Other Benefits

There can be many expenses involved when you are looking after a child with a single ventricle heart condition, for example with feeding, warm clothes for winter and frequent hospital trips and appointments.

We hope that this information will help to point you in the right direction of some of the sources of funding which may be available to help families. We can’t guarantee that you’ll be eligible for everything listed here, so please contact the relevant organisation directly to explain your circumstances and make sure it is worth your while to apply, and to make sure the information we have given is still correct as many of these things change frequently.

The majority of the information here refers to England, Wales, Scotland and Northern Ireland. In the instances where we are aware of a different situation, we have tried to make this clear.

When your child reaches the age of 16, they are entitled to claim certain benefits in their own name. However, it is very important that you seek proper advice about whether they should get benefits in their own right, or whether you will be better off as a family if you continue to claim on their behalf if they are still in full-time education.

If you would like to discuss benefits and entitlements in general, you can contact Little Hearts Matter, your congenital cardiac specialist nurse or hospital social worker. Other general sources of information are your local Citizens Advice, social services, your child’s community nurse, a specialist health visitor or the nurses and health care assistants on hospital wards. It can be worth chatting to these people to find out whether they have any ideas or experience.

This information is correct to the best of our knowledge at the time of going to press, but is not a guarantee of an individual family’s eligibility for funding. To check your eligibility, please contact the organisations directly.


General Living

Use the tool on the government website to help work out what you can claim – www.gov.uk/benefits-calculators.

Disability Living Allowance (DLA)

  • DLA consists of two components – personal care and mobility. The application form is extremely long and needs to demonstrate that your baby’s or child’s needs are over and above those of a child of that age without the condition.
  • Always keep two copies of your application.
  • Awarded at different levels depending on care needed during the day and night.
  • Phone to request a form even if you then go on to complete an electronic version, as your request date is the earliest the claim can be backdated to.
  • It is paid every four weeks.
  • Use a computer if you can to save time on future applications.
  • The mobility component application form is also long and time consuming. There are two different levels of financial support available, depending on your child’s mobility needs. Applications can only be made for children over the age of three. The higher rate is the only possibility from age three to five. From the age of five, two rates are available.

Main criteria

Personal care – if baby or child needs more care than a non-disabled child of their age. Can be claimed from age birth upwards.

Mobility – if a child is unable or virtually unable to walk from age three. If your child needs guidance or supervision when walking out of doors from age five.

How to claim

Disability Living Allowance Helpline: 0800 121 4600

Northern Ireland DLA: 0800 587 0912


LHM has an information pack to help with claiming DLA, either call the office on 0121 455 8982 or visit the Disability Living Allowance section of the website.

Carer’s Allowance

A person who is looking after a disabled person for at least 35 hours a week may be able to get Carer’s Allowance and claim income-related benefits.

Main criteria

  • DLA personal care component for person you look after at middle or highest rate, or PIP daily living component.
  • Earning below £123 per week after certain deductions have been made (rate correct in June 2019).
  • Can be claimed from birth upwards.

How to claim

Carers Allowance unit: 0800 731 0297


If you live in Northern Ireland

Tel: 0800 587 0912


Extra Child Tax Credit (CTC)

An extra amount is added to your CTC calculation for each child who is on DLA or PIP. If your child gets the highest rate of DLA care component or PIP enhanced daily living component, a further amount is added. You need to tell HM Revenue and Customs that you receive DLA or PIP for your child, and the level of the DLA or PIP – they do not automatically know. It is based on your joint annual taxable income.

Contact, a charity for families with disabled children employ welfare rights specialists who can advise on claiming tax credits. Helpline tel: 0808 808 3555.

Main criteria

  • Must receive DLA or PIP. Can be claimed from birth upwards.

How to claim

Helpline: 0345 300 3900 (Mon – Fri – 8am – 8pm, Sat – 8am – 4pm)


Personal Independence Payment (PIP)

Personal Independence Payment (PIP) is a new benefit replacing Disability Living Allowance (DLA) for adults aged 16-64. DLA will continue as a separate benefit for children aged under 16 years. Initially PIP only applied to those making a new claim, but it is now also replacing existing DLA awards for some claimants.

  • PIP consists of two components – mobility and daily living.

Main criteria

  • New set of criteria for assessment, also face-to-face assessment.

