Month: June 2017

Getting Ready for Emergencies

three circles with symbols for a medical case, a house, and a heartI am a patient advocate for people with medical problems and disabilities. It is important for people with medical needs and disabilities to plan for emergencies. When a disaster strikes, rescue workers may not be able to reach everyone who needs help. People with disabilities who are not rescued may have more trouble than other people.

Do you know what you and your family need to stay safe in an emergency?

Storms, loss of electric power, floods, fires, and other problems can cause special issues for people with disabilities. A few years ago, Hurricane Sandy hit New York. Thousands of people lost power, or were stuck in their houses. Some of those people had disabilities and other special needs. Rescue squads could not help them for many days. These people had no electric power, medical supplies, or clean food and water. Some of the people with medical problems became very sick. These people became so ill, they had go to the hospital when they were rescued.

Medical workers learned an important lesson from this: people with disabilities need special help to get ready for emergencies.

Below are tips to help people with disabilities plan for disasters and emergencies:

First, answer these questions:

  1. How many people living with you need special medical help, or have a disability? For each person with special needs:
    1. Write down, or have someone write, a list of medications. List meds like insulin, seizure pills, or pain meds.
    2. List medical machines. Include feeding pumps or IV pumps. List oxygen and breathing machines.
    3. List supplies like urine catheters, ostomy bags, or central line supplies.
    4. List wheelchairs, canes, and walkers, too.
    5. Are there any service animals? Count them as well!
  1. If your house or building loses power, can you still get what you need?
    1. How long can your machines run before they have to be plugged in?
    2. How long do your medications last if they can’t stay cold in your fridge?
    3. Write down or tell someone the number of hours you can be safe with no electric power. This is important to know!
  1. Can you leave your house or building without special help?
    1. If you live in a building with stairs, can you get out if the elevators do not work?
    2. Does someone in your house have a car? Can you or the person with a disability ride in that car? Can a friend or relative come and get you?
    3. If you cannot ride in a car, or don’t have one, write that down. During a crisis, travel on trains, buses, or taxis may not be possible.
  1. If you have to leave your home or building, where will you go?
    1. Where is your local shelter? You can call your town hall to find out.
    2. Ask them: Is the shelter handicap accessible?
    3. Where is the closest hospital with an Emergency Room?

After you answer these questions, you can plan for an emergency.

If you may get stuck in your house in an emergency, you must make a careful plan. First, try to buy a machine to make electricity if the power goes out. It is called a generator. It can be found at stores like Home Depot. You may need help with money for a generator. They can be costly.

 Here are some people who may help you get a generator:

  1. If you live in an apartment, ask your landlord to help.
  2. Call your department of developmental services to ask for help.
  3. Ask your electric company.
  4. Ask your fire station.
  5. If you use a breathing machine or medical pumps, your medical company may be able to help.

All of these people may know of special money the state or city has to help you buy a generator.

Next, call your power company.

  1. Tell them you are a person with a disability or medical needs.
  2. Tell them you need electric power to stay safe.
  3. Ask how they can help you in an emergency.

They may be able to fix power lines to your home faster. They may put your name on a list of people to help first.

Then, call your Fire Station.

Many fire stations keep lists of people who have special needs. They want to know if you may be stuck in your house during a crisis.

  1. Call your closest fire station.
  2. Tell them you have medical needs or a disability.
  3. Ask how they can help you in a crisis.

If the fire station knows you are a person with a disability, they may be able to send rescue workers to your house faster.

Getting Ready at Home.

Put together important information you will need in an emergency.

  1. Make a list of important information
    1. Write your doctors’ names and phone numbers
    2. List all of your medications.
    3. List special machines you use like wheelchairs, feeding pumps, or breathing machines.
  2. Put a copy of this paper on your fridge.
  3. Put a copy in a folder near your phone.
  4. Make a copy for your car if you have one.
  5. Make a copy for a special “go” bag to take with you in a crisis.

