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.

 

Do you have permission to touch disabled people?

Do your support staff seek permission before they touch people? Our members use us to create better support relationships. Watch this video:

 

 

Our new module ‘Personal and Intimate Care’ offers several very practical strategies that can be used to seek permission even when people do not use words to speak.

 

Parallel talk is one such example. Parallel talk simply means describing your actions before and as you take them. It can be as simple as: “I’m just going to reach over for the shaving foam…okay I’m ready to start by helping you wet your face…now are you ready for me to carry on?” The key is ensuring the person is always aware of what is happening well before it happens. A key word, phrase or behavior can indicate someone’s choice. Many people give permission without speech – it could be their facial expression, their posture or simply their gaze. So you wait for their response, then move on.

 

In the busyness of our work we can forget about humanity really fast. Parallel talk slows us down and reestablishes that connection. Plus when combined with a routine that all staff follow, it can encourage learning. Every time you describe what you do, the individual gets to hear and experience the routine. Without knowing it, learning starts happening and at that point even people with profound disabilities will start to participate in the routine.

 

Preserving dignity and promoting control are two of the most important tasks a support staff person undertakes. Why? Because we expect it ourselves.

 

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.

 

Happy holidays?

For most of us, the busy holiday season means time to entertain, party and enjoy some down time with friends and family. But for people with intellectual and developmental disabilities, it can be an intensely lonely time of the year when the social isolation they already experience only gets worse. Imagine if the only people you saw over Thanksgiving, Christmas and New Year were those paid to support you?

 

Friendships – all year round, not just in the holidays – as Open Future contributor and self-advocate Steve Dymond says, are crucial:

 

“It’s important for me to have friends because without friends you haven’t got anyone else you can rely on. It’s a good feeling to know you have some people there if you need them. It’s all about sharing experiences and sharing different things between each other.”

 

Open Future Learning strongly believes that the support staff person’s most important role is to help people to develop and maintain friendships. Community and friendships help us to live longer and happier lives, yet a recent review of research showed that 50% of people we support experience chronic loneliness.

 

As Open Future contributor David Pitonyak says in this film: “Nothing is more important than building meaningful and enduring relationships.”

Helping people to connect with others in their communities can seem like a daunting task. Open Future contributor Margaret Cushen says a community mapping exercise is one way to start building connections, just by writing down or photographing local places and activities that are – or could be – important to someone.

 

Leading thinker Beth Mount adds:

 

“We have to know people’s communities inside and out. We go into community as an explorer. What are the assets of this place, what do people need done here, what do people need help with, where are the opportunities to contribute? Talk to people, go explore! Find out what is here in this place and how that might be a world that someone with a disability can bring and offer something.”

To build and connect someone to new friendships most successfully means being the kind of support worker who recognizes they are not at the center of things. Instead, their role is clearly to help people take control of their own lives as active members of the community. “As a support worker,” says Open Future contributor Jack Pearpoint “it’s really important for you not to create dependency…a key role is to expand the network of support, build the circle of friends, and engage people in the community.”

 

It is worth bearing in mind the basic tasks of good support as developed by John O’Brien which are as pertinent now as they were almost 40 years ago when they were first developed. To help people become full citizens, John said, the first step is to discover their gifts and interests, create opportunities in community and help people share those gifts.

 

One story David Pitonyak tells is about once working with a young man called Roland. Roland was very aggressive, but he and David made a connection. Returning to his shift one evening in Vermont, he noticed Roland had left the home without anyone noticing. David eventually found Roland tramping through the snow walking towards his house. David recalls:

 

“I realized that an essential place of Roland’s suffering is that he didn’t have anybody in his life. We knew he experienced autism; we knew he was aggressive. But nobody had ever noticed that he had no people that he wanted to be with.”

 

David shares that he used his close and trusted relationship with Roland to help Roland to explore and experience things he had never tried before. David explains that it wasn’t long before Roland was making expansive lists detailing all the things he wanted to do and all the people he wanted to see in a day.

 

As David says, relationships are critical to our wellbeing. Having something to look forward to helps us cope better with our daily lives. “A lot of people who experience disability don’t have that much to look forward to…I really believe we should help people find more joy in their lives”.

 

And what better time to find that joy than this holiday season.

 

Learn more about the module ‘Building Friendships and Community’ and all of the Open Future Learning modules here.

 

Please email hello@openfuturelearning.org to schedule a free demo and trial.

 

Do people with disabilities have a right to choice?

Did you know?

– Our learning modules be used to train groups of staff.

– When you train groups of staff you only use one seat on your membership.

– You can complete our modules on any device.

