Created by the National Research Center for Parents with Disabilities in collaboration with the Partnership for Inclusive Disaster Strategies.
This page features common questions disabled parents have about preparing for a disaster. It features questions that arose from attendees of a webinar we hosted on this issue.
The page is broken into sections by topic. Click on a topic below to read more information on that area.
If you have additional questions or resources to add, please email us at CenterForParents@Brandeis.edu.
Contents:
- Durable Medical Equipment, Medicine, and Oxygen
- Policy Challenges, Legal Issues, and Community Impacts
- Communication Issues
- Specific Disability Needs
- Specific Geographic Areas
- Children and Schools
- Evacuation and Sheltering in Place
- Kits and Supplies
- Obligations
- Resources for Further Information
- Webinar Links
Durable Medical Equipment, Medicine, and Oxygen
Are there rules that require pharmacies to provide a backup supply of medications to a disabled parent when the supply chain is disrupted by a disaster?
There are no such rules, but during previous larger disasters, the bigger chain pharmacies, such as CVS and Walgreens, have demonstrated their commitment to the needs of their customers during disasters. Many/most can do what is called a vacation override to provide a one-time refill, with the expectation that a disaster survivor will reconnect as quickly as possible to their local providers. In federally declared disasters, there are programs that may be activated for the replacement of medications, but they are only offered to people who have no health insurance.
There may be state-specific options, such as in Texas, where pharmacists have discretion to provide a 30-day refill if the doctor who prescribed the medication can’t be reached to authorize a refill. https://disabilityrightstx.org/en/handout/medications-and-disasters/#:~:text=Pharmacist%20discretion,30%2Dday%20refill.
There are Medicaid flexibilities allowed to states:
- Temporarily suspend or increase limits on prescription drug fills, and refills and dispensing signature requirements,
- Temporarily make exceptions to the published Preferred Drug List (for use in the case of drug shortages),
- Modify prior authorization requirements for prescription drugs.
- Managed Care: early prescription refills and/or extended length of refills
For people with Medicare drug coverage (Part D):
- Find another in-network pharmacy.
- Replace lost, damaged, or left-behind medications.
- Use an out-of-network pharmacy if needed.
- Get a 60- or 90-day supply.
https://www.medicare.gov/publications/11377-getting-care-and-drugs-in-a-disaster-or-emergency.pdf
Federally Qualified Health Centers (FQHC) may also be able to help with medication replacement. FQHCs are federally funded nonprofit health centers or clinics that serve medically underserved areas and populations. FQHCs provide primary care services regardless of one’s ability to pay.
How do you store extra medications, especially for someone who is chronically ill?
It is generally accepted that trying to save up extra medications is almost impossible.
That’s why it’s so important to talk with your healthcare provider or pharmacist ahead of time about what options may exist. Ask if your prescription can be written for a 90-day supply instead of 30, or whether early refills are possible under your insurance plan. Your provider may be able to submit a note that the medication is needed for emergency preparedness.
In an event where there is notice, such as a tropical storm or hurricane, contact your healthcare team to discuss the potential need for having extra medications on hand.
How can disabled parents better prepare for power outages and get portable oxygen?
Please see the discussion about generators and power backup systems below.
For portable oxygen options, contact your healthcare team.
For many of us, our durable medical equipment is essential. How can we get it taken care of or replaced in an emergency/disaster situation?
In the past, FEMA has reimbursed for durable medical equipment through its Individual Assistance program. We don't know if this program will continue.
The American Red Cross can provide loaner equipment until healthcare insurance/Medicare/Medicaid claims can be processed for a permanent replacement. Sometimes, Centers for Independent Living or other disability organizations have equipment banks to replace disaster-damaged equipment.
Policy Challenges, Legal Issues, and Community Impacts
For parents with disabilities, what are the systemic accessibility barriers or failures in disaster preparedness, response, and recovery?
For parents with disabilities, systemic barriers show up in every phase of disaster. Preparedness often fails by excluding disabled parents from planning, communication, and exercises. During response, shelters and relief services frequently lack accessible facilities, child care supports, or transportation options. In recovery, programs like housing assistance and case management are often inaccessible, and families face heightened risks of institutionalization or separation when systems don’t recognize disabled parents’ rights and access needs. These failures compound, denying disabled families the equal opportunity to prepare, survive, and rebuild after disaster.
What should I do as a disabled parent if Child Protective Services comes to investigate my competence as a parent while I am staying in a disaster shelter?
