GDUK is proud to announce our new partnership with the Disability Law Service,  a charity which assists disabled people and their families with legal advice.

Below DLS lawyers answer frequently asked questions about benefits from parents and carers of children with genetic disorders.

If you wish to contact the charity call 020 7791 9800, email: or go to their website:

We have just had our son diagnosed with a rare genetic disorder. I will have to leave my job to take care of him. What benefits will we be eligible for?

If you have paid sufficient National Insurance contributions you may be able to claim contribution-based Jobseeker’s Allowance or contributory Employment and Support Allowance. Even if you get contributory benefits you may also have entitlement to a means-tested benefit top-up.  

If you are not entitled to a contributory benefit, you may qualify for a means-tested benefit, see below for more information on which benefit you may be entitled to claim.

You can do an online calculation of your likely benefit entitlement by using an online benefit calculator.  Recommended benefit calculators can be found at:

Jobseeker’s Allowance

Jobseeker’s Allowance (JSA) is paid if you are unemployed or working part time (less than 16 hours a week) and are available for and actively seeking work.  Contribution-based JSA is paid for up to six months, but only if you paid enough Class 1 National Insurance contributions when you were working. You can get it even if your partner works or if you have savings.

Income-based JSA is payable if you have not paid enough Class 1 National Insurance contributions, were self-employed or when your contribution-based JSA stops. It can also top-up contribution-based JSA in some cases. It can be paid for as long as you keep meeting the rules for it.

The first step in making a new claim for JSA is to fill in the Jobseeker’s Allowance online claim form.

Once you have filled in the online form you will then need to attend an interview with JobCentre Plus. If you can’t apply online then a telephone helpline is available. For more information see the GOV.UK help page on how to claim JSA.

Employment and Support Allowance

You can get Employment and Support Allowance (ESA) if your ability to work is limited by ill health or disability.

You may be able to get Employment and Support Allowance if you have an illness or disability that affects your ability to work.

There are 2 types of Employment and Support Allowance: contribution-based and income-related.

  • Contribution-based Employment and Support Allowance is paid if you paid enough National Insurance contributions when you were working. You can get it even if your partner works or if you have savings. Contributory ESA entitlement is limited to one year from the time entitlement began for those in the work-related activity group.
  • Income-related Employment and Support Allowance is payable if you have not paid enough National Insurance contributions. Income-related Employment and Support Allowance has no time limit and can be claimed for as long as you meet the qualifying criteria. It can also top-up contribution-based Employment and Support Allowance.

When you first make a claim for Employment and Support Allowance all you need to show is a medical certificate. However, after the ‘assessment phase’ of around 13 weeks Employment and Support Allowance is only payable if you meet the ‘Work Capability Assessment’ rules. Most people are asked to go to a face to face assessment to see if they meet the criteria, this may be in a local health centre or if you have particular health needs an assessor may come to your home.

A person who is assessed or treated as having limited capability for work will move on to ‘main phase’ ESA after around 13 weeks of their claim. They will get an extra component paid on top of their ESA. The amount of the extra component depends on whether you are classified as being in the ‘work related activity group’ or the ‘support’ group. Which group you are assigned to depends on the result of your Work Capability Assessment.

Your eligibility for contribution-based Employment and Support Allowance depends on if you paid enough National Insurance contributions when you were working. Your eligibility for income-related Employment and Support Allowance depends on your income and capital.

More details on how the process for claiming and assessing Employment and Support Allowance are available on the GOV.UK website: You can make a claim for Employment and Support Allowance by phoning 0800 055 6688 (or 0800 023 4888 if you have a speech or hearing impairment).

If you live in Northern Ireland you can make a claim for Employment and Support Allowance by phoning 0800 085 6318 (or 08003283419 if you have a speech or hearing impairment).

You will not be paid for the first 7 days of your claim, these are called waiting days.

Income Support

Income support is paid to certain people who are not expected to look for work. These include carers and certain lone parents. It is intended to provide for basic living expenses and can be paid on top of other benefits such as carer’s allowance. You can also get money to help with mortgage payments.