Make a “GO” bag:

A “GO” bag is a special bag with supplies you will need to stay safe in an emergency. Here is how to make one:

  1. Find a large bag or backpack.
  2. Put in all of the medical supplies you need to be safe for three days.
    1. Include items like urine supplies, and ostomy bags.
    2. If you use medical pumps, put in bags and tubing for each pump.
    3. Put in tubing for any breathing machines you use.
    4. Put in any special bandages and dressings you need.
    5. Put in extra batteries for your machines.
  3.  Next, add three days of extra medication to your bag.
  4. Add three days of special foods you use, like medical formula.
  5. If you have a service animal, put in food for them too!
  6. Next, put three days of extra clothing in the bag.
  7. Last, put in a copy of the paper with your doctor’s numbers, medications, and list of your special machines.

Decide where you will go.

If you leave your house or are rescued in an emergency, where will you stay? Every city has buildings set up for emergencies. They are called shelters. Often, shelters are schools, churches, or city buildings in your neighborhood.

  1. Call your city and ask where to find the shelter near you.
  2. Find out if that shelter has a generator to make electricity.
  3. Ask if it can keep medical machines running.
  4. Ask if they can keep special medications cold?
  5. Will they take a service animal, if you have one?
  6. Can a wheelchair get into the building?

 

If your nearby shelter cannot keep you safe, ask your city if they have a special shelter for people with disabilities. If not, go to the closest hospital with an ER. All hospitals have generators to make power. They can keep you safe.

More information:

  • The State of Massachusetts has other tips to help you with emergencies.

Go to: www.readysafehealthy.org

  • The Boston Public Health Commission can also give you tips.

Call: (617)534-5395

  • DURING AN EMERGENCY, the Massachusetts Service Center can give you information.

Call: +211

“Girls with Autism Are Good at Hiding it”

As of 2012, autism can be found in 1 in 68 children. 1 It was noticed that boys are more diagnosed than girls (1 girl to every 4-5 boys). 1 Is autism really more common in boys than colorful drawingof a girls headgirls? Or are we missing autism in girls?

Autism in girls can be hard to see. Girls with problems dealing with people can be seen as shy. They may live for years without knowing they have autism. This delays diagnosis and treatment.  Boys are noted earlier than girls by 2 years.

Most of the time, a child with autism has problems dealing with people, and has repetitive behavior. Girls are aware of these problems but they are good at hiding them. Girls with autism want to deal with people, but don’t know how. They may start copying what others do. ‘They pretend to be normal’. 2 Girls with autism get tired from copying. “It is like math all the time”.2

Unlike boys, girls don’t flap their hands or jump all the time. They may not play with wheels of cars or trucks.  These are other reasons for the delay in diagnosis.

Some teen girls love numbers and focus on their weight. They start counting every food they eat. This may end up having an eating problem. An eating problem may be a ‘face’ of autism in girls. Girls with an eating problem and girls with autism have similarities. They are both rigid, love details, and hate changes.  Some children with autism are picky eaters with a strict diet.

Autistics can’t read between lines. Girls miss that someone is creepy. They are more at risk for abuse and taken advantage of.

Girls with autism want to make friends. They play with regular toys (dolls or Barbie). They have fewer behavioral problems. They have fewer repetitive moves. They are more at risk for feeling down or worried. They are more at risk for abuse  

Girl with autism will need special help. Girls benefit from social groups that teach them how to:

  • take care of themselves;
  • be appropriate when dealing with people;
  • make friends; and
  • protect themselves from abuse. 3

If you would like to read more about this topic:

  1. http://www.cdc.gov/ncbddd/autism/data.html
  2. Journal of Autism and Developmental Disorders October 2016, Volume 46, Issue 10, pp 3281–3294, The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype Authors: Sarah Bargiela, Robyn Steward, William Mandy , http://link.springer.com/article/10.1007/s10803-016-2872-8
  3. Autism—It’s Different in Girls. New research suggests the disorder often looks different in females, many of whom are being misdiagnosed and missing out on the support they need by Maia Szalavitz on March 2016, https://www.scientificamerican.com/article/autism-it-s-different-in-girls/
  4. Attention Finally Being Paid to Girls at Risk of AutismSomer L. Bishop, PhDaJeremy Veenstra-Vander Weele, MDb, , Stephan J. Sanders, MD, PhDa,  http://www.jaacap.com/article/S0890-8567(16)00008-3/abstract
  5. Autism Behaviors May Differ in Boys and Girls. Study also found gender differences in brain of children with the disorder. By Tara Haelle, https://consumer.healthday.com/cognitive-health-information-26/autism-news-51/autism-behaviors-may-be-different-in-boys-and-girls-702957.html