Adult Disability Payment: consultation analysis

Our analysis of responses to the consultation on Adult Disability Payment regulations undertaken between 21 December 2020 and 15 March 2021.

Practitioner Qualifications and Experience

Qualifications and experience necessary to carry out Assessments

Where a consultation is required in order to determine whether an individual is entitled to receive Adult Disability Payment, this must be carried out by a qualified practitioner. Regulation 38 sets out the requirement for practitioners to have been employed for a cumulative period of at least two years, in the direct provision to individuals of health care or social care services. It also sets out the specific experience required in cases that require consideration of the individual's mental health condition or conditions, and/or individual's learning disability or disabilities.

Just over two thirds (69%) of respondents who answered the question believed that the regulations relating to qualifications and experiences reflected the policy intent.

Number of Respondents % of Respondents Valid %
Yes 72 57% 69%
No 25 20% 24%
Don't know 7 5% 7%
Missing 23 18% -
Total 127 100% 100%

Many respondents considered the proposals to engage expert practitioners to be an improvement on current process but sought more detail in the regulations.

Removing negative experiences

Importantly, it was hoped this approach would reduce or remove negative experiences similar to those that had been experienced in the past, including practitioners being condescending; demeaning; insensitive; restricted by the Personal Independence Payment script; arranging unnecessary case reviews; informed by outdated research; failing to recognise the severity of the condition; or making incorrect rejection decisions.

Event stakeholders reported that existing examinations were often degrading and distressing. Assessors were described as being unsympathetic and stakeholders felt it was unfair that a stranger had the power to overrule what a doctor or other medical practitioner may decide. Views were expressed that, historically, examinations and assessments often made people feel that they were being judged or treated as being dishonest, with a perception that the process was designed to fail people or catch them out. Applicants often felt pressured to give 'correct' answers to what were often confusing questions, and the existing assessment system was seen as particularly challenging for those with mental health conditions or disabilities.

It was suggested that individuals who were less articulate or less able to explain their health condition historically fared worse in their eligibility considerations, but it was felt that Adult Disability Payment had the potential to help alleviate this problem:

"We believe this has potential to radically improve both the quality of decisions on entitlement and the overall experience of the assessment process for people with mental health problems." (Third Sector Organisation)

Consultations more flexible and person-centred

Consultation respondents and event attendees welcomed the proposals for more flexible consultations as this was more in keeping with the principles of Social Security Scotland, was seen as more person-centred and holistic, allowing people to express themselves more freely than more formal formats allow.

An added benefit of consultations was that they could be carried out remotely (benefitting some of the most remote and isolated individuals), with telephone or virtual consultations also seen as preferable to face-to-face engagement by many (i.e. conducted on a setting that they are familiar and comfortable with). Remote or virtual consultations would also be more accessible for people living with certain types of disabilities and would reduce what people perceived was them being judged informally before the official determination had even begun. It was agreed that the option for in-person consultations should however always be offered, (especially for those who find telephone communication challenging) and retaining 'choice' was key.

One group of event attendees raised concerns that a 'consultation' was just another form of 'assessment' and that people would still have to explain and answer questions about their disability. Being questioned automatically makes people stressed and defensive, it was suggested, and a more suitable method would be to use supporting information so that a consultation did not have to take place at all.

Consideration was also given to the determination tools employed and the appropriateness of these. The challenge of assessing invisible symptoms was highlighted by a number of consultation respondents. The availability of appropriate tools was queried by individuals with autism diagnoses, one had been advised their autism was not severe enough to merit support, another was assessed by a physiotherapist that they believed had no knowledge of neurological development conditions. Additional examples were provided:

"While someone may be able to walk 20 metres the impact that walking that distance may have on an individual needs to be considered when a practitioner is assessing a claim." (Third Sector Organisation)

"I still feel concerned that conditions such as autism will be overlooked and denied if eligibility is based on physical capacity and limitations rather than social and emotional." (Disabled People's Organisation)

"The functional impact of sensory loss is often conducted by individuals that have no knowledge, experience or expertise in the area and failure to assess adequately is compounded by lack of attention to sensory loss in the diagnosis of other conditions (or mis-diagnosis). Ideally the review will address these structural flaws." (Disabled People's Organisation)

Recognising the importance of expertise

When asked for views on whether health and social care practitioners should be able to undertake consultations, there was broad support. The proposal to have practitioners with expertise in specific areas was also welcomed by many consultation respondents and event attendees alike.

Importantly, respondents agreed that practitioners should have awareness of the condition they are assessing. All practitioners should not be expected to have in-depth knowledge of every condition, and so consultation should be undertaken only by a relevant practitioner with an understanding of the condition being consulted on. It was suggested that this may require involving people with lived experience in carrying out consultations.

It was recommended by consultation respondents and event attendees that the professional with the most specialised knowledge of a patient's circumstances should be engaged, rather than a more general health professional, e.g. a psychiatrist for an in-patient in a psychiatric ward would be more appropriate than the patient's General Practitioner. It was also considered essential for practitioners to have a strong understanding of the varying impacts the condition can have on a person's engagement outwith their primary environment.

Although there was a general consensus that the move to consultations conducted by health and social care practitioners was a step in the right direction, several contributors expressed strong objections to being assessed by a social worker or by non-specialist nurses in future consultations.