Many, if not all, disabled parents have experienced fear that the state will find a way to remove their child(ren) because of their parent’s disability. Always be clear that you have the same rights as parents without disabilities to parent your children. Authorities cannot remove your children solely for not being adequately prepared for disasters (although disaster preparation is recommended), any more than they can remove custody from a non-disabled parent.
If you are concerned or if child protective services has been contacted, you can contact your state protection and advocacy office or seek out legal aid. More resources about legal aid are available on the National Research Center for Parents with Disabilities website.
What are the most critical policy changes needed to ensure disabled parents are included in all stages of emergency planning?
The answer to this is somewhat subjective, but to start, consistently providing physically accessible meeting spaces, shelters, sign language interpreters, providing materials in accessible format, and providing accessible transportation in all stages of disasters, including planning, is essential to inclusive emergency planning. Although required, these are not always provided.
As a parent with a disability, I've been advocating for including people with disabilities in local, county, and state planning to have disaster drills and exercises that are inclusive of parents with disabilities. There is quite a bit of resistance. What can I do to get this to happen? I've been trying for over 20 years. And there is nobody to complain to because it starts at the very top, where they don't follow these things at the state level.
Every community is different. Keep showing up for meetings and making your voice heard. Invite staff and consumers from your local center for independent living to attend with you. Contact the Partnership for Inclusive Disaster Strategies at info@disasterstrategies.org, we may be able to reach out and offer the emergency management agency our support to serve the whole community by including people with disabilities in their efforts.
How can we get our local, county, and State Emergency Management officials to include parents with disabilities in their plans and drills?
As much as possible, be at the planning table and advocate first that there be extensive planning with the whole community, including parents with disabilities. Contribute your lived experience to exercises and drills. Advocate that planners include parents with disabilities in the drills and exercises. No one, including people with disabilities, should ever simulate having a disability.
What are some of the best ways to act as an ally for parents with disabilities and advocate for the whole community in these situations?
Ask disabled parents and disabled parent groups what you can do to be an ally, then follow through with what is requested.
I work with state health agencies. What is the one thing each of you would want agency staff to know about the needs of parents with disabilities in disasters?
We want public health to understand that people with all types of disabilities are parents at a degree equal to people without disabilities. They need access to all disaster-related programs and services. This means that all disaster-related programs, such as planning meetings, drills, notification, sheltering, etc., must:
- provide materials in an accessible format;
- provide sign language interpreters or video remote interpreting, when that is equally effective;
- provide accessible transportation when it is offered to people without disabilities;
- be located in physically accessible spaces;
- admit; and
- make reasonable modifications to policies, practices, and procedures as necessary.
How can we better encourage preparedness for parents with disabilities?
It is important to talk about preparedness as a year-round process. It takes time and money to build a kit for sheltering in place, and a go-bag for evacuating to a shelter, hotel, or a friend’s or family member’s home. Watch for community preparedness events, with giveaways of emergency items such as first aid kits, weather radios, and flashlights. Check garage/yard/tag sales for used items in good condition. Check with your recycling center, if you have one, as some may have a “reuse program” for used items at no charge. Consider organizing a neighborhood swap meet. Look online for seasonal sales on emergency supplies and other items you want to include in your emergency kit and/or go-bag.
The Partnership has hazard-specific Disaster Tips and other Disaster Resources for people with disabilities.
How can disabled parents work with first responders and build relationships with them?
The best way is to get involved with disaster planning in your community. Attend public planning meetings and committee meetings and share your subject matter expertise.
You can also visit your local fire and emergency management agency. Get to know those local first responders. Tell them where you live, let them know of any issues you may have with getting out of your home, but be aware, this is not a guarantee that they will be there to rescue you.
What small steps can be taken by disabled parents to organize in our local community?
Connect with disability-led groups such as Centers for Independent Living (CILs) who may be working on disaster preparedness and other aspects of emergency management. If they are not involved, you can encourage them to do this.
Get involved with state, territorial, tribal, county, or city/town emergency management. If needed, ask them to bring in disabled subject matter experts to provide training.
If your child is active in girl scouts, boy scouts, campfire, 4H, or faith-based youth groups, ask leaders to consider a project on inclusive emergency preparedness. Invite local disability leaders who are subject matter experts to be involved. When there are no youth who identify as having a disability already involved in the groups involved, invite youth with disabilities to participate. Also, consider inviting them to join the group if it interests them.
If you are not yet a member, join the local PTA and request that they consider an activity, event, or project centered around inclusive emergency preparedness. Invite local disability leaders who are subject matter experts to be involved.
