SarcoidosisUK - Disability Benefits and Financial Support

DISABILITY BENEFITS AND FINANCIAL SUPPORT

Living with sarcoidosis may well affect your financial situation. This page provides information on a range of benefits and sources of financial support that you may be entitled to. These benefits could help you to support yourself and your family, especially if working becomes a problem due to your sarcoidosis. Unfortunately SarcoidosisUK is not able to offer any personalised benefits support or a benefits advocacy service. Please use the links below for further support and information - they are the our most trusted sources of guidance.

Introduction

There are four key benefits to consider, outlined briefly below and then in more detail further down the page. It is important that you use the relevant websites and/or contact details at the end of each section for more detailed information and to find out how to apply. There are many useful resources to help people claiming benefits, you can find links to some of the best resources in the box to the right and at the bottom of this page.

Click to jump to:

Trusted Sources of Further Support and Information on Benefits.

Main Benefits Overviews

Personal Independence Payment (PIP) Overview

  • For people aged 16 – 64 to help them meet the extra costs of having a long-term health condition or disability.

  • Points system assesses how your condition affects your ability to cope with daily life and mobility.

  • If awarded, there is a daily living component and a mobility component. Each has two rates; standard and enhanced.

  • Not affected by income or savings, not taxable and you can get it whether in work or not.

  • Claiming Personal Independence Payment can guide you through the process of applying for PIP.

Employment and Support Allowance (ESA) Overview

  • Payable to people unable to work because of ill health or disability.

  • Requires a medical certificate (‘fit note’) from your GP to make a claim.

  • You will be required to fill out a medical questionnaire, attend a medical assessment and a work-focused interview

  • This is intended to determine your capability to work. It is possible to challenge the decision.

Attendance Allowance (AA) Overview

  • For people aged 65 and over who have a health condition which has lasted at least six months.

  • Entitlement is based on care needs resulting from how your health affects your everyday life.

  • Not affected by any income or savings you have; payable alongside any other benefits (except Disability Living Allowance or Personal Independence Payments). You do not have to have paid national insurance contributions.

  • Claiming Attendance Allowance can help you through the process of applying for (AA).

Disability Living Allowance for Children Overview

  • For children aged under 16 who have a health condition or a disability and need help with personal care/supervision or help with getting around outdoors because of this.

  • Designed to meet additional expenses of having a child with Crohn’s or Colitis (eg, higher heating bills, special diets, taxi fares, etc).

  • Claiming DLA - Children under 16 can help parents go through the process of applying for DLA.

  • Some adults may also still be getting DLA if they claimed before 10 June 2013 but will be invited to claim Personal Independence Payment (PIP). To find out when this will affect you, use the PIP checker: www.gov.uk/pip-checker

Navigating the Benefits System – 8 Top Tips

These 8 top tips should make the process of navigating the UK benefits system more manageable:
  1. The benefits system is complex and changes often. Check for up-to-date information: www.gov.uk/browse/benefits.

  2. Please remember that the people you will be dealing with are unlikely to know anything about sarcoidosis. You will need to educate them on your condition and provide evidence. Read the official information on sarcoidosis (e.g. the Department for Work and Pensions (DWP) document below) to the people you will be meeting.

  3. You may find useful the medical guidance for DWP staff who make decisions on adult cases for Disability Living Allowance (DLA) and for Attendance Allowance (AA): A-Z Adult Medical Conditions (Sarcoidosis is on pages 541-543.)

  4. Be prepared - have details of your condition, including diagnoses, in writing. You will need to be organised and make sure everything is evidenced. For example, if your case is severe, ask your consultant or GP to use the word 'severe' in a letter.

  5. Confirm all correspondence in writing or by email (and keep copies). If something has been said or agreed and it is not in writing it might as well not exist! If you are told something helpful on the phone or at a meeting/interview, then write to them to confirm it. It can be helpful to use bullet points. Be aware that anything you write may later be used to judge the validity of your claim.

  6. Especially if you feel too unwell or overwhelmed, ensure you seek support in while applying for benefits. This might be from a relative or friend, Social Services, your GP's surgery or your local Citizens Advice Bureau: www.citizensadvice.org.uk/

  7. Remember you are a citizen who has statutory rights. You did not want sarcoidosis, and are dealing with the consequences. Do not allow yourself to be intimidated or mismanaged by the system. Be polite with everyone, but know your rights.