– You can make your own modules.

– When staff access a custom module they do not use a seat.

 

Have a free demo and trial by emailing hello@openfuturelearning.org

 

Learn more about all of our modules here.

 

 

I don’t see your disability!

 

To recognize that every person is unique and to respect each person’s differences define diversity and the mission of our new module. Watch this:

 

 

Co written by Charles Archer, Karyn Harvey, Roger Ramsukh and Dave Hingsburger this module features four very different perspectives on diversity. These perspectives will in turn explore how you can allow people to define who they are, how they lead their lives, what they need to be safe, and how your support can lead them to reach their potential in all that they do.

 

Learn more about all of our modules here.

 

 

Supported Decision-Making

The people you support can and should make decisions. This module will help you to learn how.

The relationship you have with the people you support is an intimate one. Over time you develop trust, respect and understanding. This module will help you to understand how you can support people to claim their voice so they can express their opinions, and make their choices.

This module includes video presentations from Michael Kendrick, Malia Carlotto, and Bob Fleischner.

On successful completion of this module, you will be able to:

– Understand the different ways that people make decisions.

– Describe supported decision-making and how it works.

– Explain the support people will need to make their own decisions.

Module Length: 95 Minutes

Learn more about all of our modules here.

 

About Our Pricing

This video explains our pricing and how we work with our members to provide the very best value for money:

Learn more about our pricing here and if you have any questions please do not hesitate to contact us via hello@openfuturelearning.org

 

Building Valued Social Roles

Narrated by Beth Mount, this excerpt from our module “Valued Social Roles” explains the importance of helping people to build wide, deep and sustaining relationships.

This module is written by Marc Tumeinski from the Social Role Valorization (SRV) Implementation Project. Marc uses his intimate knowledge of SRV to help learners to reflect on both the barriers to the “Good Things of Life” and how valued social roles may help the people we support to have greater access to these good things.

 

 

This module includes video presentations from Marc Tumeinski, Gary Kent, Beth Mount, Steve Dymond, Jack Pearpoint, and Simon Duffy.

 

On successful completion of this module, learners will be able to:

 

    • Describe related elements of social devaluation: negative perception followed by negative treatment.
    • Describe a shared practice of human service involving vision, attitudes, and skills and actions.
    • Understand and articulate a shared practice for supporting the people you support.
    • Describe the “good things in life” and valued social roles with examples, and also explain how they are linked.
    • Describe devalued roles as wounds, how these occur, and what the consequences of these wounds may be.
    • Understand and articulate skills and attitudes which support our vision including: Stepping into the shoes of the people you support, serving one person at a time, and holding high, positive expectations for the people you support and for ourselves.
    • Describe how rejection, distancing, and communication can be potential barriers to applying this vision.
    • Explain how you can be a better listener.
    • Explain how person-centered planning can help to raise possibilities and expectations.
    • Understand the importance of, and how to enhance image and competency, and how to avoid the associated challenges that may include life wasting, lost opportunities, and society’s own perception.

 

Everyone Can Learn

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Heather Simmons shares an insightful story illuminating the idea that people of all abilities have the ability to learn giving the opportunity. Although Heather was originally from Scotland she now lives in Perth Australia where, with her husband Richard Hill, … Continue reading

TRAUMA-INFORMED CARE

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Repeated exposure to abuse, social exclusion and rejection has had a devastating affect on the people we support. Trauma affects the way our brains develop and function and it leaves a lasting impression. Welcome to our new module titled ‘Trauma-Informed Care’ … Continue reading

DROWNING BY DAVID PITONYAK

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It might seem odd that a professional would ignore someone who is drowning. But as David Pitonyak explains, this happens all the time in our field. People who have disabilities and difficult behavior are often overboard and terrified, and we … Continue reading

Relationships, Dating, and Intimacy by Dave Hingsburger

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Relationship, Dating and Intimacy expert, Dave Hingsburger, shares with you his knowledge about the importance of assisting the people we support with developing positive relationships, experiencing dating and intimacy in order to have a fulfilled life. This side-by-side module allows the people who receive support and the people who provide support to learn together. Continue reading

Difficult Families?

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What can we learn from the families we support and work with? This video is a celebration of families and what we can learn from them. The moving and thoughtful words of the families who made this video will help … Continue reading

Slightly Inspirational Health and Safety Training

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The words ‘inspirational’ and ‘health and safety’ may not sit easily together. But not many health and safety training courses feature contributions from leading thinkers like Dave Hingsburger, David Pitonyak, Dave Hasbury, and John Raffaele. This module will help to … Continue reading