Communication
Are there disaster preparedness resources for parents with disabilities in languages other than English? What about sign language, including ASL?
Ready.gov offers all of its resources in English and Spanish, and some are available in Arabic, French, Haitian Creole, Hindi, Japanese, Korean, Portuguese, Russian, Tagalog, Vietnamese, and Simplified Chinese.
The American Red Cross has an American Sign Language Resource Hub, with hazard-specific information.
How should disabled parents best communicate their needs to emergency management (EM) services?
Be part of the planning process and be sure to include training by disabled subject matter experts during the planning process. Make sure that EM understands its obligations to provide effective communication to disabled people, and this includes providing sign language interpreters and material in an accessible format. While it is never too late to form relationships with EM prior to a disaster, it is best to initiate relationships prior to a disaster.
Learn about your and your child's rights to communication access prior to a disaster, and be assertive about your rights if communication access services are not provided.
Specific Disability Needs
How can you prepare people with various types of disabilities for a disaster?
Rather than focusing on a specific disability, it is best practice to train EM staff, including shelter workers, to meet the needs of any individual with a disability. This involves listening to the person and working with them to develop a solution. Asking questions such as “How can I be the most helpful?” or “What do you need right now to feel safe and supported?” is a good place to begin. It is also critical that environments are physically accessible, provide material in an accessible format, provide sign language interpreters, provide quiet spaces in disaster shelters, and meet other requirements.
Specific Geographic Areas
What is the best way to assist parents with disabilities in rural areas with no financial assistance?
As part of your preparedness planning, consider reaching out to the Association of Programs for Rural Independent Living (APRIL). APRIL can provide planning and preparedness information focused on rural/remote areas.
FEMA and Red Cross have online options for applying for financial assistance in a federally declared disaster. If you are having difficulty with the application process, you may want to talk to your local Center for Independent Living (CIL). Your local CIL may also be able to support the disabled parent through the process.
It is also valuable to build an ongoing relationship with your county emergency management agency so that local officials understand the specific needs of disabled parents before a disaster strikes.
Could you provide a list of resources for parents with disabilities in Texas, Delaware, Maryland, and Virginia, coastal and rural communities, and others affected by recent disasters?
Disasters occur locally, and each one is different. Please visit FEMA’s list of current disaster declarations. When you have located your disaster declaration, click on the link to learn about response and recovery resources at the federal, local, and state levels. You can also access news and press releases, fact sheets, and more.
The Partnership also has a national Disability and Disaster Hotline (800.626.4959) that connects callers with local resources.
Children and Schools
How do you get cooperation from teens during an evacuation? How do you take past trauma from these situations into planning?
Give teens agency in their preparation by allowing them to decide which items should be placed in their emergency kits or go-bags. Consider tasking them with the next household disaster exercise. Also, invite them to make a list of items that should be included in the family's go-bag for pets. Some teens may want to prepare with one or more friends over pizza or snacks. Suggest that they read disaster tips so they can make informed decisions.
As part of the disaster planning process, advocate that emergency responders and shelter staff, including volunteers, are provided with trauma-informed training led by disabled subject matter experts.
What suggestions do you have to help children who may resist during an evacuation?
See above. Also, conduct drills and practice exercises with children with disabilities in school and at home so that they grow comfortable with the process.
What processes are in place for non-speaking children to reunite with their parent or guardian?
Different locations will use different processes. As a parent, you may wish to place your contact information in your child’s backpack or pocket. Make sure that your child has their communication devices, laptop, tablet, and speech synthesizer with them. Practice with your child what they might do if you are separated, if this is feasible.
If we get displaced from a disaster, how can we help make our kids feel safe and hopefully prevent meltdowns in a new place?
Bring items that are familiar to your child that will make them feel comfortable and safe. Make sure your go-bag has your child’s favorite comfort items, fidget toys, small games, or books. Also, pack familiar non-perishable snacks and drinks. Ask your child what things they would most like to have with them if they had to be away overnight.
Have honest, age appropriate conversations with your child about the possibility of disasters and the best ways that your family can stay safe. Keep your child informed about what is happening and where you are going, and when you might be leaving. If you can, model calm behavior that communicates that the situation is serious but that you will be with them. If you have pets, reassure them that you will do everything you can to keep them safe.
Are there resources on how to include access needs for a child during an emergency in their 504 plan? What should be included in that plan? Should there be a question about any plans the school may have in place to move my child to safety before first responders arrive?
