Co-Production Working Group Meeting 5

Tuesday 19 December 2023 – 10.30am to 12.30pm

Online via Microsoft Teams

In Attendance:

Peter Scott, ILF Scotland (Co-Chair)
Iain MacAllister, Scottish Government (Co-Chair)
Laura Kerr, Social Work Scotland
Jim Elder-Woodward, ILF Scotland Advisory Group
Andy Higgins, ILF Scotland Advisory Group
Tressa Burke, Glasgow Disability Alliance
Andy Miller, Scottish Commission for Learning Disability
Cameron Smith, Scottish Commission for Learning Disability
Fran Holligan, COSLA
Catherine McGoldrick, COSLA
Gaby Nolan, Lothian Centre for Inclusive Living
Jenny Miller, PAMIS
Lyn Pornaro, Disability Equality Scotland
Marianne Scobie, Glasgow Disability Alliance
Pauline Nolan, Inclusion Scotland
Sam Smith, CCPS
Fiona Collie, Carers Scotland
Margaret Petherbridge, Falkirk Council / ILF Liaison
Jan Savage, Scottish Human Rights Commission
Oonagh Brow, Scottish Human Rights Commission

Present:

Robert Peterson, Scottish Government
Steven Hanlon, Scottish Government
Lauren Glen, Scottish Government
Jack Blaik, Scottish Government
Amelia Andrzejowska, Scottish Government
Robert White, ILF Scotland
Erika Mather, ILF Scotland
Linda Scott, ILF Scotland
Harvey Tilley, ILF Scotland
Karen Lockhart, Glasgow HSCP
Steven Love, Glasgow HSCP
Alison Noonan, Glasgow HSCP

Apologies Received:

Donald Macleod, Self-Directed Support Scotland
Calum Macaulay, Glasgow Centre for Inclusive Living

Item 1: Welcome

Thanks extended to all for attending the fifth meeting of the ILF Co-Production Working Group especially given the busy time ahead of Christmas.

Item 2: Declarations of Interest

None declared.

Item 3: Minutes of Previous Meeting

Minute approved.

Item 4: Matters Arising and Actions

Agreed to swap agenda order for today and paper 12 to be discussed first.

Item 5: Co-Production Check In

Thank Disability Equality Scotland for getting the Easy Read versions of Papers.

No further comments around co-production process so far.

Item 6: The Use of Funds

A brief introduction of the topic and paper 12 was provided. Current ILF Scotland Policy (Policy 41) outlines list of outcomes that ILF can be used to achieve with an emphasis on independent living.

In addition, a policy on Flexible Funding was introduced by ILF Scotland to enable the purchase of non-traditional goods and services that are classed as non-routine but also support the recipient to achieve independent living outcomes. However, those require specific authorisation from ILF Scotland (ILF).

It was emphasised that ILF funds were never used to pay for day-to-day living costs such as utility bills, food, heating, or rent.

During the engagement event some people expressed views that greater flexibility could be allowed re use of ILF.

The group is being asked to consider how the use of money is defined in the new fund.

The group discussion included:

• It was voiced that it should be allowed to use the fund for PA expenses e.g. fuel and food on outings. Direct Payments have different practices and not everyone covers PA expenses.
• It was discussed how SDS budget is being spent by the recipients and how it may impact the way they wish to use ILF money.
• It was asked to be mindful of how change is recorded for people transitioning between different stages through their life and how their needs change – the fund should offer the flexibility to accommodate change of needs. Others pointed that the assessment itself needs to be realistic and pragmatic and verify whether those needs are not falling into any statutory responsibility.
• It was mentioned that we should encourage creativity, but an umbrella list of how funds can be used could help to ensure that spend is under control and supports independent living needs and not day to day spending; however, some additional aspirational types of spending to optimise disabled people’s living could also be allowed.
• There was a discussion on the current financial landscape and the risk that it creates of blurring of the funding responsibilities of LAs and ILF. It was emphasised that ILF should not be used to cover costs that are the statutory responsibility of another public body - current policy is clear that responsibilities falling under LAs budget won’t be replaced by ILF.
• It was emphasised that the new fund should be supportive of choice and control, but the reality is that this fund will be used differently by different people in different parts of the country as inequity exists, for instance in access to PAs.
• The interface with benefits entitlement was raised and it was confirmed that ILF payment and SDS option 1 are disregarded for benefit purpose by DWP and HMRC – not treated as personal income. Some reported that disabled people are being denied support and services and instead they're being told to use their PIP/ADP benefit to cover. Important that ILF additionality remains otherwise it leads to erosion of disabled people’s rights.
• It was voiced that helping people overcome barriers in relation to independent living should be the priority rather than paying for personal care. ILF should be flexible as possible, placing the focus on enhancing independent living rather than on simply providing additional hours of care. Purchase of equipment and other non-care expenses were discussed.
• It was stressed that although flexibility is important currently vast majority of funds is being spend for PAs or to pay care providers - most common use of funds recorded so far.
• Some concerns were raised about disabled people experiencing difficulties while applying for Access to Work, being refused grants and expected to use SDS or ILF to cover for personal care needs. It is one of the examples’ how disabled person is caught in the vicious cycle in terms of problems with access to resources they need to fulfil they needs.
• The existing requirement of recipients seeking permission to use funds differently was discussed. Some acknowledged reasons why recipients may be reluctant to ask for permission, but there is a need to balance the risk, to make sure that funding is used appropriately, avoid overspending and prevent inappropriate use of funds. In particular the requirement was viewed as a necessary protection of public money and assurance that there is a system which satisfies DWP in relation to disregard for benefits purposes.
• We should highlight to people in an accessible way to what the funding should not be used for and keep the independent living points currently used as well as expand and broaden the examples list whereas keep to minimum to what absolutely money should not be spent.
• It was suggested that it would be helpful to find a way to illustrate where ILF sits in between DWP and LAs funding. Any visual aid would support the understanding.

