#062 Five basic points to focus on for safety during this pandemic.

Genia:
Hello and thank you so much for tuning into the Good Things in Life podcast. If you’re just meeting me for the first time, my name is Genia Stephen. I have a sister and a son with disabilities and medical complexities and thanks to my fierce and committed mom, I grew up in a disability positive community of world-renowned thought leaders and mentors in the road of disability. I’m also a midwife in Ontario, Canada providing clinical care in people’s home, in the hospital, and in the community. And I’m also completing my Masters of Science Dissertation in Evidence-Based Health Care at the University of Oxford. My world basically bridges the health and disability fields. I’m really glad to be here today to talk to you about what we can focus on as families that have kids with disabilities during this pandemic. You know, the world is a really noisy place right now online and in the news and it’s very overwhelming.

Genia:
I think that we can really stay focused on some key concepts that will hold us in really good stead as we move through this. Okay, let’s get started. This presentation, this podcast episode, it is not for you if your loved one is actually sick right now with Covid-19 or hospitalized for some other reason. This is not for you. It’s not enough if your loved one lives in a group residence like a group home or a long-term care facility. And it’s also not enough if your loved one is technology dependent. For example, if they are on a ventilator at home. And it’s also probably not enough if you have regular nursing coming into your home, especially if there are many nurses coming into your home. This episode is for you if you have a child or a loved one with a disability or some other person in your life who requires support and you think that they are, or they might be vulnerable to severe complications if they become sick with Covid-19 or that they might be in big trouble if you got sick and couldn’t care for them.

Genia:
You’re probably going to continue listening here and showing up because you’re worried. You know what happens if I get sick or my child gets sick? I’m quite sure that you’re feeling uncertain. You know, it feels like information is changing every day and you might even be wondering whether or not we know anything about this virus or what to do about it. You might be feeling overwhelmed. I sometimes am. You know, you’re supposed to be working from home, you’re taking care of your family, you’re homeschooling or remote schooling, or trying to entertain your kids. You know, all the therapies are canceled. Although actually it might be feeling like that’s a blessing. But you’re trying to figure out how to make, how to keep people safe and how to make good decisions while you’ve got all these other pressures.

Genia:
I totally get it. I’m in the same boat. Here’s the thing. I love this quote by James Clear, “Each day is a new battle to say yes to what matters and to say no to what doesn’t. Focus is a practice.” Listen, I’m not trying to oversimplify this situation. I know that there are many things that require our attention right now, but also there’s a lot of speculation and a lot of noise and I think that we can focus our attention on five basic steps. While it might feel like the information and recommendations change all the time, actually there are some solid principles that are evidence-based and that are not changing and they’re probably not going to change. I think it’s good for us to really be focused on what matters right now and to be practicing that focus in order to get us through this. Again, I’m not trying to oversimplify this situation. I know that there are a lot of things that require attention, but I feel like we really can break it down a little bit.

Genia:
At the time that I’m recording this, we are in the very first wave of the Covid-19 pandemic, and right now the single most important thing that you can do is stay home. I know you’ve heard this. Staying home and leaving home only if absolutely necessary is the single most effective way of resolving the pandemic at least this first wave and reducing harm and reducing risk to you and your family. In some areas of the world, people are forbidden to leave their houses unless they have a pass of some kind and that’s a pretty clear rule, but in other areas of the world, you’re simply encouraged to stay home and maybe by law you’re not allowed to gather in large groups. If this is the case for you, then I strongly recommend that you follow the principle of physical distancing and staying home more than you follow the law.

Genia:
Listen, there are all kinds of people who are presenting very valid arguments about the cost of staying home. Mental health is one clear and important example, but the bottom line is that staying home works and our families have a lot at stake. If we get sick or our kids get sick, then our situation becomes dire for reasons above and beyond whether or not the illness becomes severe. Things like our support needs, visiting restrictions at hospitals, rationing of house services, lack of available formal and informal social supports. It’s a really big deal if our families get sick, so if you overcompensate on this measure, even if your local restrictions are loose right now, you will be better off and safer. I just want to add some clarification. Lots of people are hearing about the six-foot rule. If you’re not at home and you must go out and you are around other people, six feet is a protective measure.

