DLA Consultation

Joint Response to

Disability Living Allowance Consultation

February 2011

This response is a result of a joint consultation process between Breakthrough UK Ltd, Greater Manchester Coalition of Disabled People, Manchester Disabled People’s Access Group, our members, disabled people accessing our services and the following organisations:

• BADGE
• Body Positive
• Disability Stockport
• Disabled Tenants from Harvest Housing Group
• International Society of Disabled People
• Our Independence
• Prosthetic Users Group
• Salford Deaf Blind Group
• Salford Disability Forum
• Tameside People First
• Trafford Centre for Independent Living
• Wigan and Leigh People First

What follows is a summary of the main issues and views highlighted at a consultation event we held on 3rd February 2011. 

We have also included detailed notes from all the questions we were able to tackle on the day (appendix 1) and supporting evidence (appendix 2). Some disabled people and disabled people’s organisations who were unable to attend the event have also contributed.

We want to make a very strong point that we reject both the process taken by the government and the proposals themselves.

Process:

1. The Department of Work and Pensions did not follow the Governmental Code of Practice on Consultation (http://www.bis.gov.uk/files/file47158.pdf) – in particular the consultation period given was too short and was held over the Christmas period (6^th Dec 2010 – 14^th Feb 2011) rather than the minimum 12 weeks recommended in the Code. Even though the consultation period was eventually extended by 4 days at the very end, this still fell short of the minimum suggested timeframe.

2. When we tried to order copies for our own consultation exercise we encountered a lot of barriers – despite over 60 disabled people being in attendance on the day, our reasonable request for multiple copies of the consultation documentation was not met. There were also major problems with the large print format (which was not provided in an adequate font size).

3. This did not appear to be an open and transparent consultation: we are all relatively well known organisations of disabled people but were not aware of any public consultation events - either regionally or nationally - that we, or the people we work with, could have attended.

Proposals:

1. The stated purpose of the proposals is to make the system fairer for disabled people.  This seems at odds with the government’s own announcement in June’s emergency budget to cut Disability Living Allowance expenditure by £1 Billion (or 20%). It appears that the real intention is to cut costs by reducing support to disabled people – there was a unanimous feeling amongst the disabled people in attendance that the government has made up its mind that we are an expense the country can’t afford. Despite assurances to the contrary, disabled people are feeling targetted and are being portrayed as a burden on the state. We also do not agree that DLA is subject to widespread fraud – the DWP’s own statistics in 2005 put levels of fraud at 0.4% of the overall DLA caseload, which is incredibly low: (http://research.dwp.gov.uk/asd/asd2/dlafraudjuly05.pdf)

2. If there was a true understanding of the Social Model of Disability within the government there would be action on removing the barriers that prevent disabled people from living independently. ‘Independent living’ is the right to have equal choices, to exert control and possess independence in how one leads one’s life, and the entitlement to services (like social ‘care’ and personal assistance) that support active participation.  This is not yet a reality; many disabled people are still living in expensive, segregated institutions; are victims of hate crimes; are excluded from the workplace, or under-employed without fair living wages; and without meaningful, inclusive education. We would prefer to see the government take a tougher stance on these issues and tackle these barriers with the zeal they are attacking welfare benefit recipients. The full inclusion of disabled people in society would result in wider economic benefits, increasing employment levels. One participant said: “We would create jobs if we were independent. It would cost less to the government in the long term.” See appendix 2 for detailed evidence of economic benefits.

3. The government is saying that disabled people’s situation is now far better because of improvements to:

• Medical treatments: Our organisations have local, regional and national data which demonstrates the persistent health inequalities experienced by disabled people.
• Rights: Many disabled people would argue that the existing legislative framework does not go anywhere near far enough to secure full civil rights for disabled people. Whilst some disabled people have enjoyed the right to a family life with the closure of some segregated institutions, the UK has still not ratified completely the ‘European Convention on Human Rights for People with Disabilities’.  And where rights do exist, many disabled people are unaware of them. For example research from 2010 showed that seven in ten disabled people reported that they had either never heard of the former Disability Discrimination Act, or knew little or nothing about it: (http://www.lcdisability.org/?lid=12274)
• Aids and adaptations: Whilst many disabled people find these essential, their successful use is not the same as independent living. We would like to see the DWP reflect our understanding of the word ‘Independence’ in the ‘Personal Independence Payment’. Based on the 7 Principles of Independent Living, identified by disabled people (see: http://www.breakthrough-uk.co.uk/AboutUs/Principles_of_Independent_Living), true independence means having choice and control over how you live your life. It is holistic and cannot be fragmented into lists of types of aids and adaptations, or of activities around mobility and daily living.

We would therefore argue that the assertion in the introduction to the consultation is patently not the case.

The questions below are the ones that were focussed on during the consultation event.

1. What are the problems or barriers that prevent disabled people participating in society and leading independent, full and active lives?

Society’s attitudes towards, and assumptions about, disabled people are often as big a barrier as the physical barriers we face. Recent evidence from the Social Attitudes Survey 2009 shows that, although there were notable improvements since the previous survey in 2005, many respondents still saw disabled people as less capable than non-disabled people. Participants also agreed that prejudice against disabled people was common (‘Public Perceptions of Disabled People:Evidence from the British Social Attitudes Survey’, Office for Disability Issues 2009).

Our experience as disabled people is that systems are bureaucratic, complex, and unhelpful – they appear to be there to ‘catch us out’ rather than facilitate the support we need to be independent.

Whether it’s navigating the built environment, using public transport or receiving information in an accessible format for example, (this consultation being a case in point), disabled people are denied full and equal access to the facilities and resources others take for granted.

Low expectations, segregation, and government policies that do not promote inclusion, mean that too many disabled people are being let down by our education system.40% of the total number of people out of work are disabled people, with employment rates of only 21% and 26% respectively for people with mental health conditions and people with a learning disability.

In turn this means disabled people are more likely to leave school without any qualifications and are more likely to be unemployed.2006 Research from the National Union of Students, for example, found that the majority of disabled students in further education are studying level 1 courses or below, and that double the numbers of disabled people aged 16-24 are out of education, employment or training, compared with non-disabled people: http://www.nus.org.uk/Campaigns/Disability/Finding-the-way-in-FE/

There is a misconception that disabled people are content to live off benefits and that being on DLA is a disincentive to finding paid work.  Given that approximately 30% of disabled people leave work during the period of applying for DLA (often due to the time delay), this seems to suggest that the problem is with the system currently in operation rather than disabled people themselves.

