Independent living after a brain tumour diagnosis
There is support available to help anyone with independent living after a brain tumour diagnosis.
We know that receiving a brain tumour diagnosis can be devastating and that regaining independent living after a diagnosis can be difficult.
So we’ve put together some information that helps with independent living, from the different types of support available, to housing options, including adjustments.
Types of housing are available for independent living
For young people, having a brain tumour means that they’ve never lived independently before. It’s natural that you may start to think about independent living.
The most common independent living options include:
You’ll learn more about these options below.
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Supported (or Sheltered Housing) accommodation
This is rented housing with support from a support worker or care worker. This can be long-term or short-term. This could be an option if you’d find it difficult managing your own home due to difficulties with eh brain tumour.
The most common supported accommodation is support at home, this involves:
- Personal care: To help you with personal hygiene such as washing, dressing and shaving.
- Home help: To support you with chores such as vacuuming, making beds, washing, shopping and cooking
- Floating support: To assist with things like budgeting, tenancy, benefits, support, education or training.
Group homes or short-stay supported housing are other examples of supported accommodation. Staff are available on site, with support based on your individual needs. Some are even available 24/7, while others are available from 9.00am–5.00pm, Monday to Friday.
Choices can vary, you may have a self-contained flat within a small group with office-based staff in the same building. You may also have a communal kitchen and living room, but your own ensuite room.
How to apply
In some cases, you can apply directly. But, for others, you need to be referred by your local authority adult social care team. You can refer yourself to this care team, or someone you know can refer you.
The social care team will do a needs assessment to establish your needs. If they agree you fit the criteria, they’ll discuss any financial costs and what they will contribute. Then social care will cover this cost, but it’s important to check. And then the referral is complete.
If you directly apply to a social housing project or for floating support, you may help with some 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 this 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 the most searched because the rent is often cheaper than private accommodation. It’s also more stable too, once you’ve passed your introductory tenancy. After this, your local authority will offer you a secure tenancy, which makes it difficult for the landlord to end your tenancy without a justified reason.
How to apply
To apply for this, you’ll need to share details about your current circumstances e.g. current living arrangement, why you need social housing, income and details of anyone else who’ll be living with you. You’ll also need to complete a medical assessment form.
Then, your local authority will assess your application using a point scoring system and they will place it in a band based on the level of need. Some local authorities will give you a band number or band letter. Your band number or letter will give you an idea of your priority level. You’ll then receive 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 it can take years of bidding to be successful.
Privately rented property
This is property owned by a person for the purpose of renting.
These are often expensive. According to the National Housing Federation, one in every five households in England will have to spend over a third of their income on housing by 2030. And, according to Crisis’ report on housing affordability, only 2.7% of houses in Great Britain are affordable for people on housing benefit.
Landlords also want large deposits and at least one month’s rent in advance. Some agents and landlords also charge administration fees of several hundreds of pounds. So you should always ask for hidden fees.
Renting from a private owner or agency acting on their behalf can be unstable. Tenancies are short-term and landlords can decide not to renew the tenancy after the 6 month initial tenancy has expired.
They can also ask you to vacate at any time without reason after the initial tenancy period has ended and they will give just four weeks’ notice to move out.
How to find privately rented housing
To find privately rented properties, look online through places like Rightmove or Zoopla, or look in local newspapers. If you’re claiming benefits you can ask your local council, as they keep a list of landlords that accept tenants claiming benefits.
Will I be able to afford independent living, if I don’t work or am on a low income?
There is support available, and although people who are under 35 only have limited financial support, there are options. If you’re under 35, on a low income or unable to work and claiming benefits, you are eligible for 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 paid to landlords to cover the rent for people who are on benefits or a low income. The size of the property and the age of the person determines this. The Shared Accommodation Rate is set according to the Local Housing Allowance rules. It sets the maximum amount of help you’ll get towards your rent.
It’s enough to cover the cost of one room in a shared house. Even if you’re not sharing, the Shared Accommodation Rate is usually the only amount you can get.
Don’t worry if this seem confusing. You can book an appointment for our Benefits and Money Clinic to talk to an 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, the law considers you to have a disability, even if you don’t see yourself that way. 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. This is the maximum amount of rent the local authority will pay.
You can claim this if you have one of the following:
- Personal Independence Payment (PIP)
- Middle or High rate Disability Living Allowance (DLA)
- Armed forces independence payment.
This doesn’t apply to someone with Carer’s Allowance because independent living means carers are no longer providing you full-time care.
If you need overnight care, you are eligible for a two-bed Local Housing Accommodation rate.
To qualify you would need a carer staying with you to provide overnight care and be claiming the PIP or DLA. A bedroom will be available for your carer.
If I work, can I get help to pay rent?
Living with a brain tumour can not only affect the type of work you do, but also how long you work. Some people find they are only able to work part-time because of side-effects like fatigue.
This can make moving out seem impossible. But you can still get support to pay rent.
People on a low income can claim a percentage of their rent by applying for housing benefits. You would need to submit proof of income such as wage slips.
They will assess whether you qualify for financial assistance based on your earning. If you’re unsure, you can speak to our benefits adviser:
Expert benefits & money advice
Last year our Benefits and Money Clinic helped 178 members of our community claim over £450,000!
Worried about losing your home?
We understand that financial difficulties can be extremely stressful. If you’re currently living independently and are struggling to pay rent or mortgage, contact Shelter, they can give expert advice on housing rights and emergency support.
They will support you to stay at home. They can work with your landlord to reach an agreement concerning rent. They’ll also provide you with support around other housing options.
What practical help is available to manage independent living?
As well as Home Help or floating support, there are other options available to enable independent living.
Adaptations
You may be worrying about independent living, but there are things that you can do to make it safer and easier.
If you’re having difficulties doing things at home, such as climbing the stairs or getting in and out of the bath, you can get a home assessment through your local council. They’ll look at your needs for independent living.
This can include having a stair lift or a walk-in shower, or a security light outside or hand rails, which your local authority will be hiring some contractors to install for you. They can also recommend household equipment and gadgets.
How do I get a home assessment?
If you need help with everyday tasks, or the tasks that make you worried about your safety due to your health, you can request an assessment yourself.
To request a home assessment, call your local council’s adult social care team. Or you can do this online.
What happens during the assessment?
An occupational therapist (OT) will come to your home and ask questions. They’ll also walk around the house with you, to see what you struggle with.
The assessment is something you do with the OT. So it’s really important for you to tell them every single thing that you find difficult.
It’s a good idea to have someone with you during the assessment, particularly if you struggle with memory issues.
The OT might refer you for a needs assessment, in addition to the adaptations.
Can I get help to cover the cost of home adaptations?
Some adaptations are free, but local authorities should cover the cost of each adaptation less than £1,000. For things not covered, 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) that can find schemes to support the cost of adaptations. Websites like Turn2us and Money Advice Survey may have more information.
As you can see, there are various options when it comes to independent living. It’s important to be honest about your needs and to ask for help.
If you have any questions, you can contact the Young Adults Service by email: YAS@thebraintumourcharity.org
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