Co-Production Event Discussion Summary - Online 11 January

11 January 2024, via Zoom

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

• Feels like a big responsibility to decide on a figure at this stage. The amount of £600 may have come from the Feeley report, but don’t think people should think of that as the figure to use.

• It is about getting the amount that gives a person enough to live independently. Independent living is a basic right and the total amount people get needs to allow that to happen.

• Maybe we should be thinking about re-opening with a plan to review the level people qualify for ILF at in the future. This may take some time to get right and re-open with a view to learning.

• We should think about people who don’t have support from Social Work and rely on unpaid carers. If the threshold sum is used to decide who gets ILF then these people would not be able to apply.
• Threshold sum means Social Work and ILF will know those most in need. There are big differences between different Local Authorities and the level of support people might have based on where they live.

• Should not be a fixed amount. Makes more sense to base this on a person’s needs.

• Current figure is unfair to older people. Very few older people will have this level of support from the Local Authority and that means they will not be able to get ILF.

• Really disappointing to have boundaries set.

• Has to be better than there is at the moment.

Maximum Award

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

Discussion Reponses

• Maximum Award has worked well in past. Makes the fund last longer and go further to help more people.  Not sure what the amount should be, but it might be good to talk about this again after re-opening and check the amount is right.

• Things change in people’s lives so it should be possible for the maximum award to change and be flexible.

• No there should not be a maximum award. Should be about individual needs.
• Maybe the Maximum Award should match the funding people get from the Local Authority.

• Could there be two levels of award? One that is linked to Self Directed Support and has a weekly maximum award and another that allows one off payments for things like special equipment that lets people live independently.

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

• Starting ILF at 16 is good. People might not go onto education after that and because of that would not have access to other funds.

• Should be open to people over 16 with no upper age limit. Lots of older people would benefit from ILF as they are isolated, not well cared for and living in poverty.

• Difficult to comment on people under 16. Depends on the independence of the person at that age. There may be some situations when people under 16 would benefit from support from ILF.

• Should be able to apply at any age, especially if it will allow a person to stay at home rather than go into a care home.

• No upper age limit.

• Do not include children’s services at this stage as they access support differently.

• Need to make sure we don’t forget about the older adults who have access to a Self Directed Support budget if over 65.

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

• There has to be an Award Manager in place as often the person is not able to manage funds themselves. This may mean Power of Attorney (POA) of Guardianship is needed, but it has to be there to provide security for the individual and for ILF.

• Good to support people to take that role on themselves or use independent organisations to support with this like Centres for Independent Living. This means the recipient knows and has some control over how their funds are managed.

• If Disabled People Organisations (DPO) can take on the role of Award Manager and employer this would mean the process lead could be more disabled people led.

• Older carers are worried about who can step into the Award Manager role when they can’t do it anymore. Will need other organisations to help in the future to make it possible for people to go on living as independently as possible.

• If ILF could manage all awards it would be better for recipients, carers and for everyone.

• Family members who are Award Managers need support and guidance on how to do this role properly.

• Payroll, advocacy and legal support are all things that voluntary organisations could help Award Managers with.

• Give the recipient of the fund the choice and control over managing the award.

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

• Would be better to run ILF without a charge. Some people are also charged by the Local Authority so it is confusing for people.

• Having a charge for ILF can create a barrier and some people do give up.

• If the Local Authority has done an assessment there should be no charge. Where no assessment has been done it seems fair.

• If there is a charge it should be means tested and people should only pay what they can.

• If the charge stays it could be taken off as a fee for running ILF before people get their award.

• A smaller award would be better than being given an amount only for some of it to be taken back as a charge.

• Start as you mean to go on and remove charge since the government plans to remove the charge by 2026.

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

• Very difficult to decide. For a person with complex needs £32,750 is not a lot of money as care costs will be high.

• People are being financially assessed by the Local Authority anyway. Would help if they were working to the same limit.

• It makes sense for this type of additional funding to have a Scotland-wide cap and it seems sensible. Great that they are able to allow people to save for their own adaptations.

• People should be allowed to save. Depends on what the amount is money they have in the bank is for.

• If a person receives money because they have received poor healthcare (medical negligence) they would be at a disadvantage.

• The amount alone should not be used to decide if a person gets an ILF award. Need to consider many more things in a person’s life.

• Some people think if you can afford to contribute towards care then this should happen at some level.

• People with money in the bank still require support and access to support.

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

• It can be a post code lottery with Social Work. Some people have more positive views on Social Work being involved.

• It is important for Social Work and ILF to be talking to each other. ILF have worked hard to build strong links with Social Work and ILF Assessors have experience of looking at independent living in a very person-centred way so it is important to have both involved.

• Social Work is for statutory care needs (personal care) and ILF is for everything else. Working together should mean the person has a good life.

• People worry about Social Work reducing funding if there is a single review with ILF and the Local Authority. ILF Assessors can help provide support at reviews to make sure statutory support does not reduce.

• If there is no change in the person’s life then every 2 years is a good amount of time between reviews with ILF and Social Work.

• In favour of continuing with a joint approach, but it is important that the people involved in the review know the person. If it is a Duty Social Worker this is not the case.

• There seems to be less involvement from Social Work, at the expense of recipients. ILF can help to bridge the gap.

• There should be a separate department within Social Work who look after ILF assessments and reviews.

• There can be a lot of stress and anxiety caused by long delays in assessments and reviews.

• Would be better to have a short snappy online process as quick as possible.

• Should be one body and one review with no local authority involvement.

• If ILF are happy with the way the funding is being used, then this should be enough for Social Work to accept.

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

• ILF should be additional to care packages. It is about giving that person a change to live life to the full and have choices. Additional support has to come for ILF as the Local Authority will only ever provide the basics.

• More help to understand what is statutory and what it additional would be good for recipients and family members to know before the assessment takes place.

• ILF should offer anything that is extra to what is on a care plan in a person-centred way.

• Social Work could be encouraging the person to apply to ILF to fund the things Social Work cannot fund.

• This should be about individual outcomes and if ILF could lead a person-centred approach that would be a great thing for recipients.

• Funding should enable a person to enjoy their life and pay for extra Personal Assistant (PA) support to do social activities.

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

• Using ILF funds to provide things that enhance the persons goals, such as social activities and travel.

• Funding from Social Work can be like providing the glass but not the drink. For example, you want to go horse riding and you have enough money to book a horse riding lesson but can’t afford to pay for a PA to support you with getting to the lesson.

• Move away from it being based on ‘hours of support’ towards goals in favour of ILF being used for whatever achieves the person’s goals and allow people to be creative and be happy.

• People in rural communities will need to use more of their ILF award on travel. This should be considered in the assessment.

• Flexibility for everyone to request to use money how they wish socially.

• Have open and honest dialogue with ILF Scotland on use of money.

• More guidance on what the money can and cannot be used for.