Co-Production Event Discussion Summary - Glasgow

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.