This is a short summary of the benefits available for young people and adults with mitochondrial disease.
It is true to say that many medical assessors and decision makers have little or no understanding of the various mitochondrial diseases. For that reason we would suggest that you get advice when filling in any form that requires a medical assessment. We would also recommend that you include medical evidence when submitting claims.
Personal Independence Payment (PIP)
Personal Independence Payment (PIP) is a benefit for people who are between 16 and 64 years old who due to an illness or disability have additional care needs. This is a non means tested benefit and therefore income and capital is ignored. There are 2 parts to this benefit, the daily living component and the mobility component. This benefit could increase your income anywhere between £22.65 and £145.35 a week. Claiming this benefit can lead to entitlement or increased entitlement to other means tested benefits.
Attendance Allowance is for people who are over 65 who are either physically or mentally disabled and require either assistance or supervision with their personal care needs or require supervision or support to ensure that they are safe.
It is available to people who live on their own or with others and is not dependent on whether the assistance required is being given. It is a non means tested benefit and therefore income and capital is ignored.
If you are in receipt of this benefit it can lead to entitlement or increased entitlement to means tested benefits. This benefit could increase you income by either £57.30 a week if you have either day time or night time needs, or £85.60 a day if you have both and can lead to entitlement or increased entitlement to some means tested benefits.
Carer's Allowance is available for people who provide care of more than 35 hours a week to someone who has an illness or disability. The person that you care for has to be in receipt of Attendance Allowance, the middle or higher rate of the care component for Disability Living Allowance or the Daily Living element of Personal Independence Payment. The person claiming Carer's Allowance is not able to earn more the £120 per week and the benefit is paid at £64.60 a week.
Employment and Support Allowance (ESA)
Employment and Support Allowance (ESA) is a benefit for people who have limited capability for work due to an illness or disability and are not in receipt of Statuary Sick Pay. You must be over 16 years old and under State Pension age. Similar to Jobseeker's Allowance there is Income Related ESA which is means tested and Contribution Based ESA which is non means tested and dependent on your National Insurance Contributions.
Housing Benefit is available to assist with rental costs for people who are on a low income. You can be employed or unemployed. This benefit is means tested and takes into consideration income and capital.
Council Tax Support/Reduction
Council Tax Support is administered by your local Council and designed to assist people with their Council Tax bill if they are on a low income. You can be employed or unemployed. This benefit can vary depending on where you live. It is means tested and takes into consideration your income and capital. It is available to people who live in rental properties and to home owners.
Council tax discounts or reductions
Council tax discounts are not means tested but depend on a number of different factors.
Single person discount – 25% if you live in a property by yourself.
Disabled band reduction – Council tax banding reduced by one band. You may be eligible for the scheme if you live in a larger property than you would need if you or another occupant weren’t disabled. **You’ll have to show that you’ve either an extra bathroom, kitchen or other room that you need for the disabled person or extra space inside the property for using a wheelchair
Severe mental impairment - You, or somebody who lives with you, might be entitled to a discount (or exemption) if you are classed as severely mentally impaired.
There are two types of Tax Credits, Working Tax Credit and Child Tax Credit.
Working Tax Credit
Working Tax Credit is a benefit that is available to people who work and are on a low income. Eligibility takes into consideration how many hours of paid work you do, if you have a disability, if you have children and any childcare costs that are provided by approved childcare services.
Child Tax Credit
Child Tax Credit is a benefit to assist with the costs of bringing up a child. You need to be responsible for a child and in receipt of a low income. You do not need to be working to eligible. Eligibility takes into consideration your work, how many children you have, when they were born and if they have a disability.
Universal Credit is fairly new benefit and is slowly being introduced across the country. Whether you are entitled to this benefit currently depends on where you live and your circumstances. It is a means tested benefit for people of working age who are on a low income. This benefit is for people under State Pension age and if you are in a Universal Credit area it will replace Income Related Employment and Support Allowance, Income Based Jobseeker's Allowance, Child Tax Credit, Working Tax Credit and Income Support.
Pension Credit is a means tested benefit for people who are on a low income who have reached Pension Credit age. This benefit tops up your weekly income to £163.00 a week if you are single and £248.80 a week for a couple. Claiming this benefit can also lead to entitlement or increased entitlement to other means tested benefits.
The CEA card -The Cinema Exhibitors Association Card- can be used to allow a carer to get in free to a cinema when accompanying a person who is in receipt of a qualifying disability benefit.
When visiting any entertainment venue it’s worth asking if they have a carers scheme.
Just can’t wait card
This is a card you can carry to help you access toilets where there are no public toilets available. You can get a paper copy or download an app.
If you are no longer able to work because of health problems it’s worth while seeing if you can access your private pension early. This can be done if you are unlikely to be able to work fulltime again.
Check your insurance policies to see if you have any critical insurance cover – this includes mortgage protection cover.