together in a waterproof and fire-resistant container. Participants may fill out the workbook at the conference or schedule an appointment with CIL staff at a later time; CIL staff also assist new clients at the agency with preparing an emergency plan. Hunnefield stressed that emergency plans should cover a wide variety of situations and potential issues. For example, a person with a disability may be dependent on electricity due to their disability, and will need a plan if the power goes out. Families need plans for where to meet if separated during an emergency, and plans for getting animals, documents, medications, equipment, and other important items to safety. Vendors and presenters at the conference come from a wide variety of organizations, including government offices, health organizations, and disability rights advocates. Hunnefield shared the agenda from the most recent conference, which included sessions on:

• Hurricane Preparedness;
• Your Rights During a Disaster;
• Preventing Poisonings After Disasters;
• Fire Safety; and
• Disability Registration 911 System.

At the 2022 conference, participants could receive COVID-19 vaccines and boosters, which were incentivized with gift cards. In addition, participants received survival kits with three days’ worth of emergency supplies.

HEALTH AND EMERGENCY PLANNING FOR FAMILIES AND PROVIDERS

Emergency preparedness in the setting of healthcare is an essential tool for survival and for reducing unwanted outcomes, said Denise Nunez (UCLA Health Preventive Medicine). Nunez shared the details of a tool developed at UCLA to improve family resilience and their responses to emergencies, including pandemics. Having a plan in place can support immediate survival and promote a family’s ability to thrive after the emergency wanes, she said.

The Pandemic and Emergency Preparedness Guide for Families and Providers¹ includes a tool to create a tailored family plan that incorporates the individualized health needs for household members, and a review of local and national resources to support the plan. Nunez noted that families are not expected to have all the resources they need during an emergency, but are given the knowledge to reach out to the appropriate support systems as necessary. She shared snippets of the guide as examples of the types

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¹https://airpnetwork.ucla.edu/resources/community

of topics covered (Figure 7-1). A section on sensory disabilities suggests that families pack spare chargers, items to soothe, and tools to block stimulation. For patients who are hard of hearing, the guide lists pen and paper, battery-operated lanterns, and printed cards as potential items to include. The entire plan, said Nunez, is a decision-making process for the family in which they determine what is suitable and necessary for them. She stressed

that developing the emergency plan should be a collaboration between patients, families, and providers. This allows providers to promote healthy choices and reduce medical misinformation, and helps individuals not feel isolated in determining what decisions to make.

The emergency preparedness guide was developed to support families and to build family resilience. Nunez said that the guide helps to promote equity because it gives families with fewer resources the opportunity to plan ahead and to optimize their local resources. Additionally, it allows individuals with disabilities to be involved in the planning of their care, and to identify what resources and support they need in an emergency. Knowing where to turn and what to do in an emergency can be “incredibly empowering,” she said. Tools like the guide can be a low-resource way to educate providers and families about the importance of emergency planning, and to facilitate conversations and decision-making, before the next emergency strikes.

LESSONS LEARNED IN OREGON

As the parent of a child with disabilities, Leslie Rogers (Oregon Special Education Council and Universal Healthcare Task Force) said he is passionate about emergency disability planning. Rogers shared the work that has been done in Oregon to include the disabled community in emergency planning, and identified common sense policy solutions that could be enacted to improve care. In 2019, Oregon convened stakeholders from around the state to discuss how to conduct emergency planning in an inclusive way. The group’s efforts resulted in two reports: Beyond Checking Boxes,² and a workshop summary, entitled Oregon Inclusive Emergency Planning.³ In addition, the state put together a Disability Emergency Management Advisory Committee to hold ongoing discussions about the issues and identify solutions. COVID-19 derailed much of this work, said Rogers, but some of the changes and flexibilities that started during the pandemic made it possible to do what worked for these families.

Rogers identified several areas in which the system does not work for families with disabilities during emergencies, and ways that it could be improved. First, Medicaid and other payers often limit critical medical supplies to a 30-day supply. This policy leaves families running out at the end of every month, and emergencies such as fire, storms, and pandemics may leave them without the supplies they need. In order to build resiliency in

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²https://www.oregon.gov/dhs/EmergencyManagement/DEMACDocuments/Beyond-Checking-Boxes-Final-Report.pdf

³https://www.oregon.gov/dhs/EmergencyManagement/DEMACDocuments/Inclusive-Emergency-Planning-Workshop-Summary.pdf

families, Rogers said that families should be permitted to always have one month of supplies on hand, by providing two months in the first delivery. COVID-19 exposed the fact that just-in-time supply chains do not work for critical medical supplies or in emergency situations, he said. There is a need to create capacity for families to form their own resiliency, and policy changes are needed to do so. Another issue that COVID-19 exposed is the fragility of the caregiver workforce. Oregon, like other states, used Medicaid waivers to pay parent and family caregivers of children receiving home- and community-based services. The caregiver workforce was not sufficient before the pandemic, he said, and now it is far worse. Families of children with disabilities have unique needs and circumstances, and we need to maintain the payment flexibility that allows children to be cared for at home with their families. Finally, Rogers said that there is a need to create a more efficient communication system nationally to share the needs on the ground and the lessons learned. During the pandemic, there was “frantic outreach” to legislative staff about what families in Oregon needed; a better option would be a uniform reporting structure that utilizes local and regional councils.