Genia:
That is true, but it is really only reserved for when you must go out. Gathering on your driveway to chat with neighbors and staying six feet apart is not as good as talking to them on the phone. Going out and going for bike rides with people and all of those kinds of ways in which people are kind of saying, “Well, the six-foot rule is really the most important rule”, really kind of bends the situation and it’s not as effective as just staying home and only spending time with people who are in your household. Okay, so staying home, staying away from people. The second basic step is to wash your hands and don’t touch your face. Next to just avoiding people altogether, washing your hands and not touching your face are the most important prevention strategies. Let me be super clear about this. Wearing masks and gloves is not as effective as washing your hands and not touching your face.

Genia:
A mask is only going to protect you if somebody sneezes into your mouth and nose and only if you know how to use a mask properly, including how to put it on, how to wear it, and how to take it off. Honestly, if somebody does sneeze or cough on you while you’re wearing a mask, you’re probably going to get sick anyway because those droplets are going to be all over your face. It’s all about washing and not touching your face. A mask is not an effective substitute for this. Listen, if we were all wearing masks, every single human, then it might help a bit because we wouldn’t be breathing on each other and on the things around us, but only if we also wash our hands and don’t touch our face. A lot of people are talking about cloth masks right now and a lot of people are talking about the lack of PPE, which stands for personal protective equipment for healthcare providers.

Genia:
Masks are useful if somebody might cough or sneeze in your face like a health care provider might experience, but they will not do any good to you in a grocery store or the pharmacy or the parking lot of your car or sitting around a living room as far as other people being a risk to you. Even if there were enough mass to go around the whole world, we would still need to stay home, wash our hands, and not touch our faces. The benefit of wearing a mask in public is that you’re protecting other people from your breath. If you have the virus and you don’t yet know it, gloves as well, do not protect you. You can stick your bare hands in a bucket of Covid-19 and you would not get sick as long as you wash your hands properly afterwards and you didn’t touch your face.

Genia:
When healthcare providers wear gloves, we do it under very specific circumstances that involve procedures and bodily fluids and entry into the body. We wash our hands, we put on the gloves with proper technique, do what we need to do, and then take off the gloves using proper technique and wash our hands immediately. When people are wearing gloves in public right now or around the home, if they are a support person, they’re wearing them for the duration of a long activity and then they take them off usually improperly. During that activity, they’re spreading germs over everything they touch the same way they would if they weren’t wearing gloves in the first place. Probably even more so because they think wrongly that wearing the gloves is protecting them in some way. Really don’t fuss about gloves and masks in particular. It’s not the most important thing and gloves and masks are not widely available for you anyway.

Genia:
I’ll include a link in the show notes with a guide to using masks properly if you do have masks available to you but instead focus on washing or sanitizing your hands if you are out and don’t touch your face. And if you need to sneeze or cough, do it in your sleeve and then sanitize your hands, and if you’re sneezing and coughing then for all this good and Holy, please don’t go out. And get in touch with somebody, a health care provider to talk about what you should do next if you’re not actively sick and you don’t need hospital care. Focus more on washing your hands and not touching your face than trying to learn how to sew masks, please.

Genia:
Getting sick with Covid-19 is scary for anyone. But if your family member with a disability gets sick, there are some really significant extra layers of worry. I mean our family members often have communication challenges. They require additional support just to get through their good days. It just takes more to support somebody with a disability well through a hospitalization compared to somebody who is generally able-bodied and able to advocate for themselves and communicate with the health care team and then there are all the questions that this pandemic makes even more complicated. Will you even be allowed into the hospital with the kinds of visitor restrictions that are currently standard? If you are allowed in, how will you advocate to ensure that your loved one gets the care that they need, especially if health resources are limited? These are very real worries. It’s not some imaginary boogyman, but real threats that people are already facing in some communities.

Genia:
It’s incredibly helpful for us to be prepared and knowledgeable about how to reduce the risk of illness, how to advocate for family presence at the bedside if somebody does become ill, and if you are at the bedside, how to effectively advocate for and safeguard vulnerable people while they’re in the hospital. I did like to invite you to join me for a workshop on medical safeguarding. We’ll focus on reducing the risk to illness to keep people out of the hospital in the first place. How to advocate and argue to ensure that someone can stay with the person if they do need to be hospitalized and we’ll focus on how you can maximize safety, quality of care, and comfort for your loved one with a disability as a medical advocate while they’re in the hospital. To register and find out more, go to goodthingsinlife.org/staysafe. My heart and my thoughts are with you all. I’m thinking about you every day.