  8. Some of the benefits included in this guide are means-tested, some are contributions-based. Means-tested benefits are based on your income or household income, including some selected benefits you may already claim. Your payment will reduce gradually as you earn more. Contribution-based benefits require a minimum amount of National Insurance contributions for you to qualify.

Main Benefits: Health, Disability and Mobility Related Support

Personal Independence Payment (PIP)

Personal Independence Payment (PIP) is a benefit designed to help eligible people meet some of the extra costs they may have because of a long-term health condition or disability.

PIP is non-means-tested and non-contributory, and can be paid whether you are working or not. Please remember that different rules can apply in different parts of the UK.

Eligibility summary:

  • Aged 16-64.

  • Long-term health condition or disability.

  • Had the health condition or disability for three months and be likely to continue to have them for the next nine months.

  • Have resided in UK for at least 2 of the last 3 years.

  • Currently a resident in the UK, Ireland, Isle of Man or the Channel Islands.

PIP has two components - Daily Living Activities and Mobility Activities. You can be paid for one or both components depending on your eligibility.

For each component, there are two rates, standard and enhanced. You will be assessed on a points system to decide which rate you qualify for. To qualify for the standard rate you need eight points, and for the enhanced rate you need 12 points.

To assess your eligibility you will have to undergo an assessment by an independent healthcare professional. For this assessment, it may be helpful to think about how you feel on your worst days. This can help the healthcare assessor decide how much support may be require more accurately.

If you’re awarded the enhanced rate of the mobility activities component, you may also be eligible to access the Motability Scheme or the Blue Badge Scheme (see below). You may be subject to further assessment for access to these schemes.

Only around 45% of PIP claims are successful. They provide information to help you understand why a claim has been rejected. Many negative decisions are reversed on appeal. If appealing, be sure to have copies of everything in writing and remember to request copies of all documents used by the DWP in making their decision. Carefully read what they have said, look at the documents they use in making their decision, and ensure that your appeal clearly states why you meet their requirements

If your appeal is rejected and you believe the decision to be unfair, you can complain to the Parliamentary and Health Service Ombudsman (see Additional Sources of Information).

More information and how to apply:

PIP Overview: www.gov.uk/pip/overview

Claiming PIP: www.gov.uk/pip/how-to-claim

PIP Guide to Claiming (Disability Rights UK): https://www.disabilityrightsuk.org/personal-independence-payment-pip

New claim telephone: 0800 917 2222

Ongoing claim telephone: 0345 850 3322

Text-phone: 0345 601 6677

Main Benefits: Health, Disability and Mobility Related Support

Disability Living Allowance (DLA)

IMPORTANT: Starting from April 2013, the DLA is being replaced by Personal Independence Payments (PIP). All new claimants must now apply for PIP.

  • For adults aged 16 to 64.

  • People who are already in receipt of DLA will be invited to apply for PIP. To find out more use the PIP checker. (www.gov.uk/pip-checker)

  • Some people who currently qualify for DLA will not quality for PIP, and some who do not qualify for DLA will be able to qualify for PIP

  • Please remember that different rules can apply in different parts of the UK.

Disability Living Allowance (DLA) for children

Sarcoidosis is rarely diagnosed in children but if you are caring for a child under 16 who satisfies the care or mobility criteria as a result of an illness or disability, you may be eligible to claim DLA. You’ll need to show your child has significantly more care needs than a child of the same age without any health problems.

DLA has two components: a Care Element and a Mobility Element. To qualify for the mobility component your child must be three or older.

More information and how to apply:

DLA Overview: www.gov.uk/disability-living-allowance-children

DLA Factsheet: www.disabilityrightsuk.org/disability-living-allowance-dla

Telephone: 0345 712 3456

Textphone: 0345 722 4433

Main Benefits: Health, Disability and Mobility Related Support

Employment and Support Allowance (ESA)

If you are 16-64 and unemployed or working under 16 hours a week, you may be eligible to claim Employment and Support Allowance (ESA). ESA is designed to provide financial support when you are looking for work or if you are unable to work as a result of your condition. ESA is means tested.

ESA’s financial support has two elements:

  • Contributory ESA which will depend on your National Insurance contributions.

