Help with disability benefits

Could you be entitled to disability benefits? 

We want to ensure that families and carers of people with mitochondrial disease don't miss out on benefits and financial support they could be entitled to. The welfare benefits system is complex and always changing, so it can be difficult to negotiate. Here we have provided some links to useful websites that explain more about the disability benefits and entitlements your child might qualify for, and how to claim them.

Disability Living Allowance (DLA)

Disability Living Allowance is a regular payment to help with the extra costs of daily living or mobility because your child has a long-term health condition or disability. It isn’t means-tested.

This means you might be able to claim the benefit for your child regardless of your income or how much you have in savings.

Who is it for?

  • Children aged from three months to 16 who need extra help with daily living tasks, or
  • Children aged from three years to 16 who need help with mobility (getting about).

How much is it?

You could get between £22.00 and £141.10 a week, depending on the needs of your child.

How to claim?

Claim online on the GOV.UK website

Find out more at GOV.UK – Disability Living Allowance.

Personal Independence Payment (PIP)

Personal Independence Payment (PIP) has replaced DLA for people aged 16 to 64.

It is a payment that helps with the extra costs of being disabled or having a long-term health condition.

It isn’t means-tested or taxable and it is paid on top of other benefits. If you get it, you may get extra money on income related benefits.

This means you might be able to claim the benefit for your child when they turn 16, regardless of your income or how much you have in savings.

Who is it for?

  • People aged 16 to 64 who need help with daily living tasks or mobility (getting around).

If your child is aged 16 or over and you’re making a new claim for help with the extra costs of disability, you’ll need to claim PIP.

If your child is already getting DLA, you will be invited to make a new claim for PIP when they reach age16.

How much is it?

You could get between £22.00 and £141.10 a week, depending on the needs of your child.

How to claim?

Call the PIP claim line on 0800 917 2222 or Textphone on 0800 917 7777.

You’ll need to provide information such as your NI number, GP details and bank details. You’ll then be sent a claim pack to complete.

Find out more at GOV.UK – Personal Independence Payment.

More information about PIP in Northern Ireland: nidirect website.

Housing Benefit

Who is it for?

  • A household paying rent. More of your rent might be covered if a child in your household has a disability or long-term health condition.

Housing Benefit is gradually being replaced with Universal Credit.

How to claim?

Contact your local Jobcentre Plus/Jobs and Benefits Office or local council office.

Find out more at GOV.UK – Housing Benefit.

Help with Council Tax

Who is it for?

  • The person responsible for paying Council Tax. More of your bill might be covered if a child in your household has a disability or long-term health condition.

Council Tax Benefit has now been replaced by Council Tax Reduction schemes run by local councils in England, Wales and Scotland.

You can find out more on your local council website.

How to claim?

In England contact your local council to apply for their Council Tax Reduction scheme.

In Scotland contact your local authority to find out about their Council Tax Reduction scheme.

In Wales contact your local authority to find out about their Council Tax Reduction scheme.

Cold Weather Payment

Who is it for?

You might be able to get a Cold Weather payment to help with home heating costs if your child has a long-term health condition or disability and you’re getting one of these benefits:

  • Income Support
  • Income-based Jobseeker’s Allowance
  • Income-related Employment and Support Allowance.

How to claim?

You don’t need to apply. If you’re eligible to get a Cold Weather Payment, you’ll be paid it automatically.

Find out more at GOV.UK – Cold Weather Payment.

Child Tax Credit if your child has a disability

Who is it for?

  • Anyone with responsibility for a child who normally lives with them. How much you get will depend on your household income.

If your child has a disability or long-term health condition, you might able to claim an additional disabled premium for them.

Child Tax Credit will be gradually replaced with Universal Credit.

Changes to Child Tax Credit and Universal Credit

From April 2017, there are changes to who can get Child Tax Credits and Universal Credit, limiting support to the first two children.

However, all disabled children are protected.

So if you make a new claim after this date, you’ll still be able to get the disabled premium for any of your children who are disabled.

