Effective disaster response and recovery involves the whole community. In the United States, there is a wide variation as to how families acquire durable medical equipment (DME) for their children with disabilities post disaster. DME is essential for those children to maintain their usual level of independence as well as their health and well-being. The absence of established process that enables children with disabilities to access DME is a significant gap in preparedness plans.
In 2020, the Americans with Disabilities Act (ADA) reached the 30-year milestone since its passage. However, despite its introduction, recent hurricanes have overwhelmed community residents affected by storm surge, high winds, and debris. People with disabilities are 2-4 times more likely to die or be injured in a disaster than a non-disabled person. For children, this inequity gap is even larger. Emergency managers as well as hospital and public health officials are often called upon to assist the public in acquiring services and resources needed post disaster. Children with disabilities are at greater adverse risk for post-disaster side effects, and they often require services and support beyond the needs of the general public. Families with children with disabilities routinely require DME on short notice to maintain their usual level of independence and to preserve their health and well-being. The provision of DME for children with disabilities is not mandated for the strategic national stockpile, which exacerbates the hardship of disasters.
In 2019, children (age 0-17 years) accounted for 22% of the U.S. total population. Approximately one-fifth of children have a special healthcare need and children require additional attention in order to lessen negative consequences during and following a disaster. Emergency managers are often called upon to assist survivors in acquiring resources needed post disaster and, therefore, both families and emergency mangers can benefit from knowing the process of acquiring DME for children.
Recognizing and restoring the functional needs of children with disabilities early maintains their independence and success in mass shelters. Thus, effectively meeting these children’s needs prevents secondary complications after a disaster. Disaster planning by families with children with disabilities is important as these children are at greater adverse risk for post-disaster side effects and often require services and support beyond the needs of the general public. Parental maintenance of a list of assistive devices and equipment make and model information will assist replacement should a child become separated from their essential aids as well as support emergency managers in securing replacement supplies for their facility-level stockpile.
Common Durable Medical Equipment Used by Children
Children with disabilities depend on assistive equipment, mobility aids (wheelchairs, walkers, canes, crutches), or DME (commode chair, hospital bed, oxygen equipment). Wheelchairs are the most commonly needed equipment.
As public health emergencies can happen anywhere and at any time, it is important to have medical equipment and supplies easily accessible and available to be rapidly obtained for children with limited mobility. Children have unique medical needs and are not simply small adults. Post disaster, it is important that children with disabilities acquire “right-sized” functional equipment to allow healing, prevent injury, and maintain independence.
Up-to-date information on disability-related resources will assist emergency managers in developing plans and procedures that integrate resources for at-risk populations. Each state and major city has a repository of emergency medicines and supplies to address threats (e.g., injuries to natural disasters). However, DME resources are not cataloged or listed in repositories drafted by state and local emergency managers.
Aiding families with children with disabilities to acquire DME and consumable medical supplies after a disaster requires awareness of the resources at the county, municipality, city, state, and national levels. DME and assistive technology can be acquired by Medicaid depending on one’s state Medicaid sub-program. In addition, certain medical products and supplies can be acquired through the Strategic National Stockpile (SNS), under Health and Human Services, Assistant Secretary of Preparedness and Response (ASPR). However, the SNS is mainly pharmaceuticals. The Federal Emergency Management Agency (FEMA) has a commonly used sheltering items and services listing (CUSI-SL) catalogue to acquire durable medical equipment and consumable medical supplies. In addition, the American Red Cross and other nonprofit agencies may have resources available.
The Challenges of Finding DME After a Disaster
Surviving a disaster is difficult for all. Children who are not ambulatory and experience a flood, hurricane, or other natural disaster often experience trauma as they need to rely on others to remove them from hazardous conditions. They may be moved to short-term dwellings or shelters, often with their DME left behind. It can take time to acquire critical equipment and replacement supplies before they are able to get back to a normal routine.
Historically, state, and local emergency plans have rarely included children and disability status into disaster planning. However, emergency managers may be asked to disseminate disaster-related information to these families in a cost- and time-efficient manner. Federal, state, and local government may have a memorandum of understanding in place with the private or nonprofit sector or a multi-agency partnership. Acquiring DMEs can be a very intensive process that includes multiple steps to acquire resources from FEMA, Medicaid, ASPR, and other nonprofit and private organizations.
Although there are multiple companies and foundations that manufacture or purchase DMEs for children, there is no coordinated national resource list, which impedes rapid identification of available DME to address the needs of children with mobility limitations during an emergency response. In addition, because some of the required DME might be lost and require replacement, resources are needed to help families navigate public and private insurance requirements to secure approval for prompt replacement equipment.
Donated adult-sized wheelchairs for children during the first week of recovery may be all that is available. However, in order to reduce secondary hardships, children need properly sized equipment. An expedited process to address response gaps for this population during the response and recovery phases of the disaster cycle are needed. These can include planning assistance to help these families remain in their homes rather than evacuating to a conventional shelter or temporary housing.
