Written evidence from Inclusion London (HAB0064)

 

Inclusion London  

 

Inclusion London is a London-wide user-led organisation which promotes equality for London’s Deaf and Disabled people and provides capacity-building support for over 70 Deaf and Disabled People’s Organisations (DDPOs) in London. Through these organisations, our reach extends to over 70,000 Disabled Londoners.  

Sources of Information

 

This inquiry response is largely based on our response to the recent Health and Disability Benefits Green Paper consultation. Inclusion London conducted two focus groups for the specific purpose of responding to that inquiry. Both were undertaken with our member organisations who provide advocacy and advice to Disabled people regarding benefits.

We also have regular direct engagement with Disabled people across London, who’s experiences have contributed to this response.

Key Points

 

•The current system is over-complicated, and the information about how to apply for benefits is inaccessible, with £16 billion in means-tested benefits remaining unclaimed each year[1].

•There should be better signposting to information, advice and advocacy services for claimants, however, it must be noted that due to cuts to the advice sector, it can be difficult, especially for Disabled people with access needs, to find good and accessible advice[2].

•The DWP must improve the quality of and the number of staff manning their phone lines, so that people are not waiting for long periods of time to get their call answered.

•The benefits system must be made accessible in the first place so that more people can more easily engage with it, and are not forced to reply on help from family or friends, which in many cases is not appropriate or available.

•There must be clear and accessible reasonable adjustments policy which must be widely publicised.  The policy should not only set out existing adjustments the DWP can provide but set out the process of requesting and receiving adjustments in individual cases.

•There must be an effective system of monitoring how well reasonable adjustments are implemented.  Individual communication needs of claimants known to the DWP must be identified and systems put on place to meet those needs during all contact with the DWP or other organisations acting on its behalf.

• Assessments must be redesigned so they are based on the social model, respect Disabled people’s dignity and start from a position of trusting what Disabled people say about their own impairments and needs.

•PIP and WCA descriptors should be changed – many people with additional disability-related costs do not get PIP so criteria must be adapted to ensure that more people are eligible.

•Disabled people with lifelong conditions that will not improve should not be subject to reassessments.

•The DWP must be clearer on the type of medical evidence they are looking for, and Disabled people should not have to pay for said evidence. The DWP should be responsible for collecting medical evidence.

•A range of types of evidence from different professionals should be allowed and equally considered, particularly for those people who do not have evidence from their GPs. This could include social workers, OTs and educational professionals.

•Inclusion London welcomes the announcement from the DWP regarding the recording of assessments.

Applying for Benefits

 

Reasonable adjustments throughout the entire process of applying for disability benefits are crucial in ensuring that Disabled people are able to get the support to which they are entitled. Whilst it is good that the DWP continues to look into and invest in ways to make their services more accessible for Disabled people (as laid out in the recent Health and Disability Benefits Green Paper), the fact of the matter is that there should have always been those provisions put in place as a legal duty under the Equality Act.  For example, Universal Credit and PIP are new benefits systems which have been designed after the Equality Act was in force.  Reasonable adjustments include things such as different ways to apply for benefits, communicate with the DWP, complete forms etc.  We welcome the introduction of online forms, which would make the process easier for some people, however it is shocking that it has taken so many years to do this.  The duty in the Equality Act is anticipatory so everything must be done to ensure people can engage with the system effectively in a variety of ways. 

 

However, reasonable adjustments also must work for individuals.  The DWP should publicise its reasonable adjustments policy which should, besides a standard list of options available, clearly describe the process of requesting and getting adjustments to meet individual needs.   As well as having a standard list of adjustments that Disabled people can request (e.g., communications in different formats, phone or video rather than in person assessments) adjustments should also be available based on the individual needs of the Disabled person. For example, we have had reports that DWP assessors do not have an understanding of trauma – in one case we have heard of a woman who had been sexually abused having her hearing assessed by a male assessor approaching her from behind. This was incredibly traumatic for the woman in question. In this instance, it would have been appropriate, as a reasonable adjustment, to change the assessment. It should also be possible to request a female assessor as a reasonable adjustment for these reasons.  We also know of cases where people requested very minor adjustments for their assessments, such as dimmed lighting, or some extra time for the assessment and the assessment providers did not confirm those would be in place.

Transparency and willingness to learn is also incredibly important when we talk about reasonable adjustments.  As far as we understand it, when challenged under the Equality Act the DWP tends to settle individual cases, imposing non-disclosure agreements on individuals. It is important that the DWP is open about its mistakes and takes those complaints/legal action as an opportunity to learn and improve service rather than silence individuals.

Advice and Advocacy

 

The current disability benefits system is complex and often inaccessible to the Disabled people who need to access it. Many people need help to navigate the system, fill in forms, prepare and send in the correct evidence and to advocate for themselves and their needs. Inclusion London believes that access to independent advocacy and advice is imperative for people who are applying for disability benefits. However, it is important that this is not delivered by the DWP but independent of the government. This would be best placed within local Disabled People’s Organisations whose workforce are people with lived experience of the process and are a trusted source of information, advice, and support; helping people to say what matters to them. Funding DPOs to deliver rights based advocacy to support disabled people to navigate the benefits system would support thousands of us per year and improve outcomes and increase employment opportunities for disabled people.

Advocacy should operate on the following principles:

              Independent;

              Fully funded;

              Accessible;

              Rights based;

              Available at all stages, including challenging decisions.

We are concerned that the Health and Disability Benefits green paper suggests that advocacy must be value for money.  Value for money must be seen in terms of outcomes achieved for individuals, not in terms of the number of people assisted or the number of sessions provided.  Lessons must be learnt from Mental Health advocacy or the Care Act advocacy where budgetary considerations lead to suppression of referrals and often poor quality. 

