The Independent Living Fund in Scotland

ILF Scotland is a public body that administers social care funding for disabled people in Scotland and Northern Ireland.

It has two funds – the Independent Living Fund and the Transition Fund.

The Independent Living Fund

Through its Independent Living Fund, ILF Scotland provides an ongoing weekly financial award, paid monthly, to disabled people in Scotland and Northern Ireland. This funding enables people to purchase additional social care support so they can live independently in their communities.

The Independent Living Fund is a discretionary fund that can provide social care support that is additional and complementary to statutory funding that people get from local authorities via a social care support package or Self-Directed Support (SDS) package.

The Independent Living Fund Re-Opens in Scotland

The Independent Living Fund was closed to new applicants in 2010. ILF Scotland took over the administration of awards to existing recipients of the fund in July 2015. In April 2024 this fund re-opened to new applicants in Scotland.

Who is the Re-Opened Independent Living Fund for?

The re-opened fund is for disabled people who:

• live in Scotland
• are aged 16 years or over at the time of application
• receive a social care support package or Self-Directed Support (SDS) of at least £800 per week

We call these our access principles.

How much can ILF Scotland award?

The maximum award that ILF Scotland can pay is £330 per week.

What can the awards be used for?

The Independent Living Fund is designed to enable people who meet the access principles to purchase additional social care support to help them achieve the independent living outcomes that are important to them. During a visit, the potential recipient will agree with one of our assessors how they wish to use the funding.

The Independent Living Fund can help support disabled people to:

• overcome barriers to independent living
• have choice, control and live an independent life
• develop or maintain their physical, mental or spiritual health and well-being
• stay safe and manage any risks inside and outside the home

In most cases, people use their award to purchase additional social care support by employing a Personal Assistant or purchasing support from a care provider to help them to, for example:

• undertake work, learning, or training
• participate in civic society
• be involved in their local community
• pursue personal hobbies and interests
• see family and friends, and attend social activities

Independent Living Fund awards cannot be used as personal income and should be used primarily to purchase social care support. Occasionally, we might be able to fund a one-off cost if we agree that it meets a recipient’s social care outcome.

We will not normally fund support or services that are the responsibility of another provider or source, such as:

• Independent Living Aids
• adaptations to a home or home boundaries
• communication aids
• everyday expenditure such as food or clothing
• medical or nursing care
• care and support currently or previously funded by a local authority or Health and Social Care Partnership

Applying to the Re-Opened Independent Living Fund

Applications to the Independent Living Fund must be submitted by local authority social work departments on behalf of disabled people in Scotland.

All potential applications should already have social care support or an SDS package in place and be known to their social work department.

Each local authority will have its own approach to identifying and prioritising potential applicants.

Find the most up to date contact details for your local authority on our website:

https://ilf.scot/go/la-contacts

Or call us on 0300 200 2022

ILF Scotland will assess all applications received from social work departments to confirm that they meet the access principles of the fund. If they do, we will then visit potential recipients to complete the application process and to determine whether or not ILF Scotland can offer funding.

Transition Fund

ILF Scotland provides one-off, discretionary, grants of up to £4,000 for one year, through its Transition Fund to young disabled people aged 16 to 25, living in Scotland. These grants help young disabled people to:

• become more engaged and active in their community
• enhance their independence and confidence
• help them to spend more time with other people

#TrySomethingNew

Visit https://ilf.scot/transition-fund to find out more about the fund and how to apply.

Thursday 14 March 2024 – 1.30pm to 3.30pm

In Attendance:

Peter Scott, ILF Scotland (Co-Chair)
Cameron Smith, SCLD for Andy Miller
Donna Murray, Social Work Scotland
Gaby Nolan, Lothian Centre for Inclusive Living
Andy Higgins, ILF Scotland Advisory Group
Jill Lapsa, COSLA for John Urquhart
Jenny Miller, PAMIS
Laura Kerr, Social Work Scotland
Lyn Pornaro, Disability Equality Scotland
Marianne Scobie, Glasgow Disability Alliance for Tressa Burke
Donald Macleod, SDS Scotland
Pauline Nolan, Inclusion Scotland

Present:

Steven Hanlon, Scottish Government
Lauren Glen, Scottish Government
Jack Blaik, Scottish Government
Harvey Tilley, ILF Scotland
Robert White, ILF Scotland
Linda Scott, ILF Scotland
Erika Mather, ILF Scotland
Stephen Wilson, DES

Apologies Received:

Iain MacAllister, Scottish Government (Co-Chair)
Margaret Petherbridge, Falkirk Council / ILF Liaison
Catherine McGoldrick, Health and Social Care Scotland
Tressa Burke, Glasgow Disability Alliance
John Urquhart, COSLA
Oonagh Brown, Scottish Human Rights Commission
Jim Elder-Woodward, ILF Scotland Advisory Group
Calum Macaulay, Glasgow Centre for Inclusive Living
Andy Miller, SCLD

To Join Later:

Robert Peterson, Scottish Government
Sam Smith, CCPS
Fiona Collie, Carers Scotland

Item 1: Welcome

Everyone was welcomed to the ninth meeting of the Co-Production Working Group.

Thanks and appreciation extended for everyone’s contribution to the process.

Apologies received from Iain MacAllister, Margaret Petherbridge, Catherine McGoldrick, Calum Macaulay, Jim Elder-Woodward, Oonagh Brown and Andy Miller. Marianne to join for Tressa.

Robert Peterson, Sam Smith, Fiona Collie and Jenny Miller will join later during the meeting.

Welcome extended to Jill Laspa who attends on behalf of John Urqhart from COSLA. – short introduction was made.

Item 2: Declarations of Interest

None raised.

Item 3: Minutes of Previous Meeting

Group content to approve.

Item 4: Matters Arising and Actions

Action 1: Plan and dates for the continued Co-Production Working Group process to be shared with group members as soon as possible.

This action was yet to be completed. Suggestion was made to reconvene in early June 2024 – to revisit at the end of the meeting.

Action 2: Allocation method to be finalised and confirmed.

Paper 18 was circulated in advance with the proposed method of allocations to LA areas.

Action 3: Wording about Maximum Award in Paper 16 to be amended to reflect affordability issues in more transparent and open way.

Action 4: Monitoring and Real Cost of Care topics to be added to the Year One Post-Opening Priorities list.

Action 5: Wording in the recommendation to be amended to reflect focus on partnership work between stakeholders (ILF Scotland, Assessors and LAs / SWs).

All above amendments in the recommendations were made shortly after last meeting and shared with the group ahead of submitting the paper to the Minister. Agreed that those amendments were accepted.

Item 5: Co-Production Check In

The group members expressed very positive feedback about co-production process.

Item 6: Recommendations to the Minister – Update on Progress

An update on Recommendations to the Minister was provided. Since the last meeting of the group, the advice was submitted to the Minister with the group’s recommendations; the Minister is happy to go forward but it was stressed that we are awaiting feedback from COSLA board meeting and that the decision is subject to that feedback.

Reassurance was given that the Minster was also happy with the request of the group to continue the work to evolve the fund over the first year and that the Year One work priorities list was accepted. A formal response to the recommendations will be made public in the near future and the exact date of the re-opening will be confirmed.

The Minister is pleased with this group’s approach, which focused on pragmatism and readiness for compromise, and she wishes to pass thanks for the time and energy dedicated towards the process.

Thanks was extended to the ILF Scotland team and gratitude for their excellent work and being supportive, providing information in a clear and honest way, and their efforts to prepare easy reads was appreciated. Thanks also extended to DES for easy reads in a quick turnaround time and to SG team for their openness in the process.

Plans were shared to review this co-production process with a view to learning from it and to be considered as a model for future projects and developments. It was indicated that the group may be used as a case study as a good example of co-production. It was acknowledged that it was an effective process to get the outcomes required despite the group being formed rapidly and recommendations being put together at speed. Several group members noted that it had been an enjoyable experience and a pleasure to work together, although it had been time consuming and hard work, with the amount of information required to be processed. Group members may receive request for quotes and feedback in due course from ILF Scotland.

Item 7: Final Insights from Public Engagement

A brief outline of Paper 19 content was provided indicating that two individual reports from last events were sent out. The full report will follow and will include statistics on the whole engagement process.

It was indicated that the Glasgow event had the highest numbers of attendees. The outcome from discussions at this event varied little from that of previous events so no changes were required to the documentation.

There will be a summary document issued to all who attended.

Item 8: Communications in Run-Up to Re-Opening

Plans and a schedule in relation to communication on the re-opening of the ILF were outlined. Currently ILF Scotland is working with SG team to co-operate comms. Policy work is being carried in the background, however, this mostly requires updates to the existing suite of policies and no new policy is required.

The Communications Plans need to be consulted on with SW ILF Leads at the planned meeting and the comms will follow shortly after.

A series of communications is planned to include highlighting the recommendations and confirmed ministerial approval, details about the application route and launch of the re-opened fund. It was emphasised that caution is needed to manage expectations as some disappointment is expected, especially around lack of route for direct application. Comms will highlight that work to be continued in the next year.

ILF Scotland shared that they have already had some enquiries and are working on collecting the insight into what can be expected and how to phrase the responses to be mindful of sensitivities.

Furthermore, guidance is to be shared with LAs. There is a need to monitor and analyse number of applications (successful and unsuccessful) as well as level of unmet need etc. These data will be recorded, and a draft evaluation framework will be shared for the group’s feedback.

It was requested to also include info on how to support communication with people who believe that they are entitled and may be interested in applying but current system supports only application via LAs. Separate communication will follow with focus on the brief for SWs – including key lines, summary and an accessible version for service users.

It would be welcome to make sure that messaging is positive but being open and transparent re gaps and unresolved issues.

Various forms of communication to be expected to professionals and general public.

Item 9: AOB

All group members were invited to the upcoming Parliamentary Event on 28 March, which is a follow up to Stormont event in 2019. The official invites to follow shortly. It was emphasised that this is not the launch event of the re-opened fund but of course re-opening will be acknowledged. The Northern Ireland Stakeholder Group and the Scotland Advisory Group are the organisers of this event, which ILF Scotland staff are co-ordinating on their behalf. The Groups consist of people who are current recipients, award mangers or other representatives of the disabled person. The event offers an opportunity to showcase the power of independent living.

It was proposed that the group reconvene for the next meeting in early June. ILF Scotland expect some insight will be already available regarding numbers and application process, however, the group may be contacted earlier if urgent issues arise.

The format of future meetings was confirmed, and papers are expected to be shared in advance; also agreed that Easy Read versions to continue be prepared and circulated. Future meetings to be held every two months.

1. Local Authorities have statutory assessment and care management responsibilities for those members of their communities who are assessed as needing social care support; ILF Scotland's role is to provide funding for additional and complementary independent living-focused support to disabled people over and above the statutory duties of local authorities.

2. COSLA and ILF Scotland recognise the added value that partnership and joined-up working delivers for the benefit of the disabled people who receive both statutory and additional ILF support - at the time of application to ILF and on an on-going basis.

3. It is recognised that at this time, when public sector budgets are under severe strain, it is more important than ever that local authorities and ILF Scotland maximise the value they can add in order to meet our shared ambition to support disabled people to live independent lives.

4. We are committed to working in partnership and believe that close collaboration is essential during the application and review of support arrangements for those we jointly sustain.

5. Whilst new applications will be led by local authority practitioners it is important to acknowledge that decisions on, and responsibility for, awarding ILF funds rest solely with ILF Scotland. 

6. ILF Scotland is governed by a set of operational policies which have historically offered a degree of flexibility and discretion to deliver the best possible outcomes for the recipients of the fund. Local authorities apply agreed eligibility criteria and also have flexibility in the support they can provide to meet individuals' outcomes through Self-directed Support. It is important that these respective flexibilities continue to be used to full effect in order to maximise the benefit of the cumulative resources to all those receiving support.

