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As a parent/carer of a child with chronic kidney disesae, there are three benefits you and your child may be entitled to: 

Click on the links or scroll down to find if you may be eligible and read more information.

 

What is Carer’s Allowance?

Carer’s Allowance is a benefit paid to people who provide care for others in their own home.

If you spend at least 35 hours a week caring for a disabled child or adult who receives certain benefits including the middle or higher rate for personal care of Disability Living Allowance, or the daily living component of Personal Independence Payment (either rate), you can apply for Carer’s Allowance. You must be over 16 and not in full time education. The allowance is taxable and you need to earn below a certain level of income.

 

Look here to find out more details:

www.nhs.uk

www.moneyadviceservice.org.uk

www.citizensadvice.org.uk

 

DLA is an allowance paid to help with the extra costs of having a disabled  child under 16.  The term disabled includes learning disability, physical disability, behavioural difficulties, mental health conditions and also medical conditions,

You may not think of your child as ‘disabled’ but you may still be able to claim DLA when your child has a long term illness such as chronic kidney disease.

 

There are two parts to DLA – care and mobility

Care
  • You will need to show that your child needs more care or supervision than a child of the same age who doesn’t have a disability
  • If you are caring for a young baby the care part of DLA isn’t paid until your baby reaches 3 months old but you can apply before that date. If your child is terminally ill you can get DLA before your child is three months old.
Mobility
  • You will need to show that your child needs support with walking or getting about in unfamiliar places or outdoors.
  • You can’t claim for mobility until your child is 3 years old.

Your child may get either the care or the mobility part or they may get both.

They must have needed support in these areas for three months and need support for at least a further 6 months.

 

Who can apply for DLA?

Anyone who is caring for a child as their parent – you don’t have to be a birth parent – you could be a step-parent, grandparent, aunt/uncle, sibling, foster parent or guardian.

DLA isn’t means tested so it doesn’t matter what your income is or how much savings you may have.

Any benefits you already get won’t be affected by you getting DLA.

Getting DLA may mean you can then apply for other benefits or receive a higher rate of the benefits you are already claim.

 

If you are not from the UK

If your child is subject to immigration control your immigration status could be at risk if you apply for DLA

If you or your child are subject to immigration control you usually can’t apply for DLA but you might be able to apply if you have lived in another EEA country, you’re a refugee or an immediate family member of a refugee.

No matter what your child’s immigration status is, they must have lived in England Wales or Scotland for a certain amount of time to be before you can apply.

If you are unsure about whether or not you can apply or just want to check anything you can ring one of the helplines listed below:

DLA Helpline

Telephone   0800 121 4600

Textphone   0800 121 4523

Mon – Fri     8am to 6pm

Calls are free in the UK

 

Alternatively, look on the websites:

gov.uk  

www.citizensadvice.org.uk (for the address or phone number of your local Citizen’s Advice Bureau)

www.contact.org.uk (previously Contact a Family).  Helpline 0808 808 3555.  Mon – Fri 9.30am to 5pm.  Calls are free in the UK. 

They have a booklet on claiming DLA for your child you can download from their website. 

 

What sort of things do I need to be helping my child with?

Care

You will need to be giving your child extra support (more than that needed by a child of the same age without any of the above conditions) with:

  • Washing
  • Dressing
  • Eating
  • Using the toilet
  • Communication
  • Settling in bed
  • Keeping an eye on their condition or medication

Even if your child is a baby who naturally needs help with the above you still may be giving them more support than another baby of the same age who doesn’t have what is classed as a disability eg having to give them treatment during the night

Mobility

You will need to be giving your child more support and supervision when they are getting around outside and this needs to be more than that needed by a child of the same age who doesn’t have a disability.

The support you give may be because your child cannot walk or can only walk short distances without feeling uncomfortable or in pain. It could also be that walking has a negative effect on their health or they have severe sight or hearing difficulties.

 

Children who are terminally ill

If a child is terminally ill and has less than six months to live there are different rules and some a different form (DS1500) that the child’s consultant or specialist nurse have to fill in. This needs to be sent in with the DLA form and the mobility part of the DLA form also needs to be filled in. If a terminally ill child is awarded the care part of DLA it will be at the high rate.

 

What if my child goes into hospital?

If your child is under 18 when they go into hospital or turns 18 when they are in hospital they will continue to get DLA or PIP – the new allowance that has replaced DLA for over 16’s.

If they are over 18 when they are admitted they will receive their PIP payments for 28 days but it will then be suspended.

 

What happens when a child is 16?

A benefit called Personal Independence Payment (PIP) has replaced DLA for people aged 16-64. You should get a letter before your child’s 16th birthday to tell you about changing to PIP.

 

How do I apply for DLA?

It’s important that you apply as soon as your child qualifies so you don’t lose out on money you are entitled to.

If you live in England, Scotland or Wales you can apply by contacting:

The Disability Service Centre 0345 605 6055 or textphone 0345 604 5312 and request an application form.

Or you can download an application form at gov.uk and apply by filling it in and posting to the address on the form.

 

What if my child’s circumstances change?

It is really important to tell of any changes to your child’s condition or treatment or any hospital stays as these may affect the amount you get or may mean you are no longer eligible to have DLA.