Recent research from the Office of National Statistics on Life Opportunities highlights some of the key barriers to employment and social life that disabled people still experience http://www.statistics.gov.uk/pdfdir/los1210.pdf. It reported for example that the most common barrier to employment was lack of job opportunities, followed by transport barriers. We do not support the opinion that DLA is seen as a barrier to work by many disabled people.

A January 2011 report from Centre for Cities showed that Greater Manchester will be disproportionately hit by benefit cuts: http://centreforcities.cdn.meteoric.net/CITIES_OUTLOOK_2011.pdf. This is on top of investigative work from the Manchester Evening News highlighting how the North West of England would be the hardest hit by government funding cuts. The services and support provided by organisations of disabled people, such as peer support, advocacy, and information are already poorly funded and are now under threat due to central government cuts, whilst local and central government generally fail to draw on the knowledge and experiences of disabled people’s organisations when developing and delivering services.

5. Should some health conditions or impairments mean an automatic entitlement to the benefit, or should all claims be based on the needs and circumstances of the individual applying?

The current automatic entitlement to DLA for the following health conditions should remain:

• If you are terminally ill and not expected to live more than 6 months (care component)
• if you have a double amputation, or were born without legs or feet (mobility component)
• if you are 80% deaf and 100% blind (mobility component)
• If you are on Renal dialysis due to kidney failure (care component)
• If you are ‘severely mentally impaired’, which means you require help day and night (mobility component)

* Also, from April 2011 people with a “severe visual impairment” will be able to claim the higher rate mobility component of DLA.

If someone qualifies under the current criteria, and there is clear evidence their impairment will not improve, why remove their automatic entitlement? 

There is both a practical and an economic argument to not waste the time of applicants or incur the cost of employing health practitioners if someone’s care and/or mobility requirements have already been established.

6. How do we prioritise support to those people least able to live full and active lives? Which activities are most essential for everyday life?

We would like to ask what is meant by ‘full and active lives’ here? What is meant by ‘least able’ and also by ‘most essential’? Disabled people should have exactly the same choice to participate in the same range of activities that non-disabled people have.

Disabled people should be able to travel around the country when they choose, to live where they choose to live, whether as tenants or owners, to attend education, to work (in a paid or unpaid capacity), to worship, to attend cultural or sporting events, to participate in leisure activities, socialise freely with their peers both at their homes and outside their homes, to marry or enter into a civil partnership and to raise a family. These are all essential for everyday life. The vast majority of disabled people experience barriers in all these areas. According to research carried out in 2006 by the Employers’ Forum on Disability and RADAR, 83% of disabled people had encountered insurmountable access barriers when attempting to access goods and services, to the extent of having to take their custom elsewhere.  Some disabled people experience more significant barriers in some areas than others.

The removal of benefits from significant numbers of disabled people – benefits that are currently being used to circumnavigate the barriers to inclusion in ways that have been defined by the individual – will lead to disabled people being less able to participate in all the essential activities outlined above.

As a result, there is a fear that disabled people will become isolated, marginalised, housebound and that the mental health of disabled people will suffer as a result. This will in turn lead to greater cost burdens on health service provision. The families and supporters of disabled people – already in many cases discriminated against by association - will be forced to assist more, financially and in terms of support, and this could lead to extra costs to businesses who may lose staff hours as a result.

8. Should the assessment of a disabled person’s ability take into account the aids and adaptations they use?

Therefore:

What aids and adaptations should be included?

Should the assessment only take into account aids and adaptations where the person already has them or should we consider those that the person might be eligible for and can easily obtain?

We reject the questions on aids and adaptations as they are posed in this paper. We cannot agree to the main question, therefore the second two points are automatically invalid. We do not agree that the assessment process should take aids and adaptations into account. This was unanimous amongst the disabled people who looked at this question.

Aids and adaptations are essential for independent living and their use or acquisition should not be subject to penalty: “we couldn’t basically live from day to day without them.” said one disabled person at the event.

The implication of this question, and of paragraphs 27 and 28 in the consultation document, is that by taking ‘successful use’ of aids and adaptations into account, people will becomeless eligible for the Personal Independence Payment. We have huge concerns about this:-

Aids and financial support are both essential to ensure that disabled people can live independently. They are interdependent. Aids and adaptations have often been hard fought for and money is required to replace or service them. People who obtain wheelchairs with a voucher for example have to pay for the maintenance themselves.

Disabled people gave examples at the event of how they use aids to get about - but people also require their DLA award to enable them to use, for example, accessible transport or their own vehicle financed through Motability. As a recent case highlights, loss of DLA and the linked Motability entitlement can lead to wider losses such as potential or real unemployment (see http://www.petersfieldpost.co.uk/news/mp_highlights_disabled_man_s_plight_1_2320558). This is not an either/or situation.

We also have concerns that focusing on identifying particular aids and adaptations could potentially exclude people with more complex impairments. People’s requirements should be looked at individually in the context of the barriers they face, rather than following a set list.

Statutory suppliers and funders of aids and adaptations are currently having to work within significant funding constraints – disabled people have been told that local sensory teams are having their budgets cut by 25% and Access to Work, for example, has recently scaled down the kinds of equipment it will pay for (http://www.abilitymagazine.org.uk/Articles/Article-108-3.aspx).

Disabled people are very concerned that, as options to acquire funded equipment become more limited, at the same time the financial means to pay for it ourselves via DLA may not be there. Disabled people often finance our own equipment as it is. Disabled people should not be penalised for using something that enables us to live more independently.

An additional concern is that disabled people may be told that they are not entitled to benefit because they have chosen not to use a particular aid or adaptation. For example, would a hard of hearing person who refuses to use a hearing aid or have a cochlear implant be told that they are not eligible for the PIP? This raises some very fundamental questions about choice and control.

Another important point is that aids and adaptations can only be successfully used in a consistently accessible environment, which is not the case currently. Also context and regulations can restrict use – for example people who have wheelchairs funded by the NHS are often told that they cannot use them outdoors.