7. Whilst recognising the need for close dialogue and discussion in those cases where there is a dual funding arrangement COSLA members and ILF Scotland will continue to focus on fulfilling our discrete but complimentary responsibilities, ensuring that we maximise the positive impact of public funds on independent living outcomes for disabled people in Scotland.

8. Key Principles to support this partnership approach:

• The needs and wishes of the person being supported will be kept at the centre of the partnership.

• ILF Scotland will offer support and guidance to local authorities on the process and priorities for new applications.

• Local authorities recognise that ILF is not intended to fund assessed local eligible needs and will confirm, at the point of application, that this is the case.

• ILF Scotland and local authorities will share data to support effective joint working in the interests of applicants and recipients, in line with our data protection obligations.

• Early notification will be given of any reassessment of need and adjustment to the total level of funding provided by either the local authority or ILF Scotland.

• ILF Scotland and local authorities will apply maximum flexibility, as appropriate, with regard to funding decisions.

• There is joint acknowledgement of the different governance requirements and operational policies associated with local authority and ILF support provision.

• There is acknowledgment that local authorities have a statutory responsibility to use finite resources to support all individuals with eligible support needs through fair and flexible means.

• There will be timeous communication ahead of any final decision around allocation or reallocation of resources being taken by either the local authority or ILF Scotland.

COSLA and ILF Scotland
April 2024

Executive Summary

The First Minister announced that ILF Scotland would re-open in April 2024 to up to 1,000 new applicants in Scotland with the most complex needs and that disabled people and other key stakeholders should help determine the policies required. A Co-production Working Group was established to make recommendations to the Minister for the re-opened fund and ILF Scotland arranged a series of engagement events between December 2023 and February 2024 to gather direct feedback on the planned re-opening.

Seven events were held, four in person and three online, and we captured the views of 222 people. During the events, we gathered over 1,800 direct comments and we sought feedback about the events from every participant. In summary, respondents greatly valued the opportunity to participate in discussions and express their views about the re-opening of the fund.

Attendees were asked to discuss and provide feedback on a range of areas identified by the Co-production Working Group, a summary of which is provided below.

Qualifying for ILF (Threshold Sum)

Attendees recognised that a threshold was necessary to determine who could access the re-opened fund but that flexibility is important and that access to ILF Scotland funding should be considered further rather than being based exclusively on a fixed financial level of funding a person receives from a local authority.

ILF Scotland Maximum Award

Attendees agreed that a maximum award was required and that it should be set at a level that would be meaningful in terms of enabling people to achieve independent living outcomes and it is important the the fund is both equitable and sustainable.

Age

Attendees were very supportive of having no upper age limit. They felt that the lower age limit should remain at 16 years.

Award Management

The majority of attendees thought that the current ILF Scotland system regarding award managers works well and should continue.

Charging for ILF (Available Income Contribution)

The majority opinion was that the fund should re-open without a recipient contribution or charge.

Capital Threshold

Attendees felt that there should be no capital threshold applied to the re-opened fund.

Relationship with Local Authorities

Attendees were supportive of ILF Scotland and local authorities maintaining strong working relationships for the benefit of the recipient, who should be at the heart of any decisions regarding their support needs and their award.

Additionality

Attendees felt very strongly that ILF Scotland funding must be additional to local authority funding. Local authorities are responsible for personal and critical care while ILF should focus on inclusion, participation and on improving people’s independent living outcomes.

Use of ILF Scotland Funding

Almost all attendees thought that the existing ILF Scotland policy around use of funding should remain in place.

Prioritising who receives funding

Participants suggested that funding should be priorities as follows:

• People at risk of residential care.
• People with mental health issues, ‘invisible disabilities’ in addition to physical disabilities.
• Those in rural communities who find themselves isolated.
• Older people.

Background

In September 2023, the Scottish Government announced that the Independent Living Fund Scotland would re-open in April 2024. Part of this commitment was to ensure that the re-opened fund would be co-produced with disabled people and other key stakeholders. The Scottish Government and ILF Scotland established a Co-Production Working Group. The group included disabled people with lived experience, members from Disabled People’s Organisations, COSLA and other key stakeholders. The purpose of the group was to make recommendations to the Minister for Social Care, Mental Wellbeing and Sport on the proposed policy framework for the re-opening of the Fund. The group made recommendations to the Minister, all of which she agreed in March 2024. You can view the response from the Minister on the Scottish Government Website.

The group highlighted ten policy areas that it felt were most relevant to accessing the re-opened Fund. ILF Scotland organised a series of public engagement events across Scotland. Attendees of these events were asked to comment on each of the ten policy areas and their views were fed back to the Working Group.

The purpose of this report is to summarise the information and insights collected across these series of events.

Events

• Edinburgh: 12 December 2023
• Online: 11 January 2024
• Aberdeen: 17 January 2024
• Online: 25 January 2024
• Stirling: 30 January 2024
• Online: 12 February 2024
• Glasgow: 19 February 2024

ILF Scotland shared feedback from the events with the Working Group via insight reports. We also shared discussion summaries to attendees of each event, which are published on the Re-Opening page of the ILF Scotland website.

Feedback from the events helped to inform the recommendations that the Working Group made to the Minister regarding the access principles and policy framework for re-opening the fund.

Section 1: Engaging Stakeholders

1.1 Inclusion and Equality

ILF Scotland ensured that each event was as accessible as possible, achieved through consulting a sub-group from the Working Group who provided valuable advice on accessibility. This covered location issues, transportation, presentational styles, lunch and personal breaks, aids to facilitate effective communication, Easy Read information resources and translation and interpreting services. Large print and braille resources were available upon request (although none were requested). Personal assistants were also available at the larger events and ILF Scotland staff were always available to assist individuals as required. The accessibility rating of each event, based on participants feedback is available at Appendix A.

Event locations were chosen in different geographical areas to be as inclusive as possible, within the time period allowed.

In addition to the in-person events delivered in Edinburgh, Aberdeen, Stirling and Glasgow, three online events took place, which helped to ensure that interested stakeholders from across Scotland had the opportunity to participate.

The online events were very helpfully co-hosted with Glasgow Disability Alliance because of the experience the organisation’s staff members had of running online events.

One of the online sessions was held in the evening to accommodate working parents, with 57% of attendees represented by parents and carers.

Another was organised to specifically target stakeholders in the geographical location of Highlands and Islands given the rural / island and sometimes isolated nature of these communities, ensuring that people living in these areas were included and had an opportunity to have their say.

1.2 Engagement Approach

The Working Group was tasked with developing recommendations on the policy framework for the re-opened ILF.

In advance of participating in an event, ILF Scotland provided attendees with information on the issues that would be discussed and the specific questions that would be asked. See the Issues and Questions at Appendix B. This meant the attendees were adequately informed in advance of participating, to help them prepare for discussions and share their views about how the re-opened fund might best support the independent living outcomes of more disabled people in Scotland.

At the events, attendees participated in small group discussions, with the support of ILF Scotland facilitators and notetakers, to address each of the questions. Views were captured and recorded and sent in list form to attendees. You can read Discussion Summaries for each of the events on our website. This approach was followed at each of the seven events.

1.3 Event Communications

ILF Scotland shared information about the events and the registration process on its website, via social media, direct online mailouts and through local press releases. Photographs and videos were produced at the Edinburgh and Glasgow events that we published on our website.

All ILF Scotland existing recipients / award managers were invited to each event according to their geographical location. 1,472 direct postal invitations were issued.

1.4 Invited Groups

ILF Scotland invited 68 Disabled Person’s Organisations (DPOs) and support organisations to the engagement events and asked these organisations to publicise the events through their own networks and communication channels.

We also invited social workers and managers from all 32 Local Authorities to events in their area, as well as the online events.

1.5 Evidence Set

The events were discussion-based and so the insights are largely qualitative. The aim was to capture views and opinions and collate the most significant views shared across all events.

Many common statements and views were shared at each of the events in relation to how people felt that the new ILF Scotland funding should be used to best achieve independent living outcomes.

People participating in the Aberdeen event, and the online session on 25 January, were mainly from communities in the Highlands and Islands and as such there was much discussion about the disadvantages people face in rural areas due to the amount of travel required to access services and the cost associated with this.

The collective voices of 222 disabled people and organisations were heard from all across Scotland. In total, over 1,800 direct comments were captured and are available in summary format on our website.

1.6 Audience Breakdown

Event: Edinburgh
Number of attendees: 64
Disabled Persons: 13
DPOs and Support Organisations: 19
Parents and Carers: 16
Local Authority / Social Workers: 16

Event: Online
Number of attendees: 19
Disabled Persons: 4
DPOs and Support Organisations: 6
Parents and Carers: 6
Local Authority / Social Workers: 3

Event: Aberdeen
Number of attendees: 10
Disabled Persons: 4
DPOs and Support Organisations: 2
Parents and Carers: 4
Local Authority / Social Workers: 0

Event: Online
Number of attendees: 11
Disabled Persons: 0
DPOs and Support Organisations: 2
Parents and Carers: 3
Local Authority / Social Workers: 6

Event: Stirling
Number of attendees: 15
Disabled Persons: 2
DPOs and Support Organisations: 5
Parents and Carers: 4
Local Authority / Social Workers: 4

Event: Online
Number of attendees: 21
Disabled Persons: 4
DPOs and Support Organisations: 4
Parents and Carers: 12
Local Authority / Social Workers: 1

Event: Glasgow
Number of attendees: 82
Disabled Persons: 17
DPOs and Support Organisations: 5
Parents and Carers: 23
Local Authority / Social Workers: 37

Totals
Number of attendees: 222
Disabled Persons: 44
DPOs and Support Organisations: 43
Parents and Carers: 68
Local Authority / Social Workers: 67

The events in Glasgow and Edinburgh attracted the largest audiences. 29% of the Edinburgh audience was from Disabled People’s Organisations (DPOs). 47% of the Glasgow audience were representatives from local authority social work offices.

Section 2: Insights Summary

The following provides a list of the questions and a collective summary of discussions from across the entire series of events.

2.1 Threshold Sum

Do you think people should receive a minimum amount of funding from their local authority before they could be considered for additional ILF Scotland funding and if yes, how much should it be?

Response

The majority view was that there should continue to be a threshold sum, although no clear consensus was reached about the amount of the threshold sum. Consistency of the threshold sum was highlighted as important although a number thought some flexibility was needed based on local costing structures, the level of need / support required, rather than a fixed sum. It should also take account of unpaid care.

2.2 Maximum Award

Should the re-opened fund have a maximum weekly award and if yes, how much should it be?

Response

There was a majority opinion that there should be a maximum award as part of the re-opened fund. The level of award must be meaningful and capable of making a real difference to people with some flexibility to take account of differing levels of need / hours of support required and varying cost levels across different parts of the country.

2.3 Age

Should there be an age limit applied for accessing ILF and if yes, what should it be and why?

Response

The majority view was that there should be no upper age limit. Some attendees thought that under 16-year-olds should be able to apply, however the majority felt that 16 should be the age criteria for re-opening, although a number thought that 18 or 25 years old would be an appropriate lower age limit.

2.4 Award Management

Should awards be managed in a re-opened fund in the same way as they are currently?

Response

All agreed that an Award Manager was required in line with ILF Scotland’s existing policy, with the clear preference that wherever possible, this should be the person themselves who should be supported to manage this role both financially and as an employer, supported by payroll and financial management agencies as required and funded by ILF Scotland along with other third parties providing formal or peer advocacy services. Delegating the role of Award Manager to Local Authorities should be avoided because many felt that social work services do not have the capacity required.

