1. Changes to benefits: what do they really mean for people with a learning disability and their families?
April 2013

2. What I am going to talk about
New things to know about the Employment and Support Allowance (ESA)
The new Personal Independence Payment (PIP), which is slowly replacing DLA
Housing changes (including the ‘bedroom tax’)
Universal Credit and the replacement of means-tested benefits
The presentation aims to cover 4 key areas:
To give an update on the employment and support allowance. The move to ESA started in 2008, but still continues, and the welfare reform act 2012 introduced some new rules.
PIP replaces Disability Living Allowance, beginning in April in a number of pilot areas.
A number of recent housing changes have recently been implemented. This presentation will cover the new size criteria for social housing (known as the bedroom tax), the benefit cap and council tax benefit changes.
Finally, UC is replacing most means-tested benefits. The roll-out began in a number of control areas in April.

3. What is ESA?
ESA is gradually replacing Incapacity Benefit, Income Support (because of a disability), and Severe Disability Allowance.
1.5 million people on these benefits are being re-assessed to see if they can get ESA. This finishes in March 2014.
New assessment for ESA – the Work Capability Assessment (WCA).
Most people expected to have a face to face assessment with a healthcare professional.
Some people getting ESA will have to do things to prepare for work. Their benefits can be affected if they don’t.
ESA introduced in A benefit for working age adults who cannot work because of sickness or disability.
It was introduced to replace Incapacity Benefit, Income support (claimed for disability/ health related reasons) and severe disability allowance, with the view that people should not be ‘abandoned’ to a life on sickness benefits, but given the appropriate support to move towards employment (where appropriate).
The process of reassessment is still underway, and will continue until March This is essentially the process by which EXISTING IB, IS and SDA claimants are being moved across to ESA. In total, 1.5 million people are being reassessed. Thus, if anyone in the audience gets one of these benefits or supports someone who does, at some point before March 2014, they will be reassessed for ESA.
One of the biggest changes when ESA was introduced was the new assessment that was introduced alongside it – the Work Capability Assessment (WCA). This assessment is delivered by Atos Healthcare on behalf of the Department for Work and Pensions (an organisation which many people will have heard about in the media).
Most people being assessed for ESA are expected to have a face to face assessment with a healthcare professional. There is more expectation on many claimants who get ESA in relation to work preparation activities, as well as terms of attending the face to face assessment in the first instance.
There will be some instances where people won’t have to have a face to face assessment where it is obvious from the paper work returned, that the individual would be in the support group. In theory this should apply to people with PMLD and more severe learning disabilities.
If someone does not attend their dace to face assessment without ‘good reason’ their benefit can be affected.

4. What do ESA claimants have to do?
There are two parts to ESA – the work-related activity group and the support group.
People in the support group don’t have to do things to prepare for work, as they have a severe disability or illness and it would not be fair to expect them to do this.
Those in the work-related activity group will have to:
Sign up to a claimant commitment (this is new!)
Have some work-focused interviews
Prepare for work – for example, by doing some work experience.
The Government has said that people should only be asked to do things that are “reasonable” and that take into account that person’s situation.”
Failure to take part can result in benefit being cut- a ‘sanction’
There have been a few recent changes around conditions for ESA claimants –i.e. what is required of them in exchange for their ESA money.
However, it has always been – and remains the case – that people in the support group of ESA have no work related conditions placed upon them.
For those in the work-related activity group, it has always been the case that claimants can be required to attend work focused interviews with an employment advisor to talk about work options. Claimants can also be required to complete work experience or undertake the Government’s Work Programme.
The recent Welfare reform Act 2012 has added something called the ‘claimant commitment’ to the rules for ESA. This is basically a record of a claimant’s individual responsibilities in relation to their benefit. It will include details of the ‘work-related requirements’ the claimant has to undertake etc.
In theory, all of the thing imposed on claimants should be ‘reasonable’ based on individual circumstance and situation.
Failure to take part in work related requirements expected of people can lead to someone’s benefit being cut or stopped. The law states that benefit should not be cut if people can show ‘good reason’ for not taking part in something – this should take into account someone’s learning disability and whether or not they have understood what is expected of someone.