It was also urged that the quality of engagement with practitioners needed to be consistent. There was some reported inconsistency in historical assessments, and respondents were keen that this should not be carried forward to a model that involves consultations.

Finally, there were some concerns around the impact on the health and social care sector or broadening scope for who could undertake consultations. It was suggested that this was particularly important to consider in a post-COVID-19 environment and policymakers needed to ensure that they did not put a heavy burden on the sector to provide supporting information for disabled people.

Specific training

Event attendees, like consultation respondents, stressed that appropriate training and education of those undertaking consultations was vital. A number of recommendations were made in relation to the skills and training practitioners should possess. In particular, this included themes of mental health; fluctuating and progressive conditions; disability law; stigma; dementia training; independent advocacy; Post Traumatic Stress Disorder; discrimination; equality and diversity; death, dying and bereavement; and social models of disability. In particular, it was felt that practitioners should receive training in appropriate communication. Having practitioners who are supportive, empathetic and compassionate would also help to build trust in the system. It was recommended that training also involve or be led by individuals with lived experience of disability, where possible.

Duration of experience

Despite welcoming the change overall, several respondents suggested the regulations could be more robust than currently proposed, specifically in relation to duration of experience. A number of respondents believed that the duration of experience should be greater than two years. One organisation suggested that this lack of professional experience may be detrimental when patients were less aware of their condition and treatment, as their condition could be misidentified. Concern was also expressed that the current wording implied that individuals from the health and social care sector with limited experience in disability could carry out consultations for Adult Disability Payment. It was recommended that the criteria be amended from 'cumulative' to 'continuous' or that there be a limit set on the period of time over which experience can be gained.

Indeed, a concern was raised by a number of responders about lack of transparency in the regulations about suitable training and expertise for individuals working in the care environment where formal qualifications may not be required:

"There is a considerable difference between a trained and qualified nurse or occupational therapist with 2 years' experience in their field and an unqualified, minimally trained social care assistant working for 2 years in a care home." (Disabled People's Organisation).

Experts through experience and third sector support

Conversely, it was also suggested that 'experts through experience' should also be considered for this role rather than solely engaging health or social care professionals:

"Disabled people have had a mixed range of experience with health and social care professionals, not all of it positive, and we don't think that employing former health and social care staff necessarily guarantees a more understanding approach. Disabled people don't want a paternalistic 'carer's perspective', they want the perspective of other disabled people." (Third Sector Organisation)

In addition, clarity was sought about the role of Disabled People's Organisations and Third Sector organisations in supporting applicants through the process:

"It is not clear within the text if [organisation] staff would be considered and included in decision making alongside statutory health and social care staff. We would hope that this could be included." (Disabled People's Organisation)

Use of existing data and information

The use of existing data and information which already exists in the public sector to inform decisions was welcomed by consultation respondents and those attending stakeholder events alike.

Respondents welcomed the change to gather information from a broad range of sources, as well as accepting input from informal sources. It was suggested that this would help to shift the burden from the individual and allow those who knew them best to provide information on the real impact that their condition has on their abilities. It was felt that this would make the process less stressful for the applicant.

Some organisations did, however, seek clarity on how any data-sharing process would work and the point at which the applicant would give permission for this. Another organisation cautioned that it would be important for Social Security Scotland to consider health inequalities in access to primary care which may affect the quality and availability of information about the person.

Need for further change

While regulation 38 was broadly welcomed, concerns were raised that reference to learning disability and mental health explicitly within the regulations had resulted in the introduction of discrimination. It was argued that other categories of conditions should be specifically identified for specialist input. Adding to this argument, concern was raised that input from specialists from a range of disability backgrounds was not apparent in the regulations, as currently written.

Organisations supporting individuals with mental health problems, autism, Muscular Sclerosis, epilepsy, deafness, Parkinson's, visual impairment, people with profound and multiple learning disabilities with the most complex care issues, military veterans and chronic fatigue syndrome highlighted that practitioners lacking an understanding of their lived experiences made the process particularly challenging:

"In their current form, the regulations set alongside the consultation document do not provide the clarity we believe is required on ensuring the right priority is given to specialist knowledge in making assessments with regard to visual impairment conditions." (Disabled People's Organisation)

Clarification was also sought about the allocation of a person's application to a practitioner in relation to their specific disability. In addition, a number of respondents had concerns about co-morbid presentations, questioning if a practitioner would only be required to have expertise in one facet of their difficulty.

In addition, it was suggested that if medical documentation provides sufficient detail then applicants should be spared the emotional and intrusive experience of a face-to-face or physical consultations. The current risk of COVID-19 transmission was raised to reinforce the importance of avoiding additional unnecessary face-to-face contact.

Finally, the inclusion of a right to access independent advocacy for those undergoing face-to-face consultations for disability assistance was welcomed, although it was stressed that all applicants must be made aware of this right:

"It is still really important that people are able take someone with them for support such as an advocacy worker or trusted family member or friend. Some people need this support for practical and emotional reasons. The process and timescale has to allow for this to happen and to make arrangements." (Disabled People's Organisation)

One organisation also urged that a 'right to reply' should be offered on draft Adult Disability Payment consultation write-ups prior to an award being applied.



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