Independent Review of Adult Disability Payment (ADP): Analysis of responses to a public consultation and call for evidence

9. Review periods and indefinite awards

This chapter analyses responses to questions about the review periods for awards. Most reviews of entitlement to Adult Disability Payment are between two and 10 years apart, depending on when a person’s needs are likely to have changed. This is to ensure their payment continues at the right level.

Some people may not be asked to take part in a review of their entitlement. This is called an indefinite award and applies to people whose needs are unlikely to change and who already receive the enhanced rate of the daily living and mobility components.

Key findings

• Fewer than one in ten (7%) consultation respondents had received an indefinite award. Those who had described positive improvements to their quality of life as a result. This included improved access to care, financial stability, and reduced stress about future Adult Disability Payment applications. These positive impacts were also reflected in call for evidence responses.
• Calls for improved communication were made by some. Call for evidence respondents requested clearer indefinite award letters, while a few consultation respondents noted the confusion they had experienced due to receiving their first payment before their award letter.
• Two fifths (65%) of consultation respondents had experienced a review of their entitlement to Adult Disability Payment. Respondents were positive about the lack of face-to-face assessments during the review process and felt that communication leading up to the review was clear. However, reducing the waiting time to hear about review outcomes and more communication through text or email were mentioned as areas for improvement.
• Respondents typically favoured using longer review periods, suggesting these would reduce clients’ stress and anxiety and provide greater financial stability. A few questioned why permanent or deteriorating conditions were still given review periods or called for greater use of indefinite awards for such conditions.

Indefinite Awards

Consultation

Q17A. Have you ever received an indefinite award for Adult Disability Payment?

Fewer than one in ten (7%) of those answering had received an indefinite award for Adult Disability Payment. The vast majority (84%) had not and one in ten (9%) were unsure.

Q17B. If you said “yes”, how did that make you feel?

In line with the closed question results, only a small number of consultation respondents provided a comment at Q17B. Of those who commented, the most prevalent theme was that an indefinite award provided clients with a greater sense of security. One individual also described a sense of relief.

Q17C. What impact did this have on your quality of life?

Fewer than one in 10 respondents provided a comment at Q17C, covering a range of improvements on the quality of life including:

• Improved access to care as they are now able to plan and decide upon appropriate care knowing their award will not be adjusted in the future.
• Financial security and stability.
• Reduced stress and anxiety around Adult Disability Payment and the possibility of being judged or treated without respect.

Q17D. Was the reason for this decision communicated clearly?

Among the very small number of respondents who had received an indefinite award, two of the three who answered felt the reason for the decision was communicated clearly. The other respondent was unsure.

Q17E. How could your experience of receiving an indefinite award be improved?

Only three individuals provided responses to Q17E. Two had a positive experience and did not think anything could be improved. The other individual recommended better communication as their payment arrived before their award letter.

“The letter should have arrived before, or on the same day, the money went into my bank account. Other than that I don't think it could be improved.” - Individual

Call for Evidence

People may receive an Adult Disability Payment award without a review period (also known as an “indefinite award”) if their needs are highly unlikely to change in the future.

In relation to Adult Disability Payment, do you have any evidence about:

Q13A. How clearly the decision to make an indefinite award was explained?

Q13B. Whether or not people understand why they have or have not been given an indefinite award?

Q13C. What were people’s experiences of having an indefinite award? This could include the impact that having an indefinite award has on people’s quality of life compared to people who have had a review period set.

Just over a quarter of call for evidence respondents provided comments at Q13A, one in six at 13B and just under one fifth answered 13C.

Better communication of indefinite award

At Q13A and 13B the most prevalent theme was a request for better communication when an applicant receives an indefinite award. Respondents suggested that it be written more clearly in all correspondence, on case files and with discussion with individuals and carers. One Parent Family Scotland suggested that the award letter also be provided in an easy read format. One anonymous organisation noted that their clients found the award letters too long and complex to understand that they had been awarded an indefinite award.