Only certain people are allowed to claim income support. You may be able to get IS if you are:

  • entitled to Statutory Sick Pay (SSP)
  • appealing against a decision that you are capable of work following a work capability assessment (WCA)
  • caring for someone and either you are getting Carer’s Allowance, or the person you are looking after gets Attendance Allowance (AA) or constant Attendance Allowance, or the middle or highest rate of Disability Living Allowance (DLA) care component
  • You are a lone parent and responsible for a child under 5 (under 7 in Northern Ireland)
  • pregnant and incapable of work because of your pregnancy or due to have your baby within the next 11 weeks or have had a baby within the last 15 weeks

Income Support is administered by JobCentre Plus. To claim call 0800 055 6688 (8am – 6pm Monday to Friday) Welsh language: 0800 012 1888. A textphone service is available on 0800 023 4888.

You can only claim one of these means tested out of work benefits – if you think that you meet the criteria for more than one of these benefits seek further advice about which one you should claim.

Carer’s Allowance

If you care for someone who claims a disability benefit you may be entitled to Carer’s Allowance.

To claim Carer’s Allowance you must:

  • Be aged 16 or over;
  • Spend at least 35 hours a week looking after the person in need of care;
  • Have net earnings of less than £116 a week. Any childcare costs or replacement care costs associated with working can be deducted from your earnings when calculating whether you qualify.
  • If you are in full-time education, to be entitled you must spend less than 21 hours in ‘supervised study’, and not doing a course described as full-time by the college or establishment providing it.

In addition, the person for whom you care must be claiming (or waiting to hear about):

  • Attendance Allowance,
  • Disability Living Allowance (middle or higher rate for personal care),
  • Constant Attendance Allowance at or above the normal maximum rate with an Industrial Injuries Disablement Benefit,
  • Constant Attendance Allowance at the basic (full day) rate with a War Disablement Pension.
  • Personal Independence Payment (Daily Living Component at either Standard or enhanced rate).

You must be over 16 to claim Carer’s Allowance but there is no upper age limit. The person you care for can be anyone, including a relative. It can be paid to more than one person in a household, such as a couple caring for each other.

In some cases you may not be able to get Carer’s Allowance paid to you if you have another ‘over lapping’ benefit paid at the same or a higher amount; benefits that commonly overlap are State Pension. Maternity Allowance, contributory Employment and Support Allowance, contribution-based Jobseeker’s Allowance, Widows’ Benefits and Bereavement Benefits or Incapacity Benefit. However, you may instead be able to get extra money added to Income Support, income-based Jobseeker’s Allowance, income-related Employment and Support Allowance, Pension Credit, Housing Benefit and Council Tax Benefit.

Further information and to claim online go to:

Housing Benefit and Council Tax Reduction

If you’re on a low income, whether you’re working or not, and need financial help to pay all or part of your rent, you may be able to get Housing Benefit to help you cover the cost.

Housing Benefit is being gradually replaced by Universal Credit. If you have to make a claim for Universal Credit in your area then any help with housing costs that you are entitled to will be through the Housing Element of Universal Credit.

You can claim Housing Benefit with your claim for Employment and Support Allowance, Income Support or Jobseeker’s Allowance.

If you’re not claiming Pension Credit, Income Support, Employment and Support Allowance or Jobseeker’s Allowance you can get a form for Housing Benefit and Council Tax Support from your local council.

Universal Credit

Universal Credit is a new benefit for working age people that replaces a number of existing benefits and tax credits. It is designed to support people who have a low (or no) income with their basic living expenses and housing costs. 

If you already get benefits

Universal Credit will replace the following benefits:

  • Child Tax Credit
  • Housing Benefit
  • Income Support
  • Income-based Jobseeker’s Allowance (JSA)
  • Income-related Employment and Support Allowance (ESA)
  • Working Tax Credit

If you currently receive any of these benefits, you can’t claim Universal Credit at the same time.
Universal Credit is being introduced in stages across the UK. You don’t need to do anything until you hear from the Department for Work and Pensions (DWP) about moving to Universal Credit, unless you have a change in circumstances.

Other benefits that are not means-tested will continue to be paid separately such as Disability Living Allowance, Personal Independence Payment and Carer’s Allowance. Child Benefit will also continue to be paid separately.