An IEP/504 can address evacuation and sheltering in place. Include in your child’s IEP or 504 plan that your child fully participates in drills for fires, lockdowns, and other emergencies, and that any necessary modifications are provided.
Will the presence or use of a go-bag or emergency kit violate any school rules? Can exceptions be made in their 504 plan or other plan for inclusion/access?
Each school will have different policies. Discuss this with them in an IEP or 504 plan meeting.
Some schools are beginning to have restrictions on the use and presence of cell phones for students. In the case of a school shooting or other emergency, how will information be shared with parents? Will my student be able to get access to their phone during such an event, and what is the plan to do so?
School districts and individual schools have different rules regarding cell phone use. Check with your school. If you have concerns, bring this up during your child’s IEP or 504 plan meeting.
How can an IEP include disaster preparedness planning?
In the IEP, include goals about knowing how to evacuate the school building in an emergency. Include in the IEP plan that evacuation is regularly practiced. Note: these exercises should extend well beyond the typical fire drill and have elements of situations that could arise in an emergency, such as exits or stairwells that are typically used being blocked, key staff being absent that day, etc.
Also include goals as feasible in the IEP or 504 plan that the student understands their own evacuation process, such as using an evacuation chair, and that they are able to direct adults when necessary.
How do parents with disabilities get schools to plan for disasters in a way that accounts for disabled parents and staff as well as students with disabilities? Many of the schools in my school district don’t even have accessible alarm systems.
Ask your school district to get training from disabled subject matter experts. Remind schools that in addition to students they have an obligation to protect disabled staff, parents, and visitors to the schools during disasters and emergencies. There should be planning, including drills and exercises, and this should include people with disabilities.
In addition, all buildings are required to have visual fire alarms.
Evacuation and Sheltering in Place
Some families are not able to leave home during the disaster. What steps should we take to shelter in place?
If you are under a mandatory evacuation order, authorities cannot make you leave your home. Consider what you will do if power is interrupted for more than a few hours, water is not safe to drink, or flood waters, wildfire smoke, or chemical toxins enter your home. First responders will not be available during the active part of the disaster, and may not be able to get to your home when search and rescue efforts begin. Be aware, too, that many jurisdictions have explored in the past recent years a non-congregate sheltering model, where evacuees are housed in hotels. You can also ask for a hotel room as a modification of congregate sheltering. The important thing is to consider all the options available to you.
If you decide to shelter-in-place, you will need in your emergency kit:
- Water — one gallon per person per day for at least 2–3 days (preferably 10–14 days), for drinking, personal use.
- If you have pets, service animals, and/or emotional support animals, think about how much water they drink on a daily basis, and add gallons of water to your kit as needed.
- Fill bathtubs with water for flushing toilets, in case your public or private (well, cistern, septic tank) water system is affected by the disaster.
- Consider using disposable plates, bowls, cups, and utensils to conserve your supply of water.
- Food — non-perishable food items that don’t require refrigeration or cooking with power-dependent appliances. You’ll need enough for 2–3 days (preferably 10–14 days) for each person in your household. Consider your family’s food and snack preferences, and look for items that come in a can, pouch, jar, or package:
- Tuna, salmon, chicken, ham
- Vegetables and fruits
- Crackers
- Nut butters
- Non-refrigerated juices and milks available on grocery store shelves in boxes, pouches, or cans
- Packaged snacks, like peanut butter or cheese on crackers
- Shelf-stable meals and Meals Ready to Eat (MREs) are available at stores such as camping/outdoor, sporting goods, and military surplus. You may want to consider buying a camp stove to increase your food options. A word of caution about MREs: they may be very high in fat, sodium, and calories due to their intended use by soldiers while on exercises and missions.
- You’ll need a hand-operated can opener. There are models available that use batteries, good for avoiding repetitive motion injuries.
- If you are breastfeeding, La Leche League USA has advice on breastfeeding and storing breast milk in disasters and emergencies.
- Ready.gov has more information on what to include in your emergency kit and go-bags.
- Points of distribution (PODs) and feeding routes begin operating once the impacted area has been deemed safe. If you follow a particular diet, such as gluten free, low-sugar/low carbohydrates, cultural- or religion-based, you can request these options for shelf-stable packaged meals and prepared hot meals.
Many parents with disabilities don't drive or don’t have a vehicle. How can we best plan for evacuation?
