Ill Health and Disability Benefits Stakeholder Reference Group: February 2017

Attendees and apologies

Present

• Bill Scott, Inclusion Scotland
• Gill Young, Castle Rock Edinvar
• Graham Watt, University of Glasgow
• Beth Hall, CoSLA
• Rob Gowans, Citizen’s Advice
• Yvette Burgess, Coalition of Care Providers Scotland
• Gerard McFeely, NHS Lothian
• Ed Pybus, CPAG
• Penny Stafford, SG Disabled Children and Young Peoples Advisory Group
• Dr Mini Mishra, Scottish Government
• Pauline Davidson, Scottish Government
• Pat McAuley, Scottish Government
• Ruth Candlish, Scottish Government
• Rachel McGruer, Scottish Government
• Dr Trish Brady-Campbell, Scottish Government
• Leila Akhoundova, Scottish Government

Apologies

• Anne Gunnar Logan, Coalition of Care Providers Scotland
• Nicola Dickie, COSLA
• Richard Gass, Glasgow City Council representing SLGP
• Kate Burton, NHS
• Michael McClements, CoSLA
• Donna Burnett, NHS Lothian
• Emelia Crighton, NHS
• David Formstone, Social Work Scotland
• Jim Carle, SG Disabled Children and Young Peoples Advisory Group

Items and actions

1. Minutes of meeting 17 November 2016

No comments had been received from Members and the minutes were agreed.

Under Actions 2016/21 and 2016/16, an updated list of all current / upcoming stakeholder groups was tabled (see Paper IHDSRG-7b), following discussions at the Oct / Nov meetings.

Action 2016/25, to update the group on the Disability and Carers Benefits Expert Advisory Group (DACBEAG), remained open as the DABCEAG has yet to be appointed / meet.

Action 2017/01 – Inform Reference Group when Chair and membership of DACBEAG is announced (Spring)

2. SG Update (Pauline Davidson)

SG provided information about the upcoming SG-led benefits take-up activity which is scheduled to run for a week in March. Members suggested a number of additional communications routes, e.g. local newspapers, Insight Radio, co-located advisors. Members also noted importance of flagging with wider stakeholder, e.g. sector / local authority advice services and wider front-line services.

SG noted that the second Paul Gray independent review of PIP is due to be published in Spring 2017.

SG updated progress on the Social Security Bill which is due to be introduced by Summer 2017.

SG updated the Group on two recent short-term co-production projects funded by SG and run by GDA and the Alliance respectively. The Alliance project

SG flagged that the DWP PIP Stakeholder Forum is due to be held in Glasgow on 1 March 2017, invites have been circulated by DWP.

Bill Scott from Inclusion Scotland offered to be a policy spokesperson from the sector for the benefits take-up activity.

Action 2017/02 – SG to ensure comms colleagues are linked in with work around co-location, getting messages out via link-workers / co-located advisors etc. (Feb)

Action 2017/03 – Ensure that key delivery stakeholders are aware and informed of the benefits take-up activity, including advice services within disability sector organisations (e.g. RNIB, SCoD etc.) and local government welfare rights teams (Feb).

Action 2017/04 – Inform Reference Group when Paul Grey review is published (Spring).

Action 2017/05 – Report back to the Reference Group on key conclusions / outcomes of the short-term co-production projects run by GDA and the Alliance (April)

3. Consultation (Trish Brady-Campbell)

SG has been working closely with Research Scotland, who were commissioned to undertake the consultation analysis. The consultation report is linked to a parliamentary statement and will be published at 2pm on 22 February.

Action 2017/06 – Circulate link to consultation report once published (Feb).

4. Options Appraisal (Leila Akhoundova)

Options Appraisal work is on-going, with continued engagement with stakeholders around the best way to deliver benefits.

Members noted it was important for all options being modelled to consider what the level of discretion at the local level would be, i.e. what autonomy would agency workers / decision-makers have about the remit of their role. Some raised concerns about how this may result in varied decision-making. It was noted that the aim was to have uniform decision-making with a practice of customising advice to the individual.

5. Experience Panels (Trish Brady-Campbell)

SG provided an update on the large-scale user research involving 2,000 people in receipt of benefits which will launch in early March. There will be two routes for recruitment: direct recruitment via a DWP sampling mail drop, open recruitment for wider participants.

Members noted it was important to encourage take-up in the most deprived areas. Also noted the importance of engaging with more excluded groups (for example, EU nationals). Members noted the importance of terminology when discussing ‘hard to reach’ groups, may be more appropriate to call these ‘excluded groups’ or ‘under served groups’. Members commended the testing of materials with focus groups and recommended continued testing.

Members noted it may be useful to involve not only those in receipt of benefits but those who have lost out in transition from DLA to PIP, those who are in the process of applying for benefits. They also noted that there were specific concerns held by those who have lost mobility allowances with transition to PIP; stakeholder organisations have a wealth of information about specific cases where loss of mobility (and often Motability) has been an issue.

Action 2017/07 – Circulate slide pack on Experience Panels (Feb)

6. Award Duration and Automatic Entitlement (Ruth Candlish)

SG colleagues introduced Paper IHDSRG-7a and provided an overview of recent initial work around policy development on award duration and eligibility for disability-benefits, including key points from a recent workshop with health professionals on these topics. Members were asked to consider how to approach further policy development in this area and if there was scope for smaller working groups to look at this. SG also noted this linked in to wider issues around data availability and access and suggested members commission further work on this. It was noted that the Expert Advisory Group (DACBEAG) might also have an interest in this work.

Members noted that it was important to consider these topics in the context of the design of disability benefits system as a whole. The importance of embedding a principle approach throughout the system was noted. Shaping the purpose of the benefits to guide the system would also assist a fairer and improved approach.

Members also noted the importance of transparency and trust being built into the system; noting that there were alternative approaches (e.g. tax system only requires additional information in rare cases) and a more trusting approach had been used in the past.

Around award duration, members noted that the purpose of reviews could be linked to wider outcomes and it was vital to uphold a high-level principle that the assessment / review process does no harm to claimants.

Members reported a range of considerations around automatic entitlement, including linking this to eligibility to disability benefits as a whole, young people not having specific diagnoses, linking entitlement to receipt of other services, e.g. certain level of care package, some people have fixed disabilities not having recent assessments / evidence. They also recommended further examination as to how automatic entitlement was approached under the now defunct Incapacity Benefit, as well as DLA. It was also noted that members were tentative about the progress of medical advances and how that related to automatic entitlement / longer-term and indefinite awards, as advances are often not that fast.

On the data issue, members made a number of points including: issues with the accuracy of diagnosis, data sharing / evidence provision being easier for specialist clinics, GPs often not having disability expertise, health records containing irrelevant and often highly personal information, impact of data sharing on people’s sense of privacy and wellbeing, the importance of not overloading the system.

Members also asked about the role of advice and advocacy within the social security system and how this would interact with disability benefits.

Action 2017/08 – SG to provide update on advice and advocacy in social security system at next IHDBSRG meeting (April).

Action 2017/09 – SG to commission data mapping work around disability-benefits, initial activity to be discussed at next IHDBSRG meeting (April)

Action 2017/10 – SG to draft potential remit for working group on award duration (April).

7. AOB and Agenda for Next Meeting (Pauline Davidson)

No AOB items raised. See Actions 2017/08 and 2017/09 for items for next meeting.

Next Meeting: Tuesday 18 April (10:30 – 13:00) Atlantic Quay, Glasgow