If you have Down’s syndrome and want to find work opportunities, register on to the WorkFit programme below.

Work means different things to different people. Some people want a paid job; some people want to do voluntary or unpaid work.

WorkFit staff will listen to your hopes and ambitions and can help to you to be more independent, get new skills, meet new people, earn money, and feel proud of yourself.

See below to find more information on your options.

Ready to look for work? Register!


Benefits Series

Benefits and Work

Date: October 2018 | Information updated annually

Please see our website for up-to-date information: www.downs-syndrome.org.uk

If you have concerns, please ring the DSA’s Benefits Adviser: Helen Wild

Mon & Thurs 10am-4pm Tues & Weds 10am-12.30pm| Telephone: 0333 1212 300 Helen.wild@downs-syndrome.org.uk

Generally speaking, if you undertake any work, whether paid or not, you are treated as being capable of work.

Some types of work are exempt. This type of work is called Permitted Work.

 Please contact DWP first to make sure the work can be classed as supported/permitted work.

This is intended as a brief guide for those currently in receipt of;

  • Employment and Support Allowance (ESA)
  • Incapacity Benefit (IB)
  • Severe Disablement Allowance (SDA)
  • Income Support (IS)

Universal Credit, which has recently been introduced, replaces working age means tested benefits which includes those listed above. It has different rules with no permitted work allowance and it takes earnings into account. It is being rolled out nationwide but you may still able to apply for ESA in some areas. This guide does not apply to those receiving Universal Credit.

Doing any kind of permitted work will not affect any PIP or Disability Living Allowance you receive however starting a job may suggest to the DWP that your care and mobility needs have changed so there is a chance they may view it as a ‘change of circumstances’ and review your award.

In actual fact you may require more help if you move into work.

There are three different kinds of permitted work.

  1. Permitted Work – lower limit

 You are allowed to earn up to £20 per week before it affects your benefit (if you are on IS you need to qualify for the disability premium). There is no limit to how long you can do this work.

  1. Permitted Work – higher Limit

From April 2018, you are able to earn up to £125.50 weekly. This limit is usually increased each October. Hours are limited to less than 16.

If you have been placed in the support group of ESA or you claim Incapacity benefit and are exempt from the personal capability assessment (PCA), you are not limited with the amount of time you are employed but you must keep your hours of work under16 per week.

Earnings up-to £125.50 from permitted work will not affect benefit payment for those receiving ESA, IB or SDA.

  • Earnings above £20 will affect those on Income Support and those receiving income support top ups with their IB or SDA.
  1. Supported Permitted Work

Supported permitted work is work carried out under the supervision of a person in a voluntary or local authority organisation who arranges a work opportunity for disabled people. The person finding the employment has to provide face to face or telephone support.

Earnings can be no more than £125.50 per week, however you are able to work more than 16 hours.

You can undertake supported permitted work if you are receiving Employment & Support Allowance (ESA) Incapacity Benefit (IB) and Severe Disablement Allowance (SDA) without it affecting your benefit.

The WorkFit project falls under the definition of supported permitted work. WorkFit is a bespoke project which looks to develop roles/ work opportunities for people with Down’s syndrome. These opportunities can be volunteering, work placements, apprenticeships and paid work.

  • earnings from supported permitted work will not affect your benefit payment of ESA, IB or SDA (as long as they remain below £125.50 per week)
  • earnings above £20 will affect those on Income Support and those receiving income support top ups with their IB or SDA.

It is best to check before embarking on a work placement. Those currently in receipt of income support should soon be assessed for Employment and Support Allowance.

Permitted work and Housing Benefit

If you receive ESA IB or SDA and receive housing benefit you can keep all of your permitted work earnings. The earnings are disregarded for housing benefit calculations.

WorkFit involvement

It is always a good idea to inform the Department for Work and Pensions (DWP) if you intend to start any work. If you are starting work via the WorkFit programme you must inform the DWP. The DWP will then send out a PW1 form which needs to be completed and signed by the candidate.

There is a section on the form which the DSA needs to sign and confirm that WorkFit found the placement and will be supporting it. Please get in contact with the DSA for this to be done.

The DWP will get in contact by letter confirming they have received the form and that the work is classified as Supported Permitted Work.

The candidate can start their employment before this confirmation letter comes through.

For those who want to earn more or work more hours

For those on permitted work intending to work for more than 16 hours in paid employment, or in those in supported permitted work earning over £125.50 per week, your ESA will have to stop. In some areas of the country you may have to claim Universal Credit and in others you may have to claim Working Tax Credit. Call us if you are not sure about what to do.

Voluntary Work

If you receive SDA or IB you can do voluntary work for anyone other than a close relative. For those in receipt of ESA or IS, you are allowed to do voluntary work for anyone other than a relative. There is no limit on the number of hours you can volunteer.

Permitted Work and Universal Credit

In a few areas of the country some people may have to claim Universal credit (UC) rather than ESA.

Eventually everyone on means tested ESA will be moved over to Universal Credit and nobody will have an option to stay on ESA. There will be transitional protection regulations to make sure that existing claimants are not worse off moving from ESA to Universal Credit.

There are no permitted work rules under Universal Credit and therefore no restrictions on the hours that you can work.

In the Universal Credit calculation there is a ‘work allowance’ which allows people who have been assessed as having a ‘limited capability for work to keep more of the money they earn before it affects their benefit.

  • The ‘Higher Work Allowance’ allows earnings up-to £409 per month. It applies to those who do not receive a housing cost element in their calculation
  • The ‘Lower Work Allowance’ allows earnings up-to £198 per month. It applies to those who receive a housing cost element in their Universal Credit.