Reducing / removing payments to a disabled person who theoretically ‘successfully’ uses a wheelchair is additionally likely to significantly restrict their options in other areas because of the loss of money to overcome other additional costs. These complexities need to be acknowledged and addressed.

9. How could we make the claim form easier to fill in?

We know that the complexity, length and repetitiveness of the current claim form creates a lot of barriers for disabled people. From the experience of our own advocacy projects we also know that some people will not even go through with a claim because the forms are so off-putting.

There should be information in a separate booklet about criteria and eligibility. The language used should be simpler and contain less jargon.

Disabled people should be involved in devising the questions/forms - this would ensure that a barrier removal approach is used throughout. This is in line with the government’s commitment to co-production i.e. service providers work in partnership with people who receive the service to develop it.

For ease of completion it would also be useful to have guidance on eligibility criteria for each rate, but to keep the form non rate specific for first time claimants.

More attention needs to be paid to accessibility, for example, there should be options to complete the form using Boardmaker, as well as Braille, large print and other languages. The form should be made available in different colours.

10. What supporting evidence will help provide a clear assessment of ability and who is best placed to provide this?

Our position on this is that disabled people should be in control of the evidence provided as we are the experts on our own lives. We are not sure how ‘ability’ relates to a barrier removal approach and would refer back to our response at question 6.

One option, where relevant and desired, would be that, if an individual has already had a community care assessment carried out by their local authority, the resulting agreed plan should be allowed as supporting evidence in any assessment of their eligibility and entitlement for PIP. Similarly, if an individual has had a Community Care Plan (CPA) assessment, any resulting care plan should also be allowed as supporting evidence. However, care plans should only be used as supporting evidence with the express permission and endorsement of the individual being assessed.

Some people felt that applicant’s own GPs also have a role to play as they may know the individual better. We also support the National Audit Office recommendation (Progress in improving the medical assessment of incapacity and disability benefits– 2003) that the DWP: “should look to obtain more evidence about customers' conditions from professionals involved in their treatment, such as consultants, occupational therapists, social workers and community psychiatric nurses, to help achieve better decisions, as well as reducing the need for medical examinations.”, as opposed to relying on ‘independent healthcare providers’ who do not know the person.

11. An important part of the new process is likely to be a face-to-face discussion with a healthcare professional. What benefits or difficulties might this bring?

Disabled people should be given the opportunity to have an advocate of their choosing to be present during such an assessment. Any disabled person applying for PIP should have the right for their advocate to support them to speak on their own behalf or for that advocate to speak on their behalf. 

As discussed below in our response to question 14, we would like to see options built in for self assessment and peer assessment. This would fit in well with the work of user led organisations, ensuring that disabled people who understand the barriers to independence are at the heart of decision making.

We note with concern that there is no definition of a ‘health care professional’. We believe the DWP should clarify who will be allowed to carry out ‘face to face discussions’ and stipulate what constitutes a ‘healthcare professional’.

There is also concern around the term ‘face to face discussions’. Cleary it is an assessment and should referred to as such.

We are also worried that if private companies are contracted to carry out PIP assessments, there will be pressure and/or financial incentives for them to decline applications in order to meet government targets. There has been a lot of discussion on online forums about this, and we would like to see a clear statement from the DWP that payment by results will not be used in any form of independent assessment used for PIP.

Interpretation or other means of communication should be provided for Deaf people and Deaf Blind people required to attend any face to face discussions/assessments.

The DWP and all those involved in assessing an individual’s entitlement to PIP need to both recognise and reduce undue stress caused by any written communication or face to face assessments. 

There is real concern that under the current proposals an individual will jeopardise entitlement to PIP if they have made an effort to improve their quality of their life.

We note that others, such as the Office for Budgetary Responsibility, have pointed out that it is far from clear that introducing medical assessments will in fact reduce expenditure on the DLA budget in any case:

http://www.communitycare.co.uk/Articles/2010/06/23/114776/medical-assessments-for-dla-claimants-may-not-save-cash.htm

14. What types of advice and information are people applying for personal independence payment likely to need and would it be helpful to provide this as part of the benefit process?

We think it would be useful to include information in the claim package on all the different types of benefit and support available from the DWP.

We have concerns that relying on people from the DWP itself to provide information and advice on filling in the forms is not balanced enough. People working at Centres for Independent Living (CILs) should be trained to provide this. This could also provide job opportunities for disabled people as disabled people generally understand the barriers faced.

More work needs to be done to make appeals procedure more understandable.

Recent analysis suggests that the system will be clogged up with costly appeals: “The review of all DLA and ESA claimants will be a very expensive process, and on current evidence, reviews will lead to many successful appeals.” says Alan Roulstone in ‘In Defence of Welfare - The Impacts of the Spending Review’ (2011).

Disabled people find that the assessment process is currently biased, flawed and humiliating – “baring our souls to strangers who then make assumptions is wrong”.

Attention needs to be given to making the process more dignified.

The emphasis should be on improving quality of life. It should be needs led and more flexible.

The process needs to take better account of people’s changing requirements when people have fluctuating and deteriorating long term conditions.

Information and advice should also look at the impact claiming this might have on other benefits and how it affects other schemes e.g. travel vouchers from GMPTE travel passes and vouchers, Motability, carers allowance etc.

Information needs to be provided in advance about what would happen if someone stopped getting DLA/PIP. For example: Is there a transition period? Can you reclaim within a certain amount of time if you relapse? Is it safeguarded for a certain amount of time as incapacity benefit is? What about remitting and relapsing impairments? These are questions which people need to know the answers to before they claim.

Appendix 1

These are the full notes which were taken down at the event.

What types of advice and information are people applying for personal independence payment likely to need and would it be helpful to provide this as part of the benefit process?