2.5 Available Income Contribution

Should a re-opened ILF have a charge of £43, another amount, or no charge?

Response

The majority of attendees felt the re-opened fund should not include available income contributions, particularly given the charges people already pay for other services and the cost-of-living crisis, which has a greater effect on disabled people, and especially since the Scottish Government plans to abolish social care charging in the near future. People also mentioned that they were already being charged by Local Authorities and there were concerns expressed about these charges being increased in the very near future.

2.6 Capital Threshold

Should the re-opened ILF have a capital threshold and if yes, how much should it be?

Response

Most attendees felt there should be no capital limit and that it would be unfair to deter people from qualifying if they were saving towards something significant like buying a home or for disability related expenditure, because the level of care they need doesn’t change. Others mentioned that capital thresholds are already in place for benefits and services so people’s entitlement would already be reduced.

2.7 Relationship with Local Authorities

Should there continue to be joint ILF and Social work reviews every few years for a re-opened ILF?

Response

Most people recognised that maintaining a relationship between the local authority and ILF Scotland is beneficial to achieving the best outcome for the recipient and that ILF and Local Authorities should be working together to make things join up well for the recipient. Some thought that ideally, a Social worker should be present at ILF reviews while others felt that it might not always be necessary and that ILF reviews could be conducted without Social work or that there needed to be a flexible approach to this. People were concerned about delays in applications because of capacity issues Local Authorities are currently experiencing. Some felt strongly that Local Authorities should not be required to be involved and that people should be able to apply directly to ILF Scotland, supported where appropriate by e.g. charitable organisations they were already involved with.

2.8 Additionality

Should ILF in a re-opened fund continue to be additional to statutory funding and if yes, should it focus on non-personal rather than personal care?

Response

All attendees felt strongly that an ILF Scotland award should remain additional to any funding received from social work and that ILF should not become a replacement for care and support that Social work is statutorily responsible for. Concerns were expressed that ILF should not be used to prop up domiciliary care needs, previously funded by Local Authorities. ILF should be treated as ‘truly’ additional, empowering people to live independently, making life worth living and enabling participation in activities and interests in a person’s community.

2.9 Use of ILF Scotland Funding

Should recipients of a re-opened Fund be able to use their funding in the same way as the current Fund or in a different way?

Response

The vast majority of attendees felt that the current set of principles outlined in ILF policy were fit for purpose, but they would like to see a greater degree of flexibility and creativity / innovation in using it. To help identify opportunities for using the funding in a variety of different ways, participants would like more information and ideas about how ILF funding might be used to achieve independent living outcomes, ideally from existing ILF Scotland recipients via, for example, more case studies on ILF Scotland’s website.

2.10 Prioritisation of Funding

As part of the discussion at the final two events, attendees were asked to consider who should be prioritised for ILF finding.

Many attendees felt that people who are at risk of residential care because of changes in circumstances, such as family breakdown, illness, divorce, or bereavement should be among those prioritised. The groups of people that attendees viewed as a priority included older people, people in rural communities who have a disability, people at risk of losing their job due to disability and people with ‘invisible’ disabilities including complex psychological conditions.

Section 3: Conclusion

The events were well attended overall and proved to be a useful mechanism for effective engagement with those with a vested interest in a successful re-opening of ILF Scotland. The discussions encouraged rich and varied contributions and feedback on the events was positive.

The feedback on policy areas discussed at the events informed the recommendations made by the Working Group to the Minister. The Minister agreed all of the recommendations.

All comments on the day were recorded and captured by a graphic facilitator. Graphics were shared with attendees and posted on our website along with Easy Read versions of all other re-opening documentation. A web page dedicated to the re-opening can be found at https://ilf.scot/re-opening-ilf/.

ILF Scotland will keep the website up to date on progress in re-opening the fund in April 2024.

Appendix A – Event Accessibility Ratings

Event: Edinburgh
Date: 12 December
Location: Murrayfield Stadium
Attendees: 64
Accessibility Rating:
Excellent: 39%
Good: 23%
Fair: 5%
Poor: 5%
No response: 28%

Event: Online
Date: 11 January 2024
Attendees: 19
Accessibility Rating:
Excellent: 67%
Good: 33%

Event: Aberdeen
Date: 17 January 2024
Location: P&J Live
Attendees: 10
Accessibility Rating:
Excellent: 100% (1 response)

Event: Online
Date: 25 January 2024
Attendees: 11
Accessibility Rating:
Excellent: 43%
Good: 57%

Event: Stirling
Date: 30 January 2024
Location: Stirling Court Hotel
Attendees: 15
Accessibility Rating:
Excellent: 100%

Event: Online
Date: 12 February 2024 (Evening)
Attendees: 21
Accessibility Rating:
Excellent: 67%
Good: 33%

Event: Glasgow
Date: 19 February 2024
Location: Glasgow Science Centre
Attendees: 82
Accessibility Rating:
Excellent: 68% 
Good: 3%
No response: 29%

Appendix B – Issues and Questions Paper

Issues to be discussed and questions that we will ask.

The Scottish Government’s 2024 to 2025 Programme for Government makes the following commitment:

“Re-open the Independent Living Fund on a phased basis, with an initial £9 million in 2024-25 to enable up to 1,000 additional disabled people with the most complex needs to access the support they need and deserve to live independent lives.”

We want to talk to people interested in the re-opening of the Fund to make sure we take as many people’s views into consideration as possible. We hope that by talking with and listening to disabled people, their carers, and other people interested in independent living for disabled people, we will be more likely to make the re-opened ILF a success.

Thank you for your help as we work towards re-opening the Fund in April 2024.

1.    Qualifying for ILF (Threshold Sum)

Currently, to qualify for ILF, recipients must receive a minimum amount of money from their local authority via ‘direct payments’ / ‘self-directed support’. For most ILF recipients, this minimum amount is currently £340 per week.

The Independent Review of Adult Social Care recommended re-opening ILF with a new minimum amount of £600. This would mean that a person would have to receive at least that amount every week to be considered for ILF.

The larger this figure is, the less people will qualify for ILF. The smaller this figure is, the more people will qualify. We will need to find a balance between ensuring as many eligible disabled people as possible can benefit from a re-opened ILF, whilst ensuring the level of award is sufficient to make a difference to people.

Question

Do you think people should receive a minimum amount of funding from their local authority before they could be considered for additional ILF Scotland funding and if yes, how much should it be?

2.    Maximum Award

ILF Scotland currently make weekly awards to people up to a maximum amount of £475 per week.

Question

Should the re-opened fund have a maximum weekly award and if yes, how much should it be?

3.    Age

ILF age limits are currently 16 to 64 and an award remains in payment for life assuming the person remains eligible in all other areas i.e. no-one would lose their ILF award on turning 65.

For a re-opened ILF, if the age range increases, more people can apply.

We must make sure the initial funding of £9m is awarded to those “with the most complex needs”.

Question

Should there be an age applied for accessing ILF and if yes, what should it be and why?

4.    Managing an ILF Award

Everyone who currently receives funding from ILF Scotland must have an ‘Award Manager’. This person (or organisation) is responsible for making sure that ILF is managed properly and in the best interests of the recipient.

The Award Manager would normally act as the employer of any Personal Assistants / enter into contracts with care and support providers. The following people can currently act as an ILF Scotland Award Manager:

• the ILF recipient themselves
• someone with Power of Attorney / Financial Guardianship / Benefits Appointee
• a third party (such as a family member or management organisation)
• Social work representative employed by the person’s local authority.

Question

Should awards be managed in a re-opened fund in the same way as they are currently?

5.    Charging for ILF (Available Income Contribution)

Most people who receive ILF currently pay £43 per week towards the cost of their support. We call this an Available Income Contribution

ILF Scotland works out how much someone is due and then deducts £43 from the weekly amount it pays out.

This is also the case for many Local Authorities in making Direct Payments or Option 1 of Self-Directed Support. There are procedures in place to ensure that recipients are not double charged by paying a charge to the local authority and a contribution to ILF.

As with Local Authorities, ILF Scotland can waive charges for people who can’t afford to pay them.

There is a commitment from Ministers to remove social care charges and ILF charges in future.

Question

• Should a re-opened ILF have a charge of £43, another amount, or no charge?

6.    Capital

To receive ILF, recipients must not have capital of mor e than £32,750.

Capital includes savings, investments, second homes, land, one-off lump sums and income from some Trust Funds.

If a current recipient receives a payment / an asset such as a property, where the value is more than £32,750, their ILF will stop.

ILF Scotland will not take savings intended for a disability related adjustment.

If someone receives income related benefits, ILF Scotland assumes that any capital has been accounted for as part of that assessment.

Question

Should the re-opened ILF have a capital threshold and if yes, how much should it be?

7.    Relationship with Local Authorities

ILF Scotland and Local Authorities should work closely with the recipient to agree a package of care and support that is in the best interest of the person.

A joint visit to the recipient is carried out every few years to review how things are working to best allow people to achieve their independent living outcomes.

Question

Should there continue to be joint ILF and Social work reviews every few years for a re-opened ILF?

8.    ILF and Statutory Funding (Additionality)

ILF provides support towards the cost of care / support for disabled people to enable them to live independently in their own homes.

To access ILF, the local authority has to already be paying for social care for the person.

When ILF established the Fund in 2015, Local Authorities made applications. Direct applications by the disabled person were not allowed.

ILF was never intended to be the primary funder in any jointly funded package of care and support. It should instead be additional and complimentary to the Local Authority Funding.

The Local Authority is responsible for locally assessing eligible need.

A re-opened ILF should make sure that any funding is over and this and has a clear focus on achieving additional independent living for disabled people.

Question

Should ILF in a re-opened fund continue to be additional to statutory funding and if yes, should it focus on non-personal rather than personal care?

9.    Use of ILF Scotland Funding

ILF is intended to enable recipients to use their funding flexibly to achieve Independent Living outcomes in a way that suits their individual needs and helps overcome barriers they might face to independent living. ILF Scotland funding can help recipients to:

• have choice and control and to live their life in the way they choose, considering risks that may need to be managed.
• be an active citizen by being involved in and contributing to, things that are important to them.
• be involved in commissioning or recruiting the support they require.
• live with dignity and respect.
• maintain or develop physical, mental, and spiritual health and wellbeing.
• participate in community life through work, learning, training, and personal interests.
• maintain relationships with family, friends, and wider networks.

Recipients should discuss and agree how they wish to use ILF Scotland funding with an ILF Scotland Assessor during an arranged review.

Question

Should recipients of a re-opened ILF be able to use their funding in the same way as the existing Fund or in a different way?

Co-Production Working Group Recommendations for Scottish Ministers on the Policy to Re-Open the Independent Living Fund to New Applicants in 2024

The Programme for Government commitment states that the Scottish Government will re-open the Independent Living Fund (ILF) on a phased basis with an initial £9 million in 2024 to 2025 to enable up to 1,000 disabled people to live more independently.

Part of this commitment was that the re-opened Fund would be co-produced with disabled people and other stakeholders. A Co-Production Working Group was convened to develop the policy options for opening the ILF to new applicants in Scotland.

Members of the group consist of disabled people’s organisations, local authorities, representative bodies (including COSLA, disability organisations and carers) and third sector organisations. The Group additionally included members who have direct knowledge and understanding of living with an impairment. View the full membership of the Group on the ILF Scotland website.

The aim of the Working Group was to co-produce recommendations to advise Ministers on the policy to open the ILF to new recipients including the access principles for new applications; and in doing so bear in mind that this policy should be affordable and sustainable, within the available funding from Scottish Government.

