Independent living

There may be support available to help you or someone you know live more independently after a brain tumour diagnosis. 

We know that receiving a brain tumour diagnosis can be devastating in so many ways and that regaining and maintaining your independence after a diagnosis can be particularly difficult.

So we’ve put together some information that may help you to live independently, from the different types of support you may be able to get, to housing options, including getting adaptations made to your home.

What types of housing are available?

For young people, having a brain tumour often means that they’ve never lived on their own before or have had to move back in with their parents. It’s natural that, at some stage, you may start to think about living on your own.

The most common types of housing options include:

Supported accommodation. Also known as sheltered accommodation, this is rented housing with support from a support worker or a care worker. This can be long- or short-term.

Local authority housing. Low-rent housing provided by the local authority or housing association. These are often long-term tenancies.

Privately rented. Renting a property from a private owner or agency acting on behalf of a private owner. These are often short-term tenancies and can be unstable.

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What is supported accommodation?

You might look into supported or sheltered housing if you’d find it difficult to manage in your own home. This could be due to physical or cognitive difficulties caused by your brain tumour.

There are different types of supported accommodation to help people with different levels of need, including support in your own home. Examples of support you may be able to get in your own home include:

• personal care to help you wash, get dressed, shave and most other things to do with personal hygiene
• home help to support you with household chores such as vacuuming, making beds, washing, shopping and cooking
• floating support to assist with things such as budgeting, maintaining your tenancy, helping with benefits, cooking, accessing support, education or training.

As well as help at home, supported accommodation can be in the form of group homes or short-stay supported housing. These usually have staff available on site, with the type and level of support based on your individual needs. Some supported housing has staff available 24/7, while others have staff that are available from 9.00am–5.00pm, Monday to Friday.

The accommodation itself can be varied. In some, you may have your own self-contained flat within a small community group with staff based in an office in the same building. In others, you may have a communal kitchen and living room, but your own bedroom and bathroom.

How do I apply for supported accommodation?

In some cases, you can apply directly to the supported housing provider

But, for others, you need to be referred by your local authority adult social care team. You can directly refer yourself to the adult social care team, or someone you know (a parent or carer) can refer you.

The social care team will do a needs assessment to establish your level of need. If they agree you fit the criteria of the supported housing project, they’ll then discuss any financial costs you may need to pay and what they will contribute. 

In most cases, if an assessment has been done and it’s been deemed that supported housing is necessary, social care usually cover this cost, but it’s important to check this with the social worker. Once this has been agreed, they will complete the referral.

If you directly apply to a social housing project or for floating support, you may still qualify for help with some or all of the costs, as these can be expensive. You can request an assessment from your local authority adult social care team. 

Local authority housing

If you’re over 18, you can apply for local authority housing (also known as social housing or choice-based letting) through your local council. Each council has its own rules, but most local authorities now have an online application process.

This type of housing is very sought after because the rent for these properties is often much lower than private rented accommodation. It’s also much more stable than private rented accommodation, once you’ve passed your initial introductory tenancy (which is usually between 6 and 12 months). After this, you’ll often be offered a secure tenancy, which makes it difficult for the landlord to end your tenancy without a justified reason such as non-payment of rent.

How do I apply for local authority housing?

To apply for this, you’ll need to share details about your current circumstances, including details of your current living arrangement, why you need social housing, income (benefits, employment details) and details of anyone who’ll be living with you. You’ll also need to complete a medical assessment form. 

The local authority will then assess your application and put you in a band based on your level of need. Most councils do this on a point scoring system. Some local authorities will give you a band number, others a band letter. Your band number or letter will give you an idea of your priority level. You’ll then be given a bidding number and each week you can bid on properties in your chosen area.

There’s usually a long waiting list for social housing and this can take a number of years of bidding regularly to be successful.

Privately rented property

This is any property that’s owned by a person for the purpose of renting it out.

Privately-rented accommodation is often expensive. According to reports by the National Housing Federation, less than 3% of rooms available to rent and less than 5% of family homes are affordable under the Local Housing Allowance cap.

Landlords also often want large deposits and at least one month’s rent in advance. Some letting agents and private landlords also charge administration fees, which can run into several hundreds of pounds. So you should always ask about any hidden fees.

Renting from a private owner or agency acting on their behalf can also be unstable. Tenancies are often short-term and landlords can decide not to renew the tenancy after the initial tenancy (usually six months) has expired. 

They can also ask you to leave the property at any time after the initial tenancy period has ended, giving just four weeks’ notice to move out. Landlords also don’t have to tell you why they are ending the tenancy and can do this for any reason, such as wanting to sell the property or move back in themselves.

How do I find privately rented housing?

To find privately rented properties, look online through letting agents like Rightmove or Zoopla, or look in local newspapers for houses privately advertised. If you’re claiming benefits you can ask your local council, as they often keep a list of landlords that accept tenants claiming benefits.

Will I be able to afford to live on my own, if I don’t work or am on a low income?

There is support available, and although the financial support available for housing for under 35s is quite limited, there are options. If you’re under 35, on a low income or unable to work and claiming benefits, you are eligible for what’s called the Shared Accommodation Rate (SAR) of housing benefit or Universal Credit housing costs.

What does this mean?

