How do you talk about COVID-19 to people with intellectual disabilities?

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Coronavirus is changing people’s lives dramatically. People can no longer take part in activities outside the house, meet with friends, go to work or clubs or anything else that involves groups of people. People can no longer visit elderly relatives, and people’s families can no longer visit. Suddenly, the holiday someone you support had been looking forward to is cancelled.

We often think about “bad news” in relation to serious illness and death, but really, it could be anything that makes your future look less bright than you had thought.

How bad news is experienced, is affected by someone’s concept of future, their ability for abstract thinking, and the things that they had looked forward to. People who have difficulty coping with change may experience any kind of changes to their routine (even seemingly minor ones) as “bad news”.

This makes the coronavirus very bad news indeed.

Coronavirus is particularly difficult for people with intellectual disabilities, many of whom are particularly reliant on routines, on familiar activities, on seeing their families and friends. How can you support people to understand what is happening and to cope with the sudden changes in their lives?

Here are five hints and tips.

 

1. Talk about the Coronavirus!

This is important. The coronavirus is all over the news and everybody is talking about it. Nobody should be excluded from these conversations. How you do this, and how much you explain about what coronavirus is, depends on how the person usually communicates and understands things. There are easy-read resources available that may help you find simple words, and help you explain what it is we all have to do now (regular hand washing, social distancing etc). But for some people, this information may be too complicated (especially for those who don’t understand words or pictures), or too overwhelming or frightening.

You can keep it fairly simple:

Coronavirus is making lots of people sick. We have to stop people catching it from each other. That’s why we are not allowed to go to work/see mum/go on holiday. Or: That’s why we have to wear a mask.

The important thing is to answer any questions openly, honestly, and factually. You can check what the person has understood, by asking them to explain it back to you.

Stick to statements that you know are true. Never pretend that you know something when you don’t. It is okay not to have all the answers – nobody does, especially not about coronavirus! However, if the question is important (as most questions are), see if there is anyone else who could answer it: “Shall we ask the manager/ look it up on the internet?”

 

2. Share the emotions

You do not need to make things better. Don’t say “Never mind, we can go on holiday next year”. Cheerful reassurance can be very confusing, and may stop the person showing you their true feelings or telling you what is worrying them. It is OK (indeed it can be very helpful) to talk together about how upsetting this is, and how angry it makes you all feel.

The people we support can be very upfront with their emotions. Distress, worry, fear, anger, excitement, and happiness can all surface very quickly, triggered by something seemingly minor. Some people cry easily and readily. It is important to allow it. Remember it is not you who has caused the anger or the tears – it’s the Coronavirus! By allowing the expression of emotions, you are helping people cope with them.

 

3. What is the “bad news” part of the Coronavirus?

It is helpful to consider how, exactly, the coronavirus impacts on the life of the person you support. What is the worst of it, for this person? Is it not being able to visit mom, or not being able to go to the café, or being supported by someone you don’t know because your regular support workers have all gone off sick? Talk about that.

Even if someone really cannot understand what is happening, they will still experience the impact of coronavirus. For people who understand the world through experience rather than through words, it may be that your support has to be around particular changes of routine. Rather than explain why you now all have to wash your hands more often, you might focus on helping the person grasp a new hand-washing routine (perhaps 20 seconds is as long as their favorite song). Perhaps you can’t explain why they can’t visit mum, but you can help them see mum on Skype or Zoom. Which brings us to…

 

4. Find ways of coping with the changes

We all have to find new ways of doing things. Your managers are probably working hard to make sure that you can manage the changes in your work. Your task is to help the person you support find new ways of managing their daily life. People on the autistic spectrum, in particular, will find it helpful to have a clear new script.

For example: “We can’t have tea at your mum’s house on Saturday, but instead, we will make a cup of tea in your apartment and she will make a cup of tea in her house. And then we will call her on Skype so we can see her and talk to her.”

Or: “We are going to write down of all the things you do in the week, and if we can’t do them, we’ll write down what you will do instead. And we will pin it up in the kitchen so that if I can’t come in, and a new support worker comes, they know about it.”

 

5. Find ways of sharing with colleagues

Why not organize a regular video meeting with your colleagues, and talk about the things you find hard? Working as a team is so important.

We just have to find new ways of doing it.

By Irene Tuffrey-Wijne

 

About Irene:

Irene is a professor in intellectual disability and palliative care and works at St Georges and Kingston University in London. Irene has conducted research into end of life care for people with intellectual disabilities and specifically how to break bad news and how to talk to people about difficult changes in their lives.

 

More about Irene’s module:

Breaking Bad News: Nobody likes to break bad news. We worry about how to do it, how someone will respond, and how we will cope with their response. It may seem easiest not to break the news, or to get someone else to do it. Many people even try to pretend that the bad news event hasn’t happened. This module will guide and support you in the process of helping someone to understand bad news.

Email hello@openfuturelearning.org to schedule a demo of the Open Future resource and then receive your first month free – no contract of use.