  • Income-related ESA which is the means-tested element and depends on your income and savings.

When applying for ESA, you will have to attend a Work Capability Assessment to help determine you eligibility. During this assessment, you should think about how you can show the difficulties and limitations you would face if you had to work for an average week when your health condition is bad.

After this assessment, the Department for Work and Pensions will place you in either the:

Work-related activity group - you will be expected to try to find employment and have regular interviews with an adviser.

or the

Support group - you will not be expected to look for employment as your illness or disability has a severe effect on your ability to work.

If you are not eligible for ESA, you may be eligible to apply for Job-Seekers Allowance (JSA) or Universal Credit instead.

More information and how to apply:

ESA Overview: www.gov.uk/employment-support-allowance/overview

ESA Factsheet: www.disabilityrightsuk.org/employment-and-support-allowance-overview

Guide to making a claim (action for me): www.actionforme.org.uk/uploads/pdfs/esa-filling-in-the-form-factsheet.pdf

New claims:

Telephone: 0800 055 6688
Textphone: 0800 023 4888
Welsh language: 0800 012 1888

Existing claims:

Telephone:  0345 608 8545
Textphone: 0800 608 8551
Welsh language : 0800 600 318

Main Benefits: Health, Disability and Mobility Related Support

Attendance Allowance (AA)

Attendance Allowance is a non-means-tested and non-contributory benefit paid to people aged 65 and over who have personal care needs because of their health. You must have had care needs for at least six months to apply for Attendance Allowance.

It’s paid at two different rates and which rate you get depends on the level of care that you need because of your disability. The Allowance is designed to contribute towards your care needs where you live, not for needs or mobility support required outside the home.

Attendance Allowance (AA) is the equivalent of DLA/PIP for the over-65s.

  • For people aged 65 and over who have a health condition which has lasted at least six months.

  • Entitlement is based on care needs resulting from how your health affects your everyday life.

  • Not affected by any income or savings you have; payable alongside any other benefits (except Disability Living Allowance or Personal Independence Payments). You do not have to have paid national insurance contributions.

More information and how to apply:

AA Overview: www.gov.uk/attendance-allowance

AA Factsheet: www.disabilityrightsuk.org/attendance-allowance-aa

Telephone: 0345 605 6055

Textphone: 0345 604 5312

Main Benefits: Health, Disability and Mobility Related Support

Transport

The Blue Badge Scheme enables you to park in disabled parking bays and/or apply for a parking space where you live.

The Motability Scheme provides affordable leases for adapted cars and scooters.

Transport for London have introduced a badge to be worn on public transport saying "Please offer me a seat". This is designed for people who have less visible disabilities such as sarcoidosis.

More information and how to apply:

Blue Badge Overview: www.gov.uk/blue-badge-scheme-information-council

Blue Badge Apply: www.gov.uk/apply-blue-badge

Blue Badge Scheme Helpline: 0844 463 0215.

Motability Scheme Overview: www.motability.co.uk

Motability Scheme Telephone: 0300 456 4566

Motability Scheme Factsheet: www.disabilityrightsuk.org/motability-scheme

TfL Badge

Work Related Financial Support and Benefits

Statutory Sick Pay

If you are employed, Statutory Sick Pay (SSP) will be paid to you by your employer for up to 28 weeks when you are too ill to work.

Eligibility Summary:

  • Working for your employer under a contract of service.

  • Earning above the stated earnings threshold before tax and national insurance.

  • Have been sick for at least four days in a row.

You will need to contact your employer to find out their application procedure. Some employers will pay SSP automatically but others may require a letter to request it.

Once SSP ends, if you’re still too sick to return to work, you may be eligible for Employment and Support Allowance.

More information and how to apply:

Overview: www.gov.uk/statutory-sick-pay/overview

Work Related Financial Support and Benefits

Jobseeker’s Allowance (JSA)

You can apply for Jobseeker’s Allowance (JSA) to help you while you look for work. Your payments may be stopped if you stop looking for work without good reason. JSA is means-tested.

