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.
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.
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.
Attendees were very supportive of having no upper age limit. They felt that the lower age limit should remain at 16 years.
The majority of attendees thought that the current ILF Scotland system regarding award managers works well and should continue.
The majority opinion was that the fund should re-open without a recipient contribution or charge.
Attendees felt that there should be no capital threshold applied to the re-opened fund.
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.
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.
Almost all attendees thought that the existing ILF Scotland policy around use of funding should remain in place.
Participants suggested that funding should be priorities as follows:
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
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.
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.
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.
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.
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.
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.
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.
The following provides a list of the questions and a collective summary of discussions from across the entire series of events.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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%
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.
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?
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?
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?
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:
Question
Should awards be managed in a re-opened fund in the same way as they are currently?
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
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?
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.
Should there continue to be joint ILF and Social work reviews every few years for a re-opened ILF?
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?
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:
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?
