Month: April 2021

Categories
Awareness

Plan to Stay Safe

Firemen
Image by Matthias Groeneveld from Pixabay

What words come to mind when you read the following list: earthquakes, floods, hurricanes, tornados, tsunamis, volcanoes, wildfires, winter storms? I think of danger, death, and destruction. But on April 30, National PrepareAthon! Day, we can plan so that death is not a consequence of any of these disasters.

Thankfully we don’t have to plan for every kind of disaster where we live. But we do need to be aware of, and ready for, potential hazards in our locale. The first step is to be informed when disaster is imminent. Signing up for emergency phone alerts gives us life-saving information targeted to our area.

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This emergency alert system will also broadcast on TV and radio. But a battery-powered or hand crank radio and a NOAA Weather Radio with tone alert are essential when the power goes out.

Safety should drive our decision whether to shelter in place or evacuate. Follow advice of emergency management officials on this one. For example, if your home is built to withstand hurricane force winds, it’s okay to hunker down behind shuttered windows. But don’t wait until the last minute to ask someone for help with your shutters. They’ll be too busy with their own place and you’ll be left blowing in the wind.

If your home can’t be made safe, decide whether you’ll evacuate to family or friends in a safe area or go to a general population shelter. Check in advance which one works for your disability and plan how you’ll get there. Do you have enough gas in the car? If you don’t have a vehicle and need accessible transportation to a shelter, make sure you’re on the manifest for a ride in an emergency. If you have medical equipment that requires electricity and you don’t have a generator at home, plan on going to a special needs shelter where you can stay connected to a power source. Find out if pre-registration is required. Those dependent on dialysis or other life-sustaining treatment need to find out where they should go.

If evacuation is ordered, learn the evacuation routes. Safeguard important and valuable papers, including model numbers and providers of assistive technologies so it can be replaced if lost or destroyed. Withdraw some cash.

Update your emergency supply kit, both at home and in the car, that includes water, nonperishable people and animal food, first aid supplies, and Bible. This is critical for survival if you lose power or get stranded in your car.

If separated from family during an emergency, know how you’ll contact one another afterwards. Establish a family meeting place that’s easy to find. Create phone contact lists for family members so you can text them with your location. Help rescue workers reach your loved ones if you’re incapacitated; type “ICE,” the acronym for “in case of emergency,” before a person’s name in your cell phone so they know who to call.

So how far along are you in your emergency planning? Procrastination could be a costly mistake.

This post highlights FEMA guidance at https://www.ready.gov/plan and should be consulted for other important details. Also see Emergency Management. National Council on Disability, accessed April 20, 2021. https://ncd.gov/policy/emergency-management and An ADA Guide for Local Governments. Making Community Emergency Preparedness and Response Programs Accessible to People with Disabilities, accessed April 20, 2021. https://www.ada.gov/emergencyprepguide.htm

Categories
Accessibility Medical

Tackling Inaccessible Medical Equipment

Cornea Diagnostic Equipment
Cornea Scanner

In 2020, I had eye surgeries to remove cataracts, implant intraocular lenses, and remove scar tissue that developed behind each implant. I enjoyed throwing out my old contact lenses and donating my eye glasses to charity. But the inaccessible medical equipment challenged my independence.

After 45 years of regular eye doctor visits, I was accustomed to being unable to reach ophthalmic diagnostic equipment. Typically, I gained the extra inches needed by stepping up onto a phone book. However, this simple solution was unavailable during my 12 pre- and post-op visits. Besides, who has phone books anymore?

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I rejected the step stool staff offered explaining that my knees don’t bend and I couldn’t step onto it. Not ready to give up my independence, I also vetoed staff lifting me onto the stool. I chose to stand on reams of copy paper to gain additional height. Success. What I didn’t know was that we weren’t done.

Next was the cornea scanner. But copy paper wasn’t enough to elevate me to this machine and there was no escaping a stool. Yet I still insisted on accessing the equipment without being lifted. Fearing my fall, staff hovered close by as I used reams of copy paper to create a small step next to the stool and from there swing my leg up onto the stool. Independence maintained.

A couple of months later, I was challenged by an Ophthalmic Yag Laser System at the outpatient surgery center. The equipment accomplished two things: removing the unwanted membrane behind my lens implants and infringing on my independent access. None of my prior strategies got me high enough. I had no choice but to allow the surgeon to lift me onto a chair. But before doing so, I checked if he had a back problem and disclosed my weight. He assured me that he lifted weights way heavier than me in the gym.

Laser Surgery Machine
Laser Surgery Machine

After the procedure, I kicked into advocacy mode. Not everyone has a surgeon who can lift weights heavier than their patients. And what about wheelchair users who can’t stand on the floor let alone a chair? Because the surgeon has a financial interest in the surgery center, I put him on notice that I would be calling on him in the future to be pro-active in ordering accessible medical equipment. Documentation with photos, laid the groundwork for my communication with the manufacturer.

I later learned that the Architectural and Transportation Barriers Compliance Board had issued technical criteria for medical diagnostic equipment (MDE) to be accessible to, and independently usable by, patients with disabilities, to the maximum extent possible. Although the MDE Appendix to 36 CFR Part 1195  has been effective since February 8, 2017, it cannot be enforced because authorities like the United States Departments of Justice (DOJ) and Health and Human Services (HHS) have not adopted the MDE Standards as mandatory requirements for entities subject to their jurisdiction.

Does anyone hear the call to advocate for making accessible MDE mandatory? What’s your experience with MDE?

For additional reading, see Standards for Accessible MDE. A Rule by the Access Board January 9, 2017, accessed on April 15, 2021. https://www.federalregister.gov/documents/2017/01/09/2016-31186/standards-for-accessible-medical-diagnostic-equipment and “Access To Medical Care For Individuals With Mobility Disabilities.” United States DOJ and HHS 2010, accessed on April 15, 2021.  https://www.ada.gov/medcare_mobility_ta/medcare_ta.htm.

