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Access benefits and financial aid

The most common benefits and financial aid available to people affected by TSC

The impact of living with TSC can often impact not only health and emotions but also the financial security of individuals and families.

Many people in the TSC community could be entitled to different benefits. However, the steps to find out if you are eligible for a benefit and then applying for it can be complex.

To help you navigate the often confusing and bewildering world of accessing benefits, we have provided an overview here of what benefits you might be entitled to.

Need help completing difficult benefits forms or want to talk to someone about the benefits you might be entitled to? Contact our support team, who will be happy to help

Finding out what benefits and financial aid you might be eligible for

The advice in this page is not exhaustive or definitive. You may be entitled to benefits or financial aid that is not listed here.

For help with knowing exactly what you could be eligible to receive, contact our support team – you can find their details here.

Another great first step to find out what benefits you might be entitled to is to fill out an online benefits calculator, like the one by Turn2Us (link).

Access the TSA support fund grant

The TSA’s support fund grant can offer a lifeline to individuals and families affected by TSC when the financial implications of the condition become too much to carry.

The TSA support fund grant is not limited to a specific area and is there for those in need of financial assistance for a range of issues.

Some of the things that the TSA support fund grant can help with include:

  • Adaptions to a home, such as wheelchair accessibility
  • Household items, such as a washing machine
  • A holiday or days out
  • Travel costs to attend a TSA event

There are some things that the TSA support fund is not applicable for:

  • Where a statutory authority has a responsibility to pay for the item needed
  • Something you’ve already paid for, booked or ordered
  • Any ongoing or long-term costs, including living costs and bills
  • Costs associated with debt

You can apply if you:

  • Have TSC or are the parent or carer of an adult or child who has TSC
  • Live in England, Northern Ireland, Scotland or Wales
  • Have evidence (via photocopy) of your entitlement to one of the following:
    • Child Tax Credit
    • Working Tax Credit
    • Income based Job Seekers Allowance
    • Income Support
    • Employment and Support Allowance
    • Housing Benefit
    • Pension Credit

If you do not receive any of the above benefits, further information may be needed to complete your application.

Grant applications to the TSA support fund can be for up to a maximum of £250. The amount awarded will vary depending on the individual circumstances and needs of every claim.

If your application is successful, you must wait at least 12 months before submitting another application. This is to make sure that we can help as many people as possible.

If your application is successful, you will need to spend the money within six months and we will need proof of purchase. Any successful applicants will be responsible for any ongoing or additional costs incurred from the item that they purchase the support fund with.

To apply for the TSA support fund:

  • Complete the application form and accompanying monitoring form
  • Make sure that you have given us details of any benefits you receive
  • Make sure that you have given us a quote for the item(s) you want to purchase.

Once complete, send your application form to us via the TSA support team or post it to: TSA Support Fund, TSA, Unit 56, 1 Emma Street, London E2 9FP.

The TSA will contact you within three weeks of receipt of your application. As part of the review of your application, the TSA might request a reference from someone within health/social care or education.

We aim to notify you of the outcome of your application within six weeks of receipt.

If your application hasn’t been successful, we will let you know the reasons why and you will be able to make another submission should you choose to do so.

There are no application deadlines and the TSA support fund is available all year around.

Disability benefits

There are a range of different benefits potentially available to you if you live with a disability. Here, we have outlined some of the most common.

The main benefit for disabled children under the age of 16. DLA is divided into two parts: care and mobility. Your child may get one or both of these components, depending on their circumstances. DLA is not means tested.

The main benefit for disabled adults aged under 65. If successful, PIP can be a passport to other benefits or financial help. PIP is not means tested.

To claim PIP, you must have difficulties with daily living and/or getting around. PIP has replaced the old Disability Living Allowance (DLA) for adults. Adults receiving DLA are being gradually asked to claim PIP instead.

PIP is divided into two parts: daily living and mobility, with each paid at either standard or enhanced rates. The amount you receive depends on how your condition affects you, not the condition itself.

You might need to attend a face-to-face interview with an independent health professional as part of the claim process.

For people aged 65 or over who need help with personal care or keeping safe. AA is not means tested.

There are two rates of AA. The lower rate is paid if care is required during the day or night. The higher rate is paid if care is required day and night.

There is no financial help with AA for mobility difficulties. To claim AA, you must not be receiving DLA for adults or PIP.

Carer benefits

Are you a full-time or part-time carer for someone living with TSC? You could be entitled to benefits.

For people aged 16 and over who regularly spend at least 35 hours a week, including weekends, caring for someone. You do not have to be related or live with the person that you care for.

Carer’s Allowance can affect other benefits that you or the person you care for receives. It is important to get advice before you apply.

If more than one person provides care, only one of them can apply for Carer’s Allowance. You do not get paid extra if you care for more than one person.

Carers in Scotland who receive Carer’s Allowance might also receive a Carer’s Allowance Supplement. This is an extra payment, paid twice a year.

Helps with gaps in your National Insurance record, if you are caring for someone for at least 20 hours a week but do not qualify for Carer’s Allowance. This means that you can take on caring responsibilities without it affecting your ability to qualify for the State Pension.

Working age benefits

If you are older than 16 years of age but too young to receive the state pension, you might be eligible for working age benefits depending on your circumstances.

For people who are on a low income or currently out of work, to help with living costs. If you currently receive certain benefits you cannot claim UC at the same time.

Whether you can claim UC depends on where you live and on your circumstances.

If you cannot claim UC due to your situation, you might be able to claim Income Support to help with basic living costs.

Financial support if you are unable to work, or need help to find work, due to illness or disability.

Your claim will involve several stages and a Work Capability Assessment to assess your ability to work.

There are three types of ESA. Which ESA you might be eligible for depends on the area in which you live and your personal circumstances.

Benefits to help with household costs and bills

For people affected by TSC, the day-to-day costs of household upkeep and bills can soon become difficult to meet. There are benefits available that might be able to help.

Help to pay your rent if you are unemployed, on a low income or claiming benefits. It is being replaced by Universal Credit but may still be available under certain circumstances and in some areas of Northern Ireland.

Extra temporary payments from your local council to help with housing costs.

Your property or household circumstances may mean that you are eligible to receive a discount or an exemption. This includes:

  • Someone who has ‘severe mental impairment’ (this may include some people living with TSC) and is in receipt of certain benefits
  • Someone who is a carer

You might be eligible for a grant from your local council if you are disabled and need to make changes to your home because of your disability. This could include adapting a room, installing a stairlift, improving access or changing the lighting or heating system.

In Scotland, councils are required to give grants for repairs, improvements and adaptions that are essential to make the home accessible for a person with disabilities.

Other useful resources to find out more about benefits and financial aid include:

Government information

  • UK Government website (www.gov.uk)

Independent advice

  • Citizens Advice (www.citizensadvice.org / 0344 411 1444)
  • Advice NI (Northern Ireland only) (www.adviceni.net / 0808 802 0020

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