More information and how to apply:

Overview: www.gov.uk/statutory-sick-pay/overview

Factsheet: www.disabilityrightsuk.org/jobseekers-allowance-jsa

Telephone: 0800 055 66 88

Work Related Financial Support and Benefits

Universal Credit

Universal Credit is a new benefit which combines a range of benefits within one payment (including income-related benefits, disability benefits, carer benefits and Tax Credits). It is being introduced throughout the UK in stages so whether you can claim depends on where you live. The amount you’ll get depends on your circumstances and the areas of support that you are eligible for. It is paid monthly and you may be eligible whether you are working or not.

The areas of support within Universal Credit include housing, childcare, disabilities and caring for someone with a disability.

More information and how to apply:

Overview: www.gov.uk/universal-credit/overview

Factsheet: www.disabilityrightsuk.org/universal-credit-uc

Telephone: 0345 600 0723

Textphone: 0345 600 0743

Carer and Health Related Financial Support and Benefits

Carer’s Allowance

You may be able to claim Carer’s Allowance if you spend at least 35 hours a week caring for someone age over 16 with substantial caring needs and. You do not have to live with or be related to the person you care for.

The person you care for must already receive one of these benefits:

  • Personal independence Payment (PIP) daily living component

  • Disability Living Allowance (DLA) at the middle or highest care rate

  • Attendance Allowance (AA)

  • Constant Attendance Allowance at or above the normal maximum rate with an Industrial Injuries Disablement Benefit

  • Constant Attendance Allowance at the basic (full day) rate with a War Disablement Pension

  • Armed Forces Independence Payment

If you receive the State Pension, get specialist advice before you apply for Carer’s Allowance, as the two benefits can’t be paid at the same time.

Carer’s Allowance is non-contributory and non-means-tested. But any other means-tested benefits you do get will be reduced by the same amount you get from Carer’s Allowance.

More information and how to apply:

Overview: www.gov.uk/carers-allowance/overview

Telephone:  0845 6084321

Carer and Health Related Financial Support and Benefits

Carer’s Credit

If you don’t qualify for Carer’s Allowance, you may be eligible to get Carer’s Credit if you care for someone for at least 20 hours a week. You cannot claim if you’re already claiming Carer’s Allowance.

The person you’re looking after must get one of the following:

  • Disability Living Allowance (DLA) care component at the middle or highest rate

  • Attendance Allowance (AA)

  • Constant Attendance Allowance

  • Personal Independence Payment (PIP) daily living component, at the standard or enhanced rate

  • Armed Forces Independence Payment

Carer’s Credit is not means-tested so will not be affected by your income or savings. Carer’s Credit is a National Insurance credit so if you have to stop work due to your caring responsibilities, you National Insurance contributions will still be paid. This means you can take on caring responsibilities without affecting your ability to qualify for the state pension.

More information and how to apply:

Overview: www.gov.uk/carers-credit/overview

Telephone: 0345 608 4321

Textphone: 0345 604 5312

Carer and Health Related Financial Support and Benefits

Help with Prescription Costs (England Only)

If you live in England you may be eligible to apply for help with prescription costs. NHS prescription charges have been abolished in Scotland, Wales and Northern Ireland. In England people who are under 16, or under 19 and in full time education, or over 60 are automatically entitled to free prescriptions.

In England, there are three main ways to get free or reduced prescription costs:

  • Medical Exemption Certificate

  • Low Income Scheme

  • Prescription Prepayment Certificate (PPC).

A Medical Exemption Certificate may enable you to get free prescriptions if you:

  • are pregnant or have had a baby in the last 12 months

  • are a war pensioner being treated for your accepted disability

  • are being treated for TB, cancer, the effects of cancer or the effects of cancer treatment

  • have a specified physical disability that prevents you leaving home without the help of another person

The Low Income Scheme enables you to get free or reduced prescription costs. You may qualify for the Low Income Scheme if you have a low income and your capital is £16,000 or less. Your capital allowance rises to £23,250 if you are in a care home.

If you are eligible for the Low Income Scheme, you may also be eligible for support with other medical costs including dental costs, eye care costs, healthcare travel costs and wigs and fabric supports cost.

The Prescription Prepayment Certificate enables you to save money on prescription costs if you are not eligible for the Low Income Scheme or Medical Exemption certificate. Buying a Prescription Prepayment Certificate will save you money on prescription costs if you need four or more items in a three month period or if you need 12 or more items in a year.

