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.

Contents

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 Benefits Helpline: 0345 712 3456

Northern Ireland DLA: 0300 123 3356

www.gov.uk/disability-living-allowance-children

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 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 £116 per week after certain deductions have been made (rate correct in May 2017).
  • Can be claimed from birth upwards.

How to claim

Carers Allowance unit: 0345 608 4321

www.gov.uk/carers-allowance

If you live in Northern Ireland

Tel: 0300 123 3356

www.nidirect.gov.uk/carersallowance

Extra Child Tax Credit (CTC)

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

Contact a Family employ welfare rights specialists who can advise on claiming tax credits. Helpline tel: 0808 808 3555.

Main criteria

  • Must receive DLA personal care at any rate. Can be claimed from birth upwards.

How to claim

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

www.gov.uk/child-tax-credit

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: 0345 850 3322

To make a claim tel: 0800 917 2222

www.gov.uk/pip

If you live in Northern Ireland

www.nidirect.gov.uk/pip

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. There is an initial personal allowance followed by a series of premiums which may apply e.g. for carers and lone parents with a disabled child.

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 055 6688

www.gov.uk/income-support

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 and you live in an area where the full Universal Credit service has been introduced. To find out if it applies in your area visit https:universalcreditinfo.net and type in your postcode.

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 July 2019 and March 2022.

Main criteria

  • Low income and savings below £16,000.

How to claim

Universal Credit claim line: 0345 600 0723

www.gov.uk/universal-credit


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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.

www.gov.uk/council-tax/discounts-for-disabled-people

Warm Home Discount Scheme

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

How to claim

Tel: 0345 603 9439

www.gov.uk/the-warm-home-discount-scheme

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 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

www.ofwat.gov.uk/households/customer-assistance/watersure

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

www.edfenergytrust.org.uk

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

www.energysavingtrust.org.uk

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

Tel: 0300 123 1234 (advice is free, telephone call is national rate)

For Scotland, call Home Energy Scotland free.

Tel: 0808 808 2282

 


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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. 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. Young people aged 16 and 17 can make an application in their own right.

How to claim

Tel: 01904 550055

www.familyfund.org.uk

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. 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

www.gov.uk/disabled-facilities-grants

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

www.frn.org.uk


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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.

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.

Main criteria

  • Varies according to potential source of funding.
  • The Family Fund – eligibility includes some income-related points (families receiving tax credits or income-related benefits). Please see website for full details of eligibility. Young people aged 16 and 17 can make an application in their own right.

How to claim

Tel: 01904 550055

www.familyfund.org.uk

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 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

www.medicalert.org.uk


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Out and about

Motability

If your child receives higher rate DLA mobility allowance or enhanced rate mobility component of PIP you can get a car through a purchase sceme 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

Telephone: 0300 456 4566

www.motability.co.uk

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 per cent 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

www.gov.uk/financial-help-disabled/vehicles-and-transport

Blue Badge

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

Contact your local authority or council to find out more.

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

Telephone: 0345 605 0525

www.disabledpersons-railcard.co.uk

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 Tax 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

www.motability.org.uk/charitable-grants

 

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. The value of the grant depents 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. Holidays or family breaks have been successfully applied for. You can apply to the Fund more than once, but only 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

www.familyfund.org.uk

Free swimming

Some pools will offer free entry to disabled people.

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.

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

All National Trust properties allow free access to the carer of a disabled person. Additionally you can contact the central office of the NT for an ‘Access for All Admit One Card’ which is issued in the name of the disabled person and so can be used by any carer accompanying that person.

How to claim

Access for All, The National Trust

Tel: 01793 817634

Email: enquiries@nationaltrust.org.uk

www.nationaltrust.org.uk

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: 023 9224 8545

www.ceacard.co.uk

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.

Main criteria

  • None.

How to claim

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

Telephone: 020 7250 8191

www.disabilityrightsuk.org

You can buy the key for £4.50 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

Taxicard

Telephone: 020 7934 9791

www.londoncouncils.gov.uk/services/taxicard

Bus travel

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


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Other sources

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.

Telephone: 01543 462777

www.newlifecharity.co.uk

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).

Telephone: 01904 550055

www.familyfund.org.uk

Chest, Heart and Stroke Scotland

This charity offers Personal Support Grants e.g. for holidays, hospital visiting, equipment, white goods. They support families living in Scotland. Applications must be made by a sponsor (e.g. health visitor) on your behalf.

Telephone: 0131 225 6963

www.chss.org.uk


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One-off 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 life-threatening illness.

Telephone: 01276 40 50 70

www.make-a-wish.org.uk

Starlight Children’s Foundation

Grants the wishes of children aged 4 – 18 suffering from potentially life-shortening or life-threatening illness.

Telephone: 020 7262 2881

www.starlight.org.uk

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.

Telephone: 0800 018 6013

www.dreamscometrue.uk.com

Happy Days Children’s Charity

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

Telephone: 01582 755 999

www.happydayscharity.org

When You Wish Upon A Star

Aims to fulfil wishes for any child (aged 2 – 16 years) who has a life-threatening or terminal illness.

Telephone: 0115 979 1720

www.whenyouwishuponastar.org.uk

Family Holiday Association

Helps disadvantaged children and their families with much-needed breaks. The family must be referred to the association by social services, a health professional or local voluntary organisation. At least one of the children must be over the age of three.

Telephone: 020 3117 0650

www.familyholidayassociation.org.uk


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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.

Telephone: 03454 04 05 06

www.citizensadvice.org.uk

Turn2Us

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

Telephone: 0808 802 2000

www.turn2us.org.uk

National Debtline

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

Telephone: 0808 808 4000

www.nationaldebtline.org

Contact a Family

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)

www.cafamily.org.uk

Updated: August 2017

Review due: August 2018

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