Planning disability care after a carer dies

This information applies to England and Wales.

When the carer of a disabled relative is unwell or dies, it can be hard to know how to help. You may have questions about:

• who will care for your disabled relative
• where they'll live
• how they'll manage financially
• how they'll cope without their carer

What support they can get depends on their situation. There are lots of organisations that can give you advice.

Gather information

You'll need details about your disabled relative’s situation to help them. Try to find out practical things, such as:

• who owns the property they live in
• if their carer has Power of Attorney or is their deputy
• if they work or volunteer
• benefits they get‬‬‬‬‬‬‬‬
• if they will inherit money or have savings
• support they get from their local council or social services
• their health and wellbeing
• regular activities they do, like going to a day centre
• family or friends they see regularly

You'll also need to understand how their carer has supported them. For example:

• personal care
• chores like shopping, cooking and cleaning
• driving or helping with transport
• managing money
• emotional support

Having these conversations can be difficult, especially when someone is unwell. But having this information will help you get the right support.

Your relative's needs and preferences

Think about your relative's needs and the things that are important to them. This might include:

• personal care, grooming and clothes
• lifestyle choices like what they eat and when they like to sleep
• friends and social life
• things they enjoy
• how they communicate
• their religious or spiritual beliefs
• practical things like managing money, shopping and paying bills

If the carer has died and your relative cannot easily tell you about their needs, contact:

• a person who knows them well
• or a charity related to their condition

They can advise you on ways of communicating, and how to support your relative while they’re grieving.

Get advice

Once you've gathered information, you can get free impartial advice by contacting:

• Citizens Advice to understand your relative’s rights
• your local council about housing and social care
• Shelter England or Shelter Cymru about housing advice and advocacy
• Scope’s helpline about benefits and money
• Marie Curie support line if the carer is terminally ill or has died

You may also get support from:

• charities related to your relative’s condition
• organisations related to the carer’s employment, for example if they worked for the armed forces, police or fire services

Ask for a needs assessment

Your relative’s council can assess their social care needs. Social care services can include:

• help at home from a paid carer
• meals on wheels
• home adaptations
• disability equipment and assistive technology
• sheltered housing and care homes

If they already get social care and their situation changes, they will need another assessment. You can ask for an assessment at any time.

Getting a social care needs assessment

Continuing healthcare

If your relative is disabled and has a primary health need, they could be eligible for NHS continuing healthcare (CHC). This is funding from the NHS to pay for the medical care and support they need.

They do not pay anything towards continuing healthcare. It does not affect benefits or pension payments.

NHS continuing healthcare (CHC)

Housing and social care

If your relative lives in a rented or owned home and is not named on the tenancy or mortgage, contact the landlord or a solicitor for advice.

Staying in your council home when someone dies (Citizens Advice)

There are different housing options depending on their needs if they cannot stay in their home. These include:

• Care homes (NHS) where you get support based on your needs
• Supported or sheltered housing in the community through the council or a housing association
• Supported living services (NHS) where you live in a self-contained flat and get support with things like personal care and meals.
• Homeshare schemes where you're matched with someone who wants to share their home.

The housing they choose may affect their benefits and social care.

Getting more suitable accommodation and moving house

Moving to a new home: housing options (NHS)

Paying for housing and social care

There may be financial support to help your relative pay for housing and social care, including:

• housing payment through Universal Credit
• Council Tax Reduction
• Discretionary Housing Payment
• a personal budget for social care from the council

If they're eligible for Universal Credit, housing payment can help pay for:

• rent from a private landlord
• rent and some service charges through a housing association or local authority
• interest payments on a mortgage

Housing costs and Universal Credit (GOV.UK)

Benefits and money

Means-tested benefits and social care your relative gets can be affected by:

• a change in where they live and who they live with
• getting money or property from inheritance 
• getting money in a will trust 

They might get more or less in benefits or support. Or they may no longer be eligible for them.

Claiming Benefits - Change in circumstances (Turn2us)

Universal Credit has replaced older benefits known as legacy benefits (MoneyHelper)

If your relative gets these, a change in their circumstance may mean they’ll need to change to Universal Credit.

What changes in circumstances might trigger a move to Universal Credit (entitledto)

Savings and inheritance

Going over savings or income limits can affect your relative’s benefits and social care.

Money in a discretionary trust does not count towards income or savings limits. But giving money directly to your relative from their discretionary trust could affect their benefits or social care.

If they cannot manage their money, you may need to think if you or another trusted relative or friend can help them.

Managing money for someone else

Emotional support and grief

Everyone copes with illness and death differently. Try not to assume how your relative is feeling or pressure them into talking.

You could:

• let them know you’re there to listen and help
• offer to do specific tasks to help
• give them time and space if they need it

Grief after bereavement or loss (NHS)

Easy read booklets about dying, death and feelings (Marie Curie)

Support for grieving children and young people (Winston’s Wish)