Categories
Celebrations

Celebrate the Gift of Siblings

Siblings Farewell Sydney

Over two-thirds of Americans have at least one sibling. The relationship is one of the most important and usually the longest in a person’s life—typically longer than with parents, spouses, or children. So let’s celebrate our brothers and sisters on April 10, #NationalSiblingsDay.

To the outside world, we all grow old. But not to brothers and sisters. We know each other as we always were. We know each other’s hearts. We share private family jokes. We remember family feuds and secrets, family griefs and joys. We live outside the touch of time.

Clara Ortega

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The siblings of people with dwarfism and disability are especially worthy of praise. As children, many siblings endure more public attention than they want and less attention from parents than they need. Parents love them just as much but, at times, the medical and other needs of their sibling with a disability are all consuming. To cap it off, siblings are often assigned extra duties to help out their brother or sister.

When I was writing “Dwarfs Don’t Live in Doll Houses,” the 1988 memoir of my childhood and young adult years, I asked my brother, Greg, and sister, Deborah, what it was like growing up with me.  Here are some of their reflections:

 It used to make me mad when people stared at you.

I received [a] bloody nose at school from Terry for teasing me about you. . . we had a fight and I came out second best.

It used to annoy me when people fussed over you, knowing that you thought them silly as well. . . but that kind of attention I never wanted anyway.

As for their response to being asked to do things for me—like carry my sun chair down to the beach or my book bag home from school—their recollections varied from annoyance to wincing when watching me carry a bag half my size. For the most part, I was independent and my disability wasn’t on their minds. “At home, I was the older sister and that’s how things were – just that.”

We enjoyed a happy childhood together in New Zealand, but as adults lived with our spouses in Australia and America. Despite the long distance, we continued to share our love and concern for each other. We have traveled thousands of miles to vacation together in all three countries. When visiting in the homes of my siblings, they made accommodations for Robert and I to be independent in the bathroom and kitchen.

As we have grown older and less mobile, Greg and Deborah have pushed wheelchairs, lifted scooters, and helped us up many stairs. In recent years, we have celebrated decade birthdays together with the destination chosen by the one with the birthday. Our 50th birthdays took us to Sydney, Australia; Key West, Florida; and Whangamata, New Zealand; our 60th birthdays were in North Carolina, New York, and Hawaii.

Why wait for your sibling’s birthday? Celebrate them his week. Share how much they mean to you.

For more of my writings, subscribe to my weekly blog at https://angelamuirvanetten.com/ Used print books of Dwarfs Don’t Live in Doll Houses are available on Amazon.com; an e-book is coming soon. 

Categories
Awareness

Shine Blue on Autism in April

Visual communication board

“People with Autism Spectrum Disorder (ASD) are like salt-water fish who are forced to live in freshwater. They are fine if you just put them into the right environment. When the person with ASD and the environment match, the problems go away and they even thrive. When the environments don’t match, they seem disabled.” Humphrey (2008).

Language impairment, social deficits, repetitive behaviors, sleep issues, gastrointestinal disorders, and anxiety are characteristics of ASD: 40% are nonverbal; 70% have average to above average IQ scores.

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For the families affected by autism, each day can be an adventure in uncertainty:

  • Will Johnny have a meltdown at school forcing mom to take off work again?
  • Will Max make it through a quick stop at the grocery store or will he scream down the aisles?
  • Should we pay for Suzie’s therapy or buy Christmas presents?

The Hope Center for Autism in Stuart, Florida is a public charter school that helps families navigate these adventures. Parents entrust their children to staff dedicated to supporting sensory, communication, and self-management needs in preparation for a successful life.

“Children with autism are colorful, they are often very beautiful, and like the rainbow they stand out.” Adele Devine

One Hope Center staff member dreamed of working with ASD kids as far back as eighth grade, others saw it as a stepping stone to gain pediatric experience before graduating to working with adults. But after several years at the Hope Center, staff no longer see their jobs as temporary. They fell in love with the children, found their calling, and can’t imagine doing anything else. Excited to go to work every morning, they leave every day feeling part of a big, connected community.

“If they can’t learn the way we teach, we teach them the way they learn.” O. Ivar Lovaas

“Autism makes you listen louder. It makes you pay attention to an emotional level as well as an intellectual level.” Jace King

“Adapting our own perception, following rather than leading and building bridges are all keys to helping the child with Autism learn.” Adele Devine

Hope Center days are filled with learning, fun, and energy. Staff do things a little differently and adapt to change in unique ways:

  • Incorporate blue, the favorite color.
  • Use a picture symbol vocabulary board with every lesson.
  • Use fidget toys.
  • Sing skip counting songs.
  • Bond with and earn student trust.

“Cherish the children marching to the beat of their own music. They play the most beautiful heart song.” Fiona  Goldsworthy

“If we strive for the love, joy, and happiness the students have, the world would be a much BETTER place.” Gina Williamson

Special thanks to several staff at the Hope Center for Autism, https://www.hopecenterforautism.org,  who contributed to this post: ESE Teachers Natalie Rzeznik and Alexis Matonti; paraprofessionals Maria Gutierrez, Sandy Jerrells, Gina Williamson, and Sarah Zeilinga; Tundra, Jungle, and behavior staff; Theodore Hassel, PE Coach; Laura Drake, Aftercare Provider; Katarina Suarez, Speech-Language Pathologist; and Joanne Sweazey, Executive Director.

This post first appeared on Angela Muir Van Etten’s blog on April 5, 2021 at https://angelamuirvanetten.com/. Readers are encouraged to share the post, but are asked to include the website link.