Agreement of Initial Broad Principles

The group welcomed the opportunity to re-open as quickly as possible in recognition of the many challenges and barriers to independent living that disabled people are currently facing. The group recognised that potentially significant policy compromises would be required to achieve the earliest possible opening and, critically, to ensure affordability and sustainability.

The group recognised that the UK Fund had a number of features that could be developed and improved but that it would not be possible to fully address these in the available timeframe as this would significantly delay re-opening. The recommendations below should, therefore, be seen as a starting point that will allow the earliest possible re-opening to benefit disabled people. The group will continue to meet beyond the re-opening date with a view to co-producing improvements to the fund in the first year of its operation. (See Year One Post Opening Priorities below.)

Definition of ‘Complex Needs’

The UK All Party Parliamentary Group on Complex Needs and Dual Diagnosis have established that a person with complex needs has “two or more needs affecting their physical, mental, social, or financial wellbeing”. Such multiple needs are likely to increase the barriers to independent living faced by disabled people, including those that prevent people leading a full life as equal citizens, including problems with accessing certain services and amenities, which can make independent living outcomes difficult to achieve without assistance.

Needs that are assessed as eligible to be supported by the Local Authority are ordinarily not appropriate for ILF funding as ILF funding is not intended to replace those areas that should be funded by another body.

ILF Scotland will use its professional judgment to evaluate the difference that its funding could make towards meeting key independent living outcomes that are currently unmet and will prioritise those:

• At risk of residential care or other forms of institutional, congregate, or non-community-based living.

• At risk of family breakdown due to unpaid carer stress.

• Experiencing loneliness and isolation, because of disability.

• Requiring assistance to develop or maintain relationships, because of disability.

• Requiring support to access social and recreational opportunities.

• Requiring assistance to access active citizenship.

• With significant independent living outcomes identified by their local authority that do not fall within local eligibility criteria.

Recommendations

1.     Qualifying Benefits

Access to the Independent Living Fund should not be linked to receipt of Disability Living Allowance, or other disability-related benefits, in the way that was the case for the Department of Work and Pensions (DWP) administered UK Fund.

2.     Age

The re-opened Fund will be open to applications from people aged 16 or over.

3.     Threshold Sum

The group recommend that the Fund should re-open using a ‘threshold sum’ as a key access principle. The threshold sum is the value of the local authority / SDS care package and has been used by ILF since 1993 as a proxy for level of need. Initial use of this well-understood approach will allow the Fund to open promptly.

Following deliberations, the group recommend that the Fund should open with a threshold sum of £800 per week.

To ensure that the Fund is affordable within the £9m allocation committed to by Ministers in the first year, each local authority area should be allocated a share of 1,000 places in the Fund, with places to be allocated proportionately based on the size of the population and the percentage of disabled people in that area. The allocation per Local Authority area can be found on the ILF Scotland website.

4.     Capital Threshold

The group recommend that the re-opened Fund should not impose a capital limit on applicants. In practice, capital limits will be applied by local authority partners as part of their SDS assessment process.

5.     Maximum Award

The Fund should open with a maximum award of £330 per week. The group considered that 10 hours of additional independent living focused support and assistance was meaningful in relation to the realisation of Article 19 of the UNCRPD and will allow a typical award to contribute to making a meaningful difference to the ability of a disabled person. Using the current ILF average hourly rates awarded of £22 per hour, taking 10 hours as the average, and 15 hours as the maximum, this equates to £330 per week.

The group did recognise that awards based on these average costs will not always be sufficient to secure the intended outcomes but recognise that setting an affordable maximum award is essential to working within the funding provided by Scottish Ministers and thereby ensuring the sustainability of the Fund.

6.     Award Management

The Fund should be accessible to those who are unable to manage their own affairs. Management of awards by suitable third parties should be permitted, as in the existing Fund. Policies should emphasise supported decision making, rather than substitute decision making, where this is possible. Local Authorities should not normally manage awards.

7.     Available Income Contributions (ILF Charges)

Available income contributions (charges) should not be a feature of the re-opened Fund. Ministers have committed to removing social care charges, including ILF charges, within the lifetime of the current Parliament. Therefore, the position of the group is that it does not make sense to re-open the fund with an effective charge in place.

The group recognised that this would create an anomaly between existing ILF recipients, most of whom make a contribution of £43 per week towards the cost of their ILF funded assistance, and new recipients of the re-opened Fund. Nevertheless, the group concluded that this was preferable to introducing charges for new recipients, most of whom will already be paying social care charges to their local authority.

8.     Additionality of ILF              

New ILF awards should be truly additional to and used in ways that genuinely deliver improved independent living outcomes for recipients. ILF awards must not be used to fund outcomes that sit within the boundaries of locally assessed eligible need and must at all times fund outcomes that are in addition to eligible need. Local authorities will be asked to confirm additionality at the point of application.

9.     Relationships with Local Authorities

Local authority practitioners should complete applications. This is the only application route that can be ready for April as the technology, agreements and relationships are already in place.

It is important for the success of the Fund that ILF Scotland and Local Authorities work well together, because of the LA’s knowledge of their own populations and because they hold key information that will be required for an ILF award to be approved. However, the recipient should always be at the centre of a three-way relationship with ILF Scotland and their Local Authority.

In the near future, consideration should be given to developing an application route that is initiated and led by the individual (or their appropriate representative, which may include charitable organisations already providing support to disabled people in the local community) rather than by their local authority. (See Year One Post Opening Priorities below.)

10. Use of ILF Funds

The group recommend that existing ILF policy on use of funds should be maintained for new recipients. The objective of ILF Scotland’s policies on the use of funds awarded is to maximise flexibility, choice and control for recipients whilst ensuring entitlement to welfare benefits is not compromised and ensuring appropriate use of public funds.

Year One Post-Opening Priorities

The following areas will be considered by the group as soon as possible after re-opening:

• The inclusion of an unpaid care component within the threshold that reflects the valuable contribution of unpaid carers.

• An accounting model applied by ILF Scotland to address the differing costs across various local authorities.

• Replacing a single monetary value threshold sum with a graduated threshold entry model.

• Consideration of any potential role for ILF in supporting those living away from home in institutional like settings to return to and participate in their local communities.

• Monitoring of the real time cost of care experienced by new recipients of ILF, e.g. costs of recruiting and retaining Personal Assistants.

These pieces of work would seek to refine how the threshold works with greater equity and targeting in mind.

Alternative means of determining access to the re-opened fund will be considered within the first year. The objective will be to move closer to a rights-based model and a more sophisticated and consistent means of identifying and prioritising those facing the greatest barriers.

Conclusion

The above forms the basis of the recommendations to the Minister for Social Care, Mental Wellbeing and Sport.

Tuesday 20 February 2024 – 10.30am to 12.30pm

In Attendance:

Peter Scott, ILF Scotland (Co-Chair)
Iain MacAllister, Scottish Government (Co-Chair)
Calum Macaulay, Glasgow Centre for Inclusive Living
Cameron Smith, SCLD for Andy Miller
Donna Murray, Social Work Scotland
Gaby Nolan, Lothian Centre for Inclusive Living
Jim Elder-Woodward, ILF Scotland Advisory Group
Andy Higgins, ILF Scotland Advisory Group
Fran Holligan, COSLA for John Urquhart
Lesley McLaren, PAMIS for Jenny Miller
Laura Kerr, Social Work Scotland – to leave early
Lyn Pornaro, Disability Equality Scotland
Margaret Petherbridge, Falkirk Council / ILF Liaison
Catherine McGoldrick, Health and Social Care Scotland
Sam Smith, CCPS
Tressa Burke, Glasgow Disability Alliance
Donald Macleod, SDS Scotland
Oonagh Brown, Scottish Human Rights Commission

Present:

Robert Peterson, Scottish Government
Steven Hanlon, Scottish Government
Lauren Glen, Scottish Government
Jack Blaik, Scottish Government
Harvey Tilley, ILF Scotland
Robert White, ILF Scotland
Linda Scott, ILF Scotland
Erika Mather, ILF Scotland
Stephen Wilson, DES

Apologies Received:

John Urquhart, COSLA
Fiona Collie, Carers Scotland
Pauline Nolan, Inclusion Scotland
Andy Miller, SCLD Cameron Smith
Jenny Miller, PAMIS

Item 1: Welcome

Everyone was welcomed to the 8th meeting of the Co-Production Working Group and thanked immensely for their work and contribution to this co-production process.

Apologies shared: from Fiona Collie (Carers Scotland) and Pauline Nolan (Inclusion Scotland - both approved and / or provided comments on the Paper 16. Also, apologies from John Urquhart (COSLA) but Fran is attending on his behalf. Cameron Smith attended on behalf of Andy Miller and Lesley McLaren, (PAMIS) for Jenny Miller.

Item 2: Declarations of Interest

None raised.

Item 3: Minutes of Previous Meeting

Minutes circulated in advance of this meeting. Follow up question to minutes as discussion on rationale re £20 per hour amount being used for calculating the average cost of care was not included. To be discussed later during the meeting.

Item 4: Matters Arising and Actions

Update provided on each action recorded during last meeting.

Action 1: SG Sponsorship team to correct note with the appropriate title for Cat McGoldrick position.

Completed and forwarded to ILF to publish the correct version.

Action 2: ILF to amend wording in the application system from “eligibility” to “access”.

Action completed by ILF Digital Team.

Action 3: ILF and SG to consider further the rationale for a maximum award level of £300 to ensure that the proposed level of award is consistent with meaningful independent living outcomes.

Paper 16 provides updated rationale for a maximum award level to be set for £330.

Action 4: ILF and SG will reflect on discussion and come back to the group with draft recommendations for the formal report to Ministers, taking account of the views expressed.

Paper 16 shared in advance of this meeting reflects issues discussed during last meeting and will be considered later today.

Item 5: Co-Production Check In

Easy Read version shared in advance. The group expressed appreciation for paying attention to the co-production process itself, members felt that they are being listened to and have ways of raising concern. It is a good experience and comparable to experience during establishment of Social Security Scotland, however it is not common across all other initiatives. The process developed seems like a good model to take forward where balance between contributions and pragmatism was achieved.

Request was made to create a forward programme of future meetings as it is a substantial commitment, and it would support planning and organising ahead.

Action: Plan and dates for the continued Co-Production Working Group process to be shared with group members as soon as possible.

Item 6: Report and Recommendations

A short introduction was provided to allow time to go through each recommendation. The Chair recognised that compromises had been made to ensure prompt re-opening. Some group members issued comments and expressed contentment with the paper ahead of the meeting, subject to amendments including use of language around “loneliness” in accordance with social model of disability.

·      Qualifying Benefits

Group approved and content with this recommendation. It was emphasised that to be entitled to social care support, there is no need to receive DLA / PIP / ADP; as we are linking ILF with social care support, there is no need to maintain the link with social security benefits.

·      Age

The Group recommends re-opening the fund with no upper age limit and reviewing the lower age limit at later stage.

Feedback from latest Glasgow engagement included questions raised why ILF to support 16+ whereas 18+ would be more appropriate as young people with complex needs are more likely stay in school until 18 years of age; nonetheless this perspective was represented by a minority.

·      Threshold Sum

Although number of options around threshold sum were discussed so far and variations between £800 and £1100 debated during the process. The recommendation states the sum of £800. Although it is not ideal, everyone agrees it is a good practical solution to start operating as soon as possible and that this sum offers a middle ground. There was consensus on the notion that further development of alternative model is required to move away from threshold all together.

It has been emphasised that the proposed figure of £800 would allow more than 1000 people to be eligible for the fund. Hence an additional mechanism is needed. A method of allocation is currently being developed, which takes into account factors such as population size in a given LA, deprivation level and prevalence of disability; there is no formal proposal of allocation at this stage and SG colleagues are working with LG analysts to finalise a proposal that will ensure that the method of distribution of the fund adheres to principles of proportionality and equitability.

