Support for Parents of Poorly or Disabled Children


Caring for a poorly or disabled child can feel overwhelming โ€” emotionally, physically, and financially. Whether you're just starting out on this journey or you've been navigating it for some time, you're not alone.

We've put together a list of trusted organisations and resources that offer practical advice, financial support, emotional guidance, and more. These charities and services exist to help families like yours โ€” with everything from claiming Disability Living Allowance (DLA) to finding a place to stay near the hospital, accessing specialist nurses, or getting grants for everyday essentials.

We hope the links below give you a strong starting point and offer a bit of comfort in knowing there is help available.

  • Family Fund
    Provides grants to families raising disabled or seriously ill children under 18. Assistance includes funding for household items, computers, holidays, and more.
    ๐Ÿ”— familyfund.org.uk
  • Together for Short Lives
    Offers financial support and connects families to charities that can help fund equipment and other costs.
    ๐Ÿ”— togetherforshortlives.org.uk

  • Turn2Us
    Helps people in financial hardship access benefits, grants, and support services.
    ๐Ÿ”— turn2us.org.uk

  • React (Rapid Effective Assistance for Children with Potentially Terminal illness)
    Provides grants for children up to 18 years old with potentially terminal illnesses, covering a variety of needs.
    ๐Ÿ”— necuk.org.uk

  • Newlife Charity
    Provides essential equipment such as specialist beds, wheelchairs, communication aids, and sensory equipment to disabled and terminally ill children.
    ๐Ÿ”— newlifecharity.co.uk

  • Sandcastle Trust

    Offers grants for equipment and leisure activities to low-income families caring for a disabled child.
    ๐Ÿ”— sandcastletrust.org

  • Disability Grants Directory

    An online directory listing various grants for disabled children and their families, covering areas like housing, holidays, education, and more.
    ๐Ÿ”— disability-grants.org

  • WellChild Grants

    Provides grants to families for essential items and services to support the care of children with serious health needs.
    ๐Ÿ”— wellchild.org.uk

  • Buttle UK

    Offers grants for children and young people in crisis, which can include funding for essential items like beds, appliances, and clothing.
    ๐Ÿ”— buttleuk.org

  • Household Support Fund (HSF)

    A government scheme providing financial assistance for essential items such as white goods. Distributed by local councils, eligibility varies by area.
    ๐Ÿ”— gov.uk

  • GOV.UK โ€“ Benefits and Financial Support for Families
    Official government resource to check eligibility for various benefits and financial support.
    ๐Ÿ”— gov.uk

  • Rainbow Trust Children's Charity
    Provides emotional and practical support to families from diagnosis through treatment and beyond, including sibling and grandparent support.
    ๐Ÿ”— rainbowtrust.org.uk

  • Bliss
    Supports parents of premature or sick babies, offering guidance and information.
    ๐Ÿ”— bliss.org.uk

  • Roald Dahl's Marvellous Children's Charity
    Provides specialist nurses to support seriously ill children and their families.
    ๐Ÿ”— roalddahlcharity.org

  • The Sick Children's Trust
    Offers free 'Home from Home' accommodation near hospitals for families with sick children.
    ๐Ÿ”— sickchildrenstrust.org

  • SOFT UK
    Provides information on charities that can help with accommodation and other support while your child is in hospital.
    ๐Ÿ”— soft.org.uk

The Blue Badge scheme allows easier parking access for children with disabilities or serious medical conditions.


Eligibility (Children under 16):

  • The child has a permanent disability or health condition that makes walking difficult.

  • The child may need to be near a vehicle at all times due to dangerous medical episodesequipment needs, or life-threatening conditions.


Examples of Eligible Conditions:

  • Severe autism

  • Cancer treatments needing fast hospital access

  • Congenital heart disease

  • Severe epilepsy or respiratory conditions

  • Complex mobility needs or use of large medical equipment


How to Apply:

  • Apply online via:
    ๐Ÿ”— GOV.UK - Apply for a Blue Badge

  • Youโ€™ll need:

    • A recent photo of the child

    • Proof of address and identity

    • Medical evidence or a letter from a healthcare provider


Tips:

  • Emphasize why being close to a vehicle is critical for safety or mobility.

  • Even if your child can walk, explain if they can't do so safely, reliably, or repeatedly.

