Last Wednesday, Elizabeth asked me to attend the Disability Voices United webinar about emergency preparedness during the coronavirus for disabled people and their families on behalf of I-ASC. It got me thinking about my family, nonspeaking people, and their families during this time. I’ve been trying really hard to avoid the what-ifs but even still, they can creep into my mind…What if my parents get sick and one of my siblings or I need to support my brother, Andy, more fully? What if some of our families or nonspeakers get sick? How will they manage? Will the hospital let communication regulation partners (CRPs) in with our people? When the what-ifs get me going, I lean heavily on my mindfulness practice.
I ask myself:
What can I control? What is out of my control? Once I figure this out, I try to make the best plans I can and then try my best to focus on each day. As I listened to the webinar, I started thinking…What can I-ASC do to support nonspeakers? What can I-ASC do to support our families and practitioners? I-ASC wants to help you with this planning. In the case that someone in your home gets sick or if your nonspeaking loved one gets sick, let’s plan ahead and create some new habits so that we are as prepared as possible and reduce our anxiety. Doing some of the items on this list may be hard, so make sure to take breaks for self-care and fun!
- Build and Strengthen Your Circle of Support.
At I-ASC we try to normalize interdependence for nonspeaking people but we also need to normalize interdependence for all of us! It is okay for all of us to need help, there is no one in this world who can go it alone, and definitely not in COVID times! Think about the people who love you and your family, and ask them if they are willing to support you during this time. What do you ask for? Can they bring over some groceries so that your nonspeaking loved one doesn’t have to go out into the community? Can they talk through your emergency plan with you? Are they willing to support your family if someone gets sick? Don’t forget that you can nurture reciprocity too. We all have things we need and can offer. If we nurture an interdependent culture, COVID times might just help us move towards a more inclusive world for nonspeaking people.
- Presume Competence!
If you are worried and know about COVID-19, presuming competence means that you understand that your nonspeaker is worried too. Engage your loved one in the conversation and make plans for your family’s safety together. Talk about the hard stuff and the good stuff. Talk about their health, their thoughts, and what they understand about the virus. Keep updating your nonspeaker about the situation in your home as it changes – why is Dad working from home? Why is Michael always in his room and I’m not allowed in there? We have written free lessons on COVID-19 e Social Distancing that may be useful for these conversations.
- Post a Contact List on the Fridge
Put the names, relationships, and phone numbers of your circle of support as well as your doctors and CRPs on your fridge. This can be a daily reminder that you’ve got a network of people supporting you. It will also be an easy place to find information in case of an emergency.
- Develop an Emergency Plan
In the case that you or your nonspeaking loved one gets sick, make an emergency plan so that you are prepared. A plan can reduce anxiety. Here are some ideas to consider including in your plan:
- Emergency Contacts
- Doctors information
- Disability-related information
- Medication information
- Triggers, regulation supports, and body engagers
- Who is checking on me and how often
- Who is prepared to support me if I get sick
- What do I need if I need to leave my home
- Prepare a One Page Profile
Prepare a one-page profile in the case of sickness or hospitalization. It is only one page so it is more likely that hospital staff will read it and use it. The goal of the one-page profile is to humanize the person in care and to give important information. It is a good idea to put this in the wallet of your nonspeaking loved one, post it by the fridge, share it with your circle of support and have a couple of copies printed to bring to the hospital in case they need medical care. If hospitalized, it is great to post it in the hospital room. It is easiest to make one for yourself first and then one for someone else. Here are some ideas about what to include:
- A picture of the person when they are healthy and at their best (this will attract people’s eye to the resource)
- What people appreciate about me
- Basic Medical Information (e.g. allergies, medications, etc.)
- What is important to me: Include information relevant to a medical setting (e.g. communication preferences, tell me what you are doing before you start, etc.)
- How I want to be supported (e.g. triggers, regulation supports, body engagers, food preferences, accommodation needs in a hospital setting, etc.)
- If your loved one can be self or other injurious under stress, it is important to include this so that hospital staff is not surprised by this and so that they know the best way to support the individual in these difficult moments.
- Create a Communication Dictionary
Document the ways that your loved one communicates on and off the letterboard so that someone who doesn’t know them can understand. Create a dictionary that is specific to a hospital and to a home context. Three columns are important:
- What I might do or say
- What this may mean
- How you can respond
Here are some examples:
E.g. If I take your hand and pull you, it means that I want to go or means I want something. Here are some questions you can say in response to me:
“Where do you want to go?”
