Money Matters

Caring for a child with Congenital Hyperinsulinism (CHI) can come with extra costs. This page outlines the financial support available to families, including disability benefits, tax credits, and help with housing, transport, and childcare.

Main Benefits

Disability Living Allowance
Personal Independence Payment
Carer’s Allowance
Tax credits.
Universal Credit
Help with council tax.

Disability Living Allowance (DLA)

To help meet the costs of disability.
Do not need a diagnosis.
Not means tested.
Paid in addition to other benefits, not treated as income and can lead to an increase in means tested benefits and tax credits.
Has two components – mobility component and care component
Child’s need for care and supervision must be substantially greater than non-disabled child of the same age.
Must meet certain residence and presence tests.

Why claim?

May need extra support to enable individual needs to be met.
Gateway to other support e.g. carers allowance, extra tax credits
To help meet the extra costs you have in looking after a child with disabilities.

How to Claim

To obtain a claim form, call Disability Living Allowance Helpline on 0800 121 4600 This means payment can be backdated to the date the phone call was made.

There is a six-week deadline to complete the form.
Think of as many professionals as possible who can support the claim and ask them to provide evidence.
It is often a good idea to get help filling in the form – it is important to arrange this as early as possible.

Personal Independence Payment (PIP)

Disability benefit similar to DLA but for children 16+
PIP Assessment
assessment “points based” on your ability to carry out a range of daily living and mobility activities.
looks how your health/disability impacts you to carry out these activities and the help you need.

How to Claim

Shortly after a child reaches 16 they receive a letter from the DWP inviting them to make a claim (in most circumstances).
They will not be moved to PIP automatically.
If child not able to manage their own money and benefits when they turn 16 you can apply to be their appointee
If already an appointee for DLA, this does not automatically move over to PIP.
Need to request an appointee form (same as DLA) and thereafter, the DWP will arrange a support visit and interview to ensure an appointee is needed.

Top tips

Take your time. Don’t try to finish it all in one go.
Get specialist advice from a welfare benefits advisor.
Keep a diary the week before tackling the form.
Give as much information as possible.
Include supporting evidence with the form.
Ask yourself – have you included enough evidence to convince someone who hasn’t met your child.
Keep a copy of the form.

How to Challenge

If your child is refused DLA or PIP or awarded a lower rate than expected, you can challenge the decision.
Reconsideration request – asking for the decision to be looked at again.
Appeal – If you are not happy with the reconsideration (but this may result in the rate going down, as well as up)

Carer's Allowance

Present rate for Carers’ Allowance is £76.75
Not means tested — but there is an earnings limit, presently £139.00 per week, less deductions (carer’s earnings only)
You can claim if your child receives DLA care at middle or higher rate or PIP daily living component at any rate.
Need to be providing at least 35 hours care per week.
Cannot get CA if a full-time student.
Anyone who meets tests can claim. Don’t necessarily need to be parent.

Universal Credit

New means tested benefit replacing all legacy benefits such as income Support, income related ESA, both types of tax credits and housing benefit
Single monthly payment (in arrears) includes money to cover rent charges.
Claimed on-line and usually a 5 week wait for 1st payment.
Has replaced all new claims for means tested benefits and tax credits in all parts of the UK.

Universal Credit - Existing Claimants

Existing means tested benefits/tax credits claimants who have no change of circumstances not currently being asked to claim UC.
Existing claimants will eventually be moved onto UC at some point. This is known as ‘managed migration’.
Managed migration was due to start in 2020 with the last claimants being moved onto UC by the end of 2023. This will be delayed by the Coronavirus outbreak.
Those worse off on UC after managed migration are transitionally protected i.e. get a top-up payment.

Universal Credit Concerns

Disability element is lower for most children.
Disabled parents will either get a carer element or a disability element but not both.
No payments for looked after children in residential accommodation.
Where couple both care full time for the same disabled child one partner may be asked to look for work

Universal Credit Positives

You can get a carer addition even if your earnings are too high to get Carer’s Allowance
Don’t need to work 16 hrs to get help with childcare, any number of hours will do.
85% of childcare costs met.
Those eligible for CA are exempt from ALL conditionality including work focused interviews.