Genia:
Okay, so basic step number three is reducing the risks of in-home supporters. It’s an issue that many of us have to figure out. It’s something that we have to grapple with and it’s a basic reality in our lives. If you’ve got a good handle on step one and two, staying at home and washing your hands and not touching your face, then the next thing to do to reduce the risks of having supporters in your home is to make sure that your supporters also understand and are following these measures. If supporters are themselves staying at home unless absolutely necessary. If they are frequent, frequently washing their hands and not touching their face, then they will very significantly reduce the chances that they will bring Covid-19 into your home. There are some additional measures that you can consider. You can ask that they wear clean clothes to your home. So they haven’t gone anywhere else, they haven’t seen anywhere else, seen anyone else in the clothes, they just come straight to your house.

Genia:
And then when they’re done in your home, you can recommend that they remove them, bag them, and wear a clean set of clothes home to prevent any bugs that are in your home from getting into their home or in the community. If your supporter is somebody who visits many homes, then you’ve got some decisions to make. Can you have somebody that you know make some cloth gowns so that they can wear one to cover their clothes if they’re coming from someone else’s home and they can’t change in between? Does a local agency have PPE that they can provide to the supporter? Unfortunately, probably not is the answer. But you can and should ask. In many jurisdictions, people receiving in-home supports have not been included as a priority recipient of PPE and this is a massive problem. What we can do about this is a bit beyond the scope of this episode, but I do suggest that you connect with your local organizations, agencies, and services about what can be done politically or otherwise to improve the situation.

Genia:
If you’re not connected to an organization agency or health service that’s advocating for PPE, then your chances of getting PPE for individualized support, individual support people is even less, unfortunately. If local organizations, agencies, and services are advocating on your behalf to make sure that supporters have access to PPE, then tell them your story, thank them for their advocacy, and ask them how you can help them in their efforts. Consider sending an encouraging email or a card or some token of appreciation. The person who receives it is probably being yelled at from all sides and they likely are doing everything that they can to figure it out. Kimberly, Gavin, and team, my local support organization leadership, I am thinking of each and every one of you right now and I am sending my love. But here’s the thing, even hospitals don’t have enough PPE in many communities, in many regions, in many states and provinces in countries. Supplies are on backorder.

Genia:
It is possible that things will improve over time, but if you’re being told that there just isn’t enough PPE to get your supporters through this, it’s probably true. The most powerful thing that we can do given this reality is to encourage supporters to strictly follow basic steps one and two: stay home unless absolutely necessary and be attentive to hand hygiene and not touching your face. I have some thoughts on this. I know it’s just so very complex for so many of us. In-home support is an absolute necessity for many people. People who can’t self isolate because they must have support in their home, are more likely to catch Covid-19. It’s a fact. But if it can’t be avoided, if support in the home can’t be avoided or if it shouldn’t be avoided because the costs of stopping support are just too high, then please stop fretting about it and put some protective preventative measures in place and then stop spending time thinking about something that you can do nothing about.

Genia:
I know that this may seem harsh and it may seem unrealistic. How do you stop worrying about this? But really there is so many things causing anxiety, consuming our energy and our courage right now. And if this is something that you can’t impact, let’s focus on something you can. If you need more help thinking about what to do about in-home supporters, then let me know. I’m happy to talk about it further. But basic precautions are still your most powerful defense. Worrying about it is not. Okay. So this connects directly. Once you know how to prevent infection, which is you know, basic step number one and two and you’ve done that and you’ve done what you can to limit the risk of in-home supports, which is basic step number three, then the next basic step is to stop consuming content that increases your anxiety, fear, and worry.

Genia:
You’re not being responsible by doing this and you aren’t keeping your family safer either. I’m telling you this, but really I’m reminding myself as well. There is no new information that is likely going to change basic steps one through three except perhaps the availability of PPE like masks and new recommendations around their use. But listen, if that’s the case, you are not going to have to go scrolling through Facebook and reading tons of scary posts and case stories and predictions in order to find out that those protective measures are now available to you. You’re also not going to have to do any of those things in order to find out that stay home restrictions have been lifted. You can email me if you want to stay off social media altogether and I’ll share the facts. You know, people will find you with that information and if you’re worried that they won’t, let me know.