Some risks discussed in relation to lowering the threshold. There is a risk of not knowing practical impact re number of applications. There are ongoing conversations with social work practitioners across the country and it seems that many provided reassurance that they already have individuals on their caseload who may benefit from access to the fund. However, it is important to highlight that Senior Management reports significant challenges re workload and social work staff being overwhelmed, so it is important to be cautious about capacity re handling the applications process.

It was pointed out that this is a resource led intervention, so we need to commit to living within the allocated budget. Hence, if allocated places are used up within first 6 to 8 months then we will not have the option to continue admitting new recipients; perhaps a waiting list can be considered until there is confirmation of the Year 2 budget allocation. Taking a learning and testing approach during Year 1 is most important – so in that spirit we are open to improve on it in the future.

Transparency is needed in relation to compromises that we are making, so that is clear when and why we are doing certain things.

There was a request to clarify the proposal regarding the process of making an application and who has responsibility for making the final decision and determining access to the fund. It was voiced that focus should be on cooperation and it is a joint process so social work practitioners are initiating the process and submitting the application on behalf of the person. ILF will then complete its assessment and determine whether it can be funded or not.

It was emphasised that communication with social work practitioners is crucial to ensure a phased and steady flow and intake of applications over the year to allow ILF assessment and processing capacity to operate smoothly. ILF Scotland will produce guidance for social work practitioners and around late May ILF assessors will be available to support LAs with their time and advice if that is needed. There are a mix of views on whether the re-opened fund will experience a steady trickle of applications or a massive surge at once. ILF Scotland will work to manage this uncertainty. Some LAs are already engaged positively and this is reassuring.

The threshold recommendation is in broad alignment with feedback from wider engagement; a common voice during the co-production process centred around the need for review and changes in the future, particularly to allow assessment of applications on a case-by-case basis rather than adherence only to thresholds limits.

It was questioned how we can ensure that we are proactive and not reactive during roll out of this fund. Reassurance was given that numbers of applications from each area will be monitored closely from the very beginning and communication with each area will follow if low numbers of applications are recorded. This monitoring will allow ILF Scotland to respond and adapt depending how things are materialising.

There is no perfect mechanism of the fund distribution; the allocation method is not ideal but the first come first serve mechanism is not fair either and can create lots of errors and injustice. There is a need for ongoing dialogue, building relationship with LAs and this will help with planning and improving in the future. The possibility of creating a wating list to be considered if the number of applications exceeds allocated places. It will assist in identifying levels of unmet need across communities as well as providing information to support the development of the Fund.

ILF Scotland is developing its Communication Plan for the re-opening, which it will implement publicly once the Minister has agreed the re-opening policies.

Action: Allocation method to be finalised and confirmed.

·      Capital Threshold

Group recommends not to impose any capital threshold; this approach stems from the believe that everyone is entitled to save up and be able to spend their savings on issues not related to their disability; additionally, LAs already have their own processes for assessing capital and this should be sufficient.

Feedback from wider engagement was more varied and some advocated that there should be a capital threshold should be there but perhaps at a higher level (between £50,000 and £100,000) in order to target public resources towards those who have no other way of receiving support; others advocated for solutions where various tariffs or tapers are applied to make this cut-off fairer.

Other pointed that capital threshold refers only to financial elements, assets such as home or other dividends are not being accounted for. For the existing fund, ILF would disregard any disability related expenditure as capital and only general savings count as capital.

·      Maximum Award

Some questions were raised re rationale for the figure provided in the recommendation paper. The figure was increased following the last group’s discussion to £330; ILF analysed award levels of current recipients’ data and rates paid to various providers: organisational care providers, day centres and PA rates. An average hourly rate of £22 was used for the calculation with an average of 10 hours of support, to arrive at the £330 figure. However, it is important to be mindful that those average hours of support are over and above locally assessed eligible needs.

It was voiced that unfortunately across many LAs only critical and personal care is currently supported, and less social needs will be funded going forward. What constitutes a meaningful level of extra independent living support depends on what people are already doing, and it may vary significantly, for instance, for people in employment for 35h a week, or people with learning difficulties. Hence, not just the hours of support are meaningful but type of services too. It was acknowledged that it is hard to define a “meaningful” way to help to capture all those variations.

It has been pointed out that ILF is not able and will not to be able to meet all independent living outcomes and it would be best to emphasise that ILF’s purpose is to make a contribution towards achieving those outcomes and that what are we doing is a starting point towards the ability of a disabled person to live independently.

Concerns were voiced re calculation and methodology presented for establishing the maximum award; if scrutinised it does not represent the real experience of a disabled person’s cost of getting support and does not account for hidden cost that are present and often being absorbed by the family; all those costs are affecting the person’s ability to receive support.

It was pointed out that the availability of ILF funding until 2010 helped shape pre SDS joint statutory and ILF funded support. From 2010 to 2024 only statutory support has generally been available to local authorities to meet all levels of eligible need thus creating an uneven picture of unmet need across the country. In this circumstance, ILF would maintain the value of its existing commitment to the person and do what it could to ensure that the LA was the major contributor.

Current risks were emphasised of many disabled people experiencing budget constraint during reassessment for their SDS budget. Concerns about upcoming social care reviews are widespread, with many anxious about reassessment and the level of impact on their day-to-day life. Also, this creates a risk that ILF will be inappropriately used to balance and top up SDS allocations rather than provide added value to them.

Some indication was given to extra challenges for those living in rural and island communities as it can take a whole day to participate even in few hours activity. The landscape of social care across the country has many differences and in the next 6 months it can change even further. It has been already observed that people are dropping services because they are not able to pay charges.

It was acknowledged that more transparency is needed in relation to the calculation presented re maximum award level being set as £330; the reality is that given the fixed budget, the amount presented is what we can afford given the potential number of new recipients.

It was noted that the most disadvantaged people may not be able to make use of the funding they need because of hidden costs required to subsidise the costs involved, as the reality is that getting additional money often costs money and those extra costs are often being absorbed by the families.

The desire was expressed to make sure that any learning from rolling out of the re-opened fund be captured effectively in order to support improving wider social care challenges, to help identify gaps in need, and connect with other agendas; hence request was made to include monitoring of how the fund operates to the list of Priorities for the Year 1

Action: Wording re Maximum Award in Paper 16 to be amended to reflect affordability issues in more transparent and open way.

Action: Monitoring and Real Cost of Care topics to be added to the Year One Post-Opening Priorities list.

·      Award Management

The group confirmed this recommendation.

·      Available Income Contributions (ILF Charges)

It was reported to the group that during the wider engagement events, attendees were overall supportive of no charge; however recently the opinion shifted slightly in favour of charge and that the amount of £43 should remain for new applicants, or some flexibility be built in e.g. by adding a taper or for it to be possible for those who wish to make contributions voluntarily.

It was suggested that ILF’s charge is lower than LAs’ charges so people are better off paying ILF. New applicants will be already likely be paying LA charges; the emphasis was placed on the ongoing ILF policy that recipient should not be the subject of double charge. However, this depends on each LA’s charging policy. It was noted that we should be cautious of making recommendations that seek to take advantage of existing LA charging policies or rely on them remaining unchanged. In other words, we should avoid re-opening the fund with charges because this is the right thing to do.

Also, there is a need to be explicit that charges determined by LAs are within LAs scope, not ILF. The interaction of LAs and ILF is complex and differs across the country and agreeing a principled view of the matter, rather the details, is the best solution.

Others emphasized that healthcare is free of charge so social care should also be free at the point of entry.

The Group confirmed that they want to maintain the recommendation of re-opening with no charges.

·      Additionality

Although there is no absolute guarantee that ILF additionality is to be protected in the re-opened fund, the mechanism developed requires LAs to confirm the level of SDS budget (at the point of application or prior to) and any outcomes funded by ILF should be above that.

There is a need to update the Joint Statement between COSLA and ILF Scotland. Although the last version is still accurate, we need to add wording to reflect re-opening and benefit of the new award.

It was requested that ILF ensure through updates to operational policies and procedures that the additionality principle is protected.

It was requested that there be more focus on partnership work among ILF Assessors and LAs and that this be reflected in the Recommendation paper language.

Action: Wording in the recommendation to be amended to reflect focus on partnership work between stakeholders (ILF / Assessors and LAs / SWs).

·      Relationship with LAs

It was outlined that the re-opened fund has an LA-led application process; the reliance on social work applications is adding a bit extra pressure to their workload. However, reassurance been given that in practice it means, on average, approx. 1 application per fortnight per LA (it may vary across LAs) and the current estimate is that it should take no longer than 30 min to complete an application. This in itself is a significant increase in efficiency if compared to the former ILF UK model.

It was confirmed that cooperation with LAs is to be subject to continuous monitoring.

·      Use of ILF Fund

It has been commonly accepted during wider engagement that ILF’s existing policies on the use of funds be maintained, with some focus on greater flexibility. It has been agreed that any use of funds in non-conventional ways is to be requested first by the recipients and await formal approval by ILF. Funding non routine support by approval offers additional protection against any possible consideration of ILF funding as income and will be maintained in the re-opened fund.

The group approved the recommendation.

·      Year One Post-Opening Priorities

The group is content with Year One Post-Opening Priorities outlined in Paper 16 but also willing to add points to reflect today’s discussion on the inclusion of hidden costs of receiving care and monitoring of the re-opened fund.

·      Prioritisation List

It has been pointed out that prioritising those “of the at risk of residential care” only is not sufficient and there is a need to capture those at risk of being placed at other type of institutions. This is the policy intention but it just needs to be clearly stated.

Action: Wording re the prioritisation list in Paper 16 to be amended to include not only those at risk of residential care but also other types of institutional support.

Item 7: Engagement Events Feedback

Relevant feedback from the engagement events was provided during the meeting while recommendations were discussed.

Item 8: AOB

None raised.

Item 9: Next Meeting Arrangements

To be schedule for around mid-March to confirm final arrangements.

Updates will be provided via email if the group needs to be aware of anything before next meeting and / or in relation to putting forward the recommendations to the Minister.

Online, 12 February 2024

First Group Discussion

Minimum Qualifying Amount (Threshold Sum)

The Threshold Sum means the amount of money that a disabled person must get from their local council to get Independent Living Fund money too.

Discussion Reponses

• If the threshold is too low people will get smaller amounts of money and not as much benefit from it, but the Local Authority are also reducing funding. People have less in their care package so if it is £600 lots of people won’t be able to get access.

• Local Authority do look at the ILF funding when they are setting their amount. They can see how much people get and then they reduce their contribution. If they didn’t have to provide statutory care needs people might lose it altogether.

• It should be raised from £340 but not maybe as much as £600. It must be protected so that the Local Authority are not able to use it for things that should be covered in the care package.

• Thresholds are different for different local authorities. It does not seem like the same rules apply everywhere.

• £900 is the amount that people are at risk of residential care. This should be an amount to think about when it comes to thresholds.

• Should think about lowering the threshold because Self Directed Support (SDS) budgets being cut and people have less money from Social Work now than ever.

• Hard to decide on an amount. If it’s too high then lots of people may not get access because of Local Authority cuts.

• No threshold but instead ILF should provide all direct payments.

• This should not be about a threshold. We need to think about the level of disability and people that are not getting any support. People who need care 24 hours a day will get the support they need but there are lots who don’t have any support.

Maximum Award

The Maximum Award is the biggest amount of money the Independent Living Fund can give to someone each week.