5. Other recent changes to ESA
Time-limiting of contributory ESA to one year – started in April This affects 700,000 people.
Contributory ESA ‘youth entitlement’ stopped, where young disabled people could access non-means tested benefits
Income-related ESA stopped, with the introduction of Universal Credit.
An individual gets contributory ESA if they have paid national insurance contributions, and income-related ESA if they haven’t. IR ESA takes into account someone’s total income from savings, assets etc.
Time-limiting contributory ESA
Some PWLD will be on contributory even if they haven’t worked because of benefit rules that allow people who are deemed in youth to be unlikely to ever work – known as ‘youth entitlement’.
Through the recent Welfare Reform Act, the Govt has stopped this ‘youth entitlement’.
The have also introduced a time limit for those people in the WRAG of ESA, if they receive contributory ESA.
They have said that ESA is a temporary benefit and that they want to bring it more in line with Jobseekers Allowance.
This kicked in as early as April 2012, while the legislation was still being debated, because of the fact that ESA rolled out in 2008, and therefore some people had already been in receipt of it for a year.
BUT: people may be eligible for income-related ESA instead. We think this will apply to many people with a learning disability.
700,000 people affected. 60% will be eligible for income-related ESA but half of these will get a reduced rate.
[*ESA IR conditions – e.g. no more that £16 capital, partner should not be working for more than 24 hours a week].
Abolition of income-related ESA
Just to add confusion to all of this, the introduction of Universal Credit means that income-related ESA is effectively abolished. However, the rules as I’ve described apply similarly under UC (which we come on to), and the same WCA assessment is used to determine eligibility for the component of UC that looks at whether someone with a disability has limited capability or not.

6. Top tips!
When you complete the form to apply for ESA, provide as much information as you can.
Disabled people can take someone to the assessment to support them.
Get people who know you well – (like a support worker, care manager, or your doctor) to provide information.
If you don’t agree with the decision after the assessment you can ask for it to be looked at again. You can ask for a copy of the report from the assessment.
‘Conditions’ on people getting ESA must be reasonable and include things like being avaialble for assessments, interviews or activity.
Tell Mencap’s campaigns team about your experiences – we need these to help us campaign on this issue.
Alongside the claim form, you should send in any additional information from someone who knows the individual well – this can be ANYONE. It does not have to be a medical professional. If you don’t’ have time to get it to send in with the ESA 50 form, send it in follow up or take it with you to the face to face assessment.
You can request a copy of the ESA 85 following a face to face assessment. This can help to explain why a decision has been made.

7. What is PIP?
DLA is being replaced with the Personal Independence Payment or PIP (ages 16-64) to help with “extra costs” people face because of a disability.
The Government has said that it spends too much money on DLA and that DLA is over 20 years old so needs updating
There will be some big differences between DLA and PIP. For example:
Some disabled people get DLA automatically. This won’t be the same for PIP. Everyone will be assessed.
Some disabled people get given DLA for life. This won’t be the same for PIP. No one will get “life time” awards.
Some things will be the same as DLA. For example:
Like DLA, PIP will still be a non-means tested benefit. This means it doesn’t matter how much money you have or if you have a job or not.
There is a new assessment for PIP. Most people are expected to have a face to face assessment with a healthcare professional.
Government focusing on those with the “greatest need”.
When the Government first announced that it wanted to replace DLA with PIP for working age adults, it said this was for two reasons:
Spend unsustainable and needed reining in AND
That it is out of date, with a need to better reflect today's understanding of disability, and not efficient –not checking on whether people’s conditions have changed.
As a result, the Government have got rid of various rules that existed under DLA – there will be no automatic entitlements to the benefit anymore and no life time awards any more. Everyone’s awards will be periodically reviewed. Many PWLD get life time awards, so this is a significant departure in approach.
PIP will remains non means tested – so, open to everyone who meets the criteria. Makes no difference if you are working or not or how much money you have.
In order to rein in spend, the Government has focused PIP on ‘those with the greatest needs’.
PIP started for new claims in a number of pilot areas in April This will roll-out for new claims in June 2013.
From October 2013, some existing DLA claimants will start to be invited to make a claim for PIP, including children turning 16 and those with a fixed term award coming to an end.
From October 2015 a number of other existing DLA claimants will begin to be invited to make a claim for PIP, including those with life time awards. Many PWLD have life time awards, and so for this group there is still some time off from this change taking place.
The Government has said that reassessments for PIP are likely to go on until 2018.