E.g. If I sing All By Myself, it means that I’m nervous. Please reassure me and tell me what is going on. Then give me a body engager to help me calm myself
E.g. I like to move around, this helps me regulate, please don’t stop me unless…
Invite different people to add to this dictionary because people communicate in different ways with different people. If you are stuck, write in the middle column “It may mean” to get started: if I’m sad, if I’m in pain, if I have a headache, etc.
- Know the Communication Rights of Nonspeaking Individuals
Read about and know the communication rights of nonspeaking individuals so that you can better advocate for them. Communication First has developed an excellent, printable resource: COVID-19 Communication Rights Toolkit
- Prepare a Self-Isolation Space in Your Home
Take a little time to declutter one room so that if someone in your home gets sick, it will be easy to isolate them and disinfect the space.
- Limit the Service Workers and Visitors in Your Home
If you can limit and reduce the number of service workers and visitors in your home. Can you move daily activities online as much as possible? Lots of S2C practitioners are offering excellent online programming (contact I-ASC for a list of S2C Practitioners offering online programming). It is important to balance limiting visitors and getting the support that you need during this time. Having time to take care of yourself is important for your mental and physical health too. If you are having some respite workers come into your home, be sure to take recommended safety precautions.
- Provide Protective Gear for Service Providers in Your Home
Put masks and gloves by your door. Ask service providers to wash their hands and keep some distance while they are in your home. Disinfect after they leave.
- Practice the Motor Steps for Hand Washing.
Although “wash your hands” is a one-step verbal command, thorough hand washing requires multiple steps. Practitioner and OT, Dana Johnson along with the I&I Guys from Growing KidsTherapy Center developed this guide for breaking down the steps to proper handwashing. It may require prompting the motor and lots of practice for people with sensory-motor difficulties to independently wash hands thoroughly. Start practicing now so that when someone is sick, they already have it mastered!
- Disinfect Your Home Regularly
Start this habit now, before a crisis, and help your nonspeaker get more comfortable with these new smells slowly. Four tablespoons (4TBS) of bleach in 1 quart of water is a good option that is healthcare provider-approved.
- Regulate Your Own Worries
Regulate your own worries so that your nonspeaker can regulate themself as well. Acknowledge what you can’t control and teach, prompt, and encourage regulation activities. Understand that self-regulation is challenging and requires trust and the development of motor skills to self-regulate. Look for the I-ASC blog on Mindfulness coming soon!
- Get Some Fresh Air and exercise in your neighborhood.
Go outside and get some exercise daily. This is not a threat to you or your family as long as you stay far away from others. In fact, getting fresh air and exercise will help keep immunity in your household strong. Try to find routes with limited stairs, benches, and people so that it is easier for your nonspeaking loved one to navigate this safely. Remember that inhibiting motor actions can be just as hard as initiating them, so you may need to provide prompts when concluding an activity. Provide motor prompts to help your nonspeaking loved one stay safe.
- Practice Self-care…Repeat!
This is a difficult time for everyone and a lot is changing. It is also very hard to think about and plan for emergency scenarios. Make time and take space to care for yourself and your well-being while you make preparations and after you have prepared. Wellness and joy don’t come all at once, they happen every day through small actions. If you’re stuck, here are some ideas:
- Play your favorite music
- Set up an online or phone call with friends and family and DON’T talk about COVID-19!
- Garden, it’s a great time to start seedlings
- Read or listen to an audible version of a funny book with your family
- Make and eat good food
- Talk about things that you are grateful for and encourage your family to do so too
The items on this list were adapted from information provided by Disability Voices United. I want to thank them for putting together such an excellent webinar. If you are interested in other webinars and other COVID-19 resources see Disability Voices United coronavirus
Disability Voices United (March 25, 2020). Coronavirus emergency preparedness webinar for people with developmental disabilities and their families [Webinar]. Retrieved from: http://disabilityvoicesunited.org/cv/webinar-on-coronavirus-emergency-preparedness-planning-for-people-with-disabilities-and-their-families/
Author: Monica van Schaik
S2C Practitioner & I-ASC Leadership Cadre Member)