March 2020, Vol. 6, No. 3
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RAISE The Standard
Newsletter
Raising the Standard for Young Adults with Disabilities
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Technical Assistance and Resources for RSA-funded
Parent Training and Information Centers
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SPECIAL ISSUE:
Hunkering Down for COVID-19
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In this special issue of RAISE The Standard, we explore the COVID-19 pPandemic and its effects on youth with disabilities and the systems that support them. As RAISE goes out, there are currently 200,000 confirmed cases worldwide, with more than 8,000 deaths, according to the World Health Organization.
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What is Covid-19?
Coronaviruses are a type of virus. There are many different kinds, and some cause disease. A newly identified type has caused a recent outbreak of respiratory illness now called
COVID-19 that started in China.
- COVID-19 symptoms include cough, fever and shortness of breath. COVID-19 can be severe, and some cases have caused death.
- The new coronavirus can be spread from person to person. It is diagnosed with a laboratory test.
- There is no coronavirus vaccine yet. Prevention involves frequent hand-washing, coughing into the bend of your elbow and staying home when you are sick.
- It appears that symptoms are showing up in people within 14 days of exposure to the virus.
What are the Symptoms?
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The best ways to protect yourself:
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Wash your hands frequently and thoroughly using soap and water for at least 20 seconds. Use alchohol-based hand sanitizer if soap and water aren't available.
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Cough or sneeze into a tissue or flexed elbow, then throw the tissue in the trash.
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Avoid touching your eyes, nose or mouth with unwashed hands.
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Avoid close contact with people who are sick, sneezing or coughing.
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Stay home when you are ill.
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Clean and disinfect surfaces and objects that people touch frequently.
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Only wear a face mask if you have symptoms or are caring for someone with respiratory symptoms.
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WELCOME TO
MY
NORM
When we read about those most at risk from the COVID-19 virus, those with disabilities and medical conditions are at the top of the list. Preventing illness can be a matter of life and death.
Joanne DeSimone, a New Jersey parent of two sons with disabilities, explores what this means for her family and her 21-year-old son, Ben.
“I can tell you with 100% certainty that if Benjamin catches the coronavirus and the hospital is in the position to ration ventilators, Benjamin will die. His life will be deemed less valuable than a father of two or a mother of one or ABSOLUTELY ANY OTHER HUMAN BEING WITHOUT A DISABILITY.
I know this because that is also nothing new to me. Our society is in the bad habit of placing a hierarchy on life.”
- Joanne DeSimone,
blogger, advocate, author, parent, teacher
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ACCURATE INFO IS KEY
Youth need accurate, straightforward information and guidance, in a format that makes sense for them.
We suggest these authoritative sites to learn more about the virus and how to stay safe. Bear in mind that much is unknown, and these sites update daily.
Centers for Disease Control:
World Health Organization:
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TRUE OR FALSE...
In a crisis, there is a lot of misinformation, especially on social media. To explore some of the common myths, we turn to Lisa Maragakis, MD, at Johns Hopkins University.
TRUE or FALSE? You can protect yourself from COVID-19 by swallowing or gargling with bleach, taking acetic acid or steroids, or using essential oils, saltwater, ethanol or other substances.
FALSE
. None of these recommendations protects you from getting COVID-19, and some of these practices may be dangerous. The best ways to protect yourself from this coronavirus (and other viruses) include:
- Washing your hands frequently and thoroughly, using soap and hot water.
- Avoiding close contact with people who are sick, sneezing or coughing.
- In addition, you can avoid spreading your own germs by coughing into the crook of your elbow and staying home when you are sick.
TRUE or FALSE? A vaccine to cure COVID-19 is available.
FALSE. There is no vaccine for the new coronavirus right now. Scientists have already begun working on one, but developing a vaccine that is safe and effective in human beings will take many months.
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BREAKING IT DOWN FOR YOUTH
Adults needs to convey information to teens and youth about the virus and how to stay safe. For those with communication and intellectual disabilities, this can mean breaking it down. Here are a few resources that might help:
Psychology Today offers an article about how to talk to children and teens about the coronavirus.
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This comic from
MPRNEWS explores the coronavirus in a youth-friendly way.
Auditory learners will welcome this simple podcast about the virus and how germs are spread.
Social Stories:
The Autism Educator offers these social stories about the coronavirus.
Here, from
Forbes, are 5 Things to Know about COVID-19 and people with I/DD.
Here from the NYC Mayor's Office is what you need to know about Coronavirus in American Sign Language (ASL) :
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Music can help make information less frightening. We share, “
The Germs Song” to share with youth.