How to claim

Enquiry line tel: 0800 121 4433

To make a claim tel: 0800 917 2222


If you live in Northern Ireland

Enquiry line tel: 0800 587 0932

To make a claim tel: 0800 012 1573


LHM has an information pack to help with claiming PIP either call the office on 0121 455 8982 or visit the Personal Independence Payment section of the website.

Income Support

Income Support is a means-tested benefit for families. You cannot make a new claim for Income Support unless the severe disability premium gateway applies to you.

Main criteria

  • Low income and savings below £16,000.

How to claim

You can claim by phone, online or by post sending a claim form to your local Jobcentre Plus.

Jobcentre Plus tel: 0800 169 0350


Universal Credit

This is monthly payment that is replacing new claims for Income Support, income-based Job Seekers Allowance, income-related Employment and Support Allowance (ESA), Housing Benefit, Child Tax Credit and Working Tax Credit.

If you have a child with a disability you will only be asked to claim Universal Credit if you make a new claim for any of the benefits listed above.

Existing claimants, who don’t make a new claim for a means-tested benefit will not be affected, even if you live in an area where the full Universal Credit service has been introduced, unless you have a change of circumstances which means you have to make a new claim for one of the benefits listed above. Existing claimants are expected to be moved onto Universal Credit between 2020 – 2023 in a process known as managed migration.

For a more detailed description of this benefit, visit Contact, a charity for families with disabled children. https://contact.org.uk/advice-and-support/benefits-financial-help/benefits-and-tax-credits/universal-credit/

Main criteria

  • Low income and savings below £16,000.

How to claim

To claim you need to apply on-line at www.gov.uk/universal-credit/how-to-claim

If you need help to claim you can either contact the

Universal Credit helpline: 0800 328 5644 or

Help to Claim – a free, independent, confidential service provided by trained advisers from Citizens Advice. To contact an adviser call:

England: 0800 144 8444

Wales: 08000 241 220

Scotland: 0800 023 2581

Utilities / Household Bills

Council Tax reduction

The disabled band reduction scheme aims to ensure that disabled people do not pay more Council Tax because they live in a larger property than they would have needed if they were not disabled e.g. a second bathroom or kitchen needed by that person. Having a disability does not automatically entitle you to a reduction, and the rules are quite strict.

Main criteria

  • Room in your house specifically required by a disabled person.

How to claim

Contact your local authority or council to find out if you are eligible.


Warm Home Discount Scheme

Primarily aimed at pensioners with a low income, but there may be eligibility for other vulnerable people with low incomes – contact your supplier directly to find out if they can help.

How to claim


Cold Weather Payments

If you are on a low income or receiving certain benefits you may be entitled to a Cold Weather Payment to help with extra heating costs during very cold weather in your area.

Main criteria

  • Need to be in receipt of Income Support, Income-based Job Seekers Allowance, Income related Employment and Support Allowance or Universal Credit and have a child who has a disability.

How to claim

You don’t need to claim this; if you are eligible you will be paid it automatically.

The Watersure scheme

Watersure is a scheme which helps some people with their water bills. To apply for the scheme, you must be on benefits and need to use a lot of water either for medical reasons or because your household has a certain number of school-age children. For example, having to wash large quantities of clothes and bedding regularly due to the child being on diuretics.

Main criteria

  • Need to be in receipt of certain benefits/tax credits e.g. Income Support, Working Tax Credit, Universal Credit.
  • Have a water meter (or be waiting for one to be installed).
  • Have a high essential use of water (this means you have three or more children under 19 in full-time education, or a child with a medical condition or disability that requires your household to use a lot of water).

Children who have certain conditions may automatically qualify under this scheme. Contact your water company directly to find out more and to apply. Your supplier may also offer additional help for customers struggling to pay their bills.

How to claim

Contact your water company


EDF Energy Trust

This offers grants to help pay debts on gas and electricity and other priority household debts, e.g. rent arrears, council tax; purchase essential household items, e.g. washing machines, cookers and provide other forms of financial assistance, e.g. bankruptcy deposits, funeral expenses.

Main criteria

  • Applications to the Trust are accepted from current domestic account holders of EDF Energy (the person/persons named on the bill).

How to claim

The easiest way to apply for a grant is via the Trust’s online application form. Alternatively you can print an application form to complete by hand which can be sent to the Trust’s freepost address.

