Written evidence submitted by Disability Wales (BSW0049)
This Disability Wales Response covers how the current benefits system is not fit for its purpose and has impacted the lives of disabled people in Wales.
It goes through the key issues that arose from the consultation with members, primarily focusing on the accessibility of the system, concerns around the legal system and further equality issues. Following this, it moves on to whether this is consistent across the UK where we found that although generally, it is consistent, differences do arise as a result of other devolved policy areas and the unique Welsh context.
It then considers whether the pandemic has changed support needs and the effectiveness of the Government response to this. We found that although the numbers of those who did and did not experience changes were fairly equal, of those who did experience changes, the UK Government response was not effective.
It then moves onto the key changes that the UK Government can make in Wales. This section primarily focuses on two areas, improving the accessibility of the system and actively combating negative stereotypes of disabled people that exist within the system.
The final two sections focus on the questions of further devolution and the proposed UBI pilot. We found that the majority of our members do support further devolution due to their perceptions of the different priorities of the Welsh Government in comparison to the UK
Government. The response to a UBI was more mixed as people tended to find that it could be a useful tool for poverty alleviation, but measures need to be put into place to ensure that disabled people are not left behind.
Disability Wales is the national body of disabled people’s organisations in Wales. We strive to promote the rights and equality of disabled people in Wales. We have member organisations from across Wales working locally including everyone from local DPOs, universities and trade unions.
We strive to promote the social model of disability and independent living in Wales.
The Social Model of Disability is a model that focuses on the difference between “impairment” and “disability”. A person’s impairment is a long-term health condition/ illness which impacts their day-to-day life.
Disability however is the result of social, institutional and structural barriers that people face. This puts the onus on society to adapt and change to fit people, as opposed to supporting that implementing these barriers that “disable” people.
This response is informed by a survey conducted by Disability Wales. The survey questions were based on those provided by the terms of reference and were answered by 85 people. Of the 85 people who responded, 65 are disabled themselves, 13 people responded on the behalf of someone else and 7 were organisations working with disabled people.
This is also informed by other research we have done, such as past focus groups and discussions with our members.
Some of the questions asked have been combined in this response, or had answers that were extremely similar, so they have been absorbed into the general response.
Our members identified several key challenges with the current system. These challenges range from simple changes to large structural and institutional barriers that stop the current system from operating effectively and providing further obstacles for disabled people to live independent lives.
Accessibility, or lack thereof, of the benefits system, is a key challenge identified by the disabled people that we asked. In this challenge, we see a wide disparity of the type of barriers faced by disabled people and this is a key area of concern for us.
The application process is inaccessible to many disabled people that we spoke to. The forms can be extremely difficult for some people to fill out without support. Some respondents had family members to help them, but some reported that there is a clear lack of admin support for people who are attempting to go through the application process and that this contributes to stress and anxiety about the process.
Further to this, some language issues have been reported to us. For example, lack of support for those with lower literacy levels or whose first language isn’t English. Lack of availability of Welsh-language support and information was also a key factor raised. Lack of availability of Easy Read information and forms was also raised to us. To ensure that the process is accessible to all who need it, addressing these more simple concerns should be a priority.
The streamlining of the benefits system has also provided an access barrier to some disabled people we spoke to. Although we understand the rationale behind it, disabled people have told us that for them it has in reality made the system more complicated for them to access. This is because they do not know where individual responsibility for an area is.
Digital exclusion has also been raised to us as a major issue. Especially during the COVID-19 pandemic, services have increasingly begun to move online. Although this has made them more accessible for some, the disproportionately large number of disabled people who are digitally excluded, be that due to poverty or technological illiteracy, and are excluded from this. This is coupled with lack of access to the necessary software, e.g. closed libraries or internet cafes. Provision must be made to ensure that a blended approach is taken forward, that can adjust to the individual support needs of people.
These key access issues join forces to create a system that is not fit for purpose. Disabled people don’t know what their entitlement is, how to access it and the systems in place to help hold it accountable.
Disabled people have reported to us that the waiting times and delays in the benefits system are a key challenge for them. We have heard stories of extremely long delays in accessing appointments, long wait times between appointments, unnecessary tribunal processes continuing to prolong the process. Alongside the well-reported wait times to access the funds once approved.
These delays have resulted in significant loss of income amongst disabled people. These benefits are how disabled people pay for food, rent, and support for any dependents. Everyone deserves to know when money is coming into their accounts and disabled people should not be excluded from this or go weeks without any income whatsoever. More must be done to ensure that disabled people aren’t facing food insecurity and loss of income whilst going through the system.
Another major criticism of the current system is that disabled people have told us that the system takes a “one size fits all” approach to supporting disabled people.