Action: ILF to work with DES or others to develop some visual concepts and any suggestions from the group members are welcomed.

• It was discussed whether ILF should be used to support decision making. Currently unpaid advocacy services are largely limited only to support in relation to statutory issues - could ILF be used to access advocacy; the difficulties in access to advocacy are known to ILF assessors in some HSCPs; so far requests not arisen re use of fund for advocacy, but part of the exercise is to listen to the views of people how ILF should be used and advocacy may be one of those new things.

Action: ILF to follow up with Scottish Independent Advocacy Alliance to gain more understanding re advocacy issues in relation to independent living.

• It was agreed that current ILF model of the use of fund should be maintained but keeping the list of things for which the spend is not allowed to the minimum and at the same time offer more flexibility built in to allow recipients more choice and control.
• The issues to be investigated and considered further are cover of PAs expenses and support of spend on advocacy services.

Item 7: The Relationship with LAs

Short introduction was provided to the topic and explained that there are differences in terms of how relationship with LAs is defined depending on if recipients are in Group 1 or Group 2.

Group discussion included:

• Improved communication was indicated as the main method for adjusting relationship between ILF and LAs in the re-opened fund. Glasgow services were presented as an as example where things are improved. It was shared how Glasgow area established a liaison point with local assessors; a dedicated point of contact ensures enquiries are being dealt with in a timely manner.
• Some general comments included broader social care challenges such as people not having named social worker, workforce crisis, the need for reform; the need for appropriate structure, staffing, skills and competencies to ensure human rights are protected.
• It was acknowledged that re-opening can create the opportunity to review and note changes needed. However, ILF does not operate in vacuum and is impacted by social care challenges but as an organisation ILF can contribute and is willing to engage in conversation but leading on the broader social care reform is not within ILF scope.
• It was suggested that ILF can provide examples of good practice and share with others how to act in the “do least harm” manner in relation to accommodating human rights and being explicit and point to where it is not done right in the system as we all play a role in challenging poor practice.
• It was requested that only known practitioners to the disabled person to be involved in their reviews.
• Wondering about the use of digital passport that tells a story once and might help the new practitioner understand the aspirations of the person. A digital passport would allow easy transfer of information with no need to repeat the stories over and over again. However 60% of disabled people face digital exclusion so there is a caution needed re this solution.
• It was pointed that ILF Scotland operates across the country with ILF assessors across 32 local authorities; assessors report good practice as well as challenging poorer practice respectfully, all with the aim to maximise benefit to the disabled person.
• The question was posed how to ensure that eligibility criteria are understandable if self-application/ self-referral were to be allowed; greater emphasis on accessibility is required. ILF would welcome initial statement from the disabled person themselves as it sets the tone of conversation as person-led from the start.
• It was discussed whether it would be possible for a supporting person to be able to apply directly. Various complexities are present including the challenge how to give the supported person full empowerment and assistance during the process.
• The initial administrative burden was considered. It was noted that the less filtering social work does then it means more work for ILF. Comparison was made to the Transition Fund and challenges that direct applications present. At what stage is best to start the involvement of LAs, at the very beginning or later is an important question.
• The idea of introducing self-assessment was discussed. Is there a case for self-review for people whose needs and circumstances haven't changed? Or would that be seen as insufficiently robust?

Action: ILF to consider whether self-assessment is appropriate for the reviews.

• IT issues were indicated as a challenge to be able to create 2-part applications especially ahead of planned opening in April but perhaps offering ability to download the form from ILF website to express interest should be allowed and this expression of interest would be followed by LAs. At the same time, we want to avoid creating disappointment and waste of time. Manging expectations properly is important given that the group intends re-opening with eligibility criteria based on the threshold. Those details are held by LAs, hence SWs involvement at early stage is necessary to ensure smooth process.
• Feedback from the Engagement Event was shared, and extensive processing time would worry applicants, especially that many experienced delays in communication with SW in the past and those delays may mean that people lose out on money. Others advocated that close relationship with LAs is required from the start.
• An updated statement from COSLA and ILF is expected. There is a need to accommodate a time for testing of portal, capacity, and pathway of the re-opened fund.
• Others saw the necessity to consider the role of the third sector in supporting the application and assessment as charities frequently support families. Funding required for the third sector to continue that work as their role is vital and with appropriate funding charities could be part of the solution together with the education of the next generation of social workers.
• It was asked what the plans in relation to communication with SWs are ahead of re-opening, joint statement and practical steps; it was acknowledged that communication with social workers is required, and existing network of SWs is meeting on 20th December and feedback to be shared with this group.

Action: ILF to provide feedback from existing network of SWs in relation to plans of cooperation on re-opening.

Item 8: Murrayfield Engagement Event Feedback

Brief feedback from the engagement event was provided and ILF ensured that they will deliver an update re arrangements for the future events planned for January 2024. Following all events, a feedback report to be produced and shared with the group members.

The engagement at the Murrayfield event was positive but important to note that some anger and upset was present; people were very happy that ILF is re-opening but the wider challenges including cost of living and social care crisis mean life is difficult for many disabled people.

Item 9: AOB

None raised.

Item 10: Next Meeting Arrangements

The next meeting to take place on Thursday, 18 January 2024 and it will be online via Teams. It will focus on summarising and reviewing all the work completed so far to set the direction for future meetings.

ILF will work with SG to draft a summary paper of what has been agreed so far and it will be shared in advance of next meeting.