Application form request line: 01733 421060


Energy Saving Trust

The website includes lots of useful information including grants and advice. The site has separate sections for England, Wales, Scotland and Northern Ireland. Links and helpline details are available throughout the site.

For more information


The Trust also offers independent expert advice on saving energy at home through their Energy Saving Advice Service.

Tel: 0800 444 202

For Scotland, call Home Energy Scotland free.

Tel: 0808 808 2282

For Wales, call Nest.

Tel: 0808 808 2244

For Northern Ireland, call NI Energy Advice Line

Tel: 0800 142 2865

Household Costs

Washing machine or extra bedding

The Family Fund gives grants to low income families to meet the additional needs of caring for a severely disabled child, 0 – 17 years of age. The value of the grant depends on the items requested, family circumstances and the funding available. There is no entitlement to a grant from the Family Fund. All grants are discretionary.

Main criteria

  • Eligibility includes income-related points (families receiving tax credits or income-related benefits). Please see website for full details of eligibility.

How to claim

Tel: 01904 550055


Disabled Facilities Grant

This is a local council grant to help towards the cost of essential adaptations to your home to enable you to continue to live there, e.g. provide a heating system suitable for your needs. Available in England, Wales and Northern Ireland. In Scotland, contact your local social services department. It can be a very long process, so get in touch with social services as soon as you know that you might need to adapt your home

Main criteria

  • Not means-tested for children.
  • Adaptations must be considered essential, within a fairly rigid set of rules.

How to claim


Contact your local social services occupational therapist, who you can find via your local council website.

Free nappies

The NHS Continence Service can fund and deliver nappies or other continence products if your child needs them due to their disability.

Main criteria

  • If your child still needs nappies due to their disability. Usually available from the age of three or four years depending on the local policy.

How to claim

Your health visitor, school nurse or GP should be able to put you in touch with the Continence Service.

Furniture Re-use Network (FRN)

A national body which supports, assists and develops charitable re-use organisations across the UK, by helping households in need access furniture, white goods and other household items at affordable prices. In addition, they support re-use charities in providing training and work placement opportunities for people who are socially excluded from education, training and employment.

Main criteria

  • Varies according to the individual organisation.

To find your local scheme


Hospital Costs

Visiting costs such as travel

The Family Fund gives grants to low-income families to meet the additional needs of caring for a severely disabled child. The value of the grant depends on the items requested, family circumstances and the funding available. There is no entitlement to a grant from the Family Fund. All grants are discretionary. Only one is given per year. Hospital visiting costs have been funded.

Roald Dhal’s Marvellous Charity provides grants for families facing financial hardship while caring for a child with a serious illness. They provide support to help families cope, from funding specialist equipment, creative therapies to hospital travel expenses.

Local charities to the hospital may have emergency funds. Ask your cardiac specialist nurse or hospital social worker. These funds may vary from time to time.

If you are on an income-related benefit, please contact the hospital benefit office to find out about help with travel costs to and from hospital appointments. You can also visit the NHS Website Checker Service to check if you are able to get help; https://services.nhsbsa.nhs.uk/check-for-help-paying-nhs-costs/start

Main criteria

  • Varies according to potential source of funding.

How to claim

Tel: 01904 550055


Tel: 01494 890465


MedicAlert bracelets

MedicAlert membership is £32 annually but as a registered charity they can also provide free or subsidised membership for people on a limited income. They currently have an Early Start programme where a basic bracelet and annual membership is covered for new families up to the child’s 10th birthday. Places on the scheme are limited and may not always be available due to funding. To apply visit their website and fill in the application form, alternatively call the number below to check that the scheme is open.

For more information

Tel: 01908 951051


Out and About


If your child receives higher rate DLA mobility allowance or enhanced rate mobility component of PIP you can get a car through a purchase scheme to help disabled people to hire or buy a car – you need to have at least 12 months of your DLA/PIP award remaining.

Main criteria

  • DLA mobility component at higher rate or enhanced rate of PIP mobility component.

How to claim

Tel: 0300 456 4566


Road tax exemption

If your child receives higher rate DLA mobility allowance or PIP mobility component at the enhanced rate you can apply to not pay for road tax, provided that the car is used only for the benefit of the child concerned. You can apply for a 50% rebate where someone qualifies for PIP mobility component at the standard rate.

