Vigilance is Critical to Independence:
Emergency Preparedness for People with Disabilities
On the heels of disastrous flooding in Colorado, many in America are reminded once again of the value and importance of being prepared for the unforeseen or unexpected. This is especially true for the 56 million people with disabilities who live in the US (almost 20% of the population). Many of these individuals rely on additional assistance or medical supplies throughout the day to maintain their physical and/or mental well-being. Medical needs vary greatly and can range from individuals with diabetes who require insulin to high-level paralyzed individuals who are completely dependent and rely on around-the-clock 24-hour personal care services, possibly a ventilator depending on their pulmonary strength or condition, urological supplies such as catheters, and a range of mobility devices including an electric wheelchair and transferring equipment. To add to the complexity of the situation, a whopping 48.3% of Americans recorded currently taking prescription medication, and for a conservative measurement, if you were to only consider those taking prescription medications to treat long-term or chronic conditions it still encompasses 34% or about one in every three Americans.
Considering the facts, emergency managers around the country should take very seriously the reality that there is no one-size-fits-all approach to preparing for a catastrophe. Fortunately, there are a handful of federal laws covering the integration of care for individuals with disabilities in the emergency management process, but the reaction on the ground and the implementation and enforcement of these laws has been anything but rapid. The Federal Emergency Management Agency commonly referred to as FEMA, as well as state and local governments are responsible for having plans in place to be prepared to accommodate for the diverse needs of their community. The Department of Justice guidance to governments agencies for adhering to the Americans with Disabilities Act of 1990 and other federal disability laws (1988 Stafford Act, 1988 Fair Housing Act Amendments, 1973 Rehabilitation Act, 1975 Individuals with Disabilities Education Act, 1996 Telecommunications Act, and 1968 Architectural Barriers Act) applies to a wide range of emergency management policy and procedures including: preparation, notification, evacuation and transportation, shelter, first aid and medical services, temporary lodging and housing, transitioning back into the community, cleanup, and other disaster related programs, services, and activities. Each of the above laws provides for affirmative obligations and prohibits discrimination on the basis of disability, and therefore means that any State or Local government (or contractors) providing services below such standards is in violation of federal law. Violations may include but are not limited to: physically inaccessible shelters, failing to provide communications or information material in alternative format (American Sign Language, close captioning, Braille etc.) or prohibiting services based on someone’s use or reliance on a service animal.
The Office of Disability Integration and Coordination or ODIC is the accommodations and compliance arm of FEMA whose stated mission is, “in accordance with federal civil rights laws and regulations, provide guidance, tools, methods and strategies to integrate and coordinate emergency management inclusive of individuals with access and functional needs”. The US is divided into 10 geographic regions, all of which employ a Regional Disability Integration Specialist (RDIS) responsible for coordinating and informing state and local emergency managers on disability integration policy. New York and New Jersey make up Region II under the coordination of James Flemming, who is the region’s RDIS (James.firstname.lastname@example.org).
The purpose of this article is not to teach you what to expect but to simply make clear what the obligations of the government are, to accommodate and provide access to all in the least restrictive setting possible as required under the law, so that you may have a clear expectation of how services should be provided if and when necessary. That said, do not wait and expect for all your needs to be met by an outside entity greeting you at the door when catastrophe strikes. There are numerous things individuals can and should do now to prepare themselves for the future. Not only is preparing for an emergency smart but it empowers individuals to take control and allows them the critical role of determining the trajectory of their future. If you or a family member have a disability, below are a list of things you can do to prepare for an emergency so that you and your loved ones are not left relying on outside help when the time to act comes and the time for preparation has already passed.
- Stock a basic disaster supply kit.
- Inventory what you use every day to live independently. Identify the essential things that you will need to be able to survive for 3 to 5 days or longer, if people cannot get to you.
- Stock these custom essentials in your kit. For example, your kit may contain items such as durable medical equipment, assistive technology, food for special diets, prescription medicines, diabetic supplies, hearing aids and batteries, a TTY, manual wheelchair, and supplies for a service animal.
- Create a Support Network Plan how you will contact your family members by calling, or emailing, or texting agreed upon friends or relatives if you’re unable to contact each other directly. Let people in your support network know of your emergency plans. Tell them where you keep your emergency supplies. They may be able to assist you in ensuring that your assistive devices will go with you if you have to evacuate your home.
- Collect Important Information and Phone Numbers. Keep a list of contacts, including family, and friends and list the best way to reach them in an emergency. Keep a list of the local non-profit or community-based organizations that could provide assistance. Maintain a list of phone numbers for your doctors, pharmacy, and the medical facilities you use. Make copies of medical prescriptions and doctors’ orders for assistive devices that you use. List where you got the devices from and see if your local pharmacy is willing to provide a list of your prescription medicine and devices for you. Make copies of medical insurance cards, Medicare or Medicaid cards, physicians’ contact information, a list of your allergies, and your health history.
- Plan for Possible Evacuation. During an emergency, be ready to explain to first responders and emergency officials that you need to evacuate and choose to go to a shelter with your family, service animal, caregiver, personal assistant, and your assistive technology devices.Note that people should only be referred to a medical shelter when they have acute health care needs and would typically be admitted to a hospital.
- Plan for Power Outages Before They Happen. Before disaster strikes, you may register with your power company. They may alert you when power will be restored in an unplanned outage and before a planned outage. In the event that you cannot be without power, plan for how you will have power backup. If possible, have backup battery, generator or alternate electrical resources.
(go to http://www.ready.gov/individuals-access-functional-needs for more tips and information)