For Families and Carers : Benefits Background Information

This page has general information about how the benefits system works.

This information is for general guidance only. If you would like more specific information about your situation, please call our Helpline on 0333 1212 300 and ask to speak to the benefits adviser.


After the age of 16, the DWP will want to deal directly with your son or daughter.  If they are not able to manage their own benefits, you can apply to become their appointee.  This means the DWP will deal with you as if you were your child (that is, write you letters, speak to you on the phone, etc.)  It means you have full responsibility for dealing with your child’s benefits.

Becoming an appointee is usually a formality.  Apply in writing to the DWP.  You may have a visit from a DWP officer.

For information about becoming an appointee, go to Appointees in GOV.UK.

Benefits cap           

The benefit cap places a limit on the total amount working age people can receive in benefit.

Some people are exempt from this cap if they, their partner or child (who they receive child benefit for) are receiving working tax credit, attendance allowance, disability living allowance, personal independence payment, carers allowance, in receipt of the support component within employment and support allowance or receiving a carer element within universal credit.

For those people living in Northern Ireland, the link is here.

Contributory and means-tested benefits

Contributory benefits depend on your National Insurance contribution record. You have to have paid enough contributions over enough years to get the benefit.    Examples are retirement pension, contributory Employment and Support Allowance, contributory Jobseeker’s Allowance.

Benefits which are not contributory are mostly means-tested.  So you only get the benefit if your income and savings are low enough.  Examples are universal credit ,income support and housing benefit.  Benefits have different means-tests.

Some benefits have a contributory part and a means-tested part.  For example, ESA has both.  If you satisfy the National Insurance conditions for ESA, you will get contributory ESA.  Otherwise, you have to pass the means-test to get income-related ESA.

Disability Living Allowance and Personal Independence Payment are not contributory and not means-tested.  You get them if you met the criteria about your sickness or disability.

Discretionary trusts 

Parents and carers of young people with Down’s syndrome often worry about what to do in a situation where their family member with Down’s syndrome has savings.  This could happen through an inheritance or gift, or through arrears of benefits.

As most young people with Down’s syndrome are not able to manage savings on their own, it is sensible to think about setting up a discretionary trust fund.  The money is put in a trust, and managed by trustees.  The young person with Down’s syndrome does not have legal control over the money.  It is given out at the discretion of the trustees. In order for it to be disregarded by the DWP, there needs to be more than one beneficiary of the trust so the fund cannot be seen as solely theirs.

This safeguards the young person with Down’s syndrome.  It also means that these savings are not taken into account when the young person applies for means-tested benefits, such as Income-based Employment and Support Allowance.  It is probably a good idea to set up a discretionary trust in good time, before your child turns 16.

For further information please see our factsheet: ‘Wills and Trusts

Immigration status and benefits 

Your immigration status affects which benefits you can claim.  If you are not a British citizen, EEA national, or don’t have indefinite leave to remain, get advice before claiming any benefits.  You may risk your right to stay in the UK.

Presence and residence rules

Benefits have rules about being in the UK, and how long you have been here.  If you frequently leave the UK for long periods, or have not been here long, check the presence and residence rules for the benefits you are applying for. These have recently been changed which means that some people will have to wait up to 2 years before they can make a claim for DLA, PIP or AA.

Reviews, supercessions, appeals

If you disagree with a decision made by the DWP, there are steps you can take. What to do next depends on which benefit you are claiming. Get advice from one of the organisations mentioned in the back of this information sheet if:

  • you have just claimed a benefit and do not agree with the decision
  • you have been receiving a benefit for some time, but now think it is wrong
  • the DWP decide they want to reconsider your benefit.

Mandatory reconsiderations – A mandatory reconsideration is one which has to be asked for within one month of the decision makers letter being sent to you. The case is looked at again by a different decision maker. The decision can be revised. If the decision is maintained then you can go on and ask for an appeal if you think their decision is wrong.

Appeals for benefits administered by DWP and HMRC have to be made to HM courts and Tribunal Service. You appeal on form SSCS1.You can download a form. You also need to send a copy of the mandatory reconsideration letter and a statement of reasons for the decision makers decision. If the reconsideration letter did not include reasons, you can ask for a written statement of reasons within one month of that decision letter. The one month time limit will be extended by an additional 14 days should you wish to appeal after receiving the written reasons.

If your appeal is for housing benefit, your local authority will have a form and you will need to contact them for one.

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