If you use your local paratransit services, talk with them about how they provide services in a disaster. Plan for evacuation transportation with your support network. Contact your local emergency management agency and let them know about your needs in a disaster, and ask for what options/services they offer you need to know about to support you and your family evacuate safely.
How do you evacuate multiple individuals with disabilities during a fire?
Every structure and every fire is different, so it’s best to discuss this with your local fire and emergency services departments. Ask if they will come to your home to assess the layout and help you make an evacuation plan. They may be able to help you practice your plan.
The American Red Cross has a program called Sound the Alarm, in which they will provide the same type of service, assessing your home and helping you develop a plan to evacuate. They will also install smoke detectors, including some with visual and audio indicators.
How can you help family members calling for help during an emergency/wellness check option?
At the beginning of a disaster, 911 systems are often overwhelmed. If you can, find the non-emergency line for your local Police Department/Sheriff’s Department. You will likely have to leave a message, but as volunteers deploy, they should contact you with an update on your loved one.
Kits and Supplies
What is the most important thing to think about when preparing an emergency kit?
The most important thing is to tailor your kit to your and your family’s needs. It’s also important to think about any power equipment you use or medications that may need to be refrigerated. What will you do if the power goes out?
What are some important medical documents to have in a watertight bag? (Medication, doctors information, etc.)
Include a list of your healthcare team members and their contact information, any home and community-based service providers, a list of your medication and dosage, and anything else you feel will be important to share with people you may encounter in your disaster journey, including a lease or deed. It’s also important to have all of these documents available electronically on your phone or other device.
Should every disabled parent have a generator?
Sometimes people with disabilities assume they require a generator. Your first question should be “Is a generator the best option for my family and me?” We suggest that you consider the following as you decide.
Generators:
- Are not always the best solution
- Cannot be used in apartments
- Can be dangerous when not properly used
- Are not affordable for many people, including maintenance and fueling
If you decide that you want a generator, then you need to decide if you want a whole-house generator, which is safer and easier to maintain. They are much more expensive than a portable generator. The down side of portable generators is that they have less capacity, are less safe, and require someone to do frequent refueling. All generators are expensive, and we are not aware of public resources to assist with their purchase.
Battery backup systems are an alternative to consider:
- Battery backup systems store electricity for later use, rather than generating it, and are rechargeable. They are less expensive than a whole-house generator and may be less expensive than a portable generator.
- Most home backup batteries recharge using a standard wall outlet, while some options are available that recharge via EV adaptors (only use approved adaptors), or solar panels.
- Portable home power stations include Yeti and EcoFlow.
There may be some states with tax benefits to assist with this cost.
Where can parents with disabilities obtain no or low-cost safety items for their homes? Such as water leak detectors, CO2 alarms, etc.?
The Red Cross has a Sound the Alarm program that provides installation of free smoke detectors.
We are unaware of specific programs for water leak detectors. You may want to contact your homeowners/renters insurance company, if you have one, and also your local, state, and county government offices, your power company, and watch for home shows and other community events where these items might be available. Some localities offer services that notify you if they notice a significant water use change, check with your local water department if they offer similar services.
Is there government or other assistance to provide emergency supplies to parents with disabilities?
Your city, county, state, or territory government and non-government organizations may receive grant funding to provide assistance with emergency supplies. Community organizations may hold preparedness events to distribute things like weather radios, flashlights, batteries, sand bags, and other emergency supplies. As you identify disaster- and emergency-focused organizations, sign up to receive information from them, like newsletters, notification of events, or other information they share.
Obligations
Are disaster shelters required to provide a hospital bed for a parent with a disability in a shelter?
Yes, disaster shelters must provide a hospital bed if requested. They can also accommodate individuals who request other sleeping options, such as a recliner, pressure mat (like an egg crate mattress topper), etc.
Resources for Further Information
Are there any specific handouts we could share with families?
There are no specific handouts other than this page, which will soon be available for downloading and printing, but these websites contain many resources for emergency preparedness and inclusive planning:
The Partnership for Inclusive Disaster Strategies:- Disaster Tips
- Disaster Resources
- Disability & Disaster Hotline:
- Call/Text: +1 (800) 626-4959
- Email: hotline@disasterstrategies.org
- Ready.gov
- American Red Cross: How to Prepare for Emergencies
- FEMA
The National Research Center for Parents with Disabilities
Download or print this page: (Accessible PDF available soon)
Webinar Links
Disaster Preparedness for Parents with Disabilities webinar:
The above resource page was created by the National Research Center for Parents with Disabilities in collaboration with the Partnership for Inclusive Disaster Strategies.