8. Before and after… DLA to PIP
CARE component
MOBILITY component
DAILY LIVING component
MOBILITY component
Highest rate £79
Higher rate £55
Enhanced rate £79
Enhanced rate £55
Middle rate £53
Lower rate £21
Standard rate £53
Standard rate £21
This shows you what DLA is like now and what PIP is like.
Instead of a care component under DLA, there is a ‘daily living’ component under PIP, which aims to look at someone’s ability to carry out key activities necessary to participate in daily life.
There remains a mobility component based on a person's ability to get around.
To simplify PIP, there are just 2 rates of benefit for each component of PIP. The ER stays payable at the same rate as the HR in DLA. The standard rate will be the equivalent of the MR under DLA care and the low rate under DLA mobility.
Lowest rate £21

9. When will I get PIP?
PIP started for new people making a claim this April, but this was only in a a few areas.
This week, new people will only be able to make a claim for PIP across the rest of the country.
From October 2013, some DLA claimants will be asked if they want to make a claim for PIP instead. For example, those turning 16.
From October 2015 – March 2018, remaining DLA claimants will be reassessed for PIP.
The new assessment for PIP:
It is divided into two parts – one looking at a number of ‘daily living’ activities, one looking at a number of activities exploring mobility and getting around.
Like the WCA, each activity has a set of descriptors.
Points are awarded for each activity that you cannot do based on whether you fit a descriptor within those activities.
Scores are added up across the range of activities within the daily living part and then the mobility part.
A score of 8 points in either the DL or mobility part = eligibility for the standard rate of PIP DL or PIP
A score of 12 points in either the DL or mobility part = eligibility for the enhanced rate of PIP DL or PIP

10. The impact on people with a learning disability and their families?
The Government estimates 600,000 fewer people will get PIP by 2018, compared to DLA.
We are concerned that if people miss out on support they will live less independent lives
It is hard to know how the assessment will work for people with a learning disability
Disabled people with ‘lower level needs’ may be the most likely to miss out on support
When people lose DLA they may also lose ‘passported’ benefits and support– for example, things like Blue Badge, Motability and Carer’s Allowance
The Government’s own impact assessment has stated that 600,000 fewer people will get PIP than under DLA by This is incredibly worrying.
The Govt. always said that it wanted an assessment that took better account of people with a learning disability. There are certainly aspects of the assessment that a particularly relevant to people with a learning disability - for example, the activities looking at understanding and managing money, but it is difficult to say how it will work across the board.
A focus on those with the “greatest need” during development of the assessment and benefit implied that it is those people on the lower rates of DLA who are more likely to lose out. Govt. estimates predict that of those being reassessed from DLA, 510k will get an INCREASED AWARD. However, the same amount will see their AWARD DECREASED and 450,000 will get NO AWARD.
Our particular concern therefore has been around those people with more moderate learning disabilities and whether they will accumulate enough points to reach the threshold for eligibility.
We also want to ensure that the assessment process works as well as it can for pwld – e.g. that they are properly supported, that people are given enough time to make their claim, that the healthcare professionals undertaking the assessment understand learning disability etc.
The DWP has contracted out the assessment process to two different organisations – Atos and Capita. They are responsible for assessments in different parts of the country, and are taking quite different approaches. E.g. Atos have estimated home visit assessments to be 10%. Capita are aiming for about 60% of assessments to take part in the claimant’s home.
FINALLY… DLA acts as a gateway to other support and benefits – things like blue badge eligibility, the motability scheme and carer’s allowance. Although the Government has tried to mirror rules in PIP, the fact that people may not be eligible fpr PIP or can potentially get a different rate, will inevitably have an impact. For example,
by 2015…. Reaseessment outcomes up to that point will lead to 10,000 fewer people eligible for Carer’s Allowance. 10

11. Top tips – what can you do?
Remember!: unlike with ESA, claimants of DLA will not automatically be put forward for PIP. They will instead be invited to apply.
When competing the main claim form, provide as much information as you can.
Take someone with you to the assessment to support you.
Get people who know you well – (like a support worker, care manager, or your doctor) to provide information about you.
Fill in Mencap’s survey on the move from DLA to PIP. Tell us if you think you’ll still get PIP.
Tell Mencap’s campaigns team about your experiences – we need these to help us campaign on this issue.

