Defining Functional Needs - Updating CMIST By June Isaacson Kailes Disability Policy ConsultantAug 20, 2017 -- Posted by :
CMIST History (communication, maintaining health, independence, support and safety, and transportation)
At a 2006 United States Health and Human Services, “Working Conference on Emergency Management and Individuals with Disabilities and the Elderly,” I proposed a function-based approach to include people with disabilities in emergency planning, response, and recovery. The intent was to accurately guide, and increase clarity regarding including the emergency needs of a large segment of the population in planning and service delivery. I explained this concept in a subsequent article, (Kailes, J., Enders, A., (2007) Moving Beyond “Special Needs”: A function-based framework for emergency management and planning. JDPS, 2007. 17: p. 230-237).
This functional approach considers the previous “special needs” framework ineffective because it did not provide specific guidance for operationalizing tasks required for effective and appropriate preparedness, planning and response. That is, inclusive of large numbers of people with disabilities and others with access and functional needs. In addition, in big disasters, functional needs can increase significantly when people acquire disabilities resulting from the event as well as when people with disabilities and others with access and functional needs do not have access to their devices, equipment, supplies, medications and the existing access customizations of their commonly used environments.
“Special needs” and terms referring broadly to impairments, medical labels, and diagnoses do not provide a structure for relating an individual’s characteristics, strengths, and capabilities to their specific functional needs. A function-based approach avoids generalizations and assumptions that are based on unhelpful medical labels. Functions look at the capabilities and the needs of the individual, not their diagnostic labels. Examples of these labels include multiple sclerosis, cerebral palsy, spinal cord injury, hard of hearing, legally blind, intellectual disability, developmental disability, dyslexic, autistic, alcoholic, and severe and persistent psychiatric conditions. The practice of using the term “special needs", and combining diverse groups together did a disservice to individuals representing more than 50% of the nation's population. It led to vague planning for physical access and effective communication and programmatic (services and accommodations) access. This practice resulted in response failures. It also disregarded the diverse disability communities’ repeated admonishments that “special needs” is an offensive term.
A plan based on optimizing function rather than “specialness” increases the chance of successful accommodation of predictable needs. The National Response Framework (NRF) endorses establishing a flexible framework to address broad and common functional needs (children, older adults, individuals who are transportation disadvantaged, and people with limited or no ability to speak or read English regardless of diagnosis, statuses, or labels. For example, the fact that a person has survived a stroke, tells us nothing about their functional needs for maintaining their health, safety and independence, which can range from no needs to many needs.
CMIST (Figure 1) is a memory tool to help people remember and plan for the five functional needs individuals may have in an emergency or disaster:
- maintaining health
- support, safety and Self-determination
The intent is to foster better understanding of who is included in the large numbers and diversity of people with disabilities and others with access and functional needs who need equal access, and to build competencies for emergency personnel in implementation of physical, programmatic and effective communication access accommodations.
The good news is CMIST was adopted by government. The bad news is this came with a price. Like all of emergency work, the CMIST framework is a work in progress. As its originator, I knew CMIST was an evolving concept that would require refinement and revisions as it was put into practice, tested and evaluated. Refinement of the framework became challenging after the federal government endorsed and adopted the CMIST framework and transitioned into governmental dogma. Unfortunately, this dogma which unfortunately doesn’t have an expiration or “refresh by” date. Specifically, when I revise CMIST content, I’m told “You can’t do that because FEMA says this.” I reply, “But I developed it,” and I'm told it doesn’t matter, no changes are allowed.
Setting dogmas aside, the terms have changed (Figure 1). Language evolves and the clarity, and specificity of our thinking and practice comes into clearer focus. It helps to shape the precision of our practice.
Safety and Support
In the updated CMIST (Figure 1) Supervision is replaced by Safety and Support and self-determination. This term is a more inclusive, as only a few people actually need supervision, such as people with dementia, young children, and prisoners, however most people do not need supervision. Safety and support incorporates supervision when needed. It also honors individuals’ rights to self-determination. Self-determination, means an individual retains their ability and opportunity to make choices and decisions, take risks, self-direct and exercise control over services and supports that are offered to them. A core value reflected here is that independent living does not mean doing everything without assistance, rather it is being in control of how, when, and what things are done, regardless of whether one uses the services and assistance of others.
Safety and support includes addressing individuals who may have lost the support of assistants; attendants; family; or friends; or may find it difficult to cope in new or strange environments. For example, if separated from their caregivers, pre-school-age and some school-age children and some individuals with autism or intellectual disabilities, may be unable to identify themselves to facility managers and other emergency response personnel. When in danger, they may lack the ability to assess their situation and react appropriately and/or effectively.
People with safety and support needs may also include some who have significant difficulty understanding and/or remembering information and directions vital to their well-being during sheltering, evacuation, etc.). This can include people who experience confusion, and disorientation.
The safety and support needs of individuals should be determined on a case by case basis to avoid making assumptions about individuals’ capabilities. For example, many people with severe and persistent mental illness may be able to function well, while others require more protective support.
In Figure 1, the term Medical is changed to Maintaining Health, which is a more inclusive need than a medical need. The intent is to move away from viewing disability in the context of medical care. People are not sick because they live with disability. However, when you examine society’s terms associated with disability, it is understandable why disability is often mistakenly and inaccurately associated with sickness and medical needs. Society has adopted the medical care reimbursement language for items that some people with disabilities commonly use to maintain their health and independence. For instance, mobility devices are referred to as durable medical equipment. Technology used by some individuals with disabilities, is referred to as assistive technology. Supplies get referred to as consumable medical supplies. This reinforces a medical model of disability versus the disability communities’ preferred social model of disability. For example, people whose disability is multiple sclerosis (MS) or people who have had a stroke are often referred to as MS patients, or stroke patients, etc. They, like everyone else, only take on a “patient status” during the very limited time when they are actively being seen, face to face, by a medical professional. Use of the medical model continues to deny that health and disability co-exist. And people who live with chronic conditions (not illness) can also be healthy.