More information and how to apply:

Overview: www.nhs.uk/NHSEngland/Healthcosts

General Queries and Low Income Scheme Telephone: 0300 330 1343

Medical Exemption and Prepayment Certificate Telephone: 0300 330 1341

Income & Tax Related Financial Support and Benefits

Income Support

Income support tops up your income if it falls below a certain level. This benefit is means tested and, if you have a partner, your partner’s working hours, income and savings will be considered. Income support is paid at different rates and the rate you will receive if you are eligible will vary depending on your age, whether you have children and whether you are single or in a couple.

To qualify, you must meet all the following criteria:

  • Between 16 and state pension age.

  • Pregnant or a carer or a lone parent with a child under five or, in some cases, unable to work because you’re sick or disabled.

  • Have no income or a low income and no more than £16,000 in savings.

  • Work less than 16 hours a week (your partner must work under 24 hours a week).

  • Live in England, Scotland or Wales (Northern Ireland has different rules, please visit the website for further information).

You will not be eligible to claim income support if you are claiming Jobseeker’s Allowance or Employment and Support Allowance.

More information and how to apply:

Overview: www.gov.uk/income-support/overview

Telephone: 0800 055 6688

Textphone: 0800 023 4888

Income & Tax Related Financial Support and Benefits

Tax Credits

Tax Credits are a means-tested payment to top up your income. There are two types of Tax Credits:

  • Child Tax Credit – payable to anyone who has any children, depending on household income. You do not need to be working to claim Child Tax Credit.

  • Working Tax Credit – payable to people in low-paid work. You must work at least 16 hours a week (30 hours for 25-59 year olds) to qualify. You may be eligible to apply whether you are employed or self-employed.

You cannot claim Tax Credits and Universal Credits at the same time as Tax Credits are covered within the Universal Credit payment.

More information and how to apply:

Overview: www.gov.uk/browse/benefits/tax-credits

Income & Tax Related Financial Support and Benefits

Pension Credit

Pension Credit is a means-tested benefit for people who have reached the qualifying age. The qualifying age is gradually increasing to 66 in line with the increase of state pension age.

It has two parts, and you may be entitled to one or both:

  • Guarantee Credit - this tops up your weekly income to reach minimum  guaranteed level.

  • Savings Credit – eligible claimants will have saved some money towards their retirement.

You can claim Pension Credit whether or not you still work.

More information and how to apply:

Overview: www.gov.uk/pension-credit/overview

Telephone: 0800 99 1234

Textphone: 0800 169 0133

Income & Tax Related Financial Support and Benefits

State Pension

The State Pension is a regular payment you can claim if you reach state pension age on or after April 2016. This benefit is contributions-based and you’ll usually need to have paid or been credited at least 10 years’ national insurance contributions to qualify. If you are not eligible for the State Pension as you haven’t made enough contributions, you may qualify for a ‘top up’ state pension through your spouse’s or civil partner’s National Insurance contributions.

You won’t receive the State Pension automatically when you reach the qualifying age you must apply to claim it. You should get a letter four months before you reach state pension age telling you what to do.

More information and how to apply:

Overview: www.gov.uk/state-pension/overview

Telephone: 0800 731 7898

Textphone: 0800 731 7339

Housing Related Financial Support and Benefits

Housing Benefit

If you rent and are on a low income, you may be able to get Housing Benefit. You can apply for Housing Benefit whether you are unemployed or working. How much you get is based on your income.

Your Housing Benefit could be reduced if you live in council or social housing and have a spare bedroom. The reduction is 14% of your housing benefit for one spare bedroom and 25% for two or more spare bedrooms.

More information and how to apply:

Overview: www.gov.uk/housing-benefit/overview

Telephone: 0800 99 1234

Textphone: 0800 169 0133

Housing Related Financial Support and Benefits

Council Tax Reduction

Council Tax Reduction is a means-tested benefit which helps you to pay your Council Tax. If you are eligible, your Council Tax bill could be reduced by up to 100%.

You could be eligible if you’re on a low income or claim benefits. You can apply if you own your home, rent, are unemployed or working.

What you get depends on:

  • Where you live - each council runs its own scheme.

  • Your circumstances (eg income, number of children, benefits, residency status).

  • Your household income - this includes savings, pensions and your partner’s income.