One of the biggest issues raised as a result of this is unnecessary reassessments for those with long-term health conditions that will not see a change in their circumstances. As mentioned previously, the assessment process can be extremely traumatic, costly and time-consuming for disabled people. Disabled people with long term conditions must repeat this process unnecessarily. They also report that often, their application will be rejected, only for them to have to go through the tribunal approach to re-secure their source of income, despite no change in their circumstances. Disabled people have told us that this has left them with constant anxiety around a change in their financial circumstances.
We have had mixed feedback on the increase in phone appointments during the pandemic. Some have found it extremely beneficial to them as it has made the process more accessible whereas for others it has not worked as well and they have found that it increased anxiety over appointments. Going into the future, we would recommend a blended approach to these appointments to allow them to better suit the support needs of individuals. Considering that these support needs may differ between people with the same impairment, such as for those with anxiety, some find in-person appointments easier, some find phone appointments easier, this must be tailored to individuals.
For any policy or programme to function effectively, there must be a useful route for the service users to be able to hold that policy or programme to account. For those within the benefits system, the tribunal process is supposed to be this route, but it is not fit for purpose.
Lack of access to legal aid is a key issue here. Going through the legal system is an extremely costly and time-consuming process that is extremely inaccessible to many. This inaccessibility stems not just from the system itself, but also from the financial strain caused. Losing legal aid also meant losing one of the only tools that supported disabled people trying to seek justice within the benefits system.
Often disabled people have to rely on informal support, such as admin help from friends or family members, to navigate the legal system. However, it is not necessarily the case that informal supporters will have adequate knowledge of the system or disabled people rights to be able to navigate it appropriately.
Disability Wales would recommend that legal aid is reinstated as soon as possible. Disability Wales also believes that there needs to be infrastructure in place to support disabled people navigating the tribunal system, especially for those who are on lower income.
Unfortunately, despite the landmark win for same-sex marriage in 2011, there still is not marriage equality in the UK. Many Disabled people in the UK are forced to choose between their source of income and moving in with/ marrying a partner.
When moving in with a long term partner or marrying them, disabled people who receive benefits often lose some of their benefit entitlement due to their partner’s income. This means that the decision to take that next step with their partner must be informed by the knowledge that this will result in a loss of income. For disabled people of low socioeconomic status, this can often be enough to prevent them from being able to take this step with a loved one.
There is also a gendered aspect to this. Forcing disabled people to only rely on their partner’s income without any money coming in that is their own, leaves many vulnerable to abuse. Domestic abuse and financial abuse, in particular, is more likely to impact disabled people, as being reliant on their partner’s income, allows an abusive partner to take advantage of this. It also makes it more difficult for disabled people to leave their abuser as they do not have the financial independence to escape the situation.
This violates multiple human rights laws. Namely Article 23 of the United Nations Convention on the Rights of Disabled People, which the UK Government ratified in 2009, giving disabled people the right to family life and the right to engage in relationships equal to that of non-disabled people. By forcing them to make the often impossible choice between income and their relationship, disabled people in the UK do not have the same right to a family and to engage in relationships as non-disabled people. This response frames this as a choice, but it is a false choice, when a person is being asked to choose between food and their relationship, their relationship is not a real option as there is no conceivable way that they could choose that relationship.
There is also a strong case to argue that this goes against the Convention on the Elimination of Discrimination against Women. This policy leaves the door open to financial abuse and many disabled women have reached out to us concerned that disabled people will be forced to stay in abusive relationships due to not having the financial power to leave. This is an issue that disproportionately impacts women and must be addressed.
Of the 85 disabled people and disabled people’s organisations surveyed, 22.5% of them thought that these challenges differed, 60% thought the challenges were the same and 17.5% were not sure.
Of those who said that the challenges differed, they said that it was due to the different set of circumstances in Wales. This includes both the higher poverty rates and proportion of disabled people, with around 1 in 5 people in Wales being disabled. Many people thought that that the difference was due to the impact of devolved policy. There was a strong feeling that the devolved administration gave more credence to social justice and issues around independent living, therefore disabled people in Wales still had a different experience to disabled people in England on reserved issues.
However the vast majority of people surveyed thought that these issues were consistent across the UK as welfare is a reserved area and therefore these same policies applied to everyone.
Of those asked, 43% of people said that their support needs had changed during the pandemic and 57% reported that their support needs had remained the same.
Of those who experienced a change in their support needs, the reported impacts included:
Of the people who responded to us, 5% of people thought that the UK Government response had been effective, 73% of people thought that it had not been effective and 22% of people were not sure.
There is a very clear consensus that the response from the UK Government was not effective at supporting disabled people’s needs. The reasons given for this are that the pandemic had made it extremely difficult to speak to officials directly and as well as difficulty discerning where responsibility for what area lies, have made it hard for disabled people to engage with the DWP. They felt that resources have been poorly managed throughout the pandemic and that changes made didn’t adequately reflect the change in circumstances, for example, the lack of consideration given to legacy benefits. Many disabled people thought that the £20 raise in Universal Credit should stay as prices of essentials such as food have risen during the pandemic.
