Co-Production Event Discussion Summary - Online 25 January

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.