Thinking about emergencies, developmental disabilities and COVID-19
By Yona Lunsky
Last week, I found myself in the situation of preparing some brief teaching about COVID-19 to health care providers who work in the developmental disabilities field. I had just a few minutes to offer my thoughts on what they should be thinking about. I wanted to come up with something simple that they would remember. My head was swimming with all sorts of ideas and issues. But I realized that I really had just two messages to impart.
Message #1: We need to do everything we can now to prevent emergency visits and hospitalizations for people with developmental disabilities
Be proactive with primary care – your primary care team is more important than ever. They know you best. They know how you are when you are well, and when you are not. They are your main advocate in the health care system, they know why it is important that you get additional help and when you need to be in the hospital or to see a specialist. They are up to date on what is happening around COVID-19 and are there to answer your questions and to help problem solve. Regular check-ins are needed now, even if everything is ok. It may feel like your doctor isn’t available because they are limiting in person visits. But here in Ontario, and in many parts of the world, talking to your doctor is easier than ever before. You can do it from home. Just be clear when you call about the importance of these proactive discussions to keep you and the person you are supporting safe and well.
Bring technology on board – Now is the time to have access to technology at home. It can be used to see your physical and mental health providers and allows them to see you. Anecdotally, we are hearing that this is very helpful in the developmental disability community. With virtual technology, you can interact with other workers, and importantly with friends and family. If this is something you don’t have access to, is there a way someone close to you can help you connect in this way? At a time when we are desperately needing routines and connections with others, this is a relatively inexpensive solution for many.
Reach out and talk – Social connectedness is crucial now. PLAN offers 5 strategies to make this happen here (https://plan.ca/).. Talking and texting regularly is important. Not everyone has a computer, but almost all of us have a phone number, and these days, many people have text messaging as well. We all need a way to be able to feel connected and to have ways to check-in with others. There may be people who are used to seeing each other and now they don’t. If they can’t see each other virtually, can they have a phone call? Even if a person doesn’t talk, do they like hearing familiar voices? Familiar songs being sung? The days are long and lonely. A phone call or text message can make a huge difference in someone’s life.
Have routine – In an earlier study on predictors of crises resulting in emergency department visits, we found that adults with developmental disabilities who were at home without a day program, workplace, or volunteer / recreational activity to attend were at greatest risk. And here we are with our workplaces, day programs and community activities all closed. We all need routine, and these activities are that much more important to people with developmental disabilities. Losing routine can lead to confusion, sadness, anger and meltdowns. But we can adapt and build new routines. We can use visual reminders show what those routines are. Knowing what routines were prior to all of this can inform us on how to develop routines that have some similarities. If one day a week there was a choir activity, then maybe the same day of the week we can have a new choir-like activity at the same time. Maybe some of the same people can join virtually and listen to songs and sing together. Or, maybe that is a good time to watch choir videos. I saw a post online about someone getting dressed in the morning and taking a drive to “go to day program,” then coming home to start that activity.
Build opportunity for choices – Now is a time where our choices can feel limited. What is happening to all of us feels like it is beyond our control. When so many things are out of our control, it is extra important to be able to have CHOICE. Think about all the small opportunities to choose in a day, for example, choices can be tied to routines that get developed, social connections, what we wear in the morning, what we do for exercise, and what we eat for dinner.
Take stock of what nourishes and what depletes you and the person you support right now - We can’t change everything, but perhaps just knowing the things that nourish and that deplete us can create opportunities. Is there one thing that is depleting you that could be altered or set aside for now, or given to someone else? Is there something nourishing that you could do more of, or something that you are not doing that nourishes you that perhaps you could bring back even in small doses? Even if it seems like nothing can be altered, it is still helpful to recognize just how much is happening that is depleting and the importance of nourishment for all of us. That recognition can also be an alert that you need help.
Back to basics – this is a pandemic, an emergency. At the same time, it is a marathon, and not a sprint. Many of us can manage for a day, even a few days with poor sleep, with skipping meals, and even without drinking enough water. But part of what nourishes us and keeps us alive, and also keeps our thinking coherent, is getting some unbroken sleep, eating nourishing food, and drinking fluids regularly. If this is proving difficult, you need help. What can others do to help make sure this is occurring? Not only does regular self-care support one’s mental health, but it also helps the body to prevent and fight infection. Physical activity is also really important and it may require some extra creativity to figure out how this gets done, when you are mostly indoors.