Respondents were confused about whether the indefinite award was a lifetime award and whether clients with indefinite awards will still eventually have another review, suggesting that further clarity and explanation is still required. MS Society Scotland noted that in collecting evidence for the call for evidence, they were made aware that some of their members did not know that an indefinite award was available under Adult Disability Payment.

While not directly answering the question, some respondents at both questions reiterated their belief that indefinite awards should be provided to people with permanent, terminal or deteriorating conditions. They explained that the award letters need to be clearer as to why those with permanent conditions do not receive indefinite awards.

“From our engagement with people with dementia and their carers, it appears that there is a lack of clarity around decisions not to award Adult Disability Payment indefinitely for people with conditions, such as dementia, that are progressive, terminal conditions. While some people with dementia who claim Adult Disability Payment are awarded the benefit indefinitely, others are awarded it for a fixed period with the requirement to renew their claim in future. Given that dementia will inevitably see a worsening of symptoms over time with no prospect of improvement, people with dementia and their carers struggle to understand why there would be any need to review a decision in these circumstances.” - Alzheimer Scotland

Impact of an indefinite award

The most prevalent theme in response to Q13C was that indefinite awards improve clients’ wellbeing and relieve the stress associated with future applications or reviews. Others noted that they allow clients to feel financially stable and plan their care going forward.

“Claimants have a positive experience and are relieved that they have an indefinite award. It gives re-assurance that there benefit will stop at the point of renewal and that they won’t have to have to go through a cycle of future re-determinations and appeals.” - Glasgow City Council

“The award of Adult Disability Payment on an indefinite basis offers reassurance and certainty about entitlement which leads to better financial security. For example, people with dementia who have an indefinite award of Adult Disability Payment feel more able to source ongoing care and support services since an indefinite award provides them with a secure source of income that enables them to engage services without the risk that this might not be possible in the event that their award ends and is not renewed.” - Alzheimer Scotland

Alzheimer Scotland noted that where it was necessary for clients to provide confirmation of their indefinite award for other purposes, getting duplicate award letters or certificates was a very difficult and lengthy procedure. They recommended making it easier to access this service through Social Security Scotland.

Review periods

Q18A. Thinking about review periods for entitlement to Adult Disability Payment, have you ever received an Adult Disability Payment award that is subject to a review period?

Two thirds (65%) of those who answered Q18A indicated they had received an award that is subject to a review period. Just over one quarter (28%) had not, and 7% were unsure.

Q18B. If you said “yes”, what is the impact of having a longer review period on the quality of life of a disabled person?

Reduced stress or anxiety

Just under half of respondents left an open comment at Q18B. The most prevalent theme, mentioned by many, was that longer review periods would positively reduce clients’ stress and anxiety and allow for extended periods of better wellbeing between reviews.

“I have received reward periods of 3 to 5 years. As someone who was born with a condition that impacts my daily life and will never improve, longer review periods give you a sense of relief that you will not continually be subjected to evaluations and reassessments which add to the daily stress and anxiety of living with a condition that daily impacts your life.” - Individual

Some described the stress of review periods and their uncertainty about the process. Several provided details of their experiences with reviews previously, which they described as terrifying, or filled with anxiety and depression. Given the timeframes noted in responses, it is assumed that most of these reviews were conducted by DWP in relation to Personal Independence Payment. At engagement events, it was acknowledged that Adult Disability Payment generally provided longer review periods than Personal Independence Payment, and this was something participants appreciated.

Greater financial security

The security of planning finances and managing the cost of care was mentioned by some. Respondents noted that longer review periods provide clients with long-term certainty. For example, financial security provided one individual with a better quality of life as it provided them access to the Accessible Vehicles and Equipment (AVE) Scheme.

Reviews for permanent conditions

Although not directly related to the question, noting the positive impact of longer review periods, a small number questioned why they needed to undergo reviews when their conditions were permanent and either unchanging or progressively worsening. There was also a suggestion at a few events that those with a lifelong condition should be given indefinite awards or that the review period should be based on the prognosis of people’s conditions.

