MED13L UK
MED13L UK
  • Home
  • Our faces
  • Events
  • Leaflets
  • RARE X
  • New diagnosed, now what?
  • Support & Resources
  • Key terms
  • We collaborate with!
  • MED13L International
    • France
    • Germany
    • Spain
    • United States

Support for Families and Carers

Blue Badge (Disabled Parking)

Blue Badge (Disabled Parking)

Blue Badge (Disabled Parking)

 If your child has mobility difficulties, behavioural challenges, or significant safety risks when walking near traffic, you can apply for a Blue Badge.

This allows you to park closer to shops, schools, or hospitals.

Apply through your local council:
 Apply for or renew a Blue Badge - GOV.UK
 

Carer’s Allowance

Blue Badge (Disabled Parking)

Blue Badge (Disabled Parking)

 If you spend at least 35 hours a week caring for your child, you might be able to claim Carer’s Allowance.

It’s currently £81.90 a week (2024/25), and you don’t have to be related or live with the person you care for.

Find out more and apply here: Carer's Allowance: How it works - GOV.UK 

Family Fund Grants

Blue Badge (Disabled Parking)

Travel Assistance & Discounts

Family Fund provides grants to help families raising disabled or seriously ill children. You could apply for things like:

→ Sensory toys
→ Technology (iPads, tablets)
→ Days out or family breaks
→ Bedding or clothing
→ W\hite goods
 

They look at your income, benefits, and your child’s needs.

Check if you’re eligible and apply here:
familyfund.org.uk
 

Travel Assistance & Discounts

Travel Assistance & Discounts

Travel Assistance & Discounts

Depending on where you live, there may be help with travel, including:

  • Disabled Persons Bus Pass (free bus travel)
     
  • Disabled Railcard (1/3 off train fares)
     
  • Motability Scheme (using DLA Mobility component for a car)
     
  • Local council transport for school or medical appointments
     

Find out more:
Transport support services for disabled people: Trains - GOV.UK 

Carer’s Card

Travel Assistance & Discounts

Warm Home Discount

A Carer’s Card is a simple ID card that shows you are a carer. It can be helpful in emergencies and may give you discounts at some attractions, cinemas, or transport services.

→ Carers UK Card (£8.95 per year)
Includes your photo, emergency contact details, and proof you are a carer.

Apply here:  Carers Digital – CarersUK making life better for carers 

Warm Home Discount

Travel Assistance & Discounts

Warm Home Discount

 The Warm Home Discount is a government scheme that gives money off your electricity bill over the winter.

You could get £150 off your bill if you:
→ Are on a low income
→ Get certain benefits
→ Or have high energy costs

It’s usually applied automatically if you’re eligible, but some people need to apply.

→ Find out more and check if you qualify:
Warm Home Discount Scheme: Overview - GOV.UK 

Disabled Facilities Grant

Cinema Card / Theme Park Discounts

Cinema Card / Theme Park Discounts

A Disabled Facilities Grant helps cover the cost of home adaptations to make living easier and safer for a disabled child or adult. This can include things like ramps, stairlifts, accessible bathrooms, or specialist equipment. It’s means-tested and provided by your local council.

Apply or find out more here:  Disabled Facilities Grants - GOV-UK Find a grant 

Cinema Card / Theme Park Discounts

Cinema Card / Theme Park Discounts

Cinema Card / Theme Park Discounts

 If your child has a disability, you may be eligible for a CEA Card, which allows a carer to go to the cinema for free when accompanying them. Many theme parks, zoos, and attractions across the UK also offer free carer tickets — check their accessibility policies when booking.

Apply for the CEA Card here: https://www.ceacard.co.uk/

Disability Living Allowance (DLA)

Please reach us at MED13L.UK@hotmail.com if you cannot find an answer to your question.

 

Disability Living Allowance (DLA) is extra money from the government to help families with the additional costs of raising a child with a disability or medical condition, like MED13L syndrome.

It’s for children under 16 who need more help than other children their age.

You don’t need a diagnosis to apply, it’s about what extra care or support your child needs day-to-day.


  

DLA is paid every 4 weeks. There are two parts to it — Care and Mobility. You might get one or both, depending on your child’s needs.

Care Component (2024/25 rates)

For help with things like feeding, washing, dressing, medication, or supervision.

Rate Weekly Amount:

Lowest £28.70 per week

Middle £72.65 per week

Highest £108.55 per week  

Mobility Component (2024/25 rates)

For children (age 3+) who have difficulty walking or need extra support getting around.

Rate Weekly Amount:

Lower £28.70 per week

Higher £75.75 per week  


 Receiving DLA might also help you access:

  • Carer’s Allowance (for the person caring for your child)
     
  • Blue Badge for parking
     
  • Travel passes or vehicle schemes
     
  • Extra help with other benefits or housing


 You can apply online or by post.

→ Apply online here: gov.uk/disability-living-allowance-children
→ Or call for a paper form: 0800 121 4600

There are organisations who can help you fill in the form — don’t struggle alone!


 We know forms like this can feel overwhelming. If you’re a MED13L UK family and would like help or someone to talk it through with, please reach out to us. We’re here for you. 

Contact us on: med13l.uk@hotmail.com



Education, Health and Care Plan (EHCP)

Please reach us at MED13L.UK@hotmail.com if you cannot find an answer to your question.

 An Education, Health and Care Plan (EHCP) is a legal document that describes your child’s special educational needs (SEN) and the extra help they need at school or nursery.

It’s designed for children and young people (up to age 25) who need more support than a school or nursery can normally provide on its own.

For children with MED13L syndrome, an EHCP can help make sure they get the right help to learn, develop and thrive.


 

An EHCP looks at the whole child, not just education.

It covers:

  • Special educational needs (learning, communication, sensory needs etc)
     
  • Health needs (medical conditions, therapies, equipment)
     
  • Care needs (help with personal care, routines, safety etc)
     
  • The support your child needs to reach their goals
     
  • The school or setting they should attend
     
  • Any funding or specialist help required
     

It’s a legally binding document, meaning the local council must provide the help written in it.


 Anyone can request an EHCP assessment:

  • Parents or carers
     
  • School, nursery or health professionals
     
  • Young people over 16 (if able)
     

You don’t need a diagnosis to apply,  it’s about your child’s needs.


 

Step 1 – Request an EHC Needs Assessment

Write to your local council asking for an EHC needs assessment.

Step 2 – Assessment

The council will gather information from you, school, doctors, therapists etc.

Step 3 – Decision

The council decides if they will create an EHCP. If yes → they write a draft plan.

Step 4 – Final EHCP

You can check the draft, ask for changes, then the council issues the final EHCP.


 Depending on your child’s needs, an EHCP could provide things like:

  • 1:1 support in school
     
  • Speech and language therapy
     
  • Occupational therapy
     
  • Specialist equipment
     
  • A specific school placement
     
  • Extra funding for support staff
     
  • Help with transport to school



 You apply through your local council.
Find your council’s details here: gov.uk/find-local-council

There are charities and SENDIASS services in every area that can help you through the process.


  

The EHCP process can feel long and confusing — but you don’t have to do it alone.

→ Contact SENDIASS (free advice service for SEND families)
Find your local service here: councilfordisabledchildren.org.uk/sendias

→ Or contact MED13L UK, we’re happy to help or listen.


Copyright © 2025 MED13L UK - All Rights Reserved.

  • Privacy Policy

This website uses cookies.

We use cookies to analyze website traffic and optimize your website experience. By accepting our use of cookies, your data will be aggregated with all other user data.

DeclineAccept