• Claim package with all the different types of benefit available from the DWP.
• Train people at CILs to provide info and advice on how to fill in forms as this being done by the benefits agency is too biased – could provide job opportunities for disabled people as disabled people understand the barriers faced. Need to understand the appeals procedure.
• Assessment process is biased, flawed and humiliating – bearing our souls to stranger who then make assumptions is wrong. How can we make the process more dignified?
• It should look at improving quality of life. It should be needs led and more flexible.
• Disabled people should be involved in devising the questions/forms.
• Look at impact on other benefits and how it affects other schemes e.g. travel vouchers from GMPTE, Motability, carers allowance etc.
• How can they use information and claiming process to look at things like mental health etc.
• Information about what would happen if you stopped DLA – transition period – can you reclaim within a certain amount of time if you relapse? Is it safeguarded for a certain amount of time as incapacity benefit is? What about remitting and relapsing impairments.

How could we make the claim form easier to fill in?

• Information in a separate booklet about criteria and eligibility.
• Address barriers.
• Less repetitive.
• Have an index page at the front splitting difficulties into sections – pointing you to relevant sections. Tick box, prompting to fill in all relevant parts.
• Simplify language.
• Rate specific – include eligibility criteria for each rate.
• Non-rate specific for first time claimant.
• Accessibility for everyone i.e. Boardmaker (already in Braille, large print and other languages).
• Different colours.

Should the assessment of a disabled person’s ability take into account the aids and adaptations they use?

What aids and adaptations should be included?

Should the assessment only take into account aids and adaptations where the person already has them or should we consider those that the person might be eligible for and can easily obtain?

• It is going to be increasingly difficult to get hold of equipment because of the current climate of cuts. Sensory teams for example are facing 25% cuts and currently don’t have to pay for equipment funded by DLA so there will be implications for them and the people who use their services in the future.
• This is a very loaded question! People expressed concern about the way the questions in this paper had been asked in general.
• One person talked about his concerns around losing mobility component. He gets around using a crutch and his Motability car is his main way of living independently. Without this he said he would be stuck in the house.
• One person asked whether other sources of assistance such as personal assistance are going to come under the umbrella of aids? Social support can be just as important as mobility aids for example.
• People agreed that aids and equipment should not be taken into consideration in the assessment process, although they are very important to disabled people’s independence.
• We’re paying for the aid – people pay out of their own money often.
• One person was concerned that focusing on identifying particular aids and adaptations was divisive and could potentially exclude people with more complex impairments. People’s requirements should be looked at individually rather than following a set list.
• These proposals affect people mentally with stress of having money taken away. One person emailed in to say: “I am gutted because any changes in DLA will affect me badly, that is if they are adverse ones and I cannot see that they will be anything but adverse. I was unable to drive for about 6 months last year and relied heavily on the DLA for taxis to go to the doctor/hospital and generally out and about. Although I decided against a mobility car I do have my car tax paid and that is such a help. Any reduction or changes about your claim validity are going to put so many people, including myself, through so much unnecessary stress, and I am still trying to come to terms with what has happened to my body, the way it is deteriorating etc and fighting recently diagnosed severe depression, which of course is not helping with my pain and general health.”
• People were unsure about what was meant by aids?
• There was also a concern that if you don’t use a particular aid that they think you should, that your benefit would be taken away.
• Again an issue was raised about the economic climate – for example Access to Work are also significantly reducing the type of support they will supply to working disabled people. All services are having their money cut so it will be hard to get these aids.
• One person had recently had his DLA taken away and was struggling financially now.
• People are afraid to go into education as they feel their money will be taken away.
• Motability paid towards a hoist for one man to be able to get his wheelchair into a car. Without this aid he would not be able to drive.
• It is dangerous to take into account aids and adaptations you could have.
• The Equality Act should be protecting people, not creating further barriers through new rules.
• An aggressive and penetrating response is needed – it needs to be a political tool - mentioned Jonathan Swift.
• One person felt the decision had already been made but all felt we should fight back.
• Not an either/or situation. A lot of people have had aids and adaptations and need money to replenish them. But we still need a person to do certain things.
• Aids and adaptations are great and many people have difficulty acquiring them – they have been hard fought for, but we need both money and aids for independent living.
• Given the commitment expressed in their reform paper, DLA claims should increase to 6 million to reflect the number of disabled people in society who experience barriers to independent living.
• Aids are not only essential -  we couldn’t basically live from day to day without them.
• Our response needs to make uncomfortable reading that can’t be pushed aside.
• A consequence would be isolation for disabled people if we are told to just rely on aids and adaptations and cut money.
• You can’t have inclusion if the support is not there.
• One person felt it may disadvantage learning disabled people. How will losing your DLA affect access to other services – blue badge, community care, bus pass etc.
• They have said that they will protect motability but haven’t said how. One person said that they felt this was because there is money in Motability cars.
• Mobility component is not always used for Motability – need to also protect use of it for taxis, travel etc. - made the point that we need to be careful how we put our point across so it doesn’t disadvantage anyone.
• Need to make sure services are in place to support people if they are cutting services as well – this is disastrous.
• People are worried that they’ll be told, “you have an aid, you don’t need anything else.”
• Refer the government back to what the Social Model of disability actually means and the 7 needs of independent living. DLA should be holistic and take account of all 7 needs rather than trying to fit requirements into the slots of ‘care’ and ‘mobility’. How does IT access technology fit into these components?
• If they take into account all adaptations we could possibly use across all the different impairment groups and across all 7 needs it would cost the government a lot more.
• One person said day centres are being shut down that have been benefitting people. We need more support in terms of money for independent living in such circumstances.
• If the government really followed the Social Model of disability they would need to make more money available, not less.
• Where will people go to get support with all the costs?
• The questions are very badly worded.
• One person said, that actually it would cost less if disabled people were enabled to be independent – this is the economics of disability. We would create jobs, for example, if we were independent. It would cost less to the government in the long term. We need to tell them what independence is! We need to sell them the economic argument.
• One person questioned whether it always has to be about the Social Model – we might need to mix it with the medical model. Another person explained that the Social Model is about removing the barriers we face and that the government doesn’t understand what is meant by the Social Model.
• One person felt that the proposals and consultation questions have been very cleverly worded in favour of benefits being cut.
• One person felt we need to tell them what ‘independence’ in PIP means. It would be far wider than care or mobility.
• One person said we’ve gone back 20 years – what about ‘personalisation’
• There is a difference in how they think we become independent and how we know we get there.
• One person said that they are trying to put a sell by date on DLA.
• Need to look at where other services have gone wrong too – mentioned GP’s writing sick notes.
• Government is saying that they are trying to promote mental health and well being, but cutting money is going to affect our mental health.
• What are their priorities in terms of impairment? Who are they going to target first? One person felt that changing DLA will affect people with mental health impairments first, then people with physical impairments etc.
• One person said that they are ignoring disabled people and treating us as imperfect.
• Someone likened the government to Hitler and said that they (the government) would prefer it if we were all dead!
• Because people are living longer and there are advances in medical treatments, how does this affect our argument? Medical advancement is great, but how do we handle the numbers of disabled people who deserve to live independently. We need to ask how they think this means we don’t need DLA, we need it even more!
• We need to test their statements and ask for explanations, referring them back to the Social Model of Disability which they claim to use.