Notice and address small problems before they get bigger – It can be our inclination to ignore little problems, especially in times of crisis. “We will only use the health system if this gets really bad” “I can manage on my own for now, so I will just do that, and ask for help later.” In some ways this makes sense, but I would argue that for people with developmental disabilities, and maybe for all of us, it is much harder to fix full blown crises than it is to tackle smaller issues. Give time and attention to problems as they evolve and work with your network to find some innovative solutions. This both can give you a sense of mastery “hey I got something done today!” but also can help prevent larger problems.
Just three breaths – Over the past ten years, I have become increasingly interested in the area of mindfulness and its healing power for people with disabilities and for caregivers. I have learned through this work, that some of the traditional practices are not easy to implement when life is chaotic and we have multiple competing responsibilities. It is precisely at these times when we don’t have time to be mindful, that we need to pause. One of the most valuable practices we started to teach to family caregivers was the 3-minute breathing space. But when it came time to revising our caregiver workbook, we learned from our family advisors that even the 3-minute breathing space was too long! Here is something we can all do, at any time. We can stop and take 3 breaths.
Message #2: We need to be prepared. People with developmental disabilities have a higher need to visit emergency department and to be hospitalized than other people at the best of times. It is critical that we know how to best support them if and when this happens now.
Have a hospital transfer form and/or health care communication tools ready (About My Health and My Health Care Visit) – these tools give health care providers the critical information they need to provide care. They also remind them about the person at the centre of that care, and how to make them most at ease during the visit. A comprehensive binder with further detail is also helpful, but at the point of entry to hospital, staff are looking for concise information. The hospital transfer form was developed to help people with developmental disabilities during COVID-19 by putting the most important information (alerts) right up front. Page two of this short form has valuable information to support someone admitted to hospital. For ongoing health care, everyone should have a tool like “About my health” recently updated and available. A tool like “My Health Care Visit” allows everyone to prepare for the visit so the most important details are tracked and available, and also allows for communication back about what occurred and was decided at the visit.
Social stories to explain what happens – Social stories or Easy read descriptions of hospital visits are always helpful, but there are some key differences this time. For example, people will be wearing masks at the hospital and other protective equipment. This might feel scary or confusing. Helpful and familiar caregivers may not be allowed onsite. This can also be quite difficult.
Bag with resources (hand sanitizer, meds, snacks, water, activities for person & for supporters, phone and/or tablet chargers) – It may take some time to be seen at the hospital and no one wants to miss regularly scheduled medications. Having medications on hand also allows the team at the hospital to know what is being taken currently. Being comfortable is key while waiting, or if admitted to hospital which is why snacks, water and activities are so important. This type of bag should be packed and ready at the door (with health care communication tools completed) if the need arises.
Books, audio, familiar reminders of important people – it can be comforting to have photo reminders of people you know, recordings of voices of people you love, stuffies, favourite music. Being in hospital is frightening and unfamiliar so anything to make it feel more familiar matters.
Technological aid to help “be in touch” if not there – Technology is not only nice for entertainment purposes, but it is also critical at a time when there are restrictions on hospital visitors. It is important that we make it easier for people to be seen by the people who know them best and that conversations when possible can happen. Having a phone or a tablet available helps to feel less isolated. If the person needs help to connect with loved ones, include a note or instructions on how the device can be used for communication and who can be communicated with.
Form a team to provide support in hospital – keep in mind that this team may be a virtual one because of restrictions on hospital visitors. It will be easier for the hospital-based team to have a single contact person who can liaise with other members of the family and health care providers from outside the hospital. Know who can make health care decisions, and what supports are required. Make sure that information is very clear to the hospital team. Include outpatient health care providers within that circle of care so people are informed and ready to provide additional information and help with transitions out of hospital. If someone is required in hospital to help keep the person in hospital safe, make sure that information is clearly documented. It is also critical to be thinking about advanced care directives for anyone at risk of being seriously ill.
Asking for Help – Caring for someone in hospital is taxing at the best of times. Sometimes help is needed to know how to navigate, and how to deal with this changing landscape. Practical help is also important, including taking care of other caregiving responsibilities, or being there to listen without judgment.
The NHS has created an important resource at this time for health care providers. The points here are relevant whether the hospital visit is COVID-19 related or not. Additional hospital toolkit resources can be found at www.hcardd.ca and COVID-19 resources can be found at https://www.hcarddcovid.com/info.