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Downs Syndrome Benefits and Work

18.03.19

By Jayne Knights

To coincide with Down’s Syndrome Awareness Week 18th – 24th March, this blog concentrates its benefits beady eye on how people with Down’s Syndrome can work without sabotaging or losing any benefits they receive.

The benefit rules, of course, apply to anyone, people with Down’s Syndrome are just as likely to be in part-time work and on benefits as anyone else with a learning disability

We’ve talked a lot about benefits such as Employment and Support Allowance (ESA) in our blogs, but you might not be so familiar with how benefits collide with work. Getting ESA can mean people with disabilities can combine work and benefits in a really positive way – and it’s called Permitted Work.

This basically allows you to try out work within certain limits, and still remain entitled to ESA (and other benefits, too, but we’re concentrating on ESA here). As long as you stick to the rules, and work within the set limits, your earnings will not affect any other benefits you receive, including housing benefit.

But you need to be on the ball, and make sure you know how the permitted work rules apply to you, your cared for person or family member. You also need to know that Universal Credit operates differently (we cover this towards the end of this blog).  

Permitted Work rules

The basic rule is that if you are doing Permitted Work, then it’s because you have a condition or disability, such as Down’s Syndrome, which means you don’t have to be available for ordinary full-time work. People on ESA, who have been found to have Limited Capability for Work (LCW) or Limited Capability for Work-Related Activity (LCWRA), are the most likely group to be doing Permitted Work.

There are, as always, some rules governing this, and different types of Permitted Work.

The entry-level type is called Lower Limit Permitted Work. In this category, you can earn up to £20 a week without any effect on any benefit, and you can do this indefinitely. Because of minimum wage rules though, this work is very restricted in terms of hours. Basically, you can only do about two.

The next category is called Higher Limit Permitted Work. In this category, you can earn up to £125.50 a week (going up to £131.50 in April 2019). You must also work less than 16 hours a week, and you can do this indefinitely, as long as you continue to have LCW or LCWRA. The hours and earnings rules are strict, so it’s best to ensure you are well under these limits every week.

The final category is called Supported Permitted Work, and this is for people who are working as part of a treatment programme, or who are working in a supervised setting which specialises in opportunities for disabled people. Again, the earnings limit is £125.50 a week, and you can do it indefinitely as long as you are still viewed as unable to work.

Plus points of Permitted Work:

  • Once the Department for Work and Pensions (DWP) has agreed that your work is Permitted Work, you can enjoy a significant increase in your weekly income without your benefits being affected.
  • You can give work a try, test your abilities and find the kind of work that suits you.

Warnings about Permitted Work:

  • You need to be careful to find the kind of work which the DWP will agree is actually Permitted Work – the work you do needs to be with a sympathetic employer, who is aware and supportive of your disabilities and where there is flexibility regarding illness and absence. Earning right up to the limit, in an advertisable job, could make the DWP think that you are now ‘fit for work’, and they could decide to review your entitlement to ESA.
  • Some of the most successful Permitted Work placements are in settings such as day centres for people with disabilities, where the users of the centre work there as well. I have seen this work very positively in Sussex, where the service users of a day centre, many of whom have Downs Syndrome, work in the cafe, reception and office. They are paid within the limits for Permitted Work, but it is clear to DWP that the work is flexible and fits the person’s condition.

You must contact DWP if you are contemplating doing Permitted Work. There is specific information, and a form to fill in, on the DWP website here:

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/714727/permitted-work-form-pw1.pdf

Additional information can also be found from the excellent Disability Rights UK Factsheet: https://www.disabilityrightsuk.org/work-people-living-disability-or-health-conditions

Permitted Work and Universal Credit

There is no direct equivalent in Universal Credit of Permitted Work, which is a shame, but not the end of the world.

Anyone on Univeral Credit who has LCW or LCWRA (in other words, has been deemed not able to work) might, if they approach it correctly, be able to do some work and have quite a lot of their earnings disregarded. The way that the earnings disregard works is more generous from this April, but is only for people with LCW, LCWRA, or children.

The issue remains, however, that notifying the DWP that you are doing any work could potentially be a trigger for the DWP, to the extent that your LCW or LCWRA status is reviewed. This means it is very important to find the right kind of work, as we have explored above.

From April, the earnings disregard goes up. People who have LCW or LCWRA, who have no liability for housing costs (e.g. they are living with their family), will be able to earn up to £503 a month (equivalent to £116 a week). After the earnings disregard (it’s called a ‘work allowance’ in UC) is applied, a 63% taper is then applied to make the earnings figure even lower.

Real life example

Emily has Down’s Syndrome and lives at home, she receives UC and PIP. She has LCWRA (the equivalent of the ESA Support Group). Her work has been agreed with DWP, and she earns £100 a week, equivalent to £433 a month. As her earnings are under the work allowance threshold of £503, she keeps it all, making it almost as good an arrangement as Permitted Work.

Her earnings then increase to £150 a week, equivalent to £650 a month.

£650 – £503 work allowance = £147 x 63% = £92.61

This means £92.61 is deducted from her UC each month.

Emily would need to be careful that DWP did not think her LCW or LCWRA status needs to be reviewed. When she contacts the DWP to tell them about the work it’s important that DWP understands that just because she doing some work, she still satisfies all the descriptors and points that led to her being assessed as having LCW or LCWRA in the first place. It’s really important to stress this.

The earnings disregard for people who are in ordinary tenancies is lower, at £287 per month from April 2019.

There are some excellent online calculators which can help you work this out for your own circumstances:

www.turn2us.org.uk

www.policyinpractice.co.uk

www.entitledto.co.uk

As we have seen, there is no reason why an individual with Down’s Syndrome (indeed anyone with a disability or illness) can’t try out work or do fulfilling work, but it’s essential that they understand the rules and make sure it’s all thought through properly to avoid the risk of negatively impacting important benefits.

At Renaissance Legal, we can check your benefits, help you prepare claims or represent you at appeals. Contact us for a confidential discussion about your personal circumstances.

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