The purpose of this project is to provide a framework for life care plan costing. At the May 2017 Life Care Planning Summit, chaired by the Life Care Planning Section of the International Association of Rehabilitation Professionals (IARP), an agreement was reached by summit attendees that there was a need to develop a document to guide life care planners in presenting life care plan costs. The definition of a life care plan, which uses life care planning standards of practice as the basis of the life care planning process, inherently includes cost identification.

A life care plan is a dynamic document based upon published standards of practice, comprehensive assessment, data analysis, and research, which provides an organized concise plan for current and future needs with associated costs, for individuals who have experienced catastrophic injury or have chronic health care needs. (NARPPS, 1998).

The goal of the life care plan is to proactively prevent complications, maximize function and independence, and enhance quality of life. Costs in a life care plan should address these goals and be sufficient to meet the needs of the client or evaluee. Needs rather than funding sources drive the planning process (Deutsch & Reid, 2004, Chapter 5, p. 6).

Life Care Planning Summits

Since 2000, life care planning summits have been held to help life care planners explore the current state and future direction of life care planning and achieve consensus on topics relevant to the practice of life care planning. The 10th Life Care Planning Summit was held in 2017 with the goal to further define “associated costs,” part of the definition of a life care plan. Summitt attendees reached the following agreement with respect to costing:

“Life care planners shall develop a position statement (white paper) regarding the presentation of charges and/or costs presented in the life care plan that provides guidance to life care planners for the variety of uses and jurisdictional requirements encountered by life care planners. The paper must take into consideration that “associated costs” are referenced in the definition of a life care plan, and ensure the current geographically relevant monetary charges for a good and service in the life care plan.” (Johnson et al., 2023, p. 38).

The 2022 Summit Planning Committee took up this charge in a multi-stage process. Initially, a Life Care Plan Costing Technique Survey was available from November 9, 2021, to December 21, 2021, with 264 responses. Next, the quantitative data from this survey was analyzed and results were presented at the 2022 Summit, attended by 160 life care planners in Dallas, Texas. Following the presentation of the survey results, summit attendees participated in focus groups using the Top Hat platform. Summit participants were asked questions regarding costing techniques during two electronic survey sessions. The first survey session addressed the strengths and challenges associated with four costing techniques: telephone calls, paid databases, free/open access databases, and medical bills. The second survey session addressed the use of these costing techniques during testimony. The final stage of this process was the creation of a peer-reviewed article, which was published by Johnson et al. (2023) in the Journal of Life Care Planning.

At the end of the 2022 Life Care Planning Summit, participants expressed the need for the development of a Costing Framework to assist life care planners with costing guidance and decision-making. The Costing Framework would identify variables to be considered in making cost decisions, the circumstances when the variables are relevant, and the pros and cons of using or not using the variables. It was acknowledged that a Costing Framework should allow for flexibility, as no single technique fits all situations. The Summit Planning Committee assigned Dana Penilton and Laura Woodard to co-chair this project, which they named the Costing Framework Development Project.

Costing Framework

The goal in developing a Costing Framework is to educate and guide life care planners in understanding and applying costing techniques accepted in the life care planning field to life care plan recommendations. This Costing Framework is not designed to describe a specific step-by-step method for researching costs. Within the life care planning community, it is recognized that various costing techniques may be appropriate for different elements of a life care plan and that life care planners must utilize their clinical judgment to determine and defend their costing strategies when researching associated costs. Each professional will develop their techniques, but life care planners must adhere to the basic tenets and methodologies of the life care planning process. (Deutsch & Reid, 2004, Chapter 5). The practice of life care planning is an evolving field, and the Costing Framework is also intended to evolve, reflecting the impact of multiple factors on the specialty practice of life care planning and cost research.

The Costing Framework was developed with the understanding that life care plans are used in litigation. Given the rules for expert admissibility, life care planners must ensure that their costing methodology is reliable and generally accepted in the scientific community. Life care planning standards of practice also require life care planners to use a valid and reliable approach to assessing costs. Thus, the information provided in the Costing Framework is intended to facilitate expert testimony. Furthermore, this Costing Framework ensures that the costing performed by life care planners in other venues is also collected and analyzed using a scientific, reliable, and valid process generally accepted in the life care planning community.

Content of Chapters

The following chapters outline a review of foundational documents, peer-reviewed literature, and other materials related to costing which support the Costing Framework. Additionally, an analysis of the data collected from the 2021 Costing Technique Survey, the Top Hat platform used by participants at the 2022 Life Care Planning Summit, and discussions held during the summit are presented. A costing matrix is introduced to describe types of cost sources and considerations for use. Lastly, term definitions related to costing and categorized resources are provided to further assist life care planners with defining and defending their costing methodology.