Discussion Reponses

• Fairer to re-open to more people by having a maximum award but the current maximum award is out of date because everything costs more than it did in 2015.

• Maybe we need a slight increase. Keeping it similar will make sure more people will get help. It could be around £550.

• Costs more for support staff now and people will end up with less hours as a result. Money won’t go as far so the maximum award needs to be a bit more.

• Worried that social services will cut back and hours are being cut down. We need to take account of what a person needs and ILF has a role to play in getting social care packages back up to the level they were at before.

• People who don’t have social work support will be missed if this is about a threshold sum as they don’t have a budget.

• Lots of people with complex needs rely on unpaid carers and don’t have the level of Social Work support they need. They would still have unmet needs if the decision is based on the threshold sum. More flexibility is needed around the threshold sum.

Age

In this document, Age means how old you need to be to get money from the Independent Living Fund.

When the fund was open to applications you needed to be between 16 years old and 64 years old.

Discussion Reponses

• This award is for people who have had a disability all their lives. People should have had support for a disability before they were 64 years old.

• People should be able to apply after the age of 64 because of issues that have come about due to getting older.

• Understand the need for an age limit. Without this the fund will be spread too thinly. Other support is available after 65 years old and before 16 years old.

• Age limit should be 16 years and over and should be a lifetime award.

• Should start from 18 years old for as long as you need it. No cut off.

Second Group Discussion

Award Management

Everyone who gets money from Independent Living Fund Scotland must have an Award Manager.

Award Managers can be:

• the person getting the funding
• someone who has some control to support the person – like a Financial Guardian, for example
• someone else – like a family member
• Social Work staff

Discussion Responses

• The way ILF do this now is working. No need to change it.

• Need to think about what happens when Award Managers get older. It can be good to include a third-party agency or support organisation but this is an individual choice.

• There needs to be an Award Manager. If not how would it work? Don’t want to make it more complicated than it needs to be.

• Good idea to have payroll services in place with support from an agency as takes away a lot of the stress and anxiety from the financial side of things.

• Recipients should be at the heart of this process and should be as involved as possible. Sometimes it is good to have other parties involved like Centres for Inclusive Living to promote independence and make it possible to take risks.

• Social Work should not take on the Award Manager role. Better that this is handled by someone who know the recipient very well.

• Recipient should manage their own award wherever possible.

• More support and advice is needed for Award Managers to help them with this role.

• Maybe recipients and Award Managers could buddy up with other recipients and Award Managers to learn from them.

Charging for ILF (Available Income Contribution)

This means an amount of money that a disabled person pays towards their support – on top of the money the Independent Living Fund pays.

At the moment it is £43 per week.

Discussion Reponses

• Charging – available income contribution (currently £43 deducted at base with no double charging and can be waived in certain circumstances).

• If paying a small charge means more people get access to ILF then it’s fair the budget from the Government to ILF is still limited so we need to make it last.

• It is too complicated to work out what charges people need to pay between ILF and the Local Authority. Would be better to have no charge.

• Feels like a charge for being disabled. But if ILF don’t charge the charge would be transferred to the Local Authority.

• If there was no charge it would allow for that money to be spent on what recipients need.

• Some local authorities have different charges. Feel like people may be worse off if they are being charged by the local authority.

• There should not be a charge for independent living.

• If there has to be a charge it should be clear how the money is used to keep ILF going in the future.

Capital Threshold

This means the amount of money someone has in things like:

• savings
• investments
• second houses
• land

At the moment the Independent Living Fund capital threshold is £32,750.

This means that if someone has or gets this amount of money, they cannot get Independent Living Fund money.

Discussion Responses

• Capital sums for getting Personal Independence Payment (PIP) are much lower. Don’t really understand how this amount was decided.

• There should not be a capital limit.

• Could be many different reasons why people end up with savings. They should not be punished for this.

• Those who are in a very good financial position for example millionaires should not get access to ILF.

Third Group Discussion

Relationships with Local Authorities

At the moment both local councils and the Independent Living Fund give money together to disabled people.

Independent Living Fund aims to visit each disabled person once every few years to check everything is going well.

A social work staff member from the local council should go along too. And the person themselves should be asked what they think.

Discussion Responses

• People could see why it might be important to have good relationships between ILF and the Local Authority, and agreed that this sounds good, but in some areas, it seems like this would be difficult and lots of time is wasted trying to get Social Work to come to reviews.

• Some people explained it has been a very long time since they have seen anyone from Social Work because they only have enough workers to try and fix the big problems. They are ‘fighting fires.

• Some people the think it would be better if could run without having to involve Social Work.

• Other people said it can be a good thing the recipient if ILF, Social Work and the recipient can come together for reviews.  ILF Assessors can help to make sure Social Work money is used for the right things, like personal care.

• People said it is very important for the person who is cared for to always be at reviews, and ILF and Social Work can work together to make sure they do the best they can for the recipient.

• One person said that some Social Work departments don’t have enough people and they are always trying to ‘catch up’. People should be able to go ahead with ILF reviews without Social Work involvement, this is a good thing because the review is all about the person and people get the time, they need to do this properly.

• Some people said the reviews should happen more often than every two years.

ILF and Statutory Funding (Additionality)

Independent Living Fund money was not meant to be the main funding for disabled people.

It should be topping up the amount that each local council agree to pay.

Discussion Responses

• Social Work should be the main funder. ILF should be a top up to the amount that each local council agrees to pay.

• ILF should stay separate to Local Authority funding. It should be flexible and down to the person themselves to choose how to use ILF funds because it is about their needs.

• Local Authorities are cutting funds. ILF funding may be the only thing keeping someone out of residential care.

• Personal care is a statutory responsibility for Social Work and must stay this way. ILF money is not for personal care. It is for independent living outcomes.

• Different Local Authorities fund different types of personal care. This means some people have to use ILF money to pay for PAs to take them to medical appointments or cook for them This should all be covered in personal care but with Local Authority cuts it is not.

• ILF Assessors can look at the whole package of support make sure that Social Work remains the main funder.

• Additionality is important for unpaid carers. Money can be used for no residential respite so that unpaid carers can get a break.

Use of ILF Funding

The extra money that Independent Living Fund gives helps people to choose things that are important to them to help them live more independently.

Discussion Responses

• Flexibility is important because people’s needs change. This allows people to use the money for things like respite so that the family unit can cope.

• We should not create barriers around how to use the funding. It should be used for the biggest benefit of the individual.

• Needs change so flexibility is needed. Sometimes families find themselves in a crisis and respite is needed quickly so being able to use ILF money flexibly is very important.

• We need to be able to be creative with ILF funds and it would be good to see examples and case studies on how other recipients have used their award.

• Being able to socialise and do things in the community is very important and having the flexibility to use ILF funds is something people really need.

• Looking after people’s wellbeing. Having the right support can stop other problems from becoming bigger and make sure people stay healthy and happy.

• ILF is about enabling people to reach their potential and try new things.

Who Should Get Money First?

ILF Scotland wants to make sure that the people with the most needs can get the money they need when the fund opens again.

Some of these people might:

• have to go live in a residential home
• have to move away from their family
• be lonely because of their disability
• find it hard to ask for help or make friends
• need help doing things in the community
• not get money from the local council for all of their needs

Discussion Responses

• Everyone should have a chance to apply. People’s needs change. If you say who should get the money now then some recipients will be at the top of the list but two years from now it could be different because there may be different needs.

• The fund should be used to take away barriers so whoever faces the most barriers in their lives should be the top of the list.

• If families are at the risk of breaking down because Carers can’t cope these people should be high on the list. People can keep going if they get a bit of respite. As Carers get older it gets worse so we need to think about supporting these people.

• If Carers can’t cope the family breaks down and the recipient could go into residential care. The flexibility of ILF means people can try to make sure this doesn’t happen. Described as a ‘life saver’. That’s the only way to put it.

• People who don’t get Self Directed Support (SDS) need to be high on the list because they only get basic care needs met by social work and the rest of the time they are alone.

• Should think about people with complex psychological disabilities. These are ‘hidden’ disabilities but still very life limiting and these are people who have lots of unmet needs.

• Include people who are lonely and cannot get out into the community.

• People with complex disabilities should be high on the list. Social Work will know who these people are.

• Older people who are at risk of residential care should be on the list.

Glasgow, 19 February 2024

First Group Discussion

Minimum Qualifying Amount (Threshold Sum)

The Threshold Sum means the amount of money that a disabled person must get from their local council to get Independent Living Fund money too.

Discussion Reponses

• £600 could be a good starting point but this would mean ILF is only supporting people with lots of needs. Threshold of £400 - £500 might mean it would reach more people.

• Should be possible to have flexibility for different areas. Some Local Authorities are making more cuts than others so this would make it more difficult for some to people to reach the threshold based on where they live.

• Lots of people don’t have enough in their Self Directed Support (SDS) budget. Unpaid carers are filling the gaps. If the threshold is too high these people will get nothing but they have lots of unmet needs.

• Difficult for recipients to understand why the threshold for ILF is different to the threshold Local Authorities use. It would be easier and fairer if they were the same.

• The amount of money people get from Social Work should not be used to decide if they get ILF. Lots of other things are important. A panel of experts should make the decision rather than basing it on a fixed amount.

• Lots of people will miss out if the threshold is too high.

• Different problems in different areas. People in rural communities are isolated. People in cities face more poverty. Everyone is trying to cover the same amount of care and support with less money.

• Having a threshold creates a barrier for people who can’t get funding from the Local Authority. Some of these people might have the highest level of unmet needs.

Maximum Award

The Maximum Award is the biggest amount of money the Independent Living Fund can give to someone each week.

Discussion Reponses

• Current amount is good but could be more flexible. Things change in people’s lives and there may be periods when they need a bit more because of illness or other things so it would be good if there was more flexibility.

• If there is a maximum award more people can apply and the fund can go further to help disabled people.

• 10 hours of support is seen as an amount that can make a difference to people’s lives (Equality Commission). Somewhere around £400-£500 seems right.

• Depends on the needs of the person and should not be a fixed amount. Flexibility is needed. Maybe ILF could match the amount that is given by Social Work.

• Maximum award can’t be more that the current amount (£475). This would not be fair to existing recipients.

• Threshold should be low so more people can get access to ILF. It could be flexible with different stages so that people with a low SDS budget still have a chance to apply for some money.

Age

In this document, Age means how old you need to be to get money from the Independent Living Fund.

When the fund was open to applications you needed to be between 16 years old and 64 years old.

Discussion Reponses

• 16 years old seems young to be living independently. Most people are still in education at this age.

• There are other funds to support young people at this age. 18 years old might be a better age to start from.

• Could raise the lower limit to 25 years old. Transition Fund can support people up to that age but this is for different things.

• No upper limit.

• People are living longer. Don’t discriminate against older people who have a disability. Needs can change later in life and people need more support.

• The age range of 16-64 years old is the same as Social Work. If it changes Social Work might think they don’t have a responsibility to give support to the same range of people.

• If the age limit is linked to state pension it need to go up from 64 to 67 years old and keep changing if pension age changes.

Second Group Discussion

Award Management

Everyone who gets money from Independent Living Fund Scotland must have an Award Manager.

Award Managers can be:

• the person getting the funding
• someone who has some control to support the person – like a Financial Guardian, for example
• someone else – like a family member
• Social Work staff

Discussion Responses

• Any ILF recipient who can manage their own award will want to do this. If that is not possible family members can support but ILF Assessors should be watching and make sure this is the best arrangement for the recipient.

• Social Workers are not the right people to manage awards.

• Award Manager needs to know the recipient well. If it can be a family member this is good but everyone will have someone in their family who can do this.

• Award Managers need to look out for the best interests of the recipient.