  • If your children live with you.

  • If other adults live with you.

More information and how to apply:

For more information and instructions on how to apply please contact your local council.

Housing Related Financial Support and Benefits

Winter Fuel Payments

A Winter Fuel payment is a tax-free payment of £100-£300 paid automatically every year between November and December to help you pay your heating costs. You must have been born on or before 5 May 1953 to be eligible for this payment.

If you have never received a Winter Fuel Payments, don’t receive any benefits or only receive Housing Benefit, Council Tax Reduction or Child Benefit, you will need to apply to receive the payment. If you have received a Winter Fuel Payment before or you receive any benefits or a State Pensions, you do not need to apply for Winter Fuel Payments as it will automatically be paid to you.

More information and how to apply:

Overview: www.gov.uk/winter-fuel-payment/overview

Telephone: 03459 15 15 15

Textphone: 0345 606 0285

Housing Related Financial Support and Benefits

Warm Home Discount Scheme

The Warm Home Discount Scheme is a one-off discount on your winter electricity bill paid directly to your provider. This scheme is run with electricity providers so you need to register your interest with your electricity provider. This discount will be taken off your winter electricity bill if you met the eligibility criteria on the qualifying date for that year’s discount.

To be eligible for this discount, on the qualifying date:

  • Your supplier must be part of the scheme.

  • Your name or your partner’s must be on the bill.

  • You must be receiving the guaranteed credit element of Pension Credit (even if you get Savings Credit as well).

If you don’t qualify for the Warm Home Discount, some electricity providers help to people on low incomes or means-tested benefits so check with your supplier to see if you’re eligible for any support and how to apply.

More information:

Overview: www.gov.uk/the-warm-home-discount-scheme/what-youll-get

Telephone: 0345 603 9439

Housing Related Financial Support and Benefits

Cold Weather Payments

Cold Weather Payments are automatically paid to eligible claimants when the average temperature in your area falls below a certain temperature for a period of seven days between 1 November and 31 March.

To be eligible for these payments you must be receiving one the following income-related benefits:

  • Income Support or Income-based Jobseeker’s Allowance because you are aged 60 or over.

  • Income Support or Income-based Employment and Support Allowance (ESA) and have a child under five or are responsible for a disabled child.

  • Income Support if you are long-term sick or disabled.

  • Pension Credit.

  • Universal Credit.

You don’t need to apply for a Cold Weather Payment as these will automatically be added to and paid with your normal benefits payments.

More information:

Overview: www.gov.uk/cold-weather-payment/overview

Additional Sources of Information

Your local Citizens Advice Bureau may be a good source of information and help. You can visit your local Citizens Advice Bureau (CAB) in person for advice. To find your local CAB please visit the website or call the Phone Service for your area.

Alternatively, social services or your GP can direct you to experts. Online, Disability Rights UK and the Benefits and Work websites have independent and high quality information on many aspects of benefits. You may also want to look at the Government's Benefits calculator. Don't forget to explore SarcoidosisUK's support network where you can share your experiences with others.

Unfortunately, SarcoidosisUK is unable to provide financial support to individuals, nor can we offer personal advice on benefits. We are a small charity and unfortunately don't have the resources at this time.

Citizens Advice Bureau

Website: www.citizensadvice.org.uk/benefits

National Phone Service (England): 03444 111 444

National Phone Service (Wales): 03444 77 20 20

National Phone Service (TextRelay): 03444 111 445

NHS Care and Support Guide

Website: www.nhs.uk/Conditions/social-care-and-support-guide

UK Government

Website: www.gov.uk/browse/benefits

Benefits calculator: www.gov.uk/benefits-calculators

Parliamentary and Health Service Ombudsmanwww.ombudsman.org.uk/

Online resources

Disability Rights UK: www.disabilityrightsuk.org/how-we-can-help/benefits-information-disabled-people-and-advice-workers

Disability Rights UK Information Factsheets: www.disabilityrightsuk.org/how-we-can-help/benefits-information/factsheets/factsheets-alphabetical-order

Benefits and Work: www.benefitsandwork.co.uk/

ESA DLA/PIP Information and Support Facebook Page (unassociated with SarcoidosisUK)

SarcoidosisUK

SarcoidosisUK Support Services: www.sarcoidosisUK.com/support