Care Maps & Parenting Plans: Medically Complex Kids
This post is the first in a series of posts in which I will be addressing parental planning for children with medical complexity in the context of separation/divorce. This discussion involves the role of care maps, which I will say more about below.
At first glance some may understand the existence of a well-crafted care map would provide sufficient information about care needs to inform a solid and safe parenting plan. However, parenting plans where medically complex children are concerned inevitably involve a great deal more than just a one dimensional image of the care-world of the child.
Additional information includes the role of PSW’s in the child’s care, home nursing agencies and tasks performed, and others involved in the child’s care. At least to the extent that they can be and this is itself another crucial issue that must be addressed in a solid and safe parenting plan.
Input into crafting a parenting plan in the context of child with complex care needs benefits from the assistance of someone who fully grasps the ‘gestalt’ of complex care, family life, work and emergencies inside and out, and not only of the crafting of a parenting plan. In this post I begin with a brief discussion about care maps for children with complex care needs. Subsequent posts will address features that must be attended to in crafting appropriate plans for parents whose care extends beyond parenting into the realm of medical care provisioning, or what has been called extraordinary care by care some experts.
The Care Map
Definition of a Care Map
A care map is a kind of ‘chart’ created (most often) by the primarily caregiving-parent. The intention behind the care map is to provide anyone looking at the map to get a bird’s eye view of the caregiving landscape of the child for whom it was charted. \That is, the child with complex care needs. It does not genetrally list all of the steps a parent must take to carry out all of the attendant functions related to the care map.
How is it Put Together?
In the middle of the map there is a square or a circle with the child’s name printed in it. The space around the child’s name usually contains the names of other care-involved family members. This may include the names of child carers and teen care providers (a Blog on young carers in this context is on its way!).
A young child wearing a colourful sweat-shirt and holding a large number of crayons with both hands largely match the top the child is wearing.
Then, lines branch out from the centre with the names of the child and thier carers. These branches lead to a variety of care related domains (these have been referred to ‘cartograpohic connectors’). Smaller branches then lead from these out toewards sub-domains.
Each domain may be signified with its own colour, as seen often on maps of the world. For example, Pediatric Immunology may be green, Pediatric gastroenterology may be pink, pediatric opthamology may be grey and so on. There may be a domain for homecare nurse organizations and schedules, and so on, depending on the child’s care team, services and other supports. The scale (size) of various domains may refelct frequency of follow up appointments or importance at a given time.
See: R.C. Antonelli et al. Care Mapping: A How to Guide for Patients and Families. By R.C. Antonelli et al. Boston Children’s Hospital. Note that in the below link there are further references to other articles on care mapping.
https://www.childrenshospital.org/sites/default/files/2022-04/integrated-care-mapping-families.pdf
For Dispute Resolotion Professionals: Some Essential Inquiries About The Client’s Care Map
For professionals who have been provided with a scanned care map, there are questions to ask about the map long before moving on to crafting the parenting plan. Some of these questions are listed below, but you will undoubtedly be able to come up with others related to the client’s and child’s/children’s circumstances.
Who formulated (put together) the care map provided?
Did a second or third person assist in its creation? Who were they?
Has this same person been the primary ‘map maker’ in the before-separation family? If so, why was that? Reasons needed should be noted and questioned.
Is one party or has one party ever been unconnected or disconnected with the planning care? Why?
Who all in any wider care-circle consults with the plan?
Is there a digital version of the plan in place?
Who modifies or corrects the plan when required and how often?
How reliable generally are various appointment times on the care map?
How reliable are service provision dates or times on the map (i.e. provincial home care nurses)?
How many new or fully updated care plans have their been at the point of the first interview?
Depending on the child’s health condition (s), use a scale to rate the severity of the child or children’s condition. Later you need collateral information concerning severity.
Inquire into the stability of the child’s health and how that is accounted for in the present care plan and parenting resposnibilities. Emergency preparedness is ‘normal’ life in the context of these families.
If a file has been sent by the parties lawyers to a family mediator, or to a consultant, all professionals will need to be fully aware of what parenting in this context actually consists of. They need to know for example if it crosses the threshold referred to in the relevant literature as “extraordinary” care. Some parent’s know how to set up a PIC line, insert IV shunts and GI Tubes, and so on. After separation both parents will need to have this facility, unless the child is staying on one residence only.
These are clearly tasks that surpass those performed by the typical parent. Need of their performance has wider implications with respect to a highly vulnerable child’s bests interests that need to be accounted for in a parenting plan. For example, a child minder (babysitter) would need full and agreed upon training before the child could be left alone with them for any time at all.
Additional Resources:
A picture paints a thousand words. Wisonsin Hospital Website. 2017
Adams S, Cohen E, Mahant S, Friedman JN, Macculloch R, Nicholas DB.BMC Pediatr. 2013 Jan 19;13:10. doi: 10.1186/1471-2431-13-10.
Watt L, Dix D, Gulati S, Sung L, Klaassen RJ, Shaw NT, Klassen AF.Child Care Health Dev. 2013 Mar;39(2):185-93. doi: 10.1111/j.1365-2214.2011.01342.x. Epub 2011 Nov 9.
Care Mapping for Children with Complex Care Conditions or Disabilities. Complex Child Magazine. 2020.
https://complexchild.org/articles/2019-articles/august/care-mapping/
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Disclaimer: Nothing stated in the ‘Takes A Plan’ Blog (c) comprises legal advice. Consult a practicing lawyer in your province or terrtory if you are looking for legal advice on your matter.