In England there are 152,000 people with a learning disability who get support from adult social care. This care is additional help that many people need to live the life they want. 

This can be anything from help in the home, personal care, and support to go out in the community .   

Some people might need support for just a few hours a week. While others might need support every day throughout their lives.   

This isn’t always the case. The local authority will look at whether someone is able to afford to pay towards their social care. This is called 'means testing'.  

If the person needing care receives benefits, local authorities can take money from these benefits to contribute towards the cost of their care. 

Also, if they have assets or savings over £14,250 then they may also have to pay some extra towards their social care. This lower threshold was set to rise to £20,000, but the Government recently announced a 2 year delay to its social care reforms which means that the levels remain as they were. Income from employment is excluded from means testing calculations 

To make sure people are left with money to live on after they have paid towards their care, there is something called the Minimum Income Guarantee. This is set by the Government. 

The Minimum Income Guarantee is the smallest amount of money that someone must be left with after the local authority has taken some of their income to pay for their social care  

How much someone is left with depends on their age and whether they are single or in a couple. The Government sets out a minimum amount that councils need to leave care users with – but shockingly, this is just £74 a week for people under 25. Local authorities can decide to leave people with more. 

The system is also deeply unfair to younger people as the amount you are allowed to keep increases as you get older. A person over 65 is allowed to keep more than twice as much, £194 a week. It cannot be right that age is being used as an arbitrary means of deciding how much money a person is allowed to keep especially when many working age adults have lifelong needs for social care and are therefore expected to pay towards it for a far longer period. 

Why are people allowed to keep so little of their income? 

The Minimum Income Guarantee levels were set back in 2014 and remained the same until last year, when they rose by only 3.1%. This means it has not kept pace with the increases in the cost of living. In fact, we have estimated that, if the Minimum Income Guarantee had increased in line with inflation at the time, people would be up to £45 per week better off than they currently are under the existing MIG levels. 

When the local authority works out how much money someone should pay towards their social care, they must also make sure that people can keep some extra money to pay for the things they need because they’re disabled. This is called Disability Related Expenditure.  

But some disabled people are only allowed to keep a small amount of money for disability related expenditure, which doesn’t cover the cost of everything they need. Often, they will set a maximum amount that people can keep for someone’s extra spend for their disability – as low as £5 per week – and will only allow more than this is special circumstances. This is deeply unfair. 

Yet research shows that disabled people often have to pay more for certain things because of their disability, such as wheelchairs, specialist equipment or if they need the heating on more to keep warm[1]. On average, disabled people pay an extra £583 a month to live the same quality of life as a non-disabled person. 

[1] [1] Scope, 2019 (Disability Price Tag report) 

The Government sets the minimum amount to leave people with, but councils can make their own decisions about how much to charge people on benefits for their care – or whether the charge them at all. 

It’s a postcode lottery that leaves disabled people at the mercy of their council’s finances . Some councils do not need the extra money from social care charging, or  they have prioritised adult social care over spending in other areas. 

It’s a really unfair system – but you can help us change it. 

Last year, the Government announced that it would increase benefits in line with inflation and, as a result, they have risen, or are due to rise, by 10.1% from April this year. We are asking for a similar rise so that: 

1. People receiving benefits and social care can keep the full amount of their benefits increase 
2. The amount that people are left to live on after they have been charged for their care reflects the current cost of living 

The 10.1% increase, if applied to social care users aged 18-64, would cost Local Authorities around £50m. 

That’s our ultimate goal – we want to help Government build a more fair and sustainable way of funding social care, but that’s a long-term project that successive Governments have failed to fix. 

For now, Government are drawing up their next budget announcement for 15 March so we want to bring this injustice to their attention and make sure that they protect people with a learning disability on the lowest incomes at a time when costs are rising rapidly. 

If you have any concerns about the wellbeing of your loved one, please contact Mencap’s Learning Disability Helpline. Our trained advisers can offer support and advice, or signpost to appropriate services who can help. 

As every individual case will be different, we want to make sure any advice is relevant to your case. You can visit our website which has lots of information and resources: https://www.mencap.org.uk/contact/contact_mencap_direct, or contact our helpline on helpline@mencap.org.uk. You can also call 0808 808 1111 (10am to 3pm, Monday to Friday). 

You may also want to read our Meeting the Challenge guide around poor care and concerns about care practices: https://www.mencap.org.uk/sites/default/files/2016-08/Meeting%20The%20Challenge%20guide%205.pdf 

If you or someone else is in crisis, but you don’t think you need the police or an ambulance: Contact a G.P. (doctor) – Search for a GP Contact an out of hours service, by calling 111 or using this link to search for services Use this NHS page to search for urgent mental health help  

You can speak to the Samaritans - https://www.samaritans.org/ - they are available 24 hours a day for confidential , non-judgmental support. Call them on 116 123 or email: jo@samaritans.org