What are the main extra costs that disabled people face?

• Extra costs that DLA is supposed to cover; travel, someone to support you, get grit to de-ice path in bad weather.
• I person uses their DLA to meet additional travel costs, and this is not enough.

What are the problems or barriers that prevent disabled people participating in society and leading full and active lives?

Group 1

1. Peoples’ and society’s attitudes / ignorance towards disabled people
2. Access difficulties for people with both mobility and sensory impairments – including lack and condition of housing access
3. Poverty – disadvantage through education
4. Deliberate Government legislation and policies which prevent inclusion
5. Information and access to information in the correct format
6. Lack of independence barriers to independence
7. Bad management of information and deadlines
8. Changing legislation and procedures – which confuses and creates barriers to understanding.  Clarification is important.

Group 2 

1. Other peoples’ attitudes / lack of acceptance
2. Myths and misconceptions about disabled people being on DLA and this being the reason they don’t work.  Plus ideas that disabled people are content to live on benefits.
3. Problems getting around / lack of accessible transport.
4. Medicalisation of disability.  Involvement of GPs and other practitioners who don’t understand the barriers / difficulties.  Lack of understanding of the impact of impairment.
5. Lack of understanding of variable conditions.
6. Conflict of interest.  Professionals paid by results (i.e. getting people off DLA).  Not objective process, cannot trust process.
7. Starting point of DLA process is the need to ‘prove’ we need it.
8. Some require assistance with daily living activities (getting up / dressed etc).   These people may continue to get support but others who have independence requirements will no longer get benefit (fear).
9. Disabled people need peer support from other disabled people.  Need to be able to meet / share.  Group funding being cut.
10.   Stigma.  Non disabled people don’t want to be associated with us.  Assumptions about our abilities and needs.
11.   No dignity in system to get independence support.  System is there to ‘catch us out’ rather than facilitate the support we need to be independent.
12.   Disabled people should be involved in process  Reps from organisations of disabled people should be involved in decision-making.
13. System of assessment Robust evidence of social model

Should some health conditions or impairments mean an automatic entitlement to the benefit, or should all claims be based onthe needs and circumstances of the individual applying?

Yes.  Some conditions make for an automatic entitlement. These examples should remain and be added to if there is evidence that they will deteriorate or not improve.  Not only the terminally ill as in the present Government exceptions.

Need to assess individual circumstances and each person’s unique needs using a wide definition of disability to include mental health and social needs  eg panic attacks

Consider strong economic argument not to continually re-assess

Ignorance of DWP – asking people with severe life-long conditions to come in for a job interview

Discrimination against those with hidden impairments eg mental health or deaf or blind service-users who seek independent living  due to an emphasis on physical barriers eg getting in or out of bed

Risk of a blame game – with level of suspicion if no clear disability

Breach of Human Rights Act – since all people have a right to a family life which is not a priority in the assessment process.

One person emailed in to say that people with ‘severe mental illness’ should be automatically entitled.

What supporting evidence will help provide a clear assessment of ability and who is best placed to provide this?

Everyone should have a Care Plan –

• a legally binding document signed by both parties
• this can be amended by the individual concerned
• provides evidence of conditions, medication etc

Consultants are totally unaware of many individual needs – which is restricted to a brief interview period only

Vs Need for Medical assessments and evidence should be carried out by medical experts not by unqualified people (may be illegal)

There is a need for continuity between carers and different assessors.  A change in carers has a huge impact.  Standards may fall when employing worse-trained staff in order to meet tenders at low cost.

Wider representation and a collective response is key. 

Requirement for named persons as Advocates who can speak up for the person with a disability (not vice-versa).  Advocate who secures what you want to choose, has your best interests at heart.

Funding is required for independent advocacy.  This is available to all but cutbacks in advice / legal aid (eg CAB) has led to a failure to take on new cases

Advance Directive – can anticipate not making own decisions in the future but this is not binding and can be over-ridden

Being talked down to in the assessment makes me feel worse and makes me out to be a liar – especially if I am not told why I am being assessed 

An important part of the new process is likely to be a face-to-face discussion with a health-care professional.  What benefits or difficulties might this bring?

There is no definition of the type of health professional

It should be a 2 way conversation not a 1 way assessment in which the professional makes a decision about you

Dialogue is essential so that both parties can reach consensus (or not) at the end.  It is an assessment with repercussions not a discussion.

Concern that the decision has already been made and sorted out behind closed doors.  National Audit Office Report on Complaints Procedure confirmed that professionals were not really listening and had already made up their mind.

The assessment must be open, transparent and based on reciprocation and at a place where both parties feel comfortable

It may require an advocate as support to reduce the power differential with an extra need for an interpreter for deaf people – however there may be a cost of £300 for a single assessment if both are required

Requires sensitive staff involved in residential care if a disabled person cannot communicate for themselves

Many disabled people are getting lost in all these changes and new reviews

There is a stress in receiving and acting on letters and in confiding in someone who you don’t know

Little acceptance of the threat / trauma / life-threatening effect of the process.  Undignified process under a smokescreen of confidentiality.

Contradiction cannot be overcome – to prove a negative to get a positive.

Discourages being positive – if you are, it will cost you money

3a The new benefit will have two rates for each component. Will having two rates per component make the benefit easier to understand and administer, while ensuring appropriate levels of support.

Also what, if any, disadvantages or problems could having two rates per component cause?

How do we prioritise support to those people least able to live full and active lives?

Which activities are most essential for everyday life?