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ABOUT STAYING SAFE
Hand Washing: We have all heard that hand washing is a big part of staying well and slowing the spread of the coronavirus, and all viruses.
Here are four songs that each take about 20 seconds to sing – the recommended length of handwashing
- Happy Birthday,
- Row Your Boat
- ABCs, and
- Mary Had a Little Lamb.
Social Distancing: It will not be fun, but the research seems clear – extreme social distancing is needed. Experts are worried about the rapid spread of the virus and the ability of the health care system to keep up with people who need care. We have a responsibility to ourselves and others to stay at home. A single person’s behavior can cause ripple effects that touch far away people.
HOW TO STRUCTURE YOUR TIME
Go to School
Many education websites are offering free access.
Go to an Ivy League College
Princeton, Harvard, Yale, Columbia, Cornell, Brown, Penn and Dartmouth are offering more than 450 FREE courses in a wide range of areas.
Go to a Museum
12 International Museums offer virtual tours you can take from home – See the British Museum the Guggenheim, National Gallery of Art, Musee d’ Orsay, and more.
See the Opera
The Metropolitan Opera is offered through Virtual Shows through March 22. The “Nightly Met Opera Streams” will begin at 7:30 pm each night on the Met's homepage and will remain available via the homepage of metopera.org for 20 hours. The performance will also be available on the Met Opera’s On-Demand apps.
Go to the zoo
Many famous zoos have webcams that allow visitors to watch exhibits.
OTHER RESOURCES
School is a lifeline for many youth and young adults. In addition to education, it connects them to food services, counseling services, jobs, and more. Here are some resources that can help overcome those issues during this worldwide health crisis:
Internet Service: Learning at home is a barrier for those who lack internet connection. In response, Comcast is offering free internet services.
Video Conferencing: Schools cannot provide video conferencing if they do not have a platform. Zoom and other providers are offering free services.
Food Services: During school closure, schools are still required to provide free and reduced lunch to eligible students. Check with your local school district or state Department of Education.
Access to Prescription Medications through Medicaid:
Medicaid has been ordered that all prescriptions - except for “controlled dangerous substances” be permitted to be dispensed for up to 90 days.
KEEPING YOUR SPIRITS UP
Students are uncomfortable because they are out of their routines; parents are in the role of ‘work from home,’ full-time parent, ‘home teacher’, and more. We are all stressed. While this is a very uncertain time, we must make time for joy and fun, and make plans to replenish our energy.
When a group of students from Japan could not graduate together, students used Minecraft to create a virtual graduation ceremony. While Japanese may not be your native language, we think it will bring you to tears.
And while many things are now closed, here are a few that will remain open to people:
- Pick up the phone: Call a friend, or an elderly neighbor.
- Move your body: While gyms are now closed in many communities you can do short stints of fitness in your home or yard.
- Read or listen to a good book.
- Check out fun new shows that you have been wanting to watch.
- Connect with nature at local parks.
- Limit the news: Check in daily, but do not let a steady stream of urgent updates be the soundtrack to your life.
- Take a gratitude break: No matter where you are or what you are doing, try to find something for which you are grateful.
- Learn something new: With blocks of time, it might be a good time to learn new skills.
- Eat healthy food to help your body stay strong.
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CONFERENCES, TRAININGS and WEBINARS
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Mark Your Calendar
April 15, 2020, 2:00 p.m (EST)
College Transition for Students with Disabilities: Information for Service Providers
A RAISE Center Webinar, presented by Anne Tulkin.
June 16-18, 2020
National APSE Conference, Denver, CO.
July 20-24, 2020
Association on Higher Education and Disability (AHEAD) Conference
Palm Desert, CA.
October 15-16, 2020
The Spirit of Resilience
National Caregivers Conference, Philadelphia, PA.
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Collaboration • Empowerment • Capacity-building
RAISE The Standard
enewsletter identifies and shares resources that the Rehabilitation Services Administration Parent Training and Information Centers (RSA-PTI) can use and share with families.
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Executive Editor:
Peg Kinsell
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RAISE, the National Resources for Access, Independence, Self-Advocacy and Employment is a user-centered technical assistance center that understands the needs and assets of the RSA-PTIs, coordinates efforts with the Technical Assistance provided by PTI centers and involves RSA-PTIs as key advisors and partners in all product and service development and delivery.
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RAISE is funded by the US Department of Education to provide technical assistance to, and coordination of, the 7 PTI centers (RSA-PTIs). It represents collaboration between the nation's two Parent Technical Assistance Centers (PTACs) and the seven Regional PTIs.
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