Please note that people migrated from ESA onto UC between June 2018 – March 2021 will have transitional protection to make sure that they are not worse off. Those who would get less UC than their current benefit will receive a transitional allowance to make up the difference.

Access to Work (ATW) Scheme – help when you are in work:

This scheme provides advice to help overcome difficulties in the work place. It can also give grants toward any extra employment cost your employer may incur as a result of your disability.

  • It is only available to those in paid employment.
  • You can get up to 100% of approved fares to work if you are unable to use public transport. It also can cover the cost of a support worker to help you at the workplace.
  • There is no limit on the number of hours a person must work to receive ATW.
  • The grant is allocated for that particular support for a period of time. Minimum period is 1 year and the maximum period is 5 years. If that time has elapsed and there is still support needed, they would need to re-apply and re-assessed.

From April 2018, people will be able to claim up to £57,200 annually to help pay for additional support that they may need in the workplace – approximately £15,000 more than the current cap of £42,100.

You can contact access to work at:

Telephone: 0800 121 7479

Textphone: 0800 121 7579

To be eligible for the ATW grant you must be:

  • In paid employment or self-employment, or with a confirmed start date, and:
  • have a disability or health condition which affects your ability to work
  • be aged 16 or over
  • live and work in England, Scotland or Wales

An application form will be completed over the phone. This can be done by a parent or carer with the person’s consent.

The following questions will be asked:

  • Name of the candidate
  • NI number
  • Home address
  • Disability description
  • How much do they earn (must be national minimum wage-you can find his on the HMRC website)
  • What is their job
  • Who is their employer: name and contact details
  • How many hours do they work
  • What support do they require
  • Whether the candidates benefits will continue through employment

The Jobcentre Plus will send the form to the home address to be signed and will need to be sent back to the Jobcentre Plus.

ATW Advisor will be allocated within 24 hours. They will be in contact to go through the application and do an assessment either over the phone or at the place of work. At this stage you can ask the advisor how long the process will take.

After the assessment is completed the advisor will put forward the next steps.

As ATW is a grant it should not affect the means tested element on benefits.

Time period for the whole process is unknown and will vary with each individual case.

What to do if you are no longer working?

If you find that your son or daughter can no longer work, let the benefits office know. This will not affect their benefit if the work they are doing is permitted work. However if they receive  Tax Credits you must let the tax office know that you are no longer working as you will have to claim ESA/UC instead .There are rules enabling you to return to the existing benefit and rate if you reclaim ESA within 12 weeks or within 104 weeks and have had limited capability for work for more than 13 weeks. Universal Credit should be adjusted accordingly but you must tell them about your circumstances.

For those whose previous benefit was IB or SDA, different rules exist and you may have to make a fresh claim for ESA. You should seek advice before considering full time work.

Personal Independence Payment

PIP – is a tax free benefit that can be paid to those of working age.

It replaced DLA (also tax free and not means rested )for people aged 16 – 65. It is not means tested and can be paid regardless of your income, savings or National Insurance contribution record.

You can get PIP even if you are working or studying. Some of our members age 16 or over may not yet have been moved over to PIP from DLA. Do not worry, DWP will contact you about this.

Like DLA. getting PIP does not reduce other benefits you receive, it may even increase them as it enables you to qualify for extra premiums or amounts in means rested benefits.

Please see the information at https://www.downs-syndrome.org.uk/for-families-and-carers/benefits-and-financial-help/detailed-benefit-guides/personal-independence-payment/

Click here to read an easy read guide to PIP

Frequently Asked Questions

My son has not yet claimed ESA and we are still getting Child Tax Credit and Child Benefit for him, he has a part time paid job at weekend, does this affect us?

Your child’s wage will not be taken into account when calculating your award of Tax Credits, their income is ignored.

My child claims ESA and has been put into the support group, does this mean he cannot work?

Your child can stay on ESA and undertake permitted work if he wishes. He can earn up to £125.50 per week after tax and N.I. contributions.

As he has been placed in the support group he can do either;

Supported permitted work for as many hours as he wants as long as he earns no more than £125.50 per week or;

Permitted work with the higher limit for an unlimited period, as long as his earnings are no more than £125.50 per week and he works under 16 hours per week.

My daughter claims ESA and has been put in the Work related activity group how will permitted work rules affect her?

 Your daughter can stay on ESA and she has 2 options:

  • Permitted Work – higher limit: She can earn up to £125.50 per week.
  • Supported Permitted Work. This is supervised work that has been arranged by a public or local authority or a voluntary or community organisation providing or finding work for people with disabilities. Supported permitted work has no restrictions on the hours or weeks worked (so you can work over 16 hours) however you must not earn more than £125.50 per week.

 My son receives income support, is he able to earn £125.50 under the permitted work rules?

For those people receiving IS, the rules are different. He can only earn £20 per week before it affects his benefit (as long as he qualifies for the disability premium). Anything over £20 will be deducted from his benefit. He can work voluntarily for anyone other than a relative and there are no limits to the number of hours he can work. He is allowed permitted expenses such as travel to work, meals and equipment etc. You need to see when he will be migrated on to Employment and Support Allowance.

My daughter has been given the opportunity to increase her hours and as a result her wage will increase to £130 per week. She is currently on ESA.

 Your daughter will earn too much for the permitted work rules and may therefore have to claim Universal Credit.

Universal Credit is relatively new and replaces a number of income based working age benefits. It is a top up benefit providing extra income for low paid work. It can be paid to people with a disability as long as they are age 16 or over and they have a physical or mental disability that puts them at a disadvantage in getting a job. You qualify as disabled for Universal Credit if you receive DLA or PIP at any rate or component and you have been assessed as having a limited capability for work.