Learn more about all of our modules here.

 

 

Is COVID-19 an Opportunity?

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As every human service organization on the planet will be in, or is approaching, its own “state of emergency” here are some words to consider.

This is not medical advice. There are plenty sources of advice from Governments for dealing with the health and economic implications of the pandemic. Go there or ask your employer if you need advice.

Instead the six points below seek to connect us to the experience of people with intellectual disabilities in a pandemic.

1. Promote reassurance, not fear or anger.
Many workers will be scared, as will the people we support. Fear is more infectious than COVID 19. Frightened people need reassurance. It’s hard to give to people supported when we can’t dig deep and find the strength to reassure ourselves and our families. So, build the future you want to be part of.

2. Choose inter-dependency, allow and enable people to “give”.
A lifetime of dependency leads to dependency. Perhaps it’s time to think about inter-dependency and work out how people we support can “support” the people who support them. That would be a great outcome from the pandemic. Power relationships finally equalized. All that work we’ve done on “gifts and talents” should support us to work out how.

3. Choose to see strategies, not behaviors.
Frightened people express themselves more emphatically. When routines that people rely on to understand their world begin to disassemble (they surely will as services close and shift from individualized support to basic cover and risk management) some are going to express their fear emphatically, potentially to workers who don’t know them like regular staff or family. Let’s choose to see “confused, scared and frightened” as strategies people use to cope, NOT “behaviors”. Let’s “Normalize the worry” and rewrite people’s stories.

4. Choose honesty.
People who find things difficult to understand need stuff explaining in simple terms. Nothing new there. Adults need to be treated like adults and not cosseted to ease our working life. The rule of thumb is “tell it like it is, simply, and then help people to work things out in a way that makes sense to them”.

5. Choose relationships, they matter.
We’ve talked forever about the importance of continuity in human services without really agreeing what we mean. For some it means an “activity timetable” and for others “everyone saying the same thing”. In unprecedented times continuity fundamentally means “people who know me and relationships I can trust”. If everything changes let’s make “relationships” the bottom line. “Relationships I can trust”. Keep them intact. If you can’t be there in person you can still get to someone by Skype, Facetime or a similar platform. You can still offer connection when self-isolated. You can still support your colleague who doesn’t know someone as well as you do.

6. Build connection.
Human services support some lonely people. Some have no-one in their life who isn’t paid. Brilliant support services have worked hard to build community connections for people many of which, like clubs and groups, will now be suspending activity. Maybe it’s time to reach beyond the activity to secure individual “connections”. It’s what we always meant to do, but the current crisis allows us to be blunt and “ask” for help and connection. Get brave. Ask people in your community to help!

 

Human services will go one of two ways. Some will hold on to the humanity of our work, preserve the intimacy of relationships and help workers and the people supported to hold on to those. Others will suffocate under changing rules, guidance and procedures. There’s more than one kind of “health” for us to maintain. Rules place emphasis on physical health, for good reasons, but mental health matters too. Choose physical and mental well being.

With the right approach it’s just possible that a pandemic could release people from old stories. Extraordinary circumstances offer extraordinary opportunities. Let’s be brave, focus on that possibility and use crisis as leverage we have always needed to build a future that we didn’t manage to out of the ordinary.

 

By Judith North

 

Judith has worked in social care since 1986 and now runs Orenda. Orenda provides training and consultancy focused on improving the lives of people who use and work in human services organizations. Judith is featured in and helped to write ‘Autism’ and ‘Autism and Sensory Processing’ for Open Future. More about these modules:

 

Autism: This module combines a straightforward introduction to autism with a broad range of practical strategies and approaches. The short films within the module balance the personal perspectives of people who have autism with the opinions and experiences of a number of leading professionals.

Autism and Sensory Processing: This module expands on the learning provided in our module “Autism.” Please complete that module first. Understanding and gaining insight into your processing system takes time and effort. Understanding someone else’s requires really careful observation, imagination, and empathy. In this module you will learn how your processing works and in turn we will teach you how to better understand and assist the processing realities of the people you support.

Email hello@openfuturelearning.org to schedule a demo of the Open Future resource and then receive your first month free – no contract of use.

Learn more about all of our modules here.

 

Meet Victor

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People with intellectual disabilities are three to four times more likely to experience mental illness. Victor wants to end the stigma once and for all:

 

 

Our new module ‘Mental Health’ captures the experiences and perspectives of leading thinkers to offer a comprehensive insight into mental health.

 

 

YOUR STAFF WILL LEARN HOW TO:

– understand mental health.

– support a mental health difficulty.

– help people cope with difficult situations and emotions.

– protect and promote mental health.

 

DID YOU KNOW THAT YOU CAN USE OPEN FUTURE …

– with groups of staff.

– on your phone.

– with the people you support.

 

Schedule a demo and then you can get your first month free! No contract. Email for more information: hello@openfuturelearning.org

 

Learn more about all of our modules here.