Q18C. Do you feel the reasons for this decision were communicated clearly?

Q18D. Please give reasons for your answer.

Among those who had an award subject to a review period and answered Q18C, there were mixed views on whether the reasons for the decision were communicated clearly. Almost two fifths (38%) felt they had been, 44% that they had not and 18% were unsure.

Better communication needed

Just over one third commented at Q18D. Several thought that the reasons for decisions were not communicated clearly. Almost all of these respondents noted that they were never told why they needed to have a review or why their review was set to the time period stated in the award letter.

“The letter didn’t say why my review would be in two years but I kind of understand why as I explained above some of my conditions could improve or worsen in that time frame.” - Individual

An individual felt that they had received regular reminders of their upcoming review, which continued after the review had been completed. They felt that this was very stressful as they were receiving confusing messaging through text, email and by letter.

Enough detail provided

Two respondents said that they had received enough detail in their award letters. Although one did not explain further, the other noted that their award letter provided details about how the points had been allocated but did not mention anything about review periods.

Q18E. Have you ever experienced a review of your Adult Disability Payment award?

Among those who answered Q18E, three in ten (30%) indicated they had experienced a review, while 65% had not and 6% were unsure. Slightly more respondents answered this question than indicated they were subject to a review period, suggesting a few may have misunderstood this question as being about another part of the process.

Q18F. If you said “yes”, what do you think worked well about this process?

Just under a fifth of respondents provided an open comment at Q18F. A few respondents mentioned they appreciated the ability to submit review paperwork online.

“Communication that review would be coming and option to either complete form online or in writing.” - Individual

Two respondents liked the communication they received leading up to the review. They said they were told about the review in advance and provided with a clear understanding of what to expect.

The lack of face-to-face assessments works well according to two respondents, although neither provided further detail. Related to this, an individual thought that the Adult Disability Payment review process shows that Social Security Scotland trust their clients and the information provided in their applications. This compared positively to their experience with Personal Independence Payment.

“Personally, I think the process worked extremely well and is a definite improvement on the DLA and PIP process in terms of reducing the stress and anxiety that those assessment processes caused.” - Individual

Two individuals felt that they would change nothing about the process, with one explaining they thought it worked well as it is.

Q18G. What would you change about this process?

One in six consultation respondents commented at Q18G. The most prevalent theme was that the wait for a decision was too long. One organisation expressed a view that the process of filling out a review form is also too time consuming.

“To make the waiting time less for a person’s review to be assessed currently I'm waiting 8 months this is my first review since changing over from PIP which was more effective.” - Individual

At Q18F, a few respondents, most of whom were either waiting to hear about the outcome of their review or, in one instance had had their award removed, felt that nothing worked well about the review process.

Two respondents recommended changing the process of reviews entirely. One expressed the view that the review process was demeaning and intrusive and made them feel bad about themselves. However, no suggestions for changing the process were given.

The following points were each mentioned by one respondent:

• A request that all communication be done through text or email.
• For “joined-up thinking” and information sharing, though no information was provided about who should be involved in this.
• A request for more empathetic staff members.
• Tech issues were mentioned by one individual who felt they had received irrelevant and stressful communication regarding their review.

Challenges with reviews were raised in a few engagement events. These included examples of instances where Adult Disability Payment review periods had been shorter than Personal Independence Payment review periods and it was unclear why, reviews provoking anxiety in applicants, a perception that there are inconsistencies with Adult Disability Payment decision-making with the nature of decisions changing over time, and confusion over the timescales for review decisions.

A point raised in one event was confusion over the lack of a separate review form. One participant noted that Social Security Scotland send the change of circumstances form, which causes confusion when it is received by clients. They suggested Social Security Scotland creates or clearly label review forms as such. They also suggested communicating the potential benefits of the review process, such as the possibility of a higher award, and to provide a tick box at the start of the review form asking if anything has changed since the last award, removing the need to fill the form in again if not.