One improvement suggested is to start actively tackling attitudes towards disabled people both within and outside the DWP. Disability Equality Training, which has been co-produced with disabled people and their organisations, should be mandatory for all staff. Disabled people have told us that they often feel dehumanised or shamed by staff who do not have a broad understanding of disability and being a disabled person. This is a key step to tackling this.
The UK Government should also actively challenge the demonization of disabled people. Tackling the stereotype that disabled people are “benefit scroungers” and are “faking” it for money is an essential task to improving both the lives of disabled people and the functioning of the benefits system. The widespread misunderstanding of people who use this system must be addressed.
More must be done to understand the additional barriers that some people experience. For example, language barriers and immigration status. These are some key issues that stop disabled people, especially disabled people who are an ethnic minority, from being able to access the appropriate support for them. Staff must also be trained in cultural competency and anti-racism and independent advisors must be available for these people.
There must be changes to the assessment process and the system should be redesigned. This redesign should prioritise the social model of disability and independent living. It should happen co-productively with disabled people, disabled people’s organisations and service users to ensure that it understands and can meet their needs effectively.
More support throughout the process should also be available. This support should range from support with the admin tasks such as help with the paperwork to mental health support and legal aid. All information and forms need to also be available in Easy Read.
Respondents to our survey showed strong support for further devolution. 72% of the respondents supported further devolution, whereas 28% of respondents were against it. Further devolution was also brought up consistently throughout the survey as a potential solution to some of the issues impacting the benefits system in Wales.
Respondents generally supported further devolution due to the perception that the Welsh Government are more attuned to disabled people’s issues and work more on independent living. We also heard that the pandemic has caused people to look at the policy divergence between the Welsh and UK Government’s and they prefer the Welsh Government’s approach. Some of the more cautious policy in regards to the pandemic has increased trust with the Welsh Government, while there are still high levels of distrust towards the UK Government.
Respondents who disagreed tended to cite the pandemic response as their reason to disagree as well, with some preferring a more consistent response across the UK. The ability of the Senedd to take on further large policy areas was also brought into question.
Overall, we would support exploring further devolution, especially in areas such as welfare, specific benefits such as PIP or the legal system. However, this support takes into account the capacity of the Senedd as it is a much smaller institution than other devolved administrations, such as Holyrood.
Our respondents had a mixed response to the proposed UBI pilot in Wales. For those who supported the pilot scheme, the reason given is that they thought that a UBI would be an effective way to alleviate the high levels of poverty in Wales. There was also support for it being a universal measure as it would mean that disabled people would not have to deal with an application process at all to access the money. As mentioned in this response, the current application process can be time-consuming, costly, humiliating and traumatic for disabled people, therefore this is a big draw.
However, some people responded negatively as they were worried about accessing the additional support that they need. There is an additional cost to being a disabled person, for example buying needed equipment or meeting special diets. They were concerned that this would not be accounted for and therefore disabled people would still be worse off. There was also concern that there would not be the surrounding policies to help support it, especially when it comes to addressing relative poverty. For example, policies in place to ensure that landlords would not just raise the price of rents, therefore leaving people no better off in reality. Lastly, some criticised the universality of this as they believed it was costly and unnecessary to be giving money to those who are already wealthy. All of these arguments are also made excellently in the DPAC report on the impact of a UBI on disabled people “UBI: Solution or Illusion”.
Some people who support the idea of a UBI in principle also told us that they disagreed with the particular Welsh Government pilot. This is because they felt that a pilot which involves a certain group, in this case, care leavers, would not be sufficient to demonstrate the impacts of a universal system on a wider population.
Overall, there are mixed opinions on the topic of UBI and the proposed pilot. However, we believe that it is vital that the Welsh Government and the DWP work together to ensure that no disabled person is made worse off as a result of this.
To conclude, it has been made very clear to us that the current system is not fit for purpose. Disabled people have told us about feeling humiliated, ignored and left behind by the current system. We have heard that the system is inaccessible, that the attitudes within it can be prejudiced against disabled people and that it has resulted in disabled people not being able to live independent lives. Changes must be made to the system in Wales and across the UK in order to build a more equal future.
 UN Department of Economic and Social Affairs, “Article 23: Respect for home and the family”, https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-23-respect-for-home-and-the-family.html
 UN Office of the High Commissioner, “Convention on the Elimination of All Forms of Discrimination against Women New York, 18 December 1979”, https://www.ohchr.org/EN/ProfessionalInterest/Pages/CEDAW.aspx
 Disabled People Against Cuts, “UBI: Solution or Illusion”, 2019, https://dpac.uk.net/wp-content/uploads/2019/01/UBI-Solution-or-Illusion.pdf