• Training support and advice is needed for Award Manager to understand the role properly.

• Using payroll agencies to pay Personal Assistants (PAs) can take away some of the stress but it costs to do this and the costs are going up.

• If the Local Authority has guardianship they can manage an award from someone but this would not be the best arrangement. Better to have help from an independent organisation like Glasgow Centre for Inclusive Living (GCIL).

• Would be better to make the administrative tasks easier. Maybe the award could be paid once a year not once a week and be paid into the same bank account as the Direct Payment. Easier for Award Manager to keep track of spending.

Charging for ILF (Available Income Contribution)

This means an amount of money that a disabled person pays towards their support – on top of the money the Independent Living Fund pays.

At the moment it is £43 per week.

Discussion Reponses

• No logic to keep the charge.

• Happy to pay something to ILF. £43 per week seems ok.

• Local Authority charge is £103 per week but different for different Local Authorities. ILF charge is not as high as this.

• Having the charge in place can keep the fund going for longer and more people can benefit.

• It should be possible to waive the charge when people cannot afford it and may be living in poverty.

• Could it be a flexible charge. People who get a higher rate of ILF pay a higher charge. Some people may not get a lot from ILF and still have to pay £43 each week. This is unfair.

• No charge for the re-opened ILF. Scottish Government are stopping charges for care and support. It should be the same for ILF.

• Worry about the effect on other assessments. If the Local Authority sees there is no charge for ILF they might try to increase what they charge. Might have an impact on other benefits.

• Should be agreed with the Local Authority that no extra charges can be added on that recipients are not expecting.

Capital Threshold

This means the amount of money someone has in things like:

• savings
• investments
• second houses
• land

At the moment the Independent Living Fund capital threshold is £32,750.

This means that if someone has or gets this amount of money, they cannot get Independent Living Fund money.

Discussion Responses

• Unfair to disabled people. If anyone else inherits or wins money they would not be at a disadvantage. Why should it be different for disabled people.

• Limit should be about everyday income based on what it costs to live day to day. Not savings. Everyone should be allowed to save.

• Could there be a higher threshold for a disabled couple. This would be fair.
• People have built up more money during the pandemic because they could not do anything or go anywhere so maybe the threshold should be higher now?

• You shouldn’t have to give ILF money if you get given money from somewhere such as family inheritance.

• Fair. If people have money they don’t need ILF.

• Unfair. Sometimes people have saved their whole life and might have a disability because of something that has happened to them like an accident. They should still be able to get ILF.

• Should be set at the same level used for benefits which is £16,000.

Third Group Discussion

Relationships with Local Authorities

At the moment both local councils and the Independent Living Fund give money together to disabled people.

Independent Living Fund aims to visit each disabled person once every few years to check everything is going well.

A social work staff member from the local council should go along too. And the person themselves should be asked what they think.

Discussion Responses

• The idea of all three parties being involved sounds good but lots of people don’t have good support from Social Work.

• ILF could do the review and only contact Social Work if a change needs to be made. This would help to remove some of the delays caused by Social Work.

• Lots of new social workers won’t know ILF. It is nearly ten years since the fund has been open. Training will be needed for these social workers.

• The recipient should have the choice about Social Work being involved or not. Some Local Authorities want to have control over how people use their money. This is not how ILF is supposed to work.

• ILF and Social Work money should be separate but working together can mean better outcomes for the recipient.

• Differences between different Local Authorities. In some areas people don’t have a named social worker. This makes reviews very difficult.

• Sometimes it may be better to have reviews every yearnot two years apart because things change in people’s lives.

• More flexibility. Reviews can be held at different times to make it easier for recipients and families.

• Receipts and invoices can be added online to make things simpler and take away some of the stress before the review.

• If ILF and the Local Authority can work together it is better but ILF can give out awards and have reviews without Social Work.

ILF and Statutory Funding (Additionality)

Independent Living Fund money was not meant to be the main funding for disabled people.

It should be topping up the amount that each local council agree to pay.

Discussion Responses

• We should be able to use money in different ways. Possible for ILF and Social Work to work together to make sure the recipient is getting the best deal.

• Some Local Authorities are only funding very basic personal care (one bath per week). Some people have to use their ILF money to get extra personal care which should be included in the basics.

• ILF Assessors will work to make sure the Local Authority remains the main funder.

• ILF funding is about outcomes and flexibility is needed to make sure recipients can use the money the way they want to.

• Using money to do new this to be creative and to be included socially in the communities they live in.

• The outcomes people want to achieve are about the person. This is what ILF funds are for not personal care.

Use of ILF Funding

The extra money that Independent Living Fund gives helps people to choose things that are important to them to help them live more independently.

Discussion Responses

• Flexibility to achieve outcomes is what is needed from ILF.

• Smaller amounts for one off trips like using a personal assistant to go on holiday. Not something they would need every week but to have it once a year would make a huge difference.

• Social Work should make sure the basics are in place and people are healthy and happy. ILF should be about building on this. First people’s care is taken care of then ILF is for everything else than can make people happy.

Who Should Get Money First?

ILF Scotland wants to make sure that the people with the most needs can get the money they need when the fund opens again.

Some of these people might:

• have to go live in a residential home
• have to move away from their family
• be lonely because of their disability
• find it hard to ask for help or make friends
• need help doing things in the community
• not get money from the local council for all of their needs

Discussion Responses

• Think about the impact on unpaid carers and families. They are alone and their needs are not identified in the care plan. Families break down when carers can’t cope.

• If there is a risk of going into residential care because things have changed these people need to be high on this list. People can be moved out away from their family and this is not good for mental health and wellbeing. These people should be high on the list.

• People who don’t get funding from the Local Authority can slip through the net. The people who are not known to Social Work should be high on this list because they have no support.

• Older people and people in rural communities who are alone should be high on the list.

• People who might lose their job because of disability should be high on the list.

• People with complex disabilities including Autism as well as other physical disabilities. Difficult for these people to have their social needs met.

• People with ‘invisible’ disabilities including phycological conditions should be prioritised.

Stirling, 30 January 2024

First Group Discussion

Minimum Qualifying Amount (Threshold Sum)

The Threshold Sum means the amount of money that a disabled person must get from their local council to get Independent Living Fund money too.

Discussion Reponses

• There needs to be a threshold although this should be based on the recipient’s needs rather than the amount of money that is available.

• Some people may have problems getting support for the Local Authority and that means they would miss out on being able to access ILF.

• Not sure that the threshold sum should be linked to what average Local Authority budget is. What about people who don’ have Social Work involvement?

• Local Authority budgets are being cut and that might make it difficult to meet any threshold sum.

• If someone has their funding reduced by the Loal Authority will ILF be there fill in the gap in their support.

• People are afraid to have Social Work looking at what they have as they think they will try to take money back.

• A system is needed where people don’t need to receive anything from Social Work to be able to apply for ILF.

• The first assessment should be done by ILF not the Local Authority. Threshold sum is not the best way.

• We need some kind of a marker. It is important. £340 or £600. Whatever it is we know that assessments are not done in the same way across the country so how would we decide who gets funding without a marker.

Maximum Award

The Maximum Award is the biggest amount of money the Independent Living Fund can give to someone each week.

Discussion Reponses

• Difficult to decide. If ILF re-opens with the same Maximum Award (£475) we should look at this again in the future. Does not have to be set now and stay at that level.

• Focus should be on need rather than maximum amount that can be funded.

• Cost of living is more. Maximum Award should be more as well.

• If ILF has money for 1000 disabled people then there needs to be a Maximum Award to make sure everyone gets a fair share.

• ILF is outcome based rather than hours based so we need to make sure that hours of support do not stop disabled people from being able to live independently.

• There needs to be some sort of maximum award or else ILF won’t work. It also needs to take into account level of needs for each person.

• There should be a review of the Maximum Awards over time and if it is needed it should be possible to raise the Maximum Award for people with the most complex needs.

• £600 seems more in line with the rising cost of care and support.

• ILF Maximum Award should not be any higher than the average SDS budget as ILF is about additional independent living outcomes.

• Focus should be on need rather than maximum award.

• It is enough to make a difference but may not meet everyone’s needs. Would mean less family support required. One size doesn’t fit all.

• Could there be two types of Maximum Award. One that people can access once for special equipment like a stair lift. And another that is paid weekly and helps with regular costs like PA support.

Age

In this document, Age means how old you need to be to get money from the Independent Living Fund.

When the fund was open to applications you needed to be between 16 years old and 64 years old.

Discussion Reponses

• Lower age limit should stay at 16 for re-opening and then look at this again each year to see if it can become wider.

• Difficult question when thinking about complex needs as is very difficult to get funding until children are 3 years old and Local Authority budgets often less than the person requires.

• Thought the age range would be 26 years old and upwards as ILF have an existing transition fund for 16-25.

• There are many funds available to younger age ranges such as the family fund and the education that will fund younger people to improve their quality of life.

• Should re-open at 16 years old and above look to open the fund up to younger people in the future if this is possible.

• No upper limit. 14 years have passed where the fund has been closed, if you have a maximum limit on the age range that creates a barrier for people who have missed their chance because they are over 64 now.

• Transition Fund (TF) is for different reasons and people can apply for both TF and ILF award.

• Understand that there needs to be some cut off but would be nice if there was unlimited money to include children.

• No upper age limit as needs don’t stop when people reach retirement.

• There should be no age limit.

Second Group Discussion

Award Management

Everyone who gets money from Independent Living Fund Scotland must have an Award Manager.

Award Managers can be:

• the person getting the funding
• someone who has some control to support the person – like a Financial Guardian, for example
• someone else – like a family member
• Social Work staff

Discussion Responses

• Carers who are Award Managers need support. Using an agency to do the payroll side of things is a good way to make things easier.

• ICMS can do Award Management and Payroll. GCIL provide a payroll service.

• Can be good to have an independent adviser. The way ILF do this it is great and there are other support organisations that can help with this.

• It is important to have someone managing the award that knows the person. The way it works now is good why change it.

• Centres for Inclusive Living can be a good place to get advice when people don’t know where to start.

• Some Local Authority teams have development workers to support people to become employers but this is not it all areas.

• Would be helpful to have Award Manager supporting each other. Network for Award Managers.

• Important to remember that family members would always be the most suitable people to take on Award Manager role.

• Choice and control over individual life is the most important thing.

Charging for ILF (Available Income Contribution)

This means an amount of money that a disabled person pays towards their support – on top of the money the Independent Living Fund pays.

At the moment it is £43 per week.

Discussion Reponses

• Local Authorities have different charges to ILF. Some people feel they are being charged twice.

• People have been waiting a long time for ILF to re-open. They should not face charges when it does.

• In some cases people can’t afford the charge. ILF should be able to waive it in these cases.

• It would be great if there were no charges.

• Think about value for money. You pay £43 and you receive £300 you’re getting a lot for the money. You’re still getting a better deal.

• Disabled people already living with additional disability related costs so should not have to pay a charge.

• Any charging that is in place should be the same with every Local Authority. Some don’t mind the idea of a charge as it is a way of valuing the support provided by ILF.

• As the fund grows and charge stops what would happen for the people who have paid the charge for years.

Capital Threshold

This means the amount of money someone has in things like:

• savings
• investments
• second houses
• land

At the moment the Independent Living Fund capital threshold is £32,750.

This means that if someone has or gets this amount of money, they cannot get Independent Living Fund money.

Discussion Responses

• Having a capital threshold is disability discrimination. As a non-disabled person if you get inheritance or have savings no-one takes that away from you.

• People may have some money in the bank but funds can be very quickly used up by a disabled person.

• If a person’s parent left them a house or money that would be included in the capital sum but that money won’t last forever. They should be allowed to have another assessment in the future.