DLA helps cover the extra costs of looking after a child under 16 who:

  • Needs more care or supervision than a child of the same age without a disability.

  • Has mobility difficulties.


DLA Components:


  1. Care Component (Low, Middle, High rate): Based on how much help your child needs with personal care.
  2. Mobility Component (Lower, Higher rate): Based on difficulty getting around or needing supervision outdoors.


Examples of Qualifying Needs:

  • Frequent supervision due to epilepsy

  • Medical routines requiring skilled attention

  • Severe learning difficulties or behavioural issues

  • Physical disabilities needing help with walking or transfers


How to Apply:

  • Download or request a DLA form:
    ๐Ÿ”— Apply for DLA

  • Ring DWP to request a form: 0800 121 4600

  • Provide detailed examples of daily strugglesmedical appointmentsnight-time care, etc.


Tips for Application:

  • Keep a diary of your childโ€™s needs over several days.

  • Be honest and detailed โ€” donโ€™t downplay needs.

  • Supporting letters from GPs, teachers, or therapists are helpful.


Helpful Guides & Resources:

  • Contact โ€“ For Families with Disabled Children
    Great DLA help guides and helpline.
    ๐Ÿ”— contact.org.uk

  • Cerebra DLA Guide
    Clear and in-depth guide for parents.
    ๐Ÿ”— cerebra.org.uk

The Motability Scheme helps people with disabilities โ€” including children โ€” lease a new, reliable car, wheelchair-accessible vehicle (WAV), scooter, or powered wheelchair using their mobility allowance.


Who Can Use the Scheme?

Parents or guardians of a child (age 3 or older) can apply on their behalf if the child receives one of the following:

  • Higher Rate Mobility Component of Disability Living Allowance (DLA)

  • Enhanced Rate Mobility Component of Personal Independence Payment (PIP) (for older teens)


Whatโ€™s Included in the Lease?

The Motability Scheme is all-inclusive, meaning the lease covers:

  • Insurance (for up to 3 named drivers)

  • Road tax

  • Breakdown assistance

  • Servicing and maintenance

  • Tyres and windscreens


Thereโ€™s also the option for adaptations to suit your childโ€™s needs, many of which are available at no extra cost.


Types of Vehicles Available

  • Standard cars (many with no upfront payment)

  • Wheelchair accessible vehicles (WAVs)

  • Electric vehicles

  • Scooters and powered wheelchairs (for those eligible)


How to Apply


Check eligibility at the official site:
๐Ÿ”— motability.co.uk


Visit a local Motability dealer to choose a vehicle.


The lease is usually for 3 years (or 5 for WAVs).


Extra Support

  • If you're not sure if your child qualifies, the Motability team can help.

  • Grants may be available through Motability Foundation if you need a larger vehicle or adaptation and can't afford the advance payment.

The Disabled Facilities Grant (DFG) is a government grant to help make changes to a home so that a disabled child (or adult) can live more safely and comfortably. It's available across England, Wales, and Northern Ireland.


What Is It For?

The DFG can help cover the cost of things like:

  • Installing a stairlift or hoist

  • Adding a downstairs bedroom or bathroom

  • Widening doors for wheelchair access

  • Installing ramps or grab rails

  • Improving lighting or heating for medical needs


Can Parents Apply for Their Child?

Yes! Parents or guardians can apply on behalf of a disabled child under 18. Your local council may not means-test the income of families applying for a child (unlike adult applications), meaning many families qualify regardless of income.


How Much Can You Get?

  • Up to ยฃ30,000 in England

  • Up to ยฃ36,000 in Wales

  • Varies in Northern Ireland and Scotland
    (Scotland has a different system โ€” see below)


How to Apply:


  1. Contact your local council (Housing or Social Services team) ๐Ÿ”— Find your local council
  2. home assessment will be done, usually by an occupational therapist.
  3. The council will decide what adaptations are โ€œnecessary and appropriateโ€ for your child.


How Long Does It Take?

It can take time โ€” from a few weeks to several months, especially if building work is involved. The sooner you apply, the better.


In Scotland?

Scotland has a different system, but similar support is available through your local authorityโ€™s Equipment and Adaptations Grant.

๐Ÿ”— Adaptations in Scotland (Care and Repair Scotland)