This December we are telling the Government to make its new guidance on visits for people in care homes autism-friendly. At the moment, the rules in England mean people have to isolate when they return to their care home. Only working-age disabled people are being asked to pay for their Christmas with 14 days’ confinement, no matter how careful they’ve been. This will be impossible for some autistic people who need routines and lots of support to keep safe. It could unfairly prevent thousands of autistic people from spending Christmas with their friends and family.

In this blog, Tim Nicholls, our Head of Policy and Public Affairs, explains our concerns, including how it could affect his own family. 

It’s been nine long months since coronavirus took hold in the UK. Since then, autistic people’s lives - as well as their families’ - have changed completely. Daily routines that people rely on to stay safe and well have been broken. The pace of change and near-constant uncertainty has been incredibly tough for many autistic people and triggered huge anxiety.  

It’s been particularly hard for autistic adults in residential care, who went months without being able to see their families at all during the UK-wide lockdown in spring, and beyond. With Christmas only a couple of weeks away, many families are telling us they’re still unsure if they’ll be able to spend it with their autistic relative. It’s exactly the dilemma my family faces too. 

This is because of the strict new rules in England on visiting family and friends for people who live in a care home (often called “visits out of a care home”). It’s absolutely right that any rules protect people who are in care homes from coronavirus. We’ve seen what can happen when coronavirus gets into homes, especially those for people who are clinically vulnerable. Safety has to be the top priority. But the rules must also show some understanding about what is and isn’t possible for autistic people. And remember, being autistic doesn’t mean that you are clinically vulnerable to coronavirus, and care homes aren’t just for older people. 

What the new care home rules say

The new rules say that, for autistic adults under the age of 65, visits out of care homes can happen - including for Christmas. But, understandably, only if you and the whole household you’re visiting have tested negative for coronavirus.

Problems with the guidance: isolation period and the one household rule

The problems start when you go back to the care home, as the rules specifically state you will need to isolate for 14 days - whether or not you or anyone else in the household you’ve visited has symptoms. Isolating for so long could be completely overwhelming and therefore impossible for some autistic people. It wouldn’t just mean having your daily routine taken away, which could trigger intense anxiety, you’d also be confined to your room, unable to exercise or go outside. Remember, this will have to happen whether you or anyone you’ve visited has symptoms, or has been told they should isolate, and even if you have tested negative.

The other troubling part of the guidance applies specifically to Christmas. If you’re visiting someone out of a care home, you will only be able to see one household, while everyone else is able to form a bubble with up to three households. Again, this is a rule that could be really important to keep some people safe, as it reduces the number of people they’re exposed to. But for others, it will make a visit impossible. For example, some autistic adults in care homes need support from two or three people all the time and their parents may usually rely on other brothers, sisters or family friends to help out during visits. Without this support, their autistic relative may not be able to come home for Christmas –  possibly the first time they haven’t been able to do this. 

So while this guidance rightly aims to protect people’s physical health, it doesn’t reflect what is possible for autistic people and their families. Why can’t there be some flexibility to reflect this, like introducing testing to avoid the two-week isolation period?

It must be a tailored approach

Buried half way through the guidance, it says, “In particular, the [council] should not recommend an approach across the whole of the local authority area that does not take account of the different circumstances in individual homes.” 

But we’ve already heard from families whose councils have set blanket policies, ignoring the Government recommending a tailored approach. I’ve seen at least one letter addressed to “all families of people in care homes”. What is that if it isn’t a blanket approach?

Individual care homes have a really important role, using guidance from the council, to decide what the risks are. For example, if everyone in the care home is physically healthy, would re-testing everyone when they get back to the care home reduce the risk in that home so that isolation could be avoided? 

But this new guidance has confused things by seeming to set out a set of minimum requirements that just won’t work for autistic people, meaning they can’t visit their families.

Government must act, and fast

Everyone’s winter and everyone’s festive season looks different this year. We can’t go where we want, for as long as we want, with the people we want. But these restrictions on people in care homes are much, much greater. I can’t bear the thought of this being the price of my brother’s Christmas. If he visits, when he goes back to his care home, he will need his routine and the ability to see and be with the people who support him every other day of the year. 

Families like mine are depending on thousands of the right decisions being made about their autistic family member as an individual. But that’s not happening. The Government must act now. It must:

• make sure that every council and every social care provider knows what a good individual assessment of risk looks like
• let every council and care provider know how risks could be reduced, with more testing and social distancing – and make a decision based on each individual’s needs 
• make it clear that councils and care providers should talk to, and work with, families.

The Government must not stand by while autistic people in care homes are left stranded, again.   

Further information

• Supported living: Many families with relatives who live in Supported Living will have similar questions – and unfortunately we still haven’t had guidance about what limits there might be on visits this winter. We will continue calling for this to be published as soon as possible and will update our coronavirus information when it’s available. 
• UK nations: Each UK nation has its own rules on social care. If you are worried about how to arrange a safe visit home this Christmas, please talk to the care home. Find out more information about the rules and restrictions in Northern Ireland, Scotland and Wales on our website.