Benefits based on National Insurance contributions, such as contribution-based Jobseeker’s Allowance and contributory Employment and Support Allowance, will not be replaced and will work alongside Universal Credit.

Benefits for those over the state pension age, such as the state pension and Pension Credit, will also not be replaced. Neither will Council Tax Reduction/Support so you should check to see if you can claim it in addition to Universal Credit. You need to apply for Universal Credit online.

You have to apply as a couple if you and your partner live together. You don’t need to be married.
After you apply, you must contact your local Jobcentre Plus within 7 days to make an appointment with a work coach.

You won’t get Universal Credit if you don’t attend the appointment.

Universal Credit helpline: Telephone: 0800 328 9344

Apply online at: to top…

My daughter’s needs have changed for the worse and I feel she now needs a higher rate DLA. How do I make this happen?

If your daughter’s condition has worsened you will need to contact the Disability & Carer’s Service on 0800 587 0912.

Your daughter’s existing award may be superseded to include a higher rate or a new component (from three months after their needs increased). 

When requesting a review of an existing award there is always a risk that the award can decrease as well as increase as both components of DLA can be re-examined.  It is therefore advisable to gather medical evidence that supports the deterioration in your daughter’s condition.back to top…

My child is 15, she receives DLA. Will she have to be interviewed when her benefits transfer to PIP?

Under the Mental Capacity Act 2005, decisions can be made on behalf of individuals aged 16 and over who lack the capacity to make such decisions for themselves, provided that this is in the person’s best interests.

As your daughter is 16 years old, health and social care professionals and other practitioners providing care and support to them will work on the basis that they are able to make decisions for themselves, unless this is shown not to be the case (Mental Capacity Act 2005, s1(2). If there are concerns that your daughter lacks capacity to make decisions, an assessment of her capacity should be undertaken in accordance with the Mental Capacity Act 2005.

Even if your daughter lacks the competence, or lacks the capacity to make a particular decision, she should be involved in decisions being made about her. The Mental Health Act Code 2015 states that ‘children and young people should always be kept as fully informed as possible’ and that they should receive clear and detailed information concerning their care and treatment, in an age appropriate format, and that their views, wishes and feelings should always be sought and their views taken seriously.

Her entitlements involve having her parents involved in the meeting when the local council ask her opinion on the placement. You can also request that an advocate be present if you feel that she would not be able to understand any of the questions asked.

Note that your family, and daughter’s preferences should not be sacrificed merely because they are in conflict with what a Council considers to be ‘best’ and where possible the Council should yield to the personal preferences of the family and disabled child.

You may also want to consider applying to be your daughter’s deputy for personal welfare if she lacks mental capacity (see below). back to top…

What is Universal Credit how do I apply? Does my daughter’s disability affect how much we get?

Universal credit is a new means-tested benefit that will eventually replace the following current means-tested benefits:

  • child tax credit;
  • housing benefit
  • income-related employment and support allowance
  • income-based jobseeker’s allowance
  • income support; and
  • working tax credit

Other benefits (eg personal independence payment) will remain largely unchanged by the new system.

Universal credit does not depend on your national insurance contributions and is not taxable.

You can claim universal credit if you are unable to work because of ill health or disability, if you are caring for someone, if you are looking for work or if you are working and your wages are low. You can claim it to cover just your needs if you are single, or those of your partner and/or children if you have a family.

Universal credit is being phased in over time and the current benefits will not disappear for some years.

Universal credit may entitle you to budgeting advances, free prescriptions and dental treatment, housing grants, free school meals and help with hospital fares.

To be eligible for universal credit, you must meet certain basic qualifying conditions. You must:

  • be aged 18 or over (or aged 16 or 17 in certain cases);
  • be under the qualifying age for pension credit (this is being raised from 60 to 66 between April 2010 and October 2020);
  • be in Great Britain
  • not be subject to immigration control;
  • not be in full-time education
  • have accepted a ‘claimant commitment’ (see below)

In addition, you (and your partner if you are making a ‘joint claim’ – see below) must not have capital of more than £16,000 and any earnings or income you have must not be too high for any universal credit to be paid.

You can claim Universal Credit online. If you need help, you can ring the universal credit helpline (0345 600 0723, textphone 0345 600 0743).