Each local authority sets a limit on the amount of money (housing benefit or Universal Credit housing costs) they will pay to landlords to cover the rent for people who are on benefits or a low income. This is determined according to the size of the property and, in the case of under 35s, the age of the person.

The Shared Accommodation Rate is is set according to the Local Housing Allowance rules in the area you live in. It sets the maximum amount of help you’ll get towards your rent, no matter what the cost of your rent actually is.

It’s usually just enough to cover the cost of a room in a shared house. Even if you’re not sharing with others, the Shared Accommodation Rate is usually the only amount you can get.

Don’t worry if this all seems very confusing. You can book an appointment for our Benefits and Money Clinic to talk to our adviser who can go through this with you.

Can I get housing benefit if I have a disability?

If you’re living with a brain tumour (either high or low grade) it’s likely that, in the eyes of the law, you’re considered to have a disability, even if you don’t see yourself that way. As such, you may qualify for different levels of housing benefit.

Unlike the Shared Accommodation Rate, the one-bedroom self-contained rate will cover the full cost of renting a one-bedroom self-contained flat up to the local authority rent cap. This is the maximum amount of rent the local authority will pay for each type of property. 

You can claim the one-bed self-contained rate if you claim one of the following:

• daily living component of Personal Independence Payment (PIP)
• middle or high rate Disability Living Allowance (DLA)
• armed forces independence payment.

This doesn’t apply if someone claims Carer’s Allowance or the carer’s element of Universal Credit because they’re your full-time carer. This is because living on your own would mean they are no longer providing you with full-time care.

If you need overnight care, you may be eligible for the two-bed Local Housing Accommodation rate. 

To qualify you would need a paid or unpaid carer staying with you regularly to provide overnight care and be claiming the daily living component of PIP or middle or high-rate DLA. If this is the case, there must be a bedroom available for your carer when they stay.

If I work, can I get help to pay my rent?

We know that living with a brain tumour can affect not only the type of work you can do, but also how long you’re able to work. Some people find they are only able to go back to work part-time because of side-effects like fatigue. 

This can make moving out of your parents’ house seem impossible. But you may still be able to get support to pay your rent.

People on a low income may be entitled to claim a percentage of their rent by applying for housing benefit or the housing cost part of Universal Credit. You would need to submit proof of income such as wage slips. 

They will assess whether you qualify for financial assistance towards paying your rent based on how much you’re earning. If you’re unsure, you can speak to our benefits adviser by booking an online appointment to talk about your situation.

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Worried about losing your home?

We understand that the financial difficulties that often follows a brain tumour diagnosis can be extremely stressful. 

If you’re currently living in your own home and are struggling to pay your rent or mortgage, and are worried about losing your home, contact Shelter, who can give expert advice regarding your housing rights and getting emergency support.

They may be able to support you to stay in your home. They can work with your landlord to reach an agreement about any rent arrears. They’ll also be able to provide you with support around other housing options and finding alternative accommodation. 

What practical help is available, so I can manage living on my own?

As well as Home Help or floating support, there are other options available to enable you to live independently.

Adaptations

You may be worried about living on your own and think you won’t be able to manage, but there are things that can be done to make it safer and easier to move around and do everyday tasks.

If you’re having difficulties doing things around your home, such as getting up the stairs or getting in and out of the bath, you can get a free home assessment through your local council. They’ll look at what your needs are and what you’d need to be able to live independently.

This can include larger things, such as getting a stair lift or a walk-in shower, or little things, such as getting a security light fitted outside your house or having hand rails installed. They can also recommend household equipment and gadgets that might make life a little easier. 

How do I get a home assessment?

If you think you, or someone you know, needs help with everyday tasks, or you’re worried about your safety due to your health, you can request an assessment yourself. It doesn’t have to be done by a professional.

To request a home assessment, call your local council’s adult social care team. Or you may be able to do this online, as most local councils have an online form you can complete.

What happens during the assessment?

An occupational therapist (OT) will come to your home and ask you questions about your health and the things you find difficult. They’ll also walk around the house with you, to see what you struggle with. A home assessment usually takes about an hour.

The assessment is something you do with the occupational therapist, rather than them doing it. So it’s really important for you to be honest and tell them every single thing that you find difficult, no matter how small it may seem.

It’s a good idea to have someone with you during the assessment, particularly if you struggle with memory issues. They can remember things that you might forget. Or they can prompt you to tell the OT exactly how much you struggle with things, if you don’t feel confident in telling them.

Having someone with you also means they can take notes for you and remind you of what’s been discussed if you’re likely to forget.

The OT might also refer you for a needs assessment if they feel you could benefit from extra help at home, in addition to the adaptations.

Can I get help to cover the cost of home adaptations?

Some adaptations may be free, but local authorities should cover the cost of each adaptation that costs less than £1,000, if this has been assessed as something you need. Examples include a grab rail, a ramp or security lighting. For things not covered, such as getting a wet room or having doors widened, you may be eligible for a Disabled Facilities Grant or Independence at Home Grant.

You can also see if there’s a Home Improvement Agency (HIA) in your area that can help you find schemes to support with the cost of adaptations. Websites like Turn2us and the Money Advice Survey may have more information about grants you may be eligible for. 

As you can see, there are various options when it comes to living independently. It’s important to be honest about your level of need and to ask for help if you need it.

If you have any questions about this or need any other support, you can contact the Young Adults Service by emailing YAS@thebraintumourcharity.org