June is Myasthenia Gravis Awareness Month

How To Get Personal Care Assistance in Emergency Shelters

A new federal program provides personal care aides for individuals with disabilities stranded in emergency shelters during a declared disaster

Wildfires, windstorms and floods have been in the news regularly this year. What if such a disaster suddenly hit your neighborhood? Would you be prepared? 

Planning ahead for emergency situations is especially important for people who have disabilities that affect mobility and self-care. You are in the best position to plan for your own safety and well-being since you know your functional abilities and needs best. But where do you begin?

First, assess what you will be able to do for yourself and what assistance you may need before, during and after a disaster.  Among the important needs to consider is personal care. Do you regularly need help with toileting, bathing, grooming and dressing? How will you handle these needs during an emergency.

Personal care assistance at emergency shelters

If you’re ordered to evacuate your home, it’s most ideal to have your personal care assistant go with you. If your assistant comes from an agency, ask whether the agency would make special provisions to provide you with services at another location such as an emergency shelter.  

If not, personal care assistance is available for people with disabilities at emergency shelters through local, state and federally funded programs.

The newest of these programs is funded by the Federal Emergency Management Agency (FEMA). This year, FEMA awarded contracts to two organizations, Dynamic Service Solutions Inc. and ResCare, to provide personal assistance services (PAS) for individuals in emergency shelters and other congregate facilities who require this assistance to maintain the same level of independence as they have at home. The FEMA PAS services are available only if the president has declared a state of emergency or major disaster.

The PAS contract provides two levels of support: basic personal care, such as grooming, eating, bathing, toileting, dressing, walking, transferring, and maintaining health and safety; and higher level care, including changing dressings on wounds, administering medications and injections, catheterization and respiratory care.

Your key contact — the emergency shelter manager

At an emergency facility, the emergency shelter manager is the only person who can make requests for personal assistance services on your behalf. 

You can expect the manager to be aware of the services funded through local and state resources. However, since the FEMA PAS contracts are so new, shelter managers may not be completely familiar with the availability of these federally funded services. Be prepared to provide them with this information.

Getting personal assistance services

The process for getting personal assistance services at an emergency shelter begins when you first arrive. You will be asked to complete registration and health assessment forms, which the shelter manager and health services staff will use to identify and validate your need for PAS.

To request these services for you, the emergency shelter manager must begin at the local level by contacting the county office of emergency management. If PAS staff can’t be provided at the local level, the county will contact the state emergency management agency. The state will either deploy PAS staff to your shelter location or — if a presidential declaration of major disaster or emergency has been made — the state may request FEMA to provide services through the PAS contract.

You can expect a personal care assistant to arrive at the shelter within 24 hours of the request. If you need help in the meantime, ask the health services staff at the shelter for assistance.

Tap other emergency assistance programs

Other special assistance programs may be available to you in the event of an emergency. Many communities ask people with disabilities to register with the local police or fire department or local emergency management office so help can be provided quickly in an emergency. If you depend on electricity to run medical equipment, be sure to register with your local utility company as well.

Individuals who require accessible transportation should work with their local paratransit and disability service providers to make an emergency plan.

Disaster planning — action checklist

Make sure you have a personal support network to help you prepare for and deal with a disaster. Your network should include people you trust — relatives, neighbors, friends, co-workers — who can check to see if you need assistance. They should know your capabilities and needs, and be able to provide help within minutes if necessary.

The American Red Cross partners with FEMA, as well as local and state emergency management agencies, to staff emergency shelters and provide disaster relief. Consider this action checklist developed by these two organizations when planning ahead for an emergency:

  • Learn what to do in case of power outages. Know how to connect and start a backup power supply for essential medical equipment. Consider obtaining and learning how to use a generator for home use and carrying a charger when away from home, especially when loss of power may jeopardize health or safety.
  • Consider getting a medical alert system that will allow you to call for help if you are immobilized in an emergency.
  • Have a cell phone with an extra battery. Store your emergency contact numbers in the cell phone.
  • Maintain an adequate supply of medications you take and copies of your prescriptions.
  • Arrange for more than one person from your personal support network to check on you in an emergency.
  • Make sure you have at least two accessible escape routes from your home.
  • Be prepared for specific hazards that could impact your community. For example, when a tornado strikes, people are advised to take shelter in the basement, but most basements are not wheelchair accessible. Determine in advance an alternative shelter and how you will get there. 
  • Learn the location of emergency shelters in your community. Find out which ones are accessible to those with physical disabilities. Confirm upon arrival that the shelter can meet your special care needs.
  • Work with local emergency management to ensure that your service dog will be admitted to shelters during emergencies (as required by law). Make sure your emergency kit supplies include food and other items for your service animal. Be aware that pets other than services animals usually are not permitted in emergency shelters for health reasons.

For more information

Mobile Resources

The FEMA app (free smartphone app for mobile devices) contains a map with shelters and FEMA Disaster Recovery Centers, disaster safety tips, and interactive lists for storing your emergency kit and meeting location information.

FEMA Text Message Updates:

  • To sign up for monthly preparedness tips: text PREPARE to 43362 (4FEMA)
  • To search for shelters or Disaster Recovery Centers (DRCs):   
    • Text SHELTER and a ZIP Code to 43362 (4FEMA)
    • Text DRC and a ZIP Code to 43362 (4FEMA)

The Red Cross hurricane app provides a variety of features, including alerts, weather conditions and locations of open Red Cross shelters. It also will inform far-away friends and family of your weather alerts, and an “I’m safe” button enables an easy social media update of your status. The free app can be found in the Apple Store and the Google Play store for Android by searching for "American Red Cross."

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.

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