 

If you do get DLA - managing the money

If you are awarded DLA it can be tempting to use it as part of the family budget especially when things get difficult financially through having to have time off work or give up work but if you can try not to become dependent on the amount you get as it can change if your child no longer needs the support you initially gave and may at some point in the future stop altogether. Some people have a separate account for the DLA so they can keep track of it and it isn’t swallowed up with the family finances

See our Managing Your Money section for tips.

More information about DLA and other allowances is available from the following sources below.  The renal social workers can also give you advice and support.

DLA Helpline

Telephone   0800 121 4600.  Textphone   0800 121 4523.  Mon – Fri  8am to 6pm.  Calls are free in the UK.

www.gov.uk

Citizen’s Advice Bureau

Contact (previously known as Contact a Family) Telephone  0808 808 3555.  Mon to Fri 9.30am to 5pm.  Calls are free in the UK.

 

What is PIP ?

  • Personal Independent Payment or PIP has replaced Disability Living Allowance (DLA) for children over 16 years of age (it is paid for adults up to 64 years of age) It is paid by the Department of Work and Pension (DWP)
  • PIP payments are based on the amount of help your child needs with everyday tasks because of how their condition affects them.
  • Your child must have needed this help for 3 months and be expected to need it for at least another 9 months.
  • Your child must usually be living in England, Wales or Scotland when PIP is applied for and they must have lived there for at least 2 years unless they are a refugee or the immediate family member of a refugee.
  • There are other rules for people who have lived in another EEA country and these are complicated. There are also different rules for people who are in the armed forces, are terminally ill or who are already getting DLA and have been asked by the DWP to claim PIP.

It is best to phone the one of the helplines below to get advice on this.

PIP is made up of two parts which are called components:

  • the daily living component
  • the mobility component

Your child may get one or both components

PIP is based on the level of help your child needs most of the time because of how their condition affects them.

If your child needs help with any of the daily living activities below or is receiving DLA and approaching 16 you may want to consider making an application for PIP.  If you are unsure, have a chat with one of the renal social workers or ring one of the helplines.

 

What will my child be assessed on?

They will be assessed on 10 daily living activities and 2 mobility activities:

Daily Living
  • Preparing and cooking food
  • Eating and drinking
  • Managing their treatments
  • Washing and bathing
  • Managing continence or toilet needs
  • Dressing and undressing
  • Communicating with other people
  • Reading and understanding written information
  • Mixing with others
  • Making decisions about money
  • Planning a journey or following a route
Mobility
  • planning and following a journey
  • moving around

 

What do I do if my child already has DLA?

DLA is no longer given to children over 16

If your child has been receiving DLA before 16, the payments will stop once your child is 16.

Before your child is 16, the DWP will contact you about PIP then send you a reminder.

Just after your child has turned 16 they (or you, if you are an appointee) will receive a letter from the DWP asking them if they/your child wants to claim PIP.

To make sure the payments continue, your child will need to apply for PIP once they are 16.

If they are awarded PIP this will replace the DLA

DLA will not automatically change to PIP: your child will need to make a claim for PIP once they are 16.

You can become an ‘appointee’ in order to oversee your child’s PIP and the DWP will write to you asking if you want to do this. However you will need to show good reasons why your child is not able to manage PIP themselves.

 

How do I apply for PIP?

Whether your child has or has not been receiving DLA before their 16th birthday, if they want to apply for PIP they will need to:

Ring the DWP on 0800 917 2222 (Mon to Fri, 8am to 6pm) and tell them they want to apply for PIP.

When they ring they need to have this information:

  • Full name and date of birth
  • Daytime contact number
  • National Insurance Number
  • GP, consultant, nurse specialist or social worker’s details
  • Dates of any times they have been in hospital or having treatment
  • Bank details so PIP can be paid into an account

The DWP will send them a PIP2 form called ‘How your disability affects you’

  • They have 4 weeks to fill it in and return it
  • They can ask for extra time (2 weeks) and this will be given under some circumstances, but if you need this make sure you ring the DWP as soon as you can.
  • When they send the form back make sure they include any medical reports or documents to support their claim and make copies of all the documents they are sending back. Forms have been known to go missing.
  • When the DWP receive the form, they may or may not appoint a health professional to carry out a medical consultation with your child, and if they are asked to attend one, the professional will go through the questions on the PIP2 form for more detail.
  • The consultation will look at activities within each component – daily living and mobility – and give points depending on how much help is needed to do each activity. During the interview your child will be able to explain how their disability affects their daily living and you can support your child with this if they want you to.
  • The health professional will then send a report to the DWP who will make a decision about whether or not you will get PIP, at what level you will be paid and for how long.

For more detailed information on PIP and other benefits you could have a look at :

www.citizensadvice.org.uk

The website provides information on PIP and other benefits/advice

You can search for your local branch contact details who can give advice over the phone or by office appointments some offer home visits.

contact.org.uk (previously Contact a Family)

They have a booklet on PIP and other benefits post 16 as well as other advice for families.

Contact Helpline 0808 808 3555. Mon – Fri 9.30am to 5pm. Calls are free in the UK.

gov.uk

Advice on claiming PIP