12. New under-occupancy rules in social housing- the ‘bedroom tax’
April 2013: People who claim Housing Benefit face new rules about how many bedrooms they can have:
One bedroom for each person or couple.
Two children under 16 of same gender expected to share a bedroom
Two children under 10 regardless of their gender expected to share
Exemptions to those rules:
Where are disabled person has a need for an overnight carer and can prove this, and receives middle or higher rate care DLA, AA or PIP, they will be entitled to an additional bedroom
Where a severely disabled child requires a separate bedroom, new guidance is making an exemption for them
From April this year, the rules around housing benefit for those living in a home rented from a housing association or council have been changed to closer reflect those for people renting from a private landlord.
Instead of people receiving the full amount of the rent, or the full percentage they are entitled to after taking their income into account, they now have an entitlement based on the renter and his/ her wider benefit unit (household). The wider benefit unit are the number people the renter is ‘responsible’ for paying rent for.
This means the rules have become much stricter; those deemed to be ‘under-occupying’ will have to either pay some of the rent themselves (in some cases this will mean they get no housing benefit at all anymore, for example where they only received a certain element of it), or try to find a smaller home.
The government has made some concessions for those who require an overnight carer and disabled children, who have a proven need for a separate bedroom, where they would normally share. The latter is only in guidance at the moment, so changes are still likely to be forthcoming.
If you need an overnight carer and you want to access housing benefit for them to stay, then there are certain conditions you need to meet:
You need to be in receipt of middle/ higher rate DLA (Care), PIP or AA
The carer cannot live at the property
They need to stay at a regular basis (although this according to the DWP can be for example once every 2 months etc)
For children needing an extra bedroom, the following currently is required:
The child is likely to be in receipt of DLA
The nature and frequency of night disturbances should be taken into account by local authorities assessing this, not just the severity of the disability
It is a matter of judgement on behalf of the local authority
Slightly different rules apply when you part-own a property, which may be the case for some people with a learning disability, who have bought a shared ownership property. No deductions on the rental element in these cases are made.

13. How will it affect people?
Those with 1 or more ‘spare’ bedrooms will see their Housing Benefit cut.
They will have to pay more or move to a smaller property.
The Housing Benefit reductions are:
14% for under-occupancy by 1 bedroom
25% for under-occupancy by 2 bedrooms or more
An average of £14 a week
Discretionary Housing Payment is meant to help, but it is very limited- £30m for people in adapted properties
Those considered to have 1 spare bedroom, will have 14% of their housing benefit deducted, while those under-occupying by 2 or more bedrooms will have 25% deducted. On average this means that those affected will lose about £14 per week.
Local authorities have access to something called the Discretionary Housing Payment fund. This fund is aimed at people struggling to meet their commitments in terms of rent or deposits. The local authority can decide how this is being spent. In addition to putting additional money into the pot to moderate the impact of this policy more broadly, the Government has made £30million additional pounds available to go into the Discretionary Housing Payment fund specifically for those living in adapted properties. This came after they had to acknowledge that it made no sense for some people to move from highly adapted homes. However, the DHP is very limited and unlikely to pay for every disabled person in need.

14. The impact on people with a learning disability and their families?
Government equality impact assessment – 420,000 people with a disability to be affected.
People living in ‘exempt accommodation’ will not be affected.
Mencap and other organisations working on this recently won a concession from the Government – where a severely disabled child needing a separate bedroom they are now entitled to this under new guidance
BUT still an issue for couples where one or both people have a disability and some families who include a household member with a disability
Individuals and families may be forced to move house, may lose their support networks and facilities they need.
The majority of people who will be affected by the new under-occupancy rules are people with a disability. Although some exemptions have been made for certain circumstances, such as for disabled children or those needing an overnight carer, 2/3 of all affected are people with a disability.
The new rules do not take account disabled adults, for example, who may a separate bedroom to their partner, as they have medical equipment and other identified needs for a separate place. It also does not take account of the fact that disabled people may have had a house allocated to them, often in the case of people with a learning disability, after many years of trying to find a suitable home, and that no smaller property may be available in the locality.
The one exemption that is important in the context of this, is the exemption for those living in ‘exempt accommodation’. This is a system, that allows in certain cases a landlord to charge higher rents as a result of providing a more specialist home (this could be that it has more bedrooms than an individual would normally be entitled to etc). Those homes would not be affected.
Where people are affected, this may mean that they may have to move out of the local authority area to find a suitable home, which brings its own problems with it around the portability of social care arrangements etc. The implications of this may be wide-reaching, and are also likely to lead to a loss of the support networks.

