Experts With Lived Experience Proposal For A PIP Replacement: Additional Costs Disability Payment

The Commission are a group of people with lived experience of the current social security system – “In other words, we are experts in the social security system and what works, and what doesn’t.”

Like the rest of the Commission’s work, it puts forward proposals for a reimagined social security system that is designed by and works for those of who rely on it. It would be vastly different to the current system. 

The proposed payment aims to provide fair, dignified, and holistic support to Deaf and Disabled people, addressing the additional costs and systemic barriers that they face. 

Among the Commission’s detailed proposals include the following:

Fundamentals

This section is about the fundamentals that need to be in place for an Additional Costs Disability Payment to work

• The existing social security system should be overhauled, so the DWP no longer exists, and an Additional Costs Disability Payment is administered by a new Department of Social Security or a Department of Independent Living. 
• A national independent advocacy service should be established, serving as an umbrella service largely made up of Deaf and Disabled People’s Organisations, and organisations led by experts by experience. No private for-profit companies should take part.
• The government should invest in creating, building and developing Deaf and Disabled People’s Organisations, to help enable them to deliver such an advocacy service.
• The government should establish a national body to research the additional costs Deaf and disabled people face, including those related to intersectional issues and systemic discrimination. The evidence from this research should inform the varying levels of payment.
• The success of an Additional Costs Disability Payment would rely upon the establishment of a National Independent Living Service, to replace existing social care. Detail of this proposal sits outside the remit of this work, but more information can be found here: https://dpac.uk.net/2019/04/a-national-independent-living-support-service/ 
• The success of an Additional Costs Disability Payment would be dependent upon appropriate nationwide investment in local community services, such as housing, health and transportation.
• An Additional Costs Disability Payment should be issued as a regular cash/bank transfer payment, and not be paid in vouchers. People should not be required to provide receipts in any way to justify their spending.
• A genuine co-produced standards charter would actively monitor safety and potential harm related to the Additional Costs Disability Payment on an ongoing basis, via an active feedback mechanism.
• Good communication must be at the core of an Additional Costs Disability Payment - including comprehensive language translation of all related information.

Criteria to apply: 

This section is about the criteria involved in applying for an Additional Costs Disability Payment.

• Intended recipients of the Additional Costs Disability Payment would be those experiencing a physical and/or mental distress/health condition/impairment which impacts on their daily life, leading to additional costs and social/environmental barriers. This includes where the impact fluctuates and is unpredictable.

Application Process:

This section is about the application process involved in applying for an Additional Costs Disability Payment.

• New claims have the option to use the independent advocacy service made up of Deaf and Disabled People’s Organisations (mentioned in Section 1, Fundamentals).
• If someone wants to use the advocacy service they would be provided with an advocate who could work with them or a family member/friend on their claim. They would have a choice over who their advocate is.
• The applicant would work with an advocate to build a claim, led by a holistic approach to the applicant’s experience of distress/impairment/health condition, and what additional costs/barriers they face.
• The advocate should continue to support the applicant until a claim is settled.
• Applicants could request another advocate if the one they are provided does not work well with them.
• There should be an independent complaints process if there are any problems with the advocate or the relevant government department.
• All applicants would be provided with a booklet which can be used as guidance for their application, but it would have prompts rather than set questions 
• Applicants would have the choice to go through the process without an advocate if they wished to, or to appoint someone they know to assist them if they preferred.

Eligibility criteria/evidence used for making a decision:

This section is about the eligibility criteria/ evidence used when a decision is made for an Additional Costs Disability Payment.

• Eligibility for the Additional Costs Disability Payment would take into consideration an applicant’s experience of their body and mind, the impact of a distress/impairment/health condition, and the additional costs and barriers they experience. It would not be tied to, or determined by, a medical diagnosis or criteria.
• All applicants would be entitled to provide evidence, and they would be free to choose whatever they wish to provide. This includes testimony from a friend or family member. There would be safeguarding policies in place to protect the interests of applicants
• The principal consideration for eligibility would be an applicant’s own assessment of their distress/impairment/health condition, and the additional costs and barriers they experience. This would also take into account that for some, their distress or impairment may make this difficult to understand or articulate. Additionally, an applicant’s understanding may fluctuate depending on their circumstances at the time of assessment.
• Assessors/decision makers in this process would be required to have a good understanding of the Social Model of Disability, including the impact of intersectional issues and systemic discrimination. This would need to be their specialism, and a necessity that they understand the barriers and additional costs disabled people can experience.

Assessment process

This section is about the assessment process involved in applying for an Additional Costs Disability Payment.

• Applicants should not be required to comply with imposed deadlines in the assessment and application process.
• The assessment process will be guided by looking at different areas of daily life, but there would not be a points system. Instead the impact of the applicant’s distress/impairment/health condition and experience of barriers will be considered holistically.
• The focus and overarching question guiding the assessment would be: What areas of the applicant’s life does their distress/impairment/health condition impact on and how? What barriers do they experience that prevent them from living the life they might wish? This should take into account the energy and time required to prepare to do a given task, the lasting/knock-on impact of undertaking such a task, and the cumulative impact of this. This discussion should be open-ended and led by and tailored to the person applying.
• There would be an understanding that people applying for an Additional Costs Disability Payment may not always be aware, or able to speak to what barriers or additional costs they face and part of the advocate’s role would be to help them think about these.
• The assessor’s and advocate's roles would be to listen to what the applicant feels is important in their lives, and should not rely upon predetermined questions or activities.  
• Assessors and advocates would be required to consider that applicants may have stopped engaging in certain activities completely due to the many barriers/additional costs they face. Where possible, applicants should be supported, and prompted to include these in their claim.
• The guiding principle for assessors should be to consider what applicants wish to do in order to have what would be considered by them a ‘good life’. Assessors should consider what barriers applicants experience, with strong consideration given to the intersectional and systemic barriers applicants face.
• Instead of resting with a single decision maker, decisions in the assessment process (including overall decision and the level of support awarded) would be decided by a panel of three parties. These would be the person claiming and any advocate or support people they chose; someone independent who has lived experience of disability; and a representative for the state department.