LESSONS LEARNED IN TEXAS

Texas is the most “disastered” state in the U.S., said Laura Stough (Texas A&M University). This is in part due to its large size but also because of its extremely varied geography; Texas experiences disasters including floods, hail, tornados, fires, and hurricanes. Stough is the Assistant Director at the Center on Disability and Development at Texas A&M, this center developed the project Research and Education on Disability and Disaster (REDD). The mission of REDD is to conduct high-quality research and evaluation studies on how disasters affect individuals with disabilities and to provide research-based training, education, and outreach on the topic of disability and disaster for organizations, service providers, and individuals.

In March 2020, when the nation largely closed down, REDD put together a COVID-19 information list within about 36 hours, said Stough. This list included national, state, and local resources and information that was invaluable for people with disabilities, particularly in the early days of the pandemic. As the pandemic progressed, REDD created other resources, such as a guide to modifying CDC guidelines for people with disabilities. Stough noted that some people with disabilities may encounter barriers in understanding recommendations or being able to follow procedures. The guide listed accommodations for different types of disabilities; for example, Figure 7-2 lists accommodations that may be necessary for individuals with cognitive disabilities. This tool was given to the state health and human

services department for use by healthcare workers who were providing services to individuals with disabilities.

Another REDD product that was useful during the pandemic was the Directory of Community Resources for People with Disabilities.⁴ This directory contains over 2,000 services and resources in Texas, which can be searched for by resource type or zip code. In 2017, REDD used the directory to create a list of disability-related resources for Hurricane Harvey survivors, and in 2020, REDD used the same approach to create a list of COVID-19 resources and services. Stough said that having the information in place, and the template from a previous disaster, made it efficient to quickly scale up a guide for COVID-19.

Stough told workshop participants about a webinar that was held in May of 2020. The Association of University Centers on Disability (AUCD) hosted the webinar, and centers shared what they were doing in response to the pandemic. Stough said that nearly all centers had created online informational lists, many centers were connecting families and organizations together with emergency management and public health, and many centers were modifying current services so that they could provide continuity of support for children and families. This rapid ramping up of services and resources, said Stough, is an example of how the AUCD network functioned as an emergency preparedness network during the pandemic. There were a number of factors that led to the success of this work. AUCD centers had a history of working together around common issues, and there was a preexisting interconnected infrastructure. Centers had preexisting relationships with disability-related organizations, self-advocates, and families, as well as relationships with service providers and state agencies. Centers had local expertise in their own geographic area, and were able to quickly pivot and deliver pandemic-related information, support, and services. Finally, said Stough, centers had mechanisms for targeted distribution, such as newsletters and listservs. These strengths resulted in the ability to rapidly respond to the pandemic, and to modify programs and resources as the pandemic progressed.

DISCUSSION

Tassé led a discussion and reflection session with panelists, asking a series of guiding questions.

Based on your experiences, what are the essential components of creating an emergency plan?

Including kids in the development of an emergency plan is critical, said Hunnefield. Children need to know what emergency items (e.g., fire

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⁴https://dcr.tamu.edu/

extinguisher) look like, be able to visualize where they are located, and be able to practice the steps of evacuation plans. Particularly for children with cognitive disabilities, this type of visualization and repetition is essential, she said. Rogers agreed and said that it is important that all household members—including children and caregivers—practice emergency plans regularly so they know what to do. Stough noted that emergency preparedness is often focused on the initial response phase, for example, evacuation and sheltering. However, recovery is the longest phase of the disaster. It is important to think about how children and their families will reconnect with disability-related services, how disabilities will be accommodated in disaster services, and how the community will return to school and work. Emergency preparedness plans need to consider not only the immediate disaster, but the long-term recovery strategies.

What stakeholders who have not been typically involved in emergency planning need to be added to the conversation?

Key stakeholders include organizations that provide services to disabled youth, school districts, and specialty providers (e.g., deaf services), said Hunnefield. Stough added that special education teachers are a critical stakeholder to include; they have an incredible contribution to make during the immediate disaster response phase, as well as in connecting children and families with needed services during the recovery phase.

What is the role of Title V in working with public health agencies on emergency preparedness?

There tends to be a disconnect between public health and emergency management, said Stough. In an emergency, these two tracks need to come together. Rogers shared that in Oregon, there is a program called Cocoon Nursing that provides support for families coming out of the newborn intensive care unit or pediatric intensive care unit. This could be an ideal place to start the discussion about what to do in an emergency and begin the process of making a plan. Nunez added that attention to maternal and child health is essential in developing the strength of the family. Programs focused on maternal and child health (such as Title V agencies) are an ideal place to reinforce family structure, develop parenting skills, and allow families to feel strengthened and supported through communication and family building.

What is the most crucial funding need to ensure that children with disabilities are supported by emergency planning and able to respond to emergencies safely?

Funding from medical providers supports our annual conference and has been very important to our work, said Hunnefield. In the recovery phase

of an emergency, mental health programs for youth are a critical need, and should be funded. Nunez added that in this phase of the pandemic, there is a great opportunity to investigate what community programs have helped our families so that we can prioritize funding in those areas. Stough said that pushing funding down to the county level would be beneficial, as this is where emergency management and public health decisions are made. Rogers emphasized the need to continue the federal Medicaid matching funds after the Public Health Emergency ends. He noted that he is “terrified” of what will happen at that time, and that others around the country have shared their concerns. Federal funds are critical in order to stabilize services for children and families, he said.

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