How can we best ensure that the new assessment appropriately takes account of variable and fluctuating conditions?

• The language used in the question was itself questioned. What is meant by ‘full, active lives’, what is meant by ‘least able’ and ‘most essential’?
• Definitions and assessments – should include experience of barriers and the experience of disabled people.
• Some solutions to the so called ‘barriers’ e.g. suggestion that disabled people can heat up microwave meals. These are unhealthy, expensive and impossible for some people.
• There is a danger that more disabled people will become housebound – becoming unhealthy.
• Tenancy.
• Advocates as well as attending and g.p.s and consultants reports.
• All activities are essential.
  • Work
  • Planning meals
  • Activities and exercise
  • Spiritual
  • Football games – being part of the community
  • Lifestyles.
  • Saving costs affects mental health.
  • Health and safety issues.
  • Reduction in care component may lead to cutting down the social interactions that people have which could lead to loneliness and increased mental health issues.

General comments

The assessments start in 2013. There will be a DLA review but starting afresh, with everyone making a new claim.

• Problem – there will be a lack of experience by assessors
• Disabled people are seen as just an object at the whim of others.
• This process is not about quality of service, just about saving  money.
• Shouldn’t be allowed to happen – it’s outrageous.
• False pretences, since cuts – picking on disabled people and ruining their lives, like it or lump it – hit the most vulnerable. In residential home – residents assessed but where are the assessors coming from?
• Who are ATOS? What is their expertise if any?
• ATOS are the same people who do medical assessments on incapacity benefit but on a performance target (they are paid on the number of people they shift off benefit) and are poorly informed.
• The assessors need to be medical experts with up to date information to make these sorts of decisions.
• The consultation period is too short. Decision can’t be changed.
• It’s all about money and private profit.
• Concern about the deaf community who may be unable to read DLA information and need time to understand – clear English.
• The most vulnerable people will be first to be kicked off. ]
• Need to have interpreters and key support who understand needs. We are reduced to a £ sign and a cost implication – refusing us because we cost money, no confidence in GPs.
• Conflict with the law against discrimination.
• Health Watch UK replacing contracts of local LINks by 2012. will have to be trained in disability and commissioning – with greater powers than now.
• Assessors will be from the private sector not local GPs.
• Risk of being penalised for trying to be more independent especially if medical conditions vary.
• Failure to acknowledge cost implications and impact of aids/adaptations – threat of taking away allowances if no mobility problem. Using a powered wheelchair – fails to acknowledge time of day/social situation e.g. crowds.

C. How often should people have their benefit entitlement reviewed?

• Problem of abuse of some claimants (perceived??) but there is a need to clamp down on them not all disabled people – why do we have to suffer?
• Medical report and GP check should highlight risk of prosecution. Why not involve disabled people in a panel to review cases.
• Choose disabled people to do the assessing.
• End process of arbitrary reviews and picking on some people unfairly. Emphasize everyone is an individual case.
• Discover contribution and views of disabled MPs in this discussion. The government not us benefits from the review session.
• Should have a personal session to deal with specific individual issues – including deaf/blind.
• Assessors should have understanding of the social model of disability – how to assess the people who assess?
• Yearly review – interpreting costs increase and DLA may be out of date – help to reduce fraud.
• Or should be agreed with each individual at their initial session on an individual basis – we can’t say one size fits all.
• Several people who could not attend the event contacted us to say that people who were originally given a lifetime award or an indefinite award of DLA should not have their benefit entitlement reviewed.

Appendix 2: Supporting Evidence

Disability Living Allowance (DLA) was designed to assist (in-part) with the income disabled people have to divert to meet expenses that non-disabled people do not incur (Sainsbury, Hirst and Lawton, 1995).  However, as SPRU (1995) discussed, this does not address the fact that most disabled people have much more limited income than non-disabled people before these extra costs.  Only about one fifth of disabled people in the UK currently access DLA at all. 

The view given in the DWP 2010 consultation for narrowing DLA recipients and levels is that disabled people apparently now enjoy much higher levels of inclusion and independence than in 1992, when the benefit was introduced.  However, the evidence and consultation response demonstrate that there are particular barriers and inequalities, experienced by disabled people accessing services in the UK and some particular poverty and inequality barriers in the North West of England.  The amount by which the disabled poverty rate exceeds the non-disabled poverty rate is now markedly higher than it was in the 1990s (New Policy Institute, 2006).  

The supporting evidence in this document, delivered with the joint consultation response supports the conclusion that, by removing Disability Living Allowance from some disabled people, restricting new claimants and creating a PIP, these barriers will be exacerbated.  In some cases, this will create further costs to Government, statutory services and society and these consequences of removing DLA may outweigh the small financial cuts made in this exercise.  Conversely, by ensuring DLA as the basis from which disabled people access independent living, community engagement as preparation for employment and employment itself, disabled people will be included in society, which would result in would result in wider economic benefits for all (O’Shea and Kennelly, 1996). 

Disabled People’s Standard of Living

30% of disabled adults of working age are living in poverty – around one and a half million people (New Policy Institute, 2006).  This poverty rate is around double that for non-disabled adults and, unlike that for children and pensioners, rather than having fallen in recent years, is arguably rising.

The poverty rates suggested by some recent Government figures and the State of the Nation reports, appear to use the definition of poverty as 60% of median income.  However, the thresholds for disabled people do not allow fully for the disability-related support, mobility and independent living costs faced by most disabled people (Pudney, 2010).  When the misleading measure is removed, rather than not having much impact on the poorest people, the statistics show that the abolition of DLA would have a large impact on some of the poorest sections of the population (Pudsey, 2010).  Changes to DLA rates as they have been suggested by DWP, could result in between 23% and 47% of all disabled pensioners being thrust into the highest poverty threshold in the UK (Pudsey, 2010).  

In addition, whilst DLA only rises in line with earnings, the disability-related extra costs will rise in line with prices, so, since the inception of DLA, the gap between the value of the award and its buying power has already been eroded substantially. 

Disabled people’s employment

The Government suggest that disabled people’s employment rates have improved markedly since 1992. Although there has been an increase in the numbers of disabled people employed, DLA is not designed to be an in-work benefit, so comparisons made by DWP here in their rationale for restricting and reducing DLA levels are less than useful. 

