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An important message for disability support workers.

We know that supporting people with developmental disabilities can bring joy and meaning. But our work also often results in stress, burnout, and high levels of turnover. And that’s before the onslaught of COVID-19, the novel coronavirus.

 

Enjoy this message of encouragement from Peter Leidy:

 

 

Here are some thoughts on what we can do to take care of ourselves and others during this unexpected, uncertain, and challenging time.

 

You, and people who count on you, need you to take care of yourself as best as possible, when you are on as well as off of work. In a minute, we’ll get to a few ways you can do this – and engage others around you in your “self-care” during these difficult times.

 

But first, consider this. There’s a reason airline passengers are instructed that if the oxygen masks drop, adjust your own mask before assisting others. It’s not to be selfish; you can’t be your best for someone else if you’re not okay yourself.

 

In this film David Pitonyak asks, “Are you someone who helps people to get to dry ground or are you destined to push them further under water?”

 

 

This bears repeating, but I’ll phrase it differently. You can’t truly support another person well if your own needs are not being met. A key question here is: How are your needs being met?

 

In my experience, both personally and professionally, a person’s needs are met not just by what the person does for their own care, but also how others contribute to that person’s wellbeing. I do what I can to take care of myself, but I am also blessed with others in my life who help meet my needs. We take care of me.

 

People in support roles often feel isolated, on our own. If I don’t do this, no one will. This is totally on my shoulders, at least until the end of my shift. We need to support each other: ask what we can do to help out, check in, be present, be responsive. Family members, managers, support workers, teammates: We all act together for good support.

 

Okay, now back to some ways you can take care of yourself – not just for your own physical and emotional health, but for the sake of those you are supporting. Here are some ideas which may bring light to your support relationship, to you when you are alone – or both:

 

  • exercising
  • noticing beauty in nature
  • mindful breathing, even for a few minutes, focusing on the inhale and exhale
  • yoga and/or meditation (lots on YouTube and Zoom these days)
  • calling someone who’s currently socially isolated
  • offering to help a neighbor
  • taking a 15-minute walk in the morning (or any time)
  • writing positive messages with sidewalk chalk
  • offering something you have that others may need

 

… just to name a few.

 

When I’m with groups in workshops or training sessions (which I’m taking a break from now, except virtually!) I might ask people to bring to mind something or someone they’re grateful for.

 

How about trying this right now? Go on, I’ll wait for you. Honestly I’m not going anywhere! What is something or someone you are grateful for?

Often, it turns out to be a person. If it was for you, I ask that you tell that person – now! Call or text and let them know THEY popped to mind as someone you are grateful for. Why? Because being mindful of our gratitude improves our own wellbeing, and sharing it improves the other person’s.

 

If you didn’t try that right now, have a go later or when you are next with someone you support. Who or what are you thankful to have in your life?

 

University of Wisconsin epidemiologist Malia Jones offers some important insights on our current global crisis (interview, Capital Times, 3/18/20.) She says, “Public health by nature is a community project.” We have to cooperate, listen to each other, help each other, ask for help from others. Sound familiar? This is our work.

 

Good hygiene, safe practices, protecting vulnerable people: doing what we can to stop the spread of the COVID-19 virus. All of this is so important.

 

But let’s not ignore what else is needed as much now as ever: Listening, self-care, practicing gratitude, cooperation, helping each other, and seeing this crisis as an opportunity to build community.

 

By Peter Leidy

 

What is everywhere you went Peter Leidy went with you?

 

 

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.

 

 

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Can we go out today?

A disability support worker shared these words with me and it is one of the most beautiful, insightful and compelling pieces I have ever read.

Ben

Founder | Open Future Learning

 

Each morning since the pandemic began, I leave my home and drive down the empty highway to the location where I work. I enter the home, sanitize my hands, and greet the five men who live there. Each morning, their expressions and vocalizations are a little more anxious and a little more intense than when I left them previous afternoon. Each morning, I answer their questions: Can we go out today? No, I’m sorry, we can’t. When can we go out again? We just have to take it one day at a time. Why can’t we? Because we could get sick. Is it just us? No. It’s the entire human race. Each morning they respond with a little more resignation, and a little more despair. We settle in for another day of shelter-in-place.

