You are probably already familiar with the chaos that is everyday when you are parenting a child with medical complexity. Organization can go a long way in helping you survive the chaos, that rollercoaster ride in the dark with both predictable and unpredictable ups and downs. Beyond the great relief of stress, we are convinced that organization will actually improve the safety and quality of your child’s care. Get started with the following:
Organize your paperwork
This is one of the very best investments you can make, worth every minute of preparation. If you are struggling to organize your paperwork, tell your child’s healthcare team and ask for help. As you know, when a child has multiple issues, with care provided by multiple professionals in multiple locations, and takes multiple medications… there is a lot of paperwork! Not getting organized means that papers are all over your house and hard (impossible) to quickly retrieve when you need them. If you are not organized, you may miss important appointments, waste time trying to find contact information, end up repeating the same information at every healthcare visit… the list goes on and on. On the other hand, getting your paperwork organized helps you:
Save time and energy by having important data readily available
Reduce the risk of errors that might arise from forgetting important information
Improve your ability to effectively advocate for your child by having key documents close at hand
Facilitate the care of your child, especially as your child transitions between care settings (eg, from home to the hospital)
Basically, getting organized with your child’s care can help you improve the SAFETY & EFFECTIVENESS of your child’s care and will REDUCE your daily stress. And, in the event that you are ill or absent, someone else can refer to these resources to help care for your child (eg, medication list, nutrition plan).
Here’s how you can get started:
- Gather existing information (start requesting your copy!) including prescriptions, medication lists, immunization records, any evaluation reports, imaging study reports, contact information, any teaching materials you have been given, etc.
- Sort through the information and start to put documents into categories (you choose the categories that are most relevant for your child and family).
- Obtain an expandable file folder (some families like to make one for healthcare and another one for school).
- Bring the folder with you to your child’s appointments.
- Keep the folder up to date by removing outdated materials and adding in relevant new ones.
- Make copies of documents that you will probably want to share on a regular basis and put them in a clear plastic document protector so that they are readily available (eg, medical summary, emergency care plan, medication list).
Ask your healthcare team if they have ready-made templates to use in your care organizer. We are in the process of making bilingual PDF documents for easy download here. In the meantime, see The Center For Children with Special Needs website for either templates or ideas to get you started (not available in French).
Creating care plans
First of all, what is a care plan? A care plan is a set of instructions about a type of care that your child requires. It could be a summary document that lists all of your child’s needs or it can be specifically about one aspect of your child’s care (eg, treatment of seizures). A care plan should be made in collaboration with your child’s healthcare team and should be readily available to whoever might need to use it. Keep a copy of your child’s care plans in your care organizer (with some ready to go photocopies) and a photo of the care plan on your cellphone.
A care plan can be structure in many different ways. Many families like to keep a few versions of a care plan, that is:
“Green light” = Well day care plan (a description of usual care)
“Yellow light” = Sick day care plan (a description of how the care should be modified if the child is unwell)
“Red light” = Urgent care plan (suggestions on interventions in the case of an acute deterioration)
The urgent care plan should also be shared with your child’s closest emergency department and an up to date copy should be readily accessible in your child’s electronic health record. Templates of care plans can be found at several websites listed in Links of interest.
We are in the process of creating bilingual care plan templates in the form of printable fillable PDF documents. Print out a blank template and bring it to your next healthcare visit to work on developing care plans with your child’s healthcare team.
Prepare travel bags in advance
Basically this means being ready to leave your house, quickly, at any time and knowing that you have the various items that you need so that your child is safe and comfortable. Travel could mean an urgent trip to the hospital or a visit to the park – either way, you can rest easy knowing that you have the items that your child needs.
In each method of care, there is a section called “Required materials”, this tells you what items you will need to have on hand to do that particular care for your child. Talk to your child’s healthcare team and make a list of the items that you need to have on hand when you leave your home with your child. Think about the common issues that your child needs daily (eg, suctioning the mouth or airway) and ensure that you have the tools on hand to meet your child’s need wherever you are. Also consider emergency situations and discuss with your child healthcare team what items should be included in your travel bag (eg, Epi pen, hemostat clamp, a form of glucose for the child who has hypoglycemia, etc).
Once you have a complete list, make photocopies of it and keep one copy in the care organizer. Take a picture of the list and keep it on your cellphone.
Pack a bag with the needed equipment and keep it near the exit of your home. If you have more than one child with special needs, consider colour coding to keep the bags separate.
General strategies for organization
The general rule that 2 minutes in preparation saves 10 minutes in completing a task is especially true for parents looking after a child with complex needs. Once you have organized your paperwork and prepared a travel bag, then look for other ways to make the tasks that you do often run more efficiently. For example:
- Keep care supplies at hand, in the place where you most often provide the care. See Prepare your home: setting up space for care for more information. Consider the use of a rolling cart, with pull out drawers to store different types of materials. Put labels on the outside of the drawers so you can easily know what is inside. Check your cart at least once a week and make sure you have adequate quantities of the materials that you need.
- Post a summary list of care steps (each care practice comes with a printable list or make your own) on a wall close to where you provide care so that you have a readily visible reminder of what to do.
- Use colour coding to sort and quickly identify different items. For example, you may put all of your child’s materials related to feeding and nutrition in a blue bag and all the of the respiratory care equipment in another colour bag. Look for clear bags so that you can quickly see what is inside.
- Teach everyone who is providing care to your child to use the same methods and equipment. Many families create a detailed “care binder” that lists their child’s needs from A to Z. This is a great resource for babysitters and other caregivers who might not know your child as well as you do.
- Use a calendar to keep track of appointments and tasks. There are many electronic versions available; these are helpful when you are sharing a calendar with other family members or other caregivers. Paper also works; choose the methods that you are most comfortable with.
- Big rocks first: as you are preparing to organize your day, first identify the key priority tasks of each day and schedule them in so that these essential tasks will get done. Then consider medium priority tasks (good if you get them done but not essential). Delegate low priority tasks to someone else or consider taking them off your daily list of things to do.
- Talk to other parents! Most often, the best timesaving tips come from other parents that are having similar experiences as you. See Links of interest for more information.