Joint claims

If you have a partner (including a same-sex partner), you must normally make a ‘joint claim’ for universal credit. In a joint claim, you and your partner must usually meet all the basic qualifying conditions above. However, you and your partner may still be entitled to universal credit as joint claimants if one of you is over pension credit qualifying age or in full-time education (as long as you both satisfy all the other basic qualifying conditions).

To qualify for universal credit, you may need to meet certain work-related conditions, known as ‘requirements‘. These are recorded in a ‘claimant commitment‘. If you fail to meet a work-related requirement, your universal credit may be reduced or ‘sanctioned‘. Limited hardship payments may be available if you get a sanction. In certain circumstances, none of the work-related requirements will apply to you (see below).

The amount of universal credit you are paid depends on your circumstances. It is worked out on a monthly basis by comparing your financial needs with your financial resources. If you are single, only your needs and resources are relevant. If you are claiming jointly with your partner, the needs and resources of both of you are relevant.

Set amounts for different financial needs are added together to arrive at a figure called your ‘maximum amount‘. This is the basic amount the law says you need to live on each month. From this figure amounts are deducted for any earnings and other income you receive (see below). The resulting amount will be your universal credit for that month. This may be restricted by the ‘benefit cap‘ (see section 8 below). 

The maximum amount

The maximum amount is made up of a ‘standard allowance‘ and ‘amounts‘, paid to cover different needs.

The standard allowance

This is the basic allowance, which is always included in your award. The amount you are entitled to depends on your age and whether you are claiming as a single person or jointly:

  • single claimant aged under 25 – £251.77
  • single claimant aged 25 or over – £317.82
  • joint claimants both aged under 25 – £395.20
  • joint claimants where either is aged 25 or over – £498.89

The amounts

The amounts are:

  • child amount
  • housing costs amount
  • work capability amount
  • carer amount; and
  • childcare costs amount.


If you have income other than earnings, such as other benefits, these will usually be taken into account in full, so that your universal credit is reduced pound for pound. Some benefits are ignored, for example disability living allowance, attendance allowance and personal independence payment.

Capital and savings

Universal credit has a ‘lower capital limit‘ and an ‘upper capital limit‘. If you have savings or capital over the upper limit of £16,000, you cannot get universal credit. This figure applies if you are claiming as a single claimant or as a couple. If you have savings or capital at or below the lower limit of £6,000, your universal credit is unaffected.

If your capital is between these limits, it is treated as generating a monthly income of £4.35 for each £250 (or part of £250) above the lower limit of £6,000. For instance, if you have capital of £6,300, it is treated as generating a monthly income of £8.70.

Universal credit amounts

The child amount

A ‘child amount‘ of £231.67 a month may be included in your award for each child or qualifying young person who normally lives with you.

A ‘qualifying young person‘ is someone aged 16 to 18 (or 19 in some cases) who has enrolled on (or been accepted for) a course of full-time non-advanced education or approved training, who is not getting employment and support allowance, jobseeker’s allowance, income support or universal credit themselves.

A two-child limit was introduced on 6 April 2017; you can only get a child amount for a third or subsequent child (or qualifying young person) if they were already included in your universal credit award on that date.

The child amount is paid at a higher rate of £277.08 a month for your eldest child or qualifying young person if they were already included in your universal credit award on 6 April 2017; otherwise the standard rate of £231.67 will apply to them.

Disabled child additions – An additional amount is included for each child or qualifying young person who is disabled. It is set at two different levels:

  • a higher rate – £372.30 a month for a child/qualifying young person who is entitled to the highest rate of the care component of disability living allowance (DLA), the enhanced rate of the daily living component of personal independence payment (PIP) or who is certified as severely sight impaired or blind by a consultant ophthalmologist; and
  • a lower rate – £126.11 for a child/young person who is entitled to any other rate of DLA or PIP.

The work capability amount

A ‘work capability amount’ of £318.76 a month (the higher rate) is included in your award if you have a ‘limited capability for work and work-related activity‘. This is determined by a ‘work capability assessment‘.

The work capability amount cannot always be included in your award immediately; a ‘waiting period‘ of three months usually applies first of all. During this period, you should undergo the work capability assessment.

