
  • Access to benefits (e.g. PIP)
  • Housing or supported living may be arranged

👉 This is when adult systems take over

Ages 18–25 (if EHCP remains in place)

  • Continued support with education or training
  • Ongoing development of independence
  • Review of long-term housing and support needs

👉 This stage is about settling into adult life

Up to age 18, your child is supported by children’s services.

After 18, support usually moves to:

  • Adult social care (Hampshire County Council)
  • Adult NHS services (Hampshire and Isle of Wight NHS)
  • Housing and community support services

Up to age 18, your child is supported by children’s services.

After 18, support usually moves to:

  • Adult social care (Hampshire County Council)
  • Adult NHS services (Hampshire and Isle of Wight NHS)
  • Housing and community support services

If your child has severe and complex needs, they may have been supported under the Disabled Children's Team. This team should plan a transition with you to adult social care. If your child is not under the Disabled Children's Team it's worth asking the Independent Futures Team for an assessment of your child's needs, as well as your own needs as a carer. 

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

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.

See our Preparation for Adulthood section for young people

If your child has severe and complex needs, they may have been supported under the Disabled Children's Team. This team should plan a transition with you to adult social care. If your child is not under the Disabled Children's Team it's worth asking the Independent Futures Team for an assessment of your child's needs, as well as your own needs as a carer. 

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

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.

See our Preparation for Adulthood section for young people

Housing options include:

Living at home

Some young adults stay at home if their parents are happy and able to accommodate them and it is what the young person wants as well. 

Supported living

  • Living in a flat or shared house
  • Support staff visit or provide regular care
  • Encourages independence while keeping support in place

Residential care

  • 24-hour support in a specialist setting
  • Usually for people with more complex or medical needs

Other options

  • Shared Lives (living with a supporting family)
  • Specialist disability housing

👉 There is no “right” option—what matters is what works best for your young person.

Getting a place to live as an adult with additional needs is usually a joint process between housing and social care. Adult Services will carry out an assessment to understand your young person’s needs and recommend the right type of housing and support. In some cases, you may also need to apply to the housing register, but this depends on the type of accommodation your young person needs.

See our guide for young people on finding accommodation

Housing options include:

Living at home

Some young adults stay at home if their parents are happy and able to accommodate them and it is what the young person wants as well. 

Supported living

  • Living in a flat or shared house
  • Support staff visit or provide regular care
  • Encourages independence while keeping support in place

Residential care

  • 24-hour support in a specialist setting
  • Usually for people with more complex or medical needs

Other options

  • Shared Lives (living with a supporting family)
  • Specialist disability housing

👉 There is no “right” option—what matters is what works best for your young person.

Getting a place to live as an adult with additional needs is usually a joint process between housing and social care. Adult Services will carry out an assessment to understand your young person’s needs and recommend the right type of housing and support. In some cases, you may also need to apply to the housing register, but this depends on the type of accommodation your young person needs.

See our guide for young people on finding accommodation

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

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

Once a young person becomes an adult or shortly before, they should move from paediatric (children’s) services to adult services. This should be planned in advance as part of transition

If ongoing specialist care is needed, they should be referred to an adult consultant or service

There isn’t always a single pathway, and it can vary depending on:

  • the condition
  • how specialist the care is
  • whether an adult service exists

So in practice, young people may:

  • move to an adult specialist service (e.g. neurology, respiratory)
  • be discharged to their GP, who monitors their health
  • continue some support via community or therapy services

Being discharged to a GP with annual health checks happens particularly where:

  • the condition is stable
  • no ongoing specialist input is required

Even if your child has been discharged back to their GP:

  • The GP can still refer back to specialist services if needed
  • You can ask for a review or reassessment at any time

Adult services may look different, but support should not disappear altogether

Once a young person becomes an adult or shortly before, they should move from paediatric (children’s) services to adult services. This should be planned in advance as part of transition

If ongoing specialist care is needed, they should be referred to an adult consultant or service

There isn’t always a single pathway, and it can vary depending on:

  • the condition
  • how specialist the care is
  • whether an adult service exists

So in practice, young people may:

  • move to an adult specialist service (e.g. neurology, respiratory)
  • be discharged to their GP, who monitors their health
  • continue some support via community or therapy services

Being discharged to a GP with annual health checks happens particularly where:

  • the condition is stable
  • no ongoing specialist input is required

Even if your child has been discharged back to their GP:

  • The GP can still refer back to specialist services if needed
  • You can ask for a review or reassessment at any time

Adult services may look different, but support should not disappear altogether

Universal Credit for a child usually stops on 31st of August following their 16th birthday. However, it can continue until the 31st of August after their 19th birthday if they remain in approved, full-time, non-advanced education or training. Usually young people transition to from Disabled Living Allowance to Personal Independence Payments at around 16 years of age.

For parents to continue to receive benefits for a young person they must be classed as a “qualifying young person”.

When is a young person considered “qualifying”?

A young person is usually a qualifying young person if they are:

  • under 20, and
  • in full-time non-advanced education (for example GCSEs, A levels or college courses), or
  • in approved training

When are they not a qualifying young person?

They may not be classed as a qualifying young person if they:

  • are 20 or over
  • move into higher education (such as university)
  • leave education or training (outside certain short extension periods)

If this happens, they are treated as an adult in the household, and benefits for them as a child will usually stop.

Applying With Capacity

If your young person can understand, retain, and weigh information to make decisions, they apply directly.

You can assist them to apply or an organisation like the Citizens Advice can help them.

Applying Without Capacity (Appointeeship)

If a person cannot manage their benefits due to mental incapacity, severe disability, or illness, someone else must act for them. This person is called an appointee.

What an Appointee Does: The appointee manages the application, receives payments, and reports changes to the DWP.

How to Become an Appointee:

    1. Contact the DWP: Call the specific department (e.g., PIP helpline, Jobcentre Plus) and explain that the claimant lacks capacity to manage their own benefits.
    2. Assessment: The DWP will interview the potential appointee to ensure they are suitable and may visit the claimant.
    3. Approval: Upon approval, the appointee manages all DWP benefit claims. Note that this does not automatically cover other financial affairs or legal decisions (which might require a Deputy or Power of Attorney).

Universal Credit for a child usually stops on 31st of August following their 16th birthday. However, it can continue until the 31st of August after their 19th birthday if they remain in approved, full-time, non-advanced education or training. Usually young people transition to from Disabled Living Allowance to Personal Independence Payments at around 16 years of age.

For parents to continue to receive benefits for a young person they must be classed as a “qualifying young person”.

When is a young person considered “qualifying”?

A young person is usually a qualifying young person if they are:

  • under 20, and
  • in full-time non-advanced education (for example GCSEs, A levels or college courses), or
  • in approved training

When are they not a qualifying young person?

They may not be classed as a qualifying young person if they:

  • are 20 or over
  • move into higher education (such as university)
  • leave education or training (outside certain short extension periods)

If this happens, they are treated as an adult in the household, and benefits for them as a child will usually stop.

Applying With Capacity

If your young person can understand, retain, and weigh information to make decisions, they apply directly.

You can assist them to apply or an organisation like the Citizens Advice can help them.

Applying Without Capacity (Appointeeship)

If a person cannot manage their benefits due to mental incapacity, severe disability, or illness, someone else must act for them. This person is called an appointee.

What an Appointee Does: The appointee manages the application, receives payments, and reports changes to the DWP.

How to Become an Appointee:

    1. Contact the DWP: Call the specific department (e.g., PIP helpline, Jobcentre Plus) and explain that the claimant lacks capacity to manage their own benefits.
    2. Assessment: The DWP will interview the potential appointee to ensure they are suitable and may visit the claimant.
    3. Approval: Upon approval, the appointee manages all DWP benefit claims. Note that this does not automatically cover other financial affairs or legal decisions (which might require a Deputy or Power of Attorney).