Better facilitation and greater coordination are needed to address ever-evolving challenges. Greater coordination between emergency managers and other nonprofit advocacy groups may help integrate the needs of children into every stage of emergency planning and increase awareness of how to more rapidly acquire needed supplies and equipment. One resource is the partnership for Inclusive Disaster Strategies, a leading U.S. disability-led organization with a focused mission on equal access, disability rights, and full inclusion of people with disabilities, older adults, and people with access and functional needs before, during, and after disasters and emergencies.
It is difficult to predict DME needs as demand for such equipment may be limited, and privacy regulations make a registry problematic. ASPR and Centers for Medicare and Medicaid Services (CMS) partnered to create the HHS emPOWER Program to leverage CMS billing data to inform emergency planning. However, the project does not yet represent children since it only includes Medicare data and not Medicaid. Although ASPR does not have access to state’s Medicaid data, ASPR is able to train each state on how to download this data via the emPOWERing State Medicaid and CHIP Data Pilot Project to support local entities emergency planning for children on DME. Having access to Medicaid data will better protect the health of children on DME that may require assistance after a disaster. Further, there are challenges between widely distributed repositories and access and maintenance of a central store to allow swift deployment of DME when and where needed. Similarly, most state Medicaid agencies do not have their own stockpile in place but rather work closely with local vendors and have back-up suppliers if necessary.
In New York, during Superstorm Sandy, New York City Emergency Management (NYC EM) acquired donated DME to support people in shelters and liaised with community organizations to address the needs of people with functional disabilities during disasters. In some cases, the people affected by a disaster would typically evacuate with their DME. However, if it was necessary to obtain additional supplies, NYC EM would work with local organizations.
Recently, the New Mexico Department of Health (DOH), New Mexico Governor’s Commission on Disability created a statewide disability, access, and functional needs community engagement and collaboration network to achieve greater inclusive emergency and disaster planning. The group contains many disability specific agencies like the New Mexico Commission for Deaf and Hard-of-Hearing, Commission for the Blind, rehabilitation services, and others like the state’s Human Services Department and Children, Youth and Families Department, tribal partners, as well as nongovernmental organizations like nonprofits and private entities. The multidisciplinary collaborative group hosts meetings twice a week to discuss and address barriers impacting equal access during COVID-19 and all-hazard disaster information particularly relevant to the disability community. The group also coordinates information related to procuring and maintaining DME in disasters, through its DOH Medicaid Home and Community-Based Services waiver program that provides DME and other services to qualifying individuals both before and after disasters.
Children are all too often overlooked in disaster planning efforts, which can amplify their vulnerability when disaster strikes. DME that are necessary for restoring status quo in daily life may require continued cross-sector partnership between service providers and vendors post disaster to help children acquire services and support needed.
Marsha Williams is senior director of Healthcare Facilities and Medically Vulnerable Populations Unit, New York City Department of Health and Mental Hygiene, Office of Emergency Preparedness and Response. In this capacity, she oversees the federal National Hospital Preparedness Program (HPP) grant funding for planning and response among NYC-based healthcare coalitions and facilities, including non-acute care such as nursing homes, adult care facilities and primary care settings, as well as medically vulnerable populations (dialysis, pediatrics). She received her BA from Colgate University and her MPH from Tulane University School of Public Health and Tropical Medicine.
Judy Kruger, Ph.D., is an associate professor at Emory University in the Gangarosa Department of Environmental Health, Rollins School of Public Health. She is a certified business continuity professional (CBCP) and a certified emergency manager with Georgia Emergency Management and Homeland Security (GA CEM). She has responded to several national disasters and is a crisis coach, preparing business and industry leaders for business continuity and disaster response and recovery. She can be reached at firstname.lastname@example.org
Eli Fresquez is assistant general counsel of the State of New Mexico Department of Children, Youth (CYFD) and Families & Emergency Support Function 6. At CYFD, he provides legal counsel in various service areas including supporting strategic planning for services to children with disabilities. Previously, he worked at the New York City Mayor’s Office for People with Disabilities and at the New York State Division of Human Rights. He holds a JD from New York Law School and two BAs from the University of New Mexico. He is a certified ADA coordinator from the University of Missouri-College of Human and Environmental Sciences/Architectural Studies and the Great Plains ADA Center.
Eric J. McNulty
Eric J. McNulty is associate director of the National Preparedness Leadership Initiative (NPLI). Leonard J. Marcus is the NPLI’s founding co-director. They are two of the co-authors of a new book on leadership: You’re It: Crisis, Change, and How to Lead When it Matters Most (PublicAffairs, June 2019). The NPLI is a joint program of the Harvard T.H. Chan School of Public Health and the Center for Public Leadership at the Harvard John F. Kennedy School of Government.