It is important to proactively ask people about the difficulties they might have applying for benefits or challenging decisions and proactively encourage people to contact the DWP if they have any difficulties.  Currently people are pushed to use help of their informal networks, this does not work for everyone. 

It should also be possible for third sector organisations to refer people for advocacy, when they believe a person meets the test.

It is also vital that the DWP makes it easier for advice and advocacy organisations to act on behalf of individuals they support.  For example, implied consent rules in Universal Credit must be restored.  Many Deaf and Disabled people are disadvantaged by this rule.  Currently advisers and advocates waste a lot of time waiting on the phone for the DWP’s helplines.  The DWP should establish quick and easy channels for those professionals to get in touch.

Improving the Quality of Assessments

 

Inclusion London believes that with both PIP, DLA and Work Capability Assessments, the format of assessments should be at the discretion of the Disabled person having the assessment, with the choice of assessment having no impact on the results of the assessment. Regardless of format, support should be made available so that the assessment is accessible to the Disabled person, and they are able to fully participate – e.g. BSL users should be provided with a BSL interpreter in an in-person assessment or over video call. Furthermore, Inclusion London believes that all assessments, regardless of format, should be recorded and a copy provided to both the assessor and the Disabled people.

If PIP and Work Capability Assessments have to continue taking place, Disabled people should be assured that their assessor has knowledge or expertise in their impairments. Many cases have occurred where Disabled people have been assessed by someone completely inexperienced in their type of impairment – for example, people who experience mental distress being assessed by OTs or physiotherapists.  Although assessments assess functional abilities, not the impairment itself, conclusions in the report are often drawn from impairments.  Without good knowledge assessors are unable to assess fluctuating conditions.  Many assumptions are made on how people present themselves, without taking into consideration the kind of effort that goes into this.  For example, someone could be in pain, but they may not necessarily share this with the assessor, who would not know, unless they had knowledge about the impact of the relevant condition.

The explanations given in reports for the choice of descriptors are often very general, as if they were chosen from a dropdown menu, rather than written about the specific individual.  Too often observations during the assessment contradict with medical or other evidence and are given priority. 

People going through assessments often feel intimidated, not trusted and dismissed, as though they have to prove themselves. 

 

With regard to the PIP descriptors, Disabled people feel that they do not relate to their needs, and are generally an affront to their dignity and privacy. This points to a wider issue with PIP assessments on the whole in that they are conducted from an individual model of disability – this needs to change so they run in line with the social model and promote independent living. Any changes to criteria within the current system should make it easier for Disabled people to claim PIP, as there are many people who have additional disability related costs who currently cannot claim. Inclusion London has also been told by some of its member organisations who provide advice and advocacy on benefits that they have seen assessors who do not understand the criteria that they have to use to judge the level of benefits that someone could receive, this has led to Disabled people needing to go to tribunal to appeal decisions, and those decisions often being overturned. This creates more stress and work for both the Disabled person, the DPO supporting them and the DWP.

With reassessments, the DWP must recognise that for many people, their impairments will not improve, and will likely worsen over time. There should not be repeat assessments for those people. Reassessments should be triggered by the Disabled person in the event that their impairments or health conditions change, rather than by the DWP.

Also, Disabled people have to constantly repeat information about their impairments despite having provided extensive medical evidence, sometimes over years, to the DWP. Assessors should read that information and not have the Disabled person repeat information that has already been provided.

Decision making would be improved if the DWP started with the position that the person applying for benefits is telling the truth, and they were not so preoccupied with catching people out. Assessments, and benefits as a whole, must take a rights based approach, encompassing all the pillars of independent living, rather than just concentrating on getting people back into the workplace.

Medical Evidence

 

In relation to medical evidence, there should be a variety of evidence that could contribute to making PIP and WCA decisions, recognising that not all Disabled people will have frequent contact with medical professionals. This could include older documents from when they are first diagnosed with having a certain impairment, and OT and social services records as well as medical evidence. Many Disabled people do not have frequent contact with their GP, particularly if their impairment is relatively stable and unlikely to change. Additionally, the cost of obtaining medical records and evidence can be a huge barrier to Disabled people accessing benefits, so it should be made free to ask for medical evidence for benefit assessments.

The descriptors in PIP and WCA are not fit for purpose. As well as being highly intrusive and an affront to people’s dignity, they also do not line up with the type of medical evidence that individuals are generally able to get, and do not conform with the questioning that they often experience in PIP and WCA assessments. Whether or not the descriptors do change, our members told us that it would be useful to send descriptors to medical professionals and other bodies that can provide evidence so they can tailor evidence accordingly.

With regards to sending in evidence, our members have told us that just having a mailing address to post evidence to poses difficulties for their service users. As well as access issues stemming from having to physically post evidence, the DWP does not provide a postcode, so it cannot be sent on recorded delivery. This means there is no way to know or prove that evidence has been received, and no way to track it in the event that potentially important and private information is lost. Furthermore, they have expressed to us that it would be useful to have an email address that evidence, as well as other queries, could be sent to. As well as generally improving the accessibility of DWP services, this would also be a way of ensuring a trail of evidence if it is needed.

 

November 2021


[1] https://www.entitledto.co.uk/blog/2020/february/16-billion-remains-unclaimed-in-means-tested-benefits-each-year/

[2] https://asauk.org.uk/wp-content/uploads/2020/07/Advising-Londoners-Report-30072020-1.pdf

[3] https://www.commissiononsocialsecurity.org/draft-proposals