• If ILF is about equality and fairness everyone should have access to support no matter what you have in the bank.

• Unfair for disabled people to be punished for having savings. A lot of disabled people have to save up money to purchase specialised equipment and this often brings you up to your capital.

• ILF are good at taking into account these costs and any disability related costs you’re saving up for will be taken out of the capital sum and set aside.

• Agreed that there should be some level of capital limit. Not sure what it should be. Better to have a high limit.

• There could be different levels. The more capital you have less your ILF Award is. This could get complicated to manage and monitor.

• There needs to be something in place but it could be more flexible than a fixed amount.

Third Group Discussion

Relationships with Local Authorities

At the moment both local councils and the Independent Living Fund give money together to disabled people.

Independent Living Fund aims to visit each disabled person once every few years to check everything is going well.

A social work staff member from the local council should go along too. And the person themselves should be asked what they think.

Discussion Responses

• Joint reviews should be a benefit to recipient not the other way around.

• Worry about Local Authority looking for ways to cut funding.

• It is different with different Local Authorities. We can do more to help make sure ILF and Social Work are working together for the best interests of the recipient.

• Social Work often don’t show up to review meetings. Not fair to the recipient.

• The more people involved to support and inform you the better choices can be made to support people to have choice and control.

• Would be better to have Local Authority taken out of the process and focus less on budget more in the person’s needs.

• ILF are saying we have all of this money to spend, use it to have choice and control.

• Local Authority are saying we have all of this money to save, we need to take it back.

• Should have recipient permission to invite Social Work to reviews.

• Can be beneficial to hold joint reviews as this can be a way to access Social Work involvement and support.

ILF and Statutory Funding (Additionality)

Independent Living Fund money was not meant to be the main funding for disabled people.

It should be topping up the amount that each local council agree to pay.

Discussion Responses

• Makes sense to have it the way it is. Social Work cover care needs. ILF covers social and independent living outcomes.

• Local Authority assess care needs and then ILF consider additional needs. This is a good thing.

• Keeping ILF separate from Social Work means that ILF can challenge the Local Authority and make sure statutory needs are being met.

• Worry that personal care needs in the community will be removed if ILF is in place.

Use of ILF Funding

The extra money that Independent Living Fund gives helps people to choose things that are important to them to help them live more independently.

Discussion Responses

• More opportunities to be creative with ILF funding and think about independent living outcomes not just care needs.

• ILF will give you advice over the phone if you’re not sure about using money in a certain way. If you have any problems phone them up.

• Never come across a scenario where the funding can’t be used flexibly or supported to think about how to use funds to meet the recipient’s needs.

• Must continue with the level of flexibility people have come to expect form ILF and be more creative with how we use funding.

• Holiday and respite as well as extra PA costs for travel can be a good use of funding.

• People with complex needs might buy specialist equipment or organise respite breaks.

• Pay for memberships of groups and clubs such as a football season ticket.

• Share examples of how recipients use money and introduce new recipient to people who already get ILF so they can learn from their experience.

• Should be possible to us the money for a one-time purchase like a power chair and also have weekly support for regular costs.

25 January 2024, via Zoom (aimed at those living and working in the Highlands and Islands)

First Group Discussion

Minimum Qualifying Amount (Threshold Sum)

The Threshold Sum means the amount of money that a disabled person must get from their local council to get Independent Living Fund money too.

Discussion Reponses

• Now it is £340 and the Feeley Report recommends £600. Somewhere in the middle of these two amounts would work.

• Making the limit too low would result in paying out smaller amounts and that might not make a big difference to people’s lives.

• Lots of people are waiting for an assessment and Social Work and overstretched so they will miss out if they don’t get it on time. If you increase the threshold it just creates a new barrier.

• Lower the threshold and you could help people who are already missing out.

• If the threshold is removed ILF could help people who are on long waiting lists for assessment without Social Work being involved.

• Gap between people who have support and those who don’t is just getting wider.

• We should have a ‘needs based’ approach because people may have complex needs but still have a small social care package because they get support from unpaid carers. They could still live a more independent life with ILF if they could apply.

• £600 is too much. Social Work are trying to cut budgets.

• Social Work department don’t have enough resource. It is very bad in Highland Council.

• The amount should be somewhere between £320 and £600.

• Ideally accessing the re-opening of the 2015.

• Getting an ILF Award should not be about what you receive from the local authority.

• The threshold sum that was used for the 2015 fund was out in place nearly ten years ago. No care costs more so this amount does not reflect the same level of need.

• If the amount is too low the fund will not have a positive effect on disabled people’s lives.

Maximum Award

The Maximum Award is the biggest amount of money the Independent Living Fund can give to someone each week.

Discussion Reponses

• It should maybe match the funding people get from the Local Authority.

• People in rural areas should be able to get more funding because everything cost more.

• Should be needs led and based on outcomes. If people in rural areas need to travel a lot to meet their outcomes this needs to be looked at.

• Maybe there should be a Maximum Award for each Local Authority Area. For example, the Maximum Award in Glasgow would be different to the Maximum Award in Inverness.

• Social Work will cover the basics. ILF is there to make a meaningful difference to a person’s life so that Maximum Award should be as high as possible.

• Agreement that there needs to be a Maximum so that more people can get support. Not sure how much it should be.

• It is important to every couple of years. Somone who does not need the Maximum amount now might need more in two years’ time.

Age

In this document, Age means how old you need to be to get money from the Independent Living Fund.

When the fund was open to applications you needed to be between 16 years old and 64 years old.

Discussion Reponses

• Upper of limit of 64 years does not make sense. People are living longer, and old people are already forgotten about.

• Disability doesn’t just stop at retirement age.

• Quite fair to have a lower limit of 16 years old. Children have access to different support and so do people over 65 years old.

• The upper limit does not take account of older people who have complex needs that might get worse with age.

• Should there be an upper limit? Yes, in line with retirement age being 67.

Second Group Discussion

Award Management

Everyone who gets money from Independent Living Fund Scotland must have an Award Manager.

Award Managers can be:

• the person getting the funding
• someone who has some control to support the person – like a Financial Guardian, for example
• someone else – like a family member
• Social Work staff

Discussion Responses

• It is right to have an Award Manager and this is usually a family member is the person cannot do this by themselves.

• Other organisations can give families support with this but some find it difficult going to different organisations for different parts of their support. It is confusing.

• Some family members don’t know that being an Award Manager makes you the employer. Help is needed to understand what this means as it is a lot to take on.

• Using an agency to help with things like payroll can help but there is an extra cost for this. People need all the information to make a decision.

• Assessors need to help family members understand the role.

• If people can manage their own awards, that’s great but it’s not possible for a lot of people.

• Being a parent a carer working and then having the responsibility of managing PAs and all the money is too much. It puts people off.

• If ILF could make it easier by managing an award that would be a huge help for families.

• There does need to be an award manager and current flexibility sounds great so that people can choose the solution that works for them.

• Maybe increase the flexibility to allow charities to help families with this role.

• People can struggle with money that has not been spent (pandemic), so guidance in how to properly use this would be helpful.

• ILF pass out the money and cannot be the employer as well but can provide support and advice.

Charging for ILF (Available Income Contribution)

This means an amount of money that a disabled person pays towards their support – on top of the money the Independent Living Fund pays.

At the moment it is £43 per week.

Discussion Reponses

• Better to have no charge. Work out what the amount is with the charge already taken off and just pay that to the person.

• No charge, people are charged enough for things as it is. Disabled people are far worse off than the general population.

• It is a small charge for what people are getting.

• Charging is confusion. Some people do not understand they are supposed to pay and why.

• If we take away the charge, it’s not fair to people who have ILF as they have been paying the charge for years. Needs to be fair.

• Having a little charge would keep the fund going.

• Maybe it should be a means tested amount that people pay.

• If people can’t afford the charge, they should not have to pay it.

• If Scotland is stopping charging for social care, why would ILF keep charging?

Capital Threshold

This means the amount of money someone has in things like:

• savings
• investments
• second houses
• land

At the moment the Independent Living Fund capital threshold is £32, 750.

This means that if someone has or gets this amount of money, they cannot get Independent Living Fund money.

Discussion Responses

• Threshold should be linked to local authority charge threshold.

• If a person is saving got adjustments to their home (stairlift) this money would not be counted as ‘capital’. They would be allowed to use it for that.

• People who are high above the threshold should not qualify.

• Disabled people should be allowed to save towards owning a house, or something like that. At the same time ILF only has so much money in the pot so we need some rules to decide how to use it.

• Needs to be a threshold. It should be as high as we can make it.

• £32,750 would run out very quickly for someone with complex needs who is employing their own staff.

• Lots of people in rural communities will inherit the family home. This should not count against them getting the funding as they are already very isolated.

• It’s fair in a sense but don’t know if £32,750 is the right amount.

Third Group Discussion

Relationships with Local Authorities

At the moment both local councils and the Independent Living Fund give money together to disabled people.

Independent Living Fund aims to visit each disabled person once every few years to check everything is going well.

A social work staff member from the local council should go along too. And the person themselves should be asked what they think.

Discussion Responses

• Continue as all three parties involved in the review and the ILF recipient at heart of it.

• Social Workers should be present at recipient reviews.

• Some recipients had not had a social work assessment for 10 years. Duty social workers attended ILF reviews but this does not work as they don’t know the person.

• Assessors and Social Worker working together is the best way to get the best outcomes for the person.

• Charities can also play an important part helping people get ready for reviews and maybe in the future to apply to ILF.

• Reviews can be difficult for recipients. Sometimes dates change if Social Work can’t come and this is stressful.

• The current model works, although it has been more difficult since the pandemic.

• More communication is needed between Social Work and ILF. Assessors can see where there are gaps and work to fill those gaps in support with an ILF Award.

• Not everyone has a social worker so they wouldn’t be able to apply. Social work support to apply would be helpful as well as support from other organisations.

• People in rural locations are at a disadvantage because Social Work teams don’t have enough resources. Need to think about extra support for these areas.

• There is fear that social work will try to reduce some of what they cover if they are made aware of what a recipient is getting through ILF Scotland.

• Having all three parties involved means everyone must play their part and we can see who is responsible for each part.

• ILF was created to support those with biggest levels of need. Sometimes people with big budgets are the people who have enough support. It’s the people who Social Work don’t know about that we need to focus on.

ILF and Statutory Funding (Additionality)

Independent Living Fund money was not meant to be the main funding for disabled people.

It should be topping up the amount that each local council agree to pay.

Discussion Responses

• Yes, agree is has additional but how do we make sure it stays this way.

• Should be additional and not cover personal care.

• Focus on people who are not having independent living outcomes met. Enable them to become more involved in communities and think of different ways to do this.

• Must be outcomes based. People need help and advice to know how to use the money.

• Worry about ILF becoming part of the day-to-day care package and not being used to try new things and make people happy.

• Local Authorities must fund basic care needs. ILF is for everything else. Outcome led.

Use of ILF Funding

The extra money that Independent Living Fund gives helps people to choose things that are important to them to help them live more independently.

Discussion Responses

• To be more involved and active in their local communities.

• Don’t tell people what they can and can’t do with money but share ideas and examples.

• Show examples of recipients and how they use their ILF Award.

• Give recipients choice and control and achieve outcomes.

• Do not limit choices.

• Work with Local Authority to understand needs.

• Do not to exclude anyone from applying.

• Should be able to spend money on special equipment. For example a motorised tricycle.

• ILF money can be used for things that are not funded by local authorities like a power pack for wheelchairs.

• Some local authorities don’t find transport so people will want to use money for this especially in rural areas.

• Use funds to pay for PA travel and go on holiday.

• Needs to be as flexible as possible.