Genia:
The situation reminds me of the serenity prayer, which is often cited as, “God, grant me the serenity to accept the things I cannot change, the courage to change the things that I can and the wisdom to know the difference.” This prayer originally by Niebuhr, I may be saying his name wrong, actually originally asked for courage first and specifically for changing things that must be changed, not things that simply can be changed. Originally the prayer was, let me get, sorry, I’m just trying to get it pulled up here. Okay. Originally the prayer was, “Father, give us courage to change what must be altered, serenity to accept what cannot be helped, and the insight to know the one from the other.” And I think that this is, in that order specifically, excellent advice for how to get through this pandemic well and paying attention to our mental health and our degree of worry.

Genia:
Okay, so now we stopped the frightening work of consuming tons of scary content. Now what I’m going to encourage you to do is to start the scary work of reaching out and extending invitations. I think we’re all probably riding waves of anxiety. Sometimes we’re okay and other times not so much. You know, we’re worried, we’re scared. Many of us are feeding that as we’ve been talking about by consuming all kinds of scary media in the pursuit of staying informed and trying to understand our current reality. But how many of us are doing the really scary work of supporting our sons and daughters to get and stay connected with their peers during this time? Helping them to be good friends, neighbors, volunteers, sisters and brothers, grandchildren, nieces and nephews and citizens during this time. Reaching out and doing the scary work of inviting connection is the most important thing that we can be doing after taking care of the basic health and safety of our family.

Genia:
Keeping calm and moving on kind of thing. But moving on to what? Really it’s all the same priorities as we’ve always had. Social rules, connection, relationships, social capital, the good things in life. The pandemic obviously presents us with some pretty unique challenges and I’m the last one to suggest to you that you should overwhelm yourself with lofty goals of what we can accomplish right now, but I am going to challenge you to stop allowing your energy in your courage to be consumed with pandemic thinking that won’t change anything and to start using your energy and your courage to support your son or daughter to reach out and connect even though it’s scary and it feels vulnerable. Even though we know that our kids are awesome and that people should be clamoring to be their friends and we’re offended that they aren’t. Even though all of that, I still want to challenge you to feel the vulnerability, the fear of rejection in silence, the social awkwardness, and to reach out.

Genia:
There’s nothing more important. When this pandemic ends and we all leave our homes and reenter our schools, our places of work in our community, the thing that’s going to have made the biggest difference in the lives of our loved ones is how we connected with others during the pandemic. And it’s going to make a big difference in how we pick up our lives and move on. If you keep a connection lens, then all kinds of things are possible. If you’re thinking about entertaining your kids by reading a book and think about that through a connection lens, you might think, well, who could you also be reading a book with and how could you reach out to them to do that? Working on literacy? Who could you help to do a shared reading activity with your child? Or who could they write a note to? If your child is using AAC, again, there are tons of connection opportunities that are going to be powerful motivators for your child and powerful role modeling and teaching. So the pedagogy is there and there’s that benefit of connection. Pandemics have their own curriculum, their own priorities, lessons that can be learned. When we get to set our own priorities here, and I argue that a connection lens will hold you in very good stead no matter what other priorities you have for your child or what other priorities other people might have for your child.

Genia:
I just, this really matters. Obviously this is not all you need to know if you have in-home nursing procedures going on, medical technology use or someone does get sick in your family. But if that is not the case, then focusing on these five basic points is a solid strategy for safety and for building the good things in life during this pandemic. Okay. Again, to review those five basics are number one, staying home. Number two, washing your hands and not touching your face. Number three, minimizing the risks of in-home supporters. Number four, stop consuming scary content. Number five, start the scary work of supporting your loved one to connect with others. If you are concerned about advocating for someone who’s ill and in the hospital, then, you know, I’m thinking about that too. And I invite you to join me for a workshop on medical advocacy.

Genia:
Right now, hospitals are restricting visitors and supporters, and this can have life-threatening consequences for people with disabilities who might not be able to communicate how they’re feeling, their choices or advocate for themselves. This workshop will help you to develop a plan for arguing to have bedside presence even in the face of visitor restrictions and offer some guidance for how to be an effective medical advocate. You can find out more and register at goodthingsinlife.org/stay safe. Until next time, I wish you and your loved ones, health, security, and a peaceful heart, and I wish and hope that you will find ways of staying connected with others. You know, this pandemic has made it so super clear that our connection to others, our relationship rules, you know, this is really the core of the good things in life and I wish that that be your focus during this time. Take care. Bye, bye.