However, it remains the case that disabled people are already one of the most disadvantaged groups in employment; we are more than three times more likely to lack employment than non-disabled people (JRF, 2005).  40% of the total number of people out of work are disabled, with employment rates of only 21% and 26% respectively for people with mental health conditions and people with a learning disability.  Removing DLA from these disabled people may increase their likelihood of being caught in the poverty trap and reduce their ability to link into communities, gain volunteering experience and even progress into the workforce.  According to the Labour Force Survey (2005), one in five disabled people in the UK are unemployed but want to work (compared to only one in 15 of non-disabled people).  Disabled people in work are also more likely to have lower job security and unequal pay barriers, compounded by gender and ethnicity.  Longhi and Platt (2008) explain disabled people are paid between six and 26 per cent less than non-disabled people for equal work and when compared to non disabled men, disabled men have a pay gap of 11%. The same study showed that for every pound a non-disabled man earns, a disabled woman earns only 88p for equal work. Therefore, few disabled people are likely to be able to meet the extra disability-related costs through their income; when these are taken into account without DLA, the few working disabled people will be more likely to live in poverty than non-disabled people with similar incomes and inequality is therefore likely to increase for this group. 

But has there been an improvement in employer equity and provision for disabled people in the time since DLA was introduced, as the Government infer?  Dewson et al’s research (2010) showed that awareness of the DDA amongst employers had actually fallen by 4% between 2006 and 2009. Only 30% of employers in the survey employed a disabled person, which is lower than the 43% which had employed a disabled person in the last ten years. The employers making adjustments for disabled people had fallen from 70% to 61% from 2006 to 2009. Less than half had adapted the workplace.  Fewer adjustments were made for new employees who were disabled, which demonstrates another barrier in accessing the workplace for disabled people. 

Disabled people still face discrimination in the workplace; Employment Tribunal claims accepted in 2009-2010 were 7,500, up from 6,600 in 2008-09 (EAT, 2010), of which only 3% resulted in judgement in favour of the disabled person; this may further reflect the barriers and lack of advice and provision for representation for disabled people to take cases. 45% of employers settled with payment before a hearing, which again shows that disabled people do not all enjoy rights in the workplace.  The average awards for Disability Discrimination were from two to ten times higher than those for in other equality groups, reflecting the higher impact of the discrimination on disabled people. 

However, significant economic benefits have already been evidenced, where disabled people can engage in mainstream work, preparation for work and volunteer in their own organisations of disabled people.  Consultation with members and service users shows that DLA is the basis from which this inclusion is possible; without it, disabled people would be more unable to work or volunteer in their community.  The economic benefits of disabled people being included in work and volunteering are substantial.  SRoI analysis demonstrate value created of between from £3 (low estimate) to £5.70, £8.38 and £27.53  (Maxwell, 2009) is made in savings from conventional services, benefits, created in tax value and returned in social added value (Roulstone and Lewis, 2010).  Our organisations hold that removing DLA will remove the fundamental building block from disabled people’s lives, which will further disable us and prevent us from contributing to economic growth in the future. 

Disabled people’s education

In education, disabled people are also discriminated against, which significantly impairs their life chances and earning potential (with which they may have hoped to meet disability-related costs which will still exist and outstrip , even with the erosion of DLA). In 1986, 20% of workers were required to have a Level 4 (higher) qualification.  By 2020 it is projected that demand will be 40%, with the growth of the knowledge economy. However, in 2003, 40% of disabled people had no qualifications at all and this is particularly damaging for young people, as 27% of disabled people aged 16-24 had no qualifications in 2003, compared to 12% of non-disabled people of the same age. 

Disabled people also have a particularly low representation in public appointments – ten years after the introduction of the DDA, rates of disabled people in public life were only 3% (and where disabled people are in public life it is disproportionately public appointments which relate to disability) (Cabinet Office, 2004).  This is despite 6% of first class degrees being awarded to disabled people in 2006 (DfES, 2006).  This structural inequality may be compounded by the removal of the Duty to involve disabled people in decisions about them, from the Equality Act 2010.  This subsequent invisibility and the under-representation of disabled people in public life, means that barriers and disability-related costs in relation to public services and investment are unlikely to be easily tackled and prevented in decisions and resourcing by the very bodies which aim to reflect the communities they serve, further compounding the inequalities disabled people face.  This inevitably leaves disabled people with individual disability related costs to meet from DLA, as larger barriers are not systematically prevented and eradicated by providers and employers. 

Community exclusion

58% of DLA claimants receive the Higher Rate Mobility award, which is consistent with the poor provision of accessible information to access transport in the UK, compared to some of our EU neighbours (DfT, 2008).  Most disabled people use this award to fund lease or purchase of wheelchairs, mobility scooters or vehicles.  Reduction in this benefit will therefore disproportionately affect disabled people in rural areas.  Volunteering is a major route to employment, but disabled people are 9% more likely to be excluded from volunteering than non-disabled people (ACAS, 2009).  Currently, there is no funding for disabled people’s support needs to be met in volunteering; without DLA, even fewer may be able to participate. 

Independent living is crucial to disabled people being able to volunteer, become ready for work and take part in their communities.  It may also a protective factor against hate crimes; many of which are perpetrated against disabled people –23 murders of disabled people were perpetrated in three months last year (Novis, 2010).  Other evidence shows that hate crimes are known to increase at times of economic recession (Frost, 2008).

So, despite the urgent need to ensure disabled people are not excluded from their community, the Scottish Housing Survey (2004) showed that disabled people (41%) were less likely to feel involved in their community than non-disabled people (30%).  This exclusion risk is worse for disabled children, who are over represented (10.5% according to Children in Need, 2002) in the excluded population of Looked After children. Even more disabled children are recorded under the category of looked after by reason of abuse rather than disability and the life chances of these children are vastly reduced compared to that of non-disabled people. 

Disabled people and their families are also twice as likely to live in deprivation and in the social rented sector as other households overall (Housing Scotland Survey, 2005) and more unlikely than most people to ever own their own home, due to the shortage of accessible, affordable property.  This may lead to a greater experience of being a victim of crime (BCS, 2009).  