Eligibility criteria/evidence used for making a decision:

This section is about the eligibility criteria/ evidence used when a decision is made for an Additional Costs Disability Payment.

• Eligibility for the Additional Costs Disability Payment would take into consideration an applicant’s experience of their body and mind, the impact of a distress/impairment/health condition, and the additional costs and barriers they experience. It would not be tied to, or determined by, a medical diagnosis or criteria.
• All applicants would be entitled to provide evidence, and they would be free to choose whatever they wish to provide. This includes testimony from a friend or family member. There would be safeguarding policies in place to protect the interests of applicants
• The principal consideration for eligibility would be an applicant’s own assessment of their distress/impairment/health condition, and the additional costs and barriers they experience. This would also take into account that for some, their distress or impairment may make this difficult to understand or articulate. Additionally, an applicant’s understanding may fluctuate depending on their circumstances at the time of assessment.
• Assessors/decision makers in this process would be required to have a good understanding of the Social Model of Disability, including the impact of intersectional issues and systemic discrimination. This would need to be their specialism, and a necessity that they understand the barriers and additional costs disabled people can experience.
• Applications could not be refused without good reason. There would be built-in constraints on decision makers to determine the limited scenarios in which refusal is appropriate.
• Reassessments of claims would not take place automatically. Instead, reassessment would only take place at the applicant's request, with a duty to report changes. However, this would be with a recognition that an improvement in an applicant's circumstances may be due to receiving the Additional Costs Disability Payment itself: in which case, the award would be retained. Any reduction in award would be required to be gradual and tapered, and if withdrawal of funds leads to a worsening of health and an increase in additional costs, the original award would be reinstated quickly.

Challenging decisions:

This section is about challenging decisions in relation to an Additional Costs Disability Payment.

• When a new claim is made, the default position for the relevant government department would be that the claim is honoured.
• If a claim is denied or disagreed with, the burden of proof would be on the decision makers to justify why they disagree with a claim.
• If the decision is to deny a claim or for a reduced claim then the applicant would be told if there is any evidence they could provide which could change this
• The final decision would be required to be provided in an accessible way. If a claim is rejected, or a lower amount awarded, the decision would need to be provided in an appropriate way. Any such communication would require an understanding of how difficult such a decision might be to receive.
• In cases where an applicant wishes to challenge a decision, support would continue to be available from an advocate to assist with this.
• Legal aid would be made available to applicants who challenge a decision to the tribunal stage.
• Under this process, it is anticipated that very few Additional Costs Disability Payment claims are expected to reach Social Security (Benefits) Tribunal. However, where applicants do appeal to a Tribunal, cases will not take place in a court environment, which can be considered hostile and intimidating.
• When decisions are successfully challenged, the relevant government department that took an original decision would be required to report their mistakes, face appropriate consequences and report lessons learned.

After a decision:

This section is about after a decision is made.

• Passport to other support: While building a claim, applicants would be asked to indicate if housing, transport, access to health care/treatment/community engagement, or issues related to intersectionality/systemic abuse, are making their impairment/health condition worse.
• In such cases an action plan would be produced to address these issues, and the advocacy service would liaise with other services to address them. Applicants would be entitled to an Advocate Action Plan regardless as to whether or not their Additional Costs Disability Payment proves successful.
• This process would also be an opportunity to identify where applicants experience barriers and additional costs, and consider what they may wish to spend payments on. This process would be for the applicant’s benefit and information. In many cases, this would also likely include a referral to the National Independent Living Service.
• A new scheme would be developed to provide accessible vehicles, wheelchairs, scooters and aids at a reduced rate, which would not require applicants to use their payments to access this. This would include a similar tax incentive as Motability, but there would be oversights to prevent a monopoly forming and smaller/independent services and business could more easily be part of the scheme. This scheme would also include a guarantee from the government to allow companies to provide contracts to applicants who might have lower credit ratings.

Further work needed:

• Research into additional costs disabled people experience and research which specifically addresses issues for people experiencing intersectional/systemic discrimination 
• Small scale trials to see how such a form of assessment would work in practice and learn how to improve it - this would also help develop a more robust process

Wider benefits of such a process:

• Reduced barriers to Deaf and disabled people to be able to fully participate in society and their local community.
• Improved health and wellbeing due to Deaf and disabled people being able to cover the additional costs they experience.
• Reduced levels of poverty. 
• Increased investment in local economies.

The Commissions full proposals for a PIP replacement: Additional Costs Disability Payment is available from commissiononsocialsecurity.org.uk.

Information about the The Commission on Social Security, led by experts with lived experience and its work is also available from commissiononsocialsecurity.org.uk.