Main criteria

  • DLA mobility component at higher rate.
  • PIP mobility component at enhanced rate.
  • PIP mobility component at standard rate to apply for 50 % rebate.
  • Will need an exemption certificate from the benefits agency.

How to claim

To find out more visit


Blue Badge parking scheme

This gives some parking concessions (places and sometimes prices).

Main criteria

  • Child receives the higher rate of the mobility component of DLA
  • Person receives the mobility component of PIP and scored at least eight points in relation to the ‘moving around’ activity in the PIP assessment.
  • It may be possible to get a Blue Badge before the age of three or without DLA/PIP if you have the support of your GP.

How to claim

To apply on-line go to www.gov.uk/apply-blue-badge or contact your local council to find out more and possibly apply by post.

Disabled person’s railcard

Buying this railcard at a price of £20 for one year or £54 for three years gives one third off most fares for the person plus accompanying adult. Children only pay for train travel from age five upwards.

Main criteria

  • Receive DLA mobility either lower or higher rate or receive DLA personal care middle or highest rate.
  • Receive Personal Independence Payments

How to claim

Tel: 0345 605 0525


Pushchair / wheelchair

The NHS Wheelchair Service will provide a Maclaren Major Buggy or may provide vouchers to that value towards a different pushchair. Accessories are not included, but you may find charities which will fund them. Over the age of five a wheelchair can be provided.

Main criteria

  • Individual assessment if child has difficulty walking.

How to claim

Referral from your GP and/or physiotherapist.

Driving lessons

You may qualify for up to 40 hours of driving lessons with a qualified instructor with Motability (you still have to pay for the theory and driving exams). It may be best to call to discuss your individual circumstances.

Main criteria

  • You are already a customer of the Motability Scheme or have a pending agreement with a confirmed delivery date of a new vehicle no more than four months from the date of the application for driving lessons; and
  • You receive one of the following, a means-tested benefit such as Income Support, Income-related Jobseekers Allowance, Pension Credit, Housing Benefit, Income-related ESA or Working/Child Tax Credit or Universal Credit; or
  • You are in full-time education or training (aged up to 25 years of age) and you or your parents receive one of the means-tested benefits listed above.

How to claim

Tel: Motability grants team on 0300 456 4566


Family Fund

They have a ‘Driving Ambitions Grant’ which is aimed at helping young people get started as a driver. They cannot help with ongoing driving lessons but the grant can help your child get started with a combination of; provisional driving licence, theory test, learning materials e.g. the highway code, first taster lesson, funding towards compulsory basic training (CBT) for moped riders.

How to claim


Transport to and from school

The local authority where you live may be able to provide your child with free or partially subsidised transport to their school. By law, local authorities have to make free transport arrangements for certain groups of eligible children. Who is eligible will depend on different factors, including:

  • Distance between home and school.
  • Safety of the route.
  • Family and social circumstances.
  • Health, special educational needs and/or disability.

Contact your local council to understand their criteria and the application/appeal process.

Holidays / Days Out

The Family Fund

The Family Fund gives grants to low-income families to meet the additional needs of caring for a severely disabled child. There is no entitlement to a grant from the Family Fund. All grants are discretionary. Holidays, family breaks and days out have been successfully applied for. You can apply to the fund more than once, but once per year.

Main criteria

  • Families receiving tax credits or income-related benefits. Please see website for full details of eligibility criteria. From any age.

How to claim

Tel: 01904 550055


Free swimming

Some pools will offer free entry to disabled people or their carers.

Main criteria

  • Swimming forms a part of a child’s therapy. From any age.

How to claim

Contact your local leisure centre or pool.

Free / reduced entry fees

Free or reduced price entry to certain attractions for either your child or yourself as their carer. Some examples are Twycross Zoo – reduced price for child and free carer, Space Centre – free carer, Warwick Castle – 50% for child and carer, Cadbury World – free carer, Legoland – free carer, Thorpe Park – free carer.

Obviously LHM cannot guarantee any of these prices – they are based on genuine personal experience but should be checked by yourself.

The Plus One card is a system to automatically give free entry to a carer – it appears to only exist in some parts of the UK.

Main criteria

  • DLA award letter or letter from your GP giving proof of disability.

