The risk of getting sick is causing significant anxiety for all Californians. But the change in routine for people with developmental disabilities compounds the anxiety greatly for many people. There are lessons learned from other crises that we can share.
Lori Shepard of Avenues Supported Living Services provides this advice:
“We learned a lot about broken routines when the ’94 Northridge earthquake hit. Suddenly, there was an immediate break in everyone’s routines, and some people took it harder than others. Without power, water, phone service and other things that are often taken for granted, both staff and the people we support were in turmoil. With Coronavirus, there is time to prepare – and I don’t mean buying toilet paper! Here are some things to look at.
First, what are the person’s routines? This includes things they enjoy as well as things they expect. Don’t forget to include things like what day they do laundry or favorite meals. This list should be fairly inclusive without making judgments as to which aspects of these routines are the most “important” to the person. Include who they see, where they go and what they do. Of course, many of these things may be disrupted, but we need to consider them all.
Once we have this schedule (of sorts), it is time to look at what on this list is important TO the person and what is important FOR the person. For example, it is important FOR the person to get their medications, maintain sleeping patterns, get exercise and brush their teeth. Things that are important TO the person may include talking to their parents, attending their knitting group, eating dessert, and turning in recycling to buy a soda every Tuesday. Routines that can be assumed to be problematic if broken may include the staffing schedule, chore routines and going to their day program.
Figure out NOW how these elements will be done, modified or postponed during a potential period of self-isolation. Determine ALTERNATE activities to replace those that cannot be done. For example, if the person can’t go to work, school or a day program, what will (s)he be doing during those hours while at home? Prepare supplies that will be needed for the alternate activities.
For example, a person may be used to working, but will need to stay home. They may have a need to do “work” or somehow feel like they are being productive and able to contribute to a situation. Perhaps writing thank you cards to doctors, nurses, and other first responders that can be distributed after the crisis will help them feel they are contributing. If that is the case, you would want to be sure to have boxes of thank you cards in the home prior to the confinement period. If someone likes to do puzzles or crafts, make sure there are adequate supplies in the home. It may be time to think about baking or even painting the living room!
Consider the alternatives to routines that involve the community. If a person enjoys collecting and turning in recycling in order to purchase preferred items, how will this be delayed or replaced? Maybe ordering something on Amazon or stocking the snack or sodas they would have bought. If they have been attending a bible study with the same people for a few years, how will they keep up with the “homework” and keep in touch with these friends? Maybe setting up a specific time to call each person on a weekly basis or using Zoom or another platform for everyone to meet virtually.
Once you have thought through these things, it is time to share the information and plan with EVERYONE. We often make “books” around known changes (we call them transition books), but in this case they would be more of a “maybe” book. The books should include the “current/norm,” followed by the “rationale” and then the “change.” Include words and pictures and whatever other form of communication is needed. It may be good to use a Talking Photo Book (Attainment Co) or just a binder. A quick example by page:
My name is and I live at ______. I have staff/friends/family/pets. I do school/work/day program. I also church/golf/swim/gym.
Sometimes people have to make changes for a while. Sometimes people get sick/hurt/ and have to do different things for a while (if there is an example they can relate to insert it here: ex. in 2015, Sam broke his leg and could not come to day program for 6 weeks, but he came back when it was healed).
Right now, in California, there are changes in community events. Some schools, sports, amusement parks, libraries (whatever they can relate to) are closing for a while. This is to help keep people from getting sick.
Some of my activities might also close. Maybe “XXXX” will be closed for a while (as many examples as needed). I also may have to stay home in order to stay healthy and I would not be able to “xxx” for a while.
If that happens, then (staffing patterns,), where (s)he will shelter in place, replacement activities, etc,
But it won’t last forever. I will get to do “XXX” again once everyone is feeling better.
My “significant others” all know this. They are happy I will be safe. I can talk to them on the phone/skype/facetime/email/instagram/etc.
Add a few blank pages to add questions and answers as they come up.
Be sure to have the person share this book with EVERYONE in his/her life. Carry it to day program, school, clubs, church, etc. so everyone can reassure the person that they know, understand and are happy for their plan. Or if they are already staying at home, they can email the book.
Be sure to keep a copy of the notebook – there is a chance it will get lost, ripped or thrown away on accident or on purpose!
Here is an example of a Change Book that we made for a client. Note that the yellow highlighted words are the ones we will have him “read” as we go over the book with him. These are sight words for him and he gets frustrated when asked to read too much. Since we don’t want reading this to be a punishment, we designated some words for him to read, but we don’t want people making him read the whole document.
Kristen Prater, BCBA, from Leaps n’ Boundz also offers this advice, particularly for younger children:
“Please remember, kids of all abilities are smart and very perceptive. They listen to everything and may not be able to share their concerns or fears in an adult manner. Consider the following tips to ensure that everyone’s (even our little one’s) needs are being met:
1. Look for changes in behavior as signs of anxiety – old problematic behaviors reemerging, sudden quietness or bursts of emotion, increased crying or clinginess, repetitive questions or behaviors
2. Provide them language for their emotions, even if they do not actively use this (i.e. I know, there is a lot going on right now. It seems different and a little scary. We’ll get through this together).
3. Discuss what is happening in an age appropriate manner (i.e. We’re going to wash our hands, so we don’t get sick).
4. This is a great time to discuss the importance of eating a balanced diet – including fruits and vegetables
5. Maintain activities of familiarity as best as possible
The California State Council on Developmental Disabilities has written a guide to helping people navigate these troubling times, “10 Tips to Support Someone During Times of Change.“