If you already have more than two children and are getting Child Tax Credits or Universal Credit, you won’t be affected by the changes.

For more information, use the tax credits calculator on the HM Revenue & Customs website to find out if you qualify and get a rough idea of how much you could be entitled to.

How to claim?

Call the Tax Credit Helpline on 0345 300 3900.

Help with getting about – Motability and Blue Badge Schemes

Motability Scheme

Who is it for?

  • People getting the higher rate mobility element of Disability Living Allowance or Personal Independence Payment – the scheme can provide a car, motorised wheelchair or scooter.

How to claim?

Call Motability on 0300 456 4566.

Find out more on the Motability website.

Blue Badge Scheme

Who is it for?

  • Those with severe mobility problems who have difficulty using public transport to park close to where they need to go. Charges and entitlement rules for the Blue Badge scheme vary across the UK.

How to claim?

Apply online on the GOV.UK website or contact your local council.

For out more at GOV.UK – Blue Badge Scheme.

Benefits if you’re a carer

Income Support

Who is it for?

  • Parents who can’t work because they are caring for a disabled child.

Income Support will be gradually replaced by Universal Credit.

How to claim?

Contact your local Jobcentre Plus or Jobs and Benefits Office.

Find out more at GOV.UK – Income Support.

Carer’s Allowance

Who is it for?

  • If you’re spending at least 35 hours a week caring for a child who gets the middle or higher rate care component of Disability Living Allowance.

How to claim?

Contact your local Jobcentre Plus or Jobs and Benefits Office.

Find out more at GOV.UK – Carer’s Allowance

A young carer is someone aged 18 or under who helps look after a relative who has a condition, such as a disability.

For more information: Young carers rights

Other Information

Educational Health and Care Plan (EHCP)

An Education, Health and Care (EHC) plan is for children and young people aged up to 25 who need more support than is normally provided in mainstream education. The EHCP is drawn up by the local authority after an assessment.

For more information: EHC Plans

Transition Planning

Between the ages of 16 and 18, children with long-term health conditions will begin a ‘transition’ from child health and social care services to adult services. Planning for this transition should begin when the child is 13 or 14 years old (Year 9 at school).

For more information: Transition planning

Respite Access

In certain situations, respite (temporary) care may be provided by your local authority. Your local authority or local carer’s centre can give you information about local support.

For more information: Respite care

Hospice Care

Children’s hospice care helps and supports children, young people and their families from the time of diagnosis. Hospice care is free for everyone and is often provided by charitable hospices.

For more information: Hospice care and Children hospice services

Help with Travel Costs for Hospital Visits

If you are referred to hospital by your doctor, you may be able to claim a refund of reasonable travel costs under the Healthcare Travel Costs Scheme (HTCS).

For more information: Travel costs

Riding for the Disabled Association (RDA)

RDA uses horses to deliver therapy, achievement and fun to children and adults with disabilities. There are nearly 500 Groups across the UK offering a wide range of different activities.

For more information: RDA

Disability and Swimming Lessons

All children should have the opportunity to learn to swim. Different pools have different policies and so it is recommended that you contact your local pool before booking lessons.

For more information: Swimming lessons

Help with claiming disability benefits for your child

More than £16 billion in means-tested benefits and tax credits currently goes unclaimed every year. Even if you’re not sure, make a claim – you might be surprised what you could get.

Source: Citizens Advice

Disability benefits are there to help you.

However, working out if your child is eligible and filling in the forms can be really complicated.

If you’re claiming DLA or PIP for your child, they’ll usually need to be medically assessed as part of the claim process.

To get free expert help and advice, call these helplines to speak to an adviser.

While the disability benefit system is being reformed, it is particularly important to know where to get specialist help if you need it.

  • Disability Benefits Helpline: 03457 123 456
  • Contact a Family Helpline: 0808 808 3555
  • Enter your postcode on the Citizens Advice website to find your local bureau.

Contact

We also have close links with the Welfare Benefits Adviser at the specialist Mitochondrial Disease Clinic in Newcastle, so if you have any additional questions, please contact [email protected] for more information.