How to claim

Contact the attraction you plan to visit, or look on their website.

For the Plus One card – contact your local council.

National Trust

The ‘Essential Companion’ card makes it simple to bring one or two carers or companions with you, free of charge. Just show the card when you arrive, and your carer won’t need to pay an entry fee. It’s in the name of the person with a disability. Even if you don’t have an Essential Companion card, you can still bring carers for free – the card just makes it quicker and simpler.

How to claim

Tel: 0344 800 1895

Email: enquiries@nationaltrust.org.uk


English Heritage

English Heritage has over 400 properties including abbeys, castles and stately homes. It provides free entry to carers or companions of the person with a disability to English Heritage sites.

How to claim

Tel: 0370 333 1181


Cinema Exhibitors’ Association card

This is a national card that verifies that the holder is entitled to one free ticket for a person accompanying them to the cinema. A processing fee of £6 is charged per card, the card is valid for one year from date of issue.

Main criteria

  • DLA or PIP award letter or letter from your GP giving proof of disability.

How to claim

Tel: 01244 526016


National Key Scheme for Toilets

This scheme offers disabled people access to approximately 9,000 locked public toilets across the UK. You can purchase a key and there is also a hard copy guide or a smartphone app available.

How to claim

You can buy a RADAR NKS key from Disability Rights UK and other online market places such as Amazon.

Tel: 0203 687 07901


You can buy the key for £4.75 including p&p.

A smartphone app which instantly locates your nearest toilet and gives directions can be bought from the App Store.

Taxicard and Capital Call

If you have mobility impairments and have trouble using public transport, you might be able to use subsidised taxi travel in London. The two schemes are called Taxicard and Capital Call.

You can use Taxicard wherever you live in London.

You can join Capital Call as well if you live in Bexley, Ealing, Enfield, Haringey, Hillingdon, Hounslow, Lambeth, Lewisham, Merton and Southwark.

Main criteria

You may be eligible for both Taxicard and Capital Call if:

  • You receive the higher rate mobility component of DLA.
  • You have been awarded eight points or more for the Moving Around Activity component of PIP.
  • You may be eligible if you don’t fit the above criteria by submitting medical evidence or having a mobility assessment – visit the website for more information. 

How to claim


Tel: 020 7934 9791


Bus travel

Contact your local council to find out if any concessions are available e.g. a disabled bus pass.

Over The Wall

This is a national children’s charity that provides activity camps for children with serious health challenges as well as separate camps for their siblings and weekend family camps too. All the camps are free of charge for everyone. They run camps in the South, Midlands and Scotland. They provide adult volunteers as well as a medical team who provide home-from-home care. They offer a wide variety of different activities which are planned and delivered to be inclusive of all our campers. Over The Wall camps are totally free of charge for every child and family.

Main criteria

To check what the criteria is for being able to attend a camp visit the link below which gives more detail www.otw.org.uk/criteria/

How to claim

Tel: 02392 477 110


Other Resources

There are a number of other sources of funding which can be used for different purposes.

Newlife Foundation

This is a children’s charity which helps disabled and terminally ill children. They offer equipment grants for specific items needed by a family to help care for their child, with a supporting letter from a health professional.

Tel: 0800 902 0095


The Family Fund

This fund gives grants to low-income families to meet the additional needs of caring for a severely disabled child. The value of the grant depends on the items requested, family circumstances and the funding available. There is no entitlement to a grant from the Family Fund. All grants are discretionary. Eligibility includes income related points (families receiving tax credits or income-related benefits).

Tel: 01904 550055


Your Opportunity: Help for 18 – 24 years olds

Family Fund are currently running a small grant programme called ‘Your Opportunity’ that supports disabled and seriously ill young people aged 18-24 years old who are living at home. It runs in the same way as their main Family Fund grants programme for those aged 17 and under. The main difference is that they cannot help with grants for family breaks through ‘Your Opportunity’.

Please not that young people cannot apply to ‘Your Opportunity’ independently – the application has to come from the parent or carer. You can only receive a ‘Your Opportunity’ grant once.