 

We follow the rules and stay home. We forgo our regular routines and entertainment. The bowling trips, the painting classes, and karaoke at the day program are cancelled. Dwain, whose mental health is closely linked to a stable schedule and his twice-daily bus rides to the local Wal-Mart, is finding the days particularly difficult. When it feels like the walls are beginning to close in, we pile into the van for long drives through the silent countryside of early spring. Gas is cheap. Until this week, we risked the Tim Horton’s drive-through and cradle gently our totemic double-doubles, sipping this rare elixir of normalcy. Together, we watch the live news broadcasts, Trudeau on his porch.

 

At first I was reluctant to have the news on, worried it might prompt anxiety – for all of us. But when I’d ask what they wanted to watch, their answer was always “the news”. They appreciate keeping up with the latest updates. While it might seem kinder to keep people “in the dark,” respecting choice and self-determination is all the more crucial in times when our options seem so limited. This is their home, not mine. They are adults, so it does not make sense to simply follow the protocols I keep with my children. Similarly, dignity demands that considerate honesty must come before my own desire for a sheltered and calm working environment. We are, after all, truly all in this together.

 

As we hear announcers share the rising numbers, we try not to think about what an outbreak would mean in this small split-level residence, home to five men of advancing age and already-compromised immunity. We wash our hands again. We stay home some more. We stop risking the drive-through, make our coffee at home, drink it together while we watch the news.

 

I am afraid. I am afraid for them, but also for me, and for my family. But they are not. In many ways, COVID-19 has not disrupted their lives to the extent it has mine. They are now old men, tough and wise, who came of age in the crucible of the institutions. They have known hardship I can’t imagine. They have friends in the unmarked grave behind Huronia, and do not fear death as I do. They have lost more than I can understand and have lived through much grief – along with joy and celebration. Though not of their own choosing, social isolation is often not a new experience for people with intellectual and developmental disabilities. These men, despite their depths of hard-won wisdom and delightful companionship, are well-accustomed to strangers keeping their distance in public places. The conditions we ironically bemoan on social media are barely distinguishable from how they have spent most of the days of their lives. They are old pros at quarantine, and they are teaching me.

 

My shift ends. I gratefully wash my hands and guiltily break the quarantine, to drive through a numbed town that has lost its freedom. The parks are empty, and the bars and the movie theatres are closed. For the first time, the rest of are learning the taste of institutional living. It is our liberties that have been curtailed, our habits that are being judged, our behaviour that must conform now to programs designed by others. All homes are experiencing increased legislation, restricted freedoms, and pressure to act and behave in certain ways. Throughout history, these demands we now face have too-often been the experience of people with intellectual and developmental disabilities. I hope that I – that we – can bear these conditions with half the grace and humour that these men have for so many years. Now we do so to protect vulnerable people from the coronavirus. In the past, vulnerable people have often been asked to act and behave in certain ways only to protect the status quo.

 

Back at my own home, I find myself without so many of the social connections that add meaning and fulfillment to my life. I taste the marginalization that is part of the daily experience of so many people. We have so much to learn from one another. I am just now learning what many others have been training for their whole life: that when our work is taken from us, when our hands fall still, and when our distractions fail us, we are left with what matters most. We come face-to-face with ourselves, and those who are closest to us. So let’s be good to one another. Let’s be kind and patient. Let’s have grace for lack of social skills, for poorly chosen words, and for tempers lost. Let’s share the television remote and swear at missing puzzle pieces together. Let’s care for one another and be grateful that this isolation is not forever. It is an act of love for a broken world. And when these quarantines end and we once again find it easy to take our casual gatherings for granted, let’s remember Dwain and others for whom “social distancing” has too often been an unchosen reality of marginalization. Let’s stay home together. And when the time comes, let’s leave our homes together as well.

 

By Mike Bonikowsky

 

Mike Bonikowsky lives and works in Dufferin County, Ontario. He is a direct support professional with the local Association for Community Living and spends the rest of his time raising two young children. He has been living and working men and women with developmental disabilities since 2007.

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

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.