15. Top tips – what can you do?
If you have a disabled child who needs a separate bedroom, or you need a room for an overnight carer, you have to tell your local authority so that they can look into this
The Contact a Family website has a draft letter you can use.
Tell the local authority why your child cannot share a room or that you have an overnight carer. Give them examples about why this is.
You can ask your child’s doctor or pediatrician, or your own doctor, to write a letter explaining why an extra bedroom is needed.
You may be able to get a Discretionary Housing Payment to make up all or some of the reduction – ask your local authority about this if you think you should get this.
From October you can take in a lodger without benefits being affected.
Tell Mencap’s campaigns team about your experiences – we need these to help us campaign on this issue.
The local authority will not automatically give you housing benefit for an overnight carer, a disabled child or for any other reason. You will have to tell them that you are in a situation which needs further attention. Contact a family have some letters available for families – so do contact them.
Even if you may not be entitled to an extra bedroom for an overnight carer or a disabled child, it may be that the local authority can give you what is called a Discretionary Housing Payment. This can be for a short period to see you over the worst, or until you have moved, or for an indefinite period. However, do remember, there is not huge amounts in the DHP pot and local authorities do not simply just take account of need but also of your financial circumstances.
In addition, you can also now take in a lodger to help you pay the rent. Recent changes mean that once Universal Credit is coming in from October 2013, income from a lodger will be disregarded for benefit reasons. However, between April and October 2013 this is not the case.
Please tell us about your experiences! Mencap is currently trying to make a case to the Government that this policy is discriminatory, and we need your stories to be able to identify what the key issues are! Thanks!

16. Household benefit cap
April 2013: Cap on the total amount of benefit that people of working age can receive.
Applies to combined income of a number of benefits including Jobseeker’s Allowance, Income Support, Employment and Support Allowance, Housing Benefit and Child benefit.
The cap is:
£500 for a lone parent or couple (with or without children)
£350 a week for those who are single
Households are exempt from the cap, if they:
Include a person in the support group of ESA
Include a partner or child (under 20) receiving DLA or PIP
Claim Working Tax Credit
BUT, the cap WILL still apply to parent carers who are looking after a disabled adult child.
Key dates:
15 April 2013 – started in the London boroughs of Bromley, Croydon, Enfield and Haringey.
The cap will be extended to the rest of the UK in stages starting on 15 July 2013, with the whole of the UK covered by the end of September 2013.
The Government repeatedly made statements saying that households with a disabled person in receipt of DLA or PIP would be exempt from the Household Benefit Cap. That means individuals in receipt of DLA or PIP as well as families with children under the age of 20 who are in receipt of DLA/ PIP will be exempt from this. Also not affected will be those who receive Working Tax Credit (below is some further info on when you qualify for WTC) and those in the support group of ESA.
HOWEVER, the rules mean that the cap WILL still apply to parent carers who are looking after a disabled adult child. Once the child becomes an adult, they are considered to be 2 different households, despite living under the same roof, and in reality little having changed in terms of the responsibilities of the parent/ carer towards their child/ relative. Additionally, we are concerned about the fact that fewer people will be in receipt of PIP, and therefore not exempt from the cap.
The cap will be piloted from April in 4 London boroughs and then rolled out over the country from 15 July 2013.
Mencap has raised this issue with the Government continuously over the last 2 years, but so far we have achieved little.