Before 3 April 2017, if you were only found to have a ‘limited capability for work‘ at this assessment (and not a limited capability for work and work-related activity), a lower rate of the work capability amount of £126.11 could be included in your award. The lower rate does not normally apply to new claims for universal credit, but you may continue to receive it if it was included in your award on 3 April 2017.

The carer amount

A ‘carer amount‘ of £151.89 a month is included in your award if you have ‘regular and substantial caring responsibilities‘ for a severely disabled person. You are considered to have such responsibilities if you are eligible for carer’s allowance, although you do not have to actually claim that benefit.

You are not normally entitled to this amount as well as the work capability amount (see above) if you would otherwise be eligible for both; only the highest paid amount will be included in your award. However, if you have a ‘limited capability for work and work-related activity’ and your partner is a carer, both amounts could be payable.

The childcare costs amount

This will be included in your award if you pay for registered child care in order to stay in work. There is no set number of hours you need to work to get this amount. You will get 85% of your relevant childcare costs met, up to a maximum amount of:

  • £646.35 for one child; and
  • £1108.04 for two or more children

If you are claiming jointly, your partner must also be in paid work, unless they are unable to look after the child because they:

  1. have a limited capability for work;
  2. have  regular and substantial caring responsibilities for a severely disabled person; or
  3. are temporarily away from home (ie are in prison, hospital or a care home).

Generally, the childcare must be provided by someone who is registered for child care or an equivalent. It does not include care provided by a close relative of the child wholly or mainly in the child’s home or care provided by a foster parent.

The housing costs amount

A ‘housing costs amount‘ may be included in your award if you pay rent or have a mortgage. The amount can also cover some service charges.


If you own your home, the housing costs amount may cover mortgage interest on loans secured on your property. There is normally a ceiling of £200,000 on the amount of loan that can be covered; this does not apply in the case of any loan taken out for the purpose of adapting your property to the needs of a disabled person.

There will normally be a ‘qualifying period‘ of nine months before the amount can be included in your universal credit award. You will not be entitled to the amount if you are in paid work.

Private tenants

If you are a private tenant, your housing costs amount will not necessarily cover all your rent but will be restricted to a set amount: the ‘cap rent’. This cap rent will depend on where your home is situated and the number of rooms you are deemed to need.

Deductions will be made from the amount if you have non-dependants living with you. A non-dependant is someone who lives with you who is not your partner, a child or young person you are responsible for, a joint tenant, boarder, lodger or sub-tenant. Typically, an adult son or daughter will be considered to be a non-dependant. The rules are similar to those in the current housing benefit scheme.

Social housing tenants

If you are renting social housing (from your local authority or from a housing association), your housing costs amount may be reduced if the property you rent is considered to be under occupied: the ‘bedroom tax‘. Deductions will be made from the amount if you have non-dependants living with you (see above).

If you are in ‘specified accommodation‘ (eg a refuge if you are fleeing domestic violence or accommodation where care, support or supervision is provided to you), your housing support will continue to be met through housing benefit rather than universal credit

Discretionary housing payments

You may be able to get ‘discretionary housing payments‘ (DHPs) if your universal credit does not cover all your housing costs and your local authority accepts that you require some further financial assistance.

You must claim a DHP from your local authority; most local authorities will have a form on which to claim.

Normally, your universal credit is paid in arrears as a single payment each month. If you have a partner; you can choose who receives the payment. Alternative payment arrangements (eg bi-monthly payments) would only be made if the DWP considers that you could not manage with a single monthly payment; such arrangements would usually only be made for a temporary period.
If all the work-related requirements apply to you (see section 3 above), you will usually have to wait for seven days (the ‘waiting period‘) before you are eligible to be paid universal credit.  

For more information on how Universal Credit is calculated please go to:

You can also do an online calculation of your likely entitlement to Universal Credit.  Benefit Calculators can be found at:

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Further advice on these matters

For further advice on these matters please contact:

Disability Law Service:

Telephone: 020 7791 9800



Or write to us at: The Foundry, 17 Oval Way, London, SE11 5RR

© Disability Law Service 2018.  Registered Charity Number 280805, Company Registration Number 1408520