Given the stigma that disabled people face in society, contact is crucial with the community, as this affects attitudes, whether or not the contact is voluntary (Corrigan et al 2001). Contact can be retrospective or prospective – in other words, engineering contact as an anti-discrimination intervention promises to be effective (Couture and Penn 2003). By eroding Disability Living Allowance (and particularly mobility component) levels, especially through discriminatory ‘assessments’ which are likely to disproportionately impact people with hidden, relapsing or remitting impairments (including mental health service users and Survivors), this contact will inevitably be reduced.

Improvements in medicine

The consultation document says that improvements in medicine mean that disabled people now need less DLA.  However, our organisations have local, regional and national data which demonstrates persistent health inequalities experienced by disabled people. The DRC formal investigation into health inequalities (2004) found that mental health service users are more likely than others to experience illnesses like strokes and coronary heart disease (CHD) before the age of 55. This is not because of any genetic or impairment effect, but as a direct result of a lack of access to equitable services and diagnostic overshadowing.  For people with mental health service need, service use or Survivors, some tests and standard treatments – such as spirometry to identify respiratory illness or cholesterol checks and statins for people with heart disease – are given less often than to people without mental health problems. Once people have these additional conditions, they are less likely to survive for more than five years.  People with learning disabilities have higher rates of obesity and respiratory disease, and high levels of unmet needs. Both groups are likely to die younger than other people. People with schizophrenia are almost twice as likely to have bowel cancer as other citizens. People with learning disabilities who have diabetes, have fewer measurements of their body mass index (BMI) than others with diabetes, because they have persistently less access to information and services than non-disabled people, leaving them more prone to high levels of heart disease. Those with stroke have fewer blood pressure checks than others with a stroke. They also have very low cervical and breast cancer screening rates.  This evidence demonstrates that improvements in scientific breakthroughs reported in the media are not necessarily enjoyed by disabled people as the Government claim.  Removing DLA will have a further negative impact on disabled people who use their mobility and care award to access health services and information where public transport or accessible health promotion is not available, or where aids and adaptations provided as standard do not meet their complex support needs.  The artificial barriers between health and social care services and the lengthy time required for assessment, means that, with the removal of DLA, many more disabled people may be confined to acute, in-patient services for longer than necessary (sometimes called bed-blocking) and may be unable to have choice and control over the aids and equipment they currently purchase with DLA when their needs change.  This erosion of DLA would therefore run contrary to direction of travel in individual budgets (Putting People First, 2008), at a crucial time of relapse, exacerbation or changed needs, where disabled people have consumer control over the purchase of equipment and services to meet their needs.  There is no evidence that proposed (block contract) reablement services will meet the support, care or equipments needs of people with complex or changeable long term conditions, including dementia and neurological conditions. 

The Administration of DLA

In trying to reduce inefficiencies and save money, the Government may wish to consider the existing system and repair its problems, rather than spending resources on an expensive reform.  Hirst (1997) explains that the accuracy of adjudication decisions is particularly at risk when a new benefit is introduced or at other times of structural reorganization; this may exacerbate the inequalities experienced by disabled people even further.  Hirst found that DLA benefits assessed in Manchester were more likely to be subject to GP report, where Birmingham, Sutton and Bootle were significantly more likely to decide claims after receiving an EMP’s report.  He also found significant differences in the availability of welfare advice, information and advocacy, necessary for claimants.  Given that disabled people’s organisations face closure and cuts from statutory funding, this advice is unlikely to be as available.

Across the UK, there is significant variation in the judgements made about whether and how to take account of disability benefits like DLA when assessing clients’ ability to pay (Baldwin and Lunt 1996).  Several Councils have indicated they are more likely to include DLA in these calculations, to help meet the shortfall in their own budgets after cuts.  By removing this benefit, these disabled people will be more likely to fall into poverty.  Our consultation responses demonstrate that the care packages that some disabled people have, and their standards of living, may be threatened by the removal of DLA, irrespective of their particular needs and resources, which shows no improvement in these inequalities and poverty identified by Chetwynd et al. findings in 1996.

The Government, from April 2011, promised to introduce a qualification for blind people who have, in the past, not had their support needs identified in DLA claims.  It seems an inefficient use of resources to see this hard-won right jeopardised in August 2011 when the proposed changes may take effect. 

Several respondents to the consultation were concerned about the proposed involvement of ATOS in the assessment of DLA.  ATOS has a revenue of 5.1 billion euros and despite tripling profits, has been awarded a further £300 million contract by DWP to deliver 'work capability assessments' which have been criticised by disabled people and several organisations for the inequity and indignity of their provision, particularly for disabled people with access and support needs or impairments which vary from day-to-day or deteriorate over time (Papworth Trust, 2009).  Awarding an assessment contract to a not-for-profit group, by transparent tender, which does not benefit from payment by results, would perhaps give greater value for the tax-payer? 

Barriers to taking part in the consultation

This consultation was made available predominantly through the internet.  However, of those in receipt of DLA, 37% have never used a computer, while only 37% have used the internet.   Our contributing organisations of disabled people are all relatively well known and linked-in organisations, but were not aware of any public consultation events - either regionally or nationally - that we, and / or the people we work with, could have attended.  By not understanding the fundamental barriers that disabled people face, by failing to resource events and access for disabled and Deaf people to take part in the consultation process (in a way that has been done with high impact changes proposed in the past), DWP have failed to recognise the disproportionate costs which disabled and Deaf people and their organisations incur in resourcing PA support, accessible transport, BSL / English interpretation and assistive technology necessary for disabled people to engage with this process.   

Conclusion

The evidence demonstrates that Disability Living Allowance is still an essential component in disabled people’s lives; to reduce, restrict or remove it would compound the inequalities disabled people face and threaten some of the benefits which are available in the UK.  Given the history of discrimination and exclusion of disabled people which still remains in the inequality experienced by disabled people today, it is a dangerous move to further erode the lifeline of disabled people’s benefits which assist in helping some disabled people stay out of homelessness, expensive acute health services and abuse.  By protecting DLA and improving funding for organisations run and controlled by disabled people, independent living, volunteering and employment will be available more equitably to disabled people, who can then enjoy an improvement in inclusion, aspirations and life chances, to equality in the next fifteen years. 

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