17. The impact on people with a learning disability and their families?
The household benefit cap is most likely to impact on those living in high rent areas such as London and the South East of England (49 per cent of affected households are in Greater London)
Families caring for adult children with disabilities might be affected by the cap, as they are seen as a separate household.
5,000 people affected by this are Carers who get Carers’ Allowance. They are facing losing £105 per week.
The cap will hit particularly families in high rent areas – in London for example, some rents for family homes may take the family above the threshold.
It will in those areas in particular have an impact on families caring for adult children/ relatives. Although their son/ daughter will not be affected by the cap, the rest of the family, who is still responsible in the law to pay the rent on behalf of the individual (they are the main renters and the child, in this case even as an adult, is considered to be part of their benefit unit, but not the household).
Mencap fears that this will make it impossible for some families to continue caring for their relative, even if they would like to.

18. Top tips – what can you do?
You may be able to get a Discretionary Housing Payment to make up all or some of the reduction – ask your local authority about this if you think you should get this.
Tell Mencap’s campaigns team about your experiences – we need these to help us campaign on this issue.
If you are affected by this, contact your local council and find out whether they may offer you some financial assistance via the Discretionary Housing Payment fund. As said, the fund is limited, and councils will try to use them relatively sparingly. However, it may be in their interest to do so, particularly where the other option is the family unable to continue to care.

19. About the Universal Credit
It will replace most means-tested benefits, including:
Income Support
Income-based Jobseeker’s Allowance
Income-related Employment and Support Allowance
Housing Benefit
Child Tax Credits
Working Tax Credit
How it’s put together: Standard allowance + additional elements (includes an element for those who have ‘limited capability for work’ e.g. for disabled people, the equivalent to ESA).
A single taper at 65% (the rate at which benefit is reduced as you earn more in work). You keep 35p in each £1
Universal credit … an attempt to simplify the current benefit system in order to remove barriers to you getting and keeping work. The Government sees work as the route out of poverty rather than benefits. It hopes UC will also save money in the long term but, in the short term, the new system is expected to cost £2 billion to set up.
Standard allowances for:
single claimants under age 25;
single claimants aged 25 or over;
couples where both members of the couple are under age 25; and
couples where one or both members of the couple are aged 25 or over.
The five elements are:
Child Element / Disabled Child Additions
Childcare Element
Carer Element
Limited Capability for Work Element (e.g. those eligible for ESA)
Housing Element.
Disregards and earnings taper
Different amounts will be disregarded from earnings for different household types in order to reflect their different needs and to support the aim that work pays. Disregards will be set at different levels for each of the following groups:
single people and couples without children;
lone parents with one or more children;
couples with one or more children;
and disabled singles or couples.

20. Universal Credit time-line
April 2013 – pilots started in a number of areas.
Between October 2013 and March 2014 local pilots across the country will deal with new claims.
From April 2014 there will be a gradual introduction of Universal Credit for all new claims.
From 2015, people on existing benefits will begin to be moved onto Universal Credit.
This process will be complete by 2017.

21. The impact on people with a learning disability and their families?
People will get to keep more of the money they earn in work- end of the ‘benefits trap’? BUT:
Some people will lose out financially:
Loss of Severe Disability Premium
Support for disabled children being changed
Issues like the Benefit Cap will apply to Universal Credit.
Important: transitional protections.
Abolition of the Severe Disability Premium (SDP)
Currently, the Severe Disability Premium (SDP) is aimed at disabled adults who receive the middle or high rate of the care component of DLA and who live on their own (with no one receiving carers allowance to assist them).
Under Universal Credit, the SDP will no longer exist (worth around £58 a week). In some instances this will lead to some people, particularly those with lower earning power, being less well off under the Universal Credit.
Reduced disabled child additions
Under the current system, children who are receiving any rate of DLA are entitled to the disability element of child tax credit. This is worth around £57 a week. In addition, those children who are in receipt of high rate DLA also receive a severe disability element of child tax credit in addition to the disability element (worth another £20 or so a week).
Under Universal Credit, this support will be through disability ‘additions’. However, the proposal is to half the amount received for those eligible for the disability addition. Children who receive the severe disability element (i.e. those eligible for high rate care DLA), will receive a higher disability addition which means they will be slightly better off than currently.
Transitional protection… i.e. no cash losers
No immediate cuts in benefit for existing claimants, BUT
Level of benefit frozen (i.e. no increase to reflect rising prices) until in line with UC.
Also, any change in household circumstance can see support cut.

22. Any questions or comments?
Tel: