The Government has announced a significant increase in funding for social care in England. This is a once in a generation opportunity to fix the social care system and something we, autistic people and families have long been calling for. 

It could start to make a real difference to the lives of people who need care, but who struggle to find local support or sometimes face catastrophic care costs. This is vital. Social care can be the difference between being able to leave the house or not; to wash dress and eat or not; work or not.

But we’re really worried that we will need to wait three years to see all the funding for social care in place.

What the Government announced

There will be a rise in National Insurance to provide the NHS and social care with more funding. The National Insurance rate will rise by 1.25% from April 2022 across the UK, which the Government says will raise £36 billion over the next three years. National Insurance is paid by both employees earning over just under £10,000 a year and their employers.

The money raised through the National Insurance rise will solely go to the NHS for the first three years. The Government has separately committed to provide £5.4 billion to social care during this period. From April 2023, the National Insurance rise will then become a separate tax on people’s income, called the Health and Social Care Levy. People of state pension age, who do not normally pay National Insurance, will pay the levy. 

The money raised will then start to go into the social care system from April 2023. It’s important to remember that social care in England is not like the NHS, which is free at the point of need. Instead, people are assessed to make sure their needs are high enough and then whether they have the assets, such as lifetime savings or a house, to pay for their care.

Wider plans for reform of the social care system, not just funding, are expected to be announced by the Government soon. The Government will be working with organisations and stakeholders over the coming months on a White Paper for Adult Social Care that sets out its plans.

What about before 2023?

We have been campaigning to end the social care funding crisis for years. It is urgent and we are concerned that it could take three years for the social care system to get the funding it needs. 

The Government says that it will provide an extra £5.4 billion over the next six months for the NHS to respond to the pandemic. £1 billion of this will be used to help to clear the long waiting list for non-emergency appointments and surgeries. The Government will also provide £5.4 billion to social care over the next three years.

How will the new social care rules work?

The rules around who is charged for social care are complicated. At the moment, if someone needs care, they will need to pay for all of it themselves if their assets total more than £23,250 (and pay some of it if they have £14,250). Many autistic people who get social care support don’t have these assets and so don’t pay for their care. But some other autistic people who do have assets struggle. They might have to rely on friends or family, or even go without care, as the cost can be high. 

The new rules will be different:  

• If someone has assets over £100,000 they will have to pay for all of their care.
• Anyone with assets of between £20,000 and £100,000 will be eligible for some support but will need to contribute some of the cost. 
• People with less than £20,000 in assets will have their care fully paid for. This will cover many autistic people who get social care.
• There will also be a new ‘cap,’ on lifetime care costs of £86,000.

This means that nobody will pay more than this for their care over their lifetime. If someone needs care, their local authority will assess their needs and whether they should receive financial support. If a person needs to live in their own home, it will be excluded from the assessment of their assets. 

What we think

This announcement is very complex and there will be more detail to come. Autistic people and their families will need more information and we will try and get that from the Government in the coming weeks and months. If you currently get social care support, this should not change. If you are worried, you can contact your council social care team. 

These changes could start to make a real difference, but we’re worried that it will take three years for the funding to start going into social care, with £5.4 billion provided in the meantime. It’s likely this won’t be enough for the next three years, as many autistic people and other people who need care are already missing out. The coronavirus pandemic has only made this worse, with our Left Stranded report finding that one in five family members had to reduce work due to caring responsibilities because organised care wasn’t available. 

We’re also worried that these new plans don’t say anything about widening eligibility to make care available to more people, which will include many working age disabled people. Many autistic people are able to live independent lives in their own home but would benefit from local community social care services, like respite or support groups. 

It’s also important that enough funding is provided to local authorities as soon as possible to make sure they can continue to provide community services, as well as fund people’s care home places. The Chancellor is due to deliver a Spending Review in late October, which sets out the Government’s spending for the next few years. We’ll be calling on the Chancellor to provide sufficient funding in the meantime, before October 2023, and to properly fund the autism strategy beyond its first year.

Scotland, Wales and Northern Ireland

The levy will be focused on England, but Scotland, Wales and Northern Ireland will receive £2.2bn to spend on their services. The nations’ governments will decide how to spend this.  

Our comment:

Tim Nicholls, Head of Policy at the National Autistic Society said: "This is a significant increase in funding for social care, which we, autistic people and families have long been calling for. It’s a once-in-a-generation opportunity to fix the system, but we’re really worried that we will need to wait three years to see all the funding for social care in place. The system is in crisis now. 

"Our research suggests that two in three autistic adults don’t get the support they need, for instance to do things like wash, manage money or get out of the house. We continue to hear awful stories of people becoming isolated, developing mental health problems and finding themselves in crisis. The pandemic has only made things worse.  

"We urge the Chancellor to invest what's needed now in social care, provide local councils with the funding they need and properly fund the autism strategy beyond the next year. Autistic people can’t wait any longer.”

Further information

• Read the Government’s plan for health and social care, Build Back Better, in full
• Read Left Stranded, our report into the impact of coronavirus on autistic people
• Read more about the Government’s autism strategy, which was published earlier this year
• For confidential support and advice visit the Help and Support section of our website
• To find out more about local and national services for autistic people and their families, visit our Autism Services Directory.