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 cardiac liaison nurse or hospital social worker. Other general sources of information are your local Citizens Advice Bureau, 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.

A useful website mentioned throughout is the government website.

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. The higher rate is the only possibility from age three to five.

Main criteria

Personal care – if baby or child needs more care than a non-disabled child of their age. Can be claimed from age three months 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: 028 9090 6182

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

The LHM office 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 £110 per week after certain deductions have been made (rate correct in Sept 2015).
  • Can be claimed from age three months upwards.

How to claim

Disability Benefits Helpline: 0345 712 3456

www.gov.uk/carers-allowance

If you live in Northern Ireland

Tel: 028 9090 6186

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 age three months upwards.

How to claim

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

www.gov.uk/child-tax-credit

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 or 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

Personal Independence Payment (PIP)

This benefit replaces DLA for adults aged 16-64. It is being gradually introduced across the country, so check the situation carefully – you may be invited to apply to renew DLA, or your may need to apply for PIP.

  • Two components – mobility and daily living.

Main criteria

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

How to claim

www.gov.uk/pip

Tel: 0345 850 3322

If you live in Northern Ireland

www.nidirect.gov.uk/pip

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


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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

Home Heat Helpline

The Home Heat Helpline advises people worried about paying their energy bills and keeping warm during the winter. It also gives advice to low-income households in urgent need of heating help and advice.

How to claim

Tel: 0800 33 66 99 (free to call, open 9am-6pm Monday to Friday).

www.homeheathelpline.org.uk

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 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.

Watersure scheme

Offers help with water bills if customers are high water users due to a disability within the family which requires the use of extra water e.g. having to wash large quantities of clothes and bedding regularly due to the child being on diuretics.

Main criteria

  • You need to be in receipt of certain benefits e.g Income Support, Working Tax Credit.

How to claim

Contact your water company

www.ofwat.gov.uk/consumerissues/assistance/watersure

EDF Energy Trust

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)

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.

For more information

Tel: 0345 603 9439

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


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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 benefi ts). 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 621115

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

Social Services Occupational Therapist.

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 or school nurse should be able to put you in touch with the Continence Service.


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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 specialist cardiac 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 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 621115

www.familyfund.org.uk

MedicAlert bracelets

For MedicAlert membership is £30 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 tenth birthday.

For more information

Tel: 01908 951045

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 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 8 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 fi nd 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 5 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 diffi culty walking.

How to claim

Referral from your GP and/or physiotherapist.

Driving lessons

If you are aged between 16-29 and a Motability customer (with an existing lease), Motability may be able to help you with the cost of driving lessons. Unfortunately, no funding is available for driving practical or theory tests.

There are a number of different scenarios regarding the level of funding available, depending on whether you have a Motability car, whether you are in full-time education, etc, so it is best to phone to discuss your individual circumstances.

The Family Fund encourages requests directly from 16 and 17 year olds for things which have a particular meaning for their age group, such as driving lessons.

Main criteria

  • For Motability – young people aged between 16 and 29 and in receipt of an existing lease.
  • For the Family Fund they accept requests directly from 16 and 17 year olds.

How to claim

Tel: Motability grants team on 0300 456 4566

www.motability.co.uk

Contact the Family Fund

email – [email protected]

www.familyfund.org.uk

Transport to and from school

You may be able to receive help with transport to school if your child has a statement of Special Educational Needs and you are not able to get them to their nearest appropriate school. 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 621115

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:[email protected]

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

How to claim

Tel: 023 9224 8545

www.cecard.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 got 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
  • Your GP endorses your application. 

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 621115

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: 0808 801 0899

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 405 070

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: 020 762 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 fulfi l 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

Citizens Advice Bureau

Citizens Advice Bureaux 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 bureaux 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 bureau to see the full range of services it provides.

Telephone: 03444 111 444 (England); 03444 77 20 20 (Wales)

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 confi dential and independent advice on how to deal with debt problems.

Telephone: 0808 808 4000

www.nationaldebtline.co.uk

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.cafmily.org.uk

Updated: March 2015

Review due: March 2016

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