As Dr. Richard H. Carmona, past U.S. Surgeon General, would say “Disability is not an illness. The concept of health means the same for persons with or without disabilities: achieving and sustaining an optimal wellness — both physical and mental — that promotes a fullness of life.”
The false belief that most people with disabilities are going to need medical services and medical care unnecessarily overburdens scarce emergency medical resources. This assumption needs to be replaced with the practice of determining and meeting actual health-maintenance related needs. This includes replacing medications, essential equipment, mobility equipment or supplies.
In today’s world, most people with chronic and complex conditions live in the community. Some rely on multiple essential medications; use supplies (paddings, bandages, catheters, waste containers, nasal/gastrointestinal tubes, nebulizers, and equipment such as wheelchairs, walkers, canes, crutches, suctioning machines, respirators, oxygen, and CPAP machines (Continuous positive airway pressure therapy used to help a people who have obstructive sleep apnea breathe more easily during sleep).
Many people can adequately handle their health maintenance needs, or do so with some support. People who normally receive health support (dialysis, chemo therapy and other infusion therapies) can do well in general population shelters if their health maintenance needs are met. They may, for example, simply need help to get to infusion centers and / or having access to replacement medications, supplies and equipment.
People who need acute medical services should be evaluated by qualified medical professionals on a case by case basis. This may include those:
- with unstable or contagious health condition,
- with conditions that require ongoing acute medical treatment, or
- who must have dependable (uninterrupted) operating power for equipment to sustain life.
Unless individuals require acute medical care typically provided only in a hospital; stabilization, treatment and a dependable power source can all be provided in a community setting, leaving the limited resources of acute medical care facilities to people who need to be hospitalized.
Communication access addresses the needs of individuals who need assistance, with the receipt of information they can understand and use due to hearing, vision, speech, cognitive, or intellectual disability, and/or limited or no ability to read or speak English. During an emergency, people with communication accessibility needs may not be able to hear verbal announcements; see and/or read scrolling text or directional signs; or understand how to protect themselves or get assistance.
Giving information in ways that can be understood and used also entails use of accessible web pages and the posting of accessible messages using social media (See Note 1). This includes the continual use of redundant and multiple methods for communicating information, such as:
- Announce it
- Describe it
- Caption it
- Picture it
- E-mail it
- Relay it
- Share it
- Tweet it
- Text it
- Post it
- Interpret it (language & sign)
- Repeat it (frequently)
In emergencies, many people have transportation needs because of lack of access to personal transportation; need for accessible vehicles/transport (due to mobility disabilities, age, and temporary conditions and injuries; and driving restrictions. Wheelchair-accessible transportation (vehicles that are lift or ramp equipped) is a critical element that must be factored in to the planning for and allocation of emergency evacuation resources. This support includes public information on how to access accessible transportation during an evacuation.
Figure 2 visually reflects the latest thinking and revisions for the CMIST model. Independence is the overarching goal, the steady state that an individual wants to maintain in an emergency. This is addressed by planning for meeting needs related to:
- usable and understandable communication,
- transportation and evacuation,
- maintaining health, and
- safety, support and self-determination.
These functional needs can and do overlap.
Independence is a level of function. If it cannot be maintained at a pre-disaster level, it should be optimized to the greatest extent possible to ensure an individual's health and safety. Independence is represented by a large center gear, surrounded by four linked gears representing functional needs: communication, transportation, safety support, self-determination and health.
CMIST is not dogma, but an evolving concept and work in progress. The author email@example.com welcomes and encourages feedback.
Permission is granted to copy and distribute this article provided that:
1. Proper copyright notice and citation is attached to each copy;
2. No alterations are made to the contents of the document;
3. Document is not sold for profit; and
4. June Isaacson Kailes, Disability Policy Consultant is notified of such use, please contact firstname.lastname@example.org
Note 1 Website and Social Media Access
Improving the Accessibility of Social Media in Government covers agencies’ responsibilities to ensure that digital services are accessible to all people, individuals with disabilities. Includes recommendations for improving accessibility of social media, tips for making: Facebook posts accessible, Tweets accessible, YouTube videos accessible; and resources, training, and how to provide feedback (2013)
Section 508 of the Rehabilitation Act requires access to electronic and information technology procured by Federal agencies.
Web Accessibility Initiative (WAI) Web provides strategies, guidelines, resources to make the Web accessible to people with disabilities
Accessible Web Site Design (provided by the University of Washington’s Disabilities, Opportunities, Internetworking, and Technology Center)
Checklist for Integrating People with Disabilities and Others with Access and Functional Needs into Emergency Planning, Response & Recovery, 2014 Format: PDF
For emergency planners, managers, responders, and public information officers (PIOs) who have responsibility for developing, maintaining, testing, delivering and revising emergency plans and services. Use it to help:
- Evaluate current capacity of critical elements that integrate people with disabilities and others with access and functional needs into emergency planning, response, and recovery.
- Identify areas needing attention
- Set priorities
- Assess progress
- Develop inclusive emergency plans, policies, processes, protocols, training, job aids/checklists, standard operating procedures and exercise programs.
- Periodically evaluate progress and identify elements that have been implemented, and areas that continue to need attention.
© 2017 Edition 1.0