To find out more about what can be applied for, eligibility criteria etc visit www.familyfund.org.uk/help-for-18-24-year-olds

Chest, Heart and Stroke Scotland

This is a charity that supports families living in Scotland. They offer Personal Support Grants. Their grants are one-off payments designed to help those with respiratory, cardiac or stroke conditions purchase goods or services that may improve quality of life, independence, mobility or dignity. Some examples of the type of items include, aids to daily living, adaptations, respite care, white goods, heating costs, telephone installation, driving lessons, clothing and travel costs. Applications must be made through a ‘sponsor’. This needs to be someone like a Local Authority social worker, a health professional employed by the NHS, or in some cases, a representative from a voluntary agency.

Tel: 0131 225 6963


Roald Dhal’s Marvellous Charity

Provide grants for families facing financial hardship while caring for a child or young person aged 0 – 24 with a serious illness. They provide support to help families cope, from funding specialist equipment, creative therapies, everyday items to hospital travel expenses.

Tel: 01494 890465


Special Holidays

These charities offer special treats or holidays for children who are very ill or are living with severe disabilities. They have different eligibility criteria so you will need to check with them directly for further information.

Make a Wish Foundation UK

Grants wishes of children aged 3 – 17 living with a critical illness. They can accept referrals from parents, guardians, medical professionals or the children themselves.

Tel: 0118 304 2776


Starlight Children’s Foundation

Grant tailor-made wishes for children aged 4 – 18 (inclusive) who are suffering with a life-threatening or life-shortening illness. Starlight grant requests for UK travel as well as a wide variety of other types of wishes. Anyone can refer a child for a Starlight Wish – parents, grandparents, medical professionals, friends, social workers etc.

Tel: 020 7262 2881


Dreams Come True Charity

Fulfils ‘dreams’ for children and young adults, 2 – 21 years of age who are living with a serious or terminal condition.

Tel: 01428 726330


Happy Days Children’s Charity

Funds and organise holidays, days out and theatre trips throughout the UK for  young people (aged 3 – 17) with learning difficulties, physical or mental disabilities and with acute, chronic or life-limiting illnesses.

Tel: 01462 530710


When You Wish Upon A Star

Grants the wishes of children aged 2 – 16 living with a life-threatening illness. When You Wish Upon a Star are happy to receive initial wish enquiries from parents, guardians or medical professionals. You contact them by phone or email head.office@whenyouwish.org.uk stating your child’s name, age, address, medical condition and brief medical history.

Tel: 0115 979 1720


Family Holiday Association

The Family Holiday Association is a national charity dedicated to helping struggling families get a break. The family must be referred to the association by a teacher, family support worker or social worker. Families must be on a low income, have at least one child under 18 and not have had a holiday in the past four years. They do not offer breaks abroad.

Tel: 020 3117 0650


Willow Foundation

Willow provides special days for seriously ill 16 to 40 years olds and who live in the UK.

Tel: 01707 259 777


Rays of Sunshine

Grants wishes to seriously ill young people aged 3 – 18.

Tel: 0208 782 1171


Promise Dreams

Aims to make the dreams of children aged 0 – 18 who are seriously or terminally ill come true.

Tel: 01902 212451



ChildFlight is a children’s charity based at Manchester Airport and offers flights and holidays for sick and deserving children aged between 5 – 16/


Round Table Children’s Wish

Round Table Children’s Wish is a registered charity dedicated to granting handcrafted wishes for children and young people aged 4 – 17 with life-threatening illnesses across Britain and Ireland. They do say before completing an application form it’s best to speak to their wish co-ordinator.

Wish Co-ordinator Tel: 01202 514515


Further Information

Your local Citizens Advice

Citizens Advice offer free, confidential, impartial and independent advice from over 3,500 locations. These include high streets, community centres, doctors’ surgeries, courts and prisons.

It is available to everyone.

Advice may be given face-to-face or by phone. Most can arrange home visits and some also provide email advice. A growing number are piloting the use of text, online chat and webcams.

Search for your local Citizens Advice to see the full range of services it provides.

Tel: 03444 111 444



A charity which helps people access the money available to them though welfare benefits, grants and other help.


National Debtline

Helpline that provides free confidential and independent advice on how to deal with debt problems.

Tel: 0808 808 4000


Contact – For families with disabled children

A charity supporting families with disabled children. They have a freephone helpline with advisers who can help with benefits or tax credit issues.

Helpline: 0808 808 3555 (Mon-Fri – 9.30am – 5pm)